No Visitors Please
A Story of Leukemia Survival
By David B. Brown,
From the author: This manuscript is the personal property of David B. Brown of Wetumpka, Alabama. Those who receive and/or read it over the Web do so under the agreement that it may not be used for any purpose other than to provide assistance to themselves in better understanding the expectations of chemotherapy as it is applied to AML leukemia. It is strictly the experience of one non-medical person who has had this disease and has gone through chemotherapy, and it has not been proof read at this point by any medical authority. It is not to be considered in any way as medical advice. Your acceptance and reading of this manuscript is recognition of your agreement to use it strictly for this purpose and not to forward it or use it for any other purpose without the express written consent of the author.
While the narrative in this document might seem like I kept a journal during the whole ordeal, this was not the case. I did not begin documenting these events (per se) until after discovering from my on-line discussions that many others might be able to benefit from my experiences, both physically and spiritually. At that point I depended on e-mails from family, friends and fellow Christians that I received and sent over the time span of the ordeal to put everything together. As such, all I can say about the accuracy is that it is to the best of my recollection and to what the saved e-mails provided. I do not doubt that there are some slip-ups in details here and there, and there is no sound validity in any of the medical parts of it – just my own recollections and, at times, advice from my experiences.
All scriptural quotations are from the New King James version of the Holy Bible. In general, the verses have been re-formatted into paragraph form for ease of reading. When the word “LORD” appears in all upper case letters in the New King James version, this is an indication that the translators from the Greek or Hebrew recognized the presence of the name of God in these places in the original manuscripts. However, the spelling and pronunciation of that name itself is not known since it was prohibited by the ancient Jews to pronounce it, and the vowels were deleted from the available copies of the original name to this end. Thus, “LORD” is distinguished from “Lord,” the former being recognized as a name place holder whereas “Lord” is representative of an exalted high position. The word (name) Jehovah or Yahweh is substituted for LORD in many versions.
Copyright © 2010, David B. Brown
Table of Contents
Dedications and Acknowledgments
1. Late May 2009
2. Out Patient Month; June 2009
3. Hard Ball in July
4. End of the First Induction Round at UAB Hospital
5. Side Effects of the Chemo Treatments
6. Second Induction Round
7. The Next Biopsy
8. First Consolidation Round
9. Back Home Again Before Consolidation Round 2
10. Second Consolidation Round
11. The Unit
12. Back on the Oncology Floor, then Home Again
13. Third Consolidation Round
14. Home Again?
15. What is Normal?
Dedications and Acknowledgments
And now abide faith, hope, love, these three; and the greatest of these is love.
– 1 Corinthian 13:13
First let me say that the entire effort of this book is dedicated to those who have been diagnosed with something similar to my diagnosis. Its purpose is to help them, and it is not really for anyone else. Well, maybe it would also be useful for those who have been diagnosed with cancer or anything serious enough that they would expect to go through something like I went through. It is really for them and no one else. Well, perhaps it could also have some use to those who might know of someone who is going through something similar to what I went through. I would say it is for all of them and not anyone else. But there really is no one else. If it is not cancer it will be something. We all are living longer and unless we get killed outright in an accident, most all of us will have to face some personal medical crisis sooner or later.
That which is dedicated to everyone is dedicated to no one, so let me start over and get a bit more specific. I would like to especially dedicate this book to all those who helped me get through the ordeal.
First and foremost is the Lord. The Lord, who gave me my wife and kids. The Lord, who guided the doctors’ hands and created their minds and their desire to serve others. The Lord, who put love in the hearts of the nurses, technicians and all of the medical people. The Lord, who gave me a boss and fellow workers who could still take advantage of my meager talents despite my problems. The Lord who put it into the hearts of the dozens of people to give blood to help a stranger that they never will meet. The Lord, who gave me my fellow Christians and put it in their hearts to pray for me. The Lord, who heard their prayers and enabled me to be a survivor for reasons quite His own. All good things that I might do are dedicated to the Lord; they can never earn or justify my salvation, so I must thank the Lord for sending His Son to shed his blood so that I could be saved. I do not know how I could begin to cope with this ordeal without the Lord. To learn more about the Lord, read your bibles; for assistance and aid in understanding your bibles, see http://BibleThought.org/
All the glory for all good things goes first and foremost to the Lord. But there are people who have allowed God to work through them in a variety of ways, and the efforts that they put forward on my behalf deserve to be acknowledged.
My wife Carolyn comes first in that there were times when I was almost totally physically disabled. I could not drive, and at times could not even as much as pick up my computer. She did all of the heavy lifting that I usually do, from mowing the lawn to taking the garbage out. But even more importantly, she offered continuous emotional and moral support as she took me to the clinic, the hospital, the specialists, and on and on. She was there at the hospital whenever she could be. No doubt an extremely painful thing to her was keeping up with the medical insurance, co-pays, mistake corrections, appointments, and more than I could even begin to cope with. To say that I could not have made it without her is an understatement … without her I would have had no incentive to make it. She knew and expressed from the very beginning that I was going to get through it, and if she ever had any doubts she never let on.
We have two grown children whose careers and family requirements have taken them far from our home in Wetumpka, Alabama. My son Jonathan and his wife live in Washington DC, and my daughter Lesley and her husband live in Sacramento, CA. I could not ask for more dedicated children. They were in constant e-mail and phone contact, and they helped out by coming once and again to the hospital or home. As I will discuss below, Jonathan was quite instrumental in getting me connected with the medical people at the University of Alabama at Birmingham (UAB) hospital and the Kirkland Clinic.
The medical doctors have to come next. There were several specialists to deal with specific problems that I had. Several doctors made rounds, and they were all brilliant. However, one oncologist who works out of the Kirkland Clinic in Birmingham was the most influential. He is both a practitioner and a researcher, and I was extremely fortunate to be led to him. I will call him Dr. O (for Oncologist). I cannot use his name until I get his review and permission. He is an extremely busy individual to say the least.
Then there were the residents, the interns, the nurse practitioners, the nurses, the patient care technicians and the custodial personnel. All of these people made a tremendous contribution to my care and recovery (perhaps “recoveries” would be more accurate). Their dedication to service was something that I had never before experienced. They became my friends. Was it the Southern culture of caring? … or perhaps their dedication to their profession? I think it was the combination of both.
I must not forget the great contribution to my fellow workers at The University of Alabama at Tuscaloosa who were patient with me and kept the work coming. Working was great therapy and it made the time go much faster. I am not sure just how I would have fared if I could not continue working. I said above that there were times when I was physically disabled. However, since my job requires mainly documentation skills, I was able to continue working on my computer to a large extent throughout the ordeal. There were times when I was mentally disabled as well, and I took medical leave days for those times that I could not be productive. I am thankful that they supplied me with a laptop and that the clinic and hospital provided broadband for all patients.
We do not want to forget the dozens of people who gave blood, not specifically for me, but for all who would need it. This blood and the platelets literally saved my life and the lives of many others who would be put in the situation of needing blood or blood products. It is difficult to say what would have happened if that blood had not been there, but it would not have been pleasant.
Last but perhaps most important were all of the Christian friends that I have who offered up prayers for me. I would receive cards and e-mails from them. Hundreds of people were offering thousands of prayers throughout the ordeal from as far off as the Philippines. I valued all of their prayers, but was especially touched when the young people from the Prattmont church of Christ would send me their drawings and well wishes. Over and over again it brought tears to my eyes and a very strong desire to see them all again.
These were all who were with me during the entire ordeal. I will explain later why the chemo results led to the necessity for “No Visitors Please,” either in the hospital or at home. But these people were all with me all the time throughout the ordeal, as was the Lord. I was never alone.
Chapter 1. Late May 2009
Concerning this thing I pleaded with the Lord three times that it might depart from me. And He said to me, "My grace is sufficient for you, for My strength is made perfect in weakness”
– 2 Corinthians 12:8-9
It started as a headache … not your normal headache … something like I had about five or six years ago when I fought off a bout with encephalitis. During the first week of the encephalitis I had a conference down on the Gulf, and I was feeling so weird that I went into one of those medical clinics that anyone can walk into without an appointment. About two minutes later, I passed out. Lots of tests including a spinal tap later they diagnosed it as viral encephalitis. No cure, you just tough it out and take a ton of anti-inflammatory drugs. Lots of drowsiness and sleeping. It took about a month to let up, and I got back to normal. Living out in the country, I am sure that the encephalitis came from a mosquito bite. Lots or West Nile, equine and other stains were reported at the time.
But my current headache was similar, but not exactly the same. It came with a low grade fever – usually around 100. Then there was what I will call being spacey. That is kind of seeing stars, loss of peripheral vision, and if you have ever passed out before, its that warning feeling that you get right before it happens. About the only thing I could relate it to was the encephalitis. My general practitioner confirmed that a recurrence of encephalitis could be a possibility. I definitely needed some tests. Then there was also the possibility that my thyroid was acting up. I had been taking synthroid for years due to a hypothyroid condition, and they speculated on my need for an adjustment in dosage.
Then it took a turn for the worst and I could not wait for my next appointment, so I checked into the emergency room at one of the major hospitals in Montgomery, Alabama. I told my encephalitis story to the doctor there and they took blood after which they wanted to do a spinal tap. No problem, the one that I had before with the encephalitis was not that bad. If you have to have one, don’t give it too much concern – they deaden the area with Novocain (or something like that) first, and it really is not that bad. Just start counting if it starts to hurt and you can be assured that by the time you get to ten it will be over … usually the pain stops by the time you get to five.
The spinal tap is usually done with these symptoms (weird headaches and fever) to distinguish between encephalitis and meningitis. I am not a medically trained person so I can only give you my take on it. As I recall meningitis is generally a bacterial infection and they can use antibiotics to address it. On the other hand encephalitis is generally caused by a virus and there is no general way to kill viruses (the problem with the common cold). I would guess there are exceptions and the meanings of words change over time, but this was how it was explained to this layman to justify the spinal tap.
The problem was that this was not a fight between encephalitis and meningitis – there was something bigger in play. As the doctor who did my spinal tap said – “I knew it was not encephalitis because the white blood cells were not high – in fact, I couldn’t find any white blood cells at all.”
Ut oh. That cannot be good. I had an appointment with my general practitioner the following week on the first Thursday in June, so I figured we would deal with it then.
When you get a call from your doctor moving your appointment up two days (to tomorrow) for no good reason, that is not a good sign. So, instead of seeing her on Thursday, I saw her on Tuesday, but since I am not a worrier by nature, I was not that concerned, figuring it was meningitis that really needed to be addressed ASAP. Well, you can guess, of course, this is when the bad news hit.
She said: “The blood tests showed an overwhelming presence of ‘blasts’ that should not have been there. These are blood cells that have started to form but have not developed. They do not do the job of normal blood cells and they crowd out the good blood cells. We have concluded that you have leukemia.”
My response: “Leukemia? – that is cancer of the blood isn’t it?”
“Yes, and you need to get to a specialist just a soon as you can. It is going to be a busy week for you … yada, yada, yada.” I didn’t hear too much else after that.
I play the piano and had recently learned Tim McGraw’s Live Like You Were Dying. The first chorus is preceded by a question: How's it hit 'cha when you get that kind of news? Man what did ya do?
Well, now I was starting to get the answer to the first part of that question; but with a headache like I had I was not about to go sky diving or spend 2.7 seconds on a bull named Fu Manchu. I had jumped a couple times while in college, but even back then I would never dare to even think about riding a bull. The point of this song is that since you are going to die anyway, why not do some dangerous things? Some of the other points of the song … like being “the husband that most the time I wasn’t” had much more applicability.
I expect some of you know the feeling as well at this point in your ordeals. I know that hearing it regarding your kids has to be far worse. It is quite surreal, like a bad dream that you expect you will wake up from shortly. All I can remember was a sort of numbness – like all the things I had lined up to do would suddenly need to be put on hold.
“Are you sure?”
“Well, as sure as we can be, but the only way to validate leukemia is with a bone marrow biopsy.”
Ah, a glimpse of hope.
“Hmmmm. That sounds like fun.” Kind of a pathetic utterance when I could not think of anything else to say in response to something obviously undesirable.
Then there is the “what caused it?” question. I asked every doctor and they all said that in some cases it was genetic, but in most it was just a matter of chance. They asked me if I had been exposed to benzene and a few other things, but I could not answer any of those in the affirmative.
So with that settled she handed me a card for a Leukemia specialist in Montgomery.
Hey, there was still hope – could be that these docs just did not know what was going on, and that if the only way to really tell was a bone marrow biopsy, well, could be it will come out negative. So, on to the oncologist.
I hate to belabor this part of the story because had it come out negative then why write about it? So there is no mystery here except to answer the question again … How's it hit 'cha when you get that kind of news? Man what did ya do? At this point I tried to be prepared for the worst.
Just two days after the general practitioner diagnosis I was to have a bone marrow biopsy. In the interim I made the mistake of getting on line with one of the top level cancer treatment centers and trying to do some research on this. And the person I e-chatted with seemed to be quite knowledgeable. She did not recommend anything different from what I was doing at this point. But she did say something to the effect that “the bone marrow biopsy might be quite painful.” I really did not need to hear that, and as I have found out now after about four or five of them (I have lost count), they are really no worse than most dentist visits. Especially if you keep your sense of humor and have fun with the people doing it.
But I must admit that this first one was not the most fun of experiences. The biggest problem was my ignorance of what to expect. The oncologist specialist did it herself, and there was some discomfort, but she managed to deaden things up quite well. It was over in about 20 minutes and I was on my way with a little ache in the back once the Novocain started to wear off. That would last for a week or so, but was tolerable. I really had no desire to go bull riding anyway.
This happened the first Thursday in May, and we set the follow up appointment for a week from then for getting the results. I had been taking a couple of Motrin a couple times a day. It was what I had taken as an anti-inflammatory for my encephalitis way back when, and it was working fairly well for me now as it had then – not getting rid of the headache altogether but certainly making it more tolerable. When I mentioned this on my Internet medical discussion group someone indicated that this was not something that you wanted to be taking with or for leukemia, so I cut it out in favor of Tylenol. This is something you might want to check with your doctor.
[As an aside, I joined two discussion groups and am still a part of them. They are easy to find – just Google your specific diagnosis and the words “discussion group” and several will probably appear. These can be helpful for both support and technical information that will be fed to you in terms you can understand. I am not going to recommend any particular one since I do not know that there are not better ones. I do recommend that you talk with people on line who have as close to your problem as possible. You will get advice not only from them, but (secondhand) from their doctors, since that is what they will be relaying. In many cases you will get information with regard to what did and did not work. I have found some of these individuals to be more knowledgeable than general practitioners in that they are highly motivated to find solutions to their particular problems. Of course, like me, they are patients and not medical specialists, and I would never take their advice over your specialist. Or let me say this – if you do feel like you need to listen to their advice, then you need to get a second opinion or another specialist. Most good doctors will not mind if you do some independent research as long as you discuss it with them before actually implementing anything.]
Ring ring ring. Is that the phone? What? Moving my appointment up from Thursday to Tuesday? Déjà vu. I would say that that led to a rather nervous weekend. As I said before, when your doctor moves up an appointment for no apparent reason, that is not a good omen.
I could tell when she came into the office that the news was not going to be good. It was in her face and eyes. She was an extremely sympathetic person and I could tell this was very difficult for her. In fact, I would have a very difficult time maintaining my composure if I were in her position. I could tell she was fighting to stay in control.
She said that the diagnosis was Acute Myeloid Leukemia (AML) that had the underlying cause of Myelodysplasia Syndrome (MDS). The AML in itself was bad, but not that bad. In fact, some people have types of it that they just watch to be sure it does not get worse. The genetic type (that inherited from your parents) is also more treatable. However, the MDS was not treatable and it would just be there regardless of what we were to do.
Those who are strict med-tech people recognize that this is what I understood – it is possible that either I was not understanding it or that she was not making herself clear, but for the purposes of this story, that really does not matter. She did not have to say it but this had to be the worst possible diagnosis and prognosis.
How's it hit 'cha when you get that kind of news? Man what did ya do? Well, this hit me worse than the original diagnosis since I was counting on the bone marrow biopsy to confirm that the other doctors were just mistaken. It hit me like a dead man walking.
Perhaps to provide some hope she followed it up with a question: “Do you have any brothers or sisters who could provide a bone marrow transplant?” It seemed like all of the doctors started with this question. When she asked it, it seemed to contradict what she had already said. Was there hope or not? Perhaps she was grasping at straws. My response was more in anger than in thoughtfulness. Yes, I had an older brother and an older sister, but I would not want to put them through this, especially at their ages. I was 65; they were 67 and 69.
Her response: “Well, this would probably require some intensive treatment with you spending several months in the hospital anyway …” She obviously saw that I was adverse to any such thing. I had been terrified of IVs all my life, and even doing blood tests gave me the creeps. The thought of being in a hospital for months was just not in my sphere of consideration.
My feeling was probably a whole lot like yours and many others would be at this point … why bother with all of this pain if I am just going to die anyway? It would be best to just get it over with. I was thankful for having sixty five years of a healthy pain free life. I remembered the courage of my good friend Michael Mason who died of MD at about half my current age and must have been miserable in the paralyzed condition that he was in his last few years. I could not complain. I did not expect to live more than another 15 or 20 years at the most, and these years were spinning on by.
At this point it is best to interject that faith in God has been a major part of my life ever since I was baptized at age 19. I was baptized at age 19 after some fairly rough living that occurred during my freshman year at college. A few months before that I had gotten a job on Kodiak Island in Alaska, and one of my co-workers there was a preacher. It was kind of strange to me that a preacher was working a job. I had always felt like I could defend my religious beliefs, and so we had endless discussions night after night. I never realized that it was possible to just take the bible and do what it says, both for the individual and for the worship and work of the local church. So we worked through it in fine detail, and he was able to produce scripture for all that he believed and for all that the local church there in Kodiak was doing.
I will not go into this much deeper – those who are interested in the details can find it on the web site that Bryan Gibson and I created:
Bryan is the preacher at the local church of which I am currently a member … the Prattmont church of Christ in Prattville, Alabama.
To further set the stage, a few weeks (I would say about a month or six weeks) before I was diagnosed I had pulled together the section of the BibleThought Web site on Suffering. And when I was struck with leukemia we were right in the middle of studying the book of Job. I do not know of anything that could prepare me better for bad news than that. I am not saying that my attitude at this time was all that good, it was not. But I recall often in class making the comment that you have to be prepared for these types of things before they happen.
When you get into the middle of a situation like this it is often too late, and many people at that point will blame their situation on God, or perhaps even on themselves. The bible clearly teaches that “time and chance” affects us all, and for that matter, that we are all going to have to face what I was facing now sometime before we die. Even the people that are never sick and have everything they could possibly want on this earth will have to face the fact on their death beds that they are going to have to leave it all behind.
So to me to die now was the easy way out. Just get through it and get on to eternity with the Lord. I can see now that this was not the right way to look at it … God has given us life on this earth, and He expects us to fight for it, not to just give it up at the first sign of a major problem. Paul fought for his life and left us an example that I should have been following. See 2 Corinthians 5:6-9, Acts 25:11; Philippians 1:23-26.
So, my reaction to hearing the bad news was basically: “We are all in God’s hands, and there is a reason and a good purpose for everything (Romans 8:28).” While I certainly was not happy about my situation, these thoughts sustained me at this point … to the point where I asked myself: “how would someone who did not have faith in God cope with this situation?” I am still discovering the answer to that: in most cases they cannot cope at all, and their distress is greatly multiplied.
Turn at my rebuke; Surely I will pour out my spirit on you; I will make my words known to you. Because I have called and you refused, I have stretched out my hand and no one regarded, Because you disdained all my counsel, And would have none of my rebuke, I also will laugh at your calamity; I will mock when your terror comes, When your terror comes like a storm, And your destruction comes like a whirlwind, When distress and anguish come upon you. "Then they will call on me, but I will not answer; they will seek me diligently, but they will not find me. Because they hated knowledge And did not choose the fear of the LORD, they would have none of my counsel And despised my every rebuke.
– Proverbs 1:23-30
I do not view an illness like leukemia as the calamity – it is part of the calling. There is a good purpose for everything. It is a wake-up call if we will just view it that way.
OK, back to the doctor. What did she recommend? Seeing my attitude to the whole thing she recommended that I go for a light out-patient chemo treatment. She said this had a chance of getting me into remission, and then we could evaluate things at that point. To that effect she had already lined me up to begin the treatment that very afternoon at one of the clinics in Montgomery. However, she also made it clear that she had no problem if we wanted to get a second opinion … this was a very tough life-determining decision and it should not be taken lightly.
I believe that under the circumstances of the information available at this time and my attitude at that time toward more intensive treatment, this was the best possible medical decision that could be made, and I agree with it in every way. While a different approach was adopted later, there is no doubt in my mind that my first doctor’s attitude toward such collaboration was as much a cause of this as was the additional information that was discovered later. But the major cause of the change was far more due to my own change of attitude than it was to any other factor.
This begins one of the darker episodes of this ordeal, and I apologize for taking you through it, but the alternative is to just paint the whole thing over with a rosy color that hides all of the downsides. You really would not want that now, would you? Also, there is much to be learned from being an outpatient, so please bear with me.
Chapter 2. Out Patient Month; June 2009
I went down to the moorings of the mountains; The earth with its bars closed behind me forever; Yet You have brought up my life from the pit, O LORD , my God. "When my soul fainted within me, I remembered the LORD; And my prayer went up to You, Into Your holy temple.
– Jonah 2:6-7
There were two main reasons that this seemed to me to be some of the darkest days. It was a combination of the pain and the lack of hope. You can endure considerable pain when there is a purpose to it. At this point I could not see any purpose, and I continued to have problems with the headaches and low grade fever at this point. Things were happening on my behalf that I was unaware of that would shortly turn things around; but at this point I was unaware of them.
It was the second Tuesday in June, just five days after the bone marrow biopsy (BMB) that I began my chemo. The headaches and the back ache from the BMB were tolerable and controllable with Tylenol. The major pain issue was the IV in my arm to handle the chemo. IVs are going to hurt a little bit, but they do not have to become intolerable, and most of them are not. This particular approach, however, involved the installation of what I will call a temporary IV port … that way at least I would be spared the necessity of getting stuck every day for the next five days (that was the number of treatments prescribed for this round). I realized that several rounds would probably be necessary, although I do not recall at this point getting any formal plans in this regard. Much of cancer treatment is quite individualized and the next step depends on the results of test after the previous step. This was the first step.
The painless alternative to the IV approach is something that I will generically call a “port.” There are several kinds, two of which I will describe in some detail below – the two that I had. I highly recommend them – their only downside is that they can (and often do) cause infections. But there really is no alternative with intensive treatment since ultimately you run out of veins in the arms for the standard IV. But my treatment at this point was what might be described as minimal, not intensive, so it could be accomplished with standard IV procedures.
I do not want to scare anyone who needs to get an IV or even have chemo with an IV. In retrospect, it is worth it. My problem was not just the IV but depression in general since all of this seemed to be for no good lasting purpose. The IV port that they gave me would last four out of the five days – that was the limit that they placed on that type of “reusable IV.” It is really just a standard IV but set up to be wrapped up at the end of the day’s injection. It is necessary to be extremely careful not to roll over on it at night or to otherwise bump it against anything. If you did you got some instant feedback not to do it again. (I am talking about good old fashioned pain here, not some electronic device or anything like that.)
It was against the rules to get it wet (for obvious reasons). So you cut the bottom out of a big plastic bag and place it over the wrap and tape the ends in order to take a shower … but at the same time being real careful not to get it wet. It is kind of an inconvenience at first, but it is amazing how we are made to get used to even the craziest of things. In one sense I enjoyed the challenge, as I am sure is true of most handicapped people. But in another sense, we hate it.
I would say that using the word “we” and associating myself with the handicapped for the first time in my life was one of the blessings of the ordeal. I never recognized how many people are going through this, many of them without the Lord, some without even family or friends. If I got to feeling sorry for myself taking a hit in a vein, I would just look down a few chairs and there was an old frail woman whose veins had to be less than half the size of mine. It was difficult for me to imagine myself in her place for very long, but it served the purpose of my recognizing just how lucky I was not having to go through what she was going through.
So began the routine. Get up in the morning, go into the clinic at Montgomery (about a 40 minute drive), get your med preps (a couple Tylenol and a Benadryl), get hooked up to the IV machine, try to do some work on the computer … sometimes successful and sometimes not. I could last an hour at times, but working was a good way to get me to just pass out (sleep induced by the Benadryl, not fainting). Generally the chemo injection itself was not painful, sometimes just a little burning. The whole thing would take about three hours as I recall. When it was over, reverse the process and go home – that is why they call it “out patient.”
As for my job in general, the combination of doing work before going in, working in the car, sometimes during the IV process, and then evenings until I went to bed was sufficient to enable me to keep up with my job. There was nothing else to do – I could not do any real physical activity, so there was plenty of time for my type of work, even if I was not functioning at totally 100%. There were days when I knew I was not getting enough done so I would charge out a day or a half day sick leave on those days. But for the most part I was able to stay up with things and do my part.
They gave me some of the heavy lifting research reports and proposals to work on – things that other people just did not have time to do. It was a good feeling to be productive, and I feel for those who have a type of work that requires physical effort, since they must really feel at a loss. Working on the computer with this IV wrap on my arm was not the most convenient thing … but it was tolerable. Finally, there was not much else to do on weekends and I could not go to church on Sunday in my condition. I did spend some time in prayer and singing each Sunday, but there was ample time to catch up on the Friday and Monday work that I felt that I owed my employer.
The week went by quickly as most weeks do at my age. On Friday (the fourth day) they pulled the old IV out after the infusion – the limit for that type of IV is four days. I got a new IV on Saturday for my final treatment for this round. This was just for this treatment and then they removed it … what a relief. On the other hand, I went into the Saturday session without the fear of IVs that I had prior to this. Perhaps after having that thing in my arm for four days there was just some mental adjustment. As I mentioned above, all of my life I had been terribly averse to anything like IVs, even fearing simple blood tests. Perhaps the fear wanes with older age – or perhaps just getting stuck and living with it for four days was enough to solve the problem. I still do not look at it while they are doing it, but many people can observe it all with no problem.
We have all heard of the horror stories associated with chemo – nausea, diarrhea, constipation, weakness, headache, fever – hopefully not all at once. What was surprising is that the major problems do not occur during the treatments themselves. It is not until the treatments actually take effect that the problems arise, which can be up to a week or so after the treatments are completed. This for two reasons – it takes a while for the cumulative effect of all of the chemo treatments to take effect, and they also give you some IV medications before the chemo to mitigate the immediate effects (more about this later when we talk about the more intensive treatments).
It is good to understand what is happening. Chemo kills. In the case of leukemia it is calculated to kill the blasts (recall that they are those blood cells that never mature and block out the good blood cells that are so necessary to life). The only problem is that when the blasts get wasted, so does all of the good stuff in your blood that you need to sustain life and fight off infections. So it is a balancing act. I used to walk on our wooden rail fence when I was a kid – fairly easy – the rails were almost as wide as my foot. I would liken this to the case at this point – not really too difficult to balance when you are getting a light Vidaza chemo treatment I was getting now. It was later on that we got on the tight rope.
They told me that the digestive system requires a tremendous amount of good blood in order to do its thing, and that it is involved in so many of the side effects. The digestive system starts with your mouth, your lips and your teeth. And it goes all the way down to … whatever. It is the first thing to go and it does not take long to feel it going. For me, it started to go at the top and moved on down, and recovery took a similar route.
To illustrate, I read somewhere that it was not a good idea to eat toast at this point. I did not pay attention to that. Lesley, my daughter was visiting with us during that time and she made me some luscious toasted cheese sandwiches with a slice of ham. I paid the price. The problem is not in the toast itself but in the scratching that it does to the roof of your mouth. Normal people never notice it, since their white blood cells heal it before they even recognize what they have done. But after chemo it does not heal. So there you are contemplating the next month or so – at that point in ignorance of the whole process, you really do not know – how long am I going to have to have to put up with this sore mouth? (Well, next time you will listen to advice people give you, right?) Don’t eat toast while you are doing chemo.
The issues start from your mouth and go right on down to the stomach and then the intestinal track, each with its own form of aggravation to let you know something is wrong. But let’s back up, it actually starts at your lips. If not treated they will get chapped and crack so that little pieces of skin are coming off of them. It is hard to describe since before the chemo I never really had anything like it, at least not that severe. But describing it is not important – what is important is to treat it with what they will recommend, or perhaps the Vaseline-based stuff that you get in those little jars. Put it on whenever you can – usually after meals when you clean out your mouth and rinse it out with the salt and baking soda solution described below. Minimum put it on before going to bed. Get used to it – you will be using it for quite a while, and it is best to get out in front of it, so at the slightest dryness to your lips, get it on.
Next comes the taste in your mouth that starts toward the end of the five-day (or whatever length) chemo treatment. It is a metallic taste that starts out light but increases to the point where you can hardly taste anything. Get used to it too – it will not be until you get out of the neutropenic stage that you will get your tasted back – but what a welcomed thing it is when you do. There is really nothing that can be done for the taste. However there are appetite stimulants if you get to a point where food is totally repulsive. More on that later.
Fortunately there are some excellent meds for nausea, and the advice there was sort of the same as for the lips – get out in front of it! Take the pill the first sign of a nausea problem. Now that advice I did take and as a result I really never got to barfing. (Just one exception, but that was later.) Diarrhea was another issue, however. Standard treatment: Imodium. NOT – be careful. I figured I could outsmart it, so at the first sign of a loose stool, I hit it with some Imodium. Not smart. I could not defecate for three or four days. This can be quite bad in that the poisons back up into your system. Sorry for going into these gory details but these are things that are good to know and could even affect your survival, so just be extremely careful and let your doctors know when you do any over the counter things. Unfortunately, we are not done with this subject yet, but on this chemo round it turned out to be just a minor inconvenience. [In the name of equal time, let me say, I had as much of a problem with stool softeners as with Imodium … we will get to that – stay tuned. I am sure you can hardly wait.]
All in all, the side effects of the featherweight round one were not something that I currently recall as being that bad. I was surprised until I heard other people telling me of the same experiences. Just a little problem here and there. Light doses of chemo do not have to be that bad as long as you take the advice of the medical people and those who have been through it before. Trust the nurses especially … they hear lots of war stories and tend to sort out the wheat from the chaff. So when it gets filtered down to you, it is usually quite good stuff. I am convinced that nurses (male and female) are a special breed of people who are just loving by nature. They should have been driven nuts and resentful of all of our complaints, but for some reason they were not. I would expect to be tired of it in a few days … maybe I could take it for a month. But they take it for an entire career. May God’s richest blessing be upon them all.
Perhaps they told me and it did not get through. Again, these problems rarely hit during the chemo infusions themselves. So I noticed that not only me, but others as well, got kind of cocky during the treatment. “Hey, this is not so bad. I can handle it, bring it on!”
Therefore let him who thinks he stands take heed lest he fall.
– 1 Cor 10:12
Pride goes before destruction, And a haughty spirit before a fall.
– Prov 16:18
It was light chemo, but it still made me neutropenic. This means that a sufficient number of the neutrophils in my blood were killed off by the chemo to fight off the things that most people take for granted. For example, most people have no problem in touching and using a door knob and going on their merry way. A neutropenic person should either use a paper towel or wash hands as soon as possible after touching any object that could be harboring germs.
Later on the med people would say that being neutropenic is not only expected but good at this stage because if you do not kill the neutrophils you will not kill the blasts. Neutrophils are what normal people fight off normal bacterial and viral things with. We are not qualified to get technical on this – normal people like me would not understand all of the med jargon anyway. The bottom line is that just about every surface you touch that has not recently been totally sanitized contains things that can kill you when you are neutropenic. Fortunately for the normal person, the solution to this is that the neutrophils in your blood nail them before they ever get a chance to do you in.
So what else do you do if you don’t have any neutrophils to speak of (i.e., are neutropenic)? Answer … everything you can. Wear a mask when out in public, or better yet, stay out of public. NO VISITORS!!!! Please! They can bring in nasty things despite the best of intentions. This means if you are serious you will have minimal contact with the outside world in general (except on your computer, of course). This will probably offend some people who have the best of intentions and love you and feel that they can contribute to your recovery. You just cannot be afraid to offend them if they do not get it. You cannot assume they will have a working knowledge of these things.
Perhaps write something up to explain the situation. Your survival may well depend on your being up front and honest with everyone. When you are neutropenic you just cannot act like all is well even though at times you might even feel that way. Children will not understand, and they can easily bring the germs from a wide variety of classmates.
The phone? Ugh … one of the nastiest entities – get your own personal one, don’t let anyone touch it, and sanitize it totally with the strongest bacterial killer you can find in the stores (the nurse will tell you which one, and might even give you a container of it if you are really nice). Sanitize everything in your room or in your house. You might be too weak to, so it is nice if you have someone around who just wants to do anything to help. Wash your hands whenever you touch anything not sanitized. Wash them anyway once an hour. Put lotion on them because you will wear them out washing them and you do not have the neutrophils to heal that either.
Never touch your eyes with your fingers – just don’t do it – get a tissue. OK, no more rules on this – you get the idea. There are more – like certain foods you cannot eat … salad, fresh fruit, and many others – get the literature on this and read it thoroughly – then do it (or don’t do it, whatever is best). Remember, leukemia per se will probably not kill you – it is the infection brought about by being neutropenic that will do you in! So, if you want to survive there are not any precautions that are too stringent. Do it!!! or maybe it’s a Don’t do it!!! Whatever, you get the picture.
There was an upside to all of this – it seems like the chemo for some reason knocked out my headache. Perhaps there is no logical explanation for this, although I have read that sometimes chemo is administered to make patients more comfortable. My guess it that killing the blasts results in your body being able to send better (if not completely whole) blood to your brain. It was not that it made me feel great – I was still quite spacey and dragging around. I could not do much physical effort at all. But being relieved of the headache was a definite plus. I would guess that the headache ran off with the blasts and the low grade fever, since they all kind of enjoyed being together. Good riddance.
Two more aspects to the June story – one good, one not so good – lets start with the darker side first. Follow-up blood tests. They do them to see if things are critical, and if so you get a transfusion of either platelets or whole blood (usually both). As I understand it now, platelets are that part of your blood that is necessary for clotting of blood and healing bruises. They too get killed off by the chemo, so can get down to a critical level. If they do even biting your tongue can be in peril (something that was generally a weekly occurrence for me). If nothing else, it can go on hurting for weeks. This was also what caused the problem with eating toast at this juncture. And beware of hot coffee or tea. Needless to say a burn in the mouth at can be a lasting and quite memorable experience. I disciplined myself to chew without my teeth touching each other. I ordered food like Cheerios especially since it could soak it in milk and eat it in a controllable way. I would still inevitably nick my tongue from time to time and would get terribly angry with myself when that happened.
Nobody ever told me about the transfusions – or if they did I was in a daze or something and not paying much attention. I took the chemo and figured that was it. As I recall the first blood test was the Monday after the chemo was completed on Friday and the chemo had really not taken full effect yet, so they let me go home. No problem. I was really not at all sure at this point what all the blood testing was about. Even when they said I needed to come back on Wednesday, I was still not really “getting it.”
On Wednesday I got it. If the chemo takes out too much of what you need to survive, then you need to get it back, and the only way to do that is with a blood or platelet transfusion. Someone surely had informed me of this, but just write it off to only having half a brain at this point. Well the blood numbers came out low on platelets on Wednesday so I would need a transfusion. The blood testing people knew this and kind of acted like transufion police. They never said this to me, but I heard one of them yell to a patient one time: “Hey, where you going? You cannot go home, you need to get a transfusion!”
This was good – they took their jobs quite seriously.
OK – where do I go? I was expecting down the hall in the clinic someplace. But they did not have the facilities to do it at the clinic, so we had to go to one of the major hospitals that were about five minutes or so away. I say we since my wife, Carolyn, was leading me around at this point and zapping up most of the details that were eluding me. I guess I would have paid more attention if either she was not there or if she was not brilliant at remembering details. So, I was rather lazy about it … one less stressful thing to contend with.
Some problems with having to get the transfusions at the hospital. If you did not get to the hospital before noon then they would not have the time to cross type you, so on most days we had to hurry up and get over there quickly. Cross typing was essential to assure that you were getting the right blood and platelet type – if not it could kill you. So they are extremely careful and there are rules about such things. Like a blood cross type only lasts so many days and then they have to do it again. I would expect that this is because some people might come in under others names, or mistakes like that can happen, especially with a name like John Smith, or even David Brown. Patients and their personal care givers (in this case my wife) need to be particularly careful of these things because people (even the best of the kind-hearted) do make mistakes. I attribute this to the fact that they are quite over-worked. The mistakes I observed were when there were emergencies (e.g., the nurse had to clean up after a patient who really messed up the room … nuff said) and they get behind, or there are just too many things hitting them at once. These are all reasons to be quite forgivable of such things, but if they are going to get caught before doing harm, then you the patient, or your personal caregiver have to do the catching. And believe me, the nurses will not mind! They have no intent or comfort in doing harm.
[I could probably tell some very funny stories about various slip ups that occurred at times, but it is not my intent to disparage anyone, especially the people who cared so much for me during this time. I just bring it up here to remind those who are being treated or their non-medical caregivers to learn as much as you can about the medications that are being given to you, and do not hesitate to question anything and everything. Even the pills that you are given. They should as a matter of policy always read off to you what you are taking and what you are being given IV. If there is any question at all in your mind about it, you will be doing them a great favor to make sure it is right.]
Things went quite well – the hospital infusion people were very nice and accommodating. The rules required that two people validate the infusion content and the identity of the patient and the patient needs to always be quite ready with name, birth date and blood type – get them down and do not hesitate. In fact, give them before the nurse asks for them. After while you get the timing down, and can anticipate when they are going to ask. Platelets, I learned later, are quite a bit easier and quicker than blood transfusion. Platelets always came first, but often there was not enough time for everything and we would have to come back the next day for the blood.
This first time I have it in my calendar that we went back for blood was on Friday (two days after the platelets). Wednesday was beginners luck – I felt like the Friday thing would go just as well. It did not. The first nurse (as they say … bless her heart, as they say in the South before saying something negative) she just could not find a vein that would work – she tried twice. Then she called someone else to do it. Fortunately, they nailed it the first time they tried. I do not mean to scare anyone … this is just par for the course and it is to be expected. It did not happen that often – as I recall perhaps two or three other times over the total ordeal. You can get around it by getting some type of a more permanent port – as we will discuss later – but let’s not get ahead of ourselves.
As I said, platelets are generally easier to take than is blood. I am not really sure what the problem was on Friday. I had to have two units and it took a while to get things cross checked, so perhaps they set the flow on the IV machine a bit higher than it should have been. No way to tell – and no harm done. It just kind of burned my arm, adding to accumulating negatives of the past few weeks.
Then there was an incident when the blood line leaked. This was not the nurse’s fault. For some reason only known to higher-up decision makers they had made a change in the fittings and they did not match up perfectly. It caused a bit of a panic for a couple minutes while Carolyn ran out to get the nurse, but it was fixed fairly quickly and all was well. Bottom line, keep an eye on things when they start the infusion process to be sure that all is well and no fluids are escaping. Blood is relatively innocuous, but I understand that chemo fluid can cause some real problems.
So why didn’t I get a port at this point? I tried. The following week was a rerun of the previous one – blood test, transfusion. The leukemia specialist recommended someone who put in ports for most of the Montgomery patients. It required a surgical procedure – I am not sure if they did a local or general anesthesia. This type of port (which at the time they just called “port” like there really was no alternative) was a type of fixture that fits under the skin that the transfusion line could just “plug into” (for lack of a better explanation). It seemed like this type of port was not totally painless – I recall them talking about spraying the skin with something to freeze it so it would not hurt that much. However, it was obviously better than what I was experiencing, so, we (Carolyn and I) went in to see the “port doctor” to set up an appointment. He did an examination and asked if we had any questions. Carolyn was quite concerned that I should not have an operation when my platelet count was so low, and she showed the doctor my last report. The doctor indicated that they would give me perhaps a double portion of platelets the morning before the surgery. That did not satisfy her and we decided to postpone the surgery until the platelet situation was better. While I admit this aggravated me somewhat, in retrospect it worked out extremely well, as we will see later.
If I have painted a dark picture of what life looked like during this time, then I have been successful in this chapter, and I make no apology. This was not the highpoint of my life. I did promise some good news, however.
I did not recognize its potential at the time, but both of my children had been following my case very closely and doing research on the Internet. Jonathan, who has a PhD from Johns Hopkins and does health and medical-related research working for Mathematica in Washington DC went to school with a friend of his who is now a genetic hematologist at UCLA. He obtained my records and sent them, especially the bone marrow biopsy slides, to his friend for a second opinion. His friend in turn referred us to Dr. O at UAB Hospital. With the consent and blessing of my current oncologist, we set up an appointment with Dr. O for the last Monday in June, and got all of the records sent to him. [Obviously his name is not O, and neither is this his first or last initial – O stands for oncologist. I am omitting doctors’ (and all medical personnel) names to protect both them and me. If Dr. O is reading this and wants me to replace O with his name, I would be glad to do it … in fact, there is not much I would not do for Dr. O at this point.]
In retrospect, it was highly unlikely that I would have children who were both smarter than I am and at the same time so motivated by love to do whatever they could to help me out of my plight. I was resigned to let fate take its course – they were not. The probability that Jonathan would have a friend who was an expert genetic hematologist was less likely. The fact that he knew and referred me to Dr. O even less likely. And what Dr. O discovered in the bone marrow, even less likely. But all of these things had to take place in order for my treatment to be effective. I credit all of those involved with this for the time, dedication and effort that they put into their family and their work, and I have the greatest love and gratitude to them for what they did. But all of this working together was not just a random event, and I thank God for exercising His Divine Providence in giving them the skills, the love and the opportunity to show how great He is in creating them all in the first place.
Those who regard worthless idols forsake their own mercy. But I will sacrifice to You with the voice of thanksgiving; I will pay what I have vowed. Salvation is of the LORD. So the LORD spoke to the fish, and it vomited Jonah onto dry land.
– Jonah 2:8-10
I have always been amazed at the irony of Jonah’s making the fish sick to its stomach, and I believe it was an act of Divine Providence. Kind of like the fish saying that it could not stomach Jonah – or perhaps the Lord saying the same thing. Divine Providence can never be proven to be supernatural. Of course, in this case it says that the “LORD spoke to the fish,” so that does prove that His hand was in it all. Surely his hand is in many aspects of our lives, especially when we are in great distress. I am sure that my attitude at times has made some of my friends and loved ones, and especially the LORD, sick to their stomachs – but they have continued to love me despite this.
Chapter 3. Hard Ball in July
If in this life only we have hope in Christ, we are of all men the most pitiable.
– 1 Corinthians 15:19
I was not really expecting much from the second opinion. Perhaps confirmation that I was on the only track that was at this time practical for me. You tend to get conditioned to the worst possible news after being battered by it over and over again, and that way when it hits you again it really is not that bad. Defense mechanism.
Jonathan and Carolyn accompanied me to Dr. O’s office at the appointment time. Dr. O indicated that the basic diagnosis was correct and that the treatment so far would not cause any setback. However, he was quite pessimistic about continuing this treatment and while he did not come right out and say it, between the lines it sounded to me like this approach would keep me going for about nine months or so, after which it would be check-out time.
“This treatment will keep you fairly comfortable but it is not going to get you into remission, and that is what is needed.”
Hmmmm … not what I had expected. I was expecting him to just send me on back since there was no treatment for the underlying cause of my leukemia.
But there was more. A good reason to change course. The genetic hematologist and Dr. O had discovered additional information from the bone marrow that was not available to my oncologist in Montgomery. I will put it in “see spot run” terminology because that is all that I can do. It is easy to look this stuff up on the Internet if you are interested in all the technical details. Geneticists number the genes and talk in numbers. It seems like my 7 gene was all but gone … smashed, eaten, displaced, whatever by the blasts (those nasty cancerous infantile things that just will not grow up and act like adult blood cells). Now that is bad … he said that was bad. But they also discovered something else. The 8 and the 21 had kind of gotten together and as he put it “were talking to each other.” He called it 821, or perhaps 8-21 would be better. Ah, you cannot really tell what is going on … it might be something they call translocation, where the two switch places … or perhaps fusion, where they join together and misbehave.
Bottom line, the 7’s disappearing act was not good and nether was the 8-21. But a database of past cases showed that the 8-21 might just be reversible if, in the restart, the two would find their respective seats and just sit down and behave. He inferred that if the 8-21 had not been discovered then there would be no reason to put me through the type of intensive treatment that he was going to recommend. Did that actually mean there was some hope?
Well, that got me curious. What did he mean by intensive treatment? I could tell he was in a sense trying me. He was a kid to me, so I guess I was a pretty old guy to him … although perhaps that was the challenge to him. (I have a feeling that was the case from some things I overheard him say later about this “65 year old guy” … and this type of leukemia seems to have a habit of waiting until about that age before doing it worst.) Remember, Dr. O was not just a medical practitioner, he was a researcher as well. Having spent my career as a college professor and researcher myself, becoming a specimen sounded like a good way to go out. I got excited for the first time in two months.
“Well, we are going to hook you to an IV 24x7 for several weeks. You have to be willing to cooperate with us.” (Hmmmm? … did I seem uncooperative? Surely not!)
“Ah … that does not sound like a whole lot of fun.”
“You will need to be walking around on a regular basis … you can do that with the IV attached.”
I grimaced. “It does not hurt,” he responded quite quickly.
I could not relate to that. “Can I get a port?”
“We will get you a Hickman – that is better.”
“Will I be able to turn over?” I am not sure where this question came from, but I do have a fear of laying in bed and not being able to move.
“Yes, that will be no problem.” Actually it did turn out to be somewhat problematic, but he had never been through this, so what did he know? But there was much that he did know …
“What are the chances?”
At your age we would typically not take on this intensive treatment if it were not for the 8-21. I will be honest with you …you need to be sure that your affairs are in order before you even get into the treatment.”
Wow. I loved his honesty and frankness. Not pulling any punches and not speculating on the totally unknown. That was a neat way to put it.
“When can we start?”
“You are sure that you want to do this?”
“I don’t see any other alternative, now. Do you?”
“Well, you have a good point; do you mind being in the hospital over the 4th of July?
“No, not at all … let’s get things started.”
Attitude adjustment. It was at this point my attitude took a 180 degree turn. I recall internalizing it as being the start of a new adventure. Somewhere I had never been before, doing things I had never done before, meeting people that I had never met before, arriving at understandings that I had never understood before, and facing challenging situations that I had never even thought of facing before. It was time to stop cowering at every needle. Bring it on -- it might be my final adventure, I am going to make it a good one. I am going to start enjoying every minute of it and I will fight anyone who would deny me this opportunity.
As it turned out the hospital preferred that I come in July 6th, which happened to be Carolyn and my 46th wedding anniversary. There was also the blessing that Jonathan’s wife Regina came down from DC to join our modest July 4th celebration. I was still (and would continue to be for all but a few days during the entire ordeal) neutropenic, which as you recall kept me out of the public and away from visitors. Of course, we made an exception for the kids, and they were more than glad to keep their distance and go around the house sterilizing whatever they thought might be offensive.
What to wear? Unlike what you might have heard, they generally do not force you to wear those hospital gowns, except on some occasions that we will get to. I took my normal blue jeans. Figure this – when you get a port you will no longer be able to wear a t shirt (under or over). So, an old worn soft button-up short sleeve shirt with a pocket in it is best. The blue jeans were a bad idea – way too tight and binding in bed. I got some sweat pants when I came back for the consolidation treatments – much more comfortable.
The delay to the 6th was mainly caused because the first thing ordered was surgery to implant a type of port called a Hickman. But the morning was spent over at the Kirkland Clinic, which is connected by passageways over the city streets to the UAB Hospital. I was lined up to get two units of platelets to give me some protection from the surgery, minor as it might be. Carolyn’s concerns were well founded. However, some type of a port was a necessity at this point. I had about run out of veins in both of my arms.
So, I started out by checking into the Kirkland Clinic to get platelets before the surgery. It required an IV, but I was glad thinking that this would be the last. I brought the iPod that Jonathan had given me a few weeks earlier. We had put several acapella hymns from Florida College and another group from Houston on it, and I was just relaxing after the pre-meds started to take effect. I was quite experienced at this point with IVs, and figured I would just sleep on through it.
There was a supervisor or someone who was going around checking on things. I never saw her again in the clinic infusion room after that, although I probably got infusions and gave blood for labs there a couple dozen times. She came up and asked me how I was doing, and I thought I said that all was well. After all, this was nothing new to me. She asked a couple more questions and I thought they were just yes or no things.
Then suddenly she asked quite loudly: “Can you hear me?”
I pulled the small earplugs that were attached to my iPod out of my ears, rather shocked that she would ask such a thing. But it could have been that I dozed off and the combination of the Benadryl and the iPod had rendered me virtually deaf. But then, I do not recall just why she wanted me to hear her or anything else. The whole thing seemed quite bazaar. In retrospect I guess she was checking to make sure I was OK, although half the people getting infusions there were taking a nap.
Once I got the platelets it was time to get back to the hospital for the surgery. There was some confusion as to whether I should go straight to the surgery unit or to my room. No matter, as I recall I went to the room first and they sent someone over to pick me up on a gurney. At least I would have some place definite to come back to.
I am not sure what his position was, perhaps a nurse practitioner or a surgical assistant (if there is such a thing), but he gave me the information and got my signature to move ahead. While I had gotten over my fear of IVs at this point, I still had a fear of anesthesia, and I expressed it to him. One of the things that I cannot stand is to wake up and still have part of me asleep so that I cannot move. It does not happen to me that often, did not happen in the hospital or since I have been out, but the few times it did happen before that was enough. I think it really stemmed back to when I was about seven and had an appendectomy. What they used to do (and probably still do) is to wake you up right after the procedure to be sure you are OK. Well, you wake up but you cannot function … I could not move. Terrible feeling for a kid of seven, and one that I have had a phobia about ever since.
“No problem – they will just do a local for this. Then they give you something so you will forget whatever happened. Most people sleep through the whole thing.”
Seemed like conflicting information, but it satisfied me. Had to be better than getting stuck every day or wearing a four-day wrap. So let’s get going with this new adventure.
He was right. It was no problem. Next thing I know I am in a recovery stall waiting for them to make sure I was OK. It seemed to me that I was asleep for the whole thing as the prep guy had said. That was a real boost to my spirit. It was behind me now and we were ready to get onto the business at hand – no pain at all … at least that I can remember. I recall their waking me up that night and asking if I wanted something for pain. Perhaps they heard me snoring and thought it was the moan of a man in misery. I told them that I did not need anything. (Maybe they did.)
From the recovery stall, it was to my room, and a little time to examine the surgeon’s Hickman handiwork. I called it a wire since it was a very thin tube, actually there were two tubes coming out of a single divided tube that came out of me about a hand-width below my left collar bone. It was taped and covered with its own special transparent bandage so that it could be visualize and immobilized at the same time. Very neat.
I do not want to belabor this … you might think I am scared of my own shadow. But I have seen people who have had such things in the past, and they totally gave me the creeps. It is difficult for me to see how something like this could not hurt … but it did not. At this point I could tolerate it coming out of me more than I could tolerate seeing something like this in other people. Or, you might say, I got over it quickly once I realized that it was painless. [This is not a medical recommendation – Hickmans have their downsides as far as infections are concerned, as we will see in due time. I personally do recommend some type of port, however, as opposed to the traditional IV … it greatly improves your outlook on life. Remember, once the chemo starts there will be times when both lines will be in use, and you will probably be hooked up to a saline solution 24x7.]
The Hickman taps into a vein near the heart … let’s not go into that … I really preferred not to know. In my case there were actually two tubes but initially I was a bit baffled by it because while it was split in two at the end of it, there was only one tube going into my chest. They explained that that single tube actually contained two chambers that enabled two IVs to be done at once. So, for example, I could get a saline solution at the same time I was getting chemo. The saline irrigation was a constant thing, and the main reason I had to be hooked up 24x7. Without it they were afraid the chemo might take out my kidneys.
Many of the med people said my Hickman tubes were the longest they had ever seen – they hung on down to about my belt level. I was glad it was long since over time I was able to engineer it to my liking. I found the nurses inadvertently (not intentionally) had a tendency to pull on it while hooking me up to the IV machine. Being somewhat paranoid about the whole thing, I taped it in a way that I could pull up my shirt and while appearing to just be holding the shirt I was actually pushing in on the tape to prevent them from transmitting any pull up to the incision itself. Not that they would intentionally – it would take a fairly hard pull to dislodge the tape that was covering the entire area around the wound itself. But this gave me peace of mind. Toward the end of my stay to keep the ends of it away from my belt I devised a little holster for it, and that was much more comfortable than just letting it dangle. The holster device also entertained the med people.
The ends of the tubes had small one-way valves called lumens. The tubes from the IV machines had the opposite ends that fasten onto these lumens. The IV machine is attached to the IV pole that is on wheels so you can roll it around the room or out in the halls while you are still hooked up. The first time I saw someone do this was in my first chemo session back in Montgomery, and I thought he was being a macho type in walking around with his IV going (actually he was headed for the rest room). But once at the hospital I realized this was the rule rather than the exception. One of the nurse practitioners put it this way: “It’s walking that will get you well, not the chemo.” I think what she was trying to say is if you think you are going to recover by just laying there and having the chemo treatments, you better think again. You have to keep your body functional. They recommended three times around the floor (the rooms were in a rectangle that you could traverse) three times a day. Also, I was warned not to over-do it … “Don’t try to build your muscles … your internal organs need the limited blood nutrients more than your external muscles do.” So, another balancing act.
As for the IV machine itself, it was about the size of a narrow fat back pack. The IV fluids were hung on hooks at the top of the pole and the tubes go down through the machine and then to your port. The machine regulates the flow by literally massaging the tube with a series of metal studs. Quite an invention. The machine also has some smarts to tell when there is excess air in the line (usually just annoying high pitched beep that would have to be addressed by the nurse). Hate it when I had to call the nurse for trivial things like that. It also beeped when the particular fluid was out. I could easily have learned how to disconnect things, but had to control myself, since I realized that their policy of necessity disallowed this. (You can imagine what would happen if all patients started taking this into their own hands.) There was a button on the machine that enable you to temporarily (about two minutes) disable the beeping, and they did not mind if you pushed that one.
OK, so I am in my room and I have my Hickman. Wow, am I so proud – finally made the big leagues. Well, not quite. You are not in the big leagues until all your hair falls out. At this point I had not lost a single strand. But then, I had not really had any intensive chemo to this point either. I was even entertaining the thought that I might make it through without any hair loss. Naive.
The preps to the chemo are given IV – when I say IV at this point I mean through the Hickman. No pain … how nice. In fact, the preps contain some stuff to keep you from nausea … some steroids mixed in. All of the nurses on that floor knew the routines quite well. How to hook up, when to switch over, how to implement all of the doctors’ orders. Within an hour or so they had me hooked up and going. Once the preps were done they put on the chemo bottle … it is not in the plastic bags like the other IV stuff because (I would guess) it might burn on through it. The nurses were extremely careful with the chemo stuff (the bottle and all of the tubes). It even had its own special yellow disposal can. I was told that if they spilled it on anyone it might burn their skin. Needless to say, we were all very careful with it.
Before going on let’s get the medical personnel pecking order straight. There were certain things that certain people (positions) could and could not do. At the top you have the full fledged medical doctors, most of them oncologist specialists on this floor. They take two week rounds. That is, you will not see your personal oncologist (I am calling mine Dr. O) every day unless he is assigned to rounds for that two week period. There are several oncologists who share in this regard so that everyone is not all tied up all the time. They would come around sometime mid-morning with their entourage of your nurse practitioner, interns, students, and a few people that I had never seen before, but that’s OK. At a research/teaching hospital the oncologists working every six weeks or so on two week rounds gives them time to do their research. We would have it no other way. If Dr. O had not been in research he would not have the latest information, and there is no doubt that that information has greatly prolonged my life.
The next level down is a bit fuzzy. I think they are called residents. They are MDs that keep an eye on things around the clock, so there would be several of them working in 12-hour shifts three or four days in a row. If you needed some special treatment (e.g., a pain killer), and it was not on the normal med list, then this person would be consulted and s/he would in turn (if necessary) contact your oncologist to be sure. These were not doctors that you would see on a regular basis like you did the oncologists who made the rounds and saw you every day. You would establish a relationship with the ones that made the rounds, but rarely see the residents.
Other than Dr. O, the closest relationship I developed was with the nurse practitioner assigned. That was because she (or he, but always a she in my case) would come around (before and without the entourage) fairly early to really give you the once over and tell you today’s story as to how things were going with your blood numbers. (Did I tell you that they drew blood for labs every day without fail at about 4-5 AM, and so the results were available once everyone got on their rounds.) The first nurse practitioner I had stayed with me pretty much over the entire induction stay (except when she had a day off) as well as the first consolidation round. She was brilliant as far as knowing what the blood numbers should and should not be at any given point. She was extremely concerned. At this point I could not understand most of what she thought I was comprehending, but she would always add a “that is good” or “that is not so good” so as to communicate how things were. But more importantly, if you were having any kind of problem you could discuss them with her, and if she could not take action on it herself, she would check with the rounds doctor, and follow up when coming with him/her on the rounds. I tried to make it a habit to walk early before breakfast so as to “run into” her and get some early indications as to how things were going. Usually she would show up right when I was eating breakfast, but I never ordered anything hot for breakfast, so it was no problem being interrupted.
Advice – do not complain about your physical problems to any of the med people unless you want them to take some action on it. That is what they are trained to do. They are generally not trained to say: “that’s no problem.” So expect some test, pill, pain killer, some change in your IV preps, or something if you complain. This is what they are trained to do, and if it is serious enough then it is the right thing to do. However, if you want to take a wait-and-see, they you almost have to do it on your own. Or perhaps, preface your remarks by: “I do not think I need any medication for this, but I just wanted to tell you about …” That could work.
Nurse practitioners have quite a bit more authority than nurses to the point where they can write prescriptions (perhaps requiring an MD’s validation). At least some of them did for us at the end of the first stay. There is no doubt, however, that the nurses are the real workhorses of the hospital. They set up the IVs, make sure you get your meds, and generally respond to your needs. Unlike the nurse practitioners, it was rare to have the same nurse more than two or three days in a row. They had days off for one thing, after working rather long shifts. But even when they came back, they were more likely to be assigned to someone else than to you. This was done in order to keep the load shared. Obviously some patients required considerably more care than did others, and if one person got stuck with all of the heavy lifting for a long period of time it would just wear them out. There was quite a bit of informal sharing that went on when one nurse got overloaded. It was a very friendly environment.
Then there were the Patient Care Technicians (PCTs) who might have an entire side of the floor to handle. On a regular basis (every three to four hours) they would check your vitals (temperature, blood pressure, heart rate) and see what else you might need. Every morning they would take your weight. They would also do things like fixing the bed and getting you towels when you need them. Oh, and then there is … I can remember on my first day getting orders from the PCT – “We measure everything that goes in and everything that comes out.” Please excuse me for bringing this up, but it was a fact of life and it is not something to be hidden from those who might be reading this anticipating a similar hospital stay. They give you two or three quart plastic bottles and expect that 100% of your urine will end up there. It is essential for them to measure the volume to determine if your kidneys are working right. They also record what you drink every day and keep tabs on a number of other things.
Finally there are the greatest among us who are our servants. All of the above are servants, of course, but we dare not forget those who clean the rooms, empty the trash, and generally keep up the custodial end of things.
So with these players in mind, let’s go through the typical day. I never had much trouble sleeping, although being hooked up all night did restrict your movement to either on your back of on the right side (the opposite side as the Hickman). So it was semi uncomfortable and thus not hard to give it up and get up in the morning. I was still feeling good … the chemo would not fully take effect until this induction round was about over. Plus I wanted to get up and see if I could not run into my nurse practitioner in the halls just to get some early indications of how things were moving ahead. So I would get up around 6:30 AM so that I could take a shower and do some walking before breakfast which was around 8:00 AM (plus or minus a half an hour). Quite often just about the time I got up would be the time that the patient care technician (PCT) would want to take my temperature and get the other vitals as well.
Taking a shower with a Hickman is a matter of using some plastic (baggie-type) bags to cover it over and taping them to you to make it waterproof. After my nurse did that once or twice, I took over that chore. I got the nurses to disconnect me from the IV machine so I could take a quick shower and then they would hook me up again before my walk. This was good for about a week or so until I got a nurse who was a stickler for the rules, and the doctors orders said that I could not be disconnected for any reason (except perhaps fire or flood, but not for a shower). Actually, this turned out to be a favor to me since it forced me to learn how to take a shower hooked up, and that freed me from having to get disconnected and re-connected by the nurse, who would typically be tied up at this time with a shift change. (The last half hour of their shift was in conference so the new shift would know what they were facing.) So it was so much better to be freed from that and just take the IV into the bathroom with you. It was kind of tricky – you have to keep the IV stand and the IV machine on the outside of the shower curtain while you start the water and then go on into the shower. For sure you had to get things lined up – towel, washcloth, fresh underwear, soap, etc. It was tough the first few days but after that things got habitual and it was not so bad.
After the shower, dry off good, and I would get my clothes on and walk three rounds around the floor. Well over half the time I would encounter my nurse practitioner and we would engage in a little conversation. If she had the numbers from that morning we would talk about that, but in many cases they were not yet available. Usually when on chemo there would be a visit by the pharmacist who was assigned to the floor or to one of his associates checking up on last night’s chemo and checking on my weight and things like that. The chemo cocktail was pretty much custom made for each patient.
I would get back in my room after walking and have perhaps a half hour to kill before breakfast, so would get on the computer, deal with any overnight e-mail and get going on my work. Breakfast would arrive fairly quickly after that. I stuck to packaged cereal (mostly Cheerios), or oatmeal and other items that were easy on my mouth. Most of the time I would get a formal visit from my nurse practitioner just about when breakfast arrived, but that was a welcomed interruption.
Once breakfast and the nurse practitioner visit were over I would get back on the computer again to try to get something done. The nurse would come in mid morning, or perhaps before, and hook something else up for me – always saline solution, sometimes some more stuff for nausea if I needed it, some antibiotics that they were starting for precautionary purposes. Lots of variations in this over time, depending on needs.
After that there was a visit from the Patient Care Technician again to do the vitals, and sometime during the morning the custodial person would come in to clean up the room. At some point the oncologist assigned for that two week period would come through on rounds with his/her entourage. That probably took from five to 15 minutes depending on what problems I might have been having and who the particular doctor was.
In between these interruptions I was getting some work done. Not as much time as I would have liked to have had, but there was the rest of the day and the evening … well maybe. People think that you have lots of time on your hands while in the hospital. Perhaps that would be true if I were not working on the computer writing reports and proposals. I am not complaining – the combination of the work and interruptions made the time fly, and early on here I was still feeling fairly good.
Afternoon was a repeat of the morning with the exception of the doctors and nurse practitioner visits (unless something was going wrong), and perhaps every few days add in something like a cardiogram, a chest x-ray or some other special test that would require a wheelchair ride. The nurse would change out the IVs. At some point I would try to fit in another walk.
Carolyn was there most of the time to keep me company, but just like at home, she let me do my work without too many interruptions. The kids also did their best to be there when they could get away, but their very welcomed visits came only a few days a month, albeit at some of the most critical times.
The hospital runs 24x7, so just because it is getting evening or night does not mean that things change a whole lot. The PCTs still come by every three or four hours to get your vitals, and for me this was the time when they actually did the chemo. It took several hours starting with a prep pouch and followed by the actually chemo IV in the glass jar. None of this hurt to any extent – sometimes you could feel the chemo or taste the saline, but it would have to be classified as a minor annoyance at best. I just kept on going and doing the other things that were on my to-do list.
Late night. Early on in the induction treatment the nurse had to do some extra “pushes” as they called them. I did not get the technical names of what they were giving me – it is all in the records and is not relevant here. Your chemo will probably not be the same as mine. How it worked is that while getting the other chemo the nurse would also inject (in the second Hickman line) a supplement that was red in color. She told me the first night not to be shocked and think I was urinating blood if something red came out – it was the stuff she was pushing. Later on when I saw her in the halls I would address her as my favorite drug pusher. It is not a typical injection – they are specially trained to administer it since the speed with which it is administered is quite important. I can imagine that injecting it too fast could really cause some major problems.
Later night … or perhaps early morning. They tried not to disturb you too much while sleeping, but there was usually a very late night PCT reading of vitals – which we realize is essential to monitoring and making sure that nothing is going dramatically wrong. There was also a daily early morning (around 4-5 AM) drawing of blood for the labs of that day. Here again we thank the Lord for the Hickman, since this made the daily drawing of a considerable amount of blood for the lab work essentially painless. I see no way that this could be done had traditional IV methods been used – that might have worked for four days at the most and then it would have become intolerable. It was lab work on this blood that enabled the nurse practitioner and the medical teams to be able to see what was going on, the extent to which the chemo was working, and later on how the numbers (white blood cells, neutrophils, platelets, and a dozen other blood numbers were doing) in order to gauge the recovery from the chemo.
It is interesting at this point to note that recovery was from the chemo, not from the leukemia. Perhaps this will be perceived as a matter of semantics, but I do not think so. Chemo is not a cure – it is a means to an end. The means is to kill all of the cancer cells with the hope that when your system responds by starting its normal processes over that they will no longer be produced. This is what is meant by remission. It does not mean that what was producing the bad cells will never re-appear again. What it does mean is that when it kills the bad blood cells it also kills the good cells that are essential to your survival. It is expected that the levels will at some point get critical (after the chemo round is over), and at that point I generally needed both platelets and whole blood to give me back what I needed for survival and to enable me to recover from the chemo. At certain points after a recovery takes place a bone marrow biopsy will be necessary to fully determine the effect of the chemo, or perhaps more accurately, the effect of your bone marrow essentially starting over in its manufacture of blood.
Perhaps Jonathan felt that I needed a computer explanation for it. He said that it was analogous to having viruses or bad data on your hard disk. So, you totally delete everything – the good data and bad data alike. Then, when all of that is done, you re-boot the system in order to get it working properly again. Oh, neat … I am going to be rebooted!
My attitude had definitely improved at the outset of getting into UAB Hospital. Attitude wise, I am not sure if other people in my situation get this feeling, but as I looked at all of the people in the streets of Birmingham, and it was difficult for me to believe that they were not as sick as I was … perhaps they just did not know it. I know that is just totally crazy, and I realized this when this thought came into my mind. But the thought just kept coming back. Perhaps it is a defense mechanism. I got to thinking it through and realized that there were hundreds of people in the hospital, and a good number of them are in worse condition than I was. But even those who were sure to recover were still suffering. Our bodies are extremely complex mechanisms and for a person to be in perfect health literally millions of bodily components all have to be working together perfectly. Even if not in perfect health, if we are still functional and our bodies are fighting whatever our problem is to the extent that we can live normal lives, that seemed to me to be almost miraculous. I was not at all surprised that there were a hundreds of people in the hospital whose components had let them down in one way or another. Then it hit me as I looked over the city from one of the cross-over passages. Why, there are well over 200,000 people out there who are perfectly healthy … that was amazing to me and something that just did not seem possible. It is just further proof of the power of God that somehow despite all of the enemies of our bodies we manage to survive and thrive as well as we do.
Another thing that boosted my attitude was just how nice everyone treated me. After being there only a few days they moved me into a larger corner room that had a tremendous view. You could see the emergency medical helicopters come and go from the room. I always had a prayer for those who were incoming – I knew they were in a distress far greater than mine, and many of them were fighting for their lives. Weekends with vehicle crashes were particularly busy. I did not realize it at the time, but their moving me to this room could have been in anticipation of my being there for quite a while. There was no early indication of this, but it did work out that way. At one point I asked the nurse who was doing the red chemo pushing when she thought I would be able to get my Hickman removed, and she got uncomfortable and said: “Shhhhhhh … that is just not something you should be thinking about right now.”
Chapter 4. End of the First Induction Round at UAB Hospital
As for me, I will call upon God, And the LORD shall save me. Evening and morning and at noon I will pray, and cry aloud, and He shall hear my voice.
– Ps 55:16-18
Too much of anything is not good … if it were good, it would not be too much. Too much feeling good because things are going well is a real setup for a fall. Realize that I was expecting the best in an optimistic way. That would be one induction round followed by three consolidation rounds, all of which went as good as my first round at UAB. Each one would have a stay at home before the next. It would not be so bad. Naive? Well, perhaps some people can pull that off … it was not in the cards for me.
I am calling this chapter the end of the first round at UAB since there had already been an out-patient first round at Montgomery. So technically it was a second round of chemo for me, albeit the first round admittedly had been significantly “lighter” than that at UAB. Whenever I mentioned this to the doctors at UAB they would say that the Montgomery round did not count because it was too light a treatment. It did not seem light at the time, and I had some of the symptoms given above, but nothing comparable to what I was up against in mid-July. This first UAB round was completed the second Sunday of July, the chemo had started on the 6th and lasted seven days.
Lesley, my daughter joined me right toward the end of my first round, and this was also encouraging. Carolyn had gotten a room at a nearby hotel that caters to people staying over at the hospital, and Lesley stayed there while Carolyn got caught up on some much needed things back at home in Wetumpka. Jonathan was also there at that time and they decorated my room with some beautiful country scenes – made me feel like I was at home.
They were extremely careful not to bring any germs into the room. For one thing they changed after they got off the plane. Then when in the room they would wipe down every surface they could reach with disinfectant. If someone would come in the room and touch something, they would wipe it down. For the most part I would get a paper towel and only touch things with the paper towel. I never dried my hands with a cloth towel except after taking a shower and then always with a freshly washed one. You just cannot be too careful when you have no defenses against infections, and this was the main reason that I could not have visitors other than Carolyn and the kids.
This is also a good time to mention that throughout the ordeal there was a continuous flow of cards and e-mails of encouragement and prayers. I essentially disabled the telephone, however, since there was no way that I could work and take calls with all of the other interruptions from the medical people. Not being allowed to have visitors due to my neutropenic condition also enabled me to get on with my work activities.
The most optimistic prognostication would be that this first round of chemo would eliminate all of the blasts, I would be in remission and we would move on. To confirm this, another bone marrow biopsy was required, and it was scheduled for about eight days after the chemo was completed to give it a chance to do its job.
During this time it was essential that I received several platelet and whole blood transfusions to keep my blood numbers out of the critical zone. Generally these will pump you up a bit and remove some of the spacey (oozy and draggy) symptoms. There was no pain associated with them because of the Hickman, and the daily blood tests between and 4-5 AM were standard for the entire hospital stay. But again, no pain, so no problem.
The only downsides of the transfusions were the preps. The Tylenol was no problem but no matter how little Benadryl I could talk them into giving me, it almost always put me to sleep. Perhaps this is because I was trying to work and something about reading and writing on the computer tends to put anyone out even if they are not on Benadryl. I mentioned this to the nurses and to the extent possible they started letting me do my transfusions at night so as to have a minimal effect on my work. I cannot say enough about these good people – they would do anything to make things easier for me. Without breaking their rules, of course.
One rule for the patient is – do not offend anyone who has your life in their hands. When I heard that I had a bone marrow biopsy lined up I asked the rounds doctor (in the presence of his entourage) if I could get the Ms. _____, who did my last one to do this one. I had no idea that my nurse practitioner (who was part of the entourage) was scheduled to do it. She responded with: “No, I think Ms. _____ (inserting her name) will be doing it.” Kind of in a mocking and joking way.
Ouch. “Oh, I did not realize you did bone marrow biopsies … in that case I would much rather you do it.” I have never claimed to be the sharpest knife in the drawer – that was the best I could do for a quick recovery.
“Well, I will take that as a compliment” was her reply. She knew it was just ignorance on my part, so she cut me a little slack.
We made it as fun an experience as a bone marrow biopsy can be. It involves the patient and two others – the person doing it and her assistant … who, although not having the medical credential probably assisted in far more than the one doing it. So I never got alarmed when the practitioner would ask the assistant something. They would mark a particular point on your lower back and then they work around that point to deaden things and then deaden a little deeper near the bone. If they do that right the rest of it is not a major issue. It is a rather modest procedure … you keep your pants on and they put a sanitary mask over everything except the surgery spot.
There is one rule that I violated on the last biopsy procedure that I resolved not to mess up again. Once they mark the spot you cannot move. You have to lay on your stomach and be still for the duration, which is about 20 minutes. If you move then … well, I don’t really understand what that messed up, but for sure it was not good. My problem last time was a combination of being over-careful for my Hickman, and not getting set first with a pillow under me. As a result, I got a bit antsy and tried to make an adjustment, and the mark was no longer the mark. But this time I stayed still and did not make that mistake, and we kept things quite light joking around until things got a bit delicate and it would not be a good idea for any of us to break out laughing.
They were quick with the results, which were reported to me by the rounds doctor in the presence of the entourage the very next day. Negative results (that means good in medical tests) are much more difficult to confirm that are positive results. If there are a significant number of blasts it is just not difficult to see, and that is basically the major result that they got. Of course, it has to be quantified for the record, but as far as whether or not I needed more chemo, that was a simple thing to determine.
I had been prepared by Dr. O (my primary oncologist) to understand that negative results at this point were no indication that everything had failed. Of course, we were hoping that a second round of the induction therapy would not be necessary. Also, I had hoped that my first lighter round in Montgomery might have helped. But that was not to be. The biopsy indicated that 95% of the blasts had been eliminated, but that is just not sufficient. The results need to come back essentially identical to what a normal person’s would be in order for me to be considered to be in remission. If this were the case, then they could move on to the next phase of the treatment, which would be the consolidation treatments.
I had had a lot of bad news before this, so I was not really expecting the ultimately perfect result. I was a bit surprised when the rounds doctor seemed so negative when he broke the news. I was expecting him to say that having to do more induction was normal, and while we were hoping that we could nail in with one round, it is fairly normal to have to go to a second round. But, I feel because he might have had high hopes and was quite sympathetic toward me, he came in extremely somber like this was a major setback. This really had a negative impact on me. I know that was not his intent, and for sure, coming in dressed like a clown and throwing confetti would not have been in order. No matter … he did his best. It is a really tough job to communicate bad news.
I told those who asked about the results the positive aspects of it – that 95% of the cancer cells had been killed and we would need a bit more chemo to get the rest. I hope that no one felt deceived, since I did not want anyone to see this as a setback. Dr. O had it right – do not view remission at this point as necessary. If the biopsy came back just like a totally normal person, that would be a big plus; but if not, then we go on to what we had planned.
Chapter 5. Side Effects of the Chemo Treatments
My heart is severely pained within me, And the terrors of death have fallen upon me. Fearfulness and trembling have come upon me, And horror has overwhelmed me. So I said, "Oh, that I had wings like a dove! I would fly away and be at rest. Indeed, I would wander far off, And remain in the wilderness.
– Psalms 55:4-7
They started the second round immediately after getting the bone marrow biopsy results not wanting to give the blasts a chance to get a new foothold. I thought it would be good between describing these two rounds to talk about the side effects of chemo in general, and then we will pick up the story again and move through it a bit more quickly without lengthy descriptions of every side effect, most of which recurred on each round of chemo.
A major objective of my writing this is to take the mystery out of just what to expect. For better of for worst – if you would prefer not to read about all the side effects then it would be best to skip the rest of this chapter, which is more of a reference than a history. However, I know that I would have liked to have it spelled out a bit more for me at the outset, rather than having to “discover” every little thing on my own. I feel that there are many out there who feel the same way. I apologize in advance for some of the nastier things, but that goes with the turf and is part of a complete treatment of the subject.
First let me say that all chemo does not have to be accompanied by unbearable suffering. It has gotten a very bad rap probably because its side effects were so bad just a few years ago. I got spoiled early on because things went so well as compared to what I had heard. At one point one of the rounds doctors stated that he had never seen anyone go as long as I had (at that point) without getting an infection. I expect part of his motivation was to keep me from getting unrealistic expectations. That helped, but it was still difficult to deal with when it ultimately happened. He was inferring that it was not a matter of if, it is a matter of when. I know that one reason for my positive attitude at this point was that the use of the Hickman was so much better than my experience with IVs in Montgomery.
General weakness is something you get used to and after while you just adapt to it. Getting up quickly can make you light-headed when your blood numbers are low. It is good to keep this in mind and test yourself out, perhaps by walking up a couple of stair steps. If you get to feeling like you might pass out then back off. Usually if I did not have a fever or other problems I would have no problem in level walking. However, climbing stairs and walking up an incline were often quite exhausting. At points just getting up itself was exhausting, and I would have to rest before taking a few steps. But that was worst case – perhaps less that 5% of the time.
We have already mentioned the problems due to the lack of good whole blood in the digestive system. Soreness in the mouth was the first sign for me that things were starting to degenerate. It had never totally cleared up from the chemo treatments in Montgomery, which I attributed to scratching the roof of my mouth with toast. Eventually it got to a point where I could no longer close my mouth. Some of the literature on the subject indicated the tradeoff between keeping your teeth clean and injuring your gums with a stiff toothbrush. It is important to use a soft toothbrush and to not over-do it, although it is also important to keep your mouth clean – hence the tradeoff.
They prescribed something that is quite effective and quite available: a solution of salt and baking soda. Just a couple tablespoons of each in a liter of water (they gave me distilled water for this purpose). The liter of water was not supposed to be held for more than three days – so there was plenty of solution. You swished your mouth out with it and gargled with it, and it was best not to rinse it out too much when you were finished. As soon as I increased my frequency of using this mouth wash, the problem seemed to abate somewhat, but it did not disappear until my platelet and neutrophils count came back up. You learn to live with it by not chewing so hard, which is good anyway because the last thing you want at this point is to bite your tongue or have to go to the dentist with a broken tooth (something that they probably would not allow in any event). I did not have it as bad as some who have bleeding from the mouth. It was something that the medical people checked every day. When one of the nurses questioned me as to why I was not at least rinsing out once per hour, I got in the habit of using the solution whenever I went into the bathroom, day or night.
And that was quite often – at times once every 15 or 20 minutes. The frequent bathroom visits were caused mainly by the saline solution that they gave me with the chemo just flooded my system. The saline was necessary, especially with the induction treatments. Later on I was able to talk them out of having me hooked up to the saline around the clock, but that was way into the consolidation treatments, but it was not permitted at this point.
If you are having the saline as I was (around the clock), in a few days you will see your legs swelling up due to the excess and you might gain five to ten pounds because of it. Don’t worry – it is just a temporary thing. It is necessary to keep the chemo from damaging your kidneys.
I have been through periods of my life when I was overweight, but nothing as uncomfortable as this. I would guess that the circumference of my legs almost doubled. They encouraged me to keep walking, and that surely helped. But there would be no relief until they cut the saline. It was quite an experience being so overweight that I could not put my socks or reach my feet while showering.
You might kill yourself if you try to put your pants on the normal way – standing up in the middle of the room, jamming one foot on through and then standing on the other foot and pushing the other one through. That requires balance and you just will not have it under normal chemo circumstances. You will not even think about doing it that way – too much risk of landing on your head even if your legs are not swollen. You have to at least sit down to get your pants on, even if you do not have swollen legs. Once they get swollen even that may not work any longer, and you will need to lay down and kind of throw your pants over one foot at a time. Don’t worry, it is a challenge, but you will get it. Keep trying until you get it – over time you will get quite proficient at it. It is amazing what we can adapt to. Of course, you could call the nurse for help, but that would be the last resort.
Socks are a bit more difficult. Whatever you do, do not let a male nurse put them on for you. Invariably the macho men will brute force them on and it will kill your ankles, which will be extremely tender at this point (another side effect). One of the male nurses came in when I was not quite proficient in getting my socks on yet: “Hey man, you want me to put them on for you?”
“No, no, no man, I can handle it.”
Carolyn and the kids would help me but I would only let them put the socks over my feet; I would pull them up. The problem is you just cannot reach your feet once your legs are blown up like a couple of sausages. Kind of frustrating, but try this. Pull your leg up with one hand and lasso your big toe with a sock. Just start with the big toe. I was amazed that once you get the big toe, adjusting it over the entire end of the foot is really not that bad, and from there you can grab the ends and pull them up. Remember, this is when you are laying on your back. It is another one of those challenges that gives you a sense of satisfaction. The worse thing is when you just about have it made and someone comes in and wants to do the easy part for you. But maybe that was just me.
With swollen legs comes swollen feet – and your normal shoes will not fit. Fortunately I had a pair of slip-ons that were not for any definite size, but they were a bit clip-cloppety around the halls. Not much choice when your legs are all puffed up. Getting around and doing normal things – like reaching down to pull up the covers on the bed – became difficult and I had to devise ways around my minor handicap. It was one of those things you just learn to live with, and it does not last that long.
Another challenge involved nose bleeds. You learn never to blow your nose under any circumstances because it will invariably cause a nose bleed. When they started I could generally control them by breathing out through my mouth and in through my nose. The problem again has to do with the low blood numbers, specifically low platelets that enable your blood to coagulate.
You really know that the chemo is taking effect when everything tastes metallic, and that taste seems always there to some extent. It comes on gradually and you wonder why everything tastes like a rocket has just gone off in your mouth. The sense of taste is part of the total digestive system and it needs good blood to enable it to work. I do not know why the taste is metallic – that probably has something to do with the chemistry of the chemo itself. Get used to it and don’t fight it because it will linger a long time into recovery.
You can follow the digestive tract all the way down and expect some problems just about everywhere. Do not get alarmed if you have some stomach pains. Notify the nurse at the first feeling of nausea and get out in front of it. They can inject some nausea medicine into your port as a preventative. This is especially recommended if feeling kind of woozy before mealtime. The doctor was not at all surprised when I said “it hurts here” and pointed to a spot just under my left ribcage. “Yes, that’s your stomach.” Or, in other words, let us know if it gets worse, but a little discomfort there is no cause for alarm – it is expected.
We have discussed nausea to some extent above. It is just one more symptom of your digestion being disabled. The medication that they gave me for this was excellent, and I would expect it should be generally available. It is a small pill to be taken at the first inkling of nausea. I really did not have this problem myself to any great extent. Perhaps this is because the standard prep for the chemo included a preventative for nausea, and a couple other times when I got to feeling a bit upset, they gave me a push of it through my Hickman. This is one problem that seems to me to be well under control, but each person is different, and each chemo treatment is different.
Then there is acid reflux. I never had it before being in the hospital to speak of. It was particularly bad at night when laying down. Nexium helped tremendously, but it did not totally eliminate the problem.
Going down even further there are three potential problems, and chances are depending on what you eat, and at what stage your chemo is in, you will experience all three at some point. Constipation, diarrhea and gas.
We mentioned before that the remedy can be worse than the problem. Work very closely with your doctor and do not take any anti-diarrhea medicine on the side. This symptom is almost inevitable at some point – it got me two or three times. When you notify your nurse about it they will explain to you that diarrhea could be a sign of your body trying to reject some bacteria that is in your intestines. So, sorry, we cannot give you Imodium (or whatever) to address it until we take some samples. The rules state that at the onset of this symptom they must take a specimen for three consecutive days. Most of my nurses were flexible on this, and if the problem cleared up and the first sample was negative, then they would not insist on further samples. On the other hand, some of them were sticklers for the rule and this was, to put it mildly, uncomfortable for me – I just hated to put them through it.
The samples are taken in something that the nurses called a plastic “hat,” because on first impression, that is what it looks like. It is designed to fit onto the commode to make depositing your sample specimen easy. This was a minor inconvenience. What I really did not like was inflicting it upon my nurse on duty. I would always apologize to them that they had to mess with it, and invariably they told me not to be concerned and that it was part of the job. I can understand the need to collect these samples and certainly and not objecting to that. Its just one of those things that we have to get through.
I have heard it said that constipation is better than diarrhea. Not necessarily. When your body refuses to give up its poisons it can have very serious consequences. Also, when it finally does come out, it can feel like it is tearing your insides out. I had been using Preparation H at home when things got dry and hard, but when they discovered I had it (early on) they took it away, since they wanted to be totally informed on anything that might cause an infection. They told me that some patients just go too far with it. I am not recommending it one way or the other, but now that I am out of the hospital, I will have no problem using it if some temporary problem arises.
There was one point during my consolidation round that I felt like my insides were tearing out. I made the big mistake of taking two stool softeners in a single day and ended up with the worst case of diarrhea that I had during my stay. I did this out of fear because of the continued pain of that first hard stool. We have probably all experienced some degree of pain like this. But usually the pain abates in a few minutes or no longer than an hour or so. I realized the danger of over-doing the stool softeners but took the chance anyway.
Again, my advice is to work with your assigned nurse … in most cases they have seen this problem before, and they will advise appropriately and notify the doctor involved is necessary. Remember, the remedy can be worse than problem … in the case of both diarrhea and constipation, there were times when it was for me. But in neither case did these symptoms prove to be life threatening. Finally, you might try to use natural methods, e.g., slight changes in diet, instead of medicines to control things. Most of us know what gives us trouble and what works in this regard.
I guess I could try to be funny and say “this one was life threatening.” But not. It did cause me some embarrassment at times. Recognize that your lower digestive tract – your large intestines and whatever, are somewhat disabled by the chemo. So, they are not digesting the food that you put down there as efficiently as they normally do. So, this will not only cause the two problems above, it will at times produce gas in tremendous quantities. If you can pass it, that is good, but there are times when this becomes a precursor of diarrhea. This is especially true when accompanied by a churning and bubbling in your lower abdomen. It can also stink up your entire room, and, of course, this is always right before the nurse or PCT comes in for their routine things. I apologize for talking about this, but it was to a degree that I had never before experienced.
Perhaps out of defense, the nurses recommended Simethicone – it is a chewable tablet. It worked extremely well, and I highly recommend it. No secret – it is just GasX that you can get over the counter. The first time they gave it to me they did not say it was just an OTC thing. It worked so well that I knew that I would need it again some time in the future, but I did not know when. It is not something that you take if you do not need it. There should be 4-5 hours between each tablet. While patients are not supposed to bring their own medications into the hospital, I made an exception on this one. The problem was that sometimes it took a long time between when I would ask for one and when they finally get it to you, and that is because it often has to go thru the red tape of the approval process. Not all the time. Sometimes they can set it up as an “as-needed” blanket order. Sometimes the nurses will even give you one up front in case you will need it later (although this is generally a violation of their rules). But you cannot always count on that. As we have seen, there are some nurses who are sticklers for the rules. I understand and am not against necessary rules. But I kept a few of my own on the side just in case.
Getting away from the digestive tract, other symptoms included just that general beat-out feeling, sort of like you had just run a marathon and needed to lay down and rest. And if you did not you would pass out. This feeling is to be expected and should really not cause too much distress. In fact, it was this feeling of fatigue that enabled me to sleep better at night, and also take some naps during the day. It is kind of a way your body telling you not to over-do it.
Fever and headaches – these were generally not due to the chemo but to infections, so while I will mention them here, I will not elaborate since they were not typical of chemo treatments in general, as are the other symptoms above. Symptoms of infection generate an entirely different set of issues, and we will discuss that in due time.
All in all, the above symptoms were not in any way overwhelming for me during the first round. The medical people did their best to relieve any problems, and mine were comparatively light to this point. I was extremely thankful to everyone who prayed for me and mostly to the Lord for getting me through with what I felt was a minimum of discomfort. In fact, there is no doubt that I was feeling a bit heady for getting through the chemo with little problems, not realizing that the major effects of it really do not take place until about a week or so after the treatments are completed. This meant that the side effects would be taking place at the end of and after my second induction round.
Let’s go on to discuss the accumulating side effects of the second induction round of chemo, some of which may have been caused by the proactive antibiotics that they were giving me at the same days as the chemo. One of those was a rash that they attributed more to the antibiotics than the chemo. It covered about 2/3 of my body. They gave me two types of cream for it as well as changing the antibiotic that they were giving me via the Hickman. One cream was to deal with dry skin while the other was to relieve the itching. I was a bit leery of the stuff for itching in that it tended to create a cool sensation on the skin that I was not comfortable with. So I tried it in just one small area where the rash was particularly bad. The next day there was considerable improvement in that area, so I expanded its use.
There was another rash that I had after my second and third consolidation treatments. It was not nearly as visible but it seemed to itch around my ears and my eyes. The eyes and eyelids were particularly problematic since there was no way that I knew to deal with it – I sure did not want the lotion to get in my eyes. The rash was not as bad after the second consolidation treatment and I just felt like it would be a temporary thing. But after the third consolidation treatment it lasted quite a bit longer despite the fact I had long since completed all of my antibiotics. I saw no other explanation than low blood numbers, perhaps not being able to deal with some normal fungus on the skin.
A separate appearance that could be mistaken for a rash were small pinpoint red spots under your skin. These are called petechiae (pet-TEEK-kee-I, accent on the second syllable). They occur because of low platelets and are evidence of broken blood vessels under the skin. They did not cause any discomfort, but for me they were sometimes difficult to distinguish from the rash. Later on during the consolidation treatments I had three or four dime-sized red spots that the doctors seemed at a loss to explain, but for certain they were caused by low platelets and were similar to a concentration of a large number of petcehiae in a small area.
Sharp shooting pains also go with the turf. I never made a big fuss about them because generally they only lasted about 5-10 seconds. Mine were mostly in the left leg and sometimes in my side. I just felt like this was my body complaining because of the low blood numbers. They were very sharp and would catch you by surprise so as to make you yell out a bit, and then it would disappear. Carolyn and the kids thought I was going crazy or getting convulsive or something at first. After while they just ignored it.
Hair loss. They said I would lose it all, but there was no loss during the first round at Montgomery or the first round at UAB. Into the second round I started to loose a little from my head – I lost a little chunk here and a little chunk there. I looked like a mangy dog. I really wanted it to fall out quickly since that was clearly inevitable, shattering my earlier hope to get through without losing my hair. Further, it is kind of a badge of chemo – you really have not make it to the big leagues until all your hair falls out.
The rounds doctor at the time requested Jonathan (who was there at the time) to shear it all off. He said I was walking around the halls and did not want the other patients to see me with chunks of hair missing. Kind of ironic – it made me look sick. We could not have that, and I did not want to be demoralizing to the other patients, so Jonathan took care of it that afternoon. I never realized how cold it was on the back of the head when you do not have any hair. I had to get some wool caps to take care of that.
On the other hand, the status increase was immediate – strangers would smile, say hello and greet you in the halls with your skin head. The favorable response was noticeable. One of the few perks of chemo. The mask also helped (remember the rule, never leave your room without the mask when neutropenic). In any other environment I would have been a freak, but walking around the halls of the hospital, I would be a liar if I were to say that I did not enjoy the new-found status.
My ultimate hair loss did not take place until the consolidation rounds. I felt like perhaps I would be lucky and not lose my eye brows. But they too were destined to go, as were my nose hairs. This might be viewed as another perk … a dramatically increased sense of smell. It is amazing how much it is reduced by your nose hairs. Of course, it was very important to protect your nose from dust, which was another function of the masks.
They said the hair loss was due to the blood numbers, but chemo can cause a reduction in testosterone production, which can also result in hair loss. Generally the loss is reversible, but several patients told me you really cannot tell just what the color or consistency will be when your hair does come back. Mine came back in the same order as I lost it – top down. It had not totally returned to my legs for four months after I was no longer neutropenic (at this writing in June 2010), but I would estimate that it is up to 95% of my normal hair growth before being diagnosed.
I had an ear problem, but that is probably because of the small earpieces that I was using for my iPod. They fit inside of your ears. Things that naturally just heal themselves become quite problematic when your blood numbers are down. As soon as they started becoming a problem I stopped using them and replaced them with a small set of earphones. But that was a little too late, so for a week or so they put some ear drops in my ears once a day. This side effect was largely self inflicted. My advice would be – do not put anything in your ears – earplugs, micro ear pieces, whatever. Anything that can possible cause any irritation whatsoever can be problematic when you are neutropenic … minor bruises just do not heal as they normally would.
Another side effect involved my eyes. This was only after the first consolidation round. I figure that the particular chemo that they used in the first two induction rounds did not cause any eye irritation, but something different was used for the consolidation rounds. The medical people, and especially the nurses, knew and understood the problem. They prescribed special eye drops that contained a steroid – two drops per eye every four hours around the clock during the chemo and for two days afterward. They did it the first few times, and then I took it over. It soon fell into what I called the “doctor pepper” times – 10, 2 and 6. You might think that the 2 AM time would be a problem, but the nurses would wake me up if necessary, and usually there was something else going on – like my hourly (or more frequent) visits to the bathroom.
So what was the problem? It had to do with what happened after the first consolidation round was completed. The instructions that they gave were to continue the drops for two days after I got home. I did that exactly and then quit completely. I recall having scratchy eyes after that for at least a week. It was not until my blood numbers came back up before the condition improved and I stopped noticing it. After the second consolidation round I went ahead and kept using the drops a bit longer, especially if my eyes felt the least bit raspy. I tapered it off and no longer did it every four hours, and at times just one drop rather than two, and always before bed time. At some point I just forgot to do it any longer. I did the same thing after the third consolidation round, and that worked much better. So I recommend tapering it off rather than cold turkey after two days.
Perhaps the least annoying side effect was the waves that you get in your fingernails, especially thumb and big toe nails. It takes a while and you will not notice it until the whole ordeal is over – it takes about 9 months for nails to grow out, so you will see some effects in a month or so at the base where your fingernail comes out, but the whole nail will take quite a while. Just be real careful to keep them cut and filed. I messed up and split one down the middle when the thin part came to the tip of my right thumb. Once it breaks the only way I know to solve that problem of keeping it from catching on everything is to put a piece of tape over the end of your finger or thumb. Try something different each time you put it on and you will evolve something that works well for you. You will probably have to change it three or four times a day. If you are still neutropenic be very careful of it and change it twice as much – it has to be a real magnet for germs.
Chapter 6. Second Induction Round
Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble.
– Matthew 6:34
As I mentioned, the second induction round was started right after the bone marrow biopsy results were available; I did not get any “home time.” Dr. O had contingency plans all worked out, and they were put into effect immediately. The chemo was initiated on the third Tuesday in July, and it would last through Sunday. Lesley, my daughter had to go back to her job in California, but I recall there was a little overlap with my son was able to watch over me for a few days. Jonathan brought my music keyboard in and that provided a bit of a diversion and lifted my spirits.
As this round progressed throughout the week I just got to feeling uncomfortable, especially at night. It was difficult to nail down just what the problem is. Would it help to say I was antsy? Hard to lay still. A ticklish feeling behind my knees. Difficult to roll over … with the Hickman there were only two ways to lay … on my back or on my right side. Sleeping on my stomach has caused me to have a bad back in adulthood … plus the fact that I would mash the Hickman entry point, so that was just not even considered. The left side would also put pressure on my Hickman tubes, so that was not a consideration either. But being antsy was something I could live with since I knew that the cause was my low blood numbers, and I had pulled out of this problem before. It was just a matter of hanging in … or so I thought.
I was starting to feel the full effects of the first round and was getting hit with more as well as the antibiotics. I was thinking that I should hit bottom on the last day of the second round, which was the last Sunday in July. I still did not realize at this point that the full effects of the second round would not take effect for another week. But the med folks did, and they knew I would probably need to be hospitalized for at least another couple weeks.
I asked Jonathan to bring in a medium sized screw driver. “What for?” Ah, just bring it in – I will tell you later. It was for the shower head – the one that you can hold in your hand. These are really good for controlling where the water is going and for directing the rinsing off when you are handcapped. But it does not work when the end of it is spritzing water all over the place. Jonathan always liked to do everything for me, and I kind of remember him getting in and tightening the screw on the shower head while it was off (of course). I tried it out later and – perfect. “Why didn’t you get the maintenance people to come in and fix it?” Several people asked me this. The answer was the same reason I wear a mask when I go out in the hall and have a sign on the door that says “No Visitors.” I have nothing against the fine maintenance people who keep the hospital running, but why take a chance on it when you don’t have to.
I am not sure when the low grade fever started. A low grade fever is something in the 99s or a little over 100, and it produced its usual headache. The fever is indicative of your body trying to fight off an infection. The critical point that they use is 100.5 … if you get over that then the doctor needs to be notified. [Later on when I got home that was also the critical point for calling the doctor and getting back to the hospital.] Below that point they just watch things very carefully.
This was the first time I had run any kind of a fever since being in the hospital and it was a new experience. This fever tended to run in cycles, and when I got the chills, that was a sure sign that the fever would follow. My inclination was to get another blanket. Typically they gave you one light blanket, and that was sufficient. I had a second one and asked for a third. The nurse refused indicating that it would run the fever up. Two blankets max.
What happens in the cycles is that your body is calling for more heat to fight the infection since certain bacteria cannot survive above a given temperature threshold. To generate this heat, it makes you feel cold and you shiver and shake driving your temperature up. This cycle might take a couple hours. At some point in the cycle the chills would stop, and I would feel quite good for a while despite the fact that my fever was high. Then I would cool down and the process would repeat itself – it might take several hours per cycle.
Obviously, you cannot let a very high fever totally run its course because if it gets too high it can take out your vital organs, or perhaps the brain. On the other hand, they would not just indiscriminately give me Tylenol because they needed to know to what extent I had a fever, and the Tylenol would mask it. So there were certain times I could get Tylenol and other times not – I got to where I could play the cycles and request the Tylenol at the right time so that it would take care of my headache. I recall getting some Tylenol after they drew blood and took my vitals in the morning (between 4 and 5 AM). This would last at least until about noon, and then they might allow me to have more, or they might want to wait and get my vitals (blood pressure and temperature) first. The low grade fever responded well to Tylenol, but the downside was the masking effect.
Figure this was about four or five days after the completion of my second induction round of chemo. They were pumping antibiotics in through my Hickman to try to control the infection, but they could not tell what was causing it. As long as the fever did not take off above 100.4 they were not that concerned.
But they really wanted to find out what the cause of the fever was. And to that effect each day was a different test. I had a touch of diarrhea and when they tested that they thought that they found it. They adjusted the antibiotics appropriately and seemed to get some results for a day or so, and then the fever returned.
It was at this time that the rounds doctor assigned for that two week period suggested that they should remove my Hickman. He had suspected that it was infected. They did tests for several days to try to confirm this, but they could not. Sometimes these tests involved getting an extra blood test from my arm. Not something that I liked, but kind of a minor inconvenience at this point – I appreciated whatever they could do to verify it one way or the other. It was something that you could prove if the tests came back positive, but it was impossible to disprove that the Hickman was the cause if the tests came back negative, since the tests just might not be able to detect it. At first, it was a surprise to me that this was under consideration, and I indicated that I did not want my Hickman removed. The alternative would be to going back to the IVs in the arm, and with all of the antibiotics and saline I was getting at this point, that option just seemed intolerable.
“OK, lets give it 48 hours,” he said – at least I had been warned. At this point you suddenly shift sides. While previously I was always glad that they found my tests negative, now all of a sudden I wanted them to find something positive – anything, it seemed, would be better than giving up the Hickman.
They tried a sinus scan because I had been taking some sinus medicine to control my runny nose since I got there. That proved negative. There were several other tests that they ran, one involving a chest X-ray which I did not mind since they brought the machine to my room. That proved inconclusive and the next day my fever rose dramatically to about 104. There is a certain fever level at which they will not give your any IV blood or platelets. At this point I needed both. I recall it was rather late in the day. My chills were the worst I had ever had them. They were to a point where my hands and arms were shaking back and forth uncontrollably about six inches. I could relax and control it for about five seconds and then they would take me over again.
It was just about that time that someone showed up unexpectedly (to me) to take me to have a full blown chest x-ray. I did not know how I was going to be able to stand still in front of that machine long enough, but I figured I had better just go. If they could find something, that would be good. I am not complaining about tests – it was good that they did every test that they could on me to try to find out what was causing my fever. But I must confess that on the way to this test I was convinced that this one was going to do me much more harm than good.
They helped me into the wheelchair and covered me with a sheet. The x-ray machine was in another building, but there were connector passageways over the streets and between the buildings. I had been to x-ray several times before, so knew the way. But it seemed like ages and each draft of cool air got me to shaking worse. I do not know who it was who asked, but someone when we arrived at x-ray asked me if I had ever had a seizure. No, it was not a seizure, I was just having the chills.
They wheeled me into the x-ray room and I had to get up and stand still in front of the machine. “Do you need some help getting up?” the technician asked. “No, I think I can do it.”
I managed to get up and felt I might pass out. But then was able to relax just temporarily for a few seconds. They had to get two shots – front and side. Then I was able to get back under my sheet and try once again to warm up. They knew I was having problems so they got me back to my room quickly. Perhaps they did not believe me and felt like I could go into a seizure at any time. During this whole event I was still wondering if this was not doing me a lot more harm than the x-ray would do me good. I just wanted to get back in bed.
I was scheduled for a blood transfusion that night, and the blood was on its way. The problem is, I was way over the temperature limit allowed for getting blood. Kind of ironic – the blood will go a long way to getting me stabilized, but I could not have the blood unless I was stabilized. Between a rock and a hard place.
But the nurses had a solution. They started stacking ice under my arms, on my stomach and between my legs. When that was not sufficient they brought in a machine that pumps cold water through a special blanket and got me on top or that.
Now, if I thought I was cold when I went to x-ray, that was nothing compared to this. Fortunately in about a half hour they got my temperature down enough for the transfusion and I got under the blanket. There would be a couple more times when I would need some ice, but I was never again would I need the dreaded cooling blanket.
The blood helped … they gave me platelets as well. I still had a fever but it was back to the low level again. Fortunately, after all of the hassle of the day and being worn down from it all, sleep came easy.
My wonderful nurse practitioner came in the next morning and announced that the findings of the chest x-ray were positive. I had some unusual indication of dark pin-point spots on my lungs that were, in all probability, pneumonia. Mixed emotions. The good news was that since they nailed down what it was that was probably causing my fever they would know how to treat it. Of course, the other great thing about it was that this lessens the chance that a Hickman infection was causing the fever. I was relieved about that, and she put me at ease as far as the pneumonia was concerned. I did not have any symptoms of pneumonia, but that was not unusual. They would keep a close eye on it and change the antibiotic mix to address the problem.
I did not get quite as favorable a response from the rounds doctor. He still wanted to pull my Hickman. I played the 48 hour card – only 24 had passed, plus the fact that if pneumonia was causing the problem, then perhaps it was not the Hickman. I do not blame him – he wanted to play it safe, and the fever of the previous night was really not something that you want to play around with. But he relented and allowed the 48 hours to play itself out.
The next day was quite a battle. Neither of us raised our voices but there was no doubt we were arguing. Things looked like they might be improving and I had stabilized at a relatively low grade fever level. “How about just one more day?”
“OK, one more day but if you still have a fever then we really need to get it out.”
“OK.” I would worry about it tomorrow. Let’s see what happens.
I try not to say many prayers on my own behalf. God knows what I need more than I do, and I just pray that His will be done. But that night I was in some special distress and felt like nothing but disaster stood before me. I was miserable with chills, headache, fever, sweating, and they would probably pull the one thing that was enabling the medication to be given painlessly. I would need to go back to that miserable month in Montgomery of endless IV sticks. And even at that, what was the point? The chemo did not seem to be working anyway, at least my last bone marrow biopsy did not show much promise.
So I just threw myself on the Lord and decided that this was it – I am going to let Him do my worrying from this point on. That is what it teaches in Matthew 6 – “sufficient to the day is the evil thereof.” The whole chapter tells us not to worry – that God will take care of us, one way or the other. So I told the Lord that I really did not care one way or the other – whatever He knew was best I would gladly accept. And with that, I smiled, relaxed and fell asleep.
They let me rest that night without interruption until they came in (of necessity, as they did every morning) to get a blood sample. I felt good after a restful night’s sleep … well, four or five hours with probably three or four get-ups for the bathroom. I think now I was getting up without really fully waking up. It was rare if ever that I had any trouble getting back to sleep. I am sure I was not totally waking up, but I was doing OK navigating to the bathroom.
The Patient Care Technician came in right behind the nurse who took my blood. They would read things off to me … “Blood pressure 132 over 82; … … … (beep – the thermometer) temperature 98.9.” It hit me – I had been all night without Tylenol and my temperature was almost normal for the first time in weeks. Was this just a fluke or could it really be that my body had beaten the fever. I thanked God – I was convinced that this was not all chance. All good things come from God, and while I have never experienced a supernatural event (i.e., one that was impossible to explain through natural causes), I do believe that God’s providential hand is to some extent in all things, and that all things have a purpose. No, if God were to save my life with a miracle like those described in the bible, then I would be jumping around and my numbers would all be perfectly normal. I was still a very sick old man, but that was OK … it was easy falling back to sleep. Suddenly there was hope.
My nurse practitioner was ecstatic. My numbers improved dramatically and that is probably what had knocked out the fever … whatever the infection was. She lined me up for another chest x-ray to be sure that the pneumonia was clearing up. She along with the doctor both admitted that the antibiotics had probably kept me from getting any worse, and I needed to finish the course with them. But, as far as the medical explanations were concerned, it was my blood numbers coming back up that had provided what I needed to beat the problem. I still thanked God for whatever it was in me that He had created to enable me to rally.
As I recall, it was just about this time that the rounds doctors were switching off and my regular oncologist (Dr. O – sometimes I called him my chemo doctor) became the rounds doctor for the next two weeks. So the issue of whether to remove my Hickman was no longer a topic of debate, and it would not be as long as my temperature stayed down. At this early point of just getting a couple of temperature readings, they did not want to jump to any conclusions either way. It would be essential for the temperature to stay around normal, and I was in agreement at this point, that should it go up again, it would be the best thing to go ahead and get it out. I needed a couple more days of observation, and I was still getting three or four antibiotics IV and another one in pill form.
It was almost the middle of August. Since I came in July 6, this makes about 40 days that I have been in the hospital when they told me “another day or so and you can go home.” 40 days … the time Noah was in the arc, the time Moses was on the mountain, the time that Jesus was tempted in the wilderness. If you say it fast it does not sound like a lot of time. But when you spend that much time in a different environment than you have ever been in before, something happens to you. For one thing, I was not really that anxious to get out of there. It was not that I did not want to go home sometime, but I really felt like I needed a few more days of observation. I had conditioned myself to accept the fact that I might never go home again, and it was kind of strange trying to get “unconditioned.” I just had not been thinking at all of going home … at least not to our Wetumpka place.
It was such a surprise when they told me that it might be right after the weekend that I actually argued with them – “are you sure?”
“Yes! if you are not running a fever or getting IV medication then there is no reason to hold you in the hospital?”
Well, yes, that sounded reasonable, but after what I had been through just a couple days ago, I was feeling extremely vulnerable.
They had me hooked up to something over the weekend, but fortunately things were winding down, and even my legs and ankles were getting back to normal after being swollen to various extents over the past few weeks. Carolyn packed things up for me, but I held onto my computer as they wheeled me out. It was Tuesday and I would not need to come back until the following Tuesday (assuming my temperature stayed right and nothing else went wrong). The appointment for the following Tuesday was for the next bone marrow biopsy. Then I had an appointment with my doctor the following Thursday.
Once home, it was now our responsibility to take care of the Hickman. The process was to give it a Heparin flush every three days and to change the dressing and the lumen caps every week. Heparin is a blood thinner and it keeps the Hickman tubes from getting clogged. The lumens are the ends of the two tubes, each of which had a one-way valve cap so that fluids could get in but nothing could get out without the use of the blood drawing attachment.
Taking care of the Hickman was a fairly simple procedure, especially since we ordered pre-loaded syringes with the Heparin. Since I could reach the end of the tubes with no problem, I could do this myself. All except for changing the dressing. However, we had enough transfusions and blood tests going on at the clinic, and the nurses were just so nice in offering to change the dressing. We (Carolyn and I) only had to do it a couple times.
Chapter 7. The Next Biopsy
Are not two sparrows sold for a copper coin? And not one of them falls to the ground apart from your Father's will. But the very hairs of your head are all numbered. Do not fear therefore; you are of more value than many sparrows.
– Matthew 10:29-31
Getting home was an experience within itself. There were times when I had lost hope to the extent that I really was not even thinking that I would ever see home again. Now here it was. I was still quite weak so could not go outside and enjoy the countryside. I had to be extremely careful to stay isolated. But other than that, it was easy to adjust to the old environment. Not to complain about the hospital food, but everything just tasted so much better the way Carolyn cooked it. I still had some metallic taste residue, but that did not matter.
So, being at home was just a matter of being extremely careful – no cuts, no bruises, no colds, no flu. Going out, walking around and getting scratched up a little bit was routine for me before being diagnosed, so that was one thing that would have to change. But my own weakness kept me tentative most of the time, and I was not at all anxious to turn the world upside down.
Once at home it was difficult to stay in bed all night. Getting to sleep was not difficult, but I still had the constraint of only being able to sleep on my back or one side. Plus there was that antsy feeling early in the morning … mostly around 4-5 AM or so, waking up and feeling sure that there was no way to get back to sleep again. In these situations I would go out and get in my recliner and listen to hymns on my iPod, and I usually had no problem in falling off to sleep in those conditions.
Despite these lingering issues, each day was a joy – there is nothing like being at home. The days went by fast and the biopsy day arrived quickly. I was not able to drive yet, so Carolyn drove me on in to Birmingham. As usual, the people doing the biopsy were extremely nice, and it went quite well.
It was about this time that I had contacted my brother Earl up in New Jersey to see if he would be willing to be a bone marrow or stem cell donor. Of course, we had been in much closer contact than usual since the beginning of the ordeal but I did not want to make this request of him unless it was necessary. At this point it was not seen to be essential, but since the doctors kept asking, I felt that it would be good for him to get tested. I never had any doubts that he would be more than willing, and he was quick to confirm this. I e-mailed him back and told him that no matter what was to come, he would always be a hero to me. Despite his willingness, he is two years older than I am, and he has health issues of his own, so it may well be that his doctor would have some reservations about it. I also have a sister, Fran, who is two years older than Earl. I know that she would do whatever she could in this regard as well, but this could be quite traumatic for someone who was getting close to 70.
We moved ahead with the testing, and Dr. O and his staff got a kit sent out to him from a local lab. It was a fairly simple blood test that was performed and analyzed locally. There was some delay after the test results were obtained due to a legal matter – Dr. O knew the results but could not tell us until he had written permission from Earl. Once that was obtained, he gave us the results: “perfect match.” Of course, we were greatly relieved, but we were still hoping against hope and praying that it would not be needed.
This would be my fourth bone marrow biopsy – one at the outset in Montgomery, one before I checked in at UAB, and one after my first induction round. Now that the second induction round was completed, it was important to find out what it had accomplished.
Needless to say, two days later it was a bit tense sitting in the room waiting for Dr. O to come in and review the results with us. The tension was broken by someone talking outside. We had left the door open. We were reading at the time and were not paying a lot of attention and could not pick up all the words. It sounded like a couple of doctors talking to each other, one male and the other female. He was telling her about the results of some tests and sounded like he was surprised and extremely excited with the result. I heard him say something about the man being 65.
“That sounds like Dr. O,” Carolyn said.
I disagreed … it did not sound like him to me.
We both started listening intently. If he was talking about my results, it was definitely on the positive side. I was very reluctant to get my hopes up too high … too much bad news in the past … I would accept whatever the results might be and leave it in the hands of the Lord to be concerned about it.
I could tell when he came in that we were looking at some good news. He was obviously feeling great about something. Then he went over a bunch of numbers and medical terms that I could not understand. He then gave me a paper that had all of these things documented. He pointed at a word at the upper right hand corner of the page and said: “That is the main finding.” It said “Normal.”
What that meant is that the chemo had nailed virtually all of the blasts. He explained that even people who never had any problem at all might still have a few blast cells that would mature naturally, but the main thing is that my test results could not be distinguished from the normal person. The cancer was in remission. Or, as he put it, “After all of this, somehow you managed to land on your feet.”
He had told me about the consolidation treatments on past visits, so I knew that this was not the end of my hospital stays. But the details were still unknown.
I was more concerned with the long term plans … “Does this mean that the chemo might be sufficient and I will not need a bone marrow transplant?”
“We will keep all options open, but at this point there is a good chance that you can make it without a transplant. The risks of a transplant at your age are higher than the risks of just taking the ‘wait and see’ approach.”
Words that I wanted to hear. Nothing is ever a definite given with any type of cancer – we just need to live one day at a time, and it looked like I might have a few more at this point – that was good enough. But this news was even greater than that. I could not wait to convey it to my brother Earl.
“So, where do we go from here?” I asked Doctor O.
“I want you to go home and try to build yourself up as much as you can. I am going to give you a week and get you back in to the hospital this coming Wednesday (that was in the first week of September).
No problem … I still had my Hickman and I was ready for anything. Perhaps my confidence was being replaced with pride at this point. I needed to be careful about that.
Each day I tried to push things just a little further, and by the time my last day at home rolled around I was walking well over a mile per day. Where I walked there was one place with a fairly steep hill for about a hundred yards. I used this hill to determine my ongoing status. If I could make it up the hill without getting too out of breath and feeling spacy, then I would consider another round. The number of rounds was a measure of how my strength was growing. At this point I was feeling quite good. But this was a good month after my last chemo. Things would have turned around quicker had I not come down with the infection and the accompanying fever.
Chapter 8. First Consolidation Round
For we do not want you to be ignorant, brethren, of our trouble which came to us in Asia: that we were burdened beyond measure, above strength, so that we despaired even of life. Yes, we had the sentence of death in ourselves, that we should not trust in ourselves but in God who raises the dead, who delivered us from so great a death, and does deliver us; in whom we trust that He will still deliver us, you also helping together in prayer for us, that thanks may be given by many persons on our behalf for the gift granted to us through many.
– 2 Corinthians 1:8-11
They call it consolidation or maintenance as opposed to the induction chemo rounds that got me into remission. The way it was explained was quite simple. I go into the hospital for chemo for a week. Then, as long as I was healthy (e.g., no fever), I go home for recovery for a week or so. Then, after that there will be a couple of weeks when I am feeling half decent (good blood numbers are back up). But after that I would have to go back to the hospital for another consolidation round of chemo. He was not sure just how many rounds, but it seemed like we were aiming for three as an optimal number. It would probably depend on how many I could handle without serious side effects.
I asked Dr. O if it would not be better to stay in the hospital longer after the chemo to make sure all was well. His response was that I would be safer at home than in the hospital as long as I was able to stay isolated from people. You are not very isolated in the hospital, and there are some very nasty bacterias that do not have antibiotics that can cope with them.
The purpose of the consolidation rounds was to get any of the blasts that were still present but could not be picked up by the bone marrow biopsy. Doctor O said that these would get me fairly close to the edge and would not be easy – perhaps more difficult than the induction rounds. I was not really too concerned. In fact, by the time I got to hospital was feeling quite good … ready for anything. It is funny how fast you forget your pain when you start feeling good again.
I walked around the floor with my mask on but was readily recognized by several of the nurses and staff. They all asked how I was and what I was doing back. It was definitely an upside of what otherwise would have been a real downer. However, I did not expect to be in the hospital for more than a week, so getting admitted to the floor was not bad at all.
Something different in the chemo this time – there was none of that red push stuff. The prep was about a half hour IV, and the chemo was about a two-hour IV. They gave me saline solution before and after, but basically when it was done they cut me loose and I was free to walk around the hospital, take a shower or whatever. They wanted me to be sure I drank enough liquids, and I promised I would shoot for 100 ounces per day. I kept close track of it.
I was proud of my physical abilities and got to the point where I could go up the steps a couple times on any round of walking. There was an external stairs down in the lobby of the hospital that connected the first and second floors which was quite convenient for that purpose. The chemo did not seem to slow me down in this regard, at least not until close to the end of my stay. It was not really supposed to take effect at all until after it was all over and I was home for a few days.
I did have a little problem on the second day – a little minor heart burn for which they gave me some Nexium. I do not know if this was due to the chemo or the change in my eating habits. I was eating breakfast plus two hot meals per day in the hospital – something that I am really not used to. I usually only have a snack or a sandwich for lunch. My appetite was pumped up with the anti-nausea part of the prep, which contained a small amount of a steroid.
So getting the first round of consolidation chemo was a breeze and quite uneventful. I got out the following Tuesday morning (second week in September). My last blood tests did not show any significant drop in the key numbers. They anticipated that I would bottom out at home on the following Saturday. I was just starting to get that metallic taste, but it was just a minor thing at this point. My mouth did not have its usual soreness that I was expected.
I was scheduled to come back for labs (blood test) on the following Thursday, and by then things were getting quite draggy. It was a struggle to just keep going. I felt like if I could just make it to my next lab blood test on Monday I would have it made. Like in the hospital, they were taking blood out using the Hickman, so the blood tests were no problem. They were done at the Kirkland Clinic as opposed to the hospital. The numbers were dropping as they expected, but not low enough to do any transfusions or anything like that. However, I felt sure with the way I was feeling that I would need something on Monday.
By the time that Saturday arrived (supposedly my “bottom out" day) I could not even think about taking a walk or anything like that. Most of the time I just wanted to sleep. I was just too weak to do much else. If I sat still I could do my computer work. But if I got up quickly I would get spacey and see spots. This continued into Sunday, where I spent most of the time just sleeping. This was the second Sunday in September.
The good news is that I felt like I was a bit stronger on Sunday. We went into Birmingham first thing Monday morning to get the blood test numbers run and see if I needed anything. The only problem that could arise at this point was if I came down with a fever. We could deal with anything else. A couple more days and things should get a whole lot better – that is what I was thinking. I felt that having been through it once helped me understand what I was up against.
The numbers were low and I was being extremely tentative on Monday morning in Birmingham. Dr. O’s nurse said that the numbers were marginal and asked me if I felt like I could make it until the next lab appointment on Thursday. I told her that I had really been feeling miserable and needed something. They lined me up for platelets that day. But they could not get the blood analysis cross check completed in time for the clinic to do the blood, so I would have to come back tomorrow.
We arrived back on Tuesday around noon – it takes about an hour and a half to 45 minutes to get from our home in Wetumpka to the Kirkland Clinic in Birmingham, but we were quite glad to drive that far to keep things together. As I mentioned before, the Kirkland Clinic is actually attached (through walkways) to the UAB Hospital. But the attachment was more than physical … it was organizational. It was fairly easy for the doctors in the clinic to put you on “the floor” (as they referred to the hospital rooms).
Things went a little late at the clinic. It takes about 1.5 hours per unit for blood, and I had to get two units. This was after the half hour prep time that it took where they had me on some saline IV. Before everything, they give you some Benadryl (for allergies, I understand), and a couple Tylenol. Sometimes there is wait time also in picking up the blood from the blood bank.
Something about Benadryl that puts me to sleep. It was rare that I would go entirely through a transfusion without just falling off. Trying to work on the computer added to that as the letters and lines would run together. Carolyn got me a huge container of coffee from one of the coffee houses around the clinic, and that kept me alert and working through the transfusions. However, when we got back in the car headed home, I was out like a light.
I was my usual stiff self getting out of the car at home, and noticed a head ache coming on as the Tylenol was wearing off. I took my temperature and it was a bit high, but this is not unusual after a transfusion. I was still waking up several times each night to relieve myself in the bathroom, so I checked my temperature a couple times that night, and it was not going in the right direction. By early morning it was fairly clear that it was well over the 100.5 that they consider to be the critical point to get help.
It was early around 6 AM or so, and I hated to wake Carolyn up after all of the stress she had been through over the past couple of days. For sure, she was in a far better state of mind to get on the phone and line things up than I was.
They told us to call if I ran a fever about 100.5 … it was now over 102 and had been for several hours. Kirkland Clinic’s view of it was something to the effect that we should go to the nearest emergency room and let them “stabilize” me, and at that point then drive to Birmingham and get checked in there. I felt like we ought to skip the red tape and just go to Birmingham. Carolyn went ahead and called the generic number that they gave us. She got a generic operator (or perhaps a recording) that took our number and said someone would call back. Not exactly what we expected.
The nearest ER was at Montgomery and it would take us 45 minutes to get there and another hour (I am sure) to get checked in. Add this to the time we were waiting for the call back and going to Montgomery just did not seem reasonable – to say nothing of the confusion that it might cause in the billing. So, we decided that when they called we would insist that we just go to Birmingham and take it from there. Carolyn did an excellent job of arguing them out of their paradigm once they called back, and we took off for Birmingham. Of course, it was good that we let them know so that they could line things up.
I got checked onto the oncology floor that Wednesday and my friends there were a bit surprised and alarmed. It had only been a day or so over a week from when I had been discharged right after the final chemo treatment of the first consolidation round, and they knew I should not be back here so quickly. They started several IV antibiotics through my Hickman, which I was glad I was able to keep. And then test after test – they wanted to find out what was causing the fever so that they could better treat it.
They did not give me any Tylenol (for the headache and fever) until they determined the extent of the fever, which was the late night check, and the fever was about 103. Not as bad as before but definitely a problem and definitely a headache. By the next morning it was down some and I was feeling a whole lot better. I was convinced that all I had to do is to hold out just like I did previously, and once my numbers got up I could go home. Maybe three or four days? Well, this was optimistic thinking. Just as before, it was going to take longer for me to bottom out and recover. I am not sure if my blood numbers had bottomed out yet or not.
Medication at night (even Tylenol) combined with a fever can be a very miserable situation. I was in the chill, fever, cool down cycle that I described for the previous fever. Even though it was not as high, it was enough combined with the medication to give me some really weird dreams and to keep me from even thinking that I was sleeping. It is hard to describe the antsy feeling of not being able to stay still because it feels like adrenaline is pouring through every joint in your body. It tries on you first, but ultimately it gets through to you. I am not sure if it was the fever or the antibiotics. Joints ache, even your hair aches, what little hair I had left.
Around noon on Thursday my fever was down to 100.4, which showed some improvement over when I arrived on Wednesday. I am not sure to what extent that was the Tylenol talking, but no matter, I took advantage of it to do a little work.
On Friday it was back up again to 102 and apparently not responding to the antibiotics. Every time I thought I had it beat, I would get the chills and the cycle would start over. I could tell over the cycle when my temperature would be lowest and I was tempted to call the nurse or the PCT in and get a reading, but realized that tricking them would be kind of stupid. But it does show how my mind was working at this point.
At one point in the process they tried to keep my chills under control with Demerol. It brought some welcomed sleep.
Saturday was a big football day, so I was looking forward to that. My blood numbers indicated that I needed platelets and blood again, so they lined that up for Saturday. Fortunately, the fever got down to 100.3, which was good enough to initiate the platelets and blood. I felt pretty good but my time of being conscious was limited due to the 25Mg of Benadryl. They also put in a new antibiotic that I thought would prolong my stay since they have to let these things run their courses. But I was in no condition to argue with them. I figured that once my numbers get up my body will take care of these little bugs. If I could just maintain the status quo for a couple more days, all would be well. It would be the same as last time. Just like then, they way underestimated my recovery time. Perhaps it was my age. One thing for sure – this could not go on forever.
I am not sure of the exact day but the rounds doctor expressed his opinion that the Hickman was a good candidate for the cause of the fever. Once again, they tried everything they could to prove it, and while they could not prove it, neither could the test definitively prove that it was not the source of the problem.
As Yogi Berra used to say, déjà vu all over again. My position had not changed. I had two consolidation rounds to go and who knows how much blood, platelets, and antibiotics. I needed the Hickman … I almost viewed it as a survival thing.
I asked my nurse practitioner who would make the decision as to my Hickman, and her answer was – “you will, it is up to you.” She was totally familiar with what had happened in my previous infection. I asked her why we could not do the same thing again? Didn’t it make sense to just wait it out and when my numbers come up, then the infection will just be taken care of on its own? That made sense to me. Her response was a pleasant but very definitive: “No!” In other words, in her opinion, that was just too much risk to take. OK, I could accept that, but I did bargain for a few more days as we went into the final full week of September.
It was that Sunday night that the PCT was taking my vitals at the same time I had an afib. That is short for Atrial Fibrillation. Putting it in terms we can all understand, one of the doctors explained it to me this way. It is when the left side of your heart gets un-coordinated with the right side, and they stop talking to each other for a while. So, instead of beating in one coordinated teamwork push, they each get to flopping around for themselves. This can lead to inefficient heart function (blood flow and blood pressure). While rare, it can also lead to blood clots since the blood in the heart is not being refreshed as it should be. So afibs are nothing to just blow off.
As some background on this, the first time I ever noticed having afibs was way back maybe 30 or so years ago when I was working at Auburn University. (Yes, I am guilty of actually working for both Auburn and Alabama … sorry to all.) Back then I noticed that I felt my heart beating at the bottom of my throat, to the point where sometimes it would even tickle my throat and cause me to cough. After this went on for several days, I went to my general practitioner and he had them hook me to a monitor for several days (as I recall, three). I just did my normal things with this (rather large at the time) monitor clamped to my belt. By the time we got to that point the afibs had disappeared and so nothing appeared on the monitor. They said that they could find nothing wrong and to just let them know if it gets to be a problem again. Over the years I might have one of these every other month or so, and I know several others that also have them. So, I really did not give it any further thought.
Afibs can make a pulse monitor go crazy – the machine that takes your pulse while taking your blood pressure. Sometimes it will not record and give an error; at other times it will count both sides of the heart, which will give a double reading. I had had an afib a couple nights before this, but it must not have triggered the double count that this one did, since they did not seem to think it was any big thing then.
On this particular Sunday night it just happened I was having an afib when the PCT took my vitals. When they find a heartbeat up around the 140 level (nearly twice the normal level), they have to report it to the on-call doctor, as they do any such abnormality. This immediately led to their wheeling in an EKG machine to see what was going on. I explained to them what it was and that it was nothing that abnormal for me. I might get one every few months, but I did admit that I had had a few more afibs than that recently.
You have to admire medical people for wanting to fix everything, but sometimes it might be better to just hold off and wait. They immediately hooked me up to a heart monitor and to oxygen. The oxygen could be taken off if I needed to get up. I did not complain about the oxygen because I was getting out of breath just getting up to go to the bathroom. In retrospect, it seems like my condition was triggering off far more afibs than I would typically have.
The heart monitor did not need to be taken off except when I was taking a shower. It was hooked up to four sensor wires stuck to my side and chest, but was itself just a little over the size of a cell phone, so I could put it in my shirt pocket. It used the hospital wireless network and was monitored centrally 24x7. So, any abnormality could be immediately addressed.
Of course, I did not consider an isolated afib to be an abnormality, and the monitor was somewhat of a pain until I got it organized. They gave me a little case with a shoulder strap to keep it in, anticipating that I might need to be in a hospital gown, which has no pockets at all (and little else). I tried it but it soon wore sore on my neck. I was wearing my typical dress shirt without an undershirt (due to the Hickman), so I could put the wires through the shirt between the front buttons and the sensor in my shirt pocket. Nevertheless, I felt like I had lost two more degrees of freedom with this and the oxygen.
They also gave me medication to slow my heart down. Its effect was to totally slow me down. I would try to get on the computer to do something and just fall asleep. So, I would put it up and sleep for a couple of hours and try again. Nothing. Just dozing off all the time. This did not help too much at night when I was now trying to sleep. To say my mind was playing tricks on me would be an over simplification. I recall having the feeling that I was able to control my dreams. I have no idea what gave me this idea, but I felt (just for one or two nights) that I could think of something and then it would become a dream. I doubt that this was an accurate assessment, but when on drugs you cannot be held responsible for having gross misperceptions of reality.
“How did you sleep last night?” This was a fairly standard question that the nurse would ask every morning. Usually my answer was “great.”
“Uh, …” I could not think of how to describe it. In retrospect, I should have chalked it up to the drugs and let it go at that. But I was not thinking.
“I think I was having some bad dreams … sort of like visions.”
“What? You were having visions?!!!”
I could see a look of shock and surprise … like she was going to run down the hall and get the resident to check me out right away.
“No, no, no … nothing like that … it was more like I could think something and control my dreams, … , but it is nothing. I think it was just the drugs they gave me to slow down my heart.
This seemed to satisfy her, and she calmed down.
“Well, you tell me if you have anything like that again!”
“OK … I sure will.”
Who knows where they would have sent me if I claimed I was having visions. And I really was not. It was just the weird way the drugs were acting on my brain. It would wear off.
I can recall on the following Thursday that I tried to express my frustration to my nurse practitioner. The thought of going through this two more consolidation rounds was overwhelming. I was not making much sense … perhaps to the point of her questioning my rationality.
“OK, you are not making any sense at all. I am sorry but I have to ask you some really stupid questions since you are not making any sense. What day is it?”
This was not the easiest of questions when one day merges into another at the hospital. It is easy to lose track of the day. But I recalled looking forward to the football games, not tomorrow but the day after tomorrow. That would make today Thursday.
“Good, what is your name?”
Ah, easy one. I had not forgotten that.
“OK, one more – what month is it.”
This one should not have stumped me, and I am amazed now that it did. We were well into the third week of September, so the answer was obvious, but in my brain I was drawing a blank.
“I will help you … is it August of September?”
“August.” Why I answered that I still do not know. All I can think of is that the drugs they had given me really had me on the ropes.
This was about the time that my numbers either hit the bottom or had been there for several days and were not showing any signs of moving up. Based on my last experience I realized it could be at least a couple weeks before they would move up, and that was just too much to chance. That along with just the grueling discomfort and off and on shooting pain just about had me worn out. Once again my mental state had reached its breaking point, and once again I turned to the Lord and just threw it on Him. I was not going to worry; He would get me through this just as He had before.
With no sign of my numbers coming up or the antibiotics knocking out the infection, I finally relented on the following Thursday to having my Hickman pulled. I talked to Jonathan and Lesley on the phone, and they must have sensed my frustration at this point. I do not recall the specifics except that I was really tempted to just throw in the towel. Lesley said that I had made a comment to her on the phone at this time about how I didn't want to do it anymore and was tired of being in the hospital, tired of being poked and prodded, tired of not being at home; and that I had made a similar comment to Jonathan. This greatly concerned them, and it was clear that I was at a low point and needed some reinforcement, and they were also concerned that their mother was about to her limit as well. So they both flew in for a surprise visit. But they were the ones in for the surprise.
It was the Friday that I was going to get my Hickman pulled. Jonathan had already arrived and surprised Carolyn, and told her that Lesley was on the way. Jonathan and Carolyn were with me when it was time to pull the Hickman. They were asked to leave. It was just about then that Lesley joined them in the waiting area.
The medical people gave me the rundown as far as what to expect. There would be a local anesthetic and it would be over quickly. The chances of complications were few, but they had to go through them. The line could break, for example, but that had never happened before to any of them.
I could not see anything since they put the normal medical sterile paper around everything and it blocked my sight in order to block my breathing on the wound. I could not feel much as one of them pulled on the Hickman tube. But it seemed that she was struggling a bit. Something was wrong. Then I heard a snap … the catheter line had broken. Controlled response on the part of the medical people: “Well, that never happened before, but it has now.”
All I could think of to say was: “GET THE SURGEONS!” I yelled.
They did, and quite quickly there were a couple of them in the room. They quickly got the tube to the tapped artery out fairly painlessly, and that ended any major danger on my part. There is a “cuff,” however, that was another issue. The cuff is a round plastic disk a little smaller than the size of a Tums that the catheter tube goes through. This is something that is supposedly right under the skin – in my case it was just a bit deeper. The intention is for the flesh to grow around it, and since the catheter tube goes through the middle of it, it will hold it in place and prevent accidental displacement. In my case my flesh had grown around it to the extent that it just did not want to give up the tube, and now it was not about to give itself up without a fight. Was it was taking a cue from me? or perhaps I should be using it for an example.
“It might be best to just leave the cuff in,” said one of the surgeons.
“No problem, whatever you think best.”
“I will need to apply a little pressure to stop the bleeding.”
I can only remember thinking that maybe he was on top of the bed pressing down on me with all of his might. But no, he was just doing a good job of first aid – he had to hold it until the bleeding stopped.
I was kind of thinking that perhaps they should shoot me with some more Novocain, but in retrospect there would not have been time for that to take effect.
He said: “I think it might be best to go ahead and get the cuff out while we are in here.”
“Yes, please go ahead and get it if you can.”
Again, a good decision in retrospect, but things were getting a bit hard to take. Good thing I could not see it, I would have passed out for sure.
When he finally got it out he showed it to me. Actually I could not see any plastic as the flesh had totally grown around it. That was the problem, but that was also the way it was supposed to work. Some solutions cause problems.
A little more pressure after that and they stitched it up and put a bandage on it.
Good bye Mr. Hickman, it was nice knowing you – you have served me well. Even if I knew that I had to go through this again I would gladly get another one. In fact I asked for one, but they gave me another alternative, as we will see later.
When Lesley and Jonathan came in with Carolyn they found me largely in a daze. It had been quite an ordeal and I was glad that it was over. I am not sure just what they put in my IV at this point, but it was sufficient to keep me comfortable, albeit not very good company at all for Carolyn and the kids (please bear with me if I call my grown and independent children kids).
Over the next few days the kids were a tremendous blessing – an answer to my prayers. Obviously the past week was one of those few brief periods of time during the entire ordeal when I had left my pledge to make it an adventure. With any adventure, you have to take the bad with the good, and it is overcoming the bad that actually makes it an adventure. Like going sky diving, rocky mountain climbing or spending 2.7 seconds on a bull name Fu Manchu.
Not that the story of the Hickman was over and we lived happily ever after. On the contrary, the master of surgical brutality came back to check on me the next day. Oh, yes, everything looked real good. “Oh, by the way, does this hurt?
Lesley commented later: “When he smashed his fingers in the wound, you squealed and had a look on your face like you were going to smash him.”
It was just a look – I never had that in mind – I realized that this was just par for the course and essential to an effective recovery. It did not hurt for long and my good spirits were back as we planned to watch some Bama football the following day. That was also a pivotal day for my temperature to drop, and my blood numbers to begin to rise, so perhaps pulling the Hickman was the thing to do. In any event, the schedule was for me to go home that following Monday, the last Monday in September.
Obviously during this part of the ordeal it was not possible for me to work full time. There were times when I was on the heart slow down meds that I sent some e-mails to the office that trailed off into the nonsensical. They e-mailed Carolyn: “is there something wrong with Dave?”
I put in several leave days during this month and got them to not assign me anything that was time critical. There was still plenty of work and I tried to put in at least a half day on most days, and to catch up over the weekends. The upside of being in the hospital is that between the interruptions there is absolutely nothing to do other than watch TV, and watching that was, at times, as painful as anything else in the hospital. Then there were weekends that to me were just like any other days. I would take time off on Sunday to sing, spend extra time listening to the hymns on my iPod and sing along with them, and pray especially for those who were praying for me. But there was still plenty of time to catch up on lost work time during the week, and if not, then I would put in for medical leave. God blessed me greatly with a job that I could do in the hospital – no doubt it was part of my healing therapy.
Chapter 9. Back Home Again Before Consolidation Round 2
Thus says the LORD : "Cursed is the man who trusts in man And makes flesh his strength, Whose heart departs from the LORD.”
– Jeremiah 17:5-6
It was the last Tuesday in September when I got home. I obviously survived the first round of consolidation, but I was not in any great mood to jump into the second round. I spent the first couple of days at home sleeping half of the time. But by Friday I was back to my work and feeling a bit stronger. My strength was coming back a little at a time. On Saturday I sent out the following e-mail:
To all who have e-mailed me recently:
First let me express my appreciation for your concern and your continued prayers. I will try to respond to your e-mails as soon as I can.
I have had a few setbacks recently and really wanted to hold off on responding to you until I had some good news. But also to a large extent it has been impossible for me to respond on account of the drugs that they had been giving me. One in particular was to slow my heart down and it ended up just making me sleep most of the time.
But the Lord got me through all of that and more, and I seem to be gaining in strength each day, now that they have me off of that stuff and I am at home.
My main doctor is going to give me a minimum of two weeks to recover (perhaps more) before getting into the second round of consolidation. There will be at least one more after that. We are expecting these next two will be uneventful compared to the first.
I know all of you have been taking the time out of your days to pray for me, and you cannot know just how much I appreciate that. The Lord is seeing me through.
In His love -- dave
Green pastures are before me, which I have not seen;
Bright skies will soon be over me, where the dark clouds have been.
My hope I cannot measure, My path to life is free,
My Savior has my treasure, And He will walk with me.
-- Anna Waring (1850)
This excerpt was from Anna Waring’s song entitled "In Heavenly Love Abiding" -- third verse. It helped me out of my depression when it seemed that literally everything was going wrong. The Lord provides what we need when we need it ... it is up to us to remember that it is “in His time,” which was another hymn that gave me great strength. Living or dying was really secondary at this point, but I had an obligation to God and to my family to give it my all and to continue the fight for life. And, of course, I could not let my medical friends down after all that they had done.
I had a pretty quick appointment coming up with Dr. O on the following Thursday, the first day of October. When we got there he seemed ready to accommodate my concerns over the next consolidation treatment. I was a bit tentative getting up on the exam table. He said he thought I was looking a little weak. My numbers had come up but they were not anywhere close to normal yet. I was about half way in between critical and normal. We had started the first round of consolidation when I was not that much better than that. It was important to strike the blasts before they could get a foothold. But this time he figured I would need about a couple more weeks to recover. Perhaps more for my morale than anything else.
I had lost a little weight and was still tasting the metallic flavor of chemo. I (mistakenly) complained about it. I really should not have done that, and should have delighted in losing a few pounds. Dr. O prescribed some white liquid that had some steroids in it to increase my appetite. It tasted a bit chalky, but it was only a couple tablespoons per dose once a day in the morning, and I could chug it down pretty fast. It worked; that is all I am going to say about it right now. Do not take this stuff if you do not want to gain weight.
We set our next appointment for review in about a dozen days – the second Monday in October. I was feeling just a little better each day, some days the improvement was imperceptible. But I was able to walk a little bit further each day. The weather was not behaving, but as long as it was not raining I would go out for as long as I could, which was not much since it was a wet and cold winter in Alabama just like everywhere else.
We got back into our routine of Monday and Thursday labs at the Kirkland Clinic. On the following Monday my blood numbers were generally improving, although a couple of them explain why I was still a bit tired, especially right after going out and getting some exercise. So far so good -- my natural system needed to get me into shape so I could take the next treatment. There was no question that the initial consolidation treatment was as bad as the final induction treatment, but only because they both included a very similar infection. Dr. O had warned me that the consolidation treatments might be more severe than the induction treatments, since they could be more intensive. I really could not tell if this was the case or if the problem had been caused by the fact that I was not starting out from the same blood numbers point.
As the first full week of October progressed I asked the people at work to give me some more challenging things. They had given me plenty of non-time critical documentation when I was hitting the bottom since I had emailed them and told them not to give me anything that was time critical. But now I was feeling good enough to take on some more critical stuff, and I felt like I would only be getting better up to and including the actual next round of chemo, since it does not really hit you until several days after the round is over. This work might consist of proposals with hard deadlines or reports that had to be in by certain dates. I told them I expected to be good for at least the next two or three weeks -- until several days after the next consolidation treatment, and if there were no complications, that might not be an issue either. One thing that I had been doing gradually since day one was to turn over as many of the routine things that I did to others just in case I got disabled. I felt that I had that very much accomplished at this point. Most recently I had been writing articles for our web site, a seemingly endless task, but one that is not time critical.
Once at home I started monitoring my blood pressure, pulse and, of course, temperature quite closely. I was on blood pressure medication close to 15 years ago when I was overweight by about 25 pounds. I was able to get off of that medication by losing the weight and being more methodical with my exercise. There is no telling what the chemo is going to do (or had done) to my heart and cardio-vascular system at this point, so I stayed on the medications that were prescribed. They had allowed me to get off the Diltiazem while in the hospital, since it seemed to be making me drowsy all the time. I figured once I got over the chemo and got strengthened up, that would be the time enough to see if I could get off the blood pressure medication, which did not seem to be overly reducing my blood pressure.
The following documents the information with regard to my blood pressure that I put together to present to Dr. O at my next visit:
Metoprolol Analysis for David B. Brown.
Generally I was feeling dizzy when standing up and wanted to determine if the problem was related to the 50 Mg. doses of Metoprolol that I was taking twice per day. So, I got off of it for just three days (October 6-8 – see attached spreadsheet). I felt significantly better (although that could have been due to other factors). My blood pressure went up to essentially normal, although my heart rate was clearly higher than it should have been. Note the consistency of the readings despite the short test period.
I went back on the Metoprolol beginning Thursday night and its effect was quite clear and immediate. Systolic, Diastolic and heart rate were all down between 11% to 13%. Again, the readings were fairly consistent over the three days. The problem is not in the averages but in the fact that about half of the readings are about 20% below normal.
I will continue to stay on the Metoprolol and continue to record the results and discuss them with Dr. O on Wednesday.
I am not recommending this procedure; I am just reporting that it was what I did. In retrospect it seems like three days is not a sufficient test period for such a thing. I am fairly convinced now that my feeling better was due to my blood numbers coming up. This mainly because the dizziness did not return when I got back on the Metoprolol. I do strongly recommend that patients get their own blood pressure measuring devices and work with the doctors on fine-tuning the medication. It has been my experience that the blood pressure readings that were taken on me at the doctor’s office and in the hospital were not typical of my normal readings. Decisions should never be made on one reading unless that reading is in the critical zone and requires immediate action. It is important that the patient record the date, time of day, the blood pressure reading and the pulse rate for several readings per day (at least three), and give this to your doctor to consider. Ask your doctor what s/he considers to be a critical point reading at which you should definitely call for help, or at what point a series of high or low readings would trigger your calling for an appointment.
The combination of low blood pressure and other lasting effects of the chemo kept me from being able to just go out and walk indefinitely like most normal people. I could feel myself getting weak after walking just a block or so. The important thing was that each day I would add a little more time and distance to my exercise, but not over-do it.
The normal person can control blood pressure by exercise. Take your blood pressure before and after you work up a sweat. If you do this kind of work-out routinely you can generally lower your blood pressure. Now, I am not talking about a chemo patient now – I am talking about a normal person … or perhaps someone who is in total remission and has recovered from chemo. Always consult your doctor on any medicine changes – I am not giving medical advice, only stating my personal experience. In my case at the present time (just a couple weeks after a consolidation round) the entire idea of working up a sweat was so far out of the question that I was not even considering it. I could only walk a block or so, and any strenuous work could cause me to pass out (although it had not at this poing). As my son Jonathan said: “There is no sense in getting through all this chemo just to have a heart attack.”
The doctor said it would take a week for the appetite stimulant to kick in – it only took a couple of days. All of a sudden I am in a different world. Not only am I supposed to put on a few pounds but I am hungry all the time. Carolyn said it was scary how I was eating everything in sight. Essentially I was eating about twice what I normally ate – like two sandwiches for lunch rather than one. And then, all the cookies and other junk I could stuff. Not a very healthy situation. But I enjoyed it for a while, and the pounds were added fairly quickly.
The rest of that week was otherwise uneventful. On the Sunday before my appointment with Dr. O I sent the following as part of an e-mail to a friend regarding the infection after my first consolidation treatment:
I could not talk to anyone or e-mail -- at this point it is mainly a blurr. The Lord got me through -- hundreds of people were and are praying for me -- their prayers were answered. The best medical minds were on top of it, thank the Lord.
The blood tests on Monday were as expected but Dr. O had decided that it would be best for me to get a couple units of blood to help build me up for going back for the second consolidation round the following Monday. So we stayed in Birmingham and got the transfusion at the Kirkland Clinic. We did have a quick chance to see Dr. O and I showed him the blood pressure and pulse readings. He felt it best that we should just try cutting the dosage of the Metoprolol (blood pressure reducer – beta blocker) in half.
As this second week of October progressed I felt surprisingly improved. The blood certainly helped, as did the modification in the blood pressure medicine. I was able to walk a good mile and a half and to go up the hill a couple times – a good sign my strength was returning.
Jonathan had business in Tuscaloosa the following week but he came in from DC on the Wednesday before that, so we spent some time working outside. It did not take long at all for me to realize that while I felt good, my stamina was zilch. The least bit of effort had me to where I needed to rest. So, for the most part I just watched while he did some major work around the house and in the yard. It was chilly so we did not spend too much time outside.
It was the following Monday that I was originally scheduled to start the next round. Dr. O said that it would help if I could take just a few more days, so he hard wired me into the hospital instead for the following Friday, which was the next to the last Friday in October. The plan was for me to get in Friday and have a Peripherally Inserted Central Catheter (PICC) line installed to serve the same purpose as the Hickman had before. The chemo itself would take five days so I would be home on Wednesday of the next week.
Waiting for Friday to get here I continued my walking at home and got up to almost three miles. So, I was feeling as good before this second consolidation round as I had felt for a very long time, perhaps since the ordeal began back in May. I was glad that I had a few more days to enjoy before going into the hospital, and I took advantage of it. Also, I noticed some other little things were returning, that most normal people take for granted. For example, being able to reach down and wash your feet, and being able to put your pants on in the way that you have always done it. Both have to do with balance, which is something you cannot take for granted when neutropenic. One fall can put you back in the hospital for a long, long time.
Feeling good makes you optimistic. I felt that this second round would go without incident, and it did … almost.
Chapter 10. Second Consolidation Round
Wherefore I take pleasure in weaknesses, in injuries, in necessities, in persecutions, in distresses, for Christ's sake: for when I am weak, then am I strong.
– 2 Corinthians 12:10
The good news is that they had a room ready for me when I arrived on Friday at around 3:30 PM. Jonathan finished his business on Thursday and joined Carolyn and I in going to the hospital. They got me my last meal for a while outside of the hospital food. Another bit of good news was that tomorrow (Saturday) afternoon Lesley was going to join us from California.
The bad news is that the PICC nurses were so busy (doing a lot of emergency things) that the earliest I could get mine was Monday. So, I had to get one of those temporary IV ports in the arm in the interim (the kind that max out at four days). But the nurse did a great job (albeit on his second try) and it really was not that bad. It would only be for a couple days. Generally I favor the female nurses since they (again, generally) have a better feel for your veins. I have had some of them miss a couple times, but I am speaking as a general rule. I asked one once how she had done such a great job to almost painlessly hit a vein that I could not even see, and she showed me how she could feel it. I couldn’t, but she could. Generally women have much more sensitivity in their fingers (I fear I am making a sexist statement, but reality is reality if not politically correct … feel free to make your own comparison).
They went ahead and started the saline, and right after that it was chemo time. As we expected, the chemo itself went without incident. Jonathan had to leave early on, but Lesley was able to stay through most of the treatment days.
On Monday the PICC nurses came in to insert the PICC in my upper arm. Their reputation preceded them: “The PICC nurses are all business” is what I recall from one of the male nurses. No problem – glad to hear that they took their responsibilities seriously.
“We have checked everything over and it needs to go in your right arm.”
What? I gave them some token argumentation after which they said that they could put it in my left arm but it would not be as good. OK, good enough for me – put it in my right arm where it will work best.
The process was a lot simpler than I thought. They start out with a local. They used a sonogram machine to see the line moving through the vein as they pushed it in. They said I would feel some things, but I do not recall feeling anything except the Novocain. I was not watching, as usual, so cannot describe the procedure in detail. But it was quite clear that they knew what they were doing as they moved it up the arm vein into the major artery, and adjusted it so that it was in the right place. Like the Hickman, it had two lumens that were consolidated into a single line with two chambers. They had me get an x-ray of it after that and one of them came back to make a slight adjustment.
The only chemo side effect I started to come down with during the process itself was to get a bit gassy. The digestive system is the first to be affected, but it was easy to control with Simethicone (GasX). I was still eating everything in sight, but fortunately the hospital meals were finite, so it was easier to control. I did want to keep my appetite and was still taking the white liquid.
They started using the PICC immediately and it worked great and painlessly. My only concern was the changing of the dressing on it. However, when I came into the clinic for labs or infusions the nurses they would usually take care of that. There was a little blood leakage the first few days, but the skin soon healed around it. It had a transparent dressing like the Hickman so that the condition of the entry point could be seen easily.
After being so long in the hospital on previous visits, the five days (Friday through Tuesday) on this round went by very quickly. Lesley was there most of the time to keep me company, and this gave Carolyn a much needed break to catch up on things for a few days.
We had to go back in to the clinic the next day after being discharged from the hospital to get a shot that speeds up the platelet renewal process. As I usually did on these hour and forty minute trips (given good traffic), I either worked on the computer of got caught up on my sleep. Since the side effects of the chemo were just starting, the trip was quite enjoyable.
I recall thinking that the Lord had gotten me through the first consolidation round, and I was feeling almost normal from about a week or so before I went in for this second consolidation right until now. While I was anticipating a little battle coming up, as long as my temperature behaved itself and I did not get an infection, I should be in good shape. As Halloween came and went I began to feel the metallic taste in my mouth and the totally burned out feeling. Normal standing up became treacherous, producing that spaced out effect … spots in front of the eyes, loss of peripheral vision, somewhat dizziness. I just needed to hang in and all would be well. The Lord never gives us anything that we cannot handle.
But He expects us to do our part. So I jumped on all of the countermeasures – from top to bottom – rash and skin cream, lip medix, salt and baking soda mouthwash every couhour or so, Nexium, GasX (as needed), eat plenty of fiber and protein, no visitors, no lettuce, no bananas, paper towels after washing your hands, and washing hands after touching anything that might have germs (just about everything), using a paper towel to touch things like door knobs, and on and on … you get the picture. I had been through it once, this time I was going to handle it.
But no matter how many precautions and remedies you may take, you are quickly humbled as your natural defenses are taken from you one by one. The ability to fight back physically – I often thought about what I would do if I had to defend myself or Carolyn. This was never a problem with me before, and I never really gave it much of a thought. Not that I ever felt like I was some great warrior or anything. But in my mind I had always felt confident that I could handle most situations … now I knew that I could not. I might pass out just from the adrenaline. Not only was any real physical exertion impossible at this point but so was my ability to fight off infection … something that normal people just take for granted. Well, I did the best that I could with what I had; I just had to trust the Lord to do the rest if it was His will; and if not then who was I to withstand Him?
I tried walking, and the best I could do as November arrived was about one time around the block. Just as I had gained strength a couple or three weeks before, now I was losing it, and basically due to the same cause – the blood numbers. One cycle around the block left me exhausted. I would come in, relax, and fall asleep. No matter; it was great to be home.
Again, we got into the Monday-Thursday cycle of labs (blood test) and transfusions as needed. The first one was the first Monday in November. We made it through that one without needing a transfusion, but not through the Thursday one … which was good because I was getting to the point where just getting up was getting me out of breath and bumping my heart rate up. The numbers indicated that I had just about bottomed out. This was 9 days after the completion of the chemo treatments. (Things always seemed to take a little longer than expected for me.) The good news was that they could give me both platelets and blood that Thursday and so we would not have to come back on Friday (which is always a bummer). So I was feeling pretty good about things.
It was late that week – either Friday or Saturday that I was trying to get over what seemed to be some minor constipation. I apologize for going in this direction with such detail, but this might be of assistance to someone. (If you do not want to read about it, skip to the next paragraph.) The big problem arose when after a bowel movement it felt like the hard feces had just torn my insides out. This was strange because I had not taken any Imodium or anything like that (which, you might recall had given me problems very early on). This was the worst of that type of thing that I had ever experienced – I checked and there was no blood, so I thought the pain would disappear soon, but it persisted. Fearing another such attack, I took a stool softener and hoped for the best.
But my temperature was staying where it belonged. I thought – if I could just make it another week or so. But it was not to be.
Chapter 11. The Unit
They mount up to the heavens, They go down again to the depths; Their soul melts because of trouble. They reel to and fro, and stagger like a drunken man, And are at their wits' end. Then they cry out to the LORD in their trouble, And He brings them out of their distresses. He calms the storm, So that its waves are still. Then they are glad because they are quiet; so He guides them to their desired haven. Oh, that men would give thanks to the LORD for His goodness, And for His wonderful works to the children of men!
– Psalms 107:26-31
It was the following Sunday, November 8th and Carolyn had gone to church when I took a few temperature readings and realized I was in trouble. The limit was 100.5, and I was well over that. I am not going to say that we were pros at this now, but based on the last panic, she already had everything packed and ready to go. When she got home we decided to skip the warning call and any potential argument that would arise from that, and just head for Birmingham and once we got close enough we would call from the car and let them know we were only ten minutes (or so) away.
It worked, and we did not have any problem getting on the floor. I got checked in that Sunday afternoon and the medical people there were familiar with my case. I guess they figured on doing what they did last time, re-run the tests, adjust the antibiotics accordingly, and if all else fails, pull my PICC. So they started pumping stuff to me (mostly antibiotics) in my PICC, which was painless. My thoughts were about the same … just tread water and stall things off long enough and when my numbers come back up, I would be home free.
There was this persisting thing with the pain from the bowel movement a couple days ago. I decided to get more aggressive with it and asked my nurse for a second stool softener for that day once I arrived at the hospital, since it seemed like I was getting constipated again and I was still not over the pain from a couple days back. They had no problem with this, since constipation is a fairly common side effect of chemo.
Sunday evening, Sunday night, Monday morning, Monday lunch … all seemed routine … I had been through it all before, and I was not feeling too bad, except just going to the bathroom was enough to get me exhausted. I did have an afib (atrial fibrillation) but that was something that had picked up a bit even toward the end of my last visit. I am thinking that I was having one when they took my afternoon vitals, but to be truthful, I just do not know. Because I had the heart monitor on before they put one on me as soon as I got into my room, and so they had my heart rate and probably several other things real time.
All that I recall was that it was dark and I was trying to get some sleep when a medical doctor came in and seemed to be trying to comfort me. “It is nothing to be alarmed about but we feel that you would be better of getting treatment in the Intensive Care Unit. … bla bla bla,” – I cannot really recall anything after that, although I know he must have talked for a good five minutes, probably trying to keep me calm and occupied while the gurney folks were coming to get me.
It was probably the condition I was in that did not lend itself very well toward comprehension. But you know, when you do not believe there is much wrong with you and someone comes in and spends five minutes trying to comfort you … that could be alarming.
OK, I buy in. Whatever. You are the doc.
“They will be in to pick you up shortly.”
The nurses (and perhaps everyone there) just called it “the unit.” As one of the male nurses expressed it after I got out: “Oh, man, I heard you had to spend a couple of days in the unit?” Not Intensive Care Unit, not even ICU, just “the unit.” Kind of like solitary confinement, or perhaps the cage that they put some of the “Bridge Over the River Kwai” soldiers in. “The box.” Just much too awful to call it by its full name or even its initials.
On the other hand, I just do not remember being that concerned. It was much like when I passed out at Gulf Shores with encephalitis and they took me to the hospital in an ambulance with the siren blaring. I kind of thought – wow, this is neat, I never thought I would get to ride in an ambulance with the siren blaring. Why all of this effort for me? I’m OK. It is probably a denial defense thing.
I mentioned before that I learned not to wear jeans in the hospital – not very comfortable. I was wearing my improved more comfortable garb – sweat pants and a short sleeve shirt to enable easy access to either the Hickman or the PICC. But a shirt like that is not even allowed into the unit. I had to don (or un-don … if that is that a word) a hospital gown before they would even transport me.
And so it was – they took me for a ride in a mobile bed – I cannot remember getting into it, but do remember their getting me out. Not sure what floor or even what area of the hospital it was in. I learned later on there were several “units.” They said I was probably in the cardiac unit because apparently they felt like my issue was with my heart. The symptoms (to put it in plain words) – my heart rate (pulse) was twice the normal, my blood pressure was half the normal and my fever was going in the wrong direction. The diagnosis was septic shock. But they did not explain any of this to me at the time. Or, perhaps they did and I just did not “get it.”
When I got there I did not get out – they have this neat way that they move you from one bed to another by lifting the blanket under you. Teamwork.
First order of business … the rules of the unit. Quite a bit different from the floor. There they encouraged you to walk and do things for yourself. Here you did very, very little for yourself … I can about number them on one hand.
“No walking around. In fact, no getting up. At all.”
“No, don’t even think about it – there is not even a bathroom in the unit rooms. Bed pan and urine jars.”
“How do you eat? (I always ate sitting off the side of the bed.)”
“No, you have to use the bed tray.”
“Now, first thing we have to do is to wash you off. This is something that we do with everyone who comes in here. It is necessary to keep everything sanitary in the unit.” She went on and on for reasons that puzzled me.
“No problem” was my reply – I had been way too out of it to get a shower since I arrived. I really needed something, especially if they were not even going to let me get up.
It was done quite discretely. I stayed under the sheet with my gown on and several sets of hands with pre-packaged soft cloths scrubbed me down all at once and then dried me off. Felt really good. My main concern was keeping them from hitting my PICC, but my IV had come in with me and they were well aware of the issues with that. I just kept my left hand covering the PICC entry on my right arm just in case.
Next order of business … I asked for one of the urine bottles. OK, they got me one and then vacated the small room (actually more of a stall). That was nice of them.
Now, let’s see … would be no problem if I could just sit up on the side of the bed. But they had it arranged so I could not even cheat. The IV was hooked up and the IV stand was placed directly at the head of the bed, so I could turn over a little but could not sit up.
I did not do too awfully well the first time, but like everything else, necessity is the mother of invention and with a little practice, I figured out a better way that kept the bed dry. It can be done.
When the nurse returned I hoped to maybe lodge a protest or get a clue …
“Do you have any suggestions on how … uh … without sitting up?”
“No, but we can get you a catheter and you won’t have to worry about it at all.”
“A doctor will insert it for you … it might hurt a little bit, but after that ...”
Oh, now I get it – it did not take me 2.7 seconds to think that over …
“No, I think I will take a pass on that one.”
“That is what I thought you were going to say.”
Perhaps she was joking or figured I was in much worse shape than I thought I was … whatever … it was kind of an amusing interlude.
Once things settled down Carolyn came in to visit. The unit’s visiting hours were strictly observed as opposed to the floor where you could hang around visiting 24x7 if you wanted.
“Did you know that they moved everything out of your room?” Carolyn asked.
“No, I don’t know anything.”
All I could figure is that they were not expecting me back … at least not in the near term or else it would be easier to just hold my room. Hmmmm. But at this point other things were of concern – like, where is my computer?
Carolyn and Jonathan went on up to the floor and were told that all of our stuff was safe in a storage room. We were told that this was just standard procedure for someone who had to be moved out. Under ordinary circumstances it would be no problem. Carolyn quickly located everything and got the computer to a secure place.
It was interesting when the unit doctor came in and there was some mention of a computer. I am not sure of the context here, I only remember that the doctor said: “Well, you won’t have any need for a computer in the hospital.”
No, no, no – I was not about to tell him that I had maintained a full time job over the past four months …but that was classified information and he did not have a “need to know.” I mentioned this jokingly to Dr. O later and he said that some of the doctors just don’t get it. Different people have different therapies. No problem – in any event, there was really no time in the unit to get anything done, so we kept the computer out.
Something I noticed almost immediately in the unit is that announcements over the intercom come on your TV speaker. The TV speaker is on a hard-wired remote controller. The announcement would just over-ride the speaker if you were watching the TV. Worse yet, it would override nothing if you had the TV off. I guess this was to be sure that everyone heard the intercom announcements, especially when it was the end of visiting hours. Not sure what other functions it might serve except if there was an emergency anyone in a patient’s room would be sure to hear about it.
There is really not too much I can recall from my stay. I know they put me back on Diltiazem and upped my Metoprolol to 50 Mg. This combination is what sidetracked my brain last infection, and I guess that is why I cannot remember much from this stay. In addition, I have no notes because I did no e-mailing for those two or three days.
Some things I do recall. Either the first or the second night the doctor in charge came in and gave me a rundown of a lot of things using terms that I could hardly understand. But then he said: “The bottom line is that you are a very, very sick person.”
I got the idea that he thought I was just not taking him seriously enough. Perhaps I was being a bit flippant; I liked to keep it light with the doctors. I am not sure what it would have accomplished had I broken out in a cold sweat. But I really did not have anything to worry about. I had been close to the edge before, and the Lord had kept me from going over the edge. Why would He do that if He was just going to let me fall over this time?
My theory was that they caught me with an afib. It produces the same effects that they were concerned about. Your heart is not beating efficiently, so it will show on the machines both a very low blood pressure and a high heart rate – actually about double since each side of your heart is now beating independently. Talking to one of the doctors later I suggested that the afibs might be triggered by either the chemo or the antibiotics. She thought it was more likely to be the chemo.
Even with the afibs being triggered more often, they were brief events. Everyone in the unit was hooked to a machine that took our blood pressure every 15 minutes or so around the clock. You got used to it – I can only remember it waking me up a few times. And, of course, I still had the heart monitor on. So, I am sure that when the afibs quit, they had nothing left to really work with. They must have diagnosed it as recurrent afibs that could be controlled by the Metoprolol/Diltiazem combination. I am thinking that my fever probably moderated somewhat as well – still present but perhaps moving more toward the low-grade category.
In any event, they declared a day or two later that I no longer needed to be in the unit. I had been there from late evening Monday night through about noon on Wednesday.
Compared to the unit anything else I would say about this phase of my hospital stay will be anticlimactic. But there might be some interesting details, so please bear with me.
For one thing I made it out of the unit just in time for those stool softeners to really kick in big time triggering a major bout of diarrhea. I was convinced that it was not something I had eaten since I was only eating the hospital food at this point and it was very well controlled. I would guess I was only eating about half of what they brought me for the most part. The metallic taste had zapped my appetite, and I was no longer on the appetite stimulant.
I was just glad that I was now back on the floor where I could take care of my own needs again. It was bad enough to have the nurses have to take care of the normal junk – to ask them to deal with diarrhea would have been intolerable to me if not to them. I know that whenever I apologized for putting them through that, they would say that it was just part of the job, and I greatly appreciated all that they did for me while in the unit.
In retrospect, there are two possibilities here that neither I nor the medical people could resolve as to which really occurred:
· I was actually in septic shock and the total treatment that they provided in the unit was sufficient to pop me out of it in just a couple days, or
· The condition of low blood pressure and high pulse along we an increasing fever was caused by some persistent atrial fibrillations that I was having which caused the first two symptoms, while some unknown source infection caused the fever.
I guess at this point it really does not matter. The Lord once again pulled me through whatever it was.
Chapter 12. Back on the Oncology Floor, Then Home Again
Look at the birds of the air, for they neither sow nor reap nor gather into barns; yet your heavenly Father feeds them. Are you not of more value than they? Which of you by worrying can add one cubit to his stature? "So why do you worry about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin; and yet I say to you that even Solomon in all his glory was not arrayed like one of these. Now if God so clothes the grass of the field, which today is, and tomorrow is thrown into the oven, will He not much more clothe you, O you of little faith?
– Matthew 6:26-30
I am not sure exactly what the time was, but it was the second Wednesday in November when they got me back on the main hospital oncology floor. I am not sure just what it was that convinced them that I was no longer in danger, but I would expect it was the combination of relatively normal blood pressure and pulse readings over the second day that convinced them to return me to the floor. I would expect that they felt that the combination of Metoprolol and Diltiazem were sufficient to keep me stabilized. It appears that my temperature had come down some, although I still had a low-grade fever.
Since I do not have an e-mail record of the following Thursday, I would guess that the Diltiazem was keeping me quite dreary. I can recall having a difficult time staying awake and requesting them to reduce the Diltiazem dosage. Especially while trying to work, I would be typing on the computer and just fall asleep. When they lowered the doasage things were not as bad. At the same time my blood numbers were starting to improve, which was extremely welcomed. By Friday my natural defenses seemed to kick in enough to get my temperature to be normal on several successive readings, and they were targeting Monday for getting me home.
There was only one problem with this, as far as I could see. They had started some new antibiotics IVs that were yet to run their course. It seemed to me that it would be necessary for me to hang in at the hospital until they had finished being administered. I knew that stopping antibiotics in the middle can be quite detrimental in enabling the bacteria to become immune to the medication. In some cases I had finished up a given antibiotic run by taking its oral counterpart at home. However, there was no oral equivalent to what I was on now. But they informed us that we could administer the IV at home through the PICC, so this would not be a problem. That would be something new.
But then there was the persistent headaches and diarrhea – I was still not feeling normal even for this stage of things. Something just wasn’t right. All things considered they decided to hit me with platelets and blood on Saturday in preparation of my going home on Monday. This was quite welcomed, especially since I still had my PICC.
Sunday night I had a setback as my temperature starting going up again, and so they kept me in for observation on Monday – they were not going to let me go home with a temperature and have to come right back. By Monday afternoon’s reading it was over 101. Once again they could find no definitive cause for the fever, and so the PICC was now the number one suspect.
I had just gotten the PICC about three weeks ago and was not going to just voluntarily give it up. And besides, I needed it if I was going to continue the antibiotics at home. Monday night I wrote to Jonathan: “Yes, the darkest is always before the dawn. I am looking forward to some good things. Don't worry about my morale – everything here is a big joke. I am enjoying it.”
I probably did not communicate it right, but I was having fun with the medical people despite my distress. They were doing everything that they could, and they were dealing with problems much more serious than mine. Perhaps I could make their lives a bit easier by making light of my own situation.
Nevertheless, between the headache and the diarrhea I was getting a bit beaten down. When the rounds doctor came in on Tuesday he asked me why I was not looking cheery. I had generally been quite upbeat with this particular doctor and so appreciated his noticing that I was not feeling so well. I told him that I had diarrhea for nearly a week now. I had asked for Imodium several times but it seemed that they always wanted to get one more sample for testing. His response to the entourage was not what I had expected – he told them to be sure that a certain antibiotic was continued. I kept after them and they finally got me some Imodium after getting one more sample on Tuesday.
I was finding it hard to get my normal exercise. It was a problem of timing of when I was feeling strong enough to get out and not hooked up to the IV machine, although there were a few times when I just wheeled the IV system along with me. Perhaps it was just laziness on my part, or maybe the Diltiazem. But I had been about a week without getting out of bed except to go to the bathroom (and in the unit not even that). When I did walk my bones ached much more than they typically did.
My message to Jonathan and Lesley on Tuesday was quite informative and pithy: “Am feeling better today, although it could be the Tylenol covering the headache. Sent me out for two tests – a sinus CT scan and a heart echogram. Temperatures seem back to normal. They are not going to pull the PICC today. Just taking it one day at a time.”
I recall my (friendly) argument with the rounds doctor who felt that the PICC should come out: “What is the downside of just leaving it in for one more day.”
“Well, one more day will probably be OK,” she said, “but we obviously cannot go on playing this game forever.”
“I need to stay in a couple more days to get these antibiotics to finish out.” There was one in particular that they wanted me to finish in the hospital, and another one that I could finish out at home.
Temperatures do not count if you are taking Tylenol. So they will keep you off it for about 12 hours in order to assure that they are getting a good reading on the temperature. I found that its effects lasted about that long, so that was no real problem as far as keeping my headache under control.
Tuesday night was another one of those déjà vu times when I once again just laid it all on the Lord. I was pretty much resolved that they would pull my PICC and I would just need to spend some extra days in the hospital letting the IV antibiotics work themselves out. They even went so far as to order up an IV started in my arm so it would be there when the PICC was pulled. I argued with the nurse a bit that it was not a given that my PICC would be pulled in the morning.
“I have to follow orders,” she said.
I just could not see starting a big row about it. They were just trying to do what was best and to be ready for any eventuality. So I relented.
The Lord must have had other plans, however, because my fever was gone that night on two successive readings by the PCT. At some point my bones had produced sufficient white blood cells to overcome the infection, and I am sure the doctor and nurse practitioner were delighted to get rid of me, PICC and all. Once again, saved by the restored natural workings of my body, and preserved long enough by the antibiotics and the grace of God to enable that to take place. The IV in my arm never got used, but I was not about to complain when they took it out.
I still had some mild diarrhea, but the Imodium was kicking in and it seemed to be getting a slight bit better. I expected that it would follow me home, and I was just not going to complain about it now that the target was getting me out of there by Thursday. Everything else was back to normal, the headaches, Afibs, fever all seemed to be gone. Thank the Lord for the natural medicine that our blood provides us. This was the Thursday a week before Thanksgiving, and Lesley had planned to join us with her husband Chris for the holiday, so I was looking forward to that.
One thing I always did the last day at the hospital was to get the nurse to change my dressing – before on the Hickman, but now on the PICC. I could almost change the dressing on my Hickman myself because it was on the left side and reachable by both hands. Not that I did, the few times we had to do it at home Carolyn took care of it. But at least I could change the caps. The PICC was a different matter being in my right arm. I could not even flush it out or anything. The nurses on the floor were very pleased to help.
Being able to keep my PICC allowed me to continue to take my IV antibiotic at home. I got home on Thursday and the next day a home nurse came out of Montgomery to show us how to administer it. The trick of the home IVs were that they came in pressurized bottles. So they did not have to be hung to be gravity fed or to run through the IV pump. I recall only having to use them for about five days or so, so they were only a minor inconvenience.
After a couple days at home the diarrhea began to abate … could be just getting on normal food and off most of the medications. No telling.
My attitude at this point can best be seen by an e-mail I sent to my kids the second day at home – the day after the home nurse stopped by.
am still not convinced as to why I was in the Unit, but I have an idea it had
something to do with my heart. The big problem is that the heart doctors
feel like they have to do something, and I am convinced that what they do is
not necessarily beneficial. I do not think they know what chemo does to
your heart. Their fix is probably not as good as just leaving things
“Example, I have had afibs all my life. They have not killed me yet and I doubt they will. Well, their 24x7 heart monitor tells them that I am in critical condition when I go into afib and so they give me stuff to slow my heart down. So, what happens when the afib is over?
“Today my heart has been in the 75-81 rate. What caused that? NOTHING!!!!! Just leave it alone! Blood pressure normal. Even after I took a walk all the way around the pond [about ¾ of a mile]. This is the first time it has been this low since I can remember. Yesterday it was in the high 90s -- 98, 99, 97 ... still getting over all of the assaults (fluids, antibiotics, diuretics) that they gave me. I realize some of these things were necessary to keep my kidneys from freezing up, but they have to recognize the effect that it is going to have on my heart and not just deal with my heart in isolation. They overdid it this time with the saline and got fluid in my lungs, so they hit me with a diuretic. It just appears to me to be over-reaction to everything.
“The tradeoff is one of: can I survive another chemo round?, or am I better off not risking it while trying to get a little bit more of the leukemia? I am not totally sure that the leukemia will not come back at some point regardless of what they do. I do not know that anyone knows the answer to that question. If I am going to go thru a third round it would seem to me that Dr. O ought to give me a chance to really get myself strong enough and not kick me while I am down. I was certainly not in any good state of recovery this last go round and that might have had a lot to do with this latest set of problems.
“The rounds doctor after I got out of the unit had a glib way about him. When I was complaining about having a headache, diarrhea for over a week, and generally feeling crappy with an off and on fever, his response was: "Well, you did not die ..." I really never thought that was an option. But apparently survival was a major accomplishment to him.
“I guess my biggest concern about a third round is my heart. I need more time to just let my heart recover and get back to normal.
“Anyway, that's the way I feel. Its not a morale problem -- its a medical tradeoff and I understand it far better than any of the doctors. They need to spend some time in the unit.
“Love – dad”
I include this not as a statement of any other fact except that it is a reflection of my attitude. It is certainly not a medical recommendation. It is interesting to read since, at this writing, I really do not recall feeling this way at all, and if I reported it as I remembered it, it just would not be accurate. I cannot argue with what I wrote at the time. In retrospect I had the best medical care that this world has to offer, mainly because I was being treated by people who really cared about my wellbeing. I did not and still do not feel like I was a number or “just another patient.” But reading between the lines, this whole ordeal was really wearing on me.
There will be times when you do not agree with all that the doctors do, but I could not argue with their intent, nor could I complain about them doing me harm. No doubt they kept me from falling off the edge, with the help of the Lord, of course.
The encouragement given by both of my kids was a critical part of my therapy. The following email from Jonathan is an example that illustrates the research that he did to help me understand my situation a bit better. It is enlightening of, not only his feelings, but many of the technical issues that we were facing.
“This issue about your heart has been frustrating. Chemo is known to adversely affect your organ function, but if you maintain the right amount of fluids and get some recovery time in there, you eventually bounce back and your organs stabilize. You landed in the ICU because you had "septic shock" which I guess they told you. That doesn't have so much to do with the chemo itself but the infection that was caused by the low white blood count.
“When you go
"septic" the infection has gotten so bad and your body is having
trouble fighting so your heart rate gets screwy and your blood pressure
drops. It’s a scary thing that they have to respond very quickly by pumping
you full of fluids and the toughest antibiotics they've got. They likely
went overboard with the fluids. Your body went through a lot, and it’s
naturally going to take some time to recover, but what's amazing is that you
are recovering. I was actually relieved that you were in the ICU because
they could closely monitor you there, but I know it was a crappy
experience that you'd like to avoid. But now your heart rate seems good
(80 per minute is perfect) and you are getting your strength back.
“You have the best prognostic indicators - (1) the t821 translocation and (2) cytogenetic remission, and (3) your overall health. There are some studies that show a 75% remission rate after five years among people who do 3 rounds of consolidation (5 years is just an arbitrary point of time that a lot of studies use). Those with good prognostic indicators like yours have an even better chance of being in the 75%. The frustration is that there is debate over whether more consolidation is necessarily better. Three rounds has become the convention, but there isn't much research comparing 2 rounds to 3 or comparing the doses between rounds and all the various combinations you can imagine. It may very well be that 2 is as good as 3. Or in a few years researchers might figure out that 3 is better than 2. We just don't know and I'm guessing that is part of the message that Dr. O is going to give you. There is clear evidence that 2 is better than none. If you have no consolidation then the cancer will likely return in a matter of months. And there is no such thing as getting "a little leukemia" – I think that is like being a little pregnant. So that makes it hard to weigh more chemo versus damage to your body and taking a risk of landing another infection. The good news is that you've managed to overcome each infection. I think you should be prepared with your list of questions tomorrow and discuss the pros and cons.
“I'm so proud of you and brag on how well you are doing all the time. You've really defeated the odds already so now I think you just want to make sure you wrap this up in the right way - feeling good about whatever decision is made.
“I'll give you a call later today.
My next appointment with Dr. O was the following Monday. I was not in the best of spirits after having been through three rather tough recoveries that got interrupted by infections. I really wanted another week or so before getting hit with the third consolidation round. On the other hand, I did not want Dr. O to think that I was not up to it, so it was kind of a tight-rope dance.
When we got there I told him that I thought I had a logical explanation for my stay in the unit: “It was just some afibs; I do not know what they were getting so excited about. I have had afibs for years.”
“Afibs? You never told me you had afibs. Why didn’t you tell me you had afibs?” he asked as he started thumbing through my thick medical file.
Whoa. I never anticipated setting him off like that.
“It just did not seem to be important … I only had one maybe every other month or so.”
“Well, you should have told me – we might have been able to deal with it more effectively.”
I did not say it but was thinking: “… or maybe you would not have treated someone with a weak heart? That would not have been good.” I bit my tongue … we will never know, and I am sure he did not want to address such a hypothetical at this point. So, I changed the subject …
“I have been having terrible floaters – its like a storm,” perhaps I was trying to divert attention, but it was true. Floaters are spots in front of your eyes that kind of move around as you move your eyes. I understand they are natural and normal and usually take care of themselves. I had had them off and on since my early 30s (just like the afibs, although there is absolutely no relationship between them). Most of the time I just ignore them and they go away. However, I never had them quite like this. I would mistake them for ants or birds. It was like a whole flock as opposed to the one or two that I had previously.
Dr. O jumped up and literally ran down the hall trying to line up an ophthalmologist. After a bit of confusion and getting us to come down to the nurse’s station, they got us in with one for that afternoon. (Remember, we were in Birmingham and getting something right then would spare us an extra trip.)
Back in the office he also lined me up to see a cardiologist. Again, the concern that this man had for my health amazed me – he left no stone unturned.
“Here is the deal – you could have a major eye problem or it might not be anything. And, you might have a serious heart problem, or it might not be anything. But before we go into another round of chemo, you have to get a clean bill of health from both of them. I am going to set you up for your next treatment in a couple weeks, but I want you to see these specialists first.”
“Fair enough.” I was just glad to get a two week reprieve where I might actually feel half way normal before getting hit with that next treatment. I was actually getting to taste my food again.
“Do you have any other questions?”
“I think I know what the other medical risks are of doing a third round now, what is the leukemia risk of doing only two rounds?”
“I will be up front with you … the research comparing two to three consolidation rounds is just not definitive. But I do know this: I would be able to sleep a whole lot better at night if I knew you had completed a third round.”
“I guess the other question is -- what is the risk I will not survive if you do the third round?”
“Let’s get the results from the ophthalmologist and the cardiac specialists and I will be in a better position to answer that question. You have had a rocky road, and ultimately the decision will be yours.”
“Is there a third round that might not be as severe that would up my chances of survival through it and at the same time deal with residual leukemia?”
“I will do my best … obviously it does us no good to get all of the blast cells if it kills you. We are trying to meet that middle ground.
“What is the risk of allowing me a month (or a few weeks) to fully recover before going for the third? Is there a chance that this caused some of the problems in round two?”
“This too is a tradeoff … but since there is no definitively proven difference between two and three, it would probably not hurt to delay things a week or so. It is not like the induction rounds and the first two consolidation rounds where too much delay might give the leukemia cells a chance to rebound. But we do not want to wait too long.”
“Well, we have to wait for the eye and heart verdicts anyway, so that is going to take a couple weeks. At that point we will be in a much better position to make a decision.”
“That’s fine, but I will go ahead and schedule you in for right after you see me and we settle everything in a couple weeks on December 9th.”
“Great, and thank you for all that you have done … I feel like you have had much more of a concern for my life than I have at times.”
We ran over to the ophthalmologist that very afternoon. He was quite thorough and seemed quite somber. The news was not good: “you could have a retina problem …I see some abnormalities. These might just be caused by the chemo and will probably clear up when your neutrophils increase. I am a specialist in the front part of the eye. I know this sounds strange, but I think you need to see a retina specialist.”
Perhaps bothersome, but I sure did not want to go blind. So we lined up the specialist for a week from Wednesday – that would be the first Wednesday in December and a week before my third round was to start, so that seemed like it would work quite well.
It had been a long and productive Monday, and I was running out of gas. Ah, perhaps a bad figure of speech. Let’s say rather I was winding down and my numbers from the lab that morning indicated the reason for it. We came back for platelets and blood transfusions on Wednesday. It went late Wednesday – the Wednesday before Thanksgiving. We had lots to be thankful for, but at that moment the nurses who were staying late take care of my needs were at the top of the thankfulness list. The nurse assigned to me struck up a conversation with Carolyn, and then insisted on giving us both a hug before we left. She even took extra time to change the dressing on my PICC. The only thought that came to my mind was: “you sure would not get that type of care even in the Mayo clinic.” (Just my thought, of course – I have never been in the Mayo Clinic, so I cannot say for sure. Perhaps someone who has been there would like to set me straight.)
There is usually no problem in working on the computer while getting a transfusion, as long as I could stay awake. The preps for transfusions included a couple Tylenol and some Benadryl. It was the Benadryl that would get me. I can only recall once when I made it on through and that was when Carolyn got me a coffee from the in-house Starbucks.
Lesley and Chris were supposed to join us sometime on Wednesday for the Thanksgiving weekend, but it was not to be. Chris was having some severe pneumonia or bronchitis attacks and traveling at this point or even the idea of bringing that close to me was just not under consideration. As it was, it worked out for the best since she got to visit when Jonathan came down the following week. Carolyn and I had a quiet Thanksgiving with her folks. We violated the “no visitor” rule a bit, but we were very careful about things. Technically my blood numbers were not that bad at this point, but I was still somewhat neutropenic.
The doctor had told me to get out and walk, try to strengthen up, but do not over-do it. I tried to walk a little bit more each day but the weather did not behave itself too well and the rain kept me in on a few of these days. I would walk around inside the house to try to keep from getting totally out of shape, although that got a bit boring.
I started reading a book that my good friend Dr. Russ Fine at UAB gave me when he heard I had leukemia. It is entitled “The Black Swan” (by Nassim Taleb). The subtitle is “the impact of the highly improbable.” Most of us base our expectations on the highly probable things that dominate our lives and for the most part, these establish our perceptions of reality. However, these are not the things that typically determine our destinies (these are the expected …the white swans). For better or for worse, it is the very few unexpected cataclysmic events that shape our fate far more than the routine and mundane things that characterize 99% of most of our lives.
How many times have you looked back a year ago and realized that you never had a clue that you would be where you are today? This could be good, as in the case of an unanticipated job offer that changed the course of your career or perhaps even moved you across the country. Or, it could be bad, as in the outbreak of war or the recent near collapse of our economic system. Some of these things are once in a lifetime experiences that we are almost certain will not occur again in our lifetimes, and for this reason they are not subject to being analyzed by any statistical model, whether formal, or as with most of us, just intuitive.
Getting leukemia is a black swan … at least for the person who contracts it. Surviving it might also be a black swan. Both are major, once-in-a-lifetime, life-changing events.
The Monday after Thanksgiving was a normal lab day, so we went to Birmingham and went through the procedure. Still having my PICC made giving blood painless. Fortunately my numbers were good enough to get by all the way until I was to see Dr. O a week from Wednesday. I was still weak as I found out when I tried to climb a few of the steps in the clinic escalator and got a bit spacey when I hit the fourth step up. So, I decided to just ride it up the rest of the way with my hands on both of the rails.
Dr. O’s office is in Kirklin Clinic right off of where they do the blood tests and infusions. So, once in a while when we were in there getting the lab results checked out we would run into him. This was one of them, and we saw him briefly out in the waiting room and we shared some good words. But he was not feeling real good about me packing this PICC around with me for a couple more weeks. He never was too positive about the PICC. I could understand his not wanting me to take a chance on an infection, but I managed to convince him that I would get it pulled at the first sign of a fever.
That following Wednesday was the eye appointment. I found the retina specialist to be much more relaxed and easy … he even responded to a couple of my attempts at humor (which I found gratifyingly strange). He would put this light in my eye and then speak some big words to his nurse who would write things down that made no sense at all to me. It sounded to me like I was about to go blind.
But I wasn’t. Just normal results mostly.
“Well you do have some abnormalities but nothing that I would not expect of someone who has gone through what you have. You understand, we are balancing potential damage to your eyes against the longer term benefits of the chemo therapy. It won’t do you much good to have perfect eyesight if you die of leukemia. So, I am going to give you a green light as far as your moving ahead with the third round of consolidation.” Anyway, that was the gist of it – he actually threw in a few jokes of his own and had me laughing out loud. Of course the good news did not hurt either. We lined up another appointment for after I recovered from the chemo and things stabilized.
Just a note on my eyesight. It has always been quite good. I never had to wear glasses until I hit the normal mid-life reshaping of the eyeball that requires most far sighted people to have to wear “reading glasses.” I was no exception. However, I found early on in the chemo process that I needed much stronger reading glasses that I had before. I usually just wore the very weak 1.25 or 1.50 levels, but I had purchased a stronger 2.25 pair for those times when my eyes were tired and I needed a little more help. Once I got to the hospital and tried to work on my computer I noticed that the 1.25 just would not do it any longer, so I kept the stronger pair handy. I do not know if this is anything typical of chemo. When I mentioned this to the nurse technician at the ophthalmologist’s office she said she was surprised that I could do anything with the 1.25s – at my age most people need the stronger glasses. So, it is possible that the chemo had little to do with it.
Lesley and Jonathan joined us on Wednesday and stayed until Sunday. It was kind of a Thanksgiving after Thanksgiving, and it was great to have them with us before going back into the hospital again.
There was just one more thing standing between me and my third consolidation round and that was the check off by the cardiologist on that following Tuesday. I had kept blood pressure and pulse measurements since being released from the hospital. I guess I could have kept up a log of them during the hospital stay, but they were part of the record. They were all over the place because of the other medications and procedures, and for that reason I did not believe that they were too useful. On the other hand, you could see a clear pattern of improvement especially in the pulse rates after I was released from the hospital.
I explained to her that I believed that the problem that put me in the unit was mainly due to afibs and not to anything typical of my normal heart beat. I told her about having a blood pressure issue some decades ago that I overcame by losing weight. Also, that typically the afibs were very infrequent, but for some reason the chemo or antibiotics (or something else) had made them more frequent. Very frequent or persistent afibs can be serious, but in this case I felt like we had nailed down their cause, and I had only had a couple since getting out of the hospital.
Of course, she looked at other tests and all of the records in addition to the data that I gave her. Her verdict was that there was no reason to stand in the way of the final round, but that we would get a monitor on me after my recovery from the chemo in order to assure that there were no lasting issues.
So things looked good for moving ahead.
Chapter 13. Third Consolidation Round
So when this corruptible has put on incorruption, and this mortal has put on immortality, then shall be brought to pass the saying that is written: "Death is swallowed up in victory. O Death, where is your sting? O Hades, where is your victory?"
– 1 Cor 15:54-55
As we have seen from the previous consolidation rounds, the chemo itself takes about a week. That is no problem. The problem comes a good week later when the chemo takes effect and your white blood cells go down to nearly zero. Any infections at that point put you right back in the hospital. This has happened to me on my last induction round and on both of the first two consolidation treatments, but I felt like perhaps this one would be without incident. If so, things might be to a point of my gaining strength around the end of the year sometime.
I went in for a final check with Dr. O the Wednesday right after the check up with the cardiologist.
“Well, the ophthalmologist and the cardiologist both gave you the green light. I guess now the decision is yours … are you sure you want to go through with it?”
“Absolutely. I realize that three or four weeks ago I was about ready to … ah, let’s not get into that … right now I would not feel right if I did not finish this up and accept your recommendations.”
“Mrs. Brown, do you concur with that?”
“Yes, we need to see it through and get this whole thing behind us.”
“OK. That is what I thought you would say so I set you up to get checked in and start your next round right away.”
With that we went directly to the floor – the 9th floor to be exact. The hospital is joined to the clinic with street overpasses, so it is just like we were in the same building, although there is quite a bit of walking involved. As we got to the floor I saw a couple of my old friends, but many new faces as well. I will not say it was like going home, but it was definitely a stark contrast with my first admission. I felt like an experienced chemo consumer, and with literally every strand of hair gone from my entire body, no doubt I looked the part.
One of the nurses on the floor that night was amazed to see me and I could tell she almost broke out crying as she gave me a hug. She had taken care of me for a few days around about the time I was in the unit, so perhaps she was not expecting to see me again, especially looking this well. I had always thought that medical people had to keep their emotions so in check that after while they almost got immune to suffering and stayed unattached from their patients. Perhaps this was true in some places, but I did not find it at all applicable to the medical people at UAB Hospital, male and female alike. When you know people care like this it gives you an added incentive to take care of yourself and recover. Of course, the same thing can be said about your family and your brothers and sisters in Christ, who I was getting cards and e-mails from on a daily basis.
There was no delay. As soon as I had eaten supper they got the preps going into my PICC and the chemo was to follow that very night. Supposedly Dr. O had toned it down a bit to get me through it, but later he told me that the adjustment was minor. All for the best.
Dr. O happened to be the rounds doctor that week, which gave me a really good feeling of confidence. Of course, there was really not a whole lot that I needed a doctor for at this point. As we have said before, there is no problem during the chemo treatment itself … for me the problems usually came at least a week after the chemo completed. Dr. O’s entourage could not fit into my very tiny room (which, by the way, I loved since I could reach just about everything without getting unhooked from the IV machine). When he came in on Thursday morning he only spent a couple minutes. But that was OK since I heard him lecturing the entourage on my case through my closed door. I thought he would come in and jab me a little, but he had probably seen enough of me not to want to waste a whole lot of time on me. There were others in much greater need of his help.
He opened the door and said: "we were just talking about you."
I was thinking of something smart mouth to say about hearing him through the door, but felt like that might kill my chances in the future, to “listen in,” so I just kept my mouth shut. It was kind of interesting listening in, although I must admit, between the noise in the hall and the medical jargon, I did not get that much out of it. But it sounded positive and that was all that mattered.
So he asked me how I felt and I say "better than I did yesterday," and yesterday I told him I felt great. But yesterday I did not have the chemo prep. Thursday and Friday morning were “rest days” to keep the chemo from doing too much damage.
The rest of my stay went pretty much without incident. They trusted me to keep my fluids going and were able to set me free from the IV for hours at a time so I could walk and get my showers.
They had convinced me that I would not be needing my PICC any longer, and that removing it now (right before I left) would avert another infection and perhaps enable me to get through this recovery without incident. Dr. O had been bugging me for weeks to get rid of it, but I held out. However, at this point the only use for it would be for blood, platelets and antibiotics if I came back, and I was resolved that I was going to make it through this last recovery without incident.
The nurse practitioner (I will call her name Heather) and I had been having a friendly argument over my PICC. She said she was going to pull my PICC before I left. I started with my normal arguments. Then when I finally relented I kept asking her to give me a local, and she kept denying that I would need it. Finally I told her whatever was best, just do it.
The next morning she came in with Dr. O as part of the entourage. I told Dr. O that I had some bad news for him.
“What’s the problem?”
“Well, I know for weeks you have been just itching to pull my PICC.”
“Yes, and …”
“I promised Heather she could do it. Sorry.”
It was the last thing we did before I left the hospital on Monday … the second Monday in December. I gave Heather more aggravation about giving me a local … just kidding with her. I do not watch procedures such as this, so just kind of turned my head when she did it. Amazingly I cannot remember feeling it at all, which I do not see how that is possible, but I am not complaining. She had to put pressure on the artery to stop the bleeding – that was far more painful than the removal, but I was not about to complain. But I could not kidding her: “perhaps you could give me a local for the pressure?”
Chapter 14. Home Again?
And by reason of the exceeding greatness of the revelations, that I should not be exalted overmuch, there was given to me a thorn in the flesh, a messenger of Satan to buffet me, that I should not be exalted overmuch.
– 2 Corinthians 12:7
I was thinking: “All I have to do is survive the next three or four weeks and things will be looking quite good.” I realized that there were no guarantees, but according to Dr. O, the leukemia was in remission, and that was certainly something to give the Lord thanks for. The next couple weeks could be rough -- but that it the easy part. Managing to keep from getting an infection/fever ... that would be the trick. At this point I did not really care about anything else.
It was Monday, December 14th when I was released from the hospital, having finished my chemo that morning and then having my PICC removed. I was feeling only the beginning of the side effects – that being some metallic taste in my mouth. Since I had not gone neutropenic yet, we decided to stop at the Cracker Barrel to get something to eat. It was mid-afternoon and the place was almost empty, so that made it fairly safe. We got a table as far away from the smoking section as possible. As is our custom, we bowed our heads to pray before eating. I could not get past the first thank you without breaking out in tears. It was just the thought of going home, and recognizing how God had made this ordeal into a great gift. I felt like this might be the last time I would have to spend time in the hospital … it was possible.
The food was great and I gorged myself with all of my favorites, including some of their great coffee. As I finished eating and drinking my coffee, however, I felt something on the back of my tongue. I had been having a strange sore throat for some time – off and on. Strange, in the sense that it did not develop into a cold, nor did it feel like an allergy or anything like I had experienced before. I did not give it much thought since it seemed to come and go. At this point I was used to weird things going on due to the low blood numbers, and until those numbers came up closer to normal, I would just write it off to the chemo effects.
As for my frame of mind at this particular juncture, the following is an e-mail that I sent to one of the elders of our church:
“I have learned a lot from this experience – just coming home made me realize how fortunate I was to have everyone praying for me, to have a loving family and a comfortable home. We do not realize the value of the things we have until we lose them, even for a little while. Actually, I feel quite lucky to have had such positive people working with me in the hospital. Sometimes it just seems unreasonable to me how much effort they have put into keeping me alive. Of course, I am grateful to God that He has seen fit to prolong my life. I am enjoying life one day at a time, and just thankful for every day that He has given me.
“So I am doing fine right now, and looking forward to perhaps being able to stay at home for a good long while and enjoy the holidays. I still need to go in to Birmingham on Mondays and Thursdays for blood tests and possible transfusions, but that is a minor inconvenience. The Lord has gotten me through the major part of this – I am confident that he will get me through the rest. I am really looking forward to getting back to being at Prattmont – that is going to be a very emotional experience. Your prayers and those of your family have helped tremendously and I appreciate them greatly. I feel so very blessed.
“May God bless you and your family – dave”
Of course, once I got home since I was neutropenic I did not leave the house, and neither could I have any visitors. I got Jonathan to get his mother a Christmas gift for me, since I knew he was going to join us for Christmas. We got her a Nintendo Wii after a fair amount of back and forth e-mailing. He had it shipped to our house.
My temperatures were fine as the week progressed, although by Saturday I was starting to feel really weak. Just getting up was getting me quite tired. I had an appointment for labs on Monday and just wanted to make it on through the weekend.
On Saturday morning about 10 AM Carolyn let me know that she was going to go out to wash off her car, which had gotten filthy in the persistent rain and a few short bursts of snow. My first blood pressure reading that morning was 113/66 with a pulse of 87. I noticed that morning that I was having an afib (Atrial Fibrillation). They feel sort of like your heart is beating in your throat, and there is a rapid heartbeat. These seemed to be lasting much longer than the typical ten minutes or so. I did not want to over-react, so every half hour or so I would go over to the table where my blood pressure machine was set up and check my blood pressure and pulse. My concern was that it seemed to be resulting in a low blood pressure, and if that persisted I would need to get back to the hospital. My second reading was 86/71 with a heartbeat rate of 148, which is about double what it should be.
Shortly after Carolyn went out to wash down the car I got out of my chair and went over to the table (no more than 10 feet away) to take my blood pressure again. It turned out to be 75 over 53 … by far the lowest I had ever measured it. The pulse was down to 110, but there was no reason (other than the afibs) for it to be that high. I decided that I would just try to lay still on my recliner to try to get the afibs over and then take it from there. I attempted to take the three or four steps back to my chair but never made it. About half way there all went black and I heard a loud crash. I came to and was lying on the floor. I realized that the noise I heard was my head crashing on the hardwood floor. Not good.
Now a quick piece of advice. If you ever have a 75/56 blood pressure reading, do not get up. Perhaps crawl, but do not stand up. When I passed out there was absolutely no warning – I heard a big bang and woke up on the floor. Later I discovered bruises on my elbow and a big one (about 3 inches in diameter) on my hip. I never could find any bumps on my head, which was kind of mysterious. I shudder to think what would have resulted had I fallen in the direction of the fireplace with its raised bricks just a few feet away.
I got myself up and flopped into my recliner. While I was a bit sweaty, I did not feel that bad and did not notice that the afib was still present. Needless to say, when Carolyn came in and I told her about it she was beside herself. But I managed to convince her to hold off until Monday since we already had an appointment for then.
That night I woke up an hour or so after going to sleep to go to the bathroom. This was a normal thing for me – I was in the habit of getting up sometimes several times. As I got into the bathroom suddenly my legs went out from under me. I had not turned the light on and I was in the dark. I believed that I had just for a second passed out again. I grabbed hold of the sink for fear that I would crack my head on the floor if I fell. Then I felt my legs come back and got them under me. I did not take a chance on it but managed to make my way back to the bed. Fortunately, that was the only time that happened.
I took my blood pressure the next morning and things were back to normal with both the blood pressure and the pulse, so I decided to just hold on until my next regular appointment, which was the next day – Monday. Of course, this is NOT recommended procedure and the medical people gave me some real flack about it once I got there on Monday.
Dr. O: “You what??? Passed out? When?
“Saturday. I was only out for a second. I did not have a fever,” trying to bargain as in you never told me what to do if I passed out, only if I had a fever. He did not buy it …
“What is wrong with you? You should have gotten yourself in here right away. Have you been having problems with afibs?”
“Yes, I am pretty sure that that is what caused my low blood pressure. It was about 75 over 56. But they went away and the blood pressure came back up to normal.”
He shook his head a little and rolled his eyes. He had the results of the blood tests done earlier that day and they were not at all good.
“How are you feeling now?”
“A bit spacey when I get up.”
“We really need to check you into the hospital and do some tests, and get you some platelets and blood.”
I knew this was inevitable, and I was resigned to it. It would be a bit uncomfortable. Without having my PICC, they would put a temporary IV in my arm that would hold up for the duration – maybe three or four days at this point if they had to check me in.
Dr. O gave some orders to his nurse to get things all set up at this point, and it got somewhat confused as to whether I would get the platelets at the clinic or in the hospital. Dr. O understood that I would get checked in to the floor first. As the day progressed and he had to deal with other patients, things took on a life of their own. It finally turned out that the nurses felt it would be best for me to get the platelets at the clinic and then get checked in to the floor, have some tests and get lined up for blood. They had it under control.
There are a couple different infusion rooms in the clinic and the one I went to was a new one to me. But all went well and they got me hooked up and rolling with the platelets in relatively short order. The chair that put me in was right across from an open door that looked down a hallway. I had seen Dr. O going down the hall and felt like I could surprise him when he came back. Sure enough, when he came back I managed to get his attention and gave him a thumbs up when he went past the door. He did a double-take, shook his head and laughed without breaking stride.
Once the platelets were completed they got a wheelchair and took me on up to the floor where they had a room waiting for me. They had already set up a mini-port on my arm – an IV that is set up to last four days, like the one I had with my first round of chemo back at the beginning at Montgomery. They would also administer some antibiotics that they said were needed since being light-headed is sometimes a prelude to an infection, and they wanted to catch it early.
Jonathan was joining us for Christmas and he got in the Monday that I was admitted into the hospital. It had been snowing for what seemed weeks in Washington DC, but he managed to get out in one of the few breaks in the snow.
It was the Tuesday before Christmas, which this year would be on Friday, and one of the med folks’ objectives was to get me home for Christmas. I do not recall the totals, but it seemed like they gave me three units of blood and another unit of platelets on Tuesday, and then another couple units of blood on Wednesday. My blood numbers, blood pressure and pulse all looked acceptable after that, but the rounds doctor was still concerned.
“We are going to let you go home, but under one condition – you have to get yourself right back here if you pass out or if you temperature goes up.”
I readily agreed. As much as I loved everyone there, I really did not want to spend Christmas in the hospital. And at that point I was feeling relatively good. The antibiotics they gave me could be finished up orally, which made that part easy.
Christmas was very gratifying, even with the limited number of loved ones that we allowed. It was just Jonathan and his wife Regina and Carolyn’s mother and father who live just a block or so from us. After all of the procedures and medications, the last thing we could take a chance on was that I would catch a cold or the flu. They were very careful.
Chapter 15. What is Normal?
Jesus said to him, "If you can believe, all things are possible to him who believes."
– Mark 9:23
The weekend after Christmas was about the time that I had calculated for my blood numbers to be bottoming out. The transfusions helped me get through it. I was feeling fairly good but could not do too much outside. It was not the best of weather so I did not have a great desire to go outside, but I did need to get a little exercise. I would get exhausted quite easily, however, and disciplined myself to keep from over-doing it. Passing out would be a quick ticket back to the hospital.
Things all seemed to be going well as the Christmas break progressed. I was getting a bit annoyed with something down in my throat. It had started way back when (at that point I could not really remember). Originally I thought it was the beginning of a cold, but it never developed like that. Usually after a couple days of a sore throat the other cold symptoms will come around. So, I figured it was probably an allergy or something that really was not serious. I got to thinking at this point that it might be a tumor or something like that, so I resolved to tell Doctor O about it in my next visit, which was still a couple weeks off (Wednesday, January 6th).
My next lab was on Thursday, which happened to be New Years eve. I was hoping that my numbers would be naturally up so that I would not need any transfusions. As it turned out there was some improvement and they figured that I would make it over the weekend to the following Monday with no problems. I still had a couple more tough weeks to go through, but it seemed like the end of a very long and bad nightmare.
Things seemed to be progressing – I was doing a little more outside without getting too tired. The labs on Monday showed that my numbers were coming up, and once again I got away without any transfusions.
My regular visit with Dr. O was the following Wednesday. By then I was feeling a bit exhausted. So, even though my blood numbers were coming up, I still needed to come back on Thursday for platelets. It made for a long day, but I was thinking that this might actually be the last time I would get a transfusion. We had to be there early – at 8:30 AM … that might not sound early but you have to realize that it took us a couple hours to get there.
It was a good thing that we started early, however, because it started to snow. You have to realize that snow is rare in the south (maybe once or twice a year and typically no accumulation). So the nurses were constantly looking at the window and speculating on whether they were going to shut down their kids’ schools. We had to switch off nurses at noon, but no matter, it all got done, and it was fun watching the tensions come and go. They shut down the University of Alabama (at Tuscaloosa) so I did not have to worry about my typical e-mail traffic.
The following day was 25 days after I finished the last chemo round. I got into a standard routine of computer work and a few minutes of moderate exercise. That was about all I could take. I was still getting tired quickly when walking, but each day seemed like I was getting a bit stronger. I was expecting to be able to jump around at this point, but that was not in the cards. It was going to take a lot longer than that to fully recover. Or maybe normal was way too much to hope for.
It seemed like the cold and the rain plus my just being tired had kept me in for a couple months. If I could get out, my exercise consisted of walking about a half mile. There were lots of things to do outside, but anything much more strenuous than walking was just not something I would consider at this point.
Meds at this point (if all went right) would just consist of labs in Birmingham on Wednesdays, with a visit to Dr. O every other Wednesday for a while. It was hard to anticipate how long it would take to fully recover, or even if I ever would get back to normal. I would think that might be more than I could expect. I really did not know what normal was for a 66 year old man. Was I getting tired because of the remaining effects of the chemo, or was it just old age? I had never really thought much about getting old before – just pushed myself until I just about collapsed and then came in and rested. I was not going to take a chance on anything like that now – I had heard about people who had gotten through chemo successfully only to die of a heart attack. I could see why, since even light exercise would increase my heart rate dramatically.
The next Wednesday labs worked out fine, and I was glad that I did not need any blood or platelets … perhaps that would be the end of that particular part of the ordeal. We made an appointment for the next week for a bone marrow biopsy conditioned on my blood numbers being up a bit. The thing in my throat that had been off and on was now “on” big time. It was not just a sore throat anymore. I would not notice it for a while and then I would turn my head a certain way and get a dull pain in my neck. I was convinced that it was a tumor or something, so I resolved to let Dr. O know about it on my next visit, which would have been just before the biopsy. I knew Dr. O and the other doctors as well checked under my arms and around my ankles, and for that matter – all over for what I presumed were tumors or perhaps some other growths.
Bad news when I got to see Dr. O. It wasn’t the pain in my neck, however, just that my blood numbers were not good enough for the bone marrow biopsy, so that had to be postponed. As for the thing in my neck, he poked a bit and felt a little and then wrapped his hands around my neck like he was going to strangle me. I had a feeling he had been waiting to do that for a long time. The problem was that he could not see far enough down the back of my throat to be able to determine anything. But he wanted to be safe and so decided to send me to a nose and throat specialist.
We could not get an appointment until the following Monday, so it was a trying weekend. When we finally got there the doctor asked a lot of questions. I felt that she was quite thorough and that I was in good hands. I was a bit leery about some of the instruments, but they assure me that they would anesthetize my nose before putting the (what can I call it?) visualization device up it (or would it be down it?). They did and then fed the device that was like a very flexible piece of wire up and down my nose until it was in my throat. She said that this was found to be a better and more comfortable than trying to go directly down the throat. It really was not that bad. She was able to see all around, but really could not find anything of substance.
Then she asked some more questions. The one I remember was: “Do you burp more than twice a day in a way that you can taste what you have eaten?” My response was: “Doesn’t everyone?” You guessed it, the answer was supposed to be no.
Her diagnosis was that I had a severe case of acid reflux and it had started eating away near the bottom of my throat. I will not say the name of the purple pill, but she had me take them an hour before mealtimes twice a day. I was also to back off from fruit juices and anything that I knew to be acidic. Once my blood numbers came up, however, this side effect went away. It took about a month to clear up, but that was a couple weeks before the follow up visit. Since she said to cancel the follow-up if I did not need it, that is what I did.
There were a couple of follow-ups that I did not cancel. One was with the ophthalmologist – my eyes checked out fine. The other was with the cardiologist. That one is in a few weeks and I do not plan on canceling that one. At this point I am taking good care of my heart and it is taking good care of me. I believe that the chemo weakened it, but I am also confident that it will get its strength back. At this writing (June 26, 2010) all is well. The bone marrow biopsy that was done the last Wednesday of January could not have been better, and we are taking a “wait and see” approach. One week after that my numbers were good enough to get two flu shots – one for normal flu and one for the H1N1 (swine flu).
This also meant that the “No Visitors Please” sign could finally come down and that I could start to get out in public. The first group I met with were my brothers and sisters in Christ the following Sunday morning – the first Sunday in February 2010. These were people who had been praying for me in earnest for the past eight months, many of them on a daily basis. Getting to see them again was one of the high points of my life, and something that in many weaker moments I never thought that I would see. I knew that if I tried to speak or read something that I would never make it through it. Tears of joy would prevent me from speaking … it has never happened to me before in a public speaking situation, but I have experienced it in private conversations, and I know how impossible it is to continue in situations like that. So I tossed it at our preacher, Bryan Gibson, to handle. This is what he read:
“I have asked Bryan to read this because it would be difficult for me to get through it myself.
[At this point he interjected: “Dave never considered whether I would be able to get through this,” which drew a great laugh from the congregation … some welcomed comic relief before continuing.]
“I will thank each of you individually, but time prohibits my calling names at this time ... with one exception. As many of you have expressed to me, this has been a very difficult time not just for me, but for Carolyn, and I want all of you to know how much I appreciate her efforts to take care of me, and do so many of the things that I just could not do.
“I know that all of you have been concerned about me, and I want to thank you for your cards, letters and e-mails. But most of all, I thank you for all of your prayers. I thank God that I have brothers and sisters in Christ who care so much. There is no doubt that God has blessed me richly.
“I want to particularly thank the young people for their cards, drawings and encouraging writings. As I received and opened these expressions of love, I was touched by the sincerity of their concern for me. They prayed for me to return, and now I am here. Let us all give thanks to God for his wonderful blessings.
“With the greatest of love for all of you – dave brown”
I do not expect to ever be the 66 year old who looks like and works out like someone in their mid 40s. I do expect to continue to strengthen to the point where I will be on par with the average 60 year old who is in good health. That is my goal right now, and I see no reason that I cannot attain it. I am a survivor thanks to the grace of God.
Then Job answered the LORD and said: "I know that You can do everything, And that no purpose of Yours can be withheld from You. You asked, 'Who is this who hides counsel without knowledge?' Therefore I have uttered what I did not understand, things too wonderful for me, which I did not know. Listen, please, and let me speak; You said, 'I will question you, and you shall answer Me.' I have heard of You by the hearing of the ear, But now my eye sees You. Therefore I abhor myself, And repent in dust and ashes."
– Job 42:1-7
Postlude. A Time to be Thankful
As of this writing on September 6, 2010, I am still in remission.
Therefore I will give thanks to You, O Lord , among the Gentiles, And sing praises to Your name. He is the tower of salvation to His king, And shows mercy to His anointed, To David and his descendants forevermore.
– 2 Samuel 22:50-51
And the twenty-four elders who sat before God on their thrones fell on their faces and worshiped God, saying: “We give You thanks, O Lord God Almighty, The One who is and who was and who is to come, Because You have taken Your great power and reigned.”
– Revelation 11:16-17
The two references given above are the first and the last mention in the Bible of giving thanks to God. Giving thanks is mentioned about 75 times in the bible, and it is a very important activity in the lives of Christians. Paul even gave thanks for his thorn in the flesh (2 Corinthians 12), so it is not something that is reserved for when our prayers return our wishes. “Thanks God for unanswered prayers.” Paul’s prayers were not answered as he requested, but nevertheless. God heard them and did what was best for Paul. And so his giving of thanks was in recognition that in the grand scheme of things, God’s will for us is best.
I realize that some reading this will have loved ones that they prayed for who nevertheless succumbed to cancer. I also realize that while I am currently in remission, there is no guarantee of its continuance. My chances of recurrence are much greater than those who have been cancer free. I could easily wake up tomorrow morning with a headache and a fever, and my blood tests will show that the leukemia has returned. Life on this earth is fraught with uncertainty due largely to the curse that has been with mankind since their sins in the garden. But the cup is more than half full for the living who are in Christ. For while we can rejoice in every day on this earth that the Lord has given us, we can also rejoice even more in the prospect of eternal life with Him free from this curse where every tear will be dried.
The inspiration for this part of the document came a few days ago when I was finishing my shower and I realized how fortunate that I was that I did not have to be concerned about my Hickman or PICC any longer as I had in the hospital, and that my head was clear of the cobwebs that plagued me through most of my ordeal. I gave thanks then, but I also came to the realization that I would not be giving such thanks had I not gone through the ordeal – I would have just taken the carefree shower for granted. It hit me that I should write this up along with many other things that the ordeal itself has made me realize are blessings of God, and I would have never given thanks for them had I not gone through it.
Solomon proclaimed that all of his physical blessings from God were vanity. But he never mentioned his sicknesses or losses, perhaps because he had so few. He did mention that it is “better to go to the house of mourning than to go to the house of feasting, for that is the end of all men; and the living will take it to heart. Sorrow is better than laughter, for by a sad countenance the heart is made better. The heart of the wise is in the house of mourning, But the heart of fools is in the house of mirth” (Ecclesiastes 7:2-4). This is not vanity. From this we can conclude that if not the infirmity itself, at least the survival of it can be a tremendous blessing from God. We should recognize this after we survive. But it is also an important thing to recognize when we are anticipating going into a long and painful ordeal, and it can provide us a rich blessing even if we do not survive physically.
Below is a list of the things that I do not believe that I would have thought to give thanks to God for had it not been for the ordeal that I went through. I am now thankful for:
· Each and every minute that I have now, and the preciousness of life itself.
· My Lord and Savior Jesus Christ who in the worst of times did my worrying for me.
· My wife, who stood beside me and never complained about having to take care of me when I could do so little for myself.
· My children. Lesley and Jonathan, who rose to the occasion and did everything in their power to provide knowledge and assistance, especially in those times when things did not look at all positive.
· My brothers and sisters in Christ who prayed thousands of prayers for me – I am thankful not only for their prayers, but also for their righteous lives that made their prayers “avail much” (James 5:16).
· My ability to attend and participate in church services without fear of catching an infection.
· The knowledge and skill of the medical staff that God enabled through His power to have the ability to address a problem as complex as AML and MDS. And while God is the source of their capabilities, I credit them with sacrificing a major part of their lives in hard work and study in the universities to first become generally qualified, and then to go on to do the research to become proficient in their various fields of endeavor. These people have sacrificed and worked extremely hard to be in a position to do what they do. But perhaps even more than that, they cared about me personally and treated me (and the other patients) as fellow humans worthy of their skills.
· The care I got from all of the nurses, Patient Care Technicians, and all of the service people – I never once can recall where they made me feel like I was putting them out in my obvious needs and not-so-obvious requests that I made of them. This was totally unexpected on my part.
· The ability that I have to do simple tasks, such as tying my shoes or putting on my clothes, without being concerned about losing my balance or feeling like I was going to pass out.
· The ability to move around unfettered, and yes, to take a shower, without being hooked up to an IV machine.
· The ability I have to once again drive my car … it did not recognize me for a while.
· The ability to take care of my yard – with the rain this year it needed to be mowed almost every week.
· The fact that I have gotten off all of the drugs I was on except the synthroid (for a thyroid problem that I had before being diagnosed for cancer), since my blood pressure and other symptoms are now normal.
· The ability to eat salad and the many other things that I could not eat while I was neutropenic, and for that matter, the ability to once again taste my food.
· The ability to button my shirt – especially the top button – for a long time the weaknesses in my fingernails made this extremely difficult.
I could go on and on, but you get the picture – I see most of life with a different perspective now, and this is a blessing even if my time on this earth is shortened.