Day 251 (formerly posted as day 244)

Not much in the way of new or unexpected news at today’s clinic appointment. My blood counts improved a bit and the doctor said I look good and am doing well. I told him I still have some GI stuff going on, so as I figured, he didn’t adjust my meds at all. He said that prednisone would probably take care of all my symptoms, so if I was terribly uncomfortable, he would start me on that. However, the cramping is not bad enough for me to want to start in on steroids. He also said it is tempting to want to eliminate the one pill of Prograf (an anti-rejection drug) that I’ve been on for some time, but experience tells him it’s best just to wait it out.

WBC – 3.5, up from 3.3 and seemingly good enough even if below normal
Hgb – 11.6, up from 10.9 and still below normal of 13
Plt – 281, up from 272 and at a good level
AST-SGOT – 37, down from 47 (below 42 is normal)
ALT-SGPT – 45, down from 52 ( below 40 is normal)

So all the counts improved a little. If both my liver enzymes (the last 2 listed) were below 40, and my intestinal cramps subsided, I think they would start weaning me off the immune suppressants.

When I was in the waiting room, I struck up a conversation with another BMT patient who said he is about 20 months post transplant and is still on a lot of meds including Cellcept, which is the other (besides Prograf) anti-rejection drug that I am on. His brother was his donor, and he said he had pretty severe intestinal GvHD starting at about 3 months post transplant. I was sorry to hear (for him and me) that he is still on immune suppressants after 20 months. That doesn’t mean I will be, but it reminds me I could be.

After he left, another BMT survivor whom I know a lot better (he is in our BMT couples group) showed up. He is almost 4 years post transplant and has just gotten some new GvHD attacking his lungs. He says he can’t even walk up a flight of stairs. I didn’t get to talk to him long, but he seemed pretty discouraged.

Both of these conversations were reminders how different everyone’s post transplant experience is, and that GvHD really can persist and flare up for a long time.

My hair is longer than it’s been in at least 30 years, and it’s still quite curly. In fact, that’s why it’s long – I’ve never had curly hair before, and I’m just having some fun seeing what happens if I let it grow out.

Love,
Justin

Day 238

I went to my regular clinic appointment yesterday. My GI and emotional concerns that got me into the clinic last week have subsided and are much like they had been before, although I still feel a bit low and low on energy. My blood counts are very close to what they have been for quite a few weeks, so the doctor is keeping my meds at the same levels also.

WBC – 3.3, up from 3.0
Hgb – 10.9, down from 11.0 and still below normal of 13
Plt – 272, down from 281 and still at a very good level
AST-SGOT – 47, up from 41 with 10 – 42 being normal
ALT-SGPT – 52, up from 47 with 10 – 40 being normal

The last 2, which are the liver enzymes, seem to be hanging around just above normal. This and my GI cramping are both indications of GvHD that seem to keep the doctor from wanting to decrease any of my meds. He says that his experience leads him to believe that it doesn’t pay to rush things.

Despite having slightly lower energy levels, I am trying to get more exercise. The warmer weather has gotten me back to doing some bicycling and tennis, plus I played some volleyball for the first time in a long time. I like getting the exercise and I still get winded and tired quite quickly (due to some anemia as well as being quite out of shape).

I forgot to mention that at the clinic last week, my doctor told me that he is leaving to take a position heading up the cancer center at a hospital in Georgia (maybe the Medical College of Georgia). I have mixed feelings about this because he is one of the best doctors of any kind that I have ever come in contact with. I’m sorry to see him go for my sake and the sake of the BMT program here, but I’m sure he deserves the position and can maybe do more good for more people from a position with much greater influence. He will be around until the end of June and said he will be treating me right up to the end, but doesn’t know yet who will take over from there. My plan is to be on the home stretch then anyway, so it won’t affect me as much as his patients who have just had or are about to have their transplant. I am grateful that I will have had him treating me for about a year, including seeing me through the most difficult phases (I assume) of my disease and treatment.

Love,
Your getting-better friend, Justin

Day 231

This is kind of an interim report and a bit more graphic in terms of some bodily functions, so if you don’t care to read such things, I’d suggest just skipping at least the third paragraph.

At the clinic, they always tell me to call if anything changes. Well, in the last week, three things have noticeably changed as follows:
My GI tract has been acting up a bit
I have a lower energy level
I felt like I had some emotional things going unlike anything I can remember

So I called them yesterday (Thursday) and they asked me to come in today. (Here comes the graphic part). It seems they are most concerned about my GI problems and have asked me to measure my stool output for the weekend because part of my report was that my bowel movements had become looser and more frequent in the last few days. Apparently, it can be considered diarrhea when the bowels are moved several times a day, regardless of the consistency. Measuring my output sure sounds like a lot of fun L.

Every time I go in to the clinic, I fill out a check box type questionnaire about whether I’ve had fevers or pains or itchy skin, etc., and one of the items at the bottom asks about emotional changes. I routinely just skip by that without thinking about it much, but remembered it after having a few days of emotional turmoil that included a day or two of significant sadness of unknown origin, and then reacting to something my wife said with a level of anger that was out of all proportion to what she said. I also remembered reading somewhere that emotional swings like that are not uncommon for transplant patients. When I talked about this with my caretakers at the clinic, the first thing they asked me was whether I was taking any steroids, which I am not. Apparently, steroids are known to often cause emotional roller coaster rides, but the other meds I am on do not generally do so. I have to admit to some ambivalent feelings about the meds not being implicated in my mood swings. On the one hand, I am glad my meds are not affecting me that way, but on the other hand, I sort of lost my excuse for blowing up at my wife.

After thinking about it for quite a while, factoring in that those emotional extremes are not something I remember ever feeling before, I’m starting to think of other things that are going on that are likely to play into such a state. To begin with, there is the difficulty of going through an extreme medical procedure like I have, including the chemotherapy, the transplant, and the recovery which is now in its eighth month and whose end is still some undetermined distance in the future. Along with that is realizing and dealing with the reality that the disease or the attempts to treat the disease could result in my death. But in the last few days, I have realized that there are also pictures I have of myself that have needed modification. I believe that we all have pictures about ourselves and the way we think life is supposed to be, and I also believe that those pictures while probably necessary, are usually, if not always, impediments to our spiritual growth because they can keep us in denial about the way things really are. Having to give up those pictures necessarily involves some level of pain because they are crutches that seem to help us deal with life. But they also occasionally need to be discarded or at least modified so that we can break patterns that no longer serve us. For example, I have long had a picture of myself as a healthy person. Now, for nearly a year, and actually for years before my diagnosis, I have been the sick guy. Sick enough that my health is the first thing people almost always ask me about. Or the first thing many people ask my wife about. I really do appreciate the concern and the love behind it, but it is also a constant reminder that I am now the sick guy. I am ready to not be the sick guy anymore. I’m ready to be the guy who recovered from leukemia and a bone marrow transplant. Sure, I’ll probably get tired of that as well, but for now, it appeals because it would be a move in a positive direction as well allowing a different perception of me.

Being the healthy guy or the sick guy must certainly be related to another picture of myself that I have struggled with consciously and subconsciously for a long time. That picture is the one that has me being a rock – the steady, reliable, unflappable guy. It’s a picture that I both like and find to be a burden. I like being seen as steady and reliable, but I also am painfully aware of what that sage, Paul Simon says about how a rock feels no pain and can be an island that never cries. That part fits not so well.

Well, I am rambling and probably boring you. Too bad; you could have stopped at any time ;-). I don’t need anybody to read this and it feels like it was kind of therapeutic to write about. It makes sense to me that everything together could easily add up to an emotional roller coaster, and that blowing up could even be cathartic. And yes, I recognize that I also seem to need reasons or excuses for my emotional extremes. Let’s call them explanations – that’s reasonable.

So much for a brief interim update. Overall, I’m still doing and feeling pretty well, and I still feel quite positive about getting cured and being a healthy guy again. If you’re reading this, I assume it’s because you care and your love and caring means the world to me.

Love,
Justin

Day 225

This is going to sound a lot like my last post because not much has changed. All my blood levels are close to the same and once again, my meds have not changed.

WBC – 3.0 down from 3.1
Hgb – 11.0 up from 10.8
Plt – 281 up from 252 (and I believe the highest I’ve seen it in over 4 years)
AST-SGOT – 41, up from 33 with 10 – 42 being normal
ALT-SGPT – 47, up from 43 with 10 – 40 being normal

The doctor seems pleased with the way things are going and still wants my liver enzymes (AST/ALT) in the normal range before starting to cut back my meds. Plus, while my intestinal cramping is better than it was, there is still some, and he believes it is GvHD. He says that while it is tempting to rush the weaning from meds a bit, his experience tells him it’s better to not. So while I am getting more anxious to start weaning, I am trusting the doctor who has done hundreds or thousands bone marrow transplants, more than my own experience of not yet having made it through one.

Love,
Justin