Day 308 - goodbye to Dr. T

I had another clinic appointment yesterday, my last with Dr. T, the oncologist who took me all the way through my transplant experience to this point. I will miss him.

WBC – 4.1, up from 4.0, normal
Hgb – 12, up from 11.4, higher than it’s been in a while and still below normal of 13
Plt – 238, down from 248 and still at a good level
AST-SGOT – 68, up from 54 (below 42 is normal)
ALT-SGPT – 92, up from 69 (below 40 is normal)

My blood counts were OK, except that my liver enzymes went up some more (wrong direction). They were up enough that the doctor bumped up my Cellcept (immune suppressant) back to where it was last month. He’s not too concerned, however, because his experience leads him to believe that the liver gets stressed to a certain level and stays there for a while, whether the immune suppressant is adjusted or not. It would then stay there until the grafted immune systems just gets “worn down” is the phrase I think he used, at which time it would just give up attacking the liver. He’s recommending just leaving the Cellcept level where it is for another month or two and then try cutting it back again. I asked him if the level of immune suppressant affects how quickly the immune system gets worn down and he said it didn’t.

He seems to think my getting winded is due more to being out of shape from getting no exercise for 8 months or so than to being anemic. I guess I’ll have to make more of an effort to get some aerobic exercise.

The doctor and the PA both think my taste problems (no food tastes good) are not due to meds. It’s just one of the unpredictable things about going through this process – some people have negative taste experiences and some have enhanced taste experiences. I just hope it gets better sometime so I can enjoy eating again.

Lastly, I feel like moaning a bit about my HMO. Basically, they have been good and have paid for everything except my copays for meds and visits to a specialist (which add up pretty quickly themselves). What I am quite unhappy about is that starting earlier this month, they are requiring me to get my blood labs drawn at an independent lab instead of at the BMT clinic. This means another trip on another day to a lab that is not easy to get to, requiring more time, another car trip, remembering to get it done, remembering to get a prescription for it at my clinic visit prior, remembering to get them to include the diagnosis code on the scrip, remembering to take the scrip, waiting for the results when I go in for my clinic visit because they have to call and have them faxed, which adds up to an hour to my clinic visit, plus the fact that at the clinic, they like to have blood smears so they can look at the blood cells, and there are no smears. And if, for some reason, the results aren’t available when I go for my clinic appointment, it becomes a wasted trip and I would have to reschedule. I guess it is all about saving the HMO money (isn’t that what HMOs are all about?), but I’ll wager the amount they save withers in comparison to what it costs me in time, money, and inconvenience. Oh well. I plan to appeal to someone at the HMO, but have very low expectations about the odds of any satisfaction. I guess I’m lucky to be around and healthy enough to be irritated.

Love,
Justin

Day 304 (10 months)

OK, I admit to being really late with this report on my clinic visit from 11 days ago. I’m tempted to blame the delay on being away on vacation (which I was), but the truth is that I had plenty of time to write it; I just didn’t get around to it. It’s also true that there is some disinclination to hurry up and report when the report seems boring.

My blood counts are slightly worse than they were 2 weeks prior, but still generally pretty good. My liver enzymes rose slightly (not good) to where the doctor decided not to cut back at all on my anti-rejection meds at all, although they didn’t rise enough to cause him any serious concern.

WBC – 4.0, down from 4.3, but still in the normal range
Hgb – 11.4, down from 11.6 and still below normal of 13
Plt – 248, down from 279 and still at a good level
AST-SGOT – 54, up from 38 (below 42 is normal)
ALT-SGPT – 69, up from 44 (below 40 is normal)

Today marks 10 months since my transplant. Being at the Jersey shore on vacation and attending an annual picnic that occurs on June 19 each year are reminders that one year ago when we were at the beach and at that picnic, I had just been diagnosed with MDS and told I need a bone marrow transplant. I don’t remember thinking then about how I might feel one year out, and probably was thinking much more about closer time frames and what I would be going through. However, looking back a year from here, I think if I had given it much thought and compared that to how I feel today, I would have been happy first of all that I was still around, and additionally pleased to be feeling as well as I do. (OK, if you carefully analyze that last sentence, it may be confusing and a bit nonsensical, but maybe you know what I’m trying to say).

After 10 months of deprivation, I’ve eaten several salads and had raw onions (I’m a big fan of onions) recently with no apparent ill effects. While I’m glad to be able to eat more things, I’m still bummed by the fact that almost nothing really tastes good to me these days. Still, the greater variety is good.

I still get winded easily to such an extent that I’m pretty sure that it is more than being out of shape. It is probably due at least in part to being still somewhat anemic. At any rate, I hope it’s not a permanent change and that eventually either I won’t be anemic or that somehow I will be able to overcome whatever it is that is making me feel winded. I was talking to a friend who had a bone marrow transplant over 11 years ago who said that she remembers she had to get used to a new “normal”. I think that’s a good way to put it, and I told her that it’s probably easier for a 53 year old to get used to the idea of new normals because most of us have already noticed that we have to get used to them, whereas for a 33 year old (which is how old she was when she had here BMT), it could be a major adjustment.

I have another clinic visit this Thursday and it will be my last one with my oncologist before he moves on to bigger and (hopefully) better things in Augusta, Georgia. I’m happy for him, but a bit sad for myself. I am also grateful that he helped me through what I hope is the worst of this whole ordeal.

Thanks for staying tuned in for all these months. I’ll try to be more diligent about reporting in a timely manner.

Love,
Justin