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
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
3 Comments:
Dear Justin,
I say yipee hooray for boredom. Looking back a year, would you have thought your health would be in a settled enough state to be bored by it? So I see your sloth in reporting as a good sign. Keep it up!
Love,
Lisa
Justin,
As you can see by the date of this comment I too have not vistied your blog for a while.
I remember talking to you at the June 19th picnic last year and remembering how I felt. My heart went out to you then as it still is today.
Thanks for being you and writing from your heart.
Love ya Man.
Alan J Kiel
Hi Justin -
Your comment: "... 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..." made me smile a big smile! If that isn't the truth!
Glad you got to get away for a bit, and are tasting life and getting winded. Both will improve.
All the best,
Marcia
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