Day 356
I guess I have a bit of catching up to do. Today I had my regular clinic visit since my last entry, but last week, I also went in for my one year bone marrow biopsy and aspiration. That’s right, I getting darn close to my one year anniversary – notice what day this is.
Although I’ve had a cold for at least 2 weeks (mostly coughing) that makes me feel kind of lousy, I’m really doing pretty well overall. I feel like I doing well and the doctors confirm that they are happy with where I am.
.....last month last week today normal
.....---------- --------- ----- ---------
WBC..... 5.0....... 5.5.... 6.9.. 4 – 11
Hgb.... 11.1...... 11.3... 10.8. 14 – 18
Plt... 199....... 235.... 217.. 150 – 400
AST.... 43................ 31... 10 – 42
ALT.... 46................ 23... 10 – 40
So my counts are all good, including my liver enzymes being well within the normal range for the first time in a while. I asked if my WBC might be up a bit because of my cold and the doctor said maybe, but it’s a minor spike. I’m still trying to get in shape and I’m finding I have to be more patient with it. I’ll think I’m doing better, and then I get discouraged because the next time on the tennis courts, I tire quickly. I have excuses like the heat and my cold, but I want to be able to do more without getting so winded.
The bottom line is that the doctor has started cutting back on my anti-rejection drug. I’m going from 4 pills a day to 3, and he expects to be able to cut back one pill a month going forward, which means I could be off altogether by November! I sure hope so. I saw a doctor today that I hadn’t seen in the clinic before (except that he finished my biopsy last week – more on that below). He says my slight anemia and my taste problems (which are persisting) could easily both be due to meds. He says several of my meds could affect my hemoglobin and another could affect my taste. This is in contrast to the last doctor who thought they might both be due to GvHD. Neither could state their case with certainty, but it sure seems like an indication that there is still a lot they don’t know. The doctor today also said my cold may be hanging on because of my immune-compromised state.
I probed the staff about the possibility of me going to see my son in the Peace Corps in Guinea in December, and they said that while I might not be immune compromised any more, the inoculations that are required might not be effective so soon after coming off the meds, so I could possibly not be protected from malaria and yellow fever, etc. I’m sure it’s not worth the risk, so maybe next year.
My bone marrow biopsy and aspiration I think may have been my ninth. At the BMT clinic, it’s usually the Physician’s Assistants (PAs) who do them, and this time I got one that hasn’t done mine before because my regular PA was not in. The one who did it is very nice and not very big – probably something like 5’4”, 119 lbs. I warned her that everyone who does the procedure on me comments that my bones a very hard, and she did fine on the aspiration (which is done first). When she went in again for the biopsy, she tried once, got a stool to be able to put more weight on the needle and tried a couple more times, then summoned the doctor, who happens to be about 6’8” tall and didn’t need a stool. He got in pretty quickly but said the bones were indeed hard. I told the PA that I appreciated that she called in reinforcements so quickly when she had a problem, because I imagine some would stubbornly insist that they could do it. She said she is clear about not having patients suffer for a little bit her own self-pride.
I got the results of the chimerism studies of both the bone marrow and the blood today, and once again, they show 100% donated bone marrow, as they have all along. They clearly do not expect the leukemia to make a comeback at this point, and it will probably be at least a year before I would get another biopsy. Who knows – maybe I’ll never need another again.
That’s enough for now. I go back in September for my next appointment, so that’s when I will probably report again unless something happens in the meantime.
Love,
Justin
Although I’ve had a cold for at least 2 weeks (mostly coughing) that makes me feel kind of lousy, I’m really doing pretty well overall. I feel like I doing well and the doctors confirm that they are happy with where I am.
.....last month last week today normal
.....---------- --------- ----- ---------
WBC..... 5.0....... 5.5.... 6.9.. 4 – 11
Hgb.... 11.1...... 11.3... 10.8. 14 – 18
Plt... 199....... 235.... 217.. 150 – 400
AST.... 43................ 31... 10 – 42
ALT.... 46................ 23... 10 – 40
So my counts are all good, including my liver enzymes being well within the normal range for the first time in a while. I asked if my WBC might be up a bit because of my cold and the doctor said maybe, but it’s a minor spike. I’m still trying to get in shape and I’m finding I have to be more patient with it. I’ll think I’m doing better, and then I get discouraged because the next time on the tennis courts, I tire quickly. I have excuses like the heat and my cold, but I want to be able to do more without getting so winded.
The bottom line is that the doctor has started cutting back on my anti-rejection drug. I’m going from 4 pills a day to 3, and he expects to be able to cut back one pill a month going forward, which means I could be off altogether by November! I sure hope so. I saw a doctor today that I hadn’t seen in the clinic before (except that he finished my biopsy last week – more on that below). He says my slight anemia and my taste problems (which are persisting) could easily both be due to meds. He says several of my meds could affect my hemoglobin and another could affect my taste. This is in contrast to the last doctor who thought they might both be due to GvHD. Neither could state their case with certainty, but it sure seems like an indication that there is still a lot they don’t know. The doctor today also said my cold may be hanging on because of my immune-compromised state.
I probed the staff about the possibility of me going to see my son in the Peace Corps in Guinea in December, and they said that while I might not be immune compromised any more, the inoculations that are required might not be effective so soon after coming off the meds, so I could possibly not be protected from malaria and yellow fever, etc. I’m sure it’s not worth the risk, so maybe next year.
My bone marrow biopsy and aspiration I think may have been my ninth. At the BMT clinic, it’s usually the Physician’s Assistants (PAs) who do them, and this time I got one that hasn’t done mine before because my regular PA was not in. The one who did it is very nice and not very big – probably something like 5’4”, 119 lbs. I warned her that everyone who does the procedure on me comments that my bones a very hard, and she did fine on the aspiration (which is done first). When she went in again for the biopsy, she tried once, got a stool to be able to put more weight on the needle and tried a couple more times, then summoned the doctor, who happens to be about 6’8” tall and didn’t need a stool. He got in pretty quickly but said the bones were indeed hard. I told the PA that I appreciated that she called in reinforcements so quickly when she had a problem, because I imagine some would stubbornly insist that they could do it. She said she is clear about not having patients suffer for a little bit her own self-pride.
I got the results of the chimerism studies of both the bone marrow and the blood today, and once again, they show 100% donated bone marrow, as they have all along. They clearly do not expect the leukemia to make a comeback at this point, and it will probably be at least a year before I would get another biopsy. Who knows – maybe I’ll never need another again.
That’s enough for now. I go back in September for my next appointment, so that’s when I will probably report again unless something happens in the meantime.
Love,
Justin
