Month 23

On Monday, I had my regular clinic appointment. My regular doctor was seeing inpatients in the hospital, so I saw another doctor whom I have seen before and liked. Also, I found out my PA, whom I liked very much has left and won’t be back. Apparently, her brother was killed in a pedestrian vs. SUV accident in Manhattan and she left to take over his business there. I’m trying to find a way to contact her to express my condolences and say goodbye. Aside from these things (and having to change a flat tire in the rain), the appointment went well.

My counts were as follows:

..... previous current normal

..... -------- ------- ---------

WBC.. 5.6 .... 4.8 ..... 4 – 11

Hgb.. 10.0 ... 12.1 ... 14 – 18

Plt.. 284 .... 262 ... 150 – 400

These are good counts – my WBC is down a little (probably because I’m not sick), and my hemoglobin is up a bit which is good. Also, my pulse ox reading was 97 again which is really good for me (although in the low normal range). I talked to this doctor about methemoglinemia (see last post about problems with Dapsone), and while he had heard of it, he said it is very rare and is the kind of thing they have to study for board recertification tests, but hardly ever see.

Everything else he looked at he was happy with, so he said I could stop taking Cellcept (an immune suppressant)! That leaves 5mg of Prednisone as my only immune suppressant left (and it is a very low dose)! I asked him when we could think about reducing my other meds, which are really just prescribed because of the immune suppression, and he said I could stop taking the penicillin. That leaves me with just the Prednisone, Acyclovir (anti-viral), and Protonix (for stomach, etc.).

There are many milestones in this process. For example, in August, I will hit my two year anniversary (which will require another bone marrow biopsy/aspiration). But of all the milestones, getting completely off of my meds will be one of the biggest, probably second only to surviving the transplant and coming home, and it may happen next month when I go in again. I’m not sure how I will celebrate, but I will.

A couple of other interesting things the doctor said, which I am writing here partly for my own sake:

• He warned me that people that are sensitive to Dapsone are sometimes sensitive to Bactrum (a fairly common antibiotic) as well.
• I mentioned to him that my taste was still not fully returned and wondered if getting off meds might help with that. He said that while one can never rule out meds for something like that, the more likely cause of the taste problems is still the chemotherapy, which he says often causes taste problems and that some people recover the taste quickly and some take a very long time. He says two years is not unheard of. (Did I just end a sentence with a preposition or not?) I still believe that my taste is improving, albeit VERY slowly.
  

Finally (for now), I woke up early this morning (3 AM) needing to blow my nose like crazy. When I got out of bed a few hours later, my sinuses were still kind of full and I felt a little crummy, and it continues into the afternoon without getting much better or worse. I sure hope I’m not heading for another cold virus wipeout like I have a couple of times already this year.

Until next time, love,
Justin