More good news.

 I had my regular check-up on Thursday, and the news is good. My white blood cell count has finally started to climb. In fact it has doubled since last week. My liver and kidney function tests are completely normal. Also, we got the results of the blood chimerism test, and that shows that 90%+ of all my blood is being made by the donor cells, so the transplant is going very well.

It has been warm and sunny here, and I have been getting out more. I was sore yesterday from my hike on Mt. Ascutney. Today, my muscles feel a little stiff, but in a good way. I am going to get out this afternoon for a short hike on the flat.

My energy has been gradually improving and my brain fog has been slowly clearing. I have been having a little trouble sleeping, but since I can nap whenever I want, it is not really an issue. Some days are not productive - I expend all the energy I have doing basic tasks. Of course, just a month ago, I could not routinely do basic self-maintenance tasks - Becky had to fix me every meal and wash the dishes. Now, though, some days now are productive as I pick away at various projects that I had put on hold over the past year.

I still have months of healing to go, and the doctor carefully cautioned me that I am not out of the woods yet, but it is looking pretty darn good. I try not to worry too much about things that I can not effect, but hearing that my white blood cell counts are finally coming up, and that the chimerism is holding have taken off a weight that has been present for the last year. Infection is still a dangerous risk (my white blood cell count doesn't really help against infections because I am on immune-suppressants for the next 4-6 months). But at least it is one that I can take precautions against.

We even have a tentative date to move back to Maine - the weekend of May 11th.

Birthday!

I turned 45 last Tuesday, and that was an achievement in itself. It has been a rough year, and there were times when it was not clear that I was going to see my 45th birthday. Getting a year older was the best birthday present that I could have gotten. I guess there is nothing healthier than having birthdays - the more you have the longer you live.

My brother also headed up raising money for a surprise present for me. Thank you everyone that contributed to my iPad! It was completely unexpected and blew me away. It is really the perfect present for me in that I am too frugal to buy one for myself, and I absolutely love it. I have only had it for a few days now, and can see that by next month I will not fathom how I got along without it.

After I played with it for a day, I can see that it really lets my geek flag fly. The very first apps that I downloaded included 2 reference manuals, a slide rule, 2 chess games, a graphing calculator, a second calculator (that does handwriting recognition) and a star chart. I am who I am.

Becky made me a black forest cake, which is my favorite.

It was a good day.

Day 71, No more graft/host disease!

Had another round of blood tests today. Last week I mentioned that my  tests showed that I have host/graft disease of the liver, and I was a little bummed out by it (even though the doctors were hoping for some because it is good in the long run). Instead of lasting the 2 months that it was expected to last, it appears to be completely gone. My liver (and kidney) functions are testing completely normal.

The last issue that I have is that my white blood cell count is still lower than we hoped for. It is not a cause of serious concern at this point, there are a number of things that the doctors are going to try that might help my counts come up, and there is pretty good chance that the structure of my marrow (the stroma) has been damaged by the treatments in such a way that it is simply going to take a long time for it to heal correctly before my new bone marrow will be able to make lots of white blood cells.

And, of course, I am still on high immune suppressants, and the combination of immune suppressants and low white blood cell counts means that I still in a high-risk part of my treatment. So I am continuing to be vigilant with bacteria, virus, and fungus precautions.

I have been feeling quite a bit better this week (it might just be the massive amount of steroids that they have me on). It might also be that spring has finally reached Vermont, and I have been going for nearly daily walks in a nearby woodland park. Walking in the woods has always done so much to sooth my anxieties and heal my soul.

I have to remember though, that despite feeling better, I have practically no immune system. I don't have to wear my filter mask in the woods, but I can not touch any wood or soil. I put my mask on if I can see people or pets. I have to put my mask on if I catch any scent of manure or woodsmoke. I have to be vigilant about washing my hands and face, washing my food, including things like the outsides of oranges and cans.

The odd thing, I think, is that there is no real correlation between how I am feeling and how strong my immune system is. I have always tended to imagine that the better I felt, the stronger my immune system was, and the less I had to worry about getting sick. But now, there is no relationship. I can only go by the blood tests and see if my neutrophils have gone up or down or stayed the same.

Anyway, things are looking nearly as good as could be hoped for - good enough that I might be able to skip one of my bone marrow biopsies! And there is a good chance that Becky and I will be able to move back to Maine within a month or so. 

Day 67, feeling better but have some graft/host disease.

It has been quite a while since I posted, but very little has changed. This part of the healing process is like slogging through hip-deep mud in the fog. I have a hard time to tell that I am getting better unless I compare it with last month, when I was metaphorically slogging through chest-deep mud in the fog. But things have been steadily improving. I have a little more energy, a little less fatigue, a little less pain, and a little less nausea.

I was hoping that my blood tests would be stable, and we would start having to go to the hospital every other week, instead of weekly, but last Thursday we had a slight hitch. It was  found that I have some graft/host disease primarily in the liver. This is not necessarily a bad thing. The doctor was hoping that I would have a mild case at some point, as it lowers my chance of having a relapse of lymphoma in the future.

There are a couple of ways that graft/host disease can manifest - in the liver, in the skin, and in the GI track are the most common. Of them, the liver is the one that takes the longest to get over, but it tends not to have any side effects if it is kept under control. He upped my immune suppressants slightly, and put me on steroids to contain the problem. It should correct itself in about two months.

I have been feeling pretty isolated. Because I am on immune suppressants, I can not go out in public, and I don't have many friends here. Other than Becky, and the people at the hospital, I see someone else less than once a week. However, if my bloodwork this week show that the graft/host is stable, then there will be no real worries, and we will go to meeting every two weeks instead of every week, which will allow Becky and I to move back to Maine. At the very least, because we will be moving in with my Mom, that will double the number of people that I see on a regular basis, and it will also make it pretty easy to pop up to Belfast for a weekend. So I am really looking forward to that.

Leif