Fifth Anniversary
It's been more than 2 1/2 years since I've posted here. I'm posting now because today is my 5 year anniversary! The bone marrow transplant folks consider patients cured when they hit 5 years without evidence of the disease, but I (and I am sure they) have considered me cured for a while now. I am doing great. I'm on no meds and haven't been for a year or more, I've become very active again with tennis, volleyball, basketball, bicycle riding, disc golf, etc. It's not that I'm great at any of them, but I am doing them and probably about as well as I would have if I had not had leukemia and a bone marrow transplant. Of course, having a couple of truncated fingers (see Month 28 post) has some effect, but apparently the body can compensate pretty well even for things like that. I know quite a few bone marrow transplant survivors and most of them are still on some meds and/or have lingering effects of Graft Vs Host Disease (GVHD). I consider myself quite fortunate and have no good explanation as to why I'm doing as well as I am. I doubt it’s karmic.
As far as catching up, the main thing that happened after my last post in November of 2006 is that on Christmas Eve of that year, I got a pain in my jaw (lower right) that got worse quickly enough that I called my dentist that day. When I described the problem to him, he said it sounded a lot like an abscess and he put me on antibiotics. On the day after Christmas, he called to see how I was doing and wanted to see me so I went in. After examining me, he said it wasn't an abscess and he had no good explanation. I therefore called the Bone Marrow Transplant clinic and went in to see a doctor there. My regular doctor wasn't there so I saw someone who was not very familiar with my case, although he was the head of the transplant program. He looked in my mouth and saw some small white lesions on the right side of my mouth and asked me if I had any traumas recently like an illness or emotional trauma. I thought for a few seconds and couldn't think of any illness and so I said as much. The PA who was there and did know my case mentioned that there was the finger amputation that had happened just a month prior. Oh yes, well there was that. I laughed from incredulity that I hadn't remembered something that was actually huge.
It turns out that I had shingles or herpes zoster on my trigeminal nerve. Shingles is actually from the herpes virus that causes chicken pox and in fact, only happens to those who have had chicken pox and is usually triggered by some trauma or stress and is more likely to happen to people with compromised immune systems. I had all the elements - chicken pox, a compromised immune system, and a trauma. The BMT doc put me on another antibiotic for that and said that it was serious and that if it got into my eye as it sometimes can, he would put me in the hospital with an antibiotic drip. Well, it didn't get into my eye, although it did get very painful. I even had a bout one night of something called Trigeminal Neuralgia which some consider the most painful thing that one can experience. It came on very suddenly and really scared me because the pain was extreme and I had no idea what was happening. It felt like the right side of my face was literally on fire and was going to melt right of my skull. I woke up my wife and told her about it and that I didn't know what to do. The good news is that it lasted maybe 2 minutes (I'm sure it was not as long as it seemed) and then subsided gradually. Thankfully, it only happened to me once, but there are those who get it repeatedly, and among those, some actually take their own lives because of the severity of the pain and the unpredictability of its occurrence.
The shingles took a long time to get better and it really is an extremely unpleasant condition that I wouldn't wish on my worst enemy. I suffered with what is called post herpetic neuralgia for years and in fact, my lower right jaw and cheek are still somewhat numb, although it's not enough to bother me most of the time.
Aside from that, my health has been really good. When I get colds now, they tend to last a lot longer than they used to and I've had some sinus infections that have gone on for weeks and weeks, but overall, I can't complain. I had bone marrow biopsies at years 3 and 4 and they, like all the others, showed no evidence of the old bone marrow. Like I said earlier, I feel blessed and quite fortunate that not only am I still alive, which I almost certainly would not be with the transplant, but also doing extremely well. I also continue to be and always will be grateful to those who have supported me through the ordeal. In a way, they are the real blessing
As far as catching up, the main thing that happened after my last post in November of 2006 is that on Christmas Eve of that year, I got a pain in my jaw (lower right) that got worse quickly enough that I called my dentist that day. When I described the problem to him, he said it sounded a lot like an abscess and he put me on antibiotics. On the day after Christmas, he called to see how I was doing and wanted to see me so I went in. After examining me, he said it wasn't an abscess and he had no good explanation. I therefore called the Bone Marrow Transplant clinic and went in to see a doctor there. My regular doctor wasn't there so I saw someone who was not very familiar with my case, although he was the head of the transplant program. He looked in my mouth and saw some small white lesions on the right side of my mouth and asked me if I had any traumas recently like an illness or emotional trauma. I thought for a few seconds and couldn't think of any illness and so I said as much. The PA who was there and did know my case mentioned that there was the finger amputation that had happened just a month prior. Oh yes, well there was that. I laughed from incredulity that I hadn't remembered something that was actually huge.
It turns out that I had shingles or herpes zoster on my trigeminal nerve. Shingles is actually from the herpes virus that causes chicken pox and in fact, only happens to those who have had chicken pox and is usually triggered by some trauma or stress and is more likely to happen to people with compromised immune systems. I had all the elements - chicken pox, a compromised immune system, and a trauma. The BMT doc put me on another antibiotic for that and said that it was serious and that if it got into my eye as it sometimes can, he would put me in the hospital with an antibiotic drip. Well, it didn't get into my eye, although it did get very painful. I even had a bout one night of something called Trigeminal Neuralgia which some consider the most painful thing that one can experience. It came on very suddenly and really scared me because the pain was extreme and I had no idea what was happening. It felt like the right side of my face was literally on fire and was going to melt right of my skull. I woke up my wife and told her about it and that I didn't know what to do. The good news is that it lasted maybe 2 minutes (I'm sure it was not as long as it seemed) and then subsided gradually. Thankfully, it only happened to me once, but there are those who get it repeatedly, and among those, some actually take their own lives because of the severity of the pain and the unpredictability of its occurrence.
The shingles took a long time to get better and it really is an extremely unpleasant condition that I wouldn't wish on my worst enemy. I suffered with what is called post herpetic neuralgia for years and in fact, my lower right jaw and cheek are still somewhat numb, although it's not enough to bother me most of the time.
Aside from that, my health has been really good. When I get colds now, they tend to last a lot longer than they used to and I've had some sinus infections that have gone on for weeks and weeks, but overall, I can't complain. I had bone marrow biopsies at years 3 and 4 and they, like all the others, showed no evidence of the old bone marrow. Like I said earlier, I feel blessed and quite fortunate that not only am I still alive, which I almost certainly would not be with the transplant, but also doing extremely well. I also continue to be and always will be grateful to those who have supported me through the ordeal. In a way, they are the real blessing
