Day 132

At my clinic appointment today, the blood counts were not significantly changed. My hemoglobin was down a bit, but since I am not excessively fatigued, they are still willing to forgo meds that would bump it up.

WBC – 3.9 (down from 4.8 but still at a good level)
Plt – 230 (up from 200 and at a good level)
Hgb – 10.0 (down from 10.5 and not at a good level, but not alarmingly low)

Most significantly, my doctor did decide to reduce the anti-rejection drug (Prograf or tacrolimus) from 3 a day to 2 a day. Yes, he is going to be gone until 1/17/05 (back home to southern India, but not the coast, so his family was safe from the tsunami) and he told me to come back in two weeks instead of the usual one. I asked him if that meant he didn’t expect a reaction to the decrease in the medication right away and he said no, it didn’t mean that, and if I started to notice increasing signs of GvHD, I should call in and get seen sooner than two weeks. I’m glad to get started on the weaning process and feel good that the doctor is willing to start it when he won’t even be around for a couple of weeks.

I am going in to the office where I work a few days a week now and it seems to be working well. My hair is growing slowly and seems to be curlier than before. It may also be grayer, but it may also be that the gray hair is growing faster than the darker hair.

Since I don’t have another clinic visit scheduled until 1/13/05, if I continue to cruise along without significant change, I may not write here until after that appointment. However, if I have something to report before then, I will.

I find myself thinking about the people affected by the earthquake/tsunami in southern Asia and feeling very sad for the destruction of people’s lives and property there. Once again, it can be a reminder that while I know I am not any more blessed by God than any other person, I do have much to be grateful for. There is much that we all take for granted and it is good to remember that we do so and try to be mindful of some of the those good things we take for granted most of the time.

Have a good new year.

Love,
Justin

Day 126

At my clinic appointment yesterday, my blood counts were pretty much the same as last week, which is to say pretty good. My white blood count and platelet count are both good. My hemoglobin remains on the low side (the doctor would like to see it up around 12 or 13), but since I am not experiencing excessive fatigue, he is deciding not to give me Procrit or some equivalent. The doctor is disinclined to give another shot unless it’s really needed, and that’s fine with me.

WBC – 4.8
Plt – 200
Hgb – 10.5

I’ve still got remnants of a cold. It started out with a sore throat and now is just some head congestion. It’s not terrible, but I think it is making me feel kind of lousy all over. Most mornings I wake up with a slight headache that usually recedes during the day.

The doctor says I look really good and am doing very well, with few signs of GvHD. He therefore said that he might start weaning me off of my anti-rejection drug next week, even though he won’t be around for the next 2 weeks. That may mean that he wouldn’t expect to see an increase in GvHD right away, but I didn’t query him about that because I didn’t wonder about it until later. Although a part of me is a little nervous about how the GvHD will manifest and how severe it will be, the bigger part of me is anxious to move on and get off the drugs so my life can get back closer to normal.

Some of you might be interested that I got a bill from the hospital a few days ago. Take a guess how much was billed for just the hospital stay of about 3 weeks before you read on ……………………………………………………………………………………………………………………………………………………… Well, it may be considered by some to be tacky to talk plainly about money and finances, so I will just say that 3 such hospital stays in the BMT unit would approach $1 million. It’s a good thing we have health insurance that covered half of it. I’m just kidding – actually our health insurance covers virtually all of it. It also seems a little strange to me that staying in a hospital essentially costs me nothing, but when I come home, dramatically reducing the cost to the insurance company, it starts getting more expensive to me. I have copays for all the prescription medications I get and for all the visits to the doctor. That gives me a financial incentive to stay in the hospital as long as possible. For all the non-financial reasons, however, there’s no way I’d want to extend the hospital stay at all.

It’s Christmas Eve, and in visiting with friends and family over the holiday season, I find I have a special appreciation for the opportunities to be with people I love. As hard as my health situation has seemed over the last six months, I have friends who have terminal cancer, and one who was recently diagnosed with ALS. I realize that among the many things I have to be thankful for, one of them is that my situation holds the possibility and hope that I can be cured. I am also acutely aware that I’m not in charge – none of us is. Our lives and situations don’t go strictly according to our plans except for the brief instances when our plans happen to match the Lord’s plans.

Have a great Christmas and know that your love and support have made a huge difference in my life.

Love,
Justin

P.S. If Eric or Gail Masson reads this, please know that you’ve been in my thoughts and prayers, and I find myself wondering how he is doing. I know others that read this blog wonder also. We’d love an update.

Day 119

At my weekly clinic appointment yesterday, my blood counts were good.

WBC – 4.7 (up from 3.7 and in the normal range)
Plt – 190 (down from 198, but still in the normal range)
Hgb – 10.8 (up from 10.7, and still a little below the normal range of 11 – 18)
ANC – 3.6 (up from 2.7 3 weeks ago and well into the normal range)

I had some minor health issues this past week, including some intestinal cramps, a mild sore throat, and a couple of restless nights, but nothing serious. I’m still taking Neupogen once a week to keep the WBC up and although the doctor had said last week that he hoped we could skip the appointment next week, he decided that I should come in, mainly to keep an eye on my creatinine levels, which are a bit high but not dangerously so. I think I previously referred to this as creatine levels, but I now think that creatine is a supplement one takes to enhance anaerobic performance. Creatinine is a byproduct of creatine, but is also what they measure in the blood to see how the kidneys are doing.

Not much else that’s new.

Love,
Justin

Day 111

I had another clinic visit today and there wasn’t much change. My blood counts were as follows:

WBC – 3.7
Hgb – 10.7
Plt – 198

They were pretty happy with my WBC and it looks like I’ll be taking Neupogen once a week to keep it boosted. The platelet count is fine and the hemoglobin is a little low, but since my energy level seems to be pretty good, the doctor said he wasn’t going to try Procrit to boost yet as he was considering. When I got home, the clinic called and said I needed to come back in tomorrow to get a shot of some other hemoglobin booster, but when they remembered that I had the Neupogen at home already, they decided I didn’t need to come in after all.

I got some topical ointment for the GvHD on my face and I discovered it contains tacrolimus, which is the same drug as my immune suppressant that I take every day. Of course, when I picked up the prescription, my co-pay turned out to be $35! Ouch. Apparently tacrolimus is very expensive and for health insurers, falls into that third tier (above the name-brand tier).

I asked the doctor about the timing of weaning me off the immune suppressant or anti-rejection drug (called tacrolimus or the brand name of Prograf), partly because part of me feels like getting on with things so I can get back to a more normal life. I asked if he was waiting until he saw something in my blood labs or something. He said no, he was just waiting because he and others around the country who do bone marrow transplants have found that if you rush things, the GvHD can be really nasty. They’re still learning how different mini-transplants are from the older full transplants where the GvHD seemed to kick in much quicker. If it means less severe GvHD, I’m willing to wait. As a result, I’m not expecting much to change between now and mid January, which is when he says he is thinking about starting the weaning process.

On the positive side, I did eat some pizza from a restaurant last weekend! I know it doesn’t sound exciting, but it was a real treat for me (Shrimp Bella Venezia).

I’m also working from home (software development) more these days, and it feels good.

On the more negative side, I’m really noticing what they call “chemo brain” wherein my brain really doesn’t seem to work as well (don’t tell the people at work). The number of things (like names) that I forget these days is astounding. There are other symptoms which can be quite discouraging at times, but they tell me it’s not a permanent condition. I sure hope that’s true.

Love,
Justin

Day 105

Well, I’ve passed day 100 and I’m still here. I’m not sure about the significance of 100 days, except that it seems to be where the transplant team separates acute GvHD from chronic GvHD. I think it’s a bit more than that, but I’m not clear on what the “more” is. I went in for my weekly clinic visit yesterday and it was not too eventful. My blood counts were pretty good. My WBC was 2.7 after almost 2 weeks with no Neupogen, so it was good that it was well above the 1.3 it had gone down to a few weeks ago. However, it is still a bit below normal, so the doctor had me give myself another shot of Neupogen when I got home yesterday. He will see where my WBC is then and may have me take a weekly shot for a while.

WBC – 2.7
Hgb – 10.5
Plt – 220

My platelet count is good and my hemoglobin is a little low but good enough. The doctor thinks the slightly low counts could be a form of GvHD. While my intestinal problems still seem to be better and the skin rash on my torso is definitely less than it was, there is clear evidence of GvHD on my face, which while not bad, is manifested by a darkness and dryness on my forehead, cheeks, and ears, accompanied by a slight itching. I was prescribed a topical ointment for it and still have not started in with the Prednisone. They also said I could stop the IV magnesium and saline, which is nice because it takes about 4 hours each time.

The doctor has also not started decreasing my immune suppressant drug yet, because he thinks that at this point, it might allow some more severe GvHD than he would like to see. With the newer mini-transplants like I got, he thinks the weaning has to be delayed more than with the older fully ablative transplants from which GvHD seems to get more of a head start.

The doctor also said I could try some food not cooked at home, but I should be careful that it is heated well enough to kill any germs or other infections. He said that I could have a pizza, for instance, if it didn’t have vegetables that weren’t well cooked. It’s kind of exciting although I haven’t done it yet. Maybe this weekend.

My wife and I have also started attending a bi-weekly support group for BMT couples. We’ve been to 2 meeting so far and it has been very nice. I’m the most junior BMT patient by quite a bit – the others are more like 2 - 4 years post transplant.

I’m still feeling pretty good, doing some yard work and some work work (from home). I hope it lasts.

Love,
Justin