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.