Thursday, March 22, 2012

Day 65

I haven't been blogging much because my blogs seem boring. I'm in a place of gradual recovery, but I'll give you an update on how things are going.

My platelets are finally going up regularly. They were 65 today, and they've been steadily rising for a week. Platelets are the cells that let your blood clot, and 135 is the bottom of normal. Under 30 or under 20 can cause some real problems with bleeding, and chemo and transplant patients hover around that level, being infused with platelets every couple days, until counts start recovering. 65 is nowhere near normal, but it does allow blood to clot so you don't have to worry about bleeding or bruising quite so much.

I'm still coming in every day to get Foscarnate, which is a medicine to control CMV, a virus that about 70% of the population has. In most people it just sits dormant, but it can be life-threatening in an immuno-compromised patient. I've been getting the Foscarnate for about two weeks, and my CMV levels have dropped from over 2000 to just over 200. That's a good thing.

My other blood counts have been encouraging, too. My white blood cell counts (that's all the immune system cells) and neutrophil counts(that's only those that fight bacteria) have been steady in the normal range without any booster shots, such as Neupogen.

I've found out that the reason I'm on Photopheresis, where they pull blood from my body, separate the T-cells, and shine UV light through them, is because I had graft-vs-host disease both in my skin and in my gut. They treat GVHD not only with medicines that suppress the immune system, but also with steroids. Steroids have a bunch of side effects, though, and the Photopheresis is an attempt to get me off steroids.

We're weaning off the steroids I'm taking now, and so far, so good. No rashes, and my appetite and taste for foods are increasing, not decreasing. It will take another two weeks at least to wean all the way off the steroids, so we're only about halfway there, but the Photopheresis seems to be working.

In the meantime, I'm not sure if I've mentioned that my son is getting married April 29, but the doctor and the nurses have promised that it will be no problem to get a few days away from the clinic to prepare for and attend that wedding. We're very excited.

My son Noah and his fiance, Dassi

Oh, exercise. I lost a lot of weight in the hospital when I wasn't eating, and a lot of it was muscle weight. I got very weak and looking in the mirror is frightening. Being bald and skinny, I look like I'm from a refugee camp.

The weakness means that exercise is easy, though. A half-mile walk is a long walk, and for upper body exercise, I have a stretch band. The stretch band is nice, as I can roll it up when I want a lot of resistance, or let it out when I just want to move my joints a bit.

It's all working. I'm walking a flight of stairs by our apartment on a repeated basis, and my legs don't wobble near so much as they did. I can even run a few stairs! Yesterday, I managed to get myself in a pushup position, though I could only go down about three inches. So I went down three inches as many times as I could. I am intent on getting some of my muscle mass back and looking somewhat normal.

In this state, you realize how much daily life is exercise. When I get up in the morning, if I shower, make my own breakfast, take my pills, and gather my things, I'm on my feet for 45 minutes straight. It's all walking and moving, so I can feel it in my legs and body, and I usually have to sit for 10 minutes or so before I'm ready to leave the house.

And that, of course, is happening every morning because of the Foscarnate. Normally, I would be coming to the clinic two or three times a week, but I have to come every day to get that Foscarnate infusion. I think there's about one more week of that, though the following week I have other appointments with cardiac doctors and such like.

Despite the daily trips to the clinic, I feel the fact that life is heading towards a new normal. I have some responsibilities, keeping up on the blogs, and especially on the Through the Bible blog. I've got tax issues to help others with back at the business at home, which I can only do by email and phone. Taxes are no fun, but it does feel like I'm back to life rather than laying in a bed without the energy to do anything at all.


  1. It's never boring, especially for those of us who are soon to follow. Thank you for your candid and honest descriptions and explanations. We praise God with you for the progress and pray with you for complete healing and His daily gift of grace and strength.

  2. Thank you for the update! Every little bit helps :-)

    Love you dearly! XOXOXOXO :-)