Discharged (Part 1)

Posted: August 23, 2017 in The Battle Against MDS

After 35 days in the hospital I was finally discharged. The bone marrow took that long to wake up, and in fact hadn’t really awakened at all. But the doctor determined that enough signs were there to indicate that a “wake up” was happening soon and he felt that I needed to be home for at least a few days before going back in for my stem cell transplant. So he cut me loose, despite my neutraphyls being just .08 and white blood cells at .04. My hemoglobins were at 78 and because I was being sent home he gave me a blood transfusion (normally we get these if hemoglobin gets below 75).

I love being at home. Sleep in my own bed, rest on my own couch, grab my own meals from my own kitchen (or get my wife to!). However, the stay at home was tainted. On Wednesday (I was released the Thursday) I received the best bone marrow biopsy I ever got. Followed by a lumbar puncture (LP) that also wasn’t bad. HOWEVER. The LP resulted in terrible pain in my neck that forced me to lie prone and flat in my bed for Wednesday. I was told that this would last 24 hours and that coffee and lots of liquid would help. Thursday, however, was the same thing. I could hardly hold my head up. I had no strength in my neck and there was enough pain to give me a headache. I got home at five o’clock and took two Robaxacal. That helped immensely. In fact, it cured me for Thursday night, I was almost 100%.

However, I awakened Friday with the pain back and the Robaxacel didn’t do anything to help. So I went to the chiropractor who has gotten me out of several jams in the past. And you know what? He helped. Again I was nearly 100% and my Friday was saved. HOWEVER. Saturday the pain was back again. I went straight to the chiropractor and this time what he did didn’t help at all. I went home and tried Robaxacel and Tylenol. No dice. Nothing worked. I had to lie prone for the day and drank lots of water.

Sunday it felt a little better, but holding my head up for more than 20 minutes was a chore. Monday it was better still. So I finally sat at my computer and did some work. I was able to work for 30 minutes, then lie down for 20 minutes, back and forth over and over. Not ideal, but I did what had to be done.

On Tuesday it was better still, and this time I could hold my head up for an hour. My wife and I went to the hospital for a scheduled blood check and sure enough all my counts went up a lot. I was again told to have coffee, it would help with the neck pain. So I had one, and it did help. Now today, Wednesday, my neck feels good. At the computer for two hours and still fine. Drinking coffee now. So I get to ‘really’ enjoy my family for one day. Tomorrow I check back in for what will be about 45 days.

It’s scary, I won’t lie to you. More chemo, plus radiation to boot. Then the stem cell transplant on the 30th. Then recovery and hope.

Two positives – One is that, although not necessary, my donor’s blood type is the same as mine. So that helps a bit, gives a bit of an advantage. Second, the last round of chemo got my blast count (the cancer) down below 5%. It needed to get below 10% for the transplant to proceed and the lower the better. So I feel good about this.

 

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