Tuesday, January 17, 2012

Day 0: Just Barely

Well, it's day zero. My "new birthday" as they like to call it here. I'm going to be born again physically this afternoon, so to speak.

A bone marrow transplant can literally change your DNA. It will change your blood type, though it can change it to the same one you already had. You don't begin to look like the person whose marrow cells you receive, but apparently the reason that the new immune system becomes less and less prone to attacking your body is because your body's DNA slowly begins to match the new immune system!

I'm up at 2 in the morning because I went to sleep at 7:30 in the evening. Somehow, I managed to sleep most of the way through that time, with perhaps only one interruption until 12:30.

Since mucositis doesn't sleep, I got up at 12:30 and took care of preventative maintenance. I made soup for my stomach, rinsed my mouth with a soda/salt solution, had a pectin throat lozenge for my throat, and I went ahead and walked a mile. Not easy!

At 12:30, the reason they woke me up was for vital signs. They do that every 4 hours, so there will always be a midnight and 4 am visit.

My blood pressure has been a problem. It peaked at 173/108 yesterday morning. It got all the way down to 138/88 at one point, but at a 10:00 reading this evening, I was back at 150/100. The 12:30 reading was 161/100. Not getting better.

The "care partner" went to ask about my blood pressure, and that's when I did the soup, the mouthwash, etc. I also walked, wondering if the walk would help some. It helped some. After the walk, my blood pressure was 151/98.

The nurse said, "I don't understand what the problem is with the blood pressure."

I have some thoughts.

My wife got me this card.
Now, I'm not a doctor, but if a person is going through stress at home, say his kid is getting in trouble and flunking out of high school, then don't we say, "No wonder his blood pressure is high"? If a man has financial troubles at work, is working late, and his business is failing, wouldn't we say, "No wonder his blood pressure is high"?

Or, let's say that I was just told, "You may have leukemia," then the doctor left the room to go consult with other people before coming back to give me a final word. Wouldn't you expect my blood pressure to be "through the roof."

So, let's see. Here's some ideas I might have for the problem today:

  • I have been given three times a lethal dose of radiation that only didn't kill me because it was spread over 11 days and half of it went directly to my brain. The radiation isn't still working, but my bone marrow and blood are full of dead and dying marrow and blood cells with radiation damage.
  • I have been given a powerful, directed poison that should be just completing its work of killing almost ever marrow cell in my body, plus destroying the mucous lining in my mouth, throat, esophagus, stomach, intestines, and rectum.
  • I have a stem cell transplant today that marks healing for me, but I've been told has a 10-20% chance of killing me in the next month. The odds are only that good because I'm so healthy.
  • After I manage the next four weeks, then the complications afterward only have about a 10% chance of killing me in the three months following. After that, the prognosis is really good ... assuming I don't relapse.
  • Odds of relapse? Impossible to calculate. Not enough data. We can be confident that there's a better than 50% chance I won't relapse, but it's certainly not 100% (except that I think all those things are in God's hands).
  • To help take care of the risks, I'm taking a number of medications with side effects, and I'm taking a couple (yes, only a couple) that are to manage side effects). One of the medications increases blood pressure!
  • Over the last three days, I've slept in 1-2 hour snippets. This evening I may have managed to pull off two naps of 2.5 hours.
  • My kids are three hours away and will be for another six weeks. The last time I saw them I couldn't hug or hold them, but could only talk to them for five minutes or so. I email and text the older ones.
  • My day is full of little things that I have to do and can't forget. Rinse my mouth, take pills, eat something soothing for the stomach, exercise, keep drinking, keep urinating.
  • I'm helping friends with some pressing financial problems by phone and visits to the hospital. Tax time is coming up, and I've always done the taxes for my business and for a couple others, and I don't feel like I have a good accountant back home to turn them over to.

I don't mean to complain. In fact, I'm not complaining. This is what God's got for me, and I can honestly say that I'm really glad for it. I'm not just accepting it; I think this is a great adventure.

But if we're looking for reasons that my blood pressure might be 150/100, which is 10 points over on both the high and low side—or ever 161/100 or 173/108—I think we may not have to wonder.

Again, I'm not a doctor or anything.

I'll post again later, probably after the transplant. This is Day 0, part 1.

That's assuming I'm not sick as a dog afterward. Jerry keeps telling me the stem cells are going to set me on fire.

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