The Way Things Is (as of October 28th)

Oh boy, has it been a week.

I’ve been trying to post regular updates, making sure to put out at least a status update each Wednesday. It’s now very early Saturday morning, and this is the first time I’ve had the time or ability to actually sit down and write something.

Starting last weekend, I’ve been feeling more and more like something was wrong, internally. The pain in my left leg has come back, and is generally staying at its highest level. The good news is that if I really work at it, there are ways I can arrange my legs that will lessen the pain somewhat, but any kind of pressure (including walking) will immediately fire it back up again.

I’ve also been having a high temperature, and it kept creeping up over the course of the week. Over the weekend, it was in the 99s. By Tuesday, it was over 102. I called my oncologist’s nurse each day to see if there’s anything I could or should be doing for the fever or leg pain, and the answer has been to take Tylenol and increase my painkiller dose.

Finally, Wednesday morning, after spending three days sleeping two hours at a time with a wet washcloth on my head, I went into the Emergency Room. I knew there wasn’t much they could do, but my symptoms were starting to mimic what was happening when I had sepsis back in July. That infection nearly killed me, so I decided going to the ER to run some tests on my blood was the safe thing to do.

The staff at St. Luke’s East agreed with me and admitted me pretty quick. They took cultures of blood and urine and mucus to make sure there was no infection, and admitted me overnight for observation.

While I was still being admitted, I started getting phone calls from a different hospital, the University of Kansas. They’re the ones who are handling my bone marrow transplant, and sure enough that’s what they were calling about.


You can’t see my phone here, so just pretend I’m talking into my hand because I couldn’t find a banana

If you remember from last week’s post, scans had found hot spots in both of my legs, and we were holding off on the transplant until we could have an open biopsy to get in there and figure out what was going on. Well, throw that out the window. Now it’s been decided that they’re just going to move forward with the transplant no matter the results.

(Well, that’s not true… if they find a family of malignant Fraggles living in there, that might delay things by a few weeks).

They’ve already selected a donor (all I know is that he’s a 20 year old male, and his blood type is O+), and they’ll be getting him ready over the next few weeks. In the meantime, they’ve scheduled a veritable plethora of appointments for me. Over the next two weeks, I have every possible kind of test scheduled, as well as meetings with a psychologist, a financial planner, a social worker, a teacher, a Native American Shaman, a protocol droid, and Xanthos, the Zoroastrian demigod in charge of medical billing.

The current plan is to have the transplant around Thanksgiving. There’s still a lot of dominoes that need to fall the right way to make this all work, but it feels good to be making progress.

In the meantime, the fever has stabilized somewhat. It’s only gone over 100 degrees a couple of times since I was discharged, and the Tylenol seems to be helping. The leg pain remains a real problem; My oncologist keeps telling me to take more pain medication, so that’s what I’m trying. We tried out a few other painkillers while I was at the hospital – Morphine didn’t do much for the pain but did give me immediate nausea every time it was administered.  Fentanyl, on the other hand, worked great for the pain. The only side effect was that it caused me to sing an a capella version of Avril Lavigne’s “Girlfriend” to my very patient wife.

I’ve spoken with a pain management doctor, and I have an appointment one of these days to see about getting a Fentanyl patch, which sounds like it would be a big improvement.

Finally, one last thing…








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