My last post was March 11^th and there’s been a lot going on since then. The evening of Tuesday the 16^th I was introduced to some excruciating pain. We had my doctor on the phone and added pain med patches throughout the night and into Wednesday to try to get it under control. A lot of this I don’t remember any more so you’ll probably be getting highlights. I had radiation treatments Thursday and Friday, so by scooting down the stairs and the use of a wheelchair I was able to complete those, but not without a good deal of pain. We had discussions with the doctors about the pain and specifically the pain associated with the radiation and decided to discontinue the radiation treatments, my body just wasn’t able to tolerate it. Throughout this time my world had been reduced to a reclining chair in the bedroom, which is also my bed because of the pain involved getting into and out of bed, and the bathroom.

My doctor had wanted to start chemo after radiation was complete, but we determined that my body was probably too weak to withstand the high dose chemo they’d suggested. So my options are pretty limited. We’ve signed up for Hospice services with the intention of getting me stronger so we have options. Don’t confuse Hospice with giving up, we’re not giving up.

One of the side effects of the pain meds is loss of clarity of thought (which is probably pretty evident as you read this!). The time it takes me to put this posting together is almost embarrassing, not to mention how exhausted I am afterwards.

I’ll try to keep you updated, but bear with me.

I’ve been a little busy since my last posting. Tuesday I had an MRI on my hips. I thought it was only going to be my right hip but they went ahead and did both, which is fine other than it meant about 2 hours on that hard table without moving. I was planning on going back to work after the MRI, but I was so sore that I went home, took some pain meds and just crashed. I’m getting to the point where I don’t care much for MRI’s.

Wednesday I got a call from my radiation oncologist. He wanted to meet with me and start my radiation treatments. Good news, now maybe I can get rid of some of the pain in my hips. He’s treating several areas at the same time so I’m not sure how I’ll hold up fatigue-wise, but I’ll keep pluggin’ along. This time they’re administering the radiation through the back side, meaning I lay on my stomach for the treatment. Shouldn’t be a big deal except that one of the areas that’s causing some pain is in the front part of the ribs; and I lay on a hard table for treatment; and they had a hard time getting everything lined up yesterday; and they had a problem with the machine; so I laid on the table for about an hour and a half. Now everything’s sore on the front side. It’s really not a big deal though, I’m just moving kind of slow right now. Hopefully we’ll get the radiation working and start things moving the other direction. This afternoon I had treatment #2and it was much better, only about 30 minutes.

I’m scheduled for 12 radiation treatments as it stands. There’s a possibility when those are finished we may look at some of the areas not being treated this time, but we’ll have to wait and see. No chemo scheduled for now. It would be way too toxic to have all this radiation and chemo going into me at the same time.

I’ll try to get a little more active in my postings; it’s just still a little unbelievable that anyone wants to hear any of this stuff!

We went to St. Louis for a follow up Friday. We received the recommendation we expected to receive, but of course we’d wanted to hear something else. The Doctor recommended that I undergo an allogeneic transplant, which is a stem cell transplant from a donor other than me. I have many concerns about this transplant. It’s much more difficult on the body and recovery time would be several months and maybe a year or more. I’d have to spend 3 months in St. Louis and even after that, it’d be likely that I’d have complications that would end me back in the hospital.

There are two kinds of allogeneic transplants, relative donor and non-relative donor. The non-relative donor transplant has a very low percentage of success and a high percentage of complications. One of the complications is graft versus host disease where the new stem cells reject the existing cells in my body. This is possible with either type of transplant, but is more prevalent in non-relative transplants. There is always the possibility that the transplants won’t take, again a higher possibility in the non-relative transplant. Of course, if the transplant doesn’t work, then we pretty much wait for the cancer to win. If we don’t try the transplant, we treat what we can with chemo and radiation, and wait for the cancer to win.

At this time I’ve pretty much decided not to pursue the non-relative donor transplant. It would take a tremendous toll on my body and my quality of life would be miserable for months with a very low possibility of success. I’m still uncertain about the relative donor transplant. The relative donor transplant comes from a sibling. There are blood tests that would need to be collected and typed to see if there’s a match, and just because it’s a sibling there’s no guarantee, only about a 25% possibility of a match.

In the meantime, I’ll probably get some high dose chemo this week to try to get things under control; get an MRI on my hip to make sure radiation won’t damage anything going on in the hip; then hopefully start radiation to relieve the pain in my hip.

We obviously have some big decisions to make. My main concern is to have as good a quality of life as long as possible. That doesn’t seem very likely with either transplant option, but we’ll have to see. For now, I do all I can to get healthy and just keep fighting.