A long over due status update - 10/30/10

Several people have called me and asked why I haven't updated my blog in a long time. It has been largely due to pain, and a lack of desire to pass along bad news.

Several weeks ago, my last CT scan showed that my primary tumor (in my right pelvis) had started growing again. In fact, it had grown 0.5cm  along each axis since it had been measured a little over six weeks prior. It is growing into my sciatic nerve and into my sacro-illiac joint. This involvement with the major nerves going to my right leg has made common activities both difficult and painful.

For example, I have to use a special device to put my sock on; walking, and especially going up and down stairs, is very painful; sitting for any length of time (say to write a blog post) is also very painful. Right now I have taken 30 mg of Oxycodone (morphine), along with what is regularly supplied by my pain pump AND a bollus (an extra shot of pain meds) from my pain pump, and I can still only sit here a minute or two at a time.

When my oncologist found that my tumor was growing, he terminated chemotherapy. I am now in the midst of receiving "palliative radiation therapy". This is where you receive lower does of radiation at a time, but you receive it more times.My treatment will be twenty doses of radiation, five days a week for four weeks. Because the pain prevents my from lying still (either on my stomach or on my back) I have been taking the radiation treatment under general anaesthesia. Hopefully they will shrink the tumor enough so that I don't have to continue with the GA.

My pain doctor has largely been playing catchup with managing my pain. As a result, I am going to have an operation called a cordotomy, where they will destroy the pain nerve from my pelvis to my brain. I will no longer be able to feel pain (or hot or cold) in the affected area. I do not know when this will occur.

Because of the pain management issues, Sue and I have decided to at least postpone, if not completely cancel, our trip to London. Hopefully when the radiation and cordotomy are done, we will be able to do the trip.

I largely spend my days lying face down on the bed, propping myself up on my elbows to read. My sister Mary created some foam rubber "butt boosters" which I can sometimes use to prop my tumor off the mattress, so I can lay on my back and watch TV.

I won't deny that there has been a fair amount of crying and wailing through all this. However, I take a huge amount of enjoyment in Sue's and Katie's company. I am still able to appreciate the beauty of a crisp, clear autumn day. I am deeply grateful to my cancer buddy Frank for helping me keep my attitude straight.

Well, I'm going to lie down for awhile. Peace out.