The previous post of Big Changes failed to load correctly on some people’s machines. It was coming out as black text on a black background. The post has been updated and should display correctly now.
Advertisements
As I write this, I’m in the hospital with partial paralysis of both legs. The paralysis is severe enough that I can’t walk or get around with a walker.
Through a very tedious series of tests and hospital admissions we diagnosed it as being due to three prostate cancer tumors pressing on the spine. One at my tailbone and two in the thorax region.
Surgery is not an option, so I’m going to irradiate them starting tomorrow. After I’m done with radiation I’ll probably be transferred to an inpatient rehabilitation therapy center for intense physical therapy.
In case you’re curious, I went from full function to partial paralysis over about four days.
I’m holding up pretty well. I think that’s largely due to huge steroid doses and the constant stream of activity involving me. When those end, I have no idea where I’ll wind up. They think there’s a chance I’ll get significant relief, but no guarantee. As far as I know, there’s only one other treatment that’s not as good.
Associated with the new residence in Florida is a new set of doctors. My oncologist back in Texas didn’t believe there was value in trying Zytiga after Xtandi failed. The oncologist here, actually two oncologists, think there might be some gain giving it a try. So today I start taking Zytiga. I hope the side effects are mild. I’m ready for life to be on the easier side.
We took our first Gilded Age trip recently and went to Amelia Island, which is about 45 minutes north of Jacksonville, Florida. We stayed at the Ritz Carlton.
Upon arrival, we were warmly greeted by the valets and shown our way to the reservation counter. The staff were exceptionally friendly, and we were checked in quickly.
The room was unremarkable, but the view of the Atlantic was fantastic.
This shot doesn’t come close to doing it justice.
We settled in for some cocktails at the concierge bar, along with some snacks. A couple drinks later we decided to go back to our room and order room service. The food was absolutely restaurant quality and we really enjoyed it.
We spent the next day relaxing and had a light lunch from the concierge table. For dinner we went to David’s, a highly recommended local restaurant. Our meal was fantastic.
There were some hiccups. The first night I had terrible back problems getting to sleep. We asked for a room with a firmer mattress. They explained that there was a pillow topper that they’d remove and we could stay in our room. That did the trick.
We had hoped to stay one more day to try the hotel’s restaurant, Salt, but when we woke up the fringes of the hurricane had moved in, and the weather was terrible. We decided to call it quits and head home.
To try to give me something to look forward to I dreamed up the idea of gilded age travels. The idea is pretty simple, tour the southeast region by going from nice hotel to nice hotel and eat good food. I think we’ll start our first trip to Orlando within a couple week. Charleston, Tampa, Miami, Ft Lauderdale, Amelia Island are part of the list so far.
I need something to focus on aside from this cancer and hopefully this will do the trick.
As I discussed in the post before the last post, ketamine was one of the paths that I was planning to explore for depression control. I found a clinic that specializes in it and signed up. I discussed the matter with my psychiatrist who was very enthusiastic and gave me a taper down schedule to get off all my psychotropics. I was so pumped.
The program was three sessions, one day apart, each lasting about an hour. I’ve never done drugs, but this made up for it, I could feel and see sounds. Altogether it was a very pleasant experience.
At the end of the first session I felt quite good and was very encouraged. The next two days were a let down. The sessions were fine, but afterwards the depression returned.
In the end the experiment was a failure. I was crushed. I still have to go back to the psychiatrist to see if there are any new drugs.
I haven’t been doing too bad on my own. At the peak of my depression I was taking 6 mg of Xanax a day. I’m now down to one or two, sometimes zero.
The immunotherapy option, Keytruda, had me all excited. Even if the odds were very low that it would score. Unfortunately, one of the preconditions for trying the therapy is that one’s prostate cancer has certain mutations. That’s where the rub comes in.
The most common way to check for the mutations is to sample the biopsy material from way back when the biopsy was performed. Regrettably, M D Anderson lost my biopsy samples.
Second is to capture some of the tumor cells floating in the bloodstream. It appears I have very few as our attempt at this was a total failure.
Third is to sample a soft tumor where the cancer has spread. The good news/bad news for me is my cancer has not spread into any soft tissues.
Fourth isn’t really an option at all. There are prostate cancer cells in my bones, but they’re calcified as I understand it. The process of decalcifying them destroys the ability to detect the mutations.
In sum I’m screwed. Until I have the cancer spread into the soft tissue and get a hit, or I pay for the treatments out of pocket Keytruda is not for me.
