A Big Change

Let me start off this post by apologizing to all the regulars here. I haven’t posted in forever. Worse yet I haven’t commented on individual posts. I promise to do better in the future.

I made the decision three months ago to go off all cancer related medicine and tests. I now have no idea what my PSA is. It’s wonderful. The biggest change is I have more energy and no more scanxiety.

It wasn’t a hard decision. I’ve been on all the mainstream treatments to the point of failure. The doc wanted me to stay on lupron, get provenge, and start on chemotherapy. It’s questionable that lupron is doing anything more than giving me side effects. I decided a long time ago I wasn’t going to take chemotherapy. My oncologist was ambivalent about provenge. That sealed the deal after talking it over with my wife.

I can’t recommend this path for everyone. A significant element in the decision is I have no bone pain. If/when I develop bone pain I may reconsider my decision. But for as long as I can I’m staying cancer chemical free.

It’s a big change and I just love it. I’ve had some kind of cancer chemical in my body for over ten years. Now I’m chemical free and can spend what time I have left free of cancer drug side effects. I wish all of you could do the same.

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My Room

In a prior post Les posted a response and asked me for a picture of my room. Here is my view pretty much 24 hours a day. Not bad, but it gets old.

Jim’s Room

 

 

 

 

 

 

 

 

 

 

 

 

Some items of note.The wood table at the far right bottom. That’s part of 2 square feet I can reach. I guard and control it fiercely. There’s only so much space a paralyzed person gets to control.

Next up is the lighted tree that sort of resembles a Christmas tree. Lisa likes to have trees up all the time. This is an Easter tree. The little yellow puffs are chicks.

The rest is electronics and a picture of me.

The left wall is missing because there’s nothing on it. Still some decorating to do. And also off to the left unseen is Lisa’s bed.

Enjoy

Jim

Trapped

Seems about time for my update. Physically, it’s been tough. The paralysis, seizures, vertigo, and hallucinations took a toll. I’m happy to report all but the paralysis is under control. My doctors continue to be amazed that I have no bone pain. I’m 10 years into stage IV prostate cancer and have no bone pain. It’s unheard of. I’m hoping it means I get a little more time on the back end.

Emotionally I haven’t been doing as well. I’ve been home just three months and am going crazy, seriously crazy. I’m trapped in this bed. I can’t even roll over to sleep on my sides. I can reach about 2 square feet of space. We have a device caller a Hoyer that’s basically a lift to get me out of bed. The problem is it’s very painful for me to use and the loaner wheelchair isn’t particularly comfortable. (Still waiting on the custom fit wheelchair three months running). So I wake up to spend all my days in the room. Don’t get me wrong. It’s a nice room 77″ tv, one wall all glass looking outside. Still most mornings I wake up crying. I get over it quickly enough, but it’s hard.

After the doctor told be I had six months to live, plus or minus, I sent out a text to all my friends whose text I have who might like to see me. I’ve been pleased by the response so far. If anyone would like to come to Jacksonville Florida to see me, just drop me a line with your cell number.

He is shaken, round and round

No real change to my mobility status. The left leg has limited movement and no load bearing capability. The right leg has no movement and no load bearing capability. It’s been a surreal experience for me. I just think I’ll get up and get something, turn on my bedside lamp, or go to the bathroom. Nope, can’t do any of those things. We have 24/7 caregivers with us. A great crew, but it’s an adjustment to having someone else in your house all the time. We’re working our way through it though.

A couple weeks after I got out of the hospital, I started having seizures, you know the eyes rolling back in your head, can’t talk or control your movements and you start shaking. Back to the hospital for the fifth time in 3 months. They determined there’s a tumor on the inside of my skull, pressing against the brain causing the seizures. They gave me medicine that lowers my sensitivity to brain wave activity. The seizures ended and I was sent home.

It didn’t take long to find out the new meds caused severe depression and killed my taste buds. Working with my personal gp we were able to modify the drugs the hospital prescribed so that I had no seizures and no depression or taste problems.

On balance I’m doing pretty well right now. It bothers me that we have done nothing to directly address the tumor in my skull and while we irradiated the two tumors on the spine that led to my partial paralysis they are both still alive and growing.

I’ve not been given the warmest of feelings from the medical people. The neurologist at the last hospital I went to told me I needed to stop going to the hospital because I was running out of get out of the hospital alive cards. I asked my gp about irradiating the tumor in my skull. Aside from the issues about it being next to the brain, he said these tumors are going to start appearing like popcorn. I told him I really hoped to make it to 2020. He said to concentrate on everything that’s good in 2019. Still I have a positive attitude and enjoy most days. My apologies for taking so long to provide this update.

Landed

I’m home now! It’s wonderful. My thanks to all who sent positive vibes or a prayer

In Rehab

I’ve been in rehab about a week. Progress is slow, but encouraging. My left leg has significantly more movement, but still no load bearing ability. My right leg remains quite weak. My spirits are very good. My wife is keeping me well fed, and the physical therapy staff is great.

Interesting Article

Rubraca (rucaparib), Clovis Oncology‘s oral PARP inhibitor, shrank tumors in 44% of metastatic hormone-resistant prostate cancer (mCRPC) patients with BRCA mutations included in the Phase 2 TRITON2 clinical trial. The treatment, which is already approved for ovarian cancer, also reduced PSA levels — a biomarker of prostate cancer — in 51.1% of patients with BRCA mutations. 

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