Friday, December 22, 2017


Incontinence, continued





I may have mentioned this in an earlier posting, but I have had incontinence three times due to prostate related treatments. 

The first time was 6 years ago after my original prostate surgery. I was catheterized for 3 weeks due to swelling, but after that subsided I learned how to do Kegel exercises and regained continence on my own. I don't remember how long it took. I continued to have a strong urge to pee but at least I wasn't leaking. I used the med Oxybutynin for quite a while but I gradually learned when and where not to drink lots of liquids, and only used Oxybutynin when we were on trips. 

The second time was January of 2017. I had a procedure called a cystoscopy (no fun) where they stick a tube up your penis to have a look at your bladder. You're awake and it is rather unpleasant. That night I couldn't pee on my own so we went to the emergency room and they catheterized me; I had the catheter in for a week, during which I had a UTI.  

We left for a month in South Carolina shortly after and I was incontinent while we were down there. I thought I could regain continence on my own but I was leaking the whole time we were in S.C. (no fun!). When we got back I found out that there is physical therapy for incontinence; by the time I started it was April, and continued it until June. I think it took long because: 1) I was 6 years older 2) I had the UTI complication. 

The third time was after my spine surgery on July 25th. The entire month of August was spent getting a catheter put in, having spasms where I couldn't pee, and going to the ER to get catheterized again. I got another UTI. At one point my pee looked like coca cola. After three trips to the ER, the catheter was finally removed. They taught me to self catheterize just in case. 

While I was healing from the surgery, my surgeon just wanted me to walk. I did the Kegels on my own. He finally agreed (at my prodding) to physical therapy for my back which helped my back a lot. I continued the Kegels. Finally I started PT for incontinence again in November. That was four months after my surgery, but I am counting three months since they stopped having to catheterize me.

My original therapist, a woman, retired. My new therapist is a guy. I liked/like them both. I was a little concerned that because of my spinal surgery, PT may not work as well now. My new therapist says that if you can control the defecation muscles, you can train the muscles that control urination. 

He also says that continence is regained in the following order: 1) sleeping, 2) sitting 3) standing 4) walking 5) lifting. I'm getting closer to controlling sleeping and sitting. I'm hoping that these will be in good shape by the time we leave for S.C in late January. I'll continue to work on it while we're in SC and most likely get another course of physical therapy in March. Hopefully I'll be squared away by spring!

XTandi, continued



The list of side effects from Xtandi keeps growing. 

My sense of smell and taste has been affected. My oncologist verified this and had a term for a change in tastes due to cancer meds. 

I used to like Dunkin' Donuts Coffee. I tried it in a couple of locations and it all tastes the same - blah! I tried Starbuck's and it tastes funny too. I guess I'll be a tea drinker for the time being (I couldn't tell you what good tea tastes like). 

I also have these periods of fatigue that seem to come and go. Sometimes I'll take a nap, sometimes I don't have time and that fatigue goes away. My oncologist calls it a "cancer fog".  

I am also on Lupron and that gave me hot flashes but I didn't notice any worsening of this side effect. In fact it seem to have subsided a bit. 

The latest side effect is very odd. If I sit for a while and then try to get up, I get a pain in my thigh (about a five on a scale of one to ten) and a feeling of weakness in that leg. If I walk around a bit the pain and sense of weakness goes away. This has been going on for about a week.  

This is kind of disheartening because my back stiffness, thigh numbness, and incontinence all seem to be improving (though slowly) and then I get another physical ailment. I was a little bummed out yesterday but I'm back on the optimism horse again today. I realize that some people have it so much worse. Plus as with the hot flashes, maybe this pain will be short lived.  

If I'm lucky, I'll be on Xtandi for 2 to 4 years before it stops working. Then it'll be on to another drug? I'm hoping that they'll have immunotherapy working for prostate cancer by then.