Monday, Feb 26, 2018
Going away from home for a while. 

For some odd reason I thought that this year's winter Myrtle Beach would be different - that being in a warmer climate would somehow make me feel better and some of the things I've been working on would magically be cured.

Here are some improvements that I noticed while at  Myrtle Beach: 

Incontinence - while I continue to do Kegels religiously, and my leaking is better, I still have months to go before this issue is fully resolved. I have several nights where I only have to get up twice a night to pee (this may be the best I'll ever do). But every once in a while I'll be up three or more times. Luckily I can practically sleep walk to the bathroom, do my business, and crawl back into bed and fall right asleep. On those few nights that I get up a lot or can't fall asleep, a nap is in order the next day.

 I have noticed a few things: I used to "pee freely" in the morning and in the evening/at night. During the middle of the day I just leaked into the pads. But now I'm peeing pretty much around the clock, and the pads are not as full as they used be, but I change them quite frequently because I can't sitting around in my own pee - I worry about odor.  

Another thing that's kind of odd is that the "urge" to pee has slowly returned. Initially after surgery it was more of a guessing game. I guess when nerves are involved there is some healing there as well.

As far as my back, I walked on the beach a few times a week, and I did strengthening exercises a few times a week. I tried to do my stretches every day, followed up with some time in the hot tub. There were times when my back felt great, and other times when it was tight as hell. When my doctor says it will take a year to two years to fully heal, I now believe him. It's been seven months - I just have to continue to do the work. There are no shortcuts.

I think I noticed a change from taking XTANDI - loss of muscle mass. I looked in the mirror the other day and my arms and legs looked skinnier. I will need to do some weight lifting when I get back home but I may need some help from my physical therapist about what exercises to avoid. I don't think I need to lift very heavy weights to counteract the hormone's effect on muscle mass.

We have still done and seen a lot of fun stuff at Myrtle Beach this year.  I hope that if/when we come back down next year that I am not as limited physically so I can walk faster and dance the Shag!

When we get back home in early March I'll find out my latest PSA scores - this will tell us if I stay on Xtandi or have to switch hormones. 

Friday, Jan 26, 2018

Thoughts on incontinence.

As I mentioned in an earlier post, I experienced my third bout of incontinence in 2017, after spine surgery and having a catheter in and out for the month of August.

After surgery my first efforts at recovery involved a lot of walking. After a while (it seemed like forever to me) my surgeon agreed to physical therapy for my back, which was very stiff. When that was completed my back felt much better and I then concentrated on incontinence.

I started physical therapy for incontinence in late November and while I am still not 100% continent, I am much improved.

2018 will be a year where I continued to work on my back and my bladder. I will continue to walk, do stretching and strengthening exercises, and do my Kegels as instructed by my therapist.

I'm not a patient person by nature. My surgeon says my back won't be fully healed for another year and a half. My urology therapist says it will be months before I'm fully continent. The important thing is to keep at it - what other choice do I have?

January 26, 2018

Thoughts on XTANDI.

I started taking XTANDI (Enzalutamide) in late August. When I first met with my oncologist after taking XTANDI, I was claiming that I didn't notice any side effects. But shortly after that, I experienced hot flashes again (they had stopped after having Lupron injections for a while). I then started  having bouts of fatigue where I was napping for two or three hours a day. Then my sense of taste was affected - most noticeably Dunkin Donuts Coffee tasted really bad - so much so that I couldn't drink it. But all of these side effects ended or greatly reduced after a while.

The fourth side effect I noticed was a pain in my upper thigh, close to my hip. It really hurt when I got up after sitting for a while, and would ease off after I loosened up. Common sense
told me it was muscular, and my oncologist verified that it sounded like a side effect of XTANDI, but deep down I was worried about a reoccurrence of cancer.

I asked my oncologist the leg pain could go away - just as the other side effects had. This was on a Monday (he said yes). By Wednesday morning the pain had disappeared (after a month). So I guess I need to be patient if I experience more XTANDI.side effects. I also need to talk to my doctors and/or nurses when I notice some weird symptoms rather than assume that my cancer is back.