Mixed News

I’m a little late with this news.

I find that when I’m feeling particularly good or bad, it’s easy to compose posts. Otherwise, it’s often hard to generate the energy to write something. Monday and Tuesday provided mixed news and the rest of the week provided little motivation to write. It’s either a sense of guilt or a desire for completeness that drove me to finally write this post. My apologies.

On Monday I saw the oncologist for our bi-monthly meeting. I gave him a copy of my medical directive info, including an addendum that describes in more detail when I want a Do Not Resuscitate, or DNR, applied. Apparently, I want a DNR applied earlier than most, as he commented I seemed very pessimistic. I have to admit I was surprised. When it’s clear the end is near and no more than pain/heavy sedation is in my future, a DNR makes sense to me.

We then started talking about bone pain and when I might likely start to experience it. He said it can’t be predicted, but the good news is it might not happen at all. This was much appreciated – I’ll keep hoping I remain bone pain free.

I told him another of the potential side effects of Casodex had surfaced, very tender breasts. Any moderate pressure on my breasts produces a sharp pain. About 30% of the men who take Caosdex experience this and/or breast enlargement. (So far I haven’t had any enlargement issues.) I asked if there was anything we could do to reduce the side effect, which right now is yet another inconvenience, but tolerable. The short answer was no. The longer answer was it might get much worse, so that it’s intolerable, and then surgery is the only generally accepted option, but the surgery might not fix the problem. Great. A hot flash hit me right when he said “surgery” and then built until he finished with “might not fix the problem”. The prospect of this growing into intolerable, incurable pain scares the hell out of me.

My distress must have been very obvious, because after that he became more positive about my future than he’s ever been. Suddenly, he was hopeful that the Casodex might continue to work for 50 or even 100% longer than on average. I felt better at the time, but later realized there were no tests or any other new data since the last visit to warrant any change in opinion. It was nice he noticed and reached out, though.

We briefly discussed Zytiga, an existing prostate cancer drug now being used earlier in treatment than originally proposed. It sounds as if I would go on it after Casodex fails and before chemo. Preliminary results show up to an 18 month life extension. Very good news.

On Tuesday I called to get the results of my latest PSA test – 0.45. Good news, the Casodex continues to work.

A couple hours later my wife returned from the vet. It turns out our one remaining french bulldog, Julia, is having trouble absorbing proteins from her food. She’s an old girl, and the bottom line is we’ll be lucky if she makes it through the end of the year. At least she’s alert, eats well, is happy, and not in pain. Still, it hurts my heart.

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Jet Lag and MSNBC

I’ve been back in the States since Sunday and it’s been quite a ride. The Westward bound jet lag produced the same depression problems as the Eastward bound lag. Tuesday was especially bad. It wasn’t just the jet lag this time, though. Monday afternoon I read an MSNBC.com article on the ongoing controversy over PSA tests to detect early prostate cancer. Normally, this would be no big deal. I’m so far past the early detection phase. But the article had a one line entry stating the average survival rates for advanced prostate cancer patients (like me) is from one year to two and a half years after diagnosis. That would be about 22 months left for me, best case on average. It hit me like a ton of bricks. I know there’s a reasonable case to be made that my average survival rate should be at least a year and a half more than that, but 22 months is also well within the realm of possibility. Seeing it in print made it feel so real and inviolate. I felt my prior 3-5 year estimate suddenly get cut in half. I was overwhelmed by fear.

I’m still totally asymptomatic. It seems impossible that I could die so quickly. But of course that’s the way it is. Once the cancer reaches critical mass, it spreads and grows like wildfire, until it kills its host. When the Casodex stops working, my cancer is one huge step closer to critical mass. For me that should occur, on average, in 16 months. When that happens we see what treatments are available at the time. The current standard of care is to go onto chemotherapy. In practical terms that would mean my quality of life and choices degrade significantly for the rest of my life, probably 3-12 months.

Prior to reading that article, I did a good job of not thinking about how much time I have left and how much would be “good” time. The article, combined with the jet lag and loss of sleep, shot that to hell.

Monday night we went out to dinner with friends and I was mostly able to set it aside.

Tuesday morning I was hit with depression from the article and a Casodex induced depression at the same time. A fatal heart attack would have been welcome. I was supposed to pick up a fabulous new car I ordered months ago (that had just been delivered to the dealership), but I couldn’t have cared less. I stayed in bed for five hours until the Adderall finally got me to the point I could get up. I did pick up the car, but missed out on most of the joy and excitement, due to the lingering effects of the depressions. We didn’t even take it out for a ride after we got home. It’s hard to believe depression can have so much power.

On average, today has been better than Tuesday, but it’s been a roller coaster. At least the lows haven’t been near as bad. I did have some fun in the car today. Just hope the worst of this is over.

DNR

Last week my mother-in-law broke her ankle. While at the hospital she went into full cardiac arrest and was dead for nine minutes. They did manage to revive her. Unfortunately, her medical directives weren’t with her. Their instructions were DNR.

So for the last four days she’s varied between being completely drugged out or suffering. Last night she thankfully passed away.

It’s a stark reminder that having medical directives isn’t enough. The hospital and ER staff need them when you go in. Or better yet have them put in your file at your local hospital. Be sure your primary care physician has a copy as well.