Was He Always Like This?

Sometimes I wonder what folks who follow this blog wonder about me. One question stands out in my mind, especially among the folks who have known me for decades. Did I always have this much trouble with depression and anxiety? Did I just do a great job of hiding it? The short answer is no.

I’ve had problems with depression and anxiety on a limited basis throughout my life, but for most of my life it wasn’t particularly serious. In fact, it wasn’t until I was in my mid-forties when I first started taking antidepressants and even then I was on and off them.

In 2008, right around the time I was first diagnosed with phase I cancer, my depressions got worse – no big surprise.

In late 2008/early 2009 I had brachytherapy and conformal external beam radiation to kill my prostate and my cancer. I was given an 80% chance of being cancer free at the five year mark, which would be early 2014. Cancer free doesn’t mean you’re cured, it just means there’s no detectable sign of the cancer at a given point in time. In other words you’re going to be tested for the rest of your life. For prostate cancer that meant PSA tests about every six months. I decided I was going to bull through it and everything would be OK. The depressions had little to do with the cancer as far as I was concerned.

Reality was telling a different story. Before long I was officially declared “treatment resistant”, meaning I didn’t respond well to single or multiple anti-depressant cocktails.

About a week before each test my anxiety would start gradually increasing to a crescendo before the test results came back. It became very clear that the disease, which I supposedly, probably defeated, was in fact seriously messing with my quality of life every six months. I thought about ending the testing and letting nature take its course. The doctors talked me out of it. I know now that was a mistake, I should have stopped getting tested, but I can’t change it at this point.

In late 2011 my PSA reading was slightly elevated, we did a bone scan, found some spots on my spine, and that graduated me to a phase IV cancer diagnosis. The only good news is we caught it super early. Even so there’s no hope for remission. All that can be done for prostate cancer is to slow it down. Depression and anxiety-wise I was very lucky that I was just about to start on a new anti-depressant cocktail that worked very well for a month or so. I definitely needed the help.

In January 2012, although I didn’t know it at the time, I was about to make the biggest mistake of my life. The doctors were split on whether I should take an aggressive route and irradiate the spots or follow the standard of care and wait for it to get worse. I was told that if I irradiated, the worst side effect would be mild fatigue. So I decided to go ahead with the radiation. They were terribly wrong, and as I mentioned in the last post, it wound up being a horrible error. If you look carefully at my posts over time, the worst depressions started after February.

And that’s the long answer.

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Looking Back and Forward

My year in review. I saw lots of cool places. Took lots of photos. Had many good times with my wife and friends. On balance, though, it was a horrible year. The worst of my life.

At the heart of it was my misguided decision to get elective radiation treatment in Jan-Feb. The procedure and after effects produced levels of pain and depression I didn’t think possible. Something inside me snapped, and I’ve been working ever since to get back to where I was. I’ve had brief periods where it appeared I made it, only to have drugs fail.

Right now I’m doing fairly well and only taking one psychotropic drug, which is very encouraging. It also appears I finally kicked the flu I caught about 3 weeks ago. But I’ve been off the Casodex for a month and half, maybe longer. I need to restart it soon, probably in a week or so. We’ll see what happens when its side effects kick in. To be honest, I’m expecting Casodex to significantly upset the apple cart. It’s effects are powerful while my current state is fragile. I don’t really have much choice. If I stay off Casodex, my life is significantly shortened. Delightful.

That all said, I’m hopeful this year will be significantly better than last year. It’s pretty unlikely that cancer will kill me this year. I also have a reasonable chance of remaining asymptomatic. Of course I’ll still have to deal with Casodex and depression, but maybe that can be done. I’m going to find out, that’s for sure.

Prostate vs. Other Cancers

As you know from my acceptance post, I’ve largely come to terms with my fears about cancer. That’s allowed me to start reading a number of other blogs from people who have cancer. There are some striking differences when one compares prostate cancer to most other cancers, especially stage IV cancer.

As I understand it, most cancers love to eat sugar. Prostate cancer loves to eat testosterone. Drugs like lupron and casodex either stop the production of testosterone or make it “indigestible” to prostate cancer. As soon as you’re diagnosed with stage IV prostate cancer, you’re almost guaranteed to go on one of these drugs.

When prostate cancer metastasizes and becomes stage IV, it often picks bones to infect with the spine being a common choice. The current standard of care, according to my oncologist, is to leave the cancer untreated until bone pain starts. At that time, radiation is used. (I decided to aggressively treat the spots that appeared on my spine and had radiation before bone pain started.) Surgery isn’t a viable option. That’s why you rarely hear of someone recently diagnosed with stage IV prostate cancer is headed to surgery.

Hormonal drugs do a very good job, at least initially, of removing prostate cancer’s food source. The cancer’s growth is greatly slowed. Eventually, prostate cancer cells develop the ability to make their own testosterone. On average this takes about two years. If the prostate cancer is detected before it’s symptomatic, taking lupron or casodex may provide a significant asymptomatic period of time. One must still live with the side effects from hormonal drugs, obviously. (This is precisely where I am right now. I’ve been on casodex or lupron for about 9 months.) When these hormonal drugs fail, there’s now another drug to use, zytiga. It suppresses testosterone from the testes, the adrenal gland, and the prostate cancer! It appears to significantly extend survival, perhaps by as much as 18 months. It’s awaiting FDA approval as I write this. It’s horribly expensive. After zytiga fails, chemotherapy is the final choice. The point of all of this is that, unlike other stage IV cancers, chemotherapy may not start until years after the diagnosis. This is the good news part of stage IV prostate cancer. If caught early, you have a fair amount of time to get your affairs in order. It also leads to some awkward situations. When folks, who know I’ve had stage IV cancer for 10 months and haven’t seen me since the diagnosis, finally do see me for the first time, they’re shocked. I have all my hair, I’m still at a good weight, and I look perfectly healthy. Most assume there was either a big mistake in the diagnosis or I’m in some sort of miracle remission.

Finally, there’s the difference that has to do with chemotherapy. In most cancers there’s a hope that chemotherapy will produce remission. That’s not the case with prostate cancer. Remissions are very rare. My oncologist tells me that chemo can extend life on average about 1 year more or less and then it’s over. With many other cancers, enduring chemo is made easier by the hope of getting the gold ring of remission. With prostate cancer your life is extended, but you’re under chemo’s thumb for all of that extended life. That’s why  prostate cancer patients may decide to forgo chemo. (I’ll probably try it, but expect to opt out.) Hopefully, medical advances will provide drugs that can either produce remission or at least reduce side effects.

Surprises

There seems to be no end to the surprises after the big one, when I found out the cancer had metastasized after two years. Never mind that I supposedly had an 80% chance of being cancer free at five years. Next up was the radiation treatments that were supposed to produce no side effects except minor fatigue. I wound up having to cut them short, and it took months to recover from the damage. Then our dog was diagnosed with cancer, had surgery, was pronounced cancer free, and cancer killed her a month later. My mother-in-law died about the same time. I started taking casodex to slow the growth of my cancer and experienced the expected side effects of loss of libido, hot flashes, irritability, and depression. Lucky me, I also developed extremely tender breasts, something that happens only 30% of the time I’m told. Not too long after that, we were informed our other dog has digestive problems and will likely die before the end of the year.

The most recent surprise was just last Saturday morning. When I got up, I noticed something slightly rubbing against the inside of my arms. It was my breasts. One of casodex’s other low incidence side effects is breast enlargement. I luck out again and get the low probability outcome. At this point the growth isn’t noticeable to anyone but me, but I have to assume the grow will continue. They won’t shrink back  if I go off casodex. If I stay on it and they do continue to grow, surgery is the only option. In other words, having prostate cancer and staying on casodex may lead me essentially to a double mastectomy. Now that’s ironic.

This last surprise has been one too many for me. Words can’t express how broken and depressed I feel. Any sexual identity I had feels like it’s fast slipping away. But I’m still totally asymptomatic, i.e., no bone pain. This is the good part of the rest of my life?! I can hardly wait for the bad part to start! The last nine months has been a near constant stream of bad news and death. My luck appears totally shot. A big part of me just wants to stop taking any of the meds, except painkillers, and let nature take its course. I’m not going to do that, though.

I’m hoping that first thing next week I’ll get in to see the oncologist and maybe move back to lupron, which has a much lower incidence of breast pain and enlargement issues. I’m also going to move up my regular appointment with the shrink to address the deep depression this has caused. When the adderall is working I’m OK, but when it wears off it’s not pretty. We’ll no doubt change my anti-depressant cocktail. That will take weeks to assess, and if it doesn’t work, we go at it again. I’ve tried enough different cocktails already that I have very little hope we’ll find one that works long term. There’s a new genetic test that supposedly helps identify which drugs are most likely to work – I’ll ask him about that. I’ll probably try TMS in parallel with all of this (it’s described in earlier posts). If neither of these work, I don’t know what I’ll do. Guess I’ll cross that bridge if and when I have to.

D-Day

Met with the oncologist today. After extensive questioning he agreed it was time to return to Casodex.

Went home. Took the pill. No thunder clap, no lightning, no alien bursting out of my chest. In fact I feel much better. The decision has been made, I’m on the Casodex track. So far, so good. I really feel enough time has elapsed since the radiation therapy that I’ll be OK.

Had a great dinner with my wife tonight. Afterwards, I stopped at the local liquor store to get some beer and wine. The first time in months for me. I like one of the clerks who works there and he was there tonight. We talked about how long it’s been since I stopped by. I told him about the cancer. He hopefully asked if it was cured and I said no. He then asked if it was incurable and I said yes. The look of despair on his face was so overwhelming. Here’s someone I really don’t know at all, feeling those feelings for me. It was very special. I told him I still planned to have a good life and he brightened up. And I do.