Six weeks has passed since my last lupron shot. As you recall, usually the first week is benign; weeks 2-4 somewhat troublesome with anxiety and low level depression; and weeks 5 and 6 full of heavy depression. This go round, weeks 5 and 6 were considerably different. Only one day was particularly bad. That’s great news, but I wish I knew why it happened that way, so I could replicate it. Really, it’s very unsettling to never know if I’ve found a solution or not. Part of me says take the good things you get and just be happy. The truth is the days of heavy depression are terrible. I just want to find something so there are none of them. Is it diet, counseling, self talk, adapting to the lupron, the new 10 week overall schedule, or just random results. I’ll probably never know.
I feel as if I’m doing a better job handling my likely very premature death. For some reason just knowing I’ll die eventually under any circumstance helps. That my death will probably be more than two decades before natural causes would take me isn’t so disturbing, because of all the people I’ve seen turn into barely living shells. Mostly dead, but still hanging on with little or no purpose or awareness. I tell myself that at least my death will probably be orderly and controlled. The Hospice types assure me I’ll die painlessly if that’s what I want. What I’ll give up is awareness and being “present”. At least right now, I think I want to die painlessly, even if it is in a fog. Who knows, though, I might decide that having some awareness to say goodbye is worth some pain. Fortunately, these are not decisions I need to make now.
This may all seem a bit premature. Lupron is still working, side effects and all. I have no bone pain, and the cancer hasn’t metastasized beyond my bones to a vital organ. But my experience with others who had cancer is that things can change very rapidly, and once the cancer gets going, things are over fairly quickly. I feel I need to spend some time, not much right now, thinking about the decisions I’ll face. I want to be at least marginally prepared to respond before I’m overtaken by the disease.
Enough unpleasantness, I’m entering into the last 4 weeks of the 10 week cycle of lupron injections. They’re generally pleasant, so I’m hoping for some good times.
I should have seen it coming. After realizing that I’ll almost certainly go off Lupron early, the other shoe didn’t drop until this morning. It finally occurred to me that what this means is I will die sooner. The thought just freaked me out and made my death come into sharp focus.
All of the morning and most of the afternoon were spent trying to get my arms around this. I finally came to the conclusion that my current life on Lupron is such a low quality of life that it’s better to forgo the extra months alive and switch to something where I can enjoy my time left.
I’m actually doing pretty good right now Had a reasonable dinner and am comfortable with exploring other options. I meet with the oncologist Tuesday the 10th and we’ll see what develops.
About five and a half weeks ago I got my most recent lupron shot. I expected only mild side effects the first 4 weeks. Instead I had major nausea and upset stomach issues on and off during the entire period. Many dinners were limited to mashed potatoes. The fifth week saw my stomach issues clear up and I had only 1 moderate depression.
The sixth week has been a disaster so far. I missed thanksgiving dinner due to stomach problems that carried over into the next day. Yesterday was one the worst days of my life. Crippling depression set in along with serious nausea. Lupron also left my arms with a fierce tingling for hours. On top of all that I had a chest cold and sore throat. I managed to get through the day, but I feel like something snapped. Today was better, but still very rough. I’m trying to get an appointment set up with oncologist to explore other choices. These side effects are so significantly degrading my quality of life, I’ve got to check out the options.
The Lupron side effects have finally stopped – at least until the next shot. I have to move up the next shot to time it with a cruise we’ll be taking, so this go round I’m only going to get about 5 Lupron-free weeks. Regardless, they’re wonderful. I almost feel like I did over a year and a half ago, before the Stage IV diagnosis.
The other day I was talking with some friends about future technology advances and one of them said a particular advance would probably occur in his lifetime. It hit me that his lifetime is likely to be 30-40 years more, but for me it’s 3-7 years. I love technology and am an avid gadget collector. One of things that’s hard is knowing I’m going to miss out on all kinds of cool inventions. Part of the reason it’s hard is my life has always been very future oriented, living in the future tense.
Being future oriented provided lots of good things when I was in the workforce. Someone who automatically considers the future effects of decisions and can take steps to help ensure the “best” outcome occurs has a highly valued set of behaviors in corporate America. This future planning bent also helped ensure my retirement nest egg was well funded.
Unfortunately, a reliance on long term planning skills to get through life fails miserably when one has only a relatively short time to live. Looking over the various blogs I follow, it’s clear the folks in my situation who are the most focussed on the present tense are the happiest. The shrinks tell me that’s the case as well.
When I was first diagnosed with Stage IV cancer, I thought I’d just plan my way through it. Turns out that cancer can unfold in many, many different ways as the disease progresses. It’s not at all like dealing with customers or corporate hierarchies. It’s far more complex. So I have to try to just accept what is and be OK with whatever happens.
This continues to be very hard for me. I desperately want to take control and plan my way out, but that can’t happen. I am making progress on living in the present, but it’s slow. I sure wish there was a class for it.
One of the things I neglected to include in the last post about my visit to the oncologist was we decided to get another bone and CAT scan in late Feb. I guess I forgot to mention it, because I didn’t want to think about it. I wasn’t very happy about he prospect. We know my PSA is up, we know I irradiated the previous spots on my spine, we know it’s very unlikely the cancer will return to the area that was irradiated, and we know that we won’t treat more bone metastases until they cause pain (and I’m not in pain). So what’s the point? I guess it’s just to confirm where it’s metastasized to. Probably good to know if it isn’t on another bone. Still there’s a huge part of me that wants to say screw it, no more scans until I’m in pain. Denial is such a sweet sounding siren.
The hospital called the next day to set up the scans, the day after I uploaded my last post. That was two days ago. After the call I had a full blown anxiety attack. I managed to get through it thanks to my wife. She suggested we set up another appointment with the oncologist (that I had just met with the day before) to go over again the need for these scans, which we did. That night I had yet another anxiety attack. A couple Xanax came to the rescue.
After thinking about it I decided I wanted to go ahead with the scans, but I wasn’t sure what state I’d be in. A major anxiety attack right before or during a scan is no good. So I got a last minute appointment with the TMS psychiatrist today.
We added a new drug to the cocktail. If I’m doing OK by Monday, I’m going to cancel the follow-up meeting with the oncologist and go for the scans.
I realized tonight that I’ve taken another step in the process. I can no longer deny this stuff is spreading and killing me. I don’t think I’m even close to fully accepting this, but I’m one step closer.
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.
It’s my second birthday and Christmas since I was diagnosed with stage IV prostate cancer. Pretty soon it will be the second New Year too.
Last year I wasn’t sure if I’d see any of the holidays this year. We hadn’t established how aggressive my cancer was at that point. Now we’re pretty sure it’s not particularly aggressive, so it appears I’ll likely see a few more Christmas holiday seasons. Exactly how many no one knows.
I do know I haven’t yet come to terms with my cancer, which really means my death. How? When I think about this birthday, Christmas, and New Year, there’s no feeling of being grateful to be able to experience it. Finding happiness, contentment, or peace seeing these milestones come and go is hard. Instead I find myself fighting back feelings of being a marked man wondering when the other shoe will drop – the time when I know my last birthday, Christmas, and New Year are upon me. Then I get concerned about not staying positive enough, that my negative feelings are going to hasten my demise. Fortunately, I’m able to regain control pretty easily, but it’s still unsettling and a clear indicator to me that I have a lot of work to do with this acceptance thing.
There are no surefire ways to get there and that worries me. I guess I’ll just keep pushing and see what happens.