What are the thoughts and feelings of people undergoing long-term, continual treatment for advanced cancer? During nearly ten years of continual treatment for metastatic castration-resistant prostate cancer (mCRPC) my wife and I feel we have been riding an emotional roller coaster. There have been several times, when we realized that yet another treatment regimen was failing to control my cancer, that I would begin once more to feel alone in my battle with this disease. Early on I learned to be patient until our next semi-annual visit with the chief, for he has never failed to have a new plan. We leave his office excited about a new treatment regimen that we fervently hope will succeed where the others have failed. And so it has gone these ten years with steady declines in my physical strength and resilience, mental capacity, emotional reserve.
I sense that the sword of Damocles follows me around as though attached to the venerable “skyhook.” I can barely imagine what it might feel like to be free of treatment – to be free to plan, to go and do! Will this journey end before I run out of the strength to cope? We are always hoping that the next new drug will have a major impact on the cancer – enough so that we might plan a trip or special event. We have only a rough idea what we might be able to do a couple of months from now. Will there be time between the clinic visits for treatments? Will I be strong enough to participate?
I feel I live my life mostly on the fringes or in the shadows. I am fortunate to have little pain and no outwardly obvious symptoms. People say, “you are looking good!” And, I am indeed. It took me several years to learn to appreciate that compliment. What else could I expect others to say? So, while I “look” like the others in a group of friends, I know they are free to plan, to go and do things that I still long to do but know that, at least for now, I am not physically or emotional able. Another friend who has battled PCa longer than I copes with that situation by saying, “It’s time to define a new normal.” When the people in the group take off merrily on their activities, I have learned to hang back in the shadows and hope that no one notices I have disappeared – another new normal.
I find myself taking a low profile, avoiding confrontations of any kind, and backing away from engaging in a substantive conversation. Once upon a time, I was a gregarious, assertive person. Now, I find myself hanging back, simply listening to others and seldom entering in. Thanks to some insights from friends also on hormone-deprivation therapy, I now think the cause of this particular behavior may be my complete lack of testosterone. The positive side of this is that I sometimes manage to ask more questions before I sit back to listen to others.
My attention span is short. Once upon a time I relished the idea of an evening with a group of friends – the number of people and wee hours didn’t matter. Now, I’m comfortable with a few folks for a few hours – that’s it. Such functions, no matter how pleasant the company and the conversation, seem to take a lot out of me. I suspect this is a consequence of long term chemotherapy.
Nevertheless, I rejoice at still being alive. Despite the physical and mental toll of all my treatments in the past 10 years, I judge the cost/benefit ratio in my favor. We have traveled abroad two times since my diagnosis in 2004. We manage to spend our winters in California and our summers in northern Michigan, thanks to physicians in both those places who will pick up and continue my treatment schedule. Medical science continues to make rapid advances in the treatment of serious cancer. If I had been diagnosed 5 or 10 years earlier, I am certain the treatments available then would have been quickly overwhelmed by my particularly aggressive form(s) of cancer. As a consequence, medical science has become very good at putting garden variety forms of many cancers into dormancy.