Working with the psychologist over the past eight months, I came to an understanding of what acceptance means and a partial understanding of how to get there – at least for me. I’m going to provide a very quick unveiling of my understanding of what acceptance means and a much slower unveiling of my understanding of how to get there.
For me, what acceptance of cancer means is best answered by how I want to live when I achieve acceptance. I want to live my life with an awareness of having cancer, that I show by taking into account unavoidable limitations it imposes on me, but not allowing cancer to dictate anything beyond that. Another way I think of it is I want to be at peace with the fact that who I am, now and forever, includes an unwelcome partner, cancer. I want to own my cancer. (One of the poems my psychologist gave me helped enormously in coming to this understanding, along with all the time we spent talking, of course. I posted it some time ago here. I also want to acknowledge Zen Greenway for posts and comments that helped focus my thinking.)
Now we move to my understanding of how to get there. Months ago I was told I had Stage IV incurable prostate cancer. I started thinking about how I was going to approach having incurable cancer; how I would “think” about it. The last two people I knew who died of cancer approached it the same way – massive denial. This is not the kind of denial where one refuses to believe one has cancer despite the test results. (Knot Telling has a great blog entry about this kind of early denial here.) I think many terminal illness patients experience that kind of denial when first told they have cancer, and it usually succumbs before long to the hard facts. The kind of massive denial I’m talking about is an inability to respond to the fact that the disease will likely end their life prematurely and they will die. They are able to go to doctors and get treatment, but refuse to confront the implications of their accelerated death. Wills and medical directives aren’t drawn up, and if brought up, spark hostile responses. Even creating lists of passwords or bank accounts for the folks who will be left behind is out of the question. They fill their to-do lists with outrageous amounts of tasks with near impossible deadlines to keep their mind distracted and provide an excuse to avoid anything related to their death. When they die, their families are left in a lurch from the lack of planning. This was not a path I wanted to take.
Another path, that beckoned to me briefly, was to slip into deep depression, anger, and resentment – probably supplemented by alcohol and drugs. I guess it’s another form of denial. I’ve never known anyone who did this, but I’m sure it happens. I decided against this path as well.
The only path that seemed left was acceptance. It sounded better than the other choices, but the truth is I didn’t really know what it meant or how to achieve it. “Going with the flow,” “Bending with the wind,” and similar statements felt right, but didn’t really provide any specific direction.
The one thing I did know was I had a lot of very intense feelings that needed to be addressed soon. My cancer was taking over my life by controlling my emotions, and I felt powerless to stop it. I wanted to regain control as fast as possible. I decided that figuring out this acceptance thing could wait. Getting help from a psychologist for the current problem seemed the best approach. I asked my oncologist if he knew of any psychologists who worked with cancer patients. He referred me to someone who specialized in terminal illnesses and gerontology.
Even though I didn’t realize it at the time, addressing all those intense feelings was the first step in acceptance. A big part of cancer’s power lies in its ability to generate feelings of fear in its victims. Fear of dying, death, what comes after, not leaving the family in a lurch, a spouse leaving, friends leaving, pain, treatments, chemo, nausea, weight loss, hair loss, depression, losing one’s job, insufficient insurance, insufficient money, becoming a burden, etc. Add to this list the fears that are prostate cancer specific – loss of sexual identity, loss of libido, growing breasts, menopausal symptoms, etc. I was fortunate in that I wasn’t afraid of all of these, but I did fear most of them. Restating a great blog entry by Bill Curry said it all for me – “Prick a cancer patient, and they bleed bright red fear.”
I suspected the fastest way for me to diffuse the fears was to talk about them, starting with the ones that were the strongest. So, for about a month and a half, maybe two months, I went in to my psychologist, said hello, asked how he was doing, and launched into what scared or upset me the most. Within a couple of minutes I’d be sobbing, then recover, more discussion, more sobbing until an hour and half passed. My belief was that if I wasn’t upset, I wasn’t addressing anything that really had power over me. It was absolutely my goal to be sobbing, recovering, and reflecting over and over again in every session. My cancer helped me succeed beyond my wildest dreams. From time to time I’d side-track the conversation. I’d start talking about how unfair this all was or ask what I had done to deserve this. In my heart I knew it was all just the luck of the draw and that these forays just wasted time; time I needed to spend on more emotionally charged issues. I’d jump back into the most emotional issues as soon as I realized what I was doing.
Not all the fears were highly charged, but I knew some of these had to be dealt with as well. The best example was the fear of leaving my wife in a lurch. Talking it over to diffuse the emotions didn’t make sense. Better to simply take action to ensure it didn’t happen and thereby remove it as a fear. Because the psychologist specialized in terminal illnesses and gerontology, he had lots of experience in this area. We spent a couple sessions working through what was needed and he also provided feedback for what I created. Eventually my wife and I had wills, medical directives, an informal medical directive “guidance sheet”, financial plans, and a variety of lists/checklists for after I die. Another fear was resolved.
I chose to not address every single fear I had – right then. It seemed a waste of time to address fears that were associated with things likely in the distant future. Distant future being more than a year or so away. This was things like fear of chemo, bone pain, the dying process, and dying. Advances in medicine could very well substantially change what specifically I should fear, if anything. For example, a chemo regimen with minimal side effects for prostate cancer might be developed, removing the fear of chemo for me. I committed to myself and out loud to the psychologist that I would work through these fears as needed, but was going to put them on hold for the moment. Much to my delight, the “fears” seemed OK with this and have barely bothered me since then.
The upshot is that for the last couple of months I have never been completely overwhelmed by fear and it’s required no effort from me to hold it in check. I feel sad from time to time, but that seems appropriate. I occasionally cry, which also seems appropriate, but the fears never leave me sobbing.
Some of you may be thinking that the blog’s had a lot of negative stuff over the last couple of months. It seems a contradiction. The problem has been and continues to be my depression. When the depression is controlled, I do great. I really mean that. When the depression is controlled, I do great. Right now, this usually happens twice a day, when the first and then second dose of adderall hit peak effectiveness. I also usually “get” to experience moderately severe depression twice a day, when the adderall wears off. That’s where most of the negative stuff comes from that you’ve seen over the last couple of months.
(As an aside to this post’s main topic, I’ve decided the adderall is probably a bust. This coming Friday I meet with the psychiatrist and try to come up with another plan.)
After resolving so much fear and emotion, I hoped I was done, except for dealing with the depression (and keeping up my promise to address future fears as appropriate). I put the sessions with my psychologist mostly on hold and only occasionally met with him, mostly to talk about depression. With a clearer head, though, I now see there was another 500 lb. gorilla in the room, who had been there from the beginning. In fact, I brought him to the first visit. We’d talked about him in several sessions, but nothing was ever resolved.
It is obvious to me that dealing with him is the next step. I am not happy with this turn of events.