This post is sixth in a series of seven. To read from the beginning click here.
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Part Three: Uncertainty Becomes Certainty
My biopsy was performed several weeks after the previous tests had suggested its advisability. The results came back and the diagnosis was made. The pathologist’s report showed I did have prostate cancer. I had it for some unknown period of time, even as my test results had been slowly rising for several years. I had cancer six months before my biopsy, when the screening test first showed a significant doubling in the PSA reading. And I still had cancer after the biopsy. But finally I knew for certain cancer was in my body, a reality to be acknowledged and dealt with.
Obviously writing about my cancer in this blog will make more people aware of my situation. However, at the time of my diagnosis the results were only known to my close family members and the medical professionals I had been seeing. I knew more people would become aware of my new circumstances and I did not look forward to some potentially difficult conversations. People often don’t know how to react when someone says, “I have cancer.” They aren’t sure what to say or do in responding to such an unexpected announcement. I know people have different beliefs and ways of dealing with events in their own lives and the lives of others. I don’t disparage anyone’s means of coping with the difficulties of life. If it works for them, I’ve got no cause to argue, but the same approach does not necessarily work for me. I’ve observed various responses when people learn a friend or acquaintance has cancer. It’s quite common for people to quickly offer prayers, encouragement for fighting the coming battle, or assurances that all will be well.
Anyone reading my earlier posts knows I don’t believe in praying to an all-powerful god who makes decisions regarding the details of life and death, determining what happens in our lives. Even if I did believe in such a god, I wouldn’t expect the natural functioning of the universe to change because of the number of prayers (or lack thereof) offered on behalf of a particular outcome. If someone has such beliefs and it makes them feel better to offer prayers on my behalf, of course they are free to do so. I appreciate their apparent concern for my well-being. But they need not tell me, “I’m praying for you,” or indicate they will ask others to pray for me. Those words have no real meaning for me. I’d rather hear a simple expression of caring and support such as, “I’ll be thinking of you as you deal with this. Let me know if I can help.”
I also don’t need or want to hear the all-too-common expressions such as, “You’re tough; you can beat it,” or “Just fight it; I’m sure you can win,” or “Everything will be all right.” Dealing with cancer is not a matter of fighting a battle or a war. Cancer is a disease to be acknowledged, engaged, and treated as one might deal with any other problem in life. It doesn’t really matter if I’m tough or if I think of this experience as fighting with all my might. What matters is that I face the reality of the disease, seek out appropriate resources and potential treatments, and then do the best I can making decisions, taking actions, and doing the same with whatever results follow. Being tough or fighting offers me no more assurance of ‘beating it’ than someone’s well-intentioned offer of prayers would give. And surely the uncertainties of cancer rule out proclaiming, “Everything will be all right,” if by those words one means cancer will have no negative impact on my life.
Did knowing I had cancer really change anything? There were still many unknowns about my cancer and the effects it would have on my life. Various treatments might remove cancer from my body, but there was no assurance of a positive outcome. The treatments themselves might have complications and side effects; they would also need to be dealt with if they occurred. The realities of life with cancer could change my outlook on life and my manner of living, but I hoped any changes would be for the better. Cancer could shorten my life, but so could any number of other diseases or accidents or events, any of which might or might not occur.
I was still the same person I had been two weeks before the diagnosis, but now I had an additional bit of knowledge about myself. How did I feel about the fact cancer was a part of my body, a part of my life? Quite honestly, at the time I didn’t feel significantly different than I had before. I wanted to go on doing the things I would normally have done, engaging in activities as I usually would have, caring about the things which had been and continued to be important to me, loving and being loved by those dearest to me. In other words, I wanted to get on living my life as I had been here on our quiet homeplace on this mountainside at the end of our road. From the beginning of life, each of us is moving into a world full of uncertainties, going toward death which each of us will face, but also advancing into life filled with possibilities and wonders and joys to be embraced. Cancer was one of many things which had become part of my life and my world. I trusted I could and would make the best of the new challenges and opportunities my cancer brought.
More than two years have now passed since I had the biopsy described above. Much has happened during the intervening time. The biopsy showed my cancer was more aggressive than desirable, as if any degree of cancer is desirable. The Gleason score, which evaluates the likelihood of the cancer growing and spreading, was 7 out of a possible 10. That result meant there was an intermediate risk of aggressive cancer. After consultation with my local urologist we determined the appropriate next step was surgery. I was referred to a specialist in robotic-assisted surgery in Winston-Salem who agreed with the diagnosis and plan. I had the surgery at Wake Forest Baptist Medical Center in early October of 2017, about two months after the biopsy.
Recovery from the surgery went well and I was able to return to my usual activities fairly soon. But another period of waiting in uncertainty followed the surgery. The post-surgical pathology report showed my cancer was actually even more aggressive than the biopsy had indicated. The Gleason score was 9 out of a possible 10, meaning my cancer was even more likely to spread rapidly. Follow-up PSA testing to determine the cancer status is done every three months after surgery for a year and then every six months if the tests show undetectable levels of remaining cancer cells. My surgery had either removed the cancer from my body or the disease was still there. The PSA tests would provide the answer regarding that big unknown, but I had to wait another three months before I could know the result. Nothing I could do while waiting would change the reality the test would reveal. I simply wanted to continue living my life as I had before. On October 21 of 2017 I wrote the following:
“Two and a half weeks ago I had major surgery for prostate cancer. Thanks to modern surgical techniques and treatments I’ve been able to be up and around, mostly free of pain and side effects, and able to start getting back to my usual activities. I’m not supposed to do overly strenuous work or heavy lifting but otherwise I can mostly do whatever I feel able to do. Today I felt like going out into the garden. We had gotten some Jerusalem artichoke tubers recently and they needed to be planted; I could do that task.
“What a joy to be out in the garden again, digging into the soil and preparing the spot for planting. Covering the tubers with the loose soil I could imagine the excitement of the next spring; this would be a new crop, one we had not grown before. The current growing season has mostly ended now, but I could see with satisfaction the remnants of what had been there throughout the previous months: a few beans, strawberries, blackberries, and ears of Indian corn still lingering for their final picking. Weeds had grown up in the midst of the crops and obviously needed pulling, so I was able to spend an hour or so weeding, rewarded with the sight of clean bare soil, loose and ready for another year. There were also some pawpaw seeds we had saved from a recent treat; I planted them in a large container, hoping for sprouts next spring that I could plant around our homeplace, another new crop, for us and probably for the raccoons and possums as well. And those European mountain ash seedlings which had sprouted from the abundance of berries not consumed by the birds also got put into beds where they might grow stronger with better care and attention. What a great way to spend an afternoon here on the mountainside!”
Although we’ve talked through these issues on numerous occasions, I appreciate seeing them memorialized in writing. It helps to distill one’s thoughts to ‘paper.’
I certainly agree, especially since our memories tend to fad a bit over time.
Ron, I did not previously know about this. And I truly believe your blog posts should be complied into a little book to preserve them for your family. With KDP, if you prefer to not have the book available to the public, you can “unpublish” the book after you have ordered the number of copies you want (and you can republish it if you later decide you want to order more).
Very few people other than close family knew until now, Leslie. We’ve been waiting to know more details. Hopefully these posts and some other things I write will be put into a book at some point. Probably it will be public since I will be glad for anyone interested to have access to what’s here. By the way, Carole says I can’t work on a book of my own until I finish helping get hers ready for publication.
Ron, good insights. I am glad to see you took some time to explain the Gleason score. Some people hear that you should just take a wait-and-see attitude with prostate cancer and that is likely true with a low Gleason score. It is important for people to realize that sometimes the Gleason score is high and requires action.
Thanks for your comment, Jim. In some circumstances it is appropriate to take the watchful waiting approach when confronted with rising PSA scores and even after cancer is diagnosed with low Gleason scores. But at other times more active steps are desirable. The existing guidelines for me when I reached the age of 70 would probably have suggested that it was no longer necessary for me to have annual PSA tests. Without those simple tests, I would not have been aware of my rapidly rising PSA levels.Even at that point there was not a strong recommendation that I should have a biopsy. Yet the biopsy indicated aggressive prostate cancer and my surgery revealed it was more aggressive than shown in the biopsy. This all goes to show the importance of doing one’s own research regarding health concerns and then making well-informed decisions about the best actions to take. I would encourage everyone at whatever age to act accordingly. Thanks for reading my posts and for you comments.
My friend, you have given us a rare gift of sharing yourself with readers. Thank you for educating Jim and me, for allowing us into your thoughts and soul. My final memory after reading this blog is that you confronted the disease, made wise decisions about treatment, and then went out into the garden to plant and pull weeds. On with life!!
Jan, thanks so much for your kind words. While my writing in this and some of my other posts deals very specifically with my cancer experiences and my responses to them, my thoughts and behaviors seem to me appropriate for all of life: face each moment as it comes, determine the best possible action at the time, and then move on to the next moment. As you say, “On with life!” And there is so much of the life around us to appreciate and enjoy.