Uncertainties of Life: Part Four

This is the final post in a series of seven. To read from the beginning click here.

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Part Four: Living in the Reality of the Present

As I indicated in my previous post, I had surgery for prostate cancer in October of 2017. Three months passed and I had the first of the every-three-months blood tests to check the status of my cancer following surgery. The test showed undetectable levels of PSA (prostate specific antigen). We were pleased to get the test results, but the status of my cancer was no different than the day before. We just had the additional bit of information indicating surgery had apparently removed the cancer from my body. Six months, then nine months, then twelve months brought similar test results: undetectable, the word one wants to hear in this situation. Another milestone had been reached. Now I could move on to the every-six-months testing schedule.

I know I’ve written this before, but it bears repeating because it expresses my feelings at each stage since first learning I had cancer: I’m still the same person, wanting to continue doing the same things which are important to me with the same people I love and care about. Nothing feels different on a testing day. The test will either show cancer is present in my body or it won’t; the result of the test will not change who I am. However, the first of the six-month tests in May of 2019 did show different results, as did a follow-up test several weeks later. No longer undetectable, my PSA level had increased, indicating a likely recurrence of my cancer. Even a small increase after surgery is a big deal. Most of the cancer had been surgically removed, but some cancer cells had remained. They were growing again.

Studies indicate treatments at the time of early PSA increases yield more positive results than waiting for the disease to progress. So it was time to have more tests, to consider options, to make decisions, and to take what we determined to be the best actions available. No certainties, no guarantees, no sure idea of what might lie ahead. But then that’s true of every aspect of our lives. We think about what we want to do in our lives, determine the things we would like to have happen, and plan the actions we believe most likely to produce those outcomes. And then we step out into the unknown and do it all again with whatever we find there.

In mid-July I was scheduled to have a special PET scan, a relatively new imaging procedure using radioactive tracers intended to show the location of the cancer cells. My cancer was quite possibly at the site where my prostate had been prior to my surgery—if it had not spread to other areas. That scan and a rescheduled one the following week were both canceled after Carole and I had begun our hour-long drive to Hickory, the closest location where the test is available. The nuclear pharmacy supplying the radioactive tracer for the scan wasn’t able to deliver the required material from its locations in Columbia or Winston-Salem in time for my appointment. We were frustrated by the delays, but the PET scan was finally done on July 30 of 2019.

A week later I was due to have another PSA test and to receive the results from my PET scan. I expected my PSA test would show another increase; the rate of change would indicate the aggressiveness of my recurrent cancer. I anticipated the PET scan results would show whether the cancer cells had moved into other parts of my body. I was eager for the clarification the tests would provide to the uncertainties of the past few months. Not that anything about my cancer would be any different than it was before the tests, but I was anxious to know its current status. I wanted to learn about the next steps to be taken and the timeline ahead so we could get on with other activities in our lives.

My appointment was apparently the last one of the day. My blood was drawn for another PSA test, but because of some miscommunication in the office, the lab machines had already been shut down for the day; my test could not be run until the next day. To add to my frustration, the out-of-town imaging center where my PET scan was done had sent my doctor someone else’s scan report. Again, more waiting. Neither delay would really make any difference. The PET scan results had already been evaluated and the PSA level was already in the tube containing my blood. But the information contained therein had not yet reached my doctor or me. Another period of uncertainty.

So Carole and I went to the car, talked briefly about what had just taken place in the doctor’s office, and took what seemed the best next step—we headed off to a favorite Asian restaurant for dinner. At the end of the meal we got the customary fortune cookies. Given the uncertainties of the day, we were curious to see what our fortunes would say. Carole read her fortune which was one of those suitable for anyone in any life situation. I looked at mine and said, “Mine says: Your fortune today has been delayed or canceled. Please try again some other day.”

No, of course the fortune cookie didn’t contain those words, but it would have been appropriate. Laughing to each other, we drove to Blowing Rock for two hours of the twice-monthly music jam performance (bluegrass, folk, country, gospel, whatever someone wants to sing) we’ve been attending fairly regularly for the past several years. The jam features amazingly talented musicians, both regulars and anyone else who wants to perform, including a young neighbor who started playing instruments at age three and is now incredible on any instrument with strings. The night’s performance was especially lively and entertaining. Our day had certainly not been what we expected, but what a great ending.

The frustrations of the delays, cancellations, and miscommunications seem to all be behind us for the moment. My blood test did show the expected increase in PSA. The PET scan showed my cancer had not spread beyond the original site in my pelvis. We have met with the radiation oncologist and have begun procedures leading to an eight-week-long course of radiation treatment to start shortly. I have already begun hormone therapy intended to stop the growth of my cancer cells. I finally have a sense of the treatment timeline before me.

We know there are still uncertainties ahead in our new adventure. No doubt we will encounter the unexpected many times. It has seemed strange all along the way that something having such a profound effect on my life has had no obvious physical symptoms or effects so far; we know that is subject to change. But I expect to continue living my life pretty much as I have been doing. Ignoring or failing to acknowledge the reality of my cancer will not lessen the undeniability of its presence. But worry won’t help, wishing it away won’t help, calling on the universe to change the realities of the way things work won’t help.

As I wrote more than two years ago when the biopsy first confirmed the presence of my cancer, I don’t really feel much different since cancer has become a part of my life. Many things are part of my life, no one of which defines who I am. All the experiences and actions of my life, the people I have known and loved, the things I have learned and thought and believed, and everything else which has affected my life and influenced the person I have become, those are the things which define me. I have cancer, I have been treated for cancer, and I am living, even though I am still living with cancer. However, I definitely do not think of myself as a ‘cancer survivor,’ the term so frequently attached to people in my situation. Cancer and all the things which go along with it—physical effects minor and major, multiple medical appointments and treatments, concerns of family and friends, uncertainties of all sorts—have now taken a place in my life and sometimes in my daily activities, but they are by no means the predominant part of my life or the most important to me. Very soon cancer will demand even more attention, more time, and more energy. I hope all the most important parts of my life can continue pretty much as they did before I knew I had cancer. I’ll do the best I can to make it so.

Life is good—every moment of it, with cancer or without. Each precious moment is ours to appreciate and enjoy and savor with the greatest mindfulness possible. The cool mountain air flows in through our open windows. The colorful blooms of the flowers are everywhere within my field of vision. The birds are calling and singing in the trees and bringing food to their young ones. The young mother raccoon comes to our deck each afternoon for a bit of food and to peek in our door; now she brings her adorable kits to continue a tradition going back many raccoon generations here at our homeplace. The love of my life sits nearby, sharing the wonder of this place with me every day. Yes, life is indeed very, very good. I couldn’t ask for anything better than what I have.

Uncertainties of Life: Part Three

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!”

Uncertainties of Life: Part Two

This post is fifth in a series of seven. To read from the beginning click here.

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Part Two: Uncertainty Gets Very Personal

One of the greatest uncertainties in life is death. From the moment of birth each of us is moving inevitably toward the moment of death. I read recently an article in which a doctor wrote of his experience giving his patients the diagnosis of a serious illness such as cancer. He said the first question most of his patients ask is, “Will I die?” His answer, of course, is, “Yes you will die. Each of us will. But the cause of your death, when and how you will die depends in part on the decisions you make and the actions you take between now and then.” In my previous post I wrote that our lives are filled with almost nothing but the unexpected between the boundaries of birth and death, even though we would like to believe it is otherwise. The boundaries of life as we know it are birth and death—the beginning of life and the end of life. The specifics of birth and death—the what and how and when—are as uncertain and frequently unexpected as the details of all that happens between these boundaries of our lives.

Death is probably not a favorite subject of discussion for most people even though it is as much a part of life as anything else. As we get older, death seems to naturally become more a part of our consciousness, perhaps because we see more people dying who are in or near our own age group. Of course, people of all ages die from accidents, violence, suicide, illness, disease, and multiple other causes. At a recent fifty-fifth reunion of my high school class the list of our former classmates who had died over the years was long and was growing almost at the same time as we were gathering. A few of those classmates had died when we were still in school; the deaths of the others were scattered along the timeline since then. The deaths of all those people shouldn’t have been surprising since we all are now in our seventies, but it was somewhat startling to be confronted suddenly by the number of deaths of people we had lived with daily when we were younger.

My own extended family group also has gotten smaller and smaller with the passage of time. My grandparents all died before I finished high school. My parents, all my aunts and uncles, and my first cousins are also dead. More recently, my younger sister also died, leaving just my older brother and myself from our generation and those before us. I’m sure this is not unusual, but it does underscore the uncertainty and unexpectedness of our existence.

I began writing some of this post more than two years ago. I was then at the end of a four- month-long period of uncertainty in my own life. A routine annual blood test for PSA (prostate specific antigen, an indicator of the possibility of prostate cancer) had come back significantly elevated from the levels found in my yearly tests during the previous decade. Several weeks later a follow-up screening test also showed an elevated reading. The next step (a few more weeks later) was a more detailed test ordered by a specialist. That test showed a 35% possibility I had prostate cancer, the second leading cause of cancer deaths in men in the United States. A biopsy was recommended to get a definitive answer to the big question: cancer or no cancer.

My first memory of cancer was in 1952 when I was six years old. I don’t recall how I learned of my paternal grandfather’s cancer; I might have overheard my parents or aunts and uncles talking about his condition. Those were the days when people didn’t talk much about cancer, mainly because they didn’t know very much about the disease. People usually discussed cancer in quiet tones, probably just within the family. What people did know was that cancer was dreaded, was usually deadly, and was something people felt ashamed to acknowledge in themselves or their family. As I recall, Granddaddy was confined to a very dark rear bedroom in his home and we could only go into his room briefly to visit. I don’t remember details of the events following his death, only a vague memory of sad neighbors and family members gathered to say goodbye as my grandfather’s body lay in state in the front room of the old farmhouse prior to the funeral. I do still have a vivid memory of a spot in a field some distance from the house where a pile of glass bottles was discarded, remnants from fluids and medications used as part of his treatment during his final months. In reality there were few things which could benefit most cancer patients at the time.

It’s amazing to see developments which have occurred in the treatment of cancer during the years since my grandfather’s death. The discovery of DNA, research regarding causes of cancer, development of new anti-cancer drugs, better imaging procedures, new screening tests, improved and less radical surgical techniques, and advances in chemotherapy and radiation therapy have all led to better outcomes for people with a cancer diagnosis. Public awareness and knowledge about cancer are much greater now. Attitudes have changed regarding cancer and those people personally affected by it. But cancer is still the second leading cause of death in the United States. The very word ‘cancer’ can still bring up frightening images of pain and suffering and death. No one wants to hear cancer linked to friends or family or themselves.

Over the years since my grandfather’s illness I have known a number of family members and friends who have experienced cancer in their own lives. Many, many more have been touched by the reality of cancer in the circle of people around them; Carole was recently able to name more than eighty people she has known personally who have had cancer. At times cancer seems to be everywhere, not only in the obituaries and news stories of those people who have had the disease, but also in stories of promising research into cancer causes and treatments and in appeals for support to fund the efforts aimed at advancing medical knowledge. But whenever cancer becomes a part of someone’s life, it’s probably unexpected and certainly brings with it a multitude of uncertainties. The unexpected news of a cancer diagnosis jolts someone into a new reality, seeing everyday events in an entirely new light.

My tests had suddenly thrust the question of cancer or no cancer into the forefront of my own life. Faced with that big question and the even bigger unknown answer, I was confronted with the more immediate concern of how I would respond if I did have cancer. So many questions and uncertainties came to mind. If I did have cancer, how aggressive was it and how far advanced? What treatments were available and what might be the consequences and costs, not just financial costs, but personal costs to myself and those dear to me? Of the possible treatments available, which would I choose or would I choose no treatment? If the cancer were life threatening, would I want to seek to preserve my life at any cost or would the quality of my life and the lives of my family be the primary consideration? Questions which once might have been more abstract had now been brought into much more concrete personal reality. The uncertainties surrounding cancer had now become a part of my life, things to consider while waiting for my biopsy.