Strolling Towards Death
Guest Post By Robert Hanlon
I’m dying. Yes, yes, we’re all dying, from the moment of birth, blah, blah, blah. But me, a little more so. My cancer is back.
I’m not sick. I have an illness, if that’s what prostate cancer is. Or a disease. Or a condition. I’ve periodically read a lot. Swirls of studies, web-blogs, newspaper articles about treatment, survival, symptoms, support programs. And then I have forgotten or conflated that piecemeal collection of information and commentary. I know a lot. I know almost nothing. I should know more. I don’t want to know more. No more. At least not yet.
I have no symptoms, at least none from cancer. Every once In a while I get a twinge. Could that be a bone lesion? No. I know it can’t be, because I’ve just had a bone scan, and I’m clean. For now. I get a hot flash. That’s probably the hormone treatment. There is a male menopause, especially if you are taking androgen suppressors. Or maybe it’s just a bit warm in here. The headache? What’s the big deal about an occasional headache? Weight gain? Well, I didn’t need to get sick or get treatment to struggle with that.
So I’m not sick. I listen semi-patiently to the narratives of my cancer-free age mates. Talk of real pain and limitations and surgeries and rehabs, and I know these people hurt, but will it kill them? It’s not cancer. I have cancer! Don’t bother me with your petty aches and nostrums. My situation is life or death. But will mine kill me? I don’t know. For now, I sit here, still able to work and play and eat and do almost anything a late middle-aged man should be able to do.
When I first heard the diagnosis, I did the usual – fear, denial, panic, focus on treatment, insistence that everything will be all right, we will beat this. But on the eve of my surgery, I lay calmly in a hospital bed and thought about the possibility of dying the next day. I might. It would be sad. I wanted to live more. There was a lot I still wanted to do. See our kids get married and have families. Spend more time with my wife. Spend more time doing the fun things.
But if I died, it wouldn’t be a tragedy. I would have lived nearly sixty years. I had two good careers and did some things I thought were important. Didn’t change the world, didn’t bring world peace, didn’t create a masterpiece. But I had moments to be proud of. I had two good families – a marriage that lasted over twenty years, many of them happy, that gave us two sons; a second marriage that gave me contentment and made me a better person. I did so many things that I wanted, and there was no longing for a special event yet to come, the particular challenge still to be taken on.
If I died the next day, others would be sad, and would struggle for a while. But my wife, my children, my friends were all strong, well established people. They would mourn; they would heal.
Immortality didn’t fit in the mix. Long ago I stopped fearing, striving, believing in a power or a place that judged or rewarded. At some point I decided that I had to judge for myself, judge myself, and find reward in how I felt about my actions and attitudes in this life. I could have done better here or there. But I felt pretty good about what I had done, and what I had become. I had twinges about not quite being that prodigy that I once wanted to think I was. Where was the flash of brilliance that might have blossomed from the little sparks I felt inside? But overall it seemed enough, even if it ended the next day. Besides, everybody dies.
Then I was sick. Surgery hurt. Not the process, but the aftermath. The fear hurt even more. Will this pain never end? Does that wrenching feeling mean I’ve torn something loose inside? Will the removal of these tubes be unendurable? What parts of me won’t function even after I heal? Somewhere I knew that none of the thoughts helped or made much sense, but they terrorized nonetheless.
The tubes came out. The stitches stopped twinging. The fatigue abated. I recovered. I had beaten cancer. On with life! A son’s wedding! Vacation plans. A weekend house. Back to work. Obladi, oblada.
And then I hadn’t beaten it. Three months later, invisible things in a test-tube said I was still ill. But I’m not sick! Yes, but the microminature signals that the labcoat guys worship say I am, so who are you going to believe? Crank it up again with we can do this, we can beat it, yes we can. Radiation! Hormones!! An experimental chemo with hormones!!! Let’s do it!
Slogging toward life. Forty days in the zapper box. Hours, days with a needle in my arm (and, oh how I hate needles). Belly injections and pills and sweats, and naps, and tossing and turning, and naps, and naps. And then it was over. And I was done. The number gods smiled on me, and I was cured. Well now, let’s not be hasty; this is a marathon, not a sprint, and so on and so on and …
And then it got quiet. Quarterly check-ups. Blood tests and poking and questions. All good, all right. The leash got longer. Six months between tests, then a year. Finally I hit the magic number – five years out. No sign of cancer. “Undetectable” they call it. Am I cured? Is it gone? Well, everyone’s different, … and Statistics don’t mean anything … and So far … Say “Yes”! Say it’s so!. Okay, no matter what they say, I’ll nod and smile and think we’re done, we’re good. Even if I never let go of the thought, the tiny muffled worried face hidden in a corner of my sometimes consciousness, that we’re never done.
It stayed quiet. Until just after the eighth anniversary of the end of my treatments. And then it wasn’t gone.
But I’m still not sick. No symptoms, no pain but the crappy signs of aging – creaky joints, mild cataracts, the need for naps. But I feel sort of fine! Except, of course, I have cancer. The numbers don’t lie. The bad stuff is sending out those signals that can’t be denied. Rally the troops, we’re back at war.
This next battle is a more of a skirmish. Back to the hormones that nagged and dragged but never laid me low. How long? As long as they keep working. How long? Maybe the rest of your life. Does this cure last? Well, we’re talking control, not cure. How many people does this work for? Ah, you know, everybody’s …. Statistics are ….
Okay. Okay. I take the medicine and wait. No, I take the medicine and forget. I go back to my life. What else is there to do? I have read enough to know that this is the standard approach. Hormones do it until hormones don’t do it. Thinking and planning and studying and worrying will change nothing. So I try to stop thinking, planning, studying, worrying. I try. Mostly I succeed, even with the worrying.
What happens when the hormones stops working? I don’t know. The current treatments for cases that stop responding to hormones are not very promising. They do not cure anything. Some treatments seem to hold off serious debilitation for a few months. Some reduce the pain or ease other symptoms. Sometimes in combination or sequence, the good effects stretch out a little. But for most people, none of them, so far, cure or are even likely to prolong health or life for years.
And most of the options make you sick. My first round of chemo was the amateur kind. Loss of body hair, fatigue, headaches. I went to my job the whole time. If I need to do it next time it’s the big league stuff. I subscribe to an email blog where my fellow sufferers and their families trade insight and encouragement about the latest treatment, the possibilities, the struggle, the hope. Most of them talk about what to do when X fails, or how can I overcome this symptom so I can keep taking the pretty poison for a little longer. I glance through them and quickly move on. I don’t need the information or the encouragement yet. I don’t know when, or if, I will.
I know that there are thousands of doctors and researchers looking for a better way, true cures or controls over this disease that can really extend or improve the life of some or all of us. No one really thinks it’s here yet. If that happens, I will run to it. I still want to live a good bit more.
But what happens to me until that breakthrough? What happens if I do get sick? Do I let myself be made sicker in the hope that I will last a few months longer, hoping that the breakthrough is just around the corner? And that I won’t be too far gone to benefit? I can conjure an image of a life revolving around symptoms, and treatment and feelings of debilitation. It doesn’t seem like a life I want.
Most days I don’t give cancer a thought. I understand many patients’ constant preoccupation, the eager seeking for any approach that will buy even a small amount of time. Some have young families or others who truly depend on them. Some are on a quest, accomplishments yet to be achieved. Some just relish every breath, and a day, no matter how hard, is better than no more days. Maybe some fear what may lie beyond death.
My current life is a stroll. I’m retired and spend my days fixing up my old house, helping my wife a bit in her garden, reading, writing, visiting my grandchildren, playing with friends, mucking in local civic issues, fiddling on the computer, sailing in nice weather, traveling a bit. I like it. I’m sixty-seven, and I might be doing this for another twenty years. Or not.
There are more things I want to see and do, especially with my family. But there are no critical events, no absolutely essential role I play that forces me to be here for a few more years or even months. From the luxury of this abstract mountaintop, I whisper “The desperate battle is not for me!” I will do the reasonable, the simple, but I will not thrash and struggle to eke out every possible breath.
I don’t know why I feel this way right now. Maybe it’s because I have never been in a truly terrifying situation. Perhaps I’m being selfish, only thinking about how things affect me, and ignoring the feelings of my family and friends. Maybe I’m being arrogant, or simply in denial and acting like it can’t really happen to me.
Will I feel the same when disease and death become a bit more real, more imminent? I have no way to tell. I’m not very brave, and I don’t know if I fear more the painful life or its end. So for now I’m not running or fighting or cursing or crying. I’m just strolling along.
Thanks for sharing your experience that how you are surviving with prostate cancer, I just hope a better health for you.
Robert, thank you for sharing your deep thoughts about our mutual disease. I’m stage 4 mets to bone, so I call living from “scan to scan”, but the cancer won’t give up on me and I haven’t given up fighting it mostly due to having family that I won’t to be near and camping for which my wife and I so enjoy. I don’t have pain either but this new medicine Xtandi has kicked my butt somewhat.Energy levels are low and I get sick of taking all the meds. However I recently volunteered for our Hospice center choir and I got a first hand view of the folks with worse conditions and that participation has helped relieve me of some of the “poor pitiful me” . Thanks again for your message and believe me I have felt all those feelings as well. Sadly most men don’t want to share these thoughts and feelings. God Bless you and your progress.
This is an awesome thread.
We so often take on the role of the valiant warrior that it is a relief sometimes to let down our defenses and talk from the heart about our deepest feelings about confronting the end stages of this disease.
I used to say, before I knew anything about it- “If I get cancer, let it be prostate cancer” because it seemed the most “beatable” of the cancers I had read about, casually as those not yet diagnosed tend to do.
Be careful about what you wish for, as they say, because when I did get cancer, mine was not the “pussycat” I had in mind when I made that cavalier statement.
My Gleason 9[5+4] cancer is a “tiger” that will kill me if I don’t get it under control.
So far, according to my exponentially rising PSA test results, it is still thriving even after a robotic-assisted prostatectomy, and salvage radiation treatment.
The only treatment that slowed it down, again at least according to my PSA test results, was a very aggressive trial with medical marijuana, but that was only for about 4 months and the side effects were pretty severe. Being stoned for 3 months of active treatment is not then experience you might think it would be, particularly when you are consuming .9 grams per say of high potency medical marijuana.
I have found the Serenity Prayer to be a great source of comfort as I stroll along with my prostate cancer:
Grant me the Serenity to accept what I cannot change
Courage to change what I can
And the Wisdom to know the difference.
All three elements must be brought into play.
Acceptance, without courage and wisdom, leads to passivity and denial.
Courage, without wisdom and serenity, leads to rash, fool hearty actions.
Wisdom, without courage and serenity, leads to paralysis and empty speculation.
I recently read a great book by Anatole Broyard- “Intoxicated by My Illness’
it is an extremely well written account by someone who faced the end stages of prostate cancer with courage, grace, and dignity.
I also recommend the movie Lucky to anyone contemplating the last stages of this journey. It was harry Dean Statton”s last movie, released shortly before his death and it is not only brilliantly acted by a terrific cast, but it is truly inspirational without being preachy or maudlin.
Lets keep this discussion going. It is an important one that blogs like this make possible.
Thanks to all who have contributed so far.
Just had my first bone scan after 3 months of Xtandi, a new drug that is supposed to “stick a sock” in the cancer’s mouth. No extension in the lesions on my pelvis and psa still .15 so it may be delaying the cancer spread better than I expected. So on to vacating and trying to forget the I’m stage 4 and have no pain.
Thanks for sharing experiences.
Thankyou Robert and all others who have shared their thoughts,feelings, concerns and actual treatments.
Robert: It is with much gratitude that I have received your posts. They speak to my heart and mind in a way that only people going thru the “trial” can appreciate. Your writing style is fantastic and says what I have felt for a Long time but could not verbalize so anyone else or even myself can understand. God Bless you and all others in this battle with skirmishes that have unknown consequences.
Myself: Long story short, 20 years since I had a prostatectomy, continueing treatment including removal, tissue( left hehind) 40 trips under the radiation gun with no known place to aim, lupron and casodex and now in the no mans land of having non-metastic prostate cancer. Presently, as before continued rising PSA controlled for 20 years without being seen on a high – res CT scan, sodium Flouride PET, Nuclear CT scan, including as late as last June.(Details, lots of details).
And in case Is ound ungrateful, no I am very grateful that I am on this side of the sod, even with all the obvious side effects to endure, plus the ever increasing ailments that an age of 77 brings. Best wishes to all!!!
Fantastic account of your ordeal that mirrors mine exactly. Reading your post has both encouraged and motivated me to fight the good battle. Myself, age 57+, diagnosed with Stage 4 Prostate Cancer in October 2017, Gleason 4+3. Have just completed my 6 cycles of Chemotherapy and at the same time on three monthly Hormone Jabs, which would continue. My PSA has decreased to a 4 after my 5th cycle. At the moment my Urologist says we would take it one visit (with him, every 3 months) at a time and monitor the situation. Like you, Robert, I want to stroll through my life with my wife, sons and grandchildren. I am learning to enjoy the days one day at a time and move on with my life. Yes, I am always envious of those whom I read about and those that I know, telling me that they have beaten cancer. I always look forward to my day valiantly. I like what my wife told me once when I was in a bad mood and crying my eyes out, “Learn to see it as a challenge and learn to accept your situation. Take it as a chronic disease and handle it with love and care.”
But by nature I am not very brave and an aggressive type. Thus there are days I cry and become very moody about my future and there are days I am the most happiest guy around spreading infectious glee to all around, enjoying the present moment. Its hard I must admit, but I am trying hard too as I really want to live long and be around my wife and family. Just be with them and enjoy the ups and downs. I sincerely pray and hope Father Time would be on my side and help me live out my dreams.
My best to you Robert and all in this thread. Like me, “Don’t Give Up!”. Oh, yes, I hate needles too.