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Coping With The Six Letter Word – Cancer (Part 3)

October 20, 2021

My journey is being narrated here in the hope that it will be of some help to those who find themselves in a similar situation in the future.

Here is part one which I published August 10, 2021:

I don’t normally let it all hang out but here goes!

Like most people, I always thought cancer would be someone else’s problem that I would read about, safely tucked away at a safe distance. It’s an ugly word and one that has become universally feared. I have recently joined that fear.

Many, many months ago my PSA started to rise, at first slowly and then it accelerated. When I asked my general practitioner what was up, he assured me that, “It’s just your age – It’s normal.” I accepted his answer but still asked about the sudden rise in PSA levels. He simply said, “Don’t worry!”

This went on for many months. As I regularly check my PSA levels, I became more concerned at my doctor’s cavalier attitude. Finally, just a week before he retired, I insisted on being referred to a urologist specialist. He wrote me the referral and then quietly retired, leaving me to face a very uncertain future.

The urologist appointment was uneventful. However, he was concerned with the PSA level’s sudden rise and ordered a test that measures the potential for cancer based on genetic markers in the urine content. The results came back stating that I had an 88% chance of having “significant cancer.” Yikes!

The next step was an MRI, It showed a “suspicious area” with significant growth outside the prostate gland. Double yikes! That was immediately followed-up with an in office biopsy. While these are not pleasant, they are needed to confirm a diagnosis of cancer. I waited impatiently for the results. When they came in, the first of the bad news was laid on me like a ton of bricks. Yes, I had prostate cancer in three of the four quadrants of my prostate gland with an “external abutment” and a suspicious adjacent lymph node. Now, we were talking triple yokes!

The diagnosis of cancer having been made, it was time to see how far it had progressed. First a bone scan was ordered. Thankfully, it showed that the cancer had not spread to the bones. That is a good sign as the contrary situation can be often fatal.

Next, a whole body and pelvic CTA scan were ordered to see if there was any obvious metastasis to nearby organs. That too was negative, although it came with a big asterisk. Because there was a suspicious lymph gland possibly involved, there were no guarantees. In fact, the diagnosis was moved ever upward to stage four cancer. Those are not words anybody wants to hear. However my oncologist remained optimistic.

The next step was to decide what to do about all of this. The choices eventually boiled down to two treatments: A radical prostatectomy (removal of the prostate gland) or radiation treatments. I opted for the latter, as they normally provide better results for men my age. Well, of course the journey had just begun. First, I was informed that I had to have two or three Lupron injections. These basically slow the cancer growth down as they are hormone treatments with some very significant side effects. Then I was told, I had to wait six weeks for the actual radiation treatments to begin. Those were determined to consist of 44 separate visits to the oncology unit of our hospital.

It’s not like the old days, when they just irradiated everything from the waist down. There was a thing called “simulation,” wherein a computer model is made of the proposed radiation including the scope and intensity of each treatment. I passed that part with flying colors. More waiting ensued along with more worry.

All of the “in betweens” in this process caused me to deeply ponder my life, my life expectancy and the future that laid in store for my dear wife of 40 years. Would I wind up dying anyway? Could we afford all of this medical stuff, even with insurance? (We are talking about thousands of dollars even with excellent medical coverage,) What emotional toll would the whole affair take on my wife, our marriage and our whole future? Lots of questions with very few concrete answers.

So tomorrow I start the actual radiation treatments along with another “simulation,” replete with the unusual diet, bowel and bladder preparation. What the next nine weeks will hold for me is an unanswered mystery. The doctors are optimistic (at least verbally) but I still wonder and worry. As with all things, time will tell.

Here’s an update as of September 24, 2021:

Today I completed radiation treatment number 31 out of 44; over the hump as they say. It’s been an eventful six weeks full of the good, bad and the ugly.

The good? Every single person I have interacted with at the Pardee Cancer Center has been wonderful with a capital “W.” My oncologist, all of the radiation technicians, nurses, and front desk people are of a special breed of compassionate, caring and dedicated individuals that exemplify what medicine should be about. They all have been wonderful and have treated me with dignity and compassion all the way through this process. I have grown to admire each of them!

The bad? Well, here’s something the internet articles and handouts don’t mention in great detail. There are side effects to all of this radiation stuff and also in the mere preparation for treatments. Let me explain. Radiation treatments tend to tug a your fatigue levels after about week five; I have now seen that first hand although I still go to the gym and am able to walk between 2 and 5 miles a day. That’s not bad but a few of the “extras” are. First, each of these 44 treatments requires a completely full bladder to avoid errant radiation from hurting that organ. That is a major feat that has required me to drink between 32 ounces and 59 ounces of water one hour before each appointment. Then I have o drive 11 miles to Hendersonville, arriving 20 minutes early. That’s a long time to hold that much water!

The bowel thing is a whole other subject. The rectum must be empty and flaccid (the opposite of the bladder) so that it too won’t be damaged by the radiation. That is a hard trick to pull-off by itself for one day, let alone 44 days. Both of these are checked at each visit by first doing a CTA scan. I was doing just fine in both departments until the radiation finally caught up with my bowels, resulting in an irritated rectum, which in turn swelled and interfered with the radiation field. This required another “modelling,” a second scan to use as a new template for the treatment area, designed to exclude most of the bowel, While this is somewhat normal, the question remained: What to do? Tons of Imodium AD, a strict low fiber diet and, of course, more medicine. The doctor prescribed a product that cost $170 for a couple of ounces. I balked at the price and told him I would use a Cortisone cream instead. I won the argument but I’m not yet sure of the results. Like everything else, it’s wait and see.

The ugly? This is a long list but I will make it short and simple. The first problem was that I found out that I will need 8 Lupron shots over 2 years, not the original 2 or 3 that were mentioned at the outset. These each carry significant side effects and a price tag of over $28,000 each. Yes, you read that right. Thank God I have excellent insurance! I would hate to have to come up with that quarter of a million dollars.

The second problem was the ugly reality that even with all of this high price, wonderful care, and modern technology, my future is very much uncertain, Not one ounce of any of this comes with any guarantee. In that I’m a person who deals with concrete facts, this has been immensely frustrating. It’s like putting all of your money into a bank and being told you may have a great return or you may lose everything. It doesn’t give me a warm and fuzzy feeling.

The final problem is related to the second. I have bounced between optimism and despair on a weekly basis and I have even told my oncologist that I often feel the whole process is a waste of his time and my money. Some days I’m confident that I will beat all of this and the whole process is like a piece of cake. Other days, I just get up in the morning and ask, “What’s the use?” I am keenly aware that a positive attitude goes a long way in any healing process but I am also a person who is firmly grounded in reality. Between well-meaning friends lined up to blow happy thoughts and smoke up my butt to those who generalize and say prostate cancer is “no big deal,” I am often left for the first time in my life simply confused and a bit scared.

I have decided in the end to take the path of Pavlov’s good dog, do what I’m told and hope for the reward in the end. Is there really another choice?

Here is an update as of October 19, 2021:

Last Wednesday I completed my 44 radiation treatments; it was a long and somewhat harrowing journey. Honestly, the hardest thing that day was to say goodbye to all of the very wonderful people I had encountered at the Pardee Cancer Center. These are a dedicated group of professionals who had become an important part of each day for months. I will miss them although I hope I am not back too soon in a professional setting.

I got up early the next morning out of habit to prepare for my radiation and suddenly realized I was done. What to do? Well most of you know that I am a fisherman, so of course I found myself wading the North Mills River by noon in search of trout. It wasn’t a stellar day for fishing but getting back to my stream and having lunch with my wife was a welcome change in pace. I even managed a few Rainbow Trout in the process.

However, I noticed that I was a little more fatigued than usual. I only walked and waded a couple of miles of stream but I could definitely feel the pull of all the radiation and Lupron. I brushed it off as no big deal.

As the weekend approached, I found that I had to deal with yet another side effect of the whole process I had been through: Brain Fog. This general term is best explained as a slight inability to concentrate, remember and articulate. It is devastating for a writer such as me. I have been struggling a bit ever since to the point of having to ask my wife to dial telephone numbers and do other small things that suddenly seem overwhelming to me.  Even writing this addendum is tiring as I constantly make typos that need correction. This was all a surprise to me so I did a little research and decided to cope with it all as just another aspect of this strange journey I have been on for months. Playing guitar seems to help.

Hopefully the bladder and bowel side-effects will diminish soon. As of now, they have not but I am ever hopeful that things will get back to normal soon. While everyone around me says, “Great, it’s over,” I know that it is indeed not over until the “fat lady sings.” Hopefully, it will be an aria of absolution and not a requiem.

I will see the radiation oncologist next month for a checkup and then again in two months to start the process of follow-up tests, scans and more hormone shots. Hopefully my PSA will be a negligible number in the future and I will eventually get back to being the real me. In the interim, it looks to be a waiting game. At least I have the hope given to me by an excellent cancer treating team and a very supportive wife. By the way, Rachel came with me for each radiation treatment. That in itself has given me a big boost. I will keep you posted my friends!

The above photo is me smiling confidently in the radiation machine.

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  1. Timothy Price permalink

    Good for you getting through the 44 treatments. With radiation you get brain fog? We who have had a lot of intense chemo get chemo brain. I still deal with it. I go between remembering things really well to forgetting what I’m talking about in the middle of a sentence. It’s really frustrating. I can’t remember names worth a darn. The worst of my lasting side effects in nerve damage and neuropathy.

    Liked by 1 person

    • Each treatment comes with its own set of side effects and non of them are pleasant. I suppose it beats the alternative.

      Liked by 1 person

      • Timothy Price permalink

        That’s what my doctors always say when I start bitching about side effects.

        Liked by 1 person

  2. Best thoughts your way, Allen.

    Liked by 1 person

  3. Thank you for sharing the journey. I will not blow positivity smoke up your butt but I will send up a prayer for you, and share one of my own guaranteed motivational bon motts.

    Keep on going or go six feet under.

    Liked by 1 person

  4. Hopefully the worst of it is behind you and things keep getting better. Glad you could get out on the river, and get your music therapy in, too.

    Liked by 1 person

  5. My prayers are with you 🙏❤️

    Liked by 1 person

    • My wife and I thank you!

      Liked by 1 person

      • You’re very welcome, Allen. God bless you and your wife. Sorry to be annoying but I’ve heard that raw juices are very helpful, I’ve heard of a man who cured himself by consuming a raw juice diet on a strict schedule every hour or so, (if I can find the link I’ll post it here). I lost my mom to stomach cancer last year, my heart goes out to you. I wish you good health and recovery❤️

        Liked by 1 person

    Thank you, Chris

    It doesn’t seem enough to simply add this to a list, yet it is the best way for many to learn about the journey so many face. I admire your courage for sharing this.. it can’t be easy, but this will prepare others for what lies ahead as well as encouraging them to live the best they can. Surely it will also encourage all to have those tests that we should be doing regularly.
    I look forward to seeing some photos of all those fish you catch.
    My prayers and thoughts are with you and your loved ones.

    Liked by 1 person

  7. The “like” button always seems out of place in such a case.
    You’ve probably heard many of those, but I’ll give you my opinion:
    On the one hand cancer treatment has progressed incredibly. (Daughter #1 is an MD, and works at the local Cancer Institute.
    On the other hand I have lost good people to the beast. Including my mother… I helped her as much as I could, but no dice.
    It is a matter of dice… Alea.
    You did the right thing. Go through the 44 days… Now is a waiting game. The only sane answer is this: “take it one day at a time.” Go fishing indeed. Or whatever else takes your fancy.
    Thanks for sharing this.
    I’ll try to visit more often. One day at a time. 😉👍🏻

    Liked by 1 person

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