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Coping With The Six Letter Word – Cancer (Part 2)

September 25, 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?

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

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  1. Cancer and it’s treatments… It is a tough journey.
    A patient once told me how he fought recurring cancers with surgeries followed by chemotherapy and radiation over a period of thirty years. Stay strong, stay safe! πŸ’ͺπŸ™πŸ™πŸ™πŸ’

    Liked by 1 person

  2. Timothy Price permalink

    Hang in there. It’s a rough ride, but the treatments and out comes are often amazing these days. The shock of the cost of cancer. Remember the Six-Million Dollar Man? I share two commonalities with Lee Majors: the price tag in the title of the show, and we are both still alive.

    Liked by 2 people

  3. Good luck. Cancer is a nasty disease.

    Liked by 1 person

  4. Good luck. Sorry to read your post but keep with the positive attitude.

    Liked by 1 person

  5. Wishing you the best, Allen, as you continue your treatments.

    Liked by 1 person

  6. Please stay strong!

    Liked by 1 person

  7. The fight against this disease is often difficult. I speak knowingly. I fought for several years: there were ups and downs, operations, radiotherapy, brachytherapy and treatments but today I see the end of the tunnel. I still have a cure but the controls are good.
    I encourage you to always keep your spirits up, this is important.
    Stay strong, Allen

    Liked by 2 people

  8. That is a tough thing to go through, Allen. Sorry to hear you have to have so much treatment and hope it provides the best of outcomes. Yes, attitude can make a difference but staying positive is hardly easy when you feel like crap! Sending kind wishes for a full recovery.

    Liked by 1 person

  9. Thinking of you, Allen. Your honesty about the details could be helpful for readers. We’re hoping the best for you!

    Liked by 1 person

  10. KiM permalink

    Wow, Allen that sucks! I could tell you about all the people I know who cancer has touched, but I won’t. I will say that I hate that anyone has to go through it and I can’t believe they haven’t been able to find a cure yet! Can you go back and choose removal or did radiation takes that choice away for later? You’re right a positive attitude goes a long way but so does knowledge and no one said a positive attitude didn’t include some days where your just… not. I obviously didn’t see your original post or I would’ve added you, your wife, and doctors/nurses to my prayers.

    Liked by 1 person

    • KiM permalink

      I wanted to address your first doctor too. My dad had a doctor that did nothing also. Kept saying it was repetitive bronchitis or pneumonia on a health nut who was never sick and had lost a significant amount of weight. When my dad finally went to a new doctor who ordered a simple $40 chest x-ray and we learned his first doctor was a moron. I think he’s still practicing Brevard. I always said I was going to go confront him one day and ask what about ‘first do no harm’? Good for you for asking for a referral.

      Liked by 1 person

    • Thanks Kim. I’m hanging in there.


  11. My best to you, Allen.

    Liked by 1 person

  12. Never an easy journey on any front – keep up the good fight – retreat into sitting with the stuff that comes up when you struggle (it’s HARD to keep up your ‘chin, cuz that gravel gets rough!” when so much of your energy is going towards healing/recovering from ‘treatments’ to save your life.) – Just a note to say, I sure as heck don’t expect ya to be cheery and optimistic every day! LOL But…. well, for now, it is what it is, best wishes for full recovery and may the good days, the healing days, the up days, start to come more often than the hard days, the struggling days, the down days!

    Liked by 1 person

  13. Good luck, but keep fighting, you will make it once more. Take care of yourself.

    Liked by 2 people

  14. Thanks for sharing your experience and keep fighting with your positive attitude.

    Liked by 2 people

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