Section 2

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Nine Months To Live!

Finally the day of the meeting came and we arrived armed with all the questions we wanted to ask.

The doctor reviewed my results and presented a course of treatment that included a schedule of 40 sRBT radiation treatments combined with a series of Hormone Replacement Therapy injections over three years.

One of my questions was, would the removal of the prostate be an option for me? I had heard that a radical prostatectomy which removes the entire prostate was a procedure that works very well for eliminating cancer. 

However, one of my biggest fears was the possibility of any negative impacts of having my prostate removed. I was told that prostate removal surgery was not an option for me because I was too high of a risk due to the strokes I had previously. In a way, that was actually a relief. 

I asked about any other potential negative outcomes and he answered all my concerns. Finally I asked what my chances of survival were if I refused all treatments? The doctor then looked at me and explained that if I did not address the cancer now, I would either be dead, or be very close to it in roughly nine months time! He said that my cancer was considered very aggressive, but so far it was contained to the prostate and had not metastasized to the lymph nodes, bladder, or bones. 

I then asked about my chances of survival if I did follow his recommended path of treatment. He told us that if I had a 70% chance of being cancer free in five years. 

Later I noted the significance of the date of that November 17th meeting. As it happens, nine months to the day is August 17th, the birthdate of my eldest granddaughter!  I knew I couldn’t die on or before her birthday.

We decided to proceed with treatment and as I write this, I have lived over four years since that day! It was definitely the right choice! 

One of the pre-radiation requirements was that I had to have a small tattoo on my stomach indicating where they were going to target the radiation beam towards the exact spot on my prostate. Simple enough and necessary to make sure that they were radiating the actual area of cancer and not any nearby organs.

When my granddaughters heard I had gotten a tattoo, they wanted to see it of course. Before I lifted my shirt I told them that it was a tattoo of a Harley Davidson motorcycle which got them very excited, making their Grandpa a cool old dude for a very brief moment… until they saw that it was just a tiny black dot. I could see in their eyes they were disappointed, so I explained that it was a very, very small motorcycle, about the size that a baby flea would ride! Well I thought it was funny!

The radiation treatments began and all was going well with no serious issues of concern. The daily routine before each session required me to drink 400 ml (14 ounces) of water one hour prior to arriving at my radiation appointment. I also had to empty my bowels before every session. That is not as simple as it sounds. Most of the time it was easy enough to do, but timing was important because they scanned the bladder and bowels before starting the radiation to make sure they could proceed that day. Sometimes emptying my bowels was an issue and eventually they prescribed something to aid in the go.

Joining the One Percenter Club - A problem arises… 

No, I’m not talking about being one of the one percent of the population that are the mega-rich. 

I was a one percenter alright, in that I was about to experience something that apparently only happens to one out of a hundred prostate radiation cancer patients. 

At the 20th treatment I started to have excruciating pain in my rectum. Many things would trigger this pain, especially laughter, believe it or not. It felt like my rectum was full of broken glass producing excruciating pain that lasted for hours at a time. The only thing I could do was try to relax at home by sitting on a very cushy pillow and taking extra strength Tylenol for pain management. I was popping those things like jelly beans and counting down the minutes until I could have my next pill. This went on for months during and after my radiation treatments ended.

Just being a passenger in my own car was hell because every single bump on the road would result in extreme pain up through my body. I even began sitting on a couch cushion in the car to soften the vibration to lessen the shocking jolts of pain. 

When I informed my doctors, they were quite shocked that I was having this issue and experiencing that much pain. So much for joining the One Percent club. Lesson learned – be careful of what you wish for!

My doctors did prescribe additional meds, but honestly it didn’t provide a lot of relief. The pain eventually did subside, thankfully. I would later learn that this episode was just a prequel to what was in store for me six months later. 

After I completed my full round of radiation treatments, I had to begin my Hormone Replacement Therapy which is also known as ADT or Antigen Deprivation Therapy. 

ADT is something that a lot of guys really worry about. I’ve heard a lot of men are very afraid of the potential for weight gain, moodiness, hot flashes and the fact that hormone replacement therapy mimics a woman’s menopausal symptoms. 

I was prescribed an Eligard 45mg injection in my side every six months for the next three years.

Personally I had no serious issues with the injections. Sure I put on some weight and I was probably a bit moodier than normal, plus I also developed some pain in my left breast area, but other than that, it wasn’t as bad as I had heard.

There definitely was an increase in my emotions at times though. For example, Joyce and I were watching one of those Rom-Com movies with a bit of a sappy ending. As the movie was ending Joyce looked over at me and said, “Are you crying?” To which I replied, “No, you’re crying!”   

Prostate Cancer Is a Marathon, Not a Sprint

It took me time but eventually I learned to expect that there will be some bumps in the road from time to time. 

Some of these obstacles really shook my confidence that I was going to get better. There is no shortcut to dealing with times like those. I just had to try to power through the bad times. 

One of those so-called bumps cropped up a few months after I had completed my 40 rounds of sRBT radiation.

I had been having a reasonably good late summer and early fall and making progress. We have a tradition with some very good friends of ours where we each take turns hosting a formal dinner around Christmas. We’ve done this for many years. That Christmas, it was our friend’s turn to host us and because they live about 45 minutes away, we always stayed over for the night to avoid driving in the dark and any bad weather.

We had a wonderful evening and the next morning I could sense something wasn’t right. I won’t get into all the gory details, but I wasn’t passing urine through my catheter, I was passing black blood and a lot of it.

We drove to the local hospital ER and I was admitted while they tried to determine what was causing all the bleeding. 

One of the methods they tried was to flush my bladder with a solution of gallons of sterile water. When things finally started to run clear, I was released and advised to contact my own urologist ASAP. Unfortunately, before I could see my urologist the issue returned that evening and I was back in the ER again. I’m going to condense this part of the story but I’m sure you’ll understand when I say it wasn’t pretty. 

At one point I was given an emergency CT scan. While my urologist was attending to me in the ER, a nurse came in and handed him my results from the CT scan. My urologist Dr. T is a really jovial guy and that’s one of the things I really like about him. He is always smiling and joking around, which generally keeps patients like me calm.

When he looked at my scan results, his face turned a ghostly white and he immediately said, I’m taking you in for an emergency operation tonight! Well Dr. Jokey-jokey instantly turned into Dr. Serious, and that certainly didn’t make me any better!

I had the operation that night and he was good enough to call Joyce and advise her that he had sent off a small sample of my bladder that he removed during the procedure to pathology for testing. When he looked at the CT image it appeared like it could be cancer of the bladder, but thankfully it was not. 

Ultimately it was revealed that what Dr. T, saw on the scan was a cyst, but in addition to that, the radiation sessions had burned a hole in my bladder wall which was the source of the blood. During the operation he repaired the damaged area. Merry Christmas to me! 

Now I have to say that of all the medical issues I’ve been through over the past four years, this one was the worst. The sight of black clotting blood coming through my catheter was really scary. At one point I thought I was going to bleed to death! Fortunately it all worked out, but believe it or not, the drama was still not over yet.

When I was released after Dr. T’s emergency bladder operation, I was sent home with an indwelling catheter so that it would continually drain my bladder 24 hours a day and I was instructed to wear it for a month. 

The problem was that the catheter was extra large to make sure any remaining blood clots could drain. I had worn an indwelling catheter after my initial emergency bladder operation a few years earlier and it was not something I looked forward to repeating once more. The real problem was that sitting on any surface that was not very soft and padded was extremely painful due to the extra large catheter they inserted in me that felt like a garden hose entering my penis and going up to my bladder!

I was also instructed to restrict my movements as much as possible to allow my bladder to heal from the operation. I sat in a reclining chair for weeks in extreme pain, popping Extra Strength Tylenol again and trying not to move unless absolutely necessary! Not a fun start to that New Year!  

Fortunately I have recovered from that trauma to my body now.

Issues like this do crop up from time to time, but I try to stay positive and put them down as temporary issues that I have to get over.

That Man-genade that was tossed at me has the potential for all kinds of issues to pop up, but so far, none that I can’t power through!

Welcome to Stage Four Ken!

Sometimes I feel like an AM Radio DJ because the hits just keep on coming!

To date, I have been fighting Prostate Cancer for four years and things seemed to be going well for the past year. I had to go for a regular PSA test every three months to monitor my status. About a year ago my numbers started climbing, slowly at first. At my lowest point, my PSA registered at 0.032 which I thought I was cancer free, but my doctor explained that unless my number came in at 0.00, I still had cancer.

Through the year my PSA continued to rise after each test, to 1.2 then jumped to 6.2 and finally 8.2! I was getting concerned of course! 

I was then sent for a PET scan which is a highly accurate and detailed scan. The test is a bit like an MRI test, except I was injected with a radioactive dye that lights up in the scan, identifying any areas of cancer. The test showed a "spot" of cancer in my umbilical hernia. My understanding of a spot was clearly very different from what my doctors consider serious. To look further into this “spot” I was sent for another PSA test. My number had suddenly rocketed up to 199, yikes!

Up to this point I had been working with a radiologist oncologist, Dr. I, but based on my new numbers, I was referred to a medical oncologist, Dr. W who advised me that I was no longer Stage 3, I was now Stage 4 due to the cancer spreading outside of my prostate. 

In my mind the only good news I could take from this was that he described my new diagnosis as Stage 4 metastatic castration-resistant prostate cancer! The term Castration Resistant was the part that I focused on!

While at this initial consultation I had blood taken for another PSA test and prescribed a new daily cocktail of drugs which consisted of Abiraterone acetate and Prednisone to combat my skyrocketing PSA numbers. 

Leaving the appointment I was scheduled to have a bone scan and yet another PSA with full bloodwork two days prior to my next appointment in 30 days. 

I was able to view my PSA results online before my follow-up appointment and was very disappointed to learn that my PSA had only dropped two points to 197 from the previous 199 level. However, I was unaware that the bloodwork test that was taken during my last meeting showed that my PSA was actually 391, and not 199. This meant that in actuality the new meds lowered my number by almost half. That was a major bonus!

However there was another unexpected development that took place during my first month of Stage 4 as a reaction from the new medications, specifically the prednisone steroids.

As I mentioned, I have had to use a catheter five times a day for the past five years since my initial trip and fall accident which meant that for those five years I couldn’t pass a drop of urine naturally. I had to rely on a catheter only. 

Somehow, and all of a sudden I could pass urine without the need to catheter for the first time! Short of being cancer free, this was the best development I could ever wish for. 

I actually managed to go a full two full weeks without having to rely on a catheter once, which is something I could never have dreamed of!

Admittedly my urine flow was nothing like it was before my accident, but I could pass enough over a period of fifteen minutes so and I would happily live with that, which was infinitely better than having to rely on a catheter!

It was like a Christmas miracle came true, until  Dr. W shattered my optimism by informing me that the bone scan revealed that my kidneys were enlarged due to my inability to fully empty my bladder without the use of a catheter. The result was that I would have to return to using the catheter again or risk developing kidney disease which could require me to have dialysis in the future! With all my current issues, risking another life altering possibility was just not something I was willing to do, so back to the catheter I went.

Honestly, it almost felt like I had been awarded a free vacation to Hawaii and then at the very last minute the prize was snatched away from me by the Grinch himself! I was shattered!

Before I left that appointment with Dr. W whom I wanted to call Dr. Grinch, arranged an appointment for an ultrasound to check on my enlarged kidneys in a few weeks time.

In the meantime Joyce and I went on a long planned four night, five day cross country train trip. 

For anyone who has ever been on a long distance train ride, it can get very bumpy at times and inserting a catheter can be extremely difficult!  Just imagine trying to keep your balance as you use two hands to insert the catheter while you’re standing inside a cement mixer. As much as I tried to use the catheter there were a number of times when the task was impossible, so I had to resort to urinating naturally against Dr. Grinch’s advice. 

So after returning from our train trip, I went to my appointment at the ultrasound clinic. After the technician finished her scans she informed me that she had to check to make sure she had all the images correctly and I should wait in the room for her to return. 

Ten minutes later she enters the room with a very odd look on her face and tells me I have to see my medical oncologist, Dr. W (Also known as Dr. Grinch) "immediately". 

Hmmm, this seemed strange, but off I go to the reception desk of the cancer clinic. A moment later one of Dr. W’s nurses came to greet me and explained that I needed to have blood taken right away. She then tells me that there were some concerns about the ultrasound images and that I have to be admitted into the hospital for a couple of days! WHAT? As a new Stage 4 cancer patient, this did not sound good!

Later, another doctor came into the examination room and explained that my kidneys are now much larger and that the ultrasound showed that I also have a build up of fluid in my abdomen. Moments later he puts a needle or tap with a long tube attached to a collection bag into my side and proceeds to drain fluid out of me. An hour later, he had removed close to 3 litres (about 100 ounces).

of fluid out of my belly! 

Next I am transferred to the room where nurses then insert a catheter into me and over the next hour, drain a total of 1500 ml (50 ounces) of urine which is far more than I have ever drained before! Considering that my urologist once explained that my bladder normally holds 400 ml of urine, that was extreme!

During the next 12 hours, I managed to self-catheter another 1500 ml of urine for a total of 3 litres of abdominal fluid and 3 litres of urine removed from my body in less than 24 hours. According to one of the doctors, the total weight of all that fluid would be about 12 pounds! That is one fast weight loss program!

The doctor who removed my abdomen fluids confirmed that my attempts at trying to drain urine naturally was not emptying my bladder and the urine continued to back up into my kidneys all the time I was away on our train trip causing the massive fluid build up in my abdomen. The only good news out of all this was the blood tests showed that my kidneys were somehow still functioning properly!

I guess Dr. Grinch was right after all!

So now that my status of Stage For Prostate Cancer is confirmed, I'm not really sure what to expect from this point onwards.

I am not going to guess at what the average life expectancy for a Stage 4 Prostate Cancer patient is, but I have read dozens of accounts of men who have lived many years, which gives me hope for my future. 

Considering that I was once told that I would potentially die in nine months and that was four years later, I’m going to imagine that the odds are on my side!

So, there you have it. I have gone through a lot as you can see, much less than what many of you have had to deal with, and more than others. Brothers, we are all in the same boat dealing with this awful disease, and the end is not a foregone conclusion by any means. There are times where it is easy to think that we have no control, but I do not subscribe to that. I honestly believe that managing our own situations is one thing we can control, and I know that can make a huge and positive difference in moving forward.

A Parting Note

It was not my intention to frighten anyone by including details of my more serious medical issues and side effects. I did try to limit the gory details as much as  possible. I want to assure you that while these were certainly difficult experiences, they eventually subsided and are no longer an issue for me. 

There were times when circumstances in my cancer journey seemed overwhelming, but my unwavering belief that I would persevere gave me the strength to push onwards. 

So now that I have given you a small taste of what my journey has been, I would like to share the ways that make my everyday life the best it can be under the circumstances.