In September of 2011 I was surprised to learn that I had developed cancer of the prostate. All indications pointed to a very small and localized cancer on a corner of my prostate. My urologist and I discussed the options... surgery or radiation or watch and wait. Watch and wait wasn't an option. She said it would kill me within 6 years. That left surgery or radiation. I did my homework and opted for radiation since it was considered a cure. I needed to be cured. With my lungs in the shape they are in due to hereditary lung disease, I have to be cancer free for at least 5 years in order to get a lung transplant. At the first of the year, my PSA was 0.8. Dr. Sinha said that it was normal for the numbers to fluctuate for the first year after the radiation was completed. What she didn't tell me was that if it went up for 3 consecutive tests in a logarithmic fashion ... 0.9 to 1.7 in 6 months and to 2.5 in 3 months. Apparently cancers are counted in terms of doubling time. How long does it take for the cancer cells to double. As you can see, mine are busy little sonsofbitches.
When I opted for the radiation as the treatment of choice it was because it promised a cure while at the same time being the least damaging to the entertainment center as well as the sewage treatment center nerves located in that region. As far as I was concerned it was the best possible choice. Apparently, however, it appears to have been a poor choice.
With the cancer back, I now am faced with having to have surgery on a body part that resembles a over cooked Swedish meatball where all of the nerves and tunnels have been mushed together. Before radiation therapy, I could have had surgery on an anatomically normal prostate with potentially few or no problems "down there" post op. Now, however, the story is very much changed. It appears that there is little or no chance that anything will ever be the same as far as the waste processing or the fun rides at "HappyLand" are concerned. Both are doomed to become issues for me in the years to come.
Did I mention that all I wanted to do was to get to be cancer free so I could live the rest of my life with my wife who has had a double lung transplant after getting my own?
Until I can get clear of the cancer, I can not have the transplant. Unless I get the transplant I will not be able to join my wife in the life we had planned on enjoying together.
This cancer makes me angry. I am angry at the cancer. I am angry at the doctors who took aim at my prostate with the million dollar radiation machine and missed. I am angry at my Urologist for not telling me that this radiation treatment path could be a big mistake. I didn't know that 30% of those who opt for radiation have recurrent cancer. I'm also angry to find out only now that my Urologist does not want to do surgery on me because she is afraid that she might not be able to extubate me after surgery. It seems to me that it would have been nice of her to tell me of her bias before letting me decide to go for radiation. To now say I'm too high risk is somewhat disingenuous if you ask me. I'm angry. I'll admit it. Damn it I'm angry.
This was supposed to be over and done with and it isn't. I watched my dad die from a mix of COPD and prostate cancer. It was not pretty. He was 74 and a shell of his former self. A shell.
I intend to keep on fighting. I have an appointment on the 31st with the IU medical center in Indianapolis and I've already called the transplant center at Methodist to alert them to the kink in my plan for transplant. I've been told that being cancer free is the goal and even though the rule is 5 years free prior to transplant, I may be allowed to count the past 2 years toward that. In the meantime I'm finding myself rushing headlong into the oblivion of neuter hood. Dr. Sinha's last gift to me was her assurance that she has some patients on hormone therapy that survive 5 to 10 years out. Since she wasn't willing to do surgery, this was her best 'advice'. I'm 57. Screw her.
Back in 2001 I was evaluated for a lung transplant at Methodist hospital in Indianapolis. As part of that evaluation, the transplant surgeon sat across from me and said... "You know John, only 50% are still alive after 5 years."
I said, "I know and you know what? After 5 years, 50% are still alive!".
He said, "I like the way you think."
I'd like to think I still have the right thinking going on. Before the end of the year... I will be cancer free. I will be ready for my new lungs and I will no longer be the man I was born as and yet I will praise God every day for every breath He allows me to take. I will continue to engage in pulmonary rehab. I will keep taking care of my loving wife and never consider for a moment that she won't take great care of me.
It's hard to not post some bawdy joke of how I'd love to get to sleep with as many women as I possibly can between now and the surgery... but that is not who I am... in fact... it's not who I ever was. I married my first wife out of a misplaced sense of commitment to a bipolar woman who was determined to graduate Purdue with a husband. She did. Me.
My second marriage was to an opposite to my first. She was mildly autistic and had a high functioning autistic son to boot. To paraphrase Billy Joel, I go to extremes.
Ironically, only last year did I marry the love of my life... an alpha-1 friend of 14 years who has been there for me for many of my best and worst days. My best friend. Carole and I are together as we head into these final chapters of our lives. She is 10 years post double lung transplant and now in need of a kidney transplant caused by the damage of 10 years of caustic anti-rejection drugs on her kidneys. God only knows how long these future chapters will be but I can assure you they will be the sweetest... the best and most honest and loving of any chapter I've lived to date.
Stick around. It's beginning to get very, very interesting.
May God bless us all with His peace as we head into the future unsure of what that will hold for any of us.
