Live Like you are dying.
This song by Tim McGraw has a lot of meaning to me for many reasons.
In 1999 Elizabeth and I met and started our journey together. She was 33 with 3 children, I was 58 . How we met is another story. I decided if I wanted her in my life, I had to take everything that came with her, again another story.
I tell this story for no other reason than to let men know they have choices and the medical profession isn't always right.
In 1999 I had a PSA (Prostate specific androgen) blood test and the result was 5.3. Any value over 4.9 is considered suspect for cancer. An ultrasound was performed and a prostate biopsy was recommended.
Nothing was found on the ultra sound and the digital exam was inconclusive.
So in my reasoning a biopsy would be fruitless and unnecessary, because I was not willing to accept any of the treatments they had offered. So why let them stick at least nine needles through my intestinal wall into my prostate, hoping they could hit the cancer, none of this could be good.
I expressed to the urologist that the quality of life was more important to me than quantity, he kind of went off on how dying from prostate cancer is awful blah , blah blah.
Elizabeth and I concluded that a watch and wait was my best option. I had asked her if she wanted a grouchy old man or a sexually active happy old man, she chose the latter.
Approximately 5 years later I had a PSA test again it came back at 7.5 or so. We came to the same conclusion. Then in October 2009 another PSA test the level was over 40. I then consented to a biopsy. Of course the biopsy was positive with moderate Gleason scores. Liz and I knew we would get to this point, again radical prostatectomy was out, radiation and Hormone deprivation therapy was all that was available, again rejected.
Here is why - news-medical.net/news/2008/...
We then decided to see Integrated Medicine and Nutrition in White plain, NY. Dr. Wald, through a series of blood tests and examinations, came to the following conclusions, I was diabetic, hypothyroid and had metabolic syndrome. Dr. Wald’s exact words, “If we don’t fix these problems, your heart will explode way before the cancer gets you”. Needless to say the cancer was still low on the radar.
After losing about 60 pounds and multiple infusions of vitamin C, retiring, moving back to Washington in July of 2010, my diabetes was stabilized. I found a Dr. in Seattle to continue the infusions and nutritional support. PSA doubling times where kept at good levels and blood sugar levels remained good and where dropping.
Keep in mind I had no symptoms and was very sexually active through all of this time.
Around January 2012 I started having symptoms, ED and Urination issues, incontinence and high frequency of urination. I was also feeling lethargic. PSA levels where in the 150 range.
After battling these symptoms for a while, I had to coordinate my own health care. I went to a GP and told him my diabetes was out of control and I had to talk him into giving me an A-IC test which test average sugar levels. The test came back over 10 which is very high. “Yes you are diabetic” he says. Of course he knows about the prostate cancer and is sure all of my symptoms were caused by the cancer. PSA levels very high now around 330. He continues to focus on the cancer. He does give me some medicine to help with the diabetes.
I also finally get in to see the urologist, after having to get a recommendation from my primary care physician. The Primary Physician didn't even remember me from the previous visit about Diabetes and said to me; “nice to meet you” he obviously had not reviewed my chart as he never inquired about the diabetes. I now have a new primary and he follows all my health issues and manages my diabetes
During this time things are getting worse, however my blood sugar levels start coming down. A cat scan and bone scan where performed. The bone scan was negative the CAT scan showed cancer on one of the ureters and invading the bladder. Again we knew we would get here none the less the news hits you deep inside and you go through all of the stages of sadness, anger and worrying. The time is never right for this to happen. The urologist says, “Well whatever you have been doing didn't work”, I looked at him and said, “How can you decide that, I have had over 12 years of a good life with cancer.” He responded, “I guess your right the jury is out on the treatments available”.
The urologist immediately schedules to have stints put in to my ureters and perhaps scrape some of the cancer from my bladder. Again red flags go up. You do not have to believe everything these doctors tell you, they will always error on the side of caution. I take my test results to Virginia Mason and another urologist. He confirms the diagnosis but also agrees with me before any invasive procedures are done we should see how the treatment works first. My urologist was glad I had sought a second opinion and agreed to the treatment.
I finally agree to the hormone deprivation therapy, not without emotional stress from the thought of being chemically castrated. The forty year old drug Lupron which requires some other drugs to keep testosterone levels at 0 is all they had to offer before now. Hormone androgen deprivation therapy is designed to bring testosterone levels to zero, as most prostate cancer feeds on this hormone. The side effects are hot flashes, loss of libido, bone density loss, extreme fatigue, depression and emotional sadness and diabetes. Go figure.
A new drug Firmagon was approved in 2010 and approved only after Lupron quit working. However my urologist decided to go off label and start me on the Firmagon. All the side effects are the same; however Firmagon needs no other drugs to help it do the job, at least not yet.
I have been on the treatment since July 2012, the hot flashes are tolerable and the emotional roller coaster has been quite a ride. I tried a couple of different anti-depressants all they did where to piss me off. Liz has had to ride these ups and downs with me and so far stayed on the track with me. Believe me this has not been easy for either of us.
Well, the drug has my cancer in remission and within a month of treatment start, all my symptoms have disappeared. Our sex drive has taken a hit but not totally, I still have desires and libido, which the doctor says is a miracle as none of his patients have any desire at all. Of course I am not his usual sheep like patient. So up until now I have avoided any of the things that go with conventional treatment, total incontinence, total loss of sexual function, loss of orgasm and believe it or not, with a removal of the prostate, the length of the penis is shortened. You hardly see that anywhere in the literature. Nerve sparing robotic blah, blah, blah and radiation all still have these side effects.
Basically my treatment is a form of chemical castration; I receive an injection every 28 days. The psychological toll on me is great as I am a very sexual being. Performance anxiety is the single biggest problem I face. The loss of part or all of this part of my life was worse than the thought of dying. Facing death causes other emotional issue, “I don’t want to leave yet “and will all my loved ones be all right? How will she keep everything we have” and on and on. Chances are good I can get off of the drug after the June injection.
WE HAVE NO REGRETS.
I believe Liz and I chose the correct path and living with cancer is not easy at best. But it can be done if you weigh all of your options and research everything. Do not trust your doctor to be always right nor to tell you all of the possible side effects. I know once you hear cancer, you want it out, and this is a knee jerk reaction, especially with prostate cancer which is usually slow growing. None of the treatments prove cure, they use 5 years of 0 PSA as a cure. Well in most cases it returns in 10 years and I would be where I am now, accept, for all those years I would have had all the side effects of surgery, radiation and hormone therapy.
This is my opinion and the result of our choices only, you have to make your own decisions, but study all of your options and don't take one doctor's word for it, they are only human.
In conclusion, sometimes but not always, the cure is worse than the disease, learning to live with cancer is difficult at best but not impossible. Worrying and being cognizant of every change in your body or new pain causes anxiety. Extending life is not my primary goal. Quality of life, to remain living, doing and loving as long as I can, that is my goal.
Elizabeth, Thank you for the incredible journey and support through all of these life changing events. I hope for many more years of this roller coaster ride we are riding.
Update: 02/20/2017
Firmagon stopped working, PSA still going up, Urologist turned me over to the oncologist.
The oncologist switched to Lupron and Casodex after three months PSA rising now at 40.
A trip to the emergency room for swelling in my right leg and groin. Having to rule out blood clots a sone gram and cart scan where done. CAT scan showed swelling of the lymph nodes causing lymph edema.
My oncologist had prescribed Xtandi, very expensive drug. Since I switched my coverage from Medicare part d to VA coverage the approval has taken over a week. We have the tentative approval now, however on a three day weekend it's impossible to move forward.
The emotional ride between anxiety, depression and not knowing is taking it's toll. Knowing that we were going to get to this point, doesn't make it any easier to accept.
Good wishes for something else to help this next part of your journey. 
New here...
New "aggressive cancer" diagnosis 
Has anyone had metastatic prostate cancer and had surgery?
PSA went from undetectable to 0.2 7 years after prostate removed
You are not alone
