... quality versus quantity - the other "Q" word

As stated in other blogs, I was raised to expect to have cancer in my lifetime. And probably not live  that long. Which is probably why I am in my financial mess because I expected to be dead by now. As per my parent's thoughts on the matter - my death by cancer (liver / testicular / prostate / melanoma)  or  me being murdered - incarcerated - homeless (all due to being a gay man). It was not a supportive family. They finally accepted me late in their lives, just before they had to receive judgment by St. Peter at the Pearly Gates. A little too little - a little too late for redemption.

.....

 When I was first diagnosed with prostate cancer the immediate response was "Get it out! Get it out! Get it out!" And once I got my breath back, I started to question the test results.
I did research on what my best options would be even though I had already signed on for a radical prostatectomy in about 4 weeks after diagnosis.

I was told by the doctor that 50% of the gland was cancerous (it was only 5% as per the pathology report after the surgery). Location of the cancer is an important factor. A main aspect was whether or not it was contained within the prostate gland or already escaped and metastized, ready to find a new home (usually the bones) to wreck havoc.
On one side of the gland a bunch of little cancer clusters were growing. And on the other lobe, a larger clump was near the edge, ready to jump ship. 


With the operation date quickly approaching I sought out support and found very little of it. The local support groups were mostly conservative older men (in their 70's) with prostate issues, incontinence, and wives. As a gay man with a platonic male husband, we certainly did not fit it. Even on the internet, support for gay men and their issues seemed to be restricted to closet-case bisexuals who were only interested in being able to perform as before with their boyfriends behind their wives' back. They were not concerned about other health issues other than the sex act.

 .....

When the dust has settled and the wounds have healed, what are you left with. It's hard to tell at times what remains of the old you.

It took about 16 weeks to finally start getting control of my bladder, so I could feel part human again. Not as in infant in a guard or diaper, or being the old bedridden man waiting for the nurse to change the bedding due to an accident.
Prior to that moment, I would lose all the fluid in my bladder simply by standing up.  Even with a heavy duty pee pad, I would often have to change my clothing in a public washroom (extra pants, pad and underwear in a carry bag). I was at the point of ordering an external catheter when the start of controlling my incontinence finally kicked in.

In my twenties and thirties I was proud of my sexuality and constantly trying to prove my masculinity to myself and would enjoy intimacy with others. It made me feel male.
In the 40's things were fine but my interests were changing  and by the time the fifties hit, there were difficulties on the intimacy homefront. Some of that was probably due to the decline of the prostate as it ages, complicated by decline in the relationship with my husband/spouse.
I was aware that the prostate cancer surgery would affect a change in appearance of my manhood.  But not to the extent of the results. It was a truly emasculating event with what happened. As per my research, I found out that "use it or lose it" is a very true and honest phrase that has to be heeded if you want to have any sense of pride of sexual self. That devastating effect is often made worse if the person has to later on undergo salvage radiation treatment.
What I ended up with was being an impotent, non-ejaculating, non-climaxing, small manhood of a person. And for a gay man who's society gauges most of their existence on physical appearance, prowess, and performance - I was striking out in all categories. I did not exist as a gay male.

 .....

Was it worth the battle?

Five years after the fact and I am still here. I have gone through depression, fear, anger, dealt with  suicidal thoughts and even guilt and pity. The silliest one was pity. What did I do to deserve this. Did I have too much sex. Too little sex. My diet. My religion. My faith or lack of faith in believing I would have a long life. Just before my diagnosis I would have a reoccurring dream in which I would tell my husband/spouse, "Hey Steve! You won the lottery!" ... and when diagnosed that is what I thought. He won the lottery. I was going to die on the operating table (bring in the lawyers) and he would be able to pay his bills from my insurance. Well, that didn't happen. I am still here. I still have bills. And I don't remember if I have our lawyer's phone number anymore.

 .....

What was lost and what was won.

The driving force of my internal clock that pushed me time and time again to prove myself. To try to better myself, to be the person I thought I wanted to be got lost. Or maybe it was never there and just an illusion. Anger and despression was still there. That was not cut out. Being tied to finding out the location of roadside coffee shops or restaurants just to be able to use their washrooms so I don't have an accident and leak, is demeaning. The frustration of seeing people you were once attracted to (and them you) being out of reach since nothing of your intimate side works again and you have nothing to offer. It even felt useless and fake to even try to flirt. What was the point.

 .....

Is the "new normal" acceptable or just accepted. You have no other choice now.
I guess I just accept it. The adventures of the past seem like distant memories now. I am coping with my incontinence and trying to remember to do my kegel exercises to maintain the muscles down there. I am accepting the various sides of my personality - the masculine and feminine. I don't have anything to prove anymore. I am doing my best trying to just be me.

 .....

Is the "new you" better off than the "old you" (pre-treatment).

How do you balance off the aspect of simple existence. You did not become radioactive due to the treatments and turn into The Hulk™ every time you stub your toe. What was needed to be done was done.

You did not change your gender due to the medicine to reduce your testosterone which could have fed your cancer. The internal changes and acceptance of self opened up a new world to explore.

You did not stop loving your spouse because you could not have sex the way you used to. In a manner of speaking the relationship became more honest and open.
You did not become lesser of a man even though your manhood was reduced in size by treatment. There was a change in what was important in life. And what was not.

You did not embrace death but faced it.

You did not conquer death but postponed it, a little bit longer, so you could embrace life and its wonderful mystery of existence.

.....

.....

... on having to wait - the "W" word

"... on having to wait - the "W" word"

 ©2015 Bronson Smith 

Wait.
To wait.
Have waited.
Am waiting.
It was worth waiting for.
The wait is over.
I waited fifteen minutes and I left.

This was a six month wait. All in a series of a waiting game to find out if my cancer had returned. Am I in remission. Is the cancer dead, or just sleeping. Is it back and am I on that damned roller coaster called prostate cancer again.

I grew up being told by my Mother that I was cancer-prone. From childhood, I was reminded time and time again that I was prone to skin cancer, testicular cancer, liver cancer. All fun diseases for a child to hear about and wait for to happen.

As an adult, I smoked (being cool was more important - I now have COPD), had unprotected sex (before we knew about protected / safer sex - and I dodged that bullet and am negative), never really drank (so liver and driving record were clean).
Father had prostate cancer (in his 70’s) but died of parkinsons. Grandpa (in his 70’s) had prostate cancer and died of a heart attack. I expected to have prostate cancer but die of something else.

I had missed a couple of years of annual medical examinations and blood work, including PSA testing.  And the feared (not to me) gloved finger up the butt to check for changes to the size and shape of the prostate. So when an after-hours telephone call came from my doctor in Toronto, I knew something was up. He told me he was worried about my PSA numbers which had increased from 1.68 in September 7, 2007 to 3.86 in October 9, 2009. A basic rule of thumb for PSA levels at that time was - 1-4 - safe; 4-6- wait and watch and 6-10 - get your butt into the hospital now.

I found an Urologist through the local hospital, PRHC. I didn’t have to wait long, since a week later, I was prepped for a biopsy since in his manual digital examination, the doctor found a change in shape and hardness to my prostate. The results for the biopsy were fast. Cancer was found on both lobes - 2/12 sites - 5% of the gland was affected with cancer of a Gleason level 7 ( 3 +4). That ain’t good.

Gleason levels describe the destruction of the normal cells into cancer cells, and in my case - the majority were level 3 - average/slow growing with a smattering of gleason 4 - faster and more dangerous. The higher the number, that faster and worse it is.

Like a whirlwind romance, I was scheduled for a radical prostatectomy (they remove the gland surgically) on November 18 - a mere 4 weeks wait from the diagnosis of cancer. Some men wait up to 6 months for surgery. Some opt for no surgery at all and while others try different routes to kill or slow down the cancer.

The surgery was classed as successful and I was sent home after 3 days in hospital. The result was Gleason 7 - pt3a - fast but nothing outside the prostate - but cancerous cells near the outside of the gland may have been left behind. Cancer cells that could die off (short half life) or lie dormant for years. You would just have to wait.

And that is what I did. For the first year. the PSA blood work testing was every 3 months. The second year, every 6 months with the third year graduating to once a year. It looked like clear sailing ahead.

Too bad no one told the cancer.

Even with knowing I was in remission there was the painful anxiety of waiting to see if your life was going to continue on the road to recovery. Getting over prostate cancer surgery is no picnic - physically, emotionally and sexually. Was it going to descend into a roller coaster of events with more testing, more dialogues on what to do with the diagnosis. What to do with your life, your work, your loved ones.

You just had to wait. To see if you responded to treatment. If you could tolerate the medicines that (for some) stopped testosterone production that feeds the cancer cells. Charting the progression of the cancer to different rates of growth, finding where the cancer pops up next.

I was very lucky with that in mind. They did an MRI that outlined the prostate bed (former home area to the prostate) and designed the 7 weeks of radiation treatment to bombard the area to kill the remaining cancer cells. No buckshot hitting everything in site mentality that used to exist in radiation therapy. My Mother and my Uncle, her brother, were badly burned by radiation treatments and it scared the life out of me. I had the benefit of an online group - GFMPH - that helped me get through it.

Each day for those 33 days, I went through the same routine - got dressed - went to hospital - waited to get zapped ( which had to be done with a full bladder - I could only hold it for about 15 minutes, so water consumption was carefully timed) - waited while the machine did it thing - whirling and humming and numerous other sci-fi movies sounds. It wasn’t scary, but you were scared. Was this going to work. Will this make me better. Can I get on with my life, and what quality of life will I have.

Recovery from radiation treatments is a different waiting game than with surgery. This time around, cells were affected - sometimes millions of them all reacting different ways. One day, your bladder would be out of control and you’d had leaking accidents, while other days, you could be classified as a camel - holding onto your water until it was the right time to relieve yourself. The same with bowel movements.
There is scarring and burns to the area where tissue was destroyed by the radiation. That is the purpose of it.  So as said before, you have good days and you have bad days. You do your best to forget the bad days and hope for more of the good ones as time progresses.

And with that you wait. For the next PSA test. To see if you beat the monster - cancer. If all the pain and suffering and changes to your quality of life was worth it.
You wait. For three months. Then the test - a simple needle prick and blood drawn into a vial with your name on it.

And with that you wait.

I discovered, if the right box is checked, I can get the results back in three days. Otherwise, I have to wait two weeks to visit the doctor. Wait at least a half-hour from your appointment time to chat with him. And in a matter of minutes, you discover if the cancer is going, going, gone…. or if they misjudged the target and you are back on the roller coaster.

The monster was gone - undetectable. I scored a “zero” - PSA <0.10 (there is no such thing as an absolute zero). My number was in fact PSA <0.010 - the lowest you can go.

And then I had to wait. For the next test in three months.

And even though I was hopeful, the anxiety was there. You wait for the test. You wait for the result.

The monster was gone - undetectable- still. I scored a “zero” - PSA <0.10 (there is no such thing as an absolute zero). Once again my number was PSA <0.010 - the lowest you can go.

And then I had to wait. For the next test in six months this time.

I worked through my good and bad days. Questioning quality-of-life versus quantity-of-life. I could now understand the rationale of some of the men I chatted with who chose not to have any treatment. To live out their remaining years intact (prostate cancer is usually slow acting and men can live about 10 years before the serious side effects of cancer takes over).
But from a sample of the men who had advanced cancer and shared their life stories, one thing was certain, “you don’t want to have bone cancer. It is a painful way to die.”

So I continue to fight. To be an advocate for testing. To live since, as a dear friend on the online support group Healingwell.com stated, “every day is a bonus.”

Even though you have to wait.

And my six months was up. I did the blood work two weeks ago. And waited for the appointment date - today. Went to the hospital and waited for the doctor to come in (appointment at 9:45 am) and tell me the results.

It was only a 20-minute wait this time. I was still in remission. I was still a “zero” - my PSA was <0.010. He reminded me if this keeps up, he will discharge me as a patient in five years.

That will be worth the wait.