I am a cancer survivor!
For a little background, this is the “short” version of my journey so far. It’s not intended as a woe-is-me story, just a recap of the details and events:
Back in August of 1999, while many folks were worried about Y2K, I was diagnosed with Prostate Cancer.
We’d been watching my PSA (Prostate Specific Antigens, a substance produced by the prostate gland) numbers increase for more than a year—an indicator of a problem. My doctor assured us it probably wasn’t cancer, since I was in my 40s, and most men don’t get it until later in life.
“It’s a one-in-million,” he told us.
But alas, it seem I am THAT special; a biopsy confirmed the cancer.
(I would have much preferred to use my one-in-a-million status to win the Lotto!)
We did radical surgery, then seven (brutal) weeks of daily radiation treatments.
I was cancer free for 13+ years, then the PSA numbers began to increase. (If I don’t have a prostate, I’m not supposed to have the antigens.)
We “watched” it for about a year as the numbers notably increased.
But it was clear: the cancer had returned.
The doctor recommended I begin a hormone suppression protocol, designed to stop my body’s production of testosterone, which “feeds” the cancer.
I was told when we began the injections, it would be like going into menopause…times ten.
They provided a list of possible, as well as unlikely, side effects:
- Bone and joint pain
- Digestive problems
- Mood swings
- Hot flashes
- Night Sweats
- Weight gain
- Decrease in libido
- Groin pain
- Memory and cognitive issues
- Enlarged, sore breasts
And then there was a small list of “if these occur, consult your doctor” side effects.
Yeah, I had almost all of them!
(My doctor joked that I was the poster child of side effects for this drug!)
I was on the protocol for nearly three years.
My PSA numbers were pushed back down to negligible, as well as my testosterone levels.
Personal Note: During this time, I read an article by a man who complained of being in “hormone hell” because his t-levels were 180. (Normal testosterone level is 280 to 1,100 nanograms.)
Mine were less than twenty.
I wanted to scream: “STFU!”
If 180 is “hormone hell,” I was apparently testing the depths of Dante’s infernal levels!
While the injections were “managing” the cancer, the side effects were debilitating, and took a toll on my life.
I gained nearly 80 pounds, and had trouble walking. I fell several times, and had to use a cane for balance and support.
I was still working full time…50-60 hours a week…at a high-demand, fast-paced job in PR and Communication for a large national company. But my energy level and my cognitive issues began hindering my performance. (I had trouble thinking and writing.) By the time I’d get home after work, I barely had the energy to eat, and then would go to bed. (Not that I was sleeping much!)
One day, going home from work on my usual route, I got disoriented. I honestly didn’t know where I was and couldn’t remember how to get home. When it happened again a few weeks later, my partner (now husband) and my doctor strongly suggested that I take a disability leave from work.
It was the logical...but difficult...choice.
Skip to November, 2016.
My life had shrunk to the house, and occasional short trips. I was discouraged from driving, due to my cognitive problems. Venturing outside was painful, and had to be planned for required stops and unexpected bouts of nausea.
My oncologist and I decided to suspend the treatments, and give my body a rest and recover.
I began to feel so much better almost immediately.
We expected to the PSA numbers to rise, and they did.
But I was in no hurry to resume the treatments!
That brings us to the present.
(I’ve written extensively about my cancer journey. Those posts can be found in the Cancer Resource section on my website.)
For the past few months, I've experienced increased (significant) pain in my back and legs. My oncologist recommended a bone scan.
The results were…unexpected.
(Not in a “I just got a hug from Matt Bomer” kind of way.)
Some "hot spots" (my doctor's term) were showing up in my pelvis and rib cage.
These are early indications of metastasis.
The doctor says I need to begin hormone suppression treatments again, but recommends using a new medication.
It’s a daily pill instead of injections (I like that!); he thinks the side effects won’t be as severe for me.
(I like that even more!)
But the meds are very (VERY!!) expensive.
I mean, one month…30 pills…is nearly $3,000.
And that’s after the insurance takes it down from $12,000. (Insane and immoral!)
Obviously, we aren’t rich, and can’t afford that.
Thankfully, the cancer center where my doctor works has a patient representative who works to get assistance.
We tried to go through the drug manufacturer, but we make too much money to qualify.
(We are not rich, trust me!!)
He said that if we can’t get assistance, I’d have to go back to the injections.
I wasn’t sure I was ready to endure that…again.
(That was the day I spent crying alone at the house!)
But a few weeks ago, we got some Good News. (No, still not a hug from Matt Bomer.)
The patient rep was able to find a foundation, and I got a grant that will pay for the treatments for at least the first year.
At the end of that period, if there are funds, we can re-apply.
Personal Note: I’m truly grateful, of course, but it does make me wonder: Why in the hell do people in this country need a grant for life-saving medication?
(My answer: it’s a side effect of our for-profit healthcare and a Political Party owned by them!)
So, I begin the new protocol in May, after my husband and I get back from a trip we have scheduled for his 60th birthday and our 20th anniversary.
(I didn't want to start before that, because if there are side effects, I'd feel like shi---uhm...I'd feel horrible.)
After the test results came back, I spent the first week essentially in sadness, and denial.
I took my cue from that great prophet (Scarlett O’Hara), who taught us: “I'll think about that tomorrow.”
But now, I’m mentally, emotionally and emotionally preparing myself.
In the Christian Church, we’re in the Lenten season, which focuses on reflection and preparation. We remember the suffering and struggle of Christ that leads to Easter Sunday, and His victory over death.
On “Good Friday,” the disciples were devastated that their plans…their expectations…had been destroyed.
This was not how they thought things would turn out.
Then…on "Easter Sunday"…they found a displaced stone, and an empty grave.
Defeat is transitory.
Attempting to confine and restrain Love is futile.
Light will not be overcome by darkness.
Hope will burst forth.
I’m not sure what happens next (Are we ever?), but I will rely on my faith, my family and my friends.
I’ll focus on the message of Lent, and the promise of Easter, as comfort and strength.
Life doesn’t always work out the way we planned.
We find ourselves in the darkness of doubt and defeat.
We feel abandoned.
“This is not how I thought things would turn out.”
But that's not the end of the story.
So the fight begins…again.
<cue the Rocky theme song>
Thanks so much for your ongoing prayers, good thoughts, words of encouragement and positive energy.
They are appreciated.
I am…will be…a cancer survivor!
Oh…and Cancer Sucks!