Live from My Cancer Soap Opera
In the past few weeks, as I’ve shared online about doctor visits, as well as complained about those days (and nights) of feeling sick, several folks have asked me for an update. I figured this might be the quickest way, though I acknowledge its impersonal nature.
Note: Throughout this “journey,” I’ve written about my personal experiences and shared my twisted observations.
Before we proceed, let me give the backstory. (That’s the writer’s term!)
My first cancer diagnosis came in 1999. Initially, because of my age, the doctor assured me I was too young.
So much for medical assumptions.
I had radical surgery to remove my prostate, but tests showed it had spread to surrounding areas, so that was followed by seven weeks of radiation.
I was cancer free for eleven years, then in 2010 we detected early signs of a return. (Diagnosis #2) We “watched” it for nearly two years; the cancer was there, but growing slowly.
Until it wasn’t.
So, the doctor put me on a treatment protocol that involved bi-monthly injections to stop my body’s production of testosterone, which feeds this cancer. He said it would be like menopause, times ten. (I think he underestimated his math!) The treatments were effective, but the effects on me and my body were debilitating. Eventually, I was no longer able to work and was put on permanent disability.
We continued these treatments for three years, until my doctor felt I needed a “medication vacation” to allow my body to heal and recover from the effects.
It was so nice!
For more than two years, I enjoyed not feeling like crap all the time. My energy levels increased, and I became active, even going to the gym and losing a significant amount of the weight I’d gained on the medication. (I’d gained SEVENTY pounds while on the medication, and I was able to lose most of that.)
We monitored my blood work every quarter and the Oncologist was satisfied that the cancer was being “managed.”
Then back in February <cue the music>, we got the unsettling news that “hot spots” had shown up in my bone scan.
Well, that can’t be good!
My third diagnosis: Metastatic Prostate Cancer.
I was told we had to look at re-starting treatments. Immediately. But at least this time, it would not be the injections I’d done before. This was pills. (Very expensive pills!)
New diagnosis…new medicine.
In April, the treatments officially began.
This treatment is designed mostly to manage the cancer; it’s not “cure,” so it’s considered long-term. (To answer those who wonder how long I’ll have to do this.)
So, I thought it was time for a “progress” report. (I’ll try to be brief, and much less emotional than when I shared about beginning this new protocol.)
Let’s start with two pieces of good news.
First, my PSA numbers have gone back down to undetectable. That’s a clear indication that the cancer is responding. (Since I don’t have a prostate, any number above zero is an indication of cancer. If the numbers increase, that means the cancer is also growing.)
It will be months before we can determine what impact the treatments have on those spots that showed up in my bone scan. The doctor wants to do another bone scan in the Spring.
But as I’ve learned in the ongoing cancer reality, we take the good news when it comes and rejoice!
Second, the Oncologist was right: the side effects of these meds are not as harsh as the injections. On most days, they are bearable.
Happy. Happy. Joy. Joy.
Granted, they aren’t non-existent.
In fact, in a few areas, they are very different than before:
Bone and Joint Pain. This is the most significant side effect, even worse than previously. It impacts what I’m able to do on a day-to-day basis and seriously affects my sleep.
Fatigue. I typically hit a wall around 2pm, and have to stop. Any exertion only speeds that drain of stamina. Whereas I was walking 2-3 miles last year, these days I can barely manage five minutes.
Broken Thermostat. The extreme hot flashes I had previously are not as common. Those were brutal, and almost daily. They felt like I’d opened a portal to hell inside me. On these meds, I feel warm all the time…with only occasional intense hot bursts. I’m hypersensitive to extreme heat, which makes living through a Texas summer an interesting experience.
Concentration and Memory. As my energy goes down, my ability to concentrate also decreases, which means anything creative I want to do/accomplish (e.g., writing) has to be done in the mornings. I have cognitive issues (forgetfulness) as I get tired, so we’ve also restricted solo driving, especially in the afternoon.
Size matters. My belly gets bigger, and so have my breast. And they are so sore sometimes I can’t wear a t-shirt that isn’t three sizes too big.
In fact, the only thing to get smaller is that "part" most men would prefer not to shrink.
Vivid Dreams. It sounds exotic and possibly even erotic, but it’s terrifying. Some call it “Hormone Brain,” and some women in menopause experience it. For me, it comes in the form of night terrors. I wake up screaming like a banshee! Sometimes, several times a night. (I scare my husband and our dog out of their slumber!)
John Mayer sings "Your body is a wonderland..."
These days, I feel more like: "I wonder what my body will do now?!"
It's frustrating to be so...betrayed...by my own body.
The numbers on the scale are creeping back up, in spite of all my efforts.
I’ll be walking and my legs give out. (Large body + Hard floor is not a great combination.)
Or I’m going about my day and suddenly, I’m sick. Usually, it’s just nausea. But occasionally, it’s instant full-on, get-out-of-my-way, don’t-block-the-bathroom-door kind of sick. (It’s one of the reasons I stay home these days.)
Often I want to sleep…I really need to rest…but the pain refuses to give in.
I make plans, then my body informs me: “Nope, we’re not gonna do that!”
This is my third time with cancer, and cancer treatments.
They say "third time's a charm," but it doesn't feel...charming.
(As much as I loathe sports metaphors, I reckon it's better than “third strike and out.”)
I appreciate all the many supportive, encouraging words from my friends. I wish I could relay to each of you…individually…what it means to me. You make all this more tolerable.
So for now, this is where I am: still in the game, and still swinging.
(Damn, another sports metaphor!)