My Cancer Journey

We begin the story on a toilet…

(Sorry to be crude, but it got your attention, didn’t it?)

One in a Million?

My first cancer diagnosis came by “accident” (if you believe in such things) in 1999, when everyone thought Y2K was the biggest problem to worry about.
I had a nasty bug (hence the toilet reference) that included pain, nausea, fever, and hard chills, so I went to the doctor. He diagnosed me with Prostatitis, a prostate infection, and gave me some antibiotics.
While I was in the office, he also ordered a series of blood tests.
In a few days, I was back at work.

Chalk one up for modern medicine.

Then the doctor called to let me know that my PSA level was a bit high.

Clarification: Prostate-specific antigen (PSA) is a protein produced by the prostate gland. The PSA test measures the level of PSA in the blood via a blood sample. The higher the PSA, the more likely there’s the presence of cancer.
Source: National Cancer Institute

He felt it could be connected to the infection and medication, but recommended we “watch” the numbers.
I set an appointment to come back in three months.

For more than a year the PSA numbers barely moved; still higher than considered “normal” (As much as that word ever applied to me!), but not high enough to be overly concerning.

Ironically, it was during this time that I met a wonderful man, who is now my husband.

We dated for several months and eventually moved in together.
(I wonder: if he’d known what was ahead, would he have run like hell?)

In August on 1999, we purchased our first house, and began remodeling.
The next month I went to the doctor to learn my PSA numbers had doubled.
I was referred to a specialist.
Since PSA is not the primary evidence of cancer, he wanted to do more tests, including a “digital exam.”
(Which does NOT involve a DVR!).

He didn’t think it was cancer.
Prostate Cancer is typically found in older men, and I was a bit young—in my 40s.
Plus, I didn’t have any symptoms.

“It’s a one-in-a-million chance,” he told us.

Nonetheless, he ordered a biopsy.
(You do not want to know how they do that!)

A Literal Wake-Up Call!

A few days after the biopsy, at nearly ten o’clock in the evening, my doctor called with the news: I had cancer.

(If I had to be “one-in-a-million,” I would have preferred a winning lotto ticket!)

Try going back to sleep after hearing that!
Sitting in our bed, in the dark, my partner and I cried, then prayed.
I assured him that God was big enough for this.

The next day, we went in for a consultation.
Because of my age, he recommended the most aggressive option: a radical prostatectomy. Immediately.
(Radical has nothing to do with my politics. It’s the removal of the prostate.)

Surgery, Treatments…and more Surgery

We did the surgery in October.
A few days after I got home from the hospital, the doctor called to inform us that we didn’t get all the cancer, and I would need to have seven weeks (five days a week) of radiation.

According to my research (I always do my own research!) some people have only minor reactions to this treatment, but I was very sick with physical issues and “challenges".”
I lost almost 30 pounds during the process, and not in a fun, Jenny Craig kind of way.
A couple of corrective surgeries were required to “repair” internal damage from the radiation.

Semi-annually for more than 12 years, I did a PSA blood test, which showed zero.
Cancer free!

Cancer, The Sequel

Then out of the blue, the results came back with a slightly elevated reading; not much…but just enough to send me back to my specialist.
We did another test a few months later, and the number had increased again.
I knew what it meant.
(Remember, I do my research)
My partner wasn’t convinced, so we consulted another specialist who confirmed it: the cancer was back.

This time, we found out just before my birthday.
(I'd asked for a gift card; I would have settled for socks and underwear.)

Again there were tears, and prayers.
Once more I affirmed: God is still big enough for this.

We discussed treatment options with the doctor, and decided on Hormone Suppression Therapy, administered by injection bi-monthly.
It’s been shown that testosterone “feeds” prostate cancer, so the goal was to reduce the body’s production of this hormone to nearly zero.
Technically, it’s chemical castration. (TMI?)

The doctor warned that it would be like going through menopause, times ten!
(Personally, I think he underestimated!)

Ch-ch-ch-changes

The treatments were effective.
My testosterone was barely registering and more importantly, my PSA levels were negligible.

But the effects on me and my body were debilitating.
They were not unexpected—clearly outlined in the precautions that come with the medication—but according to my Oncologist, my reactions were severe.

I continued to work for a couple of years, but eventually, the side effects were more than I could handle and still do my job.
In 2013, at the suggestion of my doctor…and the insistence of my partner…I agreed to leave my job and be placed on permanent disability.

Rest Stop

We did these treatments for three years, monitoring my blood work every quarter.
The Oncologist was satisfied that the cancer was being “managed” and felt I needed a “medication vacation” to allow my body to recover.
My PSA numbers were still negligible, and there wouldn’t be long-term harm.
”If the number get too high again,” he said, “we can always re-start the injections.
(Yeah, that’s something to look forward to!)

It was soooo 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 FIFTY pounds while on the medication, and was able to lose most of that.)

Third time’s a charm?

Of course, my numbers did rise, but nothing alarming.
Until 2018, when they jumped to more than 300.
The doctor ordered a bone scan and discovered “hot spots” (my doctor’s words) in my bone scan.

Well, that can’t be good!

The cancer was likely in my pelvis, and my ribs.
We had a revised diagnosis: Metastatic Prostate Cancer.

Time to have the “treatment talk.”
Instead of injections, my doctor prescribed a new oral medication.
Two pills, once a day.
(Two very, very, VERY expensive pills!)
Plus two steroid pills, twice a day, to prevent potential internal damage from the treatment pills.
<sigh>

We were able to get a grant to pay for our co-pay for the meds, which was $3,000 a month.
(Yes, you read that correctly! The full price, without insurance, was $11,000 a month.)

This treatment also slows the growth of the cancer by taking away what feeds it—testosterone.
(Like removing oxygen to suppress a fire.)
It’s a treatment, not a “cure.”

Note: It seemed my cancer was more chronic than critical.
Persistent, treatable, and responsive.

The side effects of the pills were not as harsh as the injections, and the results were positive, though there were also additional, quirky side effects from the steroids.

I remained on this medication for nearly two years, until my insurance announced they dropped it from their prescription coverage, and we didn’t get renewed for the grant.

Personal Rant: I’m grateful for the grants that allowed me to get the medication, but I find it annoying as hell to live in a country where such measures are necessary.
Or where $12,000-a-month medication is acceptable.
Or that we have a corporate healthcare-for-profit system deciding not to cover life-saving medications.

If you’re not furious, it probably means (1) you are not paying attention, or (2) you’ve never needed this kind of expensive treatment, or (3) you have exceptional insurance, or (4) you work for an insurance company and make lots of money off sick people, or worse, or (5) you don’t give a damn.

My Oncologist calmed my nerves by saying I could take another “medication vacation.”
We’d continue to watch the numbers.

(Have you noticed how much “watching” and “waiting” we do? It can be maddening.)

What this Pandemic needs is…

When the shelter-at-home orders began to be ordered in 2020, we had already self-imposed our own. I was not on the medication, and feeling much better, but knew I was considered high risk.

In November, I had my now-annual bone scan and the “hot spots” seemed “hotter.”
There appeared to more of the little “flamers.”
(No pun intended.)

A PET scan was ordered, which we scheduled for February of this year.
That’s when we learned the cancer had spread to new areas, including my lymph nodes.

Well, damn!
(This also happened around my birthday. And it didn’t come with chocolate cake!)

More Convenient Medication, Worse Effects

My oncologist suggested a new treatment protocol that had just gotten FDA approval a few months earlier—a single, daily pill.
As expected, it was very, very expensive.
And it was so new that my insurance wouldn’t cover it.
Fortunately, we qualified to get the medication free from the manufacturer.

We were stunned at how quickly the pill reduced my PSA numbers—from almost 300 to under 20 in just a month.
I’m thrilled that it’s so effective, though I still contend with the daily impact on my body.
The usual, expected sides effects (see below) are much more extreme than either the injections or the two pills.

Double damn!

It’s a small world…

The effects of the original surgery, the radiation treatments, the subsequent surgeries, and the multiple rounds of hormone suppression protocols have been disheartening.

When my treatments made my job a challenge, I went on permanent, medical disability, going from being around hundreds of people every day, to being by myself most of the day.
My world got smaller.

The treatments brought significant fatigue and mobility issues, as well as a myriad of problems that one does not talk about in polite company, and makes it difficult to be in polite company.
Staying home is easier!
My world got smaller.

When the pandemic forced us all inside, we decided to be extra precautious.
Going to doctor appointments is most of my social life.
(Well, there’s Facebook!)
Other than short walks around our condo complex, I almost never go out.
My world got smaller.

And now?

I’m writing this at the end of 2021.
I have good days, and bad days.
Sometimes, it’s the same day.

Earlier this month, I had another PET scan and the results were, in the words of my doctor, “beautiful.”
(No, he wasn’t referring to my pretty kidney or handsome liver!)
There is no evidence that the cancer is continuing to spread.

It’s not a cure. Or “remission.”
But the treatments are working to prevent growth and spread.

All hail the wonders of modern medicine!

I’ll stay on the medication for the foreseeable future, and we’ll “watch” the numbers.

Meanwhile, there’s still those pesky side effects I have to endure.
(See below)

In this lengthy, personal treatise I’m sharing details of the side effects brought on by the medication, and the impact it’s had on my body. On my life!
As a writer, it helps when I can express it this way.
I’m not trying to elicit sympathy, or paint myself as some of kind of valiant warrior.
(I’m not!)

I offer this as information for those who want to understand more about my disease and treatments, as explanation for those who are curious about why my life is so more isolated these days, why I won’t come to dinner, and as an answer for those who wonder why I “still have cancer” after all these years.
(Yes, I have been asked that question.)

Of course, I’m angry that I have cancer…again.
(Understatement!)
It wasn’t that much fun the other times.

I’ve never wasted a lot of time on the “Why me?” question.
That seems to say I’d rather someone else have it.
Never!

Also, the “why?” question implies there’s some some kind of cause-and-effect.
”What did I do to deserve this?”

I have a disease.
I’m not being punished by a pissed-off deity.
I wasn’t chosen.
My cancer doesn’t have some “higher” purpose.
Those who believe “everything happens for a reason” can keep that trite platitude to themselves.

I have a disease.
A horrible, yet indiscriminate, disease that happens to the rich, the poor, adults, children, men, women, straight, queer…on and on.

Since my first surgery, several friends have received a cancer diagnosis, and they’re gone.
Some were dead in a matter of weeks. Others made it a few years before they died.

That’s daunting.
And baffling.
Why them, and not me?

I don’t have an answer. I don’t think there is one.
(And I’m suspect of those who claim they do!)
So I focus on cultivating an attitude of gratitude.
Not for having cancer—that would be masochistic—but for surviving cancer.

I can…and do…complain about the side effects of my treatments, but I am thankful to be alive.
I know I’m blessed!

Coping has become second nature.
I’ve learned to listen to my body, even when it’s uncooperative.
Admittedly, it's frustrating to be so…betrayed by my own body.
I make plans, then my body informs me: “Nope, we ain’t gonna do that!”

I’m better at setting personal boundaries, and even saying NO to the requests, expectations, and demands of others.
Things that don’t need or deserve my limited energies can be ignored. Usually without guilt.
(Operative word being “usually.”)

Most of what’s below, to one degree or another, will be familiar to anyone who’s gone through menopause.
I don’t want to “compare” suffering; I know that many have it worse than I.
For what it’s worth, this is some of what’s happening to me.

Joint Pain & Weakness. Sometimes, my legs will not support me.
I now use a cane to steady myself when walking.
(Large body + Hard floor is not a great combination.)

I have problems gripping objects, so I drop things.
(To borrow a line from The Graduate: “I want to say one word to you…Plastics!”)

Fatigue. I have little stamina and limited energy. The near-constant pain is exhausting.
I typically hit a wall in the early afternoon, and have to stop. Read, or watch TV. Any exertion only speeds that drain of stamina.

Before this round of treatments, several times a week I was walking thirty to forty minutes, or riding a couple of miles on the recumbent bike. Now I’m winded after going to the mailbox.
My husband and I walk around the block and I have to rest for an hour. Or more.

Events and activities become a trade-off.
(Those of us living with chronic pain and fatigue talk in terms of “spoons.”)
”If I do this…I won’t be able to do that.”

Example: We wanted to visit family for the holidays, but I knew it would magnify my pain, and take days to recover once we got there. Then it would be time to leave…with more recovery once I got home.
It’s a lot to endure, so we opted to stay home.

Nausea, and Beyond. Sometimes, without warning, I’m sick.
Usually, it’s just queasiness, but occasionally, it’s full-on, get-the-hell-outta-my-way, don’t-block-the-bathroom-door kind of sick.
The intense hot flashes can also trigger sickness.
Because there have been unexpected, unfortunate “incidents” that aren’t considered polite conversation…or polite behavior…in respectable company, I tend to stay home.
(More TMI?)

Hormone Havoc. The common assumption is that a decrease in hormones only affects sexual function.
(Partially true. The libido becomes the Li-Bee-DON’T!)
But many other areas are impacted too.
Here are a few of mine:

• Weight and Shape.
  My belly got bigger, and so did my breast, which brought an interesting experience.
  
  The numbers on the scale are going back up, in spite of all my efforts.
  My metabolism has gone the way of the dinosaurs.
  Worse, I feel as huge as a dinosaur, which doesn’t help the moods.
  (I almost never look at myself in a mirror!)

  In fact, other than my stamina, the only thing that’s decreased in size is my…
  Never mind.
  That’s probably also TMI.

• Broken Thermostat.
  One of the most common effects of a hormone imbalance and menopause is hot flashes.
  Since my body is not producing male hormone, I have them.
  Some are mild; my faces flushes and heats up.
  Many are brutal, like a portal to hell has opened inside me. It feels like I’m about to burst in flames.
  (Please resist the obvious pun!)
  And even though these “solar flares” come daily, when they’re sustained, I sometimes have to fight a panic attack, feeling like I’ll suffocate.

• Mood Swings.
  Having cancer is emotional.
  (Thank you, Captain Obvious!)
  Few of the feelings would fall on the “positive” side of a “Feel Wheel.”
  When we add the effects of a hormone imbalance, the Feel Wheel becomes less like a leisurely ride on a Merry-Go-Round and more like being trapped in a demon-possessed Tilt-A-Whirl.
  
  I sometimes find myself crying for no reason. Or for silly reasons.
  I can get angry just as quickly. And I cringe at how nasty I can be.
  (Bless my dear husband’s heart.)
  My feelings get hurt easily, taking me back to sadness or anger.
  Depression can come in waves, ranging from “the blues” to being sucked into a dark hole.
  (Once I slept for four day, only getting up to drink water, take my meds, and go to the bathroom.)

  Over the years…and three rounds of these treatments and ongoing therapy…I’ve incorporated some useful coping mechanisms:

  • Self-Talk (Cognitive Behavior Therapy) is a practice I was taught years ago, and continue to use during these treatments.

  • Talking honestly about my feelings to my husband. He’s learning when to give me space and when to press me for conversation.
    (Thank Thor for therapy and an understanding husband.)

  • Journaling. I’ve been journaling for nearly a century, and it’s extremely helpful for me.
    I’m able to express every kind of emotion—fear, anger, sadness, regret—and all my dark thoughts.
    (If I worked on my novels during these times, they’d end up as post-apocalyptic horror stories.)
    

    Disclaimer: These are methods that work for me. I am not (NOT!!!) offering psychological advice.
    If you are depressed, please seek help from a professional. (I do, and I recommend it.)
    
    

• Cognitive (Dis)Function.
  Since beginning the treatments, I’ve experienced concentration and memory issues (forgetfulness), which is common with hormone imbalance.
  I sometimes can’t think of a word when I’m looking directly at an object, or when I’m writing.
  As a writer, and one-time public speaker, this one is probably the most annoying and distressing for me.

  Once, driving home from work, I couldn’t remember where I was or how to get home.
  (That was terrifying!)
  It’s one of the primary factors that led to going on disability from my job, and why I don’t drive by myself these days.

  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.
  Same with deep conversations.

  I try to be “productive” in the morning when my mind is fresh, but there are days it’s all I can do to sit in the recliner, on my heating pad, and read a book. Or watch TV.

  
  Oh, and I also have night terrors.
  I don’t always know it’s happening, but the blood-curdling screech wakes the entire house, and possibly some of the folks resting in the local cemetery.
  (The neighbors probably think I’m auditioning for one of those “scream queens” roles—No catty comments!—in a B-horror movie.)

Too much?

There you have it—my journey to this point.
That was a lot, wasn’t it?
Sorry!
(Hey, it could be worse. At least it didn’t include vacation slides!)

I appreciate all the supportive, encouraging words from my friends. I wish I could relay to each of you…individually…what it means to me. What you mean to me!
You are my strength and inspiration.
You make all this more tolerable.

P.S. Cancer sucks!