My Cancer Journey

It began on a toilet…
(Sorry, but that got your attention, didn’t it?)

I won’t give all the tedious details of this journey, which has now stretched more than twenty-years.
These are highlights.
My cancer…travelogue, if you will.

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.

Shortly after that, 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.
We 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 my wonderful partner, who is now my husband.
(That’s a fun story!)

We dated for several months and eventually moved in together.
(If he’d known what was ahead, I wonder if he’d 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 had no other 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 little or no reactions to this treatment, but I was very sick with physical issues and “delightful” challenges that aren’t considered polite conversation in respectable company.
(That’s what my mama always taught me.)

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” some 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.
There was no doubt in my mind 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 to my partner: 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 like going through menopause, times ten!
(BTW, 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’d done 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 got too high again, we could 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 the third 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 of the pills, which was $3,000 a month.
(Yes, you read that correctly!)

Like the injections, the treatment slows the growth of the cancer by taking away what feeds it—testosterone.
(Like removing oxygen to suppress a fire.)
Again, this is a treatment, not a “cure.”

It seems my cancer is more chronic than critical at this point.
Persistent, treatable, and responsive.

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

I remained on this medication for nearly two years, until my insurance announced they would no longer cover their part of their cost for the ($12,000 a month) medication, 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 that we live in a country where that’s necessary.
Or where $12,000-a-month medication is acceptable.
Or that we have a corporate healthcare-for-profit system that can decide 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, (3) you have exceptional insurance, (4) you work for an insurance company and make lots of money off sick people, or worse, (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.”

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!)

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, but I have to 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!

And now…

I’m writing this at the end of 2021.

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.

All hail the wonders of modern medicine!

I’ll stay on the treatments for the foreseeable future, and visit my Oncologist later in the first quarter of next year.

There you have it—my journey to this point.
Hope you weren’t too bored.

(Hey, it could be worse. At least it wasn’t vacation slides!)

In this section I’m sharing more details of the side effects brought on by the medication, and a general response to the oft-asked question: how are you?

This is not designed to elicit sympathy, or present myself as some of kind of valiant warrior.
I offer this for information, and a bit of explanation for those who sometime wonder why my life is so much more isolated these days.

I never want to “compare” suffering; I know that many have it worse than I.
I certainly don’t want to minimize what women who go during menopause.
This is merely what’s happening to me, and how I’m coping.

Author’s Note: The medication in my each of my treatment protocols provided a list of “probable” side effects, “possible” side effects, and also “rare, but serious” side effects. (The ones that say “Contact your doctor immediately.”)
Well, I have all of them!
Lucky me.
My doctor calls me the “poster boy” for the side effects.
And with this current protocol, they are often mind-numbingly more intense than what I experienced in the last two rounds of treatments.

John Mayer sings "Your body is a wonderland..."
These days, I feel more like: "I wonder what my body will do now?!"

Bone and Joint Pain. This has been a significant one for me, especially during this current round.
It impacts what I’m able to do on a day-to-day basis.
Often I want to sleep…I really need to rest…but the pain refuses to give in.

Fatigue. I typically hit a wall around 2pm, and have to stop. Any exertion only speeds that drain of stamina.
I admit, I’m tired. All the time!
The near-constant pain is exhausting.
Events and activities become an “If I do this…I won’t be able to do that” trade-off.

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.

Broken Thermostat. One of the most common effects of a hormone imbalance is hot flashes. Since my body is not producing male hormone…and I seem to have a strong response to that chemical imbalance…my hot flashes are persistent and varied.
Some are mild; my faces flushes and gets warm.
Many are extremely brutal, and feels like a portal to hell has opened inside me. Or like I was about to burst in flames.
(Please resist the obvious pun!)
Those can make me queasy, or nauseous…with accompanying ickiness.
At times, I fight a panic attack, feeling like I’ll never be able to breathe again.

My skin stays warm all the time, and if someone…like my husband…puts their hand on me…the exposed area will begin to sweat.
I’m hypersensitive to heat, which makes living through a Texas summer an interesting experience.
We now have at least one fan in every room…including the bathroom…for those times when hell bursts forth in my body.
There are FOUR fans in my study and I sleep under two.

Mood Swings. Having cancer is emotional. (Thank you, Captain Obvious!) Few of the feelings would fall on the “positive” side of the Emotions Wheel. When we add the effects of a hormone imbalance, the Emotions 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 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…I’ve learned that during these sad times to talk honestly about my feelings.
I limit my writing to journaling, otherwise my novels would be post-apocalyptic horror stories.
And I do not make major decisions.
Thank Thor for therapy.

Weakness and Dizziness. I notice it most in my hands and legs. I have problems gripping, so I drop things.
(“I want to say one word to you. Just one word. Are you listening? Plastics!”)

Sometimes, my legs will not support me. Or the room begins to move.
(Large body + Hard floor is not a great combination.)
I now use a cane to steady myself when walking.

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.
Same with deep conversations.

I experienced cognitive issues (forgetfulness).
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.

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 close the door and just cry!)

Vivid Dreams. It may sound exotic and possibly even erotic, but trust me, it’s not.
For me, it comes in the form of night terrors. I wake up screaming like a banshee!
(I scare my husband and our dog out of their slumber!)

I’m angry that I have cancer…again.
It wasn’t that much fun the other times.

• The numbers on the scale are going back up, in spite of all my efforts.
  My metabolism seems to have become extinct.
  I feel so huge, which doesn’t help the moods.
  (I almost never look at myself in a mirror!)

• Before this round of treatments, I could walk thirty to forty minutes or ride a couple of miles on the recumbent bike. I did that at least three times a week.
  Now I’m winded after going to the mailbox.
  We walk around the block and I have to rest for an hour. Or more.

• Sometimes, without warning, I’m sick.
  Usually, it’s just nausea, but occasionally, it’s full-on, get-the-hell-outta-my-way, don’t-block-the-bathroom-door kind of sick.
  (That’s one of the reasons I tend to stay home these days.)

It's frustrating to be so…betrayed by my own body.
I make plans, then my body informs me: “Nope, we’re not gonna do that!”

Yeah, that was a lot, wasn’t it?
Sorry!

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.
You make all this more tolerable.

Author’s Note: Since my first surgery, I’ve had several friends who got a cancer diagnosis, and they are no longer with us.
Some were dead in a few months. Others a few years.
That’s daunting. And baffling.
Why them, and not me?
I don’t have the answer, so I cultivate an attitude of gratitude.
Not for having cancer—that would be masochistic—but for surviving.
(I have to remind myself of that on those days when I feel so horrible!)

In the midst of thousands dying in the pandemic, and the ineptitude of elected GOP leaders, I consider myself fortunate to have competent doctors and an effective treatment.
I can…and do…complain about the side effects, but I am thankful to be alive.
I am blessed!