Balancing Cancer's Uglies

or (The Hairless Elephant in the Room)

 

My 6’4”, 60ish Irishman sports brown locks flowing full to his shoulders--barely a silver streak spoiling the show. Icy blue eyes also bely his age with their little boy wonder, scanning gravel on our evening walks.  Without a doubt he’s one lucky punk full of super anti-aging genes.

Because he knows I’m six years younger, he thinks it’s so funny when we stand together to pay at any store or eatery register and I’m the one who receives the senior discount. Most of the clerks are only looking at me because I’m the one forking over our debit card.  Yes, I grin, too, in a good-natured way, knowing my premature whitish hair has earned us our savings. 

Neither of us laughed much when chemo stole every last snowy strand this past February, the week of my 57th birthday. Talk about ironic, ugly timing. Nothing screams cancer patient more than a Beetlejuice head.

“It’ll grow back, Rob,” my younger sister said.

“And your hair grows fast,” our middle sister assured.

 “We’ll buy pretty scarves for you.”

“And they make such realistic looking wigs these days.” 

Yes, yes, yes, yes.  My ever-supportive sisters’ statements echoed what I’d already researched on cancer support sites. 

But the real truth is: complete hair loss is one of the worst parts of any cancer diagnosis for most women who choose chemo.  Fear of dying, yes, that’s suffocating, too; but hair loss is the immediate and long term visual, through each step of the cancer path.  And its ugliness is a constant reminder of that looming death possibility. It looks like death.

That’s why being open to a positive support team, such as my sisters initiated, was essential. I say “being open,” because I’m not usually a leaner.  I’m usually a giver.  Growing up in a constantly moving family, I learned a long time ago it was easier to blend in and be accepted as the latest new kid if I were a giver.  Imagine my complete embarrassment when God nudged me into realizing some of His other children were even better at giving than I was!

One of His ever-supportive “God send’s” was my neighbor, a medical professional with more decades of experience and wisdom offered via texts and calls than I could ever repay.  I’ve called her Lucy for the past several years and she calls me Ethel.  She’s the lean, lovely, chic one and I’m…well, Ethel with chubby hips.  Lucy’s good humor, along with her medical insight, helped on so many levels, especially on the extra rough days.  As a matter of fact, on my second chemo day, she left her nearby office and stopped in to check on me.  My hair was coming out fast that day and she could tell by my face I wasn’t taking it well.  Instead of placating me with the phrases everyone says, she just gave me an understanding, supportive look and talked about something completely different. It was exactly what I needed--compassion wrapped in companionship.

Dozens of other folks have sent uplifting cards or texts, or brought groceries and care packages when I had no energy.  They were more than essential, the members of this support team, and I appreciated each gift of thoughtfulness.

Not long ago, Lucy asked me what advice I’d offer women with a new cancer diagnosis.  I joked and said, “Move in next door to YOU!”

She chuckled, but said, “Really, tell me.”

I sighed, “Step One: Order the pretend hair. Step Two: Make lists.”

Planning And Hair Loss

I’m an over-planner for everything.  It’s a trait that annoys most of my family until we’re on a trip and they realize how smooth our days of adventure play out with plenty of fun and plenty of relaxation.  Because I travel to speak at writing conferences, I also over-plan for what the family needs when I’m gone for a long weekend. 

Jotting down lists kept my head above water after the original pathology confirmed malignancy and I accepted the worst. My lists included things I’d normally need to do if I were going to be gone from the house for an extended time.  And during the chemo process, I’d be “gone” from my normal energy level.

Preparing ahead of time while I had energy and brain focus helped me not feel so helpless—which is a genuine negative feeling at diagnosis.  Instead, cooking foods to freeze for the rough days empowered me.  Writing checks to mail out with matching due dates on the calendar kept our bookkeeping under control.  Stocking up on non-perishables meant I would have necessary supplies on days I might actually feel up to fixing the punk Irishman his dinner. 

One thing new to my list: order pretend hair. I knew my face well enough to realize it needed a layered style to help soften the…uhm, interesting nose.  While scanning wig images I kept remembering comments the Irishman had made over the years about women with short, cropped hair. “Well, SHE’S given up trying to look like a female,” he’d say pointing across a restaurant.  He even tried to talk his elderly mom into a lengthier style rather than the tight, short perm that was so much easier for her to maintain at 91. Some days he’s even more of a punk than others. 

I shook off the comments and creeping depression to search wig and scarf websites. After scanning through their “clearance tabs,” I chose a couple of different wigs that closely matched my color and style.  I also ordered sleeping caps to keep the noggin warm at night. Imperative! I had no idea those wigs would still be crucial to my everyday well-being way into the heat of summer.  Hair regrowth is S-L-O-W. 

Back to planning: the process offered me a bit of power and control.  Those two things helped negate the fear that tried to distract me from forward motion. Unfortunately, those positives flushed away when chemo days arrived with their nightmare of nausea, muscle-aching fatigue, and raw mouth issues. Added to those fun features were hideous sores erupting across lips, cheeks and scalp. And the loss of hair.  Every last hair.  At least I didn’t have to shave my legs for several months.

 

Prepare, Prayer, And Standard Of Care

During the initial downtime after receiving the diagnosis in early December, learning how to build up immunity proved crucial for me. Because of the Christmas holidays, treatments wouldn’t begin until after doctors returned to offices, more imaging scans were conducted, and an out-patient surgery to insert a portable catheter was complete.  Wait, worry, wait worry. I side-tracked myself by studying legitimate, well-respected medical nutritional websites to glean tips on cancer-fighting diets. I gobbled Vitamin C, walked more often to increase my strength and stamina, and tried to choose healthier foods before the start of chemo. I knew I might not feel up to eating once the side-effects arrived.  But being the Ethel shape I mentioned, I’m probably the only cancer patient who barely lost a pound during the process. 

Pumping up my emotional support system also proved to be a lifesaver. I’ve always jotted down names of folks to pray for because it made me feel as if I were tangibly helping them as they faced a tough issue. So naturally, when people asked how they could help me face the fear of cancer--because we all want to help--I said, “Pray.” Specifically, I asked folks to pray for my healing as they sipped their morning coffee.  Coffee is universal.  Soon I had hundreds of folks praying on my behalf about the same time each day.  What a supernatural power!

One tip I saw on a website was for folks to offer to change a cancer patient’s sheets and do laundry, which was a huge help when muscles were sore and energy had tanked.

Even with all the preparation and prayer support, when the day of my first infusion arrived, I suffered long before any waves of nausea hit. While tethered to those medical poisons oozing into my veins on their mission to shrink the tumor I shivered with a genuine claustrophobia. Trapped. I thought the ever-present shadow of death was rough, but this palpable, tangible toxic mass of snaking tubes and syringes stabbing into my skin seared my emotions, burned my composure. No escape. I closed my eyes and prayed for healing.

Although scheduled for 20 weeks of chemo, I barely endured the first eight weeks of what the medical professionals call the “red devil” heavy-duty treatments with their gruesome side effects.  When those highly potent sessions ended and I was on schedule to start the less toxic 12-week round of chemo, I panicked. I ended up pleading with my oncologist for a reprieve and immediate switch to surgery.

He frowned and said he preferred I complete the entire “standard of care” regimen of chemo.  Of course, he did; he was a member of a statewide group of oncologists and this was their business, this “standard of care.”  It was his job to evaluate and shrink that tumor. I knew that, and the truth was I appreciated his intelligence and kind manner, always ready to answer my dozens of questions, but I persisted with what I really wanted—no more chemo. 

I think I wore him down because he finally agreed to refer me to surgery. One week later, I listened as my surgeon also stated she preferred I complete the “standard of care” treatment of full chemo to see if more of the tumor would shrink.  Of course, she did; doing so meant less tissue removal, which was an easier surgery and less invasive for the patient, with fewer ensuing risks. I understood the logic behind that premise, but she wasn’t going through chemo. I was.

Sweating under my pretend hair, I held my ground, saying I’d rather do with less tissue and added risks if I could avoid additional chemo and its side effects, as well as its damage to my immune system. She sighed as she reached into her files and handed me consent forms.

Of course both doctors offered genuine treatment truths to the equation.  I knew this because as with most writers, research was an extension of my personality.  Checking and double-checking facts and statistics were necessary parts of my business before ever citing them in books or articles.

So, naturally for my cancer treatment options, I scoured mayoclinic.org and cancer.org and other reliable websites to find information that helped weigh treatments along with their recurrence-reducing percentages. One enormous help in my decision-making happened when discovering this website: https://breast.predict.nhs.uk/tool.

After entering my cancer’s info into the site’s formula, I realized important points specific to my tumor.  For me, the risks of agreeing to more chemo (with its additional cancers’ potential and weakened immunity issues, as well as life-long neuropathy) out-weighed any benefit to what the site listed as a “possible tumor shrinkage.” Likewise, I learned the slight “2% percentage of no recurrence in ten years” achieved with extended chemotherapy did not offer enough reason to me to endure twelve more weeks of chemo. Bottom line: there was no guarantee that opting for additional chemo would shrink all of the tumor; but taking the chemo would guarantee me a weakened immunity, increased risk of secondary cancers, continued nausea, mouth and skin sores, as well as probable neuropathy and bone density problems.

And zero hair regrowth until at least two weeks after the final infusion.  I’d be lying if I said that 3.5-month duration didn’t factor into the equation.

Why? Because the most horrifying side effect for me (even more than the claustrophobia of chemo and fear of dying) was hair loss. It hit fast and lasted for months after chemo’s final drip.

For six long months, the “cancer patient” sneered back in the mirror first thing each morning. I’d grab my toothbrush and special brand of paste, hoping it wouldn’t sting the raw lining of my mouth, but an unfamiliar stubble-headed woman stared back at me. When I mustered courage to try to figure out how to apply make-up to lids with no lashes, a peculiar bald eagle offered its disapproving scowl.  When the heck did my eyelashes disappear?

 

Forty Little Lashes

itty-bitty caterpillar legs

is what they resembled

pitiful in length and placement

probably only twenty total

surrounded each pupil

birthed from a chemo chrysalis

a promise of hope

not that the cancer would never return

but perhaps a scalp full of itty-bitty caterpillar legs

would

When those mini lashes finally emerged, I pointed them out to my ever-encouraging, ever present daughter, Samantha.

“Oh, wow, Mom, I didn’t even notice they were missing,” she said in complete honesty. 

Most people didn’t, but women chemo cancer patients notice every hairless detail. Dee Dee Baker agreed with me when I shared the Forty Lashes poem with her one afternoon at our local radiation center. She emailed me later with her comments.

“I love your poem, and the excitement I felt when my eyebrows and eyelashes grew back was pure joy! Before it was really weird when I could look in the mirror and actually count the eyelashes I had left. I remember that lone little lash hanging on for dear life! It finally succumbed to the chemo, what a sad, sad, day! Lol!”

When a similar shadow of follicles eventually appeared on my naked scalp, those promises of hair took FOREVER to grow back to any semblance of a decent coverage. 

Something about hearing Dee Dee’s similar emotions resonated with me and helped me realize a couple of things:

  • Leaning on, and sharing with others is crucial;
  • Grieving hair loss is universal.

A fellow cancer patient and writer friend said, “I believe God also understands how flat-out sad you are about your hair. It’s a loss to grieve, and like other grief, it will heal.”

I hadn’t thought about hair loss being like a death, but it was a cosmetic kill to who I used to be, and would never be again because everything changes after cancer.  Lucy said her patients tell her all the time, “There’s life before cancer, and there’s a different life after cancer.”

I’m learning the truth of that statement each day.  Even though the rounds of chemo, surgeries, radiation sessions, and a not-so-fun tissue infection have finally ended, I’m still not “me.”  The short hair shooting out in bizarre directions isn’t me. The blood-shot color behind my eyes isn’t me. The pitiful new fatigue isn’t me.  The recurring thoughts about when my life might end isn’t me.

Being thankful at my core, will always be me, however, and I’m still blessed with my punk Irishman, who has YET to say anything positive about the short hair.  He prefers I wear a hat, and that’s okay because he’s part of my support group that never gave up on the old me. Each day when coffee prayers are lifted, these people are treasures that no amount of hair grief could compare to. For sure, whoever the new me turns out to be, I’m choosing to count blessings, grateful for each day’s pulse and the spirit’s power to praise.