Cancer Lesson #70: Staying on Track

Cancer Lesson #70: Staying on track

In April 2011, I wrote a poem about preparing for surgery (Lesson #23), which read in part, “This engine’s going to switch its track.”

The railroad analogy has held true and remains the best way I can describe what it felt like to learn I had cancer.

I’d been chugging along on my chosen track, taking in the sights, when BAM! I was shifted to an alternate route into Cancerworld.

Six months later, chemo – and my time on the siding – ended. I rejoined the “main line,” choosing a slower route with better scenery.

The new route included more stops, sometimes at smaller stations along the way and sometimes in the middle of nowhere, when I was too exhausted to go any further.

In short, there were times I became the little engine that couldn’t.

I’m sure you remember that book: Watty Piper’s classic The Little Engine that Could. If you’re my age or older, you probably read it as a “Little Golden Book,” but it’s published in hardback too.

The little engine’s mantra of “I think I can, I think I can” is a great philosophy, one that had always worked in the past. And yet, in that first year after chemo, there were times it didn’t matter how hard I thought I could. I couldn’t because I was just too damned tired.

I’d been warned recovery would be slow, but somehow I thought my train would be, I don’t know, ahead of the curve.

Tomorrow it will be four years since my surgery, and these days I occasionally find myself taking the easy route, even when I think I can – I know I can – manage the hilly one.

This is a change. After surgery and chemo I spent two years testing myself, trying to figure out what I could still do, but I no longer feel I have anything to prove.

Instead, I’ve begun to understand that we will all die with some goals unaccomplished.

It’s up to us to decide which ones to let go now and which to continue to strive for.

 

Cancer Lesson #67: Lowbrow Humor

Cancer Lesson #67: Lowbrow Humor

Your eyebrows and lashes may disappear more slowly than your hair. Likewise, when they reappear, the process may be sluggish.

This means you could be sporting the Uncle Fester look for longer than you expected.

While I was grateful not to lose my lashes and brows entirely, I found I missed them more than my hair. And though both returned eventually, neither they nor my hair are quite as thick as I remember them being before cancer.

Cancer Lesson #64: Hair Today Revisited

Cancer Lesson #64: Hair Today Revisited

When my hair first started to grow again, I looked like a baby ostrich.  I couldn’t quite carry off the uber-chicness of extremely short hair,  so I kept my head covered for the most part, usually with my baseball cap (very un-chic).

My daughter would take off the hat and rub my head like it was Buddha’s belly. I put up with it because I love her.

By the time I went back to work, the weather was getting cooler, so I started wearing wigs. I was working in the children’s section of the library, and the kids’ reaction to my hair color was sometimes quite entertaining.

For my first storytime in seven years, I felt like I needed a little extra oomph. I wore Darling Daughter’s fluorescent pink wig and promised my small charges the next time they saw me my hair would be a different color.

To follow through on that pact, I bought a new wig from a place I call “the hooker store.” (Darling Daughter didn’t appreciate the humor, but if you saw it, you’d understand.)

“Ooooh! Your hair is violet,” said one little girl, exhibiting an astonishing vocabulary and knowledge of color for a five-year-old.

Another little one said, “I like your hair dye.”

Her mother was aghast.

“How do you know it’s dye?” she asked.

“Because her hair was a different color last time I saw her,” replied her unfazed daughter.

The Starbucks barista asked if my hair color was in honor of Breast Cancer Awareness Month.

It was, I suppose, albeit unintentionally.

Even when I wore my “normal” wig, people commented. Maybe the raspberry pink streaks made me more approachable.

My favorite was midnight black with electric blue tips, also Darling Daughter’s.

She wouldn’t give it to me, though, not even when I played the cancer card.

Kids.

 

Cancer Lesson #59: Don’t Take Anything for Granted

Cancer Lesson #59: Don’t take anything for granted.

If you’re a cancer patient, or even an adult, you probably think you understand lesson #59.

I thought I did too, but two experiences near the end of my treatment proved how wrong I was.

You see, throughout my cancer year, from surgery to chemo, I followed my body’s lead on what I could and couldn’t do. If I felt up to something and wanted to do it, I did. If I felt crummy, I stayed home and read or watched movies.

I assumed – that is, took for granted – that I was the best judge of what I was physically capable of, and for the most part, that approach worked.

On two occasions, things turned out differently.

The first started as a normal week, with chemo on Monday and my Neulasta shot on Tuesday. As usual, I felt pretty rough on Tuesday and Wednesday, but by Thursday, I was doing pretty well.

That afternoon, a couple of friends came by, and we had what The Engineer (my husband) would call a good old natter. Everything seemed fine.

A few hours later, the situation changed drastically. Some kind of reaction kicked in, and I was feverish and shivering.

The Engineer helped me upstairs and took my temperature as I tried to remember how high it was allowed to go before we had to call the doctor. It was 101.3, which I convinced myself was below the magic number. (Later I discovered it’s not supposed to go higher than 101).

I’m not stupid. Had I been still been feverish the next morning, I would have called. But after taking a couple of acetaminophen and allowing an hour or so for them to kick in, I finally stopped shuddering.

Friday morning, I woke feeling much better, albeit a little shaky – and shaken – from the experience.

Fast forward a few weeks to my last chemo treatment (yay!) and final Neulasta shot (double yay!)

My muscles and bones ached and pained me for a few days, but by Friday, I was convinced the previous treatment reaction was a fluke.

No fever. No chills. No temperature.

I felt almost normal in an “out-of-breath-by-the-top-of-the-stairs-feeling-really-enervated” kind of way. Chemo was over, and I wasn’t sick or exhausted. Things were looking good, right?

Wrong, and wrong in a BIG way, because that night The Engineer and I went out to dinner and ended up in an ambulance on the way to the hospital.

I’d suggested dining out, even gone so far as to order a glass of wine to celebrate the end of chemo.

After a couple of sips, I started feeling weird. You know, that strange “out there” feeling that tells you something’s not quite right and maybe you might just puke?

“You may have to drink this.” I pushed the glass across the table. “I feel kind of funny.”

“You okay?” asked my loving husband.

“I think so.” I began gulping water in the hope that I was just dehydrated.

Eventually the waitress brought our food. I stared down at my fish and chips, thinking I can’t eat this.

My husband asked again if I was okay.

“No.”

The next thing I remember was waking to the sound of voices saying the ambulance was on its way and the mortifying knowledge I had to go to the bathroom immediately or things would soon get even worse.

The Engineer escorted me to the restroom in a sick version of the walk of shame. I could feel the other diners’ eyes on us, but felt too bad to care (much). Ambulances don’t have toilets, and that’s all I’m going to say on that subject.

Someone (probably the owner – what restaurateur wants an emergency vehicle parked at their front door?) was smart enough to direct the squad to the back. We exited to climb through its open doors.

All I wanted was to go home and crawl in bed. But my husband told me I’d been out for FIVE FREAKING MINUTES(!!). Going to the hospital seemed like a good idea.

Wrong again.

There, they decided to check my blood count – a reasonable suggestion in the situation – and perhaps give me some fluids – also a logical plan.

A uniformed woman came to take me for my chest x-ray.

I was suffering from chemo side effects. Why did I need an x-ray? And more to the point, why should we – okay, why should our insurance pay for one?

They said it was “standard procedure” when someone suffers a syncope episode (http://tinyurl.com/cwegp7) (Quick vocabulary lesson: Syncope is a fancy term for fainting.)

The nurse said I could refuse.

I refused.

Next, they tried to access my port to draw blood. Despite the nurse’s dramatic efforts to make it less painful, it hurt like hell. And he couldn’t get any blood.

They tried a vein.

No joy.

The guy was ready to have another go at the port, but I wasn’t going through that again.

I refused.

Eventually, they decided to give me fluids, so the nurse set up the IV adjusting the controls to push liquid through my veins so I wouldn’t be there all night – another good idea.

Though it burned a little, I figured that was because it was running fast.

The nurse asked if it hurt, which was fortunate because I hadn’t thought to complain.

“Sort of,” I admitted.

When we looked at my arm, it was puffing up from the fluid, which was being pushed into my tissue and not my veins.

At least, I assume that was what was happening since he immediately disconnected the needle.

About then, The Engineer started looking green, and I worried he was going to lose his lunch.

Turns out he hadn’t had any, and witnessing all the poking and prodding was making him ill.

I called it quits.

“I’m going home. I’ll drink lots of fluids, but we’re leaving.”

Funny, no one seemed surprised.

Clutching the extra-large hospital-provided scrubs in one hand, I shuffled toward the door, encountering the woman who had come to take my CAT scan.

I refused that too.

I’ve since visited that restaurant only once, under duress, to celebrate my brother’s birthday.

I hid under a big hat and sunglasses.

Cancer Lesson #54: Each Treatment Affects You Differently.

Cancer Lesson #54: Each treatment affects you differently. You may sail through your first chemo sessions with few side effects. Don’t assume this will always be the case, or you could be setting  yourself up for an unpleasant surprise.

I had a variety of side effects, most of them fairly minor.

One treatment left me feeling like an elephant had taken up residence on my chest. A prescription for Nexium took care of the problem.

Another time, I was struck by fever and chills. I somehow convinced myself my temperature was lower than the number at which I was supposed to call my oncologist.

It wasn’t, but by the time I reviewed my instructions, the fever was gone.

I got used to becoming overwhelmed with sudden exhaustion when I pushed myself too far.

Like when I decided to bicycle six miles in the summer heat – three miles into town, and three miles back.

It was only six miles. Not that hard, right?

Wrong! On the way back, we had stop every five hundred yards so I could rest.

Fortunately, I didn’t pass out. At least not on that occasion.

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Cancer Lesson #52: Most People Don’t Care Whether You Have Hair

Cancer Lesson #52: Most people don’t care whether you have hair.

It was summer when I was in chemo, and as I said before, wigs are hot. So even though I saw Grandpa Byrd every time I looked in the mirror – minus the glasses and wad of chewing tobacco – mine adorned the newel post of our steps more often than my head.

Having chosen comfort before fashion many years ago, I usually wore a baseball cap when I went out of the house.

That’s how I learned what happens when a bald woman goes out in public.

The answer is not much.

I expected some staring and pointing. Maybe even lights and sirens.

But no one gawped. In fact, no one seemed to notice.

Even the children – who might understandably wonder about someone who looks a little different – took it in their stride.

I was just happy they didn’t run screaming to their mothers. 🙂

At the time, I thought this indicated a level of sensitivity and awareness that spoke well for the human race. Now I wonder if perhaps people are simply too busy with their own lives to care about another person’s lack of hair.

Either way, it was good to be reminded the world didn’t stop because I got cancer.

In fact, the whole time I was bald, there were only two people who stared. The first was a young man who emanated a kind of weird social misfit vibe. I gave him my best “What are you looking at?” glare and swept past.

You see, I’d forgotten my baldness and assumed he was merely being rude. Which he was.

The second time, I was working the children’s desk at the library. An elderly woman came in with someone who was obviously her caregiver – possibly her daughter – to find books the older woman might enjoy. “Daughter” explained that “Mom” suffered from dementia, and liked to look at the pictures.

“Mom” was intrigued by my lack of hair.

She asked, with genuine curiosity, “Are you a boy or a girl? Because you have short hair like a boy.”

The daughter was mortified, and tried to steer Mom to other topics, but Mom would not be deterred. She had a question, and she wanted it answered.

“Are you a boy or a girl?” she repeated.

I found it difficult to reply, mainly because I found it hard to stop laughing long enough to speak.

Her interest was so sincere and friendly; the memory still makes me smile.

Addendum: One thing many people don’t realize is when the drug companies list hair loss as a side effect, they don’t just mean the hair on your head. I was lucky enough to keep most of my eyebrows and lashes, but they did get much thinner. On the bright side, it was great not to have to shave my legs. They were smooth as a newborn’s cheek. 

Also, some people have had success using cold caps during chemo to prevent hair loss. For me the thought of ice on my head – even for only a few hours every couple of weeks – was worse than the prospect of losing my hair.  

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Cancer Lesson #46: What to Wear on a No Hair Day

Cancer Lesson #46: What to wear on a no hair day.

When your comb starts to look like this, Shave!

and you decide it’s time to do this.

Shave2

It’s important to remember wigs, scarves and hats can offer protection for self-confidence by dented hair loss. In this post, I present options – some serious, some not –for anyone forced to deal with those dreaded no-hair days.
Shave3While you may want to saddle up and ride west,
escape is only a temporary solution.

Cowboy

HardhatSome days, when  you’re feeling
particularly fragile,
a hard hat and safety glasses
can add extra protection.

The Shady Lady is popular.
Shady1

So is the Motorcycle Mama.

Shady

Day-glow pink will brighten
the dreariest of days.
Pink


And there’s always that American favorite,
the baseball cap.baseball

hipsterIf you have crafty friends,
they can knit a cool hipster
cap
(especially nice for
cold winter nights).

tshirt

But the most comfortable
headwear I found
is made from an old
t-shirt.
Here’s a link to the
directions on the
American Cancer Society
website: http://lookgoodfeelbetter.org/beauty-guide/new-hair-looks 

Since I lost my hair in the summer,
I frequently didn’t bother with any of these options,
choosing instead to go bare.

nohat

Whatever you decide, I hope you’ll remember what I forgot
when my hair started falling.
It’s only hair.
It will grow back.
Be glad you’ll be there to see it.curl

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