Cancer Lesson #74: Happy to Be Here. Happy to Have Hair.

Cancer Lesson #74: Happy to be here. Happy to have Hair.

I find it hard to believe it’s been three and a half years since my last chemo. How could I have had surgery and treatment for cancer, and managed to emerge with a normal life once more?

It boggles my mind.

It’s a new kind of normal, of course. Though they’ve faded, I have scars to rival Frankenstein’s, and — like others who have gone through a bodily trauma — aches and pains I never had before.

For nearly a year, my chemo curls rowdily rioted around my face like the aftermath of a bad perm.

But I’m back to playing soccer, and last year I did a bike tour. I’ve also been known to attempt a cartwheel, usually in an ill-conceived fit of whimsy. The last one ended with me plopped on my bottom, but never mind.

Clearly neither my tumbling nor my soccer skills will ever win me a place on an Olympic team. And there are granddads (plenty of them) who zoom past me whenever I ride my bike.

The point is no one know if I’d ever be able to do any of these activities again, and I can.

That’s worth a cartwheel.

Having survived cancer, I know everything else is gravy. The icing on the cake. The cherry on the – well, you get the idea.

Being alive is a miracle, and I developed a mantra to remind me of that fact.

“Happy to be here. Happy to have hair.” I say it whenever I start to stress over something stupid. Sure, it’s not the most sophisticated phrasing, and maybe I sound a little silly.

I say it anyway because I know I’m one of the lucky ones.

I’m still here.

“Happy to be here. Happy to have hair.” I say it in memory of those who are not.

Take a moment to think of them. And take some time to enjoy the life’s extras too – the gravy, the icing, and the cherry on that sundae.

I do. Especially the sundaes.

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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 #62: Chemotherapy Has a Long Tail

Rosa's Long Tail

Cancer Lesson #62: Chemotherapy has a long tail.

I’ve been lucky. My cancer lessons could have been much harder learned. Soon after I finished treatment, however, one slouched into my brain forcing me to comprehend that exhaustion – sheer debilitating fatigue – had become a part of my day.

I’d never felt so feeble, even during chemo — probably because I was at home during most of that time and could rest whenever I wanted.

You see, I had access to both my accumulated sick time and the library’s sick bank, which meant I didn’t have to work during that period. Plus I was between positions so there were no worries about how my department was functioning without me.

Returning to work made all the difference. I discovered I couldn’t work and do everything I thought I needed to, let alone everything I wanted to do. And I was only working part-time!

Most evenings I came home and stared at the walls.

It was weird to feel mostly healthy when you’re not yet completely recovered, but I knew it would get better.

My oncologist told me I was at about 50% of my normal energy level. Chemotherapy, he says, has a long tail.

It’s a great image, bringing to mind a sleek cat slowly disappearing from view. The last one sees is a flick of that tail, and then it’s gone.

I expected my “new normal” to appear as silently as the cat, and it did. One day I realized I felt, well, almost normal. And that was that.

No more tail.

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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