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.

 

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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 #45: Hair Today. Gone Tomorrow.

Cancer Lesson #45: Hair today. Gone tomorrow.

The first time I cried – I mean really cried, not just getting teary-eyed – I’m ashamed to admit it was over my hair.

You see, it had begun to fall. And so I cried, even though I was prepared with my sassy wig and scarves and soft t-shirts to wear on my head. (You don’t know that trick, do you? It’s a secret, known only to those who have been inducted into the “Cancer Family.”)

I knew it was stupid and vain and ridiculous to cry over something that I’d expected to happen, something that was the result of – Hello, Kym! – medication that was saving my life. Especially when I’d already gone from long to shorter to extremely short hair in preparation for this very occurrence.

Fortunately, The Engineer was home. He hugged me until my tears stopped, and then I made him take me out for ice cream, which made me feel even better. Later that weekend, we shaved my head.

I was okay with being a baldie after that. Taking control of the situation helped, I think. In an upcoming lesson, you’ll see we even managed to have some fun documenting “The Great Shave.”

Note: When I posted this originally, it contained following addendum:

This isn’t a plea for sympathy, so if you leave a comment, please make sure it’s of the “Buck up, honey” variety and not telling me I have a right to feel sorry for myself. Such a statement would be wrong when there are so many people who struggle every day with so much more. However, do feel free to tell me to sort myself on and get on with it.

I’m pleased to say my friends honored that request. These are the comments I received:

Buck up, honey I have always thought that, if I lost all my hair, the first wig I would buy would be a full Irish dance wig, kind of like what I wear in competitions. I’ve often fantasized about having tight, springy curls that bounce in RL  Of course, you know how short my hair is! I’ve often wished I could wear the wig in real life…or any other wig that looked good.

 Honestly, I’ve often been surprised that changing hair styles like one changes nail polish has never caught on. Even Barbie does it! No more bad hair days. No more dandruff (well, where anyone can see). I’ve been going gray since I was 18 years old…I should buy stock in Clairol. I’d save SOO much money on hair colors and dye-friendly conditioners. And changing colors would be easy. I can change the style and color of my Second Life avatar’s hair on a whim–and I do! I bet if Oprah came out with a line of wigs, everybody would do it 

Hey Kym, Look on the bright side. After you shave your head. . . at you and Dave with still be a fine looking couple. LAUGH DAMMIT ;p)

Dave’s had no hair for as long as I can remember, hugs xxxx

I read too many old books of fairy tales and legends in my youth and so can’t help but transform this into an illustration from one of them. So, picture it: a woodcut print, of course, but hand tipped with colors and gold by some long fingered scribe working by candlelight that picks up not just the gleam of the gold on his brush, but the gleam of his eyes which, though wise, are merry – if too old for his youthful face.

And, there, on his paper sits a figure clad in the garb of a knight, but one slim and supple as a reed. The shining plate of the armor is picked out in emerald enamel forming a lush vine with the leaves shaped as hearts that twines around tiny books, an inkwell, flowers, birds, and other motifs the artist has only hinted at and we can only guess at. Just past the knight’s shoulder, and mostly out of frame, stands the a squire holding a helm and though we can only just see the fingers of one hand, from their delicacy, we can see that the squire is a young girl.

Behind you, a man stands clipping your hair with gentle hands to let it fall at your feet in a gleaming and silken heap. And, though the knight is weeping, the tears glittering like stars on the pale face, it is the eyes that strike us – for through the pain and fear and tears, strength burns through like a flame and they are fierce.

Someone who does not know the truth, would surely mistake this knight for Joan of Arc, but those of us who know you, Kym, would recognize your face there and would know just how sharp the sword that lays across your lap to be.

(And that is what comes, my dear, of having self-indulgent writer friends.  )

Buck up honey! Thinking of you and your lovely soon be beautifully hair-free head. 

I have been thinking about your post ever since you sent it. There are so many “handles” in it to grab on to for a response. As Jean d’Arc wrote above, sort of, it is what hair symbolizes, or some such thing. What not having hair symbolizes. It’s not just, “a visible sign to the world, but a representation of an inward state.” Maybe. Without hair, in many ways your privacy is gone, and there’s therefore more internal pressure to “buck up”. There’s a new teeter totter to find balance with. So many images and ideas came from your writing. I just wanted to share some of them, tell you how much and how often I think of you, And I send you that blue calm shield.

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Cancer Lesson #39: Sleepless Nights

 Cancer Lesson #39: Sleepless Nights

I’ve never been one to stay up all night, even in college, when it was considered de rigueur to pull at least one all-nighter. But a week after my first chemo treatment, I couldn’t sleep.

I’d experienced a similar wakefulness at the onset of menopause, when characters set up housekeeping in my head and began keeping me awake. Their slamming doors and raised voices made me want to call the landlord. When I realized the landlord was me, I got out of bed, began writing, and never looked back.  Though hormonal hot flashes continued to interrupt my sleep, I always managed to get enough rest to function.

Cancer treatment, it seemed, was different. I struggled for hours, trying to relax enough to drift off. My thoughts chased each other around and around in my head in a frenetic game of tag that left me exhausted, but wide-awake.

The first time this happened, I got up at one and wrote a blog post. That took until two-thirty. Then I got the brilliant idea to switch my writing focus completely and began a proposal for a non-fiction book about cancer. Of course, composing that document took until morning, when I greeted the dawn with a bleary-eyed squint, wondering how I’d make it through the day.

I was convinced this problem was somehow drug-related, but the only reference to sleeplessness in my drug information sheets was on the one about the steroids I took the day before, day of, and day after chemo.  Could this side-effect have kicked in a week late? It didn’t seem likely.

The second night, I tried progressive relaxation. My toes are relaxed. The arch of my foot is relaxed. My ankle is relaxed… By the time I reached my forehead and eyebrows, I was completely relaxed. Relaxed, but, alas, still awake.

So I tried visualization. I’m on a beach. A beautiful beach. The water is azure, and the sun warm on my cheek. I feel the gentle breeze, hear the waves lapping against the sand…  The lovely vision merely succeeded in making me want a vacation. And the bathroom.

Shattered by my sleeplessness, I finally began falling asleep. But as soon I began to dream, I’d wake up.

The dreams were telling: I am dressing to go somewhere – pulling on clothes and then taking them off because they aren’t right for the occasion. Still unsure I’m ready, I bend to pull on my boots. My mom strokes my head, as if I am a kitten, and her hand comes away with handful of hair.

Well, as we used to say in fourth grad, duh! Not ready to lose my hair. It didn’t take a genius to figure that one out.

Casting my mind back further, I remembered an earlier dream set in an antique store. Walking around with my mother and father, I knock something on the counter. The owner insists I must clean not just the counter, but the entire case. I don’t have time. Antiques plus my deceased father plus my mother at an earlier age equals the past. No time to clean up the past.

Wow, I think, this is easy. My subconscious is reminding me to focus on the present.

And, finally, I remember the last dream. There’s an accident involving lots of teenagers (probably underlying worry about my daughter during the season of graduation parties), and the sheriffs are trying to get them routed to hospitals. They need people to illuminate the accident scene with their car headlights in order to move more quickly. Mom and I are trying to get there, passing dozens of cars full of people, uncaring or unaware of the emergency, as they watch a movie at drive-in theater.

Trying to get to a place where I can help people. Was this a nudge to move forward with the book idea?

My relief at deciphering these dreams led me to believe the restless nights were due to psychological truths I’d been avoiding, and I went to bed on the third night fully expecting to sleep.

I didn’t. If anything, it was worse. My mind raced, jumping from one thought to the next. I would lose it if I didn’t get some sleep soon.

Since The Engineer had to work the next day, I didn’t want to keep him awake with my movements. I crept out of bed, and went downstairs to review the drug literature again.

Nothing.

Suddenly, I remembered the Levaquin (Levofloxacin) – a powerful antibiotic sometimes used to treat Anthrax. Dr. H had prescribed it only days before to prevent infection due to my low blood counts.  It had slipped my mind because it never occurred to me that an antibiotic could have such severe side-effects.

Realizing the  information sheet on Levaquin was in the bedroom with my sleeping husband, I sat down on the landing outside our bedroom and waited for morning. When The Engineer got up, I found the leaflet and read it once more. There, on the ninth page, under “Central Nervous System Effects” were the reactions I’d been experiencing. Restlessness, anxiousness, trouble sleeping, nightmares – it was all there.

I called the doctor’s office and left a message telling them I couldn’t take any more; I had to get off this drug. Dr. H was out of the office, but his colleague told me to come in so they could check my blood counts.

If the levels had improved enough, I could go off the Levaquin. If the numbers were still low, they’d give me something to help me sleep.

After a blood draw showed my numbers were still dangerously low, I ended up with a prescription for Ambien.

I whined. I didn’t want to take sleeping pills. The nurse’s response was just what I needed to hear.

“Well,” she said, “you can stay on the Levaquin and take Ambien. Or you can end up on the hospital with an infection.”

That night, I took the Ambien and slept.

Sleeping cat

Sleeping cat (Photo credit: Wikipedia)

 

Cancer Lesson #28: Morphine Dreams

Cancer Lesson #28: Morphine Dreams – Sometimes the side effects of painkillers are worse than the pain.

Rumor has it that Lewis Carroll’s Alice in Wonderland was written while he was high on some form of morphine.

Having spent several days in a similar haze of hallucinatory dreams brought on by morphine and Percocet, I can believe it.

For six days, falling asleep meant plunging into a world filled with action, high adventure and drama. Each nap was a fantastical long train of thought boarded by the most unlikely characters.

One particularly unrealistic thriller involved Las Vegas underworld “enforcers” chasing The Engineer and I through the city’s back roads and alleys. I knew it was a dream and struggled to awaken, but only managed to dodge the gangsters again and again as the action grew more and more farfetched.

It was like watching one of those movies where the director expects you to suspend disbelief one too many times.

When every reawakening is a heart-pounding escape back to reality, it’s hardly conducive to healing. At least it wasn’t for me.

I asked for alternatives.

“How about Vicodin?” the interns suggested.

Nope. Having had that drug a few times for dental surgery, I knew I didn’t like it either.

Finally, we settled on Tylenol 3. It left me only slightly loopier than the average person.

I could live with that. I’ve been doing it for years.