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.

 

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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 #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 #50: Everyone Needs a Hand to Hold on to

Cancer Lesson #50: Everyone needs a hand to hold on to.

John Cougar Mellancamp sang about it in the eighties, and it’s true. Cancer treatment is challenging, with the difficulties being different for each person.

I found the constant needle jabs particularly distressing, so my “hand” was literal. Whenever I had to get a shot or have my port poked – and I’m sure the medical profession has a more technical term for that procedure – The Engineer or Darling Daughter came along to hold my hand.

Before chemo, I would have sucked it up. Now, three years later, I do the same. But when I was in treatment, I realized there was no harm in asking for a little comfort.

If that made me a wimp, I didn’t care. There are plenty of things about cancer that can’t be made any easier so if this one small thing helped, I determined to grab on to it with, well, both hands.

 

 

The point is, cancer treatment is hard enough without thinking you need to be brave every single minute. So quit trying to be a hero already. It’s okay to accept help now and then.

It’s a “whatever gets you through the night” kind of thing, with no right or wrong way to do it.

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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 #42: “My, What Bad Taste You Have”

Cancer Lesson #42: “My, what bad taste you have.”

Chemotherapy frequently results in a change in how things taste. When I started treatment, my inner brat constantly whined about how I would survive if I couldn’t taste my beloved Caramel Frappuccino Lights. It would have been more useful to ask what I would do with the money I saved by not buying them, but my childish self is always more concerned about instant gratification rather than money. I refused to think about whether or not I would survive cancer — I just assumed I would.

Dr. H. said some patients compare it to chewing on a metal fence.

Me, I thought it was more like eating a rubber bath mat after not brushing your teeth for a week.

I consoled myself with the idea that some breast cancer patients lose weight during treatment.

Alas, I proved to be in the 50% that gained.

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Cancer Lesson #40: An Appointment in the Chemo Chair

Cancer Lesson #40: An appointment in the chemo chair

Chemo appointments have some commonalities with beauty salon appointments, a fact I first noticed when Susan, Dr. H’s nurse told me she’d “book my chair.”

I began to think of other similarities.

  • Both appointments take place in a comfortable chair. True, the chemo chair is slightly more institutional, but it can recline – most beauty shop chairs don’t.  And you can’t beat that handy-dandy I-V pole and convenient built-in armrest for the arm taking the drugs.
  • As in a hair salon, there are specialists busily scurrying hither and yon, trying to keep clients on schedule. In the chemo room, however, the specialists are highly skilled nurses instead of cosmetologists.
  • Like a timer in a beauty shop, the beep from an I-V monitor will bring someone darting to your side to set the next step of your treatment in motion.
  • In both places, each client’s mixture is different.
    • Hair chemicals are used to straighten hair or curl it, to color a client’s locks or to bleach away their pigment, which makes me think we’d all be better off  learning to be happy with what we’ve got.
    • Chemotherapy chemicals (drugs) are also used for a variety of purposes. Neoadjuvant therapy is given before surgery, often to shrink a tumor to a more manageable size. With breast cancer, this type of chemo is sometimes offered so a patient can have a lumpectomy rather than mastectomy. Chemo may also be given as the main treatment, when the cancer has already spread beyond the primary site at time of diagnosis, or if it spreads after initial treatment. My chemo was adjuvant chemotherapy, meant to kill off any of those nasty sleeping terrorist cancer cells waiting to attack later. Since my surgery was deemed successful at rooting out the problem, my chemo was like life insurance, raising the odds in my favor that I won’t have a recurrence.

The similarities end there. Chemo drugs are poison. Medical staff wear gloves and facemasks for protection, and patients are instructed to tell a nurse if even a drop of one of the drugs touches their skin.

Also, those sitting in the chemo chairs aren’t looking for a change of hairstyle – few of them have hair to worry about. They are there because they are to fight the disease which lurks inside them.

The chemo chairs are full, every weekday from 7:30 to 4 pm, filled with people like you and me, who would like to see their grandchildren graduate, who don’t want to leave their children motherless or their spouse alone to raise their family. Sometimes, they are people who are dying and just want to stay alive a little longer.

A full house. Every hour. Every chair. Every day.