Cancer Lesson #83:Stop Viewing Pinktober Through Rose-Colored Glasses

Cancer Lesson #83: Stop viewing Pinktober through rose-colored glasses.

It’s October 1, and today someone was diagnosed with breast cancer.

Correction: The diagnosis wasn’t handed to one person, but to about 680 in the U.S. alone (calculated using the number of expected diagnoses in 2016 from the statistics at Breastcancer.org).

Over 600 people have just had their lives hijacked — temporarily or permanently — by a disease that a week ago belonged to someone else.

Breast cancer is now theirs, a choice they didn’t make and one in which they had no say. Neither heroes, nor victims, these men and women are just people  — like myself and countless others — who have been handed a diagnosis they probably weren’t expecting and aren’t quite sure how to face.

The same thing will happen tomorrow, and the day after, and the day after that — long after the “breast cancer” merchandise, festooned and beribboned in pink, is languishing on the clearance rack.

And guess what — announcing your relationship status or the color of your underwear on Facebook won’t help any of them. Many of the pink articles you see in stores won’t either. They are produced merely to line the pockets of those companies that produce them.

Some argue these activities and merchandise raise awareness of the disease, but I think by now we’re all pretty aware. Don’t you?

Perhaps it’s time to move beyond awareness to actually doing something.

If you happen to find Pinktober a good reminder to support breast cancer research, I thank you. But I would ask that you make sure your contribution makes a difference, that your hard-earned money is going to a charity that actually does something to prevent, treat, or research breast cancer or to support its patients. You can do this by following the simple guidelines at Thinkbeforeyoupink.org. Should you choose to delve further into this website, you’ll see it raises other valid concerns about the commercialization of my disease.

I’m not a curmudgeon about this issue, completely against the “pinking” of breast cancer. In fact, if you follow this blog, you know when I was first diagnosed, my co-workers wore pink ribbons to show their support, a gesture that moved me to tears. So, my relationship with the color is somewhat conflicted. (See “Cancer Lesson #25: The Wearing of the Pink.)

But breast cancer isn’t pretty. No disease is, and all the pink in the world won’t change that. I find as the years pass, I object more and more when companies turn an illness into an opportunity to not only profit, but to sexualize a disease that can kill. (See Psychology Today: “Do Sexy Breast Cancer Campaigns Demean Women?)

I know I am one of the lucky ones. Five years out, I’m still here to write complain about this issue. For this reason, I rarely talk about my scars, about how they sometimes ache when the weather changes, how I can feel them pull when I stretch too hard, how wearing a bra gets uncomfortable after a while.

Then there’s the Anastrozole side-effects: osteoporosis (which my oncologist assures me will remedy itself once I’m off the drug), hot flashes that make it impossible to get a full night’s sleep, the padding of extra pounds I can’t seem to lose, and hair that falls out by the handful (not as extreme as it was with chemo, but disheartening nonetheless).

Because I know I’m lucky, it’s unusual for me to discuss the physical reminders of my experience. I write more about how cancer affected my outlook, my way of thinking about the future and about the realization that we all die.

Still, having cancer changed me both physically and mentally, and though I cannot tell you exactly how it will affect those diagnosed today, I know it will change them too, in ways they can’t foresee.

So, the next time you get a Facebook post that breathlessly asks you to share a “girly” secret status to support breast cancer, think of the 680 people who got the news today and whether that status is going to make a difference to their lives. (And, by the way? We all know men get breast cancer too, right? So, the “girly” idea doesn’t quite fly.)  Before you buy that new lipstick or pair of socks to “support breast cancer,” find out exactly how your purchase is making a difference.

As I said, I’m lucky. I am able to do all the things I did before I got cancer — ride my bike, play soccer as badly as I ever did, go flying with The Engineer. IMG_0333

On this first day of Pinktober, I’m praying the 680 people getting the diagnosis today are able to share a similar future.

Addendum: In reviewing this post before publication, I must add three things. First, I should say I have joined in the “girly” Facebook games in the past and admit they could be viewed as just having fun. That’s OK, as long as the participants realize they have little to do with supporting breast cancer patients. Second,  this post is my opinion. I would never presume to speak for other breast cancer patients,  former or current. And last and most importantly, this is an issue where the patient gets the final say. So if you want to know how you can best support someone who’s been diagnosed, try asking them. 

 

 

 

 

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 #61: Three Negatives Don’t Make a Positive

Cancer Lesson #61: Three negatives don’t make a positive.

A few weeks after I finished treatment, one of my favorite cousins was diagnosed with breast cancer, beginning her own journey down the same same scary path I had so recently traveled. But her path took a different turn when she learned her cancer is triple negative.

You see, breast cancer has many variations. Pathology may show a tumor responds (is receptive) to estrogen (ER), progesterone (PR), human epidermal growth factor receptor 2 (HER2), or any combination of the three.

If cancer is ER or PR positive, hormone inhibitors are used to help prevent recurrence. A cancer that is HER2 positive tends to be more aggressive, and is treated differently. (WebMD has a good explanation of this (http://tinyurl.com/34xafpm).

But my cousin’s cancer is triple negative, meaning it isn’t ER, PR or HER2 positive, hence the name, “Triple Negative Breast Cancer” (TNBC).

Because TNBC isn’t receptive to hormones, hormone inhibitors aren’t a treatment option, so she was treated with a more aggressive chemo regimen than mine, as well as radiation.

I share these facts because people sometimes assume all breast cancer is treated similarly, varying only by stage and/or size of the tumor(s). I hope you understand now this isn’t the case.

And with HER2, it seems not only can a negative be a negative, a positive can be a negative too.

For more information about TNBC, please visit http://www.tnbcfoundation.org/index.html.

Note: I was HER2 negative and slightly ER and PR positive so I take Anastrozole/Arimidex (a hormone inhibitor), which is effective for post-menopausal women. Tamoxifen is used for women who are pre-menopausal. Here’s a good explanation of the differences from the Dr. Susan Love Research Foundation website: http://tinyurl.com/m4p7hgb.

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 #??” Everything Has Side Effects

Cancer Lesson #??: Everything has side effects

Let me be clear. I’m very, very glad to be here.

And as side effects go, gaining a few pounds is a trifle, an infinitesimal detail scarcely worth mentioning.

I’m mentioning it anyway because it’s a good reminder that every cancer treatment has side effects.

My friend Pat’s maintenance drug makes her blood pressure go up, so she has to take another pill for that, which has its own side effects.

My drug, Arimidex/Anastrozole (an aromatase inhibitor), is meant to increase the time before cancer comes back, reduce the risk of it spreading, and reduce the risk of a new cancer developing.

Well, yay for that!

That doesn’t mean I have to like the side effects.

The biggie with Arimidex/Anastrozole is bone thinning and weakening, which I’ve managed to avoid so far.

Yay again!

But there are others: bone and joint pain, nausea, vomiting, hot flashes, weakness, fatigue, headache, loss of appetite (yeah, like that ever happens to me!), constipation, diarrhea, heartburn, weight gain, mood changes, difficulty sleeping, dizziness, vaginal bleeding, vaginal dryness, dry mouth, dry skin, cough, and hair changes.

So, here’s the thing: I’m happy to take anything that might keep me walking longer on this earth. And most of the time, I will gladly put up with bone twinges, personal heat waves, and yes, even weight gain.

Only sometimes, I want my old body back, that pre-hot-flash, semi-skinny one I once took for granted.

It’s then I remind myself that things could be different.

You see, at least I’m here to have side effects.

Countless others weren’t so lucky.

Cancer Lesson #??: Some of Your Friends Will Get Cancer Too

Cancer Lesson #??: Some of your friends will get cancer too.

Another week.

Another friend diagnosed with cancer.

Three years ago, when I found out I had breast cancer, I told a friend that I was the “one” of the one in eight women who got it. I joked that I’d taken the hit for our department.

Less than a year later, that friend was diagnosed with ovarian.

A favorite cousin began treatment for triple negative breast cancer the week after I finished.

A year and a half ago, my boss had a double mastectomy after learning she had lobular cancer.

Another woman in our library system, someone I knew well enough to like and admire, was diagnosed and died a few months later of a different kind.

Mid-summer this year, doctors told a co-worker and friend that she had ovarian, which actually turned out to be GIST (gastrointestinal stromal tumor).

She’s in treatment.

And now, another one.

I have no words of wisdom to offer. Only this: Know that in the end, everyone makes their own choices, fights their own battle, goes through their own hell.

Be ready. They’re going to need our support.

Cancer Lesson #??: Some Cancers Are Preventable

Cancer Lesson #??: Some cancers are preventable.

If you’re a woman, you have only a one in eight chance of getting breast cancer in your lifetime.

I say “only” because your chances of getting some form of cancer in your lifetime is actually one in three.

One in three.

An incredible ratio in every horrifying sense.

If you’re a man, the news is worse. You have a one in two chance of getting cancer in your lifetime.

Don’t believe me? Take a look at the chart on the American Cancer Society website (http://tinyurl.com/cancerchances).

Take heart. Although no one is 100% sure what causes every cancer, there are many things you can do to lower your risk.

This mostly involves making the logical choices you’d make if you want to live a long and healthy life. Exercise regularly. Don’t smoke. Eat a reasonable diet. Don’t drink too much.

There is one type of cancer,however, caused almost exclusively by single factor — exposure to asbestos. That cancer is mesothelioma.

Mesothelioma has a long latency period, but is extremely aggressive. This means a person could have it for years, then be diagnosed as being in a late stage of the disease when the survival rate is considerably lower.

Obviously, we need to avoid asbestos. This lowers your risk factor to almost zero.

Until I wrote this post, I thought this would be simple because asbestos is banned in the U.S., right?

Wrong.

Here’s what the EPA says about the material, “On July 12, 1989, the EPA issued a final rule banning most asbestos-containing products. In 1991, this regulation was overturned by the Fifth Circuit Court of Appeals. However, as a result of the Court’s decision, only a few asbestos-containing products remain banned.” (http://www2.epa.gov/asbestos/asbestos-laws-and-regulations#epalaws)

Also, “On July 12, 1989, EPA issued a final rule banning most asbestos-containing products. In 1991, this regulation was overturned by the Fifth Circuit Court of Appeals in New Orleans. As a result of the Court’s decision, the following specific asbestos-containing products remain banned: flooring felt, rollboard, and corrugated, commercial, or specialty paper. In addition, the regulation continues to ban the use of asbestos in products that have not historically contained asbestos, otherwise referred to as “new uses” of asbestos.” (http://www2.epa.gov/asbestos/asbestos-ban-and-phase-out-federal-register-notices)

So, we can still be exposed, as were countless others before we knew the dangers. If someone in your family worked in the building trade, chances are they came in contact with asbestos, which means you probably did too since the fibers cling to clothing, thus invading the home.

Fortunately, there’s now a blood test that measures the biomarkers of Mesothelioma long before it can be otherwise diagnosed.  To quote the Mesothelioma Cancer Alliance, “Scientists have been working on new tests that strive to diagnose the disease at an earlier stage. For example, the Mesomark® assay is a simple blood test that measures the rate of Soluble Mesothelin-Related Peptides (SMRP) in the blood. This biomarker is released by mesothelioma cells into the bloodstream and SMRP can be elevated for many years before symptoms appear and an actual diagnosis of the disease is made.” (http://www.mesothelioma.com/mesothelioma/prognosis/)

As with any cancer, early diagnosis is key to survival. Catching the disease in its early stages makes it imminently more treatable, and becoming aware of the risk factors makes early diagnosis more likely.

As I said earlier, there many ways to lower your risk of getting cancer. Avoiding asbestos is certainly one of them.

For more information on this disease, visit http://www.mesothelioma.com/mesothelioma/information/

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 #47: We Rarely Get What We Deserve

Cancer Lesson: 47: We rarely get what we deserve.

People were overwhelmingly kind to me when I was in treatment. In addition to the cards – which I know numbered over a hundred – I received flowers, fuzzy blankets to keep warm during chemo, a lovely handmade wool wrap, more meals than I could count, books (both to read and to color – my friends are nothing if not creative), visits, several soft hand-knit caps for cool nights, plants, home-baked goods, candy and Caramel Frappuccinos.

I’ll admit I hinted pretty heavily to get the Caramel Frappuccinos, but mostly, I felt undeserving of my friends’ generosity and fretted about to repay such kindness.

Then, my friend Kathy – who’s smarter than me – said, “Don’t you know that’s what grace is, Kym?”

She was right. I didn’t ask for those things (other than the Caramel Frappuccinos <blush>). And I understand now that most people share an inherent compassion that makes them want to help others.

So, if you find yourself besieged with goodies, try not to feel guilty. Instead, accept the gifts with grace and gratitude  and reflect on how lucky we are to have such people in our lives.

Because no one “deserves” to get cancer either.

“In spite of everything, I still believe that people are really good at heart.”

 — Anne Frank

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Cancer Lesson #41: A Cancer Glossary

Cancer Lesson #41: A cancer glossary

I could never be a doctor or nurse, or even an aide. For one thing, the medical field isn’t for wusses, and I believe we’ve already established my legitimate claim to the title of Head Wuss of Wussville, USA. Doctors and nurses deal with blood, pus, puke, piss, and more shit than the rest of us can even imagine. Frankly, I got enough of that when my daughter was a baby.

Then there are the pesky math and science requirements. Basic biology was enough for me. Even then, I refused to do the blood type experiment required to pass the class. It was bad enough to get a shot when I was sick. No way would I stick myself voluntarily. (I passed the class anyway, probably because the teacher didn’t know how to handle the intransigence of an honor roll student.)

To say I admire anyone working in the medical field would be an understatement. I grovel at their feet in abject admiration for being proficient at a job that must be trying on the best of days. In the course of my battle with (journey through?) cancer, I received better care than I ever would have expected.

I’m lucky to live within driving distance to Cleveland, a city known for its fine hospitals. Of these, “The” (never spoken without a hushed capitalization) “Clinic” is probably the most well known.

But I didn’t go to “The Clinic,” and I didn’t go to “University” either, though I’m sure both provide excellent care.

My OB/GYN is based at Metro, so I went there.

Metro is the other hospital, the one people refer to as “urban.” Where they warn you to keep your doors locked. The place you’re more likely to see a prison inmate, shackled and cuffed, or a welfare mother, than a suburban matron like me.

Still, I dare you to find better care anywhere.

At Metro, my surgeon didn’t give me referrals; her secretary gave me appointments, scheduled on the same day so I didn’t have to drive in multiple times. My OB/GYN called to say how sorry he was to hear of my diagnosis and came to see me on his first day back from a two-week leave.

The second night of my hospital stay, I awoke around midnight to find my plastic surgeon at my bedside, dressed as though he’d been to the theater. He was just checking in.

And my Metro-based oncologist still calls to let me know how my tests and blood work turn out.

But, I digress. What I’m trying to establish is my unbounded respect for anyone working in the medical field before I poke a little fun at some of the language I heard during my “Cancer Year.”

Below, in no particular order and as a service to mankind, please find “Kym’s Glossary of Medical Terminology.” Feel free to print out this handy guide for your next visit to the doctor.

Procedure: Feels like an operation; costs like an operation, but if it were an operation, we’d have to keep you overnight, and we’re sending you home.

You may feel…

     A pinch: This will feel like you’re being jabbed with a needle. Because you’re being jabbed with a needle.

     Pressure: Imagine an elephant. Balanced on one leg. On your body.

     Discomfort: As Sarah McLachlan sang: “Hold on. Hold on to yourself. This is going to hurt like hell.”

     Some pain: It will be agony, but you’ll live. At least, we hope you will. Disposing of bodies is so inconvenient, and we’re short-staffed today.

     Drowsy: Hey! Wake up. I’m talking to you.

Someone will be with you in a few minutes: You did bring a book, right? No? Then, enjoy this March 2007 issue of Triathlete. Or perhaps you’d prefer a nice catalog of cancer hair accessories. I hear they even sell bangs and sideburns you can clip on to your scarf or hat.

Sorry, we’re running a little behind: I hope your book is a long one. Like the Dictionary. Or Bible.

This looks like a good vein: I hope it’s a good vein because it’s the only one I can find.

Sorry that didn’t work out: I’m sorry that vein didn’t work. You may not believe it, but I actually don’t enjoy jabbing people with sharp instruments. Especially sniveling, weak-kneed, veinless wonders like you.

Be sure to call if you need anything or have any questions. Here are the numbers: I mean it. Call! We’ll call you back more quickly than you expect.

As a special bonus, in case (unlike me) you are ever without a book in the examining room, I offer the following suggestions for your entertainment. (And again, I’m joking!)

  1. Bet your husband or, better yet, your teenager they can’t hack into the hospital computers. Offer monetary incentives.
  2. One by one, start calling the numbers listed on the phone. Identify yourself as Dr. Jones and tell whoever answers you need help, stat, in Examining Room B.
  3. Steal an assortment of latex gloves. They’ll be handy for your next home improvement project.
  4. Rearrange the supplies in all the drawers and cupboards.
  5. Measure just how much paper is on that little roll they use to cover the exam table. Go on; I’m sure they can roll it back up and use it.
  6. Pop your head out into the hallway and ask everyone who walks by, “Are we there yet?”

Got any definitions you’d like to add? Drop a comment. Everyone who does will receive a free pair of latex gloves and a gauze pad.

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Me and the Man Who Held My Hand Through the “Discomfort” of Breast Cancer Treatment

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