Cancer Lesson #10: It’s OK to Share Your Story on Social Media

Cancer Lesson #10: It’s okay to share your story on social media (if you want to). 

It’s a surprisingly effective means of sharing the news of your diagnosis and updates about treatment.

God knows, I never thought I’d break such horrible news to most of my friends via Facebook.

I mean, be serious. How freaking impersonal would that be?

Not very impersonal at all, as it turned out.

You see, I didn’t want anyone to think they were being underhanded if they shared my news. My getting cancer didn’t seem to warrant that kind of secrecy, and by broadcasting it on Facebook, I was sent the message that it was okay to tell people who might want to know.

So, after I told my family, my closest friends, and most of my co-workers, I put the news out there on good ole’ FB, and it worked out pretty darned well.

By the time I went into surgery, I think I was on every prayer chain in a two hundred mile radius. I know I had the support of everyone I knew.

Laugh if you will. I know my speedy recovery was due in part to those prayers, healing thoughts and good karma

Soon afterwards, I began blogging about the experience in what eventually became the cancer lessons you’re now reading.

But this type of public sharing isn’t for everyone, and that’s okay too. One thing I learned again and again is cancer is different for everyone.

 

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. 

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 #82: Everything Gives You Cancer

Cancer Lesson #82: Everything gives you cancer.

One of the (many) weird things about having survived breast cancer is that no one really knows why I got it. As you can imagine, this makes it hard to figure out how to avoid a recurrence.

That doesn’t mean there’s a shortage of opinions on the subject, in fact, quite the opposite. There are a plethora of behaviors, foods and environmental factors that have been linked to cancer.

Next time you’re bored (or even now), try typing  ___________ and “cancer” into your favorite search engine. Fill in the blank with whatever you like. I’d lay money your results will say that thing either causes or prevents cancer.

For example, “tea and cancer” (since I’m drinking a cup right now) rewards us with “Among their many biological activities, the predominant polyphenols in green tea―EGCG, EGC, ECG, and EC―and the theaflavins and thearubigins in black teas have antioxidant activity (12). These chemicals, especially EGCG and ECG, have substantial free radicalscavenging activity and may protect cells from DNA damage caused by reactive oxygen species.” from Cancer.gov. Excellent! I’ll go pour another cuppa.

“Reading and cancer”  brought up “A new study released Monday by the Centers for Disease Control has found a direct link between a particularly aggressive strain of ocular cancer and reading text on a computer screen …” Good thing I noticed “The Onion” heading at the top of the page, or I’d have been worried.

The Mayo Clinic says a glass of red wine is good for your heart, so let’s try “alcohol and cancer.”

From Breastcancer.org: “Research consistently shows that drinking alcoholic beverages — beer, wine, and liquor — increases a woman’s risk of hormone-receptor-positive breast cancer. Alcohol can increase levels of estrogen and other hormones associated with hormone-receptor-positive breast cancer. Alcohol also may increase breast cancer risk by damaging DNA in cells.”  But according to a  CNN health blog, drinking alcohol may improve breast cancer survival.

Which is it?  I know which outcome I favor.

Because there’s a lot of talk about pregnancy’s effect on the risk of breast cancer, I searched “pregnancy and cancer.” Here’s what the Susan G. Komen site said: “Although a first pregnancy may increase the short-term risk of breast cancer, it lowers the long-term risk. Pregnancy’s effects depend on your age when you first give birth.”

Confused yet?

“Exercise and cancer,” “soda and cancer,” “lemon juice and cancer,” even “vinegar and cancer” — according to someone somewhere they’re all connected to cancer.

I finally searched “things that give you cancer” and got several lists, including one from the UK’s Daily Mail. It tops out at 116 items and includes wood dust, outdoor air pollution, and oral contraceptives, along with at least 100 chemicals I can’t pronounce but have no doubt come into contact with.

I’ve concluded I must do what seems logical to me. So here are my personal anti-cancer strategies:

• Eat more vegetables (grown organically and/or locally when feasible) and less chemical-laden processed food (although I still can’t bring myself to eat kale).
• Exercise regularly. For me, this is at least three times a week and should be more.
• Know what’s important and what’s not worth worrying about.
• Take a multi-vitamin, calcium, and my hormone inhibitor.
• Enjoy time doing the things I love, with family and friends and sometimes by myself.
• Keep my sense of humor.

Will it work? No one knows.

As the American Cancer Society says ” … even if you do everything just right, the cancer still might come back.”  Later in the same article, they continue, ” … with our current understanding of how it develops and grows, cancer is still a mystery in many ways.”

There are no guarantees.
There never has been.

Still, to help with the keeping your sense of humor strategy, here is a link to  Joe Jackson’s  jazzy thoughts on the subject.
Click through. I think you’ll enjoy his song.

 

 

Cancer Lesson #81: I Am Hope.

Cancer Lesson #81: I am hope.

When I did the American Cancer Society’s Relay for Life a few weeks ago, I didn’t introduce myself with the rest of the survivors. This year, it felt a little too self-congratulatory, celebrating a result over which I had minimal control.

My mind began to shift, however, when the “Honorary Survivors” spoke. The “Junior Honorary Survivor,” who was about fourteen, talked about how she understands there are some things you can change and some you can’t. She said how important it was to focus on what we can do, instead of worrying about what we can’t, which I thought was very wise for one so young.

The adult spokesperson was a theirteen-year survivor of pancreatic cancer. This is almost a miracle, and that fact alone made me begin to think a little differently. (The Hirshberg Foundation for Pancreatic Cancer Research quotes the American Cancer Society as giving an average five-year survival rate of about 6%.)

My perspective began to change that day, but the lightbulb moment came when I was folding a load of laundry earlier this week.

I am hope. I am hope. I am hope. 
On t-shirt after t-shirt, the message stared up at me. 

I am hope.

Not because I did anything special.  And certainly not because I deserve it more than those who are gone. But just as my friends’ deaths were beyond my control,  I also don’t want to change the fact that I’m still here.

It’s time to focus on what I can control , to consider what I can try to be for others.

Hope.
A beam of light to those who are beginning treatment.
A voice of — if not reason — then at least perspective on what the future might look like.

I am the hope, that five years after surgery and chemo, you can still ride a bike, play soccer as badly as you did before, enjoy your family and loved ones.

I am the hope that, like me, you might take a little extra time to appreciate the beauty of our world — the green of the trees, the glimmer of sun on water, and yes, even the raucous cacophony of cicadas.

I am the hope that you will survive to become hope too.

And I am the hope that we will always remember those who didn’t.

Namaste, Pat, Dale, Maribeth, and everyone else who is no longer with us.
The light within me salutes the light within you, the light that lingers on in those you loved.

 

Cancer Lesson #76: We are not in control.

 

For most of my life, I’ve deluded myself into believing I am somehow in control.

Getting cancer swept that illusion away, but the lesson proved astoundingly easy to forget once I started feeling better.

Today, though, I was reminded once again just how helpless we all are.

We fool ourselves into thinking there’s always something we can do to make things better, whether it’s for ourselves or for those we love.

And sometimes there just isn’t.

Still, I find it hard to give in, to surrender this illusion of control, though I know it is only an illusion. It’s just so damned hard to realize there are some situations you can’t fix.

Maybe that’s why we find it difficult to deal with terminal or serious illness.

What do we do when nothing we do will help?

I don’t know the answer to that question. Maybe all we can do is admit we don’t know what to do and ask if there’s something we haven’t thought of.

And when we have the opportunity to do anything – however small – that will make someone’s life a tiny bit better, we should act.

Because there will be times when there’s nothing we can do.

Cancer Lesson #75: Tittoo Defined

Cancer Lesson #75: Tittoo Defined
Warning: This post may be a little TMI for some readers.
Tittoo: [ti-too]  verb, –tooed, -tooing, noun, plural -toos
verb: 
to color a reconstructed nipple by puncturing the skin and infusing dyes.
noun
: 1. procedure used to color the nipple on a reconstructed breast,
2. reconstructed nipple that has been colored by puncturing the skin and infusing dyes.

Sample Sentences
Verb: Part of the physician’s assistant’s job was to tittoo the breast cancer patients who had undergone reconstructive surgery.
Noun: Wow! My tittoo didn’t hurt at all — not like the tramp stamp I got in Vegas when I turned twenty-one.

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.

Cancer Lesson #73: Being Treated for Breast Cancer Expands Your Undergarment Wardrobe.

Cancer Lesson #73: Being treated for breast cancer expands your undergarment wardrobe.

Sorry, guys. I’m not talking Victoria’s Secret. Think Bridget Jones’s granny panties.

You see, while having tissue relocated from stomach to chest leaves a flatter stomach (Yay!), it also weakens the abdominal muscles (Boo!)

Hence, the temporary need for support knickers, aka “granny panties.”

For several weeks – or was it months? – these lovely undies were accessorized by a cotton contrivance of a brassiere with thick straps and Velcro closures. Sexy, this bra was not.

For a long time, even wearing a sports bra was painful because of my scars so I resorted to camisoles, and not the alluring lacy ones the word calls to mind. Mine were more like tank tops with lycra. Not bad, but definitely not the come-hither attire of a siren.

Then I had my “reconstruction revision procedure.” How’s that for a medical euphemism? (See Cancer Lesson #43 “A Glossary” for more and #57 “Sets Don’t Have to Match” to add to your breast vocabulary.)

Happily, the anesthesiologist knocked me out for the procedure. Unhappily, I work up wearing yet another surgical bra.

Sigh. I put on my big girl panties and got on with it.

Addendum: I would be remiss if I closed without sharing a link to “Otto Titsling” sung by Bette Midler. If you’ve never heard this paean to the subject of female support, click through and enjoy.

Cancer Lesson #72: Don’t Ignore the Lump.

Cancer Lesson #72: Don’t ignore the lump.

Each year when I go for my annual mammogram, I get a little nervous. Some breast cancer survivors find follow-up tests very distressing, but I always feel better after being checked. Ignoring a problem rarely makes it go away, especially when that problem is cancer.

If you’ve had breast cancer, you know people like to share their own close calls.

“I had a lump once,” they’ll say. “I was really worried, but it turned out to be nothing.”

Those are the good stories.

We also hear the other, not good stories. At least one person has told me “If I’d gone to the doctor when I first found my lump, my cancer wouldn’t have been so advanced by the time it was treated.”

The most heartbreaking of all was the man who said, “If my wife had gone to the doctor right away, she’d probably still be alive.”

You may be thinking I made that last one up.

I wish you were right.

So, here’s Cancer Lesson #72, repeated because it’s so important: Don’t ignore the lump, no matter where it is or how small.

If I’d ignored mine, I’d still have cancer, just more widespread and, oh yeah, more likely to kill me.

Thanks. I’ll take that mammogram.

Cancer Lesson #71: Cancer Makes You a Bad Risk

Cancer Lesson #71: Cancer makes you a bad risk.

I’m a bad risk.

I know because Metropolitan Life Insurance sent me a letter telling me so. It seems they “…considered carefully the Statement of Health … submitted requesting Dependent Life benefits” and “…find it necessary to decline the request for coverage at this time because of a history of breast cancer.”

Well. Beneath all the wordiness and unnecessarily capitalized words lurks a bluntness that took me by surprise.

To be honest, I expected them to turn me down, having long suspected insurance policies are a like mortgages – in order to get one, you must prove you don’t need it.

I’m sure their decision is backed up with statistics galore, but what do they know?

No one can predict who will get cancer or if it will return.

Not even MetLife.