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 #60: The Odds Might Be in Your Favor, But Just Barely

Cancer Lesson #60: The odds might be in your favor, but just barely.

Not long ago, I listened to a book about cancer called The Emperor of All Maladies by Siddarth Mukherjee.

I ordered it from the library when I was first diagnosed, took one look, and sent it back. At that point, I was feeling too scattered to even consider reading a 571-page tome about the disease.

Eventually, however, I ordered it again, this time on a Playaway audiobook and listened to it on my way to and from work. It’s more than twenty hours long, so it took a while. It was fascinating stuff – a Pulitzer winner, in fact – so I didn’t mind.

What I do mind, and find to be absolutely incredible, is one of the statistics the author quotes within the first few pages. I’ve referred before to the fact that one in eight women will get breast cancer in her lifetime – a fact I couldn’t believe when I first heard it – but Mukherjee’s statistic is worse, much worse.

One in two men and one in three women will get cancer in their lifetime.

There’s really nothing more to say.

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 #58: Cancer Reminds Us We’re Going to Die

Cancer Lesson #58: Cancer reminds us we’re going to die.

Let me say upfront, if having cancer made you a better person, I’m glad.  And if you can view the disease as a “blessing,” well you’re certainly more evolved than I’ll ever be.

I’m three years out now (and counting every moment with gratitude), and my conclusion about having had cancer is this: What cancer does is remind us — rather forcefully — that we’re going to die.

Perhaps for some, this has the effect of making them a better person.
For others, not so much.

I only know how this knowledge has affected me.
For one thing, I’m a lot less patient when people waste my time — not exactly a “better person” kind of attribute.
On the other hand, if I want to take time from what I “should” be doing to do something I want to do, well, guess which wins?
I’m more likely to try things I might not have in the past. I’m also more able to say, “No, I’m not going to try that because I don’t want to.”
Each day, I am more grateful my mom is still with us, sassy as ever at age eighty-four.
At the same time, I grow ever more concerned about my friends who are still in treatment, and yet so thankful to have them as part of my life.

I’m more grateful overall, better able to pull myself back from daily stress by reminding myself of my mantra, “Happy to be here. Happy to have hair.” (And the second part is negotiable.)

We’re all going to die.  And that eventuality is statistically more likely to come sooner for those of us who have had cancer or are in treatment for it.
Or not.
People die every day in completely unexpected ways.

The challenge is learning to live every day.
Cancer has taught me to try.

 

Cancer Lesson #57: Welcome to the Sisterhood

Cancer Lesson #57: Welcome to the Sisterhood.

I’m not talking about that group that passes around those traveling pants (which is really too bad — with my Anastrazole and post-menopausal weight gain, I could use a pair of jeans like that).

Nor does this Sisterhood have anything to do with “doing it for ourselves,” though this hymn to our gender’s strength and beauty is a good thing to keep in mind when dealing with what is primarily a women’s disease.

This Sisterhood is one to which you already belong. You became a member the moment you were diagnosed, whether it was this morning or many years ago. You’ve earned your stripes or are earning them. You’ve paid your dues or will pay them. You’re one of us, part of the sisterhood of survivors.

It would be great if our group was more exclusive, with fewer members, but we’re everywhere.

Sigh.

My initiation happened at a garage sale, one of the few I went to while in treatment. If you know me at all, you know that statement alone tells you how narrow my focus was the spring and summer after my surgery.

“Are you in the Sisterhood?” asked the woman running the sale.

“Sisterhood?” Since I was bald as a cue ball, I knew her question probably had something to do with cancer.

“You in chemo?”

“Yep.”

“Well, welcome to the sisterhood. I’m two years out and counting.” She introduced herself, shook my hand, and gave me a hug.

Being part of the Sisterhood is a little like being pregnant. I can remember my big-bellied self sharing secret smiles with similarly bell-shaped women, knowing we were each part of the miracle of new life. But the survivor network is more subtle, with women and men who have dealt with the disease seeking you out to welcome you into the fold.

I was coming out of Starbucks one day when a woman whipped off her ball cap, pointed to her head and asked, “Are you bald for the same reason I am?”

I admitted I was, we compared notes on treatment and then parted, each wishing the other well.

And, although this post is about the Sisterhood, it’s also a reminder of the vast family of co-survivors – the husbands, daughters, mothers, sisters and friends who have struggled through this disease along with a loved one.

In an earlier piece, I wrote about two men who spoke to me, with tears in their eyes about their wives’ triumph over cancer. Another male acquaintance, who lost his wife to breast cancer, told me she died because she didn’t seek treatment soon enough. In sharing this tragic story, I sensed he was honoring her battle.

My oddest experience with the “family” occurred one weekend when my husband and I flew to Port Clinton Airport for a fly-in breakfast.

Their EAA chapter is rebuilding an old Ford T-Motor (Tin Goose) airplane. This project is particularly appropriate because from the 30s through the 80s, one of these lovely planes delivered people and freight between the islands of Lake Erie and the mainland. I remember seeing the aircraft when I first began visiting the area – a lovely place where a day away feels like a weekend. (Go here for more information on the islands: http://www.shoresandislands.com and here for more information about the plane: http://www.tingoose.org/aboutus.html).

Anyway, The Engineer and I were speaking to a man about the restoration when another man came up and said, “I think I know you. Didn’t you write that blog about getting your head shaved at Oshkosh?”

We eventually sorted out that he meant the post where seventeen men got their heads shaved as a show of support.

Wow. He had actually read my blog.

This was weird. The aviation community can be small, but how could this man – whom I’d never met – recognize me from a posting that was read by a couple hundred people at most?

“How did you find that post?” I asked.

It turned out he was friends with a Continental pilot (this was before they became United) who forwarded it to him. Her name was Renee something. Perhaps I knew her?

I shook my head. The only Continental pilot I know is male and wasn’t there for the great shave-off.

It doesn’t matter. The point is, this gentleman read and remembered the post because his wife is a breast cancer survivor.

He’s part of the family too.

And though I know not one of us would wish for you to go through this experience, we receive you with open arms and open hearts.

Welcome to the Sisterhood. May you find strength in knowing you are not alone.

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.