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.

Cancer Lesson #57: Sets Don’t Have to Match

Cancer Lesson #57: Sets don’t have to match.

Warning: If you aren’t interested in details about the after-effects of reconstructive surgery, you might want to skip this lesson.

I used to have a matched set.

You know – a matched set of them. Boobs, breast, tits, knockers, hooters, dueling banjos, marimbas. Call them what you like – I had a surprisingly symmetrical pair.

Probably because they were too small to be uneven.

Then came cancer, and my banjos were no longer dueling. Instead, one was trying to kill me. She left me no option but to cut her out of the picture. Or should that be out of the band?

Clearly, there’s no way you can remove a breast, replace it with stomach tissue, and expect it to immediately look exactly like the other.

Not that I was complaining. I was quite happy to wake up with two boobs, matching or not. It was one of the reasons I decided on immediate reconstruction using my own tissue rather than implants.

It was the right decision for me, which doesn’t mean it’s the right one for everyone.

Anyway, I was pleasantly surprised at the appearance of my new, er, marimba, even if it wasn’t identical to my other one. I was okay with that, though I wondered how my, uh, instrument would look when healed.

Dr. K said he could transform my asymmetrical beauties into a matched set.

I have to say he came close.

True, this involved having my new nipple tattooed so they were a similar color – that’s the TMI part – and I needed some touch-up surgery, which had been expected.

The weird part was that surgery involved liposuction.

On my breast!

Of all the places on my body from which you could suck fat, I never expected to have it taken from there.

Also, sometime after getting the tattooing done, I remembered that I’d considered, but decided against, getting a second tattoo when I turned fifty to match the one I got to celebrate my fortieth birthday.

Turns out I got one after all.

Life is bizarre sometimes.

Cancer Lesson #56: Do the PT.

Cancer Lesson #56: Do the PT.

It’s amazing what a little stretching can do.

You see, one of the side effects of an axillary dissection is nerve and muscle damage, which can affect the arm’s range of motion.

Because of this, I began reaching for things with my right arm immediately after surgery, stretching it beyond the comfort zone at every opportunity. I was determined to regain as much use of it as I could.

My reach exceeded my grasp during those first few weeks, but eventually movement became easier, and when I finally started PT I had a head start on things.

After I began meeting with my physical therapist, I did the exercises she assigned as often as I could manage (though probably not as often as I should have).

The effort paid off. A few weeks later she said I had recovered complete range of motion.

Since not every survivor reaches that stage — and there’s no way of knowing who will or who won’t — I was thrilled.

Later I had more therapy focusing on core strength.

This involved sit-ups.

Sigh.

Physical therapy made a huge difference , and I can now do just about everything I could before my diagnosis.

Still, the body remembers everything. Sometimes my stomach feels tight for no reason I can discern. Or my arm will ache after heavy exercise.

It’s a small price to pay, I think. I am so lucky to not just be alive but to be able to actually live.

Cancer Lesson #55: A Close Shave Can Be a Wonderful Thing

In honor of those who are actively fighting cancer of one sort or another, I’m pressing this post from Reading, Writing, Ranting and Raving from my original set of “Cancer Lessons” written several years while I was in treatment.

It’s set in Oshkosh, known to most for its kids’ overalls, but to the aviation community as the largest general aviation fly-in in the world (10,000 planes and hundreds of thousands of people) and written about a gesture some dear friends made partly on my behalf.

I hope you’ll click through to read it.

http://wp.me/pMOn5-ve

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/