Five Years = Cured?

                Just about at the exact time of my five-year cancerversary my boob broke.  

I woke up in a hotel room to caustic slime oozing out of an inch long fissure in my silicone prosthesis, gooping  up the inside of my sleep bra and burning my skin.  I should have paid attention when I got up to pee the night. Some part of me knew that sleeping on my stomach while wearing my prosthesis in a loose sleeping bra wasn’t a good idea.  But I was in a hotel—a Euro-style hotel specifically, with several rooms sharing a bathroom.  Which meant that when (not if) I had to pee I had to go across the hall.  Being relatively well-endowed on my good side, there was no way I was going to go into a hotel hallway lopsided.  So, I wore my prosthesis to bed.  Besides, if there was a fire in the night and I had to leave the hotel in a hurry, I didn’t want to be rummaging around in a smoke-filled room for my boob.  Evacuating without it would be out of the question.  God knows I wouldn’t want to be rescued missing critical parts—firefighters are cute!

I was on a low-budget trip, visiting my son, Eric, who was away at college. He was about to arrive for breakfast, so I wrapped the leaking boob in a bandana, shoved it back into my bra and went to ask the desk clerk for some duct tape.  Back upstairs, I patched the hole and when Eric arrived we laughed at my utilitarian practicality. But it wasn’t really funny. Nothing makes a woman feel attractive like a fake boob patched with duct tape.  Or more worried about money than knowing you just sprung an unexpected $300 leak while on vacation.

After my son headed off to classes for the day, I headed to Nordstrom’s. Here in the Pacific Northwest, Nordstrom’s stores are everywhere and they do an excellent job of fitting women with tricky issues—like a missing boob. They take insurance for the prosthetic and even “pocket” the bras for free, meaning someone hand-sews a pouch for my prosthesis to slide into so it doesn’t escape out the neck of my shirt when I bend over.  (Which has happened–do you want a description of the sound of silicone hitting a wood floor in a silent room?  I will write you another story later.)  Combining this with generally excellent and helpful (if somewhat snobbish) clerks, and Nordstrom’s is well deserving of its reputation for customer service

Despite how helpful the salespeople may be, I HATE going into the lingerie department of any store. It is torture to be surrounded by an entire roomful of feminine items that I can no longer wear. I used to love pretty lingerie—when my mom and daughter went to Paris I asked them to bring me some back. But nothing looks right on me anymore, all of it punctuating what I no longer have by the emphasis on what I still do.  The lingerie department reopens a wound of loss that never really heals all the way, despite all I have done to accept that femininity and beauty do not lie in the physical.  I especially hate having to ask a perky twenty-something for help with something that is so far beyond her comprehension.  When I ask for something pretty, she’ll pick things that don’t work with a prosthetic, prolonging the process and deepening my depression.  If I just ask for something that works with the prosthetic, out comes the uber-functional grandma-gear that makes me feel old and frumpy.  The process reduces me to tears immediately.  The only thing that saves me is watching for the quick flash of shock when they see the big-ass dragon tattoo that covers my scars.

Angry that this was how I have to spend time on my vacation, I was feisty when I walked into the Portland store.  I didn’t want to be doing this in a strange city, I needed it to be done fast, and I knew I wasn’t going to like any part of it.  As expected, when I explained I needed help with a prosthesis, the Nordstromy-looking young woman at the counter asked me to wait for the “fit specialist”.  But the woman who approached me was decidedly un-Nordstrom-ish.  In fact, she looked quite nearly hipster-ish, maybe even hipster mom-ish. At the very least she looked like someone I could talk to, someone closer to my clan than not; she seemed genuine and earthy instead of the painted-veneer type I was used to.  Of course she could help me.  Of course we would be quick. After all who wants to do deal with this on their vacation?  Indeed.

A phone call to my doctor for a prescription was the next step.  “Hello, I am a patient of Dr. Scarr,” (I kid you not, that is his name) “I had an accident while on vacation and my prosthesis broke.  I need a prescription written and faxed for a new one right away.”  I waited on hold while a nurse was summoned.

It was a dude.

“Um, I understand you need a prescription from Dr. Scarr?  Your, um, your prosthesis broke?”  He really did say um. He sounded like he was 20.  I wonder how many women called for a new boob.  I explain the situation.  I also wanted a prescription for bras while we were at it. The damage done by surgery left me in constant pain and unable to wear the same bra more than one day in a row because of how they rubbed. That means a variety of choices in my drawer and most of mine are getting shabby. Shabby bras for a lingerie lover do nothing for self-esteem. I figured since we were already in this thick, we may as well do the whole nasty deed.

He cleared her throat. “A bra?”

“No, BraS. Plural.  They are covered as well.  Durable medical equipment.  I don’t know how many I am going to get and insurance covers $30 of every bra I buy.  So, no limit on the number”.  When you have only one boob, lingerie is now durable medical equipment . It really reinforces how sexy life is post-cancer.

He cleared his throat again.  Maybe he had a cold.  “Okay. Bras.  And a prosthesis.”  He squeaked, “And who do these prescriptions go to?” Geez, I wouldn’t have wanted to tell him I had an itch someplace embarrassing.

“Nordstrom’s” And then the inevitable surprised response.  But the prescription was faxed and that was all that mattered.  I rejoined fit specialist Dianne.

Dianne pulled one reasonably priced and not terribly ugly functional bra off the rack and we headed to the dressing room.  It was perfect, and this time I cried because it was so easy. Diane wasn’t cut from a Nordstrom’s salesperson mold, she understood completely and even rushed having the bra pocketed (for free) so I could have everything later that afternoon.   It was the best customer service I have ever had.

But, easy as it was, I was exhausted and a bit despondent when I left.  Depending on the day, it can be devastating just to face a mirror, and being surrounded by all those silky see-through chemises and lacy things that proudly push up the girls always sends me over the edge a bit.  Once a well built 32 DD, now only the left remains. The other side of me is flat as a teenage boy’s chest, skin pulled tight over scar tissue covered by a dragon tattoo from armpit to a hip left more ample by treatment and rushed menopause.  Bad-ass as the tattoo may make me seem, I still long for the full breasted sexiness I once flaunted.  I am filled with loss once again and gratefully skitter away to lick my wounds in a coffee shop.

My ever-generous and extraordinarily compassionate son went with me to pick up my items later that day. He stood calmly by my side as we waited in the middle of my pink frilled lacy nightmare world once more, joking with me about glow in the dark underwear and bra cups large enough to hold a watermelon. His presence has been a critical part of my healing. He took care of me when my boyfriend could not and has always been willing to talk about issues that far exceed the norm for mother and son discussions. I was grateful for his support, even though I knew the duct-taped boob would later make the rounds with his roommates as yet another “My mom is so awesome that she….” story.

The nice thing about our current health care is that laws have been passed so all insurance has to cover breast prosthetics.  However, most, like mine, make “durable medical equipment” – like boobs and bras – fall under the deductible, even though it is not possible to live comfortably without either.   Most insurance now is so expensive that people like me have high deductibles in order to be able to afford basic coverage.  While I didn’t have to pay cash out-of-pocket for my $400 purchase, I did have to give them a credit card number to charge the deductible to when insurance finishes up, one to five months in the future.  With deep resignation, I gave Dianne a card number that will either fail to go through, or will thoroughly disrupt my ability to buy groceries or gas. What was I supposed to do?  It wasn’t something I could plan for, or make do without and I needed a boob now.

The plan was to ask for a single purchase credit line increase on the card for an emergency.  They used to do this for people for things like broken cars or emergency travel.  Apparently not anymore.  Or maybe it was just my circumstance. Have you ever had to call your credit card company begging them to increase your limit by $500 for a one time emergency purchase from Nordstrom’s?  I will warn you—they laugh.  And they don’t raise your limit.

Insurance needs to change how it handles prosthetics and deductibles.  Women should not have to go without a breast due to insurance squabbles. No one should go without a wheelchair, nebulizer, or a prosthetic anything, or make do with something broken or inadequate just because their insurance deductible hasn’t been met.  We have already fought for our lives. We shouldn’t have to keep being reminded of our losses.

Today, I am officially “cured” of cancer.  They say that when you have made it past the five-year mark of a cancer diagnosis without a re-occurrence, then you are cured.  But cancer is never really over.  I still have to cope with the emotional challenges of being handicapped in a very breast-oriented world.  I still deal with the very real physical repercussions of treatment from a disease that’s only cure was to chop off a body part and then nuke my chest with enough radiation that it may likely cause another cancer somewhere else.  I still have “phantom limb” sensations, no immune system and constant pain. Cured, I will always worry about every ache and pain and question whether I will survive until I am old.  My friend Caryn says that her children get scared every time she has so much as a cold.  Once you have had cancer, there is never a day for the rest of your life that you are not a survivor. For most of us, not a day goes by that we are not in some way impacted by the disease.  Cure does not mean we get to forget it and move on.

So here is to five years.  A little celebration and a new boob for me to mark the occasion.  In the next five years I hope that mirrors and lingerie departments begin to feel like the illusions they are. Globally, I wish for a little less pink and more down-to-earth action. Let’s not only find a way to prevent this disease but humane ways to treat it and the people affected by it. Survival goes on forever. Please continue to support survivors and their emotional and physical needs.  Five is a number.  It is a nice one.  But it is not a cure.

(If you want to contribute to the breast-cause, there is a link at the top of the page to make a donation! I promise to shake my boobies—the one that shakes at least—in your direction in gratitude. )

Caryn and Me, 4 and 5 years cancer free respectively.Caryn and Me, 4 and 5 years cancer free respectively.

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