As hard as I try, I can’t go back to who I was. There’s nothing like a bad haircut to remind me of that.
I’ve had short hair since chemo ended, now four years ago. My body rebelled after being doused for months in that chemical wash. My nails and hair particularly made their dissatisfaction known, splitting and breaking and refusing to grow. I tried nail hardener and special shampoos, but the only thing that helped was time. My nails at least have started to grow again and have stopped splitting. My hair, though, remains fine and limp and every so often I panic, sure I have a bald spot. It’s no longer the lush locks I had.
I gave up bangs I’d worn since kindergarten for a side-swept pixie cut when my hair finally started to grow back after chemo. It looked cute and was a departure from the curly, salt and pepper mane that replaced the long, golden hair I’d lost.
Over time, I let it grow in a bit thicker, going for the Robin Wright look in House of Cards. It suited me, even though I never quite felt I recognized the woman looking back from the mirror.
For the first half of this year, I let my hair grow. I found a haircut that looked something like my old look, albeit a shorter version. And it had the bangs I’d forsaken. I was sure it would be the perfect cut for growing it long again.
So today, I went to my hair stylist – who rescued my wigs from over-washing-frizz-out as I cried and talked me in off the ledge of vulnerability during my baldness – and showed her the picture of the new look I wanted. She sized it up, told me I’d need to go a bit shorter in the back, but agreed it could be done.
Except it couldn’t. My bangs no longer sit right on my forehead and the shag layers are flat, making my hair look more like a helmet than tresses. I came home, threw water on it and parted it back on the side, giving it the pixie look I started with four years ago.
Back then, it made me happy. Today, it makes me feel stuck, like the movie Groundhog Day. Every time I think I’m ready to move forward, life takes me back to where I was to start all over again. Whether it’s a cancer recurrence or a starting a new drug treatment or a bad haircut. It’s like a merry-go-round I can’t get off of and there’s no brass ring to grab.
So here I am, back to being a woman I don’t recognize, but no longer having a meltdown over it. Sometimes you walk through a time warp and there’s just no going back. I’m living in such a time.
Turns out CVS Caremark has found a cure for cancer: induce a heart attack so there’s no fear of succumbing to the deadly disease.
This was Britany’s quest, I’m sure, when she called me to tell me my new prescription had arrived.
Ibrance, the new drug I’ve been prescribed, is just out of development, giving it a hefty price tag. I can’t purchase it any longer at my local pharmacy, where I have compassionate friends. I now need to go through a health-insurance appointed specialty pharmacist. I should be grateful that I’m getting an actual live person to call me, rather than an automated recording to deliver me this news. Shame on me, I’m no
“There’s a 70 percent co-pay,” Britany announces matter-of-factly and slightly annoyed.”That amounts to $4,380.”
She pauses, waiting for a shriek. When I don’t comply, she adds, “That’s a month.”
“You do realize this is a life-saving medication?” I reply, brittlely and equally annoyed, even though I feel a hot wave of fear wash over me, tying a knot in my intestines where Britany’s bombshell has gone off.
“Well there’s a number I can give you to call Pfizer for co-pay assistance,” she says.
I grab a pen and she rattles off the number.
“If you’re accepted, call me back,” she says, ready to sign off. I can’t see her, but I can feel her reach to disconnect the call.
I get that Britany probably makes only $10 an hour and has problems of her own and that while her job is obstensibly to make phone calls, in truth, it’s to drop bombshells into the laps of the dying or nearly dead and then walk away, without concern. That takes a great deal of desensitization, which I should have empathy for, if not a degree of awe.
“Is there a number I should call you at?” I ask before she’s able to finish the task.
“Oh yeah,” she says, then rattles off another 800 number. She knows that we will likely never speak again. Still, I can hear in her voice a slight change that says “Oh, this one isn’t the walking dead only the slightly dead. Maybe she’ll have a chance.”
I immediately dial Pfizer, realizing that Britany has delivered me this news after hours and there’s a good chance no one is around. During a 20-minute, nail-biting, Muzak infused on-hold wait , I realize how much I already miss my local pharmacist and consider running down there to load up on anti-nausea medication to get through the remainder of my life if this is any indication of how it’s going to go. Finally cheery Ian answers. I tell him about my conversation with Britany. He’s happy to oblige me and directs me to an insider Web site where I can immediately apply for assistance.
It turns out, there’s a three-question quiz, which I pass. I tell Ian I can take it from here, as the next screen just asks for information so it can print me a copay card. I tell Ian he’s saved my life and wish him a winning lottery ticket in return. This makes Ian even cheerier.
I fill out all the two-starred fields required, but the Web site won’t accept my submission. The panic returns. A carrot dangled in front of me. I call Pfizer back. Gratefully, the call goes through immediately. This time I get David, whose a bit more somber than Ian, but equally eager to help. We go through what I’ve done, what I haven’t done, what’s checked, what isn’t, what the screen says, what it doesn’t say. He finally diagnoses the problem as the laptop I’m using.
“You’ll need a desktop computer,” he said.
“You do realize desktops are obsolete, that no one has them any more?” I answer.
“Well try your phone.”
“I don’t have a smart phone,” I say, realizing that technologically I’m stuck in no-man’s land. No longer an archaic desktop user and not yet hip enough to have a smart phone.
I do, though, have another laptop. I can’t really explain why, other than for situations like this.
“Wait,” I say. “Let me try another computer.” I quickly load the site, pass my three-question quiz, update the two-starred registration fields and voila, I’m accepted. I get a card.
I wish David a winning lottery ticket as well for saving my life.
LIVE-SAVING MEDS TAKE A LIFETIME IN CVS CARLESS’S TIME ZONE
I call back CVS Caremark a bit amazed that I’ve been able to accomplish a $4,000-plus-a-month savings in an hour’s time. Where’s Britany now? I get another David, who has all of Britany’s suave and sensitivity.
“Your address?” he says.
I rattle it off. There’s a long pause. He doesn’t explain. Finally, he starts asking me for numbers on the copay card. The knots in my intestines start to loosen.
David isn’t a fast typer, I learn. When he finally gets all the information he needs, he informs me that it could take up to 72 hours for CVS Caremark’s oncology team to input the information. I’m afraid to ask, isn’t that what he just did? Instead I say,
“You do realize this is life-saving medication?”
“I’ve marked it rush,” he says, in his monotone voice.
“But there’s no guarantee?” I offer.
“Precisely,” he says.
Still, I wish him a winning lottery ticket and thank him for his effort in saving my life. I know it’s dramatic, but he needs some sort of shot in the arm, an “Atta Boy!” at least.
When I hang up, I realize that this is the “mixed bag” my doctor spoke of at my last appointment. I have gone from patient to profit center. Yes, there are many promising drugs, tests, protocols and procedures for those of us with cancer. And all of them come with a huge price tag that everyone wants a piece of, from the drug companies to the health insurance companies, from the specialty pharmacists to the hospitals. If I expect to survive, I need to harden myself and brace for this roughshod treatment.
I look up the cost of a share of CVS Caremark. It’s trading at $102. I think about buying it, knowing that CVS Caremark won’t listen to my concerns as a profit-center, but might as a shareholder looking to reap a profit. Finally, we’ll have something in common.
Hello old friend. It’s been a while since I’ve written and so much has changed. At the beginning of the year, you know, the month of January when you’re fresh and bold and ready to make the changes you need to get things done and feel accomplished, I made my appointment to have my final implants put in. Long story about why I haven’t had it done sooner. A story that gets even longer. Implants are a same-day surgery which require a whole bunch of silly tests and doctor sign-offs. One of those tests was a routine blood test. Nothing to write home about. Until my oncologist called out of the blue looking to schedule an immediate appointment. That appointment led to a few more blood tests, a couple of scans and a phone call in a restaurant from the oncologist to say the cancer is back, riddled up and down my spine and rib cage.
How was it that I didn’t crumble right there and then? Some things I’ll never know the answer to. It had been only two years since I’d undergone the horrors of chemotherapy, radiation and surgery. Two years since my sister took her life, unable to live with the ravages cancer had left her with. And here I was at the precipice again.
January gave way to February and then to March, whose frigid air blew in a new drug regime that include a painful monthly shot in the ass and one in the arm and a new daily pill. Combined, they forbode of hair loss, fatigue and a continual pain in the ass.
Stage IV cancer is a different world from all the other stages. But it’s still a world and one I can live in. It brought with it a new vocabulary – incurable, inoperable, palliative care. Words I didn’t want to hear or believe. Ones I’ve since stricken from my dictionary. And so I revisit this blog with a new message, a new story that looks differently at the past as well as the future – but a future that still is bright and full of hope. And so old friend, walk with me as I tell you my tale.