Tag Archives: breast cancer recurrence

Cancer is Dance. Here are the steps

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You Can’t Go Home Again

The Me I New

           THE ME I ONCE WAS

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.

THE ME I THOUGHT I COULD BECOME

         THE ME I THOUGHT                        I COULD BECOME

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.

 

 

 

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Ibrance Romance

clinking glass

AS GOOD AS IT FEELS, LIFE’S ABOUT TO CHANGE AGAIN

An oversized brown box arrives on the front porch. Inside is a plastic bag. Inside that, is a small bottle, maybe three inches big. Inside that are 21 Ibrance capsules which will take me through the next month of this leg of my cancer treatment.

The bottle of pills cost $10,000 a month, so I imagine it doesn’t seem indulgent to the specialty pharmacy to send it out overnight in this oversized package. The plastic, resealable bag is thick. I can think of a million reusable ideas for it if it didn’t contain the ominous skull and cross bones and a warning that reads: Dangerous. Toxic. Chemotherapy drugs. Do not handle.

I wonder what my trash men will think of me. And I realize I now live in a toxic world, one where I can no longer recycle or repurpose. One where there’s no turning back.

According to my first pathology report five years ago, my cancer cell was an estrogen-hungry fool, making her easy to decimate. I agreed to an aggressive IV chemotherapy treatment that shrunk my tumors to mere slivers, and the surgery and radiation that followed erradicated them entirely. I endured baldness, bone pain, nausea and weakness that I thought I’d never recover from.  For my efforts, my doctors were sure I was cured, free of the pernicious cells.

AND THEN THERE WAS THE ONE THAT GOT AWAY

But it turned out, one survived. My onocologist would later explain that tumors are like jars of pebbles and the first pathology report told of a larger rock in the jar. What was left was a grain-like piece of sand. This cell didn’t eat much estrogen. She was very slow growing. I called her my Crack Whore cell, because it was amazing she existed, let alone thrived in the Country club setting that’s my body. My Muffy and Buffy cells were outraged that she’d gained admittance. They want her banished.

I agreed, of course. And so we sought to oust her with a combination of drugs. One, called Xgeva, fortified my bones, which is where she took residence, relegating her to a cardboard bed existence outside a barred –bone entrance. The other, called Faslodex, filed the edges off the estrogen the Crack Whore feeds off of so she couldn’t grasp them when they floated by her. The third, called Arimidex, leeched the estrogen out of my body, in an effort to starve the Crack Whore completely.

SO WE ROCKED HER WORLD

In the beginning, the new hostile environment worked. The Crack Whore stopped having babies and Muffy and Buffy filled in with their own children.

Then after about six months, the Crack Whore realized she didn’t need as much food, didn’t mind the cardboard bed and started pimping herself out again. Judging by the CT scans I had last month, she hasn’t given birth, but she’s likely pregnant along with her other Crack Whore offspring.

So last month, I started  a new approach. Nix the estrogen leeching drug and replace it with the Ibrance, a drug that blocks proteins the cancer cell needs to replicate. A Crack Whore cell tubal ligation of sorts.

THE MARRIAGE DILEMMA

I call it the Ibrance Romance. When I started taking the drug, it seemed so much better than anything else I’d been on. I was in love. Three weeks into it I crossed the matrimonial threshold and suddenly thought  to myself “What have I gotten myself into?”  Now I wonder if I can endure living with it the rest of my life or if I’ll scratch its eyes out.

While my doctor told me I shouldn’t experience any side effects from the Ibrance, he explained that the drug suppresses my bone marrow – that’s the place where red and white blood cells are made – so I will likely see my blood counts go down. I need to go in for tests to be sure they don’t go too low, in which case I’ll need to take a break from the drug or go off it completely. For that reason, I can only be on the drug for three weeks at a time, with a week off to give my body time to replenish the damaged bone marrow.

It’s a bit like going into Muffy and Buffy’s den and messing with their Netflix streaming. But knowing that Muffy and Buffy are the Country Club set, I kept them preoccupied with activities. I make lots of dates with friends – many who are in the same boat – to run, bike, swim, walk. Keep our endorphins up, the dopamine pumping, the serotonin flowing. For Muffy and Buffy, it’s a cocktail party and they didn’t miss NetFlix.

PARTY’S OVER

Then came the hangover. Searing pain in my bones that were rebuilding themselves, from a restless aching in my toes up through my long, leg bones to a burning in my rib cage and pounding in my head like I’d been hit with a baseball bat. I took a pain reliever, which didn’t much help.

I decided to respond to pain with pain, longer runs that inflame my hip flexors, cancelling out the bone pain, which works until I have to go to sleep.  And then, even that stops working.

The pain is so great, I call my doctor for an answer, something stronger to relieve the pain. And while I wait for him to return my call, I begin to cry. I cry because it hurts. I cry because I know I now live in a toxic world where I can’t recycle or repurpose and there’s no going back. I cry because my body has to work so hard to heal itself and there’s nothing I can do to change that. I cry because I know this is the tip of the iceberg, that I’m in the rabbit hole and down is the only way I can go.

I cry until I hear a knock at the door. I wipe my eyes, as I hear giggling and clinking glasses on the other side. It’s Muffy and Buffy.

“Cocktails anyone?” I hear them yell on the other side.

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From Patient to Profit Center

winning lottery ticketTurns 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

 HELL TO PAY

“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.

THE $4,380 QUIZ

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.

DEATH PROFITS

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.

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Resiliency Training- What It’s Really Going to Take to Bounce back

A friend handed me a newspaper article offering eight tips on ways to develop resiliency. When I read them it hit a nerve. The tips were a bit trivial and didn’t go far enough, as far as I am concerned. After mulling it over for a few days, I went back and revised the list (which I’ve left in italics). Here (in boldface) is my take on what it takes to be resilient:
1. Build and maintain strong relationships….The truth is, your relationships are about to go through a hurricane. Those who have stood by you to this point may fall away. It may be because they haven’t addressed their own issues. It may be because they just haven’t experienced what you’re going through. Some you’ll need to detour from. Some you’ll need to drop entirely. To deal, you’re going to want to pull away and “tough it out.” But the lesson is, people are not always loving or loyal. Forgive them, which doesn’t mean they’re not assholes, just that you’re not going to dwell on it. Instead, put your time and energy into relationships that are working.
2. Do something every day that is meaningful….Sometimes life doesn’t give you the option to do this. Sometimes it requires long stays in hotel rooms or hospital rooms or inside court rooms. An easier task is if you need joy, do something for someone else. Make a child smile, hold the door for someone, pay for the person behind you in line in the coffee shop or at the toll booth. It will bring you out of whatever funk you’re in and make you realize the world is a bigger place with bigger problems than what you’re going through.
3. Learn from experience that feelings are fleeting and you’re not always going to feel this way. At times it was hard for me to look past the anger, sadness, betrayal, grief even depression I was experiencing. But somewhere deep inside was a voice that said “This too shall pass and the only way out is through.”
4. See change as an adventure….This can be really hard when change is pummeling you day in and day out and hope seems to have abandoned you. As difficult as it seems, make friends with your fear, regret, anger, grief. As Buddhist Thich Nhat Hanh says, invite it into your living room. Ask it to put up its feet, offer it a cup of tea. These difficult emotions are going to be with you for a while, so you might as well befriend them. As Pema Chodron says” How do you get comfortable with uncertainty? Get comfortable being uncomfortable.”
5. Take care of yourself with a healthy diet and exercise….Better advice: Be gentle with yourself and trust the bounce. A year after my sister’s death we experienced a brutal winter, encased in ice that made it impossible to get out and exercise. So instead I stayed home and made lots of chocolate chip cookies. Many of them I gave away to the police and public works guys who were putting in long hours removing the snow; to neighbors who had shown me kindnesses; to an attorney who represented me pro bono while my father’s angry ex-wife chased me through the legal system, filing frivolous motion after frivolous motion just to antagonize me. But I also ate a lot of them and in the process gained 10 pounds. Until that point, every year I had made a New Year’s resolution to lose 5 or 10 pounds. But it wasn’t until I was 20 pounds overweight that I was actually motivated to lose the weight. I joined Weight Watchers in March with the goal of not only losing, but keeping it off. A year later, not only have I kept it off, but I continue to lose – albeit slowly. My point is, I ate those cookies with wild abandoned, which is what I needed to get me through that desperate winter. And when I was ready – when I hit my bottom – I bounced back. I’d learned that I could trust that.
6. Be proactive. Decide what you want and formulate a plan to get it….Truth is, life doesn’t go as you plan and often it has its own agenda. I have reams and reams of goal lists, action steps, crossed-off to do lists and I am no closer to my goals than I was five years ago, not because I’m not taking steps, but life has had other plans for me. This step is great for those still living under the illusion that they’re in control of their lives, masters of their destiny. Resilience is accepting that life is 10% of what happens to you and 90% how you react to it. The rest, you just gotta let go of.
7. Keep a gratitude log and when you’re stuck go back and look through it…I am a huge proponent of gratitude lists. I have several gratitude notebooks, a journal I write in daily that I always end with five or six things I’m grateful for. I also have a “mindfulness” eating habit where just before a meal I thank all of the people who have brought it to me (farmers, truckers, the grocery store clerks, etc.) wishing them happiness and health. When I look back on these journals though, I find that most of the things I’ve been grateful for are gone. My father, my sister, my good health, a sunny day has given way to rain, etc. Therefore, I’d say gratitude will help get you through moments of intense pain or difficulty so it’s a good habit to cultivate. But it will also show you how fleeting life is, and therefore how important it is to recognize, in this moment, what’s going well because there’s a good chance it won’t be there in the next. The rest, though, you just have to let go.
8. If you don’t feel these tips are working see a mental health professional….My advice: No matter how bad things are, don’t lose your sense of humor. Even in tragedy there is absurdity. If you find you can’t laugh, definitely go see a mental health expert. Also, don’t be afraid to go on medication if you need it. You’d take cough medicine for bronchitis, antibiotics for an infection, the same for anti-depressants. There are some mild ones out there that help put a brick under your foundation when you can’t feel the ground under your feet. You don’t have to stay on them forever, but healing can only take place when you’re grounded.

Believe me, one of the greatest lessons in resiliency is knowing that you’re completely vulnerable and you’ll still find a way to make it through.

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It’s an evolution not a revolution

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.

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