Tag Archives: healing

Cancer is Dance. Here are the steps

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Hope, the Ship We Sail Upon

breast cancer hope Hope. That’s really what this blog is meant to be about. I think sometimes I forget that as I struggle day-to-day with the newness of recurrence and how I am trying to fit it into my life.
Hope is the raft that promises that there’s a shoreline awaiting me after cancer has torn my boat to splinters. It fuels the belief that I will live into my 90s despite the threat of this disease. And that I will be active and healthy until my last day.
Hope drives my optimism that something like a cure lies around the next bend. It may not relieve me of this condition, but it will allow me to live with it.
Hope is what allows me to smile, even when I smell like a refinery from the chemicals injected into my body to defeat those pernicious cells and everything tastes like metal.
Hope allows me to make plans – like running for town council or writing a novel or finishing renovations on our historic home.
Hope reminds me to enjoy the sunshine and focus on the things going right in my life – like making a living as a writer in a small, river town with neighbors who are supportive and friendly, the golden threads woven intricately into the fabric of my life.
Hope has drinks with me at outdoor patios with my family and friends as the sun sets on the river on a Friday night, when I speak giddily about the people I’ve talked to that week, whose story I’m grateful to have been able to tell.
Hope is that quiet voice on the bad days that says “you’ll get through this. You will prevail, no matter what.”
Hope is the belly laugh I have with good friends about days gone by, that at the time seemed dangerous and dark and now, looking back, seem hysterical.
Hope are the neighborhood children who knock on my door wanting to go for a walk with me and my dogs, to make a fire and go for ice cream, reminding me that life is too short not to stop, take time out and enjoy it.
In then end, these forces remain: faith, hope and love. The greatest may be love, but hope is the ship that we sail upon and faith is the wind that fills her sails.

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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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The Unbearable Lightness of Being

Interval healing. That’s what my scans revealed.

I’m still trying to figure out what it is or maybe where it is. Somewhere between not where I want to be and not where I’ve been. Yet heading in the right direction.

It’s still a place of uncertainty, although  I realize, no matter where I go any longer, uncertainty is a certainty.

My doctor and my body are like my childhood Magic 8 Ball these days in their cryptic analysis: Outlook cloudy, try again later.

What did I want my scans to reveal? What would make me happy? Something definitive. Something numeric. An upward number or a downward number. Scans, though, are read by radiologists who write about what they see and then their “impression.” Somehow impression doesn’t sound definitive. It sounds very Magic 8 Ball.

My doctor looks worried (although a nurse reminds me he always looks worried, so you can’t go by that). I ask him what it means. He shuffles papers, pulls out a few snippets from the radiologist’s report, then hands it to me. I realize he hasn’t really read it. That’s why he’s worried. He’s a student caught without having done his homework.

I take the report and start reading my own snippets. “Healing response.” “Interval healing.”

“This sounds good, right?” I say.

He looks at his computer, then at me. “Well, yes,” he says. “But we’re still going to change meds.”  He goes on about biochemical changes as a way of justification. I nod in agreement, even though I know at this moment we’re not quite on the same page about what’s going on inside my body. It’s nothing I can put my finger on. It’s like a piano key slightly out of tune.

When I ask what the radiologist means when he writes the tumor is “filling in” I realize that healing is a new world, with different rules, different terminology that I still don’t quite understand. That I still haven’t distilled meaning from.

The corpses of dead cancer cells build up, making the tumor seem denser or “filled in.”  He calls them blastic. I call them blasted. Either way, they are more dense than the living, breathing, pernicious cancer cells. Death is heavy. Life is light. And the unbearable lightness of being, I discover, is trying to make sense of where the balance lies. This is the weighty process of healing. It’s interval healing.

It’s where I imagine the Syrian refugees live. Out of the reach of an annihilating government and warring terrorists and yet still in search of a final safe haven. Still living in the clutches of uncertainty. Still looking to a Magic 8 Ball for answers in a senseless world that offers none.

Later, a nurse goes over what it will take for me to transfer over to new meds. Life saving meds. Expensive meds.

She’ll need to get an authorization from the insurance company. There may be a fight. There will be lots of paperwork. The doctor will have to justify the change of course. It could take days, maybe a week. We’ll have to wait and see.

I ask her about blastic cells and get a different answer then the one the doctor gave me. I realize I’m going to need a course in microbiology to figure out the answers I’m looking for. Maybe a course in miracles as well.

We seem to be miles apart in our concern about my interval healing and the headaches it’s about to bring.

All we’re able to agree on at the moment is the uncertainty.

 

 

 

 

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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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A Note From The Changed to The About To Change

There’ so much to tell you, so much you won’t be able to listen to. So I’ll start simple. Overwhelmed, right? Don’t worry, that passes. And the things you’re worried about right now? They won’t come to pass. And even if they do, somehow you survive. You make it to become The Changed. And yes, boy is life about to change in ways big and small.

TAKE A DEEP BREATH

Scared, right? It’s OK. Just take a deep breath and a look around you. Start picking out the things you like, the things you’re grateful for. For now, concentrate on that. I have a hunch that when you do, the universe finds a way to send you more of that stuff. And even if I’m wrong, it pulls you through the fear. So just try it.

NOT WHAT YOU’RE THINKING

I know you don’t want to hear this right now, but it’s going to take a lot longer than you think. Sure, you have plans, things to accomplish while in the midst of change. Maybe you will. But there’s a good chance you won’t. When you’re changed, you’ll be OK with that. You’ll find peace in veering off course and the chances and opportunities it brings. With the stories you’ll have to tell because of it. Even the friends you’re likely to make because of it.

THERE’S STILL A LONG WAY TO GO

Will you miss the things you are holding on so tightly to right now? A little. At times, you’ll feel a pang of pain over all you’ve lost. But it’s just a reminder of where you’ve come from and how you’ve learned to let go, not hold so tightly. And that makes you smile, like a rainbow through the raindrops.

It doesn’t matter how you get here: kicking, screaming, ranting, raving or sullen and insolent. You will get here. You will be changed. Forever. And after a spell, you’ll find some gratitude. And then you’ll know you’ve healed.

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