Tag Archives: breast cancer

Uncertainty Casts Grotesque Shadows

uncertainty-casts-grotesque-shadowsCancer has declared a stand-off. Not moving forward, not moving backward.
In some ways, this is the worst possible news. Had my numbers gone up, I’d be making appointments for scans, plotting my next move to enter a clinical trial.
Had my numbers gone down, I’d relax and coast. Get back to writing my novel and creating a new normal, instead of haunting medical research sites and online drug dictionaries.
Instead, my numbers stayed the same, holding me hostage in uncertainty. Rubbing my nose in my vulnerability.

When you’re feeling vulnerable, there are two roads you can take: Victimized Avenue or Pioneer Boulevard. Early on, I chose the Boulevard. But I have to admit, sometimes the Avenue appears like a shortcut, and I can’t help turning down it.

Yesterday I presented my clinical trials chart to my oncologist. He seemed impressed with the work I’d put into it. His practice is in the process of aligning with MD Anderson and will soon be offering that cancer research institution’s clinical trials. Four of my top five choices are MD Anderson trials.

My chart is in an Excel spreadsheet which can be hard to read on paper. So while I handed a copy to him, I also told him I’d email him a version. It would be easier to read and more importantly, easier to locate for a phone call he said he had with MD Anderson folks the next day. I grabbed a business card from his desk while he nodded earnestly.

When I got home, I went to email him the info, but his card didn’t have his email address. So I called his office. The receptionist told me she’s not allowed to give doctors’ email addresses out.  Her name is Anita. I’ve renamed her We Need A – as in we need a lot more like her. She mentioned that I could go online and find it.  I thanked her for the suggestion.

His email address isn’t online, but it wouldn’t take a third grader more than a blink to decode it based on the email addresses I could find. Within a few moments, I’d emailed him the chart.

But then I started to wander down the Avenue. Why hadn’t he told me about the email Cone of Silence? Why hadn’t he just been honest and either given it to me or offered me another solution? Was he just blowing smoke about the whole thing? Did he even have a phone call about clinical trials set up?!? Or the moment I left, did he just throw my chart in the trash and move on to the next patient? Most of all, mired in my vulnerability, I began to wonder, can I trust my quarterback to have my back?

Uncertainty casts grotesque shadows and the Avenue looks like a straight, well-paved road, before it veers off into ruts and potholes.  This part of the journey seems unbearable. My mind monkeys have taken the steering wheel while I dive in the back seat to subdue my nausea that’s intensified by the taste and stench of chemicals exuding from me, the result of drugs I’ve just been infused with. Drugs that may or may not be working and demand a lot from me in the meantime. Mind monkeys are poor drivers. It’s a wonder I ever give them the wheel. In my weakness, though, the offer of letting someone else drive is too tempting. I can’t resist. I hold my stomach as they careen over every bump and hole along the Avenue – and this far in, there are plenty. I pray we get back on the Boulevard soon, even though, at the moment, I’m not feeling much the pioneer.

This morning, I got an email reply from my doctor. A short thank you sent from his cell phone letting me know he’d received my info. It’s enough to make me park the car and wait until I’m feeling better to take back the steering wheel as we both head out onto the Boulevard.

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Compiling My Clinical Trial Playbook

I’m standing under the street light on the corner of Win and Win. I’m sure it casts a shadow behind me, but today I choose to look into the swath of light that shines ahead of me.
I got a call back from Serena who heads one of the clinical trials I’m interested in. Serena was easy-going and fun. It turns she’d transposed numbers from my first call – or I’d gone too fast – which is why she hadn’t responded quickly. She called right back after my second message.
Yes, the trial is open. Yes, I’ll qualify if the drugs I’m on aren’t working.  Yes, because it’s a clinical trial, it’s completely paid for. Yes, it’s as I understood it. They’ll biopsy my tumor, send it to a lab at MD Anderson in Texas to test if for more than 400 mutations (think: doors and windows the cancer cell has on it for the drugs to get into). If the tumor tests positive for any of them, then they have 24 different drugs to throw at it (I wouldn’t be on all 24, just the ones that will “unlock” the door or window they find for my T-cells to get in there and do their job to kill the cancer).
My next step, said Serena, is a CT scan to see what effect the drugs I’m on have had on the tumor. More importantly, it gives the trial folks a starting place where they can measure it and compare it so they know if their drugs are working.
She follows up by emailing me something called an Informed Consent, which I learned at the conference every trial must offer after you speak with them. It tells you in plain English what the trial is about, what’s expected of me, what’s expected of them. It tells me things like they’ll pay for the treatment and in exchange, everything I undergo as part of it, I have to do through their medical team, that I have to let them know right away about side effects so they can respond, that I can jump out of it at any time and that I can always go back to standard treatment (think FDA approved drugs) if I choose and that even though we’ve had this phone call and I have this form, it doesn’t mean we’re moving forward just yet. The consent form is several pages long, but easy to read and understand and I feel much better about the whole thing having it. Somehow it makes me feel like I’m moving forward.
In the meantime, I am putting together a chart in Excel listing all 20 of the trials I am eligible for (I’ve found a half dozen more since the conference). I’m ranking them in the order of most appealing to least. It’s time consuming because the description of each trial is mind-boggling. I have to look up each drug they’re testing to see what it does, what it targets (is it my immune system or the cancer cell? What will it do to it? What side effects might I have because of it?)
Gratefully the National Cancer Institute has an online dictionary that I can plug each drug name or number into. It takes a bit of fiddling, but I don’t give up until I understand it. Then I write a sentence synopsis in my chart about the drug and what it will do. In another column I list where the trial is being held, in another column who is sponsoring it (is it a drug company? A research company? A hospital?). I don’t know if this is important, but it might be a factor worth weighing in on later, so I add it. I have a column for next steps (like the scan or another biopsy or a blood draw or a mouth swab). It’s amazing the different ways they can retrieve cancer cells from the body. I have a column for the type of study – whether it’s a Phase 1, 2 or 3 or just a research trial. Phase 1 trials are searching for tolerable doses of the drug. Phase 2 looks to see how effective the drug is. Phase 3 hones it down even further. Many drugs today are so effective that they’re receiving FDA approval during Phase 2.  Still, as a patient, it’s important to know what I’m signing on for. Phase 1 studies are bigger and will take in more patients, but as they’re looking for tolerable dosages, there’s a good likelihood there will be side effects. That’s usually the trigger point when researchers say “OK, enough. We’ve found the right dosage.” This is a conversation we’ll elaborate on once I’ve been accepted into the study, so I’m only concerned about it now as a way to narrow my choice on the best trial for me.

I’m looking at this chart as my new playbook. Here’s where we’re going if the drugs I’m on aren’t working or once they stop working (and they’re virtually guaranteed at some point to stop working). This feels empowering to me, like I’ve thrown in the Hail Mary pass for a running game.

I’ll see my doctor again in two weeks, where I’ll hand him our new playbook. The way I see it now, he’ll either tell me my numbers are dropping which means the drugs I’m on are starting to work and I can coast for a while, get back to my life. Get back to managing cancer rather than it managing me. That’s a win.

Or he’ll tell my my numbers are still rising, which means the cancer cells are changing quickly to adapt so the drug doesn’t kill them. Fast-changing cells are perfect targets for clinical trials and the drugs they’re testing. So it will be another win.

Which is how I’ve come to be standing under the street light on the corner of Win and Win, changing my outlook so I’m no longer focusing on the shadows being cast behind me, but the brightness that’s in front of me. For now, it’s a great place to be.

 

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Fourth and goal and in need of a win

cancer goalsIt’s early September, the beginning of the final quarter of the year, and I’m looking at where I am in accomplishing my goals.

This year’s goals were pretty much the same as last year’s: Finish my novel. Finish renovations on our 1860s home.  Complete a few side projects like faux graining a cabinet or putting a quilt applique on some threadbare bedding. I admit, I know nothing about the last two, which means there’s a learning curve involved that’s slowing me down. Truth is, there’s a learning curve to all of this.

My inbox is filled with advice, templates to download, steps to take to move me forward. Everyday I take time to read those emails or fill out the forms, put a plan together. For a week or two I even put the time into acquiring the habits I need – whether it’s blogging or spending a half hour writing 500 words in my novel or making dinner at home every night for a week with fresh vegetables from my garden. Then I’m all high-fiving myself over finally getting through the mire and moving on with my life.

Until…I get to my monthly oncologist’s appointment. And then, my life gets derailed. January was “Let’s look under the hood.” February was scans, March results, April why don’t we try something new, May was getting health insurance approval, June dawned a day of promise as my number shot down, pain shot up with the new drug. July was managing side effects and trying a lower dosage, August was the reality that July’s strategy didn’t work so we’re back up to a higher dosage and looking for new alternatives, like clinical trials.  And here I am in September wondering where the year went and why I haven’t accomplished anything.

To be fair, I have accomplished some things. I did run a half-marathon with neighbors who became better friends in April. I did a triathlon in June and several 5K runs with a new group of friends.

Another good friend reminds me that I’ve continued to work on my novel, interviewed several famous people for stories I got paid to write, kept up with friends, have launched a campaign to run for borough council, researched cancer treatments and signed up for a conference to educate myself about clinical trials. I’ve mentored kids who live on my street. Volunteered to help judge a baking contest so I could write about it in my novel. I’m taking an online college course on doping, as the issue is a prominent theme in my book.

Still, I have a pile of magazines beside my bed that I can’t seem to get to read. And while I’ve had a lot of great lunches with friends who have helped me craft a plan or make a connection to move me closer to my goals, I still don’t feel like I’m making any progress.

So as I sit down to figure out how I’m going to accomplish in the remaining three months of the year what I couldn’t seem to do in the past nine months, I also ask myself how do I live alongside this disease and stop it from running my life as I’ve let it? How do I send it to the corner for a timeout so peace can reign in my classroom for the remainder of this period? And when will I be done with this lesson so I can move on?

 

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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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Another Call of Duty

cancer call of duty

I’ve spent the day writing apology emails to the people I blew off this week after being called up for active duty as a Breast Cancer Conscript. While I expect to battle this disease for a very long time, learning to manage it is another matter entirely.

The battle requires aggressive medicine that’s guarranteed to stop working at some point, which means moving to another aggressive medicine with its numerous side effects that seem to play out differently in my body than those who have gone before me.

As a Breast Cancer Conscript, I patrol cancer’s parameter under mostly peaceful circumstances until I come under fire. The higher ups (that would be my doctors) move in new artillery (that would be the new drugs), allowing better targeting of the enemy. But getting used to using it is a bit like a sniper who ends up battered and bruised from the recoil of the high-powered rifles he’s using until he gets used to the way it fires.

That’s been me this week, as I juggle my non-cancer life (and believe me, I do have one) with my cancer tour of duty.

In my non-cancer life, I am a freelance writer, which suits me well, both because I enjoy the vocation and because I can adjust my schedule when I need the downtime to acclimate to new meds and their side effects or for a day’s worth of scan’s or tests to see if they’re working. My current goal is to shift from selling the stories I write to becoming a published author, so that instead of getting paid one time for my work, I can generate residual income. That’s not a lesson of cancer, but of the financially successful. It’s just that cancer makes it all that much more necessary.

I’m no longer a new recruit to this war, but I am new to the warfare tactics. So when I started having side effects from the Ibrance – namely bone pain – I shrugged it off and decided to just grin and bare it. When it got intense, I went out and exercised, which kicked up enough endorphins to make the pain unbearable.

With normal pain from aging or overuse, your mind wraps around it and can tune it out, so the intensity fades and you can get on with your day. Or you know or have learned how to manage it with an ice pack, laying off of it for a while or downing a pain reliever like an aspirin or Ibuprofen.

With cancer medication side effects, it’s a whole new world. Sometimes the pain will disappear after a few minutes. Then, it will crop up in another body part, from say the leg to the arm or shoulder, a sort of Whack-A-Mole of pain surges. Sometimes it will be a dull ache, other times an intense burning. Sometimes something as simple as an allergy relief tablet such as Claritin will take it away. Other times, even doses of a high-strength painkiller like Oxycodone don’t work.

And there’s no rhyme or reason to it. I can go a day or two with no pain, then suddenly a flare up, which can bring on nausea and irritability. I’m amazed at how pain affects my moods.

My doctor has been sympathetic and liberal when it comes to offering drugs to counter the pain. The problem is, those drugs are addicting. In my age group the leading cause of death isn’t cancer, but overdose from opiods or suicide because of dependency. A few in my circle have suggested medical marijuana, which can alleviate pain, nausea, act as a mood booster – and most promising – is a possible cancer killer. Of course, our puritanical medical and political establishments frown on this. I have yet to have the conversation with my doctor. For now, he’s agreed to lower the dosage of the Ibrance. We both agree it’s too effective – bringing down my tumor marker numbers quickly, but obviously doing damage to the healthier parts of my body.

Yes, there are many promising drugs out there that give me hope for a long, healthy life. But I’m learning they all come with a price tag, each one heftier than the last. And while I win the battles, it’s still a long, draining war.

 

 

 

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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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An Unfaithful Body and A Change of Scenery

My body is cheating on me again, or so my doctor suspects.

Harmless flirtation, she says. Just being friendly, she tells me. And I sooooo want to believe her.

My doctor, though, is like a girlfriend who shoves a cheating husband’s phone in my face with an unknown number and says “Call it. What can it hurt? At least you’ll know.”

So he orders tests and scans in hopes of explaining why my numbers aren’t doing what they’re suppose to do. Calling my body on her stuff.

Can she really be this duplicitous this soon? I’ve only been on these meds a year and they were working so well. And I’ve lavished so much attention on her – running, swimming, biking, eating well. Basking in the sunlight outdoors. Avoiding stress. Certainly she must be enamored with me. Certainly she can refrain from the addiction, the habit of consorting with cancer cells that spell both of our doom.

I know she can’t help herself, that even if this time I find my faith in her is warranted, there will be another time, another place where she’ll cheat.  Those wanton cancer cells are too tempting.

My doctor gives me the same advice my friend would – a change of scenery will do you both good, whether she’s cheating or not. Time to chart a new course, no matter whose number it is, no matter what these numbers mean.

We talk about switching out one pill for another. Maybe this new one will neuter my body’s desirous, philandering ways. Maybe this one will keep her faithful, at least for a while longer.

And so I endure the humiliation of the accusation, the suspicion and what it takes to uncover the truth, whatever it is, dangerous or not. The poking, the prodding, the fasting, the gagging on chalky substances so I can be scanned by coffin-like machines that can see into my inner-most spaces, beyond even my nakedness and scars. So that my body’s true intention is revealed and then everyone will know.

Maybe it’s like a misdialed call, the numbers a fluke, I tell myself. Maybe she even intends to surprise me, prove to me her love and the tests will show that my body’s banished those troublesome cells forever. My doctor, like my girlfriend, smiles smuggly over a raised eyebrow that says I’m being delusional when I suggest this.

The truth is, we are bound forever by unfaithfulness. Me and a body who can’t refrain from cheating on me with cancer cells that may one day be our demise. And my delusion that it could be otherwise….if only.  If only what?

 

 

 

 

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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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