Tuesday, October 1, 2013

October 2013

It's October 1, 2013. Our government? Lights out.  Our culture? Splashes of pink pop up like crabgrass, from the grocery store aisles to newspaper supplements.

But the truth is out. Those most affected by metastatic breast cancer are not fooled by the government's stonewalling nor are they taken in by a commercialized illusion of cancer. They are busy with other things. Things like living.  Things like dealing with neuropathy or nausea from yesterday afternoon's treatment. Things like tracking down a researcher while juggling a child's after-school schedule, or sharing news about Perjeta, the first neoadjuvant treatment for women whose breast cancer tumors express the surface protein HER2-neu (human epidermal growth factor 2), which account for perhaps 20 percent of the 160,000 new cases of breast cancer expected this year. Things like researching second generation sequencing and asking about the differences between genomic profiling and chemo-sensitivity testing. These are just some of the things people with metastatic disease do. Some are preparing for palliative radiation therapy, a new round of chemo, others are returning home with drains and pain medicine, another has just entered hospice care. Every year approximately 40,000 die of metastatic, not primary, breast cancer. That comes to 1,000 women every day.

Everyone is changed. Our shared humanity ties us together in a sacred space.

Two weeks ago I attended the Metatstatic Breast Cancer Network's annual conference that was held in conjunction with the MD Anderson Cancer Center in Houston. There Don S. Dizon, MD of Massachusetts General Hospital and frequent ASCO Connection contributor, presented a perspective  on living with metastatic breast cancer that didn't as much resonate as detonate. That's because the words typically associated with metastatic disease aren't of the back-slapping hey, make my day variety.  In oncology corridors the frequent phrases are incurable, progressive, chronic and relapsing to the frequently repeated "many live well a long time."  

With Don S. Dizon at MBCN's Annual
Conference in Houston 9/21/2013.

In the first weeks following my metastatic diagnosis I frequently deconstructed "many," "live well" and "long time." How was many was many? Greater than 70 percent of women live a long time? 60 percent? I gnawed on my own chances.  I had little blobs of cancer in a lot of places, a tad more difficult than one big blob that could be nixed out with a scalpel or a jolt of radation. Listen, someone else's cancer is always cooler than yours.  What about a long time? Was that ten years? How about 11? Twelve sounded magnificent but 13!  Greedy and perhaps unwise. At that point in my own experience acceptance and uncertainty had not yet laid down the essential, parallel tracks through my consciousness, like the smudge of a jet stream against a fall sky.

In fact statistics on metatstatic disease, which uses information gathered from the past to project how you may do in the future, now feel absurd to me. They feel inaccurate and out-dated. Social media amplifies the difficult at the expense of underplaying the rhythms of regular life. Many out here in mets country are visually unidentifiable. We don't look sick. Tumor biology and the array of available treatments now, plus the unknown interplay between each woman's individual health, her tumor and reaction to treatment are the final arbiters of health, of lived days. All these intangibles. There are no answers, only guidlelines and decisions formed by each woman's preferences, her perception of the facts, and an oncologist's wisdom and experience in helping to guide the patient and significant other (s) through the process.

"Breast cancer sucks. Metastatic breast cancer sucks even worse," Dizon said. He wasn't swearing for an easy conference chuckle (zesty cancer crowds swear a lot)  but because it led him to what was even more important, "Feel it. Own it. Embrace it. Then move on."

Dizon uses a three-prong approach to make some order out of a disease with so many uncertainties. When oncologists say, "everyone's different," that is the truth.  Give 100 different women Femara and the range  of reported side effects will stagger you.  To keep things simple Dizon recommended three words: pragmaticism, realism and optimism.

A pragmatic approach to metastatic disease, which has stages I'm only now understanding that are not linear but cyclical, simply means being practical. "No one else has to walk in your shoes," he said. "Do what matters.  With metastatic disease it's all about you and those you love."

It's about you and those you love.  It occured to me not to let cancer screw that up, that nothing was that powerful.  "Prepare for an uncertain present, and an even more uncertain future," he said.

For me, that is where both optimism and a realistic approach play. This week I have another set of staging scans. That's the reality. Numbers and digital images may or may change my current prescription. But what Don Dizon brought home was his emphasis that being realistic does not mean ceding your independence or sense of less.  Cancer won't make me less than.
MBCN Conference Shirt Says it all.

I listened, then walked around for a few moments after his address. When you step into a ballroom full of women amd men who have lived with this illness for many years -- its peaks and valleys, months of clear scans, a body's sudden betrayal, an errant tumor marker, a treatment failure -- your perspective once again expands. It can only be so. Your eyes fill with tears.  I know who these women are now. I see them.  Yes, finally, I get it. I know each and every one would divorce themselves from this disease in a heartbeat if it were at all possible  So far it isn't. But I can feel it, own that, and embrace my life.

I wish the same for you.


Some pertinent links for October:

1) The Advanced Breast Cancer Community, Who Are We? 
2) The power of grass roots advocacy & growth:  Metavivor, supporting metastatic breast cancer research 
3) Amazing work: Think Before You Pink
4) Takes no offense from the word no: Terry Arnold, survivor and advocate for Inflammatory Breast Cancer (IBC).  IBC is a rare (approximately 4 percent of all cases) and aggressive form of breast cancer that often appears as a rash and may not appear with a lump. It is frequently misdiagnosed. This is one case where early detection can make a profound difference.

To come:
1) ABC2 - Advanced Breast Cancer Second International Consensus - Novemeber 7 - 9, 2013
2) San Antonio Breast Cancer Symposium -  December 10 - 14, 2013

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Anonymous said...

"our shared humanity ties us together in a sacred space." So true, my friend. Thinking of you while you get your scans and hoping for good news.

The Accidental Amazon said...

'Cancer won't make me less than.' No, it won't. Not you, Jody, not ever. Hope that pragmatism & optimism sees you through the numbers & scans. xoxo, Kathi

Nancy's Point said...

Thank you for sharing about your recent experience attending this conference. I can only imagine the emotion in the room(s).

Cancer stomps us down more than a bit, but as you said it cannot make any of us less... pretty profound when you stop to absorb that.

Love and support coming your way always, my friend.

Unknown said...

Jody - Meeting you and other BCSM friends was the highlight of my trip to Houston to the MBCN conference. Listening to Dr. Dizon was a close second. Thank you for all you do! As we all struggle to "feel it, own it, embrace it and move on" it sure helps to know we have a lot of people with us for support and love!

Facing Cancer Together said...

I needed to read this post, Jody. Feel it, own it, embrace it, then move on. I am working toward that last one :) ~Catherine

Jody said...

All, thank you so much for your comments and love. Amazon, I am nothing if not pragmatic (tho occasionally erratic!). I'm feeling better physically and emotionally hope that that sense of returning wellness is not betrayed.

Barb, Catherine:
I think about you both all the time
We are floating along in the same boat. Mutual support makes it doable.

PinkUnderbelly & Nancy,
Your constant support is part of my hope factor. It keeps me positive and that truly does help right now.

In fact, I'm writing you from MD Anderson. Scanning is nothing but big stretches of time. You check in. Wait. Drink stuff. Wait. Have IV line installed. Watch it bleed. Drink more stuff. Then wait:)

So it's lovely to check in from the house computer and find your sweet comments. I hope your day is awesome!!

-- Jody

Debbie said...

Beautifully written without distractions from the heart of the matter; To live your life in an uncertain world. Something we all have to do to some level or other and to various levels of awareness. Thank you for sharing this with us. It makes our community so much stronger.
Love, Deb

Susan Zager said...

Thank you for sharing this great information about the conference. I hope your tests have optimistic results. Sending you loving and positive thoughts.

katie ford hall said...

Rock on, Jody!!

Unknown said...

"It's about you and those you love." So important, thank you for your gentle wisdom Jody. xo Carolyn

carmen2u said...

Well said, dear Jody. For every person, like you, living at the very fringes of uncertainty, that takes more courage because you're tackling two battles at once: advocating for others and combating your own stalker (cancer). It also means that the rest of us have to step up our game to support the larger cause. It is our "shared humanity" that demands it.


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