September Hosts Ovarian Cancer Awareness & International Talk Like A Pirate Day

There is a month, a walk, a ribbon and more to mark many an occasion. I find it a bit much. It brings out my uncommon cynicism as does all the adoration we shower on “children” to make sure every one is born while we live in communities with ever growing poverty rates for these same creatures who we increasingly refuse even to educate.  Just how much do we love them? I prefer action to words and symbols.

But symbols do matter and they can be a powerful call to action – we only need to think of pink ribbons to see a symbol lead to unending zeal. (And still women die of breast cancer at staggering rates that some argue are minimally changed since the pink ribbon campaigns started.)

September is the month of teal ribbons for ovarian cancer. Last Friday was wear teal day. I didn’t, it’s not my thing but I applaud the many who do and use the color, day and month as effective openers to educational conversations. For example, spreading the word to “B-E-A-T” ovarian cancer by sharing the early warning signs of the disease.

B = bloating that is persistent and does not come and go

E = eating less and feeling fuller

A = abdominal or pelvic pain

T = trouble with urination (urgency or frequency)

Women who have these symptoms 12 days in a calendar month should see their doctor. And when they see their doctor they should be prepared to push for adequate testing because such symptoms can be hard to work with. Or, like me, you might have none of them and the cancer has already metastasized to the lungs. Early detection is hard. Prevention is hard. We just don’t have enough tools yet. The funding that might advance cancer knowledge is being cut by our government of and by the 1%.

U.S. President Barack Obama designated September 2013 as National Ovarian Cancer Awareness Month. President Obama lost both his mother and grandmother to this disease and has two young daughters; prevention and early detection should be very much on his mind. Libby’s Hope, an excellent ovarian cancer awareness and survival organization, offers a website full of early detections tips and motivations. Get aware then share. And ask our congress people to stop the Sequester that is slowing down the very cancer research that might unlock more critical mysteries of cancer allowing early detection to be the norm vs the exception.

In the meantime, I read with deep contentment the skillful column by Susan Gubar, shared below, who quarantined her cynicism and unleashed her congratulatory nature as she approached dealing with September as Ovarian Cancer Awareness Month with way more elegance than I. Enjoy….

http://well.blogs.nytimes.com/2013/09/12/living-with-cancer-a-rainbow-coalition/?_r=0

SEPTEMBER 12, 2013, 1:35 PM

Living With Cancer: A Rainbow Coalition

By SUSAN GUBAR

Everyone recognizes the pink ribbon of breast cancer, but fewer know the color of testicular (orchid), uterine (peach), lung (white), pancreatic (purple), or head and neck (burgundy/ivory) cancers. Given current research and treatment, as well as a commitment to equity, is it time to imagine a rainbow coalition?

Breast cancer activists have brilliantly organized to heighten public awareness of a disease that threatens too many women. Support groups, regional conferences, runs, T-shirts, memoirs and photographs raise money for research and help individual women confront a dire diagnosis.

In a post on the Foundation for Women’s Cancer Web site, writer Tranette Ledford worries that she has “the wrong color of cancer.” More than 90,000 American women are diagnosed annually with “below the belt” cancers, but they do not get the attention, information and care they need.

“When we look at cancer through rose colored glasses, we save thousands of lives,” Ms. Ledford wrote. “We might save thousands more if we look through a stained glass window swirling with all the colors representing women’s cancer.”

Even though TV ads tell us about erectile dysfunction and prostate cancer (light blue), are we leery of publicly discussing “lady parts”? I take this to be a serious question about the debilitating silence surrounding gynecological cancers.

I wonder as well about colorectal cancers (dark blue) that afflict men as well as women. Any disease involving excremental matters seems to remain unspeakable for the most part. It is difficult to ascertain the color of anal cancer, but I believe it is purple/green. Also marginalized in representation and debate are men and women dealing with cancers that afflict smaller populations — like multiple myeloma (burgundy), carcinoid cancer (zebra) or thyroid cancer (teal/pink/blue).

American history has taught us that separate is not equal.

In the midst of these competing claims for attention and support, cancer research is undergoing a paradigm shift. We are informed that there are several quite distinct types of, say, breast cancer that must be treated differently. Just as important, a single genetic mutation can cause cancers originating in different body parts.

Today a number of drugs work on multiple cancers. Gleevec has been used on leukemia (orange), but also on gastrointestinal stromal tumors (periwinkle). Avastin is effective for certain colorectal, nonsmall cell lung, brain (gray), ovarian (teal) and kidney cancers (also orange—there are only so many colors to go round). Doctors can now prolong lives by prescribing Abraxane for breast, lung and pancreatic malignancies.

Perhaps the organ of origin is less important than other factors. In this context, the balkanization of cancer identity politics seems absurd. Why should people with melanoma (black) contend against people with liver cancer (emerald green) over limited resources? Instead of haggling over a meager slice of the pie, the breast surgeon and author Dr. Susan Love has argued, we should demand a bigger pie.

Wouldn’t we have more clout banding together not only to support research into prevention, detection and cure but also to counter the exorbitant expense of treatment? The price of some of the newer drugs is sky high. Gleevec can cost $100,000 a year, Avastin $100,000 a year, Abraxane $96,000 a year.

The issue of the colors of cancer was raised by Ms. Ledford to broadcast the fact that September is National Gynecological Cancer Awareness Month (which is sometimes called National Ovarian Cancer Awareness Month). There is cause for celebration among this constituency because a new study in the journal Cancer suggests that the biomarker CA125, when used over time to monitor change, may finally provide a much needed detection tool for ovarian cancer. Currently 75 percent of those with diagnoses deal with late-stage disease and miserable mortality statistics, as I do.

On the first day of National Gynecological Cancer Awareness Month I discovered that the experimental drug extending my life has been so successful that it will be moved from a Phase 1 to a Phase 3 clinical trial. Unlike the Phase 1 trial, which studied the drug in various cancers, the Phase 3 trial will be open only to breast cancer patients. I very much hope it will help the women enlisted, but what about those excluded?

Maybe cancer research and fundraising can’t function without organ-related identifications. Pharmaceutical companies are drawn to large markets. Money is often donated by people honoring a beloved friend or relative felled by a particular form of cancer.

Important as the ribbons are, however, can their use inadvertently set advocates against one another? Without relinquishing the colors, what would it mean to support people dealing with every type of cancer? In the 21st century, children and adults with cancer are unfortunately legion.

We may have something to gain from dreaming a dream that really can come true of banding together under a symbol adopted by a number of social justice movements: the spectrum of a rainbow coalition. I would like to wear that sort of bracelet, though I have never seen one in the hospital gift shop.

This idea comes to me during National Gynecological or Ovarian Cancer Awareness Month. The ovaries are where we all come from.

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Living With Cancer: A Quilt of Poetry

A Quilt for Cara

Susan Gubar is a long time feminist, academic and someone writing loudly about her life with ovarian cancer. She is not the queen of cheer. While accepting the diagnosis of death from the get go, she wrote an entire book about about how hard she found the not dying of the disease in, “Memoir of a Debulked Women”.

Her most recent NYTimes blog post included this poem that she pieced together sharing her love of quilting and words. Each footnote indicates a different writer that she borrowed the line from. She introduces the poem writing, “The chaos of feeling that surrounds disease differs for men and women subjected to quite different cancers. So I used visceral verse by both men and women to convey a chaos of feeling that all of us can share.”

I, too, quilt and love words but after a long week I am too tired to do more than share her most splendid poem of many. (Even the blog title is borrowed from her today.) The quilt photo, though, is taken by me of a quilt I made.

My mouth opens and closes around the word cancer.¹
Try saying fear. Now feel
Your tongue as it cleaves to the roof of your mouth.²
Once again I dress in white
paper and climb onto the table.³
Together we explore my inner landscape on the screen.
He plots a course and charts me frame by frame.⁴
And then there’s the blood tests. How many blood tests?
(Too many to count.)⁵
Negative = Positive, Positive = Negative = Bad.⁶

Even the surgeon who puts you to sleep
knows you will wake up robbed.⁷
What awaits you:
the leg bag, the IVs, the foreskin
looming like a skunk’s tail …⁸
Each wound speaks
its own language.⁹
What is the splendor of one breast
on one woman?¹⁰
They’ve emptied your body of its enemies,
they’re filling you with sterile juices.¹¹

I return across the darkened ward;
the grunts, coughs, and farts
sound as if I’m billeted on
an active volcano.¹²
The windows grow dark
and the grim snort
rasping from the next bed
never lets up, makes the night shudder.¹³
Was it for this, this, become a patient, transformed to a shivering sack of blood to be spilled?¹⁴
And the dark night tracing of malevolent lymph tracks, fear scaling the ice-rungs of my spine?

I need to see my tumor dead
A tumor which forgets to die
But plans to murder me instead.¹⁵
I don’t know how to die yet. Let me live!¹⁶

 http://well.blogs.nytimes.com/2013/07/25/living-with-cancer-a-quilt-of-poetry/?_r=0

1. Joan Halperin, “Injunctions,” in “Her Soul beneath the Bone”
2. Alicia Suskin Ostriker, “The Mastectomy Poems,” in “The Crack in Everything”
3. Sandra Steingraber, “Outpatient,” in “Post-Diagnosis”
4. Pat Borthwick, “Scan,” in “The Poetry Cure”
5. Lucia Perillo, “Needles,” in “The Body Mutinies”
6. Susan Deborah King, “Everywoman’s Lexicon of Dread, with Commentary (Minimal),” in “One-Breasted Woman”
7. Pat Gray, “Cancer in the Breast,” in “Her Soul Beneath the Bone”
8. Gustavo Pérez Firmat, “Post-Op,” in “Scar Tissue”
9. Richard M. Berlin, “Wounds,” in “Secret Wounds”
10. Lucille Clifton, “Consulting the Book of Changes: Radiation,” in “The Terrible Stories”
11. Sandra M. Gilbert, “For My Aunt in Memorial Hospital,” in “Emily’s Bread”
12. Ifor Thomas, “Poleaxed,” in “Body Beautiful”
13. Abba Kovnar, “The Windows Grow Dark,” in “Sloan-Kettering”
14. C. K. Williams, “Cancer,” in “Writers Writing Dying”
15. Harold Pinter, “Cancer Cells,” in “Various Voices”
16. Marilyn Hacker, “Cancer Winter,” in “Winter Numbers”

The Philly Chronicles – a start

My ovarian cancer recurrence in October of 2011 condemned me to the predictable but somber reality of life in treatment. My care team and I selected the Penn trial as the hail mary pass best suited for me surviving longer in this reality. Frankly, there wasn’t an extensive menu of choices. Many other women reached the same conclusion creating a line of hopefuls since winnowed down by the ravages of this disease and hefty qualifications. This week, 19 months after starting the process, I signed the entry paperwork with very little fanfare.

The final countdown to entry allowed me the first moments to switch from ‘must get in’ mode to ‘holy shit, what the fuck am I doing’ mode. It hasn’t made the trial any less compelling, just made my ability to survive the rigors of cross-country medical care a concern. Anyone who knows me knows that I am the ultimate homebody. Additionally, I crave open windows and being outside. Airplanes, airports and hospitals are the worst form of punishment.

Now I consign my high holy months of summer and fall to endless air travel interrupted with endless hours in the hospital. Palliative care patients are counseled to select quality of life since quantity will elude us. The quality/quantity tradeoff is complicated by hope – might I get a bit more time by sacrificing my quality? A more amusing tradeoff is the irony of my lifelong politics prioritizing local solutions (before it was cool) and now I select the least local medical care possible.

I completed my second trek to Philly this week. In the eleventh hour I cancelled months of detailed planning that had me scheduled to stay east between the two May appointments. I got seriously ill at the end of April, which humbled my pretensions of strength – I bought a new roundtrip ticket with bad seats and high prices, as I needed to come home.

My relationship with the travel gods has always been tenuous. It’s like they pull out their most mechanically flawed planes when I show up. They fix them, which is nice, but not before hours are added to the journey. The Houston leg of my late night trek home included several hours circling the city to burn up enough fuel to allow a safe landing and plane change. I crawled into bed at 5:30 am Philly time – a long day by any standards and my standards are not normal.

A month in and I am learning my Philly landscape – who gives reliable answers, what will happen each visit, how to navigate the city and where I sleep.  It’s a pleasant city that I have walked enough to feel oriented. My volunteer host is well situated and generous. More importantly she has windows that open! A tiny terrace!!! I can walk the two miles to my treatments!!! These details mean a lot.

For much of my treatment I have opted to go solo. Getting medical care is my new job and people go to their jobs unaccompanied. Furthermore, I hope to extend this into a marathon versus a sprint and that means rationing how I complicate other people’s lives. But I am now realizing there is a big difference between going solo a few miles from your home with a rolodex of allies willing to be on call as needed. In Philly, I am a true solo act. There is no back up plan. Yet.

Mike can’t stand not going with me but I remind him of the importance of some stability and normality in our lives. He serves as the safe harbor I throw my mind to as I miss my life. I visualize him living for the both of us. He is the person who tends my every need when I am home but we still have enough balance that he stays my lover not just my caregiver. He attends all decision-making appointments but that’s it. I draw lines. They help me cope. But I missed him horribly this last trek.

Luckily, Philly is a fun city just $8 by bolt bus from NYC and other settings. I hope to explore having an east coast care team that can break up the monotony and challenges of this trial so far from home. (Any takers out there?)

The apheresis is next on May 22nd. It’s the dreaded procedure where 10 liters’ of my blood will be removed then returned minus dendritic cells. It’s hard on any body and mine was fragile before I started three years of treatment. My sister-in-law is driving down from upstate NY to share her competence and cheer. I leave for the hospital at 6 am, with all my gear (100% roll-able because I cant carry anything afterwards.) My plane departs at 8 pm that night returning me home at the alleged hour of 4:30 am Philly time. A long day. But then the hardest part is done (hopefully to be re-done only one more time in September.)

The first week of June I return to Philly to start actual treatment – chemo one day, vaccines the next then observation then HOME for 3 weeks! I will learn how to master this trial, the travel and ways to keep this a journey I chose – one that need not just challenge my quality of life as I barter for more time.

I close by sharing the invaluable words of Susan Gubar a colleague in living with incurable ovarian cancer. She blogs about her journey at the NYTimes capturing so many of the complicated emotions and body issues that I face right now as she talks about her life in a clinical trial. I say, ‘ditto.’

much love, marcy

MAY 9, 2013

Living With Cancer: Good News Soup

By SUSAN GUBAR

People with incurable cancer do sometimes receive good news, as I have. Why is it harder for me to share good news than bad news? During treatment, good news produces elating highs, but also anxious lows.

When I entered a clinical trial for a new cancer drug, the consent form stated that the medication would not provide a cure and could kill me. The pills’ effects on my ovarian cancer were to be measured by the CA-125 blood test, in which numbers above 35 indicate disease growth.

I started the trial last August with a CA-125 over 100. As the number fell in the autumn to 38, in the winter to 9, and in the spring to 5, my morale rose – tempered by occasional dips and drops.

My family and friends are ecstatic. So is my oncologist, who wrote in an e-mail: “You do not even know how exciting it is to see the results of this new drug. I do a lot of clinical studies and I see so many negative results, some of which are fatal. We do all that work to get one rare patient who gets benefit … very rewarding to see it happening to my friend!”

The last two words of this message touched me to the quick. After four years, Dr. Matei had entered my heart and (apparently) I hers. A great joy to make a new friend at my age and in my situation, especially a friend so admired.

Yet I worry that I will fail her. A number that descended in the past nine months can ascend in the next nine months. (Overwhelming odds are it eventually will.) Might sharing good news jinx it — turn it, in the blink of an eye, into bad news?

I know from the nurse administrator of the trial that the experimental drug is not benefiting women with breast cancer. My good news makes me distressed about their bad news. Also, I had overheard conversations in the hospital waiting room about other ovarian cancer patients dropping out because of deleterious side effects, some of which I experience.

Weak from months of dosing, I cannot stand on my feet to cook for more than 10 minutes at a time. At the supermarket, I ogle ready-made meals. Changing the sheets on the bed requires time-outs. Filling the bird feeder, hauling it out, bringing it back in at night (so the squirrels can’t raid it) takes too much fortitude. Bones ache that I did not know I had. My hair has thinned so drastically that Joanne at the salon clipped it close to the scalp, all the while lambasting comb-overs.

Diminishing the cancer seems to involve depleting me. Still, I have kept my resolve steady by focusing on the satisfaction of contributing (if only in a minuscule way) to medical research. I had also kept myself on an even keel by hunkering down for the worst.

Now, with the best possible results, I am a neophyte who does not want to be an ingrate. My trepidation at the lowering cancer marker reminds me of the angst recounted by many patients at the end of a round of successful chemotherapy. The gift of time starts to feel like a present spoiled by uncertainty about the future. With cancer, you can’t win for losing.

Yet today I would rather be a cheerful Tigger than a gloomy Eeyore. So to buoy myself I decide to use the chicken stock defrosting in the fridge, its fat congealed on the top, to make matzo ball soup for my visiting daughter and son-in-law.

After I toss most of the fat, saving a tablespoon, I start whipping up the egg whites. But one of the rotary beaters of the electric mixer refuses to stay in its socket; it keeps falling out, no matter how I swivel it. I am here to testify that the gizmo works with only one beater. That, too, feels revitalizing, even though my low numbers and high spirits may have started to change on the day you read these words.

Tonight there will be homemade soup. Tomorrow I’ll put out the bird feeder and leave it out, despite the squirrels.

http://well.blogs.nytimes.com/2013/05/09/living-with-cancer-good-news-soup/