Tag Archives: ovarian cancer

Dreaming in Ten Day Allocations

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A Brief Update from Marcy

Phew…..my 2015 roller coaster ride continues. In early April intensifying pain turned into non-stop vomiting indicating a bowel obstruction. I was admitted to OHSU, a teaching hospital where courageous bedside manner was being tested as I was informed on the severity of my status. One option presented, being “sent home to starve”, sent my support circle and I into an advanced stage of grief. The hospital advised waiting to see if my body could self-heal through fasting and no liquids to aid bowel recovery.  (Please Note: I have since come to understand that being “sent home to starve” is harsh language for a common way to die. As the organs begin to shut down due to cancer, the body no longer wants or needs food and then water leading, in fact, to what can be a very peaceful death.)

You Need Your Bowel - outer pink.

You Need Your Bowel – outer pink.

As my blog reported on April 7th (With Love and Luck) I did recover from this bowel obstruction but I remain at higher risk for more. As has been true for all of 2015, I continue a downward slide. It hurts to walk, so I don’t walk. I feel my cancer despite my opiate patch.

When first diagnosed I was informed that I needed to learn to live in three month increments. I did. I feel like my new mandate is to live with ten-day increments (the time it would take for a bowel obstruction not to self-resolve) and this feels hard. I need to think about every thing that I put in my mouth. Is it low fiber? My farmer husband is aghast that all that he grows and prepares for me as organic and full grain is now condemned.

White bread only!

White bread only!

I continue to find some amusement in the ironies of life.

Palliative care is now an active team member. They are great. They also advise me against hospice since in hospice I can have no chemo treatment and I would die fast. I am still opting for life.

I had a few days in the hospital where I had NO PAIN. I felt stable for the first time in 2015. I work towards that stability and then rebuilding all the strength I have lost.

This optimism is eased by my latest ca 125 showing a startling drop from 173 to 117. For days I refused to open any other messages from OHSU fearing they would retract the numbers.

Who knows….?  My body, my cancer and modern science rules.

Given my current weak status and high need for sleep, I am NOT keeping up with email. If you email me, hold your queries (please!) and instead just give me YOUR update. My blog will do its best to keep you posted.

If you live in the Portland metro area and want to help with daytime transportation or food support, let me know – again most of these helpers will get low contact with me – just talking tires me more than I can afford right now. I am officially dull but eager for your monologues.

Much love, marcy

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Love and Luck

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Pain was my companion for all of January, February and March of 2015. Extreme, escalating and new types of pain brought me to the ER early April 2nd. Today, April 7th, I was cleared to order real food! If I can keep it down, I can go home later today or tomorrow. A Fentanol patch now experiments with keeping me pain free for the rest of 2015.

The week was full of gloom and doom – dire language from docs predicted a direct pathway to death. My friends and I cried a lot as we planned my burial, memorial and more.

Yesterday four liters of fluid were removed from my belly. No doctor expected that I really had ascites. I pushed for an ultrasound. With ten pounds of ascites removed, my intestines could move to their real homes. My bowels can breathe and re-inflate to do their job. I might just be back in the business of living.

Is this event a big marker on my path? Yes. But really, as always, it means I need to find a chemo that can work. I can’t stay alive with the volume of cancer I have.

So with love and luck, and hundreds of candles lit, maybe we can cheer the chemo on. Thursday I am happily re-ensconced in my chemo throne. Hoping yet realistic.

Thank you all! Love, marcy

Falling Off the Tightrope

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I share a post below that my friend Holly did to a circle of close friends. I went to the Emeregency Room Thursday, April 2nd, early in the morning after my sister, a doctor in the Midwest made urgent calls to friends and me saying, “Go to the ER now.” Everyone scrambled to get dressed and I was out the door in five minutes, overnight bag in hand. All my complaints and moaning of the last few weeks neatly adding up to a bowel obstruction. As cancer expands it damages organs in its path.

I had enormous pain because what came into my system, food and liquids, could no longer exit. Below is the update as of two days ago. I have now been in the hospital four days with no food and just sips of water as we wait to see if my body can self heal. My first try at food may be Wednesday. Chemo is set for Thursday.  Warmly, marcy

Hi everyone,

I know you’re anxious to hear how Marcy’s doing – thanks for your patience.

Marcy is still at OHSU Hospital. She is stable and relatively comfortable, alert and very on top of her situation. That said, this is clearly the diciest her situation has been. A sudden downturn is possible at any time.

Marcy asks that you light a candle for her and focus your thoughts and well wishes and prayers on her.

Her doctors here at OHSU (and those consulting from the San Jose team) agree that continuing to wait and watch is the right course for her bowel obstruction. She will be in the hospital through the weekend and possibly for a full week as her bowels rest and – we hope – recover. If there are no further complications they agree that continuing her current chemo makes sense… her present situation is not a failure of the chemo, which after only one round hasn’t had a chance to prove itself.

Again, the hard truth is that the current chemo may not be beneficial even after additional rounds, or that other complications could arise.

All the more reason for us to continue to add our own positive energy in support of Marcy’s phenomenal life force and will to live.

Feel free to send Marcy photos of those candles. Email (Marcy@rop.org) remains the best way to let her know she’s in your thoughts (and keep her amused with snippets from your life).

With thanks for your love and prayers,

Holly

Holly Pruett
hollyjpruett@gmail.com
http://www.hollypruettcelebrant.com
503.348.0967

Ten Days of Okra

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The story was great even if the promise seemed slim. There was little to lose in completing Ten Days of Okra. I started serendipitously after a year of keeping it on the back-burner. I had told some friends over Friday night dinner about the okra cure as we sat worrying about my ca 125 being on the rise despite heavy-duty treatment. We felt a bit desperate. On Sunday, October 5th a friend showed up with a half dozen baggies of okra, parboiled to perfection. Barriers removed, it was time to start my okra cure.

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There was little instruction beyond the great story that motivated us. Larry, husband to Belinda my vaccine partner during the UPenn Trial, narrated the tale. He was tasked with picking up a swing set for their five-year-old. He pulled up to find an 80-year-old man rising from his rocking chair to greet him. ???????????????????????????????????????????????????The guy was full of stories and had lots of time. He wore his britches up towards his armpits. He amplified each point with the use of his remaining arm. He started by explaining the missing arm he lost at birth. It was a rough start in life. The unborn child was presumed dead and to save the mom they yanked him out, tearing off his arm and leaving him unattended while they worked on the mother.

He pinked up on his own finding oxygen and eventually made a noise that got him attention as a living creature. He views his entire life as a gift. He evangelizes the point. As a young man he was diagnosed with terminal cancer and sent home to get his affairs in order. Praying in his car he heard god clearly state, “If you eat okra for ten days you will be fine.” He did. He was there as proof. An 80-year-old orating from his front porch to every car that stopped.

Larry’s wife, like me, has advanced ovarian cancer. The old man shared the okra story then moved to an outside freezer filled with bags of okra. He handed Larry a big bag. Belinda and he were just finishing up their ten days as Larry summarized the experience with great humor. (Please note: okra is a powerful cleaner out of you gi system.)

A year later Belinda is the only patient in our trial that hasn’t recurred, keeping in mind that we don’t know all the other patients. I was game to try okra.

Okra relishes extended, hot weather. I am a northern gal. You don’t find okra fresh, frozen or pickled with ease here. But it is the end of the longest, hottest summer I recall in Oregon and my friend tracked some down at the state’s largest farmers market. I had to parse out what I had, not sure I matched the big bag pulled from the freezer in the story. But I ate it every day for ten days and loved it.

A great story should have a rousing end. This one might but not yet as today’s test results show a third uptick in my ca 125. I must replace carboplatin with a tougher alternative not because it is better but because my body can no longer tolerate the first choice. I don’t like loosing drugs; I don’t like increased side effects; I don’t like cancer growing. I wonder if I need to double (triple?) my intake of okra – desperate times call for desperate measures. If you find any pickled okra, send it on.

Ever hopeful

Ever hopeful

Reporting In

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Some periods of time are too dense with experiences to narrate. Add in the sharpness of the struggles, their lack of resolution, a heat wave, a chemo cocktail designed to knock you on your ass and a bit of silence might ensue. My focus is on putting one step in front of the other. Surviving.

The good news is we are surviving right now and still imagine August as a calmer month. Perhaps I will have vignettes to share then. I pack for my third trip to NYC since June 21st. This trip I do solo, despite my husband’s protests. With an uncertain travel future looming and mounting costs, I need to know that I can make whatever path I follow sustainable.

The last trip really felt vacation like even if we never got much beyond the infusion suite.

This trip will be down and dirty. I will be late to arrive, early to leave, just getting in my 29 hours of infusion time. Turned away at the deluxe, free cancer housing in midtown Manhattan with a terrace to delight

Me, reclining with chemo overnight bag pumping away, on the cancer terrace.

Me, reclining with chemo overnight bag pumping away, on the cancer terrace.

and a waiting list to match, I got adopted by an old colleague in West Harlem – a touching kindness and a treasured connection to my non-cancer life.

In lieu of truly filling you in on the now, I offer a brilliant short piece written by my first cancer pal, Bev. She has offered me solace as I learned to live with terminal cancer. This week she entered hospice. She will leave this world with a bit of my heart. Enjoy Mystery Bag, a little peak at living with cancer.

Mystery Bag by Bev Lipsitz

I was in a writing group for women with cancer. One day, the facilitator brought in a bunch of paper bags. She told us to pass them around and without looking, feel inside each bag.

Then she gave us each our own bag, and told us to reach inside,  and still without looking,  write about what we found.

When I felt inside all the bags, there was only one item I could identify. It felt like a swizzle stick. I thought I might write a story about a wonderful vacation in Hawaii.

But I got a different bag, with something I couldn’t identify by feel. Hmmm, what to do next…

Let’s try a CT-Scan. Fill the bag with contrast.  Lay it down and slide it in and out of a machine that looks like a giant donut.

Click, click. Breathe. Hold it. Breathe. Hold it. Click, click.

Sorry bag, the pictures show that it’s cancer.

Oh no! Now what do we do?

Surgery! Slice the bag down the middle. Take the damn thing out. When you’re done, staple the bag back together.

Oh this thing is ugly. Can we learn anything more about it? Sure…Slice it up. Send samples to the lab. The report comes back: its OVARIAN cancer. OH NO, everyone says that’s a bad one!!!!

Did we get the whole thing out? Leave any pieces inside? What if there are some crumbs that didn’t get out?  How do we get rid of those?

Chemotherapy! That should take care of it. Pour some poison in the bag.  What’s that? The poison burned a hole in the bottom. Anybody got any tape?

Oh by the way, even if this works for now, this cancer could come back. We might have to do this all over again…and again…and again…

This bag is a mess. I wish I had gotten a different one, maybe one with some candy in it, or a brownie.

You know what, though? This bag is stronger than I thought. Even with the cancer, and the poison, and the staples and tape, this bag can carry a lot of stuff. Don’t worry, bag. If that thing gets too heavy for you, we’ll bring in reinforcements. Wrap you in a blanket. Make you comfy cozy. Sit with you. Don’t be afraid.Unknown

 

Thank you, Bev, for your clear way of looking at our lives. Dont be afraid. love always, marcy

Camp Mak-A-Dream

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“No, No. Don’t make me go!” pretty much summed up how I felt as I lined up my gear for departure. I was stuck. I had promised to attend, a slot was held and my gentle husband expressed rare firmness as he guided me to the door. The rental car arrived and I was on my way in a snappy red car. My mood improved within minutes and I knew the decision to take this solo quest across four states, 700 miles and a vast, low population region to gather with other ovarian cancer sisters from across the country was more than sound.

Camp Mak-A-Dream was my destination. cmd-20th-logoOriginally designed for children with cancer, it now adds in sessions for women with ovarian or other (non-breast) cancers – an under-served population. I have enough friends that are camp zealots to apply eventually for one of the free slots (It’s all free!) even though I was reluctant to attend “camp.” Would it be one more humiliation in my new norm – life in cancer world?  But the new norm is all about letting go of ego; few of us make it through frontline treatments without losing control of every possible bodily function. Hairless and facing death, you are challenged to let go of all presumptions about what makes you important.

Nonetheless, choosing camp over an annual gathering of my organizing colleagues seemed a harsh statement. But I went to regain my groove.

Diagnosed in April 2010. Recurred in October of 2011. Still in my first recurrence two years and seven months later, it seems that I am now taking a rebuilding break from treatment to test my body. Rather than just staring into the endless abyss of treatment towards death, I am committed to re-entering the world of living. I wanted the daring of a twelve-hour drive alone through such a massive landscape to remind myself of freedom from treatment. Where better to re-prioritize my life then with a group of sisters who need no back-story.

I arrived a day late to a room full of women partying hard and yet quick to abandon their fun to greet me. I settled into my assigned cabin, found the Art Barn

Marcy's Camp Craft

Marcy’s Camp Craft

and, once oriented, bedded down to ready for a full weekend of activities. Time to climb the climbing wall, ride horses, zip line, attend a sex discussion for women living with hacked into bodies, screen the most excellent movie N.E.D (No Evidence of Disease – the rock band of GYN-Oncologists committed to giving solace to those living with disease and educating on symptoms.) And more….OUR RockBand!

The landscape is lovely. photo 3The camp is built around a subtly steep butte that we are all challenged to climb and we do, at paces that befit our bodies’ status, but no one avoided the challenge. Impressive indeed.

The staff and volunteers create a culture of cheer. It is a cheer that pervades the camp but never crowds out the awareness of mortality each women carries, the 18 deaths of campers in the past year are honored, the women in current crisis or hospice are talked about and tears of sadness blend in well as we exchange treatment realities and hopes. It is a setting of Livingly Dying.

I will close with what I loved most – the women supporting each other with mirth and attentiveness as we took on the challenge of rebuilding confidence in life. The zip line requires that you step off from the tree house ledge into open air. That step is huge. Some women froze as the minutes ticked on. From below we would cheer, reminding the temporarily stuck person that this was nothing compared to what we have already lived through – we cheered for however long it took. And then we each jumped into the abyss of life.

It's hard!

It’s hard!

Ladies, Put Down the Talcum Powder. Back Away for Everyone’s Safety.

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My older sister schooled me in many a feminine approach to life. Talcum powder sprinkled on the scalp soaked up oil slicks between showers. We stuck with powdering the scalp versus the, apparently, more common practice of powdering the genitals. The scalp may be far from the ovaries but both of us ended up with ovarian cancer – she at age 35, me at age 50.

Risky for your health?

Risky for your health?

I have no idea what happens to all those babies we sprinkle daily with talcum powder.

What I now know is “One report published in 1982 by the New York Times found that Johnson & Johnson was aware that studies indicated women were three times as likely to develop ovarian cancer if they used talcum powder on their genitals.”* And yet the products continue to stay on store shelves being marketed with no warning labels.

This Can Lead to Ovarian Cancer

This Can Lead to Ovarian Cancer

In October of 2013 “a South Dakota jury has determined that Johnson & Johnson failed to adequately warn consumers about the risk of ovarian cancer from talcum powder products, but no damages were awarded in the case.”* And there still are no warning labels on these same products.

(*http://fortworth.legalexaminer.com/uncategorized/jj-failed-to-warn-about-talcum-body-powder-cancer-risks/)

J & J has long targeted its marketing and products to women and yet they have failed again and again to protect women. An international drug shortage of doxil put ovarian cancer and AIDS patients at risk. J & J was responsible as their sole production plant in the United States was found tainted with urine and glass shards and more. Today a generic version of the drug, imported from India, is all that is available – the FDA fast tracked its approval without the usual tests but now there is evidence that the generic version is not showing significant efficacy. Thanks J & J. I would love to see them apologize, remove dangerous items still for sale and, frankly, pay for some of the anguish they cause.

A law firm is taking on the case. I have not vetted who they are or what they offer but I do share what I know.

Talcum Powder Ovarian Cancer Lawyers Launch New Website – http://www.prweb.com/printer/11542029.htm

http://www.talcumpowderovariancancercenter.com/

The Onder Law Firm’s baby powder cancer attorney team announces a new Talcum Powder Ovarian Cancer Center; a resource to the public, the website provides access to no-obligation baby powder ovarian cancer lawsuit case review with an attorney.

St. Louis, MO (PRWEB) January 31, 2014

A nationally-renowned law firm, known for its work in product safety litigation, announces the launch of the Talcum Powder Ovarian Cancer Center. The Onder Law Firm’s new website is a public resource on baby powder ovarian cancer lawsuits, and includes information about the link between talcum powder and ovarian cancer, as well as answers to frequently asked questions regarding baby powder cancer claims.

Talcum powder ovarian cancer lawsuits gained traction of late, thanks to the conclusion of the first lawsuit for ovarian cancer from baby powder in October of 2013 (Deane Berg v. Johnson & Johnson Consumer Companies, Inc., U.S. District Court, District of South Dakota, Case No. 09-4179). The jury in this federal court case found that Deane Berg, the plaintiff, had developed ovarian cancer as a result of frequent and regular use of Johnson’s Baby Powder and Shower to Shower, two Johnson & Johnson products that contain talcum powder. This court win has served as a catalyst for thousands of women and families of women to step forward to file baby powder ovarian cancer lawsuits. These cases are likely to join forces in a Multi District Litigation.

Scientific studies conducted as early as the 1970s have contributed to a body of research on the link between baby powder and ovarian cancer. Most notably, a meta-analysis published in Anticancer Research in 2003 (http://www.ncbi.nlm.nih.gov/pubmed/12820486/), which reviewed and combined results of nearly a dozen previous studies, concluded that women who use talcum powder in the genital area on a weekly basis have a 33% increased risk of developing ovarian cancer. Talc particles may enter the female reproductive through direct dusting or through the use of feminine products dusted in baby powder. Once inside the body, talc can migrate to the ovaries. Talc particles that reach the ovaries are thought to cause an inflammatory response, yielding conditions that are friendly to the growth of cancer cells, accounting for the increase in risk of developing ovarian cancer. Yet baby powder and other talc product labels have never warned consumers of the cancer risk.

The Onder Law Firm is currently accepting inquiries from women and families of women who have suffered from ovarian cancer and have a history of using baby powder for genital hygiene. Baby powder lawyers are investigating these inquiries for possible talcum powder cancer lawsuits against Johnson & Johnson. The Onder Law Firm has won major settlements for clients in the areas of drug and medical device recalls, as well as product and family safety. The firm is nationally-renowned for its work on window blind strangulation, and has notable expertise in fighting on behalf of individuals against powerful corporations. Women and family members of women who have been diagnosed with ovarian cancer and have used baby powder are eligible for a free evaluation with a talcum powder attorney, and may contact the firm through its Talcum Powder Ovarian Cancer Center website.

The Onder Law Firm also welcomes baby powder lawsuit inquiries from other law firms, either to handle these inquiries or work as co-counsel.

About The Onder Law Firm 
Onder, Shelton, O’Leary & Peterson, LLC is a St. Louis based personal injury law firm handling serious injury and death claims across the country. Its mission is the pursuit of justice, no matter how complex the case or strenuous the effort. Onder, Shelton, O’Leary & Peterson has represented clients throughout the United States, and other firms throughout the nation often seek its experience and expertise on complex litigation. It is a recognized leader in products liability cases such as window blind cord strangulation and pharmaceutical litigation. The Onder Law Firm’s talcum powder cancer lawyers provide information to the public at http://www.talcumpowderovariancancercenter.com/.

A Friend, Indeed

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One of my original friends in Oregon took on the role of advocate-in-chief when she heard of my diagnosis. She showed up the first night, phone to ear and stayed on the line until she got me the next available appointment with an oncologist. She is always there, often ahead of me in recognizing when I might need more hands-on assistance. She never waivers and has never said, “well, maybe….” in a way that makes me regret asking. She flew to Philly on her own dime for the trial intake interview. She is loyal and effective and most definitely the ‘secret weapon’ that coordinated entry into this clinical trial that required such pursuit.Marcy10:6:12

My diagnosis has impacted my circle of family, friends and colleagues in ways large and small. Holly, my advocate-in-chief, was a highly regarded political consultant when I was diagnosed. Now she is a licensed celebrant with a developing specialty in end of life support. (She is still regarded highly as a political consultant, it is just harder to access her time.)

Holly shared perspectives in the essay below, My Friend Marcy Has Cancer. I Don’t (Yet). Enjoy. Warmly, marcy

As a Funeral Celebrant and organizer of the PDX Death Cafe, death – and what happens before, during, and after – is on my mind quite a lot. And so I thought I should share an essay I started several years back about the big questions. The journal Cactus Heart was good enough to publish it this fall.

My Friend Marcy Has Cancer. I Don’t (Yet).9462551

I.

As the crowd of thousands marched downtown to the site of the Occupy Portland encampment, I left to run an errand. I’d been holding a handmade cardboard sign: “My friend Marcy is WAITLISTED FOR CHEMO – Thanks, Wall Street!”  Many of the people reacting to my sign – whether supportive or averse – thought I was the one waiting for chemo. Even the AP photographer who snapped the picture of my sign that ended up on Internet sites around the world asked, “Is that about you?”

They thought I was the one with cancer. In the coming days, I began to wonder.           

An hour after I left the rally, my belly began to feel like an air pump was inflating a basketball inside me. And I grew cold, so cold, despite my wool socks and heavy Guatemalan wool sweater. My teeth clacked and chattered. By the time I got home from my errands I had to unbutton the jeans that had required a tighter belt notch only that morning.

I forced my stiff, aching muscles up the stairs to my house and cocooned myself in a wool blanket in front of our fireplace. When the wracking chills still wouldn’t subside, my partner Amber found the thermometer. We were stunned when it registered 102.7 degrees. Must be broken. She took her own temperature – normal.

It was about 7:00 p.m. when I reached my doctor, who found it very odd: high fever and severe bloating, but no nausea, vomiting, or diarrhea, which you’d expect with food poisoning or a flu. We agreed that I’d try Tylenol and Gatorade and go to the ER if it got worse.

I woke up in the morning without a fever. But the bloating – I was still so unbearably full I found the idea of eating preposterous. I headed in to see my doctor. They took an abdominal X-ray and sent me home. Once they viewed the film, they wanted an ultrasound. I drove out in Friday afternoon rush hour having drunk the requisite 32 ounces of water – four tall glasses of liquid on top of the basketball in my belly. I was in agony.

I figured I ouldn’t get the results until Monday, but my doctor called and left a message around 6:00 p.m. It wasn’t a reassuring “all clear.” His voice sounded concerned. He told me to call him on Monday.

II.

Marcy’s unexpected diagnosis of Stage IV ovarian cancer had ripped the security blanket off our cozy community. In her early 50s, the poster child for effortless exercise and wholesome diet, Marcy exemplified clean country living. I had barely paused to admit my own emotional response to the pronouncement of her terminal disease. I had swung into action, attempting to impose order on this chaos by taking notes at her doctor’s appointments, organizing brigades of helpers, setting up communications systems.

The Monday morning after my ultrasound, I drove to Marcy’s house to accompany her and her husband, Mike, to see her surgeon, a highly respected gynecological oncologist on whom she had pinned her hopes.

During Marcy’s diagnosis 18 months earlier, Dr. C had gone in through her belly button to remove the small amounts of disease in her abdomen – debulking, they call it – but the cancer had already spread to her chest. Although the surgery and subsequent chemo had produced a blessed remission, her cancer holiday was over.  The disease was clearly on the move once again. Marcy’s meeting with her medical oncologist had left her in despair. She wanted the surgeon to offer something more aggressive, to deliver some hope through scalpel and sutures.

Marcy wore one of her trademark loose skirts. Despite her willowy dancer’s frame she had always favored prairie skirts that allowed her unrestricted movement (and she was constantly in motion). Just before her diagnosis, she had shocked all of her friends by favoring chic new slim corduroy jeans. But the bloating that accompanied her chemo had become, in cancer-speak, her “new normal,” and now it was back to skirts. I was wearing a loose skirt that day, too, to ease the bloat in my own belly. And to hide it.

Over the weekend I’d received an email from one of the national ovarian cancer listservs I had subscribed to, promoting the checklist of early detection symptoms we all need to internalize, like the monthly breast self-exam we were trained to do in the early days of the pink-ribbon movement:

Symptoms of Ovarian Cancer

–                Bloating

–                Pelvic or abdominal pain

–                Difficulty eating or feeling full quickly

–                Urinary symptoms (urgency or frequency)

I said nothing of my weekend worries to Marcy and Mike. An extrovert, I’m used to sharing (perhaps over-sharing) the details of my daily life. But not emotions – especially fears, especially existential fears of the sort that if spoken you imagine might obliterate you through their very utterance. Fears like: could two friends end up with the same supposedly rare cancer? Fears like: am I counting on my friend’s cancer to somehow provide me with immunity? Fears like: am I going to worry myself into getting cancer if I don’t already have it?

I was happy to stuff my own unknowns into the glove compartment for the morning; I preferred the immediacy of their fears to my own. I clamped down the impulse to distract us all with small talk or spiritual-silver-lining reassurances. We drove to the appointment in shared tense silence.

Marcy’s meeting with the surgeon delivered further devastation: he had nothing in his bag of tricks to help her. She fled the claustrophobic confines of the consultation room as soon as he left. I waited to get the paperwork and found Marcy and Mike in the parking lot. If I’d been unsure about conversation on the way there, I knew without a doubt there was nothing I could say now. Marcy was in full internal lockdown, desperate to be out of the car and back in her home doing the touchstone rituals she had devised to help her tolerate the intolerable.

As I pulled into the driveway she opened the door, “Sorry… rude…by myself.” She fled, with Mike not far behind her. I sat in my car getting her records release documents in order and offered a few inadequate words to Mike when he reemerged to fetch the documents. Then I pulled around the corner and called my doctor, expecting to hear reassurance in my ultrasound reading. Instead he told me there was a mass over my left ovary. He wanted an MRI to provide more detail. But first I should get to my gynecologist for an exam.

III.

Cancer World. It’s how writer Steven Shapin describes our modern existence in his review of the book “The Emperor of All Maladies: A Biography of Cancer” by physician Siddartha Mukherjee. Mukherjee calls cancer “the quintessential product of modernity.” Modern advancements mean more of us have cancer. We now outlive the diseases that killed our forebears before they had the chance to get the Big C. And the toxicity of our environment surely breeds more malignancy. How could it be coincidence that my father and his sister’s husband both died young of the same rare brain cancer, having shared no genetic link, only mutual employment in the family’s fuel tank cleaning business during my dad’s summer breaks from college and medical school?

Shapin, in The New Yorker (Nov. 8, 2010), argues that the modern impact of cancer goes beyond those who have the disease. He writes that historically, “The agonizing manner of cancer death was dreaded, but that fear was not centrally situated in the public mind—as it now is.” Shapin describes “two new kinds of beings in the modern cancer world.” One is the lucky patient who is now able to manage her once-fatal cancer as a chronic illness with miracle drugs like Gleevac. But Cancer World is also inhabited by the rest of us who are waiting and watching, “legions of the screened and the tested, who become more and more aware of the dangers battering away at their cells from the external environment and lurking inside, encoded in their genes.”

Just a month before my high fever and basketball belly, a surgeon excised a bad mole from my right tricep. The cells weren’t cancerous, but apparently that’s where they were headed. The mole is gone now, clean to the margins, but even in its absence, it increases my chances of developing a melanoma. So does the fact that my dad had a melanoma (separate from his brain cancer). And that my mom had another form of skin cancer, now known to be predictive of increased risk of the deadliest kind. My annual preventive visits to the dermatologist are now on a six-month schedule.

I’m a bit of an early detection nut. I’m not a hypochondriac (am I?); I don’t spend my time imagining myself filled with disease. But I don’t hesitate to call the doctor when I’m not sure what’s going on in my body. And I do every test they suggest.

I’m the daughter of a doctor, a man who knew he wanted to be a doctor as a young boy despite neither parent having graduated from high school. “He never went through the I-wanna-be-a-fireman-or-cowboy phase like the other little boys,” his older sister told me. “He just wanted to be a doctor.”

Thus I was born into my faith in the medical system. Not a blind faith: I believe that if you tell the doctor what’s going on, he or she will work with you to figure it out and will try to make you well or keep you safe. I have a strong sense of entitlement, being raised the daughter of a doctor, white and well-educated. They work for me, these doctors and diagnosticians. If I have questions, they will answer them.

And so I’ve been thoroughly probed and scanned and dissected. A lump removed from each breast in a procedure that strapped me to a narrow table, my arms pinned out to either side, crucifixion-style. A colonoscopy in my mid-40s. Suspicious moles carved out and shipped to the lab. X-rays, a CT scan, an MRI, and a PET scan to follow a nodule in my lung (nodule: another word for tumor, but writing tumor sounds melodramatic given its eventual disappearance).

And four years earlier I had been diagnosed with a bumper crop of uterine fibroids – inside my uterus; hanging from the outer wall on a stalk like a banana; embedded in the wall of my womb. Because I never had the heavy bleeding or cramping that plagues many women with such growths, the obvious solution, hysterectomy, seemed like overkill to me (fibroids are the leading cause of hysterectomy in the United States). But the bulk of my fibroids, equal to a six-month pregnancy, became tiresome. I felt obstructed from within when I did certain yoga poses, when I bent forward on my bicycle. My gynecologist warned of bowel and bladder difficulties; my chiropractor thought my breathing could be impaired and my skeletal system skewed.

I researched my options and opted for an embolization procedure to reduce the bulk without surgery. A radiologist inserted a catheter through my femoral artery and propelled microscopic pellets through it to block the blood flow from reaching the fibroids. I pictured them withering on the vine. A year later, my gynecologist reported with some amazement – she’d been a skeptic – that they had reduced in size by 50 percent, the optimal result expected from the procedure. Since then, I’d thought little about them, except during my annual pelvic exam as my gynecologist continued to marvel about the fibroids’ reduced dimensions.

IV.

The day after I accompanied Marcy on her futile pilgrimage to her cancer surgeon, I lay on my gynecologist’s exam table. She asked the question that seemed to solve the mystery of what had happened five days earlier.

“Did it feel like what you experienced when you had your embolization?” Yes, I realized, it was exactly like that. I don‘t know why it hadn’t occurred to me sooner. The procedure had involved an overnight stay in the hospital to control the high fever and severe pain that accompanies the death of the fibroid tissue when its blood supply is blocked. Now my gynecologist studied the original MRI that had guided the embolization and felt confident that it was consistent with the ultrasound that had alarmed the radiologist and my primary care physician. She would send both scans back to the radiologist to be sure.

It made sense to me now: some of the remaining fibroid tissue had gone into a death spiral. As it died – became necrotic, to get technical – the sanitation department kicked in. Fire up the incinerator (hello, 102.7 fever) and bring in the scrubbing bubbles of inflammation.

Still, I was relieved to get the call from my gynecologist three weeks later confirming that the radiologist had finally issued the all-clear. For now, anyway. The mass that had rung the alarm bell appeared consistent with the early pictures of the fibroids. But as with my dermatologist, my monitoring interval is now at the half-yearly rather than annual mark.

V.

My friend Marcy has cancer. I don’t. Yet. I belong to that tribe born of modern medical diagnostics: the precancerous. The Worried Well.7:4:10 HPMW

Six months after my belly bloat episode, on the eve of Marcy’s 53rd birthday and the second anniversary of her admittance to Cancer World, I joined her and three of her closest friends for a concert by N.E.D.  “N.E.D. is cancer talk,” Marcy explained in her email invitation. “It’s what we all want to hear after a CT scan – that that we are No Evidence of Disease.” By definition, Stage IV cancer is considered incurable, so the women in Marcy’s cancer network strive instead to “dance with N.E.D”.

Made up of six full-time women’s cancer doctors from around the country, N.E.D.’s slogan is, “Breast cancer has a ribbon – but gynecological cancer has a rock band!” The theater buzzed with snappy women dressed for a party. The band started playing – original hard rock ballads belted out by the lone female doc, a hyper-athletic cross between Natalie Merchant and Janis Joplin – songs of love and heartbreak for the ovarian and uterine cancer patients whose disease inspires a rock band but very little funding for research.

They brandished their guitars and drums and microphones and filled our ears with the beat of the human drama – the full catastrophe as Zorba the Greek called it. Marcy and her three younger pals hit the dance floor and threw themselves into it, giddy, gossiping, mugging for photos. I couldn’t quite go there. My mind was busy worrying, calculating how I could get Marcy a doctor like one of those up there on the stage, a rock star doctor who would feel as passionately about saving her as I did. And my heart was stuck on the story she and a support-group friend had told us before the concert started. A year before when N.E.D. had come through town, the youngest member of their ovarian cancer group had shown up and danced her ass off. She’d been on her feet the whole show, having the time of her life. And then she’d gone home and died – that same night.

Anything can happen at any time. Watching all my risk factors – submitting to the twice-yearly exams and all the scans and probes, keeping my body strong, and eating as healthfully as I can – provides absolutely no guarantee that I won’t get cancer or any other illness. Maybe a serious illness isn’t even in my cards. I could get struck by a car and killed as I ride my bike to Marcy’s house.

I reside in what Shapin calls “the risk-factor world [which] holds out hope for avoiding cancer while recruiting masses of us into the anxious state of the ‘precancerous.’” The insurance companies know that’s my address, too. Because I’ve done all the diagnostic tests recommended to me, my only option for individual coverage, pre-Obamacare, was through the state high-risk pool.

My friend Marcy is dying. I’m dying too. We all are. She knows what’s going to be on her death certificate. I don’t. The lumps in my breasts, the moles, the fibroids, the solitary pulmonary nodule – they’re all benign, every one of them.  So far.

During the episode of mysterious high fever and miserable cramping and the escalation of doctors’ concerns, I wasn’t afraid that I was going to die. I’m too good of a rational risk-calculator for that.

My fears reside at a deeper level. Am I big enough, small enough, brave enough, smart enough to proceed with open heart and open eyes through a world that gives Marcy cancer and me just a small dose of necrotic tissue? What sense can I make of a world that gives and takes away so randomly, that offers such exquisite beauty and love and joy and deals out such indiscriminate suffering? Can I make peace with a world that offers certainty, ultimately, about only one thing: my death, and the death of everyone I love?

Questions, I know, no MD or MRI can resolve.

Philly Trek # 10, Treatment # 6

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October’s trek to Philly was hard, as I feared it might be. My initial treatment in this trial back in early June 2013 had been my most challenging and now I was returning after a 55-day break. My body might just resist fresh toxins being introduced with a loud “Hell No!”

I am now in the maintenance phase. I get the same chemo cocktail, at the same dose followed a day later by the same vaccines but now on a four-week schedule versus every three weeks. This sequence happens for three months and then I get tested to ensure there is no disease progression requiring redirection into Phase Two. I hope to do this maintenance phase for at least the nine months for which we have the needed material (my tumor to mix with my dendritic cells). But I also hope the next eight months are easier!

My flights presented some sleep challenges – I arrived at 2 a.m. I awoke again at 7 a.m., very little sleep for this delicate unit. The chemo infusion was full of delays. I returned back to my borrowed condo, crawling into bed at 7 p.m. feeling tired and off. I awoke at midnight to blinding head pain, stumbled to the bathroom and preceded to vomit for the next twelve relentless hours.

The Philadelphia Chamber of Commerce, no doubt, was glad when I finally left town. My walk through downtown for the next day’s treatment included stops for further retching. I like to imagine I cast an elegant figure in my red boots, stylish skirt, tucked behind a well-placed Canada Dry delivery truck, sitting on a planter wall, leaning over as if fascinated by some plant discovery quietly voiding my quite empty stomach. I didn’t linger to ask. Once semi-stable, I continued towards my final treatments of this visit.

The vaccines were a piece of cake, thank you. I felt too lousy to exert extra energy to tense up in anticipation of the needle’s journey. When I was officially done, the team decided to infuse me with saline to replenish my fluids making the long flights home less burdensome to my depleted system. Since I was all about sitting anywhere, another shift in a chemo lounge chair seemed most divine.

Trek number ten ended with me home in my own yummy bed by the early hours of the next day. It was all just fine. But no photos or extras for this post.

Pinktober

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Stretching my legs between flights to Philly this week, I enjoyed the chaos of Chicago’s O’Hare airport. I might have endured more than enjoyed but as a colleague taught me years ago, why not pretend it’s all fun, and so I imagine these treks as the start of vacations, including the airport chaos. I walked past a series of five-foot by three-foot posters. There is little blank wall or quiet space so why it is I stopped at this one spot, I don’t know. But I stopped. And stared.

In front of me was a more than life-sized photo of the playwright and comedian Jenny Allen encouraging us to “Be Brave. Ask questions.” The public service announcement goes on to explain “I had abdominal pain and periods that weren’t normal for me. Menopause, I thought. But no, I had uterine and ovarian cancers. If you have symptoms lasting two weeks or longer, be brave. Go to the doctor. Ask questions.” The poster then promotes Inside Knowledge a link that apparently gets to the trickier details of identifying gynecological cancers.photo

There I was, full sized plus, promoting understanding. It even looked like Jenny and I might share the same hair stylist. An outtake of her one woman show “I Got Sick Then I Got Better” http://www.youtube.com/watch?v=TaEPW9Mo7Vc resonates many times over – especially the default way people need to emphasize how good you look as if to prove they don’t need to navigate the trickier terrain of finding out how you are coping with your cancer diagnosis.

This poster is great. It stopped me and I hope it stops many others who might be trying to understand their bodies in the face of menopause and other vagaries. But nonetheless, I was discomforted by the word brave. Would bravery have helped? I don’t think so.

Maybe, maybe if I had had any accurate information on ovarian cancer symptoms, I might have gotten into the doctor earlier. Such information could have allowed me a diagnosis of stage 3 versus stage 4 (the worst). And maybe, maybe being reminded to be persistent and pushy (two adjectives often ascribed to me, as is the word brave) could have also allowed a stage 3 diagnosis. But stage 3 in ovarian cancer is mighty terminal, just like stage 4.

The premise of early detection annoys me. Your internal organs are just that – internal. Until our science and medicine evolves, it is tricky to detect early the usually asymptomatic start of cancer. Early detection of these cancers almost always involves luck. (Remember, breasts jut out allowing exploration.)

I admire Jenny Allen, I appreciate this poster and even the silly full-page advertisement I found in a People Magazine earlier this year of two beautiful women putting on disguises to show just how tricky ovarian cancer is to identify. Bravo. Getting information out is always a valuable step. To me the best information to share is that ANY symptom that a person has for more than two weeks in a calendar month needs to get explained because that could most logically be a symptom of cancer on the move.

I flew out of O’Hare and into Philadelphia in the early hours of a new day. It was a beautiful night for my walk from the train station to my guest condo. The downtown skyline to my left was even more gorgeous than usual and it took me a few blocks to connect that the pink tube lighting of skyscraper rooftops was a nod to Pinktober – the month for breast cancer awareness. I did not remember to feel my breasts for possible lumps but it was a lovely sight.

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

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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. 138Last 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.hopestreetsign11

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 Coalition11well_gubar-tmagArticle

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.

Superpatient in Training – The Philly Chronicles – Trek 7

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How much long needles going into your non-numbed groin lymph nodes should hurt on a scale of 1 to 10 is negotiable. It does hurt. But mainly it vexes.

First, there is the waiting, as you lie exposed on the stretcher as the team assembles. Always, vaccine number one is being held in the air as the cast gathers. Why not hidden, nestled in its cooler with its sister? I don’t know. Then there is the small talk as I move my head in odd patterns to avoid seeing the needle. I was trying not to be obvious but by vaccine round four everyone knows I hate seeing the needle, not that that keeps it any more hidden. The radiologist is always the last to show, the lights go out and everyone stares at the ultra sound screen. Half the cast watches silently as the doctors negotiate over possible lymph nodes to target. Sometimes it takes a while for a lymph node even to be found. They look at the screen positioned across my belly, a screen that somehow lets them know where to insert the needle into my body below. Everyone judges the accuracy in this mapping negotiation by staring at the needles journey on the monitor – many opinions, one doctor with the needle, though. It is not a fast process. Eventually there is agreement that we are in a node and then, phew, we are done on that side.

It is important not to flinch because then we need to start over and I am a flincher! I try different tricks to anticipate the modest discomforts, to avoid flinching. Closing my eyes does not work. Imagining me on a beach in Maui does not work. Staring at the screen, talking myself through the needles arrival with its small allocation of pain helps. As does reminding myself that this does not need to please me.

There is an expression in Italian I have always loved, “Non mi piace.” It does not please me. I have found it a useful phrase over the years mainly for self-calming as compared to effective communication.

In 1989 I was on a work brigade to Portland’s sister city in Nicaragua, Corinto. The US was at war with Nicaragua. It might have fallen into that category of secret, dirty wars that many in the public miss, but regardless American taxpayers were funding the bombs that were falling. The brigade was to honor the memory of Ben Linder, a young Portland engineer recently assassinated while installing a water system for a small Nicaraguan village. Corinto is a port city sitting on a lovely stretch of open beach and ocean. At the time, all the fishing boats listed uselessly in the harbor. War damage.

The setting should have been enticing but it was not. We were there to work on the hospital. The open-air structure was well worn before the struggles of war. In the initial tour, I appraised the scene and decided I did not want to end up a patient here. The once sophisticated sterilizing equipment was now hauled to an outside fire pit. The surgeon talked about the daily power outages and what that meant with no back up generators and a patient open on the table. Chickens walked inside and out.

I had prepped for the anticipated vigor’s of the brigade by building up my physical strength, not learning Spanish – I had a naïve assumption that my knowledge of Italian would carry me. It did not. My host family was a mother and daughter. They welcomed me into their home, vacating one bed as they shared the other for my visit. A bowl was placed on a stool in the middle of the bedroom at night for toileting. The bedroom door was then locked barring us exit to the courtyard outhouse.

I was far too shy let alone confused by the bowl on the stool to use it. And the outhouse was far from enticing even if it was not an option at night. To boot, there was an incredible lack of potable water in the city due to a bomb hitting the cities main supply line. I decreased my drinking to solve all problems at once. Each day I felt a little less well. One day I felt awful and came down from the roof we were working on to collapse in the shade. It was the kids who realized I was seriously ill as they kept touching me and saying, “caldo.” They alerted adults who moved me into the doctor’s lounge for immediate treatment. My temperature was 105 and I was in preliminary kidney failure because I was not, in fact, drinking enough.

But when they came at me with an IV I remembered my resolution not to need treatment in this hospital but the only words that came to me were, “Non mi piace.” It’s a great phrase but not for communication outside of Italy. After a few days of fluids I was fine and learned a few more tips of self-care even in a war zone.

Back in the United States in 2013, far from any war zone, vaccine round four happened the first week of August. A friend had made me a pair of superman underwear for this round. It seemed borrowing some superpowers might better get me through this process. Vaccine four, I was ready. Two women get vaccinated each day and I had warned my partner of my plan at chemo the day before. She parents a toddler and so was easily able to pledge to wear her own pair because, in her house, every day, they are all matching superheroes! So me in superman undies, she in her superhero of the day, were ready for the vaccine process. Both of us agreed after it was our easiest round of vaccines yet. And that pleases me no end.

Superpatient Panties

Superpatient Panties

Surviving Recurrent Ovarian Cancer

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There is no recipe for staying alive with advanced, recurrent cancer – and ovarian cancer by definition tends to be advanced and recurrent. Alas. Luck seems to be the only constant in outliving the odds. My luck hasn’t seemed great of late as my first recurrence has involved a year of running through various chemos until low dose taxol brought me enough shrinkage and stability to start Phase One of a clinical trial at the University of Pennsylvania. I now travel cross the USA for treatment every two and a half weeks. Is it crazy to still feel so alive?

Why not feel alive?

I completed my fifth trek to Philly and second round of treatment this past week. Outside of the city being beastly hot, there are no riveting ups or downs to report. The thunderstorms that shut down all flights just as my plane backed onto the runway sucked but that is Mother Nature and my poor relationship with the gods of travel stepping in again. For an Oregonian, though, this new constant of daily thunderstorms most afternoons is its own form of excitement – Western Oregon averaging a mere three thunderstorms a year.

The routine is becoming just that. My sister, an emergency room doc and 18-year survivor of stage 1 ovarian cancer, travelled in to greet me. She is the big sister despite her smaller frame – 18 months my elder. Living far away with her own life of demands, our rendezvous in Philly allowed her to treat me to a vacation while holding my hand, at times literally, during treatments. As someone inclined to do it all solo, it was a lovely treat. Especially the finger to squeeze and the voice to soothe as the two vaccines to the groin searched out deeper lymph nodes to inject this time.

photoVacation meant strolls and delightful meals out in Philly, the city beyond hospitals.

A sister meant no luggage to schlep. A sister meant all needs all the time were met. A sister meant no need to explain or entertain, we could just be. My prescription for nausea was filled while I stayed being infused. Lovely. Although that did mean I navigated the fire alarm alone. The alarm droned, “this is not a drill” with flashing blue lights, while failing to say what you do when it is not a drill. Everyone in the ward was tied to toxic chemicals. It is a large building. The answer seemed to be for the staff to close you in your single room. Such solitary confinement never goes over well with this gal assigned a windowless chamber. So I left, found a lounge window ledge to sit on, infusion equipment in tow, and watched the fire trucks arrive. My last treatment overlapped with the collapse of a downtown building and the 12 survivors being brought to this center. I am getting used to the secondary dramas unfolding in a large urban hospital.

My ‘vacation visit’ with my sister was over too soon. I don’t know how to survive recurrent ovarian cancer but I do know enjoying the moments probably does not hurt. Hopefully, getting into one of the most exciting clinical trials of the times will help as well. Stay tuned!

Big News Story – Immune Therapy Offers Hope in Ovarian Cancer

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Preliminary trial results were released on Saturday to great fanfare. Here is an article for those who like details.  xo marcy

Immune Therapy Offers Hope in Ovarian Cancer

By Michael Smith, North American Correspondent, MedPage Today

Published: April 07, 2013
Reviewed by Robert Jasmer, MD; Associate Clinical Professor of Medicine, University of California, San Francisco and Dorothy Caputo, MA, BSN, RN, Nurse Planner

Action Points

  • Note that this study was published as an abstract and presented at a conference. These data and conclusions should be considered to be preliminary until published in a peer-reviewed journal.
  • A novel two-step immunotherapy process appears to be effective in nearly three-fourths of women with advanced ovarian cancer when combined with chemotherapy.
  • The process begins with treatment with a personalized vaccine derived from the patient’s own dendritic cells and is followed by a second step, called adoptive T-cell therapy, in which immune cells are reinjected into patients after being removed, stimulated, and expanded in the laboratory.

WASHINGTON — A novel two-step immunotherapy process appears to be effective in nearly three-fourths of women with advanced ovarian cancer, a researcher said here.

The process begins with treatment with a personalized vaccine derived from the patient’s own dendritic cells, according to Lana Kandalaft, PharmD, PhD, of the University of Pennsylvania.

In 65% of 31 patients in a small nonrandomized trial, the vaccine alone led to either stable disease or partial response, Kandalaft told reporters at the annual meeting of the American Association for Cancer Research.

A subset of 11 patients went on to the second step of the process — called adoptive T-cell therapy — and 73% had what Kandalaft called a “clinical benefit” — either stable disease or a shrinking of the tumor.

Most patients with advanced ovarian cancer relapse within 2 years, she noted, and most die within 5 years. “There is definitely a vast unmet need for the development of novel, alternate therapies,” she said.

The process appears to offer new hope for patients with recurrent, progressive ovarian cancer, Kandalaft said, adding that some participants in the trial have had stable disease for several months.

Indeed, she said one woman, who had relapsed twice and had undergone three debulking surgeries before being given the dendritic cell vaccine, has now had 45 months of progression-free survival.

“To this day, she’s still in quite good condition,” she said.

The role of dendritic cells, she noted, is to act as “spies” — collecting information about potential targets and bringing the data back to the T cells, the “soldiers” that kill those targets.

In the study, Kandalaft and colleagues kept participants’ tumor cells alive after debulking surgery and then isolated dendritic cells through apheresis. The cells were exposed to tumor antigens and then injected into patients’ lymph nodes, along with intravenous bevacizumab (Avastin), over about 3 months.

In 20 of 31 patients, Kandalaft reported, the vaccine alone led to clinical benefit — 17 patients had stable disease and three had a partial response. The vaccination was well tolerated and elicited tumor-specific T-cell responses against various ovarian tumor antigens, with some patients experiencing prolonged progression-free survival.

The 11 patients who went on to the second stage of the process had their T cells removed, stimulated and expanded in the lab, and replaced in large numbers. The transfer amplified the antitumor immune response, Kandalaft reported, because the T cells had already been educated by the dendritic cell vaccine to attack tumor cells.

Of the 11 participants in the second stage, seven had stable disease and one had a complete remission, she said.

The study “shows that it’s now possible to devise very efficient and complex but feasible combination strategies (starting with) a vaccination that will basically point the immune system in the direction of the tumor,” commented Louis Weiner, MD, of Georgetown University here, who was not part of the study.

“And then you can further expand that response in a very productive and useful way through an adoptive transfer of activated T cells that have been educated to attack that particular set of antigens,” he told reporters.

Such a combination approach, he said, has the potential to “overcome some of the innate resistance mechanisms that cancers use.”

To Philly and Back!

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I got a taste of my possible new normal last week and it wasn’t bad. In fact, it felt a lot like my old normal, a life I did quite love. Facing mortality I am determined to enjoy whatever each day brings, but that attitude can belie a deeper truth of who I truly am and the life I would like to live. I like being engaged, busy, in the thick of things. I have adapted well to being ‘in the thick’ of life on the infusion ward and the acupuncture clinic but there is a bit of guise in that.The week, starting with last Saturday, March 30th, was BUSY. I knew it would be, so trying to ration my energy, I had even asked my dearest friend not to fly out for my birthday party (sigh) fearing a visit on top of big events would be too much. Even with Stephanie not joining us from Minneapolis, it was quite the gathering. People drove in from many directions to create such a mass that few individual conversations happened but oh what a mass of energy and fun – what you would hope for at a dance party.

The space was lovely, the weather beyond perfect, the host team award worthy and a cake that I never got to sample perhaps in an inadvertent boycott of the cutting into such a thing of beauty. The cake was massive and covered with the ‘best of’ photos of yours truly collaged artistically together.

I stayed on the dance floor and despite my fears that my lung capacity might reduce my ability to boogie, I did not return once to the designated ‘marcy rest throne’. It was wonderful dancing with so many dear friends. At the height of the evening some loud bangs erupted. Oops, the accumulated sound had detonated a few wine glasses. It was time to start winding down.

I had a day of rest before flying off to New York City. Two big east coast events had been foisted together without much ease. The first was a two-day conversation closing out a two-year thinking/action project on engaging the white working class in progressive identity. ROP was among four other groups to feature their work. It was a typical such gathering – 12 hour days, an expectation of your mind always being on.

A special needs person such as I is theoretically accommodated but there is only one size fits all participation. Sit up, stay engaged at the table and maybe, if you are determined, manage 8 hours of sleep. Day one, I functioned. Day two, I functioned. Day three, I functioned and I stopped holding my breath waiting for a glitch as my body rebelled. For five full days I functioned just like any other member of the working world. And I loved it. Luckily, I was able to manage quality food and exercise (there was no day that I walked less than five miles – god bless Manhattan.)

The formal meeting ended. I switched to family housing, slept a full 10 hours and had enormous support in the logistics of the second adventure. I awoke at a leisurely pace on Thursday to walk the 3 miles to Penn Station, train to Philly and exit the train to find the one and only Holly Pruett waiting at the top of the escalators prepared to snap a photo to document this moment – after 18 months we were going to walk to University of Pennsylvania in Philly for a medical appointment. We were finally here.

Holly apologized for her ‘wardrobe malfunction’ but I knew she was the perfectly attired companion for my assignment today to prove to UPenn that I am in ideal health. Holly looked young, fashionable and vital, loaning a definite edge to my efforts. She had clearly spent her proceeding 10 hours in Philly preparing to be a tour guide as we walked the mile from the train station to UPenn. If this was to be my new home, I should start learning about it. (Philly is the 5th largest US city, has five major sports teams and a superstitious relationship with where William Penn’s statue resides in the relative height of downtown Philly. There is more, much more, but we hope to have time to share the delights of Philly.)

In no time we were at the stunningly new, open design of the research wing, signed in and waiting for our appointment to start. Both Holly and I sighed with enormous relief when they acted like “yes, we are expecting you.” All the intake folks were like “really, you are traveling here from Oregon?” YES! WE ARE!!!!!!

The person we have negotiated with for 18 months was there in the flesh and blood. Everything started with hugs. The repeating of information, often having a flash of panic, ‘wait, could sharing this disqualify me?’ Meeting the doctor in charge, Dr Tanyi, who like my new OHSU doctor, is both brilliant and communicating to me through a Slavic accent that I have yet to master. With great energy he reviewed the theory behind the TWO (who knew) clinical trials that I was being screened for. Between needing to remind myself ‘I am truly sitting here’ and the accent, even with my great familiarity with the trial theory I know I missed details.

After the physical exam, he declared me an ‘optimal candidate’, posed for a group photo and left us to meet the project lead and work out the details like the dates for my formal signing of paperwork (May 8th), apheresis/dialysis (May 22nd) and the first vaccines over the three days of June 4th, 5th and 6th with subsequent vaccines every three weeks thereafter until I decide to stop, we run out of my tumor or the cancer grows.

I arrived home after midnight last night. I am thrilled to be home and ever hopeful that by choosing to loan my body to the frontier of medical research forward steps will be made in taming ovarian cancer and extending my own life. Formal signing of paperwork will not happen until May 8th but there is every reason to belief that, courtesy of many, I will be enrolled in the Phase One, cohort four arm of this trial. Let’s keep our fingers crossed for just a little longer.

What a week! Thank you all for the great send off.

love, marcy

 

1st Press Release on *My* UPenn Trial

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Only for those who like details. This gives you a sense of why it has taken me 15 months to get this close to being admitted. Everyone wants in because of their reputation on being on the front lines of extending lives of cancer patients.

warmly, marcy

Two-Step Immunotherapy Attacks Advanced Ovarian Cancer, Penn Medicine Researchers ReportPersonalized Vaccine Made from Patients’ Own Tumors Spurs Immune System

PHILADELPHIA — Most ovarian cancer patients are diagnosed with late stage disease that is unresponsive to existing therapies. In a new study, researchers from the Perelman School of Medicine at the University of Pennsylvania School of Medicine show that a two-step personalized immunotherapy treatment — a dendritic cell vaccine using patients’ own tumor followed by adoptive T cell therapy — triggers anti-tumor immune responses in these type of patients. Four of the six patients treated in the trial responded to the therapy, the investigators report this month in OncoImmunology.

“What we proved in this study is that this is a safe treatment strategy,” says co-first author Lana Kandalaft, PharmD, MTR, PhD, research assistant professor of Obstetrics and Gynecology and director of clinical development in the Ovarian Cancer Research Center. “It is a walk in the park for patients, especially compared to standard chemotherapies and surgical treatments for ovarian cancer – literally, some patients left the clinic and went for a walk in a nearby park after their treatment.”

The findings follow research by the study’s senior author, George Coukos, MD, PhD, director of the Ovarian Cancer Research Center at Penn, who showed in 2003 that women whose ovarian tumors were infiltrated by healthy immune cells, called T cells, tended to live longer than women whose tumors were devoid of T cells. That observation and other subsequent ones suggest the patient’s immune system is trying to fight off the disease but can’t quite muster the strength to beat it. Therefore, investigators have been trying to find ways using patients’ own tumor cells to boost the immune system’s power. 

In the current study, Coukos, Kandalaft, co-first author Daniel J. Powell Jr., PhD, research assistant professor of Pathology and Laboratory Medicine, and colleagues treated six women with advanced ovarian cancer in a two-staged immunotherapy protocol in which they utilized a dendritic cell vaccine created from tissue in the patients’ own tumor, which was stored at time of surgery. All of these women’s cancers had progressed on standard of care chemotherapy.

In the first segment of the study, the team prepared an individualized dendritic cell vaccine for each patient. They harvested dendritic cells from each patient using apheresis, the same process volunteers go through when they donate platelets or other blood products such as those collected for stem cell transplants. Kandalaft and colleagues then exposed each patient’s dendritic cells to tumor extract produced from the woman’s own tumor, which teaches the dendritic cells who the enemy is. After this priming, the investigators vaccinated each patient with her own dendritic cells and gave them a combination chemotherapy regimen of bevacizumab and cyclophosphamide. Because dendritic cells are like the generals of the immune system, they then induce other immune cells to take up the fight.

Of the six patients who received the dendritic cell vaccine, four developed an anti-tumor immune response, indicating that the approach was working. One of those patients had no measurable disease at study entry because all of it had been successfully removed during surgery. She remains in remission today, 42 months following vaccine treatment. The other three who had an immune response to the vaccine still had residual disease and went on to the second segment of treatment.

The team harvested T cells from each of these three women. Using a technique developed at Penn, they grew the cells in the laboratory, expanding their numbers exponentially, and then reintroduced them into each patient after she underwent a lymphodepleting chemotherapy regimen. Because the T cells had already been trained by the dendritic cell vaccine to attack the tumor cells, the adoptive T cell transfer amplifies the anti-tumor immune response.

Two of the women showed a restored immune response after the T cell transfer. One of the women continued to have stable disease, whereas the other had a complete response to the therapy.

The researchers say it is too early to say whether this type of therapy will be effective in a large number of ovarian cancer patients, but the early results are promising. First, and foremost, she notes, the two-step approach appears safe and well tolerated by the patients. Additionally, the team saw a correlation in both treatment steps between immune responses and clinical benefit, suggesting that it is, in fact, the immune response that is holding the disease in check.

With these encouraging results in hand, the team has opened a larger trial in which they have already enrolled about 25 women and aim for up to 30 more. The new protocol uses an improved vaccine platform and an optimized adoptive T cell transfer protocol. The PI of this study is Janos Tanyi, MD, PhD.

“Large clinical trials have shown that intensifying chemotherapy doesn’t improve outcomes for women with advanced ovarian cancer,” Coukos says. “So we need to explore other avenues. We think the combinatorial approach of both immune and chemotherapy is the way to go.”

Other co-authors from Penn include Cheryl L. Chiang, Janos Tanyi, Sarah Kim, Kathy Montone, Rosemarie Mick, Bruce L. Levine, Drew A. Torigian, and Carl H. June. Co-author Marnix Bosch is from Northwest Biotherapeutics in Bethesda, MD.

This study was supported by National Cancer Institute Ovarian SPORE grant P01-CA83638, National Institution of Health R01FD003520-02, and the Ovarian Cancer Immunotherapy Initiative.

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Penn Medicine is one of the world’s leading academic medical centers, dedicated to the related missions of medical education, biomedical research, and excellence in patient care. Penn Medicine consists of the Raymond and Ruth Perelman School of Medicine at the University of Pennsylvania (founded in 1765 as the nation’s first medical school) and the University of Pennsylvania Health System, which together form a $4.3 billion enterprise.

The Perelman School of Medicine is currently ranked #2 in U.S. News & World Report’s survey of research-oriented medical schools. The School is consistently among the nation’s top recipients of funding from the National Institutes of Health, with $479.3 million awarded in the 2011 fiscal year.

The University of Pennsylvania Health System’s patient care facilities include: The Hospital of the University of Pennsylvania — recognized as one of the nation’s top “Honor Roll” hospitals by U.S. News & World Report; Penn Presbyterian Medical Center; and Pennsylvania Hospital — the nation’s first hospital, founded in 1751. Penn Medicine also includes additional patient care facilities and services throughout the Philadelphia region.

Penn Medicine is committed to improving lives and health through a variety of community-based programs and activities. In fiscal year 2011, Penn Medicine provided $854 million to benefit our community.

 

Another Failed Chemo – Goodbye Doxil

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Just a quick update….the burning is done.  After completing 4 of the 6-8 intended rounds of doxil I will get no more.  My burns were too severe (3rd degree) and the drug not effective enough.  Alas.

I am to start taxol on a weekly schedule and continue with avistan.  Taxol (in combination with carbo-platnum that I am now allergic to) is a common starter treatment for many cancers.  It’s what causes the bald head although I might bypass balding and instead face more hair thinning with the lower dose infusions.
In the meantime, I am urged to seek out a clinical trail by my oncologist.  I might prefer he do that but kaiser has strengths and weaknesses.  Sometime this Fall, presumably October but I am trying to get someone to confirm that, I start medicare (2 years 5 months after being diagnosed with a ‘catastrophic illness’.)  I had hoped to stay with Kaiser.  One downside of Kaiser is that it is not insurance – it is health care (what a concept) but they only pay for their health care.  They have been most generous with me but that does not include off site clinical trails.  And the way most clinical trials work is they provide the magic drug (or placebo) but your insurance covers the simultaneous delivery of whatever is the standard of care drug(s).  Picking up the cost of your own standard of care treatments is not doable.
So, that means that as I opt in to medicare I either need to ditch kaiser so that i can better access clinical trials or, modest good news from today, I could opt to stay with kaiser once on medicare and medicare would pay 75 – 80% vs 100% towards clinical trials.  So, maybe that is doable….?  (Oh for a single payer system that would allow me to focus on being sick – although barring that, kudos do go to both Kaiser and Medicare.)
In the meantime, a few of us are traveling to Seattle in early September for the every other year international conference on ovarian cancer – maybe a door will open there. It’s all researchers presenting to their peers but they allow patients to attend for free.  Very cool.
I arrive to the Seattle conference as a chemo failure.  The list of chemos that dont work for me is mounting. My cancer grows.  Now would be a good time for a door to open.  I am concerned to leave doxil, a drug I had pinned my hopes on, but I am pleased to stop being burned alive.  And how I will cope with weekly taxol we will know soon enough.
Thanks for all your interest, compassion and support.  xo marcy

Hobbling Forwards

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I spent an hour yesterday cursing my way through our households vast ruler supply seeking a devise that measured in centimeters.  I was determined to respond to my newly arrived test results with my head not my heart (or whatever part of me ceases to function when it encounters dreaded words like new and growth and lung.)  With a ruler found that used centimeters I could make measurable those words.  And so my test results that initially took my breath away were neutralized a bit.

I did not get a wonderful result on my ct scan of this week.  But it was at worst soft bad and, perhaps, almost neutral.  I dont see my doctor until Friday so I still speculate.  Of my 5 cancerous nodules in the abdomen and pelvis 3 showed modest shrinkage, two showed modest growth.  Two new shadows have now made it in to my left lung for the first time but only time will tell if they are indeed cancer and if they chose to grow.  My right lung stays stable.
My big goal these days is disease stability.  My current pattern of some shrinkage and some growth, might average out to minor changes in disease volume but they are not disease stability.  If I was not midway through a new treatment regime these results would be more dire.  But since these drugs are slower to work, we can look at the possibility of positive results around the corner.  Why the hell not.
Its not been an easy few weeks.  The main drug I am on, doxil, aka the red devil, requires enormous preemptive work to minimize the devilish impacts of burning, burning, burning.  A chemo buddy (thank you, Holly) helps me ice during treatment (not easy!) and then I stay on ice as much as I can for the next few weeks.  This drug is a cumulative one so once the burning starts it only gets worse with each cycle.  There is no real solution for it – ice, salve, ice, salve.  Avoidance is your best plan. I now better understand the starting suggestion of no repetitive motions which made little sense when shared as advise – why did that mean no washing of dishes or housework.  But now I get it.  (Of course, they are too shy to say no intercourse.)
My poor butt brings me to tears as I try to find clothing that I can wear and a chair that can accommodate.  And then there are the poor hands and feet.  The left hand curling to a painful claw for the majority of each treatment cycle.  The feet look better but hurt, hurt, hurt especially when rested in the only shoes I can still wear.  I hobble and curse.  And by bedtime, cry.
Initially, I so wanted the test results to be good enough to keep me on doxil because that would mean that there was some positive news after a long year of disappointments.  But the night before I got the test results I finally decided I could endure no more of this being burned alive.  The test results arrived as the peak of the burning passed.  I live in the now and right now the residual sores on my butt, hands, and feet are manageable.  I presume that my cheerleaders and I will manage another few cycles of this hell if the doctor recommends it.
For those who visit, you may witness more pain.  And you may be asked to sweep a room, or straighten the bed.  (There is just so much that I can not do while on this drug.  And Mike is needing to do so, so much.)  If everyone completes some minor task, the house may stay neat and that is the kind of detail that makes the world of difference right now.
In the last week, as I tried to relocate from one spot to another with enormous pain, I told Mike, “dont ever let anyone say ‘that at least she is out of her misery now’ because I can accept this pain.”  Of course, a few days later, I wondered. But pain passes.  And then I stare in awe at a flower dropped off by a friend and appreciate being here.  This is hard but so is life which I so choose. And so that is my small update.
Luckily, by Saturday’s dance part I should be at my peak of recovery – hope to see you there.  xoxo marcy

Dancing and Thinking Out Loud

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Monday, July 30th , for better or worse, I will be profiled live in the second half of Oregon Public Broadcasting’s Think Out Loud.  If you go here http://www.opb.org/thinkoutloud/shows/marcy-westerling/ you can even pose a question – ones that bring it back to rural organizing are valued.

Marcy Westerling

AIR DATE: Monday, July 30th 2012

POSTED BY: JULIE SABATIER

At 53, Marcy Westerling is taking stock of her life and legacy as a community organizer. She’s also making tokens for her friends to remember her by. Two and a half years ago, Westerling was diagnosed with terminal ovarian cancer. She says,

“I can accept dying and dying young. What I’m less OK with is disappearing…I want to be a mentor for younger organizers and allow myself the gift of feeling like I’m going to be carried forward even though I don’t have control over how long I’m here.”

Westerling is probably best known for founding the Rural Organizing Project (ROP) in the 1990s. ROP is an advocacy group focused on sexual and racial minority communities in rural Oregon. She’s stepped back from her leadership work at ROP, but she remains very involved as a both a mentor and keeper of the group’s institutional memory.

Do you have experience with the Rural Organizing Project? What would you like to ask Marcy Westerling?

While the OPB show might be fun, what will be much more fun is a dance party slated for Saturday, August 18th.  The best DJ is donating his time and great food and beverages are being lined up.

A Summer Dance Party! Save the date – share the invite

To benefit the Rural Organizing Project & all our psyches

Hosted by Marcy Westerling* & Cara Shufelt

Put on your dancin’ shoes because ROPers and urban friends are gonna dance the night away in Cara’s backyard!  (With great food and drinks and music.)

When: Saturday, August 18th 6-9pm

Where: Cara’s Backyard:

What: An evening party to mix & mingle, hang with ROPers & Marcy, dance the night away to a live DJ and support the work of ROP!  Great tunes and good times.

* special note:  I will be getting my inside look scan results the week prior – these determine if this chemo is working after a long year of limited success in containing my cancer.  So, you can well imagine that dancing, if the results are good (please!) or bad (wah!), will be very, very therapeutic.

1st Recurrence & 3rd Chemo Drug Tried

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This morning the wedding ring came off.  It wasn’t an easy process but it was time.  The finger is swollen and everything chafes these days.  I have dubbed this chemo the chemo of 100 indignities.  I started by calling it 1000 but really, 1000 I eventually wondered.  Why exaggerate?  It’s the first time I have felt my body a form of entertainment as I never know what indignity will show up with the start of a new day.  I am a science experiment, at least to me.  The indignities are small but add up.  Most wrong of all they have thrown me back into migraines that had all but disappeared once the surgeons claimed my ovaries two years ago.  After living with migraines since age 12 it seemed the gods had their own sense of decency – we will give you metastasized ovarian cancer but relieve you of the chronic burden of migraines.  You will not be given more then you can bear kind of thinking – well, that honeymoon seems terminated.

So, I continue with my 8th month of non-stop chemo (and 2 years with 22 infusions thus far – a lot by any standard) with my newest drug doxil aka the red devil. It drips in you an actual orange-red adding some rare color to the infusion room.  I wont know until August whether I am approaching disease stabilization, the goal.  I am not looking forward to that test.  This next infusion I add in an additional drug every two weeks, Avistan.  I have swung wildly back and fourth on starting this drug these last 8 months, agreeing to it just to cancel a day or two prior to its start.  This time I wont cancel.  I am resolved. Technically I am lucky to have it offered to me since it is not officially cleared for ovarian cancer yet by the FDA (and they just revoked approval of it for breast cancer – a non confidence booster…but that is cancer care in 2012 – one crap shoot after the next.)  Starting Avistan probably means that I will never go off chemo, which just clarifies my status in another uncomfortable way.  And it is notorious for it’s own, more dramatic, set of side effects.

All the above is very real to Mike and me.  And yet we plod forward with relative ease and happiness.  We have another community garden plot, this one an actual block from our house. The front and side yards are filled with growing space and another garden will be added this summer. Growing is a belief in the future. Growing is accepting life cycles.  Our newly added jasmine releases its fragrance today.  I have finally gotten back to quilting after a two-year creativity stall.  Often our biggest worries are the same mundane ones we all face – can we train the cat not to wake us in the night, where do all the dirty dishes come from, why is it raining again?  

Perhaps, though, we live with gratitude more ever present.  For 14 of the last 24 months we have relied on meals dropped off once/week and other gestures to keep us going.  I am sure the stalwart ranks could use some new helpers.  If you are game to sign up and give someone else a break contact Holly Pruett who runs the lotsofhelping hands site – email her at hollyjpruett@gmail.com.  Please know that every one of your kindnesses is deeply appreciated.

love, as always, 

marcy

p.s.  Cynthia Nixon, the actor who is famous for her role in Sex and the City and who just finished playing the lead in Wit on Broadway, compared her own breast cancer to her character’s ovarian cancer like this:  “It had the same name,” she said. “But a cat can be a kitten or a mountain lion. They’re both cats. That is, ovarian is much more ferocious.”  The woman who shared this quote found the comparison very useful because she feels that most people who don’t have experience with cancer assume they’re all pretty much the same.  I am not sure they really are that different – what matters is stage at diagnosis.  But since ovarian is almost always diagnosed late we are ferociously occupied.  And, of course, pathetically under researched compared to other cancers. Don’t forget early detection depends on you – listen to your body and the small discomforts that PERSIST for more than 11 days in any calendar month. 

Travels & Work Despite Metastasized Cancer

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I have been quite remiss in my postings but as some have noted, less news can be imagined as good/neutral news. Health wise I hope still to be stable in remission. My last blood test in April was my first upward incline of numbers, very scary for what it could portend but too isolated to indicate much yet. I chose not to get another test prior to departing for a month reasoning the most obvious result would be another uptick in numbers walking me out of remission and the best results just kept me waiting for the next test and the test after that eg my new status quo. Cancer vacations are fun and all the more so when combined with a real vacation. I opted for the cancer vacation.

Back in late October 2010 I received an email you never anticipate. It was simple, stating “We’ve begun planning the Open Society Fellowship Reunion, which will take place in Budapest and Szilvasvarad, Hungary from June 7-11, 2011. At this point in time, we’d like to ask you to confirm your participation in the event. “ A part of my life that I had tossed aside when diagnosed was further travel. Travel, especially work travel, is inherently stressful for the body, the correlation between stress and ovarian cancer is more substantiated than for other forms of cancer and it was an obvious item to delete. I decided that I would not travel again. That stayed my thinking norm until this email popped up. My immediate response to the email was ‘Hell yes, I am going!’ And then my travel ban was on weak footing. Thus, in January I traveled to NYC for a rural convening. I returned home to plan a much more ambitious trek that was bookended by two political commitments – the long planned convening of front line organizers to Map the Right up in the Adirondacks and my Hungarian visit to the castle. Wanting to avoid the radiation and stress of back and forth plane travel, I needed to be gone for a month. And thus began the planning for a 32 day journey.

I just returned home late last night from these adventures. I cannot recall a single dull or sour moment. My body, after some initial drama, settled into the adventures. I was able to practice decent patterns although my diet rules dissipated fast. Blue Mountain Center, the retreat site in the Adirondacks that was stop one, has phenomenal food all healthy but they seem not to have gotten any bulletins regarding sugar. Not only did every meal offer dessert but they have clear glass cookie jars offering different home made cookies at all times….they have no one minding the cookie jars which I took total advantage of! And once my sweet tooth was activated little was safe.

My final two and a half weeks were in Hungary where one traveler quipped ‘you could well experience a soviet bloc.’ It’s a heavy diet laden with meats and sweets. Salads are true work to find. My post surgery body is at high risk for bowel obstructions leaving me pretty nervous but suffice it to say, I survived but was eager to return to my magic vegiemix for blended vegetable drinks to launch every new day starting with this morning!

It was lovely being gone and it is lovely being home. Seated here writing I look out on our lush yard, have already walked to get fresh produce and hope to walk over to a friend’s house later today to meet their newly born baby. It’s not been 12 hours and already Kaiser has summoned me for new appointments and tests. The full cancer vacation may be over but I hope to maintain a new balance between my dire diagnosis/prognosis and the lightness and beauty of the world that I get to enjoy.

When I first agreed to these travels I viewed them almost as a ‘goodbye tour’ which was how I coped with my new world order – everything was about closure. As I travelled, though, my commitment to closure faded. I awoke each day and found hours passed before I ‘remembered’ that I was on borrowed time. I intend to stay grateful for every moment I have but my travels returned me to the living as I made new commitments, planned for a full future and hope, as we all do, for the best of luck and medical care to keep me alive.

I would share more details of the travel but for now, as a woman with many commitments, I had best get back to work.

With love, marcy

Life in First Remission

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I apologize for being so quiet but settling into a new house, new routines and submitting a new work proposal have kept me busy. Today marks the 6-month anniversary for being diagnosed. And I could barely care.

I wish I didn’t have metastasized cancer but if I do, so be it. I have more fun things to pay attention to. (Not that understanding this disease is not fascinating.)

I wont deny staying sobered by what comes next and when. I am scared for my early November tests and appointments that look back inside for the first time since early May and might see more than I am ready for. I still can’t face the grief of looking back at what precious parts of our lives we have given up. But all in all, me having stage iv ovarian cancer just is. Whatever.

The new house is lovely and serene. My new neighborhood reminds me of Scappoose. I am loving being able to bike and walk everywhere and soon plan to master the bus system. And while I may not be ready to look backwards, I love bringing my old life forwards as I construct a new phase of life.

In the next little bit I make three treks to Seattle. First to pick up an award (thank you, Social Justice Fund http://socialjusticefund.org/july-2010-vol-8-issue-6/article408) then to attend a multi- day research symposium on Ovarian Cancer, and then return for my long awaited second opinion.

Being off chemo is wonderful. I even have a cap of fresh hair sprouting. Since the blond whisps of hair on the pale scalp stay hard to see, I am fast to grab people’s hands and make them feel that yes, I have hair! Strangers beware.

I feel fine most of the time. I wish I were less bloated with fewer gastro-intestinal upsets and the surgical spots rebelled less when I am active, but nothing really limits me. I am so grateful for the pink flowers that just popped out on our camellia bush on the 20th of October, and the blue sky and the surprise packages that arrive in the mail. I love having the time to enjoy life. I feel very much alive.

And that brings me to you. Statistically, I should die in the next five years but I am hopeful for my own story being extended. Why? Community and love – even studies show how community and love changes dire outcomes. And I feel the love and live the community and it makes me feel ready for whatever happens today or tomorrow. Thank you making that so potent.

Much love, marcy

Journey With Cancer – The First Hello

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Journey With Cancer – The First Hello
Written 45 days after diagnosis (June 2010) and my first formal communication to friends and supporters. Adapted for broader readership in 2012.

April 20th, 2010 at 6 pm, I park on the side of an Oregon highway waiting for a return call from a doctor. It is gray. I learn that I have “advanced cancer” in a brief call. 36 hours later that diagnosis is refined to Stage IV Ovarian Cancer. There is no Stage V.

In the diagnostic roller coaster leading up to this call I have bartered endlessly, assuring myself of how accepting I could be of any diagnosis but cancer. Congestive heart failure, sure. Rheumatoid arthritis, easy. A fungal infection with a 25% risk of death, absolutely. I share my bargaining chits during various emergency consults where anonymous healers attempt to figure out why the lung of a healthy fit woman has collapsed. My negotiations fail to amuse a single doctor.

April 22, 2010: it is Earth Day and two days after that initial call. It’s also day three of the oil gusher in the Gulf; it’s the day my dearly departed little brother would have turned 43; and it is the day I am handed my formal death sentence. Any show of control collapses. I have drawn the shortest straw in my diagnostic bundle. My life as I had constructed it comes to a close. Crash, boom! Any illusion of free will has been replaced by the will to live.

It is 45 days later now. I have been coming to terms with my short straw. I see my job as using acceptance to construct a new life, however brief. In recent weeks I try on many faces including wise, gracious, funny and sad but I am never as genuinely sad as when I walk out of my Ovarian Cancer Support Group meetings. It is then I feel in the deepest pit of my stomach the very imminent reality of my death. God damn.

Feeling my death is so raw, unlike anything I have felt before. Thinking about my death stays a mere exercise of intellect – it is a removed and obvious truth that I can surely handle. Feeling death is so incredibly sloppy. Slow tears trickle out as I move towards a very different type of acceptance and grief. There is nothing for me to give permission to in this experience. Death is coming for me and it could be coming fast. In allowing myself to feel the reality of death, my stomach lurches endlessly, radiating out in cold, sharp spasms. It is as though I’m enduring a constant replay of the dream-fall when sleeping – the one where the stomach lurches and you are shocked awake at just the point you realize you will hit bottom. But this is real and there is no dream to awaken from. This is a Stage IV Ovarian Cancer diagnosis when you have suspended thinking and grasped Truth.

I am re-born in this free fall. I am re-born to the council of my medical team – “You must start living as if the next three months are your last. And when you are still alive at the close, make a new three month plan.” This is living with Stage IV Ovarian Cancer. It is a sneaky diagnosis that will allow me to look and feel great as the cancer makes its own decisions on longevity. It will decide which three months are my last. We will all find out together as the final three months dawn.

I believe I can do this. I will learn to live in three-month intervals. I will hope and dream and build in smaller allocations of time. But am I going to do this in my heart or in my head? In my head it is a mere storyline I can make interesting, wise and abstract. In my heart it is a constant tremor radiating from my stomach as I fall to my death several times a day or maybe several times an hour. I am offered drugs to derail the anxiety as I fall, but what do I lose if I take the edge off? And, if I don’t take the edge off, how will I get anything done or feel any joy or feel anything other than desperation?

45 days in to my new reality and I am bald. My signature long blond hair is gone. Catching a glance in a mirror is jarring, demoralizing. Why this overt humiliation now?

My house is also sick. It has been diagnosed with mold and so I am barred from entering because mold could kill me – an irony I try not to dwell on. My living quarters are reduced to a single room generously loaned by dear friends as they shower me with love, laughter and attention. My middle class American life has been whittled down to what will fit in a few bins. The bins taunt me with lessons of detachment. Must everything now be about preparing me to leave this world?

I have started to vanish. I can sense colleagues and friends, overwhelmed with the demands of their own lives, cutting me out of the day-to-day flow of work-based communication, so as “not to derail me from healing”. I crave updates about everything that formerly was my life. It’s been a mere 45 days and my erasure from the news of the day is underway. Does no one else see the irony of not distracting me from getting well? So many ironies at Stage IV.

There is so much more to acknowledge, like the bundles of love sent my way through cards, notes in the virtual guestbook, food and good reading material. As I free fall, kindness envelops me and cushions such a scary moment with light and possibilities. As we all struggle to find our best place in this very real drama please don’t fear making mistakes. Cancer is a mistake. Reaching out to me will never be a mistake.

I am lonely and scared. I am like a little Who from Horton Hears a Who — hanging on a thistle screaming out, “I am here, I am here, I am here.” Please hear me, love me and help me live this last phase of life as completely as possible. Just don’t rush my disappearance. Please.

Marcy Westerling
Oregon • June 10, 2010

I’m a kickass community organizer dedicated to the notion that small town Americana is filled with justice seeking souls that deserve support as well as have the power to bridge the false cultural divides of our times.
– Marcy Westerling