Tag Archives: Stage IV Ovarian Cancer

Cone of Happiness

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It is with great relief and gratitude that I close out a year of arduous and, possibly, effective treatment treks from Oregon to Philadelphia for my recurrent stage iv ovarian cancer.

Cone of Happiness

Cone of Happiness

I first arrived at UPenn’s Perelman Center for Advanced Medicine on April 4th, 2013. It had taken me twenty months to qualify for this tentative visit. Paperwork was signed on May 8th, Aphereisis #1 completed on May 22nd with my starting round of treatment June 5th and 6th of 2013. On March 12th and 13th 2014 I completed my 15th trek to Philly and my 11th round of treatment not knowing it would be my last. But it looks like that was my closing treatments for the part one of this clinical trial! Wow!

It’s been a complicated month since I lowered the Cone of Silence. It is never easy to interpret test results without the hands-on experts leading you and my great UPenn doc was gone until April 10th. The Internet told me a pericardial effusion was a bad sign. On April 17th, my doc could finally advise me from looking at the actual scans that the size of my effusion, a mere 1-2 cm of fluid around the heart, was not a concern. (Another probable side effect of Avistan.)

While waiting to understand my March test results, my body was increasingly crashing from the burdens of Avistan, a drug I knew I was set to go off, which tempered my complaints. What I did not expect was on April 10th UPenn offered that in lieu of dropping Avistan, they would give me a month off of treatment and add a day to my next proposed treatment cycle to determine if they could administer the Avistan. My heart dropped a little. I wasn’t sure I was up for more travel and more Avistan but I did not want to be cavalier about stopping participation in this trial given all that it has meant for extending my life.

Luckily, I had an appointment with my Oregon oncologist scheduled for the next day – my first visit to OHSU (Oregon Health Sciences University) in a year! As I biked to OHSU the next morning I found tears of joy on my face – it was wonderful to be enjoying a commute to my medical world. Entering OHSU-land (the largest employer in the city of Portland) I was awed by how affirming I find this community. I park my bike with hundreds of others. I get my free ticket for a jolly tram that arrives like a descending sculpture over my head and takes me to the top of the hill as if on an adventure versus a medical treadmill. It’s Tulip Sales Day so bright colored blooms are being sold for five dollars to support some good cause. My appointment is in the women’s center, which offers huge windows, a play area for children and adults on a wrap around balcony outside, all taking in the awesome view of mountains. Every moment at OSHU gentles the medical woes with positive possibilities. It is not so bad being sick amid a culture dedicated to hope and zest. Oh, I wanted to come home for treatment.

My appointment started early and my lovely, calm Doctor arrived with all my recent test results and said, “Wow, aren’t you doing great!” I explain that I have four vaccines left and she asserted before I have even biased her answer, “No, I think you are done. I think you have chosen a resolute and courageous path. You have gotten a lot of benefit and you will probably get no more.” I could have jumped in her lap and wept. Instead I listed my medical woes and she decisively attributed them all to Avistan, a drug she also believes in and dispenses often. But my body needs a break.

I await my two great docs deciding what is the proposed treatment plan for me here in Oregon. It is now my body’s turn to prove what it has learned from the Part One Autologous OC-DC Vaccines. I intend to cheer on my rebooted immune system in tracking down and eliminating new ovarian cancer cells. Or I may recur and get in line for a return to UPenn for the Part Two T Cell Infusion. I am fortunate to count down to either option.

May we build a world where all diseased people find they have positive options for getting diagnosed, finding treatment options and not being burdened with a payment plan. Thanks to this clinical trial, I might have a bit more time to contribute to that effort! Let’s add that to my to do list. much love, marcy

New To Do List

New To Do List

Living a Life With and Beyond Cancer

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Who are we? When we get the cancer diagnosis, cancer and the urge to survive dominate our lives. Depending on the stage of diagnosis, it happens at different levels. Stage 1 and 2 folks seem to learn to tip toe through their normal lives with cancer carried along as a silent companion slipped into pockets of existing pants, jackets and bags. Stage 3 and 4 folks, well, our cancer seems to barely fit in an oversized tote bag making our old scramble through life clearly marred with this weight. We put it down but there it sits, waiting for us to pick it back up because, sigh, it is our burden to carry. It is heavy. It is awkward. It often makes it into a room before we do – like a nine-month pregnant woman’s belly except we arrive to silence and discomfort.

The other day on facebook I found a post that delighted me. A woman I know only virtually and through cancer advocacy (we both have advanced, recurrent ovarian cancer and worked hard to expose the drug shortages and get doxil back in use) had found me mentioned in an article in Yes! Magazine. It was the former Marcy, the community organizer Marcy, the Marcy who loved her life.

And I loved having my worlds meet. Yes, I have terminal cancer. And yes, I have a life. I am still trying to make the world a better place even if the hours I can dedicate to it are lessened by treatments and being in my closing phase of life.

And if you want to meet the Marcy who is a community organizer (and has terminal cancer) please read this article A Caring Economy Requires Building Bridges—Not Burning Them – Traditional organizing makes opponents into “enemies,” but a new crop of activists is using love and empathy to create new alliances and possibilities.

http://www.yesmagazine.org/issues/love-and-the-apocalypse/labor2019s-new-love-building-a-caring-economy-involves-radical-acts-of-empathy-from-both-sides

I can accept and love my current life the most when it accommodates all of me.#66 Cover

The Philly Chronicles – a start

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

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

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

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

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

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

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

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

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

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

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

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

much love, marcy

MAY 9, 2013

Living With Cancer: Good News Soup

By SUSAN GUBAR

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Expiration Date: an essay on Livingly Dying

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Technically, this last year was a tough year but, in fact, a year ago I was six months into failing chemo after chemo to handle my first recurrence. My options were not looking great as I penned an essay Expiration Date that I cut and paste below. (Please feel welcome to share.)

Diagnosed with cancer after a collapsed lung, my statistical odds were a 10% chance of living beyond two years.
This past year we fought for and got surgery to remove my largest tumors, found a chemo regime that worked and we keep fingers crossed that my cancer will stay stable until I sign paperwork for entry into the clinical trial May 8th. Today I enter my fourth year with this cancer. Most of the time I am in treatment and always awaiting new blood work to reveal which direction the cancer is moving. There are few opportunities to feel confident.

Not every day is a great day but almost every day has great moments. Just like for many of you, I suspect.
They say tomorrow kicks off a string of sunny days – what more could I want. Well, stable blood test results would be very, very nice as well.  xoxo

Expiration Date: an essay on Livingly Dying

I was once known for buying deals on almost-expired meat. However, I didn’t limit myself to expired meat but that behavior earned me top notoriety in my friendship circle. Taking expiration dates too seriously was never my thing. Expired cold meds even seemed to offer an occasional high – who knew?!

These days I am grateful for my common sense attitude toward dates as I stare down the ultimate expiration date – my own. One month into my 51st year I was given a 10% chance of being alive in two years.

People say funny things as they attempt to comfort the terminally ill while managing their own fears.  One common statement reassures that, “We are all terminally ill.  You just know it”. “Harrumph,” I think. I do know. I more than know it as my weary veins dodge yet another dose of toxic poison infused with the knowledge that it will bring me to my knees with exhaustion, nausea, brain fog. Slight consolation is the hope it will keep me alive awhile longer.

When first diagnosed on April 22, 2010 the doctors made every effort to be factual but tactical.  Incurable and metastasized were mentioned, but not terminal, not palliative care. Yet every appointment from then on seemed to include the statement, “You will die from this disease.” It was like a boot camp mantra – getting me used to my new normal. I was in shock but I could still rebel at that edict. “How dare they,” I fumed. But then one day I realized the only way to avoid dying of this disease was to have some other tragedy end my life. What kind of victory would that be? Would my oncology team really be impressed that I managed to get run over just to avoid suffocation by cancer?  I finally accepted I would not die of old age, but from ovarian cancer. 

I have learned a lot about advanced ovarian cancer. It is recurrent, relentless and fast to adapt to any chemotherapy sent its way. Ovarian cancer is not a particularly painful cancer. I like to note, “my people die looking good.” We tend to move in and out of treatment, giving us some much valued recovery time, which is further boosted by steroids when in treatment. It seems wrong to call our form of cancer a wasting disease. One day the doctor will simply inform me the cancer has outwitted all the chemo types available, and treatment will end. I will then enter hospice and die soon thereafter – looking pretty much like I always have albeit possibly bald and ten pounds heavier courtesy of those steroids. I claim the ovarian cancer sisterhood as my people now, because they teach me how to live and die by example. It is a tough group of women constantly being whittled down with funerals and then expanded as the newly diagnosed walk in.

I stand on a particular type of death row. I have been sentenced, but some vague appeal process offers me the possibility of being an outlier – one of the few who survive for over a decade despite the dire odds. No one knows why. Unlike an actual death row inmate who is confined in every aspect of living, I have freedom of movement, tethered mainly by treatment timelines, financial realities and other choices. What I am denied is the freedom to assume I will be alive three months hence. What started as an insurmountable burden I am learning to accommodate. I move from solitary confinement, to a shared cell and then to a mere ankle bracelet with frequent calls from my parole officer.  It is inconvenient but not intolerable.

For me, I cannot live without hope. When I think of my death as truly imminent I feel a grief that I now see as pointless – I just don’t have the time for such sadness. I choose to save those tears for when I am told it is time to contact hospice and then I will move into that final phase of acceptance.  My current mandate is to live with the shadow of death seated comfortably on one shoulder – I rarely forget but I often dismiss my new companion. Parameters are drawn.

Prioritizing hope does not require me to feel optimistic. I am especially clear eyed right now as I endure my first recurrence too soon for it to be a positive indicator. Worse yet, my cancer has only grown after eight months of renewed treatment on multiple chemos. (Please note: one year later, April of 2013, I am closing out a new chemo regimen that seems to have moved me towards remission as well as entry into a cutting edge clinical trial.)

I have made a certain peace with leaving this world, a comfort experienced only after considering what I might do, where I might be, what I might become after I die. What’s the harm in daydreaming my possible death future? The worst that can happen is that I am wrong. I live in a culture that offers few possibilities around what dying means to the person who has died – it is either viewed as THE END (with many finding spiritual solace in turning into humus for the ages), or viewed in mythic versions of heaven and hell. Neither option works for me.  

Weeks after my diagnosis I sat in the Spring sunshine by a burbling creek at our homestead. My sweetie was doing the chores that I was barred from doing post surgery.  This was a favorite resting spot of mine. The chickens made their comforting sounds in their enclosure to my right while the more rambunctious ducks blurted out their loud, harsh and comical sounds in the pasture to the left.  The garden emerged behind me. I was surrounded by so much that I loved. The warmth of the sun reached every nook of my body. The tears I cried were happy ones. Why could this not be my heaven? Why couldn’t I decide that here I would reside, barred from engagement with my former world, but observing it more happily than not? I make the choice to imagine my next world much as Peter Pan declared, “To die will be an awfully big adventure,” even if he imagines his death more boisterously than I do mine.

I have heard of stoic, terminally ill people who chose not to burden others with their diagnosis. I have yet to meet these people. Others allegedly fear being defined by their illness. My response to the diagnosis of terminal cancer was to count down until the first remission allowed me to get a large tattoo on my wrist declaring me a Cancer Warrior with the script positioned for any newcomer to read. Every bag I carry sports a button stating, “Cancer Sucks”. I dare the world to ignore my diagnosis just as I defy any attempt to limit me to my diagnosis. I bike everywhere, slowly to accommodate the damaged body, wishing for a banner across my back to allow those swiftly passing me to know that I am biking despite cancer in my chest, abdomen and pelvis. What a small way to proclaim what it means to live fully with your expiration date. How comforting it might be to the newly diagnosed to have such models. 

Two years in and my closest friends increasingly challenge what they see as my negative self-talk.  I am in palliative care. I have been in palliative care from the beginning. I missed the few curves that could have portended improved outcomes – longer survivability. All success is measured by longer survivability, especially by me. I recurred too fast. The cancer is now ten nodules versus a few which would be possible to grab via surgery. Yes, I think palliative. I hate it but I would hate more missing this closing phase of life by pretending things were different. 

Deep inside I continue to work on a story line that allows me to live – I fall asleep to the effort, I awake to the possibility.  I pray for a miracle knowing that, really, only a miracle can save me now.   The deepest part of me still believes I will survive despite my intellectual clarity that advanced ovarian cancer is almost always terminal. I just can’t imagine saying goodbye so young. And then I fret; maybe I did talk myself into recurring so fast.

I get my affairs in order. I avoid paperwork at this phase of life and focus instead on my closure — painting rocks for memorial service party favors to be remembered by, quilting for loved ones, making time for conversations I would rather not have. I have written up a burial plan.

I live on death row in a lovely neighborhood, in a lovely house surrounded by perks that don’t eliminate the sadness of departure.  I hold my pink slip from this world. My life stays filled with joy and meaning as well as a mantle of sadness – the former only enriched by the latter. Years prior I wondered, as do many, would I rather die unexpectedly – poof, be gone? I suspect not. I like to orchestrate. I definitely intend to script this phase of life and be thankful for the opportunity.

Some days resentments push forward. I know how much fun retirement would have been with all my friends. Will I really have to miss the magnificence of the maturing front yard that I’m planting this Spring? Will someone else match my devotion to what I leave behind of my life?

My expiration date has passed. I live. Today is another day on death row. I embrace livingly dying, in the words of the late Christopher Hitchens, and I am grateful for this luck.  

Marcy Westerling – Oregon

written Spring of 2012

Not What I Wanted…New Scan Results

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Well, it’s my 3rd ct scan in a row with lousy news.  I have new cancer growth after 5 months of chemo.  19 chemo doses and the cancer is growing.  It’s enough to give a girl doubts.

So, I will get another port installed asap with great hopes that the surgery works this time because the veins are done.
And then I will start on the imported doxil that I should have gone on 6 months ago were it available.
My bone marrow is very tired but my body continues to function fairly well.  I biked the hour each way to get my dour news.
And my great ‘research’ team abandoned their personal plans for last night to huddle instead over strategies to get my prior clinical trial unblinded and leave me eligible for a new clinical trial out of Pennsylvania.
And that’s enough to give a girl the sliver of hope she needs to keep on keepin’ on.
Enjoy the now because it is real.
xo  marcy
p.s.  The photo attempts to show a work I made at a death and dying workshop last summer.  You may or may not be able to tell that the turtle is literally 1/8th off the work and leaving the lovely nature scene.  I was trying to create the sense of moving forwards, regardless, to inspire me when it all seems a bit much. (Of course, the turtle and I both know that she is headed to an even better beach.)

Two Years and Counting

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Greetings all.  The month between my birthday (March 25th) and Earth Day aka my little brother’s birthday (April 22nd) in 2010 marks the roller-coaster month of being diagnosed.  A month where I went from a 10 mile/day bike commuter to a woman who couldn’t gasp enough air to climb the stairs to her bedroom.  And thus a collapsed lung was diagnosed and weeks later stage iv cancer.  In that month I lost so much that was. Today I biked the hour each way to my 19th dose of chemo.  Next week I have my three month look/see inside.  The last two such check-ins were full of sad news.  I hope this one is as close to dull as possible.  Regardless, life is good.

Below I share a piece I wrote last month after attending a memorial for a younger friend diagnosed 6 months prior to me.
David’s Sendoff

I did not fret the plane’s departure. There were no papers to hang on to, no bags to lug, no crowds to survive. It was just time to go. And then there I was admiring the world above the cloud laden skies of Oregon – a rising red line marked the emerging sun, small eruptions like stepping stones for giants made me smile as I knew the clouds obscured massive mountain bases below. This journey would be just fine regardless of where it took me.

Yesterday at this time I was getting ready for the memorial of a friend. He died at 42 leaving behind a beloved wife and two young children. Cancer ransacked him. Cancer has me as well, metastasized since diagnosis and yet relatively well behaved compared to the sieges David endured in his 2 years. I prepare to close out my second year with cancer, dependent on chemo cocktails and regular cycles of ill days to stay alive, never knowing when the cancer will surge and end the tentative truce I pretend to have with it. I do know that soon I will surpass the prognosis of a 90% chance of being dead within two years. I am not smug. I get the creativity, control and chaos of my dance partner. But I am content.

Where is David now? He never mentioned death as an option as the rest of us counted down the days to his body’s complete retirement. By the end they were pouring chemo directly into his brain. It was always clear to me, his terminal sister on this journey, that his body was being asked to endure too much.

I dreaded the memorial because I had been so sick the days leading up to it due to an allergic response to my latest dose of chemo. I needed a walking stick. I could not afford to leak a tear, as my body was already so dehydrated. Armored with my gals as chaperones, whether to fight off death or any other assault on my system, we arrived in good cheer and stayed there as we got to know David, the husband of our colleague Grace, far better than we had in life.

The church was at capacity with formally attired folks, somber but grounded in the presence of so many children too young to cope with adult displays of grief. Hushed tones and sniffles took the place of keening. The grieving widow seemed more a bride – gorgeous, smiling, cuddling children in their world of play. Lighting funeral candles was fun when enveloped by relatives and attention. “Where is daddy?”, is a question they had asked far too much in the prior two years – the youngest was not yet three. They did not seem to wonder today.

It ended in the best of ways. I understood better why David was so special, why Grace built a life with him, why the crowd was so full and why he and I could be pals in the next world. I am trying to accumulate fun contacts on the other side.

For now my plane flies above the clouds. The sun reveals that another new day without David is fully in process. Everything I see is peaceful and I wonder why it is that I have been taught to fear death.

much love, marcy

Early Detection – Delaying Mortality

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In the world of cancer, a land 1 in 3 people will visit in their life time, the stage at detection determines whether it is a minor nuisance or the close of life. There are only four stages.  I was diagnosed at the fourth stage otherwise known as metastasized, advanced, systemic or end stage cancer.  None of the stage IV descriptors are meant to sound good.  But early detection, now that is good.

February apparently is early detection month – this is my contribution to that effort.  (It is also black history month – African-Americans are disproportionately impacted by cancer in this country mainly due to less access to medical care.)

Ovarian cancer is known as ‘the silent killer’ but most cancer functions silently.  Abnormal cells start growing, are not evicted, create a mass, travel around and at some point they get big enough to create a secondary problem.  Big enough is often too big.  There are over 2000 forms of cancer and trying to be on top of all of them is hard for the best of the oncologists. So how to detect early with out moving towards hypochondria?

While my expertise is limited to my form of cancer, I have found tremendous commonalities exist.  Unless you have a huge tumor grow fast and protrude from your body, usually the easy ones to treat, you are looking for subtle symptoms.  Now let me describe subtle – it is not the discomfort in your big toe or a passing stomachache – subtle here is about persistence.  For ovarian cancer if you have any issue in your abdominal area that you note for 11 days out of a calendar month, well, it’s time to make an appointment.  Those 11 days do not need to be in a row.

Now odds are your doctor will pooh-pooh you especially if you are younger.   I was allowed to leave my first appointment with a lung approaching collapse that was dismissed as bronchitis despite the fact that I felt fine, I just couldn’t breathe.  The aide who checked me out tried to console my wasted visit with a “better safe than sorry” mantra.  The next week I was in the emergency room, barely able to walk, talk let alone breathe leading to an emergency tapping of my chest cavity that removed liters of cancerous fluids.  No, don’t expect your doctor to decide you have an issue.

If you want early detection you are going to have to work for it.  Calendar what you feel, know your family history, push the medical community.  And if it ends up being nothing leave with joy in your heart.  Your job is to check fiercely and then let go.  I had my symptoms for at least six months prior to emergency diagnosis. It is hard to find a photo from that time where I am not holding my stomach.  The discomfort was modest but persistant. Every woman lives with occasional symptoms that make up a gynecological cancer – so the trick is duration not severity.  It is hard knowing that you could have been caught at an earlier, survivable stage.

Testing for cancer is not easy with so many different cancers to be found and defenitive diagnosis requiring surgical probes.  There are simple blood tests but they need to be matched to the cancer being pursued.  And a positive blood test sets off much more intrusive testing.  Doctors have good reason not to seek out cancer casually.  Breast exams are an example of progress but they yield a high percentage of false positives leading to stressful, invasive follow ups.

So then again, you just might want to hope for the best and instead apply early detection to fiscal matters.

I am not known for careful administrative control of my life.  The first time I filed taxes I sent them to the wrong state.  That state was grateful and insisted on keeping them despite the fact that I really owed the amount elsewhere.  This experience may or may not have influenced my conclusion that the less I attended to financial matters the better.  I coped by trying to minimize my exposure – I spent very little.  It served me well in management because I avoided expenses and made checks and balances very, very simple.  I ran organizations from age 23 on and was known for this effective but odd style. This month I got my comeuppance.

When diagnosed, I relocated for easier access to services that can be found in a city in the hopes of prolonging my life.  My small town credit union account became my savings and I opened a new credit union account near to my new home.  My new account handles my bills.  I peer in monthly to conduct business.

Every time I tried to peer in to my old account, though, my password wasn’t accepted or the test questions were too obtuse for me.  What was the name of my last dog?  My dog just died after 16 years – which last dog?  And was it all lower case?  By then I had tried too many times and was locked out.  I could never get in.  Finally I vowed to make it happen, hung on the phone for personal guidance, got into my account and thought ‘holy shit!’  I fast dialed the teller back and said something is very wrong.  In fact, in the last month my account had been blatently hacked – check after check was signed by this dude, Brandon DeWeiss, from his checkbook, with his address in Gresham and his signature. And yet my account was paying for it.  To the tune of thousands of dollars.  The fraud teller assigned me, while very nice, had a changing story of what I was liable for. First it was anything beyond the last 30 days, then it was the far more dire liability for any fraudulent check not caught in the last 24 hours.  So, am I supposed to check my account daily? And when did banks start cashing checks with out looking for any sign of relevancy?  And when did that lax attitude become my problem?  My account is now full restored after a few days of deep stress.

So I guess early detection is a good rule for life. I am not sure that I am the best to guide anyone further along that path, though.

The photo shared here just won an award.  It reminds us that beauty lies everywhere.  In this photo you see ovarian cancer.

The Heart is an Organ of Fire

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I started a tradition 16 years ago now.  Sometimes I explained it by saying, ‘well, I never got my Christmas Cards out so Valentine’s Day became my time’, which is true but not entirely.

The real truth is that 16 years ago there was a human dignity activist that I had worked with for a few years, always enjoying my every interaction with him.  He was a volunteer organizer in the small towns of Forest Grove, Banks, and West Plains where he had lived for the prior 2 decades, building his own cabin in the woods with a family to fill it.  He was passionate about on the ground organizing and had a keen, strategic mind.  He was also terribly cute and kind.  We had fun working together.
Then one day he separated from his wife. We started finding reasons to have one on one meetings to plan a series of economic workshops – we stayed on task but we also never managed to wrap up the project.  After many dinner meetings, Valentine’s Day approached.  Since neither one of us showed tremendous nerve in managing our own desires I came up with a safe way to put my heart out there. It was subtle.
I designed a Valentine’s Day card for all my friends.  I made a linoleum print, carving out the negative space then moving on to the next step of hand printing 200 postcard fronts with a huge heart.  After the days it took for the ink to dry, I then hand addressed all 200 cards.  All so that I could send the one without looking a fool.  I still remember mailing them with a little kiss.  Two days later, Mike and I had our first official date – a winter hike in the coast range that continued past dark.  And, as they say, the rest is history.
After 16 years, you would think I would have a data base and process but each January I re-invent who to mail to after I complete the printing.  This year, I never managed a second run and so only 100 cards went out.  I know how many dear friends are not getting them this year and for no good reason beyond I ran out of steam.  But you are in good company as after that first year Mike never got another card of his own.
Every year I wonder if I will manage to get the cards out.  It takes so much time.  This year the design eluded me.  It has to be simple because of the method.  My design drafts were nice, but the state of my life didn’t match the cuteness factor.  January 18th I got my ct scan results that closed with the dreaded words ‘subtle disease progression noted.’  That night I drew my design, carving it the day after.
“The heart is an organ of fire.”  (A statement I always liked from Michael Ondaatje.)  Barbed wire is all about ominous limitation.  Paper, rock, scissors is a children’s game positing which tool is the strongest in the end.
My love and appreciation to so many as I plod forwards on this journey.  I am still on chemo but drug shifts are around the corner because my body needs a break from ‘the big gun’ of carboplatinum.  This entire cycle has been about delay after delay as my blood counts stay too low for treatment.  It’s a roller-coaster.  A time without chemo is not yet imagined – if the disease gets stable I will stay on some maintenance infusion probably of avistan.
Happy Valentine’s Day because what is the option.
with love, marcy

Back in Chemo-land

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Christopher Hitchens died a few days back from his cancer and while I was mainly neutral on his work, I did develop an affinity for him as we both underwent our dramatic diagnosises with advanced cancer in the Spring of 2010.  He chronicled the strange journey so well that I could relax in my own attempts to describe it.  His initial Vanity Fair column on his cancer became one I referred many a friend to, then and now, for being so spot on.

He describes the original process of calling in emergency help, “…but now that I view the scene in retrospect I see it as a very gentle and firm deportation, taking me from the country of the well across the stark frontier that marks off the land of malady.”

“The new land is quite welcoming in its way. …the humor is a touch feeble and repetitive, there seems to be almost no talk of sex, and the cuisine is the worst of any destination I have ever visited. The country has a language of its own—a lingua franca that manages to be both dull and difficult and that contains names like ondansetron, for anti-nausea medication…

He wryly notes, “In whatever kind of a “race” life may be, I have very abruptly become a finalist. To the dumb question “Why me?” the cosmos barely bothers to return the reply: Why not?”

And then with these closing paragraphs he captures the odd bargains, suffering and causes an advanced cancer patient faces when they know how the story ends and yet vie bizarrely for more time.  “The oncology bargain is that, in return for at least the chance of a few more useful years, you agree to submit to chemotherapy and then, if you are lucky with that, to radiation or even surgery. So here’s the wager: you stick around for a bit, but in return we are going to need some things from you. These things may include your taste buds, your ability to concentrate, your ability to digest, and the hair on your head. This certainly appears to be a reasonable trade. Unfortunately, it also involves confronting one of the most appealing clichés in our language. You’ve heard it all right. People don’t have cancer: they are reported to be battling cancer. No well-wisher omits the combative image: You can beat this. It’s even in obituaries for cancer losers, as if one might reasonably say of someone that they died after a long and brave struggle with mortality. You don’t hear it about long-term sufferers from heart disease or kidney failure.

Myself, I love the imagery of struggle. I sometimes wish I were suffering in a good cause, or risking my life for the good of others, instead of just being a gravely endangered patient. Allow me to inform you, though, that when you sit in a room with a set of other finalists, and kindly people bring a huge transparent bag of poison and plug it into your arm, and you either read or don’t read a book while the venom sack gradually empties itself into your system, the image of the ardent soldier or revolutionary is the very last one that will occur to you. You feel swamped with passivity and impotence: dissolving in powerlessness like a sugar lump in water.”

So Christopher Hitchens publicly ‘lost the battle’ on December 15th 2011, a battle more accurately lost on the day of his diagnosis.

It’s been a long silence from me on the caring bridge site.  And not one of those good silences but one where I have tried to decide what is my mood as I face ‘livingly dyingly’ (again in Hitchens’ words) with suspended despair.  I don’t want to waste my time with sadness but dang, recurring so fast and with the first choice drugs not available, it is hard not to feel a steady drum beat off in the shadows.

But I do apologize for being so lame at getting out an update.  Many days I try but before I can decide what to say I have lost my limited energy.  I could say ‘I am fine’ because basically I am fine for a stage iv ovarian cancer patient in her first recurrence.  I could confess how hard this reentry into chemo land has been; bore you with my medical woes that have seemed endless this round.  But I don’t want to dwell in my pain for a moment longer than I have to.  Soon I have a good day or hour and I am caught up in appreciating those moments.  “How am I?” is a volatile question that I rarely know the answer to.

I have loved these short, dark days of late Fall.  As the solstice approaches to mark the return of light I have mixed feelings.  A marker I have so long relished I now wonder if I am up to.  But I suspect I will be.  This week, a week of relative good health because my chemo was delayed yet again due to low blood counts, I actually started pulling out some projects, making lists, test driving my brain and finding some traction.  With the help of so many of you, I remember to put one foot in front of the other and find that I can get somewhere and that’s not bad.

Mike and I did manage to visit my relatives in Holland prior to starting chemo – a lovely sendoff.  Our other jaunt was to a cancer retreat that reminded me yet again that the patient and primary caregiver face equally huge burdens, so, as always, a huge shout out to my beloved Mike.

lots of love and happy holidays, marcy

Adapting to a (Too) Short 1st Remission

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 Last week was tough.  Too many consults with doctors that crushed our few hopes.  I am inoperable in the abdomen.  I am inoperable in the chest.  I am too high risk for radiation.  Chemo is the only option.  First choice chemo, doxil/caelyx, is available in every other country but ours as big pharma has created a supply line collapse because of unregulated greed.  (I just heard that there are no drugs available to treat TB in this country – that should scare everyone into action.  Government needs to step in.)

It is wrong but it is also my only reality.  I need drugs now.  Cancer doesn’t wait.
My docs did not initially agree on a chemo approach with one wanting to proceed gently (to preserve my marrow for as long as possible) but the other wanting to be as aggressive as possible even if the optimum drugs are not available.  We will go (not that I have felt very consulted) with the most aggressive approach because they believe I am young and fit enough to handle it.  My first infusion will be Monday, November 7th with or without the surgical port installed to make treatment more bearable.  I stay on the waitlist for the top choice chemo but no one expects availability of that this year.
Mike and I leave for a 2 week visit to family in Holland that starts later this week.  It’s all about making the most of the now.  And in that spirit I must stop typing, get on my bike for the 10 mile trek to my fitness class for cancer warriors, then to my clinic for acupuncture and then for my first session of spiritual counseling.
much love,marcy

Sometimes there is a Shorter Straw Yet

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I suspected I was reoccurring when my numbers did a jump from 13 to 20 in August but expected it would stay microscopic for awhile longer. But with my ca 125 at a mere 30 right now, I have visible cancer in lung and abdomen.  In fact, we now know that it was there in July but interpreting scans is a tough art.  So I now have recurrent metastasized epithelial ovarian cancer probably platinum resistant. Still stage iv and still grade 3 – the worst in all categories now. An odd accomplishment.

I am very fit and eat well. My 2nd opinion doc had me add in weights so I feel ready for the onslaught. But I am sad. (Especially about loosing my hair again.  And dont even dare utter some lame positive spin cos there is nothing positive about being made bald by drugs to me.  Especially when it does not even cure you.)

We are looking at radiation and surgery but chemo stays top starting priority.  (Interesting note, my friends did an international search for doxil and found it everywhere but this country, even Canada despite their stories of being impacted. So I am more confused then ever by our supply lines crisis.)  I am on a wait list for the drugs to be available.  If we can’t get them I relocate countries or take next best option – I would probably do the latter. We meet with surgeon on Monday to assess what we can cut out.

It’s bad but it was bad at diagnosis.  I started with a 10% chance of being alive in 2 years.  We just do what we can.  As my oncologist likes to note, it’s in god’s hands.  Right now I tend to agree.  But I am operational today and so off to Occupy Portland because Big Pharma + Wall Street = No Drugs and so much more.
Thanks for lighting candles that hold Mike and me in your thoughts.  I think we need them.  love, marcyt.wqskkOZUjdbgeDmx

Remember Act Up?

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Greetings all.  I hope you are enjoying the appearance of red in the leaves and the chill in the air. This has been a tougher time for Mike and me as we wait for the look-see October 5th to confirm a likely re-occurence far too soon to bode well.  So now I get to both research best options and fight for those drugs to be available.  In the meantime, Mike’s brother and a great support to him is facing his own rapid decline as he was formally diagnosed with ALS the same day that my ca 125 jumped in August. What a happy little Oregon team we are. (Actually, we are fine.  Just raw as well.)

I share this post from a fellow warrior that I have met on this journey. I am the organizing match for her great writing and research skills.  Do not go gentle into that good night, indeed.
I can accept an early death.  I will not accept assistance with that by big pharma and congress.  Act Up demanded a better medical process for AIDS and they got it*.  But not before they fought and died creatively and constantly to get equitable treatment. I can’t fight for a miracle (although I do hope quite a bit) but I can and will fight till the end for the effective drugs tostay available.    And if I am going to die, I will die in front of their corporate headquarters or congress.  This is wrong in a sea of too many wrongs.
xo marcy
*Treatment of AIDS now stands impacted as well by these massive international drug shortages.

A blog about my interaction with ovarian cancer.

SUNDAY, SEPTEMBER 25, 2011

More about Drug Shortages- Get Out Those Scarves and Teal Arm Bands

What if the government and private donations pumped money into the development of drugs to treat a deadly cancer but suddenly when distribution of the drugs became unprofitable the companies making them stopped production.  What happens to the war on cancer then?  Should we just accept that in a capitalist economy, profits determine who lives and who dies?

I have written in other posts that it appears to me that the current chemo shortages are disproportionately affecting ovarian cancer, which is primarily an older woman’s disease. I was please to find this American Cancer Society article that confirms my position. Unfortunately the article skews the discussion a bit about what has caused the shortages by also quoting  a large pharmaceutal distributor (McKesson) saying essentially it’s all the FDA’s fault.  The spokesperson claims that FDA’s increased scrutiny on manufacturing processes and quality control have made certain drugs too low in profits to sustain production of those drugs.  The article further states,”McKesson’s Chief Medical Officer Dr. Roy Beveridge, MD, says there is no economic incentive for manufacturers to make or distribute low-priced generic drugs, and that unless the baseline system changes, shortages are going to continue.”

J&J Headquarters designed by IM Pei

Ben Venue Labs, the manufacturer of Doxil, a critical treatment for recurrent ovarian cancer, for a subsidiary of Johnson & Johnson, claims that the problem is not one profit. An 9/22/11 article in courier-journal.com by Laura Ungar states:
Jason Kurtz, spokesman for the Ohio-based third-party maker, Ben Venue Laboratories, would only say “we’re facing capacity constraints” with a drug that is complex to make. He wouldn’t specify what type of constraints, but said examples of such problems include unplanned downtime because of machinery breakdowns and capital-improvement projects that limit manufacturing capacity.

However, Ben Venue Labs wants out of the Doxil business (and other contract manufacturing) to focus more on its business as Bedford Labs, a producer of generic injectables, and avoid all the problems that have caused bans from Canada and Europe of Ben Venue products.  Like the WSJ said, it is all about manufacturing priorities. In the meantime, as Bedford Labs, the company has discontinued cisplatin and carboplatinand has significant shortages in production of Taxol. It appears to focus on commonly needed and presumably more profitable drugs such as those that treat migraine (generic Imitrix), indigestion (generic Zantac) and high blood pressure (generic Inderol).

With Ben Venue moving on to greener pastures, who will J&J find to manufacture Doxil and how hard will they try? Doxil reportedly represents less than 1% of Johnson & Johnson revenues.  A few of my ovarian cancer sisters on inspire.com bulletin board noted that J&J makes a lot of money marketing to women, and in particular in women’s products.   Here’s one list of products that J& J sells.  Perhaps J&J needs to be reminded that they need to focus on Doxil as well, and quickly.

In addition,  there are all the generic drug companies that have discontinued or have serious shortage in chemo drugs  ovarian cancer patients need. For Taxol, they areAPP, Bedford, Hospira, Sandoz and Teva.  For carboplatin, they are APP, Bedford, Sandoz and Teva.  For cisplatin, they are APP, Bedford and Teva.  And with Bedford, now out of the ovarian chemo business for the most part, more of the market power will consolidate in the handful of generic companies left, who will continue to make “allocation decisions” of their manufacturing capacity based on profit.

What can we do? Big Pharma would have us believe that the causes are all very complicated–increased reliance on outsourced ingredients, Medicare price controls, increased demand from all those pesky cancer patients, complicated manufacturing processes and lack of inspection capacity from the FDA.  But we all know that it boils down to making sure that Big Pharma makes maximum profit, even when lives are at stake.  This is unacceptable in a civilized society.

In my previous posts, I have encouraged people to write to Congress.  A hearing was held on Friday September 23, 2011 in the House Energy and Commerce subcommittee on Health but the human voice of the affected cancer patient was sorely missing. We can continue to try to get our government to take some action in this area which they have been loath to regulate thus far.  Or we can take our message to the streets and protest at the offices of the companies who will not manufacture the drugs we need.  We could show up at J&J corporate offices (and the generic companies too) wearing scarves and teal arm bands, with our message that we are still here, we are still fighting and they have an obligation to get us the drugs that will keep us alive.  Who’s up for a road trip to New Brunswick, New Jersey?  by Maggie Heim

Marcy will be there.

Holding My Breathe

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A cancer friend wrote the below too well for me to do more than share…I wont have news about my own rise in numbers and likely reoccurrence until retested in mid September but I was struck cold by this recent quote in the Oregonian.  

“Dr. Samuel Taylor, an oncologist with Celilo Cancer Center in The Dalles, OR says his group has rationed leucovorin. Colon cancer patients considered curable receive full doses. Patients considered terminal, but who could have years to live with full treatment, instead receive a partial dose, he says.”  ouch.  
 
At least I now have my “Cancer Warrior” tattoo on my wrist, see photo, to remind me to move forwards and enjoy each day. 
 
Do your part and spread the word – you’ll be fighting corporate greed and globalization while promoting the need for effective government.  And helping me and so many others avoid corporate death panels.  thanks.  
 
xo marcy
Critics of health care reform warned the government would set up “death panels” if the law was enacted.  That hasn’t happened, but such panels do exist, thanks to the actions of Big Pharma. Today pharmaceutical companies are choosing who will live and die when they decide not to manufacture drugs needed by cancer patients – like me – who are at risk of premature death.

There is a nationwide shortage of Doxil, a chemotherapy drug used to treat recurrent ovarian cancer, among other cancers. I learned about the shortage from my oncologist in July when he said that the best treatment for me was Doxil in combination with carboplatinum for my now recurrent ovarian cancer, but I would have to start without Doxil.  New supplies were not expected until mid or late August.

The drug is distributed by Janssen Products, LP, a Johnson & Johnson company, and manufactured by Ben Venue Laboratories in Bedford, Ohio, a unit of Boehringer Ingelheim GmbH of Germany. Ben Venue’s representative explained that the company is facing “manufacturing capacity constraints” that have held up some products, and it is working diligently to prioritize and expedite manufacturing for current orders.” (WSJ 7/21/11)  I wonder if  the priorities are set because of the lower financial return Doxil brings or the fact that it is a woman’s disease that Doxil mostly treats.

I learned from an online board that women around the country were scrambling to places remote from their regular treatment centers to get the precious Doxil before it runs out.  One woman said a small supply was available in Texas; another thought some could be had in Boston. It turns out that by early August, none was available in the United States.  One person has gone to Paris to finish her Doxil treatment.

Shockingly, Doxil is only one of many drugs in shortage in the United States.  Three other mainline chemotherapies for ovarian cancer, carboplatinum, cis-platin and taxol, as well as chemotherapy drugs for breast and colorectal cancer, are in short supply.  I learned from a new friend online that her clinic in Los Angeles has run out of taxol. Luckily, I get my infusions at Cedars Sinai Medical Center, which still
has a supply of these three drugs even though it does not have Doxil.

On August 18, 2011, Janssen issued its latest update on the Doxil shortage.  It announced that it had implemented its “new allocation process for a modest and limited supply of DOXIL®” and apparently all available Doxil has been distributed to certain patients whose physicians certified in writing that the patients were already on Doxil. There is now a waiting list that will be fulfilled as new supply eventually becomes available.  However, Janssen cautioned,   “As supply will remain intermittent in the coming months, Janssen Products, LP continues to recommend that no new patients be started on DOXIL®.”

So, the original announcement that Doxil would be available again by late August proved to be inaccurate.  Doxil is available again only for special limited cases, which unfortunately do not include me because I have not yet started treatment with Doxil.

According to the American Society of Health System Pharmacists, drug shortages currently affect about 200 medications in the United States, including antibiotics. The FDA reports record shortages for 2010 and projects more record shortages for 2011.  But the FDA has no power to require drug manufacturers to explain why there are shortages and effectively must beg the manufacturers to keep it informed.

The only real reason for these shortages is the economics for Big Pharma., which makes more money from new drugs, antidepressants and potency pills than generic chemotherapy drugs.  Why make drugs for which you can only charge $3.00 per dose when you can force doctors because of shortages to prescribe new medications that cost $10,000 per dose.?

This all means I could go for an indeterminate time not getting the drug that my oncologist says best increases my odds for remission.  I am starting to feel the need to scramble myself.  For this grandmother,
the “allocation system” of who gets Doxil (and possibly the other drugs with shortages used to treat ovarian cancer) has made the drug companies the real death panels.

Senator Klobucher introduced S. 296, Preserving Access to Life-Saving Medications Act, which would require manufacturers to report shortages and reasons for the shortages to the FDA. A similar bill, HR 2245, has been introduced in the House. Both bills are still in committee.

While I support this legislation, it is unfortunately merely a band-aid over a gaping wound.  Drug companies need to become more accountable for their profit driven decisions about what drugs to produce.  My fellow cancer warriors and I cannot fight the good fight if the drugs aren’t even available.  Maggie Heim – Help Keep a Sister Alive http://helpkeepasisteralive.blogspot.com/tattoo

Moving Out of Remission and into the Battle for Drugs

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How is Marcy? I suppose you wonder given that I haven’t been very chatty of late. (And some of you ask, which I appreciate.) My effort at an extended cancer vacation has been fun. Now to e-x-t-e-n-d it. In almost each individual moment, though, I am pretty darn good.

In the bigger sense e.g. how is my health?, I stay holding my breath from one monthly lab test to the next. The week of the test is always hard as is the week after if the result is not stable. My numbers continue to rise which is a bad trend. My September labs could be the deal breaker. Right now I am spending my entire disability check plus to complete all possible dental care in the hopes that that will disappear any secondary infection which might be raising my numbers. (Please, please, please!) When the dental care fails to entertain me, I move on to creating political pressure to open the supply lines for the chemo that my life depends on. Since you can help with this task I add my current draft of a letter to the editor. Please share:

“What’s worse then needing a course of chemotherapy to stay alive? Needing those drugs but finding out that there is an intentional shortage of them. Many people now face this reality. I fear I will soon be one of them. Now is not a good time to have your life depend on specialized drugs.

Critical drugs are no longer being made. The Medicare Prescription Drug, Improvement and Modernization Act of 2003 capped profits at 6%. “The low profit margins mean that manufacturers face a hard choice: lose money producing a lifesaving drug or switch limited production capacity to a more lucrative drug,” states Ezekiel J. Emanual in his front page opinion piece in the August 7, 2001 Sunday New York Times. http://www.nytimes.com/2011/08/07/opinion/sunday/ezekiel-emanuel-cancer-pat ients.html?_r=1&ref=opinion
And big pharmaceutical companies need big profits. The average health care Chief Executive Officer (CEO) earned $10.5 million in 2009. That is a lot of additional income to generate.

And so I watch my monthly blood-work indicate that I may well be coming out of my very short remission. I have Stage IV Ovarian Cancer – a terminal diagnosis that can be prolonged with the right drugs. Those drugs are all in short supply.

This is not a research problem, this is a political problem. Government exists to protect the people. Government needs to intervene with consequences for the corporations and some doctors that are putting profit ahead of health. To take proven, needed and irreplaceable drugs out of production should not be legal. If you agree, spread the word about this problem and then tell your congressional team (https://writerep.house.gov/writerep/welcome.shtml) that it is their job to fix it. You never know when your life will depend on it.”

warmly, Marcy Westerling