Living a Life With and Beyond Cancer

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.

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Not What I Wanted…New Scan Results

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.)

Adapting to a (Too) Short 1st Remission

 

 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

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, marcy

Remember Act Up?

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.

Help Keep a Sister Alive

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

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/

Moving Out of Remission and into the Battle for Drugs

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