Plodding Along

For weeks and longer I have tried to draft an update that serves the purpose of sharing information. I have started many. They all languish for tone. They sound woeful and yet I write during a positive moment – I might be getting a second remission. Another remission was not very likely given this last 17 months of treatment failures. Remission does sound great. It is also hard to see it as more than a short break between treatment. My body and I are very, very tired of constant treatment so a break is not to be sneered at. My body and I are also tired of the constant suspense. Between bi-monthly blood tests and the ongoing lurching steps towards the UPenn trial, what happens next hides behind curtains that I do not get to chose.

I should be shouting out good news but really I am calculating the best way to get through the day. What are the top three side effects that I must fixate on tempering? I won’t list the options.

My orientation is towards planning, micro-planning perhaps. I have adapted to many aspects of my new terrain, this staring at mortality, but I find living with imminent death somewhere between the biggest uncertainty and a reality far too certain. It sucks for planning around. So then I fixate on the established treatment schedule, trivializing the point of treatment by feeling entitled to dates being met when in fact disease stability is the only real goal (and then extending and extending that stability). Of course my treatment plan changes to match my needs. But I hate how it ruins my carefully re-calculated plans again!

Friends, ever-loyal-beyond-belief friends, take over the planning details so that I have less reason to obsess. I focus on adapting to the new truths. I can’t tell you how many times my graduation date from this chemo regimen has changed. Most recently, after a tough week of accumulating side effects it seems that I might not go additional ‘extra’ rounds of this regimen but that wont be determined until March 28th, the same date as I am schedule for another chemo round – whatever. I will arrive packed for the decision we make.

Most of the time I just wonder as I live a life of such low bars. My days are a sequence of very, very small triumphs. And it is so many months now of trying to fashion this into a life.

I mange to get to weekly chemo, fast for 36 hours around each infusion, make it to my acupuncture appointments twice per week, exercise daily and not much more. I have idle hours. I sit and play at the iPad, read and think of the next tiny task I will attempt – maybe it’s sweep one floor or gather laundry. It is never as complicated as ‘do laundry’ because that is now a concept that needs to get broken in to component parts often over days.

I have mentioned my determination that 2013 would be the year I focused on living and returning to my old passions. And I have. It has exhausted me. It also derailed the writing projects I started. This girl-living-on- chemo seems only able to mange so much. Mike and I did attend the first national Anti-Fracking Summit in Texas in early March. The passion and determination in the room were fantastic as was our session on rural organizing. I continue to advise some of these new contacts as they work on the ground in rural america. Texas was great and yet how hard for me. I got sick and it highlighted the reality of being disabled in a fast moving world. One terminal friend inquired, “Is it too much, these attempts at being part of your old life?” Maybe, and it makes me sad.

I limp around an intersection between malaise and treatment-induced-exhaustion. It is a quiet place, fraught with intentions not to be realized any time soon. My forays just prove the point. But despite my disappointments at how hard a front line role in organizing stays for me restricted to cancerland, behind the scenes I continue to advise and be valued and I am grateful for this role.

The UPenn update is despite their ongoing delays, Holly and I are showing up on April 4th for a pre-screening since the actually screening can’t happen until their vaccine making building setup is expanded. Hopefully, my real screening will happen May 8th with the final vaccine making step taking place on May 22nd when they pull out and return my white blood cells to combine with the rest of the materials they have been prepping from my tumor removed back in October 2012. If those dates happen, I would receive the vaccine three weeks later – a date carefully calibrated to be within a window as well as on a day when only one other woman in the the trial gets her vaccine, since the FDA won’t allow more then two women to be treated a day during this highly experimental phase. Each injection needs to be timed for when a radiologist can use equipment to guide the vaccine to the selected groin lymph node.

This is not how I wanted to spend my summer, in planes travelling to and fro. Marcy the planner, had mapped this out quite well to be a winter activity. My entire adult life had been about building the life I wanted. And I did. This cancer phase is about enduring little control and still figuring out how to thrive. (Grrrrr….) And remember up until my formal screening, I can be disqualified for a roster of possibilities.

And ergo the party. What better time for a party then as a counterweight to my 3rd cancerversary – a time of reflection on the losses, new reality and being alive still. Spring is swelling around us. The passage into this new season assures we are all still here – living and building the best life we can. It is good, wonderful quite often, and yes, hard for all of us as well. A party is a chance to pause with the positive. Attending a dance party doesn’t mean YOU need to dance but that you will be in a room pulsing with the beats of life and a live dj that knows how to get your toes tapping from whatever corner you find yourself. Good food, good people. Me celebrating a birthday that, alas, is a triumph to realize. Yes, a party is a good thing. I very much hope to see you there.

Come Join Us!

Marcy’s (Birthday) Dance Party – live DJ

Saturday, March 30th, 2013 

7:30-10:30 pm

“Joy is the simplest form of gratitude.” ~ Karl Barth

Join together in gratitude for Marcy’s 54th birthday and the community that sustains us all.

No gifts beyond your presence.

warmly, marcy

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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

Life in First Remission

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