Tag Archives: terminal cancer

Finding Peace on the Tightrope

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It’s been a quiet week on Harold Street. I re-started standard of care chemo last Wednesday and after my steroidal protections wore off, I retreated to bed. I felt lousy and exhausted. Sitting up for ten minutes seemed an accomplishment. My extreme response surprises me since the treatment, Gemzar and Avistan, is pretty light in the world of chemo options.

Am I so weak as I continue to stabilize from my January/February deterioration that I can no longer tolerate chemo? Or after five years of heavy treatment is my body just declaring its limits? I have chemo again this Wednesday, my birthday.

I feel unsteadily perched on a tight rope – on one side is the land of advanced terminal cancer, where I have learned to live well, on the other side is end stage cancer, which I have tried so hard to avoid.  images

But aren’t we all on some type on tightrope? And how much control do we truly have?

With love, marcy  images

“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” – Susan Sontag

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No Marked Exits

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There is a vague line between refusing to greet death and strategically delaying death. In this short essay that arrived in my inbox today, an oncologist calls out useless delaying tactics for stage iv patients. She summarizes, “Multiple lines of therapy in stage IV solid tumors have diminishing benefit, and this is where patients and families need to know that the finish line is the same. You can take the expensive, toxic obstacle course or you can take the easier, cheaper, nontoxic route with excellent hospice care.”

She is talking about me.

I accept my death even as I have not stopped trying to delay it.

Which is the hospice exit?

Recurrent ovarian cancer, clearly terminal, has dozens of treatment options. But, as quoted above, they tend towards diminishing returns.

In my little mind, I decide that by bartering my body to move intriguing science forward I am not just a societal burden. I am paying my way. Kindof.

Today is the birthday of the great, late Martin Luther King, jr. I am used to paying my way in more overt ways that rally others and myself to live inclusively and fairly – to exemplify MLK’s description of beloved community where no one is left untended or in need by policy or neglect.

Today, instead, I hobble with the dog around the block. I hurt. I have hurt for weeks now. I replaced the illness of chemotherapy toxicity with the pain of presumed cancer growth rearranging my torso. There is no escape as each step hurts. Seated I hurt. I am not the builder of MLK’s dream; at best I am the recipient.

I am eager for the HEATT trial to start. I count down in hours knowing that each day off treatment is a burden just as each day on treatment ended up a burden. Weeks like these make me throb with the stupidity of trying to outlive my disease.

The exits are not well marked with terminal illness.

There are dozens of things left for me to try. But when is trying itself wrong.

Adopt Me, Please? Chemo Fanny-pack Included.

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This week I used social media to spread the word that I needed a household with a spare room close to my new chemo clinic in Marin County, California to adopt me. I am not familiar with California, have few contacts there and knew no one living in Marin County.

Adopt Me!

Adopt Me!

As a community organizer, I frequently ask people to donate for a cause. I prefer not being the cause but life dealt me a needy hand in 2010. I pursue cutting edge treatments to extend my life, and thus I need to travel. I haven’t yet figured out a way to get donated flights but I can make flying my primary cost. I bring my own food, find free housing and use public transportation.

I transferred my treatment to California last round (and yes I owe you a story on that). Friends living a county away in Sebastopol offered to house, shuttle and feed me, which they did with zest. I even got a great dog companion and to review a brand new film (My Straight Son from Venezuela) as part of the deal. The commute, though, was wrong in every way. So sadly I sought out a new host family closer to the clinic.

A Great Place!

A Great Place!

How to get adopted (again) in a community I didn’t know? I started by asking patients being infused at the same time. They referred me to the oncology social worker. She was very nice but listed out only former programs, all cancelled, which would have helped me in years past with no replacement options. I was slightly aghast at the model. Actualizing a current safety net for patients was clearly not going to happen.

So I drafted a little note and started sending it out to whoever had California connections. I posted it on facebook. I sat back and waited. In the interim a stranger sent me an email. He had just read my article in the Fall Quarterly edition of YES! Magazine

Find My Article Inside on Livingly Dying!

Find My Article Inside on Livingly Dying!

on Livingly Dying and was writing to thank me. He closed his note with a Marin County address. I wrote him back and said, “Hey, thanks for your note and guess what, I am getting treated in your county and need housing.” He quickly offered support and soon his friends were spreading the word. Long story short, a community of helpers in the nearby community of Mill Valley has sprung up.

Local Host Sought in Greenbrae/Larkspur (Marin County) Community

Do you have a guest room and a big heart? Oregon cancer patient travels to Marin Specialty Care Clinic for cutting edge cancer treatment. Current travels bring me here every other week for two nights. During the day I am being infused at the clinic. I am a fit, vibrant woman. I need little support outside of a place to sleep. Questions/Ideas – marcy@rop.org

Some friends and family wonder why I don’t get a motel room. I even kind of like motel rooms – free ice and cable!

Lonely...

Lonely…

My rejection goes beyond pure budget woes although the truth is the travel of the last two months has run more then my travel for an entire year of flying to U Penn for treatment. Containing costs is the boring reason. Continuing to thrive is a bigger reason. I value community, I value barter, and I value direct contact with new people going beyond their comfort level. Finding community hosts keeps me feeling that I am living a life beyond medical care.

I fly out Tuesday for my next treatment cycle. It will make me sick for a full week — I dread the infusion. But these past few days I have focused on feeling good right now, finding new community and meeting them via the internet as I count down (not to being sick) but to a new adventure. My new host tells me, “Dinner is at six.” as she inquires on best foods. Two women have volunteered to drive me between the clinic and Mill Valley – one has a textile studio in her back yard that I hope to tour as a fellow textile artist. Perhaps I can borrow a bicycle from some one else? Keeping my true identity as I also accept my reality as a terminally ill cancer patient is not a bad balance to negotiate.

This summer I have vacationed ; ) in the Bronx Riviera, Harlem east and west, midtown Manhattan, Sebastopol and now I am off to discover more attractions of Northern California. Yes, I fit in 31 hours of chemo as well that brings me to my knees but until I am down I will enjoy the distractions. Thank you to the dozens and dozens who have spread the word and considered or signed on for a more active role in making my Marin County excursions the vacation I never dreamed of.images-2More soon on how I went from the Bronx clinic (the people’s clinic aka Bruckner Oncology) to a Marin Clinic with organic snacks and bountiful views – quite a change in zip codes!

Vignette Two – Nothing Compares 2U

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As promised, Vignette Two – Compass Oncology – another heartbreaker revealing exactly where the patient fits into the medical industrial complex.

The great singer Sinead O’Connor launches into her 1990 heartbreaker Nothing Compares 2U counting down, “It’s been seven hours and fifteen days”. I always loved that opening. Since leaving Compass Oncology July 30th at 1:30 p.m. that fragment has frequented my mind. There was no romance involved with my heartbreak. It was a purely dispassionate reminder that the medical industrial complex only wants to prolong my life one way – their way. 

But you judge as I recount.

As soon as I choose the Bruckner Protocol, my team not only took on the task of getting me into this NYC clinic but also took on scrolling for prospective local providers to partner with the protocol. While we awaited OHSU’s determination, I asked around for oncologists who were either creative or in small private settings. We needed low red tape. Compass Oncology met neither of those criteria but several people pointed to the same doc as “prioritizing what the patient wanted” and no other names were offered up. So we gave him a try despite reservations – we hoped by being very, very clear we could avoid wasting resources.

Friends worked with the new patient administrator to clarify the sole purpose of the appointment, a local doctor to administer this protocol, and underlined that given my current travels and treatment I did not want to fit in an appointment with a lukewarm prospect or a dead end. I only was willing to meet with an interested doctor. (Am I repeating myself enough?) We checked in regularly to make sure that all the clarifying paperwork was in and reviewed in advance. The new patient administrator was great and reassuring until the final week. She confessed all she was doing to meet our reasonable demands but expressed doubts that the doctor was paying attention. The day prior, she called to say the doctor had pledged to call me that day with any questions. I stayed home and waited. No call came. The friend accompanying me wanted to know, “are we on?”, I gulped and said, “yes”. She arrived to pick me up at 10:15 the next morning.

The receptionist greeted us with over 20 pages of paperwork that I refused to fill out, saying, “I am here for a yes or no. If I become a new patient I will fill it out.” The new patient administrator was called in to back me up. I now had a clipboard of only three pages to fill out. I thought about the ever-expanding marcy westerling medical forest

clear cut for paperwork never to be read

clear cut for paperwork never to be read

being clear cut in my honor – a clear cut I could come to terms with if any health care provider had ever proven to read the reams of pages they demand. Sometimes I entertain myself by leaving pages blank – no one ever calls me back to fill in the blanks. Never.

My friend and I return to waiting. We watch a YouTube of African cocoa growers being introduced to chocolate, the product they make possible, for the first time. It helps five minutes pass. But then I am out front of the building pacing the in fresh air that gives me calm – even if the fresh air is in a large parking lot on a busy street. I create a pacing grid keeping me near the entrance. My pedometer will tell me I pace for over a mile while waiting. We are called in, put in a typical small, airless room to wait. I open the door, pace the hall both to observe and calm. I watch three women at a counter chatting. I decide to engage. “When do you think I might actually see my doctor? It’s been quite the wait.” They all rush to aid but of course have the non-answers of the system, “oh, he must be on his way.”

Eventually, a cheerful young woman arrives to review. She starts off poorly inquiring about a doctor I haven’t seen in years. This would be the pattern for the next hour. I was not nice. I said, “hmmm. I wonder if you have found the health summery that clearly shows who are my current doctors.” I then clarified, again, “I am here for one reason and one reason only and that is to hear if the doctor will do a specific protocol. It is a yes – no situation.” She left and then sent in the next woman who spent the first five minutes shuffling papers in her lap but at least in an effort to drill down to the topic at hand. Clearly no pre-work happened. She avoided eye contact. I was now a problem patient.

Her questions once started were mainly relevant; although she too was convinced doctors and systems of year’s prior were still treating me. Whatever. I moved her to 2014. I moved her to the protocol. There was a lot of silence as she studied the simple sheet of documentation. Her questions got smarter as she focused in. She might not have done homework but she was a quick study who wasn’t sure she liked what she saw. She said, tell me more about this clinical trail. I told her it was not a clinical trail. She insisted it was. I insisted it was not and three minutes were lost with the back and fourth that ended in truce not resolution. Then she decided it must not be legal. I assured it was, that all the drugs were FDA approved and covered by Medicare. She disagreed. I said it was off label use, routinely done. She assured me it was never done. Sigh. This was getting old. I switched tactics and asked her to look at how healthy I was, the robust lab results and the declining ca 125, perhaps, my body could provide testimonial. She conceded my point.

She left the room, we returned to waiting, me back exploring the boring hallways that make up every medical facility I visit.

The doctor arrived. He entered and immediately informed us he would never do the protocol. What perfect clarity for yesterday! He informed us I have recurrent ovarian cancer and it runs a certain course. Yes, I concurred, why did he think I was being so creative in my treatment options? He then proceeded in his own go round of why Medicare would never pay for this; my facts were entirely not relevant although I repeated Medicare was already paying for these treatments for me. I was ready to leave. My friend had given up a half day of work. The doctor closed with my favorite comment, “As a quality of life issue, you should not be flying back and fourth to NYC every other week for treatment.” OH MY GOD – this is exactly why we were in his office. Agreement and rejection in one farcical visit.

This doctor and this agency had every right to reject my request for a certain treatment. In fact, we anticipated it and thus requested they skim the few pages of data and give us their first instinct opinion. If it was a likely no, no need to proceed. We met every one of their requests for endless paperwork. They clearly understood their own staff’s repeated request that they review in advance. In the medical industrial system, those in power nod their heads agreeable, and proceed with the endless bureaucracy that ensures they can bill and the patient’s have a new hobby – sitting in waiting rooms.

By the way, the greeting for patients on the Compass Oncology website  states, “The experts at Compass Oncology are here for you every step of the way with answers, support, compassion and respect. We understand cancer treatment is a highly personal journey, uniquely different for each patient. It is a journey filled with many decisions and potential directions. For decades, the physicians and staff at Compass Oncology have been united by a singular focus: to help our patients find a clear path to hope and healing.”compass-footer-logo

Scapegoating of the Disabled 2013

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Today I posted on facebook a link that came across my inbox. I editorialized before the post,

“I am a proud voter and a proud beneficiary of social security disability. Both keep me alive to some extent. And now this….I hope they add MARCY WESTERLING to the list – come get me.”

Flyer Targets People with Disabilities

August 2013

August 2013

People with disabilities are now the target of a hate group in the Portland area. Neighborhoods are being littered with this handbill attacking people with disabilities who receive public assistance. With an underlying tone of violence, this vigilante attack states that people’s names are being posted where they can be seen by taxpayers. The author suggests that receiving benefits makes people with disabilities a threat to the republic.

The Portland Commission on Disability requests that anyone who has received or seen this flyer to please report it so they may track it. Thanks to Human Rights Commissioner, Linda McKim-Bell for bringing this to the Commission’s attention.

Publicly sharing my name for broader use in this context was a conscious but quick decision. I was taught that to stand up for justice, you must stand up out loud.

Adding my name also deals with the issue of ‘passing’. I have passed throughout my life. I am an Aryan of the type Hitler claimed. I am as white and fair as they come. I look heterosexual, if there is such a look, but certainly the presence of a husband helps the case. I am slenderish, menopause and cancer treatments rounding me out more than a bit. I have lived a life of privilege, and even within the sour luck of being diagnosed with metastatic disease, I have managed to work a tough system to gain access to Disability and Medicare – two fantastic programs denied so many because of the waiting periods and reduced income.

I have lived a blessed life.

Standing up for a just society sometimes means that I have to go outside my comfort zone and declare my privilege. I don’t look disabled. I don’t even look sick most of the time and when I am sick, it is invariably because of the treatment. You mainly feel cancer when you are dying. I am not dying right now. I am just terminally ill. There is a big difference for some of us.

I stand up for every person confined more dramatically by his or her disability, vomiting in a bowl, restricted to an institution, or machinery. There are so many faces of disability including the many that don’t qualify because they don’t know to try or they fear the stereotyping that this flyer displays. The flyer says disabled = slackers, the ruin of our democracy.

I share a concern over our democracy but more over how every day whistleblowers are criminalized versus valued, and my list goes on.

We have a lot of disabled people in this country. By some accounts it is a growing number, and perhaps, a growing issue. A dialogue about disability is probably overdue but these flyers should not lead the debate. They could if we were to stay silent. And furthermore, of course, we can find slackers in our bunch. They are there by the pound on Wall Street and in every other layer of society. Let’s not find the 1 case in 10,000 to make a dishonest storyline work.

Disabled is a label few would choose – to be put ‘out of action’. You only need to hang with some disabled to see a lot of action but it may be different action. Some of us blend in well, others are quite obvious, and for both categories the onus is hard – proving you are normal versus taking on the pity/compassion of others. Adding in the label of slackers’ is not just wrong, it is too much because we are a group of people who wish to not have so many barriers to get through before resting.

As a currently able-bodied disabled person, I share this great cartoon and caption. I hope I look great but believe me there is a lot of effort to pass for today. And I am never sure about tomorrow.sick

Warmly, marcy