Tag Archives: chemotherapy

Dreaming in Ten Day Allocations

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A Brief Update from Marcy

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

You Need Your Bowel - outer pink.

You Need Your Bowel – outer pink.

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

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

White bread only!

White bread only!

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

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

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

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

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

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

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

Much love, marcy

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Love and Luck

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

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

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

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

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

Thank you all! Love, marcy

A Summary Shout Out to Bruckner Oncology

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Please Note: I still owe you an update of my next medical steps – coming soon! Until then let me close out this phase with the great Team Bruckner.

Back in June 2014 I posted about Joining Team Bruckner. I have made subsequent posts about the experience on the Livingly Dying blog. I completed a total of 13 treatments, each two weeks apart and all requiring out of state travel because I could not find an Oregon oncologist to provide the treatment.

I traveled to the Bruckner Oncology clinic in NYC four times and completed an additional 9 treatments in California under their guidance. As I take a break from the protocol it seems a good time for a summary update.

Bruckner Oncology is where many patients go when their oncologists say, “There is nothing more we can offer you.” Some patients, like me, start earlier in the process usually motivated by a cancer crisis. Over the last three years the docs at Bruckner Oncology have increasingly wrapped their big brains and huge hearts around recurrent ovca (ovarian cancer) because they like to focus on the cancers that stay especially deadly.

The partnership between the elder Dr. Bruckner and the younger Dr. Hirschfeld is a thing of beauty allowing every patient access to their best collegial thinking. I have worked with oncological teams in four different settings beyond Bruckner Oncology. I have had few complaints. My teams were caring and solid. I accepted the extremely limited contact with my actual doc. Nurse intermediaries represented me between the 15-minute visits with my oncologist. It worked but rarely felt like it encouraged dynamic problem solving.

To arrive at Bruckner Oncology is to leave that tiered system behind. Yes, there are PA (physicians assistants) and receptionists but they are a bridge not a barrier to your bountiful time with the doctors themselves. I can email or call my doctors directly at any point and expect a sprightly response – even when one is in Europe and the other had a baby late the night prior.

It’s a people’s clinic. No one is turned away. Every problem has an answer and they just don’t stop trying creative possibilities. Saying that, patients still die there. Recurrent, late stage cancer is not an easy to tame dilemma. They keep people alive for longer and have bragging rights on some amazing cases headed for hospice and now in their third year of remission with pancreatic cancer and more.

Their starting cocktail, adapted as needed, is built on the idea that lower doses of compatible chemos allow more impact with less damage and less development of resistance. But like any toxic cocktail it can’t be used forever. They start with that cocktail, continue through a post remission period and then tinker from there. Actually, they tinker throughout. That is why the level of contact between the doctor and patient is so high; they really need to KNOW how we are doing. They order a more comprehensive set of labs than most of us are used to. They listen, they look, they wonder. Throughout the infusion, they roam the room on a regular basis. And their interaction with the PAs and nurses is collegial and constant. There is a lot of respect being shared. (It also seems like staff love their jobs.)

What you don’t find there is a moneyed spa. The people’s clinic is crammed elbow to elbow. The nurses had better be damn good because a lot of the triple checks of other places are replaced with high competency expected of the primary nurses. They deliver. Visitors are often made to wait elsewhere or left standing for hours on end. It is crowded when your policy is to accept everyone. My husband noted, “It’s a bit like getting your chemo in a bus station.”

The front desk is understaffed. They can require multiple checks on every request but you see how much they are handling and so you partner with greater grace than you might at an overstaffed office, where systems are ironically often too staffed to work well. Here the problem is the opposite.

The treatment is Medicare covered. They do use creative, proven approaches like iv vitamin c that is yet to be paid for by any standard insurer but they are quick to advise you of out of pocket costs before you incur them.

The location of the clinic is in the Bronx, which is easy to get to if you are comfortable with public transportation. NYC is a Mecca for being able to get everywhere on little money. The American Cancer Society offers free lodging at Hope Lodge in midtown Manhattan – and an express bus available 5 blocks away goes to two blocks from the clinic.

There is no question that travelling to treatment is a challenge. I traveled cross-country and hated it. And it is expensive! I transitioned to a clinic in N California for treatments – still a slog but staying in the same time zone helps. I continue to seek a local provider but as I document on my blog that is not easy to do in our current medical industrial climate.

If you want more options I recommend that you flag this clinic for a time in your treatment when you don’t like what your local team is offering up. I started at Bruckner Oncology when my cancer surged from no evidence of disease (NED) status to being measured 45 days later in inoperable inches. Now I transition to a Phase One clinical trial knowing that in my six months of care with Bruckner Oncology, they disappeared my high volume of cancer. I transition because my cancer is starting to break through the cocktail and my body seeks a chemo break. I have no doubt that I will return to Bruckner Oncology again in this cancer journey.

Current Update

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As these shorter, darker days hurtle us towards the close of 2014, it seems time to give an update. Just how am I staying alive these days? And what are my next tricks, if any?

Since late June of 2014 I have been doing several days of chemotherapy every other week. I am on a cocktail called the Bruckner Protocol that employs a varied mix of chemo drugs (often off label meaning FDA approved drugs but not approved for my form of cancer) in lower dose combinations that intend to intensify results without the toxicity. It has shown some success with hard to treat cancers. Using the protocol with recurrent ovarian cancers shows short-term results but there are challenges maintaining disease stability. It is no magic wand.

The doctors at the clinic are confidence inspiring in their relentless capacity to utilize the latest science to keep patients stable. Stability means a lot when you have untamed, terminal cancer. (Remission would mean more.) Drs Bruckner and Hirschfeld were pleased to hear that I not only had already started immunotherapy prior to arriving at their clinic but also that I was waitlisted for a next step immunological trial to open. I needed the Bruckner Protocol as a bridge to keep me alive. That was June 23rd.

I completed four treatments at the Bronx based clinic in NYC, a hefty commute, transitioning to Marin Specialty Care in early August. marinpagephoto2

I am just recovering from my seventh treatment in Marin bringing me to a total of eleven 31-hour cocktails.

Marin Specialty Caremarinphotonew3 became my new home when no Oregon facility was willing to treat me. (Thanks Oregon!) I had heard of Marin Specialty Care from the same woman who had initially presented the Bruckner Clinic as an option to track. Inbal was further down her relentless path with this disease when we met. With a young son to raise and a passion for life she was willing to try all options. Inbal blended zeal with research. She reported on the Bruckner Protocol with a journalist’s skill. For two years I saved her notes. When my cancer surge arrived in June I knew exactly where I was headed, and, in fact, flew off to the Bronx within a week.

Inbal lived in the woods near Oakland, CA. She chose Dr Jennifer Lucas as her oncologist, commuting the hour to Marin Specialty Care. Dr Lucas gave an initial no to Inbal when she requested the Bruckner Protocol but when asked to reconsider, Dr Lucas did, saying to me, “Who was I to say no. She and I both knew that I had no other way to keep her alive.” It is a rare oncologist that can set aside traditional doctrine and agree to a more daring protocol led by the patient. Dr Lucas watched the protocol both work and not work for Inbal. (Inbal died this September.) The clinic used the protocol on other hard to treat patients availing themselves of the free advise of Dr Hirschfeld in the Bronx. I arrived in August of 2014 as their first patient to fly in to their small 7-chair facility but patient number 9 on the Bruckner Protocol. Their entire team had expertise.

It has been an ambitious treatment period. Every two-week period I have three/four days in treatment/travel, recovery is a rather fierce three – five feeling lousy days (during which I moan and repeat, “oh my goodness” a lot) and then I have my rebuilding period in which I have daily health appointments and while my physical body is feeling better, my internal blood work is the weakest leaving me in a state of malaise. It is hard.  (14 days. 4 days treatment/travel, 5 days recovery, 5 days rebuilding.)

An additional challenge is maintaining a former life! My most vibrant health days are in Marin. There my body is in the best shape of the two-week cycle. Volunteers drive me to the airport, fly me by small plane to Marin, new volunteers scoop me up and bring me to my host family. I am fed and loved and dropped off by the 8 a.m. start of the chemotherapy drip. I am finally unplugged from my chemo pump 31 hours later to rush out the door to the driver who gets me to the Angel Flight, which brings me home. The love and dedication of these volunteers floors me. Their motivations fascinate me and, independently, they have become quite a social circle for my few good days each cycle. The fact that my new home is sunny and mild year round doesn’t hurt. My California days are nice.

My Oregon friends wonder though. I return sick and discharged and barely recover before departure. In Oregon, I am largely a missing person.

Where's Marcy?

Where’s Marcy?

All this effort initially showed great promise but back in September we got the first indication that the cancer is working around the therapy. Various tinkering is being tried, timed well as my body refuses to endure additional doses of some drugs. Oxaliplatin replaces Carboplatnum. Avistan is dosed when the stars or protein levels in the urine align. I get every infused anti-nausea med known and yet still, I endure the nausea, the nausea, and the endless nausea. Until one morning it is gone and much of my memory of the darker hours.

What is next? Just this week the University of Pennsylvania released the new T Cell Depletion Protocol that I have been on the waiting list for since June. The first woman will be accepted in January, with a new woman started each month with dose escalation every third patient. When will I be called? Will my weakened body still qualify? And can I keep my cancer calm until that moment?

I think I can. That’s what this whole six-month slog has been about. For now I count down to my next few spa dates in Marin, hoping my new friends are well and the sun will be out. That is far enough into the future for me.

Ten Days of Okra

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

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

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

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

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

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

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

Ever hopeful

Ever hopeful

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!

Fighting for Treatment (again)

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When my cancer surged unexpectedly in early June, I re-oriented my psyche for a physical battle. I had never before had such a high volume of cancer nor felt it with every move and it had showed up with such speed, in just 45 days off of treatment. With surgery removed as an option and my track record of not being super responsive to chemo, I knew I needed an aggressive plan or to be content with starting a more active stage of dying. I chose the former – the Bruckner Protocol. I had bookmarked this protocol over a year prior should I be in this exact circumstance. Within a week of contacting the Bruckner Clinic, they had reviewed all of my paperwork, engaged in salient back and fourth conversation (often after-hours between me and the actual doctors) and scheduled me for an intake visit and 29 hours of chemo.  My first chemo cycle happened within this first week!!!!

The Bruckner Protocol is a minimally documented or published regimen with limited longitudinal data. (The doctors are focused on doing versus writing up – the data awaits compilation and presentation.) I  fly cross-country to receive the treatment in their clinic.  I made the choice based on being a highly informed, extremely motivated terminally ill patient. I wasn’t sure this protocol, or anything, could keep me stable, but I knew this protocol had a higher possibility of letting me return to stability and a shot then of staying stable with other treatments. It was my best hope.

My most trusted peers affirmed the decision. It was bookmarked in their “last ditch” file as well.

I have now had 3 rounds of my 29-hour, every other week NYC based infusions. My tumor marker is in steady decline. I fly back to NYC next week for round four.

A full 50% of my life now goes to travel to NYC, infusions and recovery. In the other week, you might wish for me as I wish for me, relaxing moments with friends and family but no, you would be so, so silly. My good week goes to full on battle with the medical industrial complex. I did not select this battle. I am merely seeking a local doctor who will follow my treatment request and give me the Bruckner Protocol, which uses only FDA approved drugs. Apparently, patient’s rights do not included allowing a dying, informed patient to present an obviously working, out of the mainstream choice.

Let me give you, dear reader, a few vignettes to illustrate the perverted life of a patient fighting to stay alive through the end of the year.

Vignette One – Oregon Health Sciences University (OHSU)

OHSU Opulence

OHSU Opulence

I have made clear in prior posts my love of OHSU. While I wonder at times what it means that they are such an opulent campus (who is paying for this?), I enjoy the vibrant energy, art-filled, green-filled spaces that buffer tough treatments with distractions. They are a public, non profit who in their own mission statement claims, “Setting the example for integrity, compassion and leadership, OHSU strives to:

  • Educate tomorrow’s health professionals, scientists, engineers and managers in top-tier programs that prepare them for a lifetime of learning, leadership and contribution.
  • Explore new basic, clinical and applied research frontiers in health and biomedical sciences, environmental and biomedical engineering and information sciences, and translate these discoveries, wherever possible, into applications in the health and commercial sectors.
  • Deliver excellence in health care, emphasizing the creation and implementation of new knowledge and cutting-edge technologies.
  • Lead and advocate for programs that improve health for all Oregonians, and extend OHSU’s education, research and healthcare missions through community service, partnerships and outreach.

June 13th, I got my devastating scan results and a phone call from my OHSU doc assuring me, “we will fight this.” That afternoon I emailed her the first of many detailed emails explaining why I did not want to accept her treatment proposal but instead requested that she partner with me in utilizing the Bruckner Protocol to beat back this cancer volume. I sent her the links to the clinic as well as all available papers on the thinking and delivery of this protocol immediately. It was a complete introduction to the clinic. I thought OHSU’s mission might make this an easy match.

Given my arduous treatment schedule, I insisted that her office wade through the materials prior to me coming in for an office visit. After all, a visit should be based on their agreement to use this protocol because I have already made my decision. The office staff kept asking for more information and finding new red tape that needed to be worked through. They were attentive. We were responsive. Finally, it was time for the office visit. It was short and upbeat, with the doctor arriving, asking if Medicare would pay? I said, “yes.” She said, “Oh, well, then this is a no brainer.” She then explained why she had no reservations with the protocol even though it was atypical. She felt “the doses present a tolerable risk.” We spent the remainder of the office visit with her recruiting us to a fundraiser. We left light-hearted – we had done it! We were back at OHSU!

The next week I returned for a final visit to Bruckner Oncology. The evening of the first night of treatment, I got a message that the OHSU Pharmacy had met and rejected the protocol finding the documentation too limited (it is limited.) By the next morning I was wretchedly sick and the clinic had a heck of a time stabilizing me. Bad news, travel and poisons don’t mix very well, it seems.

The saddest part of the rejection came that Friday morning as my OHSU doctor, a wonderful, compassionate doc, left me a voice mail disclaiming any endorsement of the protocol, calling it “crazy” and asking me to return when I could document its efficacy. (Obviously, my rapidly declining ca 125 not counting.)

A research facility requiring documentation for a treatment is entirely reasonable. To ignore the material presented and waste 45 days of a patients time by skimming and not processing what is provided, that, dear reader, is wrong. Maybe what I am doing is crazy. But the deciders could have decided that June 13th when I provided them with what there was in terms of documentation. They failed in their job. I did not fail in mine.

Vignette Two – Compass Oncology coming soon – another heartbreaker revealing exactly where the patient fits into the medical industrial complex.

 

Reporting In

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

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

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

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

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

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

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

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

Mystery Bag by Bev Lipsitz

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

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

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

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

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

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

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

Oh no! Now what do we do?

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

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

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

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

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

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

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

 

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

Off to the Bronx Riviera

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Not every infusion center lends itself to the vacation metaphor. The Bruckner Clinic is a little on the gritty end. And life-saving experimental chemotherapy cocktails have their own emotional and physical challenges rarely woven into the vacation experience but, hey, they are just barriers. In hours I fly off with my beloved for 29-hour infusion number two at (ok, near) the Bronx Riviera. Not bad, eh?

We are, actually, excited. We may not get a chance to frolic on a beach but we will get an adventure, time in the big city and time together. IMG_8714For those of you who do get to vacation in the Bronx, send us a postcard from Orchard Beach; we are curious.

I have felt strong for almost a week, my belly feels significantly less full of surging cancer and I am ready for round two.

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Facing Chemo – A Personal Perspective

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I was asked to write the below this week. Done, I am now attacking my work space, an intimidating task as I hoard EVERYTHING just in case it could be used in a future project. I want clean. I want work surfaces. But my evil twin brings home every tossed aside item I come across. This cleaning of the art space is a soulful negotiation between my two selves.

beloved clutter

beloved clutter

So rather than write a new blog post, I share what I just wrote for something else, hoping it just might serve a purpose here.

Spilling out on to the floor!

Spilling out on to the floor!

warmly, marcy

Chemo: How I Faced It, Tips I Might Share – A Personal Perspective

A photo documents me beaming out as the very first chemo drip started. My long hair, a source of life long pride, was having a good hair day. A table was laden with healthy foods and drink. I look strong and hopeful. The truth is moments later I asked everyone to leave, turned off the lights and I lay there crying the slow, quiet tears of defeat that seemed to befit a younger stage IV ovarian cancer patient.

My six frontline chemotherapies were pretty standard. No real crises outside of the ongoing saga to find a willing vein. Oh, to have had the starting wisdom of a port! Eventually I got “plugged in”, infused and left, counting off one more chemo treatment until they were done, as was all my bodily hair, and I walked out to build a life in remission.

I approached frontline chemo as an endurance test. I rigorously took notes and followed them attentively. I started a “blackout period” free of all supplements and green tea the day prior to each infusion that lasted for the two days after infusion. A support team coordinated having food available and people to look in the days I would feel the sickliest. The days, in fact, when the last thing I wanted were visitors. They were assigned to bring a book and leave me be, that is if I didn’t head them off before arrival with assurances of just how fine I was. Compared to the horror stories of imagined chemo, I had more good days then bad albeit always weary in a newfound way. I walked every day. I ate well. I enrolled in a local clinic for immune deficient people that offered weekly treatments of acupuncture, shiatsu (Chinese massage), and access to a cancer-trained naturopath who assigned supplements that my Western team of medical experts then approved me to take. East met West courtesy of my body.

I was recovering from surgeries to my chest and abdomen and the news that I had one of the worst cancer diagnosis imaginable. Shock, grief and a raw primal fear I had never before experienced were daily components of my initial reality. The routines of chemo survival helped me by being concrete.

My husband and I moved in with friends in the city when it was obvious I faced a huge medical phase. This decision allowed us to under-function initially as friends took over being the competent leads. They told us what to do when. This allowed us space for walking through our emotions. Living with friends infused such a sober period with joy, love and laughter. I don’t know how we would have handled this same crisis at our beloved home in the woods but I suspect the increased isolation would not have served us well.

Four years later, I am a chemo pro. My port is a dear friend and I have different tactics for the different chemo regimes offered up. My life is good; I look healthy and bike or walk everywhere. I feel strong and hopeful most of the time. I have pride in a new head of hair even if shorter.

Surviving Recurrent Ovarian Cancer

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

Why not feel alive?

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

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

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

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

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

The First Vaccine Treatment

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The Philly Chronicles – Trek Four, Part B – The First Treatment

The terrain of hope is rocky. My excitement to start the treatment phase sustained me through an uneventful flight from Oregon to Philadelphia. I went from plane to train to the hospital campus to meet an incoming candidate for dinner. Her medical intake had started that day at 9 a.m., making our date for 5:30 seem reasonable. She emailed a series of apologetic notes of delay finally being released from her day of screening tests at 6:15. I recognized her easily by the bandage showing where she had last been punctured. A shared meal of falafel from one of the many food carts was delightful as we exchanged information, motivations and snippets of life stories – cancer serving as the frame.

We bid goodnight and I began my two-mile walk towards my housing with regrettably over packed luggage. Hip and knee pain had me whispering ‘ouch’ with every step. The walk is wonderful, though. The first quarter crosses the smaller of the two rivers that encases downtown Philly. While crossing over the Schuylkill and the expanse of expressways paralleling the river there is an amazing view of down town, a striking skyline. At dusk there is a line up of folks taking photos. The next stretch is dense city, mixed residential and commerce, the standard three stories allowing peaks of the skyline on the left.skyline

The following 7 blocks are not too exciting but then the street life starts accelerating. It is not a boring walk. Public art is everywhere. You can walk the same city block many times finding new things to admire between people watching, architecture and art. Murals dominate. As a quilter I am quick to note that the majority of quilts and murals are, frankly, not too exciting. In Philly I have yet to see a mural that has not met the mark for art. They tend to be three stories high and broad and from what I gather the Philly mural project has engaged a long-term team of artists to guide the community process for each site. The commitment to art and storytelling fuses brightly in Philadelphia. mural

In no time, I am at my own structure, juggling luggage, keys, and memory to get in the door, up the three flights and then, ‘Hello, roomie – I’m back!!!!”

June 5, 2013: The next morning I was to report in at 10 a.m. I was reluctant to end my long night of sleep – the bed felt too good. Twenty minutes before departure I got up forfeiting food shopping in favor of a quick shower. I should be done early enough to meet food needs. The walk was slow – my aching joints create a pacing that I am still not used to. Nonetheless, I arrived on time.

My handler was there by 10:05. The screening vial of blood was in motion by 10:15 but that would be the last thing on time for the day. Things started going awry. The person that normally did the physicals while patients were being prepped for the infusion was off. I needed to abandon my chemo post and relocate for the doctor. The doctor was busy. I was set in a typically dour examination room to wait and wait I did. After 15 minutes I opened the door to mitigate the stress of the confined space. After 30 minutes time started passing dramatically more slowly, then 45 minutes, then 60 minutes – tension settled in. I was now taking a roller-coaster plunge into the darker side of hope – despair. Why was I here? What life was this? I distracted myself by listing all the remaining things that could go wrong that day sidelining chemo, putting the scripted protocol off kilter and exiting me before even starting this foolish Phase One path.

The charm of the arriving doctor evened things out some. The exam was done in minutes, I was cleared for chemo and a new nurse sent me back to the chemo-waiting lounge. Like I knew where that was in this inner maze of the building. I stumbled back, unraveling. It was now past noon and it was clear that these accumulating delays meant that I needed to find food before I was strapped into my chair for god knows how many hours. I also needed to breathe a moment of fresh air of the delightful day outside if I was to regain calm.

I got a small bite to eat in the sunny warmth then reported back in only to be told, “sorry, there are computer problems preventing your clearance for chemo from showing up.” I convinced them to call me when the problem was resolved and ran outside. I found a patio that allowed me to stay close to my bank of elevators but enjoy a sense of normalcy. It would be ok, I kept assuring myself.

The call came clearing me and at 2:00 I was being seated in my chemo room. The next struggle presented itself. One of my infused drugs, a drug I hate and have had for over a year, would need to be infused over 90 minutes instead of 30 because they insisted on treating me as if I had never had it before. That was absurd. It was getting late. I challenged the edict requiring phone calls. Meanwhile the nurses were being sprightly in hearing me beg them to get my port accessed, start the pre-meds and leave me to the negotiations.

The nurses were wonderful and did their best to zip my infusions through but the mandated avistan drip speed from 30 to 90 minutes held firm because of the stupid research protocol. I hate rules based on weak footing. Someone showed a lack of imagination when crafting that section, and I lose another 60 minutes to hospital life. It adds up.

But protocols, once written, cannot be changed with ease. A research protocol risks termination with every change. I got to fume at what I experienced, which is genuinely frustrating, knowing when calmer that it is just the architecture of checks and balances within research. It is what you sign on to. Hope and frustration!

Infusion done, released, I delight at the smells of a tree in bloom. I breathe in life. Outside I am content, confined I agitate. Computer systems went down, the wrong people had a day off and the relentless rules that indicate you are the property of research combined to make my first infusion an all day affair. It was a beautiful day just as it was beautiful the day I flew. It’s summer, time to be outside but not for this research subject. I am relegated to the various benches for the permanently waiting.

Vaccine day – June 6, 2013: I trudged back to the research building. This day was cool and gray. Without the usual cushion of steroids infused with yesterday’s chemo, I felt gray as well. (Steroids are barred since they suppress the immune system and this trial is about building the patient up.) I had not experienced this level of exhaustion for quite a long time. Dressing that morning required breaks lying down.

The vaccines were a big moment, I had worked for 20 months to get to this point but having emotions was beyond me. I was too tired. I arrived to my waiting area the required 30 minutes early. The Paris Open on TV held my attention as I also tracked the room. Not many people, in fact just one other woman roughly my age quietly speaking with a friend. Hmmm. I peaked to see if she had the same envelope I did but nothing showed. The doctor came out saying, “Good, you are both here.” He graciously came over to me, the vaccine first-timer, to shake hands and assure me this would be easy. Then he took time with the other woman. As soon as he hurried out “to get things started,” we exchanged names and emails before we were whisked to our different rooms. She was the patient enrolled immediately prior to me, the second in our cohort. There was little time for other details as a parade was starting.

At the head was the ever-cheery Dr Tanyi, then support staff with coolers, clipboards, then rolling machines. We were told to get in line as we walked down a hall to a new section of rooms. The other woman urged me to go first knowing that first time jitters would only settle down once it was done. I was ushered into a tiny room now filled with parade participants plus some new folks. I didn’t know what to do until someone indicated that I should get in the bed. A bed, I hadn’t expected that. Given my exhaustion the sight was most welcome. I was shaking hands with old and new staff while trying to maintain some dignity as they all formed a tight, tight, tight semi-circle around me. (Think room as small as an elevator now including a bed, equipment and 8 people.) My lead nurse was holding a large syringe in the air. I make it my business never to look at needles but in this tiny room it loomed large. The other one must still be in the cooler.

I lay down, draped with a blanket as I scooted my skirt down. The doctor kept patting me saying, “This will be just fine, you’ll see” then quickly turning to a peer, narrating the process. She was being trained in, it turned out, to take over while Dr Tanyi was gone the next month. Damn, I don’t want her to be trained in on me! My undies were protected with napkins as goop was placed on my inner thighs. The ultrasound beeped to my right as we all waited for the radiologist to arrive. It was a long five minutes of trying to avoid looking at a needle held high – of trying to preside with grace as the centerpiece of the room. Radiologist in place, I fixated on the ultrasound screen wondering if we might find a baby but the search was for lymph nodes. “Ah”, I heard but I saw little amid the gray striated screen. When would the needle go in? Ouch, it was going in and that I could see on the screen. It was a slow process of everyone agreeing that it truly was in the lymph node and then that vaccination was done. Next side and it was now the doctor-in-trainings turn. I would have loved a sound bubble rather than hearing the list of do’s and don’ts as a much, much slower process started on my right. Was she in the node – were they really going to discuss this endlessly with the needle in me? Finally, the slightly more painful vaccination on the right was done.

The parade director put the sides up on my bed, and wheeled me from the vaccine room into another room for observation over the next hour. At 2:30, I was dismissed from the bed and faced five hours of walking around counting down until time to return for a blood draw. The weather had shifted with tropical storm Andrea arriving. I had a list of places to explore but my bag was heavy and I wanted to lie down. The University of Pennsylvania is a beautiful campus but there was no place comfortable for my post-chemo body for more than a few minutes. The temperature kept dropping. The clouds grew more ominous. I wanted a bed.

Eventually I got the 7:10 pm (protocol forgot to allow a window) blood draw and started my slog home in a drizzle wishing I hadn’t been so confident this morning that it wouldn’t rain. Home at 8, too tired to eat I went straight to bed sleeping until 9:30 the next morning. I awoke feeling better. In fact, my hip pain of April and May seemed gone. I was still tired with nausea but within acceptable limits. I relaxed with my roommate, packed then headed out for the final blood draw at 1:10 p.m. exactly. With all my luggage and tempestuous rains starting outdoors I grabbed the train to the airport. It was a direct flight home escaping just before the storm hit full force, arriving into the arms and care of my husband. Tired, nauseous but miraculously clear of hip pain – a benefit it seemed of the cytoxan chemo that, apparently, can be used for arthritis. My first treatment trek was done.

Plodding Along

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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

Happy Holidays!

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It’s December. Happy Holidays! I hope you are all well, enjoying the days of darkness and the promise of rounding the bend back towards more light with solstice.
My life is peaceful which I adore. I continue with my weekly chemo infusions, now over at OHSU which I refer to as my spa. It is a warm space to spend time – so much so that I rather enjoy my weekly ritual. The low, steady chemo dose approach is much easier to tolerate and even the projection that I would lose my hair seems unlikely. It is thinning (and I leave a trail of hairs as I move about) but not so much that I fear being bald. Small victories that I relish! I have added in fasting before and after the chemo in the hopes that it saves my good cells and targets my cancer for the toxics. Who knows. Each effort I make adds to my sense of possibilities.
Being a patient at OHSU is wonderful. It’s vibrancy exudes hope, whether for you or the next patient, but you can feel the hum of progress. I now get to experience a health team that is fluent on MY CASE. They seem to have systems that allow them not to appear wasted from an overwhelming workload. They are cheery and aware. And treat me like a colleague as well as the patient.
A favorite moment being when they asked me something about my confidence in the current treatment plan. My response included the intent “to be around until I am 72.” The doc turned to her computer without pause and said as she typed, ” well, thats a pretty important goal to get in your chart.”
I am moving towards testing with the exact dates yet to be set. I had hoped to stall until after the holidays but that may not work. Luckily, my blood tests indicate that I am responding to this chemo, although I need to remind myself that in this long 15 months of progressing while on chemo, my blood work showed I was responding, and I was. It’s just that I was also managing to grow new cancer. But with a 10 cm tumor surgically removed in October, the hope is that I have a head start this time.
The vaccine trial that we are trying to get me fully accepted in to awaits. Vaccines best hope of working is with patients that have a very low amount of visible tumor, ideally none. They are not equipped to disappear existing tumors. Their goal is to re-calibrate my body to be able to fight off future cancer deformities as they happen – like is happening in the bodies of the rest of you that do not have cancer growing. (Yes, you too have cancer, your bodies just evict it.) My intent is to go to UPenn regardless of what the scan shows and argue my case. That will likely be in mid January.
A hearty thank you to all who humbled me by attending my Livingly Dying reading on November 15th. It was lovely to see a standing room only crowd. My apologies to those closest to the door who stayed despite not being able to hear!
much love, marcy

Updates

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Thanks for bearing with me during the very hard months of August and September. I must say that my October, which kicked off with surgery, has been great! Being back in the embrace of treatment allows me to decide that my cancer is being disappeared. My next internal scan could have been as early as now but it is now scheduled for late December/early January and that thrills me. My costume for Halloween will be that of a woman without cancer. (Oddly enough, that looks just like me! Note photo above where both Holly and I are in costume.)
Updates:
Melting Matilda, my remaining tumor being named Matilda, (to the tune of Waltzing Matilda) is my current theme song.
My extracted tumor qualified for UPenn by having more than 100 million cells. It took a full year to get to this place! The next steps start in January with the scan and then a trip to Philly (anyone have frequent flyer miles they are desperate to get rid of?) I would sign paperwork that day *if* my cancer is stable and shrunk and I pass other modest tests. Then two weeks later I would be back for a rather invasive process that harvests dendritic cells from my white cells through a dialysis like machine to allow final production of the Marcy Westerling Vaccine. Two weeks to a month later I am back for the first vaccine treatment! I would have a minimum of 5 trips to Philadelphia so you can see why the donated miles will help. I am also checking out free rides in corporate jets for cancer patients. (I know – too funny.)
My current chemo regime is weekly and low impact but there are also unknowns as I am early in the process and a second drug should get added in next week. Will I lose my hair? Place your bet – half the providers say yes, half say no.
My transition from Kaiser to OHSU should happen this week. Honestly, I still do not know if it will happen. Tuesday or Wednesday I will make the final call to see if the incredibly cumbersome process of getting accepted by a prescription drug plan is complete. (For some reason they could not check the right box that allows an under 65 year old to transition plans in their entry window. Medicare can inform me that they messed up the submitted form but since medicare cant talk to them or vice versa – dont ask me why – being right has little value. So I reapply and again they dont check the right box. Really! Since I have a November 1st intake appointment at my new provider and need chemo election day a resolution happens this week be it Kaiser or OHSU. No call today so I am hoping that they finally found and checked the right little box.
Many of you have been very generous with care packages of late. You got me through a hard time. Now you can save them for the next hard moment of testing. I truly pray that after 15 months of recurrence treatment w.mainly bad news we get a little break in the clouds – disease reduction and clearance for the Hail Mary pass to kick off 2013! (And decent election results….)
And lastly, for those in driving distance to Portland I am doing a reading at a local coffeehouse on Thursday, November 15th from 6:30-7:00.

Marcy Westerling will read from her works on Livingly Dying, a phrase borrowed from the late Christopher Hitchens.

While the content may not seem like date night material, it will be an honest chance to walk with one woman as she faces a terminal cancer diagnosis – including the positives of having a husband and community that walk every step with her.  Cancer is epidemic and dying is a given for all who enter this world.  Why not look behind the curtain for 30 minutes?

They have seating for 50 so please spread the word!

Rain or Shine Coffee House is a bright, cozy space at the foot of Mt. Tabor. 5941 SE Division St -
Portland, OR 97206

Another Failed Chemo – Goodbye Doxil

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

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

1st Recurrence & 3rd Chemo Drug Tried

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

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

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

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

love, as always, 

marcy

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

Testing 1, 2, 3…..

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Despite my  intent to write a caringbridge update in December then January, it has stayed a task I avoided as I wondered both “what to say? and “do I have to?” Thoughts I tend to have when I actually have few thoughts. But I know that many of you wonder if my bags are packed for Philadelphia. They are not quite yet.

2012 was a tough year in my treatment experience, largely because I never believed my treatments could be so unsuccessful. (I can state that “I am terminally ill with a hard to tame disease”, but that does not mean that I really accept it myself.) I went from one unsuccessful treatment approach to another as some tumors responded but new tumors grew. By the summer I was on a chemo that actually burned my butt, feet and hands – very surreal. You accept it in the moment because it is the reality but when you look back it’s like, “Wow. Really?”

My current treatment is considered easy to tolerate and it is. I expected to ‘graduate’ in December and was surprised then demoralized when the retrospectively obvious was stated for the first time – I should stay on this chemo for the complete 6-8 cycles (eg months) if it might be working.

This delays my start at UPenn. And the easy to tolerate chemo routine becomes less easy to tolerate as the effects are cumulative.  I find it harder to breathe when active, always unnerving. (The doctor says my lungs are not filling w.fluid – very good news.) Breathing hard after walking is just another side effect of treatment. The other morning when I biked to chemo, parked and got on the elevator with a security guard, I could see his concern at my heaving breathes. I hate that. It took almost 10 minutes to settle down so that I could talk. The same thing happened yesterday when I walked to a store. All Fall I tracked my hair loss to see if my thinning process would, in fact, lead to baldness. I felt triumphant as I still looked ‘normal’ in December but can I stall the effects of my hair loss for an entire 6 months? (You may wonder why would I even care. Well, I care.) Then there is the start of neuropathy in the fingers and toes.
I know the escalating breathlessness will disappear post chemo but neuropathy tends to stay a permanent companion. I accept these side effects of trying to stay alive, each of us has a similar list of barriers and struggles, but in the weeks leading up to a scan (vs the great cancer vacations of months like October and November) I find myself less patient with the equation. “All this and I’ll probably still fail my ct scan!” Such thinking happens. For those of you positive-thinking-all-the-time folks, please know that I have assumed the best when having most of my other ct scans and gotten walloped with bad news, so honestly, I dont think I am growing my tumors by wondering just what all my chemo distress is accomplishing. I have even added in two days fasting before and after each weekly infusion since early research shows it can reduce side effects and may amplify the chemo focus on the cancer cells – I am working hard to tamp down my tumors.

The delay frustrated me. It continues to frustrate me because I have no desire to spend my summer months traveling back and forth to Philly. This timeline should have been fairly obvious at the outset but communication and leadership is all the more challenging when you change providers and have a long distance trial you are trying to accommodate. Mainly I stay frustrated that so much of my life is about staying alive and the suspended state it requires. I vowed to find my footing in 2013, reclaim my life but building a life beyond the constants of daily health care regimes is just not that easy for me. I have only so much energy. I have only so much vision.

I have deemed myself in a malaise and thus exempted from much more then putting one foot in front of the other this December and January. But you wonder and ask what is going on with UPenn, which I appreciate. I will be scanned in late January with results on the last day of the month. Because my blood work is not an indicator of what is going on inside me, this will be the first real check-in since early August. If it shows no new tumor growth, I will stay on the taxol/avistan combo through mid-March or possibly early May. At that point, if declared by my doctor to have had an ‘optimal response’, I will then transition to the UPenn trial. UPenn requires seven visits to Philadelphia in a tight numerical sequence. (And forget about that corporate jets transportation.) I am still not ‘in’ the trial until I physically go there, get approved and sign the paperwork. Until then my slot can go to the next candidate but as I have worked for 18 months to qualify so has every other candidate faced these barriers. While it has been tempting at times to give up on this trial, my heavily treated body is no longer eligible for most trials. And UPenn stays a dynamic place for cancer break-throughs.

In the meantime, I stay distracted with the endless paperwork of being alive. And I scheme (thus far unsuccessfully) about a winter trip to somewhere warm and sunny. Or just warm.

Malaise – it’s a lovely word that hits the spot even when you are not quite sure what it means. It is “a general feeling of discomfort, illness or uneasiness whose exact cause is difficult to identify.” Okay, i probably dont qualify for the latter part of the description but I still claim the malaise of December and January and do not see it as a negative thing. I had lovely holidays. I enter 2013 with hope. And that sense of malaise that sits with me like my knitting, well, I think it is just fine for now.

Thanks you as always for the many kindnesses that keep this journey just fine for Mike and me.

warmly, 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

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