Living a Life With and Beyond Cancer

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

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

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

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

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

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

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To Philly and Back!

I got a taste of my possible new normal last week and it wasn’t bad. In fact, it felt a lot like my old normal, a life I did quite love. Facing mortality I am determined to enjoy whatever each day brings, but that attitude can belie a deeper truth of who I truly am and the life I would like to live. I like being engaged, busy, in the thick of things. I have adapted well to being ‘in the thick’ of life on the infusion ward and the acupuncture clinic but there is a bit of guise in that.The week, starting with last Saturday, March 30th, was BUSY. I knew it would be, so trying to ration my energy, I had even asked my dearest friend not to fly out for my birthday party (sigh) fearing a visit on top of big events would be too much. Even with Stephanie not joining us from Minneapolis, it was quite the gathering. People drove in from many directions to create such a mass that few individual conversations happened but oh what a mass of energy and fun – what you would hope for at a dance party.

The space was lovely, the weather beyond perfect, the host team award worthy and a cake that I never got to sample perhaps in an inadvertent boycott of the cutting into such a thing of beauty. The cake was massive and covered with the ‘best of’ photos of yours truly collaged artistically together.

I stayed on the dance floor and despite my fears that my lung capacity might reduce my ability to boogie, I did not return once to the designated ‘marcy rest throne’. It was wonderful dancing with so many dear friends. At the height of the evening some loud bangs erupted. Oops, the accumulated sound had detonated a few wine glasses. It was time to start winding down.

I had a day of rest before flying off to New York City. Two big east coast events had been foisted together without much ease. The first was a two-day conversation closing out a two-year thinking/action project on engaging the white working class in progressive identity. ROP was among four other groups to feature their work. It was a typical such gathering – 12 hour days, an expectation of your mind always being on.

A special needs person such as I is theoretically accommodated but there is only one size fits all participation. Sit up, stay engaged at the table and maybe, if you are determined, manage 8 hours of sleep. Day one, I functioned. Day two, I functioned. Day three, I functioned and I stopped holding my breath waiting for a glitch as my body rebelled. For five full days I functioned just like any other member of the working world. And I loved it. Luckily, I was able to manage quality food and exercise (there was no day that I walked less than five miles – god bless Manhattan.)

The formal meeting ended. I switched to family housing, slept a full 10 hours and had enormous support in the logistics of the second adventure. I awoke at a leisurely pace on Thursday to walk the 3 miles to Penn Station, train to Philly and exit the train to find the one and only Holly Pruett waiting at the top of the escalators prepared to snap a photo to document this moment – after 18 months we were going to walk to University of Pennsylvania in Philly for a medical appointment. We were finally here.

Holly apologized for her ‘wardrobe malfunction’ but I knew she was the perfectly attired companion for my assignment today to prove to UPenn that I am in ideal health. Holly looked young, fashionable and vital, loaning a definite edge to my efforts. She had clearly spent her proceeding 10 hours in Philly preparing to be a tour guide as we walked the mile from the train station to UPenn. If this was to be my new home, I should start learning about it. (Philly is the 5th largest US city, has five major sports teams and a superstitious relationship with where William Penn’s statue resides in the relative height of downtown Philly. There is more, much more, but we hope to have time to share the delights of Philly.)

In no time we were at the stunningly new, open design of the research wing, signed in and waiting for our appointment to start. Both Holly and I sighed with enormous relief when they acted like “yes, we are expecting you.” All the intake folks were like “really, you are traveling here from Oregon?” YES! WE ARE!!!!!!

The person we have negotiated with for 18 months was there in the flesh and blood. Everything started with hugs. The repeating of information, often having a flash of panic, ‘wait, could sharing this disqualify me?’ Meeting the doctor in charge, Dr Tanyi, who like my new OHSU doctor, is both brilliant and communicating to me through a Slavic accent that I have yet to master. With great energy he reviewed the theory behind the TWO (who knew) clinical trials that I was being screened for. Between needing to remind myself ‘I am truly sitting here’ and the accent, even with my great familiarity with the trial theory I know I missed details.

After the physical exam, he declared me an ‘optimal candidate’, posed for a group photo and left us to meet the project lead and work out the details like the dates for my formal signing of paperwork (May 8th), apheresis/dialysis (May 22nd) and the first vaccines over the three days of June 4th, 5th and 6th with subsequent vaccines every three weeks thereafter until I decide to stop, we run out of my tumor or the cancer grows.

I arrived home after midnight last night. I am thrilled to be home and ever hopeful that by choosing to loan my body to the frontier of medical research forward steps will be made in taming ovarian cancer and extending my own life. Formal signing of paperwork will not happen until May 8th but there is every reason to belief that, courtesy of many, I will be enrolled in the Phase One, cohort four arm of this trial. Let’s keep our fingers crossed for just a little longer.

What a week! Thank you all for the great send off.

love, marcy

 

Travels & Work Despite Metastasized Cancer

I have been quite remiss in my postings but as some have noted, less news can be imagined as good/neutral news. Health wise I hope still to be stable in remission. My last blood test in April was my first upward incline of numbers, very scary for what it could portend but too isolated to indicate much yet. I chose not to get another test prior to departing for a month reasoning the most obvious result would be another uptick in numbers walking me out of remission and the best results just kept me waiting for the next test and the test after that eg my new status quo. Cancer vacations are fun and all the more so when combined with a real vacation. I opted for the cancer vacation.

Back in late October 2010 I received an email you never anticipate. It was simple, stating “We’ve begun planning the Open Society Fellowship Reunion, which will take place in Budapest and Szilvasvarad, Hungary from June 7-11, 2011. At this point in time, we’d like to ask you to confirm your participation in the event. “ A part of my life that I had tossed aside when diagnosed was further travel. Travel, especially work travel, is inherently stressful for the body, the correlation between stress and ovarian cancer is more substantiated than for other forms of cancer and it was an obvious item to delete. I decided that I would not travel again. That stayed my thinking norm until this email popped up. My immediate response to the email was ‘Hell yes, I am going!’ And then my travel ban was on weak footing. Thus, in January I traveled to NYC for a rural convening. I returned home to plan a much more ambitious trek that was bookended by two political commitments – the long planned convening of front line organizers to Map the Right up in the Adirondacks and my Hungarian visit to the castle. Wanting to avoid the radiation and stress of back and forth plane travel, I needed to be gone for a month. And thus began the planning for a 32 day journey.

I just returned home late last night from these adventures. I cannot recall a single dull or sour moment. My body, after some initial drama, settled into the adventures. I was able to practice decent patterns although my diet rules dissipated fast. Blue Mountain Center, the retreat site in the Adirondacks that was stop one, has phenomenal food all healthy but they seem not to have gotten any bulletins regarding sugar. Not only did every meal offer dessert but they have clear glass cookie jars offering different home made cookies at all times….they have no one minding the cookie jars which I took total advantage of! And once my sweet tooth was activated little was safe.

My final two and a half weeks were in Hungary where one traveler quipped ‘you could well experience a soviet bloc.’ It’s a heavy diet laden with meats and sweets. Salads are true work to find. My post surgery body is at high risk for bowel obstructions leaving me pretty nervous but suffice it to say, I survived but was eager to return to my magic vegiemix for blended vegetable drinks to launch every new day starting with this morning!

It was lovely being gone and it is lovely being home. Seated here writing I look out on our lush yard, have already walked to get fresh produce and hope to walk over to a friend’s house later today to meet their newly born baby. It’s not been 12 hours and already Kaiser has summoned me for new appointments and tests. The full cancer vacation may be over but I hope to maintain a new balance between my dire diagnosis/prognosis and the lightness and beauty of the world that I get to enjoy.

When I first agreed to these travels I viewed them almost as a ‘goodbye tour’ which was how I coped with my new world order – everything was about closure. As I travelled, though, my commitment to closure faded. I awoke each day and found hours passed before I ‘remembered’ that I was on borrowed time. I intend to stay grateful for every moment I have but my travels returned me to the living as I made new commitments, planned for a full future and hope, as we all do, for the best of luck and medical care to keep me alive.

I would share more details of the travel but for now, as a woman with many commitments, I had best get back to work.

With love, marcy