A Big World Made Smaller

Where are Jersey, Tobago and Ghana?  Courtesy of Wikipedia I find answers. 

A. Jersey is a British Crown dependency just off the coast of Normandy, France.

B. Tobago is located in the southern Caribbean, northeast of the island of Trinidad and southeast of Grenada.

C. Ghana, officially the Republic of Ghana, is a sovereign state and unitary presidential constitutional republic located on the Gulf of Guinea and Atlantic Ocean in the Africa frontier of Sub-Saharan Africa.

There are people impacted by cancer in each of these locations, not surprisingly, alas.

       My accuracy in geography is weak. A shower curtain world map entertained me for years but I still failed to orient myself much better. It is a big world with almost 200 countries, shifting borders and new names. What I know is that everywhere on this globe matters, as does each individual. And that everywhere there is life there is also cancer.

       I set up the blog LivinglyDying in June 2013 motivated to share my experiences participating in a Phase One clinical trial. The fact that it was an immunological trial at the top rated University of Pennsylvania with early promising results meant it was on the cutting edge of possible cancer breakthroughs. Ovarian Cancer has not seen a shift in its mortality statistics in 30 years – any breakthrough would be a big deal.

       I did not enter this trial to be a good citizen. I entered it as my best bet for staying alive awhile longer. Such self-centered motivations did not mean I couldn’t ‘share the wealth’ by adding a public communication loop. I set up a blog during a week when acute hip bursitis had me able to do little. It was a distraction versus a well thought out new project.

       I make an effort to post weekly, be modestly engaging and use different content angles to meet the varied interests of readers. Friends, family and colleagues were the first to enroll, motivated to track my progress. I wanted content to be good enough that they might share the link with other’s coping with mortality or cancer or just the wonders of life. As the tagline indicates, the blog promises “notes and essays on daily life with terminal cancer.”

       I learned about blog culture and the excellent tools that WordPress provides so that innocents like myself can build a platform that is read. Little by little, I was found. (I am still waiting for The Post That Goes Viral to bring me instant fame as was so well made fun of on Showtime’s series The Big C. The truth is many, many people blog and many, many people buy lottery tickets – the odds of making it big are not in your favor.)

        I stay mesmerized by my stats page which allows me to study not just the number of visitors and the different places on the site where they spend time but also which countries they call home and what entry points allow them to find LivinglyDying. I am often amused to find search terms like ‘Marcy Westerling’s Obituary’ as the connection to the blog. (Yesterday someone entered ovarian cancer party supplies and found the blog!) More common are search term entries like today’s query, ‘I am dying of cancer’.

       Most of my visitors stumble upon the blog in desperation – they have received their own terminal diagnosis and they want to feel less isolated as they learn how to cope. People from 58 countries including Jersey, Tobago and Ghana have spent time on LivinglyDying. There have been over 13,000 visitors and while that still ranks me as a small potato blog, I hope that in the five months of my blogging visitors may have found some support and useful information.

       Thank you for being readers, for spreading the word. If you are healthy, thank you for being brave enough to co-mingle with those that are not. For those consigned to this sorry path of terminal illness, thank you for reaching out and for suspecting, as I do, that there might be some magical power in being connected and in being emboldened by the notion that in 2013 we can be both terminal and quite lively and that maybe, just maybe we will see our illnesses become chronic versus terminal in our lifetimes, especially if we can make the world a little smaller, share our resources and make every person and every community counts.

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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.

Princess Warrior & Positive News

For the first time since October of 2011 I have a ct scan that shows no sign of disease progression. Phew! (There was disease reduction but it is unclear if that was active cancer or dead tumor dissolving.) Stability is the name of the game.

If I can stay this way for two more four-week cycles of weekly Taxol, I would graduate March 14th, have my next ct scan on March 25th (aka my birthday) and head to UPenn starting the first week of April.

Many, many ifs but many fewer then we have hurdled over in the last 18 months!

I am a little numb after an intense weekend retreat on the topic of cancer, the test and the mind-fucking countdown to test results. But after a night of rest, it will be a good time to party.

I share a photo of an imposing wood carving entitled Princess Warrior that is a museum quality wood carving on loan to me from a dear friend who showed up with it one day. Her partner died in less than six month’s time of stomach cancer in 2008. He had left a great job to become a self taught master woodcarver despite the calling offering less pay and no health benefits. He died content with his choices. Princess Warrior was charged to protect me. I feel protected by my beloved partner, my friendship,political and family circles and now this defiant art. (Let alone the swaying prayer flags of love).

2013 is the year I intend to move my cancer from center stage to being just another strong character among many in my life. Towards that end I am thrilled to be heading to Texas in early March to train up the (first ever) convening of national anti-fracking leaders on rural organizing!

I don’t hate my cancer but I have resented deeply the way it has narrowed the scale of my world and activities. But watch out! In December I coordinated a salon on the privatization of mail services. I am back doing more regular support planning with the great gals that keep ROP vibrant. And I am thrilled that my first trek to UPenn is actually bookended on to an existing NYC meeting set up to better understand the work of the ROP. Sarah Loose and I continue to plod forward on our organizing manual. And much more.

I may move the body slowly, focus the brain with increased effort but I am alive in this world and enjoying that gift.

Thank you!  xo marcy

Sometimes there is a Shorter Straw Yet

I suspected I was reoccurring when my numbers did a jump from 13 to 20 in August but expected it would stay microscopic for awhile longer. But with my ca 125 at a mere 30 right now, I have visible cancer in lung and abdomen.  In fact, we now know that it was there in July but interpreting scans is a tough art.  So I now have recurrent metastasized epithelial ovarian cancer probably platinum resistant. Still stage iv and still grade 3 – the worst in all categories now. An odd accomplishment.

I am very fit and eat well. My 2nd opinion doc had me add in weights so I feel ready for the onslaught. But I am sad. (Especially about loosing my hair again.  And dont even dare utter some lame positive spin cos there is nothing positive about being made bald by drugs to me.  Especially when it does not even cure you.)

We are looking at radiation and surgery but chemo stays top starting priority.  (Interesting note, my friends did an international search for doxil and found it everywhere but this country, even Canada despite their stories of being impacted. So I am more confused then ever by our supply lines crisis.)  I am on a wait list for the drugs to be available.  If we can’t get them I relocate countries or take next best option – I would probably do the latter. We meet with surgeon on Monday to assess what we can cut out.

It’s bad but it was bad at diagnosis.  I started with a 10% chance of being alive in 2 years.  We just do what we can.  As my oncologist likes to note, it’s in god’s hands.  Right now I tend to agree.  But I am operational today and so off to Occupy Portland because Big Pharma + Wall Street = No Drugs and so much more.

Thanks for lighting candles that hold Mike and me in your thoughts.  I think we need them.  love, marcy

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