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