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.
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.
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
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!
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.More 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!
Marcy ~ You are the most creative person I have ever met!
I am so happy to see this is working the way it is – blessings on the next leg of journey – for a world that welcomes you and opens up, rather than closes down, as is so often the case with cancer. Blessings, blessings, blessings!
Marcy, have reached out to some of my CA ovca sisters. If anybody can help I’m sure they will either contact you directly or I shall get a message to you. My very best wishes to you.
I am always amazed at the kindness of strangers, but it also restores my faith in humanity. 😀
Marcy,
I have passed this along to relatives that live in California. No promises, but maybe they know of someone who can help.
Bill
Marcy, your blog is amazing.I love your writing, honesty, and ability to advocate for what you know is right for your health– all while feeling the pain both physically and psychically of livingly dying with ovarian cancer. i am trying to flex a similar set of muscles in my actions against the ovarian cancer that turned my life around starting 8/2011. it isn’t easy at all. the melding of traditional cancer care centers, and alternative care don’t jibe. i see my docs at my traditional hospital, i have a naturopath, an acupuncturist, a reiki person, a cranial sacral massage person, a nutritionist…and — all in different places. there isn’t communication between my gyn/onc doc and my naturopath and they think very differently about how to get back into remission. it confuses and angers me. i am educated, and was an oncology social worker before my diagnosis, and yet i seem to still defer to my western medical team.
i have stage 4 clear cell ovarian cancer. i have done carbo/taxol, had total debulking, and got total abdominal hysterectomy and oopherectomy. i was diagnosed in 8/11 and so far my tx has been in boston which i live outside of. i read your entire story last night. hours of reading. i am fascinated and saddened by your twists and turns, and the way you have chosen to document this journey. i have also been able to do some documentation through a few organizations about my journey. i did a talk for about 20 friends where i was able to tell my story, it was organized by mass general hospitals healing sessions program. they made a video tape which i will have forever, or my family will. it was kind of like the idea behind NPR’s story core. I had an outline and filled it in and got help from the program as well as a wonderful friend who is an artist.
it combined me talking and i shared a few painting i have made since diagnosis. i am not a painter, but have used this medium to express myself with my artist friend who works we me to develop this
part of myself. i won’t share more here, but i would love to talk more about your journey and mine.
i am now in treatment with carbo/doxil after my first recurrence happened this spring. my cancer is in my lymph nodes, it hasn’t gone to any organ at this point. (knock on wood)
it sounds like you have been many places, and continue to seek the best care for you at this point.
i admire your fortitude. i have considered going to see a dr. block in chicago as i like his Intergrative
Cancer approach. i live no wear near there and have responsibilities for my two daughters who are just 11. i wonder sometimes when it is time to really immerse myself in an environment that feels more holistic. i have created a really great group of healers, but i am conflicted by the naturopath who wants me on hundreds of dollars of mushroom extract and other herbs and swears by their efficacy. his blood tests can only be done at certain labs, and all of it adds up to so much money. it isn’t that i think he isn’t worthy of what he has discovered. he is a molecular biologist and ND and the way he explains things to me is amazing. i truly have learned a lot about how cancer cells work.i can’t afford all that he wants me to do. my western doc would prefer i do chemo with everything but
not all of the herbs. i guess i could push her harder. the stamina it takes to follow the herbal route with all of the mushroom tinctures, etc was hard before i recurred. hard to know where to put money, resources and energy.
mostly just wanted to introduce myself. i am liz. i hope that the beauty of california helps in your healing process.
all my best,
liz
lizjschwarz@gmail.com
YeeHaw Marcy! lucky mariners (?), together your lives will be enhanced. blessings and much love, carol with a smile and a nod
Fantastic news that you have found a place. I think you’ll love Mill Valley. Best always – Abby
Reblogged this on So, I Read This Book Today and commented:
Livingly dying….. Marcy is a shining light of positivity and hope for anyone who feels that being terminal means giving up. What a wonderful attitude! Bless you, Marcy!
Yay for networking! So grateful for you to have made new connections with people who are in a position to help you with your ongoing needs. Thinking of you always. Hugs.
Hi Marcy, blessings on your Tuesday journey back to Marin — fyi I have a friend in Mill Valley. congrats for amazing networking!!!! lily
Have you tried Pilots for Patients? I have another cancer friend who has used their services. Not sure which areas of the country they fly, but it might be worth contacting them.
http://www.pilotsforpatients.org
Thanks for the tip.
warmly, marcy http://livinglydying.com/
On Aug 30, 2014, at 8:11 AM, livingly dying wrote:
WordPress.com
Hi Marcy,
I’m in nearby Sonoma County and let others in the North Bay Area know about your needs.
Please add me to your networking list.
Sending so much love, light and admiration.
warmly,
Stephanie
ssugars234@aol.com
Wonderful! It would be great if this allowed us to meet!
warmly, marcy http://livinglydying.com/
On Aug 30, 2014, at 8:17 AM, livingly dying wrote:
WordPress.com
Hi Marcy, Again you amaze me for all the reasons everyone else has noted. I have a friend who lives in Sonoma who knows about the trials (not the clinical ones) of cancer. I will forward your query to her – she may have connections in MV area and I know she would want to help. I’ll let you know. I am going back to LA where my sister will start full brain radiation soon. You’re always in my thoughts dear amazing Marcy.
Good people in Marin County. I went to high school in San Anselmo, just outside San Rafael. San Domenico. That was 44 years ago! I’ll bet it’s still so beautiful, nestled under the eucalyptus trees. Wishing you the peace and community I found there.
Marcy, as always you amaze me with your determination to find exactly what you need, and your ability to make adventure out of the whole thing! I heard about this organization and wondered if you have contacted them in your quest to get help with clinical trials. http://www.lazarex.org/helping-you/looking-for-help
Great lead! Marcy Westerling http://livinglydying.com/
Marcy, my dear cabin-mate, I have a few friends in the bay area and have sent out your plea for lodging. Keep us updated because we all look forward to your words of wisdom. You are going through life and tackling this survival business as many of us will never know. If you come to Denver for treatment you can stay with me for as long as you want.
Marcy, so sorry to hear of the difficulties with Compass…..after OHSU. However, glad you found some resources in Marin County. Seems I recall that you would be able to begin again in the UPenn trial (Phase 2) late Fall/Winter. Is that still the case?
That’s still the plan! Ca 125 now down to 20. Working to see 7. ; )
warmly, marcy http://livinglydying.com/
On Sep 4, 2014, at 11:03 AM, livingly dying wrote:
WordPress.com
Great news!
Marcy,
Have you found a place in Mill Valley yet? My sister lives there and has a spare bedroom…let me know.
Warmly, Lisa