Angels and Okra

Since June I have survived with the help of strangers and a hardy core team – angels all. As I careened from triumphant retirement from an arduous (how that definition keeps changing!) long distance clinical trial year to an unbelievably short cancer vacation interrupted by a truly shocking cancer surge, I found my situation too demanding to cope with my many friends’ confusions. My rollercoaster ride, after four years, seemed to jar many friends off the course back in June just as my own vocabulary and capacity for explaining what I have always expressed as a terminal path, diminished.

It’s a challenging ride.

My coping attitude was, “Seriously, YOU’RE confused?”

I dropped seeing folks. I didn’t have the energy to support external confusion about my saga. I knew our mutual love was as strong as ever but that we now had contrasting needs. I couldn’t educate beyond my blog right then.

My world was reduced but then re-expanded. A trusted core stayed present and new angels stepped forward. A neighbor in a basement apartment next door started leaving flowers and cheer. Old friends agreed to host me with no hesitation as I popped up needing a bed and a toilet to puke in – definitely not an ideal guest! – and the simple yet extraordinary lengths they went to, provided deep solace. The New Yorkers on buses and street corners who saw my moments of need and were there or just stepped aside.

When I relocated to Marin County, California for care I knew NO ONE and, worse yet, this was not a community (think suburbs and small towns) that you can operate in on your own. Cars and money are required. I composed a five-sentence plea for support, sent it off via facebook and found myself adopted by a new crew of angels. They asked nothing from me and have been driving me,

Meet Charlene, a driver with style.

feeding me

Meet Sylvia – cooking another healthy dinner!

and loving me ever since only expanding the amount of love they offer with each visit. I truly enjoy my treatment visits to Marin County!

This last trek, courtesy of Angel Flight West, volunteer pilots flew me from Portland to California! These new angels have eased my enduring efforts to make treatment into vacations. Who has time for pre-treatment nausea when you are touring the vast and gorgeous landscape of Oregon and California at 8,500 feet? How grand might you feel stepping off your private plane, onto a small tarmac, bypassing the germs and chaos of commercial air travel, to find a friend with car feet away ready to take to you the next leg?

Cancer may suck, but angels’ rock and roll!

The power of strangers is they accept you as you are. You can either take them in or walk right by depending on your own needs. They aren’t bogged down by the complexities of your saga. It’s very simple. You have a current need. They never tell me that they just can’t track where I am when. I am there. In need. Case closed.

Thank you, Angels, new and old, obvious and hidden, you keep me going.

How does okra tie in with angels? You would know right now if my new exhaustion levels didn’t force the okra story to be tabled to the next post. But stay tuned; it’ll be worth it. Okra always is.

Advertisement

Adopt Me, Please? Chemo Fanny-pack Included.

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!

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!

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!

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…

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!