As these shorter, darker days hurtle us towards the close of 2014, it seems time to give an update. Just how am I staying alive these days? And what are my next tricks, if any?
Since late June of 2014 I have been doing several days of chemotherapy every other week. I am on a cocktail called the Bruckner Protocol that employs a varied mix of chemo drugs (often off label meaning FDA approved drugs but not approved for my form of cancer) in lower dose combinations that intend to intensify results without the toxicity. It has shown some success with hard to treat cancers. Using the protocol with recurrent ovarian cancers shows short-term results but there are challenges maintaining disease stability. It is no magic wand.
The doctors at the clinic are confidence inspiring in their relentless capacity to utilize the latest science to keep patients stable. Stability means a lot when you have untamed, terminal cancer. (Remission would mean more.) Drs Bruckner and Hirschfeld were pleased to hear that I not only had already started immunotherapy prior to arriving at their clinic but also that I was waitlisted for a next step immunological trial to open. I needed the Bruckner Protocol as a bridge to keep me alive. That was June 23rd.
I completed four treatments at the Bronx based clinic in NYC, a hefty commute, transitioning to Marin Specialty Care in early August.
I am just recovering from my seventh treatment in Marin bringing me to a total of eleven 31-hour cocktails.
Marin Specialty Care became my new home when no Oregon facility was willing to treat me. (Thanks Oregon!) I had heard of Marin Specialty Care from the same woman who had initially presented the Bruckner Clinic as an option to track. Inbal was further down her relentless path with this disease when we met. With a young son to raise and a passion for life she was willing to try all options. Inbal blended zeal with research. She reported on the Bruckner Protocol with a journalist’s skill. For two years I saved her notes. When my cancer surge arrived in June I knew exactly where I was headed, and, in fact, flew off to the Bronx within a week.
Inbal lived in the woods near Oakland, CA. She chose Dr Jennifer Lucas as her oncologist, commuting the hour to Marin Specialty Care. Dr Lucas gave an initial no to Inbal when she requested the Bruckner Protocol but when asked to reconsider, Dr Lucas did, saying to me, “Who was I to say no. She and I both knew that I had no other way to keep her alive.” It is a rare oncologist that can set aside traditional doctrine and agree to a more daring protocol led by the patient. Dr Lucas watched the protocol both work and not work for Inbal. (Inbal died this September.) The clinic used the protocol on other hard to treat patients availing themselves of the free advise of Dr Hirschfeld in the Bronx. I arrived in August of 2014 as their first patient to fly in to their small 7-chair facility but patient number 9 on the Bruckner Protocol. Their entire team had expertise.
It has been an ambitious treatment period. Every two-week period I have three/four days in treatment/travel, recovery is a rather fierce three – five feeling lousy days (during which I moan and repeat, “oh my goodness” a lot) and then I have my rebuilding period in which I have daily health appointments and while my physical body is feeling better, my internal blood work is the weakest leaving me in a state of malaise. It is hard. (14 days. 4 days treatment/travel, 5 days recovery, 5 days rebuilding.)
An additional challenge is maintaining a former life! My most vibrant health days are in Marin. There my body is in the best shape of the two-week cycle. Volunteers drive me to the airport, fly me by small plane to Marin, new volunteers scoop me up and bring me to my host family. I am fed and loved and dropped off by the 8 a.m. start of the chemotherapy drip. I am finally unplugged from my chemo pump 31 hours later to rush out the door to the driver who gets me to the Angel Flight, which brings me home. The love and dedication of these volunteers floors me. Their motivations fascinate me and, independently, they have become quite a social circle for my few good days each cycle. The fact that my new home is sunny and mild year round doesn’t hurt. My California days are nice.
My Oregon friends wonder though. I return sick and discharged and barely recover before departure. In Oregon, I am largely a missing person.
All this effort initially showed great promise but back in September we got the first indication that the cancer is working around the therapy. Various tinkering is being tried, timed well as my body refuses to endure additional doses of some drugs. Oxaliplatin replaces Carboplatnum. Avistan is dosed when the stars or protein levels in the urine align. I get every infused anti-nausea med known and yet still, I endure the nausea, the nausea, and the endless nausea. Until one morning it is gone and much of my memory of the darker hours.
What is next? Just this week the University of Pennsylvania released the new T Cell Depletion Protocol that I have been on the waiting list for since June. The first woman will be accepted in January, with a new woman started each month with dose escalation every third patient. When will I be called? Will my weakened body still qualify? And can I keep my cancer calm until that moment?
I think I can. That’s what this whole six-month slog has been about. For now I count down to my next few spa dates in Marin, hoping my new friends are well and the sun will be out. That is far enough into the future for me.
After reading your ‘post’ today- it came to me: Maybe I should shoot you a copy of my latest ‘send-out’- having to do with ‘Healing Cancer’. So, in my next email to you, I will.
Granny Earth, N.D.
“She thought she could, and so she did.”
Wonderful line. These days my thoughts are less triumphant. Maybe I’ll have to work on that. Xo
Cara Shufelt Rural Organizing Project Sent from my handheld
Wishing you strength, courage, and stamina, to stay the course and get into the trial.
I don’t know what to say, Marcy. Thank you seems trite but I do thank you for your eloquent sharing. And I am thankful for the absolutely amazing team of angels whose description, by your magic pen, brings me to tears. I pray that you will be called soon for the UP trial. Peace and love to you.
It is good to know that as loved as you are here – and you most definitely are – you are being well loved and lovingly cared for by all in Marin.
Deep peace to you as you continue in your journey – blessings,
Sending you good thoughts. I don’t know how you do it.
YOU ARE SO REMARKABLE! HERE I AM WONDERING WHY I’M STILL HERE-WISH I COULD TRADE SOME TIME WITH YOU, SO YOU CAN HAVE MORE LIFE TO DO THE WONDERS THAT YOU DO. HOW TO LET THE UNIVERSE KNOW THIS AND HURRY UP! SURE EVERYONE LOVES YOU BRAVE WOMAN. MY LOVE FOR YOU RUNS DEEP. BEAUTIFUL SUN TODAY AND A FEW FLOWERS STILL BRAVE ENOUGH TO BE HERE-LIKE US MAY BE.
PEACE AND LIGHT TO YOU AND I WISH TIME AND RELIEF FROM PAIN,
“…I think I can…” I like the image Marcy – the little train that could. We read that to Ellie trying to help her develop a fighting spirit……I think a better children’s book would be written by you. You are an inspiration for so much, for so many and specifically, for me. love and hugs Marcy.
Sending love for the Oregon days…
Thrilled that you are being lovingly assisted in this determined path to remission. Stay in the light, knowing you are loved.
Sending blessings and love,
You are very much here in spirit. So glad you are getting good care from your large village as you warrior on in your journey. From the heart sending out love, light, healing, comfort, ease, lovingkindness, blessings, prayers, hope.
Everytime I read your blog I am inspired by your continuing battle to endure and win this fight, and realize how easy it is for us to take our lives for granted. Keep fighting. Keep inspiring us.
Thanks for the update and explaining how Brooklyn evolved into Marin. Your adventures sound a bit like the plot line from the movie Interstellar. I’m glad you get to meet so many angels on the way.
Blessings and Love to you and your angels, Marcy. Holding you in the light of the sun and blue skies on the coast, in the sparkling frost too. carol
Take what you can from beautiful Marin. Wishing better days for you – Abby
Love and healing wishes, Marcy.
Yep, the little engine that could…got there through “I think I can, I think I can, I think I can, I think I can…”
Wishing you many moments of joy and pleasure, even in the midst of physical suffering. Your sensitivity is heightened…may be be for good as well as ill.
Wishing you too a clearing route to prolonged survival.
Fingers crossed that you’re first pick for the trial and that it’s helpful for you.
Just this morning read of an herbal formula, Contra Can, in a story about a Tsultrim Allione, a western Buddhist dakinini and herbalist. http://taramandala.org/shop/our-herbal-formulas/
Holding your health stability in my heart and mind.
Sounds like an amazing organization/facility! I wanted you to know that I think you are a really good writer – just the right amount of info and personal feeling but not too much of either. Well done and all the best.
Wow you are such a strong person! I love how you are still so positive and proactive despite what you are going through. God bless you!
I feel for you and my other friends struggling with this horrible disease. You have given so much to the world, it’s no wonder people are giving to you now in your time of need. Keeping fingers crossed you’ll make it to the next treatment option. Love you.
Loving you Marcy!
I also think you can, and the way you wear your custodianship is like a whole new Marcy-invented way of being-with-illness. The activist at her loom.
You may be a plane ride away but you never feel far away. Sending you love!