From Gone to the Front Page to San Jose – in one dizzying week

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I was under 10 when Dionne Warwick belted out her hit song, “Do You Know the Way to San Jose“. Clueless to meaning, I could carry the tune. Almost 50 years later it might become my theme song of 2015. A clinical trial in San Jose seems to have accepted me. My first forays into California have left me wondering if I am not destined to rediscover myself as a California (middle-aged) babe.

Four months ago I sent an anonymous appeal via social media to locate nice people in Marin County, California willing to adopt me – sight unseen. I could have been a stalker with crazy intent. My appeal went (semi) viral (https://livinglydying.com/2014/08/29/adopt-me-please-chemo-fanny-pack-included/) and, I was overwhelmed with offers. My every other week treks to chemo in Marin have become a highlight in a rather small life and a source of well justified pride for the local community. The local paper agreed to do a story and it came out on the front page the Sunday of last week.

http://www.marinij.com/marinnews/ci_27036357/marin-residents-adopt-nurture-oregon-cancer-patient

Front Page

Front Page

(Saturday I had keened over my disappearance on LivinglyDying.)

What I didn’t imagine is the story would be my good bye to this stage of my cancer journey – every other week chemo in Marin County.

Monday night, November 24th, as I prepared for the start of chemo the next morning, my daily Google reader listed international media stories from the last 24 hours on ovarian cancer. A press release from San Jose caught my attention. http://sanfrancisco.cbslocal.com/2014/11/23/san-jose-hospital-pioneering-new-treatment-that-heats-kills-cancer-cells/   I recalled reading about this theory a few years back and hoping I could stay alive for its use. Little did I imagine that I might be among its first five patients!

Tuesday night my Marin host family and I spent and hour plus on the phone with the doctor leading up this new clinical trial. Wednesday, from my chemo chair, I started wading through the morass of details. Every day this week I have moved the ball forward at a dizzying speed – grasping the new trial risks and what it would require.

I would need to relocate to San Jose images-1so that I could have surgery every 28 days and report in for weekly mandatory tests and exams. Before I could even figure out my next steps a zealous friend had me adopted by the parents of a wonderful colleague. (They pick me up at the airport this Monday to whisk me to the hospital for intake exams.)

While pushing forward admittance to the trial bigger questions needed to be resolved. Would I lose my position in the U Penn Part Two? (No, it amazingly turns out.) Was I truly in a dire enough position for such dramatic intervention? (Cancer showed additional growth in Thursday test results.) Starting this trial seemed increasingly self-evident. But then, swoosh, I was looking at dropping chemo this week, the 9th and 10th ,  and doing initial surgery December 17th. It sounded exciting until I realized I would have hospital visits December 24th  and 31st. No, 2015 will be a challenging year to survive. I need to travel to Dubuque Iowa to see my mom not able to travel to me. I want a Christmas 2014!

images-3

So, my surgical start will probably be January 5th – reporting in for final pre-tests December 31st (grumble, grumble). The details of the trial sound sobering. But they are less sobering to this person undergoing 31 hours of chemo every other week. The prospect of getting my brain back is exciting – its been fuzzed up by drugs. The prospect of rebuilding, or less undermining, my body is exciting. I take seriously the risks of being under general anesthesia for four hours every 28 days and having all my blood removed and heated for two hours to a temperature of 107.6 but these details cause me minimal pause.

My life as a lab rat,  images-4undertaking early risk for a bit more time, tells me this is not worth fretting. Forwards I go. Goodbye steroids! Let the bloodletting begin!

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About marcy westerling

I am a long time community organizer with a passion for justice and founded the Rural Organizing Project in 1992. Derailed by a Stage IV Ovarian Cancer diagnosis in spring 2010, I have stayed in treatment since then. I am learning how to embrace livingly dying and hope that by starting a Phase One immunology clinical trial at UPenn in spring of 2013 I will have more time to find the sweet spots of thriving while terminally ill.

33 responses »

  1. WOW, Marcy! You are amazing!!! Nothing else to say! I love you in the purest sense of the word. Your painted rock (for which you “ruined your eyes”) sits on my coffee table still and reminds me of you daily. Every ounce of positive energy coming your way!

  2. This is a bold move, but if I faced your limited options, I’d totally go for it. I’m looking forward to your report in 2015. Get strong in the meantime! And Happy Holidays.

  3. Good for you, sounds very exciting! I’ve read about this, and think–could be wrong–that someone else on inspire.com, had an interview for this trial as well? People like you are the true heroes in the fight against cancer, my oncologist says so, too. “Don’t thank me he said, I just pick and choose the drugs you take. It’s the people who risked their lives to make them available who are helping you.” So, thank you VERY much for your part.

  4. Marcy – you give us ALL hope and I mean around the world lady .. to be among the first 5 in this dramatic trial … is just mind crunching. You can do this, Marcy!!!
    Cliff

  5. Your adventuresome spirit prevails. May you be blessed with clarity of mind, healing of body, and ever-present angels for your spirits and holidays that you enjoy wherever you are.

  6. Marcy, every time that I read your emails, I am overwhelmed with your energy and spirit. I have shared them with my family and with a friend who has had cancer and with close friends in WCCHD.
    Love to you and to all of us that cherish you in our lives. The words are hard to find but they are deep in my heart.
    Peace, Love, Joy…the same warm wishes but always the hope is new!

  7. Wow, this is thrilling! At least it’ll be a different kind of “thrill” than the chemo 🙂 Happy Holidays to you and and your far-flung family!

  8. Grab Webster’s, and look up “brave”. Yep, that’s your picture you see, looking back at you. Sure, soldiers, police officers, and firefighters are also decorating that page in Webster’s, but it is your face that looks out at us, the epitome of quiet courage. It takes an extraordinary person to have all the tests, procedures, and chemo you have endured, and still go back for more.
    Your spirit is just astonishing. You should be very proud of the way you have handled all of this. A true role model for survival.

    I love you more each day. Sending you plenty of hugs and wishes. Always!

    Gigi

  9. Holy Cow! What a roller-coaster ride! And this is such a WEIRD but plausible treatment–and you already knew about it and were waiting for it to happen–and you’ll be in the first five! WOW! May your time with family be blessed and your new treatment be the real thing! Blessings to you, dear one.

  10. Hopefully one of these experimental trials will work for you and add many more years of productive, happy life. You deserve them. Hope you do get to spend Christmas with your mom. We’ll be thinking of you (as we always do), but especially so during this holiday season. We are so glad you’re here to celebrate another year on earth. Love you.

  11. Marcy, You are one very BRAVE lady that inspires us all! My thoughts and prayers are with you. Sending you Teal Hugs!

  12. And indirectly you are doing this for us. Thank you for pioneering such treatments so we, and our future sisters, will have a better chance. You are absolutely brilliant getting information on these trials and never being daunted by what seems to me impossibilities. Can you possibly get a TED spot, get more face time on TV and bring in more $$$ for your cause thus benefiting more OC women on a much larger scale? You’d be the ONE!

    • One exciting thing about a chemo break is the chance to regain being active and engaged. The last 6 months have been a tad too hard (on top of the other four years of treatment!) Yes, this will be hard too, I am sure. But I am also quite excited to take on real projects! Maybe even a ted talk. xo

  13. Marcy , I have been following your blog for almost a year now. You are such a brave and inspiring person. I admire your courage and your adventurous spirit. I want to thank you for helping further OC treatments. I have learned a lot from your blog. Best of luck with this new treatment. Enjoy a beautiful holiday season. Namaste~ Barb

  14. You never cease to get me fired up, dancing with excitement, laughing at your images, hopeful when you ask and angels respond. Have a beautiful Christmas with your mom and Success in 2015. Yes to a ted talk, I love to listen to you. l’Chaim with love, c

  15. This is from a fuzzy brain?! God, Marcy, this is incredible! You are the ultimate social networker — and organizer!! Way back when, you never could have imagined you’d be providing leadership as a cancer lab rat! Life takes strange turns. And, thank the powers, life keeps on for you! much love, j

    • I love you, Marcy, and certainly do think of you often, more than you’ll ever know. I have shared your feelings and your written words with friends and with my family members.
      Peace, love, joy, the same warm wishes but always the hope is new.

      The way you express yourself is breathtaking. It also reminds me of the quote,
      “Tell me, and I will forget. Show me, and I may remember, Involve me, and I will understand.”

  16. Marcy, I suspect you are actually immortal 😉 Every time the very last option appears to come to a close, a new option opens up. Amazing. And wonderful. So happy for you.

  17. Hello Marcy, What a whirlwind for you! Your brain may have been fuzzy, but it sure sounds like you are clicking now. I hope you had a wonderful Christmas visit with your mum, and that tests on New Year’s Eve didn’t cramp your style too much. I love your little picture of the lab rat, although it doesn’t do you justice. Waiting to hear how the first treatment goes, and wishing you all the good fortune in the world.

    • Hi Marcy,

      It is always so very good to hear from you and the update on your life, treatments, and most of all—- knowing how you are!!!!

      I do think of you often and share your comments with my family and a good friend of mine who has fought cancer in her past.

      Here’s to a 2015 filled with peace, hope, joy and love!!!

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