Home Again

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After 12 full days on the road this September, I am quite happy to be home as an early Fall storm gusts outside. The travels were bookended by two appointments at UPenn.  My second and final apheresis pumped out then returned a full 15 liters of blood through the jugular vein in the neck.

Aphereis Blood Necklace!

Aphereis Blood Necklace!

A Dendritic Cell

A Dendritic Cell

This process allowed extraction of my now theoretically educated-via-vaccines dendritic cells. I did well but had a lot of vertigo over the next week as my body recovered from such dense draining. The dendritic cells were hurried off to the lab for storage until I enter the Phase Two section of this trial.

And I hurried off to vacation. First stop my brother’s rural home in upstate NY in the small town of Freeville outside of Ithaca. There I got to catch up with family, enjoy some stunning weather and a few kangaroos and emus that are part of my brother’s ever creative interests.

Bro & Kangaroo

Bro & Kangaroo

photoAfter that lovely time, I was dropped off at a retreat site in the Adirondacks. We were greeted with the edict to ‘turn off your cell phones’ as we were now in a place of contained and sustained calm to allow the artists in residence to complete their projects.

Mike and I were honored to get a short stay with the fourteen others who were there for a month. Projects ranged from fictionalized looks at current day struggles in Zimbabwe and of veterans, to documentary films on things the public needs much more information on. Artists were operating in 4 different studios.  A composer was winnowing down and then rebuilding an opera capturing the true story of a 13-year-old Tibetan nun made prisoner after protesting for her countries liberation. This project particularly moved me for the depth of her trials, her happy current life and the reminder that suffering can be just fine. Several community organizers were a delightful addition not only to our own project but also to the fun as between us we had many shared connections to visit about.photo

In our week there formal readings and presentations from six participants took place. Shared meals, time on the dock and walks allowed ample time for stimulating conversation about the work of all participants.

I opted in to the morning tai chi and quite wish I could still pop out of bed and meet on the dock for the next round of cloud hands.photo

We feared visiting too early for the turning of leaves but the Adirondacks border Canada and had had plenty of cold to start the process – vivid reds, yellows and the full array of oranges, greens and browns unfurled a bit more each day. Breathtaking views in all directions. We arrived to the sound of a loon and the haunting cry stayed a constant for our time there.

Our departure was rude. We left at 4 am with a seven-hour drive down to Philly courtesy of my sister-in-law. Immediately, it was the chaos of getting the right tests in the right order. Despite being determined for the labs to be complete in one poke, I had to endure a second needle to the chest with seven more vials to fill. Grrr. Cat scans are never pleasant and UPenn requires the yucky double contrast for maximum imaging. Done, we had the official end-of-study (not really) visit with my charming doctor. Lacking test results we speculated on the various options, projecting that I would be tracked into the maintenance program allowing me to use up my remaining doses of vaccine (waste not!) but at a more leisurely travel pace of chemo then vaccines once a month versus every 2 ½ weeks. The 10 cross-country treks since this started in April of 2013 have been very hard on my quite run down body. On the other hand, this trial seems to be extending my life.

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13 responses »

  1. Love the photo of you and your brother. The respite in the Adirondacks sounds like good medicine to me. I’m glad you got to have a dose of that as well. Much love.

  2. Marcy ~ so glad you are back home to get some rest after all your travels/travails. You are still on my mind every day. Blessings.

  3. You are such a trooper. I’m happy for you to have had a break and a vacation from all the stress and frustration of the trials and therapy. I continue to keep you in my thoughts. Thank you for sharing your thoughts, hopes, and concerns with all of us. Love you!

  4. Marcy, you are a daily inspiration to Libby’s H*O*P*E* in its ovarian cancer advocacy work. Moreover, you are truly an inspiration to all ovarian cancer survivors who are currently battling this disease. I thank you for the courage and truth contained in your writings. You remain in my thoughts and prayers, and I wish you the very best results in the UPenn vaccine trial. Your approach to writing about the delicate (and all too often unspoken) topic of late stage ovarian cancer is as groundbreaking as your cutting-edge immunotherapy treatment. It appears to me that you have found your voice with the perfect combination of heart, mind, and spirit in your weblog. Keep the faith and please keep writing.

  5. Hi Marcy,

    Thank you for continuing to write of your journey with cancer, immunotherapy and your resilient spirit. You are a wonderful writer. And, you are an inspiration to all of us!

    I want you to know that your writings are not only filled with hope because of your participation in the immunotherapy trials but also wonderful reminders of how incredibly healing the natural world can be. Your writing today, of spending time in the Adirondack’s, the loons, etc., reminded me of something I once read at the beginning of this journey….. “healing from cancer is not only about healing the body but also about healing the mind.” Thank you for that reminder.

    Enjoy this nourishing rain that we have been receiving over the last days! I look forward to your next post.

    Sarah

      • I’m continuing to doing well, Marcy. Thank you for asking.

        Yes, I agree. Both our bodies and minds are tasked with a big job of healing from this disease.

        Amazingly, your writings continue to take me on such a wonderful journey of past memories….my childhood visits to Philly….plus I went to graduate school in Buffalo so have spent wonderful times in the Adirondacks, Finger Lakes, Maine, etc. Your descriptions of the Fall colors and particularly the loons spoke so vividly to me. After reading your post, I actually went on to ITunes and purchased a CD from the 80’s ( a tape at that time) that I purchased on one of my many trips to Maine when I lived back East but lost over the years…..Sketches of Maine…. by William Sullivan. Beautiful solo piano….along with the wonderful sounds of loons. Funny how we forget. Thank you for bringing those memories back to me in such a vivid way.

        So you are going on maintenance. If you don’t mind my asking…..that is good, right? Or is it a random assignment?

        Once again Marcy. Thank you so much for sharing your experiences of this journey with all of us.

        Fondly,

        Sarah

      • I think maintenance is the best I can get. I still await the official results of the ct scan but if I am reduced cancer or ned maintenance is the obvious choice. I could drop out but after working so hard to get the personalized vaccines, why would I? But maintenance does not allow deviation so, for example, I would *love* to stop avistan but that is not an option. I could ask to go right into phase 2 but a. there is a wait list and b. why rush to that when i want to proceed methodically through each stage of life extension. Or that is how I dope it out.

      • Thank you for taking the time to further explain your progression through the trial to me, Marcy. Being assigned to maintenance sounds like a good indicator to me…..but with a few bumps in the road, of course (i.e. the avastin issue). I really believe that immunotherapy is the key we’ve been looking for. Look how it’s working with melanoma…..and just this morning I read of a new clinical trial showing an immunotherapy success with lung cancer. As my doc has said to me regarding this paradigm shift in cancer research…..”every day we are getting closer and closer”. I do truly believe that.

        I like your decision making approach, Marcy. Hang in there!

  6. Hi Marcy –
    Glad to read that you continue to see the blessings in your trials while admitting the struggles in them.
    On another topic – I just moved out to Waldport. I also recently became a practicing Muslim. My folks, who live in Newport, were worried about reactions I’d get by folks when wearing my hijab. I understand their worries, but as I told them – Waldport is less scary than being detained by the Israelis (which I was one long day). As I told Jess Campbell I should have started my reassurance to my parents saying “Let me tell you a story that began 21 years ago by a woman named Marcy..” While I’d never be worried about wearing a hijab in any rural area, with the ROP network I feel like people have got my back and all I have to do is call Jess and ask for some names if anything activist-needy enough were to happen (it won’t). Thank you, and all those who helped you made/make it happen. 🙂

  7. I am so happy to hear of your retreat. So needed. You have endured so much. I hope it brings you much more time and us much more time with you — and to benefit from your good work and creativity. xo j

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