Cone of Happiness

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It is with great relief and gratitude that I close out a year of arduous and, possibly, effective treatment treks from Oregon to Philadelphia for my recurrent stage iv ovarian cancer.

Cone of Happiness

Cone of Happiness

I first arrived at UPenn’s Perelman Center for Advanced Medicine on April 4th, 2013. It had taken me twenty months to qualify for this tentative visit. Paperwork was signed on May 8th, Aphereisis #1 completed on May 22nd with my starting round of treatment June 5th and 6th of 2013. On March 12th and 13th 2014 I completed my 15th trek to Philly and my 11th round of treatment not knowing it would be my last. But it looks like that was my closing treatments for the part one of this clinical trial! Wow!

It’s been a complicated month since I lowered the Cone of Silence. It is never easy to interpret test results without the hands-on experts leading you and my great UPenn doc was gone until April 10th. The Internet told me a pericardial effusion was a bad sign. On April 17th, my doc could finally advise me from looking at the actual scans that the size of my effusion, a mere 1-2 cm of fluid around the heart, was not a concern. (Another probable side effect of Avistan.)

While waiting to understand my March test results, my body was increasingly crashing from the burdens of Avistan, a drug I knew I was set to go off, which tempered my complaints. What I did not expect was on April 10th UPenn offered that in lieu of dropping Avistan, they would give me a month off of treatment and add a day to my next proposed treatment cycle to determine if they could administer the Avistan. My heart dropped a little. I wasn’t sure I was up for more travel and more Avistan but I did not want to be cavalier about stopping participation in this trial given all that it has meant for extending my life.

Luckily, I had an appointment with my Oregon oncologist scheduled for the next day – my first visit to OHSU (Oregon Health Sciences University) in a year! As I biked to OHSU the next morning I found tears of joy on my face – it was wonderful to be enjoying a commute to my medical world. Entering OHSU-land (the largest employer in the city of Portland) I was awed by how affirming I find this community. I park my bike with hundreds of others. I get my free ticket for a jolly tram that arrives like a descending sculpture over my head and takes me to the top of the hill as if on an adventure versus a medical treadmill. It’s Tulip Sales Day so bright colored blooms are being sold for five dollars to support some good cause. My appointment is in the women’s center, which offers huge windows, a play area for children and adults on a wrap around balcony outside, all taking in the awesome view of mountains. Every moment at OSHU gentles the medical woes with positive possibilities. It is not so bad being sick amid a culture dedicated to hope and zest. Oh, I wanted to come home for treatment.

My appointment started early and my lovely, calm Doctor arrived with all my recent test results and said, “Wow, aren’t you doing great!” I explain that I have four vaccines left and she asserted before I have even biased her answer, “No, I think you are done. I think you have chosen a resolute and courageous path. You have gotten a lot of benefit and you will probably get no more.” I could have jumped in her lap and wept. Instead I listed my medical woes and she decisively attributed them all to Avistan, a drug she also believes in and dispenses often. But my body needs a break.

I await my two great docs deciding what is the proposed treatment plan for me here in Oregon. It is now my body’s turn to prove what it has learned from the Part One Autologous OC-DC Vaccines. I intend to cheer on my rebooted immune system in tracking down and eliminating new ovarian cancer cells. Or I may recur and get in line for a return to UPenn for the Part Two T Cell Infusion. I am fortunate to count down to either option.

May we build a world where all diseased people find they have positive options for getting diagnosed, finding treatment options and not being burdened with a payment plan. Thanks to this clinical trial, I might have a bit more time to contribute to that effort! Let’s add that to my to do list. much love, marcy

New To Do List

New To Do List

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25 responses »

  1. Yippee! Home Sweet Home! Springtime Renewal, wonderful to know you’re back on your bike nearby. Blessings on your docs, would like to have seen you jumping into her lap! much love, carol

  2. Congratulations on the wonderful news! I am so glad you are done with Avastin and taking a break with all that travel. Avastin still works for me with mild side effects so I am still on it for the foreseeable future. My break was only to let a wound on my upper leg heal which is about 80% there after 3 months! (No healing the first 2 months)

    Paul and I are going to Alaska at the end of August. We are planning on our trip home to stop in Seattle and possibly Portland. Will you be around the week of September 8? I would love to spend some face to face time together. Let me know.

    Love, Maggie

    Sent from my iPad

    >

  3. I would have loved to chat with you last Saturday at the luncheon if nothing else to tell you how much I enjoy your blog. Maybe next time….

    Marnel

  4. Reading this brought goose bumps to my whole body. Reading your doctor’s words….. I am so grateful you have some reprieve from travel and can be in your home city riding your bike and being in that beautiful OHSU facility. Every time I read one of your posts, I just feel so fortunate to know you and to have shared time with you. You truly are an amazing woman! My best to you as you proceed.
    In love, Kathy

  5. Whew 15 trips to Philly, Marcy!! So thrilled to read that you can stay home for a while… and enjoy Springtime unfolding in Portland.

  6. Marcy- So glad you get a much needed break! I too go to the Abramson Cancer Center for treatment. Not always the most scenic of places. Portland sounds wonderful. I think I will put visiting there on my To Do List just after Ice Pops and Playing:) Be sure to put some Fun in everyday you live! Warmly, Kathy U.

  7. I look forward to meeting you next week at the OVCA Survivors Retreat at Camp Mak-a-Dream. I so enjoy your blog and hope that we will have time to take a walk together. Blessings to you for this inspiring news.

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