End of Study Results: Great, Decent, or Just Sigh

It’s been 3 ½ years since my terminal cancer diagnosis and I still hold out for the letter clearing the whole misunderstanding up. “Ms. Westerling, we apologize for any confusion. It seems like we got some images hooked up with your case file that were just, well, wrong; you are fine. Have a good day.”

My friends are ready to celebrate good news but the only good news I want is a full and complete retraction. Anything else feels like celebrating a delay in the inevitable. I know this attitude makes me an ingrate so do me a favor and don’t spread the word that I am unsatisfied.

This morning I finally tracked down my phase one end-of-study results. The lead up looked promising and I assured myself that the delay in the final details didn’t matter because, clearly, I am trending in the right direction. But judging by my response to the official ‘good news’, I was holding out for better.

Would I have been happy for the best-in-show possibility of No Evidence of Disease (NED)? A result that never denies that microscopic ovarian cancer is floating about. Or would any result in this relentless new life path of staying alive despite cancer have reminded me of how harsh this life path seems. (Psst, I want my old life back!)

A growing debate gained volume this summer over relabeling some types of lesions out of the cancer lexicon. It lead to some juicy headlines that crossed my screen. Maybe in lieu of the letter I imagine arriving any day now, I could just rebrand my cancer. But that hope was dashed as well.

Now that I have had my wail, I must recalibrate to the small miracles that I am allowed. They add up. They extend life. They are worthy of celebration. My job is to adapt.

The End of Study results show that my volume of cancer has decreased but remains visible. The best I can get towards quantifiability (is it the size of an almond, the head of q-tip?) is this – I entered the study with a volume of 405, now I am at 44, a hefty and measurable drop for my loved ones to celebrate. I might just need a few days to stay grumpy at the 44.

In the meantime, Herman Wallace, after 42 years in solitary confinement, is released to die as a free man. He is in the final days of liver cancer. What seems a bittersweet victory might be much bigger for him or so I hope. I wish him an end in some lovely, sunny field surrounded by the many who stayed by his side over the four decades rather than the hospital he is liberated too. But mainly I hope that breathing in his final breathes as a free man heals the hurt of injustice. And this I will celebrate.

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Home Again

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!

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

After 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.

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.

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.