Philly Trek #14, Treatment #10 – Performance Art

It’s been a while since I have shared a straight up report on my cross-country treks for medical care. I made my initial visit to Philadelphia, Trek # 1, the first week of April 2013  – a pre-intake intake, hoping to position myself, finally, for admission into the Autologous OC-DC Vaccine Phase One Clinical Trial. I had pursued entrance to this trial for the prior 20 months. We had heard a lot of “no’s” but now we were hearing “yes, maybe.” My cancer was looking stable enough to gain me entrance even if I was still amid my first recurrence. Eleven months later, still amid my first recurrence, it was time for Philly Trek #14, Treatment #10.

Often I have felt like a performance artist when completing my Philly Treks. Now, I model the courageous patient, now I crumble in a hospital bed, and don’t look now, because here the heroine, me, weeps on a crowded bridge as she shakes and vomits up her pathetic orange juice in the fresh snow – again and again and again and again, leaving a small and dainty pattern of no great offence. I, the artist, then continue on towards my housing and a new day that can only be better.

Performance Art

Trek 14, the February trek described in the paragraph above, was not dainty. It’s start was delayed a week by a last minute call from UPenn telling me to find new flights. My luggage already stood packed at the door as I awaited my ride to the airport. A bodacious storm (adjective lifted from one weather forecast) was predicted for the final day of my scheduled treatment, a day that requires a team of ten exact people to be at their posts. The Philadelphia weather projection made complete attendance unlikely. Cancelled, I was.

There could be no complications for my new treatment dates the next week or I would be out of compliance with the trial. Weather forecasts looked good at all ends of my travel but the night before my early morning flight to Philly an airline email informed me both flights were cancelled. I got the last seat in the last flights of the next day, feeling lucky, until I arrived at the Denver airport to see FLIGHT CANCELLED in the monitor. Yes, three flights cancelled in less than 24 hours and the weather was mighty tame. I rushed for assistance only to find not only no assistance but also rudeness. Southwest Airlines, I learn, does not shift you to another airline – and their next flight out to Philly was in 36 hours – too late for me to meet the chemo requirement. When I tried to engage them in problem solving (possible flights that might get me towards Philly on their airline) they said “no” and literally turned their backs on me. Oh my.

Only MY flight cancelled!

While a friend, just completing her own not fun medical procedure, stepped in to problem solve options over the phone, I still felt alone and very, very stressed – this was happening on top of a full week of travel stresses. After an additional $500 of expense and a few tense hours later I was set for the only remaining flight to leave the Denver airport for Philadelphia that night. It was on United and I arrived so late that the trains had stopped running requiring the additional expense of a cab. I was a wreck.

I showed up to treatment the next morning already sick with a migraine. My health did not improve but I did value the team’s dedication to easing my pain.

I decided the rigors of travel on top of treatment just might be too much for this gal.

I have testing and results along with my March treatment – always a dicey combination. My sister volunteered to fly in. It should be a great time to assess. My lab work continues to insinuate disease progression. My December tests were highly contradictory. Maybe this month’s results will offer clarity, always welcome.

What will the tests reveal?

I have had enough time and new information to feel calm with any outcome.

I am tired of travelling cross-country for monthly medical care and, luckily, this isn’t an endless drill. I either close out Part One in the near future, earning a travel break, or it’s time to move on to Part Two. The adventures of Part Two, T-Cell Infusion, dull travel concerns since I will be grounded in Philly until recovered which could take up to six weeks.

So, stay tuned for what comes next.

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To Philly and Back!

I got a taste of my possible new normal last week and it wasn’t bad. In fact, it felt a lot like my old normal, a life I did quite love. Facing mortality I am determined to enjoy whatever each day brings, but that attitude can belie a deeper truth of who I truly am and the life I would like to live. I like being engaged, busy, in the thick of things. I have adapted well to being ‘in the thick’ of life on the infusion ward and the acupuncture clinic but there is a bit of guise in that.The week, starting with last Saturday, March 30th, was BUSY. I knew it would be, so trying to ration my energy, I had even asked my dearest friend not to fly out for my birthday party (sigh) fearing a visit on top of big events would be too much. Even with Stephanie not joining us from Minneapolis, it was quite the gathering. People drove in from many directions to create such a mass that few individual conversations happened but oh what a mass of energy and fun – what you would hope for at a dance party.

The space was lovely, the weather beyond perfect, the host team award worthy and a cake that I never got to sample perhaps in an inadvertent boycott of the cutting into such a thing of beauty. The cake was massive and covered with the ‘best of’ photos of yours truly collaged artistically together.

I stayed on the dance floor and despite my fears that my lung capacity might reduce my ability to boogie, I did not return once to the designated ‘marcy rest throne’. It was wonderful dancing with so many dear friends. At the height of the evening some loud bangs erupted. Oops, the accumulated sound had detonated a few wine glasses. It was time to start winding down.

I had a day of rest before flying off to New York City. Two big east coast events had been foisted together without much ease. The first was a two-day conversation closing out a two-year thinking/action project on engaging the white working class in progressive identity. ROP was among four other groups to feature their work. It was a typical such gathering – 12 hour days, an expectation of your mind always being on.

A special needs person such as I is theoretically accommodated but there is only one size fits all participation. Sit up, stay engaged at the table and maybe, if you are determined, manage 8 hours of sleep. Day one, I functioned. Day two, I functioned. Day three, I functioned and I stopped holding my breath waiting for a glitch as my body rebelled. For five full days I functioned just like any other member of the working world. And I loved it. Luckily, I was able to manage quality food and exercise (there was no day that I walked less than five miles – god bless Manhattan.)

The formal meeting ended. I switched to family housing, slept a full 10 hours and had enormous support in the logistics of the second adventure. I awoke at a leisurely pace on Thursday to walk the 3 miles to Penn Station, train to Philly and exit the train to find the one and only Holly Pruett waiting at the top of the escalators prepared to snap a photo to document this moment – after 18 months we were going to walk to University of Pennsylvania in Philly for a medical appointment. We were finally here.

Holly apologized for her ‘wardrobe malfunction’ but I knew she was the perfectly attired companion for my assignment today to prove to UPenn that I am in ideal health. Holly looked young, fashionable and vital, loaning a definite edge to my efforts. She had clearly spent her proceeding 10 hours in Philly preparing to be a tour guide as we walked the mile from the train station to UPenn. If this was to be my new home, I should start learning about it. (Philly is the 5th largest US city, has five major sports teams and a superstitious relationship with where William Penn’s statue resides in the relative height of downtown Philly. There is more, much more, but we hope to have time to share the delights of Philly.)

In no time we were at the stunningly new, open design of the research wing, signed in and waiting for our appointment to start. Both Holly and I sighed with enormous relief when they acted like “yes, we are expecting you.” All the intake folks were like “really, you are traveling here from Oregon?” YES! WE ARE!!!!!!

The person we have negotiated with for 18 months was there in the flesh and blood. Everything started with hugs. The repeating of information, often having a flash of panic, ‘wait, could sharing this disqualify me?’ Meeting the doctor in charge, Dr Tanyi, who like my new OHSU doctor, is both brilliant and communicating to me through a Slavic accent that I have yet to master. With great energy he reviewed the theory behind the TWO (who knew) clinical trials that I was being screened for. Between needing to remind myself ‘I am truly sitting here’ and the accent, even with my great familiarity with the trial theory I know I missed details.

After the physical exam, he declared me an ‘optimal candidate’, posed for a group photo and left us to meet the project lead and work out the details like the dates for my formal signing of paperwork (May 8th), apheresis/dialysis (May 22nd) and the first vaccines over the three days of June 4th, 5th and 6th with subsequent vaccines every three weeks thereafter until I decide to stop, we run out of my tumor or the cancer grows.

I arrived home after midnight last night. I am thrilled to be home and ever hopeful that by choosing to loan my body to the frontier of medical research forward steps will be made in taming ovarian cancer and extending my own life. Formal signing of paperwork will not happen until May 8th but there is every reason to belief that, courtesy of many, I will be enrolled in the Phase One, cohort four arm of this trial. Let’s keep our fingers crossed for just a little longer.

What a week! Thank you all for the great send off.

love, marcy