To Philly and Back!

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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

 

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