Philly Trek #14, Treatment #10 – Performance Art

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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

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!

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?

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.images-2

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16 responses »

  1. Gosh, Marcy, I could NEVER handle the rigors of the stressful cross-country trips you make on top of the rigors of treatment. I wouldnt have been able to do it the first time, much less the umpteenth time. My heart goes out to you as I read about the troubles you had on (I believe) Philly Trek #14 when your flight was cancelled and you were stuck in an airport in your attempt to get to Philly. Im sure I would have melted into a puddle of sobs and tears. Its just so much pressure to be under, on top of all the other stressors operating in your life. Like Stephanie Lee, you, too, demonstrate amazing fortitude and strength. If winning the survival race were predicated on how very hard one works just to obtain treatment, you would have won survival many moons ago. That you make these grueling cross-country trips regularly to obtain treatment is beyond what so many of us could ever imagine doing. How I wish it were so, so different . that you could survive without nearly having to kill yourself in the attempt. I am in awe of your stamina and strength, Marcy,

    Dianne K.

    • Well, I didn’t feel very impressive this last time, I can assure you! The mantra that kept going through my head was what a dear friend said to me as she opted to stop treatment, “time to gather my toys and go home.” We’ll see how much more stamina I have. xo

  2. It’s awful that you have to pay to participate in this hellish ordeal; I wish grants for clinical trials
    would include, at a minimum, funds for travel/lodging expenses for subjects like you who are willing to submit to the unknown rigors and results of the TRIALS of medical experiments (pun intended). Your poor body and pocket book are both taking a beating in order to help the world. One beating alone is way too much for most of us to consider undergoing. Thank you for all that you continue to do to improve life on earth, Marcy, even when you’re so sick.
    Love, Lee Ann

  3. Marcy, I know your fortitude and your strength. I know what you are made of and how badly you want to be disease free. If anyone can do this, you can. I congratulate you on your tenacity, determination, and never ending hope. You are such an inspiration for and to so many and for this I applaud your efforts. Go Marcy!
    Yvonne Rua de King

  4. You have been such a trooper through all of this. You know, of course, no matter what you decide to do, we will all support your decisions. This is probably the most personal decision anyone can make. If there is a heaven and a hell, you’ve been through hell, and surely heaven awaits. Love you.

  5. Marcy; I love the line and identify with, “My lab work continues to insinuate disease progression.”

    Also, you are accruing some serious frequent flyer miles! :)

    Wishing you strength and patience…

  6. Marcy,
    You ARE inspiring – even when (especially when?) you have such a rough go getting to and from treatment! I drive 50 miles and consider it a challenge some days. You are so strong, so determined and SO inspiring. Thank you for all you do, and thank you for sharing your experiences.
    Hugs,

  7. Thank you Marcy for always keeping us in the loop. It was wonderful to see you recently, and good to know what’s happening in your moments that aren’t lovely walks in the park with babies.

    I relate so much (from my brief encounter) to your description of the daily demands of illnesses as performance art. Shortly before I ended up in the hospital with Esperanza, I had seen a Winston Churchhill quote on the friends fridge. “If you’re going through hell, keep going.” It meant I thought of my situation in more dramatic terms, like a Greek epic of a voyage with a storyline.

    Sending you much love. Amanda

    Sent from my iPhone >

  8. Oh, Marcy. I’m so sorry! Even if you weren’t rushing to get a necessary cancer treatment, the trip would have been horrible. I hope it’s easier next time — and I hope with everyone who loves you that the news is good.

  9. I’ve liked your post not because the experience is likeable but because the tenacity, grace and humanity you show through this ordeal is admirable. You are a beacon of light for everyone facing these tough situations.

    • Thank you – as you say “Remember fondly. Listen attentively. See clearly. Think broadly.

      Enthuse effusively. Speak gently. Love kindly. Live graciously.” All worthy goals to maintain during the highs and lows and plateaus of our own lives.

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