It’s been a roller coaster few weeks. First my ct scan came back with new signs of disease progression on August 14th. I have had a year of these dour ct scans now but each additional period of disease growth has worse implications. My oncologist closed our August meeting by recommending that we pursue our top choice (and only choice) clinical trial at UPenn for a vaccine made from my own cells. We had been working on qualifying me for this since last November but it is a Phase 1 trial (riskier and thus harder to get into but you are also guaranteed the treatment being tested.) And surgery is required. We had been turned down from surgery as an option last November based on little likelihood of gathering enough vaccine material and too much risk. The current thinking is that you do not do repeat surgery on patients like me who recurred fast and have multiple cancer sites. Anecdotally, all the women I know who have significantly outlived their prognosis have been multiply de-bulked (eg surgery), many over 5 times. I was all in favor of surgery under any terms. What we did not expect was our surgeon also to agree to the surgery that he denied in November. He said that a tumor was now ‘easily harvestable’ and of clear size to meet the study criteria. He was also painfully clear that he would do no other cancer clean up while inside because of the current wisdom that it is more risky then productive. But Surgeon Cappuchini, like my oncologist Dr Mashru, agreed that at this point in time proceeding towards this clinical trial made best sense.
Wow – I was suddenly approved for surgery! I was quite happy (despite Mike having serious doubts.)
But the devil was in the details. A team needed to be lined up to handle the removed live tumor to then head to UPenn for assessment as I continued with next steps for qualifying for their vaccine trial. In order to get a complicated, fragile kit delivered to Kaiser many people needed to sign off and each one of them balked and sent out alerts. Who was this to be billed to? (Which Kaiser research graciously agreed to cover.) Who was responsible? By then too many people were involved making liability a new issue. As people needed to sign off formally they were reluctant to be seen as going against current surgical wisdom (no surgery just to qualify me for a trail – regardless that that surgery would also remove my largest and least responsive to chemo tumor.) Everyone said ‘don’t ask me to sign off, ask him’ until we were stuck in an endless loop – a week plus of this.
No one messed up. Everyone did their job. Everyone stuck to the letter of the current rules. Alas, where did that leave me – the fucking patient who is not always served well by these rules. Only they are protected from liability. I am stage iv recurrent ovarian cancer. The only accepted medical option for me is chemotherapy. I am now medically labeled a ‘chemo failure’. There are other chemos to try and I will but in 2 1/2 years my body has shown an incredible ability to nurture cancer while on chemotherapy. This is why women like me do not survive 5 years.
I would prefer a medical system with some waivers that allow informed patients to proceed. I have spent nine months understanding why the clinical trial at UPenn is my best current hope. My medical team agreed after a year of trying other options. I am not trying to waste precious funds or resources. By participating in trails I use my body as a foil for other women while hoping to buy time for myself. Alas, this route pursued with tremendous hours, heart and research was denied me yesterday morning. It seemed final. We were done pushing. And then, a wacky phone call came in to set me up for surgery next Tuesday, September 18th. The surgeon had chosen to take on liability. I have cursed this surgeon many a time for his gruff bedside manner in which he overly details why I am the rare woman he cannot save. I have heard him deliver this 20 minute spiel three times now. It is a bummer to listen to. But he signed off on the surgery that we had finally hit a dead end on. Thank you, Dr Fabio Cappuchini.
I have been off chemo for more then a month to allow my body a break, time to get a tooth extracted and now this abdominal surgery. Surgery should happen next Tuesday. We wont know until after surgery how involved it ends up being. They will start laproscopically (blowing my belly up to the size of a woman carrying full term triplets) but they believe that they will probably have to convert to an abdominal open due to the positioning (deep inside) of the target tumor and its size. The abdominal open will require more time in the hospital and complete rest but either option keeps me needing to recover much of the next month but hopefully I will return to my new chemo regime of weekly taxol plus avistan by late September.
It’s been a messy, stressful month. To top it off my letter welcoming to Medicare got ‘lost’ and I officially started September 1st when I had understood it as October 1st – this matters a great deal when you are negotiating tricky surgery. And looking at needing to close out your 25 year health care through Kaiser Permanente (a secret) and navigate the new options via Medicare and pulling together a brand new team….maybe that fun saga will get detailed another time.
Throughout this month an incredible and expanded team of volunteers were tasked in working groups to assist with different levels of negotiations. A shout out to each and every one of you.
The amazing result is that after 9 months of trying to position me for the best best clinical trial nationally if not internationally I am having surgery to move me forward in to acceptance at the UPenn research scene. This is less a magic wand then a hail mary pass. But I truly believe that as we now try to get me past the very dicey 5 year survival mark (having past the 90% chance that I would not make it two years!), we have just inched me to a position of actual confidence in the possibility that we will have a big old 5 year survival party in April of 2015. You, of course, are invited! Thanks for cheering me on. much love, marcy