Tag Archives: debulking surgery

A Second Abdominal Surgery – Done

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Surgery is never fun but once done it seems much more tolerable than anticipating the process.  I hope to never repeat my 36 hours purge and fast, even though my superstitious mind sees the process as core to me having an easier surgery then was ever imagined.
My famous surgeon who has bludgeoned us with more truth then we have ever requested this past year, usually repeated in 20 minute monologues, seems suddenly delighted.  My current theory is that he so loves saving women’s lives (his reputation) that his churlish attitude towards me represented his resentment that his skills could not master my situation.  And to cope he needed to re-explain that reality.  Now he seems to be stalking me with cheer although he has made no future oriented pronouncements and we all know that my diagnosis stays the same.  (I am not curable.  I never was curable.  But many incurable, terminally ill people live a long time.  I would like to be one of them.)
I am home, happy and feel like I was in one hell of a bar room brawl.  I do wish that I could share the great bruising pattern that even descends my upper thighs – just what were they doing in that operating room!?!
Despite bruises and lacerations, I am clearly in good shape for the scheduled return to chemo today.  It is low dose taxol/avistan, weekly, and considered easy to tolerate.
I am not a big fan of my last year – I appreciate having had the year but I would rather not redo my approach to it.  I never imagined being a chemo failure and thus was so ‘shocked’ by each spiral of bad news.  I feel like I am starting over.  I approach this next year knowing I may never leave treatment, that the quality of my life can be high while in treatment and it is time to end the suspended animation of this past year.  I love life and I can love it while in treatment. What’s more, I intend to more fully live it while in treatment.
Regarding the surgical findings.  The extracted tumor is at UPenn being tested for cell volume as I type.  I will know how it is rated for vaccine use in the next few weeks.  Other tumor material is off to the Clearity Foundation where they will assay it in dozens of ways to see what treatment approaches might best match the current profile of my cancer.  (Cancer mutates constantly.) Next steps with UPenn stay complicated and externally dictated.  It is a longer shot than we would like that I will get in to one of the dozen slots but we are making the best effort possible.  Regardless, I wont be starting there until my current course of chemo is well underway e.g. winter.
My biggest fear counting down to surgery was what would be revealed when they went inside.  We all know some one diagnosed so late that surgery is cancelled shortly after starting because “There is too much.”  The surgeon found my smaller tumors in the omentum had combined into one 10 cm mass that was easy to remove. He could see his intended target far back in my body, seeming the same walnut size as the ct scan had communicated. He was happy to not need to take on the risks of removing it as it sat intricately wrapped around the colon.
Less cancer is always good news especially when your official tool is chemo.  The surgeon could see that I was filled with microscopic disease.  And, of course, I continue to have cancer in the lung but given my growing disease volume the decision to both do surgery and the results of surgery are positive.
Courtesy on this extended support community (YOU!) I feel quite ready for this next phase of the journey.  xo

Off to More Surgery & Trials – Hi Ho

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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