1st Recurrence & 3rd Chemo Drug Tried

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This morning the wedding ring came off.  It wasn’t an easy process but it was time.  The finger is swollen and everything chafes these days.  I have dubbed this chemo the chemo of 100 indignities.  I started by calling it 1000 but really, 1000 I eventually wondered.  Why exaggerate?  It’s the first time I have felt my body a form of entertainment as I never know what indignity will show up with the start of a new day.  I am a science experiment, at least to me.  The indignities are small but add up.  Most wrong of all they have thrown me back into migraines that had all but disappeared once the surgeons claimed my ovaries two years ago.  After living with migraines since age 12 it seemed the gods had their own sense of decency – we will give you metastasized ovarian cancer but relieve you of the chronic burden of migraines.  You will not be given more then you can bear kind of thinking – well, that honeymoon seems terminated.

So, I continue with my 8th month of non-stop chemo (and 2 years with 22 infusions thus far – a lot by any standard) with my newest drug doxil aka the red devil. It drips in you an actual orange-red adding some rare color to the infusion room.  I wont know until August whether I am approaching disease stabilization, the goal.  I am not looking forward to that test.  This next infusion I add in an additional drug every two weeks, Avistan.  I have swung wildly back and fourth on starting this drug these last 8 months, agreeing to it just to cancel a day or two prior to its start.  This time I wont cancel.  I am resolved. Technically I am lucky to have it offered to me since it is not officially cleared for ovarian cancer yet by the FDA (and they just revoked approval of it for breast cancer – a non confidence booster…but that is cancer care in 2012 – one crap shoot after the next.)  Starting Avistan probably means that I will never go off chemo, which just clarifies my status in another uncomfortable way.  And it is notorious for it’s own, more dramatic, set of side effects.

All the above is very real to Mike and me.  And yet we plod forward with relative ease and happiness.  We have another community garden plot, this one an actual block from our house. The front and side yards are filled with growing space and another garden will be added this summer. Growing is a belief in the future. Growing is accepting life cycles.  Our newly added jasmine releases its fragrance today.  I have finally gotten back to quilting after a two-year creativity stall.  Often our biggest worries are the same mundane ones we all face – can we train the cat not to wake us in the night, where do all the dirty dishes come from, why is it raining again?  

Perhaps, though, we live with gratitude more ever present.  For 14 of the last 24 months we have relied on meals dropped off once/week and other gestures to keep us going.  I am sure the stalwart ranks could use some new helpers.  If you are game to sign up and give someone else a break contact Holly Pruett who runs the lotsofhelping hands site – email her at hollyjpruett@gmail.com.  Please know that every one of your kindnesses is deeply appreciated.

love, as always, 

marcy

p.s.  Cynthia Nixon, the actor who is famous for her role in Sex and the City and who just finished playing the lead in Wit on Broadway, compared her own breast cancer to her character’s ovarian cancer like this:  “It had the same name,” she said. “But a cat can be a kitten or a mountain lion. They’re both cats. That is, ovarian is much more ferocious.”  The woman who shared this quote found the comparison very useful because she feels that most people who don’t have experience with cancer assume they’re all pretty much the same.  I am not sure they really are that different – what matters is stage at diagnosis.  But since ovarian is almost always diagnosed late we are ferociously occupied.  And, of course, pathetically under researched compared to other cancers. Don’t forget early detection depends on you – listen to your body and the small discomforts that PERSIST for more than 11 days in any calendar month. 

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About marcy westerling

I am a long time community organizer with a passion for justice and founded the Rural Organizing Project in 1992. Derailed by a Stage IV Ovarian Cancer diagnosis in spring 2010, I have stayed in treatment since then. I am learning how to embrace livingly dying and hope that by starting a Phase One immunology clinical trial at UPenn in spring of 2013 I will have more time to find the sweet spots of thriving while terminally ill.

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