Year Number 35

October 14, 2015

Emily Bronte died at age 30.  Lorraine Hansberry at the age of 34.  Patsy Cline at the age of 30.

All women classified as having great potential who died too young.

As I have begun my 35th year knowing that it could be my last, I’m starting to feel like I’ve let myself off the hook about fulfilling my own potential.

The Lynparza that we fought so hard for (thank you all again for your incredible efforts) proved ineffective.  It did not work the same way that my trial PARP Inhibitor worked. Early September scans showed considerable growth in my liver.  And possible growth in my lungs.  (The lung scans were a little inconclusive, possibly due to the onset of an upper respiratory infection.)

A couple of days after I got the bad news, Dr. H had me meet with Dr. R, a breast cancer specialist who has just joined the practice at the Hope clinic.  Thankfully, Dr. R did not place more chemo at the top of her list of treatment options.  Instead, she wondered why hormone therapy hadn’t been exhausted, given that my cancer is estrogen positive.

I did about two weeks’ worth of hormone therapy at the beginning of 2014, right after my hysterectomy.  But it was done in conjunction with a trial drug, LEE011. (MonaLeesa was the name of that trial.)  The trial drug made me so sick that I resigned from my job and moved back to Tennessee to be close to my family because I believed I was dying within a matter of weeks.  I lost nearly 30 lbs.  I very quickly stopped taking all medication and braced myself for the end.

Dr R pointed out that the trial drug proved so harsh that no one took the time to examine whether or not the estrogen blocker it was paired with might have done any good.

She explained that even with the removal of my lady parts, I still have a lot of residual estrogen in my body.  Estrogen is produced by fat tissue, not just ovaries.  And estrone is a type of estrogen that is present even after menopause.

So, she has started me on an estrogen blocker called Faslodex.  This treatment consists of two injections each month.  Except for the first month of treatment (which happens to be this month for me) in which the dose is boosted.  As a means to jump-start the treatment, 6 injections are given over the course of 4 weeks.  Plus my monthly Xgeva shot.  Seven injections total.  Happy Birthday to me.

(Don’t get me wrong, I will gladly take a couple of monthly shots over more chemo.  I’ve said it before and I’ll say it again.  I believe I would rather die than ever do more chemo.)

The needles are seriously HUGE.  It takes 3-5 minutes (depending on how fast the nurse pushes the plunger) per injection.  The Faslodex is a really thick substance.  It burns like hell going in.  And this past week, during the second set of injections, I nearly blacked out from queasiness during the shot.  (From now on they will be given whilst I am lying down.)

Side effects so far include: bone pain, light but manageable nausea, lack of appetite and silver dollar-sized bruises on my hiney at the injection sites.  Oh, and mood swings. Super fun.

It’s all kind of like having a very bad period. (Ironic?) Crampy legs/abdomen and a strong desire to sit on my couch with a heating pad eating only ice cream and crying over Disney movies.  (This makes all of you want to come hang out with me, huh?)

Once my white blood cell counts and hemoglobin rebound from being off of the Lynparza, Dr. R will add an oral medication called Ibrance to my regimen.  Dr. R and Dr. H say they are remaining very hopeful.

But as I approach year 5 of a statistical 3-5 year survival rate, I’m struggling to hang on to hope that the docs can delay the inevitable for much longer.  And admittedly, the mood swings provide me with some days where I welcome the inevitable.

I’m not quite sure where I lost my indomitable spirit.  I seem to find it when I’m out adventuring with my favorite people.  But I quickly misplace it the minute I’m home.

Last week as I was sitting in an office waiting room, a nice older gentleman offered up some small talk to pass the time.  Asking where I was from and why I was there by myself.  When I answered, “It’s easier to come by myself,” he seemed unsatisfied and maybe confused by the fact that I look much younger than I actually am.  “Where are your parents?”  In a bumbling effort to ease his discomfort over the fear that I had unloving parents, I expanded with, “Oh… well, I live by myself.”  He replied, “How sad for you.” And after years of thriving on my independence and reveling in the freedom of which bachelorette-hood allows me to come and go as I please, I suddenly felt an unswallowable lump in my throat and hot tears burning in my eyes.  I overwhelmingly felt unloveable and purposeless.

I’m blaming it on the hormones.

But I do wonder how many people look at where my life is currently and where I once planned to be and think, “How sad for her.”

Once upon a time, when I lived with a boy I called my husband, we planned to have our first child the year I turned 35.  We would have our perfect home in the woods where we could hike every day and gaze at the stars every night.  We would sustain our livelihood through writing music and plays and we would travel wherever we wanted. And we would have 5 big dogs.

A fairytale, sure.  But it was our dream.  And we could attain it.  For a good stretch of time, it was just within the reach of our grasp.

I’ve let go of so many dreams like this as a necessary means to keep a healthy mindset.  I don’t let myself dwell in the sadness of being unable to have a child.  I focus on how much better it is not to leave a motherless child behind.  I don’t allow myself to have romance with any interested parties as I feel like it is cruel to drag someone into The Cancer Games arena and potentially wound them in an irreparable way.  It is better to be on my own.  Easier.  No complications.  No heartache.  I don’t push myself to write because the things I have to say are so wrapped up in pain and loss.  The creation of a new piece requires too much focus on all of the hurt and then I lose moments of joy and contentedness.  I’ve stopped auditioning or submitting work partially because the processes are unwanted additional stressors, but mainly because I don’t know if I’ll be here long enough to see a contract through to the end.  And since I’m long past grappling with my own mortality, most days feel like just waiting for the inevitable.

How do I push myself to keep fulfilling my potential when I’ve already reached the point of acceptance of the end of days?

End cancer: the sequel, chapter 8.

PS. In addition to being the start of this new treatment, September was Treat Yourself Birthday 2015 (the phrase should be sung a la Tom & Donna from Parks & Rec… it’s fun!)  Some of my most favorite people on the planet treated me to a most magical birthday celebration.  It was filled with music, friends, wizards, dolphins, parades, bonfires, cake, food & wine, stilt walking, Hungarian moonshine, all things Disney, beach time, pool time, puppies and a newly acquired fixer-upper project to help me achieve a couple of bucket list traveling adventures.  Pictures below.  (Thank you CE, HG, SZ, BR, TC and SKA for one of the most memorable birthdays of all time!)

Huckleberry Moosh & Finnegan Meeko:

Huckleberry Moosh & Finnegan Meeko

Rhythm & Roots:

image

image

Camper:

Orlando/Harry Potter/Disney/Beach/Dolphins:

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One Response to “Year Number 35”

  1. Erin G. Says:

    Love, as always, from the Pacific Northwest.


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