Sunday, August 31, 2014

Realism/Pragmatism/Positivism/Truth...and a really good summer

Before I start the diatribe, I just want to report that even with everything that's happened - cancer recurrence, my work plans thwarted yet again - this has been a good summer.  Jon was home, I was home, we relaxed, we watched many, many World Cup games, we got a puppy, we spent a lot of quality time together and with the kids.  We left our daughter at college for the first time, and rather than feeling mopey, I feel really, really happy for her.  She is happy, engaged, excited, busy.  It could not be better.

Now, to the diatribe:

Like Halloween costumes for sale in September, or Christmas decorations in October, the onslaught of Pink (breast cancer awareness marketing) has begun already.  I belong to an online support group with almost 900 members, all of us living with metastatic breast cancer.  It would be an understatement to say that Pink and all it stands for drives most of these women crazy.  It drives me crazy too.  Even before my mets diagnosis, when I was being treated for my earlier stage cancer in 2012 and 2013, I bristled at the language of fighting, battles, beating cancer, kicking cancer's ass, whatever lingo somebody can come up with to make it seem like I could actually have some part in whether I lived or died.  Truthfully, I felt even then that were that the case, what of the people who die?  Did they not fight hard enough? Did they not have what it took to kick cancer's ass?  Pink culture implies that if you find it, you can beat it.  It has also become a tool for selling stuff in the guise of raising awareness, as if being aware that breast cancer exists somehow makes it more "beatable."  I believe we need spaces free of obligation to be the smiling, pink-clad, inspirational fighters, expectations that have somehow become the norm for people with cancer.  Sharing information about metastatic breast cancer is a crucial part of that space.

The truth is that no one - oncologists, researchers, pharmaceutical companies - knows which patient
will respond successfully to a particular treatment, despite knowing that the treatment is indicated for the type of breast cancer the patient has.  I appear to be pretty fortunate right now, as the standard protocol of Taxotere/Herceptin/Perjeta for metastatic HER2+ breast cancer, has made the detectable lesions in my lungs and lymph nodes go away and those in my liver shrink substantially.

Another truth: there is no data that shows the number of patients living with metastatic breast cancer (MBC).  Those who are Stage IV at initial diagnosis (6-10% of patients) are counted.  Those diagnosed at earlier stages who then have metastatic recurrence are not counted.  My cohorts in this group and I are counted at initial diagnosis, then when we die. Statistically there is some practicality here.  To avoid confusion a patient's stage is never changed, to avoid data showing that everyone with Stages 0-III survives and everyone with Stage IV dies.  For statistical purposes I am Stage IIIa with metastatic recurrence to lungs, liver, and lymph nodes.  However, when I went back to my wonderful oncologist with a lump in my neck and it turned out to be MBC, there was and is no registry in which to enter the data of recurrence.  So strange as it may sound, no one knows how many are floating
around on this leaky boat.  MBC is sort of like the movie "All is Lost."  Robert Redford is on a solo sail and thing after thing goes terribly wrong.  His only recourse is to scurry around fixing each problem as it arises, moving onto a new plan as each repair becomes ineffective, as it inevitably will.  If you haven't seen this amazing movie do, unless I've ruined it for you by comparing it to MBC.

The problem of not knowing means that there does not exist a data-driven need for research on treating and even curing MBC.  Breast cancer kills no one. It is the addition of the M-word that renders it deadly.  Currently less than 5% of breast cancer research dollars goes to research on metastases, though 30% of patients with breast cancer at any early stage will go on to develop metastatic recurrence.  But... since the only official numbers are the 6-10% of Stage IV diagnoses, this 5% does not appear to be as beyond comprehension as it actually is. 

I can tell you from my short (so far) experience in this scary world that people like me feel pretty
isolated a lot of the time.  We are past the point of being cheered on with "you can beat this!" and "keep positive, you'll be fine!" Though we are treatable (Treatable means that we are given a treatment and stay on it until either it stops working or our bodies can no longer tolerate the treatment, then move onto another treatment, and so on until the options have run out.), we are incurable.  Many people are understandably uncomfortable with this paradigm.  We are here, alive, and many of the treatments do not cause hair loss so we may not look "like a cancer patient." We have daily lives that wax and wane with treatment side effects.  Sometimes conversations swirl around me now and I feel (whether or not it is accurate) that I cannot relate to anything being said.  Never mind relate or contribute - because of the chemotherapy I have had I have trouble even paying close attention! There is no more normal for me, although I am told by my support group comrades that after about a year with it I will settle in to my "new normal."  People say, "Well... none of us knows when we will die.  I could get hit by a bus tomorrow!"  This is well meaning, but we MBC ladies (and the 1% who are men) can see the bus coming and we know we will not be pushed out of the street by a well meaning stranger.  And that is just very, very different than the universal mystery of when death will come.

My mom tells me I should be more positive.  She means well, and I appreciate that she has been one of my biggest supports since this all began two years ago today with my initial diagnosis of breast cancer.  I believe that being realistic and hoping for the best is the best any of us can do, and is the mark of positivity.  Naivete and misplaced faith misses that mark.  I appreciate each day.  I am grateful for the scientific advances (especially with regard to HER2+ cancer) that have kept me alive this long.  I am grateful for my support system and know how lucky I am to have it.  I know everyone in my boat is not that lucky.  I believe that speaking difficult truths in a pragmatic way is not negative.  It is simply real and that is how I have always tried to be.  When I was on the school board I was known to my colleagues as the one who would say the thing that needed to be said, that no one else wanted to be the one to say.  So be it.

To wrap up on a pragmatic, real, positive note:  If you feel the urge to do something in commemoration of the Pink month, please consider contributing to one of these two incredible organizations. 100% of METAvivor funds go to research grants for metastatic breast cancer.  Metastatic Breast Cancer Network fights for treatments to extend life, advocates for MBC patients, and has excellent educational resources.

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