Alive on MBC

To me, the word survivor indicates that some traumatic event occurred, and someone lived to tell about it.  The event is concluded, and someone survived.  A plane crash, a tornado, a plunging elevator, a sinking ship, a horrible relationship.  With a miracle, or inner strength, or just plain luck, people survive such catastrophes.  So, are we walking wounded with metastatic breast cancer, or perhaps any cancer, actually survivors?  Did we come out on the other side of something?  As a staunch realist, I continually need to bite my tongue when I'm called a survivor.  I'm a soldier, maybe.  Still in battle.  My chemo message board group calls itself the warrior princesses.  I'm a warrior.  I wouldn't make a great princess.  This weekend I heard words tossed around like conqueror and metavivor (wtf?).  I can't even conquer nausea when it strikes, so that term seems inapplicable, and metavivor is beyond contrived.  I am not a survivor.  Gloria Gaynor:  survivor.  Me:  struggler.  More upbeat, you say?  Okay, then, I'll accept warrior, as long as I don't have to apply extra makeup and lots of pink stuff.

This weekend was purple, like the theme color of the organization called Living Beyond Breast Cancer, which, fortuitously, is based over the bridge in Haverford.  LBBC holds a conference each year for people with metastatic breast cancer and their caregivers.  Ken had to take Jonah to baseball, so I took Jill.  Which turned out to make more sense, anyway, because it wasn't the most he-man environment.  I was excited but nervous about attending.  I've learned that anything associated with MBC will be either depressing or uplifting.  Depressing can knock me off my feet for a few days.  Uplifting strengthens me until I feel like I have some resolve, even some control.  Therefore, I breathed a huge sigh of relief immediately upon arrival at the conference yesterday morning.  Women in purple, yellow, or blue plastic leis milled around the lobby, grabbing coffee and scrambled eggs before heading to tables inside.  I was given a purple lei because I am a survi -- warrior.  Jill got a yellow one.

I'd never seen so many MBC victims at all, and here we were gathered, talking, laughing, sharing our diagnoses.  Where are your mets?  When were you diagnosed?  Nobody looked sick -- no wheelchairs, breathing tubes, etc. -- but we all seemed to be taking lots of pills.  Many bald women, of course, some with head coverings, some without (today, the bald women were much braver about showing off their shiny craniums -- crania?).  We were from all over America, come together to learn, share, and empower ourselves.

After gathering our plethora of swag and finishing our breakfasts, the first panel began.  The discussion regarded perspectives on breast cancer, but it was mainly about meds.  However, the great paradigm shift that was discussed at length pertained to the changing consideration of MBC as a chronic disease rather than a terminal disease.  Four oncologists said we are "almost there," to the point of considering MBC patients the same as specialists treat diabetes or heart disease patients:  as patients who can live a long, stable life with continuing care.  As you would expect, we were fortified by this information. 

After the panel discussion and lunch, I went off to the nutrition seminar.  The woman leading it holds a master's degree in nutrition and is the nutrition specialist at the local Cancer Centers of America.  She knew her stuff, and shared willingly.  I was the first to ask a question at the end of her presentation.  I asked about sugar feeding cancer, because I hear it so often.  In fact, I've been mostly sugar free for the last few weeks, leading to quite an adrenaline burst.  The nutritionist, however, said it has to do with insulin levels, and there has been no scientific evidence to prove that sugar in moderation will cause the cancer cells to expand.  Today a doctor suggested that we could "eat a piece of cake, not a whole cake" and be fine.

One problem that was widely expressed during the course of the weekend was fatigue.  Thank goodness.  We're all tired, and it is serious.   And right now, the only decent prescription is exercise.  I suppose the doctors are taking it seriously, then, but not big pharma.  Oh well.  Pain, on the other hand, has multiple fixes.  I'm in pain most of the time these days, thanks to Xeloda and Exgeva (the monthly shot I get to protect my bones), and I've just been taking Advil.  However, I've taken so much in the past few weeks, I now realize it's time for me to discuss pain management with Dr. Fox.  I had thought he would simply prescribe one of the general, sleep-inducing oxysomething pills, but apparently pain relief doesn't have to equate to further exhaustion or added dopiness (I, for one, am quite dopy enough). 

Today I attended a seminar on liver and lung mets.  I left with about 15 questions to ask Dr. Fox at my next appointment.  He might end up sorry he gave Jill his parking spot yesterday morning (long story)!  The information wasn't right for this blog, but if anyone reading this wants to ask me questions, message me or email me or call me or whatever.  The last discussion of the conference regarded complementary treatments, and that was pretty much what you'd expect:  accupuncture, exercise, meditation, pot, yoga.  Speaking of yoga, LBBC will be holding Yoga on the Steps on May 20 at the art museum.  Anyone want to come along with me?  You just have to raise and/or donate at least $60.  It sounds like it will be incredible.

Can you tell how impressed I am with LBBC?  I should also mention that I attended the conference for free by attaining a fee waiver from the LBBC web site, and that Komen provided travel grants for many attendees.  Finally, I'm thrilled to have met some new and lovely friends this weekend, and as ever, I'm filled with appreciation for my existing friends and family.  Love you!