Tuesday, March 10, 2015

SXSW 2015

If you are not aware, in just a few days, I will be winging off to Texas to participate in the big interactive/film/music festival called South by Southwest.

I will be moderating a core conversation, along with Healthline's VP, David Kopp.  We will be discussing Finding a Cure for Breast Cancer - What Needs to Change.  This is supposed to be a free-ranging conversation with ideas and input from all audience members, so I invite you all to come share your vision for how we can create a world without cancer.  The War on Cancer as announced in the 1950s has not been a grand success and it is time to brainstrom a new plan of attack, and whether you are a researcher, a survivor, an oncologist, a family member or have never known anybody with cancer - you all have a stake in the outcome.    I plan to discuss what has gone wrong in the world of non-profits, and what has gone right in advancements (Herceptin/Perjeta) and what we can do to get more innovation in the world of breast cancer, perhaps with big data involvement.  Silicon Valley can tackle anything!

Whatever we talk about - I want you to be a part of it!

Our session is
When: Sunday, March 15, 2015, 5:00-6:00 p.m. CT
Where: JW Marriott, Room 201-202 – SXSW Interactive, Austin, Texas

I'll be attending keynotes and talks and hope to share some of that with you.  I'll certainly blog it when I return home, but for quick updates, like and follow my facebook page, and also follow me on twitter @butdocihatepink.  We'll be having a twitter party during the talk with the hashtag #BCCure so you can participate live!  Sign up here to get a reminder.

Are you in Austin and want to say hi but can't attend SXSW?  There is a Meet and Greet on the 14th.  Sign up to reserve your place. The room only holds 25 so sign up today!

Finally, if you have not signed my petition encouraging Komen and the major breast cancer charities to change course and donate 50% of their funds to something that will actually cure cancer, please do so now.  17% is shameful.

Wish me luck as I travel for the first time in years!  I don't know how my body is going to hold up to it all but I'm very excited to have the opportunity to be a part of such an amazing event.

See you in the Lone Star State!

Saturday, March 7, 2015

RIP Lisa Bonchek Adams



I've been gone all day today, volunteering at the regional Science Olympiad, an event I've been involved in for years.  I thought about cancer a lot today, recalling when I was a bald mom on my first chemo, whose child was a participant. As I relived those memories and thought about how long this road has been, I was dismayed to realize that somewhere on campus this afternoon I had lost my diamond "cancer" ring,  the one I'd had to rebuild, the one that was supposed to represent triumph over disease. I've lost so much weight that the ring was loose.  I drove home, angry at myself for wearing it anyway.

When I got home, I discovered the news that Lisa Bonchek Adams had passed away

I'm shocked.

No, I'm devastated.

I'm full of sorrow for her family and loved ones.  I'm heartbroken at the thought of all she had hoped to do and should have been able to do and now will not.  I know the pain her family feels is unfathomable, not softened by the fact she was ill first.

I'm also weeping for our community, the metastatic community.  We have suffered a great loss.  Our unofficial leader was Lisa, who was able to connect beyond the cancer community.  She described the horrors of metastatic cancer unflinchingly, and in so doing, she caught the ear of of the public.  It is so hard to get people to acknowledge us; our story is ugly, we are not the survivors the world wants us to be. Yet she managed to be heard.  On twitter, she was followed by the healthy, by the sick, and also by the media.  She was our public voice, one we desperately need in the relentless perky face of pink.  Once, a cancer-shaming op-ed was written about her in the New York Times, an event that caused an online ruckus - and which taught many more people about mets.   Because of her and her charisma, people learned.

And now she is gone, like my ring, like those days of my thinking if I could just endure cancer treatment a few more weeks, it'd be over.

Metastatic cancer, it takes everything.

Unbelievably, I was talking about Lisa just yesterday.  Somebody was concerned about her, as we all have been, and knowing that I'd been very sick too, asked me a question.

"Did you think Lisa will be okay?"

I only know what she shared online. Although we knew of each other and talked privately on a couple of occasions, we weren't close friends, so I didn't know more than any other reader.  I knew her health wasn't looking good but she hadn't given up. She was still posting from time to time, in fact, had done a blog post on March 1st.   She always admitted when things were hard but she didn't seem to be stopping treatment and was not, to my knowledge, in hospice.

So presented with that question, I thought of people I know - people who have been terribly sick, as she was, and who pulled through. I know people who have paracentesis regularly and are doing well.  I know people who had mets all over their liver and still got to NED, and I know people ten years past brain radiation.

I also know people who haven't made it.  Far too many.

My response was to share the good stories, and then I went on to say this: in the larger sense, in the meta sense, I thought Lisa would be okay.  Having been very ill myself, I think many of us are able to get to the point where we accept our impending death as reality. Clearly, we don't want it, we push it away, we want to live, we don't want our families to be without us. But we can face it.  At some point, anger fades.   We  understand that the world goes on without us, that things end up okay for our families even if we aren't there. We know that the sun shines, hummingbirds sip nectar and our loved ones will smile again -  even after we are gone.

I got to that point of acceptance.  That doesn't mean I gave up treatment or trying to survive or doing what I could to get another day, week, month.  It just means that I relinquished control and felt peace.
I can't imagine that Lisa, with her fierce determination to look at this experience head on, did not get there too. In fact, her most popular tweet demonstrates she did, "Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere"
Cancer is not okay and what cancer does is not okay.  But a person living and dying of cancer?  We can find the beauty, we can be okay.

What can I say to mourn this woman? I didn't know her well, my loss is not a personal loss.  She leaves,  however, a deep and wide chasm of emptiness.  Her voice can never be replaced.   I want to scream into the abyss - why take Lisa?  Why now?  Why, why, WHY?

Of course, I understand there is no answer.  Metastatic Breast Cancer is a cruel, malevolent beast.  It steals who it wants,  takes them prisoner, tortures them,  then kills.  Still, women like Lisa are able to transcend the hell they are in and find purpose.  She has been an amazing teacher and documentarian of an ugly experience, and in enlightening others, she left the world a better place.  She inspired thousands of women with metastatic cancer to live in honesty and without anything hidden behind a garish pink bow.  We metsters can follow her lead.  In so doing, we can keep her legacy alive and allow her voice to continue to ring loud and clear.

I give my love to her family as they learn to deal with this tragic loss. I hope they can take comfort in how influential she was and how many people admired her.

RIP Lisa.




Saturday, February 28, 2015

Physical Fitness by the Decade

In elementary school, I was the last one picked for any team sport. Rightly so, embarrassing as the memory is.  I was short, skinny, wore glasses and was terrified of flying balls.  Consigned to the outfield during baseball games, I sorted through emerald blades of glass looking for ladybugs.  If a ball did come rocketing towards me, (and I noticed) I ran from it, pretending the sun had blinded me, using that line even on cloudy days.  I did enjoy tetherball, mainly because of the satisfying sound of clanging chains on those occasions I managed to wrap the ball around the pole.  Still, I could only play with one particular, softer, deflated ball.  Any of the other four, and my hand and wrist would blue and swell.

I was a delicate flower of a girl, all of 45 pounds, with the heart of a timid lion.

1960s home exercise with Jack LaLanne


Fitness for females was not yet a “thing.”  It began on TV as Jack LaLanne tried to teach our mothers to do Jumping Jacks in between cigarettes and before cocktail hour.   I suppose there were women who jumped right along with him, but not in my world.  My mother wasn't about to spill her Manhattan.  As for her little girl, I had to wear a dress through my early school years, and it’s hard to be athletic when the boys might see London and France.

In middle school, I was a popular girl, for the one and only time in my life - except when it came to athletic endeavors.  Because I was liked, I was picked second to last – team still comes first.  Climbing ropes in the gym hurt my ankles, running sprints hurt my ego.  When the Sylmar Earthquake hit and our school gym was condemned, I was beyond thrilled.  In my youthful imagination, I dreamed I could take an extra English class or would get free time, but no.  They put us outside in the cold of Southern California, where we played volleyball for the rest of the year.

See tetherball and swollen hands.

The underwear we all wore in the 1970s.  Such pressure!


I did not turn into a jock in high school.  By then I’d moved North and lost my popularity so nobody forgave my lack of coordination.  Last again.  I hated it all: the teacher, the ugly one-piece powder blue shorts outfit we had to wear, locker rooms, my knees and skinny legs showing for mean girls to judge along with my Saturday worn on Tuesday underpants and mother-bought white bra.  I hated everything they made us do.  But as high school progressed, I started realizing I could rebel.  If we had to run a mile for the President’s Fitness Test, my friend and I would saunter, not caring if the president thought we were unfit.  Eventually, I found I could avoid sports and all that would happen to me is a D on my report card.  An acceptable trade, in my book.

I wasn’t going to college anyway.



Could you do Yoga in those clothes?

As you may have guessed, fitness has been a very minor part of my adulthood.  Growing up when I did, there was no hot yoga, no Lululemon. In my 20s, I never thought about it. Hell, I was poor, I walked to work, walked AT work.    Around age 30 fitness tapes started appearing.  Jane Fonda with towering curly 1980s hair and a leotard cut up to her waist was the queen of the VCR, encouraging women to “reach it, reach it” from every living room.  The overweight chose to dance to the oldies with Richard Simmons, forever in sequins yet still not out.  Living in a bottom apartment with a fitness nut above was hell, as everybody exercised at home.    New trends came and went, kickboxing, aerobics, dancercise - now Zumba and Hot Yoga.  Fitness became part of everyday life, gyms sprouted like zits across the landscape, water bottles became a fashion statement, workout clothes moved from legwarmers to today’s Senator-repelling yoga pants.

In my 40s, I realized that I wasn’t getting younger, and by now, the message that had started with LaLanne - that fitness was the key to healthy old age - was firmly part of our culture.  LaLanne was still around, now in his 80s and hawking juicers.  Although I was still extremely thin (a much better thing in your 40s than in your teens) and appeared to be in shape, I feared aging and decrepitude. I decided now was the time.   There was enough variety out there so that I could surely find something I didn’t suck at and which didn’t feel like a chore.  Turns out, I actually enjoyed lifting free weights.

Problem 1:  I still didn’t enjoy the gym environment, full of sweaty and grunting males, probably wanting to judge my underwear.  Problem 2:  I also didn’t see results fast enough for my ADD self, so gave the idea of being a bodybuilder up.


This is why it was called Curves

Still game, I did Curves, the popular circuit training course for women.  Stepping on a mini-trampoline, I hopped up and down to enthusiastic music for 30 seconds, moving on to a bike and pumping for 30 seconds, then again hopping up and down and moving on to the next machine.  It seemed incredibly stupid.  I quit.  My job was physical enough, and I was up and down and walking all day.  I was still enviably thin and looked younger than my age.  I could pass as healthy.

It was good enough.

Then cancer struck at 51, and I did chemo and slept for five and a half years.  When I woke up, I was weak as a ninety year old and in pain.  I want to live again but cancer has taken it all: my job, my energy, my strength, my appetite.  How do I get it back?

I found Triumph Fitness and started again.

My first day sent me right back to high school.  It didn’t matter that the other women in the class were all cancer patients and not going to judge my underwear.  I was, again, the worst in the class: I had the worst prognosis, I was the least fit, apparently the oldest.  But I signed a contract to stick with it, and at this point, I can't outrun lawyers.

Our first exercise was a very complicated one called Standing Up.

I’m not kidding.  We had to stand up straight, balanced, knees flexed, toes loose, shoulders back, core engaged, posture perfect.   It was very, very difficult.  I was sore all the next day.  I am not kidding.  I realized then how much I’d let myself go and how much this disease has taken.

We also had to march.  Stand up straight, lift knees and march forward, like kids in a band only without the instruments. My ankles buckled, and each step I stumbled to the left or right.  My balance was completely off, and I wasn’t able to take two steps in a row.  I couldn’t believe how bad it was; I was actually shocked.    If I’d gotten stopped by a cop and he asked me to stand up or march, I’d be in the drunk tank to this day.   We did many basic exercises that, had I known they were going to give me in advance, I’d have laughed.  “Really? They think I can’t side step?”

I can’t.

Or, I couldn’t.   Eight sessions later and I’ve found my balance.  I can march without falling.  Standing up is just standing up.  What was lacking was core strength.  I hadn’t realized how much that matters even in regular daily life.

I’m used to our gym routine now:  we start with planks and bridges and cat/dogs, then go out and do our floor routine, which is leaning push-ups, one-armed rows, squats and other exercises designed to strengthen bodies weakened from surgery, chemo, and fear. Cardio is next.  I walk on the treadmill, five minutes at first, now I’m up to ten at 3.5 miles per hour.  I try not to look at the women who run next to me, pony tails bouncing.   I feel inferior still, but while I can’t do what they can – could they have done what I have?   If they were where I’ve been, where I am still, they would be walking too, and I try to remember that.  At the end, we go in and do yoga type exercises, stretching, etc.  I’ve discovered I’m relatively flexible, one thing I’m okay at.

 I do this for an hour and a half, twice a week.

I feel much stronger after 8 sessions, and I am only 1/3 of the way through.  Is my pain gone?  No.  Is my energy better?  Sometimes.  Has my appetite improved? Sadly, no.  Is my body stronger?  Definitely.  The range of motion of my bad shoulder has also improved by quite a bit, and I have had days where the pain is mild to zero.   I am almost able to reach my nightstand.

I have a hitch.  My food intake hasn’t increased although my exercise has.  My body is out of fuel and the car is starting to stall.  This is a harder problem to solve than it sounds, (just eat, they say) but I must.

I now realize fitness is something that I need to incorporate into my life permanently, especially since I lead a sedentary lifestyle and likely always will.   My plan to do some yoga or pilates once this is done – one of our trainers, who is certified in working with cancer patients, has a studio.  While it’s not cheap, I will likely workout with her at least until I find something closer to me or find my own path.  For now, I need the crutch of a trainer.  I still have a central line, I still am on IV treatment, my caloric intake is extremely low, and I still need to think about lymphedema, so I’ll take it slow, with professional guidance.

I’ve often advised those who come to me asking for advice about their new diagnosis to think about their post-cancer lives.  Even though they are brand new and are worried about starting chemo and progression, I remind them to put themselves in the winner’s bracket until told otherwise.   For most, post-cancer will be a fact and they will be living as survivors, even though at the beginning they are certain they are the losers.  What do they want that to look like?   Do they want to be stuck in the life and fears of a cancer patient forever, or do they want to move on?  This disease can be the catalyst for change, if you let it.

But I said that in the comfort of my chair; with a mets diagnosis.   I never thought I’d have to take that advice myself.

Well, I now have that same opportunity.  It isn’t easy, and I doubt I’ll ever love to do anything physical.  But I understand, deeply now, how necessary it is.

I don't smile that much - yet.






********

For Sacramentans, Triumph Fitness is a non-profit, and costs money to run.  They are always accepting new cancer patients, and you do not not have to be a metster or have breast cancer to join. The only requirement is you have had some form of cancer and a release from your oncologist.  And if you have any extra dollars to donate, I know they can use it.

Don't forget to sign my petition requesting that Komen and other major breast cancer charities donate 50% of their funds to researchers for the, actual, you know....cure.

Saturday, February 7, 2015

The Road to Health Starts with Getting off your Rear




Do you see what that says?

Yep, I'm still NED.  7 months since the last scan and still no cancer.  After all the torturous treatment of the past five years, I did the impossible.  Erm, I mean, my doctor and chemo nurses did the impossible.  To be honest, I just sat there.

And sat there.  And sat.  And sat some more.  Those barcaloungers at chemo are pretty damn comfortable, although embarrassingly, to this day I've never figured out how to get the footrest to open so I can put my legs up and actually lounge.  It’s one of those secrets that everybody else knows but me, and now it’s long past time to ask.

How long have you been coming here?” a nervous new patient asks me, legs stretched out and preparing mentally for her first infusion.

Five and a half years.” I answer, as surprise and concern crosses her face. I continue, “Hey, do you know how to get the footrest on this chair up?

Um, nope.  Too late.

So I sit.

I sit at home too and have for years, although my IKEA Poang chair is the closest I can get to a barcalounger.  I sit in front of the computer, in front of the TV, in a chair to read.  I’ve become quite the expert at sitting.  Since variety is the spice of life, I sometimes break it up with sleep. Well, truthfully, a lot of the time I sleep;  it's more like I'm breaking my sleep up with periods of sitting. There were days upon days when I did not get out of bed, or even wake up really.  Most of those periods of unconsciousness happened during the four years I was on chemotherapy, but I confess to doing a lot of sleeping even with the relatively easy antibody therapy I’m currently on.  I’m a 12 hour a night girl.  And sometimes I still take naps.

This is my second scan that says NED.  It is also a very thorough scan, finding every little anomaly, none of which are cancer.  There are sentences like this, "There may be subtle/minimal rebound thymic tissue within the anterior mediastinum" which would probably scare a healthy person just getting a scan for funsies, but it just means I'm recovering from chemotherapy.  And, said healthy person might be freaked out to read that they have multiple small calcified phleboliths along the pelvic floor, but I am just embarrassed.  Damn, I should have taken care of that.  As for the "mild chronic degenerative changes of the skeleton with mild spinal scoliosis?"  Honey, it just means I'm getting old.  Which in my case is a good thing.

On the whole, this PET shows that I am in pretty good shape everywhere, with the minor exception of a partially collapsed lung, (aka alelectasis at the right anteriomedial lung base, most likely benign).  It's not caused by cancer, so what what caused it?

It is caused by, perhaps, sleeping too much.

Seriously.

Still, the most important phrase is "no specific evidence of recurrent or metastatic breast cancer" and that, my friends, is like winning the Best Cancer Awards, or BCA.

Of course, after getting results like that, I did a certain amount of bragging sharing.  Indeed, I was flying high, crowing about my amazing NED status, even predicting that I’d be in the 1-2% of women who will survive metastatic breast cancer.  I’d be going down in the record books as cured, baby.   Me!  It's not quite the Guinness Book of World Records, but if I get listed in SEER as a metastatic breast cancer survivor who dies at 89 in a surfing accident, I'm good.

But then, of course, came the party poopers realists.  As I stood in my Dolce and Gabbana ball gown, holding the microphone, making my thank you speech and trying to remember to name my doctor's assistant, somebody pulled me aside to remind me that their friend had two years NED on Perjeta, however, cancer again came back and she is now on Kadcyla. Another person whispers to me that they got 18 months NED on Perjeta before progression and another chemo.  I remember my own doctor saying that he doesn’t know, that nobody knows how long this will last, if it will last - I am standing on the edge, he said.  There is not enough data - and none for the way I get my medication.  So I stop polishing my BCA and put it on the dusty shelf with the rest of the trophies – you know, the CDSCI (for surviving C-Diff Sepsis with Colon Intact), and the Quack, for watching the most daytime TV without ever once turning on Doctor Oz.

Still, I choose to think that I have gotten a miracle, albeit a secular, clinically-based miracle.  Unfortunately, this post-miracle body likes to sit, a lot, and is used to sleeping even more.  This body doesn't like to eat very much either and has developed food aversions.  This body has never recovered from the chemos and surgeries – it cramps constantly, has shoulder pain, back pain, abdominal pain, bone aches and a few misfires that I won't go into. Before, none of that mattered because I wasn't going to need This Body for long.

But now?  Now I now have a choice to make.  Even if the worst happened and cancer began regrowing the day after that scan, I'll probably be around at least a year or two.  I can continue to be weak, unable to climb a flight of stairs without experiencing heavy breathing and sore thighs, unable to put a suitcase in an overhead bin without the help of a flight attendant probably older than me. I can continue to feel exhausted by standing in line at a store because there is no place to lean against, and I can keep on sleeping 14 hours a day. Alternatively, I can get into shape and try to get myself at least back to where I would have been had I gone about my alternate universe life, where cancer had never struck.

(As opposed to my alternate, alternate universe life where I look like Jennifer Aniston, live in a house that has been featured in Architectural Digest, have money like Jennifer, but of course, still have my own children and don't have any paparazzi snapping my photo every time I leave my spectacular house.  Nor would I ever, ever, have to discuss my "craft.").

Whether I get in shape to become strong enough to withstand the next round of chemo, or to ensure I don't fall down in my older years, I won’t know.  But it is time.

I can live like a healthy person would, or like a sick person does.

To choose healthy,  I have to get off my flattened rear end and move. And, eat.  So I have.  I found a fitness program for cancer patients.  It is designed and implemented by a non-profit called Triumph Fitness, which gives us, for free,  several months of personal training in an actual gym.   It is a small class of six women, all of whom have had breast cancer, although I am the only metster.  We have two trainers who have extra certification in working with cancer patients and who understand our unique needs.

I've had four classes so far, and I’ll share with you in upcoming posts what it is like trying to claw your way back to fitness middle-age when your fingernails are still soft from chemo.

I can tell you right now that I have a long, long way to go.  I'm way more debilitated than I thought I was. I guess that just means there is nowhere else to go but up.








***
Please don't forget to sign my petition and pass it along to your friends and family and enemies and bosses and everybody.  The petition is asking Komen and the other large cancer charities to give 50% of their donations to research - that's it.  For them to listen, I'm going to have to get into the tens of thousands of signatures.

While I'm asking you for stuff, please don't forget to start your shopping at Amazon from the link on my page to the right.  I get a percentage of sales and it definitely helps me keep the blog going.

Sunday, February 1, 2015

Sign a Petition

I am still NED.  It has been 7 months that cancer has not reared its ugly tumor-shaped head and attacked my liver.  It now feels like maybe it never will again, that despite the odds, I am going to be one of the few metsters to beat this, thanks to the new drug Perjeta.

My world has opened up again, my perspective wider.  I think about the future, I plan and believe.  I am now working on regaining my physical health.  Five years of severe illness, chemos and surgeries has left me with wreckage; even standing is difficult.  I have started to exercise with personal trainers certified to work with cancer patients  to try to restore strength and energy.  More on that in the next post.

All good news has a downside  - I now believe I will live to see another October.  I'll have to be disgusted by yet another month of football players wearing pink, another month where the focus is on boobs and not disease, another month of using cancer to sell product and one in which the ribbon flies and everybody is a survivor.  Another month where death, destruction and disease is ignored.

Oh lawd, I still have a hangover from the last one, let me grab my oxycontin aspirin.

There is no escaping it.  October is now a national holiday, a month of pink cause marketing, where the story of triumph over illness sells products ranging from soup to nuts.  It is part of the cultural fabric of our lives, and as much as I know how off and wrong it is, how absurd the focus is - there is no changing it. Most people don't think deeply enough about it.

Is it too late for any good to come of it?  I started wondering, is this a total loss?  We will never change the culture, but what if we can start to change the flow of money?  It started out as an idea to be helpful - can it perhaps become that way again?

What if we appealed to the major charities - Komen especially but many others and requested that they spend 50% of their money on research grants?  And, ask them to be transparent in what they spend it on as does not happen now?

Let's let them keep their ribbons, their races, the pink everywhere, their name in lights and the partnership with fracking, alcohol and other companies.  Let them keep the illusion that "awareness" means something.

What if we could let them keep doing what they do, but convince them just give more of our donated money to researchers who are actually working on the problem of coming up with treatments "for the cure."  Not only medical researchers but people who are inventing technology, those who are working discover genetic mysteries and similarities and more.

For those of us with cancer, both metastatic and early stage - if we know money is being spent well, if we know that early detection is not the only focus of October,  maybe we will not want to crawl under the covers and stay there.   Maybe researchers won't have to beg for funds or, hire grant-writers, or waste time or drop projects.  Maybe money can flow easily to institutions and researchers that need it.

What if we asked the big charities to keep doing what they are doing, but to promise to give 50% of their money to medical research  instead of the average of fraction they do now?  And tell us who they are giving it to?

Can't hurt, right?

So I started a petition.

Please go read it, and then sign it.  Share it with your friends, and ask them to share it with theirs and on and on.  If we can get tens of thousands of people to say "this is important" they will have to respond.  And respond directly, rather than indirectly as in the past.

It takes time for institutional change. We won't change PinkOctober in a day.  But you have to start somewhere.   Maybe, just maybe, we can turn that flood of useless pink and the cliched story into something good - as it was meant to be from the beginning.  Maybe we can stop Susan G. Komen from rolling in her grave.  That girl needs a rest, I think.

Sign the petition and share it with your friends.  Thank you.

Saturday, January 24, 2015

"Just"




The word "just" got me in trouble the other day.

Deservedly.  I am bending over for my spanking now. Please be gentle.

Somebody had sent me a link to an article about an extremely attractive women with DD breasts who had been diagnosed with the BRCA mutation at age 19.  By 27, she had made the Sophie's choice to have a prophylactic double mastectomy.  I cannot tell you how much I admire that woman's courage in facing up to her odds of contracting cancer and removing body parts that were, indeed, quite spectacular.

As her surgery got close, she went down Road Obvious and threw herself a big good-bye boob party, with boob cupcakes,  treats, and boob-related decor. She got some press, perhaps because of her looks, perhaps not, (although articles did prominently mention her cup size).  Anyway,  I can't imagine this is a rare thing to do, but here it was in the media available for comment.   This event was touted as being empowering for women yet the entire article's core was on the loss of her breasts rather than the story I would have liked to see as a metastatic cancer patient: she is outsmarting cancer.  

It seemed to me that the whole piece, with pictures of her topless and photos of boob-shaped food, spotlighted the horror of a hot woman having a mastectomy rather than the triumph of avoiding breast cancer. The death of her mother and sister from breast cancer was mentioned - but relegated to a sentence, with nary a photo or name.

It is horrible to have a mastectomy.  Cutting off any body part is a choice nobody should have to make.  I know that first-hand. I can't imagine how hard it would be to do that before cancer had occurred, but I'm grateful that science has given her the ability to change her future. Unfortunately, the article said none of that; it was all about her coming to terms with the loss of her breasts.

I posted a link to that story on facebook, with the following comment:

"To be honest, I joked about a good-bye boob party too. Humor is the way I handle things. But that was before I truly understood the media event that is breast cancer, and the trivialization of a serious disease. This woman doesn't have cancer, she just has the BRCA gene. So I am sympathetic to her but I don't find these things "empowering" to women."

Oops.  The word "just" was the word people lasered in on and a few thought I was being dismissive of her, that I thought having the BRCA gene and having to go through what she did was insignificant.

Actually, I commented on it because I thought that her experience was MORE significant than the way it had been portrayed.

It was a very poor word choice, no question, and the whole thing was hastily and thoughtless written. That "just" didn't show that I honor that woman's strength, or those who have made the same choice.   She also certainly has a right to throw a party that helps her deal with a tragedy and which provides her comfort. I know a person can only be where they are, including me.  Five years ago when I started this blog, I only had a vague sense of the pink world and I, too, thought about having a bye-bye boob party (as you can go back and read.)   As I have gone through my various treatments, become metastatic,  and gotten deeper into the cultural and medical aspects of this disease, my eyes have opened.  My interest in writing about it has become one of encouraging the public to remember that breast cancer is a potentially deadly disease, instead of the current focus on pink and ribbons, bras and boobs. Although unclear, my thought process was about the event coverage rather than her decision to have a party. 

As a culture, we deny the seriousness of this disease.  If you don't believe me, just remember October.

In this case, it seemed that the media was mourning her insanely beautiful boobs instead of celebrating her chance at an incredible, successful life.  From my perspective, the article missed the point and followed the typical line of "save the ta-tas", which is why I linked to it.

I should never have used the word "just."  Mea Culpa.  I used a diminishing word and certainly didn't explain my point well.  Get out your paddle, I'm bent over and am willing to take it.  I did lose some facebook "likes" over that word, and trust me, each loss hurts,  but I have to admit, sometimes it's deserved.

But..... and there is always a but with an apology...it got me thinking...

Even if I had meant the "just" personally, am I not allowed to even recognize differences in experience?  Is it incorrect to think that one person might have had a more difficult time and thus more depth of wisdom than another?  Do we all have to be even?  Is being diagnosed with the BRCA gene and having a mastectomy always to be considered the same thing as living with five years of increasingly difficult cancer treatment and an incurable prognosis?  

Heck, I know there are people out there who have had it worse than I have, lots of them.  Lisa Bonchek Adams is struggling right now, with the spread of mets to her brain and liver. She's back where I was after c-diff, when moving ten feet was a triumph.   Roger Ebert lost half his face and had great physical suffering before his death. Many have suffered more, been through more, have learned more.  Many never got a period of NED as I have been fortunate enough to receive,  and many have died swiftly.   Do I think they had it worse than me? Yes.

Do I feel that negates my experience?  No.

Obviously, the word "just" was wrong and I didn't mean it the way it came across and when I realized how it sounded, I swiftly changed it. But if Roger Ebert had said to me "You just lost your breast, I lost my face" in the context of how people look at you - I wouldn't call him wrong.   How could I?

I especially wouldn't find him wrong if I'd known he had spent a lot of time and energy advocating for all people with facial cancers, even those who were not disfigured.  I think anybody can make a slip of the tongue, or fingers, and sometimes a "just" has to be put in context of an entire conversation or body of work.

There are differences in experiences, and what we learn from those experience can change over time and we should not be afraid to say that. I would have thrown this party six years ago but now I would find it feeding into the pink maw of misinformation.

No one can quantify suffering.  It should not be diminished by the word "just."  There is no question about that.  But my thoughts were about the media portrayal of her suffering.  Someday, I would like to see a story like this with a BRCA+ woman taking control,  but instead of a good-bye boob party, she would throw a Hello Life party, with world-shaped cookies and decor to reflect the future she has given herself.

It seems in the world of breast cancer, we often require DDs to attract attention, and once attracted, the point that this is a tragic disease is lost.

I just think that's wrong.






Sunday, January 11, 2015

Time Passes...

When my son was home from college, we watched the "Up" series - 7 Up to 56 Up, one per night. It's a fantastic documentary series, but it made me realize how impossible it would be to capture what has happened to any individual in 7 years.

If I'd been in this series, last time they filmed me I would have been a school secretary, raising my kids, healthy and happy, hopes for the future - for my children's lives,  thinking my husband and I would retire and perhaps move to Arizona where we'd travel, grow old together.

Cut to today.  Those of you who have read from the beginning know what a long, difficult road the past five years has been.   It would be impossible to share it adequately in a ten minute TV segment, and so what they would show is a woman who appears happy and healthy.   The years of worry, pain, fear, acceptance - all would be glossed over.  And they have changed me so much that I believe these have been the most important years of my life.

The Soul Pancake people did a good job of capturing the love I feel for my family and what living with disease is like, but it's hard to get the day-to-day struggle I have experienced and still am going through.   It is also impossible to understand the amazing experience it is to still be here after having very little statistical chance.

Oh, I can describe what I've been through in a short paragraph.  "I was diagnosed with stage II breast cancer in 2009 and had a mastectomy, chemo and a year of herceptin.  Metastatic cancer was found in the liver in 2011, and since have had a liver resection, ablation, 7 chemos, SBRT, nearly died from C-Diff Sepsis,  and finally achieved remission with the Herceptin/Perjeta combination."

That describes the story - but doesn't tell it.

Can one?  People are visual, and I don't really have many pictures of myself as I went through it, but could I tell the story in a short time with what I had?  

I did a little short video with flipgram to see if I could sum it up.   This barely skims the surface.  But here it is.



I have a PET scan coming up.  I have pain in my right side that I honestly believe is scar tissue and not cancer, but we have to check.  I hope it shows I'm still in remission but won't be disappointed if it doesn't.   I think it will be fine though, and on the 21st I start an exercise class for cancer patients to try to control some of the pain and strengthen my body.  I am clawing my way back to that woman of five years ago.    I once again have plans for the future, different ones than before.  Now have to include medical treatment every three weeks, and all that comes with that.  I am not going to leave the state, I'm not going to start over with new doctors and insurance, and I am not healthy enough to travel, at least not yet. But I have plans just the same and that is miracle enough.

I look at the people in that Up series a little differently because I understand that there is no way that their experience can be captured accurately.  Think back over the past five years of your life - can you sum it up in ten minutes in such a way that people understand all you have experienced?