Friday, May 15, 2015

Sole Story

I spent the past few years thinking I had one perk - I wasn't going to get old.  Of course, the life I've lived would be a horror to most people, but being a silver lining kinda gal, I started imagining all the things I would avoid by dying:

Falling and not being able to get up
My face melting into my neck
My earlobes dangling down to my shoulders
Having to google "attractive hairstyles for 75 year old."
Being called a "senior citizen" or worse, "old lady."
Having to wear orthopedic shoes
Needing false teeth.
A boy scout wanting to help me across the street.

Getting old sounds kind of scary and problematic.  But here I am, at the moment, NOT dying of cancer and now starting to face the problems of aging, as well as other things that crop up for normal people.  Sometimes, I don't even know what is regular old aging and what is the side-effects of treatment.  If my hair thins, is it because of treatment?  Is it damage from all the chemo?  Or is it just something that would have happened anyway, being post-menopausal?  (Plenty of women who never had cancer have thin hair).  Why is my finger joint bending a bit to the right?  Is that cancer? Treatment? Aging?

I (like every cancer patient) have a tendency to blame chemo and cancer for pretty much everything that happens to my physically.  It is the great dividing line of blame in my life.  Before cancer, I blamed general body foolishness.   Now - cancer.  Even if it might have happened anyway.

Some things, I can't blame on cancer.  But because of cancer,  I'm not sure how to deal with them. Take, for example, an ugly but common problem:  The bunion.

Bunion on the left, in case you can't tell.  

I have a bunion on my left foot, and have for years.  Before cancer.   I'm not even sure when I first noticed it, but it never hurt me, it didn't interfere with wearing any shoes, and it was generally one of those weird "things" that you ignore.

Fast forward six years, 7 chemos, four surgeries and some radiation later.   Now, of course, it hurts. Why it never hurt on days I wore five inch heels, I don't know, but now that  I have been barefoot for pretty much the past 6 years, it started getting worse.

It was probably the Gemzar, don't you think?

So it's ugly, yes.  But who cares, I'm alive.  When I started my exercise class, I realized that I was not walking properly due to that bunion.  I was putting my weight on the side of my foot and avoiding the big toe.  How long I'd been doing that, I don't know.  But I have had pain in my knee, hip and lower back, which I assumed was from chemo/treatment.  What if it wasn't?  What if it was from the bunion, and I'd been protecting it by my walk, causing pain?

So what do I do?  Of course,  I have no intention of doing a voluntary surgery, and bunion is voluntary.  After c-diff, I am not taking any antibiotics.  My white cell count seems to be permanently low, so I don't want to risk infection for a foot, especially since I can't do antibiotics.  I don't have the lifestyle where I'll be needing to put on a pair of Louboutins, so that's not an issue.

But I am worried about aging now, and maybe becoming a fall risk.  Walking on the sides of one foot is not safe when you are 80.  And while I've got a few decades before I get to that age, I now at least can consider that it might happen.

So I have decided to self-treat.  My goal is not to fix the appearance of the bunion, as I know that won't happen without surgery.  But I want to fix the way I walk and put pressure back where it belongs, and I want to see if I can stop some of the pain.

I searched Amazon and I found a "bunion splint."    I kept searching, and found one for $10.00.  It will stretch the ligaments of the toes and put the bad toe back in the proper position, at least while I'm wearing it, which I do at night.  Sold.

Kind of gives that RoboCop feel, yes?

I bought a toe separator, bunion protector.  You can wear this with shoes and it will protect the skin as well as stretch the ligaments of your toes.

It's more comfortable than it looks

I also bought a gel arch wrap, which somehow allows you to put pressure on the proper part of your foot.

And, I bought some Vionic Shoes

They adjust right across the bunion part for super comfort!

Yes, they are orthopedic shoes.  My friends all know I loved my pretty, pretty shoes, but those days are long gone.  Or so I thought.   For years, I've been wearing flats, Tom's specifically. Being short, I missed a heel.  When I saw these, they were very attractive to me, because they are adjustable across the instep, which means nothing pushes on my bunion and also because they are a wedge, which gives me height.  And, I can wear my toe thingy or my wrap with it - or not.  As I choose.  The shoe bed is comfortable and makes me walk the right way.

And, maybe I am aging and my tastes are changing, but I think these shoes are as cute as they are comfortable.

So my friends, I do not recommend that you treat yourself, if cancer rears its ugly head.  Get yourself to an oncologist, stat.  But if you have a bunion, you might want to try these methods and see if they help you.  I do feel like the pain in my knee has eased up.  I'll let you know how it goes down the line.  But I'm pretty happy with these methods and these shoes are amazing.  I'll probably get another pair, or two.

Maybe getting older isn't so bad after all...

These are called the Glenda Wedge Backstrap Sandal

Saturday, May 2, 2015

SXSW Part 2

One thing I wanted to do at SXSW was go to the Gaming Expo and visit Ryan Green, whose family was featured on one the Soul Pancake documentaries (as was I.)  Ryan is creating a video game based on his experiences with his toddler son, Joel, who tragically died of his cancer.  He had crowdfunded the game -That Dragon Cancer.  I financially supported him, as did many.  His game will be out this year.  More importantly I feel an emotional connection to him and his family.  I followed his posts avidly and felt I'd come to know this family as they dealt with this most terrible of tragedies.  I admired the way they are surviving and am awed at the grace of the human spirit.  They have included their son in the game: his laughter, his voice, and have recreated scenes they experienced with him.  It's quite beautiful.

When I heard Ryan was going to be at SXSW, seeing him became a priority.

SXSW Gaming Expo
I walked into the gaming expo, which instantly reminded me of my early casino days, working as the skinniest Keno runner in history.  Outside was a bright, sunny day, light breezes blowing, the Texas flag flying.  Step inside and you are in darkness, with glowing neon signs and the sounds of electrons talking to each other.  There were rows upon rows of games - many of them ones you (or your kids) know, and many new games you've never heard of.

I had no idea how I was going to find Ryan so I did it the old fashioned way: down one aisle, then up the next.

Did I mention that I was the oldest person at SXSW?  I think I did.

Eventually, there it was, That Dragon Cancer.  Ryan and another developer were talking to somebody else, but Ryan recognized his cyber stalker and said, "Hi Ann."  We chit chatted and he asked if I wanted to play his game.  Naturally, I wanted to see what he'd been working on in person, so despite my unfamiliarity with gaming I grabbed a controller and sat down.

As an aside - my kids, of course, grew up playing video games.  In a way, I did too - Pong came out when I was 16, and I spent many years in arcades and bars playing Galaga and Centipede, which I became quite good at, often seeing my initials, AMS, listed as a high score.  But the home systems passed me by - as a busy mother I didn't have time to sit down and play, although raising two boys, we did get many new systems, from Sega Genesis to the Nintendo Wii and everything in between.  There was one exception to my playing video games:  I did get into Animal Crossing for a while, and I had to learn the controller.   When my interest in that game waned, so did my memory of how to use it.

So when I saw down to play Ryan's game, I was apprehensive.  I couldn't remember what button to push and couldn't smoothly navigate the joystick and couldn't do those things in a crowd of people who were all there as experts.

Did I mention yet that I was the oldest in the room?

Still, with help from Ryan, I managed to get around.

Immersive was not the word for what I experienced.  As I began the game, the clanging noise, the lights, the crowds faded away and I was transported to a playground, where I played with Joel.  I fed ducks for him, manipulated playground equipment for him, listened to his laughter and looked around at the trees and scenery.  I ended up in a hospital where, by using a See and Say, I heard the bad news about Joel's prognosis from all angles - his parents, the doctors. They spoke in their own voices, making a poignant scene all too realistic.    The virtual room started raining soon, dreadfully,  filled with water, thunderclaps bringing on feelings of alarm.  The human voices faded out, the rain filled the screen, water rising, and I wanted nothing else but to be out of that room and away from the horror, feeling a visceral dread.  And, mercifully, that is where the demo ended.

I put down my headphones shaken, tears in my eyes.  I sat for a minute, trying to recover and process what I'd experienced, taking deep breaths.  I gathered myself, got up and just hugged Ryan.  There was really nothing to say.

He is winning awards for his game and I recommend you check it out and follow him on twitter and elsewhere. If you can donate to him, please do.   There isn't much else like it out there.  Not only is the game a touching and immersive experience, they are using this game to creatively honor their son's memory. The love and care in it shows.


Olivia M and Me.

I've been a  member of an online group of metastatic cancer patients for a few years.  These women all live in Austin and get together regularly to talk treatment and cancer stuff, as support groups do. They also have an online component.   The reason I joined another state's group is because I had a wonderful friend named Sandy Kugelman who was a member. Sandy was my cancer buddy, completely sympatico with me.  We laughed, we cried, we talked about the political and personal side of cancer.   We chatted nearly every day, sharing everything about our experiences. I still have many hundreds of messages from her.  She, also, had liver mets.  She, also had a son my age, and another older child.    She mentioned her group and suggested I join but as a Californian, I felt I didn't want to intrude. Two years ago, Sandy died.  I was as bereft as a person can be never having met the person in question.   So I joined the group.  If she liked them, why not?

And these ladies are wonderful.  They are everything you would want in a support group: educated, sharing, caring, intelligent and kind.   They are up on the latest in oncology: new therapies, clinical trials and treatments.  They understand their disease.  So when I went to Texas, I had hoped to meet some of them.

And I did.

 A meet and greet was arranged for me at a historical building, an amazing place filled with books and history.  I met women from the metastatic league and their supporters. I got the warmest welcome, full of food, laughter and conversation. There is nothing like this where I am, or at least that I know about.  The women all have mets, and they support each other, help each other and relate to everybody's experience in a non-judgmental way. Best of all, for me, they were all science-minded.

There were supporters too. Husbands and fiances, all of whom were there to encourage their partners.

We laughed, we shared our experiences, we discussed what's new in cancer treatment and the problems we experience in being metastatic.  It was truly an amazing experience.  I honestly felt like I wanted to move there after meeting this group.

Princess Reema

There were many speakers, from Jimmy Fallon to Malcolm Gladwell.  But the one I set time aside for to see was Princess Reema of Saudi Arabia, whose biography is here.  She splits her time between SA and LA, and is very interested in breast cancer awareness programs in her country.  Unlike the US, which I believe has no more need for awareness, in SA women are relatively disconnected from their bodies.  They must keep them covered, they are not educated about them and don't have the freedom we do to discuss this publicly.  A recent study I read stated that even the women who attend college there don't understand much about breast cancer.   So I am very supportive of her goal.

When I went to see her talk, I was very impressed.  There were several messages to take away from the things she said.  One, very important one, was not to compare. This was in relation to her living part time in a country that is repressive to women, and then part-time in Los Angeles.  She says if you can accept each place for what it is and has to offer and you don't compare, you can live a good life. And I feel like that is something we can all use in our lives.  We should not compare our current lives with our past, healthy lives.  We shouldn't compare our lives with the lives of others.  The message is to just live where you are and take (and give) what you can.

She is planning on having the biggest breast cancer awareness gathering in the world.  On October 25, over 10k people will gather in Riyadh, SA, to support the effort and hopefully get into the Guinness Book of World Records.  Please go to to add your support.

I was fortunate enough to be able to talk to her privately, and she also came to my talk.  I was able to convey the position that many of us here take - that awareness has been achieved in the US, and that the effort has stagnated.  Awareness is the logical first step, but then there should be another step after that, which has been forgotten by the large charities in this country.  We must move on from awareness and into putting money towards something that will lead to a cure. (Do you hear me Komen Foundation?  No, I know you don't.)   Princess Reema is incorporating solutions within her awareness campaigns, for example, there are plans to do automatic testing of tumors as they are diagnosed for further research.  The potential to cure breast cancer starts in a lab, not a mammogram machine, and I believe she understood that point of view.

As I told her, a win for women in any country is a win for women in all countries, and I will look forward to see her success.  I don't believe she intends to repeat Komen's error and treat breast cancer as a marketing event and forget it is a disease.


And then, there was my talk.

Me and David Kopp

Making a point

I had been very nervous about it, mostly because it was a format I was unfamiliar with.  It was called a Core Conversation, which meant everybody in the room was supposed to participate. I'd searched online for weeks trying to see one but YouTube failed me.  My partner, David Kopp of Healthline, and I were to talk  about the problems inherent in curing breast cancer today, with him being the moderator and me being the "expert" and with everybody else in the audience supposed to dialog with us.

When the event started, I realized my purse had gotten tangled up with my necklace and badge, and as I stood in front of the audience, untangling it, removing jewelry and putting it back on and laughing, whatever fears I had melted away.  I felt very comfortable.  Heck, everybody had just watched me practically undress, how much worse could it be?

The room seated 125 and I believe it was about half full, surprisingly.  David and I had planned some questions and answers and discussion points, but we mostly felt that we would let the conversation flow where people in the audience wanted it to flow - our plans were just in case nobody said anything.  Fortunately, everybody was engaged.  People shared their insights and a wide variety of topics were explored.  We talked about how big data could help, how pharmaceutical companies could help, what had gone wrong and what could still go right.  People shared their own experiences and insight.  Everybody was enthusiastic, lively, had a unique point of view and we had a very good discussion.  We recorded it so hopefully it will be on video and I can share it with you at some point.

This was my first time speaking in public and I found it very easy, mainly because I was just talking and being myself, about a subject I feel passionate about.  If I'd had to memorize something with this chemo brain, I'm sure I'd still be on that stage, stuttering away.

If I ever do it again though, I will not be wearing those pants.

So a month later, there is my SXSW experience.  It was unforgettable, and I'm glad I went.  Although I didn't change the world, I had fun, shared my ideas and met some great people.

And, who can complain about that?  Not even me, the oldest person in attendance.

Thursday, April 9, 2015

SXSW, Part 1

On March 15, along with David Kopp of Healthline, I moderated a core conversation at SXSW. Being selected to do this was a great honor, and it wouldn't have happened without you, my regular readers.  So I obviously want to share some of my experiences with you.

What is SXSW?

South by Southwest, or "South by" as the natives call it, is a huge technology, gaming, music, interactive and film conference held each year in Austin.  It's hard to describe how much goes on. There were hundreds of talks by thought leaders in their respective fields, showings of new films and music by new bands as well as video game demos.  There were robot petting zoos, a maker zone, a job expo, a trade show, a comedy section, and so much more.   Keynote speakers range from Jimmy Kimmel to Malcolm Gladwell to Al Gore to Princess Reema of Saudi Arabia.

It is busy and crazy and full of passionate and interesting people sharing things they love and are knowledgeable about.  If you are old, like me, and are worried about the millennials, take heart.  They are smart, socially conscious and full of enthusiasm, even if they are glued to their phones.  Austin itself is a lovely city, growing rapidly, in part because of this conference  The energy sizzles. It's a wild west of ideas.  Natives though, stay away, as crowds and traffic overtake their city.

SXSW is full filmmakers, music producers, technology experts, all people full of enthusiasm who tend to the younger end of the spectrum.    Most of the people I saw were in their 20s, maybe a few 30s.  My grey head was the only one bobbing and darting (slowly) through the crowds of people, and I'm sure a few wondered why somebody had invited their grandma.  Standing in the line to get their badges, I couldn't help but notice that everybody around me could be my grandkid.

Although I'd heard about this festival, I had no clue what to expect.  I applied to speak on a lark, spurred on by Healthline. I only know I have a topic I feel strongly about, which as you all know is metastatic breast cancer, the end of "awareness"  and the need for more money to be directed towards research.  Over the course of the past year, I have learned that the search for a cure for breast cancer is insanely complicated and much more problematic than I had thought when I started this process, and in the future I'll focus my blog on some of what I've learned.

One thing has become crystal clear:  early detection is not the alter we can lay our hope to end breast cancer.  We tried awareness and early detection, and in 30 years, raw breast cancer deaths have actually gone up, by quite a bit.  We now know that no matter how early breast cancer is found, in some cases it still spreads.  What we don't know is why.  And in that "why" is the key to cure.  So that is what I was there to talk about.

I wrote an article on this topic - please share it.

In moderating a Core Conversation, I wasn't giving a speech - good thing because with chemo brain I can barely remember who I am much less keep an entire speech in mind. The goal was talking to others who had ideas, experiences and who were interested in the topic and getting them to open up.  David was the true moderator, directing the conversation and asking questions, and I was the "expert" having been in treatment, reading a lot about it and sharing a personal point of view.  I will share the success of the talk in another post, and there is video that has not been released yet but at some point, I can hopefully share with y'all, as the Texans say.  But a lot of other stuff happened during the five days, some exciting, some touching.  So here are my random thoughts.

Traveling with Cancer

I arrived midnight on the 12th, with our talk to be held on the 15th, which gave me a few days to adjust to the time change.  I'm in a weird place in my life - healthy enough to finally be able to travel and do things like this, but not healthy enough for it to be easy on me or even really enjoy it. Recovery, once home, literally took a week.

Most people think that when they are diagnosed with an incurable cancer, that they would travel and go on adventures.  The truth is, for me and many others, if you are in treatment, you are too sick to go anywhere.  Despite what you've heard, chemo is not a walk in the park and it makes travel nearly impossible.  When you do chemo after radiation after surgery- for years- the most traveling you do in one day is from bed to couch, and your dreams change from a Hawaiian beach to a hot bath.

Now, after being NED for a year, I am better. Not healthy by any means, but I can do it.  I'm not spending 3 days unconscious in bed, or staring out the window at my birds.  I can move.  I'm exercising.  I'm able to go shopping (although not without pain) and I can get up at the incredibly early hour of 10:00 a.m.   Yet, travel is physically demanding, and I don't look forward to it.  (Whine ahead!)  If I stand up for more than a few minutes, I have stabbing pains in my side.  There is no explanation for this, and so no solution.  My back hurts.  I get headaches easily.  My shoulder and right side is weak.  Carrying bags is hard, walking is hard, keeping odd hard.   I only have about 5 hours a day in me before I crash and burn (or take a ritalin to keep going) but, I must remember, that 5 hours I more than I've had in years.  Progress is incremental and because a cliche is in order:  it is not where you are now, it is how far you have come.

Eating is one of the most difficult things I face - I must get calories into my body but somewhere in treatment I left my appetite behind, and not only don't I feel hunger, it physically hurts to eat. I hover at 94 pounds and that is worrisome to my doctor.   Being off schedule makes it worse.  I think I only ate twice during my five days in Austin (not counting fruit for breakfast. (Those two times were pretty good though!)

We stayed at the Hyatt Place in Downtown Austin, central to all activities.  The Austin Convention Center was right across the street, the Marriott where my talk was held was two blocks away.  So I was situated perfectly.  The hotel staff was solicitous and kind, and the place was spotless and contemporary.  But there was a serious problem - the room only had a shower, no bathtub.  For a person whose bones ache terribly, and who walked 4,000 more steps per day than normal (which is 40)  a hot bath is a necessity.  I missed a bath every day that I was there.  Like the proverbial starving person talking about burgers and pizza and ice cream, I kept talking about baths and hot water.

So, here I was, at one of the most exciting and youthful events in the country, nervous about my upcoming talk and noticing my age and infirmity,  and longing desperately for a hot bath.

Would it be worth the pain?

Thursday, April 2, 2015

Semi Colon: Book Recommendations from the Bottom of my Pile

A sad fact about cancer is it took away one of my life's most pleasurable activities - reading.  I've been a reader since I was a little kid; some of my best days were spent outside, holding a book as big as me, sitting in the cool shade of a tree on a hot summer's day with a glass of ice water and a slice of white bread.  I became immersed in the lives of people far away and in different generations as grass tickled my legs and ladybugs buzzed about. I've been a hooked reader since Dick and Jane chased Spot, and I had thought I'd be a reader on my deathbed.

But something changed.  I assumed it was part of chemo-brain because I began having trouble concentrating on books.  I'd pick one up and put it down again, fretting at not being able to remember who was whom or what was happening.   I'd start chapters and pages over and over, even lowered my reading standard.  Eventually, I just give up. Reading was, for the first time, not fun.

This was my secret shame.  I told no one.  Losing my love for reading was worse than losing a breast, or a job.  It was like losing my soul.

But it has been about 18 months since my last hardcore chemo and I've been on only Perjeta/Herceptin and Zometa since then. People have been sending me books all along.  And I discovered that I finally have been able to sit down, read them and enjoy them again.  This is almost as much a miracle as my continued survival.   I don't know if chemo brain is wearing off - I do feel a bit more focused, at least as much as I can within my ADD capability.  Or perhaps something else is happening.   Whatever the reason, I don't question.  I just am happy.

But I still have a large stack to go through, so I will share some with you.

First up, we have Semi Colon,A Writer's Cheeky Journey Through Colorectal Cancer, by Neil Crone.

Neil Crone is a well-known Canadian comedian, having appeared on television in a variety of shows. He also is a columnist, and it is from his columns and email blasts this amusing and often heartwarming book was drawn.   Diagnosed with Stage III colon cancer, Neil's essays and thoughts during cancer treatment include everything from his enjoyment at being at home (even though his dog didn't treat him with special care), to relating a car ride while managing a "hair-trigger colon." And who Canada, you apparently get an actual cancer card!  There are, of course, the obligatory hiney jokes, and who am I to complain?  I've made plenty on the other end.

No matter what cancer you are diagnosed with, I think we can all relate to what Neil shared.  Humans are very much alike when it comes down to it, and when looking death in the eye, most of us end up feeling the same way - recognizing the importance of family and love, and the necessity of taking time to enjoy and experience a really good sandwich.  (Or, in my case, a hummingbird.)  Neil's book is hopeful, uplifting and funny.  Each chapter is interspersed with quotes that also provide inspiration. I do think that it is a must-read for anybody newly diagnosed with colon cancer or really, any kind of cancer at all. It's not so much about his treatment as it is what he learned by going through it.  Many cancer patients are looking for that light at the end of the tunnel, and Neil's book shows it is there.

Next, a book about managing breast cancer treatment, called Living Like A Lady When You Have Cancer by Donna A. Heckler.

So I confess, the title threw me off a bit.  "Living Like a Lady" made me think she'd want me to put white gloves on and pull the teacups out, and after C-diff, there is no hint of lady in me anymore, and all my gloves are medical-grade.

The idea that her writing would be prim and proper was quickly dispelled as I read the book. She talks about all the things you should know about managing cancer treatment that you might not be told by your doctor or nurse.  The tone is more like your best girlfriend is giving you realistic advice as you go through the mastectomy/radiation/chemo process than it is a manners lesson.  She gives quite fine advice too, not holding back, telling you what to expect at each step along the way.  In a conversational style, she tells you how your hair will fall out and not to be surprised about where it happens.  She gives advice on creams to use for radiation and chemo, how to handle hospital visits, what chemo complications might exist, how to manage support, etc.  And, like me, she urges you to drink your water!   There is so much more; I think she covered every topic a newbie to cancer would want to know.  It is a very comprehensive book, with pull-out boxes sharing what she wrote in her blog at the time it was happening to her. Because medical timelines are often different for different patients, this is not a book that has to be read in order.

She advises living life "radiantly."  Like Neil, that means appreciating each day for what it's worth. In writing about post-cancer life, she says she doesn't believe in finding a "new normal," that the old normal is possible after treatment.  Sure, she understands that that life after cancer will change, as it does for all of us, but says that maybe the changes are what should have been your previous normal, which is an original and refreshing viewpoint.

I really cannot recommend this book enough to the newly diagnosed breast cancer patient.  If you know somebody who has just been diagnosed, this will make a great gift, providing numerous tips for managing breast cancer treatment, and rest assured, she definitely discusses unladylike topics!

And last but definitely not least, The Smile Never Fades -- Compelling Essays by Breast Cancer Survivors by Bill Bastas.

I met Bill at SXSW and was instantly charmed by him.  He had sent me this book to review 6 weeks previous and I'd flipped through it,  but in preparations for the event that led me to him personally, I didn't have time to really go through it or blog about it.  I'm happy to make up for it now.  Bill's book is a series of photographs of women who had breast cancer, taken with their pets, along with essays they'd written about their experiences and how their pets had helped them.  It is a unique idea to put in a book but not one unknown to cancer patients.  We always mention our husbands, children, friends when we talk about the support we get in dealing with a dread disease, but our pets are a big part of comforting us too.  The years I was terribly sick and spent a lot of time in bed a cat was next to me 24/7. (She has since died - of cancer.)   My dogs have never cared if I'm sick or not,  making me get up to let them in or out for forcing me to walk whether I want to or not!  They lay a head on my lap or play, giving me a reason to smile.  Pets are part of our lives and acknowledging them this way is brilliant.

More than a unique book is what Bill is doing with the proceeds.  Bill has a personal experience with cancer, and has set up a charity in Texas called A Smile Never Fades.  He spends the money on what he calls a "Comfort Concierge" providing women with housekeeping services, transportation, food, or other needs that women with cancer face.

People have often asked me what charity to donate to.  Aside from the big one I support, StandUp2Cancer, I always suggest that people find these local charities - they are in every community and are usually run by incredibly smart and dedicated people with caring hearts.  They are not out for money or glory - they are trying to help people and give them exactly what they need. During my sickest, darkest days, a clean house was a gift beyond measure, and I cannot support Bill enough.

The book I linked to is not his only book - he has several others, including a cookbook.  So please search through them and buy one.  Not only will you see and read the stories of remarkable women, you will be helping out a wonderful cause, started by a remarkable man.

On another note,  I want to congratulate fellow blogger, Renee Sendelbach on her book Renee in Cancerland.  I haven't read it yet so I cannot give a review (I will in the future) but you can read her blog at Team S and get a feel for her writing style and story.  Or just go ahead and buy it without waiting for my opinion!  Renee is a metster blogger who was diagnosed at only 30 and is still with us 6 years later.    Her book is bound to provide comfort and insight for younger women facing this disease, and give hope for anybody diagnosed with metastatic breast cancer.

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.