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.

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.


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.