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.