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.


  1. I'm happy about your NED. No whispers of doubt here. Someone has to be the "1". Could be you.

    I never could get the foot rest up either!

  2. You have a well of strength that I can only admire. If my body was weakened by disease and its subsequent treatment, I'm afraid that is all the excuse I would need to just stay in bed forever. Good for you for pushing through and making yourself go to the gym.

    1. Believe me, I feel like it often. But I spent a LOT of time in bed and getting up sounds better. :)

  3. I've only had 6 visits to the chemo room and I'm in recovery mode now. I can't imagine what it must be like going through it for 4 or 5 years. It's strangely reassuring to hear other people talk about sore thighs and soft nails - my body is still quite far from better. I wish you well with your mission to get your strength back, you're doing a great thing. And how wonderful to be NED - hooray!

    1. I have to write more about it because the transition isn't easy. It isn't easy with six visits either, but with hundreds it isn't only visits, it's a way of life, I mean I lost my job, my health, my kids are gone...what do I do now? Very strange to feel this way but I'm working to get back to whatever will become my regular life.

  4. Hi Ann,
    You had me chuckling all the way through this one. I am so glad you are still NED. And good for you for taking the class. Keep clawing! And I did sign the petition. Good luck at SXSW. I'll try to follow and tweet a bit. You'll be great!

  5. Hi Ann,

    Congratulations. I am so happy for you! Celebrate!

    I was diagnosed with a recurrence about 7 months ago. I was only equivocally HER-2 positive. My Onc. Prescribed Xeloda and I was not thrilled. After a mild tumor marker reduction, I asked to try Herceptin/Perjeta. The Onc balked and I persisted. I began infusions about 2 months ago and my tumor markers have been plummeting ever since. I don't know if I will get to proudly exclaim NED but it is quite promising. While we may not see significant changes to treatment protocols in our lifetime, I think it is paving the way for drugs that are quite possibly MORE lucrative than chemo.

    God bless and keep us posted!


    1. I'm very happy for you! I hope you continue to see success. What we really need now is a way for doctors to use our information, since we are unusual cases.

  6. I have been unable to sign, can we make a paper copy to walk around with?


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