Sunday, March 30, 2014

Exposed and raw and very real

Dear all,

Thank you for calling & emailing to check up on me. I have not written much these past three weeks because, well, I have been busy! I seemed to have sailed through the first round of chemo. Blood levels stayed good, energy really, not too bad. Last night, Paul & I taught a beginning East Coast Swing class at our dance place & then danced the night away. I am 3 days into my 5 day fast and gearing up for #2/4 chemo treatments tomorrow.

I am doing my best to reframe my infusion time into some kind of R&R. Have my bag packed for this "trip," with my modified fast, food morsels and beverages, portable Scrabble, a little sewing project, my NOOK. I am most of the way through O Pioneers, by WIlla Cather, evocative in the sweetest of ways of my early married life in Nebraska. It's so slow moving, gentle and calm and completes my descent into the world of milquetoast distraction.

In other positive moves, I taught a bit last weekend in our course in Amherst and had the class over for dinner, serving our usual salmon fillet & lots of other goodies. Now that's how I like to run this ship! Sophie stepped up to hostess the evening, too and her leaving yesterday has left a big gap. But I cannot complain, her 6 weeks home was healing and nurturing to me in profound and I imagine, lasting ways. Misha was home this weekend, too, sharing his enthusiasm about his work and other projects, which is infectious. I admire the industry of my children. 

Paul & I will visit Jonah in Chicago in a few weeks. Feels good to make plans and create adventure. Three months honkered down on the farm has been fine. I have not been bored or lonely or too tired or particularly sad, but as I can feel the rush of spring trying to make her entrance, I feel itchin' to get out and do my usual and more social & community things. So, my local folks, email me for a date!

The whole focus on healing, though I know it's essential, is a bit of a nuisance. And really, I never felt sick, except to recover from the trauma of surgery. All activity restrictions were mercifully lifted last week, so I am happily back into yoga, to raising my arms over my head with some effort and much joy. Stretching up and out with a big yawn may be the most delicious and satisfying thing I have ever done.  I practice mindfulness meditation each day and keeping up with positive visualizations of pristine health and no cancer cells running amok. I have an image of small sparkly ball of light that I slowly move along through my entire body, taking inventory and naming parts (I was THAT 1st year naturopathic medical student who was BANANAS  over anatomy, and remarkably many of those small parts' names stuck!) I  instruct all systems to cooperate, do their jobs, integrate and metabolize pharmaceuticals and leave me behind intact & thriving. I follow that up by embarking on my daily prayers, to give thanks for my many & ongoing blessings and to ask for help for those I love who need it. I swear, it's a full time job all this intentionality! These skills, which I have worked to develop over the years are gaining further clarity and muscle and I'm glad time to put it all in action. That said, going ballroom dancing for lessons or a social dance clearly remains my best medicine.

I have thoroughly enjoyed the evolution through various haircut styles & currently I am rocking the buzz cut. See below for my genetic profile with Misha (to the right here.) Turns out he & I have the same haircut, the same hairline, the same head shape & profile!

At first this buzz was a bit jarring, but now, I now rather like it. It's bold, it's brave, it's chilly! All I can say is, if you ever think to do it, here's my advice: you walk into any room you are going into with your mojo ON, with excellent good posture & a big smile.

Of all things, it feels empowering; there is no artifice whatsoever, you are exposed and raw and very real. Not a bad place to be.
Love & light,

Wednesday, March 12, 2014

OKAY! Chemo: one down, three to go!

It really was not too bad. The worse part was when I opened my thermos to take a sip of my (camping style, rehydrated, overly herbified, watered-down-modified-fast of a) soup, and a determined droplet splashed directly into my eye! 

Actually, the only real discomfort was the four- read it, four--stabs it took for the nurse to find my vein. And there I thought I had done such a good job hydrating, going for a lovely sun-drenched walk beforehand, visualizing happy, paten, blood-filled welcoming veins! Next time, will ask for Sue, the nurse who got it, instead of the younger, albeit earnest and lovely, but less experienced gal.

Could have been nerves causing vasoconstriction; that said my nerves were fine & dandy before the first stab. But it hurt like the dickens as she wiggled and waggled and wrangled that needle around, sort of digging, not really sure what for! Had half a mind to grab the needle & do it myself!  So, we took a break, I did some alternate nostril breathing, drank a bunch of water, (should have brought the vodka!) went for some laps up & down the hallway and sat back up on the throne of a recliner chair. I file this kind of thing under little bumps in the road. Emphasis on little. When something hurts like that, my mind goes immediately to stop #1: how much I love my life and love my family; I can get through anything. Nurse Sue got it straight away and we were off & running.

I did bring the nurse crew a small tin of homemade chocolate chip, oatmeal cookies, why not? And think I have everyone’s name memorized to boot. I like calling people by name.

I did not feel anything at all during the 3 hour infusion; now have my mind's eye focused on the powerful chemo drugs that kill the crap out of any wayward cancer cells that might be floating about. 

The 5 day modified fast has been fine, though I am looking forward to eating in the morning! I am truly in love with the uber-spiced up kale chips, but I need a bushel full, not the teacup full allotted each day. It’s embarrassing licking the inside of a bag.... Burgers sound more like it and ketchup, too. Dreaming of crème brule with raspberries & cream.

During the drip, drip, drip of infustion, I played a game of Scrabble with Sophie, had a kick-ass 7 letter word: SPATULAS and beat her roundly. I feel okay saying that. I cannot throw any more Scrabble games to offspring. Though I taught everyone in this family how to play, I CANNOT often win a game. Also, we watched my first episode of Dowton Abbey while at the hospital, so that will be a fun, easy distraction in the coming months.

Thank you again for all your love and care, your cards, your gifts, your visits, the spectacular food, the foot rubs and of course all the prayers and positive energy you continue to send my way. I feel it everyday, I will be forever in debt. 

Spring is chomping at the bit- not a minute too soon, grateful for the timing over here, the longer days, the true warmth of the midday sun.
Love & light, AMY

Here's a panoramic view of our kitchen, with 100s of your cards adorning. 
When we sit in here, we absorb it all!

Friday, March 7, 2014


I am learning that having a diagnosis of breast cancer comes with lots of unknowns. It's a bit like being told you are getting to go on a trip, but no one's telling you exactly where, what to bring or what you will actually be doing there! And by the way, we may decide to change destination! As an itinerant traveler who loves an adventure, mostly I have framed this whole experience as such.

In that vein, I had been zipping along the past few weeks, in that sweet spot between breast surgery and chemo, way less discomfort, more energy, great gym workouts, working a bit, mind crystal clear. I felt like I could hit the ground running with chemo to begin 3/10/14. Then I got a few bits of information that were challenging.  I learned that my oncotype number, which measures 21 different markers in the tumor itself was higher than we'd hoped. Our doctors at MGH had not wanted to run this test, thinking that regardless of the number, they were going to recommend chemotherapy. For a portion of the population with breast cancer, the oncotype number is super low, reflecting that the chance for recurrence is also low and that chemotherapy does not offer very much improvement in the odds. Because I am young and otherwise healthy, the assumption was, no matter how low the #, I would do chemo, for even a slight improvement in statistics, I'll take! What we had to point out with some urging to the oncologist was, what if the number was high? We really had to advocate for them to run this test and in the end, I am really glad we did. As I have written before, it almost doesn't matter what the problem or challenge is; you can develop a plan. But having the best information to inform decision making is essential. Bottom line, to stop any wayward cancer cells, should they be there locally, I will now likely add radiation treatments after chemo to my springtime destination plans! Don't relish the idea, but feel it's the right choice knowing what we now know.

Because I am healthy and robust and have a few pounds I can spare (not THAT many!), I will be using a modified fasting protocol in the days leading up to chemo & right after.  Our normal cells are quite adaptive to such changes, whereas cancer cells, if there are any floating about, are not. They are not adaptive to either starvation or chemo, so this is a way to hit cancer cells from two sides.  I am using a protocol that is currently being utilized in a number of  trials. I had an inside line to the people running the trial  (thank you Rena!) and have my kits stacked up and ready to go. Think here: a few granola type bars, a small bag of kale chips and two packets of dehydrated soups spread through the day. Sticking to my travel theme, I have reframed this into my own personal camping trip, only with a better mattress!

So as I said before, we are planning the dive & will dive the plan and will accept the unknowable aspects as best we can. I will lean on all my tools of mindfulness, prayer, visualizations, being open to love and +++ thoughts from all of you and my highly developed skill as a superior napper, as I begin this next phase in earnest. 

Having Sophie home has been a tremendous gift to me on every possible level. Paul blows me away with his ability to parse out information, do research and be rational while at the same time be deeply loving, caring, and funny. God, I owe him big time. Misha and Jonah are good about checking in and the newsiness from their lives they share so openly, is perfect distraction.  I feel like every ounce of energy, time and creativity I poured into being a mother and nurturing this family is coming back to me in spades. How blessed we truly are.

In other good news, I found a super cute wig, the no silvery gray streaks is kind of fun, I can now see why some people choose to dye their hair! As soon as I put it on Paul said, "Ohmigod you exactly how you looked when you gave the speech at your college graduation in 1982."  I'm telling you, people can really pour on the bull$%^&* !

For those who still have energy to send prayers and good thoughts my way, here's the request: "May Amy tolerate treatments well and return to vibrant health."

I hope all is good in your lives and that the oncoming warmer and longer days will bring with it all the promise of spring.
Love & light,

First haircut before chemo -not bad!