Friday, March 7, 2014


3/7/14

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,
AMY

First haircut before chemo -not bad!


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