The e-mail update no one wants to send or receive (from 12/13)

(I finally sent this out December 10, after 3 weeks of working through what was going on. Maybe it will serve here as background for anyone I didn’t include but should have, who has now found the blog.)

Dear friends near and far and old and new,

Some of you have known me since before my second round of breast cancer and some of you have not, but I think all of you know that it is part of my history and what makes me who I am. I’ve had frequent follow-up and annual mammograms and MRIs since 2006 as I went about the business of living my life, raising my kids, and becoming a midwife. Now things have gotten sad and complicated. The annual MRI that I had in mid-November showed a mass in my sternum, lymph nodes enlarged nearby, and some suspicious spots on the left side of my chest. Nothing had ever been seen on my MRIs before, including 12 months ago.

So I had a followup PET scan the week before Thanksgiving, a breast ultrasound that showed nothing, and a long wait for the scan results, which turned out pretty bad, but they could be worse. The short version is, the PET scan confirmed all of the above, plus showed a suspicious nodule in one lung. (“You can stop now, really” I said to my oncologist as he kept listing the findings one after the other.)

A week ago I had a bone biopsy on my sternum which confirmed that the mass is cancer, and this morning we had appointment with my oncologist to discuss it all. No treatment decisions have been made yet, but I am signing up for some version of chemotherapy, possibly in Boston at Dana-Farber as part of a clinical trial of a new and promising class of drugs–so traveling to Boston or Albany for IVs and feeling icky numerous days per month for the foreseeable future. The feeling icky is maybe the thing that has me the most pissed off, besides the greatly enhanced likelihood of having to deal with dying, and being taken away from people who need me, far sooner than I bargained for.

Of course this is going to have quick repercussions in all parts of my life, starting with graduate school (I’m just finishing up my 4th of 7 full-time distance semesters in the Certified Midwife pathway at Philadelphia University’s Midwifery Institute). Since treating cancer is, in my experience, like a really rotten half-time job, and I am already stretched to the limit with school, family, programming work, a few births, my volunteer work with the Midwives Alliance of North America, being part of the Quaker Intentional Village-Canaan, etc., I am taking a leave of absence next semester (I might take just one course, the research one). We’ll see what I decide to do after that–no need to know right now. It will depend.

I’m not sure how much energy and focus I will have for birth work, programming, and volunteering in the near future; that will also depend.

And that’s where I am abiding right now–in a space where everything depends. Will I be home Friday afternoon so Jesse can have a friend over? Well, I think so, but if my doctor calls and tells me I have an appointment at Dana-Farber, then I won’t. Am I starting chemo week after next? Don’t know. If so, should I schedule meetings and calls? Don’t know. How will I feel in January? I have no idea. Am I going to New Orleans in two weeks to visit my mom for the holidays? I certainly hope so.

What I do know is that I am keeping on trying to live my life, be a mom, be a midwife. (Also finish the darn semester!) I have a great family, a fabulous husband, a community around me, and good and strong friends, plus health insurance, and a medical team I trust. This totally sucks, but it is also who I am now, instantly, with one phone call from my surgeon on November 15, and I don’t get a choice about that–just about how to go forward with it from here.

I wanted you all to know. Forgive me for not being able to tell you all individually; telling people, kind of out of the blue, has been a really hard part of this for me.


P.S. People want to know what they can do, and there is one concrete request I’ll make. There have been two people I know who have lived for years with metastatic cancer. One I can still talk to and get advice and “anticipatory guidance” from; one I can’t. If you have someone in your life who has been through something like this and who might be willing to share a bit of his/her experience with me, I would find that helpful, maybe hopeful. Thanks.

One thought on “The e-mail update no one wants to send or receive (from 12/13)

  1. Tia

    strength, power, and sincerity are bursting through this page Ellen. Thank you for even sharing your story! I just had another sudden and close encounter with a friend that reminds me of so many valuable lessons. Spend each moment in life with joy, embrace each blessing, and laugh/smile/love. I virtually embrace you and send my prayers.

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