Marilyn Rang the Bell! and NED is My New Favorite Name

There are few things as satisfying as reaching the best ending to a story. There's that awe moment followed by a smile...and the smile lingers! As those of you who have been following my blog know, my sis-in-law Marilyn was diagnosed with breast cancer last September. (Read Nov. 11 blog posting, "Helping Hearts.") I could use up all my words describing what "treatment" entailed (and still not get it right) nor do I want to. That's not what this is about.

This day is for rejoicing, for celebrating, for breathing a long-overdue awe and for smiling.

I'll let Marilyn tell you her news, her way! (excerpted from e-mail note, Mar. 13, 2012 entitled "10 Days After")

Hi Everyone!

Thank you, thank you, thank you for all your love, support, humor, and so very much more. I've made it through my last chemo treatment and the hardest days that follow chemo. I feel good, am able to get out, drive, swim, take restorative yoga classes, and then rest as needed. My mind has more energy than my body so I have to watch what I think I can do versus what I actually should/can do.

I've never been a  big fan of "losing" an hour each spring, but this year the gaining light matches my coming out from under the cloud of the last 6 months of cancer treatment. Like the light, the dawning that the chemo is behind is coming slowly as I absorb the reality. I saw one of the oncologists this morning, not my primary one, to get the needed results of blood work at the 10 day mark after Taxotere chemotherapy. It's the point  when the blood counts can be at their lowest. All were in great shape. The way any meeting with an oncologist starts is with side effect:  "Is it normal that all my teeth feel like they have cavities?" "What should I do about this red rash on the top of my  hand?"  "Still have tingling in fingertips and some pain." I forgot to ask, "Do you think these fingernails are going to fall off?" (Losing fingernails sometimes occurs with Taxol and Taxotere.) Not that any of these side effects are big concerns, the tingly/numb fingers are the worst of them. It's kind of interesting to see what happens.

When I happened to review the list, the brutal mental/emotional testing made more sense. By this last treatment, the emotional part was much, much better. I think it being the last treatment helped in a couple of ways that I wasn't aware of before. First, I wasn't having to unconsciously conserve my energy for the treatments coming. There was a certain amount of steeling myself for the long run that I wasn't aware of. Second, again unconsciously, I was always wondering how long the various side effects were going to last, if they would increase in intensity or be long standing: sores in mouth, nausea, diarrhea, fever, pain, numbness, etc. (I list these here for a look into the experience of chemo.) There is a term "the new normal" that is batted around a lot, meaning there will be side effects that will stay with you after treatment that weren't there before. One new normal is the numbness on my underarm after surgery on my lymph nodes. It feels like I'm putting deodorant on over clothing. I'm very fortunate. There are many, many side effects that I don't have.

I asked the doctor today what I should call my present state --post cancer, cured, what? He said that I was "no evidence of disease" (NED) and that my breast cancer has been "treated."

"NED" is what I think I'll throw around at cocktail parties. The drugs that I'm taking now, one he called a heat seeking missile, significantly reduce the chance of cancer returning.

At the cancer center, when a patient finishes the final chemo treatment, she/he gets to ring a bell. I was a little shy about doing it, but it was very satisfying once I did.

NED...the name has a lovely ring to it!

Helping Hearts

What Inspires: Outreach I'm finally able to write what is on my mind. You know how it is: saying a thing (or writing it, in my case) makes it real. So often, when a thing is really sad, or bad, or scary--or all three and more--we hold off putting words to it in hopes that it won't be so. But it is so. My lovely, lively sister-in-law Marilyn is battling breast cancer. Marilyn just finished her fourth round of chemotherapy and is facing surgery, more chemo and maybe radiation treatment. If I were she, I'd be curled up in a ball in the corner somewhere. But Marilyn has laughter in her heart and so she is trying on Andrews Sisters-style wigs

(hopefully for Halloween and not every day wear hair), rejoicing because the side-effects of the 3rd chemo were less debilitating than those of the 2nd, and sending love notes such as this: "... So, all of you, know how fabulous you are and how much I appreciate your love, care, and humor. And even when I don't hear from you or see you, I don't doubt that you're rooting me on...and know, I'm in your corner too."

Because our health care system is what it is, even though Marilyn has insurance, she is still being slapped with massive medical expenses. In an effort to alleviate some of the worry of having to scratch up the money to pay for treatment so Marilyn can, instead, focus her energy where it should be focused--on beating the cancer and regaining vigor, friends organized a benefit for her. It was a grand and loving event but it didn't raise all the funds needed; please contribute if you're able. And join me in sending Marilyn light and healing energy.