Stupid, Stupid Breast Cancer - An Apology to Jill

Yesterday afternoon, at about 4:30 p.m., my sister-in-law Jill Bernstein passed away after what everyone will call a long "battle" with breast cancer.  She was diagnosed at about the same time as I was in 2010, but her disease had progressed much further than mine when it was first found.  She had the best doctors, the most advanced treatment in the world, and my brother would have gone to the ends of the earth to find that one medication that would be the "miracle."

And, for a while, some of those toxic cocktails worked.  She did not have any surgeries, but every chemo out there that could be tried, was tried.  She had good days, and she had awful days.  And things looked very hopeful for a while, although no doctor (including my own) will ever say of breast cancer that it is gone, and it was never in any way "gone" for Jill.

She was amazing - my niece and nephew are pretty wonderful kids (and I will say that because they are still kids and that is awful too) and my brother is a better person for having had these 24 years with her.  She could pick up the phone as she was waiting to go from blood testing to chemo treatment, sitting in a hospital hallway, and call me just to pass the time.  Although I never knew her as a child - we both grew up on Cape Cod but she was almost 8 years younger than I am - for some reason we could talk for a long time, or not talk for a long time, but we could talk.

I am so, so sorry that we did not talk enough, that I did not have the courage to pick up the phone in these last few months, to call just to say....I don't know what I would say.  She was already not well enough to make the trip here for Andrew's wedding, and at our nephew's Bar Mitzvah in April she looked to be in pain, but I did not know it was because the cancer had spread to new, bad places.   I thought she was sore and stiff from treatments.

I am not sure how many times I have to learn this lesson.  One of my dear friends, also named Jill, passed away near the end of last August from a cancer that was diagnosed less than a year earlier.  And again, I had no idea how close to the end it was when Ari called (she was his best friend's mother) to tell me the news that she was gone.  I cried then, and I cry now.

Only I cannot go back and say anything to Jill to let her know that I loved her indomitable spirit, that I loved how patient she was with my sometime impossible "baby" brother, that I loved how she handled her son's innumerable food allergies when he was young.  (I think he couldn't have egg, wheat, peanuts, strawberries, tomatoes, chocolate....and goodness knows what else.)  But she did it all and his big sister, my niece is a beautiful person and a beautiful dancer and a caring child and I don't know what to say to her or her brother.

We are not geographically close, and we have never really been "physically" close; it's just the way our family tends to behave.  But it is at times like this that I cry for a sister-in-law, for a friend who was nothing but kind and loving to me, and one more person whom I did not have the strength to see beyond my own fears to comfort.

http://brezniakrodman.com/obituary/bernstein-jill-meredith-weiner/

A Night to Remember

Friday night, May 17, 2013.  It was a 7 p.m. "family" service.  Dad was down from Cape Cod for Andrew and Jackie's wedding, Andrew and Jackie were there for their aufruf, their Torah honor and special blessing before their marriage, lots of Jackie's family was there for the aufruf, all the teachers were there for Teacher Appreciation Shabbat, lots of grandparents were there for Grandparents' Shabbat, and I was there for "Honoring Rebecca McVeigh for her 10 years of service" night.

O.M.G.  It was amazing.  Ari was singing with the adult choir, the junior choir sang, for the first time ever my kids had a grandparent to go up on the bimah with for the grandparent blessing, we had a cartload of teachers and aides on the bimah for me to thank, and then they started thanking me.  I tried so hard to be "in the moment," as we tell our Bar and Bat Mitzvah parents to do, but boy oh boy, that was tough. 

Lucky for me, we had started live streaming our services and they were saved in archives so later (much later, like last week) I went back to the archive video and actually watched what had swirled around me.  There were flowers, my friend Terry, who NEVER speaks in public, got up and spoke, there was an album of notes that people had written to me...

Then there was a plaque, such a beautiful plaque, and so heavy I still haven't figure out how to hang it up - but I will!

And there was a beautiful tallit, which I do not have a photo of, yet, but it's all soft purple with photos of Rod and the boys and it has a quote taken from the famous "A Woman of Valour" text.

The fact that this was happening on this night was not a surprise.  After all, they needed to know I'd be there, right?  But all of these things - they were surprises.  Such thoughtful, lovely, loving surprises.

And so I had to thank them back:

My teacher Rabbi Mosbacher says we should never waste an opportunity to thank people, so….

Thank you to all my partners in this work, which includes the teachers and aides, students of all ages, and the lay leadership. In particular I am grateful to the presidents of our congregation during these years: Harvey, Ranan, Art, Harvey, Ritch, and Harvey….  My dad says I’m crazy to actually enjoy what he calls “temple politics,” but I don’t think it would be quite so enjoyable without the kind of leadership we have. HARVEY – thank you especially for being the one to let me in on all the fun.

Thank you to Iris, whose personal AND professional advice is pretty much always correct.  Lisa, you help me remember my priorities when things get a little crazy, which is so helpful.  Walter, some days the most important thing is the logistics, and you make sure the school is good to go, even if I don’t always know where that is.

Thank you to everyone involved in planning tonight, and for successfully keeping secrets despite the fact that not much goes on in this place that I don't know about.  Thank you to teacher/friend and advisor Terry Sitomer, and her able successor as chair of the Education Committee, Lauren Einhorn.   Between the two of you, I never feel like I stand alone.

Cantor, I have told you this before, but like the word that means both wind and spirit, ruach, you too embody both.  Your beautiful voice and ready humor lighten the load and enrich the spirit.

I would not even be up here tonight without Rabbi Mosbacher, who convinced me in the summer of 2003 that taking this position would be a good idea. I only said yes at the time to help out until we could find someone who was really the "right person."  Rabbi, you thought that person was me all along, and apparently, you knew something I did not.  Thank you for your continued confidence in my abilities.

To my 3 brilliant and beautiful “EMs” – Ellen Mass, Evelyn McGilloway, and Elyssa Mosbacher – you and your families’ friendship over the years means so much to me.  I am wealthy beyond measure in your steadfast affection.

Thank you to Andrew, Alex, and Ari who are the most loyal, loving sons a mother would want. I could not even begin to imagine what I would have hoped for in my children, but whatever it was, you have made it come true.

Thank you to Rabbi and Laurie Weinberg of blessed memory who greeted our family as friends 16 years ago when we arrived as strangers.  He encouraged me to get involved in the education committee as if he could see what was coming.  Rabbi Weinberg taught the intro to Judaism class Rod and I took before we were married.  So I really, really wouldn't be here today without Rod. 

Thank you Rod, for bringing me here, for supporting our children’s Jewish identities, for enabling my renewed Jewish identity, and for helping me through the ups and downs in every part of my life.  Your love has helped me to not just BE, but to thrive, and to not just DO but to love what I do.  

 Thank you.

And I very nearly didn't make it through without crying.  Frankly I was crying at everything during those days; getting ready for the rehearsal dinner/wedding (5/19 and another blog post) Alex graduating from college (5/24) Ari graduating from Kadimah (5/21)  it was really one big sobfest waiting to happen.  So I decided to just look down at the paper and "get 'er done," to quote one of the Blue Collar Comedy guys (which one, I no longer remember.)

It was such a joyful evening, I hope that the families of younger children who optimistically thought they'd be out of services within an hour managed to hang in there.  And Iris ordered me a most beautiful cake for the oneg :)

It was all really quite perfect.  I bet my Grandma and Grandpa, my Nana and my Pop-pop, and my mom (especially my mom) would've loved it, too.

Hi Ho, Hi Ho, it's off to Dr. D. we go....

I remember Dr. D'Amico saying "Come back after the wedding" so I did.  I brought my dress with me, since he's always asking me to wear something slinky to take photos of.  Since I don't wear something slinky on a regular basis (unless you count the amazingly lightweight full length modal nightgowns I got from Kohl's a while back) this required bringing the dress to the appointment, and changing into it, and hoping the effort was worth it.  So this afternoon Rod and I showed up for my appointment complete with my mother-of-the-groom dress in a bag, and as a little surprise I put it on instead of the laughingly-named paper "gown" to wait for the good doctor. 

Totally worth the effort.  He called in not only his nurse, but someone he was training (for what, I don't know; she certainly didn't know much about breast cancer/treatment/reconstruction.) AND he asked for photos.  (Then all the girls in the office wanted to see it and where did I get it and their son is getting married and ooo it's so light and silky and how come THEY didn't find anything at Nordstrom's as nice as that?)

Then I disrobed and gave him my own inexpert opinion about why the scar on the right is dark and brown and wide while the scars on the left are thin and pink: since the temporary expansion that was done on the right was done sort of beyond what he knew he wanted (on purpose) not only did it stretch the skin gradually, but it also stretched the scar as it was healing.  And (she takes a bow) I was right.  As a matter of fact, he was kind of sorry that I hadn't left it to the trainee to try to explain :)  Which she couldn't have done anyway.  Hah.

I swear I am not becoming (or have I ever been, Sen. McCarthy) a plastic surgery addict.  HOWEVER, I will never want the aureola etc tattoo as long as the only thing that draws my eye is this brown line across what I'm supposed to make myself believe is a breast.

I have always known that the "soft tissue deficit" pockets which are actually kind of hollow places created by the original mastectomy, still exist to a certain extent.  But after the liposuction that gave him what he used to "transplant" fat was so very uncomfortable, to say the least, I had figured the hollows were here to stay, and I'd just have to live with them.  I knew a lot of that fat had, technically, died (hadn't latched on to a blood supply) and hadn't done its hollow-filling job very well. Today, after he said that scar revision was absolutely on the menu for a next step, he said I could store "coins for the toll booths" in those little pockets of nothing.  And then he convinced me to go through another (much smaller-scale) fat transplant procedure to try to correct this some more.  He showed me where he would take it from, and call me gullible, but I trust the man.  And I'm not-so-secretly relieved that he feels the hollows should go, if at all possible.

I'll tell you what else he wants to do, that I figured I'd just have to live with - the right mound (that's what we in the biz call reconstruction sites) sits a bit lower than the left one.  You'd never notice that, but I sure do.  It has something to do with the fact that the left implant has support from all that extra muscle from my back, and the right implant is just "regular" - so supported by one muscle and some skin.  (The downside of the left-hand radiation that caused the whole thing to go bad right from the get-go turned into the upside that the "back flap surgery" creates a better outcome.)  So, the left sits higher, and the right has, as he said, "settled."

He says that while he is doing the scar revision, it's time to lift the right a bit to match the left.  Now, who wouldn't want that?  I do!  I do!

He's off to Europe for a few weeks, and knowing him it could either be for a fab vacay or it could be to do free surgeries on children who need it - he does both.  He says we should try for after we get back from Cape Cod, and he's got the one employee who has been there since this whole odyssey started - his office manager Marie, to check on the insurance stuff.

(Marie, by the way, showed me her mother-of-the-bride dress that she just picked up today, and it is beautiful too.  After the wedding she's going to use it for her ballroom dancing competitions.  Marie is very cool and strong enough to survive working for Dr. D. all this time, AND she always says "don't worry about the money" and then she's right, so she is my hero in more ways than one.)

So, this thing was on Facebook today, and I love it, and I hope I can do it, EVERY DAY.