Sunday, June 24, 2012

Mundane, Normal Stuff

Earlier today I was in the kitchen cutting up some chicken and thinking about my friend Phyllis.  I’m not sure that the two things are related in any way except that I’ve been thinking about Phyllis and her family a lot since her six-year-old, Superman Sam, was diagnosed with leukemia two weeks ago. 

This morning, though, I was remembering back to January when Phyllis was in New York for a few days, attending a program at HUC, and I was lucky enough to get her for brunch on that Sunday morning.  While I prepared the strata and the fruit salad, we caught up over coffee in the kitchen—everything from our latest reads and the price of toilet paper (she gets hers from, to blogging, other social media, and our many mutual friends.  Just mundane, normal stuff. 

Mundane, normal stuff is exactly what I’m wishing for Phyllis right now.  A r’fuah shleimah (a speedy and complete recovery) for Sammy, and a quick return to mundane, normal stuff for his ima (mom) and the rest of his family.

Please keep Sam in your prayers (send him a photo of yourself as a member of his superhero team) and may he and his family get back to mundane, normal stuff faster than Clark Kent can find a phone booth and change into Superman!

Friday, June 22, 2012

Why I Can't Go to Dunkin' Donuts

If Mark Leyner and Billy Goldberg can write this book, then surely I can explain to you why it is that I can’t walk to the Dunkin’ Donuts across the street from my apartment.


It’s really very simple, but not exactly “polite” conversation on a “family” blog.  At the risk of TMI, however, I’m going to give it a shot.


On Tuesday, I had the second (and what I hope will be the last) of the surgeries to reconstruct my breasts following a prophylactic bilateral mastectomy (PBM) last July to help ensure that I don’t get breast cancer as the result of a BRCA2 genetic mutation (which puts my lifetime risk at somewhere around 85%). 


The initial surgery last summer took12 hours and included both the mastectomy and immediate reconstruction of “breast mounds”—the technical term—using a microsurgical transplant of fat, tissue and blood supply (perforators) from my abdomen.  (You may be more familiar with tissue expanders and silicone or saline implants, which, for a variety of reasons weren’t for me.  I opted for this more complex surgery, the longer recovery, and earlier this week, “phase 2” of the process.)


Tuesday’s surgery involved cleaning up the initial incisions (including the “dog ears” on the 18-inch abdominal incision), using liposuction (resulting in terrific bruising) to make the left and right sides approximately the same size and shape, and creating nipples.  Following the surgery, I was wrapped in shoulder-to-groin compression garments, which had to stay in place for 48 hours.  Yesterday, I was able to shower (heaven…) and, per the post-op instructions, continue to use the abdominal binder, which is similar to the support band the FedEx guy wears around his waist and lower back to help him deliver all those Zappos boxes.     


The newest body parts, however, (created larger than “normal” because they will shrink, the docs say) are to spend the rest of the recovery period (not sure exactly how long that will be) without any compression or restrictive garments of any kind.  And so it is, that despite a desire for a bit of fresh air and a walk (I know, it’s 96 degrees and humid outside), I am not comfortable (even in a dark tee shirt) walking to the Dunkin’ Donuts across the street from my apartment.


A first-world problem, indeed…

Sunday, June 17, 2012

It’s Déjà List All Over Again

As anyone who reads this blog with any regularity knows, I’m a list maker.  Before my 2010 surgery, I blogged about my to-do list.  The post about last year’s list is here

With yet another round of surgery coming up on Tuesday (a same-day procedure to tweak what was accomplished last summer), it’s just about time to share the list I’m working from this time around, which basically tells you what I did this weekend, and what I’ll be up to between now and Tuesday morning.

Since Friday afternoon, I have:

  1. Paid all bills that are due between now and next Monday
  2. Ordered Fresh Direct groceries that were delivered this morning
  3. Attended the TST minyan and Torah study
  4. Played mah jongg and had dinner with friends
  5. Celebrated Father’s Day with Daddy, LZ and yummy dim sum in Chinatown
Here’s what’s left to do tomorrow:

  1. Change linens and towels
  2. Do the laundry
  3. Clean the apartment, including running the vacuum and sweeping the floors
  4. Empty trash and recyclables
  5. Confirm details of Tuesday night with R, who has generously offered to stay overnight
  6. Open foldout couch; place pillows and clean towels
  7. Pack a few things for Tuesday:  phone, ear buds, case for glasses, hair band, and a pillow for the cab ride home—to put between me and the seat belt
  8. Await phone call from the hospital re:  arrival time on Tuesday morning
  9. Check-in with S, who will meet me at the hospital at no o’clock on Tuesday morning
  10. In consultation with yet another friend, A, use EKG leads and instructions from the plastic surgeon to decide upon placement for the new body parts that will be created during Tuesday’s surgery.  (If you have no idea what I'm talking about, use your'll figure it out.)  It sort of makes me LOL to think that with so much high-tech "stuff" available, this important decision gets made with such low-tech equipment, used in such an “off-label” way.  Commenting on this phenomenon, another friend couldn’t help himself when he noted in an IM message, “Who says you don't "lead" an exciting and interesting life?”  My response?   Groan…
  11. Shower using Hibiclens
  12. No food or water after midnight
 And here’s the list for Tuesday:

  1. Shower using Hibiclens
  2. Meds with just a sip of water
  3. No make-up, deodorant, powder, lotion or sprays
  4. Arrive at the hospital at no o’clock
  5. Yet again, tie on the bungee cord and take a leap of faith.
See you back online in a few days.

Wednesday, June 13, 2012

My Three Names

Last night, one of my BRCA sisters sent me this link to a TEDMED 2012 talk by Dr. Ivan Oransky, executive editor of Reuters Health.  In it, he criticizes this country’s broken healthcare system and doctors who diagnose such conditions as “pre-diabetes,” “pre-hypertension” and “pre-acne” because they are incentivized to order tests, perform procedures and prescribe drugs.  Not quite six minutes into the 10-minute video, Dr. Oransky describes “previvors” as what a “particular cancer advocacy group would like everyone who just has a risk factor, but hasn’t actually had that cancer to call themselves.”  He then suggests a “Previvor” reality television show in which participants who develop a particular disease are voted off the island.

His remarks demonstrate a deplorable lack of knowledge about cancer genetics, outrageous insensitivity to individuals and families affected by BRCA gene mutations, and a horribly distasteful and dismissive attitude toward those in the hereditary breast and ovarian cancer (HBOC) community.

Dr. Oransky’s comments bring to mind this Jewish teaching:
Every person has three names:
One her father and mother gave her,
one others call her,
and one she acquires herself.
Given the opportunity, here’s what I’d tell Dr. Oransky about my three names:

My father and mother named me Jane Ellen.  My name in Hebrew is Yehudit bat Reuven v'Dina.

Others call me many things:  Jane, Jane-O, Hane, JanetheWriter, daughter, sister, niece, colleague, friend.  

Among the numerous names I’ve acquired for myself, one is “previvor.”  Unlike “New Yorker,” “graduate student” or “writer,” though, it’s one I didn’t want, one I wouldn’t wish on my worst enemy, and one that has caused me deep physical and emotional scars.  At the same time, I’m lucky to have discovered my status as a “previvor,” grateful for the science and technology that make “previving” possible, and satisfied with the tough choices I’ve made to remain a “previvor.” 

Most of all, though, I’m incredibly proud to belong to a community of caring, giving, supportive women and men who—regardless of what, if anything, we individually or collectively choose to call ourselves—bring to bear outstanding knowledge and information, strong self-advocacy, cutting-edge research, and thoughtful, calculated decisions about medical and surgical interventions, all of which we use to save our own lives.

Friday, June 1, 2012

For You, The Mums: Kaddish from Jerusalem

Just a little while ago I returned from synagogue, where my mother’s name was read from the bimah as I stood, preparing to recite kaddish, marking the second anniversary of her death.  My father will do the same in his synagogue next week, which is when her yahrzeit will be observed there.

In the meantime, because of an IM conversation I had yesterday with a friend who’s currently visiting in Jerusalem, he also said kaddish for her tonight.

The conversation went something like this:

Me:        Boker tov.

Friend:    Good evening from Jerusalem.

Me:         Ahhhh...lucky you!  Enjoy, be safe, and eat a falafel for me!   When are you back?

Friend:    Next Thursday.

Me:        Enjoy.  Have fun!

Friend:    Want me to bring you anything?

Me:         Just eat a falafel for me...

Friend:    Consider it done.

Me:         One more thing:  If you're at services, it's my mother's yahrzeit.  She'd love to know someone  said kaddish for her in Israel....

Friend:      Consider that done as well. Tomorrow night with the IMPJ.

Me:          Perfect!  Thank you!

Friend:    She'd like that.

Me:        I know!

So, The Mums, I hope you appreciate that tonight—from the east and from the west--we were thinking of you, remembering you, and missing you.  xoxo.