Moving (Carefully) Forward

Remember the days when I couldn't wait to take a shower?  All of that changes when getting undressed turns out to be the biggest challenge of getting clean.  God bless Rod; on Thursday night he helped me do the peeling off of the ultra-firm tube and peeling on a clean one, and I hope never to have to ask him to do that again.

Talk about killing the magic.  (Ladies, I think you can picture it.  Gentlemen, please don't.  And bless you if you help your female loved ones with things that result in sights they'd rather you not ever, ever, see.)

So, I've worked hard to be able to undress and re-dress myself, bottom (haha, yes) to top.  Saturday morning was my first outing, to represent our Board at a Bar and Bat Mitzvah of two students I had been working with over the summer.  Little stiff, but the "please rise" and "please be seated" episodes were not nearly as bad as I had anticipated and the service was more than worth the work it took to get there.

And then, because my priorities were probably still a little valium-influenced, Rod picked me up at the synagogue and drove me to the house of our friend Chris, hair guy extraordinaire of our entire family for over 25 years and who himself is still recovering from a back surgery in early August.  Which means none of us had haircuts since August.  Rod was looking positively shaggy and Ari resembled one of the Chicago 7.  I was getting a little Peter Frampton.  I am grateful he could work his magic on the 3 of us; Andrew and Alex will have to wait until he feels better still.

Sunday was carefully planned to have no plans beyond rest.  A little light lifting to cheer on the home team in some post-storm yard cleanup, and a lot of sitting on the steps directing the work.  Some unfortunate health issues have surfaced among my staff, so I spent a good bit of yesterday "arranging" personnel.  Silly me, making plans.

Today is my first day driving and the "long" work day and I've so far stayed put until I have to actually get moving towards going to work.  The plan is to stay for most of the usual 5 1/2 hours of school, with the option to leave before I get too weary to drive myself home. But I've got my Advil!

Tomorrow is (conveniently) the "last" day of religious school for the week until Sunday, and Wednesday we go to see Ari and his choir sing at Radio City Music Hall, which entails a bit of a haul, but walking seems okay and sitting seems okay.  It's the getting from one position to another that's a little dicey.  Wednesday also is my first post-surgical appointment with the surgeon, so I'm a little apprehensive about whether I'll be praised for my adherence to the whole undergarment endeavor, or lectured on why I should go out and buy tighter ones. I expect by the time we go in and out of the city, visit the doctor, and return Ari's tux to the mall, I'll be, as they say, "knackered" for a bit.

Biggest kvetch (complaint) at the moment is that my back is really suffering from being slept on so I can't sleep more than a few hours at a time; I'm going to offer to the surgeon to wear the hated longline bras (which, absurdly, I still have) at night in exchange for being able to sleep on my side.  Wish me luck!

1 Goal Down

First off, a recap of surgery day:  I went into the operating room a little before 8 a.m., and Rod said the doctor came out to see him around 11:30.  Lots longer than we thought, but, as the doctor put it when Rod said he was getting a little worried, "we had a lot to get done."

It's kind of strange to get wheeled in your pre-op chair to the operating room, then you get out of the chair and you put yourself on the table.  They ask you to adjust your body so everything is where they need it to be :) and hook you up to all the monitors and stuff.  This time, one of the OR nurses had put a warm blanket over the table just before I got there, so it was nice and cozy and they immediately covered the rest of me with warm blankets. And the IV didn't burn, and everybody in the room introduced themselves to me, and it was all very jolly - if you don't count the fact that I'm quietly freaking out about potentially not waking up.  That, as I told anyone who would stand still long enough to ask, was goal #1.  My list of goals for the day (improved appearance, etc.) was narrowed down to one.  Wake up.

As a matter of fact, the first thing I remember after the surgery is in the hallway being wheeled back into recovery and saying to whoever was doing the steering (and I'm pretty sure I was crying) "Hey, I'm awake. Don't worry, these are tears of happiness.  Thank you!"  Then I asked what time it was (11:40, I think.)

Don't remember much after that for a while.  Rod came in to see me fairly quickly, and we didn't leave the hospital until about 2:45.  The doctor said I was very dehydrated and I had to stay until I finished another IV bag of fluids.  We had lovely nurses every step of the way.  The hospital is in the throes of installing a new computer system, and all the pre-admissions people, nurses, and technicians were dealing with us patients and the new system.  Everything took longer, but they apologized a lot, and in the end all was accurate (correct surgery, correct part(s) of body, correct date, etc.) so that's the important thing, right?

Took a look under the blankets and saw I had acquired a new gross velcro surgical bra and was securely ensconced in my "restrictive" high-waisted garment.  (Think girdle.)  So, of course with all those fluids, eventually I needed to go to the bathroom after I could get up without wobbling.  As Rod and the nurse guided me and the IV pole to the bathroom, and Rod helped me start to peel down my new 24/7 undergarment friend, it was excruciating - O.M.G.  He said I looked like someone had beaten me up with a baseball bat from the upper waist on downward to the small incision where I guess the liposuction was done from.  The bruising was quite incredible; for the first time, I think the doctor led me astray when he said that compared to the pain from the back surgery, this would be "nothing."

Yeah, well, maybe in a few days it will be nothing.  Now I'm just grateful the other garment thingies I bought (next day delivery, Amazon!) have hooks that let you go to the bathroom without rolling them down!  I'm only allowed to sleep on my back because the new implants needs time to get settled and we don't want to upset the fat grafts.  It's actually kind of hard to sleep flat on your back for too many hours in a row.  So a couple of times a night I get up, check out my pain-control pharmaceutical options, take a lap around the living room, drink some fluids, and play KenKen on my iPad until I get sleepy again.  As of tomorrow, I can start Advil again instead of Tylenol. Amazing what kind of thing becomes great news.

Went for a follow up with the nurse on Thursday (she took off all the bandages, gave the okay for a shower, and trashed the velcro bra) and was told that the 2 week timing I thought I was told on the 24/7 girdle thing is actually closer to 4-6 weeks with potential hours off, eventually, for "good behavior."  As it turns out, I purchased something called Ultra Firm instead of regular ole' firm, so based on past experience with this doctor, even though it is pretty darned uncomfortable, I think I'll stick with it for a while and hope to be rewarded with a hearty "looking good!" from the doctor when we go for the next follow up on Wednesday.  I also have to wear a bra 24/7 for an undetermined amount of time, but it doesn't have to be the long-lined variety.  Yay! 

Amazing what you can be grateful for.  And now Thanksgiving's coming.  Next goal: order turkey.

Thinking With Your Head versus Your Gut

So, I've been tooling along all focused on logistics, like what time to wake Ari tomorrow so that he's alert, dressed, and fed for his school pick up (5:45!)  Or what strategy to use with my own clothing so that it's easy to get out of and back into after surgery (button down pj shirt that doesn't look like one - Vera Wang on sale at Kohl's.)  Or, writing a list to take of all my medications since I know that's part of the pre-op interview.  Or, choosing a bag to hold all my "stuff" that Rod wouldn't be embarrassed to haul around the hospital while he's waiting (black & brown small backpack instead of the usual pink, yellow, green and blue pastel striped bag that holds a lot from a Bath & Body Works promotion.)  You get the picture.

Despite all this "thinking" about tomorrow, I guess I wasn't really thinking about tomorrow, not with my gut anyway.  The nurse called this morning to ask about the EKG and blood test results (as in, where are they?) and I told her the hospital had done them so they had better be at the hospital.  Right hand, check in with left hand.  As she said goodbye she said "Don't worry, you'll be really happy with this."

I don't know why, but now, I'm scared.  Stomach turning, limb shaking, shallow breathing scared.  Maybe work this afternoon will help.  

And yes, I've called the hospital.  The test results are all okay and I've been given "clearance" for surgery  Or takeoff, I guess.  Never liked takeoff.  Much happier with landing.

Martha Stewart! (or, The Lion, the Witch, & the Wardrobe)

First of all, Thank you, thank you, thank you to Nancy Levene for inviting me to go with you to be at Martha Stewart's Breast Cancer Awareness show!  Now, on to the remembering............

Our front row, on the floor seats.  The "potting shed" set is behind us.

I met Nancy at the train station in Ramsey a bit before 7 a.m., and we got on the train to Secaucus.  So far, so good.  Dressed in "nice" heeled boots, a tasteful but fashionable skirt, and solid pink top (no sleeveless) as per the very, very specific emailed instructions from the Martha show rep.  (And you had to reply back with exactly what you were wearing on top.  For the record, pink cashmere twin set, as you can see from the photo.) This is part 1 of the WARDROBE reference.  Feeling very special. Change trains at Secaucus, easy (thanks to Nancy, again, for knowing what we're supposed to do) and get into the city with plenty of time to be at the studio by 8:30 for the 10 a.m. show.  It starts to drizzle.  Excuse me, there was NO RAIN in the forecast.  We stand in line for not long, and then are ushered into a waiting area, where we are identified as Survivors on our tickets with a big "S."  (We are a special sub-group of the audience.)

We fill out all kinds of waivers and a paper that has us list any questions we might have for the special guests, and Nancy gets picked to ask a question on-camera!  (I didn't write any questions because I didn't want to get picked. Slightly egotistical of me to think I'd get picked, now that I think about it, and really stupid, now that I've been there.)  We wait while Joey Kola, stand-up comedian and Martha's audience "fluffer" comes and tells us the signals for the various audience reaction they'd like to hear.  He's very loud (the LION) We're "trained" to "mmmmm"  when he rubs his tummy, and to "ohhhh" when he does something else; wild gesticulating over his head is for loud clapping, hooting, and whistling.  I can't remember the rest but it was pretty funny. He really does shout a lot and the end result is he's got everyone's attention.  Then during the taping he makes sure by handing out little freebies to you if you're REALLY enthusiastic. (no freebie for me)  When you think about it, Martha is probably so successful because she's so controlling.

After the show - Martha takes questions from the other 3 people who didn't get to ask the experts.  They had to think fast on their feet to change their questions, since the experts were no longer there :)  Joey K. is in the striped shirt.

We sat in a "special" section for survivors down on the floor, not up in the tiered regular audience section.  Good news, bad news.  We were probably only 20 feet from the sets, which was cool, and we got to see all the cameramen, cue card people, and miscellaneous folk who run around behind the scenes.  On the other hand, the camera that pans the audience to show on TV before and after breaks does NOT scan that section, and when the cooking segment was filmed, that part of the set was so surrounded by cameramen and sound people that you couldn't see the cooking unless you watched the giant monitors up near the ceiling.  (So, if you ever watch the show and you see the audience looking up, that's why.)  They assigned about 7 people to ask questions, and Nancy was #3.  (They only got to 4 people, in the end.)  Nancy got on camera, of course, as did the couple of people to her left.  I was to her RIGHT.  Cosmic justice for me thinking I shouldn't write a question because I might get picked.........................

View from the front row - very exciting!

Because of the topic for the hour it was not terribly exciting - an impression I confirmed when I came home and watched the TiVo'd version.  Nutrition expert, other doctor who showed pictures of mammograms, stem cell experts, healthy food recipe.  Done.  It really is only an hour, live and we were back out on the street by about 11:15 (rain over, thank goodness.)  But before we left our small special group had a photo taken with Martha.  Joey instructed us to get up "in formation" in the same order we were sitting (so Nancy and I were in front.)  As I get up there, I find I'm RIGHT NEXT TO MARTHA!  She glances over at me (or maybe through me) and says "tall in back, short in front."  No smiley hello, glad you could be here, nothin' but frosty. (White WITCH,  anyone?)  Of course, since I had chosen the boots with heels (which by now were rubbing a bit on the toes) I was taller than the woman behind me, and so ended up in the back row.  Haven't seen the photo yet but in that sea of pink, I'm glad my hair is longer so I can look for it.

BUT WAIT, what about the giveaway, you ask?  There's always something great; last time, Nancy got a pink Kitchenaid mixer.  I had lowered my expectations to a cookbook.  But when Martha shows off her cool Ralph Lauren "Pink Pony" sweatshirt cardigan, I get excited.  Nope.  We got tee shirts (part 2, WARDROBE.)  As Nancy and I had lunch afterward to make the most of our Manhattan experience, we check the tags (left on, of course) and find the retail price of these tee shirts is $98. Guess I won't be going out to look for the cardigan.

It was fascinating to watch, and I'd do it again in a heartbeat.  And when I do I'll go hoarse from yelling, and sore from clapping, and I'll ask a question.  I still admire the woman; I'm hopeless.

Preparing for Surgery: Take 5

Staged Reconstruction - that's what the doctor calls this series of "procedures."  (Hey, anything I have to have anesthesia for, and sign 20 pages of waivers prior to, I consider slightly more than a procedure, but there it is.)

Tuesday, November 8, is my next, and I thought, last surgery.  But when I went to the doctor last week to talk about what he would be doing (more on that later) he said something about doing this in "stages."  Isn't 5 enough?  Trust the surgeon, Luke/Rebecca.........say it with me, now.  I trust the surgeon.  I trust the surgeon. I trust the surgeon.  Rod says to trust the surgeon.  It's still a little hard to not have control here.

So, in September we had a "little look" at everything and I went in fully expecting that what I had was pretty much all that was going to be.  Considering what he had to work with post-mastectomy (very little) and based on the compliments from my other doctors and anyone else who wanted to have a look, I felt both lucky and still a bit dissatisfied.  But, I figured I got the "picky gene" from my mom and I had myself ready; if the doctor said this was as good as it got, it was okay.  As always, it's the uncertainty that gets you.

But, he didn't say that.  He said, now that everything had "settled" (I know, it sounds funny now, kind of like a house settling, but it's fairly accurate) he could see what else needed to be done. So, fat grafting (taking fat from elsewhere - and more about THAT later) and probably switching out the implants for different ones, and some excess skin removal where nobody but me (and he) notices.  2 hours or less, outpatient, I have no idea what kind of anesthesia, and a week from tomorrow beginning at 7:45 a.m.  I don't have to be there until a respectable 6:30 a.m. and I don't have to spend the afternoon/night before (in which I have to work my longest day) graffiti-d up with Sharpie marker because he's not around until the morning of the surgery, so he'll do it then.  You know it's a slow news day when I'm excited that I get to take a full shower at 5 a.m. the day of a surgery!

I'll have to wear "compression garments" (read: Spanx-like) for 2 weeks, 24/7 because he gets the fat from the abdomen, and "we want to avoid fluid buildup."  Oh yes, we do! (I guess it's better than the long-line bras.  I hope.  I pray.)

He has to get the abdominal fat via liposuction, and for a special low, low breast cancer patient price (not covered by insurance,) he'll just get the rest while he's at it. I've known about this for a couple of months, and so have not bought ANY new pants.  Here's where I really ought to tone down my expectations, but I just can't help it.  And to those, including me, who feel liposuction is just a risk no one need take, I say - he's gonna do it anyway, so risk already being taken.  In for a penny, in for a pound.  Or maybe 2 or 3. Maybe it ought to be "out for thousands for dollars, out with some pounds?"  (Wonder if the implants weigh more than the fat he'll remove?)  Hmmmm.

Fat grafting is how you get a little more "padding" where there used to be mammary tissue higher up than the actual "mounds." (I've learned some new terms.)  Fat needs to establish itself and "hook up" with the blood supply, so you can't graft a lot of it at once or it dies.  Hence, the potential need for future grafting, depending on how this batch thrives and if more is needed.  The discussion of tattoos is, temporarily, off the table.  I'm glad I don't have to argue that any more, this time around.  We'll get back to it later.


I've already called the anesthesia department at the hospital and gotten them to put a note in my folder re: IV line in arm rather than hand.  Rod (because his office was closed due to a power outage for the first time in about 20 years) waited patiently through a 3 1/2 hour run to the hospital for pre-admission bloodwork and EKG, and to the surgeon's office to drop off the "if I don't make it, it's not your fault" signed paperwork - and to get my $200 worth of compression garments approved. (For the record, I was told I should just buy two: one to wear and one to wash.  Really? This is my underwear for two weeks, day and night, and TWO?  Silly, silly people.)

Tomorrow (and in a rare display of sympathetic behavior on her part, I have to thank Dr. Eskow's receptionist, Grace for giving me an appointment in less than 24 hours) I go get a physical that I didn't know I needed (and I've never needed for previous surgeries) until my paperwork arrived in the mail on Saturday.  ("Please have the results of this forwarded to our office no later than a week before your surgery.")  You do the math. It's just barely getting done.

But it's all getting done, and we move ahead, bit by bit.

Been Gone, Too Long

Eek!  I realize it's been since July 4 since I posted. The summer flew by in a whirl of preparation for the school year, combined with some teaching of the rabbi's and cantor's students and my adult students who continue to want to learn!

Tonight's post is pretty specific.  Tonight I spoke at our Breast Cancer Awareness Shabbat and below is what I said.  (The last "prayer" section a bunch of us, survivors, family, and friends said together from the bimah.)  I thought I was going to be really nervous, but it turns out that it's easier to speak your own words than chant Torah or read prayers!

Shabbat Shalom

I know that breast cancer is not only a women’s issue; as a matter of fact, my sons’ school principal Bill Bruterri was diagnosed and treated many years ago.  However, tonight I am speaking on behalf of myself and all of the women I know, and the women you know, and the millions we don’t know, who are affected by this modern plague.  

 If you watch a lot of reality television, the word “survivor” might bring to mind tanned, muscular men and women wearing  shmatas and not much else on some godforsaken island fighting over who gets to stay there.  But those folks don’t deserve the title.  That word, survivor, is better saved for all of the women who are or were in treatment for breast cancer.   It even applies to those who had a “close call” and are now forever on the alert - and are, whether they like it or not, a part of this club that none of us would choose to be a member of. We know more than we’d ever thought, and yet never enough, about testing, and surgery, and treatment options.  We know which of our friends faint at the sight of blood but make a mean chicken soup, and which of our family members will take the most accurate notes at the doctor’s office.  On any given day, one of us is carting around films and test results in giant overstuffed folders. We are prepared, we, the “Sisterhood of the Traveling Mammograms.”

  When I was diagnosed in the spring of 2010, I asked my friend Nancy Levene, who you heard speak so eloquently on Erev Rosh HaShanah, “When do you start counting the days for the five years? (meaning, so that you consider yourself a survivor?)”;  She answered, “the day you are diagnosed.”;  She’s right, you know.  You never hear about “breast cancer sufferers” or “the breast cancer afflicted” or even “breast cancer patient” (unless you are at the hospital or a doctor’s office.)  You only hear “breast cancer survivor.”

 We have now reached day 21 of Breast Cancer Awareness month, and for these 3 weeks every news and talk show has hosted experts with advice, facts, and figures on fighting and/or avoiding this disease.  Those numbers aren’t important to us.  Like it or not, the number that matters to us is ONE.  I am the one with breast cancer, she is the one with breast cancer, her friend is the one with breast cancer, her mother is the one with breast cancer.  We are the one we worry about. When we hear our tradition say: “If I am not for myself, who will be for me?” breast cancer survivors know that means it is okay to be selfish, to be taken care of, even though, or maybe especially because, we are used to being the caregivers ourselves.  And it means it’s okay to struggle with being unclear about doing or not doing things. It gives us the permission to keep moving forward, to keep asking questions that will help us understand - to try to hold onto some semblance of control over what happens to us.

 However, our tradition also teaches: “If I am only for myself, who am I?” After our silent prayer tonight, and then at the end of the service, we will sing a song by Dan Nichols, called “Chazak.” The chorus in particular felt appropriate to me because it speaks to us as individuals, but it reminds us that we must be not only for ourselves.  We must, as the chorus says, “be strong – let us strengthen one another; be strong, let us celebrate our lives; be strong, let us strengthen one another; chazak, chazak, v’nit’chazeik.”;  In order to continue to be there for each other in a more formalized way, a group of us would like to start a breast cancer support community here at Beth Haverim Shir Shalom.  We know that we want to meet monthly, and we’d love to start in November.  Please let me know if you would like to be a part of that group.  We will not be giving out medical advice, but we do plan to share our stories and compare notes, talking together and gaining strength from each other’s experiences.

As is customary in this wonderful community of caring, we offer prayers of well-being for each other, and receive blessings in return.  I would like to invite anyone here tonight whose life has been touched by breast cancer, whether you are a survivor, a caretaker, a family member, or a friend, to join us here on the bimah.

 Tonight we pledge our support to you, everyone who survives with breast cancer; tonight we thank you the caregivers – the family, the friends, and the co-workers who offer meals and childcare and driving and flowers and gifts and lovely notes and funny cards and telephone calls.

 

Oh God, as we offer this prayer as individuals but all together, may we be strengthened by the voices of those around us.

We pray for high numbers where they should be high, and low numbers when they should be low.

We pray for peace for the families and friends of those who have not survived; we pray that their memories live as a blessing.

We pray for wisdom, skill, and compassion in our medical professionals.

We give thanks for supportive spouses, helpful children, wise parents, and understanding friends.

We pray for patience enough not to become discouraged, hope enough to overcome all fears for the future, and faith enough to know Your Presence.

And, as we move forward into the rest of our lives, we pray that pink will someday return to being merely a color in this amazing world we are lucky to be a part of.

Chazak, Chazak, v’nit’cha-zeik.  Be strong, be strong, and let us be strengthened.

Amen.

Pink Oneg!

Pink Pumpkins by Nancy Levene :)

Cape Fear

As we start to make plans for our annual vacation on Cape Cod, I have, within the past couple of weeks, been struck with a scary, almost paralyzing thought:  what if this trip is just as awful as last year's "vacation?"

From a common sense point of view, the situation is not the same.  No infection to be monitored constantly in case of an emergency trip back to the hospital in New Jersey.  No stitches.  None.  Even my basal cell removal site has no stitches and has ALMOST stopped itching.  No healing drain holes, no complicated hour-long shower sessions (with drive time, almost two hours) at a remote (my dad's house) location. No presenting, as they say in the medical biz, reason for a revisit of last year's experience.

I would very much like to go back to vacation two years ago, in which we miniature golf course-hopped at night, arriving at the last to finish our games at closing time.  We ate whatever we wanted, mostly.  I spent hours sitting on a giant float tethered to the dock, doing Hebrew grammar exercises - it was heavenly. I read and sat and we went to the movies with my dad to see "Up" - we were the ONLY people in the theater and it was great!  (Middle of the afternoon, mall cinema, gorgeous weather.  Only crazy people and locals go to the movies under those conditions - and we are some of both.)

My depression last summer started just before we left, and ended maybe a week after we came back.  So, the common denominator between these two vacations is the time to sit and think, and there's a danger that too much thinking will lead to sadness, and then spiral downward from there.  Last year's trip was fully a month after my surgery, so the time passing in and of itself cannot be proof to me that it will not happen again.  It started before we actually went away, so that tells me it wasn't just the inactivity (although when I returned and started working hard again, it seemed to dissipate - coincidence?)

I have tried to do everything I can to prepare and organize so that there is no excuse to be sad and worried and anxious to get home as opposed to enjoying myself.  We have, in addition to Jackie checking in with Mario and Luigi two of the nights we're away, one of Ari's friends keeping an eye on the temperature in the room during the day and taking in the mail, and we've hired professional pet sitters who happen to also be members of our synagogue and live here in Oakland, to come on all the other nights and see to the chinchillas' needs.

I have stopped the paper; we have laid out everything we can think of on the dining room table and the list gets checked off every time something new goes to the table.  Alex and Ari have been reminded about a hundred times what they'll need to help with.  I have a stack of 9 "reading" books to go, as well as books loaded onto my iPad and there's another smaller (but not by much) stack of reference books for studying.

I am determined to continue trying to eat more healthily even while we're away.  So maybe only one or two lobsters, one order of fried clams, and a limit of two visits to Friendly's for sundaes!  Lucky for me, the penny candy store's greatest lure is salt water taffy, with maybe one tiny piece of penuche (brown sugar fudge) for old time's sake.

Instead of being afraid of this vacation being as terrible as I now know it's capable of being, I want to just cast off the old crap from last year and enjoy myself, but there are just still those things that chip away in your mind and I can't entirely banish the fear.   I've got one more meeting with my therapist before I go, and I've always come out of there with more tools for handling rough situations (real or imagined, past or future.)

I hope to be able to come back from the Cape understanding that last year was (an exceptionally awful) exception and that this year we took up right where we left off two summers ago - sitting by the lake, time with my dad and brothers and their families, watching our boys get together with their cousins whom they rarely see, and generally doing the "nothing" that is really something special to us.