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.

Selfish or Self-help?

As often happens, my last remaining vestige of my depression crutches, my therapist, made me feel a lot better about something that's been bugging me.  I was very upset that I was unable to "remember" what my body felt like (from the inside) in the area of my surgery, before the surgery. Probably because I feel the weight of the implants so keenly, I thought I ought to remember the lack of weight, or something - anything - about how I was before.  I know my skin had feeling, at the very least, but I can't remember it.  (As I said, I was really upset.)  I compared it to being unable to remember the sound of a departed loved one's voice, or touch.  She pointed out that I probably never thought about it much in the many years before the surgery, and she's right to a point.  I remember what nursing the boys felt like, and I remember other things, but, whether I'm unconsciously (sub-consciously?) protecting myself or not, I don't seem to remember anything else.  And, since I wasn't in the habit of taking pictures of myself topless, the fact that my brain also refuses to remember what I looked like, well, it's really, really frustrating sometimes.

So why has it taken almost a full year to worry about this now?  I think I was (am?) actually in some form of shock, taking care of things as they needed to be taken care of, but not fully realizing anything about my loss that could stop me from functioning altogether.  And I'll bet it's common, too.  After all, I know I'm not the first one to be in this situation, and I certainly (and unfortunately) am not the last.

I also was distressed that I seem to have turned more inward over this past year, and worried that this perceived "selfishness" had somehow been harmful.  I wonder, did it hurt my family and friends?  Did it cause my work to suffer?  As it turns out, what I term selfishness probably saved my sanity (if indeed I am still sane.)  I had to turn inward.  I had to focus on myself, whether it was by taking care of my own drains (even though many people offered to help) or by making sure I ate and drank what I liked, or by forcing myself to do what the doctor(s) said, even though I could have just stayed in my chair and been waited on.  I tried to take every opportunity to get better, at least physically.  I think I had no energy to work on my psychological recovery, so that got put on hold for a long time.

My work did suffer a bit, in my estimation, but only in that I felt myself less in control - of my paperwork, of my organizational tasks, of little things.  As for my family and friends, they just let me be and although I know it went directly against their urge to help, it was a very great gift. 

Now, two days away from the day I started trying to figure out how to heal not just my physical parts but my "whole," I worry that too much introspection will set me back.  On the other hand, I have to believe there is still work to be done there, and I hope I can tell the difference between self-care and self-pity along the way.

What is happy?

Alex is taking an online summer course on philosophy, and he is writing a paper.  For part of it he has to define happiness.  So he came down to ask us how we would define being happy.  I told him that I thought it was something about doing things you like most of the time, whether you're paid for it or not - or maybe it was about liking the things you do  most of the time, which is a bit of a difference.  And is contentment the same thing?  I think not.  For example, I am not currently "content" but I am mostly happy.

If this was the first time I had this kind of conversation in a week, I wouldn't have given it a second thought (and you wouldn't be reading about it, either.)  It's all good, as the kids say, at home.  But, I was getting not so much joy out of my work as usual (and that's odd because summer is a great time for one who likes to organize and buy school/office supplies!) and I couldn't define why I was sort of unhappy (as opposed to sad, or depressed, or cranky.)  I knew that with our rabbi out on sabbatical, the dynamics of our workplace would change a bit, but okay.  We'd already been through that last summer, and it didn't seem so terrible.  An email conversation with a friend and former co-worker (shout out to Colorado!) revealed that this summer is different for ME, not for the synagogue.  I probably didn't even notice much last summer, what with the life-altering surgery and all.

This summer, I am feeling all the discomfort that our "team" is experiencing as a result of its absent guiding force.  To ourselves, we say it is not as much fun around the place, but it's more than fun - it's more like the normal stress that's usually on everyone for day to day things, like pastoral items, interpersonal staff relations, and member care, feels tougher because we're missing a piece of what makes us work so well.  We're all separately strong, but I think we feel kind of brittle.  Of course, I can only speak for myself, but for sure I'm not the only one feeling the strain. But.............1 month down, 2 to go, and I've got to admit the quiet is kind of nice.

However, I'm not happy with not being content.  (How's that for a concept?)  Once I identified the problem for myself, I started working on the solution.  The answer is to press on and focus on all the cool stuff I get to do that is unique to the summertime work environment, which is, in addition to organizing/purchasing, covering for both rabbi and cantor, so I get to work with students practicing their Hebrew and their chanting (one of my favorite activities that I don't get to do much) and also to help students prepare what they will teach at their Bar or Bat Mitzvah.  And, I get to work more closely with our administrator than I do the rest of the year, when there's simply not enough time to talk about trying something new.  We conspire on how to entice prospective members and she's a great sounding board for some of my whackadoo ideas for the coming year. 

And tomorrow, we're going out to lunch for my birthday.  Gotta love a job that includes going out to lunch!

Zipper neck

I've had several "good looks" at the stitches since the bandage came off on Friday morning, and the whole effect is scarily similar to parts of Frankenstein's monster!  The line of stitches is about 4 times longer than the original "little pink itchy spot" ever was, but I was told (and it makes sense) that they need two parallel lines to make a nice (i.e. tiny) scar outcome and the surgery leaves more of an ellipse shaped wound.  At first glance, because the stitches are dark, it looks like there are a lot more of them than there actually are.  I've tried to take a couple of photos to show what they look like, but close-ups of that area make everything look pretty terrible (!) so you'll see me in person or use your imagination.................

They have to be washed twice a day, and always be covered with bacitracin or something similar.  I'm allowed to leave them uncovered (which eliminates the itch quite a bit) but since it looks a little scary to "others" I have a new stock of gigantic band aids.  Mind you, in my eyes the band aid draws more attention, again and again, while people wonder what's under there.  If they just saw the darn stitches, they'd know!  If the weather cooperates and does not become "stinkin' hot" again then I also have an assortment of scarves to accessorize and camouflage.  The stitches are scheduled to come out on June 23, but before that we have a prospective member BBQ and outdoor service/open house that hopefully will necessitate lots of tours and talking about (selling) the school.  I think band aid AND scarf for that :)

It's only sort of funny that now that I can go fairly low-cut and bra-less on occasion, that I have to cover up!  And on that side(s) of things, I am finding that there are many times going without a bra is actually uncomfortable.  I think there are still things healing, so the "pull" on the interior support work on the right actually stings if I twist the wrong way or pick up something heavy, or reach too high.  On the left, I guess I shouldn't be surprised that a muscle used to being in one place and doing one job for over 50 years would take a lot of time to get used to its new surroundings and new job.  Talk about teaching an old dog new tricks!


You would think that all of last year would teach me perspective, or more patience, or whatever, for the healing process of this, relatively minor, surgery.  But noooooooooo.  I chafe at the itchy stitches, (and necessary band aids,) I'm tired of covering up, and I'm just a little short-tempered.  (Here I know I am being ridiculous, since it's only been since last Thursday, but if I can't kvetch (complain) here, then where?)

Although my constant supporter Rod has been incredibly patient (less the zipper neck comment, which he contributed) it's a busy time with a couple of graduation parties, the annual staff dinner/end-of-year meeting, and in the middle of it all, Ari's finals, always a bit of a cliff-hanger considering what a smart kid he is.  So I have a feeling that what it comes down to is: we'd just like to survive sophomore year of high school.  It's just a matter of enjoying all the other stuff along the way because it's mostly all good stuff!

Right around 3 p.m...........

Is when the numbing medication wore off all the way.  Doctor called around 1:30 to check up on me; things were getting a little itchy, but he said the bandage could go first thing in the morning, then shower and bacitracin. (It's possible part of the itch is from the bandage.)

Round about 3, though, the real pain showed up, so I tried to stay in a lying down position for most of the afternoon.  (Seems when I stand up or sit up straight something pulls and it hurts more.)  I tried out 3 advil, which only worked a little, but I am determined not to suffer through the night.  So, out will come one of the heavy-duty painkillers I can break in half and get a good night's rest.  Then tomorrow will be better.  But I'm glad it's over.  In the morning we'll get a good look at the stitches!