Better is not the same as Good

Thankfully, things did not get worse from 11/16; however, it would be a stretch to say that they are just ducky now.  I worked assiduously at wearing my garments 24/7, and when my lovely friend Evelyn accompanied me to the doctor on Monday, I had put enough Emla cream on, and early enough ahead of time, that I was able to withstand the fluid draw much better.  Yes, more fluid, but I was told not so dark red.  I took their word for it. Monday is such a sucky day to have this done, but at least this time they had called me in early (11:30) so Evelyn dropped me off back home in time to rest for a bit before work. And, I was now allowed to NOT wear binding undergarments to sleep in, but still need supportive tops for at night.   For some reason, my entire abdomen was really sore after that one for the entire day - I think I made it through work, but just barely. 

He asked to see me the following Monday at 1.  Ugh.  Monday again.  But oh well.

The very next day, I get a call from his office saying he'd like to see me tomorrow (Wednesday) before the long weekend.  I was in the middle of conducting a double Bar Mitzvah rehearsal at the time, and did not have the composure to excuse myself to say, essentially, "What the hell?"  So, I fretted about that for the rest of Tuesday, having misplaced Tania the nurse's cell #.  Did they test the fluid and find an infection (no, duh, otherwise they would have told me to refill the antibiotics ASAP).  Did he suddenly remember that something looked wrong?  A tired imagination is a terrible thing - and should be wasted.  Everyone (Rod, Evelyn, and any teacher who came into my office that afternoon) said it was probably just because the office would be closed for the Thanksgiving break and he wanted to be sure to start me off with as little fluid as possible.

So, the day before Thanksgiving off we went - Rod reassuring me that this was a good thing (!) and me with my trusty Emla cream and Saran Wrap.  And out came the needle and there went more fluid.  But less than last time.  When Rod pointed out (quietly, he thought) to me that it had only been 2 days since my last visit and maybe that was why, nurse Donna said "I heard that!  It's just less and that's good!"  I think maybe she used to be a cheerleader.

Obviously I don't have a medical degree like my doctor does, but it feels like all of us are now grasping at straws. At this appointment I was asked to buy a binding strap-type thing that stays on with velcro and the tighter you pull it the tighter it binds.  That was to go on top of the waist-high girdle thingy. And, I was told to "stop moving so much."  Huh.  Thanksgiving the next day and we weren't having a houseful, but we were hosting.  After a purchase at the surgical supply shop and Rod doing "surgery" on the new purchase to make it fit, I was now both girdled and bound.

And I tried not to move.  Really I did; Rod can attest to that.  Thanksgiving required some, and yesterday we went to friend-as-family Jesse Shearer's Eagle Scout ceremony.  Today (Monday) is now the next appointment (in a couple of hours,) and I don't know what the heck to expect.  I'm tired of hesitantly (and gently) poking that area of my abdomen seeing if it springs back, indicating - you guessed it - fluid.

But there's much less, I think.  In the "no good deed goes unpunished" category, I'm torn between telling him the truth - that I've faithfully worn two layers of binders pretty much all the time since last Wednesday (including DURING Thanksgiving dinner,) and being doomed to repeat this for another week, or telling him I've only worn it about 1/2 time per day because it's all I can handle, the "all I can handle" part also being true.  I wear it all the time, but my ribs ache, it's hard to sit and stand up straight, and nobody can really know if that's why there's less fluid, or if it's just receding/absorbing on its own.

I haven't had more than 5 hours of sleep in 3 weeks, and I'm starting to wonder if this is ever going to be worth it; indeed, I'm starting to forget what worth it actually is.  I know now that I overdid it just after the surgery, but I was undereducated and can't go back there in any case.  It's just a matter of getting this part done and over with.

I've read some other women's stories while cruising the 'net and for many (many more than you would think) the reconstruction process takes not months, but years.  For myself, I'd like to get to the point where I'm not in pain and/or requiring a surgeon visit weekly.

Humorous (I thought) interaction from one recent appointment: 

Me:  How will I know if the fat grafts have stayed alive or are dying off and you have to do it again?
Him:  You won't.
Me:  So you're not going to tell me what to look for, but you know what to look for?
Him:  Yup.

Remember the mantra - "trust the doctor....................."
 

November 16 Turns on Me

As you may or may not recall from blog entry from a few days ago, here's how I thought surgeon follow-up might go:  "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."

Hah.  From where I stood (completely exposed, most of the time, with a cast and crew of Rod, the doctor, his nurse Donna, and someone who I suspect is a trainee of some kind but whose demeanor and dress remind me of the era of Rosie the Riveter, not the kind and compassionate staff who have helped me in the past.

I have not yet realized that I have "overdone" it for the day (fresh off of Ari's Radio City performance, described in previous "happier" entry.) We start off okay; the doctor is very pleased with the upper level work, and says I'm healing ahead of schedule. 

Lulled into a feeling of ease, I show him the rest of the territory, and he immediately sees the fluid buildup in my lower abdomen (which I suspected was there but thought would absorb by itself over time.)  Here's where one of my wretched imaginary situations happens - he pulls out a needle and a tube and a bag or something and tells me not to look, and, well, he got a lot of fluid and it HURT.  But I've been through hurt and was glad to get rid of the fluid.

He takes a look at the ultra firm garment that I'm so proud of and notices we've slashed the top so it won't dig into my ribs.  Well, this will not do at all.  What if it rolls down?  So I change into another kind I've brought with me which seems to appease him..  Then, I start with my little notebook page of questions, which he is entirely used to, and I think, mildly amused by at this point.

Here is where I made my fatal error - I was told by the nurse I needed to sleep on my back, and it was getting a little tough, so I thought if I hauled out the ole' longline bras for more support at night I could wear them just to shore things up and allow me to sleep on my side.  He took one look at the LLB, his eyes lit up, and he decided  it would be the PERFECT thing to keep on over the waist high girdle, ALL THE TIME, to keep the waistband from rolling.

In an effort to explain that I was trying to make good progress, I told him I was getting along with pain control with just 2 Advil in the morning and then 3 at night - no other pain relief - so proud of myself for not using the Oxycodone.  And he said, basically, that's why I probably had this extra fluid problem, from the Advil.  I felt like I had been punched, not physically, but intellectually.  I have tried so hard to be informed about what could go wrong, how to work at avoiding it, and everything else; I was just furious and disappointed and beyond consoling.

 Then he tells me he wants to see me again on Monday (my longest work day) and, as it turns out, at 3 p.m., which is right around when I go to work.  So the realization that I would need to get coverage for myself yet again, pilot myself the half hour to 40 minute drive to (and then from) Englewood for an undetermined amount of time on Monday afternoon, potentially have more fluid drawn (painful but necessary, I know), and possibly (once again) not have anything positive said about my recovery, added to the lack of rest of the day so far - I just couldn't help it.

When poor Tania (the new nurse/receptionist who is lovely and even gave me her cell #) asked if I would sign a release to have photos of my work posted on the practice's website, I had enough control not to rip it up and throw it at her.  I simply asked her to put it back in my file and maybe I'd feel better about signing it on Monday. (I know I'll sign it eventually, since I've already let him "show me" at a big convention in Milwaukee:)  But I wasn't doing one more thing for that office yesterday beyond trying not to cry in front of the other waiting room occupants.  By the time Ari & Rod got me down in the elevator and Rod went to get the car from the torrential downpour to where we were waiting, I was sobbing pretty hysterically on poor Ari's shoulder.

Got home, crawled into bed completely dressed, and slept for almost 2 hours.  Rod very kindly brought me a chocolate milkshake for dinner, which I shared with Ari.  Figured things were going to be okay.

Right.  2 a.m. wake up, do the regular routine - get a drink, potty run, back in bed.  Then the waterworks, all over again.  Half an hour in I realize it's not stopping so I go sit in the family room, where Rod finds me (around 4, I think).  Half a box of tissues later, I still haven't figured out what's exactly wrong, but I'm cried out enough to go back to bed, take a couple of nerve-soothing (really low dose) Ativans, and finally fall back asleep. 

I don't know if I'm angry at the doctor's office for not giving me ANY post-op instructions on the liposuction part of my procedure, so I felt completely under-educated and unprepared for what happened, or if I'm angry at myself for not pushing harder to get the information, or for overdoing it so much in the past week as to maybe cause this sort of "breakdown", which is the only thing I can describe it as.  I know from past experience that you really can't dig yourself out of a funk by concentrating on it, so today, I'm going to concentrate on doing some fun stuff (Hebrew grammar exercises & Food Network programming), some work stuff (remotely from home) and as much rest and fluids as I can legitimately handle.

Tonight is the synagogue's Eternal Lights dinner, and it's a great evening - not stuffy or anything but a lot of laughs with really nice people and good food.  I was really looking forward to it, but now I'm not so sure.Gosh, I hate this feeling.............................

  Maybe I'm just going to have to go and get it to work its own magic once I get there.  A little makeup, a little jewelry, perhaps just one little Cosmopolitan?

Happy Times on November 16

Wednesday, November 16 - Ari's big day on the Radio City Music Hall stage.  We all got up pretty early, Rod did the most with getting Ari into his tux and I just managed to get myself up, washed, and dressed (a job unto itself, still) for uncertain weather and walking conditions in the city.  Everything went off as planned; Ari made the 6:45 call time at school, Rod & I got his friend Ryan off to school at closer to the regular time, we got into the city by 9 a.m., and found a place to grab a bite.  Then we smiled and asked nicely of every RCMH employee would could find outside the building, to ask where the "special entrance" was for the parents of the high school choir. 

Up close and personal (ok, not close enough to get spit on) with the "stars" of the Living Nativity.  

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The choir waits on a ramp right by our seats, so of course we're all taking photos, hugging and kissing (and generally embarrassing) them before they take the "big stage."

Luck stayed around as we looked down the sidewalk and heard our children singing - there was the door!  We went in with them, avoiding the security guy who took Rod's camera last year, and were more than ready with all the other parents when the kids took the stage.  A bunch of us rushed down to the front for our children's five minutes of fame.  We clapped, we hooted, we hollered.  They were wonderful.

Red Bow Tie, front & center!

Then they came off the stage back to the ramp for more hugging and after that we all settled into our assigned seats to watch the Christmas Spectacular, which, no matter what your own personal faith beliefs are, is pretty spectacular.  And mostly secular until you get to the living nativity scene near the end (live camels, live sheep, a very, very full stage.) 

After the show we met up with Ari (by now it was raining) and took off for the parking garage.  Job 1 was getting out of the city (follow-up with surgeon at 2:30 p.m.).  With Rod's expert navigation of the highways and byways, we were in Englewood with an hour before the appointment, and treated ourselves to IHOP.  We were all still excited about the show and lunch was very jolly. 

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.

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!

Post-op post

Without a hitch. That's how my foray into the world of specialized microsurgery went. We got there at 7:05, they took me in at 7:10, got started right away, and the doctor was extremely nice about the shot. He also checked continuously to be sure I wasn't in pain. Actually one of the most relaxing things I've done in a while! I had the option to stay in the treatment room or join Rod in the waiting area while they checked the newest samplings. We were packed and prepared to be there all day and, of course, I was skin cancer-free and stitched up by 8:15.

Stitches to be removed in two weeks and until then (after the first 24 hours of not touching my bandage)simple care: wash with soap, cover with bacitracin and use a bandage only if I want to.

So simple, so painless (mostly). Piece 'o cake. I'll let you know what happens after the long-acting deadening shot wears off. But in the meantime the two teeny ativans I took to ward off anxiety are making me sleepy. Nap time:)

Irony

Ever since I met Rod (over 30 years ago) he has had more than a few spots of basal cell carcinoma, that least nasty form of skin cancer, diagnosed (and removed)  due to many bad childhood sunburns on very fair skin.  Now, roughly at the same time I had my little (first-time) biopsy, he had two (count 'em, two) biopsies on suspicious spots.

So what happens?  For the first time EVER, his spots are nothing.  Mine (just above my breastbone, right where a necklace would hang) is "suspicious for basal cell carcinoma" or, as the dermatologist said "we don't even really consider that cancer."  But, based on my current medical situation and the radiation I had in that area some years ago, she recommended Mohs surgery.  Further explanation of Mohs can be found here  http://www.skincancer.org/mohs-micrographic-surgery.html?gclid=CILJ8oKfpqkCFURd5Qod-VnIug 
but suffice it to say, it's a method that ensures complete removal with the most desirable cosmetic results. 

So tomorrow I'm having that done beginning at 7:10 in the morning (yawn) but hopefully to(a) be the first patient in so no backup yet and (b)get out of there sooner in the day.

When the nurse called me about two weeks ago to go over choosing the date and time, I asked all the usual (for me) questions:

Me: So, you need bloodwork and an EKG?
She: Um, no.
Me:  Should I stop taking any of my medications now because it's only two weeks away?
She:  No, take everything you usually do.
Me:  No eating after midnight, or earlier because my appointment's so early?
She: We want you to eat, and drink.
Me:  But if I drink, what will happen if I need to go to the bathroom during the surgery?
She:  You get up and go.
Me: How early do you need me there for preparation - 5:30ish?
She: Just be on time.

So, you can see, I am now used to a whole 'nother world of surgery that this is clearly NOT.  When I got off the phone after that call, I thought "she probably thinks I'm nuts."   But when I read the presurgery directions they sent, they were heavy on the "make sure you eat well" and "bring snacks" - so funny! 

Since there is at least one needle involved, I'll be fully prepared with my lidocaine cream slathered liberally on the area an hour ahead of time (I'm such a wimp.) The paperwork does indicate that they try to make it a long-acting shot so that the area stays numb for a really long time.  Apparently they cut some off, stick a temporary bandage on you and send you out to a waiting room while they freeze and examine the tissue looking for clean margins, side to side as well as depth.  So there's a lot of back and forth and in the worst case, I could be there all day.  Hence, their main concern for prep is that you have comfortable clothes, enough food so you don't faint, and plenty to keep you busy while you wait.

This is the most "opposite" set of pre-surgery directions I have ever gotten - bring food, bring possessions!  Nice change from the "we want to make you the most uncomfortable you've ever been before we maybe don't kill you under anesthesia so you can't do anything you usually do for at least two weeks and don't bring anything with you that makes you feel less anxious" directions of my four previous surgeries :)

The biopsy for the suspicious patch took a lot of care, since it was an open wound; tomorrow's surgery will leave me with stitches, which I have grown to appreciate.  They aren't as pretty, but at least (after 24 - 48 hours) you can shower them and there will be a much smaller scar.

All this on what is predicted to be the hottest day of the year so far.  I won't be out sunning, in any case!

Annnnnnnnd...........there went May

To recap:  Great Adventure on May 20 with the Indian Hills High School Chamber choir was a long rainy day but a lot of fun and they sang beautifully.  We must have walked about 10 miles (not counting running for dry shelter at various points) and by the time Rod picked us up, we were wet and tired and slept most of the way back to Oakland...............just in time to shower and change for Ari's confirmation service.  In addition to helping to lead the service, he had two "speeches" - one a teaching piece about the omer and why we count it (I can send you his teaching if you'd like to know what the heck I'm talking about) and one personal piece about why a Jewish education past Bar Mitzvah is valuable (also available.)  He was terrific - so comfortable "preaching" - and so were his fellow confirmands, some of whom he has been friends with since preschool.

Two days later, again in intermittent rain (feels like we here in northern NJ were just plain wet for over a week) we began the ending-of-religious-school process with the last Sunday classes, followed by our 40/10 celebratory BBQ, which was really nice.  Monday brought two more last sessions of school, and Tuesday afternoon, the LAST last session of the official religious school year! But, I had to leave early to get home and get Ari to the high school, freshly groomed once again, for the spring concert. Andrew and Alex joined us to hear the wonderful choir pieces, highlighted, of course, by Ari's solo and also his part in a trio in the Sweeney Todd medley (videos available by request!)

Lest we not forget, the 24th was also Rod's birthday, which we ended up celebrating "officially" that Thursday at the delicious Saddle River Inn with the boys and Maggie & Tom McVeigh (who we cannot thank enough for everything.)  And then, boom, it was Memorial Day weekend and we were off to Baltimore for Digital Overload, a video gaming convention/LAN party where all three boys were registered to play.  In general it was a very nice trip, highlighted by brunch with Rod's cousins Joan and Ann and Ann's husband Rick at an outdoor restaurant by the harbor.

The view from our table!

The lowlight, if you could call it that, was our first night at the hotel, most of which was spent trying to re-inflate my side of the sleep number bed - didn't realize it was broken until about 5:30 a.m., and by then I had a lovely stiff neck :( but as I was trying to wake up in the shower I slipped and fell OUT of the tub, fer cryin' out loud!  It actually sounds worse than it was; two layers of shower curtain and Rod ensured that no serious damage was done.  (Of course 24 - 48 hours later, all the muscles that tried to stop me from falling were feeling the strain!)  But we saw a lot of Baltimore and did quite a lot of walking in the process, and got back to NJ early Sunday evening.  Of course, I couldn't miss my first "religious school is over" dim sum, so first thing (sort of) Monday morning, we were off to Chinatown.

Tuesday the 31st was our rabbi last official day before his sabbatical of three months off, so we fit in one last staff meeting and then poof!  May was over.  On to June (but that's another entry.............)

Got to Admit, It's Getting Better

You would think that while I await the biopsy results of a little pink itchy patch of skin located on what seems like the only piece of frontal real estate that is NOT already numb, I'd feel worse, not better (especially since there will be another surgery and scar involved, I'm sure.) But, not so much!

It's gonna be what it's gonna be. In the meantime, I got good test results from the gynecologist, so scratch that off the list for a year:). Next up on the non breast cancer-related health maintenance hit parade, a colonoscopy (but not right now!) And, although my visit to the dentist (and hygienist from hell) resulted in a cavity - which, by the way, is probably caused by another tamoxifen side effect - "dry mouth" - I still feel better, not worse. Interesting and I don't even care why; I'm just thrilled that my reaction is back to non-tear producing semi-normal!

Whatever the label I put on it (discouraged, down, etc.) IT seems to have subsided. I don't remember doing anything differently; maybe as I unraveled the knots that are May's events, things just. Got. Better.

Tomorrow night is Ari's confirmation service and it's going to be great. He has grown up so much in this way, and I can't wait for him to shine. But first, he's going to sing two (count 'em, two) solos with his chamber choir at a competition tomorrow down near Great Adventure (six flags amusement park, about 2 hours away.)

And so......in order to be sure he gets back in time to shower and dress for Confirmation, Rod is driving down there and I am riding the bus with the kids (leaving 6:30 a.m.) so I can escort him out of the park when Rod arrives. Like I said, it's going to be a great night but I think we are going to be pretty tired!

Saturday is our day to breathe, then Sunday is the congregational 40/10 celebration BBQ, Monday is the last "long day" of religious school, then Tuesday the "real" last day of religious school sessions, then Ari's choir concert, Wednesday day to breathe and Thursday we'll celebrate Rod's birthday (which is actually the 24th) with a really nice dinner with his parents and our boys and Jackie.  Friday we go to Baltimore for Digital Overload. And, we'll be back in time to go to dim sum (hopefully) on Memorial Day itself.

May is turning out to be all the good things that it promised. Very nice.

Patience Enough Not to Become Discouraged

Although I am not depressed, I am, I have decided, discouraged.  Impatient with my recovery progress as it pertains to my physical and psychological contentment with my new self; overtired from worries (perceived) large and small; unreasonably overwhelmed with the end of religious school flurry of activity.  All of these things, except the first, are things I can and should be able to “handle” and the last, savor, or at least, take in stride.

So I have installed at my desk an enlarged, highlighted (pink, of course) photocopy of a prayer from our congregation’s prayer book, which asks for, among other things, “patience enough not to become discouraged.”

This morning my dentist’s receptionist called to ask me if I would have my appointment with a hygienist instead of the dentist himself.  This may not seem like a big deal to most people, but I finally found a dentist I liked over 20 years ago and have followed him from place to place.  We have a good relationship, and he knows that using phrases like “I see we are not flossing regularly” with a grown-up is not only a waste of breath, but also a way to lose a patient.  Also, he does his checkup as he cleans, so it always feels more efficient!  For whatever reason, he has indulged me and done the cleanings himself ever since I’ve known him.  And this morning he has an emergency and he needs to deal with it while I get my teeth cleaned, and will check on me after I’m done with the hygienist.  My point (and I do have one) is that I acted like a mature person and agreed to come in anyway, then got off the phone and had a little cry.

Like I said, things I should be able to handle.  Tonight is our Teacher Appreciation service, normally a time of immense joy; a lot of fun to sit with my teachers at services and say nice things to them in a public forum.  Guess I’ll pray for more patience while I’m there.

Annnnnnd.............Blogspot was down for a while.  Back from dentist with small cavity. (No, I didn't get it there; it's just when he found it.)  Cleaning was actually pretty awful.  I never realized how used I was to the way Dr. Boff works (chatting about baseball and such the whole time, etc.), and the hygienist, although I am sure she was not trying to be unkind, did a whole lot of things that made me uncomfortable.  Cavity will get fixed in June.

Let's get through May, first.

The Anniversary Waltz

Tonight on the way home from work I nearly pulled over to have a good cry.   But I didn't, just worked out a couple of sniffles and a good strong "get a grip" thought kept me on the road. 

Monday is always a long day, and for better or for worse there were a couple of disappointing thing that happened at work that were no more, or less, bad than anything else.  I think it's just the way they hit me, and I'm tired.

I've been sleeping rather poorly and am tempted to get back to the Ambien, just to survive all the (good) things coming down the pike for the rest of May.  We'll help Alex move back home in a couple of days, our annual teacher appreciation service is Friday, then Ari gets ready for his 2 (count them, 2) solos in his choir concert, but first, his confirmation service is on May 20. Religious school feels like we left every activity until the last minute; May is just packed with special programs and the last days of school are only about 2 weeks away! 

A couple of weeks ago I told the therapist that I was feeling kind of down, and that I hoped it was not the depression coming back.  But the highlight (or probably lowlight) of it the last time was a lack of appetite, and that doesn't seem to be an issue, nor do I want to go to/stay in bed all the time.  And, this evening's brief episode notwithstanding, I haven't really felt like crying for no reason.  So, I tried to explain that it wasn't depression exactly, but a kind of loss of enthusiasm, or energy, or something like that - more of a sadness, but not terrible.  She pointed out that (almost to the day) a year had passed since my diagnosis, and that, like the loss of a loved one, for a while I might notice this kind of feeling around this anniversary, and those of the surgeries, or maybe just the "big" surgery at the end of June. 

Her words were actually quite reassuring.  Forewarned is forearmed, I guess.  It didn't take away the feeling I am having, but it did make it understandable and best of all, it'll go away eventually.  I don't think she said "just go with it" but it was something similar. 

It's another timing thing.  The trick is to be able to wait for the time to go by to feel better, or to look better, but in the balance not to waste the time and, gosh, there's that patience thing again.  Just gonna have to find some more of that somewhere.

Timing is Everything

   For several days after our seder at Passover, I felt much the same way I had following Thanksgiving - wiped out (almost ill, but not actually.)  I thought back on if there was somehow more work, or less sleep, or less help than usual and to all of those things the answer was - not really. It was the same amount of everything.

   After all, it's been awhile since the last surgery, and long enough, I figured, to be not tired like that.  I even took purposeful breaks between the cooking and cleaning.  Although by the time all was said and done my back and feet were sore from standing in the kitchen, they always are, so I didn't think twice about it.


   When I stopped to consider my own line of thought,  which was that it's been quite "long enough," I realized I was wrong.  It hasn't been long enough.  It's only been since January, and that's a little over 3 months ago.  From last April, when this all started, through 4 surgeries and what seemed like an infinite merry-go-round ride of miscellaneous anxieties, disappointments, reliefs, and decisions - it was relentless.

  In retrospect, there was barely time to really recover from one procedure before it was time for the next, and there was that whole everyday life thing to keep going with as well!  It hit me harder than I thought, and like getting off a really really long merry-go-round ride, I guess I am, metaphorically speaking (although not visibly, thank goodness) walking with a bit of a "side lean!"

  On one hand, I'm still reminded every day - maybe not every second or every minute any more, but for sure every hour I'm not sleeping, that something is different.  And my mind goes right to what that something is, and I stop, and consider if I'm feeling better about it.   I then remind myself that it's going to take time (some say a year at the very least) to get to feeling more normal.

  So, if I am supposed to give myself the benefit of plenty of time to feel "better" then why was I so surprised about the post-Passover exhaustion?  I don't know.  But at least now I realize that I can't just give myself the benefit of realistic recovery time in one part of my life and be impatient about it in another.  It's just going to take time, and that's all there is to it.

I'm Still Here

Yes, I know my last post was January 19.  Apparently I was busy or something.  The short update is that I’m still healing, so there’s still some pain and itching and awkwardness both mentally and physically.  Details follow.

Celebrated bra-less nights as of February 19 after helping to officiate at a Bar Mitzvah (not just any Bar Mitzvah, but the rabbi's son's Bar Mitzvah, and it was amazing), saw plastic surgeon on March 16 (OMG thanks to Elyssa for going with me while Rod was on a business trip) and don't go back until September. But next date to keep in my sights is May 1, after which I don't have to wear a bra in the daytime if I don't want to - just in time for the warm weather floaty tops! (In a decidedly twisted twist, the long line bras are more comfortable than regular bras because they don't cut in so much around the band - that area on both sides is (still!) tender.

In the meantime, I will use the summer to make some decisions regarding further work, i.e. removing fat (unfortunately not all of it, just a little) from the abdomen to fill in a "soft tissue deficit" where the mastectomy removed all of the mammary tissue and left a bit of a dent (shorter way of saying "soft tissue deficit.)  Also must decide about tattoos to mimic the physical characteristics of my, as they say, original factory equipment.  (I believe headlights would be a reasonably appropriate and non-clinical term to use here - but that's as far as I'm going.)

Dr. D'Amico is still delighted with his own handiwork (using the word "cute" far too often for my taste - what grown woman wants to have that area described as cute?  Really!)  But I have now been to my own doctor, his nurse practitioner, my chiropractor, and my oncologist, and they have all pronounced it as very fine work.  So, that's good.  I like when all of my medical professionals have respect for each other's work, even if they're not necessarily enamored of one another.  (Breast surgeon thinks plastic surgeon is crazy; plastic surgeon thinks breast surgeon is uptight; oncologist things plastic surgeon is "an interesting guy.") 

Also while Rod was away mid-March, Elyssa went with me to the oncologist, whose office is, I swear, one of the happiest places on earth considering what business they're in. I reported that I was dutifully taking my Tamoxifen, that I had stopped my Celexa (depression med) and also the Ambien.  Getting off the Celexa was important not only because it means I don't need an anti-depressant, but also because it is one of the medications (though low on the list) that interferes with the efficacy of the Tamoxifen.  I switched out the Ambien for some Advil PM and THEN learned (through what they tell you not to do, which is look up stuff on the Internet) that Benadryl, the ingredient that makes you sleepy in Advil PM, potentially interferes even more than the Celexa does.  So, now I'm trying my trusted low-dosage of Ativan if I wake up in the night and can't get back to sleep.  Which happens every night.  Yes sirree, the hot flashes, night sweats, insomnia, and (more) moodiness (sorry, Rod) are not only side effects of the Tamoxifen, but could also be exacerbated by my age and my proximity to menopause.

I'll go back to the oncologist in the fall for an estrogen level test (to see if I need to move to another medication - Tamoxifen works better when you're still making estrogen) and a bone density scan. In the meantime, sometimes we sleep with the window open on my side of the room, even when it's below freezing outside.  Thank you, hot flashes.  And, if one more person at work asks me "Aren't you cold?" as I wander the halls in short sleeves or sleeveless, I am going to go a little sleep-deprived crazy on them.

Also mid-March was our congregation's 40th anniversary celebration, combined with our rabbi's 10th anniversary celebration, locally known as the "40/10."  It was a crazy (good crazy) weekend, including our Purim Shpiel (photo of me dressed as Melanie from Gone With the Wind/Esther on my Facebook page,) a dinner-dance, and a Friday night service that was almost 3 hours long but "rocked the house."  I got to sing a song with one of my Jewish folk idols (also immortalized in a photo on Facebook,) in front of a microphone and everything, plus I made a brief, and if I may say so, well-received, presentation to the rabbi.  (This, by the way, is how my regular doctor pronounced me no longer depressed - he asked me if I was doing less than I used to.  I said that considering the whole rabbi son Bar Mitzvah thing and the singing in front of everyone thing and speaking in public with a little ad-libbing thing, I was doing more, not less.)

Holding all of this together is my regular visits to my therapist, who manages to make me think clearly enough to untangle little problems masquerading as big problems.  I don't know if my depression would have naturally dissipated over time without her help but I wouldn't have wanted to find out.  I'm going to stick with it for now; I don't think I can afford not to - not quite yet.