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.