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.

Just Like Pulling Off a Band-Aid

Times about a thousand. That's what it felt like. But I was holding my breath so waiting to hear if he was just replacing it with another, that the pain was kind of forgettable, especially when you consider all the other nonsense I've been through. The doctor actually said something about putting a new one back on, looked at me, and I shrugged and told him I had lowered my expectations. Then he saw how unhappy my skin was where the bandages and gauze packing had been, and decided to leave it off.

So, I have just gotten out of a REAL SHOWER:)

And my next appointment is in two months. But in the meantime he wants me to wear, if not the LLB, then something with a similar amount of support for his interior "shelving" sutures, 24 hours a day. I did make a plea for nighttime relief on the theory that gravity did not pull in the same direction if I was asleep in bed, but he wasn't having any of that. He split the difference with me; 24/7 for the next month and after that I can have nights off:)

In the meantime, he really does refer to my particular bra by my name (as in, "We should get this patient into that Rebecca bra.") I don't know if it's just that my perspective or priorities have changed on many things or if I'm just really tired or what, but the visit was almost kind of fun.

Sore but happier (and cleaner) tonight..........

Getting More Than Their 15 Minutes of Fame..............

My next appointment with Dr. D'Amico (to re-bandage or not to re-bandage?  that's the $64,000 question; and, could we go back to 12 hrs on, 12 off on the bra, or better yet, go LLB-less?) is tomorrow at 4:15.  Today Diane, the receptionist called and left me a message to confirm.  (I missed the call because I was attending our staff meeting via phone. I was too freaked out by my drive at 8:45 this morning uphill to the high school and downhill from the high school, in the ice storm, to go out again.)

I called back to confirm that I was confirming (whatever) and the office manager ("oh! perfect timing!") wanted to talk to me.  "Here we go," I thought.  All these months of not having to pay anything, just being grateful the insurance was handling what is literally hundreds of thousands of dollars in expenses, and it all comes to this moment.  The one where she says they're so pleased I've been their patient and we're all so happy together and by the way, how did I want to pay my exceedingly large outstanding balance?

But, no.  Dr. D'Amico was so impressed with my long line bra usage and my results with that particular bra, that she had been asked to find out from me where I got them and what brand, model, etc. they were so that he could recommend it to another patient who is having the same surgery I did.  After letting her know I would happily cancel my planned (date TBA) bra-burning ceremony and (after laundering, of course) give them to anyone who wanted one, I told her the pertinent details, and we said "see you tomorrow." 

Funny thing about those damned bras...................

Today's Yuck and Yippee

There was a book (and then 2 movies, which I never saw) called "Cheaper by the Dozen."  What I remember most is that the dad in the book took photos of his family doing things and then he created what he called "time motion studies."  With 14 people in a house, I guess they needed a way to save time!

At any rate, the thing that stuck with me (for 40 years!) was how they figured out to take faster showers.  In college I used their method to get clean during TV commercials, especially when our apartment was cold!  Wash hair in kitchen sink during one break, rest of washing during another.  Having never owned a "soaking tub" or anything else that allowed my whole self to be immersed once I was over 4 1/2 feet tall, it's always been showers, the shorter the better.  And I didn't particularly care; it was just part of getting ready for the day/going out for an evening.

Even right after my mastectomy, when the surgeons told me to go home and take a shower because it would make me feel human again, it was so much trouble (balancing drain bulbs and trying to not "scrub" certain places) that it made it still more of a "get in and get out and get it over with" procedure.  I even started showering in our SOT (shower over tub, in real estate lingo) bathroom instead of the one in our own room, which is a stall shower, because at least I could maneuver myself around a little easier.

Then sometime in the fall I took full possession of the "big" (Andrew's) bathroom when he moved to Fairlawn.  Rod installed a hand-held shower head for me and I moved in my shampoos, conditioners, girly poufy thing, razor - the whole shebang.  And I started to love the shower.  I now spent a whole TEN minutes in there - it was awesome!

But fate intervened in the form of this ridiculous tape/gauze thing that's been glued to my midsection since January 4, and now it's 1)wash hair in kitchen sink or leaning over tub 2)wash face in sink 3)wash lower body in tub with handheld shower head 4)"wash" upper body (waist to neck, inclusive) with wipes from CVS that are supposed to clean you without needing a rinse.  They mostly work, but still................A wise woman (Iris) told me not to expect to have the bandage removed when I go this Wednesday to the surgeon, so I won't be disappointed.  So, I've changed my hoping to just getting the bandaged changed out for a new one, since the tape is curling and sticking to everything I put on, and it's getting a little itchy under there. (If you've ever had a cast on, you know what I mean.) I daren't even hope for a shower; if I were superstitious I'd buy out CVS's supply of wipes in the theory that the more prepared you are for something, the less likely it is to happen:)

But where would I like to be on Wednesday night (maybe ALL of Wednesday night?) - in the shower!

ON THE OTHER HAND,

Friday night was Shabbat Shirah and although I wasn't up to singing with the choir, I was still able to sing many, many favorite songs from my place in the pew.  There was so much sadness about the recent death of Debbie Friedman, an iconic Jewish music composer/performer, but there was also so much joy singing her songs and those of others.  It was such a warm, wonderful evening inside while there was still about a foot of snow outside, left over from two storms we had within two weeks of each other.

This morning our family ventured into Chinatown to try to find a replacement for our favorite dim sum restaurant, which Rod and I had been going to since before we were married, and which had closed without warning a week before a planned visit for my birthday, so, way back in June.  Wonder of wonder, miracle of miracles, this morning it was open (had opened on Friday,) with a few of the wait staff and "cart ladies" we had so carefully cultivated over the years still working there.  I actually got a hug from one of our favorite waitresses, Josie!

The food was unchanged (i.e. delicious) and everything we wanted came by on the carts.  I can't remember the last time I smiled so much.  Over the years, we've introduced a lot of people to this place and even though we hadn't brought anyone with us this morning, we decided it was okay that our nuclear family was "helping" the place re-open!

On our way to drop Andrew off in Fairlawn, we stopped at the Kosher Nosh to pick up some "supplies" - thin-sliced (fatty) pastrami, pickled green tomatoes, apricot "shoe leather" (okay, fruit roll), rye bread, kishka (stuffed derma) and gravy, tongue slices......................we dropped Andrew off with his own supply of pastrami and rye and headed home. All this before noon!

Tomorrow Ari goes off to sing at an MLK event with his choir and Alex goes back to school, but Rod has off so I'm going to hang on to my "long weekend" as long as possible.

Higher Math

When I last reported the unfortunately timed drip-cough-throat situation on January 2, I said it had started 5 days before the surgery, which led some readers to think the surgery wasn't until 5 days after that, or January 7.   (Coincidence that the 7th is today, but the surgery was, indeed, on the 4th.)

Perhaps it was not so clearly stated, but entirely forgivable under the Blog Writer's Code of Self-Absolution, which I just made up (and shall unashamedly fall back on for future incidents of ambiguous postings.)

Yes, it's now a cold. (as in, when I told everyone taking care of me in Pre-Op that I just had a little drip and cough they said "it'll probably be a full-blown cold soon.") So far, it is not a sinus infection. Everyone keep your fingers crossed.

So, ON THE 4th, they used general anesthesia, which meant a tube in my already-sore throat. This has hampered recovery "just a tad." I did have a minor (3 or 4 tears) meltdown when the anesthesiologist told me about it. But in the end, out cold is out cold and once you trust your doctors, that's that.  Besides, I had slathered my arm with lidocaine cream in advance and after a few tries, they got the IV into a place where it did not hurt.  Small but significant victory in the battle to find roses amongst the thorns.  And no drains this time.  Woohoo!

Although there is only one incision, in the same spot where the original was from June, all of the pain is coming from work done under the surface, some kind of support structure built and anchored with stitching to my ribcage, or something like that. This requires a big adhesive tape/gauze combo that is actually glued to me and runs from under my right arm all the way across my front. It has to stay there for at least the next two weeks and IT CAN'T GET WET! (Ever enigmatic, the doctor's answer to "how long does this have to stay on?" was "we'll see.")

Yesterday at the follow up appointment the nurse (as gently as she could) peeled off the big patch of tape, etc. and the doctor re-applied a new one.  He told me to "stop acting like such a patient" and "get off all that medication" (which he had prescribed, thank you very much.) So, I have packed away the valium and the percoset in the nightstand drawer (for just in case) and going forward will try to get along on extra strength Tylenol until they will let me go back to my beloved Advil.

For those of you who have had any kind of surgery that somehow affects your rib area, you know that coughing really adds insult to the injury, literally.  So, I try to always be near some kind of cushion to hug tight!

Rod found a vaporizer buried in our accumulation of "stuff" in a closet and it has made a huge difference.  Between that, my Ricola cherry-honey drops, magically self-replacing Kleenex boxes, Sudafed and a steady supply of soup from friends, this unfortunate complication is made bearable. 

Besides, it has taken my mind off of trying to figure out how to get through the next two weeks without a "real" shower..............

 

Like Two Drips Passing in the Night

With my next (and hopefully last) surgery 5 days away, I get a drip down into the back of my throat.  By New Year's Eve my throat is scratchy and at night I cough.  Terrific.  No stuffy nose, no fever, nothing else.  Maybe some itchy eyes.  I tell myself it's allergies.

Of course New Year's Eve is a Friday, then it's the weekend so I'm not calling the surgeon's emergency line to see what's okay to take.  There are a lot of restrictions on medication for 14 days before a surgery; the list is 2 pages long and it's not even "all-inclusive!"  Tomorrow (Monday) afternoon is my appointment to get marked for the surgery, and I figure since I sound much better in the afternoon than I do first thing in the morning, maybe it won't be so obvious. The only real issue I see is that there's no food or drink after midnight and I have survived the last few nights with water and cherry lozenges.  (When I lie flat I cough.)  So I'm going to have to ask about that and hope he doesn't cancel on me.  I find myself trying to remember if the surgery "bed" is totally flat and the ridiculous imagined scenarios take off from there.

I had no real worries that close proximity to lots of people via our annual New Year's Eve and Day hosting activities would pose a threat to me, and I don't think it did.  It was tiring but wonderful to see everyone.  It was also great to chat and laugh and enjoy people enjoying each other's company.  Everyone helped out and thanks to Rod and our friend Linda, the dishes and house were cleaned up by 5:30 yesterday, which is not bad considering that people were with us continuously from about 6 p.m. on Friday through 4:30 on Saturday! 

Last Thursday I actually drove myself (for those who know me well, this is a very big deal) down to Englewood to the surgeon's office, where I handed in my pre-op "permission slips" and the nurse removed some stitches from my back that have worked their way to the surface and were snagging on the godforsaken bra.  (Surgeon was on vacation.)  She (Donna, the nurse) says I must be one of their best patients; apparently nobody else wears their LLB  for as long as the doctor would like and I'm still very careful about getting in my 12 hours per day! Then as long as I was in the neighborhood I swung around to the hospital for the EKG I didn't know I needed until Patient Admissions called that morning to say mine was out of date.

Now the meticulous planning, scheduling, anticipation, anxiety and hoped-for relief for the beginning of the end of this process may be waylaid by a stupid drip.  As I time my cough-free periods and try to see if one of them is long enough to equal the hours in surgery - which so far they don't - I'm getting a little obsessed. Rod says I have over 24 hours to feel better, and I should focus on that, but there's no infection to fight (I'll have antibiotics right after surgery anyway) and there's not much else I can do but rest, drink fluids, and count on the understanding of the surgeon who I hope by now is willing to work with me under not the most ideal circumstances.  I keep telling myself that a)it's not a long surgery (out-patient, IV sedation only) and b)he's just as ready to get me "finished" as I am.



Besides, it's allergies.  Probably.