Tuesday, January 18, 2011

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...................

Sunday, January 16, 2011

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.

Friday, January 7, 2011

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..............

 

Sunday, January 2, 2011

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.

Saturday, December 18, 2010

Playing Catch-Up

The last time I wrote was November 11, right after the last drains were out and I was feeling a little "at sea" about how I was going to deal with, well, not dealing with them.  The day before Thanksgiving was my most recent appointment with Dr. D'Amico, and he was very pleased with the progress of the healing and ready to book the next surgery, after the new year.  (Turns out to be January 4.)

  Of course, I asked the inevitable question: "How long do I have to wear these bras?"  His answer (one of those joking, but not really joking responses): "a few months ............ or maybe 2 years."  He says it's hard to know because all the time the bra is on, there's no seroma happening.  Even now that simple, inescapable truth is what keeps me putting the stupid thing on every morning, almost 2 months after surgery.  He did add that I should "wean" myself eventually to 12 hours on, 12 hours off, which is not my own definition of wean (in which case I would end up with it off forever after a few weeks) but he has me well trained by now!  That, combined with his assertion that he has not seen a seroma in years from one of his latissimus dorsi patients, sits foremost in my mind as I hook all 12 hooks and that "wean" thing accompanies my sigh of relief when I unhook them to go to bed.  (That first week of trying NOT to wear the bra were ironic, though.  I'd go to bed without it, wake up a few hours later just knowing that some terrible thing was going to happen, and put it back on. )

I was laboring under a pretty major misconception for a while, I realize now.  Because the October surgery itself was shorter than my June mastectomy surgery, and my hospital stay was the same length, I somehow equated that with a similar, or even shorter, recovery period.  Duh.  For a person who tries to be educated and aware of what's happening to her body, that was a fairly ignorant assumption!  So, for the first month I kept thinking that I ought to feel better, and be less tired, and less sore and it was exactly the opposite.  I said to someone that I expected all of these things "by now" and she said that she didn't, since it was such a major surgery.  Huh.  (close relative of Duh, and not by accident, I think.)

So, as of today there's still enough pain along the long back incision for me to take a couple of Advil three times a day, but not enough for me to succumb to using 1/4 of a pill of Oxycodone (which I keep on hand "just in case.")  And the most "uncomfortable" places are actually below the incision, where I think the latissimus muscle was detached, and where the three drains were placed.  Topside, we're just on the lookout for anything untoward in the ongoing process of healing, but it's numb anyway so bad news/good news.  And the bra itself can only be one size even though I'm currently two, so one side fits and one side is too tight.  (I am SO over the nighttime "missing the bra" thing.  Now it's just a sigh of relief.)  And the damn itch, which I know is a good healing sign, but trying not to scratch reminds me of the chicken pox and German measles I had as a child!

Thanksgiving was lovely; we had 12 for dinner and even with careful planning and Rod taking a star turn in the backbreaking labor department, I spent all the next day in bed (flat on my back for a lot of that.)  Sitting/standing straight for long periods of time is still draining and, depending on the chair, downright painful, but as I look back (in time, not in the mirror) I see that, to quote the Beatles, "I've got to admit it's getting better, getting better all the time."

I won't see Dr. D'Amico again until January 3, to get my markings for my next (and hopefully last) surgery on January 4.  It's out-patient and scheduled to begin at 9:30 a.m. so there is time for me to get the kids to the high school and Rod and I should be back home from the hospital in the early afternoon.  IV sedation (not in my hand, maybe?  we'll see how convincing I can be with the nurse) instead of general anesthesia and no hospital stay.  And maybe - although the doctor won't promise but he was optimistic - no drain.

So far, so good in the tamoxifen side effect department, and I'm hoping to wean (in the real sense of the word) myself off of the sleep aid and the anti-depression medication early in 2011.  Hard to believe it's been less than a year since my diagnosis.  I don't know if this is my subconscious protecting me or what, but it's getting harder to remember what my body was like "before" all this.  However, I'm glad that my "after" picture is getting closer!

Thursday, November 11, 2010

Now I Know How the Slaves Felt

You know, the ones who exited Egypt with Moses (parting of the Red Sea, etc.?) After they escape to the desert, they turn into a bunch of whiny children, paralyzed with the fear of "What now?"

As of today, all my drains are out. I can drive and work as long as I lift nothing heavier than "a teacup or a telephone."  I'm not to do too much with my upper body, and now the LLBs and my own good behavior are the only things standing between me and deadly fluid buildup. All this kind of tentative movement and caution is for at least two more weeks, with my next appointment the day before Thanksgiving.

So what do I do now? When Rod dropped me off from my appointment today I was dazed and a little shell-shocked, not to mention sore and tired from my big "outing." (I had trained myself not to expect too much from my visits, and I hadn't really prepared myself to be freed of both of the remaining drains.)  The receptionist, when told they were gone, said, "You must be so happy!" Probably I am. But I've been tied to these things for so long, been careful with my movements, dreaded the inevitable tug and burn, measured output twice a day, every day, that I'm not sure what these next weeks are going to bring. I am very aware of what could go wrong, no matter how hard the doctor (and Rod & I) have worked. This summer's Louie infection/failure/removal misadventure taught me that.

For sure I don't want to go back to the "slavery" of the drains. Tomorrow afternoon I'm going to pick up the high school carpool; driving for the first time in almost a month, I'm a little scared. How will I know not to "overdo?"

I think it was once again my wise friend Lois who found a quote that I like for this particular quandary. ( I'm paraphrasing because I can't remember it exactly.) It's not precisely on point but it's close enough:  "If you want God to guide your footsteps, you have to be willing to walk."

Even though I'm pretty secure in the knowledge that I've got family and friends to nudge me appropriately forward or hold me sensibly  back, it's going to be challenging.

But - bed first, walk (drive?) tomorrow.

Thursday, November 4, 2010

Picture This

I've been waiting for two more LLBs (in a smaller size, which is what Dr. D. really wants me to wear 24/7 for maybe 4 more weeks) to come into the surgical supply company/mastectomy boutique right near the doctor's office.  Every day I call and they say, "by the end of the week."  Today I had a followup visit at 11:15 a.m. and called to see about the bras.  "Not yet" when I called while waiting to see the doctor at 11:15.  "Not yet" when I called while waiting for the doctor at noon.  "Not yet" - well, you get the point.  We finally saw the doctor at 2 (he had a surgery that took longer than he thought,) and still no bras.  At 2:20 we swung by the place just in case.  As I'm preparing to defend myself against being considered that horribly impatient customer everyone hates, someone goes into the back room and voila: bras!

I don't know if anyone remembers long line bras (I certainly never owned one) from maybe a grandmother or a mother - at any rate, they're not medicinal looking, have lace and such, in a good, inconspicuous neutral beige color.  There's a bra part attached to a kind of corset.  Unfortunately, not like a really cool pirate queen lace-up vest or one of those Frederick's of Hollywood things (although I did check those out to see if they would be cheaper, but a) they're not cheaper, and b) they're not really about compressing your back, are they?)

At any rate, having waited for the doctor for nearly 3  hours, with Rod idling in the car (and needing to drop me at home and go back to work,) I still wanted to try one of them on just to be sure, especially at $60 each.  So I started unbuttoning my shirt at the counter, and the saleslady says, "Wouldn't you rather use a dressing room?"  I say no because I've got a tee shirt on under the other (bigger) LLB anyway (nicer to have something soft against my skin and I can wear a clean one every day -  and the doctor has no problem with it.)

So, I've got my layers - tee shirt, then LLB, then outer shirt, and I'm in a hurry.  Along with telling her about the tee shirt and continuing to unbutton my outer shirt, I make some crack about if Madonna could do it, so could I.  As I finally yank off the shirt another lady sitting at a nearby desk (who I guess hasn't been paying attention) almost snaps her neck jerking her head up and says "You know there are some men around here, right?" By this time I've got old LLB off while I ask the saleslady to do up a couple of the 12 hooks on new LLB so I can check the fit, and I'm re-explaining the tee shirt thing, while standing right there in a tee shirt.  Maybe you had to be there, but I thought the whole episode was pretty hysterical. Perhaps I was not their typical customer.

(I think that those of you who have been my friends and relatives for a really long time would agree that in a million years this outrageous behavior is not that of the shy girl you knew.  But if you pause to consider, recognize that I got my training in the "real" Filene's Basement with Mom in her opaque tights and full slip, right there in the aisles.)  I have gotten a lot braver, and learned a bit more about which things are important.  Not enough yet, but more.

For the scorecard, one back drain out (OMG that one hurt to come out - I'm glad I didn't know how much.)  No work, no driving.  Next appointment Monday at 5:15 at which time he hopes to remove both other drains.  I, of course, ask to go back to work on Tuesday.  He says no.  I believe his words were "Let's take it a week at a time, okay?  Don't you have a couple of good books?"  He is still very happy with the results of his work and my custody of it.  He says he has a "perfect record" of no patients with seroma, and I have no desire to end up with more drains, a bigger scar, another all-IV inclusive hospital stay, or any other unfortunate thing that the dreaded seroma would cause.

Many, many thanks for the office coverage, the driving, the edible and non-edible support and everything in between - the prayers, the friendship, the love.  It's a powerfully healing combination!