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!

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.

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!

Now Playing in Milwaukee

I have been home for exactly a week, and (for those keeping count,) still 3 drains in.  But my hero and (who knew?) personal expert medical assistant, Rod, gently pulled out the novocaine pump tubing early last week.  There was much closing of eyes and wincing (me) and statements like "wow, look at all that tube that was in you!" (Rod) and "eww, just throw it away" (me again.)  And just like that, one less thing to carry around in my ever-present fanny pack.

We went for my first followup visit on Thursday and Dr. D. was so pleased with the results that he asked his office manager to take photos (of which she took many) so that he could use them during a presentation he is giving this week in Milwaukee!  I asked them to bring me back some brauts in exchange but nobody got that joke except Rod, so I guess I'm not getting any brauts. Maybe I should have asked for some nice cheddar, which would have made a more obvious piece of humor but I didn't want cheddar.

To further demonstrate his happiness with the outcome he showed me, or rather, new & improved Louie, to every person in a medical uniform in the office!  I am under strict instructions not to drive or work.  And I must wear a long-line bra (12 hooks, can you believe it?) 24/7 except for showers.  I had already purchased one, but he pronounced it too loose, so I've got two more on order in a tighter size.  I have no idea how long I have to do this.  But at least I know why.  I've got an incision on my back that runs from just below my shoulder blade to almost the top of my hip.  The compression from the long line bra (heretofore known as LLB) will help to prevent fluid building up, which is to be avoided at all costs.  That would be a seroma, and I haven't Googled it or anything,  but judging by the look on his face when he says it, I shall work to do what he says to make it not happen to me.

The drains that are the most aggravating (call them a discomfort, call them painful, call them an inconvenience, they're thorns by any other name) are the two that come from the back incision, because they come out just above my waist, precisely below the bottom of the LLB.  Like all my drains have been, they're sewn in with a couple of stitches and not much keeps them from moving, which is a nasty kind of painful burning feeling.  But the one under my arm (which drains fluid from the front incisions) is immobilized nicely by LLB.  Their reservoirs (fanny pack residents) all get emptied twice a day and I keep a reasonably honest log of the measurements; if my 24 hour total gets low enough on any of them, I can call the nurse and get over to have it taken out. Talk about your little victories:)

Many of you will appreciate the conversation that ended with "No work yet."  It started with "Can I go back to work this week?"  He asked me how far away work was from home, and if I had someone to drive me.  He asked me what I did for my work.  I told him if he let me go I would still have my "back-up" adults with me and I would just do some paper pushing and make some calls, things like that.  I don't know how he read between those lines, but apparently he did. He knew damn well if I got to work I would push more than paper and I can't say he's wrong.

I was told to drink plenty of fluids, do breathing exercises to keep up my lung capacity, move about a bit, and get outside for some fresh air.  Since I got home from the hospital I have been to two funerals and one Bat Mitzvah service. I'm pretty sure it's not exactly what he meant but an outing's an outing. Besides, we get along pretty well now.  He looks at my lists of questions at every visit, and he makes sure he's answered each one before I leave.  It's nice.

When Dr. D. came to get me because it was time to do the surgery, he crooked out his arm escort-style for me to take and we proceeded, like Dorothy and her entourage on the yellow brick road, down the hall towards the operating room.  (Rod & Joel are my witnesses.)

The irony has not escaped me that (1) I was Dorothy in the Purim spiel two years ago  and (2) for the most recent spiel (about a month before this cancer was found) I was the "Housewife of Shushan" whose over-the-top characteristic was an exceedingly "enhanced" bosom.  Good one, God.

  I'm not sure if this small but really meaningful (to me) gesture was some kind of turning point in our doctor-patient relationship, but I do (suddenly, it seems) feel like we are working together, like he is rooting for me to be happy with the results.  (I know it wouldn't hurt his ego either, but......) It boggles my mind to think about how much skill and care he has, and will, put into this continuing reconstruction, and I am going to do my best to keep up my end of the deal.  He estimates the next surgery will not before the end of the year.  I'm just going to have to be a good caretaker of his work thus far, and wait.

(There goes the doorbell again for trick-or-treaters.  So, the hospital roommate from you-know-where story is going to have to wait for another day.)

Quick Post from the Front......and Back

Awake, sort of alert, and with a bit more pain than last time. But in hospital parlance, I'd say still a bearable level 2. Drains- 3, novocaine pump, 1.

Dinner's "lemon water ice" best thing I've had all day!

Maybe tomorrow will be tastier. If not have Skittles & Hershey with Almonds in my bag;)

Like a Cat in a Room Full of Rocking Chairs

I think that's the saying, anyway....... 

Ordinarily, I would call it "nervous energy," but usually that can be channeled.  Since this morning, it feels there's just a whole lot of nervous.  The energy is there, but really unfocused.  I have to speak sharply to myself and say "don't just worry, DO!"  And then I can do one or two things that need to be accomplished before Friday morning.

And yet, here I am, my list not really getting shorter, as the time inevitably does.  If I keep adding to it because, if I don't finish everything, it will be a sign that I must (warning: maudlin thought alert) make it through the surgery because I still have things to get done?  I know - get a grip, lady! 

For some reason, this surgery feels more ominous than the mastectomy did.  All I can think is that I had no expectations of what I would look like after my June hospitalization, and now I do.   So, if it's the "after" appearance I'm worried about, why would I focus on the whole survival thing?  It makes no sense, I know.

Some days, you just have to go on faith and trust, but that's not helping much right now.

Darn.

High Anxiety and Small Victories

So, I had this crazy idea (and some time, and a cell phone) and decided to try to reach someone at the hospital who I could talk to about the whole IV/hand issue.  (Thanks to my friend Lois, whose comments about her surgery encouraged me to do this.) 

After several transfers, I ended up with the Anesthesiology department.  The secretary gave me to the nurse-practitioner, who told me she would call me back, as she was with a patient.  I didn't hear from her for all of the next day (which was Friday) so I left a quick message explaining that there was "no rush" but I was hoping to figure this out before the surgery in a week's time.

That evening at 5:30 as I organized things at our book fair in advance of the "browsing only" evening, she called me back.  It was her day off but she said she felt bad that I wouldn't hear from her for the whole weekend.  I didn't even have to explain everything; she had read my entire surgical history, knew about all my hospitalizations, and understood right away what was going on - and when I asked why the IV always seemed to go in the back of the hand she said that it was "easier for the person putting it in."  How about that?  She said she was terribly sorry and that she was putting a big note in my file saying that my IV should be in my arm for my next surgery.  Yessssssssss.

Next up - tamoxifen.  In 2006 when I was diagnosed the first time and had my lumpectomy followed by radiation (the radiation that proved to be Louie's undoing,) there was no lymph node involvement at all at the oncologist had said at the time that she felt the potential side effects were not worth the benefits.  Then in 2008 when they found the LCIS (not a cancer, just a marker) she said maybe it was time, and wrote me a prescription.  Which I promptly misplaced, then found, then contracted Lyme disease, which took a few months to resolve.  Then I lost it again.  Fast forward to the current situation.  Dr. Ligresti says "NOW you'll take the tamoxifen." 

She wrote me a new prescription, which I needed to send in to Medco, the mail order place where we send all long-term prescriptions.  I finally sat down to fill out the forms, and couldn't locate the little blue piece of paper!  (Seriously? Really? )  I finally found it, exactly where I had put it for safekeeping, and sent it in.  The bottle showed up on Friday, along with its page-long list of potentially serious and not-so-serious (but still aggravating) side effects.  In much the same way as I waited to take my first shower post-Louie-removal in the morning (so as not to spend the night thinking about the experience if the reality was too jarring,) I waited to take my first dose until I was at work and about to get on with a hectic Sunday school.  No spending the night wondering if/when a side effect would pop up, and I think I'll continue my strategy.  (I am also heartened by those of you who have done this and had no ill effects.)

I worry what position I will (and won't) able to sleep in for a while,  I need to find a long-line bra (remember those?  I don't really) for post-op back support, I have to figure out how to shower on Friday morning because the surgeon has to do the markings on me late Thursday and I'm not supposed to risk them by washing them (but I'm going to get clean somehow,) and I'm fixating on how I can get out of the hospital on Sunday instead of Monday (nurse said 48 hours maybe; doctor said 72 hours maybe.) I'm still working on whittling down my anxiety components.

IV not in hand, check.  Rod to occasionally bring me food that is yummy from the cafeteria (i.e. a BLT, a salad, decently seasoned soup, etc.) and a chilled supply of ginger ale and Activia yogurt, among other things, check.  Comfy pajama pants so it's a quicker trip across the room to the bathroom (no awkward robe needed to cover a potentially embarrassing gap in the hospital gown,) check.  My Nana's beef and barley soup simmering to be frozen in small batches for a "comfort food" protein kick to aid the healing process, check. 

So many things to worry about, so little time.  But I'm going to keep shortening the list, because it's what I can control - and there's so many other things I can't.

Good Crazy

There's a "belated birthday" greeting card that used to be a very popular item.  On the front it said something like "There's no excuse for me missing your birthday."  Once you opened the card it said "What are you looking in here for?  I said there's no excuse!"  No blog entries since 9/14.  No excuses.  Unless you count the "My blog, my timing" line of defense, with which I absolve myself of this particular crime.

The religious school year revved up right after my last surgery, so it's been a good kind of crazy, not that other kind, that has been taking up my time.  Since then Rod's parents, Tom and Maggie, moved from their house on a mountaintop (or at least that's what it felt like because my ears always popped on the way up and back) in rural western Connecticut to an apartment in Teaneck, New Jersey.  Now they're only 20 minutes away from us and less than 20 minutes from Manhattan!  It's nice to able to drop in for a visit and not have the driving time be longer than the visit itself.

Between their move, all the fall holidays, our upcoming book fair (delivered today,) and everything else that starts with the new school seasons (mine, Ari's high school, and Alex's college,) simply doing what's needed each hour of the day has made the time fly by.  One minute I'm hoping that my next surgery, scheduled for October 22, would be put off just a bit more - the next, I'm wishing it would be tomorrow, already.

We have to be at the hospital at 6:30 a.m. for a 7:45 start, but this one is general anesthesia and a few (either 2 or 3) nights'  stay.  It's time for that left side latissimus dorsi flap reconstruction (see http://www.breastcancer.org/treatment/surgery/reconstruction/types/latdors.jsp for technical details) and frankly, at this point I'm more worried about the devil I know -  the pain and subsequent bruising (pain for a couple of weeks after) from the stupid IV on the back of the hand.  I visited my oncologist also (I have finally sent my tamoxifen prescription in to be filled) and she laughed when she heard my greatest anxiety was about the IV.  I figure it's keeping my mind off what the potential other sources of pain could be after a procedure like this!  I know I'll have a Novocaine pump again and I know I'll have one or two drains, both of which I know how to handle now and neither of which particularly causes pain, just temporary inconvenience and some physical awkwardness.  According to the surgeon, this should be the last major (read: hospital stay) surgery for the reconstruction process.  The rest ought to be all out-patient.

To repeat a quote used by our rabbinic intern, Jen Gubitz, a hallmark of Jewish humor is "the absurd ability to keep us laughing in order not to cry." (Rabbi Telushkin)  I have to once again thank my father, this time for his sense of humor, which I think I inherited, or absorbed, or whatever it it that allows me to say things that other people find funny, which in turn, makes me smile too.  (You never realize what a hot commodity a smile is until you can't find one in yourself.) 

At this point in the game, I hope that I am not "laughing in order not to cry." Instead, I'd like to think I'm just feeling a bit better!

 




 

Getting Even

First of all, thank you to my dad, who suggested the name for this entry!

So, this morning Louie's tissue expander went bye-bye in a brief and reasonably non-traumatic fashion.  The worst of it was the IV placement, subsequent bruising, and accompanying pain.  I do hate that stupid thing on the back of my hand! (which is still pretty sore.........)  At any rate, we got to the hospital a little after 6:30, I went in for the surgery around 7:50, was in recovery by 9:15 (or maybe earlier, but it's when I remember looking at a clock) and we left at 10 a.m.  With, yes, a drain.  And a very, very odd physique under the bandages.  But to paraphrase the wise Dr. Arthur Bernstein (aka Daddy,) from now on it's just going to be a matter of a couple of months until I "get even" and I have to keep reminding myself of that. In the meantime, I've purchased some materials that should work under my clothes to let me feel a little better about my outside self for now.

In the post-surgical chat, Dr. D'Amico told Rod that he was pleasantly surprised by the condition that the tissue was in, and that he thought the "big" surgery might be scheduled as early as a month from now.  I've made my followup appointments, can't drive until the weekend, and the first shower is allowed on Thursday.

One of the benefits of writing this blog is that I can go back and read, after the fact, my entries concerning what I was anxious about.  It's amazing how non-threatening they seem when you read that they've already gone by, as opposed to things that have yet to happen and are therefore still unknown.  And, I can make myself smile when I re-read and remember that healing trip to Staples, the amazing ordination ceremony of David Segal, and all the other good things that have happened along the way.


Okay - hand hurts and I think it's time to take a little break.  All in all, not such a bad day, so far :)

Louie, Louie, You Gotta Go

Yep, the left reconstruction (introduced soooooo long ago as Louie) will be removed on Tuesday, September 14, first thing in the morning.  The doctor is also going to remove as much scar tissue (I think) as he can at that time, and it's a short procedure - I believe he said an hour.  Plus, it's not general anesthesia, just IV sedation, so we hopefully will be home by noon.

  Part of the reason I didn't write sooner is because as of a few days after my last post (mid-August) I made the appointment to get checked out and set the surgery date, and then that got put off.  But, while we were on the phone they booked me for this procedure on September 8th.  Then we actually went for the appointment and we were told that September 8th was not available, but the 15th was, at a free-standing facility nearby.  The next day, there was a message on the answering machine saying that the insurance company wouldn't pay if I had the procedure at that facility, so the doctor's office was checking into using the hospital instead.  (I already knew the hospital is on my plan, but nobody asked me.)

Ralph is doing great.  I guess that's good.  However, after Tuesday I'll have to wait about 6 weeks until the surgery to relocate a muscle from my back to my front (!) and in the meantime I hope to deal gracefully with my physical self being far from symmetrical.

My psychological self is doing okay, too.  I have now been told by two medical professionals that the dosage of anti-depression medication I've been using is pretty much a "placebo dose" and you know what?   I have no reason to discard an invisible, inexpensive crutch until I'm ready.  As I've said before, it just doesn't matter to me right now if it's the medication, or this wonderful woman Luba who I get to talk to sort of regularly, or if time and the hectic work schedule is healing those particular wounds.  I need to feel this good to get on with it.  I still need to meet with the oncologist to begin my tamoxifen, and that has the risk of depression (among other delightful potential side effects,) but it's got to be started or I'll never move on.

Today is Rosh HaShanah, the Jewish new year (literally, the "head of the year") and last night the Board of Trustees representative talked about our own personal "construction" projects.  I think he was speaking metaphorically, but I leaned over and said to Rod, "That's kind of funny; I think I've got one of those already."

Also last night, Rabbi Mosbacher asked us to think about what we would write in a note to our 20 year-old selves from our current vantage point as over 30 year-olds - some sage advice to take advantage of youth, to grab more out of life while we were young, to party more (or party less! )  At first I thought I might have told my younger self (warn my younger self?) that  this thing would happen. 

But I remember four years ago, in November of 2006 when I was diagnosed the first time and I had to have the lumpectomy and the radiation and it all seemed impossible, and I cried on Alex's shoulder that I just couldn't "do one more hard thing."  Well, there turned out to be a lot more of those things than I could have warned myself about, and it's pretty amazing how much you can handle when you have the love and support of so many.

So, unless I get another telephone call telling me that the procedure for Tuesday is being delayed yet again, right foot, left foot, right foot, left foot.  As I have said more than once for the past couple of days, if I can manage my head and manage my pain (what the medical profession calls "discomfort" - hah!) then the rest is just inconvenient.
 

Partly Cloudy!

How can you tell if things are looking up if you're not supposed to be looking?  I think that's a paradox, or a dilemma, or something like that.  Having been given (and taken) the great advice that not paying too much attention to the depression is the first step towards it not ruling my life, how do I know when it's lifting?  Is it "getting better" on its own?  Or is it the very small (but nightly) dose of an anti-depressant medication?  Is it my one (not miraculous but hopeful) visit to the woman who I think will be my therapist for a while?  I don't know and don't care.  But I do know that I'm hungry and eating.  And I'm laughing at bad summer sitcoms.  And I'm having real sessions of industriousness. And the last time I cried was..................

on Thursday night around 7:30 when my oncologist Dr. Ligresti called me to say that I will not need chemotherapy.  So I think they were tears of happiness and/or relief, but whatever;  it was emotion, and I really hadn't felt anything in a while.  She told me to come in to see her in 2 - 3 weeks to get going with the Tamoxifen because one of the side effects is (yep), depression, and she doesn't want me to start until I feel better.

I really did think I had myself geared up to do whatever treatment she felt necessary and I would be okay with it, but I guess my reaction told me otherwise. 

Even before she called, though, I was getting ready to move up my next appointment with Dr. D'Amico to earlier than the end of the month. I feel like I've got to get going with the de-construction and subsequent reconstruction of Louie.  He's a pain in my side, almost literally.  The more he sits there, like a rock sitting on (sometimes digging into) my ribs, the more constantly I'm reminded that I've got equipment not installed in the factory, so to speak.  Ralph I occasionally forget about, and to have times when I don't think about either of them would be the best mental health boost of all.

In the meantime, I've also been trying to figure out why I have resisted visits from so many of you - the wonderful, the amazing, the cheering section extraordinaire.  It's not that I didn't think you could "cheer me up" and it's not that I'm afraid to have people see me.  And it's certainly not that I don't want you to notice that the house is messy.  After all, if you were a friend before all this, you probably already knew about (and in many cases have personally witnessed) my lack of housekeeping skills.  Whether it's a watered-down inheritance of my mother's insistence on privacy (which is really ironic considering the blog) or whether it's my own personal grasp at control in a situation where I have none,  or whether it's something else entirely, I have no idea.

It may be this way until after my final surgery, or it may be less of an issue once Ari gets back into the swing of high school unscathed, Alex, ditto with college, and religious school  (and the whole synagogue season) gets into its regular rhythm.  There's always some level of anxiety and apprehension about that stuff at the end of the summer.

Whatever it is, I'm (paradoxically) working my way out of my little fog by not working too hard at it.  But, in the same way you never really trust the weatherman (or even weather.com) until you see for yourself what it's like outside I need to just "do" and see what happens.  Meanwhile, my partly cloudy is quite an improvement over the leaden skies of less than a month ago.

(Today's weather here in northern NJ was stunning, wasn't it?)

Why Did the Depressed Chicken Cross the Road?

This is a trick question, of course.  The depressed chicken does not cross the road because she cannot get out of her roost in the morning, never mind look both ways for oncoming traffic.  I suppose if she were me (duh) it would be "to get to hertherapist's office, to take her kid to camp, to get to her workplace that she loves."

This chicken is successfully getting out of the house now.  Without crying first.  And she laughs sometimes and is actually hungry and eats. Small steps.  This entry is one of those steps.........

The weather on Cape Cod was lovely, and it was great  to see my dad and brothers and their families, and for my boys to spend some time with their cousins.  It was hard for me because I couldn't (didn't event want to) eat one whole lobster, or finish a whole chocolate frappe (that's what we call them up there - kind of like a milkshake but not exactly) or more than four steamers out of the order.  I didn't want to spend endless hours studying Hebrew grammar, translating sentences and figuring out verbal tenses, unraveling the mysteries of the dagesh, that mysterious dot that pops up where it seemingly doesn't belong.   I didn't even read much.  I didn't want to get out of bed, and when I finally did I couldn't wait to get back in. 

And of course the first few days Rod & I spent much time examining the infected area on the left to be sure it was getting better.  (It took two days for us to realize that our bedroom and bathroom at the lake house are wallpapered in pink and everything took on a pinkish hue; so for a while there was constant stress that it just wasn't getting better until we decided to take a look out in the white light of the sun.) By Monday already I knew that part was getting better but something else was not right.  I should have been so relieved, so happy, so excited, but nothing.  It was beyond sad, and although I usually leave the internet for games and curious facts about famous people, I looked up the classic signs for depression and there they all were.

So, I put in a call to our primary longtime beloved physician and he prescribed something called Celexa, 20 mg.  The local CVS obligingly filled it and the next day I was not only depressed but also now nauseous and yawning through most of the day.  Lovely.  So I called and was told that a) it takes at least 2 weeks to "kick in" and b) to cut the pills in half.  And that's what we did for the rest of vacation.  (We've since changed to 10 mg which we're cutting in half, and I'm willing to give the thing a shot as long as the side effects are minimized.)

I also needed a person, so took recommendations from people I trust for someone to talk to.  More about who I've chosen when it happens, but I've been to one and I've got another booked for next week.  Hopefully that process will get on track soon.

I am trying to stop examining my own psyche to try to "fix" what I perceive as "broken" in myself.  As I was advised by so many, I am trying to just "do."  One foot in front of the other.   And I think it's getting easier.  (Oops, there I go self-examining again.)

On the physical front, I'd like to introduce Ralph and Louie, my reconstructions.  I've decided that it's more fun than "right" and "left" and it made the plastic surgeon smile (me too.)  So call it my refusal to come to terms with reality, call it silly, but too bad.  For now, they're Ralph and Louie.

I went in to the plastic surgeon and told him that mentally I was not ready for him to keep enlarging Ralph while just waiting for Louie to get completely well (or explode, or whatever.)  Because of the previous radiation, he remains convinced that we will be going ahead with the latissimus dorsi (sp?) procedure on that side, and I think he's right.  It's one thing to be a little different, but Louie's more of a rock than he ought to be, and not in the supportive way one usually uses the term "rock."

Doctor D. gave me "off" until the end of the month to be ready to make the next moves, which are: Under minimal anesthesia, in a brief procedure he will remove Louie's expander, and then wait for the area to heal.  During this time he will (very) gradually expand Ralph to a "final" desired size.

Then, (and hopefully in just one surgery,) he will do the new reconstruction for Louie involving my back muscle, and also put in both permanent implants.  That's at least a 72-hour hospital stay - no fun but hopefully with an outcome everyone can live with.  It's a lot to digest but for now, one step at a time, like I said.

In the meantime, we have also met with Dr. McIntosh (breast surgeon) who gave me the results of the Oncotype test.  My score is 8, which she says is very good and to her indicates no chemo, just Tamoxifen or whatever the appropriate thing is for my age/hormone count (something like that.)  She said this unequivocally and (I felt) without fear of my being told something different by the oncologist.  Dr. M. also told me to come back in a month, reiterated that she definitely wasn't going after more lymph nodes (there apparently having been recent studies showing she was right, and it isn't necessary or useful) and gave me the words to tell Dr. D'Amico that I needed a couple of mental health weeks.  If you need her, and I hope you don't, ever, you should use her.  She is awesome.

I called Dr. Ligresti's (oncologist) office to see if they had the test results and when I should come in to talk. She had just returned from being away and was completely "snowed under" in paperwork.  Her receptionist asked if I could call back next week to make an appointment.  She said they had also received the results and, when I said "looks like I should be happy, right?"  confirmed that this was "good" news.  (Here it should be noted that ordinarily receptionists for my doctors do NOT say anything like that.  I'm pretty sure they're not allowed to because, well, nobody wants to get sued for their employee giving out information that later turns out to be inaccurate.)   And these people are very professional.  So, I distill from this that the woman has seen a lot of these results and felt very safe in saying what she said.  And that's what I'm going with until I hear otherwise. 

Meanwhile I've been back at work on a "gentle" basis.  Alex, for one, is relieved that I'm driving again but Alex, (and Ari, and Andrew, and Jackie, and Daddy, and above all, Rod) - you have been and continue to be my champions.)  I love my family, I love my friends, and I love my job.  I just can't seem to "feel" it or "live" it or express it and it's frustrating as all get-out.

Tonight I'm going to lead services with my friend Evelyn, and although I'm completely prepared (we've been doing this annually for going on ten years I think) I'm nervous and a little bit excited.  And now I'm hungry too so I have to stop writing.  Besides, you all have been patient enough already:)

You're Going to Need to Get Yourself a Sharpie

A brief report from Monday's Jekyll/Hyde-like visit: the doctor removed the right-hand drain (yay!) but then took a look at the left surgical site and said I had an infection and that if the strong antibiotic (Cipro) he was about to prescribe did not start knocking it back in 24 hours, then I was going directly to the hospital for intravenous antibiotic "cocktails" and if that didn't work he was going to surgically remove the expander from the left side. (He feels strongly that this is all the result of the radiation I had four years ago, and that in all probability I will need a different kind of surgery for a good final outcome - involving using a muscle from the back of my left shoulder.)

He drew an outline around the infected area with a blue marker and said that if the redness went outside the marked lines within 24 hours, I should come back to see him, with a bag packed for the hospital.

I managed to fit in all 3 doses of my first day's worth of medication between the time I got home (about 7:30 p.m.) and bedtime. (And it was fine, for all you doctors/pharmacy experts, etc.) The redness started to abate, almost imperceptibly but for sure, and a little hope sprung up. Poor Rod; from the time I went to bed that night through the next day, every time he turned around I was lifting up or pulling down my shirt and asking him if it looked "any better." (Yes, some of that ole' magic is gone for the time being.)

Today was the go/no go doctor visit. He took out the other drain (said he was pretty sure it had done all it was going to do) and pronounced the infection beaten back enough to allow me to leave on Saturday with Rod and the boys for our annual trip to the Cape. I am going to keep up with the antibiotic for an extra week, just to be on the safe side.

I have been ordered to limit my upper body activity to prevent the formation of more fluid (now that it has no easy escape route.) And, the doctor re-drew the blue lines around the infected area. He further instructed me (Rod) to draw the lines each time before a shower and draw them again after every shower. If anything should start to redden where it was not before, we are to call his office, get in the car, and drive back to NJ, directly to the hospital.

It was then that he said, "You're going to need to get yourself a Sharpie." If I had not ridden such an interminably long emotional roller coaster these past few weeks, I would have laughed (as possibly a few of you are doing already.)

My Sharpie marker collection at work is carefully guarded by my aides - a hot commodity for anyone who wants "real" color instead of the washable markers we keep in the classrooms - and a huge inside joke, I'm sure (okay, so maybe not so inside.) I have tended it as one does a garden - making sure all the caps are on tightly, adding to the collection over the past years as I find new colors available (and on sale,) keeping them organized in special sectioned-off containers, weeding out the ones past their prime to make space for the strong - adding this year hot pink, mint green, powder blue, a peachy color, and a lovely lilac.

If I wanted to make life more interesting, I guess I (Rod) could re-ink my "infection corral" lines every day in a different color. But you know what? Life has has been interesting enough around here lately.

Instead, maybe we're better off with some un-interesting time sitting under trees by the lake. Add clam chowder, perhaps a lobster dinner, the penny candy store, several lightweight novels, some study I've been too keyed up (or dragged down) to enjoy, falling asleep (sleeping!) to the sound of the lake's gentle "waves" lapping up against the shore, visits with my dad and my brothers and their families..........sounds like a plan.

If You Can't Say Something Nice

How's the rest of that joke go? "Then, sit next to me."

Since there doesn't feel like there's much 'nice' to say, I have been adhering to the more traditional end of that line, which is not to say anything at all. The final pathology reports came back in on the lymph nodes, and there is, on a much closer inspection than I'm sure was possible even 5 years ago, a bit (piece? glob? atom? a centimeter) of cancer in one node. So the reports went to the oncologist and she has submitted that the samples be onco-type (sp?) tested, I guess to determine a course of treatment. She asked me why Dr. McIntosh didn't schedule another surgery to take a few more nodes, and I said I was told she didn't think it necessary.

So, Dr. Ligresti will call Dr. McIntosh (they are on first-name basis so Louise will call Merle) and discuss this. I feel grateful that the two of them are "teaming up" on my behalf, honest I do. I'd just rather it not be this way. (Dr. Ligresti's first words to me when she called after receiving my report from the hospital were "Why can't you just be boring?") And, after I grilled her about chemotherapy (how long does it take, do you still get really sick, how long until your hair falls out - all questions that nobody can possibly know the answer to in my particular situation because we haven't even GOTTEN to that point yet) she had SO much patience, listened, and said, "Stop talking as if you're definitely having chemo. We don't know that yet."

And, she laughed (sympathetically, not insultingly) through my justification of how I can't have my hair fall out while we are still having prospective members visit the synagogue because really, who wants to look scary to the young children you'd like to attend your school? Any other sane and busy doctor would have simply said "Let's discuss this later." But not this lady. She says I shouldn't worry because by the time we have to make those decisions it will take a few weeks to lose hair and we should be past that prospective member timing. This, my friends, is a mensch.

And, three weeks to the day of my surgery, I still have both of my drains in. Yes, they are still there, and they are still draining, and they still get stuck on everything, and I have lost all interest in keeping track of the totals because it feels like they're never going to go down enough to make them come out. So Rod is recording the 24 hour amounts for me, along with everything else he is doing.

Here's the straw/camel's back scenario: Last Friday morning I called in my drainage numbers to the plastic surgeon's office, as they had asked me to do every day, and the nurse (Pat) said they sounded low enough for us to come on over at 2 and she'd "get those drains out." So we haul to Englewood, she takes a look at the collection bulbs and basically tells me she can't take them out because there's still too much. I joke that at least I'd better get a write-up in a medical journal for this, and she tells me that there was someone with drains for 7 weeks once, but, not to worry, that one had "issues." Seriously?

While I'm there, I calmly and reasonably mention that since it's been almost 3 weeks since the surgery, the Valium I hadn't wanted but that they had insisted I take to relax the muscles had run out and could they prescribe more. No, she says, "I can't do that. Try a glass of wine." I am not a doctor but I'm pretty sure this is not a very professional response. I don't even ask why. (Maybe at that point I look like a Valium addict? What does a Valium addict look like?) Back in hot car, 40 minute drive back to our neck of the woods, and I have HAD IT.

So I called Dr. McIntosh's nurse-practitioner's voicemail, left a completely honest summary of the situation, and not five minutes later she calls my cell and says "Hi, it's Pat. What's the number of your pharmacy?" This is who we call Angel Pat. I can't even come up with a suitable moniker for the other Pat. I'm sure she's a good person, really.

I don't care any more. Frankly, if I thought I could write down that no fluid drained for 3 days in a row and get away with it and then they'd take the damn things out........... (No, I wouldn't. I'm depressed, but I'm not an idiot. If the fluid needs to get out, it needs to get out.)

Here's the thing. I'm worried that something BIG and WRONG (and in my wildest most horrible imagination means another surgery of some sort, and soon) is causing the left side to not be dropping off as fast as the right is, although Rod assures me that the difference between the two is not that great. But, it will be enough to make a determination about whether or not one (or both - haha) could be removed.

Our family's annual trip to Cape Cod is scheduled for next week, and if I still have tubes runnin' out of me, I'm not going. (Because of Andrew's work schedule he is going up a few days later, so I might salvage part of the week if the powers above see fit to have the drains removed in between when the rest of the family goes and when Andrew goes.) So, between the worry that there's really something wrong on the left and the worry that by Friday (that will be going on FOUR weeks since the surgery) I will still have drains, that's a whole lot 'o worry.

Today at 6 we have another appointment with the plastic surgeon to survey the landscape in question and to hold our breath as Rod reads off the last 3 days' worth of 24-hour totals from the drains.

Yesterday morning, Rod made me get up, get washed, get dressed, get HUMAN, and as I sat in all my human-ness in my chair, the doorbell rings (Sunday morning? huh?) and in walks one half (his "better half" being in Europe for a while) of our dearest and unfortunately no longer geographically nearest friends. Garry Karner (who many think is Rod's brother, and might as well be, as close as we are despite the miles between us) flew from Houston for just a day, just to visit me (and Rod kept the secret.) And as much as I love you all and I really don't want visitors because I'm too unsettled in my own skin right now, he just sat and talked with Rod and the boys and we joked and watched TV and went to Kohl's (yes, Elyssa) and sat some more and it was like old times - old, normal, nobody is sick and cranky and uncomfortable, times.

Never say Never

Arent we always reminding our children not to exaggerate just to make a point and then we catch ourselves saying "I've told you a million times" to do/not do something or other? Well, years ago I started using the word "countless" instead. Now there's one less thing I can be accused of being inconsistent about!

Why this is relevant at all to the matter at hand: of all the prescriptions we had to load up on for post-operative care, the one I had steadfastly avoided was the Percocet (oxycodone) - whatever, it's a narcotic painkiller and I was told that if I could manage without it my digestive system would be a lot better off, plus, hello, it's a narcotic. I put away in a drawer figuratively marked "never." So in the meantime I gave in to the Valium and made do with extra strength Tylenol (no aspirin-related products for 2 weeks on either side of the surgery, so no Advil (which is looking real good right now.)

Sometime in the middle of the night on Saturday I woke up in so much pain (from something related to the giant ace bandage, I figure) that I dug through the drawer I had hidden it in, and took a Percocet. And you know what? The damn thing worked. It worked so well that I stayed awake for a while ON PURPOSE just to enjoy the painlessness. But still I reserved it for nighttime.

Yesterday morning I was in so much pain that I called the dr's service and reached Pat. The first thing she said? Did you tighten the bandage any more than when I put it on you? I told her not really, (ok, so I might have just a little, using the "more is better" theory.) And no, apparently I don't know any better by now. At any rate, she said to take the Valium and Percocet together, every 6 hours. Period. Got it. And it's (mostly) working. Not feeling like a walking Zombie or anything, just a little (more) tired after a couple of hours.

Today at 1:15 there's an appt with the breast surgeon and then we go down and across the street (literally) to the plastic surgeon. I don't even know what to hope for any more. If I could end the day with at least one fewer attachment and one more reassurance from an actual doctor that a lot of this stuff is normal and will get better, that would be awesome.

I desperately want to "turn the corner" everyone keeps talking about. Where is it?

It Could Always be Worse

Deep in my heart, I know this is true. That being said.......

Went in on Wednesday for another follow-up with the plastic surgeon. He was very happy with my progress (and the results of his work) and told me to come back on Monday. I know he didn't PROMISE the drains would come out but more than 2 weeks with drains? Seriously? At this point I'm resigned to doing whatever I have to do, but I'm not sure what else I can do. I rest, I take my antibiotic, I'm trying to be "active" and "take it easy" at the same time.

Yesterday was our 26th anniversary, and it is going to have to be a delayed celebration, for sure. Everyone is tired and on edge and we need a collective vacation. I just hope we can go to the Cape in a little over 2 weeks.

This morning, some kind of swelling appeared on the left side and when I called the doctor's office I got a recording that they don't "take calls" until noon through 4 on Fridays. So I freaked out for a bit, called Rod, and then called the doctor again at noon-oh-5....and got a message saying the office is out to lunch and to call back after 2. And the answering service wants to know "is this an emergency?" (At the risk of sounding like the classic Jewish mother-light bulb joke, "don't worry about me; I'll just sit in the dark,) I hemmed and hawed but in the end gave the poor message service guy the whole story and left it to him to pass the information along to the appropriate person(s).

You can't even imagine what was going on here by then (or maybe you can; either way I took a Valium) and Rod charged home on his white horse and announced that we were going down there, NOW. ("Now" is 30 minutes with no traffic on Route 4; so, almost always 40 minutes.)

In the meantime the office called and told us to come right in. When the nurse took a look she thought at first that the tissue expander may have misplaced itself somehow. She left the exam room to call the doctor and left me in tears at the prospect of a surgery on Monday to correct this problem. Given the choice of crying for the 15 minutes she was gone or trying to take a nap, the nap won (been getting my best sleep in the afternoons.)

Pat returned, did some more poking, and announced that the expander seems to still be correctly placed and that the swelling is most likely fluid. So now I have a kind of giant Ace bandage that wraps around to compress the area and I'm keeping it as tight as I can and still breathe. And I'm not looking at it again until tomorrow morning when, if I could catch a teeny break, the swelling will have dissipated a little. I just want to be headed in the right direction. Again? For a change?

There are SO MANY worse things in life than this. But just for a few minutes here and there for the past couple of days, I haven't stopped to smell the roses or counted my blessings even though I know the former are eminently fragrant and the latter so blessedly innumerable. My rose-colored glasses are out for repair.

Rest is Hard Work

Yesterday we went to the plastic surgeon's office for a follow up visit, and saw his nurse, Pat. (Actually the nurses for both surgeons are named Pat - makes it easy to remember.)

She removed the novocaine pump and its tubing, and all of the tape over the incisions. I didn't watch. (And frankly, although the process had been described to me as "completely painless," it was not.) She checked out the progress of the healing, and prescribed some kind of cream to "encourage the capillary action" on a small spot of skin.

Unfortunately, I am not yet divested of the two drains - the tubes that pull out the fluid that accumulates at the surgical sites. They are sewn in place somewhere on each side under my arm (again, not looking, so don't know exact location, and don't really care) and end in a kind of squeezy bulb that is a collection point. Twice a day you empty the bulb and measure what was in there, then write it down. The key to getting rid of the damn things is to be able to empty less than a total of 20 cc of fluid from each bulb over a 24-hour time period. And you can sort of help that along by not doing much with your upper body to cause more fluid to be produced. Pat claims that maybe when we go back next Wednesday I will achieve my goal of unfettered-ness. (To everyone I know who had to deal with more than two drains, you are seriously my heroes.)

Although I have been told that many women go out and about with their drain bulbs neatly tucked in a fanny pack, and therefore presumably unnoticeable, I am apparently not one of them; besides, it's about 90 degrees outside and I have no desire to purposely get that hot and sweaty when taking a shower is such a procedure. Plus, no deodorants, creams, powders, or other such things are allowed for the foreseeable future.

Other than the drains, the only outwardly visible remnants of my time at the hospital are several horrifying-looking bruises on my arm and hand where the IV was and where a well-meaning but badly aiming nurse named Ed tried to move the IV to when my hand got unbearably sore, round about day 2.

Every so often, I think about what has happened to my body, and the complete irreversibility of it is still very surreal and a little (ok, a lot) depressing, despite the fact that it was really a necessary move. (And, yes, I know deep down that I'm luckier than many.) So I stop thinking about it. Seems the best option for now.

There are a few pathology reports that we are still waiting for, and when those arrive then we'll visit the oncologist and see what she advises.

I know my job is to try to relax and heal, which is easier said than done! Many, many thanks to everyone for the food, the flowers, and the lovely emails, cards, and Facebook messages.

This is the first time in about 18 years that we have not been on Cape Cod for the July 4th week. We'll go later in the month when I've got more of this healing thing done - but I still won't be able to help with the driving, packing and carrying, unpacking, bed making, etc.

Looks like one of those silver linings...........

News from the front lines

Actually, I have no idea what the scars are going to look like. For now, I'm avoiding mirrors.
I am, however, home. And the initial reports on the sentinel node biopsy are all clear.

There is some "discomfort" but right now it's almost all in my left shoulder/upper arm area. My guess is that during the surgery they move whatever they need to out of their way and hold it there for a while. The fact that this particular pain showed up almost exactly 24 hours after the surgery is, I feel, not a coincidence and is therefore a muscle injury of some kind. So I'm icing it.

Got my extra strength Tylenol (no advil allowed) my antibiotics and my drain maintenance to keep track of. And then the instructions to sit up straight, walk around a little, practice deep breathing with this Machiavellian plastic contraption,and not lift anything heavier than a teacup or a telephone. (plastic surgeon's words exactly - I couldn't have made that one up.)

Rod helped me with the biggest adventure of the last 24 hours - taking a shower - yes, with all the drains and novocaine tubes still attached Thanks to Elyssa for the suggestion on how to make it a little easier. That worked.

And a HUGE thank you with a hug (when I'm able) to Jackie, who arrived in the house, assessed the situation and started Andrew and Ari into action. In no time at all everyone had a plate of the delicious food Iris had brought over, clean laundry that had mysteriously remained unsorted got sorted and put away, leftovers were stowed in the fridge (thanks to Elyssa's earlier space-making rearranging,) and by the time Rod rolled in at 7:30 all he had to do was eat something.

Hospital details (some) coming when I can sort out what's worth sharing and what's simply whiny. I will say that Englewood Hospital is a world-class medical facility and their staff is, on the whole, very kind and caring. They want you to heal, learn to take care of yourself, and get out of there.

Any misbegotten fantasy about my hospital stay - getting rest, catching up on some reading, studying; in short, any self-centered activity I thought I would have the luxury of doing while "laid up" was simply that, a fantasy. I imagine many of you out there shaking your heads while saying "well, duh!"

Thank you to all for your well wishes, and I am especially grateful that for now they are coming in emails, text messages, and Facebook messages. I am not really up to phone calls or visits from anyone other than a very small group.

Tomorrow we will go to see the plastic surgeon and if the drains are finished then he'll undo those stitches and pull them out. I'm hoping that will trigger a better mental picture for me. We are also waiting to hear the final pathology reports on the sentinel node biopsy and the cancerous tissue they removed. Good news in that department, i'm sure, will make a big difference.

Rod has been most amazing, starting with the hundreds of details he's been managing from the beginning, including his charging around the hospital yesterday afternoon trying to get me discharged, continuing through the shower scene this morning.........Ari not only unpacked and put away all my clothes from the bag when I got home, but sorted a whole basket of clean laundry. He now serves as all-around go-fer and call screener/bouncer. (for all who know him, the picture of my 5'7" beanpole as bouncing anyone is kind of funny, no?) That's why he's a phone bouncer:)

Andrew does what Jackie (gently suggests) says, as does Alex. The whole family is full of caring, concern and will come if I call. (which I'm trying not to do. Gotta do some walking around.)

You know how you start the week on Monday and then all of a sudden it's almost Friday and you wonder where the time went? This week, I'm not wondering at all, and I'm glad this particular leg of the voyage is over.

Separating the Saucer Section(s)

(Hey, if it made me smile, then it's going as today's blog entry title. For those who have never watched Star Trek, just wait, there's going to be a movie musical reference in a bit.)

It's 6 a.m. I've been up since 5 and slept somewhere from 11 p.m. to 1 a.m., and then 2:30 a.m. to 5. Washed about a gazillion times with the special soap (die germs!) and am pretty much good to go when we're actually leaving, which is 6:30.

I've got my "Rod call/text list" ready, my "stay at the hospital" bag ready, my "stuff Rod will have to carry all morning until I go into surgery" (aka the "distraction") bag ready (ipad, iphone, headseat, charger, sudoku book, Hebrew grammar workbook pages, glasses........)

Am I ready? Eh. As I'll ever be, I guess. Got prescription lidocaine cream slathered all up and down my left arm (for the notorious IV insertion ordeal) which means I've got plastic wrap covering me from elbow to fingers. (If you deprive it of oxygen, it works better. To hold it all together, I put a latex glove on my left hand and threw on one of Rod's work shirts (pink plaid.) So now I'm really warm but not worrying about that particular pain will totally be worth it. And I look kind of funny.

The other place I've put the cream is where (I'm guessing) the four injections will go for the sentinel node tracer material. The injections have to be done about an hour before the surgery because.... well, I'm a little fuzzy on the details but I know it has something to do with how Dr. McIntosh finds the sentinel node when she gets into surgery. This area, too, is covered in plastic wrap, held in place by my camisole. But since that will have to be wiped off by Dr. D'Amico when he draws on me at about 7:10, I hope it has time to get to work and stays in effect until 9.

Yesterday on Facebook I posted a status that said I was determined to enjoy my birthday by using Scarlett O'Hara's famous line, "Tomorrow is another day." Then late last night I was reading my "Ten Minutes of Torah" that I get via email each day. The portion this week is about how daughters of a father who has died without male heirs are given their inheritance by God, and the rabbi who is writing compares the whole situation to the O'Hara girls inheriting Tara. Coincidence? Probably.

But in one my favorite all-time movies, "Hello Dolly", Barbara Streisand asks her dead husband for a sign that she should marry Horace VanDergelder and Horace says something like, "Money is like manure. It's no good unless it's spread around helping young things to grow." And of course, that was the exact line her husband has been fond of saying. So she had her sign.

Is "Gone With the Wind" my sign? I kinda hope not, since it is not one of those movies I would watch over and over.

But if the doctors have got my front today, I know you all have got my back.

Love,
Rebecca

Thinking and thinking

I had two kind of (maybe) oddball realizations this week.

First, about the pink: I've always liked pink, but within the past couple of weeks I've gone kind of pink-aholic. When I chose a color of polish for my pre-surgery pedicure - (tastefully) hot pink. My new summer bag - big time pink flowers. I now own a pink mouse for my laptop, a pink notebook cover, pink shoes, pink nightgowns, a pink blog page, a pink robe, pink highlighter, pink heart-shaped Post-Its, pink paper clips, not to mention the four pink bracelets I am wearing. (There were 3, but darling Joan & Iris gifted me with a beautiful pink crystal bracelet with beads spelling out "faith" and a breast cancer ribbon and "hope" charm.)

Do I really love pink that much because people compliment me when I'm wearing it? Maybe. (Doesn't explain the office supplies, though.) Am I buying pink because it's the quintessential "girlie" color and I'm needing to compensate for what feels like the imminent loss of a feature that makes me a "girl?" Hmmmmm...

I'd like to not dwell on that, but trying to ignore the fact that this is a loss is like trying to ignore the fact that somewhere in my "house" is one of those trick buckets of water balanced on a partially open door. Eventually, and when I don't expect it, something is going to go 'splat' on me and I'd like to have an umbrella (and no cracks about a smile being my umbrella - I hear some of you thinking.) Or a poncho. Or a hat. Preferably a pink hat.

Second, there's this rather odd feeling that the closer I get to Monday, the more surreal this whole business seems. As I left my last (for a while) wonderfully soothing chiropractor appointment this afternoon, it just came upon me. I'm torn between wanting it to last (it's kind of nice there in "it's-not-really-happening-land) and wanting to be fully present in my present, so to speak. I don't know if this happens to others in my situation, but it's a very weird thing to be experiencing.

Also in the news this week: Dr. McIntosh's office called my cell at 8 a.m. Wednesday to say that the insurance company had approved the plastic surgeon and would cover his part of the surgery. YAY! And, I had a more pleasant conversation with another nurse from the insurance company yesterday. I was extremely polite, and I could tell she was trying really hard to be helpful. She did not attempt to "educate" me about anything (said I sounded like I had good support around me and was as well prepared as I could be,) and said she'd check in with me next Wednesday or Thursday to see how I was doing.

But first, I've got my dad coming in tomorrow and a birthday to celebrate on Sunday. Good thing the pre-surgery ban on food and drink doesn't start until midnight the night before!

Trying a Patient's Patience

Here it is Father's Day, June 20. One week into the "no Advil" and one day until the special soap begins:) Three more chiropractor appointments (chances to get my back so I can sleep on it comfortably.) Six days 'til my dad gets here.

Rod and I called our fathers, and when I spoke to my dad the conversation (as it inevitably does) turned to the surgery - with me completely ranting about an encounter with the health insurance company, and that led me to think more about my patience (or recent noticeable lack thereof.)

Friday, about 5:45 p.m.: I get a call from a woman who says she is calling to "help" me with my health insurance. She doesn't identify herself in any other way. So far, she sounds a lot like the people who call to "help" me with my mortgage rate. And she asked for "Becky," the nickname that NOBODY who knows anything about me would EVER call me; certainly not what someone who has never met me would call me. Who starts with a nickname just to get chummy? I'll tell you who - people who call Rod and ask for Tom because his full first name is Thomas. Guess what? They never get to talk to him.

So, here I am, driving with Ari to the synagogue for a barbecue and family service, and already this woman has me wound up. But, I agree to speak with her and after she asks me for my birthday and zip code, I ask(nicely) to know exactly which company she is calling from. Satisfied with her answer, I proceed to have to explain to HER what my medical history is and how I got to my current situation.

Turns out she is an oncology nurse who is calling to "help" me - and that word is in quotes yet again because so far, (and I'm telling you now that by the time we hung up,) that word has NO place in a description of our conversation. Through all the years since 2006, every person working in oncology has been wonderful - understanding and patient. And the first thing they all say is either "How are you doing?" or "Is there anything I can help you with?"

Somehow she managed to tell me that a) my hospital is not in-network (untrue - any rube with an internet connection could look that up easily and find out that my hospital is, indeed, in-network) and b) that her understanding of the gap exception rule is that it is only applicable if there is no suitable doctor within a 30-mile radius. (Visions of a pile of disappearing cash and/or a doctor who says at the last minute that he can't do the surgery arise in my head.) And, she wants to know who Rod spoke with to get his information from.

Now we've arrived at the synagogue, I'm inwardly furious with this woman for not only NOT helping, but starting a conversation about something that would seem to be decidely not her purview and putting me in such a tizzy that can only be described as "a state." I saw Rod had already arrived and handed him the phone, but that evening it was all I could think about, even through speaking with some nice prospective members and the lovely outdoor service.

Her last words to me were "Why don't you call me next week? I'd like to educate you a little about chemotherapy." If we had been face to face, she should have stepped away; that's how angry I was.

My last words to her were "I have an oncologist, and we won't know what will happen with that until after we have all the testing done after the surgery." This is better than my evil (and fortunately for both of us, silent) twin's response: "Educate? Really? I'm sorry, is there no other place that would let you work for them? Because you're just adding to the stereotype of insensitive, ignorant health insurance employees." Maybe even with my actual response I might have sounded kind of snotty, but if she was calling to be my case manager and help me through some of this, she should have been a little more sensitive, especially for a first call. And I resented that it felt like she hadn't actually been listening to me. I spent all that time explaining my medical history (using the appropriate vocabulary even)and she still spoke to me like she knew everything and I knew nothing. The word "imperious" comes to mind.

After I replayed the conversation in my head a few times I thought that maybe I could have been more patient with her. (After all, she was, in theory, trying to assist me. She was just really terrible at it. And I guess she had no idea that when I said I only had 10 minutes, I really only had 10 minutes.)

Frankly, I could be a lot more patient with everyone at this point. For the past few weeks I have been impatient with family, co-workers, friends, and the world in general. I don't even know if my situation gives me permission to be that way, but I appreciate all of you putting up with me.

(You know it's bad when I've started joking that the anesthesia will at least insure I get 3 to 4 hours of uninterrupted sleep!)

It will be better soon.

Sign Here, Initial There

Just got home from visiting both surgeons' offices and signing too many forms to count. Plus I had my pre-admission bloodwork and EKG. If both of those results are as they should be, I guess I'm cleared for surgery.

We didn't see the plastic surgeon himself today, just his office manager who handles all the forms and gave me my pre- (special soap) and post-operative prescriptions. Valium to control muscle spasms to aid in healing, an antibiotic to ward off infection, a heavy-duty painkiller "just in case," and something for nausea following anesthesia (also, "just in case".) I asked her how it was coming with the insurance company, and she said "they're" working on it. (Who is "they?" I don't know.)

We did, however, meet with the breast surgeon personally, and she was all about making sure we knew what was going to happen. She even drew us one of her classic diagrams, some of which I save the way Sardi's collects caricatures of famous people on their walls - except these are all sketches of breasts and procedures to be done to them. (On the other hand, I've never come off looking good in caricatures, so maybe this is better.) She told me that maybe 3 1/2 hours for the surgery - not too bad, right?

The tricky timing bit is that Dr. D'Amico wants me at his office that morning to draw his reconstruction guidelines, but I'm supposed to be at the hospital at 7 a.m., and he doesn't want to do this part at 6:30, and he doesn't want to come to the hospital to do it. So Dr. McIntosh said I don't have to be at the hospital until 7:30, and Dr. D'Amico is expecting me at 7:10. Either way, it's early, but it's okay because I figure the earlier we get all this stuff over with, the better the chance my surgery could start on time, and we can get this thing over with. That would be loverly.

She gave me a prescription for a numbing cream so that I can slather it all over where I think the IV will be - historically they have a tough time getting the IV in (if the nurse/phlebotomy person is not so good at it, it hurts while it's being inserted) and so it usually ends up on the back of my hand, which hurts going in AND anytime it moves AND creates a huge bruise which lasts for a couple of weeks.

In addition, I try to put the cream in the general area where the injections will go for the sentinel node biopsy. About an hour before the surgery the radiology department injects a radioactive substance in four spots that (I think) act as a tracer for the surgeon to find which node (and hopefully it will be only one) to take out to send up to the lab right away. This also means that once I get checked in and change and have my IV put in, they have to take me over to the other building (thankfully, connected to the main building) for the injections, and then back to the surgery area.

So I travel in a wheelchair in my hospital gown and little hospital-issued socks (not warm at all,) with Rod, all my stuff, all his stuff, a blanket to cover my legs, the IV hanging, and an orderly pushing me along. Having gone through this part back in 2006, I can look back and think it was kind of funny. But, I wish everything could happen in the same spot. This time around, I'm going to ask to wear my own robe and slippers at least! (If they're piloting me around the hospital, through the lobby and all the hallways, they can't really argue that my robe isn't sterile, right?)

I had left my nails with polish on so that I could show both doctors what I was talking about - and got official, in-person permission to have "nice" nails for the big event. Why this is so incredibly important to me, I'm not sure, but I think it has something to do with control, not how pretty I want to look in the hospital. As with the shampoo as opposed to the antibacterial soap, it's about what I can do MY way, in the face of all of the "have to" things that make the surgery more real.

Meanwhile, a few nights ago I dreamed that I was having my leg amputated, and even though I remember being upset about it, I did not wake up shaking with my heart racing. Does this mean I'm growing to accept my own decision to have body parts "amputated?" I hope so. With all the doctors and nurses trying to make sure I have no questions, so far no one has offered some kind of loss counseling.

On the more pleasant side of things, last Saturday night all of us went to Dave and Buster's to play, and had dinner at a place called Fire and Ice, which was new to us, but a really neat and pretty tasty experience, and not as expensive as I had expected.

While we were at the mall, Rod suggested I "check" at the Apple store to see if they had the iPads in stock there. As it turns out, they had the exact one I had ordered (which was coming, in theory, very close to the end of the month.) He further suggested I find out if I could cancel the order, and just get one then and there. Yes, and yes - and it's VERY cool:) Rod even gave me my birthday present of a year's 3G service right then and there, over two weeks before my birthday! Now, there's a great guy - but you knew that already.

This morning Dr. McIntosh's nurse Pat asked me how I was doing and I started to tear up a bit, but I said that eventually I was going to be fine, right? And she said "right." To loosely quote a friend of a friend, I thought I was used to the idea that not everything I walk on will be smooth, but some days I feel like this road is a long and bumpy one.

Things to Look Back on - and Forward To

The week went by in a blur of - hmmm, I'd have to look at a calendar to list everything. And a lot of it was fun at the time, especially the shopping therapy at Pearl Paint (thanks to Elyssa - what a wonderful place!) and then on to Kohl's to find the perfect button-up-the-front pink flowered shirt for coming home from the hospital.

A very cool and rare sighting from home - my dad is coming to visit the Saturday before the surgery, and my sister-in-law and niece are coming with him to visit with her sister, who lives here in Oakland, right near us. They're all coming on the train, and going home that Tuesday. I joked with Dad that he was just staying long enough to be sure I had survived, and he laughed and said "that's right!" Those who don't know us too well would be horrified, but that's the way we talk. Underneath we're very soft and squishy sentimental folk.

Also during last week my birthday present to myself was ordered - an iPad. Although I had hoped it would come sooner, God's cosmic joke (in the form of Apple's shipping department) has dictated that it probably won't arrive until closer to my actual birthday, a far-too-close-for-comfort 4 days before the surgery. Plus, being a "want what I want when I want it" kind of gal living in an age of instant gratification..............well, you get the drift.

Sometime midweek each surgeon's office (because I couldn't remember which one's paperwork said "no nail polish" and needed someone to tell me why not) called to tell me that yes, it is ok to wear nail polish, as long as there are no acrylics underneath. I have gels, thanks to Jane(!) so it turns out a nice manicure before the surgery will at least be something pleasant to do to get ready, along with the special antibacterial soap washing and no eating or drinking (not even water) after midnight the night before.

The synagogue itself is pretty quiet right now, which is great, since my own little end of the hallway is busy with movement - books and papers going everywhere while we count what we have and decide what we need. Thank goodness Rachel is there with me. We made a list of all the work she is going to do over the summer, with or without me there, and she filled a whole lined pad! Granted, it was one of those little half-sized ones, but still, I never realized how much we do to get really, really ready.

The paradox (or is it a dichotomy?) of the calendar for me is that while I am just desperately impatient for Ari to be done with school, live through his finals, and just be able to stop struggling with things for a while, I am pretty patient about waiting for the surgery. There is so much I want to get done first!

This morning Rod & I drove down to West Orange for a one of our dance "family" child's Bat Mitzvah (Hi Ann & Stan - D. was great.) It was Conservative, so it started at 9 a.m. but she didn't start participating for real until around 11 a.m. We got there about 10:30 and it was different from what we're used to, but the same enough that we could make comparisons to our own services along the way. As we arrived they were into the 2nd or 3rd Torah reading, and I automatically started translating in my head. I actually could do quite a bit; Then they went on to a section with a bunch of names and numbers and parts of animals (all kinds of organs and such) because they were talking about sacrifice, and I lost track, but I had it for a while!

We sat with some of our other friends - it was good to hug everyone, most of whom we last saw at New Year's. We ducked out before the service was over and were in the car by about 12:30. The trip home should have been a little over half an hour. Nope. Trailer and its truck turned over in the middle of Route 287 and we didn't get home until around 2 p.m. Oy.

So we had plenty of time to check in with Ari, who Alex had driven to the youth group election/Chinese Food/Laser Tag end of year blowout. He was running, with a friend, to be the liaison to the junior youth group kids, and the boys didn't win. I felt bad because I knew he would have done a good job, and now there are no boys, er, young men, on the board at all. The girls who won are terrific, and I like them a lot, but as I take off my virtual synagogue hat and put on my virtual mom hat, I just felt bad. Probably he doesn't, and I'm sure it'll all be fine.

This afternoon we're going to meet Ari at the synagogue to pick him up from his youth group mall fun, then turn back around and go to the mall for Alex's "you had an awesome sophomore year in college" Dave and Buster's family outing.

Andrew will come over after he's done at work and join us for dinner and some gaming, and with any luck I'm going to go back to concentrating on NOT concentrating on anything for a few hours except enjoying being with Rod and the boys.

Q&A (the Tip of that Iceberg)

Monday I started to tackle my "questions" list that I had composed over the weekend based on all the dreaded paperwork reading that Rod had done (I am so grateful.) It was easier to have him pass me things to sign - I didn't really have to read them closely. Rod gave me a summary of what each one contained, and he made it much less scary. And he guided me through making my list of questions. Once it was down on paper, also not quite so scary.

The beginning of the question answering - not so bad. Dr. McIntosh's nurse Pat was really helpful:

Do I have to be there at 7 a.m., really? no, we have time to scoot over to Dr. D'Amico's office first to get marked up for his part of the surgery, then check in at 8 a.m. Special radioactive injections for the sentinel node biopsy at 9, surgery at 10. (Just writing that made my heart go flippity-flop.)

What should I bring? Robe, slippers, warm socks (my necessity), toiletries, phone, charger (how modern are we?)

What about all the pre-testing that some of the paperwork is asking for? Nope. Just the two that I already booked for the 16th, bloodwork and a heart thing (I can never remember if it's EEG or EKG - it's just sticky things and a graph output of some kind.)

What about this washing exclusively with a special prescription soap for some days before? I'm trying to explain that my hair will be gross if I don't wash it with my shampoo and use conditioner. Not my hair, silly (she didn't say "silly" but I heard it) just my body. It's to try to kill as much bacteria as possible before the surgery. Duh.

Similarly, a nice call to Dr. D'Amico's office:

What about the second "follow-up" consultation, AND the special appointment with the nurse (who's only in on Tuesday and Thursday) to sign the paperwork? Already had the consultation, and not necessary. We can simply drop off the paperwork I signed after we do the hospital stuff on the 16th. (Dr. D'Amico's office is across the street from the hospital; he's the chief of plastic surgery there.) At the same time, I can pick up prescriptions for all the stuff I'll need right after the surgery, like valium (used to stop muscle spasms, not for my sanity) and the aforementioned special soap.

Note here that this simply dropping off stuff is a good thing. I try to stay out of the doctors' offices, and the hospital, as much as possible; although I know it doesn't actually change anything, it FEELS less awful. For the same reason, when I go for exams, I usually dress so that I don't have to take lots of time to change, put clothes in the teeny locker, etc. I spend a little less time there and the act of removing tons of my own clothes to put on the the gown and robe is just mentally harder. So if Stacy and Clinton from "What Not to Wear" were to show up at one of these visits, they'd be properly horrified by gray sweat pants, Crocs, and a camisole top covered by my favorite zippy sweatshirt! Easy off, easy on, easy to get the heck out of there.

Monday I also started to try dealing with the insurance company on my own. By the time I had spoken to the 3rd department in a row, I had gotten nowhere fast and they had already denied the fee for the initial consultation. Plus, one of the papers I have to deliver on the 16th is something I signed saying we would "guarantee" that the doc receives his fee (somewhere over $35,00) no matter what happens with the insurance company. I'm sure everyone has dealt with things like this, and I'll bet you all have your own insurance horror stories, whether they be about property damage or your health, but boy oh boy this was quite the frustrating hour or so on the phone. (Can't imagine how that will show up on the cellular bill!)

The bottom line was that I needed to have Dr. D'Amico's office call the insurance co. to acquire something called "gap exceptions" for all their work, since there is technically a "gap" in the coverage that allows us to use an out-of-network doctor. (This gap thing is actually good news, believe it or not.)

Yesterday I spoke to Dr. D'Amico's wonderful manager, Marie, who has answered all my questions so far. (I'm not sure I've actually met any of his nurses yet?) She said "Please don't worry about this; we will take care of it. You have other things to think about."

All well and good - but before I said good-bye I told her that I hoped we would know more about this before I hand in my signed "I promise you will be paid all that money" form next week. We shall see.

The one thing both Pat and Marie said was, "keep writing down your questions and bring them in when you come next week." Nice change from the not-so-good old days when the doctor (usually a man) said "do this" and you did it, no questions asked, and you just worried. I feel like I'm eliminating some of the worry, and I appreciate that they want me to feel less anxious and are willing to take the time to help it happen.

Between my lists for work, my lists for home, and my lists for the surgery, I should just carry around a whole stock of Post-It notes. Oh, wait a minute......:-p

On a Technical Note...........

A few people who have become "followers" (sounds a little cult-ish to me, but if that's the terminology, then that's the terminology) have written to ask for the link again. So, I guess I missed that you have to give people a way to actually get notification that you have posted a new blog entry.

Ari muttered something to me about "RSS feeds" way back when I started, but I have no idea what he's talking about. In the meantime, I found a "widget" that presumably will do this. So, if you click on the right-hand side of the page in a very nicely decorated (again, not my choice but pre-made by the developer) box under the Followers box, you should be able to enter your email address and you will get a message when I write a new entry.

I have tested this, and it does seem to work, and most importantly, they emphasize that they DO NOT SEND an email unless I write a new entry. So I'm hoping this solves things for a few of you, I thank you again for reading, and if you have problems with this particular widget then let me know and I'll disable it and try to figure out something else.

See now, I have successfully taken my mind off breast cancer and surgery and chemotherapy for a whole 15 minutes or so. Nice!

A Long (but not bad) Day

I'm writing at 10:40 p.m. and it has been a long, long day.

Just returned from picking up Ari from the first night of the junior youth group camping trip that his senior youth group was programming for. Due to Ari's arm's-length (or, more accurately, ten-foot pole) relationship with six and eight-legged forms of life, we took him home for the night and will drop him back in the morning. That way, at least one of the teens running things will have had some rest!

This morning I met our cantor at a local hospital/rehab facility near my house to visit with a congregant, something I would like to be good at (if there is such a concept as being good at this.) As much as I keep thinking I should be completely freaking out about going to a hospital, what with my own impending visit and all, it was so nice to see her smile and I found out later she was really happy I had been there. I told her I would be back, and I will.

Then on to the synagogue to work with one of my adult students - we took out a Torah to read from, and as I carried it down the hall to the library, I realized that in addition to feeling the usual honor of carrying something precious, it felt kind of comforting to hug it to me.

Before I knew it, I was once again running late for my chiropractor appointment. (I have been going 3 times a week to see if the pain in my back could go away before the surgery happens and I have no other option for a sleeping position.)

And it was hot, and I was still wearing my "nice" top and skirt and shoes for the hospital visit - so off I went to drive the kids home from the high school. Then back to the house to get Ari ready to go over to the camping trip, and then back to the synagogue to help the youth groupers pack up their stuff into the cars (of which my minivan was one.)

Well, about an hour and a half later I stood in the dusty, hot campground parking lot, sweating like crazy (still in my skirt, etc.) after helping load all the sleeping bags, cases of water, toilet paper, tents, backpacks, lanterns, s'mores ingredients, etc. onto a truck. Then a quick wave good-bye to the kids and advisors (brave Stacey and Leah!) and gratefully back down the long winding hill to home.

After a no-holds-barred, who-cares-about-the-carbs plate of spaghetti, back to the campground (this time with Rod driving, fortunately) to get Ari.

Tomorrow Rod and I are really going to take a look at all that scary paperwork from the surgeons and make a list of questions for them, but that's tomorrow. I'm hoping that after finally getting into nice cool sheets in a nice air-conditioned bedroom and throwing back a few Advil, I'll have a decent night's sleep.