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?