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.