Hi Ho, Hi Ho, it's off to Dr. D. we go....

I remember Dr. D'Amico saying "Come back after the wedding" so I did.  I brought my dress with me, since he's always asking me to wear something slinky to take photos of.  Since I don't wear something slinky on a regular basis (unless you count the amazingly lightweight full length modal nightgowns I got from Kohl's a while back) this required bringing the dress to the appointment, and changing into it, and hoping the effort was worth it.  So this afternoon Rod and I showed up for my appointment complete with my mother-of-the-groom dress in a bag, and as a little surprise I put it on instead of the laughingly-named paper "gown" to wait for the good doctor. 

Totally worth the effort.  He called in not only his nurse, but someone he was training (for what, I don't know; she certainly didn't know much about breast cancer/treatment/reconstruction.) AND he asked for photos.  (Then all the girls in the office wanted to see it and where did I get it and their son is getting married and ooo it's so light and silky and how come THEY didn't find anything at Nordstrom's as nice as that?)

Then I disrobed and gave him my own inexpert opinion about why the scar on the right is dark and brown and wide while the scars on the left are thin and pink: since the temporary expansion that was done on the right was done sort of beyond what he knew he wanted (on purpose) not only did it stretch the skin gradually, but it also stretched the scar as it was healing.  And (she takes a bow) I was right.  As a matter of fact, he was kind of sorry that I hadn't left it to the trainee to try to explain :)  Which she couldn't have done anyway.  Hah.

I swear I am not becoming (or have I ever been, Sen. McCarthy) a plastic surgery addict.  HOWEVER, I will never want the aureola etc tattoo as long as the only thing that draws my eye is this brown line across what I'm supposed to make myself believe is a breast.

I have always known that the "soft tissue deficit" pockets which are actually kind of hollow places created by the original mastectomy, still exist to a certain extent.  But after the liposuction that gave him what he used to "transplant" fat was so very uncomfortable, to say the least, I had figured the hollows were here to stay, and I'd just have to live with them.  I knew a lot of that fat had, technically, died (hadn't latched on to a blood supply) and hadn't done its hollow-filling job very well. Today, after he said that scar revision was absolutely on the menu for a next step, he said I could store "coins for the toll booths" in those little pockets of nothing.  And then he convinced me to go through another (much smaller-scale) fat transplant procedure to try to correct this some more.  He showed me where he would take it from, and call me gullible, but I trust the man.  And I'm not-so-secretly relieved that he feels the hollows should go, if at all possible.

I'll tell you what else he wants to do, that I figured I'd just have to live with - the right mound (that's what we in the biz call reconstruction sites) sits a bit lower than the left one.  You'd never notice that, but I sure do.  It has something to do with the fact that the left implant has support from all that extra muscle from my back, and the right implant is just "regular" - so supported by one muscle and some skin.  (The downside of the left-hand radiation that caused the whole thing to go bad right from the get-go turned into the upside that the "back flap surgery" creates a better outcome.)  So, the left sits higher, and the right has, as he said, "settled."

He says that while he is doing the scar revision, it's time to lift the right a bit to match the left.  Now, who wouldn't want that?  I do!  I do!

He's off to Europe for a few weeks, and knowing him it could either be for a fab vacay or it could be to do free surgeries on children who need it - he does both.  He says we should try for after we get back from Cape Cod, and he's got the one employee who has been there since this whole odyssey started - his office manager Marie, to check on the insurance stuff.

(Marie, by the way, showed me her mother-of-the-bride dress that she just picked up today, and it is beautiful too.  After the wedding she's going to use it for her ballroom dancing competitions.  Marie is very cool and strong enough to survive working for Dr. D. all this time, AND she always says "don't worry about the money" and then she's right, so she is my hero in more ways than one.)

So, this thing was on Facebook today, and I love it, and I hope I can do it, EVERY DAY.

Helloooo Out There

It's useless to look back and see when I last posted - I can't even imagine that any of you had the incredible PATIENCE and determination to stick with me when I've been quiet for so long.

I don't know what started me up again, unless it's a scheduled visit to Dr. D'Amico next week, or unless it's that our rabbinic intern, now Rabbi Josh Stanton, was such a wonderful writer that he has inspired me to start up again.  Or, it could be that I "stopped" because I was worried that my writing had less and less to do with breast cancer and more and more just about stuff in general.  But my bff Elyssa reminded me that as long as I'm still dealing with this thing, even if it's not endless rounds of doctor visits and surgeries, my blog title still applies, and of course she's right.

Plus, I recently enrolled in an online course (gasp!  the first course I've taken since college) and now I'm beholden to actually answer to someone, and I'm scared.  So, in the ultimate act of overcompensation, I logged on today and did the first 3 assignments posted.  They weren't hard; introduce myself, choose my favorite photo representing online learning, and check off one of the things that is a unique characteristic of online learning.

Introducing myself was the writing part, and PROBABLY I wrote way more than the instructor intended when she asked for a brief piece telling everyone a little about yourself :)

But I guess they'd better get used to it now.  Some of the future assignments, like creating a whole online class, are scary to me.  Here's how I plan to be not scared:  my secret weapon - Elyssa is going to "audit" some of the classes with me, so I don't feel so alone and incapable.  She is the BEST!

And, to get back "on topic," I fooled around with temporary tattoos again for a week or so a while back.  It. Could. Work.

But I'm still not sure.

Cape Cod 2012 - First Days

This is a picture of sunset on the lake on the first night of our stay here.  And so far, each night has ended this perfectly - with a slight breeze and temperatures in the 70s.

It has been hot during the day, cooler at night and, so far, no rain.  Because we now travel Thursday to Thursday, we encounter very little traffic.  Because the every-other-week cleaning ladies showed up at 7:40 a.m. the day we left, we were forced to be packed and have everything into the cars before they finished at 8:30 a.m.  After making ABSOLUTELY sure Mario and Luigi would have all their needs attended to while we were gone, we were able to leave by 9 a.m.  Amazing what deadlines will do for you!

 So, we got to the Cape mid-afternoon, unpacked everything, picked up the inflatables and the air conditioner (for our bedroom - the dampness is a real issue here) from my dad's basement, and bought skirt steak and accessories for dinner, and it was still relatively early.  Andrew grilled and we feasted on garlic marinated steak, crusty bread, and dipping oil.  We were cleaned up and "just sitting" early enough to stay outside and enjoy the breeze. Plus, Alex, Joe and Andrew patiently endured learning to play Mah Jongg.  Their patience ended after one game as they experienced the beginner's confusion of looking at the card and trying to figure out what hand to play!

Friday during the day, while the "boys" stayed inside, I ventured out on my new pink (of course) inflatable and floated around for a while on the lake.  I think my body protects itself from the sun; when I felt too hot and came in off the water, I did NOT have a sunburn.  This is a first.  (Tradition calls for me to overdo it on day one or two, then spend the rest of my nights in pain while I regret what I've done.)

Friday night my dad and Elaine came over with salad, corn, and dessert, and Rod plus 2 boys went to pick up steamers and lobsters for everyone.  With our trusty blender-whirred pina coladas, we settled down at the long picnic table, tossing all the mess into heavy duty trash bags.  Elaine generously washed most of the dishes and we sat outside a little more looking at photos from our nephew's Bar Mitzvah back in May.  Then Dad threw the trash bag into the back of his car and drove away with the usually really smelly lobster shells, etc.

This morning I went over to Dad's to help him solve some of his computer issues, which I'm not sure I accomplished, but it was still nice sitting with him and wandering through the house reminiscing about some of the things Mom collected and loved.  He knows where every single thing came from.  It's really quite amazing.  In the afternoon, although it was in the mid 80s, we all went out to play miniature golf, another tradition.  Rod and boys also tried out the batting and soccer cages.  Everyone was pretty sweaty by then, so we "sought shelter" at the local seafood restaurant, Cooke's.

I think those early bird special people might have hit on something.  We got to Cooke's on a Saturday night on Cape Cod, in beautiful weather, just shy of 5:30, and we beat the line that sometimes snakes out the door.  We were settled with our chowder, lobster rolls, and fried clams (Andrew) as we watched the line get longer, and longer, and longer.  We were done and walking next door to Friendly's (!) for ice cream and back sitting out at the lake again by 7 p.m.  As I write I have been sitting outside in front of the lake enjoying yet another remarkably unremarkable, stunning day in this beautiful place that I called home for my entire childhood.

I know that most of my friends "back home" (after 30 years I guess NJ is more home than MA) in NJ/NY consider the Jersey shore to be their shore, but I don't think of the ocean without thinking of Cape Cod.  Every trip over the Bourne or Sagamore bridge onto the Cape is a signal that I am "back" and every trip over a bridge in the other direction still feels like leaving home.

I guess it's time to stop, since a mosquito just landed on my laptop - and, as everyone here knows, when the bugs come out, it's time to go in!!

With love from Cape Cod.

An Offer I Can't Refuse - Or Can I?

We met with Dr. D'Amico in early May - I timed it to be 6 months, almost exactly, after my last surgery.  As expected, he was very happy with his own work.  I mentioned to him that I figured some of the transplanted fat had "died" and he admitted that some had, but he did not say anything like "we might want to take a look at fixing this here" or "so, are you happy with everything?" implying that there might be something I'm not happy with.

  I got the go ahead to stop wearing the pressurized undergarments 12 hours a day. (I asked if everything was now officially "stuck back together" and he said yes.) So, now that 6 months had actually passed, it seems that there might not be any more surgeries.

However,  he did start up again with the aureola tattooing, which he feels strongly should be done - or, as he says (somewhat inelegantly for him, I thought) - a car with no headlights is not complete.  I have resisted this so far for various reasons: it's too soon, it might not be right (it's soooo permanent), it's too soon, what if I have a thin white shirt I want to wear, it's too soon!  He doesn't understand this, and to be honest, I'm not sure I do either.  But I am more positive about this than I am about just about anything else (okay, I'm positive I hate cilantro leaves) and after everything I have been through I think I deserve to be really ready.  When he leaves the room, the nurse furtively whispers to me "It's your body - you should do what you want."

But...as he surveys all the skin surrounding his handiwork, his eyes light on two moles I've had all my life, as far as I can tell.  Actually, through all the surgeries I secretly hoped their removal would be involved, but alas, they survived the blade every time.  He says to me, "Do you like those?"  "Nope," I reply, before I can stop myself.  "How about I remove those for you for free if you let me do the tattoo reconstruction?"  Free plastic surgery?  If I've learned anything from all the tussles with the insurance company, it's that plastic surgery is really, really expensive.  So, I am sorely tempted.  However, I have now successfully avoided the decision for another six months, when I see him again.

Somehow, I am still not. quite. ready. 

Playing Catch-Up, Part Two: Temple Topics

In the continuing effort to enjoy writing, and to post it even if it seems marginally (or not at all) related to "breast cancer," below is my final bulletin article for the year: 

Heirlooms Are Not Always Old

During the URJ (Union for Reform Judaism) biennial convention this year, there was, as there always is, a wonderful exhibition hall with vendors selling anything you can think of – furnishings for synagogues, software, books, jewelry, music, artwork, insurance – beautiful things and useful things and, mostly things both beautiful and useful at the same time!  As my family and I toured the hall the first day, we passed quite a few tallit vendors.  Some of them simply sold ready-made tallitot, and some of them were crafters offering custom work.

If you have had a sixth grader in the past few years and have attended the tallit and tzitzit workshop with him/her, you have heard the story of my tallit.  It was my grandfather’s, and a few years ago my aunt, who had inherited the tallit, passed it on to me.  Her reason was that she knew he would be so proud of the work I was doing.  (Every time I tell the story, and even as I write, her words bring tears to my eyes.)  Now, I am genetically programmed, courtesy of my mother, to be one of the most indecisive shoppers ever, so even though I had considered wearing a tallit for many years, the prospect of picking one out was just too much to bear.  The timing of this presentation was, as they say, meant to be.

My grandfather’s tallit is a shawl-style, very obviously made for a man.  That was okay with me, since it provenance was a part of its value to me.  However, it had come with a very heavy silver atarah, or neckband, and I had removed that, so it was missing “something.”  As we visited the tallit vendors each day, I stopped at one particular stall and asked the woman about just an atarah, not a whole tallit – would she consider creating that?  She would, and we went about designing this completely unique piece.  (She would subsequently mail me fabric samples and paint samples and drawings, and we exchanged numerous emails.)  The only problem was, what would I want to put on it?  The most common prayer, the one about being commanded to wear fringes, does not really apply to me.  Other blessings did not seem to be quite perfect, either.

I talked to my husband, Rod, about it and we went back to the stall right before the end of the convention, still undecided. One of the display tallitot had Hebrew wording on it that I did not recognize, so I asked her what it said.  It said, “Pray as if everything depends on God; Act as if everything depends on you.”  This is one of my absolute all-time favorite sayings, but I never knew what it was in Hebrew.  Sometimes your decisions are made by the power of bashert, of meant to be.  A few weeks later, my beautiful new atarah arrived in the mail, and I had a blissful morning of hand sewing it onto my grandfather’s tallit.  I sewed carefully with pink thread to match the silk, making the smallest stitches possible, not wanting to ruin this artisan’s work, but not wanting to use a machine because for some reason I had to put “me” into it.  And now I have a tallit that is my grandfather, and is me, and is truly an heirloom in so many ways.

As we end another year of religious school, I hope that some of the student-crafted seder plates and Shabbat placemats and wooden Chanukah menorahs and challah covers become heirlooms for your family.  And I hope that some of them come with you on May 20 to be displayed as cherished Jewish family pieces, side by side with Grandma’s silver candlesticks or Zayde’s Kiddush cup.  My grandfather’s and my tallit will be there.

(Author's note:  and yes, the atarah is pink for a reason.)

Playing Catch-up, Part One: the Annual Letter

Figured that since some are not lucky (or unlucky) enough to be on our mailing list :)  The McVeigh Family Annual Letter - in continuous publication since 1986!

Since our last letter didn’t actually go out until April, it seemed like a good idea to write now and actually come close to sending an “end of year” summary to you all.

    I spent the summer getting more accustomed to my new physique.  In September I saw the surgeon and he and I agreed that we were not “finished,” and so on November 8 there was one more surgery, hopefully the final stage of my reconstruction.  I have 6 months from then to fully heal, and I’ll go back again in May to see if I truly am no longer “under construction!”  I continue with my Tamoxifen regimen and a wonderful oncologist looks after me while I wait out the 5-year time period that, if I get through it without a recurrence, will officially make me cancer-free. All the other things I do (work, volunteer, organizing family, studying, etc.) help me keep some prospective in the meantime.

    On Labor Day weekend Andrew proposed to Jackie on the steps of the Jefferson Memorial in Washington.  Thanks to her friends who were there, we even have photos of him on one knee, ring box in hand.  They will be married sometime in 2013, at which time they will have been dating for over 10 years!  Andrew was promoted a couple of months ago at the Lowes where he works, and still shares a house with friends in nearby Fairlawn, which is handy to the train line that gets him into Manhattan to visit Jackie at her apartment.  (She graduates from Cardozo Law School this June.)  

    Alex is maintaining a nice healthy GPA at Montclair State, where he is on track to graduate with a BS degree and a paralegal certificate in about a year.  He continues as president of the Montclair University Gamers, and hopes to help his club move up into “Class 1” status, which gives them more funding throughout the year. When he’s home, he’s very definitely a college student, as he sometimes goes to bed just before we’re getting up, and sometimes gets up as Ari gets home from school.  Once he goes back for spring semester, I’m sure he’ll be on a schedule that’s closer to human than vampire…

Ari has distinguished himself with honor roll status for two semesters in a row now, which is a pretty good thing considering we’re going to have to start looking at colleges soon – too soon.  He has been more involved in youth group this year and continues singing with the synagogue’s adult choir (now as a bass) as well as his chamber choir at school.  This year they once again sang on the great stage of Radio City Music Hall before a Christmas Spectacular show, and although this is the third year they’ve been invited to sing, it remains a thrill to see them perform there.

    Rod did not have to spend quite as much time ferrying me to and from doctor appointments this past year, but he is still far more familiar than he ought to be with helping me out of a car while I shake off anesthesia.  He has been there with me through everything while still managing to fit in his job as HR Director at Konica Minolta as well as his volunteer work on the boards of Bergen Community College, Project Literacy and the synagogue’s brotherhood. He’s looking forward to celebrating the Year of the Dragon since it’s his year!

    All five of us, plus Joe Campos, one of Alex’s college friends, enjoyed a week on Cape Cod in late July.  We had great weather, played lots of miniature golf, and did more reading than we get done during the whole rest of the year.  Noteworthy fall events included Hurricane Irene and the “Halloween blizzard” which cost Ari 4 snow days and took many branches off our trees, but both times we did not lose power and thus were a haven for power-less Andrew and Alex (and friends.)  We celebrated Thanksgiving with Jackie and with Rod’s parents Maggie and Tom, who are still enjoying their new digs just a half hour away in Teaneck.  

    For Christmas Eve the senior McVeighs once again treated us to a delicious sushi supper at our favorite Japanese restaurant, and we shared a lovely dinner the next day in the private dining room at their place.  Earlier in December, Rod, Ari, and I helped to represent our congregation at the URJ (Union for Reform Judaism) national biennial convention outside of Washington DC at the beautiful Gaylord Convention Center.   There were between 4,000 and 6,000 people in attendance at various workshops, services, song sessions, and plenary sessions for all five days; it was exhausting but an amazing experience.  Ari participated in the NFTY (North American Federation of Temple Youth) leadership track, so he stayed in a different part of the hotel, but he was certainly among those cheering from the teen contingent when President Obama spoke at one of our sessions and said “I hear NFTY’s in the house!

    We spent New Year’s Eve with a small group and lots of the night’s theme ingredient – soup!  The next morning we reconvened with the larger daytime contingent of our 20+ year regulars and enjoyed wonderful conversation, food, and drink, in unseasonable 50 degree weather.   That day we were lucky enough to spend some time on Skype with our longtime friends Garry and Lois Karner; less than 3 weeks later Lois passed away suddenly in her sleep, and the shock and sadness of her untimely loss is still with us.  

    Although adversity nudged us a bit in the health (and weather) department, we navigated through the year on the “hope for the best and prepare for the worst” plan and that has kept us moving ahead.  As we arrange and then rearrange our schedules to get everything done, there seem to be fewer opportunities to sit back and appreciate all we have, with all the ones we love.  So, our aim for this year is to make sure to find that time – to make that time.  We wish all of you a wonderful 2012!

Checking (and Weighing) In

No posts since November 28.  I read back over that one and think, not for the first time, how far I've come.  Part of the reason I haven't written was because there was not much to say.

I've been to the oncologist, she confirmed that I am indeed not making any more estrogen, and she switched me to Femara (generic: Letrazole) which has a new set of side effects, some the same as the tamoxifen, some different.  And I thought just for the 3 1/2 years I had left after 1 1/2 on the tamoxifen, but no; 5 years on this one.  Uncharacteristically (I felt) for her, she said that even that was no guarantee that breast cancer would not return.  This whole 5 year yardstick is a load of crapola, apparently.  Terrific.

On the upside, work and family have kept me busy enough to not think about things more often than I used to.  We (Rod, Ari & I) had a lovely trip to a conference center outside of DC for the URJ biennial in December - Barak Obama was one of the speakers - and in February I accompanied our rabbi and teens to the DC area for the Religious Action Center's L'Taken program.  Four whirlwind days of bus, study, prayer, lobbying, and touring.

For the record, I'm still wearing the corrective/restrictive/restraining undergarments.  My appointment with the plastic surgeon was scheduled for earlier this month, but since he had answered two of my questions (When can I stop wearing these things and still be a good patient?  and When will we know if the fat transplants "took?") with "in six months," so I figured to not go see him again until the six months had actually passed.  Makes sense to me.  Who wants to go to the doctor so he can say "we'll see in another month" and then know he's not going to want to see you again that soon?

When I went to the oncologist I got weighed and I weighed pretty much the same as, well, forever.  Which is not exactly what I'd hoped for.  After all, the surgeon removed a whole bunch of fat.  I've gone down to a size 1 at Chico's (love their sizing system) in the pants department!  So for a change, I have decided to rationalize the weight issue in two ways that may or may not be scientifically accurate, but I'm not sure I care.  One, the implants have got to weight SOMETHING.  They certainly seem to weigh enough to make me acutely aware of them, except when I'm really busy or asleep.  Two, I've taken to walking a quick mile or using a mini elliptical machine for 15 minutes that Ari convinced me to buy from QVC (or HSN, or wherever), 5 times a week.  I'd heard that muscle weighs more than fat, and that the only thing that matters is how your clothes fit.  Let's go with that.

Another reason I hadn't written was that I thought a lot of my writing wasn't DIRECTLY related to the reason this blog was started in the first place - breast cancer.  I was writing about trips, and family, and work, and other fun (and not so much) things going on in my life.  Did I need to start a DIFFERENT blog to do that in order to remain true to this whole endeavor?

I've decided that if getting through breast cancer (again) was about anything aside from medical issues, it was about everything.  If it's about me, than it's about me.  And it shouldn't all be IV complaints and scar tissue and fears and medication and doctor appointments.

Huh...turns out I had a lot to say after all.