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.  

Better is not the same as Good

Thankfully, things did not get worse from 11/16; however, it would be a stretch to say that they are just ducky now.  I worked assiduously at wearing my garments 24/7, and when my lovely friend Evelyn accompanied me to the doctor on Monday, I had put enough Emla cream on, and early enough ahead of time, that I was able to withstand the fluid draw much better.  Yes, more fluid, but I was told not so dark red.  I took their word for it. Monday is such a sucky day to have this done, but at least this time they had called me in early (11:30) so Evelyn dropped me off back home in time to rest for a bit before work. And, I was now allowed to NOT wear binding undergarments to sleep in, but still need supportive tops for at night.   For some reason, my entire abdomen was really sore after that one for the entire day - I think I made it through work, but just barely. 

He asked to see me the following Monday at 1.  Ugh.  Monday again.  But oh well.

The very next day, I get a call from his office saying he'd like to see me tomorrow (Wednesday) before the long weekend.  I was in the middle of conducting a double Bar Mitzvah rehearsal at the time, and did not have the composure to excuse myself to say, essentially, "What the hell?"  So, I fretted about that for the rest of Tuesday, having misplaced Tania the nurse's cell #.  Did they test the fluid and find an infection (no, duh, otherwise they would have told me to refill the antibiotics ASAP).  Did he suddenly remember that something looked wrong?  A tired imagination is a terrible thing - and should be wasted.  Everyone (Rod, Evelyn, and any teacher who came into my office that afternoon) said it was probably just because the office would be closed for the Thanksgiving break and he wanted to be sure to start me off with as little fluid as possible.

So, the day before Thanksgiving off we went - Rod reassuring me that this was a good thing (!) and me with my trusty Emla cream and Saran Wrap.  And out came the needle and there went more fluid.  But less than last time.  When Rod pointed out (quietly, he thought) to me that it had only been 2 days since my last visit and maybe that was why, nurse Donna said "I heard that!  It's just less and that's good!"  I think maybe she used to be a cheerleader.

Obviously I don't have a medical degree like my doctor does, but it feels like all of us are now grasping at straws. At this appointment I was asked to buy a binding strap-type thing that stays on with velcro and the tighter you pull it the tighter it binds.  That was to go on top of the waist-high girdle thingy. And, I was told to "stop moving so much."  Huh.  Thanksgiving the next day and we weren't having a houseful, but we were hosting.  After a purchase at the surgical supply shop and Rod doing "surgery" on the new purchase to make it fit, I was now both girdled and bound.

And I tried not to move.  Really I did; Rod can attest to that.  Thanksgiving required some, and yesterday we went to friend-as-family Jesse Shearer's Eagle Scout ceremony.  Today (Monday) is now the next appointment (in a couple of hours,) and I don't know what the heck to expect.  I'm tired of hesitantly (and gently) poking that area of my abdomen seeing if it springs back, indicating - you guessed it - fluid.

But there's much less, I think.  In the "no good deed goes unpunished" category, I'm torn between telling him the truth - that I've faithfully worn two layers of binders pretty much all the time since last Wednesday (including DURING Thanksgiving dinner,) and being doomed to repeat this for another week, or telling him I've only worn it about 1/2 time per day because it's all I can handle, the "all I can handle" part also being true.  I wear it all the time, but my ribs ache, it's hard to sit and stand up straight, and nobody can really know if that's why there's less fluid, or if it's just receding/absorbing on its own.

I haven't had more than 5 hours of sleep in 3 weeks, and I'm starting to wonder if this is ever going to be worth it; indeed, I'm starting to forget what worth it actually is.  I know now that I overdid it just after the surgery, but I was undereducated and can't go back there in any case.  It's just a matter of getting this part done and over with.

I've read some other women's stories while cruising the 'net and for many (many more than you would think) the reconstruction process takes not months, but years.  For myself, I'd like to get to the point where I'm not in pain and/or requiring a surgeon visit weekly.

Humorous (I thought) interaction from one recent appointment: 

Me:  How will I know if the fat grafts have stayed alive or are dying off and you have to do it again?
Him:  You won't.
Me:  So you're not going to tell me what to look for, but you know what to look for?
Him:  Yup.

Remember the mantra - "trust the doctor....................."
 

November 16 Turns on Me

As you may or may not recall from blog entry from a few days ago, here's how I thought surgeon follow-up might go:  "I'm a little apprehensive about whether I'll be praised for my adherence to the whole undergarment endeavor, or lectured on why I should go out and buy tighter ones."

Hah.  From where I stood (completely exposed, most of the time, with a cast and crew of Rod, the doctor, his nurse Donna, and someone who I suspect is a trainee of some kind but whose demeanor and dress remind me of the era of Rosie the Riveter, not the kind and compassionate staff who have helped me in the past.

I have not yet realized that I have "overdone" it for the day (fresh off of Ari's Radio City performance, described in previous "happier" entry.) We start off okay; the doctor is very pleased with the upper level work, and says I'm healing ahead of schedule. 

Lulled into a feeling of ease, I show him the rest of the territory, and he immediately sees the fluid buildup in my lower abdomen (which I suspected was there but thought would absorb by itself over time.)  Here's where one of my wretched imaginary situations happens - he pulls out a needle and a tube and a bag or something and tells me not to look, and, well, he got a lot of fluid and it HURT.  But I've been through hurt and was glad to get rid of the fluid.

He takes a look at the ultra firm garment that I'm so proud of and notices we've slashed the top so it won't dig into my ribs.  Well, this will not do at all.  What if it rolls down?  So I change into another kind I've brought with me which seems to appease him..  Then, I start with my little notebook page of questions, which he is entirely used to, and I think, mildly amused by at this point.

Here is where I made my fatal error - I was told by the nurse I needed to sleep on my back, and it was getting a little tough, so I thought if I hauled out the ole' longline bras for more support at night I could wear them just to shore things up and allow me to sleep on my side.  He took one look at the LLB, his eyes lit up, and he decided  it would be the PERFECT thing to keep on over the waist high girdle, ALL THE TIME, to keep the waistband from rolling.

In an effort to explain that I was trying to make good progress, I told him I was getting along with pain control with just 2 Advil in the morning and then 3 at night - no other pain relief - so proud of myself for not using the Oxycodone.  And he said, basically, that's why I probably had this extra fluid problem, from the Advil.  I felt like I had been punched, not physically, but intellectually.  I have tried so hard to be informed about what could go wrong, how to work at avoiding it, and everything else; I was just furious and disappointed and beyond consoling.

 Then he tells me he wants to see me again on Monday (my longest work day) and, as it turns out, at 3 p.m., which is right around when I go to work.  So the realization that I would need to get coverage for myself yet again, pilot myself the half hour to 40 minute drive to (and then from) Englewood for an undetermined amount of time on Monday afternoon, potentially have more fluid drawn (painful but necessary, I know), and possibly (once again) not have anything positive said about my recovery, added to the lack of rest of the day so far - I just couldn't help it.

When poor Tania (the new nurse/receptionist who is lovely and even gave me her cell #) asked if I would sign a release to have photos of my work posted on the practice's website, I had enough control not to rip it up and throw it at her.  I simply asked her to put it back in my file and maybe I'd feel better about signing it on Monday. (I know I'll sign it eventually, since I've already let him "show me" at a big convention in Milwaukee:)  But I wasn't doing one more thing for that office yesterday beyond trying not to cry in front of the other waiting room occupants.  By the time Ari & Rod got me down in the elevator and Rod went to get the car from the torrential downpour to where we were waiting, I was sobbing pretty hysterically on poor Ari's shoulder.

Got home, crawled into bed completely dressed, and slept for almost 2 hours.  Rod very kindly brought me a chocolate milkshake for dinner, which I shared with Ari.  Figured things were going to be okay.

Right.  2 a.m. wake up, do the regular routine - get a drink, potty run, back in bed.  Then the waterworks, all over again.  Half an hour in I realize it's not stopping so I go sit in the family room, where Rod finds me (around 4, I think).  Half a box of tissues later, I still haven't figured out what's exactly wrong, but I'm cried out enough to go back to bed, take a couple of nerve-soothing (really low dose) Ativans, and finally fall back asleep. 

I don't know if I'm angry at the doctor's office for not giving me ANY post-op instructions on the liposuction part of my procedure, so I felt completely under-educated and unprepared for what happened, or if I'm angry at myself for not pushing harder to get the information, or for overdoing it so much in the past week as to maybe cause this sort of "breakdown", which is the only thing I can describe it as.  I know from past experience that you really can't dig yourself out of a funk by concentrating on it, so today, I'm going to concentrate on doing some fun stuff (Hebrew grammar exercises & Food Network programming), some work stuff (remotely from home) and as much rest and fluids as I can legitimately handle.

Tonight is the synagogue's Eternal Lights dinner, and it's a great evening - not stuffy or anything but a lot of laughs with really nice people and good food.  I was really looking forward to it, but now I'm not so sure.Gosh, I hate this feeling.............................

  Maybe I'm just going to have to go and get it to work its own magic once I get there.  A little makeup, a little jewelry, perhaps just one little Cosmopolitan?