It's Beginning to Look a Lot Like...October

Since tomorrow is October 1, and officially the start of "breast cancer awareness month," it seemed an appropriate opportunity to get in a little bitching and moaning (just a little.)

Facebook is full of uplifting breast cancer stories, research news, and the like - and most of the time I find it interesting/reassuring/informative/entertaining.  But the latest "news" story to make the rounds, and Facebook, is that research is showing that a mastectomy may not necessarily prolong the life of a breast cancer patient any more than a lumpectomy would have.  And the rate of mastectomies is rising in young people, fueled, we are told, by Angelina Jolie's preemptive surgery when she learned she had "THE" gene.

Having had a lumpectomy and then a mastectomy (quick history: diagnosed in 2005 with less aggressive form, lumpectomy & radiation, diagnosed 2008 with LCIS "marker" pre-cancer, diagnosed 2010 invasive on other side, ability to "save" breast uncertain) I can say that all of these stories should come with a giant neon sign that says "THIS MIGHT NOT APPLY TO YOU" and maybe a couple of Ativans with a margarita chaser.

I so don't appreciate a study telling me that the surgery and all the accompanying angst, therapy, reconstructions (I think I'm up to 5 now,) body image nonsense (in that it doesn't make sense that a person is able to literally cut out the cancer and be luckier than a lot of other people who are far sicker but still doesn't feel good about herself - it should make sense, but it doesn't; hence, nonsense) that I did BECAUSE I thought it would help, says that I made the wrong decision.

At any rate, that's how I hear it.  I hear "you silly woman, you should have really, really waited and made absolutely sure before you did this and now you can't undo it."  And almost 5 years later, I still doubt myself.  Looking back, it feels like I had to make a decision, and not take too long about it.  After all, the big thing about cancer is that it grows, and faster than normal cells.  So every day you take to decide might be another day the cancer gets to visit more exotic places in you, like your lungs ("so much fresh air"!) or your liver ("come luxuriate in the hot bile spa!")

How the hell do you know?  You don't.  You don't ever, ever know because every single one of us is different.  We eat differently, we exercise differently, our relationships are different, we stress (or don't) differently.  There are so many factors that it would be impossible to know, FOR SURE, if what I did on June 28, 2010 prolonged my life.  That stupid jerk cancer does not discriminate between people with a "healthy" lifestyle and those who like pasta, and chocolate, and bacon.

Every time I think I've handled the "hardest" part of all this (the decision? the extra surgeries? the "sleep aids?" the side effects every day I take a pill, which will be another 8 years, at least?) I find something else that is going to be harder.  I don't live in a bubble and I don't intend to sever ties with the world of social networking, or cancel my newspaper subscription, or stop watching television.  I'm the only one I have to defend my decision to.   And I have to get comfortable with it. And I don't want that to take 5 more years.

Trying to think like a SURVIVOR is hard work.

Facebook 5-Day Gratitude Challenge

Since a friend had "tagged" me to do one of those gratitude challenges which asks you to list 3 things you're grateful for each day for 5 days, I decided just this once to do it.  But I broke the rules, a little, since I didn't "tag" more people to take the challenge.  Gradually, I become more and more intrigued by the idea that thinking really hard about what I was grateful for, beyond typical things like "I'm grateful I slept until my alarm went off" or "I'm grateful  that my gas tank was not actually empty as I rolled in on fumes to the gas station" reinforced the idea that all in all, there's a lot to be thankful for.

So, reprinted here, with a few edits, is my answer to the 5 day gratitude Facebook challenge:

As much as I'm not a big "get tagged and do something" kind of person, thank you to Lisa Lamster for getting me to post 3 things I'm grateful for - for 5 days. Ordinarily I'd put this kind of stuff in my blog but I've been too busy to write there. So - Day 1:

1. I'm grateful for my husband of 30 years Rod McVeigh for teaching me not only how to fix things and enhance/embrace my inner geek, but for showing me the importance of family; he is a dedicated son, spouse, father, and brother.

2. I'm grateful for my dad Arthur Bernstein (who isn't on Facebook but if he was he'd have more friends than me!) If I have one fourth of his sense of humor, his compassion, and his common sense and even a smidgen of his faith, and it continues with Andrew McVeigh, Alex McVeigh, and Ari McVeigh, that would be pretty awesome.

3. I'm grateful for my in-laws Tom and Maggie McVeigh. Never once have I felt like a "daughter-in-law." I have always felt like a member of the family and I have always felt appreciated. I know how rare that is.

Gratitude Challenge Day 2:

1. Although not my favorite day (because it's the longest day of my workweek) I am grateful for Monday...and Tuesday...and Wednesday...all the days, all the weeks, all the months, and all the years. I'm pretty sure I spent a lot of time not being grateful enough, but I sure am now.

2. I'm grateful for my friends who put up with a bit 'o crazy and still stick around. You teach me how to be a friend and let me practice on you And bonus points for those who have gone to various doctors with me when Rod can't make it. That's a special kind of devoted.

3. I still have no idea what I did to deserve my amazing "job" and the tremendous satisfaction I get from doing it (most days.) But I'm grateful to all of the people who work with me, both professionals and lay leaders. I couldn't do it without you.

Gratitude Challenge, Day 3:

1. I'm grateful that my breast cancer was caught early - twice. It might still be lurking, but each day that passes I dwell on it just a little less. There's a victory in there somewhere.
2. I'm grateful that I have doctors who do their jobs well. From the surgeons and oncologist to the other medical/dental professionals who I've been lucky enough to find along the way, they continue to care for me with kindness and skill. And I cannot overstate the importance of decent health insurance. I don't know where I'd be without it.
3. I'm grateful that I have places to go and things to do, even though I might complain and you tell me I look "tired." Probably I am tired, but I'm never bored. 

Gratitude Challenge, Day 4:

1. I'm grateful for my daughter-in-law, Jackie D'Arminio. She's smart, she's sassy, she asks for (and sometimes even takes) my advice, and she loves my son. (I told you she's smart!) And she writes a really cool blog at jackieandthefarmbox.blogspot.com.

2. I'm grateful that my boys (none of whom are still, technically, "boys,") continue to say "I love you." And they mean it. AND it comes with hugs and kisses.

3. I'm grateful that Andrew and Jackie entrusted me with the TEMPORARY custody of two of the softest creatures on the planet, twin chinchilla boys named Mario and Luigi. These little guys have cheered me up through a lot of down times. 

Gratitude Challenge, Day 5:

1. I’m grateful that my boys eat lots of different foods, and to my husband, Rod McVeigh, who made this possible by encouraging them to try things from an early age. He shared his multicultural upbringing and love of “exotic” delicacies with us all. I am additionally grateful that somehow my children do not have food allergies, and have boundless admiration for all parents who keep their children with food allergies safe and happy on a daily basis.

2. It may sound cliché but I’m grateful to have the chance to say “thank you” not just in these 5 days, but also that my workplace encourages random statements of gratitude the same way we encourage random acts of kindness. It’s not a part of our official mission statement, but it is cultivated and modeled by Rabbi Joel Mosbacher who thanks us all the time. It encourages me to “pay forward” the gratitude.

3. Last but not least (and having come full circle in this endeavor,) I am grateful again to Lisa Lamster for starting me on this 5-day exercise. It has really made me think about all the good things and wonderful people in my life. I hope you know how thankful I am for you all, and I encourage you to pass it along, one way or the other. 

Wanna See 'Em?

I wanted to share a video I saw on Facebook that, as a responsible adult who has a lot of "student" FB friends, I cannot share there.

http://greatergood.me/1ATibab

The preview guarantees you will laugh.  I smiled a bit, but mostly I cried.  (Happy? Sad?  Hard to tell.)  Frankly, I have no idea.  And it looks like all of these people had chemo, which I did not.  I think the one thing people who have no experience with breast cancer will find really funny is the woman who say, "Want to feel them?  Go ahead, feel them!"  


Oddly enough, that's the one thing I would NOT ask people to do, since I don't think they "feel" natural at all.  As a matter of fact, I worry when I hug people that they're going to think "boy, I can really tell those aren't real."

And when I leaned over the back seat of a friend's car to get at something in the "way back", I just couldn't.  The parts of me that would usually flatten a bit and flex and essentially, get out of the way, did not.  I consciously had to readjust my position and try again.  I've already written about bumping into things without realizing it - me and the Roomba.

There ought to be a session of some kind before a mastectomy (not just for people whose friends throw them a party, but for everyone) where you get to feel your real breasts - really feel them, and try to remember what they feel like.  (Maybe make a video.) Also, you should be sure to take a photo to help you remember...

I need something to remind me that what I have now looks better instead of what I'm pretty sure were kind of droopy.  I do not need anything to remember that what I have now is not going to kill me.  That much I know.  BUT, I wish to hell that I could remember what I was, what they were, how I looked, and how they felt.

The only thing missing from this video is "Wanna see 'em?" THAT, I would say to you, any time you want.  If it keeps just one person from feeling afraid to have this potentially life-saving surgery because of what he/she might look like afterward, I can help with that.

One Tooth Over the Line

A few weeks ago I found myself thinking about losses, and how many one could manage to handle without just crying all the time.  I thought it was pretty wonderful that humans were built to somehow "manipulate" their sadness by allocating energy to really feeling it only when they were ready to, and (mostly) not at inappropriate times in inconvenient places, like during a child's choir concert (tears of sadness, not joy) or on line at the grocery store or the bank.  (Yes, I still go into the bank once in a while, because the wait is shorter than at the ATM.  Don't judge.)

Then other things came to be be on my mind, like finishing the religious school year, and refurbishing my office, and getting ready for confirmation, and celebrating milestones (birthdays, work anniversaries - fun stuff) and I forgot about the conversation I was having with myself about loss in general, and my losses in particular: mother, sister-in-law, friends, breasts, etc.  Life went on.

This morning I got a call to (I thought) confirm my dental checkup appointment for tomorrow at noon.  As I was getting ready to say that yes, I'd be there, the receptionist told me that the dentist will no longer be doing my cleaning, and that they would make my appointment with a nice hygienist. 

You should know that for much of my life I have hated the dentist.  As a child, our dentist seemed to do his best to pull my lips completely off my face in an attempt to reach every tooth in his inspection, as did all the hygienists while they cleaned.  As a young adult I never found a dentist who could "undo" the anxiety that had built up, and luckily I have pretty strong teeth so it wasn't a huge problem. 

About 25 years ago the local pediatric dentist brought in a part-time guy to treat the parents, to see if he could build up a bigger clientele.  And that's when I met my dentist, Dr. Boff.  He was pretty young but nice, likeable, didn't treat me like a child (has NEVER ONCE said "I see we aren't flossing, are we?") and was gentle but thorough.  He nursed me through my first and only crown and has been my dentist ever since.  At the time, he didn't get assigned a hygienist, so he did his own cleanings. 

It was a perfect setup for me - I only dealt with one person, I trusted him, he treated me well, and he inspected while he cleaned so it saved a little time.  Then he left that office and I followed him to someplace in Ridgewood, where he continued to be my dentist in just the same way.

 When he set up his own shop (a lifelong dream of his) in Ramsey I was there, and Alex, my "idiosyncratic" son trusted him, as Dr. Boff took extra time with him to allay his fears.  Shortly afterward the other 2 boys chose him as their preferred dentist too.  I've sent many friends to him over the years, and I don't regret that at all.  He and I have chatted (well, he chats, I mostly mumble through his work) over the years about baseball, his wife, his kids (all of whom he acquired during our relationship) and his health.

Despite a few fillings, some painful scraping, and all that goes with a dentist visit for the non-scrupulously brushed/flossed/rinsed set, my anxiety about going to the dentist gradually faded, until I no longer regularly delayed my appointments. As a matter of fact, I haven't delayed them at all - until today.

I told the receptionist that this would really be quite a change for me and I would have to think about it, half hoping she would say something like "Oh, never mind, I didn't realize it would be so hard for you - we'll just make an exception in your case."  Or that Bob (that's his name) would suddenly call out, "Don't call Rebecca - I'll keep just her!"  But she didn't, and he didn't, and I hung up the phone.  I started to write an email to the office to make my case for exceptional treatment, because I had always had "exceptionally good" (got that nice turn of phrase there?) treatment, but I just couldn't figure out what to say.  So I called her back and promptly burst into tears.

She was horrified, told me it was nothing personal, which I gulped that I understood, and said I'd have to figure things out on my own and get back to her.  I told her it was NOT. HER. PROBLEM.  But I can only imagine what I must have sounded like, sobbing away and trying to explain that I needed to talk to all my friends who went there (remember, I got them some nice business, but I didn't say that) to see which hygienist might be the least problematic for me.

 I told her that I certainly don't feel as old as I actually am in people-years most of the time, but that this particular thing has made me react like an "old person."  Make that "old, cranky, demanding" person.  So she said she'd talk to him and I said I'd talk to my therapist (that I have because I have BREAST CANCER and a MASTECTOMY and couldn't you people be just a little sympathetic? - None of this was said out loud but I sure did think it.)  And we left it at that.

Conclusion:  my theory that the sadness of personal loss is cumulative is pretty dead-on, at least for me, and my theory that I can manipulate my sadness into appropriate and tasteful times/places is shot to hell.

Can't Touch This

Way back in late June of 2010 while I was still in the hospital recovering from my mastectomy,  I remember each breast surgeon's nurse (my roommate's surgeon works with my surgeon in a partnership) coming to us and giving us a "care and feeding" lecture on our new selves.  We were told, in particular, to be careful about getting burned.  Because nerve endings were disrupted (destroyed) in the surgery, the reconstruction areas would have no feeling.  (I desperately hope this will not be permanent, but based on personal experience, well, I just keep hoping.)  The shiny side of this (if you want to look at it that way) is that any further surgery I've had on that particular area just doesn't hurt.  It's so odd.

At any rate, she said to be careful about too-hot showers, mostly.  But also she said not to cook with that area "exposed."  Now, I do not regularly cook topless.  Jokes about men cooking bacon come to mind but all joking aside, there are WINDOWS all over my house, and sometimes (now adult) male children.  So, cooking barechested over an open flame is not going to happen until I get old enough not to care what people see.  And maybe by then I'll have some feeling back, anyway, so it all works out.

We acquired a Roomba the other day, and that same day I bumped into something, as usual, chest first (other than stubbing my toe endlessly, which is decidedly not numb.)  I felt a little like the poor Roomba; it bumps into something, and its sensor bumpers make it turn around and go someplace else.  The difference is, it FEELS somehow that it has run into a thing and reorients itself, then merrily heads off in another direction, while I just look around to see if anyone else noticed.  

This morning in the shower, I flashed back to the whole "being careful in hot showers" advice.  In a classic, really belated case of "I wish I'd thought to say that at the time," I realized that being in the location that they are on my body (not like a toe you'd dip in or a hand you'd wave in the water) the odds of me making a shower hot enough to burn one part of me while NOT burning the rest of me were pretty small.  (Doesn't the water usually hit you kind of all at once?)  But in June of 2010 I didn't think of that quick retort, probably because of the little anesthesia thing, the pain thing, the waking up missing major body parts thing.......

So a question I did not ask at the doctor's office the other day is: will more surgery disrupt the nerves even further, and take me back to square one on getting some feeling back (will I ever NOT be on square one?)  As my priorities in life constantly rearrange themselves, I'm beginning to wonder how much I really care. It's one thing to say you don't care, but it's another thing entirely to follow through when you walk into things/people without realizing you're actually touching them.

Meanwhile, the Roomba (no name yet) provides distracting entertainment.Yesterday (the day we unpacked it) it got stuck on one of the sticky traps we keep under the sofa to catch crawly things.  It went quiet for a while, screamed something, and gave up.  Not lethal - Rod fixed it last night - but kind of hysterical.  Alex says it needs googly eyes.....

Non Nervous Nellie

The plan WAS to go for a quick walk after services, go home, shower and dress for the appointment with the plastic surgeon.  For starters, I was going to see him alone for (I think) the first time.  No Elyssa, no Rod, no Evelyn, nobody but me.  I had left a lot of time to get from services, to the walk, to the cleanup, to leave early for my appointment, to give myself time to calm down for the argument over aureola tattoos I was sure we'd have.  He is historically behind; it's just how things are at Dr. D'Amico's office and that's what you plan for.

Having been back home now for a couple of hours, I would say that I am inordinately pleased with how my day turned out, though not how I envisioned.

Services went as planned (not that I was in charge.)  Lovely small (but big enough) group who put their "whole selves in," as Joel Mosbacher likes to say, with prayer and song.  We chanted the Torah and Haftarah blessings together, we cried together about our losses, and we finished with kiddush and a sweet snack of chocolate toffee matzah (I didn't make this particular batch, but I have the recipe!)

And then commenced the socializing.  As it happens, long-time friends Leslie, Jane, and Lisa were there today, and we all sat together during services.  Afterward we did some catching up, and since my doctor visit was by then generating a decent amount of anxiety, it became the topic of conversation.  "You'll be fine."  "Don't forget to ask questions." "I'm sure he's very good; you look great already."  (This last bit is always nice to hear, considering how far I've come to get to this point.)  Long story short (or short story long, as it were,) I was there enough time kibbutzing that I did not have time to change into my jeans and sneakers and go for my walk.

So I hightailed it home, grabbed a quick shower, changed into the thinnest white tank I own (more about that later) and flung myself into the car.  It was then almost 1:20, and I had planned to allow 45 minutes to make what is under ideal conditions, a 30 minute drive to a 1:45 appointment.  I called the doctor's office and confirmed that he was already behind in time, and the information seemed to "free" me somehow.  I relaxed, but instead of taking a leisurely right-hand lane Sunday drive kind of path, I drove my trusty minivan more like a race car.  All of a sudden I paid careful attention to all the lanes of (hated) highway; I signaled, and moved back and forth to maintain the highest (legal, sort of) speed possible.  I was no longer nervous about my appointment, and when I finally glided in to the parking lot EARLY my anxieties were gone.

Of course, arriving early does not guarantee being seen early.  So I sat in the waiting room for over a 1/2 hour (sometimes we've waited over 2 hours) filling out some new paperwork.  He now takes my insurance.  Is this good news?  Time will tell (and so will I, when I find out!)

A review of the basic "he said, she said" history - Dr. D'Amico feels that a reconstruction without aureola tattooing and nipple reconstruction is like a car without headlights, among other interesting metaphors.  I feel that one of the benefits of the mastectomy (other than the obvious, that of cutting out cancer cell-hosting tissue) was that I could FINALLY wear thin, close-fitting shirts.  And for the past four years I've been fairly adamant about this.   I wore the special white top to show him what I meant.  He reluctantly agreed he could see my scars through the shirt, and conceded on the nipple reconstruction...

He's been fairly adamant about his opinion on the tattoos though, and in conversations with other women who have faced this dilemma I have no clear "winner" one way or the other.  Even other doctors I've spoken to have come down on both sides of the discussion.  Bottom line is, I should do what feels right for me.

And I just DON'T KNOW.  If I get them, will I fell more like these parts of me are now "real?"  If I get them, will I now have the unwanted visibility through the shirt issue I had before?  If I get them light enough to NOT show through, will that be so light that it just doesn't look natural compared to what I was born with?  It's pretty damned permanent, and so hard to decide.  Shouldn't I be healthy enough psychologically by now and grateful enough to be alive that this should not be such a big issue for me?

Today he started with "Let me ask you, are all the pictures on your walls unframed?"  I responded, "yes, I know, car without headlights, unfinished painting...."  

I was completely honest.  I told him I've wavering a little, but I wanted to know if this SHAPE (right kind of round with a flat front, left kind of more realistically shaped) is what is going to be now and forever.  One remaining concern is that even if you put a tattoo on something that (from my looking-downward) viewpoint isn't shaped ideally, that won't make it any more realistic-looking.  The silk purse-sow's ear story comes to mind every single time.

I told him if I could afford it, I'd go through the latissimus surgery on the right side to become more symmetrical up front.  (Please understand, I look okay in clothes, and in profile things look fairly even, and from the medical measuring point of view, the "projection" is actually the same. But it's not going to fool anyone, and bras are shaped to fit how my lefthand side is now shaped, so there's always a pucker on the right.)  But he said right away (as my wallet breathed a sigh of relief) that he would never put me through that again unless it was medically necessary.

Fun fact: the lovely dream that once you have reconstructed breasts you don't ever wear a bra again, is pretty much a fantasy, at least as I have experienced it.  If you go without a bra for many days in a row and do any kind of strenuous moving, things start to get sore and you realize that you need support once in a while.  So you still have to buy bras, and they still have to fit.

But wait, there's more.  He started to say something and I interrupted him, hardly believing what was coming out of my mouth:  "I heard there are new implants that are shaped more realistically and can be customized, kind of like a pyramid-ical shape?"  He is used to Rod and I asking more unusual questions than the average bear, since we study hard about what's going on with me.  So he really didn't skip a beat and said that indeed, there are.

They have been in use in Europe for many years and would have been available to me in 2010 if not for the good ole' FDA and their numerous regulations to keep us safe.  (I feel neither here nor there about the FDA, but this is how he felt, clearly.)  Up until now all the implants are round (as you might notice when you see famous actresses bare-breasted and can tell "who has" and "who hasn't," and the new ones have "an anatomically shaped silhouette," to quote from the Natrelle website.  I do, in fact, have wrinkling on my skin on the right side where the contents of the round implant head mostly south (thank you, gravity); it's not only a little weird, but it's also just another daily reminder of June 28, 2010.  Between taking the medication every night and getting dressed every morning, there's still a lot of "just" in my adjusting.

At any rate, all decisions are put off while magical Marie in his office asks what the fine folks at United HealthCare think about this idea.  If we go ahead, I've promised a tattoo decision in time, and he's promised to remove (for free) a large mole dead center in my chest that I've had all my life, escaped the knife every time so far, and is (joking here) the only reason I never wear those slinky cut down to the navel dresses.  Hah!

As I said, today did not turn out how I planned, but it was good.  I think I'd better schedule the bone density scan and colonoscopy while I've still got the courage.

Yizkor - Are We Ever Too Old for This Homework?

This morning I plan to attend the Yizkor service to pay a mindful tribute to Jill Bernstein (my sister-in-law) who passed away in June from breast cancer, and to Dalia Leibowitz, my friend and a teacher in our school for over 15 years, who passed away in September from kidney cancer.  I hope to not "be" depressed, although I'm sure the service will raise depressing thoughts about not only Jill and Dalia, but also my friend Jill who died a year ago September from cancer, and my mother, who died in 2008 from lung disease. 

It's a sad service (as its name implies, Yizkor, meaning will remember, in which we are supposed to remember those who have gone) but it can be very uplifting as well.  I hope to leave it with a renewed determination to live my life in a way that makes Jill, Dalia, Jill, Mom, my grandparents, and a little boy I never met, Sam Sommer who died in December from cancer, somehow proud.  It's a huge job, and I'm not sure why we as Jews take on such an enormous "homework assignment" every day - to live like you are THE ONE who helps keep things going well here on earth while you're able.

Why would I voluntarily get all cleaned up to go to the synagogue on a day when I don't have to?  To remember, and to get a reminder about my homework. I doubt I'll get it all done by bedtime, but I hope to have many more days to polish my final draft.