Skin

I wrote this piece to submit to The Sun magazine’s Reader’s Write, published this month here.  Their loss is your gain!

When my daughter was five, she had appendicitis.  This was the first time doctors cut into her skin.  Because her surgery was done with a camera, laparoscopically, she received four tiny half-inch long scars, and a slightly longer scar just below her belly button.

She was feeling so good by the fourth day in the hospital that she wouldn’t stay in the bed any longer.  When we returned home, and the bandages came off, she reluctantly looked down to see the scar around her belly button, red and raised and angry.  Tears filled her eyes and her bottom lip quivered.

“What’s wrong?” I asked.

“My cute little belly button—it’ll never be the same,” she said.

My first instinct was to smile, because the way her belly button looked was so minor.  It wasn’t too long ago that a five year old with appendicitis would have died.  But I didn’t smile because I also wanted to cry with her.  She was right.  Her smooth, plump, perfect, little belly would never be the same.  Surgery saves lives, but it also has a cost.

Doctors have cut into my skin for twelve different procedures:  appendectomy, Mohs surgery, lumpectomy, sentinel node biopsy, bilateral mastectomy, port placement, bilateral latissimus flap breast reconstruction, implant replacement, nipple reconstruction by skin graft, port removal, bilateral salpingo-oophorectomy, and cholecystectomy.  After each surgery I watched, amazed, as skin that had once been cut by a surgeon’s scalpel knitted itself back together.

My back was sliced open so that my surgeon could free my latissimus dorsi muscles to be used to form breast mounds.  I now have two scars each as long as the span between my index finger and my pinky, one across each side of my back.  In the front, my breast mounds are marked by oblong, football-shaped scars, where that skin and muscle from my back was tunneled underneath the skin along my armpits and brought to the front, through two more cuts that were made along my mastectomy scars.  I’m thrilled that surgery has advanced so that I was able to have reconstruction.  They really look like breasts.

But at first it felt like I was wearing a bra that was too tight.  I even reached around a couple of times to unhook it before I remembered that I wasn’t actually wearing a bra.  Now, after six years, my skin doesn’t feel tight anymore.  I don’t feel much of anything.  Imagine a piece of elastic stretching from the bottom of my ribs to just under my armpits, all around my body, like a 1970’s tube top.  Underneath the elastic, I can feel some pressure, but nothing else.  Skin is supposed to provide feedback when it is touched.  But wherever there is a scar, I can’t feel anything.  There is a disconnect between what I see (hot soup just spilled onto my chest) and what I feel (nothing).

Think about how good it feels—how satisfied you are—when your back itches and someone else scratches your back thoroughly.  Or think about the comforting feeling of snuggling naked, close to someone, twined together, breasts snuggled into his chest hair?  I won’t ever feel either of those things again.

I’m happy to be alive, happy that my skin has healed.  I’m happy that, according to the best doctor’s best guess, the cells that went haywire are gone.  But I can’t feel a vast area of my body when it is touched.  That’s a loss, and I’ve had to grieve it just as you grieve any loss.

So when my daughter cried because her cute little belly button would never be the same, I just held her, and cried with her, because I knew exactly how she felt.  Surgery saved our lives, but we will never be the same.

What I’m Currently Reading: Cancer to the Holocaust to Vaginas to Linchpins

This is a new type of post, that may be a recurring feature, so tell me what you think!  I read so many different things, I thought that the juxtaposition of everything I’m reading at one time would be interesting.   (And maybe help me find connections between what I’m reading.)

Because I tend to have ADHD-type issues, I typically read several books at once.  I have an audiobook in the car, a book at the kitchen table, one in the bathroom, and usually a couple of books in progress in the bedroom.  I know that a book has really captured my attention when I take it from place to place, which doesn’t happen often.

Right now, here’s the list:

Linchpin: Are You Indispensable? by Seth Godin (I have it on both audiobook and hardcover at the moment, and I’m listening to it for the second time on audio–it’s that good.)

The Dread Disease: Cancer and Modern American Culture by James T. Patterson

The Lost: A Search for Six of Six Million by Daniel Mendelsohn

Four Souls by Louise Erdrich

Vagina:  A New Biography by Naomi Wolf

Leaving a Trace: The Art of Transforming a Life Into Stories by Alexandra Johnson

I’m really liking them all.  I wrote earlier about Seth Godin.  I’ve now subscribed to his blog and look forward to my daily dose of Seth.  Reading Linchpin and his blog has helped me to stay focused at my day job by looking at my role in a new way and has motivated me to keep going with my art.  

I’m reading Dread Disease as research for what I’m writing, to get perspective on what it would have been like to receive a cancer diagnosis in the 1940s or 1950s.  We think it sucks now, but it really sucked then, at the height of radical surgeries, newly-discovered (but not tweaked) radiation and X-ray therapy, and no chemotherapy for “insurance” to clean up any stray cancer cells.  As a rule, people, especially the poor and immigrants, didn’t trust doctors, so they often didn’t go to the doctor when they first thought something was wrong.  Most cancers weren’t diagnosed until it was far too late to do anything to affect them, and many patients weren’t even told that they had cancer.  It’s hard to reconcile that atmosphere with our “knowledge is power” world of instant access to information and what I like to call “Doctor Google.”

The Lost is an example of the kind of book I’d like to write, if maybe a little longer than I anticipate.  Mendelsohn is obsessed with finding out exactly what happened to his great-uncle and family in the Holocaust.  Amazingly, he finds out a great deal.  I really admire how he tells the story of his journey as he discovers what he is able to.  I’ve been taking my time with this one, savoring it.  It also is best read in small doses, so as not to get overwhelmed with the sadness.  But he tells a story that needed to be told.

Four Souls is another part of the story of Fleur Pillager and Nanapush, excellent Erdrich, as usual.  It connects with many of Erdrich’s other stories and is told in alternating perspectives.

Vagina is worldview-shattering, in my opinion.  I’ve tabbed many passages to quote in my book journal later, and keep saying to myself “No wonder!” as I read it.   Maybe it’s elementary, but here’s one of Wolf’s theses:  Good sex affects brain chemistry, and because women can have more orgasms than men, we have the capability to feel more of the effects of those brain chemicals.  So we (typically) feel more connected than men after sex, and it is normal for us to feel “addicted” to a lover when they’re not around, because of those same brain chemicals.  Wow!  It’s not some mental or emotional defect or result of a sexually-deprived and nerdy adolescence!

Leaving a Trace includes many promising techniques for journaling and for jumping off from a journal to more creative work.  Johnson also describes many types of journals–specifically keeping different journals for different purposes.  I already do a little of that, with my book journals, and a journal for my daughter.  But my general rambling, writing exercises, and book-brainstorming have gotten all jumbled together.  It’s food for thought to separate them more.

So those are the books that are in my head right now!  Let me know what you think.

 

Single parenting and cancer

I came across  “The difference between feeling like a single mother and being one” by Tracy Grant this week.  Michele Obama slipped during an interview and referred to herself as a “busy single mother,” then recovered, saying that when you’re married to the President, it can feel like you’re single.  Grant acknowledges that having a partner, however busy, means that you are not truly alone.  You have someone to talk with, to make decisions with, and to rely on in emergencies.  It is a different experience to truly single parent.

What got me was her statement about single parents by choice:

All I can say is “God love you.” It is a statement of faith and hope and belief in the impossible that is breathtaking. At some point, I hope your kids understand the unique pronouncement of love that their existence represents.

It made me cry.  She gets it.

She didn’t realize it, but she articulated exactly why having cancer when my daughter was not yet two years old, after I had made the deliberate decision to bring her into this world, without another parent, was the challenge of my life, and ended up changing my life.

Cancer tests your faith and hope.  Cancer tests, like nothing else, your belief that you will fulfill the implicit promise you make when your child is born that you will live to raise her and see her grow up.

While I was going through diagnosis and treatment, the only thing that comforted me was that I had already had my daughter.  I don’t know what I would have done had I been diagnosed before having her, because I felt that listening to myself in deciding to have her on my own was the only thing I had done that was true to myself, my real self.  My degrees, the jobs, the bar exams I had passed–none of that mattered.

If I hadn’t had my daughter, I think I would have felt that nothing I had ever done in my life was of any consequence.  Because when I was deciding on the kind of work I wanted to do, I wasn’t listening to my real self.  I didn’t listen to what I knew, deep down, would give my life meaning.  I sought the glamour of travel, the security of a big paycheck, and the idea that it would be easier to find a man if I was in a male-dominated industry.  None of it was right for me.

But while having her was such a comfort to me, there was the simultaneous awful heartbreak I felt for her, if I didn’t make it.  Of what her life would have been like if she had lost me before she could even remember me.  Anna Quindlen writes in Lots of Candles, Plenty of Cake:

I would look at [my kids] and think of my sister, of how she couldn’t remember how our mother sounded or looked, and say to myself, I don’t even really count for these children yet.  If I die tomorrow they will have nothing but other people’s stories where a mother ought to be.

Knowing that my daughter, who had only one parent, could possibly end up only with stories of me was impossible.  It was impossible to hold in my head at the same time the faith that single parenting requires and the reality that I had been diagnosed with cancer.

Becoming a single mother is a leap of faith.  Being diagnosed with cancer is realizing that there may not be anything to land on.  You just have to try to stay in the air as long as you can.

I’ve been in the air for eight years now, and so far, so good.  I had to rebuild that faith and hope and belief in the impossible, one bedtime snuggle, spelling list, and soothed tantrum at a time.  

And we have had many friends and family along for the journey, leaping along with us. While I’ve truly been a single mom, I’ve never been truly alone, and she wouldn’t have been either.  

It’s Just Out There for the Finding

As many of you know, I’ve been working on a book for several years now.  It has morphed from fiction to a memoir to I-don’t-know-what.  A couple of months ago, after seeing an article in Writer’s Digest on “family history memoirs,” I requested through Interlibrary loan a few of the examples the article provided and started reading.

It was a breakthrough–now I have a name for what I’m working on!

The best example of what I want to do is “Missing Lucile:  Memories of the Grandmother I Never Knew” by Elizabeth Berne.  Berne’s grandmother Lucile died when her father was only six years old, so she sets out to find out what kind of person Lucile was, to reclaim her for her father.  Another great example I am aspiring to is “Ava’s Man” by Rick Bragg.  He re-creates the grandfather he never met through stories he’s heard from the family and historical research.

I have had bits and pieces of knowledge about my grandmother Ida, who died when my father was 12 years old.  But I’ve recently found a wealth of information through many sources:

• I spoke with my great-aunt, Ida’s sister, about family stories and names I didn’t know.  She gave me a ton of great stories–for example, I didn’t know my grandmother was a lefty!
• Ancestry.com has the 1940 Census free and indexed by name.  You can find out the address where someone lived, their occupation, years of school, how many people lived in the household, where they were born, and whether they lived in the same place in 1935.  I can actually go to the house my grandparents lived in 1940, because Google Maps (and Street View) show there’s a house still there, and it appears to be old enough.  It’s in a town only about an hour away from where I live.  Their relatives lived blocks away or around the corner.
• The Indiana State Library, which is located between where I work and where I park, and accessible two elevator rides away from my desk, has on microfilm just about every newspaper from every town in the state.  I have heard that my grandparents met at a carnival (he was a carney and she ran off with him) so I wanted to look for ads or newspaper articles from 1933 to see if I could find any information about the carnival.  I haven’t found mention of a carnival yet, but I did find her name on a graduation list, honor roll, a description of the senior play she was in (and the part she played), graduation activities, and an ad for her uncle’s shoe repair shop in the same town!

So my new goal is to take a couple-hour lunch once a week just to do research in the State Library.  I’m so excited that I seem to be making progress on this work, and it’s in a direction that feels right.

Health at Every Size: Breast Reconstruction, Weight Training, and Rock Climbing

If you’ve been lucky enough to never deal with it, you would be amazed at the options and choices there are when it comes to breast reconstruction.  

In 2006, I had latissimus dorsi (LD) flap reconstruction with implants.  Here is a good description of it.  It may seem strange (even Frankenstein-ish) to deliberately take perfectly good skin and muscle from your back and stitch it to the front, but when you’ve existed without breasts at all for a year, the surgery is miraculous.

But there are drawbacks.  I remember reading before the surgery that, if you do rock climbing, an LD flap might not be right for you.  Maybe in the back of my mind I took this bit of information as a challenge.

in 2011, a new YMCA opened near our house.  I had been wanting to get back to weight training–I had done it consistently in my 20′s, but then life got in the way and I was lucky to do some water aerobics or walking on a semi-regular basis.  I remembered how good it made me feel, and I wanted to feel that way again.

I emailed my plastic surgeon to ask whether I had any limitations on weight training because of the surgery.  He told me that because the LD muscle was completely detached, there was no need to exercise it specifically, but that it would be a good idea to strengthen my shoulders.  He said that I had no limitations.

So off I went to meet with a fitness counselor and get back to it.  I found that once a week was barely enough to maintain whatever muscular strength I was building, but if I went twice a week, I could improve slowly.

A year passed, and I was still going–weight training and some cardio.  I loved it.  I was doing 11 stations, and lifting a total of 15,000 pounds, then 16,000, and more and more. (I’m now up to about 20,500 pounds each time.)

There’s a climbing wall at our Y, so I started asking my daughter if she wanted to rock climb, as a reward for going to the child watch while I worked out.  She liked it, but seemed to get stuck at the same spot about 2/3 of the way up the wall.  I had tried rock climbing with her a couple of years before, when I wasn’t working out, and I could hardly pull myself up onto the first peg.  It was a humbling experience.  But I started thinking that maybe if I tried it too, she would be pushed to go further so that she could beat mama at something.

The wellness center with the cardio machines shares a window with the rock wall, and one day, while I was on the treadmill, I saw that no one was on the wall.  My heart raced–here was my chance!  My daughter was in child watch, so she couldn’t laugh at me if I couldn’t do it, and no one else would be looking.  Now would be the perfect time to try it!  I even finished my treadmill workout without a cooldown because I wanted to make sure no one got in front of me, and rushed to the rock wall.

I told Ryan, the belay-er, that I wanted to try it.  (He’s the person on the ground who also wears a harness, pulls the slack in the rope as the climber climbs, and then lets them down slowly when they’re ready to come down.)  He showed me how to put on the harness, and told me that I was just like every other parent who tries rock climbing–most are walking really fast and have big smiles on their faces when they try it when their kids aren’t watching.  He told me that I shouldn’t worry about other people being there and should try it if I wanted to.

I made sure he knew how much I weighed, in case he needed to hook onto the stabilizer ring on the floor, because I was certain I weighed more than him.  The last thing I wanted was for me to fall and pull him up off of the ground!  He assured me that “he could handle me.”

He showed me how to hold my foot to climb onto the lowest peg, and up I went.  I could actually do it!  Amazing! I didn’t get very far that first time–only 4 or 5 feet.

I realized that the hardest part wasn’t climbing up.  For me, it was letting go, dangling way above everyone’s heads.  That’s a metaphor for another post.   Watch the video–no matter how many times I do it, I still don’t want to let go of that wall!

We go rock climbing most Saturdays now.  Neither of us has made it to the top yet, but we’re about three-fourths of the way up, and we keep trying.  As I expected, my daughter has pushed past the place she used to get stuck so that she stays ahead of me.

it’s often crowded, with tiny kids (who regularly get to the top) waiting for their turn, and I do feel a little funny trying to ease the harness over my belly (the harnesses are one size, of course) and knowing everyone on the ground is watching.  But I remind myself that I have just as much a right to rock climb as they do, and who knows, maybe someone walking by in the hallway, or a parent waiting with their child will think–wow, I’ve never seen someone her size rock climb before.  If she can do it, maybe I can do it too.  I refuse to let the thought of what anyone else thinks limit something I want to do.

And when I come down, no matter how far I’ve climbed, I still feel like I can do anything.  it’s addictive.  How often do you do something that makes you feel that way?

 

Exercise: The Benefit I Gained by Proving Someone Wrong

I’ve been thinking for a long time about writing a post about going to the gym and exercising, both from the size acceptance perspective and the cancer survivor perspective.   There is so much that I want to say about it, I almost don’t know where to start.  So I’ll just start at the beginning.

I didn’t give exercise much thought after I survived the required P.E. classes in high school and college.  

Until I was living in California in the very early 1990s.  My employer had made available a free one-month membership to a gym a couple of buildings over, and several other people in the office were taking advantage of it.  One day, I mentioned that maybe I would try it out.

“That would be a waste–you’ll never use it anyway.”  So thought a blonde, native Californian surfer-dude whose name I have conveniently forgotten.

I said something like “We’ll see–maybe I will.” (I’ve never been able to do an effective quick retort–I always think of the good things I could have said hours or days later.)

I joined the gym, met with a personal trainer, and started to go to water aerobics classes after work.  Soon I was walking on a treadmill and doing weight training.  I was surprised at how much I loved the weight machines.  Then I was walking 3 or 4 miles after work down the beach to get to the mall.  I tried skiing, hiking, karate, and camping.  Once I hiked 7 miles around a lake south of Oakland, all by myself, in an afternoon.

I think I probably did lose weight.  But I wasn’t tracking it, because I had already embraced size acceptance.  What I knew was that I felt great, and I was able to rely on my body to do things–somewhat strenuous things like long walks and hikes.  Maybe I wasn’t a runner, and would never be thin, but I could get strong and move 55-gallon drums at work.  (Yes, that was a part of my job description.)

I only lived in California for nine months, but, by sticking with the gym during that time and finding movement I enjoyed, I learned that you don’t have to be fit to exercise and enjoy it.  You don’t have to think of it as punishment for eating badly, or as something you have to endure.  If you’re not having fun, find some kind of movement you can have fun with.

I also learned that it is sweet to prove someone wrong, especially when they underestimate you because of your size!

Genetics: I Wonder

I just came across this article today, titled “Blue Eyed Humans Have a Single, Common Ancestor.”  I wonder about that person–if everyone that anyone knew had brown eyes, what did they make of his or her blue ones?  Was he or she treated as a freak?  As a holy person?  As just another person, but with pale eyes? Obviously he or she procreated, and so couldn’t have been a complete outcast.  What did having blue eyes mean to him or her?

Genetics have always been interesting to me–I remember learning about Mendel and recessive and dominant genes in grade school and trying to figure out the chart for my family.  My parents both have hazel eyes, and of the four of us kids, there were two brown-eyed and two blue-eyed.  It was fascinating how things got shuffled up with each of us–we were and are, all similar, but different.

Genetics became even more interesting when I found out that I carry one of the gene mutations that predisposed me to breast and ovarian cancer.  I have been obsessed for years with thinking of my grandmother, Ida, who had breast cancer but died when she was 41 and my father was only 12.  She mixed up the gene pool by choosing someone completely out of her family’s comfort zone.  She was the daughter of Jewish immigrants from Russia/ Lithuania, who came here with the great wave around the turn of the 20th century, and my grandfather’s family had come to America in the 1700s (we think).  It was an unusual match in the 1930s, and I’ve long wondered about the situation.  

But it’s certain that the cancer mutation came from her family.  After talking with my great-aunt a couple of weeks ago, to hear stories of the family that I’d never heard before, it seems that the cancer mutation must have come from my great-grandfather’s side–the Meyers–because she said that almost everyone in that family died of some kind of cancer.

What did having the genetic mutation mean to those that had it, generations ago?  Of course they didn’t know about it, specifically.  But they had to see the women in the family live to bear children, then die young, possibly before the children were grown.  Was that just the way things were to them?  Like meeting the only blue-eyed person anyone in the world had ever seen?   Were disease and death so common that they didn’t even notice it?  Did they feel like their bodies were ticking time bombs?  Or did they just not have the time to think about it?

I wonder.