Monday, March 26, 2012

Think Small

This recovery period I'm stuck in has brought many challenges.  One of them being that because I have high expectations for myself, I tend to get slightly disappointed when I am unable to meet them.

However.  Tonight, I cooked the 13th meal from Pinterest.  Lucky number 13.

Behold:  Roasted Red Pepper and Goat Cheese Alfredo.  I made a few adjustments (substituted MimicCreme - unsweetened almond and cashew cream - for fat free half and half, and buckwheat soba noodles instead of plain pasta), and Dan was prepared to lick the pot.

It felt so gourmet and fancy, but was pretty durn easy to prepare.  Nothing like a successful dinner to boost the spirits.

PS.  At first bite, Judah declared it delicious.  As soon as he heard what made the sauce such a gorgeous color, he proceeded to request Alternate Dinner #1.

PPS.  If you are intrigued by my incredulous food photography skills and are interested in checking out even more food porn, Pinterest is the place.  If you also need an invite, just say the word in the comments section or email me.  I am more than happy to oblige.

Wednesday, March 21, 2012


photo source
Don't mind me, I'm about to have myself a little rant.  Today's topic:  LUCK.  Timing, genetics, socioeconomic class, gender, race, career, housing, health... it's all a matter of luck.  And anyone who tries to tell me differently (today) is going to get a mouthful in return.

I had a dream last night that a friend offered to buy us a house.  This is a wealthy friend, a kind friend, and perhaps a generous friend?  In the dream, she felt that Dan and I were working so hard and had been dealt a bad hand, she wanted to help (plus, purchasing a house in the Philly burbs didn't make a dent in her family's bank account).  I woke up wishing for a sponsor.

This fantasy led me back to a comment another friend (let's call her Chrysanthemum) made to explain another friend's (let's call her Daffodil) acquiring a lovely new home.

Me:  Wow, Daffodil's new place is really great!  They got so lucky.
Chrysanthemum:  No, it wasn't luck.  They worked really hard.

Me (now, 4 months later, thinking): That's total CRAP!  We worked really hard, too.  And we were/are down in the trenches every single day, helping other people's children.  We work jobs with pride and love and compassion and we SURE DO WORK HARD.  But since education is grossly undervalued, and teachers grossly underpaid, we don't earn millions of dollars every year.  And that lack of funds leads to stress about paying for what we do have and worry about how to afford what we lack.

My beef today isn't even about money though.  It's more about the fact that so so many of life's determining factors are out of our control before we're even born.  Take Paris Hilton for example, or someone like Kim Kardashian.  Neither of these girls has worked hard a day in their lives.  They were born into wealthy families, with excellent bone structure and a love of the camera.

The most obvious dependent-on-luck factor is health.  You can make every possible healthy choice known to science and even then, your cells can poop out on you.  Working hard makes for good ethics, high productivity, and potentially even prosperity.  But it doesn't account for luck.  I don't wish bad luck on "Chrysanthemum" (I've heard she's experiencing some of her own at the moment), but I do wish for a little change of perspective.

Hmm...  I wonder, if perhaps a trip to visit one of my families' homes in North Philadelphia might do the trick.  I visited with a baby today (a 9 month old, born 10 weeks premature) whose mother is having her 4th child via c-section next week.  There are no fewer than 10 children (and counting) living in the house and I won't go into details about the physical conditions.  Use your imagination.

How about this new baby that's about to enter the world?  What luck has already been bestowed upon him/her?  I wonder if, by working hard, s/he will be able to learn to communicate with spoken language?  Or perhaps to do basic computation?  To land a minimum wage job?  To eat a fresh vegetable?  Are these attributed to hard work?

Don't misunderstand.  Many of us fortunate enough to have been born into families who valued education, spoken and written language, and who passed along a love of learning, did and do work hard.  Through school, college, first and subsequent jobs, we attended, studied, completed tasks presented, and felt good about our deeds.  But in order to get to a place of deed doing, someone was there behind us, setting an example, and prodding us to hang up the phone, eat a good breakfast, clean up after yourself, be polite.

It could've been me (or you) born into a house overrun by half-dressed, hungry children, growing up in a neighborhood where it's too dangerous to play on the sidewalk out front.  What luck.

Aah.  That's a little better.  Thanks for tuning in for Whiny Wednesday.


Still on my vacay from Facebook (24 hours and counting), I am on the prowl for some inner quiet - some relief of the guilt and (illogical) shame I tend to place on my own shoulders.  My mom sent me a link to a challenge our Rabbi wrote about on his tumblr:

"From computers to smart phones to iPads, these devices have much to offer us, but they can often overwhelm our ability to quiet ourselves and find peace." - Rabbi Adam Zeff

I think I'm gonna give his unplugging thing a try.  This Shabbat (Sabbath/Saturday for me), I'm going device-free.  It will be difficult, to intentionally not check email or fool around on Pinterest (how will I pass the time while Judah is having his swim lesson?).  But I like the idea of reconnecting with people, making actual eye contact, and enjoying the company of others.

Are you game?

Tuesday, March 20, 2012


a real vacation

My therapist prescribed a break from Facebook for me.  If you ask me, a real vacation (perhaps back to the home of the locally grown pineapple) would probably be more helpful.  Since we haven't been able to win another contest yet, this will have to do:  a break from the place where everyone puts their best face forward.   

As writer Deborah Dunham puts it,  "It’s not that Facebook itself is harmful–just like PE class wasn’t harmful, but it provides a place for people to indulge in self-destructive behavior, such as showcasing their own weaknesses or comparing their lives to others."

I go through this every few months.  For someone like me (who is working part time), and by "like me", I mean who likes to pile on guilt and self-blame for all of the imperfections in her life, it's easy to keep subjecting oneself to such self-destructive behavior under the guise of staying connected.  Those of you who are actually friends will come to visit here, email, and perhaps we'll actually get together IRL (in real life).  Luckily, I can hang out in this little corner of the internet.  There's plenty of space for all of us, don't you think?

*I certainly don't want to offend anyone, simply enacting a bit of self-preservation.

Gotta keep busy.  Three days a week, I am busy with my new students:  toddlers and families in Philadelphia.  I conduct home visits and provide Early Intervention services for children who show all types of developmental delays (but usually communicative).  It's very, um, interesting. On one hand, I love developing relationships with people and watching these kids grow and learn.  Been doing that for years.  On the other hand, I never did it in their homes before.  Some homes are great - books and thoughtful toys chosen and ready for the playing.  Other homes are just so sad.  Just so, so sad.  

And so I feel that what I'm doing is meaningful, and I hope (fingers crossed) it's productive.  It's not the same as working with a room full of 8 year olds, but these kids present puzzles to solve.  Probably not a forever job, but  a good solution for this recovery era.

If you have any longer term leads, feel free to let me know...

Thursday, March 15, 2012

HAIRY situation

Hair is such a dramatic symbol in the cancer world.  It separates many of the haves from the have-nots.  It starts out as simply an unnecessary accessory that (we tell ourselves) is sure to grow back.  In the grand scheme of things, hair is not a high priority.

But then it becomes a measure of success, of health and prosperity.  Bald is beautiful, except it doesn't always feel so pretty when you don't choose it.

We all crave normalcy - not being average, but feeling as though we belong, a sense of security in the known-ness of our lives.  Losing your hair (and I do mean ALL of your hair) as a side effect is more powerful than you might think.  Your mental state is greatly affected by your appearance (ever watched What Not To Wear?), and having to see yourself looking so dramatically different has the power to make you feel dramatically different.  Bottom line:  similar to most of cancer's side effects, it sucks.

I had assumed, during treatment, that when I was finished and declared in remission that I would grow my hair out, and in another year, things would all be back to normal.  I remember seeing all different aspects of my life this way (at the time): once the cancer was gone, so would the cancer experience die with it.  I asked my oncologist repeatedly, "when can we start trying to conceive again?"  And his response was always the same, "the day you finish radiation.  go home, have a glass of wine and enjoy."

But then that day came.  And life was so uncertain, I suddenly realized, there was no safe way to get pregnant that quickly.

How could I have a scan to tell me I'm cancer free?  (I couldn't)

How much more complicated could my health become if I start having symptoms again while pregnant? (very)

What if, (heaven forbid) I relapsed during pregnancy and was forced to endure treatment?  (according to my onc, patients treated with chemo during 2nd and 3rd trimesters do fine and the babies are no worse for the wear - how the heck is that possible??).

All too scary.

And growing my hair or making any plans for the future is the same.  What if it grows and grows and then I relapse and have to lose it all over again?  (think PTSD)  Thus, it took a good 6 months after treatment for me to be willing to let my hair grow.  In a coincidental twist of events, it actually took my hairdresser being on maternity leave for me to stop cutting it.

I remember reading an article many months ago (that I cannot for the life of me locate).  The author described needing courage to grow out your hair, courage to do something that *may* be all for nought.  Not everyone agrees.   Dana Jennings says, "In letting my hair grow, I’m acknowledging to the world that I’m finally emerging from the life-changing chrysalis of cancer. It’s a gesture of optimism, a way to define — and refine — my postcancer self."

I bounce back and forth.  My hair has definitely grown since last year.  As my hairdresser (now returned from her leave) says, I have a "shitload" of hair.  It's thick and dark and has many more cowlicks than pre-chemo.  But I do not complain about it for one second.  This hair keeps my head warm.  And it gives me the appearance of someone who is not a cancer patient.  Perhaps that's the strangest juxtaposition for me:  looking (mostly) normal on the outside, but feeling so changed, permanently scarred on the inside.

Yesterday was my official 1 year cancerversary.  One year ago today, I heard the words from both my radiation oncologist and my onc's NP:  "looks good," and "home run".   I was fresh from a massage and in the parking lot of the grocery store, a moment of pure relief and oxygen.  Today, my attitude is a mixed bag.  By george, I am happy to be alive.  Still staring at a blinking yellow light: proceed (with caution).  

Wednesday, March 7, 2012

Healing a Heart

me, slightly sweaty and very hungry after all the waiting, plans in hand
Today was my much anticipated appointment with a one very special cardiac electrophysiologist at Penn, described to me as The Best in The World.  It took only 7 weeks of waiting (and apparently 2 additional hours in the exam room) before I got to hear the plan according to the true expert.

He explained my problems to me in simple terms and likened my tricky cardiac condition to a thermostat stuck on high.  Apparently, I am a bit of a drama queen - strictly biologically speaking - and my parts are overreacting to everyday stresses.  We are going to attempt to fine tune the meds (which means working up to taking a crumb of a pill a few times daily, combined with baby aspirin for the residual heart inflammation), while aggressively hydrating and salting up a storm.  He said some very hopeful things about me being able to re-train my heart (to behave normally again) and improve my quality of life.  It was quite reassuring to hear from a doctor who didn't a)call me a challenge to medical science or b)make me feel like there were no options out there for a girl who can't tolerate the starting dose of pretty much any drug in the pharmacy.

Unbeknownst to me, our appointment was something of an audition for me - which I passed and was invited for a follow-up visit!  Yesssss.

I'm feeling hopeful this evening, after being reassured that I'm not predicted to die any time soon (still feels touch and go to me), and hearing that my heart CAN heal.  The timing on this turn of events is curious, as we are approaching my first official cancerversary (anniversary of the remission scan).  Let the healing go on.

PS. Major congratulations to a fellow PMLBC (primary mediastinal large b cell non-hodgkin's lymphoma) survivor on achieving complete remission today after not one but TWO stem cell transplants!

Saturday, March 3, 2012

Pat on the Back

Yesterday, I was a clutz.  After an ever so relaxing acupuncture treatment, I drove to pick up some lunch at the Co-op, where the prepared foods section entices me from blocks away.

After snagging a prime spot on busy Germantown Ave., I got out and promptly closed the car door on my leg.  I managed to gash out a chunk of my shin, but I limped across the street anyway, where the tofu Tom kha gai soup distracted me enough to put off the pain.

Later that evening, at my parents' house for dinner, I asked Judah to get me a band-aid (the first one having lost its stickiness since I kept checking on the cut).  He marched back proudly from the kitchen with the box of Toy Story band-aids, eager to help.  Not surprisingly, he asked if he could have one, too.  I told him to save them for when he actually needed one, otherwise there wouldn't be any left for a real cut.  His response threw me for a loop.

(disgruntled) "Aw, man.  Not fair.  I liked it when you were bald.  We had the matching pirate scarves."

I'm sorry, what now?  When I was bald, you say?  You (ahem) LIKED this??

And it's here where I pause for the proverbial pat on the back.  Apparently this kid had no freaking clue what was going on when I was wearing pirate scarves.  And he's no worse for the wear, if he's longing for the days when we wore them together.

I am continually amazed at the ability of this child to have carried me (us, really) through such an intense test of wills, and come out the other side a bright, happy, curious and compassionate little boy.  Can't credit our parenting skills entirely, I suppose genes and luck have something to do with it also.  We got really really really really lucky.

To whomever is responsible for this match-up, I give thanks to you.