Tuesday, September 30, 2014

Days Like Today

So, I'm in school and instead of guest artist, we are doing a call-a-thon to kick off Breast Cancer Awareness Month. We, as a school, are raising funds for #pinkoutloud, and I'm calling folks in my phone in alphabetical order.

As I'm online with my friend, Lisa (who is still filed under "B," and half and hour after I thanked my peers in advance on behalf of us survivors and my sisters whose time ran out, keeping Mary Caprio in my mind, whose name do I see next in my contacts but Mary's. 

Lisa can tell you, I couldn't even make it through the call. I can barely make it through typing this note. I'm flooded, yet again, with why me - by why did I get cancer, but why did I survive? Why did Mary, and Suzy and Tiffany and so many others die? How does this make sense? My doctor says I'm in the clear, but for how long?

How many more of my beautiful friends will have to suffer and ensure surgery after surgery, chemo and radiation? And how many after that will still die?

How many more of my nearly 100 young, thriving classmates here at Paul Mitchell hear those words?

I looked at so many of their faces today, and after that call, all I think about is, "Will it be her? Will it be her?"

I can't even bear to be in the building right now because I feel like a pink Grim Reaper, trying not to look them in the eyes looking for a sign, a hint as to who will be the next one. 

One of those days.

Tuesday, August 12, 2014


Chemo is a bitch. Depression is too. For me, now, they have one common thread. Robin Williams.

I was a little kid when I used to watch "Happy Days." And I remember watching an episode where the Fonz was being antagonized by this weird alien named Mork. Soon after, I was mesmerized by television show about an alien and this woman that he lived with. And I would sit, crosslegged with jeans, rainbow suspenders, and a plaid shirt, hanging on every moment of this crazy show. I greeted people, with my fingers spread, saying, "Nanu Nanu." I still have those rainbow suspenders. And I still remember watching every moment, waiting for the end when Mork would be talking back to his home planet, giving them the observations and words of wisdom that he gathered.

I couldn't believe that this alien that came out of an egg was the same man speaking fluent Russian that defected in the middle of a department store. A teacher inspiring his students to deliver a giant, "Yawp." Or that he became a doctor helping children with cancer with laughter with one of my college classmates in the cast. Or a doctor that could awaken people from trance like states, and then break as they returned to their previous conditions. I never imagined that somebody so hairy and so crazy could transform into a proper British woman. 

Above all else, this man made me laugh. And it wasn't because of fart jokes, it wasn't because of anything accidental. He was so smart. The breadth of the resources that the man had in his brain from which he could pull was astounding. One of my classmates recently labeled me as being "intellectual." But the brilliance of Robin Williams with that he could make children laugh using references, information and comedy that was based on such highly intellectual subjects that it boggles the mind. His comedy was intelligent. It made you want to learn more about what he was referencing. But at the same time, you really didn't give a crap, because your eyes were tearing, your stomach was seizing, and you might just have peed a little.

September 29, 2011. First chemo. I was scared out of my mind. I sent my kids to school, and my dad came to pick me up. I was putting together my chemo bag. A friend told me I must bring an iPod, so I had that packed. And DVDs. I had "Princess Bride" and "Wizard of Oz." But those didn't feel like enough. I then remembered my Robin Williams Live DVD. I hadn't watched it yet, so I grabbed that. Thinking of Mork, I chose my rainbow socks, an homage to Mork's rainbow suspenders. A little bit of in innocent childhood joy to brighten my mood.

When my dad and I got there, we were cracking jokes, and giggling. But it wasn't because anything was funny. It was awkward. It was forced. I think we both felt like if we didn't make each other laugh, the alternative would be too unbearable for the other to witness. That's why my mother couldn't come. I didn't want her to, and I don't think she could have handled it. She takes too much too seriously to just let it go, even for a moment, and laugh. I wish she would learn to do that. To laugh at the worst of things. To let go of things out of our control. I always thought she'd lead a happier life.

But my dad, aside from just being funny, was always able to laugh at anything. Perhaps that's why he loved Robin Williams. He is intelligent, raucous, a little bit of a fart joker, but brilliant.

So, when we finally got the DVD player working, we put in Robin Williams. And we laughed. We laughed from the bottom of our feet to the hairs on our heads (as short lived as they were). We laughed loudly enough that nurses came in to see what was going on - belly laughing and guffawing are not common for a chemo room. Then, when they saw what was happening, they stayed. And laughed with us. Throughout that day's treatment, our nurse, Clarissa, and her colleagues popped in for relief. Before I knew it, chemo was done. My veins weren't sore, my stomach was. The tears streaming down my face were of joy and exhilaration, not of pain or sorrow.

Particularly funny was his bit on Lance and cancer. Perhaps it was because I had just met Lance, or was meeting him again in a few days, or because we now shared cancer and chemo as well as bikes, but it was like Robin was saying outloud all the snarky things I would never dare say, and he made it ok to think. 

My kids had the chance to see him live at the LIVESTRONG 15 Celebration. Thank goodness.

The thing with Robin Williams is that he gave us a vocabulary to laugh at cancer. Maybe that's why so many of us at LIVESTRONG feel so connected to him, aside from his friendship with Lance, his involvement with the organization, and the fact that he rode with us. Robin gave us the wherewithall to laugh at cancer. To laugh in cancer's face. He helped us find the absurdity of the situation. He helped us face death and laugh. Not spitefully, but with joy - unabashed joy.

I am devastated at his loss. I am saddened to the core. The world has lost a bright, brilliant star that was too smart, too funny, too emotionally connected for this world. 

Perhaps that was his greatest gift next to his laughter - his ability to connect and feel what others were feeling. 

As we said at my friend Ari's funeral, who died of a heart attack due to a congenital heart disease,his heart was too big for his own good. He felt too much. Which was his blessing and a curse.

"You're only given one little spark of madness. You mustn't lose it."

Friday, May 16, 2014

180 Degrees

You may or may not know this, but I have a career outside of being a cancer fighter. I started as an executive assistant and working my way up to being a project manager. The position sounds very impressive and important, and it is. And I gave it my all, and I was pretty good at it, but in my heart, no matter how hard I tried, and I tried, something was missing.

Over the years, I found all kinds of outlets - from my Mary Kay business to painting to sewing to DIY - you name it. But the reality is that my passion always lay in the creative realm, not the corporate realm.

Perhaps it is a closer-to-midlife-than-I'd-like-to-admit crisis, or a post-Cancer epiphany, but I decided after much debate to abandon my corporate life and go into a completely different direction.

I am a full-time student at the Paul Mitchell School of Danbury. I'm biting the bullet, getting my cosmetology license and seeing where I take it.

Wish me luck!

Tuesday, April 8, 2014

Aunt Carol

When one thinks of the typical family, and you begin to picture what an "aunt" looks like, one might picture floral couches, a female version of your father, with a similar lifestyle. Or a kooky, eccentric version of your parent. For my generation, your father's older sister might bring up images of a lady, wearing dresses, gardening, etc.

As a child, when I would talk with classmates about my visits to Aunt Carol's house, I'd describe the barbeque Uncle Elliot would make, how my parents would joke and tease that the meat was overcooked, though I liked it, playing with some of the other nieces and nephews in the backyard - wiffle ball was a favorite, with one of my golden retriever cousins chasing the ball, and Aunt Carol's strawberry rhubarb pies made with rhubarb grown in her own garden.

And then I would talk about the piece she had made that was a collage of homemade paper, string, rusty wires and her dog's tooth that looked like a shriveled human heart. Or the sky-high black paper sails she constructed made out of her homemade paper. Or the frustration my father felt when he learned she had cut apart original family photographs again for a collage. Or the trip to NYC to the art gallery to see her uncharacteristically sleek sculpture that looked like a pyramid with geometric shapes hollowed into it, but were really painted illusions.

My Aunt Carol was an artist. She was a contemporary artist. She was talented beyond description. She had an obsession with morbidity that I dug as early as I can remember. And my father was oblivious to said obsession until, not that long ago, I asked Aunt Carol why she was obsessed with death, and my dad said, "No, she's not," and Aunt Carol and I answered, "Yes, she (I) is (am)," in unison.

15 years ago or so, Aunt Carol survived breast cancer. I thought she was amazing.

Aunt Carol and Uncle Elliot didn't have any children of their own. Instead, they had golden retrievers. One at a time. They were my cousins. It isn't that they didn't like children - they did - from afar. But Aunt Carol seemed to dig me. I was a child just like any other, but being around her and Uncle Elliot, and around her work, I somehow instinctively connected and "knew my place." Immaturity was left at the end of the driveway after the long drive down to Califon. My parents never had to remind me to "be on my best behavior." I didn't have to be told.

"Colonial elegance" comes to mind when trying to describe their home. I imagine their home is what it would be like if an artist living in SoHo inherited their grandmother's fully-furnished farmhouse and decided to move in. From the exterior, it's a charming, red country home, with a stepped garden. And when you enter, at first, it looks like a dark, wooden framed farm home as one would expect to find in Califon. But as you venture further in, behind the quaint, cushy "aunt-like" sofa, hangs the earlier mentioned collage reminiscent of a human heart, with hairs woven into the paper cluster. In the dining room, with an innocently patterned wall paper, sits a bassinet, an antique bassinet that has an eerie look about it. It looks too antique to be "normal."

Climbing the staircase by the innocent yellow guest bathroom, you would expect to walk into a storage room. Instead, usually at the end of our visits, Aunt Carol would lead me and my father into her vast, white studio, to show us her latest pieces - finished and in process. Aunt Carol, for some time, would have to get regular tetanus shots, as her work led her to local dumpsites to retrieve the heaviest, rustiest, gnarliest pieces of wire and metal. She and Uncle Elliot had to have the side of her studio above the garage cut open, and have barn doors and a hoist installed because Aunt Carol's art drove her to construct work that was simply impossible to get out of the house without the need of serious equipment and being hauled out of the side of the house.

Of course, she and my father were Jewish, and I recall them coming to a seder once, but she and Uncle Elliot weren't "overtly" Jewish in their presentation. I honestly don't know what their worship or observance was like, and while they had travelled all over the world, it wasn't until after I'd visited Israel for the last time that they went to Israel. This surprised me, as my father, mother and I had gone multiple times. But I would tell Aunt Carol all the time to go. When she surprised me with sending spending money while I was there, I wrote her letters and postcards about what she was missing.

So imagine my surprise when I learned that her last major collection, which started several years ago, was centered around the Holocaust. She began with collages, which led into collections of poetry and her pieces and she created art books - some of which are now housed at the world's most renowned Holocaust museums, including Yad VaShem. Those pieces then led to stone engravings, where she had to engage tombstone makers to be able to etch her work into the stone.

I facepalmed myself when I heard she decided to bring one of the artbooks and lecture at Oberlin College - after I'd graduated, and after the fact! I called her and said, "Aunt Carol! Why didn't you tell me! I'd have visited campus!" and she replied, "It wasn't that big a deal. No biggie."

But that was typical of Aunt Carol. Nothing ever seemed to phase her. She had a reserve about her. She wasn't uptight in the least- she was very relaxed. You knew you were speaking to a lady, so she wasn't crass, but she was relaxed. Aunt Carol had a lovely laugh and sweet voice, when you were blessed to see that break in her usual friendly, but poised conversation.

My dad brought that out in her the most. Dad could bring that childlike twinkle to her eye. He could make her giggle. I don't even know if he meant to do that. Being her younger brother, it was natural. Underneath the grey-speckled bangs, was the face of a 12-year old observing her goofy, baby brother. I even witnessed the occasional eyeroll as she would say, "Oh, Richard."

I loved my Aunt Carol. Seeing her was such a treat. She was so uber cool. I remember, when I was more actively studying art in high school, she kept pestering Dad to take me to the Guggenheim. My dad isn't exactly a big modern art buff, a trait she couldn't tolerate. We'd go to see her joint exhibits, and we spent half the time teasing the work of her peers (quietly, of course. I thought it was for my benefit, but looking back, it was likely to ensure Aunt Carol didn't scold him later). Finally, Dad gave in, and we went to the Guggenheim. In retrospect, we probably should have looked up who the featured artist was, because, let me tell you, it was an exhibit that embodied everything he and I loathed about contemporary art. Just approaching the Guggenheim, the taxidermied reptile and neon lights sketching out the Fibonacci series along the side of the building prompted us to stop, stare blankly, look at each other, and bust out laughing. Aunt Carol would have been utterly horrified and beside herself had she been a fly on the wall as my father and I cracked jokes about how stupid the stuffed desert critters with florescent numbers shooting out of their butts were, with the crowning jewels of the exhibit being a faucet stuck into a wall called "Mother" and a room full of huge wire igloo-domes made out of what looked like sheets of earwax and dripping snot.

While my father and I probably never laughed so hard for so long, my Aunt Carol was not amused when we recounted the day over the phone. I know I heard her yell, "Richard!" a few times over the phone while she gave my dad an earful. Hence, when I got the phone, I feigned interest and waxed philosophical with her, impressing her with my maturity, while I stuck my tongue out at my dad.

I suspect that's why Aunt Carol seemed to like me, even though I was a kid. I knew how not to act like one around her - sometimes, even at my father's expense.

There is nothing twinkling, or charming about today, though. Early this morning, around 6:15, I had a sinking feeling in my heart. I posted on Facebook for friends to pray for Aunt Carol, as last night I learned she only had days left in her battle against pancreatic cancer. I was just about to start baking cookies and cakes for her (if she could eat - which she couldn't on Sunday when my parents went to visit), my Uncle Elliot, and my parents. The phone rang, just as my daughter went to catch her bus. I knew. I knew that I wasn't going to Califon today. And, just hearing my father's voice, he didn't have to say a thing. I knew.

Aunt Carol ran out of time today.

There will never be a slice of her rhubarb pies anymore. I'll never hear stories about what my father was like as a kid, and the trouble he'd get into with his Aunt Bettina. I'll never have the chance to collaborate on a piece with her, and my daughter. My daughter, who only met her once this past year, who fell in love with her, will never develop the relationship she wanted with my aunt. She'll never have the chance to share artwork she did based on photographs Aunt Carol sent her with her mentor. I'll never be able to ask her why she was so obsessed with death, and how she made her paper. She'll never smile when I present her with another candy mold to add to her collection.

And I'll never see the twinkle in her eye, and her smile again.

But now, I have to see my father, who lost his big sister. Whose only blood relatives, other than me and the kids, are now gone. I'll have to see a man who turned into a boy whenever he was in her presence, and I'm terrified of seeing the loss in his eyes. I fear the twinkle that they both shared will be dimmer now. My heart aches for a man that I love so much and I cannot imagine what he's feeling right now.

And then I think about my Uncle Elliot. He's alone in that house that he built with Aunt Carol with my latest golden retriever cousin. He had to watch her fade. He's so far away, we can't just stop in and bring him muffins, or check in, or spend time with him with ease. He spent so many years with her - how is he going to be?

My only consolation is that I know the past few weeks were so unpleasant for her. At last, she's at peace.

Pray that the rest of us can find peace in her passing, now. Pray for my father. For my Uncle Elliot.

Gosh, I'll miss her strawberry rhubarb pie.

To view her work, please go to http://carolrosen.net/

Monday, March 24, 2014

That which won't kill me can only make me STRONGER...

Ugh. Kanye West. What a loathsome individual. G-d complex. Caused a Kardashian (and not the uber-cool Khloe) to reproduce. Vile geopolitical opinions.

But... If the man has one salvageable action in his life, it's releasing the song, "Stronger." 

Monday morning. Stuck behind cars, rushing to get to the YMCA in New Canaan, I revel in the fact that I found my Sony Walkman (thank you, Klout) - already loaded with workout music I hand picked from my Riding playlist with some new additions (thanks to a binge in Israeli, Mizrachit and Ladino dock), ready to attack my LIVESTRONG at the Y programs and, mindful of traffic law, pop it onto one ear and start playing. And what's the first song to play? "Stronger," by (stupid) Kanye West. And I start to feel pumped. I start to not only emotionally, but physically, get excited and revved. My mind focuses from hating the cars and buses in front of me to the anticipated rush and burn. My shoulder muscles, usually tense with stress, begin to feel looser, my face begins to warm, and I'm nearly drooling to sweat.

I park, jump out of my car, throw my cardigan in the drawstring bag, flash my badge, and run (yes, run) up the stairs - something I haven't been able to do in years. I'm a couple of minutes late, so the trainer tells me to do 10 minutes of cardio. No problem.

You would think I'd leap at the bikes, but if you've been following my blog for any time frame, you'd know that I can't just do 10 minutes on a bike - indoors or out. No, I'll save that for a spin class I hope to take, or, dare I say it, a ride in the next week or two. I hop on the treadmill, repeating "Stronger," and start out. I'm going to make the most of my 10 minutes. I start my pace at 3.5, and amp the resistance. And I pound out a fast walk. I was in "the zone" the minute my feet hit the driveway thanks to that song. My heart rate leaps up to 160. Time to rev up the speed. 3.8. Next song up. Ramp it up to 4.0 with Duran Duran's "Planet Earth." I'm feeling such a rush, I'm about to crank it up to a jog.

Crap. Stupid endorphins brainwashing me into thinking I can run. HAHAHAHAHAHAHAHA!

Newly-found moderating brain cells remind me of the hell that 5k LIVESTRONG Challege did to me - and though I'd started treatment by then, I was still in better shape than now. Ok. Back to walk. My trainer must have noticed the idiotic move I was on the verge of making, tapped the machine, and asked how I was doing. I smiled and said fine. In my head, I was grinding the treadmill to shreds with my prowess. I was making it my bitch. Good thing 10 minutes just wound down - treadmill lives another day.

We get to work on our big muscle circuit before venturing to The Zone, a new set up. I hit the circuit. First, leg presses. I start where I left off - 2 sets of 12 at 140. The machine flies and I feel zero resistance. After one set of 12, I bump it up to 165. That's better. Not painful, but resistant. 2 more sets of 12.

I move onto the next leg machines - and I can do 3 sets of 12 with no pain - compared to the 2 sets of 12 last week. Legs are feeling like my own, again. Stronger.

Onto the pectoral fly machine. My arch nemesis of the gym. You see, it always was, but when you have your chest sliced and diced, expanding water balloons forced under your pectoral muscles, and then lumps of silicone permanently put into place where squishy, attached and organic breasts used to be, any activity that uses those now overly stretched-out pectoral muscles feels... WEIRD. There really isn't another word to use. It's just weird. You can't control the fact that your pseudo-boobs pop up and down, almost waving at the crowd, with every fly motion. They flap in the wind like two tops of tea kettles when you push down on huge button to pour out the water. Only with perma-perked nipples on top. Aside from the physical weirdness, there is an emotional sadness and moderate humiliation. But by now, Eminem is rightly advising me to lose myself in the music, and that's what I do. I lose myself, in the music, the moment, I own it, and I can't let go - I have to push through every rep. Failure is not an option - not now. I have to push through to move on. And just like that, I'm done. Moving on. 

Next thing I know, I'm on more upper body machines, but this time, I'm upping the weight a notch. I'm starting to do 3 sets of 12 reps on some, not all, but some. And then I'm done. I did it. And I can still walk. My back hasn't buckled. My shoulder bursitis is less painful than it was while I tried to sleep.

Dare I say it? Week #3 and I'm finally feeling... STRONGER.

Wednesday, March 5, 2014

2 down, 3 to go...

March 5, 2011, I was preparing for my 2nd Rock the Ride & Run benefiting LIVESTRONG. I was unwittingly incubating two cancers in my right breast.

March 5, 2012. My friend, Mary, and I got the news that, so far, our chemotherapy and her radiation worked - we were now N.E.D. - No Evidence of Disease.

March 5, 2013. It was less than a month after Mary's funeral. I was declared one year N.E.D.
Today. It's been less than a month since Suzy ran out of time against breast cancer. I'm out of full-time work, currently back to teaching Hebrew School again, and midwifing a stray mother cat, Ahavah, as she labors to deliver her kittens today. And I celebrate 2 years N.E.D.

Monday, March 3, 2014

Starting from ground zero...

After long last, the universe is finally letting me start to rebuild my body again - not with silicone implants or skin grafts, but with muscle, strength, power and flexibility. My back injuries that flared up due to atrophy have eased just in time for me to start a new LIVESTRONG at the Y program at the New Canaan YMCA. Last Wednesday, we had a group orientation. Monday was our evaluation. Today was our first introduction to the machines.

On Monday, I left feeling pretty good about myself. I did my 6 minute walk with ease. My flexibility was great (though I was surprised at how different my right and left arms were!). I could let press 265 with ease. My arm strength was 3x better than I'd anticipated. I went into today's session excited.

Of course, when asked if I wanted to go on the treadmill vs a bike, I chose the bike. The trainer wanted me to try a recumbent, but it didn't feel right, so we went to the spin bike. Ah! Cleat friendly pedals! A saddle! Home!

I jumped in and adjusted the seat height like an old pro. I picked the 3 mile coastal ride - they said to keep it easy and quick. No problem!

I start off, and I'm passing the other digital riders. I'm spinning at 75 rpm and 15-17 mph. While I miss the wind on my face, I'm feeling comfortable. I'm shifting gears. I'm rolling. I'm catching up to the pace setter. I start chatting with the trainer. But, soon, the hills hit. A bit of strain. A bit out of breath. A little burn. Finally, a challenge.

But then, though I'm passing other digital riders, the phantom pace setter is pulling farther ahead. I push harder  I'm on a downhill and I try coasting to let the burn ease off. What!?! No coasting on a spin bike? Ugh. Fine. I keep churning, but even though I'm going I downhill, I'm burning. I'm slowing. The pace setter is getting away. I'm starting to sweat. I figure I've got to be near the end of the 3 mike mark. 

Then my heart sank. I was at 1.3 miles with 1.7 to go. And I'd already hit the wall. The trainer approached to tell me it was time to move onto the weight machines. Saved by the bell.

I think she could sense my disappointment as she reminded me, "Baby steps. You're doing great."

I kept telling myself that was true. That it was a spin bike. That there was no wind. But it still hurt to the core.

The rest of the workout was uneventful - I felt good about the weight levels, the pace, etc. Stretches were a surprise, though - pangs on the back and knees hit so I have to rely on alternates for now. But that will come in time.

I guess that's the hardest lesson of all to learn - it will come in time. I'm not used to that mantra.

But I'm relearning my body, my strength, and eventually my power.

Tuesday, February 18, 2014

People are Stupid

Yes, yesterday was one of those days.

I got a call from a recruiter - not a recruiter with whom I've ever done business - who found my resume somewhere online. She wanted to get some more information about me about a possible job in an area to which, out of desperation, I'd travel, but I wasn't thrilled. So, as we were reviewing my resume, she had a few questions.

She said I had excellent credentials, and then she asked me why I was not PMP certified. I explained that the jobs that I had simply didn't allow the extra time to study and take the test. As we were talking, we discussed my last full-time, permanent position. I was telling her about the ups and downs experienced, how there were periods where we weren't getting paid, and how I was being scrutinized, even though I was a full-time, salaried employee, over hours I had worked at home and things just degenerated from there. She asked why I had been working from home. I explained that I had breast cancer, and some of that time was between when I was laid off and rehired, so I got some procedures done as part of my cancer treatment.

At that point she said, "Well, why didn't you take advantage of your time 'time off' and go get your certification since you weren't doing anything?"

Since this was over the phone, I couldn't simply reach across the table and smack her upside the head. Nor could she glean from my eyeroll that she asked an utterly stupid, obnoxious and foul question.

Golly, lady, it might have been that I was too busy having my breasts lopped off, poison injected into my body every couple of weeks for a few months straight, and then having all kinds of infections, skin grafts and other organs removed on a whim.

So, I grit my teeth, smiled, and explained that I think she needs further sensitivity training.

She asked, "Why?"

Really? I explained that her response was callous, ignorant, more than likely illegal, surely a form of harassment and discrimination. She said I was overreacting. I asked her if she would like to find out when I contacted LIVESTRONG for their best legal referral, and the lawyer and I would file to sue her ass.

She told me she couldn't represent me because I was too unprofessional. I told her she was damned right she couldn't represent me - she was clearly too incompetent.

Then I called her boss.

I haven't heard back from her boss, or from whomever she directed my call (it could have been to the janitor, for all I know). I kind of wish that I did, so I could let him know that he hired a complete moron, and even though I don't have formal recruiting experience, I, or my cat, Samson, could do a better job than this woman, and I certainly know what is an appropriate response to a candidate explaining that they were getting cancer treatment and working from home during their "time off" and what isn't. I'd love to tell him a few other things while I was at it, as well.

Sadly, it appears all I can do is vent here on the blog.

So there it is.

What frightens me, though, is how many recruiters from the past couple of years have been equally as ignorant? How many, in discussing my resume, credentials, survivorship, etc, or even Google searches, actually think what this woman was thinking?

How many hiring managers learn about my cancer and think that I could have been more "productive?"

How many are apprehensive because they wonder if I'll need treatment again? How many somehow think that the cancer is contagious, or was brought on by something I did? Are recruiters and hiring managers still that backwards in their thinking that I'm a pariah? Really?

I don't hide my cancer past - I wear it as a badge of honor. I'm not going to hide it. It doesn't own me, It's not who I am. It's not my work history or my capabilities. I still worked daily in my hospital room, from my bedroom, my loft office, and even my office office, when I had work that required my attendance in-person. And it was 2 years ago.

So who cares? What's the problem? Why make me feel "less than" because I fought a disease and came out the other side, stronger, more intent on working a job for which I'm passionate?

Funny, I thought those were good things to have. Bottom line, to all recruiters and hiring managers that have a problem with the fact that I'd had some sick leave, took some time off a couple of years ago, and used my time between gigs to address some of my health issues...

Sunday, February 16, 2014

Jewish Guilt is bad enough... but Jewish Survivor's Guilt? Fuggadaboudit

Imagine you're in a car. Someone else is driving. You and your friends are all in backseats. There is absolutely no difference between how you are sitting or they are. You all have your seatbelts on. You're all doing what you're supposed to do. Hell, we'll even throw on helmets, knee pads and shoulder pads for extra protection. And the driver suits you all up with bubblewrap suits. You're all equally taking the same exact precautions.

Now, cars hit your car simultaneously - you and your friends are struck with the same amount of force, and the car rolls. By the time it is all over, the car settles. You open your eyes, and no one else but you and the driver make it out alive.


And, just to make it worse, as you sit in your hospital bed for mere observation while your friends funerals are being planned, you see on your social media feed that several other friends, who were also in cars, with the same gear you had on, and the same impact, didn't survive. And your friend's wife. And another friend's wife. All of whom you've spoken to about all the precautions you were taking in the car.


That's pretty much how this week has been. Past month. Past year. Cancer fighters in my life, LIVESTRONG related and not, that I was surrounded by in one way or another, that shared breast cancer specifically, have been dropping like flies. And I'm starting to feel like last man standing. And I don't like it.

My friend, and fellow LIVESTRONG Leader's wife, Judy, broke my heart. Scott is a cancer survivor himself, and his wife was diagnosed and taken within what seemed to be a breath. Ashleigh Moore, an amazing man, cancer survivor, and fighter, and an International LIVESTRONG Leader who accomplished more than any leader I know has for the cause, was taken from us last week.

Those losses are difficult to bear, as it just seemed some of the most amazing people run out of time. And seeing your friend is pain, losing a colleague, sucks. But their cancer was very different from mine.

But Suzy's loss...

Suzy Zeffren Rauch was a firecracker. She was full of life and ruach (spirit) going back to when I first got to know her in Young Judaea. I admired her from afar, as to me, she was like the sun - as much as I wanted to be her, not like her, but be her, I feared that if I got close, I couldn't withstand the amazingness of Suzy. She was popular (far more than I), she was talented in voice and ability, she was charismatic, she had a way of capturing attention from everyone in a room and making them smile and feel good about themselves. She was a leader. She was an example. She was clearly an amazing friend to everyone around her. She intimidated the bejeezus out of me because I so wanted to be like Suzy when I grew up within the movement. She was the embodiment of what I thought female Judaeans should be.

Fast forward several years, and I have just gone through diagnosis and my double mastectomy. I get an encouraging post from... SUZY ZEFFREN RAUCH! I had friended her, because I loved her so much back in the day, and I was sure she'd accepted my friend request on Facebook out of courtesy. But she was posting to me. And then I got a private message from her (I have to paraphrase, as Facebook seems to have obliterated some of my conversation history, but... ):
Rica, I was wondering if I could ask you a question?
Of course, Suzy, what is it?
I've been following your journey on Facebook and your blog. I just found out that I also have breast cancer. What do I do?
After the initial shock of seeing that Suzy Zeffren Rauch followed my story and my blog - she liked me! She really liked me! - the fury of knowing that someone as amazing as Suzy was being touched by this evil disease made my blood boil. And then, I knew I could finally do something that I'd wanted to do years ago - be Suzy's friend.

From that point on, we weren't Judaeans anymore. We weren't just people with lots of mutual friends. We became members of a secret sisterhood. We shared anxiety and tips and support when hair was lost and came back. Ironically, my hair has grown in just like Suzy's - from very loose waves and/or pin straight to dark blonde, rich ringlets.

We seemed on parallel paths at one point in our chats, and then the chats stopped. I wasn't seeing her in my newsfeed as often. Correspondence came to a trickle.

I, honestly, had assumed that she'd fallen into the same communication rut that I had post-treatment - when you come out the other end, you have to suddenly play catch up with reality.

Then, on 2/5/14, I saw an earth-shattering post from my friend pop up that Suzy was going into hospice. (Any children reading this, cover your ears.) What the fuck?! Hospice?!? It has to be for a longer-term recovery from a procedure - they almost put me into hospice after I'd been in the hospital for 4 weeks with the infection because I was taking up a bed in the hospital and required longer-term care vs. hospital care, but once my condition turned around, I was able to just go home.

I messaged our mutual friend, Benji Lovitt, to find out what was happening. He responded very simply, "She just went on hospice care. I think people are now fearing the worst. Hope you're well." (Kids, you'd better still be covering your ears.) Holy shit! Yes, Benji, I'm fine, thanks for asking, but HOLY SHIT! What in the hell?!?

I went to her page to make sure I was reading Benji's message right, and sure enough, we were being asked to post photos and stories about Suzy for her. Her timeline, and her husband's, was ticking nearly every other second with a new photo, and a new story being posted as I was reading. Dozens, and dozens, and dozens were coming out of nowhere with an outpouring of memories and encouragement.

I messaged her, simply, "Sending you LOVE!" praying to get a response. But none came.

Just a week after I sent her that message, on February 12, Suzy was gone.

I haven't been the same since. I'm going to address her loss momentarily, but allow me to reflect here a moment. Aside from the grief associated with her loss, there is an overwhelming guilt that hits me every time I learn a friend or loved one has died of cancer. That, "Why me?" but worse - "Can't you take me instead?" I know I have many more people out there who would be happy if I were, and even benefit in my death. But no one "wins" with Suzy's death. No one benefits. It rips people apart. She was so much more than I ever was. And, it's ok, that many of our mutual friends think the same thing - I get it. And I'm not writing this to have a flurry of, "Don't say that! You're special, etc." I know the reality. I'm half the woman, mother, leader, educator and friend that Suzy was on a bad day. She has a husband who adores her. She has two, young daughters that benefit far more than my son, for example, whom I've failed time and time again. At least if it were me, my son might not remember everything that he hates about me, but remember the good. I have no husband to widow. Of course, I know I have my daughter, and family and others that would be hurt, but I'm seeing those same people devastated by Suzy's death.

Don't read into this as a suicide note - that's not what it is, either. But I can't bare the idea of walking into a room with some of our mutual friends, and Ron, now, having survived the same disease that killed his wife, our friend, and look anyone in the eyes. I'm marked with shame and guilt that I lived and Suzy died.

Oh, and Suzy's voice. In my mind's ear, I remember how beautiful her voice was. I would listen intently as she, and Kera Rennert, could weave harmonies at camp. I would mimic and memorize their melodies, not daring to upstage them, but to learn from their knack for finding the angelic sound in the gaps, so I could do the same when they weren't at camp anymore. Suzy's voice. Wow.

I was just getting reacquainted with her, this time as equals, and I'd begun to fall in love with her as a younger sister does an older sister, all over again. And then it stopped. Short.

I hate this disease. And, in many ways, I hate surviving it. I hate outliving people like Suzy.

I look to Suzy to remind me to be thankful. Bless whoever it was that posted this amazing version of Modeh Ani sung by Suzy.

As a tribute, expect to hear my daughter and me singing this at her Bat Mitzvah.

This is the voice of an angel.

A fund has been set up in her memory at the camp that she loved, and where she was wed:

By Ilana Zeffren:

Read more about Suzy here:

Tuesday, January 14, 2014


If you follow any number of higher profile cancer warriors - from bloggers to doctors to celebrities - you may have heard about the articles that appeared in The Guardian (now down) and the New York Times by a married couple of "journalists" - a term I use very loosely for the Kellers. The wife got information from a cancer blogger via private messages with or without full disclosure that they were not only the subject of an editorial, but that it was using her blog as a means to "debate" the "ethics" of blogging about one's cancer journey, particularly if the end is sooner, and more grueling, than one might hope. It was a despicable piece. What was worse was that the "author's" husband then, in the New York Times, essentially re-wrote his wife's article, even admitting to loosely "perusing" the cancer fighter's blog, and stating that because his father-in-law died one way, it was "unethical" and "unbecoming" to share one's journey any other way.

I lost my mind. I really did.

I'm not going to speak for all of us cancer fighters that choose to share our journeys and fights through blogs and the like. I'm going to speak for myself, because I know there are a lot of folks out there who feel the same way, and to educate the morons like this husband/wife pair who, rather than ask why, suppose they know best and then impose their beliefs as the moral standards.

First, I was a LIVESTRONG Leader first, which meant that my involvement in the cancer community was that of a leader publicly. So, it was natural that I share my fight in the same manner - it would have been hypocritical of me to be asking those fighting cancer in my community to come out and talk about their journeys when I was silent about mine.

Second, from a practical standpoint, I have friends, families and colleagues all over the world. However, I only have one set of hands, one mouth, and two phone lines. Unless I had absolutely nothing to do all day but to call, email, write and Skype with every individual that wanted to be kept up to date, I had to find a more universal means of letting folks know what was going on - my blog accomplished that. My fellow LIVESTRONG Leaders, high school friends, college buddies, family, colleagues etc, could simply check out my blog if they couldn't connect with me, and I could rely on that one outlet to share the basics. Obviously, I spoke with folks in other forums as the relationship and events dictated, but this was a resource for anyone to check in and catch up.

Third, there were days when I didn't want to talk to anyone. There were days I didn't want to see anyone. There were days when I didn't want a dialogue - I wanted a monologue. I was too uncomfortable to have the patience to deal with responses. I wanted to just get things off my chest, share my thoughts, and that was it.

Fourth, I didn't know if I was the only one who was experiencing what I was experiencing. I shared things I lived through hoping to get more experienced cancer fighters to respond with advice, information, etc. And it worked.

Fifth, I did it to share so that other women who were diagnosed similarly knew what the general path could be like, in a non-clinical fashion. I wanted to share the funny experiences and thoughts I had in hopes that I could make someone going through this farcical situation laugh when they needed. I wanted to share the absurdity so that I could waylay someone else's fears.

Lastly, I honestly wanted to lay down in writing what I was thinking in case a) I forgot what my journey was years from now, b) the cancer and treatment didn't go well and affected my memory, c) I needed to document what tests and treatments I had in case I had to provide a doctor my medical history for future treatments and d) in case I didn't survive my cancer, my children could read in their mother's words what her journey was. I wanted to leave a legacy of my voice. I wanted to tell my own story so they wouldn't have to try and remember on their own.

I assure you, if my tale ended grimly, I would have continued to write just the same.

You do not have the right, however, to judge how I share my cancer story. You have the right not to read it, you have the right to say that you wouldn't do the same. But you do not have the right to tell me that what I am doing is not "ethical." Keeping silent is unethical. Judging a woman who is dying and is reaching out for support is unethical. Talking about the realities of this disease is not.

Good for you, Lisa. So many of us have your back.

Thursday, January 9, 2014

Is there such a thing as "Cancer Free?"

In the week or so it's taken me to recover from the emotional roller coaster my "Big C" Marathon caused me, I think about what a friend reminded me when I expressed my reborn anxiety - "But, Rica, you're 'Cancer Free.'"

Is there ever such a thing as being "Cancer Free?" It's not like I'm a can of soda - when I have zero sugar in my ingredients, and there is a governing body that approves of the label, and I'm declared "Sugar Free," therefore I feel sugar free. I would just BE sugar free. 

The trouble is, I remember what it was like to truly BE Cancer Free.

Maybe it's a little more like being decaffeinated coffee - I once had caffeine, but it has been stripped out of my being. Caffeine was inherent to my being coffee, but after an extraction process, I'm now lacking my caffeine, left a sad, watery shell of who I used to be.

So would that really make me "Decancerated Rica" as opposed to "Full Strength Rica?"

Still, no. Because the coffee only went through two states - Caffeinated, then Decaffeinated.

I actually went through FOUR states - 1) Rica 2) With Cancer, Blissfully Unaware Rica, 3) Full-on Cancer Rica, 4) Now "Cancer Free" Rica. But, note, State 1 does NOT equal State 4.

I will never, EVER be "Rica" - with no state of cancer at all. State 1 will never exist for me again.

I have been permanently changed. I have the scars to prove it. There isn't a morning that goes by when I am not immediately reminded of the fact that I had cancer in my body. Reminders surround and are within me. From the fact that the house has been under 60 degrees every morning I awake this week since the polar vortex came into effect and, while I have goosebumps all over my body, my breasts are just there and my nipples no longer react nor do they perk up - because they are numb chunks of thigh skin, tattooed in a faded pink. When I rub my eyes, and begin to scratch itches on my shoulders, and I brush against my cleavage, the skin on the top of my right breast senses my finger tips normally, but on the left side, there is an irritating tingle, barely cognizant of the fact that it's not an unpleasant scrubbing action triggering a response, but a gentle touch.

My bones and joints ache more than ever in this chilly weather. I cannot tolerate cold the same way I used to before chemo. While I was always a "Summer Baby," and I hated Winter, I could endure it. My elbows didn't ache from the core. My knuckles didn't stiffen. My spine wouldn't surge with prickly cold. But it does now.

Once in the shower, I realize that I really don't have to do a self-breast exam anymore, even though it's become second nature. Instead, as I begin the futile, and irrelevant exam, I feel the horrible horizontal scar that I had assumed would have completely disappeared on each breast where my areolae used to be. I feel the strange pucker around that line, so the breast skin doesn't hang correctly on the lower right half of the right breast, and there is still a tough, thickened patch of subsurface scar tissue on the inner side of my left breast.

As I sit on the commode, facing the cabinet with glass doors in which I kept my feminine products, I see the package of maxi pads I'd picked up right before my oopharectomy, out of habit, forgetting that just a couple of days later, would become irrelevant and would sit dormant unless a visitor needed one, or my daughter has her first "visit from her cousin." I see the last of my tampons, which haven't budged since April.

When I make it back to my room, and I sit at my vanity, I measure the length of my hair. Now, it's just tickling my shoulders. I pull at the longest piece and measure to see how long the curl now unfurls, and to see if it hits my shoulder blades yet. I shake my head, as I still have a way to go. I reach back and see if I can reach the back of my hair. It's nowhere to be found. I have at least another year to grow my hair to the length where I felt comfortable.


After (Straight)

After (Curly)
I try and remember what tasks I have to do today, and I find that I can't remember what they are. I take a minute and try and remember what day of the week it is. I have to resort to peeking at my iPad or iPhone to check the calendar. Since chemo, I still find that I have trouble remembering which day of the week it is. (Sorry, Dr. Tepler, you can't tell me there's no such thing as chemo brain.)

I look in the mirror. My eyebrows have grown back, and they are starting to get unruly. But I'm scared to tweeze them. And, now that they are back, I find I can't pencil them in as well as I used to when there were no hairs there. Ironically, my eyebrows look far less realistic now when I try and do them than they did when I had no eyebrows.

I see a double chin where there wasn't one before. I see a puffy version of myself. When I started chemo, I was told to eat when I could, as likely, I would lose my appetite. Ironically, of all the cancer patients I knew, my appetite never died. In fact, I ended up gaining weight. Whether it was from the steroids I was put on heading into chemo, the fact that I was pretty much "benched" from physical activity after I tore mastectomy souchers and gave myself an infection, and never recovered from the atrophy that induced, or that my energy post-chemo has never recovered, I am in a terrible physical condition.

For the first time in my life, I'm not physically fit. I was never a twig, but I was always fit. Not since chemo.

And, at this point, it isn't even a full hour since I've awoken, and I've recounted how many reminders that I had cancer?

How can that be called "Cancer Free?"

This year, I will be "Cancer Free" in March. Oh really?

So, here's what I've realized:

I don't care if you survived the surgeries and treatments a day, a week, a month, a year, or a decade ago - we are never "Cancer Free" again. We may be "Decancerated," but we'll NEVER be "Cancer Free" again.