I resonate with this motivation. As I explained in an early blog post, I have always found the silences around our bodies to be a strange form of culturally mandated dissociation. We all have bodies. They all have feelings and experiences, but we are somehow raised that it is impolite to discuss them.

The loneliest moments I have ever experienced have been in unanticipated, unrecognizable corporeal suffering. Somehow, putting words to these sensations and having others recognize them makes me feel less alone by acknowledging an important and essential aspect of our common humanity.

So here I am, having another intensely bodily experience. After two years and seven months since my diagnosis, my cancer treatment is coming to an end. My Medical Body is becoming a Private Body again.

Let me rewind a bit for you and explain. Early on, it became clear that Medical Bodies are not granted the normal respect granted to healthy bodies.

During my first diagnosis meeting with a team of doctors and residents, I heard the information about my disease: staging, tumor type, treatment plan. Needless to say, I was in shock.

Then the team wanted to “palpate my tumor.” I was to remove my hospital gown, stripped from the waist up, and sit on the exam table while, one by one, the doctors basically felt me up. I caught eyes with my husband, as we were both struck by the new bizarro world we had entered. This activity would have seemed inappropriate and lacking dignity just days ago. Now I was expected to endure this as a procedure, allowing the doctors to individually assess the location and size of the cancer.

This was only the first of many insults to my body. They are too numerous to list, but I will name a few to give you a flavor.

•  The prolonged pain after my port placement that my surgeon responded to as “no big deal.” (I later fired her.)
•  The way some nurses abruptly flip on lights in the wee hours during a hospital stay so that they can “take your vitals.”
•  The way your bald head causes some cold-hearted people to shun you because you represent disease and mortality.
•  The way some chemo nurses will “push” your infusion at the end of their shift so they can go home, even though it hurts.
•  The way strangers simply appear without introduction when you are half naked on the radiation table.

As my reconstruction has progressed, the procedures have gotten more intimate.

Really. It is  not possible to be any more flat-chested than this.

First, I went from my truly flat-chested body to one with some roundness. Then, I switched out hard tissue expanders for softer implants.

Now, the most intimate surgery of all is on deck:

Nipple reconstruction.

It is so so private to talk about nipples. I can barely stand it.

But the awkwardness also marks a welcome return.

My Medical Body is becoming a Private Body again. And I am so thankful for that.

Scott is a musician/producer living in Brooklyn, NY. He was putting the finishing touches on his first CD, Chained by Dreams, with singer/songwriter Michelle Hotaling when he was diagnosed with testicular cancer in 2006. After surgery, five and a half weeks of radiation and an all-clear prognosis, Scott continued his work with music. In 2009 Scott and Michelle released a 2nd CD called Sweet Clarity, and followed it up this year with a free, download-only Fleetwood Mac/Stevie Nicks tribute album called Crystal Revisions. Scott is also a mobile app developer for Time Inc. and runs a part-time energy business in which he helps people get free electricity and natural gas in their homes and small businesses.

In his keynote address, Matthew Zachary, the group’s founder and CEO, asked if there were any people present who had attended the first summit back in 2008. There was one lonely “woohoo” from the audience. (That’s right, THIS guy.) This was my fifth OMG conference. Five out of five.

(Ed. note: Scott’s the guy on the right.)

And yet, I was completely unprepared for how profoundly this year’s summit would impact me.

I’m still trying to sort that out, but I’m going to give you my best attempt.

I was so looking forward to the event. I’ve met some wonderful people at all of the many Stupid Cancer events over the years. But the people I met at last year’s summit are people who are going to with me for life, so I was certainly looking forward to seeing them again. I was also eager to get out of New York City for an extended weekend. Vegas is not my favorite place in the world, but that said I was excited for the insanity, the forced opulence and the over-the-top-ness of it all.

Friday night was a kickoff event at Moon, a rooftop club at the Palms Hotel and Casino. It was a chance to re-connect with some old friends and meet some new ones.

It was also a chance to get Jesse “Urbalist” Hershkowitz’s song “Stupid Cancer” stuck in my head
and NEVER GET IT OUT. Seriously, his brand of life-affirming, positive hip-hop is something you need to check out.
(And getting a shout-out by name in one of the verses of that song has NOTHING to do with me liking it so much. I swear.)

But even then, the weekend felt… emotional.

I had a thought that Matt ended up echoing in the keynote:
“It’s great to see so many people here … but it also SUCKS to see so many people here.”

This thought continued at breakfast the next morning. As I sat in the big banquet hall, I looked around the room at the smiling faces, old timers like me and the newcomers realizing they were in a room full of people who GET it.

But through it all, an unexpected wave of anger come over me. What kind of world, what kind of universe, derails the lives of so many beautiful, beautiful people? How many people in this room had dreams they’ll never get to realize? Medical debts they’ll never overcome? How many people in this room are going to die soon due to cancer? How many people in this room are going to die soon and they ALREADY KNOW IT?

The rest of the day brought many similar profound, heartbreaking, infuriating moments.

The young woman in the audience at the Self-Image Workshop with Stage 4 metastatic breast cancer who felt crushing guilt for the selflessness of her caretaker husband. The young man who, due to his fight with cancer, was now bald, overweight, physically compromised, in debt, and living with his parents. (“Dating is going to be fantastic — I’m a real catch,” he joked.) The woman whose significant other had just left her two months prior because of her fight with cancer — all of this as if fighting cancer itself wasn’t difficult enough. Cancer at any age is devastating, but I think these stories exemplify the unique struggle that befalls the adolescent or young adult cancer survivor.

Also on Saturday was a panel on Spirituality. I thought the panelists did a fine job of expressing spirituality in a non-denominational way but I became very interested when they decided, with 15 minutes left in the session, to open up the floor to questions or comments. The first few people who lined up to speak offered the kind of thoughts I would expect: How God has a Plan for them, how the cancer experience has all been part of a journey, how God never gives us more than we can handle, and so on. One mother came up to talk about how her son had lost his 13-year battle with cancer at a young age, and how he was at peace and with God now. I certainly don’t want to disparage anyone their beliefs — I think that when you hold a firm-rooted belief if your life, that for all intents and purposes, it exists as truth in your life.

I also knew that the sentiments I was hearing weren’t my truths.

But then a young woman whom we’ll call Chemobabe stepped up to the mic. She recounted the story of losing her brother to cancer years ago, receiving her own diagnosis shortly thereafter, and the ensuing struggles with which readers of this blog are no doubt familiar. And she was angry about it. And I could feel it in myself as well as see it in the nods of agreement around me:

Anger was the elephant in the room.

Here we all were at a panel on spirituality, in one way or another maybe hoping to leave somehow enlightened, whether it was by being reminded of a loving God, or the power of serenity, or the concept of surrender.

Well, I felt enlightened: I was angry.

I knew the panel was running out of time, but I felt the need to go up myself.
“What are you going to say?” asked my friend Alexandrea.
“I have no idea,” I replied.

I do remember it pretty well though. I stated that I am not a religious person at all but that I consider myself very spiritual. I can confidently say that I believe in God, but it’s not like any God I ever met in any church or synagogue.

And I came up with something that feels like truth to me: I’m not here to discover God’s plan for me; I’m here to tell God what my plan is. (Because if there IS a God, THAT is his plan for me.) My cancer wasn’t some sort of gift. It wasn’t given to me so I could learn some sort of lesson, it’s not some sort of journey I’m supposed to take, it wasn’t given to me as some sort of growth experience. It was something that happened to me. That’s all it was. But through it I have received many gifts, I have learned many lessons, I have journeyed far, and I have grown. All I know is right now, I’m alive. And while I’m alive I want to live with as much fucking color and as much vibrancy as I can muster.

There’s an old episode of “3rd Rock From the Sun” in which Wayne Knight’s character is bragging about being a cop and says, “In my line of work, it’s a good day if you come home alive.”
To which Joseph Gordon-Levitt’s character responds, “Isn’t that pretty much a good day no matter what your profession?”

Speaking of Joseph Gordon-Levitt, Saturday ended with a midnight screening of 50/50, the fantastic cancer dramedy by Will Reiser and Seth Rogen, starring Mr. Gordon-Levitt.

I had never seen it. I always wanted to, but it was one of those movies that came and went before I could get my act together. I sure as hell didn’t want to Netflix it and watch it alone on my laptop, so I was thrilled that I’d have the opportunity at OMG. The screening was in the Pearl Theater at the Palms. A group of five of us, Chemobabe included, commandeered a table and prepared to watch. Three of our group had seen it before.

Right from the get-go I realized I could not stop shaking. It was cold in the room but that had nothing to do with it.

And not too long after that, I realized I couldn’t stop crying.

Looking around the table I realized I was in good company. The pile of tissues at our table continued to grow until it became what one in our group referred to as Mount Tissue-monjaro.

There were so many scenes that hit so close to home (the detached and impersonal doctor, the abandoning significant other, the coldness of the hospital rooms and equipment, the sickness due to treatment, the sudden disappearance and loss of hospital compatriots), but there was one scene in particular in which Gordon-Levitt’s character, after an eternity of seemingly taking things in stride, has a complete meltdown in his friend’s car in a well-acted scene that I literally almost couldn’t bear to watch.

Thank goodness for bars in Vegas being open 24/7, and thank goodness for tequila. (And thank goodness for amazing people to share said tequila with.)

The day after Mt. Tissue-monjaro. We cleaned up alright.

And so it was that the weekend triggered, in a sense, the humble beginnings of my own Car Meltdown moment. I’ve taken lots of things in stride. I’ve experienced the hospitals, the loss, the abandonment, the aloof doctors. But I never really experienced the meltdown. After this weekend, I can feel it coming — maybe not to the extent of the scene in the movie, but I can tell that, even more than five years out from the end of my treatment, I have a lot of issues that I have yet to deal with despite feeling that I was “done” and that I had begun to move on.

My birthday was Monday, the day after the conference. I was talking to my best friend from high school. He was on the 89th floor of the World Trade Center on 9/11. Obviously, he survived though he can now recall probably a dozen separate instances in which he very nearly died. He has seen, heard, and experienced some truly terrible things. He finally went into therapy a couple of years ago and had this to share from his therapist:

When someone goes through a traumatic experience, the mind essentially separates the memories of what happened from the reality that it was YOU that was having the experience. It’s a survival mechanism: When you look back you tend to see it almost as if it happened to someone else. However, by the same token, mental health is restored, hopefully, when those links begin to reconnect. This begins to happen in most people between 5 and 10 years afterwards. I’m now five and a half years out — I am pretty sure this is the process that was sparked by OMG 2012.

I’m not relating all of this to scare anyone going through, or recently out of treatment. I think you already get the sense that this is a long, long process.

I’m relating all of this so that you remember to always be open to the process and to surrender to it while always keeping your mind open and accepting the well-intentioned care of your loved ones.

If you feel anger, feel it.

If you feel aloof, be it.

If you feel like crying, do it.

And if you start to feel those scarred strands of memories reconnecting somewhere down the line, let them.

No one gave you this experience so you could learn and grow. But don’t be afraid to learn and grow from it anyway.

The sterile, enclosed environment. The fluorescent lights, the rooms designed for medical treatment, not for any kind of aesthetic pleasure. The machines ominously whirring and bleeping. The periodic sounds of crisis in the hallways. The shadows of mortality and frailty. The bland, institutional food. The strangers who come in, announce their names with varying degrees of engagement, perform tests, invade your body, give treatments that cure but hurt. Isolation from family and friends. Pain, discomfort, frustration, uncertainty, followed by hurried interactions filled with obtuse, technical language.

What is the opposite of being in the hospital?

Cancer retreats always seem to provide an answer to this question. I’ve been to a few now, so let me explain.

Life Beyond Cancer said that the opposite of a hospital is a spa-like retreat. We had a program of activities at a calm and self-directed pace, delicious healthful food, companionship, inspiration, and activities to soothe and heal the body.

Little Pink Houses of Hope sets its retreats at the beach: fresh air, sand, the expansive ocean, and sunshine. Our days were filled with art, outings, no financial stress and quality family time.

This past weekend, I had the pleasure of going to the OMG! Cancer Summit For Young Adults with StupidCancer.com.

(Faithful readers may remember that they are the group with whom I ran my first post-treatment half marathon.)

Stupid Cancer has a different answer to the Opposite-of-a-Hospital question:

Vegas, Baby!

Photo by John Sabia

Literary theorists talk about the human need to turn the World Upside Down (WUD). Think Charlie in the Chocolate Factory or Dorothy in Oz. It’s a way of regaining equilibrium, particularly after a stressful situation.

My belief that cancer retreats seek the Opposite-of-the-Hospital to help us regain equilibrium.

Vegas definitely turns the hospital world upside down. Raunchy, smoke-filled, hedonistic, youthful, indulgent, living in the moment, sin, impulsiveness, swaths of people, over-the-top spectacles, the cacophony of music and slots.

More importantly, the conference itself was terrific.

Workshops focused on a combination of social and emotional issues relevant to young adult survivors: sexuality and body image, dating and relationships, spirituality, links to the environment, careers, insurance, advocacy.

Then we would do things like dance to a DJ in a rooftop nightclub.

Screenwriter Will Reiser spoke with Stupid Cancer founder Matthew Zachary on Saturday after receiving the first ever Extreme Survivor Award for 50/50, his film about a young adult diagnosed with cancer.

Will Reiser & me. He’s a super nice guy.

That night, we had a midnight showing of 50/50. It’s a great film that captures many of the truths of young adult cancer, despite the few inevitable Hollywood touches.

Although I had seen it before, there was something unspeakably wonderful about sitting in a room full of young adult cancer survivors. We bonded through knowing laughter and deeply pained tears of recognition. At the end, my companions and I had filled our table top with tissues. We needed no words to explain the sobbing that overtook so many of us.

But tequila helped.

What happens in Vegas gets posted on the Interwebs. But it was a moment worth remembering.

I was invited to speak on a panel on life after treatment.
(YouTube video forthcoming…)

My friend Naveh says with my purse out front it looks like I walked in off the street
and strolled up on stage saying, “Let’s do this thing!” then went shopping.

When you meet other young adults who have been through cancer, you can tell your back-story in two sentences. In normal life, it takes paragraphs to explain a cancer experience. Even if you get that far, it never adequately captures the experience.

Starting the conversation so deep into something that has profoundly altered your life allows you different kinds of conversations and connections, the kind that deepen your own understanding of your self and something that has touched you at your core.

That kind of experience, without a doubt, is the World Upside-Down.

Around 10 AM, I got a phone call. I saw on the caller ID that it was my uncle, my dad’s caretaker and somebody who never calls me. My heart sunk seeing his name flash on the home phone.

He was calling to let me know that my dad had just died. It looked like a heart attack.

After getting more of the details of what happened, what was going to happen, I got off the phone, let others know, and then felt the news sink in.

I went upstairs to the attic and pulled out a couple of boxes of loose photographs. My grandma had given me some family photos from her similarly organized collection before she died, and there was one in particular I was seeking out.

The photos were dots on the timeline of Dad’s life, and it was my job to try to connect them.

His life, once so full of potential, was cruelly derailed by mental illness.

He was the first of my grandparents’ three children. Born bright, beautiful, and precociously verbal, he was beloved by them both.

He protected his little brother in their New York neighborhoods. His friends described him as fiery and mischievous.

Moving across the country to Los Angeles as a teenager, he never lost his New York accent. I even called the hot morning beverage “cawfee” as a child. His precociousness played out, and he did well in school. He got into UCLA at 16, the first in his family to go to college.

****

There is a photograph that fits in this point of the timeline that I cannot find. It’s a picture of my 17 year old dad in front of his Volkswagen Beetle on a palm tree lined Los Angeles street. He is full of swagger, his long legs crossed, head tilted with his thick brown hair flopped to the side. The look in his eyes asks the world to dare him: he was game for anything.

I found that photo when I was younger and spent a long time staring at it, memorizing it. I imagined it was before he had his first breakdown. I always wished I could go back to that moment and figure out what I might do to save him from the demons that haunted him the rest of his life.

I was his daughter, loving and loyal. I wished I could save him from himself.

But I couldn’t.

****

Somewhere soon after that moment, my mother got swept up by the bright, handsome young man, meeting him on a beach. They married, had my brother and, soon after, I came along.

My parents divorced before I was two. My dad couldn’t hold a job and was increasingly tormented by his ailment.

He was my dad in spots and patches. A weekend dad for most of my childhood, there was a long period of limited communication between my 12th and 18th years.

He was a confusing father in many ways. His stories would crossover seamlessly into fantasy. It took some sorting to realize that Dad was not a veteran of the Vietnam war. I was suspicious from the outset that he did not single-handedly thwart the first Kennedy assassination attempt, although I have a detailed account of his heroic actions handwritten on yellow legal paper.

When he was manic, he would often leave me alone in his apartment, kept company by the shadows cast by the street lamps, while he walked for hours until the sun rose. When he was depressed, I would wait for him to wake, poking and jabbing him. When I couldn’t rouse him, I would forage in his understocked kitchen for something to eat.

Eventually, the court ordered that I could not stay alone with him. My grandmother had to be present to make sure I was cared for.

When we reconnected, I was in college. He was living in a psychiatric hospital at that point but soon after was discharged.

The greatest period of our relationship happened when I was between the ages of 18 and 35. I was independent enough not to need him much and old enough to have compassion for his situation.

I am like him in many ways. I was a precocious child. I love reading, ideas, and music. My grandmother recognized, with some concern, that I shared his “tender heart.” Like him, anger only increases my verbal acuity.

I admit, I never quite let go of the desire to rescue him from himself.

I spent a good chunk of time in my twenties researching mental illness, wondering where the ailment ended and the man began.

Was he like this because of the labels he had been given? Would he more truly be himself without pharmaceuticals? Is mental illness just nonconformity pathologized?

All the while, he would come and go, both literally and figuratively. He would have periods of descending into breakdowns, unreachable. He made it for some of my life events, but not for others. He loved being a grandpa and took delight in my children.

;

As sudden as death by heart attack is, I have been letting go of my dad for some time.

I started saying goodbye the week my stepbrother Jeremy was diagnosed with cancer.

They were not related, but I loved them both so these events are permanently linked for me.

The week Jeremy was in the hospital, my dad went AWOL from the board and care he was living at. He had been cheeking his medications and had gotten really crazy.

I went straight from the hellish week in San Francisco listening to Jeremy’s news get worse and worse, down to Los Angeles, where I bought a disposable cell phone and used the number on missing persons flyers we posted around my dad’s neighborhood. My husband and I slowly drove the alleys at night, checking out the homeless guys to see if we could find my dad. I made daily calls to the city morgue to see if any new John Does had turned up that fit my dad’s description.

It was horrible.

Dad eventually returned to his home two weeks later, having wandered miles on foot through a famously pedestrian unfriendly city. His psychiatrist said that after that much time off of his medication, his baseline would not quite be the same. The board and care said that they could no longer care for him given that he was now a flight risk.

Dad never fully recovered from that episode. To be honest, neither did I.

I still stayed in contact with him, but he never was quite the same.

When I was diagnosed with cancer, my uncle and I had a few discussions about whether Dad could handle the news. We decided it might be best to wait until my prognosis was clearer.

When I called him a few months ago, I was unable to have a coherent conversation. So I never told him.

****

I wish I could find that missing photograph. I wish I could show you just how much promise he had so you could join me in mourning not only the life he lost, but the life he never got to live.

I am sharing a tale of comfort and connection to honor what was supposed to be.

The weekend Rachel died, my friends and I did an online vigil, waiting to hear news of her latest hospital stay. As a result, I did not stray far from my phone, anxiously awaiting the latest updates from my friends.

In that unholy modern way, I was doing many things at once: hovering over my devices for news, managing my household, playing online Scrabble, messaging other friends –– simultaneous gravity and frivolity.

Somewhere in that mix, I had an exchange with my twitter friend Kay Gardiner. She was going to be teaching a knitting class in town with her co-blogger, Nashville resident Ann Shayne. Would I be interested in assisting with it?

As Rachel was slipping away, there was a certain kismet in Kay’s invitation. I had learned to knit two summers ago when I finished with treatment. I am a terribly impatient patient and had been ordered to rest. Knitting gave me a version of stillness, since the real kind does not come naturally.

Soon afterwards, Rach started a new chemo regimen, causing her hair to fall out again. She became a favorite of mine to knit for. We treated new hats like a shopping outing. We would look through patterns online, and I would text her yarn choices from the store.

We called ourselves snood sisters.

Rach models the anti-asshat

This odd juxtaposition of experiences –– impending loss, unexpectedly becoming an assistant in a knitting class –– made sense somehow in the weird world of the internet.

Then Rachel died. I was distraught.

Soon after, Kay sent me the pattern for the class. It was a blanket Kay had designed to raise money for Japan in the wake of the tsunami. The pattern called for Sarah’s favorite yarn. Sarah is a knitter too. She and Rach were quite close.

This all makes sense. A blanket designed to help heal a tragedy. A blanket to knit in the wake of Rachel’s death with Sarah’s favorite yarn. A blanket, comforting and cozy. Yes, this makes sense.

As I have written, the grief has been hard. Nobody in my everyday life sees my loss. It lays on the periphery.

After I received the pattern, I set out to work. When I felt sad, I would knit. I thought of how Rachel would have liked it. I wondered what Sarah would say about the colors. The blanket made me feel close to my friends.

These squares are for the Friendship Quilt

Fast forward several weeks. I am at the knitting class. I meet Kay for the first time. Kay and I connected because of knitting, but also because she lost her husband to cancer. She knows illness, grief, and loss. And Rachel would like her, because she also knows snark.

Kay is a mom and a New Yorker and as fantastic of a person offline as she is on.

After we set up the room, people started to stream in. Kay and Ann hadn’t capped the enrollment, so the room filled up. Knitters came from as far away as Texas, New Mexico, Georgia, and Kentucky.

Kay and I took out our phones in an attempt to simultaneously tweet each other.

Dueling iPhones

After we posted the tweets, a woman named Deena came up to me. I had met her before class. She was an avid sock knitter from Texas, sporting a lovely lacy pair.

“I thought you looked familiar! I follow you on twitter. I love your blog! It has been so helpful to me.”

She explained that she was friends with a woman in treatment. From the details, it sounded like Deena had been her rock and resource.

Then Deena said, “I am so sorry about your friend Rachel. I had just found her blog, and what a voice! What a writer!”

I started to tear up because I realized it was the first time I had been offered words of comfort in real life by somebody who knew who Rachel was, who she was to me and the whole breast cancer community.

Oh, how I had needed that.

Deena saw my tears and said, “You know, there’s a Mexican saying. A person dies three times. Once when their heart stops, once when they are buried, and once when the last person says their name. Rachel’s voice was so powerful, so important. She will be with us for a long long time.”

I cried more and gave Deena a hug, thanking her for her kind words.

I don’t understand why things work the way they do, but I am grateful for connections and comfort.