The Tiny (Big) Yellow Pill

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At 6am on a Friday morning in late January, my alarm goes off. Most days my most pressing question at that hour is “over easy or scrambled?” but today I am thinking “Well, bra and jeans are out. What else can I wear that doesn’t have any metal in it?” I have yet another date scheduled with my old friend, the PET scanner.

As I drive in the dark to get the scan, I’m transported back in time to the beginning of the whole story. My diagnosis was almost exactly three years ago. Back then I was on the cusp of turning 34; now I am turning 37. Yael was two; now she is five. Ayla was only five months old; now she is three.

Three years. It’s not a long time really, but to me it feels like my entire life. The transition from cancer patient to survivor is like being born again. Sometimes I feel like I’m walking around pretending to be an adult but really I’m three years old, like Ayla. After all, our hair grew in at the same time.

The three-year scan came back negative— no evidence of recurrence. Phew. These trips have become almost routine. At least I can handle it better each time. And so, recently, I’ve told people that I’ve entered a new era, one where I finally feel like I have my bearings again. Life doesn’t feel like an epic battle, just normally hard­­. The demands are not life and death, but about not having enough time in a day, and how I am going to get my kids to brush their teeth. Aside from the periodic PET scan, I go about my day immersed in work and family, not thinking at all about the trauma of cancer and the fears that linger. Except for one little, quick moment each night, when I take my tiny, yellow pill.

The pill is a hormone blocker called Femara, the final part of my cancer treatment. Since my type of breast cancer was fueled by estrogen, the hormone blocker’s job is to starve any possible remnant cancer cells of the estrogen they would need to survive. There are long-term side effects such as osteoporosis, but I’ve decided that the risk is worth keeping the cancer at bay. A significant research study recently revealed that Femara is significantly decreasing the rate of recurrences in breast cancer survivors. At my last appointment, my oncologist told me, “Let’s just say for now you are on this indefinitely.”

A tiny, little yellow pill, taken once before bed—it is nothing, right? Such a small price to pay for survival. Still, some nights I find myself lying in bed, having made it through the day without thinking even once about cancer (a mental feat which has taken years) and then, all warm and sleepy, I remember that I forgot to take the pill. I need to rouse myself from bed, pull away from a still-sleeping Ian, and walk into the bathroom. I open the medicine cabinet, swallow the pill, and really swallow the whole experience all over again.

More than a reminder of what I’ve been through, that tiny yellow pill is my reminder that I cannot have any more children.

I have two healthy children. I don’t even think I would want anymore. And yet, as I’ve watched some close friends go through pregnancy, birth, and breastfeed their babies, I cannot help but remember what my body once could but now cannot do. This probably is similar to what other women going through menopause experience, but the trauma of being diagnosed with breast cancer while breastfeeding a baby carries its own unique experience of loss.

I saw my therapist the other day, whom I’ve seen less frequently since entering this new era. At the time I saw her I was not yet able to articulate all that I am writing now. I told her that I was feeling a little frantic and that it was hard for me to slow down. She said: “Perhaps you are feeling like finally you are in a better place. You have worked so hard for this. You just want to hold onto it but you are worried about how long it will last.”

Yes. This resonated with me. But we both knew there was more to it. I told her I was feeling pain, like a deep emotional pain.

She asked me where I felt it. I told her I felt it in my throat.

She asked me to describe it. I told her that it felt like a big ball stuck in my throat, but that I did not imagine it to be cancer. It was just kind of big and white, although it was really darker than white.

She told me that she wanted to give me the Heimlich maneuver and help me cough it up. I took a deep breath at that moment and let her help me get it out (figuratively).

Later that night I lie in bed with the girls. I read Yael and Ayla a new story called Imaginary Fred, about two imaginary friends that find each other so they will never be lonely after their real-people friends finally make other real-people friends and slowly forget about them.

On my way to bed I go to the medicine cabinet, as usual, and grab my bottle of Femara. I pull out one tiny, yellow pill and walk around with it half melting in my mouth before I can get a glass of water to help push it down.

But it won’t go down. I drink and drink and drink, but the pill will not go down. It is going to take the rest of my life to wash this pill down. There is really nothing tiny about it.

 

 

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The Eternal Mother of Camp Walt Whitman

Jancy Dorfman, former co-Director of Camp Walt Whitman (CWW), where I spent my summers between the ages of 10 and 20, passed away from cancer at the age of 70. Many of us called Jancy our second mother, the mother away from home, and the person who knew everything about us. She knew EVERYTHING about ALL of us. She knew every camper’s name on the first day of camp. She knew about every single romantic relationship before it even started. She knew when I got my first period (way before my own mother did).

A fellow CWW alumn, Josh Holland, describes perfectly the subtle way Jancy would connect with each camper:

“You are standing there in the middle of that big roaring children’s summer camp. It’s sunny. It’s probably joyfully loud. Maybe you are lost in your own head because big roaring summer camps are intense. Suddenly you realize Jancy is standing next to you. She loops her little arm into yours, she looks up at you softly and says ‘I want to tell you something’ or ‘I want to ask you something’ or ‘I want to show you something.’ Her tone is secretive, conspiratorial. She begins walking.”

I always knew in these conversations with Jancy that I was going to learn something important about myself. Summer camp is about coming of age and working through vulnerable moments, making big mistakes and learning from them, losing a big tennis match and recovering, feeling wise and beyond your years one moment and crying your eyes out because of jealousy the next. Jancy knew how important it was to talk to children during vulnerable experiences because that is exactly when children really learn about who they are and how they can become their better selves. What amazes me now, as I think back to those Jancy conversations through an adult perspective, is that her communication style– soft, non-judgemental, and right to the point, had a big impact on the kind of teacher and mother I would become.

When I was teaching, I thought of her every day on the first day of school. I thought to myself, “If Jancy can learn hundreds of campers names for day one, I can learn all my students’ names on day one.”

The other day, when it was 7:30 am and I was rushing to get out the door, Yael asked me a question that made me think, “Jancy would take the time to address this no matter what she had to get to next.”

I was grateful that Jed, her son and old friend of mine, let me know when Jancy entered the final stage of her illness. He shared a beautiful message about how she spent the last days of her life talking openly and unafraid about death with her family.

I took a long walk after I read that message, around a large pond in Cambridge, one reminiscent of Lake Armington, the heart and soul of Camp Walk Whitman. Since my own cancer experience, I find myself increasingly drawn to nature—the third mother in my life—to heal, to be at peace with my own mortality. How fitting that Jancy once again greets me in a vulnerable moment, loops her arm around mine, and looking with me out into the water says, “I want to tell you something.”

To my Camp Walk Whitman community:

This Saturday I will be kayaking on the Charles River in Boston, at a young cancer survivor’s event. But in my mind’s eye, I will be on the Camp Walt Whitman front lawn at sunset, surrounded by campers and counselors past and present. We turn toward the mountains. We stand together in the presence of our eternal camp mother and listen to her count to three, the way she always did before she wanted us to shout something in unison.

On Jancy’s count of 3 we run. Can’t you just picture Jancy’s face as she watches us, her camp children, run as fast as we can down the hill and into the lake?

Remember what it was like to wake up at dawn and blast your young body into that beautiful water.

Remember Jancy, our eternal camp mother, for she will always remember you.

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I am JoJo

I was never one to voluntarily pursue extreme heights. I was never a winter sports athlete, nor would I have thought to have enough strength to climb an ice mountain. If you told me two years ago when I was diagnosed with breast cancer that I would go ice climbing in Colorado, I would not have believed you.

It is a challenge that my pre-cancer self would never have faced.

On February 16th, I left my house at 3:30am to fly to Ouray, Colorado to ice climb with a group of eleven young-adult cancer survivors. The non-profit organization, First Descents, provides life-changing outdoor adventures for young adults impacted by cancer. First Descents (FD) is an organization with a simple, light-hearted yet profound and deeply meaningful vision, to as they say in their tagline “outlive it” with beautiful people in a beautiful place.

A typical day in Ouray started with yoga and breakfast, then a long ice climbing stretch, hot springs (ahhhhhh), a communal dinner with new friends, and real, organic conversations about life with and after cancer. The trip was also entirely funded by FD supporters (except for that sweet REI jacket I scored the night before I left Boston).

Upon arrival, FD asked us to think of a camp name for the week. At first I was skeptical because I wanted people to get to know me, the real Adina, as I shared some of the most personal stories of my life. But once I found a name that felt fitting, JoJo, as in Angelina Jolie who also has the BRCA1 gene, I got into it. It felt refreshing to be a new person for the week, to get out of my skin a little, and see how JoJo might be different from Adina.

Ironically, however, by letting go of Adina a little bit— her fears, her burdens, her day-to day stresses— I got to feel more like her than I have in a long time. I felt her come back alive when I slammed my pic into the ice and shouted: “The last time I was this loud was when I was in labor!” “College Adina” came back one epic evening when somehow I ended up donning a faux-fur tube top and dancing with nipple tassels, complete with little plastic ducks banded to my breasts. Don’t worry Mom and Dad – I had clothes on!

Billy Goat (another favorite camp name) poignantly spoke about her identity shifts. She said that cancer took part of her identity away because she could not hike, climb, and experience the outdoors the way she had before. It was this trip that made her feel like herself again too. Hoops (a talented hula hooper from LA) nailed it when she said that on this trip we all “reclaimed our identity” by having the type of experience that many of us lost as young adults with cancer. The fresh air, the physical strength, the insatiable appetite, the laughter in the air at all times—it all made us feel young and invincible again.

As far away as cancer felt in the Colorado Mountains, it also felt up close as I pulled through some pretty intense fear on the ice. There were two times during each climb when I was afraid. The first was right at the start. There was something about leaving the group and going off by myself up the mountain that was reminiscent of the beginning of the cancer journey. After diagnosis, I felt a flood of love and support from my community, but the night before my port surgery and first chemo infusion I remember feeling completely alone. I was the one who had to mentally prepare and endure the treatment. I was the one who had to figure out exactly how I would find the courage to face and then persevere through a marathon much longer than the seemingly endless thirty minutes it took me to get to the top of a climb.

The second moment of fear was about three quarters of the way up. I would panic. The higher I climbed, the quieter it got, and the more dangerous it felt. Despite fatigue and self-doubt, I had to summon something inside to keep going. I told myself it was okay to stop, that with some patience, creative thinking, with another look around, I would find that next step. It might not take me far, but it would take me one step closer.

Often, the way forward was a leap of faith. I wasn’t sure my footing was sturdy. I wasn’t sure the pics were completely secure, but at some point I had to trust the mountain and myself. It felt so good to be totally immersed in a fear other than the fear of cancer. It was a primal fear, an immediate fight to overcome an extreme mental and physical challenge, and it kicked that cancer fear’s ass to the ground. We joked about how much cooler it would sound if we died from ice climbing instead of cancer (I know, dark cancer-survivor humor).

Cancer makes one vulnerable, which leads to a world of deep personal connections, even within a five-day time frame. One night my friend Zeus, who had brain cancer, told me that he could not go back to his previous job because he no longer had the same cognitive capacity. I told him that if he couldn’t lead with the brain, to lead with the heart. Zeus, along with all my other FD friends on the trip, opened up their hearts and let the people and the mountains in to heal parts of us still in pain. Our group grew closer every day, not just because we knew what it was like to lose our hair and endlessly wait for scan results, but because we all knew one very important thing: that although each of us would find a different path up the ice, the only way up is to lead with the heart.

There were times when each of us had to stop mid-climb, not getting to the top. The one exception was Muffs, ice climber extraordinaire, also apparently a good baker (Muffs is short for Muffins). Coming down mid-climb was hard for some, like me, who want to be perfect at everything. In these moments, I was reminded of a story about my grandfather when he had cancer. At one point he said to his doctor “I’m too tired, too sick to keep fighting.” The doctor responded, “Then let me do the fighting for you.”

“I’m ready to come down,” I said at one point. Feeling defeated, my belayer slowly lowered me to the ground. I was almost to the point of tears.

But then I remembered something that might be more important than any other lesson the FD trip has given me—to know when it’s time to stop fighting, to fall back on my support network, and let others hold my burden alongside me.

So to all my new FD sisters and brother: Fuzz, Snowball, Hoops, Zeus, Upbeat, Muffs, Spokes, Eris, Icey, Lucy, Billy Goat:

Climb on, lead with the heart, and when you need to stop, know that we will all be here to catch you.

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“Leave the gun. Take the cannoli.”

It is one year since I walked out of my last radiation treatment, into the California sunshine, moving from the life of a patient to the life of a survivor. There are so many signs that I’ve moved on– my hair is longer, my scars have faded, and my children are growing up before my eyes. In other ways I’m amazed at how up close and threatened I continue to feel by cancer.

A couple of weeks ago my sister and I flew down to Philadelphia to visit my father in the hospital. He had been transferred there from NY for a specialized procedure (which he did not ultimately need) following his recent surgery. While it was not an ideal circumstance, the three of us did share quality family time together. He offered us some ice chips; we fed him Jell-o. Due to some wifi and ipad challenges, it took two days for my sister to stream The Godfather, my father’s favorite movie. I tensed up listening to the gunshots in the opening scene. Like the mafia, cancer strikes when you least expect it.

The visit really should have been all about my dad, but being in the world of constant needles, gloves, Purell, and pain medication triggered some post-traumatic stress. To the nurses and doctors attending dutifully to my father, I am a healthy daughter of a cancer patient. They have no idea that not so long ago I was the one hooked up to the IV pole, with my healthy father sitting by my side. I found myself wanting to scream out to the doctors, Hello? I need your help too! I AM NOT RECOVERED! I am so desperately terrified of my next scan! Why is nobody helping me?

To my friends and family I want to sound a similar alarm: Just don’t forget people. I am in danger! Just like Don Vito Corleone, the Godfather, (and my doctors) I’d like to be the one to order some shots.  Then, everyone else can feel for a moment what I feel alone, every day, and twice a year inside a cold, scary, PET/CT scanning machine. It’s so utterly awful and selfish to think that and yet I feel such relief admitting it.

My father is the opposite of selfish. He never asks for anything. He only wants for it to be warmer outside so he can sit in the sun. If only something like that were enough for me. I wish my recent, clear PET scan would just be enough, but a clean scan cannot tell me what I so desperately want to hear from my doctors– that the cancer is without a doubt gone, dead. BOOM!

Every three months, I return to the revolving hospital doors, and wonder how I am going to keep up the stamina to face the threat of cancer. If only it were as simple as carrying a gun to protect me.

Stage direction: Rapidly dividing cells invading my body. (Gunshot – BOOM! BOOM! BOOM!)

No more mammograms. No more breast MRIs. No more PET scans.

Peter Clemenza, old friend of Don Corleone, leaves the crime scene and delivers an alternate version of his famous line:

“Adina, honey. The cancer is gone. You don’t even have to worry about eating sugar anymore. Leave the gun. Take the cannoli.”

 

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Why Walking 39.3 Miles Felt So Good

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At mile 24 we continued to pound the pavement. After waking up at 4:45am, making our way up and down both the east and west sides of Manhattan, with spectacular views of the New York City skyline and Lady Liberty, after crossing the Brooklyn and Manhattan Bridges, we could finally see Randall’s island, day one’s final destination. I had about three blisters at this point (after reading my favorite tag line: “Every blister saves a sister!”). With my legs wobbling and shin splints burning, I watched my sore feet take one more step, then another step, and knew for sure that I could accomplish the goal: 39.3 miles in two days.

I knew I could finish for two reasons. The first was my team.

Sara: Before my older sister recently moved back East, she said good-bye to ten years teaching first grade at a school she loved and that loved her right back. In lieu of a generous send-off gift, she asked the school to donate toward the Avon Walk. Then, on a recent training walk, she spontaneously said, “Come on sister, I’m going to buy you a new pair of sneakers.” Having her generous and loving self by my side, carb-loading through the city, meant the world to me.

Sherri: The best memory from this walk was watching my sister-in-law twerking (provocative dance) with an Avon volunteer on the sidelines. This happened around 7:30 am on day two when preserving any energy seemed important to the rest of us. Sherri’s vivacious personality and indomitable spirit kept us all going.

Carley: Carley and I reconnected after I was diagnosed. She is a great example of how a life challenge can bring friends together again. In between teaching middle school Science to 7th and 8th graders on Friday and Monday, Carley walked the 39.3 miles with us, on very little sleep, and showed absolutely no signs of any physical discomfort.

Dan: This old and dear friend of Ian’s has now officially reached brotherly status.  I have always felt like Dan would do anything for me, but walking 39.3 miles and camping (which involved sleeping in a tent with a stranger) was not something I ever imagined. My only regret is that I didn’t make him wear a pink tutu.

My dream team, four people from different places in my past and present, four people very, very different from one another, came together and made this experience one of the very best of my life. I cherish each of them, the memories I have of them walking by my side, being in the thick of a challenge that very symbolically represents what it feels like to go through cancer treatment.   THANK YOU, with all my heart. Thank you!

And about that second reason…the things that I feared the most in the end were the things that kept me going.

In the weeks and days leading up to the Avon Walk, I worried about the pain, the fatigue, and whether or not I could actually carry out this physical and psychological journey. I imagined how it would feel to give up and how I would explain it to everyone. But while in the most challenging stretch between miles 24 and 26, I experienced a kind of euphoria.

I loved the pain. I embraced the blisters, the sore feet, and the muscle aches. It felt so darn good to feel my body walking and walking and walking and walking…and still walking. Every sign of fatigue, every twinge of discomfort was a voice saying loud and clear: YOU ARE ALIVE. Look what your body can do! You haven’t even been out of treatment for one full year and YOU, yes you ADINA SCHECTER, can walk 39.3 fucking miles in two days. You can do this! You are doing this.

After coming back from NY today, I picked the girls up early from school. They were very excited to play with my sleeping bag, especially when they put me in it, zipped me up, and on each side of me, came close to my face to give me a kiss goodnight.

“Let Mommy sleep,” says Yael. They were so close I could feel their breath. I let my body completely relax under their four little hands pushing down on me. I thought about all the names and faces on shirts and pins of mothers who have died from breast cancer. I ached for them in a place so beyond anything I could feel from a long walk.

“Time to get up Mommy,” Yael demands. Each girl reaches in for a hand and pulls me up, out of my cocoon and back into the world. “Let’s go.” Yael is leading the way to our “campsite” in the kitchen, a much better place to look up at the stars. As we walk, I envision the three of us, maybe twenty years from now crossing that finish line together.

 

 

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The Brilliant, Undeniable Flash of God

My father has recently been diagnosed with esophageal cancer. He just started a five-week course of chemotherapy and radiation treatment to shrink the tumor, to be followed by surgery. The cancer has not spread, and so we are all hopeful that he will join me on the other side of this journey, in remission.

This is not the first time my father has faced a life-threatening illness. Away at summer camp when he was six years old, he contracted typhoid fever. He often recalls watching his mother outside the hospital room, and how the doctor told him that if he cried, he would not let him see her. I cannot really imagine a scarier experience than that moment, 60 years ago, my dad as a little boy holding in his tears, trying to be brave even as he overheard the doctors say, “He is probably going to die.”

Coming so close to death at such a young age, my father sees his own life as a miracle. When I told him I felt lucky to live to 35, he told me, “I was lucky to live to seven!” If there is anything my father has taught us it is to take hold of the miracles in our lives, both big—his survival, my survival—and also the small— a deep human connection, an empathetic exchange, a moment when it almost seems like God has opened up a divine space for people to take care of each other.

My father, the rabbi of 43 years, thrives in these interpersonal, vulnerable moments. He has a unique gift for helping people cope with loss, trauma, and all kinds of life struggles, for finding words that console, or challenge, or inspire. I’ll give you just one example among a thousand, this from a published piece.

Sean lost his brother in the World Trade Center on 9/11. Sitting on my father’s living room couch, meeting for the first time, my father and Sean discuss their beliefs, their faith in God. Sean recalls my father saying “he believed in God very intermittently. To him, life was like a lightning storm. For the most part he found belief to be very difficult, but every once in awhile there are brilliant, almost violent flashes, where God is so real and present it’s undeniable.”

I happened to read these words just days before my father was diagnosed. At the time I was in Spain, an ocean away from him. I wondered if when talking to Sean he thought about the moment his six-year old body’s 108-degree temperature broke—the brilliant, undeniable flash of God’s presence.

How can I possibly find the words to comfort the man who is always the one to comfort?

“I’ll be with you every step of the way, Dad. That’s what you told me the day I was diagnosed.”

My mind swirls with the images he will have to face: IV chemotherapy, the radiation monster, post-surgery bandages. Will God save my father again? How can I save him from all of this?

A story comes to mind that my father tells again and again, one I shared in a post during my own treatment:

“God extends a string of faith around the world. He commands a messenger at both ends to shake the string violently throughout our lives.”

A six-year old gets typhoid fever.

A young man dies in a terrorist attack.

A young mother gets breast cancer.

“Many will try to leap up and hang on to faith and hope. Some will fall off but always try to cling back on again.  Others will fall off and walk away in despair. Some will fall off, but then help others to have the strength and courage to leap on again, and again, and again….”

It is a story about God acting in the world, stirring our lives and challenging our faith. In my version of the story, however, God isn’t to be found in the shaking string, in the chaos of tragedy and adversity. Rather, for me God becomes present in those moments when people help each other find the strength to carry on, to leap back onto that string of faith.

My father, always the helper, now feels the violent shaking of the string. But there is a precedent in our family for surviving cancer—my own journey. There is reason to have hope.

“Adina, you give me courage.”

Hearing those words spoken from a father to his daughter, I feel the brilliant, undeniable flash of God washing over me.

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Dear Lisa Covington

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Dear Lisa,

Our time together was fleeting, but all of the women on our Little Pink Houses of Hope retreat can attest to the powerful connection we formed last September on Lake Tahoe. Every time I look at the photo of the seven of us, all living with breast cancer, I see light, strength, and hope, all of which emanated from you.

On the second night of the trip, you sat down next to Ayla, not even one year yet and said “I want to play with the baby!” We ate our dinner together, feeding Ayla beans and rice, and sharing our stories. You were 31 with two young sons when diagnosed; I was 33 with two young daughters when diagnosed.   I was not even through with my first active treatment; you were about to start another round of chemotherapy after living with metastatic breast cancer for thirteen years.

You were protective. Before giving me too many details you said, “I don’t want to scare you.”

I remember thinking, “If this is the path I will follow, I want to be just like her.” I felt as if I was absorbing your resilience, your positive outlook, your zest for life. I remember thinking: “She is living my worst fear and continues to cherish her life every day.”

On our way to yoga one morning we stopped to get something to eat. We poured over the menu deciding which sandwich seemed like the best idea (or the worst idea) before yoga. I remember thinking how healthy you seemed, how ravenous your appetite, not just for food, but for life. I remember laughing with you every five minutes.

I will hold these memories as I hold my daughters in the dark before they fall asleep.

From you, I’ve learned the power of just being yourself throughout illness, of forging community to garner support, of laughing just as much as crying, of believing in love and happiness while grappling with loss.

When I learned about your death, I sat at my desk alone, paralyzed, not wanting to make another move, not wanting to live in a world where you would have lose your life to cancer and leave your beautiful family. The only thing to break me out of it was to imagine you sitting there with me. We’d cry. We’d rage. We’d hug. I would tell you that although the world has lost so much, the loss pales in comparison to what the world has gained because of your life.

Then, feeling the ever-present and thinning line between life and death, I knew you would help me summon up the courage to find a way out of this moment. I heard you say:

“Okay honey. We might not be in Tahoe, but let’s go get the best sandwich we can find.”

With love, always,

Adina

 

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