The inner and outer world of a cancer survivor

Typing in the Dark

The girls have just gone to sleep and I crash down on my bed. Lying on a heating pad in the dark, I hold up my phone and begin to type in the search field:

“S y m p t o m s   o f”

Don’t do it Adina.  Stop typing now.

“m e t a s t a t i c”

Adina, if you go down this road, you will be up all night worrying. 

“b r e a s t   c a n c e r”

You can still stop now.  It’s not too late.

“i n   t h e   s p i n e”

You will be up all night.  You will feel every symptom you read about. You will not know whether you should worry or not.

“Symptoms of metastatic breast cancer in the spine.”

SEARCH.

You idiot!

  • pain
  • tingling
  • numbness
  • trouble urinating

Oh noTossing and turning for most of the night, my mind spirals into the worst-case scenario.

Cancer survivors lead two parallel lives: the brave face we present to everyone on the outside, and the inner spin we experience under the surface, in the quiet of night, alone with our thoughts, paralyzed by a sense of our own mortality. We have our hair and eyebrows back, but we are learning how to move on, to be ourselves, to appear normal even though we cope with intractable fear. As I approach my first cancerversary, one year since diagnosis, I try to find my footing in my life as a survivor.  In my best moments I’m living freely, in the present, patiently appreciating Yael’s ten-minute pajama process.  In my worst moments, I put my children in front of the TV so I can research what it feels like to have metastatic breast cancer in the spine.

The Backstory

For two months I have experienced lower back pain that seemed to start from wearing a pair of heeled boots, exacerbated by a cross-country move and from picking up increasingly heavy children throughout the day.  Pain, which used to be something I tolerated well, something I would brush off as nothing for 35 years, now signals a potential warning.  After consulting my new East Coast oncologist, equally as cautious as my West Coast one, but with a more conventional wardrobe (read: no fishnet stockings), she says: “I think this is an injury, but I want to do some imaging to make sure.”

The morning of the MRI I get the girls ready for their day, struggling to focus on the parenting tasks at hand.

Outside: To any passer-by I am just a young mother with a cute pixie hair cut driving my toddler to pre-school.  I stop at the red light, feeling the weight of already being up for four hours with young children.

InsideI feel the weight of fear. Fear that the next time it won’t be the boots that cause the pain, but metastatic breast cancer.  I imagine reading the MRI technician’s facial expression while she looks at my MRI.  Haunting memories of my biopsy come flashing back.  The technician foretold the story when she said: “I will be thinking of you.”

After I get home, I send off a work email.

Outside: I just had lunch and now am typing up “next steps from our meeting.”

Inside: I just lay my head down in the cave of an MRI. The idea of cancer in my spine is mind-numbingly terrifying. I fell asleep from sleep deprivation amidst the battle clatter of a massive, godlike machine that seems to dictate my fate.

After getting the “clear of cancer-no mets” verbal from a very well-connected doctor friend one hour post-MRI, my father and I celebrate in a french café on the upper east side.  I remember when I called my dad a year ago to tell him I had cancer.  Before getting off the phone he said: “I’ll be with you every step of the way.” How I wish this could be our last step.

How can I even be the same person now that I was two hours ago?  Two hours ago I was planning my death.  Now I am back to planning my 35th birthday.

 Letting Go

The next day I go to a yoga class.  My back pain is completely gone, which makes me realize how the psychological turmoil affects my mind and body alike. After each clear scan I mark the time by renewing my health and trying to find my balance again.

Outside: I raise my arms for the first salutation, in step with all the other women in the room.

Inside: I am vulnerable, worrying about revealing the scar under my right arm.

The image of me scrolling through the symptoms list comes to mind. Deep breath in. 

I’m so terrified of what I cannot control.  Deep breath out.

What if I cannot hold it together?  Deep breath in.

How do people live in peace alongside life and death? Deep breath out.

I swan dive down and let my head hang low, the gravity, the weight of the world pulling me toward the earth.  I let all fall to the floor, down my legs and toward feet that now, after bouts of neuropathy, have sensation.

And then I look up at the woman in the mirror to greet her.

Every moment is the chance to start again, to let go of fear, and to live.

Posted in Uncategorized | Tagged , | 2 Comments

Motherhood and Memory

Everyone should have a mother for a long time.  Tonight, after coming home from work and hugging both my girls, I leaned into my own mother and let her hold me up.  Even after everything I’ve been through, part of me still feels safe from any danger when I’m in my mother’s arms.

I just celebrated my dear friend Rachel’s 35th birthday, alongside her closest friends.  One of them is an old, special friend, Maureen, who like Rachel, lost her young mother to cancer.  Maureen came to dinner ready with a series of birthday questions for Rachel, one of which was “What is your birth story?”  Rachel shared the story, which was told by her mother many times when she was alive, but also in great detail in a journal she wrote in her last years.  We were all moved hearing Rachel speak her mother’s memory.

Many women affected by my blog are not actually cancer survivors, but those who lost their mothers too soon to a terminal illness.  I hope that my writing opens a window into what their own mothers might have thought, felt, and possibly kept from them.  The truths I speak, however painful, might bring them closer to their mother, to what their mother experienced, and ultimately help them move through and survive their own fears of death.  I am more connected to those women now and wrote about it in a previous post called “Look for Signs of Me.”

It is with them, all of you, and my daughters in mind that I share these thoughts with you today.

As a mother who has survived cancer, I wish I could say now that I revel in every mothering moment, that every time I look at my children I thank my lucky stars that I am alive and able to be there for them. But just like any other parent, I have moments when I want to shut down, escape, or crawl into bed with the covers over my head.  I try not to feel too guilty about this.  I often tell myself that it is good that I am able to get frustrated with parenthood – it means I am healthy and able to take all the good stuff for granted.

On the other hand, I have moments that most mothers do not have.  Every time I look at Ayla walking, who is now 15 months old, I am in complete awe and gratitude that I lived to see this milestone.  I am also a little angry. This is supposed to be a time when I only think of beginnings.  As she takes her wobbly steps, arms up, beaming a proud smile, it reminds me that I am not only a mother who had cancer, I am such an incredibly young mother who had cancer.  There is so much more I am supposed to see without having to worry about whether or not I will live long enough to see it.

I recently disclosed a dark thought to my mother, one that has been plaguing me for a while.  I told her that if the cancer is going to come back and kill me, I hope that it happens soon, before my daughters really get to know me, remember me, and lose me.   I immediately regretted saying this to anyone, especially her, but through her tears she reassured me:

“No, Adina.  That is not true.  Not at all true.  Their lives would be so much richer for their memories of you.”

I was grateful that my mom did not give me a “don’t worry, honey, you will be fine” response because just like the radiation monster, you cannot tell people that their fears and worries are not real.  You only can help them cope and see their fears in a new light.

I knew my mother was right.  I thought of all of my friends who have lost their beautiful, loving mothers and how not one of them would trade anything for the memories they have.  Those memories hold them up every single day, just as my mother held me up tonight.

So here is a memory for Yael.  Someday she will read this and while I know life is uncertain, I am going to bet on being alive to share it with her.

It starts out as a tough parenting moment, that time of night when we stare at the clock and daydream about our children going to bed on their own.

We have just moved across the country and are staying with our close friends in Boston.  The move has been particularly hard on Yael. She misses her bed, her friends, the only world she has known. The end of the day is often the toughest – she is tired, testing us at every step, and emotionally on edge.

After tripping through every wrong parenting move possible, I finally pull Yael into the bathroom to brush her teeth.  As I squeeze her toothpaste out with one hand, the other holding up her limp body, she starts to cry. Something about her cry sounds desperate.  I get down on my knees and get close to her.

“I want to go home,” she says.  She is no longer a toddler trying to get her way out of bedtime.  Her tears look grown up.  I know that she expresses herself honestly.  I know it is right to stop pushing her to do the next thing.  So there we are on the bathroom floor of our friend’s house.  Yael sits in my lap with my arms wrapped around her tiny body.

I hold her. I tell her that I will be there for her.  But I am also at a loss for words. Her sadness penetrates my being in loud, crashing waves on my heart.  I know that she echoes something I’ve felt now for awhile—that even though I will live in the house I grew up in from birth to college, that even though I will have my own mother every day, I will never be able to go back home either.

In this moment I am profoundly aware that there is nobody else who can comfort her like her mother.  Just me.  I feel alive in my body, my blood moves, the warmth emanating from my skin to hers.  I think about all the times she will break down in the bathroom and need her mother to hold her.  I hope I will be there every. single. time. until I am old, old, old, but even if I miss one time or a few, this memory is there for her to remember how it feels.

Posted in Uncategorized | Tagged , , , | 1 Comment

I am in Love with my Editor

Right before my first chemo infusion Ian sat at the end of my hospital bed, out of nurses’ way, as they kept adding different pre-medications to my IV. Both our jaws dropped when we saw the bags of chemotherapy drugs. The first one would be slow-pushed through what looked like a giant version of the medicine dropper we use to give our children amoxicillin.

“Weapons of mass destruction,” I said to him, looking at his wide eyes as he was taking this all in.  “Ian, I cannot imagine what this must be like for you. I would be so terrified if I had to watch you get these crazy-ass drugs injected into your body right now.”

 His response surprised me: 

“As difficult as this is, as much as I wish you didn’t have to be going through cancer treatment, I feel like my life will be richer—both our lives more meaningful—for having experienced this. I think it will make me a better person.”

I had my computer with me that day and had been typing up my thoughts, already trying to capture all my swirling emotions.  I glanced at the computer on the bed and asked a question I would ask many, many more times over the next eight months: “Will you read my blog post before I publish it?”

Without a word Ian grabbed the laptop and started reading, highlighting, deleting, moving paragraphs, adding phrases.  

“Stop!  How could you delete that sentence?  It describes something important.”

He looked up from the silver MacBook.  “Because it had nothing to do with this post.  That sentence belongs in a whole different post.”

Hmph.  He was right.  “But can’t you at least react emotionally to that sentence?  How could you just delete it without telling me how it affected you?”

He looks up again from the screen, this time with frustration because he was already figuring out a much better transition to the next paragraph.  “If you want me to be your editor, then I will be your editor. I cannot be both your editor and your reader.”

Many months later, right after we found out I was in remission, I sat Ian down next to me, held his hand, and said: “You need to go to Spain after I finish treatment, by yourself.   Your life has been on hold for me this past year.  I want it to move forward.”  Ian, my loving husband and unbiased editor, a man who has always worn many hats (literally and figuratively) in his life will leave for Spain in a few days, flying solo, to conduct the research for his PhD in music.  We were all supposed to go with him, but my breast cancer threw a wrench in our plans.

I often make jokes about how lucky he is to get a break from the daily parenting grind.  How many parents of young children get to enjoy tapas and siestas in Spain?  But Ian’s face falls when I make these remarks.  I have come to realize there is a lot I don’t understand about what he experienced since the night I first announced the lump’s presence to him. 

For months he watched his wife, the mother of his children, endure cancer treatment.   I can only imagine what it must have felt like every Monday when I closed the door on him and the girls to spend the day at the cancer center.  One day I remember him saying, “Good-bye mommy.  Go get your life-saving drugs.” 

He never asked for a break from the early mornings and long hours of walking Ayla up and down the stairs.  He doesn’t want a break from teaching Spanish to Yael and getting his girls dressed every morning in mismatching outfits.  The connection he forged with his two little girls while I was waiting in hospitals and doctors’ offices is beyond my reach.  He’s worked for several years to make this trip happen, but he will terribly miss his family.

So there had to be a post about Ian, the father home with his two little daughters, the husband nursing physical and emotional wounds from cancer, and my steadfast editor.

See you soon, my love.  Thank you for taking care of us.

 

[note from the editor: Am I allowed to edit this one?]

Posted in Uncategorized | 3 Comments

The Parting of the Cancer Sea

On February 28th I sat at my computer trying to concentrate.  Twenty-four more hours to wait for my biopsy results.  My life at a crossroads.  It was late afternoon, right before the girls would come home. I got up to go to the bathroom and when I returned I had a voice mail on my phone from an unknown number.  Could it be my doctor with the news already?  I listened to the message. In an exasperated voice, losing her breath, she announced: “Adina, we need to talk.  You have breast cancer.”

My hand trembled as I wrote down a name and number—I was going to need an oncologist.

Reflecting on that moment eight months ago, I want to reach out to the old me sitting alone at my desk, alone in my apartment.  The palpable absence of her children. The silence filling the empty high chair. The toys lying motionless in the middle of the floor.  The baby blankets folded in cribs without babies. How she kept repeating the word “cancer,” over and over in her mind.  Impossible to feel the gravity of what this would mean for her life.  No one to console her. At least in that moment, she—I—felt utterly alone.

Today is my last day of radiation, the end of my cancer treatment. Looking back, it’s hard to imagine that we are still the same person—the woman at her desk seems almost a stranger to me, but I wish I could take care of her now that I have the wisdom to help her.

I look down at the patient bracelet on my wrist. Throughout chemo, surgery, now radiation, I’ve worn dozens of these bracelets. I even came to like them.  They are markers of this experience that are not permanent.  I enjoyed cutting them off.  Sometimes I mutilated them before throwing them away.

Lately I haven’t wanted to take the bracelets off.  Radiation brought a new patient bracelet every day, five days a week.  In these final days of treatment, I catch myself still wearing it on my drive home.  Later in the day, working at the same desk where I was diagnosed, I keep it on. I feel comfort seeing and feeling it there.

As much as I want to let go of being a patient, I can’t help but want to hold on the identity I have forged these last eight months.   It’s going to take time to adjust to not having cancer. With every tiny twinge of pain in my body I panic: “It’s the cancer.  It’s back!” That is why I wear these ridiculous plastic bracelets all day, reminding me that I am in treatment.  I constantly have a team of experts watching over me.  I can’t just cut the bracelets off any more than I can move on from who I’ve become.

As my treatment comes to a close, I want to feel more excited, proud, relieved, but most of the time I just feel sad about what my family, friends, and I have had to endure.

It is not only through the eyes of those closest to me, but through a stranger’s perspective that allows me to feel the weight of what I’ve experienced. I used to see one of my neighbors, a young mother with three children, on my daily walk with Ayla. I never spoke to her about my illness.  We would always exchange that all-knowing look of understanding that bonds all mothers.  Recently, we finally connected at a neighborhood gathering. She told me about how one day she saw me, with hair, walking with Ayla, and the next time saw me I was wearing a scarf.   Seeing it through her eyes, somehow the pain of that sudden switch feels more tangible—the abrupt transition from healthy to sick.  It is at the end of all of this that I can finally grasp the trauma of the beginning.  I found one of my old hairs recently and I cried harder and longer than I did when it fell out.  I just now mourn the loss of breastfeeding and have flashbacks of pumping breast milk with blood after my biopsy.

But similar to other moments when I’ve been stuck, there is one little lady who always seems to move me forward. I lay in my bed with Yael one recent, early afternoon.  She had asked me if she could take her nap with me in my bed.  Normally I turn down this request, but I wanted her to stay.  She fell asleep next to me and I listened to her breathe.  Full of life, sound asleep, she lay there in our giant bed, wrapped in the blue dress Ian brought her back from Morocco.  It was the opposite feeling of the day of diagnosis, when I had so felt her absence.  Now I, her mother, the one who gave her life, felt like she was literally breathing new life back into me.

And so, with her help and all of yours, my readers, I take a leap of faith into a new era of my life. I’m ready. I walk through a maze of corridors to finally exit the building with the scary radiation monster.  I walk with my usual stride—hips swaying, lost in thought, never completely sure of where I am going.  The bracelet feels different, now just a piece of plastic, and I suddenly want it gone.  I turn the corner and see the doors of the hospital ahead of me.  I spot a trashcan near the exit.  When I get there I take a minute.  Pause.  Close my eyes.  Take the bracelet off.  Hold it in my hand.  I feel something rising within me, creating a new path between the the past and the future.

And then, just as Moses lifted his arm to part the Red Sea, I chuck that sucker right in the trash, and bust open the door to the world that awaits me.

Posted in Uncategorized | Tagged , , , , , | 7 Comments

Out of the Darkness and into the Light

“What are you scared of, Yael?”

Yael was standing way too close to the laptop screen, trying to be as close as possible to my sister Sara, whom she adores. On a video-chat with her Aunt Sara and Wesley, her cousin, Yael answered with a serious look,

“I’m scared of monsters.”

“You know, Wesley is afraid of monsters too, and I tell him that whenever he sees a monster to just say ‘Monster, you really should be a nice monster because if you are a mean monster then nobody will play with you.  Nice monsters have lots of friends and are fun to be around.’  You see, monsters can change if you just explain to them why they should be nice.

Yael’s face lit up, and frankly, so did mine. My tactic of insisting, “monsters are just pretend” had not been working.  It doesn’t help anyone to tell them that their fear isn’t real. Better to help someone cope with their fear, however rational or otherwise.

After this virtual encounter, I lay down next to Yael’s bed on a big, brown turtle pillow on the floor.  We both looked at her closet and told the monsters why they should be nice.

And both of us felt so much better. 

What I didn’t tell my daughter is that I’ve been dealing with a new monster of my own.

It is my second week of radiation therapy. I lie half-naked on a long table, arms up, alone except for the massive, powerful machine growling all around me.  Motionless, frozen, I stare into its dark mouth as it shoots gamma rays into my right breast.  It is unsettling not being able to see what is going into my body—the insidiousness about radiation lies in its invisibility.  As the monster spins and snarls, I think the same exact thing every time:

“You should be a nice monster.”

But it doesn’t work.  Even though it is part of my treatment, the machine scares me. It is a giant, metal monster, and I don’t think there is a way to make it nice.

Doctors and survivors downplay radiation because its side effects are not as intense as chemotherapy’s and the recovery is not as hard as surgery.  However, for me it comes at the end of a long road, after chemo and surgery have beaten down my body for eight straight months.  I don’t feel any pain from the radiation yet, but I don’t feel right either.  Unlike chemo, where I felt nurtured by nurses and friends by my side, radiation is isolating.  Though it only lasts a few minutes, time slows down in that room with the monster.

When I walk out of the hospital the natural sunlight feels so warm and friendly in contrast to the scary radiation room.  I take a deep breath and do what every cancer patient does as she emerges from treatment: pick my head up and try to go about a “normal day.” 

The parking attendant comes over, takes my validation card, and inserts it into the machine.  I usually give a somewhat curt “Thank you, have a nice day,” but today I realize that he always comes to help me even though I could just put the card in the machine myself.  Today I look up into his beautifully human face and say, “It’s so nice that you come over to help with the machine. What is your name?”

He proudly holds up his name badge: “Haile.”

“Thank you Haile.  Since I will see you every day, it would be nice to know each other’s names.  I’m Adina.”

Haile reaches out his hands to envelop one of mine and holds it for a few seconds.  It is his way of saying thank you for noticing me but also acknowledging what I must be going through.

This moment, this feeling, transports me into one of my favorite books I read with Yael: South by Patrick McDonnell. One of the beautiful images from the book is a cat reaching out his paw to help a bird find his way back to his flock, as if to say “trust me; I will take care of you. ”

As I drive away, I realize that Haile is going to be one of the people to help me through this final chapter of my cancer treatment.  I can still feel my hand in his.  The human contact so palpable in contrast to the great big machine monster moving around me.  I am relieved that I will see him tomorrow, and the next day, and the next until this is over.

One day Yael will face a monster that is not nice and will not change.  I hope she too will look up from the fear to see that there will always be people carrying her through.  Sometimes it will be her mother or friend or Aunt Sara…but it might also be someone just crossing her life’s path for a brief time period…just like Haile.  Taking her out of the darkness and into the light.

 

 

 

Posted in Uncategorized | Tagged , | 4 Comments

What Not to Say to Breast Cancer Patients (or to anyone)

Let me preface this by saying that at some point you probably said one of these things to me or to someone else.  Please don’t feel bad about that.  You didn’t do anything wrong.  I just thought it was worth sharing this with the world after hearing similar perspectives from other breast cancer patients.

1.     “You look really good without hair.  I would look terrible bald.”

Many women have said this to me, and while both may be true, something deep inside of me cringed every time I heard it.  Telling a cancer patient “you look great” is very nice, but try to stay away from the bald thing.  It’s just a sensitive, traumatic experience for most women. 

 2.       “Life is fragile for all of us.  Any day something bad could happen to me too.”

I understand the intention of this comment.  When you are in the presence of a cancer patient, you feel vulnerable and want to connect. But it doesn’t make us feel better to know that something could happen to you too.  That is a terrible thought. Also, cancer patients face mortality and fear of the future in a very different way and it is frustrating when that is compared to a healthy person’s general fears about death.

 3.     “I know someone who had breast cancer…and she died.”

 This I’m not explaining.

 4.    “How did you find your breast cancer?”

This one actually doesn’t bother me, but many survivors have told me that they are frustrated by this question, especially from people who don’t know them well.  The question often stems more from a woman’s fear of getting breast cancer rather than really wanting to know about a breast cancer survivor’s experience.

 5.     “I’m sure you will be fine.”

 Oh how I wish this made me believe so!  There are statistics about risks of recurrence but the truth is that for each person cancer either comes back or it doesn’t.  I never know how to respond to this.  I am usually silent and about to cry.

 6.     “People only get what they can handle.  I would never be able to handle this.”

I did not get breast cancer because I am strong.  People who say this are terrified of getting cancer and want to believe it won’t happen to them.

 7.     “You can beat this!”

 I love the enthusiasm behind this, but let’s be real.  How exactly do I “beat this?”  The chemo beat it, but if it didn’t and I had six months to live, I would feel like I had let everybody down because I didn’t “fight” hard enough.  I know a lot of cancer patients use battle language, but that language gives a false sense of control over this unpredictable disease.

 8.     “Let me know if there is anything I can do to help you.”

 Yikes.  This one is harsh, I know.  I say this all the time and would have said this to myself.  Women living with breast cancer need help every day and they are not going to ask for it or “let you know.”  Instead of throwing out this vague statement, say something like  “I am making you dinner one night this week.  Which one?”  Or “I am babysitting for you this weekend.  What time?”

 On my last day of chemo a chaplain came in to see if anyone wanted to talk to him.  I could tell he was new, a little nervous, and so I invited him to sit down next to me.  He was unprepared, had absolutely no idea what to say, and had literally broken out in sweat. Awkward! Finally he just got up, wordless, and left.  My infusion partner and I exchanged a look and (bless his heart) burst out laughing.

There really are no perfect words.

 

 

 

 

 

Posted in Uncategorized | Tagged , , , | 4 Comments

Little Pink Shout Out

We came from all over the country: North Carolina, Washington, Wyoming, Kansas, Colorado, Texas, and California.  We arrived at North Lake Tahoe with our families—toddlers, young kids, teenagers, and college grads—in tow.  For many of us this was the first week away from an infusion chair, a radiation table, or an interminable waiting room.  Here was a chance to be with our children and partners without feeling like cancer patients.  Thanks to ten serving volunteers and especially to Jeanine Patten-Coble, founder and director of Little Pink Houses of Hope, seven women living with breast cancer got to experience a week of deep connection, joy, and reprieve in one of the most beautiful places in the world.

Little Pink organized a week of activities for us, from paddle boarding, fishing, and beach games to even a date night for the parents.  With tireless “Volunstars” by our side, we did things we just wouldn’t or couldn’t have been able to do our own. We roller skated with Rachel. We tossed water balloons on the beach with Christine.  With our very own, beloved Volunstar, Daphne, we went mini-golfing with a toddler and a baby in a stroller! Yael darted under the fiberglass dinosaurs and through the obligatory mini-golf tunnel, sinking her first hole in one! Ayla, for her part, laughed at an oscillating mechanical bear dressed as a sheriff.

But the magic of the week lay not with the bear or the beach.  As Jeanine sagely put it on the last night, “The meaning of what you just experienced is not about the lake.  It is not about the mountains.  Reflect on what it was that made this week special for your family.  Think about how you can carry that into your lives as you move forward.”

So here is my reflection.

I struggle every day to cope with fear.  Some days are easier than others, but most of the time, I wonder how I will live with the fear cancer has brought into my life.  Yael and I went to an informal devotional service on the beach that reframed this conflict for me. The theme of the service was how to embrace both the overwhelming joy and terror of life.  The pastor asked us to find a rock, meditate for a few minutes, and then think about all the hurdles the rock had to overcome before coming to this perfect place by the lake. Without ever mentioning the C-word, the audience understood the pastor’s intention.  Every day we feel both waves of fear and joy as we simultaneously hug our children and worry about the future.  Holding both emotions, seemingly oppositional, make us feel alive.

A few days later Yael showed me what it really felt like to embrace both terror and joy.  I wanted to have a morning just with Yael, when I would let her lead the way, choose our pace, and give her my full attention. The two of us found a quiet spot on the lake, away from everyone else.  We were talking, picking up rocks and tossing them into the water.  Kuplink, kerplank, kuplunk.  The rocks sounding like the blueberries in one of our favorite books: Blueberries for Sal.  Without realizing it at the time, we were enacting a Jewish ritual called Tashlikh, when, during the Jewish High Holidays, people symbolically cast their sins into a flowing body of water.

As I threw each rock, I thought about each mother on this trip: Andrea, Pamela, Danielle, Breck, Lisa, Michelle, and Christine.  Throughout the week I noticed the same look in our eyes.  We all just want the same thing for our children—to continue to be there for them. To live.

After some time passed Yael picked up a rock, threw it, and screamed: “AAAAHHHHHHH!”

We looked at each other.  I knew she was looking for a reaction.  She usually hears me say: “You need to be quiet.  Stop screaming.  You will wake up Ayla.”

But we were alone, not another soul in earshot.  I told her that sometimes it was okay to scream, and that this was one of those times.

So I picked up a rock.  She picked one up too.  In my body I felt all the terror and joy of the past year—of birthing a baby, of a breast cancer diagnosis, of watching Yael ride a bike, of waking up from surgery—and looked at Yael as I counted to three.

One. Two. Three.

“AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHH!”

Posted in Uncategorized | Tagged , , , | 7 Comments

On the Eve of Surgery

Dear Adina,

It’s me, Adina, the ten-year-old from the Run Adina Run post, the one who wears boxer shorts and tie-dye tank tops and listens to Bon Jovi, the younger version of you before you—we—had breasts or functioning ovaries.  I am the part of you that’s still ten. I am the kid who lives on in you.

Our childhood selves never leave us.  I live in and through you every day.  I experience life with you and quietly watch how you handle the world.  I know your surgery is tomorrow.  I know you are scared.  Watching you grow up I’ve learned that adults deal with fear much better if they get in touch with their inner child. So here I am.  

Thich Nhat Hanh teaches us to take care of our anger as if it were a child.  I think the same goes for fear.  Consider me, that ten-year-old version of you, afraid of what the adult you is about to experience. Picture me for a moment and be compassionate with yourself.  But compassion also means not descending too deeply into fear.

Yael will help you. The other day I watched you play with her after a long day of doctor visits.  You both drew on the sidewalk with chalk in your hands.  You were trying be a present mom, to let go of the day and to be with her.  But I could tell you were sad, drained, and worried. 

 “Mommy, do you want me to help you draw your flower?”  Yael’s question interrupted your trance.

 “Yes, I need some help,” you said, realizing this was actually very true.  Yael kneeled down and sat closer to you.  She drew a new color on your flower.

Then, with a preschooler’s insistence, she ordered, “Mom, stand up.” Slowly, laboriously, you complied.  “Walk backwards.”  You fell in backward step together. “Now buck like a chicken.”  Still walking backwards, Yael flapped her arms and cluck-clucked. “Come on Mom!”

In spite of yourself, she pulled you from your fog.  I laughed along, silently, as I watched the two of you walking backwards and bucking like chickens.  She really did help you. It was as if she somehow knew what you needed.  Let go, Mom. Don’t worry, Mom. I can help you snap out of it, and into this moment with me. It was the best! 

The ten-year-old you. The two-year-old daughter of you. We remind you to be present, not to worry, but instead to live mindfully. These girls—we—are helping you get out of your head and into the world. And to let go.

Now here you are on the eve of surgery. Let go.  Let the doctors do their surgery.  Let your family take care of you.  Let others do the worrying.  Tonight, just buck like a chicken with Yael, hug your husband and your baby daughter, curl up around a fluffy pillow, and fall asleep knowing that the child inside you is still with you, and that every single person you love is with you—this day, tomorrow, and all to follow.

Yours, or rather, you,

Adina

Posted in Uncategorized | 5 Comments

Closing the Chemotherapy Chapter

There I was lying face down in a massive machine, arms tucked in at the sides, trying to meditate my way through another breast MRI.  I was in the zone, imagining all of my friends whispering affirmations and placing a supportive hand on my back.  But that made me so emotional that tears and snot and drool started fogging up my only view out.   It was only a few days after my last chemotherapy treatment, but I felt the cancer walls caving in on me.

“Well, it’s about time you broke down,” my dad says. He holds my arm and walks me out of the basement floor of the UCSF cancer center. Why is it that after I receive the best possible news—that I am in remission, confirmed by a completely clear breast MRI—that’s when I start to feel scared out of my mind?

A few days earlier, as I sat in the infusion chair for the last time, I realized that chemo, however terrifying, brought with it a secure routine.  At the hospital café I would see John, a prostate cancer survivor, who would give me a hug and a kale smoothie.  I loved being cared for by nurses who asked about the girls as they unwrapped their supplies, accessed my port, and seemed genuinely interested as I disclosed the latest news about my bowels and anxiety level. The best part was seeing my oncologist click-clack over in her heels and fishnet stockings, always with encouraging news for me.

Then it hit me, a “holy shit” moment.  For five months I’ve had toxic chemicals flowing through my veins.   I had to gear up week after week for another dose of Taxol, even if my muscles weakened and I felt more tingling in my feet.  I believed the treatment worked but there was no certainty until the end. I had to stay strong but now I can let down my guard.

Certain moments trigger what can only be described as PTSD.

In preparation for my oophorectomy in a couple of weeks, I had to have a pelvic ultrasound.  I walked through the doors of the hospital where I gave birth to Yael and Ayla.  I watched a mom wheel out with her newborn.  At first I felt happy remembering both times I did that.  It is such an incredible moment leaving the hospital with a new baby.  During the ultrasound, the technician asked me when I got my last period.  I told her it was March, that chemo had propelled me into menopause even before surgery.  She said, “Well, that’s why it is hard to find your ovaries.  They shrivel up when you go into menopause.”

Shrivel?  Did you really just use that word in the presence of a 34 year-old woman?

My Dad escorted me out of the hospital crying over that one as well.  How is it that just NINE months ago I was that mom holding a new baby?  How could I have been the beacon of fertility and now have shriveled up ovaries? How did I grow a life inside my body while at the same time cancer spread all over my chest? It doesn’t make any sense!

After the breast MRI, my surgeon looked at me curiously as she watched tears pouring down my face: “You’ve had the best possible outcome,” she says.  “After your last radiation treatment, you will no longer be a cancer patient.  What are you doing all this for?  Whether you live for two or fifty more years, go enjoy your life!”

The “two more years” got me.  I wanted reassurance that there was no possible way the cancer would come back.  That after all the layers of treatment there was not even one small chance that a microscopic cancer cell could be left behind.  You see, the real courage is not facing chemo; it is moving past the fear of recurrence. As my surgeon sagely advises, it is recasting the fear into a positive, life-affirming energy.

Like other cancer patients, I need a little time to close the chemotherapy chapter.   We live with side effects not knowing if they will go away. We are told the cancer is gone but not that it will never come back.  It doesn’t just end when the needle comes out of the port for the last time.

Posted in Uncategorized | Tagged , , , | 1 Comment

“Look for signs of me.”

Similar to the period leading up to my breast cancer diagnosis, the past few days have been both grueling and terrifying.  On Wednesday, July 10th, I went in for another PET/CT scan, this time to determine whether my cancer had shrunk, disappeared, or spread.  I had to wait 48 long hours for the results.

My doctor called me today with the news: my scan revealed that I am in complete remission.  I am reveling in the love, hope, and relief from my friends and family.

But the story of the past few days begins earlier in the week…

After picking up my dear friend Rachel from the airport, we discussed our thoughts about life after death over—welcome to Berkeley—artisan pizza and beet-and-grapefruit salad.

Rather nonchalantly I offer, “while I think it is totally possible that there is something, I’m okay with there being nothing.  I’m not necessarily comforted by the notion of there being something else after we die.”

“Has anything changed for you ever since your diagnosis?” asks Rachel.

“Yes, well, I think about it all more.  I think about what will happen to me after I die.  The one thing that actually does offer some comfort is the idea of seeing people I know who have died before me.”

As I spoke these words, I realized that my thoughts have changed.

Rachel lost her mom to cancer ten years ago, right after we graduated from college. I got to know her mother, Christine, over the years Rachel and I went to Skidmore together.  I was with Rachel the day she found out her mom had cancer. I lived with her in Somerville, MA, during the final year of Christine’s illness, when Rachel took trips home on the weekends to be with her family.  I remember trying to be a good friend, but really feeling at a complete loss as to how to do that.

“What do you believe?” I asked Rachel.  “Has anything changed for you since your mom died?”

“One thing my mother told me was to look for her.  To look for signs that she is trying to reach me.  The thing is, it doesn’t really matter whether it is real—whether it is really her—but I see signs of her, things that make me think of her, and during those times I do feel her presence around me.  I feel somehow maybe she knows what is happening in my life.”

Since I was diagnosed, in some ways I have spoken more openly with Rachel about her mom’s illness than I ever have before.  I asked her about how Christine managed her own hair loss during chemo, how she communicated the details of her treatment with others, and more recently, what was going on inside her head during the hardest times.  I know I could ask other women in my support group, so why ask about Christine?  Because she is the one who knows me the most.  She is the closest person to me who has had cancer.  I need her answers.

The day after my scan I sat with Rachel at my kitchen table with tears streaming down my face.  Ayla was going to be home any minute.  We had a nice lunch spread out that neither of us could eat.  “How did your mom handle this?  How did she handle the waiting for the test results?”

What I haven’t told Rachel is exactly how much I have thought about her mom these past few months, especially when I am most afraid.  I imagine Christine giving me a big hug and bringing me to a table with a lot of really good food.  It is not even a meal she has cooked (even though she was a really good cook).  There is just this abundant feast and she is so excited to share it with me. We have so much to talk about.  We need to catch up on all the details of the past ten years.

Ayla is now home.  She is in her high chair eating cottage cheese and smiling at us.  My phone rings and it is the doctor’s office.  I bring the phone into the other room and once I hear the news I turn around and scream.  COMPLETE REMISSION!!!  Rachel runs over to me.  We hug and jump up and down. This moment reminds me of when I surprised her at the airport after she came home from study abroad to South Africa.  Screams of joy!

At first I thought it was a comforting coincidence that Rachel would be here when I got the scan.  But I told Rachel’s dad early on that Christine would be my guardian angel throughout this journey.

Look for signs of me.

Another old friend of mine, Deb, lost her mother to cancer when we were teenagers.  I remember taking a walk with her one starry night.  Deb looked up at a constellation in the sky and said: “I’d like to think that is my mom.” Just minutes before I posted my remission news, she wrote to tell me she was thinking of me.

I rocked Ayla to sleep tonight, leaned my head back in the rocking chair, and felt both Rachel and Deb’s mothers right there with us.  Like Rachel, I don’t care either if this is “real” or not, whatever real might mean.

With smiles on their faces, I imagined them speaking to me: “Take care of your daughters.  Take care of our daughters.  We won’t be seeing you for awhile.”

Posted in Uncategorized | 9 Comments