A Day In My Life

[I haven’t worked since I was diagnosed.  It’s remarkable to me how no day in my life is ever the same.  I have no set schedule other than getting the girls ready for, and taking them to, school every morning and putting them to bed every night.  In between, I cook, clean, write, read, research, talk to cancer and non-cancer friends, watch TV, occasionally hang out with people, pay bills, fundraise to colorectal cancer research and stare at the ceiling.  I honestly have no idea where all the time goes, a scary thought considering how limited my time is.   Here is a post about a day in my life that centers around my children, household obligations, cancer treatments and cancer more generally, all while trying to find signs from the gods above so that I can have the lonely peace I alluded to in my previous post.  This is a snippet of what my ever evolving normal is now.  I applaud all those who work while living with active Stage IV disease and even more so those who have young children; I know not working is often not an option; nonetheless, I admire those people’s ability to juggle work on top of the emotionally and physically draining life that is living with cancer.  Because of the length of this post, I’m breaking it into two parts.]  

On a Monday in early January, when the news of my new sobering prognosis was still fresh and painful, I woke up before dawn on the wrong side of the bed.  I was plagued by doubts and questions for which I did not have the answers.  Should I experiment with cannabis oil?  Should I be adding or removing certain supplements?  Should I be seeking a second opinion?  Should I see another oncologist altogether, someone who specializes in colorectal cancer, someone at the esteemed Memorial Sloan Kettering?  Should I be more aggressively pursuing laser surgery in Germany despite my oncologist’s and the lung tumor board’s opinion?  You know, the usual stuff that Stage IV people worry about, sometimes more vigorously than others.  That morning, for whatever reason, the worries were overwhelming. 

My younger daughter, three-year-old Isabelle, also seemed to have woken up on the wrong side of the bed.  The darkness outside seemed to match the darkness within us both.  Monday mornings during the winter are particularly painful with the kids as I struggle to get them out the door, knowing that we’ll be late as we always are, but I still strive to arrive at school within some acceptable limits on tardiness for kindergarten and nursery school.  But that Monday morning was exceptionally painful.  Isabelle was especially challenging in her refusal to cooperate and extreme clinginess to me.  When she becomes unusually clingy, I always think she knows something that I don’t, that she can sense the cancer growing inside me.  She was like that in December in the weeks before my troubling CEA test and damning scan.  I kept telling Josh that Isabelle sensed the growth of metastatic disease in me, but he told me I was being ridiculous, that such behavior could be attributable to any number of things.  Of course, I was right.

I always think of Mia as my stunningly beautiful and intellectual one, the kind of girl who will turn – and has already turned — heads with her captivating face and tall grace and astounds as she points to an animal in a medieval painting in a museum and declares, “That’s the Narwhal, the Unicorn of the Sea.”  While I fear she may battle her own demons born of innate insecurity one day, Mia is my adventurous eater and the one who I suspect will follow in my footsteps in learning multiple languages and traveling the far reaches of the world.  But Belle (who is more stubborn than a mule – she would rather starve and faint than eat what she doesn’t want to eat, for instance) is my ageless soul, my uncannily intuitive child who understands people and life with a precociousness well beyond her years.  She is the child who freaked us all out right after my diagnosis and surgery when she started talking of and speaking to ghosts at not even two years of age.  I wrote about that more extensively in Splendor In The Grass. She has a tendency to stare at seemingly nothing and yet she can be still in her staring for long, long minutes, bizarrely immobilized by whatever it is she’s seeing or hearing that the rest of us cannot.  And then when she had just turned 2.5, as I was pushing her off the elevator in her stroller one morning, she asked me out of nowhere, “What happens when we die, Mama?”  I didn’t know how to respond for I would have never expected that kind of question from a 2.5 year old child.

It was also around that time that Mia was being especially difficult – so difficult that I felt like she and I were already having those raging fights that I’ve heard occur between mothers and their teenage daughters – my mother and I didn’t fight like that.  One Sunday night, Mia had pushed me over the brink and I let loose on her, yelling and ordering her to her room.  Mia went running, tears streaking down her cheeks and screams echoing with the slam of the door.  Josh told me I had crossed the line, and I felt terrible.  I cried hysterically on the couch, beating myself up for being the worst mother ever.  Josh told me to retreat to our room so Isabelle wouldn’t have to see me so upset – he thought my crying would scare her.  In response, Belle turned to her father and declared in her sweet voice, “Mama is just really tired now.  She’s gonna cry for a little bit and then she will be okay.”  Literally.  That is exactly what she said.  Belle has always been very advanced in her verbal development, capable of making long complex sentences at an early age.  So I wasn’t necessarily surprised by the statements she made but I was awed by the emotional awareness that those statements suggested.

The children of course have witnessed my emotional outbursts (although they’ve tapered off over the last several weeks), the crying, the screaming, the rage.  I’m sure many child psychologists believe that Josh and I should hide our emotions and the truth from our children, that they are fragile flowers that should be protected.  Josh and I don’t subscribe to that thinking.  We do not believe in hiding from our children  They are not fragile flowers that will wilt under the strain; rather, they are highly intelligent little girls with an enormous capacity to understand and grow stronger with every hard reality that awaits them in their lives.  Facing hardship with a solid foundation of familial love from an early age will strengthen them.  I know this to be true based on the example of my own life.

When I lay in bed crying, Mia usually stays away or she’ll run in to my room to grab Pinky and blanket and run right out to watch TV– she internalizes her fears, worries and sadness.  Belle on the other hand comes in to check on me every couple minutes, opening the door ever so quietly to peak her head inside to look at me with those concerned brown eyes.  Sometimes, she crawls into bed with me and gives me a hug and kiss.  “Mommy, it’s going to be okay,” she reassures me like she knows all.

But that Monday morning, Belle was not the reassuring voice she sometimes is.  I cried into her neck as she sat on my lap in the hallway outside her classroom.  We have to kill 30 minutes every morning in between the time Mia’s class starts at 8:30 and Belle’s class starts at 9.  I sat there on the ground listening to other parents cheerily greeting each other and comparing notes about their holidays like they didn’t have a care in the world, certainly nothing like the worries and stresses that I and Josh and my girls have to live with every day.  Our holidays had been awful, almost completely poisoned by cancer.  At that moment, the sounds of normalcy were more than I could handle.  In our little corner, I tried to hide as I sobbed, holding Belle even tighter, her back resting against my chest.  There were no questions or other words this time, no “Mommy, why are you crying?” or “Mommy, it’s going to be okay.”  No.  Instead, she just sat on my lap staring at a spot on the wall with that look in her eyes that told me she was seeing something I couldn’t see in a place to which I could not go with her, the look that scares me because I know she knows that that there is worsening metastatic disease.

Her silence ended in the classroom as we tried to part for the day.  I was still crying, thinking of all the school drop-offs I would likely miss in the years to come.  I was gripped by an overwhelming sense of the absolute futility of everything, that no matter what I did, I was going to die from this disease, that it was simply a matter of time, probably lesser time rather than more, and that this little girl would be deprived of the person who loves her most.  She was now fighting for me to stay with her.  “Don’t go, Mommy!  Don’t go!” she begged.  I needed one of the assistant teachers to pry her out of my arms so I could leave, running out of the room, afraid to look back as her forlorn cries rang in my ears.

As I left the school, I begged whatever gods may be for a sign, a sign that my efforts to fight this disease would not be futile, that this misery that had come for me was not going to completely choke the life out of me, that I could still derive some untarnished happiness from life, that I would find some peace amidst all the doubts that cluttered my mind.  I suppose one is really in the depths of despair when one starts begging the gods for signs.

As I began the 20-minute walk north on Court Street towards the Trader Joe’s – I needed to do a quick grocery run before heading in for my next treatment – I heard someone call my name, “Julie!”  “Julie!”  I turned, embarrassed at my obvious distraught state, as a woman I didn’t recognize approached me.

“We’re here to help,” she declared.  “Please let us know how we can help.”

I was even more embarrassed at my inability to place this woman – facial recognition has never been one of my strengths – I ascribe it to my poor vision.  She was one of Isabelle’s classmates’ mothers.  She and others knew about my situation.  The class parents wanted to help.  I was so touched.  I told her there wasn’t anything in particular at the moment but that I was keeping track of all offers for there would be a time when I would need as much help as I could get.  I started crying and she cried with me and we stood in the middle of the broad sidewalk hugging.  A sign from the gods?

After buying the groceries and hauling them home on the B63 bus down Atlantic Avenue, I put lidocaine cream on the skin covering the mediport in my chest in preparation for the giant needle that would be inserted an hour later and hopped on the subway towards the NYU Cancer Center.  I was walking east on 34th Street, glumly lost in my own thoughts when a petite but plump black-haired woman, probably in her 50s, approached me with a piece of paper?  Great.  Now what? I thought she was going to solicit money from me.  The woman didn’t speak much English but she managed to convey to me that she needed directions and handed me the slip of paper.  It contained written directions to the NYU Cancer Center.  How ironic indeed.

“I’m going there too.  Just follow me,” I said, oddly buoyed by the knowledge that I wasn’t the only one heading to that dreaded place.

“What kind of cancer do you have?” I asked.  Have you figured out by now that I’m nosy and will ask all those personal questions of strangers that most people would never ask?  She pointed to her breasts.

“I have colon cancer,” I told her, pointing to my lower abdomen.

Based on the confused expression on her face, I wasn’t confident she entirely understood me, so I asked, “Do you speak Spanish?” just in case I could communicate with her better in my terrible Spanish.

She shook her head.

“Where are you from?” I asked, carefully enunciating every syllable.

“Bangladesh,” she said.

Now, that was really weird.  How many people do you encounter from Bangladesh, even in a diverse city like New York?  I think I’ve met only one other person from Bangladesh in New York City in all my years living here.  What’s more, Bangladesh has a particular significance to me  I lived there for 10 weeks the summer after my first year in law school, interning at a local human rights non-governmental organization.  The experiences I had during those 10 weeks were among the most enriching and profound of my life.  My time there was fraught with all the discomfort of living amidst extreme heat, monsoons, until-then-unimaginable poverty and cultural displacement and the pain of observing girl prostitutes living in squalor and women with their noses burned off by sulfuric acid thrown at them by their abusive husbands.   But my time there was also filled with the self-knowledge and pride that I could endure and even thrive amidst discomfort, finding wonder and gratitude in the unmatched beauty and richness of a lush and unspoiled countryside and the unparalleled kindness and resilience of its people.

In looking at this Bangladeshi woman who had randomly chosen me to ask for directions, all the associations I have with Bangladesh – the juxtaposition of ugliness and beauty, suffering and joy, poverty and generosity – came back to me.  My journey through cancer is not so different from my journey through Bangladesh; this cancer journey has been and is one filled with ugliness and beauty, suffering and joy, poverty and generosity.  You who have read this blog and have been with me on this journey have witnessed my moments of darkness and pain, but you’ve also seen me rejoice in the beauty, love, joy and kindness that have resulted.  How could I help but think that this Bangladeshi woman’s momentary visit into my life was not random at all, but a sign from the gods?

[To be continued]

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6 Comments (+add yours?)

  1. Kit Grady
    Feb 25, 2015 @ 17:58:12

    Yes, a sign indeed. In our cancer journey, I’m finding signs more and more. And the more I look and are aware they are out there- the more I’m able to see. At least with me. Thank you for you beautiful blog. I look forward to it.

    Reply

  2. Lisa
    Feb 26, 2015 @ 03:01:31

    Julie I enjoyed your writing as always. I just want to make one point and I hope it does not come across wrongly as I am a stranger and cannot truly know if I understand you or your girls. I would like to share how it felt for me as an adult to watch my mom die. Much of it haunts me still. To see your mom, who is your caretaker, becoming the one in need of care (emotionally), is very painful and can become all encompassing. I think that this experience has the potential to damage a child irreperably if the child feels it needs to comfort the mom. Please take this point in the spirit that it is meant. I am not saying that it isn’t OK be to authentic and show your feelings, but I do recall vividly my agony at becoming the mom for my mother. These memories never leave me despite me being an adult. Just my two cents. Please delete this comment if it hurts you in any way.

    Reply

  3. iwonderandiwander
    Feb 26, 2015 @ 17:34:37

    I am not a child psychologist, but I am trained to help kids cope with difficult and scary circumstances, and your approach with the girls gets my vote of approval! Yes, seeing you and Josh upset may sometimes frighten them or upset them, but it also ensures that they have some sense of what is going on. It can be confusing and terrifying to children when they sense there is something different and serious in their world but nobody acknowledges it. Not only that, but if their parents don’t talk about it, they often assume they shouldn’t, either. By showing genuine emotions, positive and negative, you are modeling for your kids that all feelings are okay and can be dealt with. That will make them stronger and better able to face challenges and painful experiences later in life. If you are interested, the American Cancer Society has a great coloring book for kids who love someone going through cancer treatment.
    I certainly wish you and Mia and Isabella didn’t have to face this, but you are doing a great job. You are letting each of your children cope with your emotions the way that works for her, Mia by removing herself when things get too intense, and Belle by checking on you (there’s a big difference between letting her do this on her own and expecting or asking her to, the latter can be a burden on a child, but the former is letting her be involved at her comfort level.)

    Reply

  4. steph20021
    Feb 26, 2015 @ 19:35:57

    Thanks for sharing publicly such an honest account. So many cancer survivor blogs I cant stand to read because they are all sugar coated and sickly sweet and no not everything is awesome all the time with rainbows and adventure and pretty photographs and bucket lists coming true. F you cancer.

    Reply

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