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Friendships That Are Gifts

19 Oct

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Every now and then you are lucky enough to come across someone who will be your true friend. Someone who will understand the same jokes. Someone who you can laugh with until your stomach hurts and tears roll down your cheeks. Someone who will get you. Nearly 13 years ago, I was lucky enough to come across my beautiful friend, Beth.

Not long after that, when she was only 37, she called me to her home on a warm spring night. We sat on the porch and sipped iced tea and she told me she was diagnosed with breast cancer. It was the first step in a heartbreaking chapter of our friendship.

Beth, loved by innumerable people besides me, was strongly supported by our local community and her larger network of family and friends. I had never known a friend with cancer and I had no idea what to do for her first. I began by pouring my heart into cooking. Every Wednesday night, for as long as she was undergoing treatment (which, incidentally, was many months) I made dinner for Beth and her family. Throughout this time, I noticed her lose her hair, her eyebrows, her eyelashes. I listened to her talk of sores in her mouth as she sucked ice pops, and lament that she was forgetting things from all the chemotherapy. I saw her family rally around her. And I saw her rally around her family. And most important, I watched her fight each day, talk relentlessly about the future, and continue to live her life positively. She was simply incredible.

On her final week of treatment, and the last time I delivered dinner to her family, I brought her a bottle of wine. I worried that such an open display of revelry might superstitiously invite bad luck, but 5 years after Beth’s diagnosis, I was fortunate enough to bring her pink champagne to celebrate the important milestone she finally reached.

What once consumed Beth and her family (and a large part of my mind as well), has become merely a part of her past. She does not dwell on what happened to her. She looks forward. She is happy. She is loved. She continues to live her life positively. She is still simply incredible.

Several months ago, Beth asked me to join her on the Avon 2 day, 39 mile walk across New York City. Without even thinking about it, I said yes. First, I have a problem saying no, and second, I would do anything for Beth. And then I panicked. 39 miles is a major undertaking that required 12 weeks of training, 2 pairs of sneakers, 3 new apps, a minimum fundraising goal of $1800, a weekend away from my family, and countless blisters. What I received in return, however, cannot be itemized. Walking through the streets of the city in which I have grown up, in which my parents have grown up, in which my grandparents have grown up, was nothing short of momentous. I walked past the area where my great grandfather owned an antiques store on the Lower East Side, the theater where I saw my first James Taylor concert, the apartment building I lived in during law school, the library in which my husband and I met, the street where my mother and I picked out yarmulkes for my wedding, the hospital where I delivered my first baby, the spot we used to stroll him to for Sunday brunch, the courthouses in which I spent so much time litigating. I walked through my family history for the past four generations. I walked through my life.

And then I realized, maybe that’s the point. Maybe when you walk through your whole life, your whole life comes back to you. Washed amid a sea of pink, our team held hands and crossed the finish line. I took so many pictures throughout the two days but my favorite one, by far, was the one captured by my husband, solely because of the pure glee you can see in my friend Beth’s smile.

Beth’s whole life has returned to her. She is complete. At the end of the walk, I kissed her and said “your friendship is a gift.” Because it is. I should know. I have been treasuring it now for almost 13 years.

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More pictures from the walk:

lincolncenter brooklyn bridge lowermanhattan dumbo water randalls man chinatown baseball china radio horse flatiron  flatiron2esbfamteam3theend

Reservoirs of Hope

6 Oct

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I posted optimism in haste. I understand, I am optimistic by nature. I am also superstitious, however, and that should have given me pause. Regardless, I was hasty and we have seen immeasurable sadness.

My son returned to a fetal position on the floor, unable to contort himself enough to not feel pain. He winced, he punched pillows, he cried. I did too. “It’s not fair!” He screamed. I told him he was right. It was not fair. Life often is not. He is only 12. I wish I could know the pain he is feeling. I wish I could experience it so I could commiserate with him. I fear the pain I feel as a mother might be worse. I hope it is because I am abler to weather it than he.

He rearranges himself constantly, twisting around within and atop the quilt, like a giant stress ball but regrettably ineffective. Another very sad week to enter into the calendar.

“Tomorrow will be a better day” I tell him, just like my mother used to tell me when my day ran afoul. Each night I go to sleep an empty pot left beneath a leaky ceiling, allowing hope to collect in time for morning. Each morning I wake with expectation, yet it is always the same, if not worse. The pain still there, the agony unbearable for a young boy, and too much for this mother to witness. At what point do my empty promises reveal me to be an optimistic liar to my child. I cannot keep telling him that “tomorrow will be a better day” when it just does not come to fruition. Perhaps he should be more like his father: an over-prepared realist. Ready for and expecting the worst and anything less will be tolerable and even welcome. Then again, I’m not sure I could live like that either.

“Just sit here and look out the window” my mother used to tell me when I had a nightmare. It was also what her mother used to tell her to remedy the same situation. Inevitably, I would stare out the window and become distracted enough with whatever I may have noticed to have lost track of my nightmare. I wish I could stare out the window long enough right now.

“Just sit here and look out the window” my mother tells my son. But he cannot sit upright long enough without pain to complete this task. He again curls himself into a ball and weeps.

I wonder if this little boy knows how much he is loved. How much the lives of those who love him are thrown off by this spell. That his mother goes to sleep waiting to refill a reservoir of hope by dawn. That his brothers might be a little bit nicer to him. That his grandmother does not sound like herself when she answers the phone. That his grandfather makes frequent unannounced visits just to see how he is doing, just to look at his face, just to kiss the top of his head and rub his back. He is so loved.

Yesterday was the type of day you just do not expect when you wake up, even with a full supply of hope. When you confront a disease, especially one that afflicts your child, and you must contemplate therapies, sometimes none of the choices are good. All medications are accompanied by unfathomable risks and you find yourself asking doctors “is it at least a treatable Lymphoma?” as if that is an acceptable outcome. Simultaneously, compromising your child’s current health is not an option. Pile on the relentless pain and decisions are suddenly made amidst a pressure cooker of love and concern and the need for a young child to simply find some rest.

I refused to allow the nurse to provide a detailed consent, particularly in front of my son. I do not want to know the risks they are required to tell me by law. I do not want to know about minuscule possibilities of terrible things that may await us. I do not want to know about something that might have happened to a lab rat that received 1,000,000 times the allowable dose. I want to see my son well. I want to see his smile again. I want to see him be a 12 year old boy.

Several hours later, following his first IV infusion therapy, I did just that. Now he is at school. He is sleepy, he is concerned, but he is smiling. Today is a better day.

My pot is full.

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Sailing

21 Sep

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We are drifting aimlessly on the sea. The water is so placid even our boat does not create a ripple. We stretch back and let the salty air wash over our sun-kissed faces. We are good.

And in an instant, the sky turns dark and stormy and our boat is upended. We are swallowing the sea water that protected us just seconds earlier. We are desperate to right our boat, to climb back into its safety, to escape this disastrous storm. But it takes time.

This is what it is like to live with a chronic illness. One minute you are navigating innocent waters and the next minute you are laying with your son on the cold tile of the bathroom floor, struggling to find stillness.

Last week, out of nowhere, our boat was toppled. My son experienced what can only be described as “labor pains” for nearly a week. He winced, he cried, he dug his nails into the flesh of his wrists to feel something other than agony. And with each tear that traveled down his cheek, the vise around my heart tightened its grip. I tried to act casual, I cried and told him I wish it was happening to me instead, I tried everything. There is literally nothing I could do to soothe my son, to make it better, to be his mommy.

“Can’t you just hug me and make it go away?” He cried.

Oh, how I wish.

On Friday morning, after a long and very sad week, my son woke up feeling no pain. He later called me from the nurse’s office at school:

“I have good news and I have bad news. The good news is that my stomach feels fine. The bad news is that my wrist bent back in recess and then I fell on it and it hurts a lot.”

“So you have good news. I love you.”

Later that day, my son managed to take his iPhone for a night swim. He called me from his friend’s house in such distress that it was difficult to hear actual words.

“I’m an idiot. I did the dumbest thing. You’re going to kill me. I’m sorry. I’m sorry. I’m so sorry.”

“Are you ok? How do you feel?”

“I feel fine.”

“So you’re ok.”

I told him I don’t care. I told him it’s just money. I told him I’m just happy he feels good. I told him to hang up with me and go be a kid.

When I picked him up that night, he again cried, saying he made a mistake.

“I’m glad you did. That’s how you learn. You will never go swimming with your phone again. I make mistakes, Dad makes mistakes, we all make mistakes. It is part of life and no one gets out of here without making some along the way. And by the way, you mean way more to me than a phone.”

The following day was spent going to Urgent Care and getting X-rays for his wrist. As we drove to the clinic, my son reflected on the broken phone and the possibly broken wrist.

“Yesterday was the worst day, Mom.”

“Yesterday was the best day.”

“No, I mean because of my phone and my wrist. So it was a really bad day.”

“Yes, but you woke up feeling fine and your stomach no longer bothers you. Your phone can be replaced. Your wrist, even if broken, will heal.  These are things that happen to everyone. But you feel good. So it was a great day.”

When the dark clouds gather and the storm rolls in, I worry that my son’s whole life will be like those moments on the bathroom floor: a tiny ship tossed around helplessly in a maelstrom. I remind myself of the things I must believe in: medicine, Hope, and my son. I remind myself that this disease should be the worst thing that ever happens to him. I remind myself of the serene seas in which we have been fortunate enough to sail. And then I look out for those starry nights, the traditional harbingers of the promise of beautiful weather ahead.

The phone was irretrievably broken.

The wrist was not.

And neither was my heart.

And our ship is again floating under a beautiful, cloudless sky, hoping for endless starry nights.

Unwritten

12 Mar

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A wise friend recently implored me to get tested for the BRCA gene. Up until then, I was fearfully disinterested. My mother and maternal grandmother and aunts were all diagnosed with breast cancer at one point or another, and some, like my mother and grandmother, received multiple diagnoses. I have grown up watching women I love fight brave battles and then go on to live their lives as extraordinary survivors, putting scars and tears behind them. Nevertheless, my friend was persuasive and, because I love and respect her, I promised her I would get tested. And so I did.

My blood was drawn in December. I did not even think about it until I was told the results were in. They tried to schedule an appointment for me immediately prior to a February family vacation. I refused. Although I assumed I would test negative for the gene, what if I didn’t? What if it was positive and I had this heavy secret to carry around the beaches of Punta Cana? I postponed my appointment for one month.

Upon my return from vacation, I had my routine mammogram. I constantly see doctors throughout the year as a means of surveillance. I have an annual pelvic ultrasound and breast MRI. I see a breast specialist and my OB/GYN twice a year. I do everything I possibly can short of prophylactic surgery. And, like my mother and grandmother, I’m just living my life without focusing on what for them, has been, or what for me, could be. My mammogram was normal, making me two years older than my young mother when she was first diagnosed with breast cancer. A milestone.

I did not realize that my appointment for my BRCA results was today until I looked at my calendar on Monday. Thinking I had little chance of having this gene, I asked no one to accompany me to the appointment and intentionally did not even tell my mother I was being tested. After being kept waiting for an hour, allowing maximal anxiety to fester, the doctor finally told me that I do not carry the BRCA gene.

And then I lost my shit. I wept. I stopped breathing. I reacted enough for the doctor to suggest I have a drink. It was 11 am. It was actually a good idea. Why didn’t I bring a drinking buddy and confidante to this appointment? I am an idiot. And then, because this appointment involved genetic counseling, we discussed my options. There are other genes associated with breast cancer although their detection is not as reliable and there are wide margins showing your chances of getting several types of cancer throughout the course of your life. These genes are not as thoroughly studied as the BRCA genes. Importantly, it is likely that this testing would reveal that I do carry such genes, as my mother too tested negative for the BRCA gene.

It is one thing to know, with a definitive statistical probability, your chances of a breast cancer diagnosis and taking intelligent, aggressive, surgical safety measures. It is another thing altogether to lay awake at night after you tucked your children into bed and ponder the weight of potential cancers that decided to show up in your genome. So screw that. My life is not fully written and I am it’s sole author. I’m going to politely decline the benefits of this scientific advancement, thank you, in favor of sleep, peace of mind, and taking life as it comes: unplanned, not always pretty in the details, but wholly beautiful nonetheless.

After phoning my mother to tell her the news, and fogging up the windows of my parked car with my own suffocating relief and tears, I decided to just love the day. My son asked me to pick him up from school. I did. I took him for frozen yogurt AND a cupcake on this first sunny day in one of the longest winters I can remember.  He told me all about his day in great detail. I hope he never stops. It is a luxury to have a mind free enough of worry and knowledge to listen to him and his stories. Because his life is not fully written either.