Journaling Through the Cancer Journey

Photograph by Zion Ozeri, NYC, 2017

In October of 2016 I was diagnosed with an extremely rare cancer called leiomyosarcoma. There are fewer than 300 cases per year in the US. The prognosis is questionable at best. During the past 9 months I have kept a journal that I shared with many friends, most part of my Jewish world: National Young Leadership Cabinet, Wexner classmates, my weekly minyan, UJA, the kids’ Day schools, Israelis I have known for decades and my small family.  I have made them laugh and cry, which in turn has been very helpful for me and for my husband, Zion. 

When Lori Baron, a close friend and Wexner staff member, suggested I share one of my journals with the wider Wexner community, I was hesitant. But then I thought, maybe this will be useful for those who have a friend or family member struggling with illness. Being a friend in good times is easy; it’s harder in bad times. I have learned many lessons.

Journal Entry Feb 12, 2017

My first chemo session, a 4-hour marathon of two drugs, began on Friday. With my daughter Chloe and my husband Zion by my side, we have begun my unexpected journey.

There is a midrash in this week’s Torah portion, Beshalach. We read about the final plagues being delivered as Divine intervention, about the parting of the Red Sea, the Manna from heaven and even water from a rock.

After witnessing all of these miracles the Israelites seem unimpressed and constantly complain. They are worried there will not be enough food; they are worried there will not be enough water; they are worried that they are not “there” yet.

I too, am very worried.  Obviously, the biggest worry: I won’t survive. But the more imminent worries: I will lose my appetite.  Today I have a bitter taste in my mouth that I am trying to disregard. I am worried that I will be overcome with exhaustion by Tuesday. I am worried about that ever present deep black hole, although now that we are finally confronting the devil within, I am pushing that onto the back burner. I am listening to another survivor reminding me that worrying won’t change the outcome. I am resilient and I am taking my daughter Gabby’s solid advice on Thursday, when, as we face-timed, I watched my first grandson, Ethan, (born less than a month after I was diagnosed) as I was having a meltdown, she said, “YOU HAVE TO FIGHT. “

RED DEATH: Like the Red Sea, which could have meant the demise of my people, we meet one of my favorite biblical characters, Nachshon.  He is the first to stand on the shore and touch the waters edge. He enters the Red Sea before it is even parted, while the remaining Israelites watch. Nachshon’s entrance into the water is symbolic of many things, mainly his trust in G-d. He is a leader who does not hesitate and takes a leap of faith trusting that G-d will provide for him. 

                                 I want to be Nachson in this battle.

The first drug they administered into my vein is called Doxorubicin, but it has the nickname by patients, Red Death. It’s very red. It’s very potent. I am looking at it, as the death of LMS.  It’s a long process to administer.  The lovely, young nurse injected 60 cc’s — 1 cc at a time — flushing between each cc, while schvitzing in a plastic suit, as even a drop of this on your skin is dangerous. I didn’t look down. Chloe and I worked on a crossword puzzle. I watched an episode of Fauda, then crashed when they injected me with Benadryl to prevent an allergic reaction to the 2nd drug. It’s an experimental treatment. I’m working on the theory that timing might be everything; I am one of the early patients to use this drug since its very positive outcomes in the trials. 

We are in a curtained cubicle, so on either side were other patients.  I heard the woman on my right with a heavy accent tell the nurse she was from Poland, but then she spoke to her husband in Hebrew.  On the left, the woman spoke Arabic.  Walls of fabric and disease might be a good way to find peace.  We wished our neighbor on the right Shabbat shalom, learned a bit about their lives and, of course, some anti Bibi political discourse got thrown in with the chemo! Ever the multi-taskers!

They gave me cortisone, so yesterday and today I will have lots of pep! We went for brunch and saw a great documentary about cats in Istanbul, in this adorable deco theatre on Ludlow Street. I came home, with Via (no more public transportation and lots of hand washing). Then we went for dinner and to a club to listen to love songs. I did more yesterday than I have for months and was totally distracted.

The head nurse lays it on the line. She said, on Tuesday, you may wake up with only strength enough to walk to the couch. Don’t fight it. Just take it easy. It will pass and by Thursday I hope to be on the upside of that reaction. 

Friday, more chemo, but this time only the new drug. And it doesn’t have side effects. Therefore, knowing that we have a gap until round 2 begins again, on March 3rd, we will fly down to visit our grandson Ethan (and his parents). That’s the best infusion I can get!

As for the Jews complaining, well, that might be part of our DNA. I am trying not to kvetch too much, but, I’m no martyr. Zion is trying to cope with his fears and my mood swings. 

Today, July 13, 2017

My staples were removed from my 2nd surgery and I am free of any visible LMS. I will continue receiving the IV new drug, as the oncologist is hoping this will prevent anything microscopic from spreading to my lungs or liver. My next CT Scan is on October 31st. I am learning how to put one foot in front of the other, live in the moment, be organized, meditate, and accept help from others. As I will be getting CT scans over the next five years to hope and pray that my LMS does not recur; my journey is ongoing. I am learning to accept that prayer may not work, but can’t hurt. And the volume of mi shaberachs I received was priceless. Keep them coming.  

Devorah bat Miriam.

Ellen de Jonge-Ozeri is a Wexner Heritage Alum (NY/Seagram) and is on the board of The Jewish Lens, an innovative approach for teaching Jewish values through photography that happens to be founded by her husband, the world-renowned photographer, Zion Ozeri (see his photo above). Ellen is also an active member of AIPAC and a past Young Leadership Cabinet member and a past chair of the Manhattan Womens Campaign of UJA/Federation of New York. Currently she serves on the Caring Commission at UJA Federation. Ellen can be reached at ellendej.ozeri@gmail.com.