Cancer-Sucks Awareness Month: 28 Months Post-Transplant

amy gardening

Amy Gardening in Sun Covering to Protect Her Post-BMT Skin


Two years ago I welcomed Elul with a sense of deep foreboding. After living with my own mortality, wrestling with continuing to make a life for myself in the midst of life-threatening illness, shifting relationships, months during which I could not eat and was kept alive with intravenous nutrition, at the High Holidays I could not reflect on my life or consider my mortality. I was still having nightmares that I was in a room full of people talking, laughing, and eating, only I couldn’t. I was pretty sure I would never fast again.
Last year I was looking forward to fasting. Then on Rosh HaShanah morning I woke up to a large swelling in the crease of my left arm. A sebaceous cyst had become infected and ruptured because of my compromised immune system. Liddy, my girlfriend, and I dressed for synagogue, but first went to the clinic — hopeful. Hours later I was on heavy IV antibiotics and the next morning I was in surgery. Ten days later I did not fast.
For the entire rest of the year, we celebrate and revel in the unity of our body and soul. We enjoy eating for nourishing our bodies and for the pleasure it brings. Judaism is health and pleasure positive. We pray the Asher Yatzar, so aware of how intricately and amazingly our bodies are put together and that without our bodies we couldn’t be animate in the world. We pray Elohai Neshama, so aware of that soul essence of ourselves without which our bodies would be empty.
Yom Kippur is different. On Yom Kippur at the end of the day at Ne’illah we will stand in front of the open, empty ark. We will hover over that open, empty . . . it’s meant to remind us of a casket. Whatever our life story, eventually, we will each arrive at that place. When we get there, everything physical about us will have gone, and there we will be — a soul. Who are we, when that is everything that we are? And what comfort, to be in that place, at Ne’illah, surrounded by a community of souls in that moment each striving to make the most of this life we have.
This year, I don’t want to fast. As a practical matter, my body will be around a lot of germs over the holidays. I want to keep it as strong as possible. As a spiritual matter, this year I am not interested in considering a separation between my soul and my body. This year I want to stay focused on keeping them together. For now, my soul has only known the cancer-free blood that pumps through my heart for 28 months. I don’t want to spend a whole day thinking about one without the other.
Even if it is Cancer-Sucks Awareness Month.
sam hospital

Amy’s young friend Sam


September is National Blood Cancer Awareness Month, and also Childhood Cancer Awareness Month, and Ovarian Cancer Awareness Month. I was diagnosed with Acute Myelogenous Leukemia in December 2010 and had my Bone Marrow Transplant (BMT) May 12, 2011. My 7-year-old friend Sam had an AML relapse and started a new round of treatment April 1.
He had his transplant August 27th.
My partner Liddy (of the love story) was diagnosed with ovarian cancer on July 6, 1998. 15 years later, she continues to be cancer-free.
Next month I will not be writing about breast cancer, even though I think Breast Cancer Action is awesome and I love their Think Before You Pink campaign. I won’t be writing about pancreatic cancer in November, or colon cancer in March. You can look here to find a monthly cancer awareness calendar.
Awareness is important, but I don’t think being aware of cancer is really the issue.
When cancer is the #1 cause of disease-related death for children and adolescents in our country with 28,060 new cases in Minnesota in 2012, when many of the drugs used to treat cancer were developed 30 or more years ago – especially those used to treat cancer in children, when some of the treatments can themselves cause other forms of cancer over time, when treatment for ovarian cancer and breast cancer can cause leukemia and when to treat the AML and prepare me for the BMT I had to have several rounds of whole-body radiation which long-term might cause breast cancer, when in 2012 cancer accounted for 25% of the adult deaths in the United States, when it’s hard to find a person in the U.S. who hasn’t experienced cancer either in their body or in their life, how could we not all be aware that cancer is rotten, horrible, ugly and far too common? How could we not all know that cancer sucks?
I don’t think we need to spend our High Holidays reflecting on the suckiness of cancer. At the most basic level on Rosh HaShanah we celebrate the birthday of the world and our relationships with it and each other. And what about that focus on the soul on Yom Kippur? Well, Leviticus 17:11 reads, “For the soul of the flesh is in its blood.” On that verse, Rabbeinu Bachya taught that the Torah referred to the last revi’it of blood in the body – approximately three ounces. In Sota 5a, s.v. Adam, Rashi writes that this blood that houses the soul is the minimal amount of blood with which a person can live, Tosafot that this is the amount held in the heart, and Rambam on Mishnayot Ohalot 2:2 that this is the amount of blood with which a person is born. Maybe this year for us the invitation of blood cancer awareness month is to think about the relationship between our blood and our soul, between our self and each other, between us and the world.
Amy With Many of the People on her Team at the Be the Match Walk+Run

Amy With Many of the People on her Team at the Be the Match Walk+Run


As for how we could turn those reflections into action, we could schedule ourselves screenings for colon cancer or cervical cancer, or other cancers that could detect cancer earlier increasing our chances to keep living. We could donate blood. Many of us need blood transfusions during our cancer treatment; Mount Zion and Beth Jacob host drives in November and January. Bone marrow and stem cell transplants can cure people of blood cancers and other diseases. We could learn more and join the international registry or update our info. If you are pregnant you could donate the cord blood. On Monday September 30th, from 10am-2pm you could volunteer or get questions answered and register in person at The Great Hall 180 E. 5th Street, Saint Paul, MN 55101. Request more information in the comments.
In Israel? Contact Ezer MiZion. The IDF is a huge supporter of the registry. We could donate money to blood cancer research or specifically for research on childhood cancer. We could donate money to a great organization in the Twin Cities that supports people living with or recovering from cancer. We could be creative and raise money through awareness or by participating in one of many walks, runs, or bike rides.
Over these holidays we read:
“Is not this the fast I want?” asks God. “To free people from all which cruelly oppresses them,To let the oppressed go free,
To break every chain,
To share your food with the hungry,
To take the homeless into your home.
Clothe the naked when you see them.
Do not ignore a needy relative. Then light will break forth like the dawn, and your wounds will soon be healed.” Isaiah 58:6-7
Fasting or not, I am so hungry for our wounds to be healed. I am so hungry for the day when cancer isn’t treated because it is only a memory. I am so hungry for the day I am not aware of cancer.