This is the thirtieth of thirty-one installments of Donna's Cancer Story, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month. Each post will cover one month of Donna's thirty-one months of treatment.
Cancerville is full of subdivisions and part of the deal when you are relocated there is you have to live in the right one, depending on what's happening with your treatment. Among them are Relapse Valley, Chemotown, Transplant Meadows, Infection Ridge, Remission Viejo and Secondary Cancer Estates. Off in the distance, on opposite sides of the tracks, are Grieving Heights and Survivors Glen. Survivors Glen has the best zip code, but as in every desired neighborhood, there is not room enough for everybody. Within Survivors Glen is a small pocket called Scarred Acres, full of children finished with their treatment, but marked in a hundred different ways by their cancer. Some will live in Scarred Acres the rest of their lives.
Our family knew the move to Grieving Heights was on the horizon, but we weren't ready to pack just yet. There was a beautiful surrealness to this month. It felt normal. Normal is something you crave when you live in Cancerville. I was doing dishes one day, one of the chores I had missed with all our supportive family around to take care of the details, when I was rinsing out an empty ice tea bottle. I unscrewed the cap and noticed words on its underside: "Even if I knew that tomorrow the world would go to pieces, I would still plant my apple tree." (Martin Luther)
It's crazy how the words on a discarded bottle cap can change your life, but these did mine. That they were spoken by the architect of the Protestant Reformation is simply ironic bonus. They stuck with me for days, Luther's words, popping in and out of the precious moments with Donna spent doing the most mundane things. An ordinary life, full of park visits, naps, errands and simple dinners was a haven to us. Every single thing in those days felt innordinately brilliant and beautiful and fleeting.
As the words marinated in my thoughts, I began to see the connection between them and our mantra throughout treatment to 'choose hope.' I wrote about it at the time:
When all of this began so long ago and I first typed the words 'choose hope,' my guess is that most folks assumed the hope was for Donna's cure. If I'm honest with myself, it probably was for a time, but as much as that mantra is for Donna, it was for me as well. To remind myself that hope comes in many forms and, more importantly, it is a frame of mind, a choice one makes. For so long, and to this day, it is the only way to live. Without hope, how would I wake up in the morning? Without hope, how do you continue to be with Donna, laughing and playing and so brightful, knowing that she will be gone much too damn soon?
As much as I hoped for a healthy Donna, there were other things I hoped, and still hope for. Hope to get through the day. Hope that there will be another day with Donna. Hope to find the joy in life. Hope to not become bitter or angry.
Hope to find a way to live with the cancer in our lives without it overtaking our lives. Hope to adopt a child, knowing that Donna would not be able to carry one herself due to treatment and to provide her with the knowledge that familes are made in all different ways. Hope that when Donna was uncomfortable or in pain, that it would be transitory and she would bounce back. Hope that [Mary Tyler Dad] and I would remain strong together.
Hope that Donna would find the world a lovely, beautiful, wondrous place -- a place she wanted to stick around in. Hope that the docs would stumble upon something that somehow hadn't cured the kids that had come and gone before Donna. Hope that our lives would find their way back to normal, even if that looked different. Hope that if Donna did die, [Mary Tyler Dad] and I would somehow survive. Hope that [Mary Tyler Son] would not be burdened by our grief. Hope that joy will always be with us. Hope that we will not be alone.
The hopes change and continue to evolve, as they should. At the base of all of them, though, is that we, this family, whatever that may look like, will somehow survive. Some of the choices we've made along the way have pointed to this. Buying the larger home two years ago; pursuing the fancy pants preschool for Donna, a place we felt could nurture her smarts and spunk; welcoming [Mary Tyler Son], or 'Little Fatty Chumpkin,' as Miss D calls him; enrolling Donna in dance class and pursuing it despite relapse after relapse after relapse.
These have all been choices, conscious and deliberate choices, made in the face of cancer. These are our apple trees. And my latest hope is that these trees will sustain us when our world does go to pieces. That these trees will feed us and shade us and shelter us from the inevitable storms that will be."
In that vein, as Donna's most desired apple tree, we sent her to preschool. More than any other thing, Donna wanted to go to school. Good Lord, if there was ever a child that walked this earth that was built for school, it was Donna. Mary Tyler Dad and I plotted and fretted and steeled ourselves for how the staff that had so hopefully accepted Donna the previous winter would react to our decision.
Turns out, with loving and open arms. We met with Donna's three teachers and the school RN and the Admission Director and devised a plan. We discussed how other children might react and concerns their parents might have. We came to the meeting holding a letter from Dr. Stew, explaining why Donna physiologically was not able to be toilet trained (Stew would have done anything for Donna, even enable her with the one place she could and did exert her control. "I am too young to sit on a toilet," she told us time and time again.)
It's hard to grasp and capture the suspended nature of those weeks Donna was in school. I felt like such a Mom. A happy mom, a loving mom, a busy mom, a SAHM. The reason why I was staying at home was immaterial. For those brief weeks of Donna thriving despite the beast growing inside her, having its way with her under our helpless watch, I got to be the mother of two. I took Cancer Mom's cape off and got to be simply 'Mom.'
In these days, our neighbors, Chabad Lubavitch Jews, encouraged us to travel to Queens, New York with Donna, where the leader of the Hasidic movement was buried. They believed that his burial place had healing powers and thousands travelled there daily and were cured from illnesses as critical as Donna's. If we were not to travel, they encouraged us to send a prayer via email and it would be placed at the Rebbe's grave.
We are not religious, Mary Tyler Dad and I, but I embrace the belief that no one truly knows what is and is not in our world, or what happens after we leave this world. Each day as Donna would nap, I would type the same message to the Rebbe and think about it as it made it's way to Queens, was printed, folded, and placed next to the Rebbe's grave: "May she live until she die." That was my wish for Donna. I did not ask for her healing or a postponement of her inevitable death, I humbly asked the Universe to allow Donna to live until she died. No suffering. No pain. No lingering. May she live until she die, was my mother's plea, my last wish for my dying daughter.
Tomorrow: The End