For five years, our family has been awaiting the 2013 miracle.
In January, 2008 just after Christmas, my husband of more than two decades and the love of my life was diagnosed with brain cancer. It was a rare version of a rare version of lymphoma, a blood cancer. Our doctor at Carbone Cancer Center told Tom and me one gray February day, “Typically patients... do not live more than several months.”
2008 would turn out to be our annus terribilis. After a punishing year of chemo that took away Tom’s feeling in his feet and left him with debilitating and constant headaches, he recuperated at home. He had lost more than 50 pounds and all of his fast-growing cells, including the linings of his organs, such as his throat and gut, were raw from treatment. Doctors weren’t sure he would live. I quit my high-paying job during the depths of the Recession and nursed Tom back to health over four years.
Doctors declared him in remission in August, 2008. There is some debate whether he will ever be declared cured. We are willing to take the label “no evidence of disease.” We were told Tom and our family could earn this miraculous status by staying free from cancer until August, 2013. Thus the year of the miracle.
I’ve written a journal on caringbridge.org since diagnosis, building a community that calls itself The Bridge. It has helped me move ahead because it was a supportive virtual space where I could share the optimism and dread that go hand-in-hand with terminal cancer care. The Bridge has been rooting for us to make it until 2013, and now as we pass through that invisible time line at 12:01 a.m. New Year’s Eve, I am preparing for the miracle of 2013 by re-reading my journal and all the generous comments from the life-sustaining Bridgers. I wanted to share some of it with you.
On Jan. 1, 2009 I wrote what The Bridge has told me was its favorite journal entry. It was written with intense anxiety in my heart and optimism burbling out of my brain. I didn’t know how else to deal with my confirmed and at that moment somewhat irrational belief that Tom would not die. Now reading this 2009 exuberance, it almost sounds silly to me. But I want to always remember how that moment felt in the hope that those of you who face challenges as 2013 approaches know that you too can find joy and peace even if it’s just for a few hours every day.
I was rankled in late 2008 that the faux and semi-hysterical happiness of cranked-up New Year’s celebrations was getting in our way of surviving the daily test of brain cancer. I had to take it day-by-day during the year, no matter how new it was. I wrote:
“I used to live my life as if there were some invisible force field that I passed through at midnight Dec. 31. I felt reborn on 12:01 a.m. Jan. 1. Our cultural symbols involve a little baby in diapers and an old man with a long white beard. I was that baby reaching for yet another banner year, the next promotion, a bigger house, a better school for the kids, the smart retirement package, the grandchildren, the winter in Florida, whatever came next in the neat sequence of my life story. Why did I never think that I might be the old man rather than the baby?”
A date on a calendar will not automatically change our lives just as the New Year will not bring automatic good news. Hope, central to our cancer survival kit, is not candy coated or found in a glass of champagne. As I wrote in 2009:
“I am struggling mightily with a very different notion of hope this year. When random illness strikes a man whose life has been focused on helping others and who to my knowledge has not told a lie for 28 years, you do wonder who is in charge of keeping our DNA running smoothly and keeping cancer at bay. Why did Tom's genetic code break rank when so many others who eat too much or drink too much or make lots of money manipulating people get to keep their DNA and RNA from breaking and causing cancer? Why doesn't cancer follow the holiday schedule? Doesn't our cellular structure know that all the illness and suffering of last year ended at midnight?”
For many of us, there is no magical line that we cross at midnight Dec. 31. Time micromanages your life minute-by-minute when cancer or chronic illness visits. The 2013 Foleys will try to hang on to this as the year of miracles approaches.
Our hope for good days ahead rests with the fact that we have made it through the past four New Year’s Eves. As I reflected on New Year’s Day 2009:
“It is a good thing to stop and mark where we were a year ago. We have lost friends and family. We have lost jobs, unfulfilled dreams and a feeling of safety about the world.
“We have gained also. I am so proud of Team Foley and, of course, of Tom for fighting through the unfathomable diagnosis and life-altering treatments.
“‘I might just make it,’ Tom has been saying the past few days.
“It will be four more New Year's Eves before we know for sure that he has made it. And what that really means given our new outlook on life is questionable. Made it where? I'm not going to ask today. We are just going to embrace the hope in his qualified declaration: ‘I might just make it.’
The 2009 Foleys faced many mundane challenges that we have overcome now. Tom had trouble getting up the stairs, eating, remembering, staying awake, sleeping through the night, overcoming nightmares, infections, rashes, etc. We also had very life-enhancing moments of gratitude. My journal chronicles one that very night in 2009:
“Tom said last night sitting on the bed and closing out the old year: ‘Thank you for being so kind to me through all this.’
“His sweet sincerity and my own gratitude for his ability to still be my life partner prompted me to exuberantly cheer him on. I had my own Times Square moment of honking and screaming and blowing a horn: "You're going to make it. In fact, you are cancer-free right now!"
“I should have said quietly, "You are welcome. You are very welcome."
“The magic line between 2009 and 2008 means little to me today. I want to grab the hope that this cultural celebration has given me in years past. I know that the only real hope is much harder earned, knit into the day- to-day life of small pleasures and feelings of gratitude.
“We go back to work tomorrow. Tonight we get back to living day-by-day, savoring every joy and enduring every hardship with a hopeful attitude.
“Our lives are richer for it. 2008 was a good year. The first day of 2009 is a good day. Happy Day-by-Day to Team Foley! We look forward to talking to you tomorrow. ”
You can read the full and somewhat rambling 2009 text at my blog or on caringbridge.org.
We plan to celebrate the New Year’s coming at a quiet dinner with friends.
In our hearts, the older, wiser and healthier Foley household will be shouting from the rooftops:
“Happy Day-by-Day in this miraculous year of 2013!”
May all of us find those miracles and may every moment of every day of 2013 be sweet and profound for all of you who read this. We hope to talk to you tomorrow.