Row to Shore: One Couple's Lymphoma Story
Who were those people named Tom and Ellen who lived in our house in 2007 and somewhat smugly planned vacations and retirement options without a second thought to the cosmic curveballs that rocket cancer into your life? How did we get from our self-congratulatory lives to the deliberate practice of prospecting for joy and hope?
Tom Hill Foley was diagnosed at University of Wisconsin Hospital Feb. 5, 2008 with large B-cell non-Hodgkin's lymphoma with CNS involvement. For those of you new to cancer, this means Tom had very advanced cancer of his white blood cells and it had been detected first in his brain.
"Typically patients don't live for more than several months," our young doctor said to us on that horrible day of diagnosis. Tom and I both thought the doctor was telling us that Tom was a goner. The meeting ended with Brad Kahl, MD, now beloved in our family, telling us somewhat clinically that he would treat Tom. In fact, Tom was admitted to the hospital that afternoon and started chemo the following day.
He would have some of the strongest chemotherapy ever administered at the University of Wisconsin Carbone Cancer Center. We would travel to New York's famed Sloan Kettering clinic to get an innovative treatment plan to share with our wonderful doctors in Wisconsin. Tom would survive an extremely difficult bone marrow stem cell transplant in the late summer.
He is now in remission and if he stays there for five years, he may be declared cancer-free. (You can read about our yearlong struggle in detail at www.caringbridge.org/visit/tomfoley.)
You can make it
We have no secret tips to share with you. We can only tell you that we got by with a lot of help from our friends and we took great strength from a tremendous amount of soul-searching and honesty between husband and wife.
I am not a fan of people or books that somewhat cheerfully refer to the cancer experience as a journey. We have not reached some gauzy destination where hope is plucked like ripe strawberries and peace rules the land.
Maybe that's coming. But for now we live in a foxhole. We dove in together a year ago and we knew instinctively that neither of us would come out alive without the other. We are in a fight for our lives, both psychologically and physically. We do not feel like we are on a journey.
This may be one of our biggest problems as a couple. Maybe the mental health experts who read this will nod sagely and remark that we will be better once we get on the "journey'' bandwagon. But I suspect couples and families who have somersaulted into the foxhole during the fire fight of cancer treatment may find some solace in our story.
If we can make it, so can you.
For almost an entire year, we spent all of our free time learning about Tom's disease, the UW Hospital's quirks, the clinic's system, how to get the best use of the triage life line, how to survive the many trips to the Emergency Room, the grindingly tough jobs our nurses and doctors have, and what it really means to be an "advocate'' for a patient. (Think really angry grizzly bear.) At home, we witnessed how an entire community can help one person get into remission and stay there.
We also learned a lot about ourselves.
We thought we already had world-class self-awareness. Tom is a veteran mental health therapist who spent about half his career dealing with very troubled young men, and I spent 10 of my 32 working years as one of the first female execs in the media industry. We were survivors: smart, tough and relentless.
And then cancer put us to the test.
"This is going to be a rollercoaster ride," the taciturn Dr. John Ewalt, Tom's internist, said after the brain tumors and one lone lumpy lymph node were found in late January, 2008. I was talking to him from a closet at Meriter Hospital, the only private place I could find quickly when the initial diagnosis came in on my cell phone.
I should have seen that closet as the first of many tight spots we would encounter. In the past year, I have watched Tom almost die twice, left behind my career and my VIP status as an executive, taken an intriguing but more manageable job that allowed me to be home for dinner and spent endless hours in cramped hospital rooms and crowded clinics and waiting rooms.
I have watched Tom's hair fall out and grow back twice in 10 months. I have seen his body bloat from chemo-induced fluid retention and shrink from an inability to eat for days at a time. We have endured "the waiting,'' cancer patients' lingo for those hours or days of high anxiety for the results of MRIs, CT scans, blood tests, cell harvesting, biopsies and other tests that might tell you whether you may die soon.
This has been the most horrible year of our lives and yet on New Year's Eve, my husband sat on our bed and said, "Thank you for being so kind to me this year."
We have had a year of gratitude and a year of loss. Because we have a strong marriage, two wonderfully supportive 20-something daughters, hundreds of giving relatives, friends and neighbors, we can articulate how grateful we are.
It's the loss that trips us up. It's the hope that gets us over the rough spots.
When we stray into self-pity or anger --- two extremely real and present emotions in our lives --- we turn to the shared mantra that guides us: The Serenity Prayer. "God grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference.''
Tom is much better at this than I am. When he was loopy from the drugs or so weak he could not get out of bed, my overwhelming sadness about my lost life of book clubs, power lunches and calls from potentates took over. Tom was able to show me during those times how out of whack my serenity quotient really was.
"Do you want me to stick around?" he would ask in a gravely voice in his darkest hours.
Of course, I did.
"I'll do this for you and the girls," he'd say with resolve.
The next day he would be out of bed with his jaw clenched in concentration, pushing his IV pole a half block down the hall. (Or was the IV pole pulling him? We couldn't tell.) The following day it was a full block. Soon we had long walks through the mysterious maze of the hospital to the magical Children's Hospital lobby.
I could not imagine my life without him. I told him this. It was a crossroads in our annus horribilis.
Tom and I spent a few hours talking about this essay that you are reading. I was surprised that two things stood out for him about the ying and yang of our year of dread. The first was how centering it was for him to hear that I could not live without him. This gave him the strength to continue with treatment that left him wasted and in pain.
The second was the hope he mustered from my unrelenting belief that he was going to beat the cancer.
"We both sat there (a year ago) with a potential death sentence," Tom said a few days ago when I interviewed him for this essay. "I could feel it in my head. It felt like death."
The overwhelming impact of the diagnosis and the deep questions about the scary treatments were too much for Tom to grasp.
"You told me: 'We can beat this,' '' my husband said to me recently at our favorite breakfast joint. "That made it smaller. It gave me hope."
I would like to tell you that every time I told him that I thought he could beat the cancer that I really meant it. There were several times when I wasn't sure I wanted him to continue with care because doctors said the treatments might land him in a nursing home. But I never stopped cheering. I never let him see my doubts. And I never will until the moment comes when we know it's time to say goodbye.
I learned this practice from the most important book I read during the initial weeks of treatment, "The Anatomy of Hope" by Jerome Groopman, M.D. This oncologist/author outlines scientific research and his own observations that patients who have hope or who are surrounded by hopeful people have better outcomes. Even if they die earlier than expected, they pass on with a higher quality of life.
I had this down pat by the time Tom was nearing the end of his first round of chemo in Spring, 2008. He had been in and out of the hospital from February until the end of April. He looked like a concentration camp survivor. I was psychologically growing wane.
We realized that as a couple we could not go any further alone. This was very hard for us. We have a strong marriage and we are tragedy-tested, but we had not yet opened our hearts or our family to larger systems that could help us. When we finally could do this, we both became a lot stronger and our lives together changed dramatically.
We began to see a cancer psychologist Mark Heiland at the cancer clinic. He gave us great advice that we use to this day. "Ellen, your job is to be strong," Mark said. "Tom, your job is to get well."
This sounds simple but when you are healthy and long-married, you trade off being strong. Or you find special areas in which one of you can be strong when the other is weak. For example, I am very strong when it comes to working in large institutions. Tom is very strong dealing with individuals who are struggling. I was great at making the UW Hospital work for Tom. He was terrific at connecting with his nurses and the floor chaplain.
As Tom's treatment became more complicated, including side effects and challenging calls about the next step in treatment, we had to change our roles.
Over those next few weeks, it became clear that I could not be as strong as I needed to be for Tom and handle my current workload. I cried for two weeks after I made the decision to resign my job as an executive. I quit on pure faith that it was the right thing to do for our family. All of my instincts told me I was making a horrible mistake.
We still mourn the loss of my job as editor of the Wisconsin State Journal, a post my husband and daughters sacrificed to help me earn. In recent weeks, I've come to understand it was the right decision for that moment. I am trudging somewhat reluctantly to serenity.
Tom did his job by undergoing bone marrow stem cell transplant. While it's still early in recovery from that procedure, it may have saved his life. It came at a great cost. I have never seen someone get well after getting that sick. As I write this four months after he came home from the hospital, he is still recovering. He still cannot work. He still takes a lot of pain medication. He does look very cute sporting duckling fuzz atop his formerly bald chemohead.
Home for dinner
My new job, as director of development at the 41,000-student Madison Area Technical School, allows me to be home for dinner. Our post-dinner chats frame the most joyful part of our day. We sit in the living room of our 1930s house each night and talk until we start to fall asleep about 8 p.m. We laugh; we ponder what the heck our children are up to; we plan how we will help Forward Lymphoma, the new group raising funds for lymphoma research at UW Carbone Cancer Center (http://www.forwardlymphoma.org/); we tell old stories about our childhoods and our parents; we read the New York Times aloud to each other and rail against the knuckleheads who run our economy and failed to see the signs of disaster.
This is how I am strong for Tom. I put him first, and I'd love to tell you this is easy. I still struggle.
Tom keeps doing his job, which means he is focused on getting well. He's had some self-induced dips on our rollercoaster ride. He went out to shovel a few weeks ago, fell, broke his arm and we were back in the hospital.
"I'm sorry," he cried out while delirious from the pain in the Emergency Room.
"Honey, it was an accident," I said. "It's like cancer. You didn't do anything to deserve this. You're going to get well. We're going to make it.''
Row your boat
At times like these, a Russian proverb runs on a loop in my head: "Pray to God and row to shore."
It means that you need to pray that the random evil that brings on painful and life-altering illness will pass you by. But you also need to do whatever you can to get yourself to shore.
We are still learning how to do this without driving each other crazy.
Tom is still gently guiding me to embrace the Serenity Prayer, particularly the part about accepting that there are some things I can't change no matter how hard I work or how long I go without sleep.
I am helping him understand that no matter what life throws at him, I will be there confidently cheering him on, rowing our little boat toward shore.
The waters are still a bit choppy, but we have hope we will make it.