A Question of Time: Etna Man, 49, Battles Terminal Cancer, Tries to Plan for Future
Tom Batchelder takes a walk with his daughters Samantha, 6, center, and Kailyn, 3, at his home in Etna on September 22, 2013. Batchelder was diagnosed with terminal cancer a few years ago, and is trying to plan for his daughters' future without him. "You learn early in life that sometimes things just don't go the way you planned," said Batchelder. (Valley News - Elijah Nouvelage)
Tom Batchelder sits outside his home in Etna on September 22, 2013. "After a couple stints in the military- North Carolina and then ten years in Ohio, I never felt like anywhere else was home except here," said Batchelder. (Valley News - Elijah Nouvelage)
Tom Batchelder watches as his girlfriend Tracie Carsey holds their daughter Kailyn, 3, outside their home in Etna on September 22, 2013. Batchelder was diagnosed with terminal cancer a few years ago and is trying to plan for his family's future without him. (Valley News - Elijah Nouvelage)
Tom Batchelder comforts his daughter Samantha, 6, right, as she cries outside their home in Etna on September 22, 2013. A friend of hers had to cancel their playdate after getting sick. "She was really looking forward to it," said Batchelder. (Valley News - Elijah Nouvelage)
Etna — On the days when Tom Batchelder is feeling up to it, he climbs into a car with his girlfriend and their two young daughters to take a drive.
The trip is rarely planned in advance and the destination is often vague. This past summer, they visited Lake George in New York, an adventure that began by driving west on Route 4 to see where it took them.
“It’s based on when he gets up and he’s like, ‘Hey, I feel pretty good. Let’s go for a drive,’ ” said his girlfriend, Tracie Carsey, 43, who shares a home with Batchelder in Etna. “And then we just drive to where we end up and spend the day. It’s really hard to plan anything.”
Batchelder’s fragile health is the reason.
The Hartford native has been living with colon cancer for nearly four years and, in July 2012, doctors told him that his cancer had spread to his bones. Batchelder is considered terminal, which means that he will most likely die from his disease. Today is his 49th birthday.
A former respiratory therapist who Carsey characterized a “workhorse,” Batchelder now spends most days at the house that he and Carsey rent in Etna. He helps with their children, 6-year-old Samantha and 3-year-old Kailyn, when he is able. But often, the chemotherapy treatments and medication render him too weak to help much. That leaves Carsey to manage the household whenever she is not working nights as a nurse at an extended care facility.
There is no certainty around how much time an individual patient with a terminal diagnosis has left to live. Still, it’s the first question most people ask, said Marc Pipas, an oncologist at Dartmouth-Hitchcock’s Norris Cotton Cancer Center.
Without treatment, someone with metastatic colon cancer might live five to six months, said Pipas, who is also Batchelder’s doctor. With treatment, a person might live two years. Given those odds, Batchelder probably has less than a year to live.
The terminal diagnosis has infused every decision that Batchelder and Carsey make with a sense of immediacy. There is no looking forward to family vacations next summer, no planning for retirement together, no looking ahead to the girls’ high school graduation. Instead, the two discuss moving Carsey and the children into a smaller, more affordable place, and how to set them up for financial security after Batchelder is gone. It also has given Batchelder urgency to realize a longtime professional goal.
People who are facing the end of their lives consider many other questions, from the mundane to the spiritually profound. Indeed, no two people face the end of their lives the same, said Sharona Sachs, who directs clinical services for Dartmouth-Hitchcock’s palliative care program. But a terminal diagnosis can crystallize their thinking in similar ways, helping patients and their families focus on what is most important for a person to live a meaningful life.
Ideally, everyone should consider what gives their lives meaning, even while in the best of health, Sachs said. No one should wait for a terminal diagnosis to “reorganize your priority closet,” Sachs said, and ask themselves what they would like to accomplish if time were short.
Such questions are important not only for how people live their lives outside the health care system, but also to inform the decisions they make throughout a lifetime of seeking care, she said. They must weigh the burdens of treatment versus the benefits, what are the alternatives and discuss with their doctors which option is best for them.
“A terminal diagnosis or life-limiting illness is the crucible that clarifies all of those issues because they’re so extremely represented under those circumstances,” Sachs said. “But I think that to live a full life and navigate a medical system in full control of your outcomes, the same principles exactly apply.”
On a rainy afternoon in July, Batchelder sat on his porch and stared at the trampoline in his yard as he talked about his priorities.
“Survive as long as you can,” Batchelder said, his voice a creaky mumble. “I’d like to live as long as I can and spend as much time with my kids as I can.”
Batchelder has six children — four from a previous marriage who live with their mother in Ohio, and the two youngest who live with Carsey and him in Etna. All of them know about his terminal cancer diagnosis, even if they do not fully appreciate what it means.
Inside the house are signs that Samantha has drawn for him. One says, “I am sorry that your sick! XOXOXOXOX I love you.”
“I’ve been very honest and forthright with all of them,” Batchelder said.
To look at Batchelder, one might not assume that he is near death. His hair is wispy and his voice weak, but he can still walk and do chores, such as mow the lawn, though some days he does not have the strength to get out of bed.
This is not the life he planned when he moved to the Upper Valley four years ago to be near his father, who was ill. Batchelder grew up here, but had been away for a while. After graduating from Hartford High School in 1983, he served a stint in the Army and worked as a respiratory therapist in Ohio before returning to his roots.
Batchelder arrived in the Upper Valley in May 2009 and got a job at Keene Medical Products, a supplier of home health equipment. He was joined by Carsey several months later in September. Carsey brought their daughter Samantha, who was then 2 years old, and immediately became pregnant with Kailyn.
Carsey saw New Hampshire as a better place to raise children than Columbus, Ohio, where she grew up. And for several months, everything seemed to be going well until Dec. 14, when the family received some bad news.
Batchelder was diagnosed with colon cancer.
“There I was with a cancer diagnosis and with my girlfriend pregnant and not knowing whether I’d see that child,” Batchelder said.
It was a shock, Carsey said, but there was still hope. Batchelder underwent surgery in January and, three months later, everyone believed he was cancer-free, she said. They were mistaken.
By May 2011, Batchelder was experiencing shortness of breath. An X-ray of his chest revealed that there was an area of his lung that was cancerous. Again, he had surgery to remove the tissue and then received chemotherapy after that. Still, everyone was hopeful Batchelder would beat the disease.
The following year, however, during a routine check-up, doctors discovered that the cancer had spread to his bones. There was little hope that he could be cured.
“I had high hopes that he had beaten this cancer and would survive and live a long life with me and our children,” Carsey said in an email to the Valley News. “Now that the cancer has returned with a vengeance it is hard to keep the faith that there is going to be a miracle cure and that he will survive and beat this cancer.”
There will be one day, possibly very soon, when today’s most lethal cancers will not be a death sentence, Pipas said. Medicine is “changing at a blinding rate” and nowhere are things changing as quickly as in cancer care, he said. Dozens of articles appear every month about new research and in the next three or four years, there will be major breakthroughs in treatment.
“I like to tell my medical students, we are just leaving the Middle Ages in oncology and we’re just moving into the Renaissance right now, where things are going to change,” Pipas said. “We’re getting away from hot pokers and boiling oil and we’re going to be moving into things that are much more elegant and less harmful for people.”
Unfortunately, those treatments are likely to come too late for Batchelder.
Long before Batchelder’s cancer was diagnosed, and ever since Carsey has known him, Batchelder has been talking about opening his own extended care facility for seniors.
He grew up in the business of senior care. Batchelder was 8 years old when his parents brought an elderly man to their home to stay and be cared for. Eventually, there were other individuals, including a woman with arthritic fingers who could still play a piano and move him to tears, and his parents established several senior living facilities in the Upper Valley.
Batchelder has a sentimental attachment to caring for older people and has discussed his vision for the business with Carsey, who works at Kendal at Hanover. But since the diagnosis, Batchelder has felt pressure to move his dream out of the clouds and make it a reality.
“I’d like to be able to get it up and started. The main purpose of it is to provide some more stability for them,” Batchelder said, pointing to Carsey and their daughters, who were sitting at the dining room table with him one afternoon in August. “Because their whole world is going to go upside down.”
Financial stability is a common concern that people who are dying have for the family they leave behind, said Sachs, of Dartmouth-Hitchcock. Perhaps it’s not as romantic as some other life goals, the “bucket list” of adventures like jumping out of an airplane or climbing Mount Everest. But it is no less important.
“For many, many people, especially people who have a strong sense of themselves as caretakers, making sure that the people they have loved are adequately provided for and protected and not left to deal with the details of an unfinished life, in terms of logistics, is very, very important,” Sachs said.
Families are an important part of those conversations, but it can be challenging to sort through individual needs, Sachs said, particularly if a family member’s goals conflict with those of the patient. The conversations can be emotional.
“For many people, it is impossibly hard to accept the fact that you’re dying. It is as hard or harder to accept the prospect that somebody that you love is dying,” Sachs said. “And you have to live with that, not only up until it happens, but after it happens.”
Carsey and Batchelder have had these conversations together, some of which “had a lot of tears in them,” Batchelder said. Even recalling them caused Carsey to pause for a moment and wipe her eyes.
Carsey said she struggles to express her emotions said she is still working her way through the grief of Batchelder’s terminal diagnosis. First she felt upset, then angry and resentful, then guilty. Batchelder said Carsey has been “tremendously supportive,” but Carsey still has moments when she directs her anger toward him.
“I would much rather have that sense of hope and looking towards the future and building a life instead of focusing on how I’m going to bury one,” Carsey wrote in an early morning email last month . “Tom gets the easy out. I’m the one that is being left behind to pick up the pieces and mend them in some form or fashion. I’m going to have to deal with the loss, loneliness and pain. Not only my own but our children.”
Each time the anger surfaces, guilt follows, Carsey said. She prefers to focus on the day-to-day tasks, the details of what must be done.
Carsey supports the idea of starting an extended care business. She has experience working in senior care as a nurse. She believes the business could provide the financial stability that her family needs, and also allow her more time to be with her children. Currently, she spends all night working, arriving home just before the kids have to wake up and go to school. Then she catches up on housework during the day, prepares the kids’ dinner when they get home and then tries to take a nap after they go to bed before she begins work again. She earns just enough to support the family and pay rent and bills, though they live paycheck to paycheck.
The house they rent is large and expensive to heat, Carsey said, which is why her top priority is not to get Batchelder’s business launched, but rather to find a smaller place to live.
“He’s the dreamer and I’m more practical,” Carsey said. “I look at short-term things. I’m thinking, OK, if he does pass away, what do I do now? So I’m thinking, OK, let’s move next. Let’s get into an apartment that I can afford on my salary.”
Appreciating the Moment
The day before the interview in August, Batchelder had been taken to Dartmouth-Hitchcock Medical Center in an ambulance because of severe pain in his knee. At the time, he believed it was unrelated to his disease. He was wrong.
Last month, doctors told him the cancer had spread to his knee. An experimental treatment he’d been getting for nearly four months as part of a clinical trial clearly was not working. He recently underwent a different chemotherapy treatment.
Most days, Batchelder spends resting at home or in a deep sleep from the pain medication and drugs.
His daughter, Samantha, knows to dial 911 if she cannot wake him and no other adult is present, Carsey said. Neither Samantha nor Kailyn fully appreciate what it means to die, Carsey said. Even Carsey has a difficult time understanding it.
“I have a hard time wrapping my head around the fact that he could leave them at anytime and they are such Daddy’s girls,” she wrote in the email.
When talking with children, it is important for them to understand first and foremost how they will be cared for and what their lives are going to look like, Sachs said. It is also important that they know they didn’t cause the death.
“A developmental piece that children have is some magical thinking of being able to separate the wish from reality,” Sachs said. “If they were angry at you a week ago and you’ve been diagnosed with a terrible illness or something terrible happening to you, they can very commonly carry the fantasy that they made it happen.”
In discussions with terminal patients, Pipas said, he likes to focus on short-term, specific life goals rather than emphasizing treatment. For example, here in mid-October, the goal might be to have a patient feeling as good as possible by December so he can enjoy Christmas with his family. Then, they might work toward having a good Easter. Then the Fourth of July.
“Focusing on those goals for family events or holidays resets the conversations with people rather than saying, ‘Well, we’re going to focus on you getting to your next chemotherapy treatment,’ ” Pipas said. “Because, for me, if I had terminal cancer, I certainly wouldn’t want to be thinking about my next chemotherapy treatment. I would like to be thinking about that treatment as a minor inconvenience while I’m going toward a good Christmas with my family.”
Batchelder wants to live as long as he can. He hasn’t given up hope that his cancer could go into remission, or that he could have many more years with his family and leave them in a position of financial stability.
The day trips to parks, the beach, Montshire Museum of Science and other places have helped the family focus on something besides paying bills and preparing for death. A favorite outing for Samantha is Huntley Meadows in Norwich, a place she calls the “super-duper fun park.”
There have been times when Carsey has imagined taking the girls and leaving. This was not what she signed on for, she said.
But then, if she’d done that, it would have divided the family and caused her children more pain. Carsey said she could not have lived with herself had she left. And so, she has decided to stay and let the girls spend as much time as possible with their father, while they can.
“They need all the time they can get with him,” Carsey said. “I’d never deprive them of that.”
Chris Fleisher can be reached at 603-727-3229 or firstname.lastname@example.org.