The Road to Recovery. Coming Together. Moving Forward.
The esophagus is the tube that moves food from your throat to your stomach. When esophageal cancer makes it necessary to remove the esophagus, the stomach is surgically narrowed and pulled through the chest to connect to a short portion of the esophagus in the neck.
This meeting was the first gathering of esophageal cancer patients treated at Dartmouth-Hitchcock Medical Center. Since esophageal cancer is rather rare, few patients have ever met anyone who had to go through the same experience. However, through the Dartmouth-Hitchcock Medical Center/Norris Cotton Cancer Center esophageal cancer program, past patients can volunteer to be an advisor to newly diagnosed patients. Many patients at the reunion had developed relationships over the phone, but had never met in person, until now.
Facing a diagnosis of esophageal cancer
"One-third of my stomach is gone," said John Ricci of Sunapee. "Then they took part of it and stretched it up to here because my esophagus is completely gone," said Ricci motioning at the top of his collarbone. The 63-year-old carpenter and cabinetmaker is slender, agile, and tanned from working outdoors.
An endoscopy identified his problem. "The doctor saw the tumors and said 'I hope it's benign.' That's when I realized what he was talking about. I couldn't get over the c-word. It was scary at first. But he said it was curable. That was back in 2009. I don't think about it much anymore. I do still joke about it from time to time," said John.
John's diagnosis was esophageal cancer. His treatment included chemotherapy, radiation, and an esophagectomy.
What is an esophagectomy?
An esophagectomy is surgery to remove part or all of the esophagus. The surgeon makes incisions into your chest and abdomen to remove the cancer. In most cases, the surgeon pulls up the stomach and joins it to the remaining part of the esophagus.
During the operation, the surgeon places a feeding tube into the small intestine. This tube gives patients nutrition while they heal. It is commonly used for 1 to 2 months after surgery.
As part of Norris Cotton Cancer Center's new Esophageal Cancer Program. All patients receive:
- A personalized care plan mapped out by the multidisciplinary team of thoracic surgeons, thoracic oncologists, and radiation oncologists.
- An assigned nurse navigator who guides them through the many phases of esophageal cancer care.
- A patient information packet, which includes educational material about esophageal cancer, provider contact information, dietary instructions (including recipes for esophagectomy patients), care management resources such as the Visiting Nurse Association and rehabilitation, and tools from the social work department including advance directive and durable power of attorney information.
Eating after an esophagectomy
"Eating is a little different now. I can't overeat," said John. He described the feeling you get after a Thanksgiving feast, but with greater intensity and discomfort.
Mike Martell from Hartland, VT, who estimates one-half of his stomach was removed, said he feels like he had a gastric bypass. "I used to be able to eat whole large pizza. Now I have one piece and I get sick."
Mike had his esophagectomy in July. His feeding tube was removed just before the reunion got underway.
Adventures in tube feeding
This past August, Mike, who was sick of feeling sick, decided to go camping with his wife Rhonda while he was still tube feeding. Sitting in the dark of a 1989 motor home, Mike waited for the contents of a bag suspended from an IV pole to drip into his stomach port. But he couldn't fall asleep. He just wanted to lie down.
Mike's fellow esophagectomy patients laughed listening to him describe how he navigated the narrow dark bedroom doorway of a 29-foot camper rolling an IV pole, trying not to wake his wife. (She said she heard every thump, rattle, and curse, as the IV pole came through the door horizontally. But she never said a word.)
John, who isn't used to sleeping more than 4-6 hours a night had trouble finding time for tube feeding. "The bag had to hang 8 hours. I used to go to bed with it but sometimes it still wasn't done by morning and I'd have to sit there and wait."
Adjusting to a new digestive system
An esophagectomy changes your life. It's a long, slow recovery. Patients shared their level of discomfort with one another. Much of that discomfort is physical, other times it is not.
"Hardest part was the healing, it is painful, really painful," said Mike.
"Twenty-five pounds is about the limit I can lift now. I used to be able to lift 200 pounds. I did a roofing project one time with 200 bundles of shingles, each 80 pounds. I carried each one up the ladder by myself," said John who has modified his workplace to accommodate the physical limitations that accompany an esophagectomy.
Mike has yet to return to his job at an area high school where he stacks cafeteria supplies all afternoon. He isn't sure what his long-term recovery will look like. The gathering gave Mike a chance to talk to John about his recovery from an esophagectomy.
"I am only 54. I don't want to retire. I am too young to sit at home watching the Young and the Restless all day," said Mike.
The unseen hero of the esophagectomy: family members
Looking at the small clusters of couples sipping freshly blended smoothies and snacking on Swedish meatballs and artichoke dip—it's clear that this is the "after" picture—the end result of a large team effort which includes thoracic surgeons, radiation therapists, hematology-oncologists, nutritionists, physical therapists, social workers and, most importantly, family members.
Most patients brought their spouses and acknowledged them as pillars in their recovery. Verne and Susan of New London were glowing with gratitude, emotion, and pride when discussing the role their children played. "My son and son-in-law rotated mowing the lawn," said Verne. "My daughter was always there. We didn't have to do anything," said Verne stopping himself short for one reason. "I don't want to get choked up or anything."
Better laughter than tears, this was truly a celebration. To have gone through radiation, chemotherapy, and such a complex surgery changes your life. And everyone here today will tell you, it gives you more life to live.
Check out Norris Cotton Cancer Center's Facebook page to see more photos from the reunion.
November 20, 2012
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