In Sickness And In Health
He got cancer, then she had an aneurysm, and each was forced to become both survivor and caregiver. Then their dog got sick. Here’s the amazing story of Emme Tomimbang, Jim Burns and Rufus
It’s an island moment Emme Tomimbang would prefer had never happened. For all the glamorous and illuminating stories Tomimbang has told in her broadcast career, the one riveted with the most drama is her own health scare and that of her husband Jim Burns.
Life, she has found out, is not scripted like her award-winning documentaries and TV specials. Life is improv with a limited supporting cast. But having a lead role, she is writing the script on the most courageous and challenging chapter of her life.
Coping with two major health traumas – Tomimbang’s brain aneurysm and Burns’ throat cancer – is a compelling story they’re sharing with MidWeek readers, the first time they have done so publicly. Keenly private in real life, they have kept their health crises quiet, not wanting to stage a public pity parade.
This is also their chance to offer a “shoutout” to medical professionals and others who came to their aid and are even now helping them through a perilous journey.
Both are at a crucial stage in their healing process. Now more than ever, family and friends must understand how they are adjusting to a new normal in the activities of daily living. For patients such as Tomimbang and Burns, it’s not the angst of diagnosis that drives healing, but survivorship.
The new normal involves medication regimens, life structured around doctor’s appointments, the seeking of trustworthy support and, in Burns’ case, learning a simple task like swallowing all over again. Try doing it with no saliva and no taste.
We meet at the Kailua home of Honolulu’s power couple. Tomimbang is her delightfully animated self, greeting us in curlers (a photo shoot is about to happen). Burns, prominent retired Hawaii Intermediate Court of Appeals judge, is disarming in his lanky frame and striking resemblance to his father, the late Gov. John A. Burns.
Rufus, the couple’s pet Rottweiler, escorts their MidWeek visitors to the spacious house where Gov. Burns once resided with first lady Beatrice. Family photos and memorabilia remind us of the prominent place the Burns dynasty has in Hawaii’s political and social history.
It seems incongruous for such heroes to have any fragility. Gov. Burns, after whom the UH medical school is named, died of colon cancer in 1975 at age 66. Mrs. Burns had polio and died of cancer in 1988 at age 82.
Two years ago, their second eldest son Jim, 76, was diagnosed with oropharynrynx (throat) cancer after detecting swelling in a lymph node. Last summer, Tomimbang collapsed at home and was hospitalized for a brain aneurysm that bled into her cranium.
“My brain is in reboot,” Tomimbang says while explaining that she has occasional short-term memory loss. She has prepared for the interview with written notes, lists of medical personnel and dates of key events.
Her attention to detail is typical of a journalistic mind that is wired for accuracy and hard facts. Her conscientious approach to caregiving is just as thorough, we learn.
As we turn on a recorder, Tomimbang, 62, begins her extraordinary story.
“My two-year journey of caregiving began with my best girlfriend having a stroke just one day after returning from the Philippines in April 2011. I helped her family care for her.
“Then it was my mom, Nena, 85, who had surgery and was hospitalized with a trach (lung) ventilator for six months. I spent five- to six-hour shifts with my sisters giving her ’round-the-clock support.
“In October of 2011, Jim,was diagnosed with stage 4 throat cancer. We found out just days before our first vacation together to visit relatives in Australia. We were going to cancel the trip, but our internist encouraged us to go and enjoy ourselves, because upon our return, we had to be ready for Jim’s treatments and caregiving.
“Boy, was he right!” exclaims Tomimbang.
“When we returned, I hit the ground running – going to meetings with Jim’s doctors, radiologist, oncologist and ear-nose-throat specialist. There was so much to learn almost overnight.
“You are never prepared for caregiving. Most of the time, you are thrust into it, flying by the seat of your pants. You are emotionally wrought, feeling insecure and scared while trying to make sense of everything.”
To complicate matters, Burns was hospitalized twice with pneumonia during the course of his radiology and chemotherapy treatments.
“In January of 2012, my mom was moved into a high-skilled nursing home across from Kuakini Medical Center, where Jim was being treated. So I was literally running back and forth from the nursing home to Kuakini several times a day. It was beyond exhausting,” she recalls.
“All this time, I had my EMME Inc. office opened part time. I resumed some television work on a Hawaii 5-0 retrospective. I wrote during the early morning hours after taking care of Jim, whom I had to tube feed with nourishment and meds for nine months. I would sleep for a few hours and then wake up to resume caregiving duties.
“The day after I finished producing and writing the one-hour show, Hawaii 5-0 Revisited, and sent it to the editor for completion, my life was forever changed and altered.
“Last May 16, I collapsed at home just after Jim left with our friend for a doctor’s appointment. I was home alone. It was Rufus, our 9-year-old Rottweiler, who opened my room door, sliding it with his nose. He woke me up, and we somehow crawled to the phone to call Jim.
“When Jim answered and learned of my situation, he asked if I needed 911. I said yes. That’s all I remember. Then I awoke with EMT (emergency medical technicians) and firefighters in my room.
“By then, Jim came home and the next thing I knew, I was on my way in the ambulance to Castle Medical Center.
“There the emergency room doctor said I had a ruptured aneurysm and sent me immediately to Queen’s Neuroscience ICU unit. My neurologist, Dr. Sung Bae Lee, performed an endovascular coil embolization, placing a catheter through my blood vessel to the back of my head and into my brain. They placed two platinum coils to stop the bleeding.
“When I woke up, it was about a week later,” Tomim-bang recounts.
According to Dr. Lee, “Hemorrhage from a ruptured aneurysm can be catastrophic. A large percentage of people do not make it to the hospital or suffer significant disability. However, with advances in medical care, patients are having better outcomes today than previously.”
Judge Burns, Tomimbang’s husband of 26 years, made daily visits to his wife, giving strict orders that no visitors be allowed in order to give her complete rest.
“From the time my treatment started,” Burns recalls, “Emme was a 24-hours-perday, seven-days-per-week expert caregiver. She did all that was necessary for her to learn what to do, how and when to do it, and then she did it. It was a demanding job, and I have no doubt it contributed to her serious health problem.”
“Although I did not expect to be a caregiver for myself, watching and listening to her while she cared for me sufficiently educated me on what I needed to do when she was no longer able to care for me,” he says.
Says Emme: “In July, I went back to visit my mom, whom I had not seen for months. Unfortunately, she was not doing well, and in August, we lost her.
“It wasn’t until October before I finally regained the energy to resume activities, such as driving. I have another brain procedure set for December.”
As 66 million family care-givers in the nation know, coping with the intimidating and unfamiliar responsibility of caregiver is fearful and often overwhelming.
In the case of Burns and Tomimbang, we see an example of yet another trend – that of couples caregiving. The implications for health care reform, social and economic impact are far-reaching.
The National Alliance for Caregiving estimates that family caregivers provide an estimated $375 billion worth of uncompensated care to loved ones annually.
Wrapping one’s mind around the issue is a challenge in itself. But when credible people such Tomim-bang and Burns present the realities of the situation, we tend to take notice.
As we wind up the interview, Tomimbang, true to her film production nature, asks about rolling credits for the medical cast that treated her and her husband. That would be Burns’ medical team of Dr. Kenneth Sumida, Dr. Mark Kanemori, Dr. Meredith Pang, Times Kailua pharmacist Jim Rexroat; and Tomimbang’s team of Dr. Vincent Riston, Dr. Sung Bae Lee, nurse-niece Juliete Beniga and emergency medical technician Pierce Machigashira.
By the way, another member of the family had health issues as well – Rufus.
“Jim and I were in slow but good recovery, and we noticed Rufus was limping and looking weaker than usual,” Emme says. “So we had to get him checked. They warned it might be several things, including cancer. After his MRI – good news, no cancer – they found progressive arthrities and signs of hip dysplasia, which most big dogs have. So now we’re caring for Rufus, who has been caregiving us.
“Rufus always hits my hand off the computer each day about 2:30 p.m. to remind me it’s time for my nap.”
Learn about survivorship and caregiving at the Journey Together Cancer Survivorship Conference Tuesday, June 11, 9 a.m.-4:30 p.m., at Hale Koa Hotel. Emme Tomimbang speaks on “Caring for the Caregiver: How the Caregiver Can Get Into Trouble” at 1:25 p.m. The $25 fee includes continental breakfast, lunch and parking. uhbooks.hawaii.edu/conf erence/hcccc2013.asp