Too Close to Home: Dealing with Family Illness
Nov 29, 2013 10:49AM
● By MED Editor
To say that 2013 has been a difficult year for Theresa Cameron would be an understatement. While her colleagues were following the healthcare debates and grappling with digital medicine, rising patient loads, and reimbursements, the Aberdeen PA’s head and heart were with her extended family, as they faced one health crisis after another. It started when her 18-month-old granddaughter, Cameron, was diagnosed with Stage III T-cell lymphoblastic lymphoma in June.
“My daughter, who is a PT in Vermillion, just thought it was strep throat so she asked to get a strep done,” recalls grandmother, Theresa, who works at Sanford Aberdeen Medical Center. “The doctor felt like something just didn’t look right. So they looked further and they found it.”
Little Cameron was hospitalized at Sanford Children’s Hospital in Sioux Falls, where she began the first round of a chemotherapy regimen that will last three years. Around the same time, Theresa’s other daughter developed problems during her second pregnancy and delivered her son, Bronsen, a month early in Sioux Falls in September. The baby was admitted to the NICU with heart problems.
“At that point, I felt like I wasn’t so much a provider anymore as a mother and grandmother,” says Theresa, who regularly made the 3-hour trip to the Sanford campus in Sioux Falls, spending time in both the NICU and The Castle.
“Sometimes it is really heart-wrenching. When Cameron first went in, they couldn’t intubate her because the mass was too large. When they put a tube in her, I thought, ‘I can handle this.’ But when they were actually doing the procedure, draining more than 750 cc’s from her lungs, she was looking right at me with a look like ‘Why are you letting them do this to me?’ and I almost passed out.”
Although Bronsen is now home in Aberdeen, Cameron’s chemotherapy continues. Because Theresa’s work schedule is more flexible than her daughter’s, she is often ‘on call’ to help with her granddaughter in Sioux Falls.
“Being a provider for 20 years, you have your family of patients, but in a crisis like this, your own family has to take priority,” says Theresa. “Sometimes, it can be hard to break away from the loyalty you feel to your patients.” Another challenge, as a provider supporting her own family in a health crisis, has been coping with and expressing what she knows – and doesn’t know – about their medical situation.
“I’m in medicine but I don’t do pediatric oncology or pediatric cardiology, so it’s not always easy even for me to decipher exactly what’s being said,” says Theresa. “Family members ask me, what does this mean? What does that mean? And it can be frustrating if I can’t explain. On the other hand, sometimes, you know too much. People will say ‘Oh, I know someone who had that. That’s curable.’ But I know that it is much about the T-cells and the B-cells. I think it can actually be worse knowing and understanding the deeper parts.”
When speaking with Cameron’s oncologist, for instance, Theresa says she often has very specific medical questions that an ordinary patient might not ask. “I don’t want to annoy them. But I have done a lot of research and I have a lot of legitimate questions,” says Theresa. “I have found that it can be hard knowing where to draw the line.”
Bronsen and Cameron weren’t Theresa’s only worries this year. While her grandchildren were sick, her nephew was killed in a serious accident. Rather than making her bitter, though, Theresa says this year’s personal challenges have helped to make her a better provider.
“I think I have less tolerance for whining in my patients, for one thing,” she says. “When a patient comes in – again – with a relatively minor complaint, it’s tempting to say, ‘You think YOU have it bad…’ I don’t, of course. But I do think I am better able to be firm with the people who need it and encourage them to buck up and make changes, if they need to. I no longer enable them.”
At the same time, Theresa says her level of compassion and empathy for patients and their families dealing with serious illness – especially cancer – has grown by leaps and bounds.
“For one thing, when they talk to me about oncology terminology, I understand what it means. I think I have always been compassionate, but now my understanding is deeper and I can relate more to the fear and the overwhelm. In the past, it was natural to just say, ‘It’s going to be OK.’ But now I can truthfully say to the family, I really know how you feel.”
Today, as she awaits the birth of more grandchildren – a set of twins due in April – Theresa looks on 2013 as a opportunity to learn things that couldn’t have been learned any other way.
“It’s not like you can just Google ‘How to deal with a relative with cancer’,” she reflects.” You have to live it.”