A cancer battle and the doctor-patient bond it created

One patient’s experience fighting CLL

Jose Santiago just celebrated his 53rd birthday. He’s a family man, with a loving wife, teenage children and a 2-year-old toddler. He worked in business management, bringing in a steady paycheck and living a modest but full life in Connecticut. Until his diagnosis.

Eight years ago, Santiago went in for routine bloodwork to check his sugar levels, part of his regime to regulate his Type 1 diabetes. That bloodwork changed his life forever.

“This was basically a routine blood check, and sometimes I would skip those because I check my blood every day,” Santiago said. “It can be expensive to go to the doctor, too. People often try to avoid it. But if I wouldn’t have gone for that, we never would have known.”

Elevated white cell counts led doctors to look closer. What they found? A rare case of chronic lymphocytic leukemia (CLL)— a disease typical diagnosed in older people, according to Santiago’s medical hematologist-oncologist, Vipra Sharma, MD.

“A quarter of all leukemias are CLL, and it is usually a disease of older people. Most people diagnosed are in their 70s, and he was in his 40s,” she said.

Santiago travels an hour to see Dr. Sharma, opting for the expertise at the Hartford HealthCare Cancer Institute at St. Vincent’s Medical Center in Bridgeport over closer, more convenient options. He says the levels of expertise, care and empathy outweigh the burden of getting there.

When you are dealing with a serious disease, you need the best.

“I dealt with a lot of doctors, and when you are dealing with a serious disease, you need the best, someone who truly cares about you. I really, genuinely, think that she cares,” he said. “She starts every conversation talking about my kids and family, asking about them. She always asks if a course of action is okay with me. I trust her with my life.”

“It’s a cliché when people say you would treat them as a family member, but I do,” Dr. Sharma said. “I like to hear about their lives; it makes me feel closer to them. I know where Jose’s daughters go to school. I talk to his wife frequently. He probably sees me more than he sees any other doctor.”

There is science to this approach. The doctorpatient bond is important for both the physical and mental care of the patient.

“Sometimes the doctor appointment ends up being the place where patients can talk the most,” Dr. Sharma said. “We find out who’s going to be home with them, who’s getting their groceries, who they are, really. With Jose, this is not a diagnosis I can change, I can’t cure it, but I want him to have a fulfilling life.”

Santiago says Dr. Sharma’s support throughout these treatments helps him to keep going. For her part, the doctor stresses the importance of humanity in the cancer world.

It’s one of the most vulnerable times in a patient’s life; no one is ready to be diagnosed with cancer

“It’s one of the most vulnerable times in a patient’s life; no one is ready to be diagnosed with cancer,” she said. “It can be as simple as returning the phone call yourself instead of having someone else do it. It’s about building relationships. I take a patients’ trust very seriously. Literally they are putting their lives in your hands. Some patients can get away without having to have treatment, but his disease is a little more aggressive than some.”

Santiago says, physically, the treatment can feel as bad as the disease. He gets monthly intravenous immunoglobulins, which can take anywhere from four to eight hours.

“You can actually taste it in your mouth, it is so nasty,” he said. “Then within hours you get the worst back pain. Or a strong headache. You never know what you are going to get.”

He may soon have to go back to intravenous chemotherapy, as his cancer is progressing. That regiment leaves him irritable and tired all the time, but unable to sleep.

“What keeps me going is I see these babies, these children, getting chemo, and if they’re trying to get better, I can try to get better,” he said. “I’ve got to keep fighting. It’s worth it.”

But a chronic leukemia diagnosis affects patients mentally, too.

It’s been a battle, but I thank God every day that I get up

“I don’t like being alone. I start spinning: How long do I have to live, what else do I have to go through, what’s going to happen to my family. But you know what, I’m here I’m alive,” he said. “There are times I want to give up, times I don’t want any more treatment, I don’t want to deal with the hospitals. It becomes overwhelming. It’s been a battle, but I thank God every day that I get up, and I’m able to see my children and my wife.”

Dr. Sharma works to provide holistic care through the Hartford HealthCare umbrella, bringing in psychologists, social workers, and other disciplines, so the patient is thoroughly and continually supported.

“There is always a psycho-social component. Hartford HealthCare has a multi-disciplinary team. I’ll say, ‘I can help you with a, b and c, and I can listen to you, but I think you need something more,’” Dr. Sharma said. “Patients see oncologists more than any other physician, but we can’t do everything for the patient. We have a whole team to step in.”

In fact, she joined Hartford HealthCare because of the team’s commitment to treating the whole patient while treating the disease, together as an interdisciplinary team.

“Nobody wants to be just another patient. They want to be an individual, and the care we give them is individualized,” she said. “There are so many variables in why we do what we do for each patient. Everything is multi-disciplinary. It’s to the patients’ benefit. Sometimes, one person sees something one way, and another person sees it another way, and working together, they get the best care.”

Santiago says this path of treatment gives him more strength to live his fullest life. While he had to leave his job eight years ago, he’s spent his time since getting a master’s degree in social work, and, until COVID-19, he volunteered at a substance abuse clinic, helping people through one-on-one sessions and group therapy.

He tries to spare his kids from too much burden, but, especially with the pandemic, he says it can be difficult to hide his pain.

“The first few hours of the day is like warming up your car. It takes me a while to get out of bed, to get myself going, and the kids have to see that because now they’re long-distance learning. I try to play tough guy, and not let them see me, but sometimes I’m in the bathroom crying, and I know they hear me. I try not to put too much on them.”

Having an outside influence like his medical oncologist be so involved and affirming helps a lot, he said.

It gives you hope

“From the day I met her, I felt confident in what she was saying, I felt comfortable in talking to her. She always has a solid plan, and if the first option doesn’t work out, we’re going to do the next thing. And if that doesn’t work, we’ll do this, and then that. There is always something we are trying,” Santiago said. “Instead of being dry and constantly telling me it’s a very serious disease, which I already know, she attacks it with a plan. It gives you hope.”

This is just one example of Hartford HealthCare St. Vincent’s Medical Center bringing more specialists and providers to the community. Tune into Hartford HealthCare St. Vincent’s Medical Center’s Facebook Live discussion, where you can ask your questions, Thursday, December 17 at noon. And for more information, log onto hartfordhealthcare.org/cancer or call 855-255-6181.

This is just one example of how Hartford HealthCare’s St. Vincent’s Medical Center is bringing more specialists and providers to the community. Tune into Hartford HealthCare St. Vincent’s Medical Center’s Facebook Live discussion, where you can ask your questions from COVID to new care coming to the area, Thursday, October 29 at noon. And for more information, log onto hartfordhealthcare.org or call 855-300-6933.

Dr. Vipra Sharma, MD