She is tiny, losing weight, and wears a cap to cover a hairless head. She has herself recently removed the last few scraggly tufts of hair. "It was good before when some hair was showing below the hat. Now that it's all gone," she said with a sigh, "everybody can tell that I have no hair at all."
Her breast cancer of ten years ago, which she had triumphed over after a long, courageous, all-out struggle, has returned. After eight years of no cancer and a normal busy life with Larry: home, family, friends, camping, travels near and far -- now this.
And the cancer has metastasized. After returning from a cruise, she felt pain in her hip and had trouble walking. After tests, doctors at Yale-New Haven gave her the bad news: secondary cancer, or "breast cancer in the bone." It is the same diagnosis received by Elizabeth Edwards, the wife of John Edwards, former U.S. Senator and candidate for president. It is a sobering diagnosis.
Then a tumor was found on her liver, requiring surgery at Bristol Hospital in an attempt to "burn" the growth off. And now another spot has been found on her liver, not necessarily cancerous, but she has been told that "something is there."
So why is Elaine Duval smiling? Why is she happily chatting away with Nancy, the nurse who comes out to take her vital signs and prepares her for the chemotherapy session? Why is the talk all about Nancy's new grandchild, her first, and how wonderful grandchildren are, and not treatment options? Come to mention it, why is everybody at Hope Clinic, patients and staff, smiling and seeming to be having a grand old time?
It is obvious now that Elaine and Larry are among dear friends. Even as Nancy professionally gets Elaine hooked up for chemotherapy, she does so with the intimate familiarity and caring of a friend. While on paper Elaine is the patient and Nancy is the "care provider," a fly on the wall can see that they are two human beings in this cancer thing together. Nancy calls Elaine "honey," as in "Any questions, honey?".
Elaine's family doctor suggested that she try Hope Clinic and she has been coming here for two years now. She knows everybody and everybody knows her. Nurses come to Elaine and Larry's Christmas party and have met their entire extended family. The chatter is constant and unrestrained as it is always among friends. After all, there are so many more interesting things to talk about besides cancer!
This comes as no great surprise to Barbara and me because we have been hearing about Hope Clinic for a long time, as well as meeting Hope Clinic nurses in Elaine and Larry's home. At a time when the newspapers are filled with horror stories about heartless, incompetent, expensive and inaccessible medical care, both Elaine and Larry go around singing the praises of Hope Clinic.
Of Dr. Virginia Wettstein, the owner and founder of Hope Clinic five years ago, Larry said:
"Wait until you meet Virginia. She is an amazing woman. She doesn't want you to call her doctor. She says, 'Call me Virginia.' She sits on the examination table and explains everything. She says we have many choices and we're going to find the right once. She's gentle. She's caring. She speaks beautifully. She knows her stuff. She's phenominal in every way. When she started the clinic five years ago, she took all the best oncology staff from Bristol Hospital. On top of all that, she's adorable."
Having lost his wife to cancer, and having seen firsthand a different kind of cancer care in New York, Larry has some basis for comparison. "Our doctor sat on the edge of the bed and, in effect, told us that she was going to die, " Larry said. "I wanted to slam him against a wall and kill him!" After that, he just went through the motions.
Elaine also experienced the trauma of unfeeling, doctor-centric cancer care during her first struggle with breast cancer ten years ago. She said, "The oncologist at Danbury Hospital was high-strung, insulting, arrogant, even to the point of making remarks about Larry and me not being married. He wanted me to take tamoxifen and I didn't want to. When I told him I didn't think it was a good idea, I'll never forget what he did next. He raised his arm and pointed at the door and said, 'There's the door.' "
"Excuse me," Elaine said to the oncologist. "It's my body. I have a right to ask questions about my treatment."
But it was clear that this oncologist did not want patients asking him those kinds of questions. "I didn't like the way I was being treated," Elaine said. "They were running an oncology factory. They isolated me. One time they put me in a storage room all by myself. I received no PET scans or CAT scans. They were indecisive about treatment, except for insisting on tamoxifen. That's why I know the difference between good care and bad care. That was bad care. This is good care."
The first time Elaine went to Hope Clinic, Dr. Wettstein asked her if she took tamoxifen. When she said no, Dr. Wellstein went on to explain that older women do not respond to the drug in the same way as young women and that it loses effectiveness after a few years. Almost immediately, Elaine felt she was in caring and competent hands.
When we first arrived, Dr. Wettstein was busy. With staff handing her notes and asking her to go here and there for quick consults, she only had time for a quick introduction and a handshake. But it was done with a smile and warmth for a couple of strangers coming cold to her clinic. "Please excuse me," she said. "I'm very busy at the moment, but I'll be back."
I had hoped to be able to talk to her for a few minutes and maybe take her picture. It didn't look like it was going to happen. I was wrong. After a while, Dr. Wettstein did come back and she sat and talked with us for at least 45 minutes. For some reason, never explained, she had a break in her hectic schedule and she spent it with us. With stunning openness, honesty, humanity, and humility, Dr. Wettstein (shown gesturing in the photo) spoke of what Hope Clinic is and why. And, remarkably, she did the same with her innermost thoughts and personal life.
As with Nancy, much of the conversation was personal: family, kids, goings-on, life in general. Dr. Wettstein and Elaine and Larry chatted amiably like longtime good friends. As the conversation went on, Dr. Wellstein spoke openly about cancer, her family, where she went to medical school, where she did her internship, how she got hooked on oncology, "rocky" times at Hope Clinic, and -- most fervently -- why her cancer patients are everything to her.
"I tell patients, yes, it's cancer," Dr. Wettstein said. "It's bad. We talk about it. Dealing with cancer is not going to be easy. But you still have a life to live. If you put a ton of bricks on top of you, you can't move. You have already lost. I think cancer is just another journey in life and we have to squeeze every drop of life out of every day. Life, that's my thing. And God. God is my guide in all that I do."
Dr. Wettstein stresses that all her patients are individuals above all else and this is a key factor in determining treatment. "Every patient is different. Every one has a different story to tell and, believe me, I hear all those stories. Everybody with cancer is on a journey and everybody goes on it in their own way. As far as treatment is concerned, what works for one may not work for someone else. If you put everybody in one bus, you're not tweaking it."
Naturally friendly and outgoing, Dr. Wettstein can't help but get to know every patient as an individual. "I'm friends with everybody," she said. "I know I cross the line this way and sometimes I get in trouble, especially with staff and business issues. It's hard to be friends and run a business and deal with finances. But that's who I am and I know that God will guide me."
She says her personal involvement with patients is beneficial to them even if it does violate the "professional distance" tradition of the doctor-patient relationship. "What this patient involvement does," Dr. Wettstein said, "is cut down on anxiety and reduce stress. There are no studies for it, but I think this approach makes a big difference in survival. Actually, I see the difference all the time."
Dr. Wettstein is from Indonesia and was brought to the U.S. when she was nine. She is the oldest of four children. One sister is a cardiologist and the other sister works at the Hope Clinic doing billing and accounts and general administrative work. Like everybody at the Hope Clinic, she goes about her duties with a permanent smile and warm manner. Her brother is a lawyer. Dr. Wettstein's parents live in New York City where her father, at 68, has a pracitice in internal medicine.
Her husband, Marcus, is an endocrinolgist who sees patients at the Hope Clinic on Tuesdays and Thursdays. With a husband working in the same space, three teenagers, and responsibility for Hope Clinic, Dr. Wettstein lives in the real world. And she shares her experiences in this world freely with patients.
Dr. Wettstein reminisced about her student days at the University of Pittsburgh. "I started as a music-voice major before switching into pre-med. My adviser called me into a meeting, I think after my third year, that I'll never forget. She told me that my grade-point average was not good enough, that she would not recommend me for medical school, and that I should think about a different profession. I just went into a depression. I left the University of Pittsburgh without finishing. If I can't be a doctor, I thought about working with special-ed kids. One thing I was sure of: I was never going to be a nurse. I'm just not a girlie girl. Then I happened to see a flyer for Ross University in the Caribbean, Dominica. I applied, took the entrance exam for medical school and passed. I went and got my medical degree from Ross University in 1991."
How did she get into oncology? "That's an interesting story," she said. "When I was a resident at Danbury Hospital (in Connecticut), we had to do oncology training. I really didn't want to do it. The whole idea of cancer was so depressing to me. I showed up the first day and told the supervising doctor that I had worked all night and I was too exhausted to work. I asked him if I could start the next day. He insisted that I work at least a few hours. I had no other choice but to work. I ended up staying all day. I found it very exciting."
What was so exciting about it? "First, it was not depressing as I had thought. And it's not all outpatient where you just see the patient in short intervals. You're with the patient and you hang with the patient. It's not all academic. It's about people and caring for them."
When Dr. Wettstein mentioned the name of the Danbury Hospital doctor who made her do oncology that day, Elaine looked amazed. It was the same doctor who had shown her the door when she refused to take tamoxifen! As it turned out, he opened doors for both. For Dr. Wellstein, it was to her life's work. For Elaine, it was getting the care she wants and deserves with the Hope Clinic.
While Hope Clinic is all about the patient, it must also survive in the often brutal financial world of today's money-driven health system. Hope Clinic is a business and it must succeed or fail as a business. Dr. Wettstein freely acknowledges that Hope Clinic is going through "rocky" financial times. "I admit that I'm not very good at business and it's because of me that we have financial problems. But we use a lot of medications that are expensive and we have to pay up front for them and its really hard to get reimbursed from insurance companies. Every medication has to be pre-authorized. Every medication has a code and if the code is not exact or if the reimbursement form has any little thing wrong with it, we don't get paid."
Many of Hope Clinic's patients are on Medicaid, the federal program for lower-income people. But Medicaid re-imbursements are much lower than those from Medicare patients and people with private insurance plans, often as much as 50% lower. Yet at Hope Clinic, all patients get the treatment they need regardless of insurance or lack of it. Elaine Duval will vouch for that.
Dr. Wettstein is sustained by her deep faith in God and her dedication to her patients. She ceaselessly tells patients like Elaine that they are on a difficult life journey and that they must live every day or else cancer wins. But she herself and Hope Clinic are also on a difficult journey of dashed dreams and financial hardship.
She is as open about this as she is about everything else. She talks about her purchase of the large historic Ingraham House at 156 Summer Street, a few blocks away from Hope Clinic. It was built in 1890 by the notable clockmaker, William Ingraham.
Dr. Wettstein envisioned Ingraham as an expanded-care Hope Clinic that would accompany patients on their cancer journey right to the end, whatever that might be. One floor would be a hospice for patients, all dear friends, living out their last days -- emphasis on living. There would be room enough for family to stay over and have 24-hour access.
It is not to be and Dr. Wettstein says it is entirely her fault. She hired an architect to draw up a plan to renovate the building. When she asked how much the plan was going to cost, she didn't get an answer. As things needed to be done, she approved work and had bills paid. "Everything was expensive," she said, "much more than I had ever imagined. And then I started getting these huge bills from the architect. I think he thought I was rich or something. I'm not. I don't have any money."
While her father put up money and his name is on the deed, all the bills for the Ingraham House had to be paid by Hope Clinic. "We couldn't do it any more," Dr. Wettstein said. "I couldn't let Hope Clinic suffer any more. Now the property is in foreclosure and the architect is chasing my dad for money. I still have the key -- you want to take it and give yourself a tour?"
We didn't take a tour, but did drive by to look at Ingraham House and take the picture, shown here. I imagined how content the hospice patients would have been in that historic building with lots of windows and light and open space. They would have completed their journeys secure in knowing they were "home"among friends and family.
"It was going to be home," Dr. Wettstein said. "It was going to be like people were in their own living room. While they are getting treatment, they could still talk to each other, do things like play cards and have the feeling that their lives are not over."
Instead, Ingraham House sits there empty, forlorn, and a money pit. Because of all the money lost to it -- hundreds of thousands -- and many bills still coming in, Dr. Wettstein's dad now starts his day checking prescription codes and reimbursement forms for Hope Clinic. Her Mom is lonely in New York City and wants to join family members in Connecticut.
Why don't her parents move? "My dad can't leave his patients," Dr. Wettstein said. "He loves them."
where she gets it.
Elaine and Larry left Hope Clinic with big hugs from Nancy and Dr. Wellstein. At lunch, Elaine was still aglow.
"Did you have a good time?" I asked her.
She thought. Her eyes moistened. The smile took over her tiny face.
"Yes. I always have a good time when I go to Hope Clinic."