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Inside a conference room at IU Health’s Simon Cancer Center Teresa Altemeyer recently offered a presentation to oncology nurses and social workers. The topic was “Resources for Patients, Caregivers and Healthcare Professionals.” The focus was on providing a support system for patients with Leukemia & Lymphoma.
The in-service presentation was one of many programs Altemeyer has had a hand in during the past eight years.
She facilitates a first Monday Cancer Support Group at IU Health University Hospital; she has penned a white paper on the importance of support groups; she has served on patient panels providing feedback to medical professionals; and she served on the Patient Family Advisory Council offering input to top management about Simon Cancer Center. In her role with IU Simon Cancer Center she met with a committee every month for three years offering advice on everything from parking issues to the white boards used in patients’ rooms. One whole session was dedicated to talk of patient-doctor communication.
In short, after her diagnosis with chronic lymphocytic leukemia (CLL) Altemeyer made a choice.
“I started helping in patient services because that’s where my heart is,” said Altemeyer, 67. “I’d hear patient stories and I became so aware of people who were misinformed and didn’t get the support they needed. Many people make it but they make it with a compromised life. I wanted to help them.”
It was June of 2009 when Altemeyer went in for a routine mammogram. Results showed bilateral enlarged lymph nodes. A biopsy followed and she was diagnosed with Chronic Lymphocytic Leukemia (CLL), a type of cancer that starts in the bone marrow and moves into the bloodstream. In CLL, the leukemia cells often build slowly over time and may not manifest for several years. An IU Health employee and neighbor of Altemeyer’s referred her to IU Health Simon Cancer Center where she met Dr. Azar.
“He was one of the few people specializing in CLL in Indiana and he was the one I needed to see. I saw him the day before he finished his fellowship so he calls me his ‘first patient’ and I call him my ‘first doctor,” said Altemeyer. They didn’t know then that the doctor-patient relationship would grow into a bond of education, care and support that deeply impacts other patients.
Altemeyer laughs when she shares one of the first lessons she learned as someone newly diagnosed with leukemia.
An avid gardener, she grew dinner plate sized dahlias and brought bouquets to Dr. Azar’s staff on one of her early visits.
“I didn’t know that you weren’t supposed to bring pollen into a cancer setting. I think Dr. Azar learned early on that I was one of the joyful cancer patients - so he decided to help me channel that passion and compassion,” said Altemeyer.
Azar first approached Altemeyer with the idea of joining another woman who had recently lost her husband in a battle with CLL, to facilitate a support group for patients and their caregivers who are diagnosed with blood cancers. Altemeyer agreed to do this and represented the patients’ eyes, ears and voice; the co-facilitator represented the caregivers’ eyes, ears, and voice.
In a paper Altemeyer wrote to the Heroes Foundation, the organization that funds the First Monday Support Group, she said: “As a group we have seen several deaths that opened our eyes to our own mortality and bring perspective on how to best live our lives - we have helped put aside the fears for some so that they can be less afraid of the progression of their disease and its twists and turns or what they might face at the end of their journey. We have mourned together difficult changes in members’ health and helped them to think through strategies to become more informed in facing inevitable decisions. The group has helped find resources to help with the emotions of cancer, in communicating with their doctors, in seeking other opinions or in looking for clinical trials. We have made hospital visits, driven hours taking fellow patients to places where unique clinical trials were offered, scribed doctors notes in appointments as a “second set of ears” and a member intervened with a doctor to get another patient an appointment and, timing wise, that gesture just might have saved that patient’s life. The patient believes that.”
That first Monday Cancer Support Group continues today – after almost eight years - at IU Health Simon Cancer Center Pavilion. And Altemeyer continues to find new ways to provide patient-to-patient support.
“My disease is slow growing so I didn’t begin treatment right away. It’s hard for people to understand when you tell them you have cancer,” said Altemeyer. “I didn’t have treatment for five years and then the disease began to manifest symptoms.” Under Dr. Azar’s care she began a clinical trial at an out-of-state hospital. She remains in Dr. Azar’s care as she continues with the trial.
“The prognosis for people with my genetic markers was poor,” said Altemeyer.” “Chemotherapy would most likely not have helped and I would possibly be dead now if the Leukemia & Lymphoma Society hadn’t helped fund the pivotal research that will eventually bring my trial medicine to the public.”
Altemeyer, a self-taught professional artist whose recent works include a one-woman show of water colors depicting scenes from the local Conner Prairie Interactive History Park, frequently pauses and says: “I hate using the ‘I’ word. I prefer to talk about others more than myself.”
But there is no denying that her diagnosis has fueled her passion and she has strong connections to IU Health.
Her husband Don Altemeyer, founding principal of the architectural firm BSA LifeStructures, designed many of the red brick buildings of IU Medical School. Together they have two daughters, including one who is a nurse practitioner and worked in hematology and oncology for a number of years.
“I’m an advocate. I’ve lobbied on the hill for cancer patients through the Leukemia & Lymphoma Society. There are some very poor laws effecting cancer patients out there and some bad legislation possibly coming down the pike for patients – many of those regarding cancer pricing. What does it matter if there are remarkable therapies if no one can afford them?” said Altemeyer.
In addition to helping patients and their families understand Leukemia & Lymphoma treatments, Altemeyer is part of a network through the Leukemia & Lymphoma Society that provides financial help, co-pay assistance funds, travel assistance funds and overall peer support to patients and their families.
“There are a number of organization like the American Cancer Society, Little Red Door, the Leukemia & Lymphoma Society, the Cancer Community and Susan B. Komen - that for years felt it was hard to get the attention of the medical community,” said Altemeyer, who served on a committee that eventually collaborated with various support organizations to form the Cancer Resource Center at IU Health Simon Cancer Center. “To our knowledge it’s the only collaboration of multiple cancer services coming together with a major cancer center to offer one-stop shopping through the Cancer Resource Center,” she said. This month marks the one-year anniversary of the Cancer Resource Center.
“I’m not a psychologist, a social worker, a nurse or a doctor but when you’re asked to do something to facilitate engagement with people who have cancer, you do a lot of research,” said Altemeyer. When she meets with nurses, social workers and other medical professionals at IU Health she distributes packets that are made available to patients. The packets include forms to help patients connect with a blood cancer information specialist and booklets on Leukemia, Lymphoma, Multiple Myeloma, and Non-Hodgkin Lymphoma. There is also information provided about financial assistance.
“When patients come in and get a diagnosis, they are overwhelmed. So our thought is the nurse tells them about the Leukemia & Lymphoma Society, we help them complete the paperwork, give them a packet and encourage them to take notes before the next doctor’s appointment,” said nurse Kim Card, Ambulatory Clinic Manager of IU Health Simon Cancer Center. “This is a much better way to connect them with others and help offer support as opposed to having them processing on the way home and forgetting important questions. If we don’t give them the information they need, they’ll get it from the Internet and they may not get the right information.”
Altemeyer knows about that sense of urgency.
“The first 90 days are so important. I used these materials myself. It allowed me to maximize my time with my doctor,” she said. “I would tell people who are newly diagnosed to ‘know your disease’ that’s why I feel so strongly about patient information,” said Altemeyer. “The doctor has a responsibility to give you choice but you have a responsibility to learn and make the best choices.”
The advice she shares with others was learned by walking in the shoes of those diagnosed with leukemia and by establishing a solid doctor-patient relationship.
“As a young new doctor, starting out Dr. Azar had a vision and continues to have a vision that patients are not just dealing with a disease, but that they are treated as a whole being. We’ve engaged in conversations through the years that helped me be a better advocate and perhaps, helped him expand his patient perspectives. These specialists are so remarkable at IU Health – they help you make choices about how you will spend your life and I want my family to remember me as someone who was blessed by an invitation from a doctor to serve and give back – someone who lived a meaningful life.”
-- By T.J. Banes, Associate Senior Journalist at IU Health.
Reach Banes via email at T.J. Banes or on Twitter @tjbanes.
Cancer care includes a variety of treatments, systematic therapies, surgery and clinical trials.
Clinical trials are research studies in which real people participate as volunteers. These trials help researchers develop new treatments and medications for diseases and conditions.
A cancer of the blood caused by the bone marrow producing abnormal white blood cells that crowd out healthy ones.