Thrive by IU Health

Cancer Doctor’s First Patient An Advocate For Other Patients

Cancer Doctor’s First Patient An Advocate For Other Patients

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.

Latest Stories

Filter from

January 26, 2021 Foundation Grants $603,279 to Benefit Patients, Team Members Systemwide IU Health hospitals across the state have received more than $600,000 in grants from IU... January 26, 2021 Tens of thousands of COVID vaccinations: Two people behind the scenes at one clinic They work tirelessly, coordinating the sites that administer the life-saving vaccine. H... January 22, 2021 Local Business Owner Gives to Racial Equity in Healthcare Fund If you’ve seen The Wire or Homicide: Life on the Streets, you might think you know what... January 22, 2021 Great Care: The Universal Language Imagine being ill or injured, and not being able to understand the doctors and nurses w... January 22, 2021 Mullins Supplies Much of What IU Health Needs Dennis Mullins’ career has been geared toward a year like 2020. His military logistics ... January 22, 2021 Rev Donors Support the “Trauma of Social Injustice” When IU Health Foundation realized it had to cancel its 2020 Rev Indy event due to the ... January 19, 2021 Great grandma, 85, rolls up her sleeve: ‘I want to see my Family’ She’s not accustomed to sitting still and slowing down. Yet, like many, a pandemic buil... January 18, 2021 What to Expect After COVID-19 Vaccine As the COVID-19 vaccine rollout has expanded to more Hoosiers in recent days, you may b... January 18, 2021 IU Health COVID-19 Data IU Health is committed to being a trusted source of information for the public during t... January 15, 2021 IU Health Arnett announces leadership promotions Christopher Mansfield, MD has been promoted to Associate Chief Medical Officer (ACMO) f... January 08, 2021 Chief Nursing Officer receives DNP Marilyn Riley, vice president and chief nursing officer at IU Health Frankfort, recentl... January 08, 2021 IU Health Arnett Hospital announces retirement of President Daniel Neufelder, FACHE, president of Indiana University Health Arnett and the West Cen... December 20, 2020 She’s a respiratory therapist with asthma, and she’s on the front lines Jody White didn’t have to treat COVID-positive patients at Methodist Hospital, but opti... December 18, 2020 Physicians implore their communities to take COVID vaccine when it's time IU Health infectious disease physicians from around the state feel confident in taking ... December 17, 2020 IU Health begins COVID-19 vaccines: 'Light at the end of a very long tunnel' IU Health took possession of the first COVID-19 vaccines in central Indiana on Wednesda... December 17, 2020 Coping with Grief and Loss This Holiday Season The holiday season is often a time of year in which a wide range of emotions can arise.... December 17, 2020 Behavioral health numbers up; Fighting holiday stress during a pandemic The past year has been filled with anxiety, disappointment, and heartache. Never has it... December 16, 2020 Veteran nurse: ‘I can’t tell you how hard it is to see that lonely patient in bed’ For more than two decades she’s sat at the bedside of her patients. Now, IU Health Nurs... December 15, 2020 ‘Baskets of Cheer’ boost front-line teams During a stressful day, a quick cup of coffee or snack can make a big difference, espec... December 15, 2020 New program allows patients to heal at home In April, when the impact of the pandemic began to hit home, IU Health had an idea to h... December 15, 2020 COVID-19 vaccine: Freezers ready to store; Staff ready to administer first doses It’s been a long time coming but now, a new vaccine is making its debut in the fight ag... December 14, 2020 Steps to Eating Healthy at Home It may be an understatement to say that the year 2020 has been quite the whirlwind. The... December 13, 2020 First patient who received COVID-fighting infusion: ‘Hardest part was the needle’ When she signed up to receive a new monoclonal antibody to help ward off her symptoms o... December 12, 2020 Wigs can help cancer patients feel sense of control When you combed or brushed your hair this morning, you likely didn’t think much about h... December 11, 2020 Watch: IU Health experts answer COVID-19 vaccine questions With COVID-19 vaccine approval just around the corner, IU Health experts address a numb... December 10, 2020 Generational Trauma: Breaking the Cycle of Adverse Childhood Experiences How Our Understanding of ACEs Provides Better Healing Care for Adults “The child is th... December 10, 2020 First a Riley patient; Now at 25, athlete is a patient at IU Health Simon Cancer Center At the age of three he became a patient at Riley Hospital for Children at IU Health. No... December 09, 2020 COVID-19 Vaccine: What You Need to Know With COVID-19 cases on the rise in Indiana and across the country, a ray of hope exists... December 09, 2020 IU Health vascular team’s phone app focuses on blood clots and COVID patients As health care providers piece together the impact of the deadly coronavirus, a team of... December 08, 2020 Indiana University Health Arnett welcomes new Chief Nursing Officer, Allison Shuttz, MSN, RN, NE-BC Allison Shuttz, MSN, RN, NE-BC, has been appointed Chief Nursing Officer for Indiana Un... December 08, 2020 For two years, this young mom could not speak Her 2-year-old was just a baby when Maranda Slusser stopped talking. Two more children ... December 04, 2020 Tranquility Spaces Provide a Respite For Frontline Team Members Sometimes even heroes need a break … a chance to slow down, take a breath, gather their... December 03, 2020 Hospital chaplain: From bedside compassion to hospitalized care She’s sat at the bedside of new moms and patients undergoing radiation therapy. She’s a... December 02, 2020 “I thank God I’ve come through it” As a COVID-19 “long hauler,” Sarah Hagan found help through IU Health’s Convalescing CO... December 02, 2020 She cares for patients with COVID and carries on her mother’s legacy Her mother worked for IU Health, and for two decades this nurse has followed in her foo... November 30, 2020 Calling a Code Lavender If you’ve watched a hospital-based television show, you’ve probably seen the following ... November 30, 2020 Hospital workers – Giving hearts on holidays and every day They work tirelessly every shift, every day. Most never anticipated living through a pa... November 29, 2020 He was looking for a liver giver and she delivered Wayne Brown posted on Facebook that he needed a new liver. A long-time friend saw his p... November 24, 2020 IU Health Frankfort Hospital now open The new IU Health Frankfort Hospital is open and ready to serve you. A fence around the... November 24, 2020 Nurse down 75 pounds: ‘Self-care is vital, especially during a pandemic’ As a progressive critical care nurse, Kristy Fields sees many patients treated for symp... November 23, 2020 Q4 2020 Quarterly Report: COVID-19 brings community together, while social distancing Crystal Hinson Miller, chief philanthropy officer for Indiana University Health and pre... November 23, 2020 Father of five girls gets wish with hospital bedside wedding Seven weeks ago, Matthew Rynearson was diagnosed with a neuroendocrine tumor. When he e... November 20, 2020 Transplant Gratitude Triggers $1 Million in Funding Technically, Jerome Josephs received a kidney when he underwent a transplant at IU Heal... November 19, 2020 In the Midst of a Pandemic, Three Foundation Team Members Achieve International Certification Diane Buzzell, Julie Paolillo and Kate Konzen have several new letters after their name... November 19, 2020 Rock band member chooses IU Health for testicular cancer treatment Minnesota native Ryan Keyes came to Indianapolis to play drums in a rock band. Now, he’... November 18, 2020 Offering help to go tobacco-free during COVID-19 People who are tobacco users and who vape have a higher chance of getting COVID-19. IU ... November 17, 2020 How to Stay Safe & Healthy This Holiday Season With COVID-19 cases surging across the state, it may be time to rethink your traditiona... November 17, 2020 Long-time nurse known for educating the next generation of nurses She has been at the bedside of countless patients – the sickest of the sick, and Marcia... November 15, 2020 Father Donates Kidney to Young Son: “It’s a Huge Sigh of Relief” By IU Health Senior Journalist T.J. Banes, tfender1@iuhealth.org It was in her 20th we... November 13, 2020 Double transplant patient on quest to educate young adults with diabetes Even before his first transplant, Mike Davis knew the importance of self-care for diabe... November 12, 2020 How to Cope with Holiday & COVID-19 Stress With COVID-19 cases on the rise and the holidays around the corner, you may be feeling ... November 12, 2020 Lung cancer patient, non-smoker: ‘Anyone with lungs can get cancer’ It started with a mild cough that wouldn’t go away. Now Shauna Dalton is taking meds tw... November 11, 2020 Veteran’s Day – A family legacy for IU Health doctor IU Health Dr. Kevin Rice talks about his journey to the medical field and his service i... November 10, 2020 Nurse who had COVID-19: “The positive is I can donate plasma to help others” The numbers are the highest they have been in months. COVID-19 continues to be a deadly... November 09, 2020 TCC Gives’ donated iPads help IU Health patients and families connect The isolation created by the COVID-19 pandemic has weighed heavily on everyone, but it ... November 08, 2020 ‘Hospital at home’ patient: ‘They spoiled me. I couldn’t have asked for better care’ In April, IU Health launched a program for ill COVID-19 patients that allowed them to r... November 05, 2020 New glucose management option helps COVID-19 patients Since the beginnings of the COVID-19 pandemic, healthcare professionals have learned th... November 02, 2020 Risky tumor removal threatened patient's ability to talk & swallow Daniela Gomez started experiencing severe headaches when she was 14 years old. For six ... November 01, 2020 First Altruistic Living Liver Transplant at IU Health After 10 years with an autoimmune liver disease, Matthew Prather was told it was time f... October 29, 2020 A look back at LifeLine rescue of crash victim: “A life-defining moment” It was in the early morning hours when LifeLine flight nurse Mike Collins was summoned ... October 28, 2020 First living liver recipient: Three months later and patient enjoys new life When Kelly Kinkade’s health began to decline, she turned to IU Health’s top-ranked tran... October 26, 2020 3 Healthcare Topics Every Hoosier Should Know About Before They Vote As we approach Election Day on Tuesday, Nov. 3, healthcare continues to rank high on ju... October 25, 2020 He thought he had COVID-19; Nurse practitioner suspected something else Ryan Gillen is beyond grateful. He says one special nurse who discovered his illness, i... October 22, 2020 Cancer patient, 28: ‘People say 2020 has been bad, but for me it’s a blessing’ He’s young, launching his professional career and he’s facing the challenges of a cance... October 22, 2020 For this student nurse, COVID unit has helped her grow PCA Kate Davenport: “It’s so important to meet people where they are and offer support,... October 21, 2020 Grant Expands Dementia-Support Services in Southern Indiana “It really does take a village when it comes to dementia care,” said Dayna Thompson, an... October 21, 2020 What Characteristics are the Most Important Part of a Safe & Effective Weight Loss Program? In today’s digital age, you can find weight loss plans everywhere. From diet pills that... October 20, 2020 This doctor has a reason to be a real man wearing pink Each year, the American Cancer Society raises money and awareness for breast cancer wit... October 15, 2020 Elementary teacher, 28, diagnosed with breast cancer Both her grandmothers had breast cancer, but Sarah Clark had no reason to believe her d... October 14, 2020 When Minutes Count: Know Risk Factors for Stroke Stroke is the fifth leading cause of death and is a leading cause of long-term disabili... October 14, 2020 Putting on the White Coat: Celebrating an IU School of Medicine Bicentennial Scholar Image courtesy of IU School of Medicine Where once walked a scribe, following doctors ... October 13, 2020 Infant Loss: Two Mothers Open their Arms to Those who suffer Two Nurses at IU Health Arnett both suffered the loss of their precious newborns. Their... October 12, 2020 Philanthropy Funds Rooftop Garden to Offer Patients, Loved Ones and Team Members a Breath of Fresh Air In the midst of uncertainty and stress, it’s important that all of us take a moment to ... October 12, 2020 Understand the importance of safe sleep While the prevalence of Sudden Infant Death Syndrome (SIDS) in the United States has de... October 12, 2020 Olcott’s Gift Paves Way for Nurse Navigation at the New Regional Academic Health Center Joan Olcott will be long remembered as an important figure in the Bloomington community... October 11, 2020 Breast cancer patient found lump two weeks before mammogram At the recommendation of her family physician, Kelly Kelso scheduled a mammogram. Two w... October 09, 2020 Merriman Award Honors Compassionate Team Members Statewide Five IU Health team members around the state have won the “Lynda,” the Lynda A. Merrima... October 09, 2020 From Riley to University Hospital – Patient relies on music therapy He first came to IU Health as an infant and recently when he came back as an adult, Nat... October 07, 2020 Former school bus driver fights pancreatic cancer For 25 years, Alan “Dale” Albright drove a school bus. He looked at the kids on his rou... October 06, 2020 How Could My Alcohol Use Affect My Family? “It’s just one more drink.” “I haven’t had any legal problems.” “I worked really hard t... October 06, 2020 IU Health midwifery practice invites women to “call the midwife” In a nod to the popular PBS television series “Call the Midwife,” four IU Health nurse ... October 01, 2020 Mother’s devotion: Driven to improving mental health care After years of experiencing firsthand her son’s diagnosis of mental illness, Joan Ester... September 30, 2020 LifeLine crew reunites with seriously injured teen airlifted to Methodist It was his second time to board a LifeLine helicopter and this time, Brandon Stuckwish ... September 29, 2020 How to Recognize & Prevent Heart Disease During COVID-19 Have you given much thought to your heart this year? During the COVID-19 pandemic, ma... September 29, 2020 IU Health, IPS launch career development program at Crispus Attucks Upon graduation and completion of the fellowship program, students will be guaranteed a... September 28, 2020 Grant Connects People in Rural Communities to Emergency Behavioral Care Thanks to a new grant secured by IU Health Foundation, people in rural communities in n... September 24, 2020 White Memorial helping patient move from a motorized cart to walking the fields Gene Dallinger suffers from COPD and started working with pulmonary rehab at IU Health ... September 24, 2020 From North Africa to the U.S.: Expatriate encourages community engagement A native of Algeria, Mohamed Merzoug joined IU Health’s Community Outreach and Engageme... September 24, 2020 As he retires: Transplant leader dedicated to patients and hospital community After more than a decade of serving as IU Health’s Medical Director of Kidney & Pancrea... September 23, 2020 Lab worker driven by niece’s death from sepsis Thousands of children die each year as a result of severe sepsis. Matthew “Trevor” O’He... September 22, 2020 Methodist childbirth educator looks forward to Riley move The new maternity tower at Riley will centralize all inpatient and newborn care so even... September 21, 2020 In Pursuit of Health Equity: An Evolution in Healthcare At the crossroads of storylines between the COVID-19 pandemic and summer-long protests ... September 21, 2020 Practicing Mindfulness During Times of Uncertainty The COVID-19 pandemic has underscored the fact that things in life can be out of our co... September 18, 2020 IU Health Arnett donates masks to local food banks Indiana University Health Arnett is donating masks to local food banks to help improve ... September 17, 2020 Two surgeries, one day - Father donates kidney to son When his son’s kidneys began to fail, Shannon Dobrucki did what most fathers would do –... September 16, 2020 IU Health Foundation’s Jessica Journey Receives International Industry Honor “Serving people with excellence, compassion, ethics, and positivity” has earned Jessica... September 15, 2020 Her nursing career is an extension of her life of empathy for others Melyssa Sams started her career later in life but she’s always been headed toward nursi... September 15, 2020 Hospital dietitian first came to IU Health as a pediatric patient Long before she even knew about careers in healthcare, Jennifer Golding was a patient a... September 14, 2020 Wear a Mask Because You Care … and Because It Works One of the best ways to protect yourself, your loved ones and the people in your commun... September 14, 2020 Why it’s Crucial to Get Your Flu Shot in 2020 2020 has taught us a lot of lessons. One major lesson being the importance of maintaini...