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HealthTree Patient Spotlight: Kathy Kupka
Kathy Kupka is a portrait photographer, a cancer survivor of multiple myeloma for 17 years, and the author of “Cancer is Ruff, But There is Treatment,” a photo book that has brought laughter and light to many patients in treatment. This past week, Kathy found HealthTree, a place to share her story and bring a message of hope to other myeloma patients.
Kathy's Story
Kathy had always worked as a full-time secretary, and began taking photography classes at night. She pursued her passion behind the camera and impressively grew her clientele. By September of 2000, she was able to make a career of photography. The following November on the way home from a weekend in New York, she became so sick that she ended up in the hospital with pneumonia for nine days. During her hospital stay, Kathy noticed an intense breathing pain and thought she may have broken a rib, but the doctors explained it was simply a symptom of the pneumonia.
She was able to rest from work during recovery, but a few months later in January of 2001, she started to experience back pains, which never happened to her before. Her doctor said she needed to stretch more before exercising. A week later, she picked up her little 17 pound dog, and felt a horrible pain in her collarbone. Initially she thought it was another muscle pulled--but she quickly heard it snap.
She returned her doctor, who again told her to stretch more. Kathy continued to search for answers. Her sister sent recommended an orthopedic surgeon. After examination, he found lesions and sent Kathy to an oncologist in Virginia. The oncologist ran a series of tests (including a bone marrow biopsy)--which resulted in a multiple myeloma diagnosis.
Kathy, like most, had never heard of the rare cancer before, but was told by the doctor that there was “no cure, but there is treatment.” Kathy responded with a proactive attitude and wanted to start treatment immediately. The doctor talked about centers in DC or Baltimore, but Kathy wisely asked, “Where are the experts?” She was directed to a research center in Little Rock, Arkansas.
Although there was significant travel involved, Kathy was not deterred. She met her doctor, Dr. Guido Tricot at UAMS. Kathy stayed for a week of tests and was diagnosed with IgGg Lambda Stage 3-A in May of 2001.
Do you know what kind of multiple myeloma you have? Read why it matters.
The doctors also concluded that indeed, she had broken her collarbone and several ribs, as she suspected earlier. Kathy returned to Virginia to receive chemotherapy for 3 months. She had her first transplant in November of 2001, and she went home in December in complete remission. As was protocol, she still received the second transplant in February 2002.
After her transplants, she continued with maintenance therapy (chemotherapy and steroids) for two years. Since the end of her therapy, she has received Aredia every six months. As of March 29, 2019, Kathy continues in complete remission. Next month she will return to Little Rock for her regular check up and we send her our best wishes. The Myeloma Crowd had an opportunity to ask Kathy about her experiences.
What Did You Want to Know When You Were First Diagnosed?
“Well,” Kathy said, “I was wondering how I got here, and ultimately none of the doctors knew. But really my question right away was, 'Where is the best place to get treatment?'”
“I was fortunate that my doctors here in Virginia knew Dr. Tricot because they worked together in Baltimore years ago. They corresponded frequently about me.”
HealthTree can help find a Myeloma Specialist near you.
What Other Factors Contributed to Your Success?
“I was fortunate,” she responded, “that I have a big family and friends that were able to take turns with me while I was out there in Little Rock so my husband could continue working. I traveled [about a three hour flight] to Little Rock Arkansas, and when I got to the facility, it was comforting because everyone else there has multiple myeloma, a disease I had never heard of. It’s just comforting to be around other people who have the same thing.”
“When I got there, they had reasonably rated apartments for those who are being treated there, so all my treatment was out-patient. So, when I was getting chemo or anything, I took my chemo bag with me. They gave us medication in case you had a stroke or fever. And then when I got my transplants, that meant going back to the hospital/clinic, staying there for the hours it took, and returning to the apartment. That included a bit of travel and is why I always had somebody with me.”
“When I saw Jenny and heard she was being treated in Salt Lake City, I wondered if she had been treated by Dr. Tricot. Dr. Tricot was in Little Rock for six years and then I followed him to Salt Lake City. He was there for four years and then I followed him to Iowa. Then he was there about four years before he retired. When he moved, I would go to wherever he was for check-ups. I continued to see Dr. Tricot because he was my doctor, he was the one who I say saved my life. I mean, all the doctors at these centers consult with each other, but I wanted to see him, so I got to see a little of the world in the process. When he retired, I went back to Little Rock because I love the people there. I photographed a lot of their dogs when I was feeling better.”
Riding the Rollercoaster
“One time, I’ll never forget. I saw Dr. Tricot after all my treatment was done and I was going to go on a family vacation at this amusement park that had the best roller coasters. So, I asked Dr. Tricot if my bones were strong enough for me to go on the rollercoaster. He said, 'Yes, they are!' So I went on the rollercoaster and I screamed the whole time, and that night I was at campsite thinking I had broken a bone or a rib. So we went home and went to the doctor and it turned out that I had pneumonia — and that’s painful. And my husband swears that because I was screaming so badly, I got sick. [Laughs] I’ll never go on another roller coaster I swear.
"But when I do talk to other people who want know about this, first of all, I try not to scare them about the bone marrow biopsies, and I just will try to tell them what I went through and like my doctor said, there is treatment.”
Kathy has had her ups and downs and was able to use the work she loved as her focus and great therapy.
“...My husband ended up getting Hodgkin's Lymphoma, and he passed away in 2012. He was there to help me from the beginning. He is so smart and he had all the questions to ask the doctors. And then my daughter actually passed away in 2014, and I really dove deeply into my photography, and then working on my book has been great therapy all around. And with my book I have so many great testimonials, that I know from hearing other people that it makes them laugh, even when they’re feeling rotten.”
Why I Want to Share My Story in HealthTree
“I cannot believe that none of my friends told me that HealthTree was on the Today Show. I usually watch the Today Show! I watched the replay and that’s when I got on and started trying to fill out my information. I really wanted to share my story, and am continuing to complete my full profile now. Even though I am now in remission, I know sharing my story can provide information and give people hope.”
At HealthTree we hope to offer tools to help patients obtain their best possible care. A key feature in HealthTree is that with a complete patient profile, myeloma patients can see their individual expert-preferred lines of treatment — personalized according to the information they provided — and share their results with healthcare providers. No matter where they are treated, patients can use their health information to be better informed about the best possible treatment approach, and discuss it with their doctors. They can be an active participant in the direction of their treatment. The results generated on the HealthTree platform are based on input from a group of top multiple myeloma specialists in the nation.
If you need additional support using the HealthTree online tools, we are currently developing a Myeloma Coach program. If you would like to either become a coach or register to find one, please sign up here.
Kathy’s book, sample pages and her greeting cards are available on Kathy’s website cancerisruff.com. Share your myeloma story online with HealthTree or call 1-800-709-1113 to share it with one of our representatives.
Kathy Kupka is a portrait photographer, a cancer survivor of multiple myeloma for 17 years, and the author of “Cancer is Ruff, But There is Treatment,” a photo book that has brought laughter and light to many patients in treatment. This past week, Kathy found HealthTree, a place to share her story and bring a message of hope to other myeloma patients.
Kathy's Story
Kathy had always worked as a full-time secretary, and began taking photography classes at night. She pursued her passion behind the camera and impressively grew her clientele. By September of 2000, she was able to make a career of photography. The following November on the way home from a weekend in New York, she became so sick that she ended up in the hospital with pneumonia for nine days. During her hospital stay, Kathy noticed an intense breathing pain and thought she may have broken a rib, but the doctors explained it was simply a symptom of the pneumonia.
She was able to rest from work during recovery, but a few months later in January of 2001, she started to experience back pains, which never happened to her before. Her doctor said she needed to stretch more before exercising. A week later, she picked up her little 17 pound dog, and felt a horrible pain in her collarbone. Initially she thought it was another muscle pulled--but she quickly heard it snap.
She returned her doctor, who again told her to stretch more. Kathy continued to search for answers. Her sister sent recommended an orthopedic surgeon. After examination, he found lesions and sent Kathy to an oncologist in Virginia. The oncologist ran a series of tests (including a bone marrow biopsy)--which resulted in a multiple myeloma diagnosis.
Kathy, like most, had never heard of the rare cancer before, but was told by the doctor that there was “no cure, but there is treatment.” Kathy responded with a proactive attitude and wanted to start treatment immediately. The doctor talked about centers in DC or Baltimore, but Kathy wisely asked, “Where are the experts?” She was directed to a research center in Little Rock, Arkansas.
Although there was significant travel involved, Kathy was not deterred. She met her doctor, Dr. Guido Tricot at UAMS. Kathy stayed for a week of tests and was diagnosed with IgGg Lambda Stage 3-A in May of 2001.
Do you know what kind of multiple myeloma you have? Read why it matters.
The doctors also concluded that indeed, she had broken her collarbone and several ribs, as she suspected earlier. Kathy returned to Virginia to receive chemotherapy for 3 months. She had her first transplant in November of 2001, and she went home in December in complete remission. As was protocol, she still received the second transplant in February 2002.
After her transplants, she continued with maintenance therapy (chemotherapy and steroids) for two years. Since the end of her therapy, she has received Aredia every six months. As of March 29, 2019, Kathy continues in complete remission. Next month she will return to Little Rock for her regular check up and we send her our best wishes. The Myeloma Crowd had an opportunity to ask Kathy about her experiences.
What Did You Want to Know When You Were First Diagnosed?
“Well,” Kathy said, “I was wondering how I got here, and ultimately none of the doctors knew. But really my question right away was, 'Where is the best place to get treatment?'”
“I was fortunate that my doctors here in Virginia knew Dr. Tricot because they worked together in Baltimore years ago. They corresponded frequently about me.”
HealthTree can help find a Myeloma Specialist near you.
What Other Factors Contributed to Your Success?
“I was fortunate,” she responded, “that I have a big family and friends that were able to take turns with me while I was out there in Little Rock so my husband could continue working. I traveled [about a three hour flight] to Little Rock Arkansas, and when I got to the facility, it was comforting because everyone else there has multiple myeloma, a disease I had never heard of. It’s just comforting to be around other people who have the same thing.”
“When I got there, they had reasonably rated apartments for those who are being treated there, so all my treatment was out-patient. So, when I was getting chemo or anything, I took my chemo bag with me. They gave us medication in case you had a stroke or fever. And then when I got my transplants, that meant going back to the hospital/clinic, staying there for the hours it took, and returning to the apartment. That included a bit of travel and is why I always had somebody with me.”
“When I saw Jenny and heard she was being treated in Salt Lake City, I wondered if she had been treated by Dr. Tricot. Dr. Tricot was in Little Rock for six years and then I followed him to Salt Lake City. He was there for four years and then I followed him to Iowa. Then he was there about four years before he retired. When he moved, I would go to wherever he was for check-ups. I continued to see Dr. Tricot because he was my doctor, he was the one who I say saved my life. I mean, all the doctors at these centers consult with each other, but I wanted to see him, so I got to see a little of the world in the process. When he retired, I went back to Little Rock because I love the people there. I photographed a lot of their dogs when I was feeling better.”
Riding the Rollercoaster
“One time, I’ll never forget. I saw Dr. Tricot after all my treatment was done and I was going to go on a family vacation at this amusement park that had the best roller coasters. So, I asked Dr. Tricot if my bones were strong enough for me to go on the rollercoaster. He said, 'Yes, they are!' So I went on the rollercoaster and I screamed the whole time, and that night I was at campsite thinking I had broken a bone or a rib. So we went home and went to the doctor and it turned out that I had pneumonia — and that’s painful. And my husband swears that because I was screaming so badly, I got sick. [Laughs] I’ll never go on another roller coaster I swear.
"But when I do talk to other people who want know about this, first of all, I try not to scare them about the bone marrow biopsies, and I just will try to tell them what I went through and like my doctor said, there is treatment.”
Kathy has had her ups and downs and was able to use the work she loved as her focus and great therapy.
“...My husband ended up getting Hodgkin's Lymphoma, and he passed away in 2012. He was there to help me from the beginning. He is so smart and he had all the questions to ask the doctors. And then my daughter actually passed away in 2014, and I really dove deeply into my photography, and then working on my book has been great therapy all around. And with my book I have so many great testimonials, that I know from hearing other people that it makes them laugh, even when they’re feeling rotten.”
Why I Want to Share My Story in HealthTree
“I cannot believe that none of my friends told me that HealthTree was on the Today Show. I usually watch the Today Show! I watched the replay and that’s when I got on and started trying to fill out my information. I really wanted to share my story, and am continuing to complete my full profile now. Even though I am now in remission, I know sharing my story can provide information and give people hope.”
At HealthTree we hope to offer tools to help patients obtain their best possible care. A key feature in HealthTree is that with a complete patient profile, myeloma patients can see their individual expert-preferred lines of treatment — personalized according to the information they provided — and share their results with healthcare providers. No matter where they are treated, patients can use their health information to be better informed about the best possible treatment approach, and discuss it with their doctors. They can be an active participant in the direction of their treatment. The results generated on the HealthTree platform are based on input from a group of top multiple myeloma specialists in the nation.
If you need additional support using the HealthTree online tools, we are currently developing a Myeloma Coach program. If you would like to either become a coach or register to find one, please sign up here.
Kathy’s book, sample pages and her greeting cards are available on Kathy’s website cancerisruff.com. Share your myeloma story online with HealthTree or call 1-800-709-1113 to share it with one of our representatives.
about the author
Erika Johnson
Myeloma Crowd Editorial Contributor, Nursing student, and cancer advocate.
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