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The
WriteTrack is a personal health tracker developed specifically
for people who are undergoing chemotherapy and/or radiation
treatment for cancer. What's unique about The WriteTrack
is that the calendars, tracking charts, and information are
based on first-hand experiences and personal insights of cancer
survivors.
During the development
of The WriteTrack, people with cancer openly shared
information and tips they found most helpful in getting through
their treatment as comfortably as possible. Many people found
the days seemed to blur together and it was often hard to
remember details. Keeping personal calendars throughout treatment
helped these cancer survivors keep track of important information
and cope better with treatment.
“Once my doctors told me that I had cancer, my
mind traveled at warp speed. One second I'd be thinking about
my job… the next my wife.. the next our children.. the
next my mom and dad, brothers and sisters, other relatives…the
next life in general…the next death. When traveling
at warp speed, the content of my thoughts followed no particular
pattern. Tracking my experiences in a calendar helped me gain
some control and cope with it." Joe Wiederholt |
Joe Wiederholt, Ph.D.
University of Wisconsin Pharmacy School
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The following is the story of how The WriteTrack
was conceived by Joe Wiederholt, a pharmacy professor and cancer
patient, as told by his wife Peggy.
In the early morning hours of his 45th birthday,
September 5, 1994, Joe noticed a large amount of bright red blood
in his stools. He became alarmed and concerned, remembering that
this was the first symptom experienced by his father-in-law, who
had died of colon cancer just a few years prior. However, Joe eased
his concern by rationalizing that he was, after all, a healthy young
man who had never missed a day of work due to illness. He had taken
good care of himself. Although he carried a few extra pounds on
his 6-foot frame, he had never smoked, he exercised five days a
week, and he ate more than his daily requirements of fruit, vegetables
and fiber. Nonetheless, recalling his father-in-law, he sought immediate
medical care, underwent diagnostic studies, and was shocked to discover
that he too had cancer of the colon.
For the first time in his adult life, Joe was hospitalized
and underwent surgery to remove the cancerous tumor. While recovering
from surgery, the doctors and nurses told him to describe his level
of pain using a "pain management scale" from 1 to 10,
with the 9 and 10 labeled as "severe." Joe was instructed
to pick the number that best described his level of pain, thus allowing
his medical team to give him medications to make him more comfortable.
The teacher in Joe encouraged him to look at every experience in
life as an opportunity to learn something new. He was interested
in this simple scale and how well it allowed him, as a patient,
to communicate his needs to his doctors and nurses. It allowed them
to work as a team in managing his pain. He made a mental note that
there would certainly be new lessons that he could teach pharmacy
students based on this experience. |
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Soon after surgery, Joe prepared
for chemotherapy. He had read all of the leaflets that he
had been given describing the drug treatments, how they were
given, common side effects, less common side effects, and
special precautions. He wondered how all of this would alter
his lifestyle. Joe had such a passion for life. He wanted
to be able to spend quality time with his loving family -
canoeing, hiking, biking, fishing, doing all the things that
we enjoyed together. He couldn't imagine not being able to teach at the University of Wisconsin Pharmacy School.
When the chemotherapy treatments
began, the doctors and nurses told Joe that they would inform
him if his blood counts were too low, putting him at risk
for infection. They instructed him to monitor the more common
side effects, such as nausea, loss of appetite, mouth sores,
and diarrhea. If they should become too severe, he would be
given medications to treat them. However, no one told Joe
how to monitor and document these side effects, so he decided
to come up with a system of his own. So much had happened
in a short period of time. His world had been turned upside
down. It was time to take some control over his life. Recalling
the "pain management scale" from the hospital, Joe
designed a one-page form to monitor and record his side effects
using a similar 10-point scale. On it he recorded the name
of the medications he was taking and the date and time he
took each. He then recorded diary entries describing side effects, noting their frequency, severity, and how they varied
form day to day. He found that this simple diary was very
beneficial. Patterns developed such that he would know what
to expect from the chemotherapy. He would take his diary with
him to his appointments with his oncologist and communicate
his side effect experiences so that his doctor could understand
and help better manage the symptoms. In addition, Joe found
that he experienced side effects that were less common or
not previously reported, and they greatly diminished his quality
of life. His diary allowed him to record and track these as
well and report them to his physician. As therapy progressed,
Joe became an active and responsible partner in his care.
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Joe fishing on the Brule River |
Joe and Peggy with their children, Mekel
and Jade
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Tracking his side effects allowed Joe and our family to
make decisions. It helped him decide when to schedule chemotherapy..
This was the most important quality of life decision for
Joe. He could schedule family activities when he predicted
fewer side effects. He could even continue to teach on the
better days. As Joe said, "The side effects monitoring
system allowed me to plan my weekly activities. I felt I
was IN CONTROL in managing my disease and therapy. You just
don't know what that means to have some feeling of control
of your life when you're on chemotherapy."
The teacher in Joe soon surfaced again.
He eagerly began sharing his experiences as a cancer patient
with colleagues at national conferences and with pharmacy
students in the classroom, emphasizing the importance of
monitoring side effects and improving communication between
health care professionals and patients, being a real patient
advocate. Joe was also convinced that a side effect tracking
system like the one he had used for himself could help other
chemotherapy patients. The very thought of it energized
and excited him. His enthusiasm soon became contagious.
He contacted a former graduate student who was in the Oncology
Division of Bristol-Meyers Squibb Company and shared his
idea. The idea was quickly embraced and HealthEd ( formerly
Doctors + Designers ), a company with expertise in developing
patient-centered health education materials, was soon involved.
The project also received the support and approval of Cancer
Care, Inc. Working as a team, they were able to take Joe's
one-page side effect monitoring diary and develop it into
The WriteTrack. |
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a year of chemotherapy, Joe's cancer was in remission until
the fall of 1999, when he was diagnosed with metastatic disease.
He used The WriteTrack to monitor the side effects of
chemotherapy regimens and eventually radiation therapy as well.
He gained much satisfaction from knowing that perhaps he played
a role in helping other cancer patients cope with their disease.
When interviewed by a local television station after being honored
with a national teaching award, the reporter commented on how
Joe's experience with cancer seemed to have some positive effects
on his life. Joe smiled broadly and said, "The neatest
thing I had happen when I started therapy the second time was…I
sat in the clinic, people didn't know who I was, and a patient
pulled out The WriteTrack. That was…WOW!"
Joe's life ended on May 28,
2001; however his legacy of helping patients through his research
and teaching continues. Research based on The WriteTrack
has been presented at national and international scientific
conferences and has been published in scientific journals.
Joe's dream was to make
The WriteTrack available to any cancer patient who wishes
to use it. Since it was first published in 1997, over 150,000
copies have been printed. This newly revised version incorporates
helpful suggestions made by cancer patients and health care
providers who have used previous editions. |
Joe addressing the American Association
of Colleges of Pharmacy
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I
have experienced using The WriteTrack both as an oncology
nurse and as the wife of a cancer patient. In addition, when
Joe was undergoing cancer treatments, one of his caregivers
was my mother, Dorothy Feeley. He lovingly called her “Nurse
#2.” Diagnosed with lung cancer in May of 2005, Nurse
#2 has reminded our family yet again of the value of this
book on a very personal level. It is our hope that The
WriteTrack will help you on your cancer journey.
Peggy looking at The WriteTrack with her mother
and cancer patient, Dorothy Feeley.
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