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A Personal
Battle:
by Lynne Carr Columbus, DO, President
Gulf Coast Pain Management
FOMA Member
I
have always been a very athletic and active person. I have had to endure
quite a bit of pain in conjunction with athletic injuries. Having been a
nationally ranked equestrian in the past, I have had horses fall on me,
step on me, kick me, all of which never felt too great, but I basically
sucked it up and jumped right back up on the horse. Last March, I began
to experience right hip pain, which I just attributed to a hip bursitis
related to my jogging, and back pain, which I attributed to strain from
lifting weights. I began to have dyspepsia and right sided mid-scapular
pain and right shoulder pain. I underwent a GI workup, which was
indicative of gallbladder disease. I subsequently underwent a
cholecystectomy, which resolved my dyspepsia and some of my right
scapular and shoulder pain.
Spring break approached in April
and the kids and I went on a well-anticipated trip to Hawaii. We enjoyed
the vibrant smells and beautiful weather Maui had to offer. Our hotel
room overlooked the beautiful sunken volcano, Molokini Crater. We
surfed, rode horses, biked, snorkeled, and enjoyed all of the usual
Hawaii adventures, all of which I tolerated with moderate pain in my
right hip and my mid-scapular area. But when the kids and I fell
exhausted in our beds at night, I couldn’t sleep because of severe back
pain. My pain was so intense; I couldn’t find any comfortable position.
I remember propping my pillows up in the hotel room and just listening
to the whales’ song at night outside of the hotel room, a very soothing
sound, but not enough to soothe my pain and allow me to sleep. I watched
the kids sleeping soundly and was envious of their peaceful slumber. I
began to dread nighttime and this painful curse.
I contacted my surgeon, thinking that I might be suffering a
complication from my cholecystectomy. He ordered a CT scan of my chest
and abdomen, which I had performed the day that I returned from my
Hawaiian vacation. I reviewed the films with the radiologist, and my
heart fell into the pit of my stomach. The films revealed multiple
pulmonary nodules. I looked over the radiologist’s shoulder and stood
there speechless. I didn’t know what to say, and neither did he. He
looked up at me and said, "Sorry, Lynne, this doesn’t look pretty." I
went to my car and sat there stunned for a minute, not knowing where to
go or whom to call. I scheduled a PET scan first thing the next morning.
That was one of the most uncomfortable procedures I have ever had to
endure. I was not taking any type of pain medications and lying still on
my back for the amount of time required for the scan was nothing short
of torture. I laid there and just thought about my kids. I utilized
every breathing technique I had ever learned to try to control my pain.
When the study was over, I remember having a lot of difficulty bringing
my arms down and standing. I felt like I was floating and in a different
world. I went to the changing room and put my clothes on. I walked
around the corner to the radiologist’s reading room. My parents met me
there and we looked at the films with the radiologist, Manny Rose, MD.
He spent a lot of time reviewing them with us and was in awe of the
unexpected results. I had two tumors in my spine and a tumor in my right
femoral head, the obvious sources of my excruciating pain. I stood there
stunned. I looked over at my father and saw his eyes well up with tears.
All I could think of to say was, ‘I guess I’m not crazy, there really is
a reason for all of this pain."
We went out to the car. I let my mother drive us home. My back pain was
too severe from lying down during the procedure, to drive home. The only
thoughts that I had were that this must be metastatic disease, most
likely breast, since my grandmother had died from metastatic breast
cancer. I didn’t really think about myself. I was angry that my children
were going to lose their mother at such a young age. It didn’t seem
fair. They are such wonderful and loving children. They didn’t deserve
to go through this
type of trauma. That thought gave me the strength and inspiration to
begin my battle with whatever was going on in my body.
I realized that I had a lot of friends and resources in the medical
community and that now was the time to utilize all of these resources. I
placed a phone call to Andy Hano, DO, a family friend and oncologist. I
remember talking to him while he was at a Tampa Bay Lightning game. He
was having a great deal of difficulty hearing what I had to say because
of the noise from the enthusiastic crowd surrounding him. I told him
that I didn’t know what was going on, but that I had a feeling I was
going to be in need of his services. He graciously agreed to see me
right away. That same night, I called my friend, Frank Vrionis, MD, a
very reputable neurosurgeon at Moffitt Cancer Center, to perform a
biopsy of the thoracic tumor. I began to round up the troops. I used
every contact that I knew to get procedures scheduled in a timely
fashion. I was anxious to find out what was inside of me and move
forward with battling this insidious disease.
I had my biopsy performed and received a phone call from Frank two weeks
later. I recall him saying, "Lynne, I always knew that you were a kid at
heart. Your biopsy is positive for eosinophilic granuloma. Are you
familiar with that disease?" I thought hard and grabbed a memory from
medical school, recalling that eosinophilic granuloma was a form of
histiocytosis, a very rare disease that occurred primarily in children.
He reassuringly added, "I have spoken to many people here at Moffitt and
it seems to be a disease that responds to chemo with a good prognosis.
Unfortunately, it is so rare that we don’t have experience here at
Moffitt treating it."
I went into overdrive researching the disease on the Internet in
conjunction with Andy Hano and many of my physician friends. Frank also
had his residents and fellows at Moffitt research the disease. All of
the research and adult experience seemed to lead to one man, Kenneth
McClain, MD, a pediatric oncologist at Texas Children’s Cancer Center in
Houston, Texas. I called Dr. McClain and expected to be speaking to a
physician with an inflated ego due to his notoriety and acclaim from his
research and development of the protocols used to treat LCH. Instead, I
was speaking to a delightful, pleasant Texan whose enthusiasm for
finding another patient to treat and help cure, was obvious. So, I
hopped on a "Life Guard" flight piloted by a very dear friend and
supporter of Sun Coast Hospital, and began one of many journeys to
follow to Houston. I walked into the waiting room of Texas Children’s
Cancer Center and was in awe of what lie before me. The facility was
immaculate. But what really caught my eye were the hairless, cushingoid
children running around the waiting area playing with the toys,
computers, and little animal chairs as if they didn’t have a care in the
world. Children are so resilient. They became an immediate source of
inspiration. I thought to myself, if these kids can do it, so can I.
My jaunt to Houston was the beginning of my treatment for this new
disease, which is now my label, LCH. My surgeon friend, Gary Dworkin,
MD, called his office and scheduled a port placement that week. Once I
had my port in place, I was good to go. I began my new adventure and
entered the world of chemo.
I started my chemo on a weekly basis. It’s amazing how you become a part
of the oncology family. I feel like Dr. Hano’s chemo suite is like a
second home. I go there with enthusiasm for my "magic juice" in
anticipation of it destroying these nasty cells that are trying to take
over my body with their tumor formation. My hip and T3, T4 tumors have
definitely improved with my treatments. In late October, I felt
excruciating pain in my skull. It felt like I had an ice pick stabbing
my left parietal area. The pain was so intense, I wanted to scream. Not
wanting to upset my children by letting them see me in distress, I got
in the car and drove to my office and injected the area with local
anesthetic and a small dose of steroid, which provided me with moderate
relief. To my dismay, a skull lesion had broken through my current chemo
treatment, so, Dr. McClain added some oral chemo agents to my current
drug regimen. I seemed to be doing well and hoped to be done with all of
my treatment by June. Three weeks ago I began to feel severe pain in my
mid back, and unfortunately, I have developed another lesion at T8. I
met with Dr. McClain last week and I will be starting a new chemo
regimen. This new regimen will be more physically draining and bottom
out my immune system, so, I am preparing to go into hibernation for 6
months and become "bubble girl" (from Seinfeld’s bubble boy episode). I
feel that I am in the home stretch with my treatment. I am confident
that I will be able to force this insidious disease into remission and
go back to what I love most, seeing patients and treating them for their
painful conditions with positive, effective results. I think that
becoming a patient and experiencing what it is like to have insurance
issues, long waits in waiting rooms, spending hours in imaging
facilities, being stuck multiple times for lab draws, sitting next to
chemo patients as they struggle to stay awake and converse with their
companions while battling off their nausea; has definitely increased my
awareness of the downside of health care.
But I have also been made aware of the very positive side of healthcare
by experiencing the support that is available from our society and the
physician community. I have a great support system from my family,
office staff, patients, and very dear boyfriend, Paul Vitale. I am truly
grateful for all of the support and concern that the medical community
has given me.
I encourage you to utilize these resources that FOMA makes available to
you should you experience a similar situation. They are the rock of our
osteopathic profession in Florida, and will help make it easier for you
should you have to live life on the other side of the medicine.
Histiocytosis
Association of America
For more
information regarding Langerhan’s histiocytosis,
visit www.histio.org.
Dr.
Lynne Carr
Columbus, D.O.
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