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.
Living On The Other Side Of Medicine
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.
Dr. Lynne Carr Columbus is a Board Certified Pain Management physician. Dr. Columbus is the president of Gulf Coast Pain Management, a multidisciplinary pain center in Palm Harbor. Dr. Columbus is an Alternate Trustee for FOMA District 5. In 2005, Dr. Columbus was nominated for the 16th Annual Florida Medical Business News Golden Stethoscope Awards in the category of Best Women’s Practice. Dr. Columbus specializes in treating back pain, neck pain, headache pain and many other pain syndromes.