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History of my battle with LMS

October 2007 - Removal of Neck / Tongue Tumors Surgery was done by Dr. Carlson at U.T. Medical Center on October 24, 2007. In a 3 1/2 hour procedure, he removed the giant neck (submandibular gland) tumor, along with a salivary gland, as well as two tumors on the right side of my tongue: one on the front end of my tongue, and a growing, mushroom-shaped one on the top of my tongue. September 2007 - PET/CT Scan PET/CT scan shows no significant increase in overall tumors. We are still dealing with extensive lung and scalp mets, mets to left arm, right arm, neck and mouth, and left abdominal wall, as well as many small "hot spots". August 2007 - Spinal Tumor Surgery On August 24, Dr. Cheng at Vanderbilt repaired my spine in an 8 hour surgery by 1: repeating the original laminectomy, 2: fusion five thoracic vertebrae (including the three that had been shattered by the cancer), and 3: removing the tumors in the muscles adjoining my spine, including one wrapped around my rib and pressing on my lung. After a three (amazing, huh?) day stay in the hospital, I returned home to recuperate -- only to be slammed by a vomiting stomach bug and low red blood cell counts. Followup appointment at Vanderbilt on October 3rd showed successful spinal fusion and removal of tumors. July 2007 - Spinal Tumor Is Back with a Vengeance Pain that was eerily familiar led me to request an MRI on July 19. The MRI, along with CT scans on July 20, confirmed my greatest fear: the spinal tumor has returned, and this time the damage is much more extensive. Three vertebrae have been destroyed, and the cancer has grown through the spine and "spills" out on either side into the muscles around it. The surgeon who did my previous spinal surgery (3/2006) said that he could not help us, so we consulted with Dr. Cheng at Vanderbilt on August 1. He expressed the seriousness of the situation, but thankfully he also agreed to do the surgery on August 24. This time the surgery is absolutely necessary to prevent complete collapse of my spinal column, which would mean permanent paralysis and could also cause catastrophic internal damage. We also consulted with a head/neck surgeon on July 30 about my submandibular tumor. He does believe that it is surgically removable, but it will have to take a back seat, of course, to the spinal tumor treatment. May 2007 - Lung Mets Growing - Radiation Treatments On May 7th, while returning from Nashville for my first surgical followup with Dr. H, I was stricken with a new and terrible pain over my right shoulder blade. Tests revealed that several of the lung tumors have grown. Two are troublesome: one is pressing on the main right pulmonary artery, the other on the back of my heart. I began a set of 10 radiation treatments on 5/14. X-rays (to check for pneumonia) on 5/18 revealed that there is already some shrinkage of the two tumors being radiated. CT scans will not be done until 1 month after the completion of radiation (because it keeps working after the treatments are completed.) April 2007 - Surgery Scheduled at Vanderbilt University Hospital Dr. H, an orthopedic oncologist at Vanderbilt, will be performing my surgery on 4/20 to replace most or all of my diseased right femur with a metal prosthesis called a "megaprosthesis". If the lower part of the femur is healthy and cancer-free, she will leave it in place and cement the metal piece into it. If there is damage (possibly from the intramedullary rod) or ANY cancer cells, she will remove the entire femur. This would require an artificial knee joint, too. The hip itself seems to be intact, so I shouldn't need the allograft. It will be reinforced with a metal "cup" to hold the metal femur ball. Pre-op tests were started on 4/3, the day of my initial consultation with Dr. Holt. Tests that day included chest x-rays, x-rays or some kind of bone scan on both legs, a test to determine the length of both leg bones, and CT scans with and without contrast dye. The remainder of the pre-op tests were completed on 4/13. These included a blood pressure/weight check, an EKG, a thorough questionnaire by their nurse practitioner, blood work, and a urinalysis. As far as we know, I am now ready for the big day: Friday, April 20th at 8 a.m. (CT). March 2007 - Bone Scan Results, Search for Orthopedic Surgeon The bone scan showed no further bone involvement other than the severely damaged right upper femur and hip bone. Our local orthopedic surgeon can't do the surgery, because it will be so complex -- involving metal prostheses and an allograft (donated cadaver bone); so he referred us to a doctor in Knoxville, who also declined to take my case. We have been referred instead to an orthopedic oncologist at Vanderbilt Ingram Cancer Center in Nashville. We will see her on April 3rd for a consultation to see if she will do the surgery. February 2007 - Fractured Hip Sigh ... it couldn't last, could it? An x-ray on Valentine's Day revealed the horrible truth: the cancer from my femur bone has migrated up into my right hip, destroying the upper femur bone and part of the pelvis. What's left of the "neck" of the femur (just below the ball that joins the hip bone) is fractured. We have scheduled a bone scan for 3/5 to see if there is any other bone involvement. January 2007 - Time for CT Scans! Now that I have completed five rounds of Gem/Tax (as of 1/10/07), it is time for CT scans of my lungs, abdomen, and pelvis to see if it's working. These will be done on 1/17/2007. UPDATE - 1/30/2007: Good news! It appears that the chemo is working! The CT scans showed stability of current tumors, no new growth, and slight shrinkage of the lung tumors! Our plan now is to complete two more cycles and then take a break, probably until my next CT scans are due in six months. I started cycle 6 on 1/23, and was supposed to have the second half of the cycle this week. Unfortunately, however, I have been sidelined by an infection (cellulitis) in my lower right leg. To avoid a stay in the hospital, I am receiving IV antibiotics (Rocephin) here at home for seven days. Today was my fifth dose. We will try chemo again on Monday, 2/5. I am also scheduled for lung tests when I see my pulmonologist on 2/7. In spite of the setback, we are excited about the news from the CT scan! September 2006 - February 2007 - Chemotherapy After consultation between doctors, we decided to go with a combo of Gemzar and Taxotere. Each cycle is three weeks long: Week 1 - Gemzar only, Week 2 - Gemzar and Taxotere, Week 3 - Off / Shots if needed. The plan is to do four cycles and then see if there's shrinkage/stability. So far, I have only been able to have the Gemzar twice. My white blood cell counts dropped quickly, and I am terribly nauseous starting about three days after chemo and lasting for several days. It's horrible. My hair has thinned, but not come out yet. On October 2nd, we will try to do Gemzar AND Taxotere. January - May 2006 - Physical Therapy With the help of the BEST physical therapist who came to our house three times per week, I slowly regained use of my leg muscles. When the feeling slowly returned, my muscles were weak and wobbly. At first I was so weak that I could barely sit up. Kelly told me "any movement is good movement". She helped me find the courage to pull myself and stand at the sink, hanging on for dear life. I used hand weights and ankle weights and a Theraband. Finally, in late April, I walked again. I was so scared that I sat there and cried before I tried it. I had this fear that my legs would bend both ways at the knee, like rubber. There's no way to describe how much those first steps meant to me. Thank you, Kelly! Thank You, God! My in-home PT ended in May, right about the time that school ended. March 2006 - Surgery for spinal tumor After some confusion (on our part - the radiation doc spoke a little too upbeat-ly, and we did the victory dance), we learned that radiation did NOT kill the spinal tumor. I was sent to Dr. Meric at Fort Sanders. He told me I had a 30% chance of permanent paralysis with surgery, a 100% chance without surgery. The surgery was delicate and risky. Thankfully, everything went smoothly. Blood clots were found in both legs and filters were placed to keep the clots for moving to vital organs. Five days after surgery, I asked Dr. Meric to either order me some PT or send me home, where at least I would be peeling potatoes or folding towels or something. The PT guy said, "I don't know what you've done to make your doctor mad, but he told us to come three times a day and give you a workout." :-) I have a confession. Two weeks after surgery I was transferred to Patricia Neal Rehab Center, where they wanted me to stay at least two weeks. I was hysterically homesick, and left on the second day with a "very reluctant discharge" from the doctor there. When I came home in the ambulance, the girl riding in back with me said I was the happiest person they'd ever had in the back of their ambulance. It's probably true. They could have strapped me to the top of the thing and I wouldn't have cared as long as they were bringing me home. I heal better at home, and I missed the kids terribly, and all of that running back and forth was so tiresome for Don. December 2005 - January 2006 - Radiation on spinal tumor Radiation was started while I was still in the hospital on the spinal tumor. I can't remember exactly how many treatments I had - 10 or 12, I think. However, I certainly remember the bumpy trip to and from the hospital by ambulance every day and the violent vomiting during the treatments. At the end of the radiation, in mid-January, I was bedridden, had virtually no feeling in my lower body, no bowel or bladder control, and was weak as a baby. This was definitely my low point. In the end, I spent more than four months in a hospital bed in our family room , manning the family's activities from my "control base" on the bed. December 2005 - Spinal tumor!!!!! On the morning after Christmas, I got up on my walker to hobble to the potty on my walker. Before I could make the four steps, my legs curled out from under me. After a week in the hospital, the diagnosis was a spinal tumor, with a 20% chance of recovering the feeling in my lower legs. On a side note, I had been begging my Knoxville oncologist for help with worsening back pain and sporadic loss of bowel control for nearly three months. He told me to take my pain medication and keep my next appointment -- in January. October 2005 - Radiation on left arm Well, the doctors thought that maybe I didn't need any more surgeries for a while. We opted for radiation on a large tumor on my upper left arm that pressing against the bone and causing shooting pain to go down my arm. I insisted that we do something, because I can't risk another limb. I need that arm to be able to use my walker. I had 20 treatments, driving to Knoxville every day while gas was over $3 per gallon! Fortunately, the tumor did shrink and seems to be completely gone. June 2005 - Femur tumor breaks my leg After 18 months of worsening leg pain in my right upper leg, my femur bone shattered. One minute, I was turning a corner in the house and the next minute, I was on the floor. I don't even want to remember the pain well enough to describe it. I have a new goal in life: never to hurt like that again! After surgery, I came home to a hospital bed and a new friend, physical therapy. This was the blow that landed me in the wheelchair. Biopsy confirmed that is LMS. April 2005 - Tumor on chest wall The surgeon removed a tumor from my left chest wall. Biopsy confirmed that is LMS. October 2004 - Tumor on base of scalp The surgeon removed a golf ball sized tumor from the base of my skull. It was painful when I laid on it, and there was no way to avoid laying on it. Biopsy confirmed that is LMS. June 2004 - Surgical Lung Biopsy I finally had a surgical lung biopsy done, after months of referrals and appointments. I was surprised at how much pain was involved after the fact. My back ached for several days. The only thing that helped was hot towels, and my oldest daughter nearly burned the house down trying to heat a towel in the microwave. She set it for 5 minutes and then left the room. The lung tumors are leiomyosarcoma. They are in both lungs, and they are inoperable. I was at work when I got the news. The rain was pouring outside, I knew that my co-workers were nearby with their ears to the wall, and all of a sudden I just couldn't breathe at all. Somehow, I held it together. I didn't cry. I just thanked the doctor, hung up the phone, and went back to work. January 2004 - Tests show that lung tumors are spreading After six months of no insurance (due to Don's plant closing), we finally got TennCare. I went to my new primary doctor's office and asked them to order a chest x-ray to follow up on the nodules. Sadly, the nodules had spread to both lungs and had grown substantially. January 2003 - Lung tumors first appear Chest x-rays showed "spots" in one lung, so I had a bronchoscopy done by Dr. McCormack. Unfortunately, he could not draw enough tissue to get a good sample for biopsy. The results were inconclusive, and I was told to have CT scans repeated in six months to check the nodules. May 2002 - Second Half of Hysterectomy Because my ob/gyn did not think the tumor was cancerous, she only did a partial hysterectomy. In hindsight, I would have told her to take everything out and stuff me with straw. Anyway, Dr. Cofer did this surgery. There was a large cyst on the remaining ovary, but no sign of the cancer. November 2000 - Removal of Tumor from Neck This one had been there so long that the cells inside it had died, so there's no way of knowing if it was LMS. October 2000 - Diagnosed with Primary Ovarian Leiomyosarcoma The tumor was found after a routine checkup. My doctor was rushed by an emergency, and couldn't feel one of my ovaries very well. She ordered an ultrasound, and I cancelled the first appointment. I considered skipping the second one, but Don said, "Go ahead and keep it, and then you'll never have to think about it again." (Famous Last Words, huh? It turned out to be the appointment that never ended.) I learned about the tumor on 10/12/2000, two days after my 33rd birthday. We scheduled the hysterectomy for 10/30. The doctor said that there was a 99% chance that there was no cancer, and she told us after the surgery that there was no cancer. One week later, she called me into the office to tell me that further biopsy had revealed cancer: ovarian leiomyosarcoma. She hinted to us that it was very rare and very aggressive, but it was not until later, after I had done my own research about it, that I realized what I was fighting. But the good news was that the tumor was gone. So the cancer was gone, too -- right? We could only hope ...