Sara - Leiomyosarcoma (LMS)
Just before Thanksgiving 1998 I noticed a lump on my left index finger. It really didn't bother me except when I used the signal post in the car. It remained the same till shortly after Christmas. Then it became a little sorer, a little larger but still was not hurting me. About mid Jan I noticed that my finger seemed to be 'twisting' and decided that I should see a doctor. Of course it was another week before I could get an appt. He thought it looked like an infection and gave me antibiotics. 5 days later it had become swollen, red and sore to the touch. I was sent to a general surgeon for a needle aspiration. Thankfully, he took one look and said he didn't feel qualified to do this and sent me on to a hand surgeon. This doctor decided to do a biopsy and set it up. I went in the following week (now Feb.). I knew it was serious when I heard him say he had never seen anything like that. The following week he told me the news; LMS. I did the research and went back and discussed my options. Since he had not gotten clear margins and it would be impossible to do so, we decided on amputation. I had a chest CT at this time and it was clear. Following the surgery, another CT showed 13 mets in the lungs. I had seen an onc who set up a consult with a sarcoma specialist and we decided to go with MAID chemo. I did 5 rounds and have been clear for well over 2 years. I am now on 6 month CTs.
Georgann - Liposarcoma
Oct 2000, I was sitting at my computer doing my ebay thing and I put my hands on my thighs to push off and get up when I noticed a lump on the top of my left thigh. I was surprised to say the least because it was so large. It was soft when my leg was relaxed and it got hard when I flexed, so I was confused as to what it could be. I told my husband about it and then called my mother to get some advice. Good ol' mom, she always knows. I just kept flexing and relaxing trying to figure out something, like it if hurt when I did a certain thing, but it was totally painless. I also hadn't been straining or exercising because I had just had a baby 4 months earlier and I hadn't gotten my regular "super mom" strength back yet. I finally called "ask-a-nurse" which is run by a local hospital and staffed with nurses who takes calls from people who have medical questions. I talked to a nurse who asked if I had hit my leg in that location and I answered no, and I finally got her opinion of "put ice on it and see if the swelling goes away". Well I knew better because I hadn't done anything but sit at my computer or at the most walk up and down my stairs. I decided to call my GP the next day and I got right in to see him. He was baffled. He and his assistant told me, after an examination, that I had a muscle tear that caused my muscle to ball up. I thought to myself, no way, I didn't do anything to get a muscle tear. He asked me if I would like to get another opinion and I said, I will go home and think about it. I talked to my husband when I returned home and said that I didn't feel right about the diagnosis and he agreed that if I didn't feel comfortable that I should see another doctor. I called my GP back and asked to be refered to an Ortho and I had an appt within the week to see him. He ordered an MRI for me and I went to the hospital one week later. I waited for what seemed like forever for the results and finally the phone call from Dr. Yeakly came in. He said that the radiologist looked at my MRI and thought that it could be schwannoma. Since Dr. Yeakly didn't deal with things of this nature, he said that he would refer me to a Doctor up at the Medical Center in Omaha. I asked if this was cancer and he said, 'It could be, we just can't tell."
I went up to my refered doctor, Dr. Neff, he is one of the Sarcoma specialist as I would learn later at the University of Nebraska Medical Center. He did a biopsy of my leg and I waited TEN excruciating days for my results and when I went back for the visit on November 10th, I was told that I had Liposarcoma. I guess I didn't realize at the time how serious this disease is, but I immediately started to surf the web for answers to all of my questions when I returned home. I called all of my family and told them the news, and tried to answer as many questions as I could.
I was scheduled to start radiation in January and I went through five weeks of driving 100 miles a day for my treatments, boy was I glad when those were over. I finally had my surgery on March 2nd and all went well, or so I was told when I woke up from La-La land. I was in the hospital for 5 days and then walked with crutches for another 2 weeks, then a cane for a while until my leg got strong enough to move on it's own. Therapy also helped me a lot on my way to recovery. I had a low-intermediate staged tumor which was the size of a smushed grapefruite pre-rad and then shrunk considerably post-rad. Dr Neff said that the margins looked good and the next step would be a check up in 3 months, and that is the story. I am going to my regular check ups every four months. A full day of Lab, X-ray, CT, MRI and I also get a bone scan once a year. I do though have one spot on my left lung that they think is scar tissue from a bad cold, it hasn't grown since my last tests,(thank God) and I also have a spot on my right lung that they can't tell what it is, just showed up this set of tests. They say it's non-calcified, so it could be anything, including mets, but right now it's too small to tell. I go for my next set of tests in March.
I am a mother of 3. Micheala - 9, Jameson - 2 1/2, Aaron -16 months. I was married only 3 years ago this last Oct to a wonderful man who has been my rock through this whole thing. He keeps telling me that my kids need their mother and I agree. I am not going anywhere soon. This cancer might be an unknown to a lot of people, but I know it all too well, and I will not let it beat me!
I cling to the fact that I have tomorrow, for now, and I cherish that more than anyone will know.
One of my classmates in college wrote this for me to use in one of my design projects and I still, 5 years later have it hanging on my computer.
The life you have led need not be the life you have........ Dream.
I live by that, and always will.