Kelly's Story

During October of 2006, my mother was dying of lung cancer. While caring for her, my knee started to ache. It wasn't too painful, but I found myself taking Motrin to help with the pain. I attributed the pain to trying to move my mother into different positions to make her more comfortable. I thought that maybe I had twisted my knee. There was no swelling, just a dull ache. Heat and cold did not seem to help. My mother died on October 18th, and after her death the pain became worse. I am very stubborn when it comes to going to the doctor, so I kept putting it off and began taking more Motrin. I was teaching at the time and my third graders started noticing that I was limping. They kept telling me to go to the doctor. Finally, on Thanksgiving morning of 2006, I went to the ER at our local hospital. I could hardly walk.

An x-ray was taken of my left leg. When the ER doctor examined me he informed me that I had a "tuck" in my leg and instructed me to do exercises that involved bending my leg towards my torso. I explained that that would be impossible as the pain was so extreme. He had not even viewed my x-rays. I asked him if he had looked at the x-rays and he told me that he did not need to because he already knew what it was. My husband and I were so angry. Finally, he looked at the x-rays and informed me that there was something in my leg that shouldn’t be there. Next, he ordered another set of x-rays to be done on my right leg as he wanted to compare. Once he compared the two he informed me to go home, do all of the exercises and call my doctor on Monday.

I went home and stayed off my feet all weekend and did not attempt any of the exercises. On Monday I went to my family doctor who believed that I probably had a benign bone tumor. He referred me to a bone surgeon and an appointment was scheduled for that Friday. When the surgeon entered the exam room he had a very concerned look on his face and he explained that in his 29+ years of surgery he had never seen anything like what was in my leg. He told me that he would not touch me, as he had no idea what he was dealing with. He told me that he knew of only two doctors in the state who would possibly take my case.

On Monday I was contacted by the University of Michigan and by Wednesday we were meeting with a surgeon. She explained to us that after looking at my x-rays, and MRI she believed that I had a benign tumor and that she would remove it. She also informed me that the tumor was the size of a grapefruit and located inside my upper tibia. The tumor had literally eaten away at the bone which was now the thickness of an eggshell. She said that it was a miracle that I had not broken it, and that, had I done the exercises the ER doctor ordered, I probably would’ve broken the tibia. I was told to keep all weight off of the leg as it was so fragile it could break at any time. When I went into surgery to have the tumor removed, the surgeon took a portion of the tumor for a biopsy as it looked suspicious. I was sent home that evening and told to wait for the pathology report.

Two days later I got the call…I had high grade osteosarcoma.

Treatment

On January 8, 2007, I began chemotherapy at the University of Michigan. The chemotherapies made me extremely ill, especially the high-dose methotrexate. Following several rounds of chemotherapy, I had limb-salvage surgery on March 27, 2007. My surgery was successful, however several weeks after surgery I developed a staph infection and the doctors worked to save my leg again. I spent over a week in the hospital before the doctors were able to get the infection under control. I began chemotherapy again three weeks after my surgery. During the treatments, I was inspired by many. My family, friends and students sent cards, made foods and really kept me going. I will always be forever grateful to them for that, as they helped me to heal.

The treatments finally ended on September 14th, 2007. The treatments should have continued for a few more months, but I was having some side-effects, including hearing loss, and my oncologist was satisfied that the cancer was gone. On January 16th, 2008, I was told that I was officially cancer-free!

Recovery

I began physical therapy almost immediately following my surgery. PT has been grueling and difficult. At first, I could not bend my leg past 18 degrees. I was able to bend up to a 104 degree angle with assistance. My PT discovered that my left leg is 3 cm. shorter than my right leg. She put lifts in my shoes and we were amazed at the difference it made. My gait was much better and the pain in my leg and left hip had improved. Now, when I go to therapy I am working on my own to strengthen my leg muscles as well as my ankle strength. I have a noticeable limp and my leg is painful at times. There are things I cannot do, and may never be able to do again, but I thank God and my doctors for giving me back my life!

A New Diagnosis

In July of 2008 I received another devastating blow. I was diagnosed with acute myeloid leukemia. The chemotherapy Doxorubicin that I was given for the osteosarcoma actually gave me leukemia. There was a less than 1% chance that this would happen. Doctors immediately started chemotherapy and the bone marrow team began searching for a donor. During this time two very dear friends of mine, Theresa Iskra and Becky Overbeck, organized bone marrow drives in my honor. This began in hopes to find a donor that would match me. Chances of that happening were pretty slim; however, as a result, over 600 people have been added to the National Bone Marrow Donor List. My family members were tested first and unfortunately, no one matched. After finding a perfect match for my DNA, a bone marrow transplant was performed on November 19, 2008. The man who saved my life lives in Germany. He had become a donor 11 years earlier when his brother-in-law was diagnosed with leukemia. If it weren’t for Michael I may not be standing before you today. In July of 2012, he is coming all the way from Germany, and we will meet for the first time!

Following the AML diagnosis I was hospitalized for many days. I was confined to my hospital room. During this time my leg became weaker and my leg "froze up." This was a terrible blow, as I had worked so hard in therapy to gain more mobility. Once I recovered from the transplant I began going to therapy again; however, I have not been able to get back to where I was post AML. It is frustrating that I will most likely not get my leg back to where it was, however, I am very lucky to have my leg and more importantly, my life!

Since my bone marrow transplant I have been monitored very closely for any sign of Graft Versus Host Disease or GVHD. GVHD is when the host body (me) does not accept the graft (my donor), GVHD can attack your internal organs, your eyes and your skin. Many people die because as a result of GVHD. I had a few issues with GVHD. The most severe was Chronic Dry Eye Syndrome or CDS. My eyes no longer produced tears. The pain was extreme. I could no longer open my eyes and my vision was impaired. After trying several procedures at the U of M, the doctors referred me to a special clinic in Boston. My family and I flew there and I was fitted for the Boston Scleral Lenses. The lenses provided me with immediate relief.

Life Now

I am very lucky to have family and friends who have continued to support me, and I am fortunate to have a wonderful husband and three beautiful children who are the light of my life.

As a result of the cancer, I lost my job as a teacher. This devastated me almost as much as the diagnosis. I had been a teacher for nearly 13 years. Never did I think that I would lose my job because of this terrible disease. As my husband has said many times, he believes that I handled the cancer diagnosis better than the job loss. During my suffering I kept looking to the future and being able to go back to my classroom and continue teaching. When I lost my job I still had several months of chemotherapy to go through. Losing my teaching job made the treatments even more grueling. It was also disheartening and confusing to realize that some people lack so much compassion for others. I have always hoped to teach again, however, my immune system will never be as strong as it once was. As a result, I may never teach again, but I am able to tutor students and I thoroughly enjoy it!

I have made many new friends as a result of having cancer. I have been blessed with new life-long friendships, and my children have met other children who are in a similar situation. My boys have mentored a classmate whose mother was diagnosed with breast cancer, and my daughter attends a cancer support group with me. My children also had the opportunity to attend Camp Kesem, a camp designed specifically for children who have/had a parent with cancer.

In March of 2012, I celebrated five years of cancer freedom from osteosarcoma, and in November of 2012 I will celebrate four years of cancer freedom from AML! Today I am feeling great. I am cancer-free and I am able to spend a lot of time with my three children: Sydney, who is now 15, and my twin sons Tanner and Trevor, who are 8 years old. We spend a lot of time travelling, going to sporting events and visiting family and friends,

Thoughts for New Patients

Never give up! There will be good days and bad. Live life to the fullest. Do not sweat the small stuff. Most importantly, always remember to LIVE, LAUGH and LOVE!

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Copyright © 2012 Liddy Shriver Sarcoma Initiative.