Elaine’s Story

Myxoid Chondrosarcoma at the Pelvis – with lung mets
Age at Diagnosis: 52
Year of Diagnosis: 1999
Surgeon: Dr. Alan Yasko, Houston

Diagnosis: After several months of pain down my left leg which was similar to the pain I had in 1983 from a ruptured disc, I went to see an orthopedic in October, 1998. He made x-rays in his office and told me that I had a “calcium deposit” in my left hip area and the pain was just something I would have to “live with.” He suggested I see a pain management doctor for possible injections. As long as I was up moving, my pain was less, so I began walking 3 miles 4 or 5 times a week. I found I could not sit on the floor or in a metal chair as within minutes the pain would become unbearable. As 1999 came, my pain progressed to the point that my nights were spent in a recliner as I could get enough relief to allow a few hours sleep. Over-the-counter meds such as ibuprofen and tylenol were taken on a regular basis. By May, 1999, I could feel a significant growth near my waist on the left wide just above my pelvic bone. Sitting was becoming very painful. I quit my job in June, 1999, as it involved sitting at a computer for hours. As the summer passed, the pain became almost constant and the area near my waist became larger. On October 14, 1999, I had an appointment with the neurosurgeon who had performed my previous back surgery. I told him that “I can’t live like this.” He recommended that I have an MRI done. [My first granddaughter was born on October 13, 1999.] The MRI was done and I returned to the neurosurgeon’s office about October 20, 1999, when I received the news that there was a very large mass in my left pelvic area. A needle biopsy was scheduled within the next couple of days. The diagnosis was chondrosarcoma. An appointment was made for November 9, 1999, at M. D. Anderson Cancer Center with Dr. Alan Yaskco, Chief Orthopedic Surgeon. Surgery was scheduled for November 29, 1999.

Treatment: The surgery was very involved. The tumor (Chondrosarcoma Grade III myxoid) was 27 cm x 7 cm and the sciatic nerve bundle was wrapped around the tumor. Surgery was approximately 16 hours and involved an internal hemipelvectomy and sacrectomy on left side with removal of muscle, etc. I was a patient in the hospital for 41 days. [I celebrated New Years 2000 in the hospital.] Approximately 2 weeks after the initial surgery I had to go back to surgery and have some debriding done to the incision as a skin flap had not survived. Because of stretching of the sciatic nerve, I have foot-drop on the left foot and diminished sensation in my left buttock, leg and foot. Laminectomies from L-4 to S-4 were also done. By the time I was able to return home, I was able to use a walker for very short distance and able to get out of bed with assistance. My incision began in the left lower abdominal area and extended up across my pelvic bone/waist to just right of my spine and down to the end of sacrum. Home health nurses came to change dressings and check incision. Approximately 1 week after I was home, I began to run a low-grade temperature. An abcess developed in the incision near the right of the spine and down into the left buttock.

In April, 2000, I returned to M.D. Anderson to have fluid removed from the abcess. Drainage continued until June, 2000, with home health coming daily to flush and pack the abcess. A rather serious problem developed in early June when one of the nurses failed to remove all of the packing from the wound, but thanks to my local physician and strong antibiotics, this was nipped in the bud. Finally the wound closed and I was able to begin serious physical therapy.

Recovery: Finding a local physical therapist who knew how to work with my physical limitations proved to be an effort, but on the third attempt I finally found someone who “got it.” Working with her, I moved from using a walker to forearm crutches to a quad-cane within three months. Because of the instability in my lower back, I continue to use a wheelchair for 90% of the time. I can walk for short distances with my cane but have found that if I push myself to walk, I develop considerable pain in my hip and leg. Also, with the foot-drop I have to be very careful or I will drag my foot and have come close to falling numerous times. Further, I have developed mild scoliosis as a result of my body making adjustments to keep me up straight. Also, there is considerable deterioration in my pubic symphysis. (I have only fallen once but managed to fracture what remains of my “tailbone” in that fall.) I can pretty much do most of my housework with the exception of changing lightbulbs and cleaning the top of the fridge…I’ve learned to mop, vacuum, etc. seated in my wheelchair. Most everything just takes a lot longer to get done.

Other than learning to make adjustments in what I could do physically, after the first year I had no new problems until November, 2003, when CT scans showed 5 tumors in my lungs. We are now “following” the growth of these tumors…two in left lung and three in right. They continue to exhibit very slight growth and remain smaller than 1 cm. At my last check-up on March 30, I was advised that it is time to “get them out” to avoid seeding new tumors. I am currently researching options to surgical removal.

Life Now: Life goes on. In May, 2003, my second granddaughter was born. That fall I was able to keep her for two or three days a week while her mom taught school. I amazed myself at how I managed as she grew over the next year. Thankfully, I had days to “recover” before my next round of “sitting.” I really loved every minute of it.

During that first year following surgery, I found myself dwelling on the things that I could no longer do, but I finally learned to search for the things I could do and before long I found that those outweighed the “I can’ts.” Lots of things I do now are just done in a modified manner. I have had to learn to depend on others for help in many areas and I have had to learn to accept that help. (This was really hard for me as I have always been very independent and impatient.) I have a golf-cart that lets me get around my yard and the 35 acres we own, so I can follow my hubby when he’s out and about. The large flowerbeds are diminished in size to lots of containers and small beds that I can reach from my golf-cart. I never really had a green-thumb anyway! My little granddaughter doesn’t understand why I can’t pick her up when I am standing, but she lets everyone know that “mamaw’s” wheelchair is off-limits to them. When I am sitting in the wheelchair, she backs up to me so that I can pick her up. She did this on her own when she started walking.

At times I miss “working.” Then I only have to listen to some of my friends for a few minutes about how anxious they are to retire because of the stress of their jobs, and I am thankful that my disability check is deposited in my checking account each month and I don’t have to leave my house.

I continue to return to M. D. Anderson every 3 or 4 months for check-ups. About twice a year a couple of my friends go with me on these trips which then become “fun” trips instead of boring medical tests and appointments. We have made lots of special memories these past several years because of the time we have spent together due to my “illness.” We would probably never have made trips together had it not been for the change in my circumstances.

My faith in God is stronger now because I have had to learn to lean on Him so much more, and I think that I value people and life more. There are so many things that I took for granted before surgery that I appreciate so much more now. (Try putting on shoes without being able to move your toes. And pantyhose! What a sight!) I have begun to understand that God really does have a sense of humor and that laughter really is great medicine.

There have been days when I have cried and yelled and had major pity-parties for myself because of something I couldn’t do, and there was a period of several months when Prozac was necessary to make life livable (my husband’s life was much more livable during that time when I was on Prozac.) So, don’t berate yourself if you have those days or weeks. After all, we’re only human.

Thoughts and Hints for New Patients: Don’t give up hope! Just because you have been diagnosed with cancer, that doesn’t mean you are going to die from it. It just means that your life has taken a different turn. Learn to make adjustments. Let people help you. Go to the specialists even if it means hours of travel time. It is your life and you do have input into your medical treatment. Find a support group either locally or online. Start a journal and keep it up. I started one but didn’t keep it up and I really wish I had. My opening line was…And so the journey begins… Well, here I am 5 1/2 years later and I’m still on this journey.