As I recall, the aching at the back of my left leg - a bit above the knee - began in May of 2008. It was not very painful, just a nuisance. It did not interfere with my daily routines, and I thought I had just strained a muscle while working out on the equipment at Curves. I told myself that it would eventually resolve itself. Whenever I had to bend the leg, such as when climbing stairs, sitting, or lying down, the ache would be there. It did not hurt to walk nor did it hurt if I kept my leg straight instead of bending it while sitting or sleeping. This continued throughout the summer, and I eventually started taking Ibuprofen, which did relieve the ache temporarily. Finally, in September, I went to see my family doctor. I described the situation and told her that I felt rather foolish seeing her for this, but by that time I was really tired of living with this nuisance. Her examination of the leg showed nothing out of the ordinary, no bumps or lumps, so I continued with the Ibuprofen for another two weeks as she suggested. When nothing had changed by the end of the two weeks, my doctor referred me to a physical therapist. He performed massage therapy on the leg during two appointments, which felt good for the time being, but the ache would return once it was over. It was the physical therapist that suggested an MRI might be in order. And so it was that for the first time in my life I experienced the clanging and banging and thumping and thudding of an MRI machine.
The results of the scan showed a mass deep in one of the quadriceps, nothing that would have been discovered simply by looking at or touching the leg. My doctor called me in the evening with the news that this mass might be a sarcoma and to tell me that she was referring me to Dr. Joseph Buckwalter at UIHC. She assured me that I would be in competent hands. Sarcoma, what was that? I had heard the word before but had never delved into the particulars of what it meant. I just knew it was something I did not want to have. I thought it was some kind of cancer, and I really didn't want to have that word associated with any part of me. Nevertheless, here I was, about to learn more about sarcoma than I ever wanted to know or experience.
I met with Dr. Buckwalter soon after the scan results came in. He asked about my symptoms, and I remember him saying, "That has to come out." I also met with Dr. Mohammed Milhem who explained the nature of the sarcoma and the treatments that would follow the surgery. It was not good news, of course, but had I waited to see my family doctor much longer, the news might have been worse. Dr. Milhem told me that I was fortunate to have come in when I did because this fast-growing, high-grade sarcoma had not yet grown into the bone but was very close to it.
On November 7, Dr. Buckwalter performed surgery to remove the tumor. Actually, one quadricep was removed and part of another muscle so as not to disturb the tumor itself. According to the pathology report, lymphovascular space invasion was also identified. The mass measured 7.5 x 4.5 x 3.0 cm., slightly smaller than the size of a credit card. I was told that less than 1% of sarcomas are of this nature, and that they really do not know what to call it specifically. The incision measures about 6 inches. (Incidentally, return visits to have my leg checked out by the doctors, various residents and interns, not to mention all my family members that wanted to see it, had me thinking that perhaps I should capitalize on all this attention and start charging a fee for each peek.)
After two days and nights in the hospital, I went to my sister's home in Oskaloosa to recuperate for the rest of November. She and her husband did a wonderful job of attending to my needs and wants, and her two naughty cats provided entertainment for me as well. I fell only once when I tried to climb some stairs in the normal adult way. I learned that I would need to put both feet on each step before going to the next one as I ascended or descended and hang on to the railing. By December, I felt that I could manage on my own at my home in Muscatine. I was a bit concerned about the 17 steps that I need to climb to get to my second-floor condo, but that turned out to not be a problem. I had learned my lesson earlier and negotiated my own steps in the same way.
Thirty-three rounds of radiation treatment began in February supervised by Dr. Bhatia. I experienced no ill effects from these treatments. My first round of chemotherapy began in April. Dr. Milhem told me that I would need six rounds with three days and three nights in the hospital each time and three weeks between rounds. The amount of chemo that I would receive would be more than that of a breast cancer patient but less than that of a transplant patient. I made it through one and a half rounds before stopping it altogether. My body just could not tolerate it. Again, my sister took me to her house to recuperate after I was dismissed from the hospital. I was completely exhausted with no motivation to do anything but look out the window and watch spring make its appearance. I had no appetite, my teeth and gums hurt when I brushed them, and I just wanted to sleep most of the time. I had thought that I would spend time reading, but for some reason I just couldn't concentrate enough to even enjoy a book. I had always been an avid reader, and thought at least that would be a bright spot during my recovery but unfortunately it was not to be.
AND THEN MY HAIR STARTED FALLING OUT!!!!!!! I was and was not prepared for this. I knew this would happen, but still, it was rather unsettling to have it come out in clumps while I was showering. Rather than see it slowly disappear, I decided to take matters into my own hands, or rather put them into the hands of my nephew Andrew, and have it shaved off. We sat out on the deck on a bright spring day as he took the shaver to my head. By the time he had finished, both of us were laughing and crying at the same time. Having no hair was definitely the most painful part of this experience. I had not experienced any physical pain after surgery or during the radiation and chemotherapy treatments, but this was just a bit too much for me. It was the only time I cried. I HAD made one important preparation for this eventuality, however. In March, before the chemo began, two of my sisters, a niece and I had gone shopping for a wig in Des Moines. Fortunately, I was able to find one that was styled much like my own hair. I came to eventually look on this cranial prosthesis as quite a convenience and a time-saver when getting dressed in the morning and even entertained the idea, albeit briefly, of making this a permanent part of my life. My wig and a cap that I had also purchased were my companions for about six months.
Dr. Milhem was half right. He told me that my hair would grow back in green and curly. How half right he was!! It is definitely not the same hair that I had before chemotherapy, but my stylist and I have been working to deal as best we can with what I have now, and yes, I am glad to have my own hair back again, unruly as it may be at times. No blow dryers or curling irons yet, just some gel, a comb, and fingers putting the strands into place. I don't complain about it…too much.
My life is back to normal now, for which I am grateful. My legs do feel different from each other when I walk. The left one has tightness just above the knee, which is not easily described, while the right one feels like it always has. I cannot walk very far or very fast without tiring easily. I'm hoping this will change over time as the other muscles in my legs compensate for what is not there. I still need to go for MRI and CT scans every three or four months to see whether or not those rogue cancer cells have decided to make a home elsewhere, and I do become a bit anxious on the night before the scans wondering what the results will be. So far, the reports have been in my favor, and I am grateful to be living in a time when such excellent medical care is available.
I have always been in good health and had never spent a night in a hospital before this experience, so I have a new appreciation for the care that is available and was given to me by the staff at UIHC -- Dr. Buckwalter, Dr. Milhem, Dr. Bhatia, Wendee Beranek, and all the other nurses, residents, interns, technicians, and their assistants. They provided excellent and gracious care. I am also thankful for my family, friends, and neighbors who supported me with their offers of rides to the clinic and hospital, a place to recuperate, and being there when I had to rely on someone other than myself -- Bonita Bower, Alice Huss, Gil and Virginia Dietz, Gwen Hansen, Cindy Taylor, Judy and Craig Stark, Shawn and David Langkamp, Andrew Langkamp, Linsey Hoppestad, Pam and Steve Nogel, Jean Duggan, Lois Birkhofer and the many others who sent cards or called to wish me well. And I know with 100% certainty that my mother, Lois DeBeer, was praying for me. I would stake my life on it. Ever the optimist, she recently told me that she believes I will live to be at least 99 years old, just like my great-grandmother, and if her prayers could make it so, I will indeed live to see many more beautiful Muscatine sunsets, tend to my flowers in summer, enjoy the colors of the leaves in the fall, feed the birds in winter, look forward to spring again, read many more good books, and enjoy the company of friends as we have lunch and play Bridge. I am truly blessed.
Update as of July 23, 2015:
The cancer had spread in my leg to the point that it needed to be amputated (hemipelvectomy) on April 17, 2015, by Dr. Sean McGarry at Nebraska Medical Center in Omaha, Nebraska. He said that I am now cancer-free. My scans yesterday, July 22, showed no evidence of tumors. I've been doing therapy at a rehab center in Omaha for the past month after spending 6 weeks in the hospital. Dr. Fred Durden from the plastic surgery dept. performed a flap rotation after the amputation. I am currently in the hospital again waiting for the skin graft that will finally close the wound. I think tomorrow that will happen. Then some more rehab and then FINALLY home to Orange City, Iowa, after spending 4 months in hospitals and rehab centers! I now use a walker and wheelchair to get around, and believe that I will manage well on my own in my own condo. It is all on one level with no steps. I'm eager to get back to it.
It's a journey that needs to end. Four months away from home in hospitals and rehab is too long for a person that values privacy! I had great treatment with everyone at UIHC, but I had to move closer to family in northwest Iowa for support -- 7 hours away from Iowa City.
Rachel passed away on April 3, 2016 from sarcoma.