I do what I can with what I got…

     I just returned from an amazing weekend spent in Winter Park, Colorado. I was invited to attend the No Barriers Summit by Brian and Brittany Anderson, a lovely couple that have started the non-profit Footprints Adventure. They lead action adventure camps for amputees and others with limb differences. The No Barriers Summit brought together people with physical disabilities (blindness, deafness, amputees, wheelchair users) to try various outdoor activities. Each participant could choose four activities, and in between, we listened to the professional who invent adaptive equipment, study various disabilities, and overall encourage the “No Barriers” mission. The four activities I chose were camping, river rafting, skateboarding, and hand cycling. I was very successful at everything I tried!

     I was especially excited to try hand cycling. I kept thinking of how this is something I can easily do back in Iowa, and if I’m able to obtain a hand cycle, I could possibly participate in the courage ride myself! I have never been able to do the actual ride before. There is a non-profit based in Solon called Sport Ability, and on July 9th (very soon!) they are having a Bike for Bikes fund raiser. Their bike ride around Iowa City is trying to raise money so that they can purchase two hand cycles for disable athletes to use. I have already contacted them about borrowing one for the Courage Ride, and if they get the cycles, I’ll be allowed to use one. Of course I’ll need to train and build my strength, but just the opportunity gets me very excited!

     Hopefully those of you out there who have considered riding are signing up, too! It’s a great ride for a great cause.

–Abbey

Abbey Almelien – cancer survivor in support of The Courage Ride

My name is Abbey Almelien, and I am currently 32 years old. To say that I am in the fight of my life is by no means an exaggeration. In fact, by according to most of the doctors I’ve seen at the University of Iowa’s Holden Cancer Center (and beyond) I have out-lived my disease, and am continuing to impress them.

This current fight began nearly three years ago with a limp in my right leg, pain that gradually worsened, and eventual loss of function. Watching and waiting wasn’t doing anything, so eventually an MRI was taken to reveal a 5 cm tumor on my right sciatic nerve. The tumor was up in my hip, so it never made an obvious lump. In August we tried chemotherapy, but an allergy prevented me from getting more of that type. In September it was time for surgery, and I decided (with much counseling from my doctors) to go with the big one. I had an amputation called a hemipelvectoy where the right half of my pelvis and my entire right leg were removed. I knew I needed to do everything I could to beat this awful disease. This was not my first experience with cancer, or even my second. When I was only 3 1/2 years old, I had a childhood cancer called a neuroblastoma. With only a 20% chance to beat that disease, my parents were willing to try most any therapy offered to them to save their little girl. I received chemotherapy, radiation, and surgery, and miraculously made it through. In 2006 I was having trouble in the form of blood in my urine which was determined to be coming from my right kidney. Not much of that kidney was left after the neuroblastoma surgery (the tumor was on the adrenal gland which sits atop the kidney), so removing it wasn’t too big of a problem. After the kidney was removed and sent to the lab, they found a second malignancy in it. Luckily no other treatment was necessary at that point.

This third cancer has unfortunately turned into a much bigger deal. It is a type of soft tissue sarcoma called Malignant Peripheral Nerve Sheath Tumor (MPNST) and is quite rare. Sarcomas account for 1% of all adult cancers, and MPNST is about 5-10% of sarcomas. Since mine is most likely radiation induced, that puts me in the even smaller category of 10% of MPNST patients. Because of this, and all the other issues with cancer growing and mutating so quickly, there is no clear cut therapy for treatment for my type.

For nearly the past three years, I have been living with this cancer as my full time job. I have been unable to work as my cancer has grown and spread leading to 5 rounds of radiation, 5 surgeries (in two locations) to excise metastasies, and two more round of chemotherapy, the last of which I am currently on. Luckily, this chemo is working to shrink the tumors I have in my lungs, and it seems to be buying me even more time. I am under the wonderful care of Dr. Mohammed Milhem who watches my case very carefully. He has been fortunate to had numerous studies about sarcoma, and with additional funds from the Courage Ride, will be able to continue that great work. As a current patient I thank you all for support and awarness of this great bike ride!

Abbey Almelien Banh