I'm walking for my brother (lymphoma), my uncle (lymphoma), my great Aunt (leukemia), and for me.

Second Chemo Treatment, Nov '03

I was a 28 year-old Captain in the Air Force when I was diagnosed with Lymphoma on Sep 30, 2003. By the end of the year I was in remission and my wife and I thought the worst was over. I had radiation therapy the following spring just to make sure the cancer never came back but a year after radiation therapy one side of my body started to progressively go paralyzed while the other side started to go increasingly numb. My body was over-sensitive to the radiation which hit my spinal cord and there was no way to know if I would end up in a wheelchair because of paralysis on my left and lose all feeling on my right from the neck down. Over the last five years I've had to cope with the slow degeneration of my body.

I went to the Air Force Academy and prided myself in my physical fitness. I got into running races and playing soccer after I graduated. But I woke up one day in late 2005 and my leg was too weak to run on. Before I knew it I couldn't walk without a limp. Of course, radiation to my cervical spine didn't only affect my mobility. Daily tasks also started to give me trouble. I lost the dexterity to tie a tie and tie my shoes. Then I couldn't lift my hand to button my shirt. Then I couldn't grip hard enough to open bottles. On the computer, I was forced to type one-handed which is especially frustrating now that I'm in Grad school.

Radiation didn't only affect my cervical spine. It damaged the hinge that opens my jaw so I can only open my mouth a fraction of what most people can do. Cheeseburgers are impossible to eat. I guess that's no great loss for my arteries but now I couldn't even eat a banana, without chopping it up, or a sandwhich. What I can and can't eat doesn't really matter anyway since radiation destroyed my jaw bone. At the end of 2006 I had the first of what would be five jaw surgeries to try to repair the damage. The longest surgery was 14 hours but they all failed. After the last surgery I lost the ability to swallow so now I get all my food through a feeding tube and I constantly drool since I can't even swallow saliva. It breaks my family's heart to eat a dinner that I cooked but would never be able to taste.

My wife, Betsy, and I were fortunate enough to adopt a baby girl from China in 2008. She has brought so much joy into our lives, but there are so many things I wish I could do with her. I can't play soccer or tag. I can't run to her if she falls down and starts crying. I can only pick her up with one hand so carrying her doesn't last too long. Changing diapers is a nightmare for both of us. Radiation affected my voice and my last jaw surgery paralyzed the left side of my face so reading a book to her is exhausting, not to mention the fact that I can only use one hand to do it.

Radiation damaged one side of my brain also. This caused me intense headaches that continued to get worse until I had surgery early this year to remove part of my skull to make room for my swelling brain. All of these problems seem to have stabilized but radiation damage often pauses for a few years before continuing its slow destruction of whatever it hit during cancer treatment.

What I've been through is nothing compared to what my wife endures. She thought she married a young Air Force officer who was ready to immediately start a family with her. Yet just over a year after our marriage I got cancer. Chemotherapy made me sterile and though she'd always dreamed of giving birth we were forced to adopt. Since our adoption agency wouldn't allow me to adopt domestically, we had to deal with an expensive foreign adoption. Looking back, we couldn't think of life without our daughter, Grace, but this was one of many hardships my wife has had to deal with.

I was medically retired from the military so life as an Air Force wife has been replaced by life with a drooling disabled man and a toddler. Betsy holds a part-time job and now does things that I normally handled early in our marriage. Betsy now mows the lawn, does most household maintenance, ties my shoes, feeds me, cleans, does laundry, and does most of the work raising our child.

I'm not telling you my story for sympathy. There are far worse diseases out there and some children are born with disabilities they'll have to deal with their entire lives. The military takes great care of me. I don't have a lot of medical bills, get good disability pay, and they're paying for me to go back to school for my PhD. I have a beautiful, supportive wife and a daughter who's the love of my life. Cancer has brought out the best in the people around me and I can't believe how blessed I am. I'm telling you my story because I could have avoided all this hardship if there were alternative treatments to radiation or if there was some test to determine people's sensitivity to radiation. Our lives would be much easier if we didn't have to coordinate visits and medications between oncologists, neurologists, neuro-oncologists, oral surgeons, ENT specialists, dermatologists, urologists, gastroenterologists, podiatrists, physical therapists, and cardiologists but no family practice doctor is willing to take on this load so Betsy and I can only hope and pray that we're making the right decisions.

The Leukemia and Lymphoma Society is actively working on all these issues. They are developing alternative treatments for blood cancers and they are focusing on life after cancer. An increasing number of Americans can count themselves as cancer survivors and LLS is funding research to help us answer the question, "Now what?" Betsy and I hope you'll donate to this cause or tell your friends and family to visit my site. I'm positive we can beat this disease so my daughter never has to worry about it. Thank you for taking the time to read our story.

- Brian Liebenow