September 2007

I recently read an article about one’s defining moments. It reminded me that the things in our lives that really take guts are the things that help us discover we have what it takes to do something. The easy things in life don’t make us who we are. The really tough things do.

For the past nine months, I have grown more as an individual than I have in my past 40 years. In January, I was diagnosed as having a simple squamous cell cancer in situ; which meant that it could easily be removed by fairly simple surgery with no follow-up care. Unfortunately, it wasn’t as simple and easy as everyone thought and the tumor was actually growing into tissue.

The physician who was to treat me had no desire to discuss the course of treatment with my nephrologist or to do further testing to ensure the cancer had not spread to other parts of my body. He simply told me radiation would take care of it. This sent up a red flag to me and my nephrologist, and I immediately changed to an oncologist who believed in the team approach to my healthcare.

For two months, the diagnosis was illusive. First there was thought the cancer had metastasized to my liver but a liver biopsy and various scans could not confirm it. After a roller coaster of positive versus negative diagnoses, a final liver biopsy came back positive. My world stopped. How on earth could something that started out so harmless suddenly be changing everything?

For a week I walked around in a daze. I functioned in total normalcy keeping this sudden diagnosis securely tucked away with my family and closest, dearest friends. I attended AAKP national events, spoke at a meeting and worked as if nothing had happened. Then reality hit and I was told I had to start chemotherapy.

My oncologist was fantastic, working in tandem with my nephrologist to ensure my kidney transplant was safe. One of my immunosuppressive drugs was removed from my regiment and I met with oncology nurses to learn about chemotherapy.

On March 26, I began weekly treatments. Most people don’t get chemo weekly, but it was a way to give me a lower dose in hopes of saving the kidney and still achieve the needed effects of killing the tumors. My chemo treatments last two hours; an amount of time I have come to think of as my personal time to read or watch television. No cell phones or e-mails to interrupt me.

My oncology unit has only six chairs and two registered nurses who have made my treatment so much easier than I could have ever imagined. They are extremely positive and call the treatments our “spa appointments.” The atmosphere is cheery and fun and I’ve never encountered anyone who is negative.

My oncologist learned early on that I had to be the leader of my team. I cannot tell you how quickly I absorbed everything there was to know about cancer. I am lucky because I have a group of five physician friends from different specialties who taught me everything to ask and discuss. When I was feeling particularly overwhelmed early on in my diagnosis, one of my physician friends called my oncologist to ask the questions I couldn’t. I loved that my oncologist was so open to such a discussion.

On June 8, I had my first CT scan since starting my chemotherapy. I surprised everyone with major reductions in the sizes of the liver tumors. I am responding to the treatment. It is making a difference.

I have a planned course of chemotherapy until the fall. My doctors are positive that this is working and the ultimate goal of a complete response (meaning the tumors disappear) is realistic. In the cancer community, cancer is thought of more as a chronic illness as opposed to an acute illness. I may have further treatments in the future or I may not. No matter what, I will always be followed to ensure the cancer does not return.

The chemotherapy is nothing like I expected. Most people only know about the long ago side effects of being a chemo patient. I have never gotten nauseous from the treatment. I work full time. I travel. I physically do everything I’ve always done. And for the most part, feel just like the Kris I’ve always been. One side effect I do experience is joint and bone pain, but that is reduced with medication.

I could never have started on this journey without my support system. First of all, my parents have been my rocks. They are two of the most positive people I know. They have been there for me through the tears and the laughter. Yes, there is quite a bit of laughter with cancer.

My friends have been my inspiration and each one brings a different perspective to me. One dear friend has been through cancer and she keeps me sane about my treatment and its side effects. She reminds me often to slow down and take it easy, a personality trait I’m not to good at. Another friend is a nurse and she answers all my medication questions and tells me how strong I am. A third friend calls me every day to check on me. My friends make me feel incredibly loved and cared about. Then there is that crazy pack of five physician friends who keep me focused on the prize and keep my spirits high.

I firmly believe, just like with kidney disease, that the mindset is what ultimately helps one to do well with any chronic disease. Being positive, continuing to work or be active and believing that I can do well, has made a huge impact in my treatment. Early on a friend said to me, “Don’t think ‘why me?’ think ‘why not me?’”

In no way do I make light of this experience. It truly has defined me. It has shown me real fear. It has made me confront my mortality. It has made me grow in new and unexpected ways. But it has also made me laugh. It has made me realize what is and isn’t important in life. It has made relationships stronger than I ever imagined. And it has taught me more than I ever thought I could learn.Regards,

Kris Robinson
Executive Director/CEO