A Profile of Hope - Kristin’s Story

In Kristin's own words . . .

Here is my story. We had just moved to California in the summer of 2006. My mother was visiting and we spent the day at the spa getting massages, a first for me. Afterwards, I developed a serious migraine like I had never experienced before. The next weekend my husband and I were celebrating our anniversary on Catalina Island and I began experiencing serious back pain. The pain did not go away and would keep me up at night. I later learned this was bone pain and a symptom of my diagnosis. I went to my internist who ordered everything, X-rays, physical therapy, a chiropractor, exercises, icing and heat. Nothing worked and nothing showed up on the X-rays, since they were only focusing on my lower back.

Then in October I developed a cough. I did not care about the cough, as I was more concerned with my back pain. But, my internist thought I should get it checked out. She sent me to an allergist. It was right around the same time as the fires in California and I just thought it was due to all the smoke and ash in the air. I was tested for everything, but nothing came back conclusive.

After the holidays, since I was still experiencing the symptoms, I went to see a pulmonologist, who asked that I get a CT scan. When he got the results he told me he thought I had stage IV lung cancer, which completely freaked me out. He scheduled an immediate biopsy. The doctors knew it was Hodgkin lymphoma when they saw the tissue sample. I went to test my bone marrow and get a PET and CT scan for staging. It was in my bone marrow and organs. The reason I was having so much trouble breathing was that it was concentrated in my chest. My final diagnosis was Stage IV Hodgkin lymphoma.

It all happened so fast. I was just going with it, from appointment to appointment. I did not have time to stop and the ask questions that I would know to ask now.

My treatment began with ABVD chemotherapy on Valentine’s Day 2007. Every other Friday I would have an infusion. My hair thinned and I felt tired and nauseous, but I was managing. I had good insurance and a supportive family, friends and boss. I had a routine where I would work during the week, get my treatments, recover over the weekend and then start all over again. I consulted a nutritionist and used his recommendations to change my diet and start taking supplements. This continued for five months. Then a PET scan showed increased activity. The cancer was not going away. It was getting worse.

In Sept 2007, after consulting with my doctors about my options, I was accepted into a clinical trial for a tandem transplant at City of Hope. A tandem transplant is basically an autologous stem cell transplant done twice in a short period of time. I began ICE treatments. After my first round of treatment my white cell counts got very low. I was sick constantly. I lost my hair. I was always tired. I think this is when it finally hit me, "I have cancer." I had to face what that means.

In October, I took a leave from my job and I began apheresis. I spent three weeks in the hospital for my first transplant and got out mid-November. I was home for two weeks and then went back for a month to complete the second and final transplant. I was in a sterile unit, but I kept in touch with family and friends through Skype and a Care Page.

The second hospital stint seemed like a breeze compared to the first time. I was released home on Christmas Eve 2007, and my grandparents, both in their 80's, came to spend the holiday with me. I spent January and February 2008 bringing up my white cells and making sure my scans were clear. Currently no new activity is occurring and I am just being monitored. I call 2007, "My Year of Cancer."

Experiencing this, I have learned that cancer is not the end of the world. You can survive it. I did. I encourage people to be patient and trust your doctors, but at the same time be smart and learn all that you can. Ask questions and be your own advocate. Consider your options and be aware of side effects that can result. Do not be afraid to trust your friends and family. It is okay to lean on them for support. I also encourage others to utilize trusted organizations for support, such as the Lymphoma Research Foundation, LiveStrong’s Fertile Hope and the Leukemia & Lymphoma Society's Light the Night event.

I also became involved in the Lymphoma Research Foundation’s buddy program, called the Lymphoma Support Network. When I was diagnosed I could not find anyone out there with a similar story. What I found on the web were not positive stories. I heard about the Lymphoma Support Network from a friend. I was matched with a woman who told me her story and it was like, "If she is fine now, I can do it too." After I was better, I was matched with other lymphoma patients that I told my story to. One woman's story was very similar to mine, and she had relapsed, so we discussed my transplant and other treatments out there. With this program it is nice to know that when you are ready to talk there is someone out there to talk with.

I also use my diagnosis in working as a counselor for college students. I have students that have been diagnosed with cancer and I am so grateful to be in a spot where I can make a difference. I understand they are struggling and I let them know they have options.

Lymphoma has changed me. When you first hear you have cancer, you automatically fear the unknown. While I was going through it I never knew what life would be like "after" treatment. I am doing better than I expected. I did not know if I would reflect back and say that I could look at it as a positive experience, but I can, and now I use my experience to help others. It is really hard to put into words, but I am just so grateful for all of my friends, colleagues and family. I now put myself first and never let anything get me down. Life is too short.