Survivor Support

In the fall of 2004, I was beginning my junior year at Texas Tech University. I was on track to graduate in August of 2005 and had plans to attend graduate school. During the first semester, I noticed a knot on the back of my head while watching a movie with my mom (she was visiting me in Lubbock for the weekend). Thankfully, she urged me to see the campus doctor the following day. Based on initial blood work results and the symptoms, I was told I was more than likely suffering from a bacterial infection and I was treated with antibiotics. As a precaution, I was told to come in for more blood work after two weeks. During these two weeks, I noticed a recurring rash that would appear around the same time everyday. I knew at this point, my body was trying to tell me that something was wrong. I went in for my second round of blood work and went about my day as usual. Later that afternoon, I received a call from the clinic that my results were in and I needed to come back right away. Of course, this did not sound good, but I tried to remain calm. As the doctor was explaining that I needed to see a hematologist to get more extensive blood testing to check for lymphoma, two nurses stared back at me waiting for a reaction. I am ashamed to admit that I had never heard of lymphoma, had no clue it was cancer, and wasn’t terribly afraid at that point. It was only after reading “R/O Leukemia or Lymphoma” upside down on the nurses paperwork that I became completely shocked. I remember asking, “Could this be something serious?” The doctor tried to reassure me that the testing was necessary before any diagnosis could be given, but I knew that something was wrong and deep down I knew it was leukemia.

With the possibility of having cancer looming over me, I decided it was best to take incompletes in my classes and head home to be with my family. I was officially diagnosed with leukemia in November of 2004. The news was shocking, but expected at the same time. Over the weeks leading to the diagnosis, my body was completely “out of whack.” Lymph nodes were swollen in the back of my head and pelvic area, my gums were swollen and bleeding, and I was extremely fatigued. I was referred to an oncologist at Baylor Medical Center in Dallas. During my first appointment, he went over the treatment plan with me. The standard treatment would be three rounds of intense chemotherapy in hopes to reach remission. I checked into the hospital on November 15th to begin my first round of chemotherapy. An intense first day included meetings with doctors, blood tests, a bone marrow biopsy, and surgery to place a central line. Of course this was terrifying and led to my first fainting spell!

I was in the hospital for over a month during my first round of chemo. Surrounded by friends and family, I remained strong and hopeful for the future. My mom was by my side every step of the way! During this stay, I purchased a wig in order to be prepared when I lost my hair. Fortunately, I made it through this round of chemo with enough hair in place to get by with just a hat. I was released in time for Christmas and was so excited to be home!

In preparation for my second round of chemo, I was told that I had a gene that was resistant to chemotherapy. The gene would make it impossible to stay in remission long-term. The only chance for survival would be a bone marrow transplant. My sister was tested immediately, but she was not a match. As the bone marrow registry was being searched, I began my second round of chemo. I decided to do this round as an outpatient, commuting daily from an apartment to the hospital for treatment. This round was more draining physically and emotionally. We were thrilled and so very relieved when the news came that a match was found! I would have an unrelated, international donor!!

I returned to the hospital in March to begin my third and final round of chemotherapy to prepare for the bone marrow transplant. This round required much higher doses of chemotherapy to completely destroy my bone marrow and cancer cells in order to make room for my donor’s marrow. I received a life-saving bone marrow transplant on March 18, 2005. The transplant was celebrated as a “new birthday” and I continue to celebrate it with my family each year!

I remained in the hospital for several weeks post-transplant until I was stable enough to be an outpatient again. The weeks after the transplant were very draining and hard on me physically. I constantly had to watch for any signs of Graft Versus Host Disease that could cause a complete rejection of the transplant. The symptoms of GVHD were very frightening and the thought of my body attacking my donor’s cells for being “foreign” was very hard to understand. Fortunately, I was able to control the GVHD with medication and was released to go home in time for my 21st birthday!

I went back to Texas Tech in August of 2005 and graduated Summa Cum Laude and was recognized as the highest ranking graduate in the Rawls College of Business in May 2006. I was determined not to let cancer get in the way of the goals I had set for myself. Going back to school was much more difficult than I ever imagined. I went from being completely co-dependent on family, friends and doctors, to living alone in an apartment, trying to get back to reality — my “new” reality. It was definitely a struggle dealing with classes and finals while also going in for monthly doctor visits and anticipating any signs of GVHD. The medicine to control GVHD also weakened my immune system, so I had to be very careful not to get sick. I wanted to be out with my friends doing normal senior year activities, but I had to accept that my life wasn’t “normal” anymore, and I needed to make the best of it.

With that motivation in mind, I decided to train for a half marathon with Team In Training to help raise money for the Leukemia and Lymphoma Society (LLS) in 2007. I definitely would not consider myself a “runner,” but I wanted to get involved and give back. I ran to prove that anything is possible, even after a bone marrow transplant. With the help of friends, family and supporters, I raised over $8,000 for LLS and was the top fundraiser for the North Texas Chapter. I crossed the finish line in May knowing that I had a made a difference. I also crossed a finish line in my survival — I had reached two years in remission from my disease, which is a considered a HUGE milestone in survival after a transplant.

I participated in the 2010 Big D Climb benefiting LLS. I served as captain for my team, “Regulators: Mount Up!” The event is a 52 flight (1,040 stairs) climb up the Fountain Place building in downtown Dallas. My team and I had so much fun, and we were among the top fundraising teams. The opportunity to raise money to help support the LLS mission and have a great time in the process was so fulfilling. Almost 5 years after a life saving bone marrow transplant from an unrelated donor, I was reaching the top of 52 flights with my sister and a great team of friends by my side! My team and I have decided to take on the challenge again this year and I will be climbing as the event’s “Honored Hero.”

Over the last year, I have struggled with really “getting back to normal.” Even five years later, a day doesn’t go by when I forget that I had cancer. I decided to get involved with the Cancer Center at Baylor through volunteer work. I was asked to help Baylor start up a support group for young adults and have enjoyed being involved. I’ve found that there are not a lot of resources for young adult survivors or patients. I hope to help make a change in the right direction where this is concerned. As a young adult going through treatment, I remember wanting to shut off any emotions and only focus on my treatment. I used that as my survival tactic for many years. I understand now that you need to cope with your cancer emotionally too, and I would love to help young adults with those issues. You lose much more than your hair when going through cancer, and as with any loss, you need to grieve.

I do not want cancer to define me, but on some level it always will. I have to accept that and acknowledge that I have experienced something that most people my age haven’t; however, it doesn’t have to be a bad thing. When I look back at my treatment and all that I have accomplished in the last 5 years, I am proud and forever changed. My experience with cancer has made me a fighter, in more ways than one!

My name is Alex Anne Agnor, and I am a five-year leukemia survivor.

Category: Faces of Cancer