Meet Carrie ~
I remember feeling so weak that I didn’t want to hold a glass of water or walk across the room. I was consolidating tasks at work, so I didn’t have to get out of my chair as often, I was bruising from the smallest bump of flesh and hearing over and over; Carrie, are you okay? Carrie, you look tired, Carrie, have you been to the doctor? I finally admitted that I shouldn’t be feeling so weak and tired all the time and made an appointment with my family doctor in the fall of 2008. In the back of mind I was thinking “leukemia” – my maternal grandmother had passed away from acute leukemia. Do I have leukemia?
After a few visits with my family doctor and blood work, I was referred to a hematologist/oncologist for Macrocytic Anemia, a condition where red blood cells are larger than normal and insufficient in number. At my first hematology oncology visit I was asked if I was an alcoholic or had ever been an alcoholic or a drug addict. Rude, I thought, while answering ‘No’ to each harsh question. After a year of visits, labs, biopsies and a visit to IU Simon Cancer Center for a second opinion, I was told it was definitely T-Cell Large Granular Lymphocytic Leukemia. I was told it was rare, especially under the age of 60. I was told it was not curable, but that it was treatable.
I was told my reoccurring yeast infections were a result of my body not being able to fight the infections. I was given hard to understand information that showed my life expectancy after diagnosis was ten years, but that statistic didn’t necessarily apply to me because I was young. I tried to find more information online, but there wasn’t much to find. I called a cancer organization and the person I spoke with had never heard of LGLL, and could only direct me to the same information I had already found. It was hard to explain to other people, not knowing exactly what it was I was dealing with. Since then, thankfully, more information has become available and this Foundation has emerged. I am now part of Dr. Loughran’s LGLL Registry and the LGLL Foundation’s support group. What a blessing!
Since my diagnosis I have continually been treated with oral chemotherapy. It is keeping me stable, enough so, I have been able to continue to work full-time and maintain normal activity. The constant monitoring doesn’t allow me to stop thinking about the leukemia – there’s always another blood draw or oncology appointment coming up. This blood cancer fluctuates a lot, and just when you think you may be going into remission, you have blood work that shows otherwise. It is definitely a roller coaster, but after a while you let go of the safety bar and put your arms up in the air and just enjoy life. There is much to be thankful for. I have a doctor who genuinely cares about my emotional and physical health, I have friends, family and faith, and I am contributing to research that is going to find a cure someday!
2/20/15 – Auburn, Indiana