Meet Heather ~
I was 19 when I first started getting sick. It started as a pain in my left side that was so persistent that I wound up in the emergency room. After lots of testing, the doctors wrongfully assumed that I either had mono or was being a hypochondriac. I was sent home and told to come back if the pain worsened; unfortunately it did. The doctor who was on the ER floor retook my blood work, and became incredibly worried. My white blood cell count had plummeted, and my spleen was enlarged. He wasn’t certain, but he sent me to the cancer center.
After months of blood work, an excruciating bone marrow biopsy, pet and cat scans, my Hematologist informed me that I had cyclic neutropenia, and not Non-Hodgkin’s as we had feared. The cycling was manageable. Livable, even.
Since I was so young, I was a bit naïve in my situation. Despite my awareness and research into how rare Adult Onset Cyclic Neutropenia is and how weakened my immune system was every month, I ignored the warning signs. I stopped visiting my Hematologist and figured I was untouchable. Within a state of several years I was admitted to the hospital twice for infections, and every three months I was put on antibiotics. It became normal, and my work and schooling were severely affected because of it.
In the summer of 2012, I developed a strange and itchy rash on my legs. Despite several rounds of antibiotics, and corticosteroid injections nothing was working and I was advised to see a new Hematologist and luckily I did. When I saw the new Hematologist Oncologist I gave her a brief outline of my history and she agreed that I likely had Cyclic Neutropenia but wanted to find out why my platelets were continually low. Several months of blood work every week and then we would discuss further.
Things were cut off suddenly when in October I developed pneumonia and needed an emergency appendicitis. After my doctor found out she suggested a bone marrow biopsy sooner, specifically on a date when I was cycling. It was scheduled for the 1st day of January, 2013.
I remember very clearly the moment my doctor handed me the results to my bone marrow biopsy. “It could be Leukemia. But it’s not a Leukemia that you think of.” My bone marrow was highly hypocelluar for my age, meaning that there were far less cells in it then there should’ve been. I also had an increase in Large Granular Lymphocytic cells. “We need to wait for six months until we can actually classify it… Sometimes LGL Cells can appear if you’re sick and since you’re young, you don’t fit the usual age group for LGL Leukemia. In the mean time I suggest a second opinion and we’ll run some other tests.” For being a doctor in a smaller community, in a less populated state that doesn’t have the best health care, I was extremely lucky to have a competent doctor.
Naturally, as soon as I got home after that visit, I googled LGL Leukemia. There was barely any information and most of it was confusing medical jargon in scholarly articles that I didn’t understand. It was frustrating to say the least!
So, after testing and testing, and testing, I was officially diagnosed in July, at age 24 with T-Cell Large Granular Lymphocytic Leukemia. A month later I was put onto treatment as I had become dependent on Neulasta to not get sick.
Since being on treatment, I have had the fortunate ability to meet with Dr. Loughran and been placed on the LGL Leukemia registry. I found out a wealth of information from him in my visits, and I understand that I will likely be on treatment for the rest of my life unless a cure is found and I have a higher risk of the Leukemia turning acute for me, due to my phenotyping and my age.
Often times, people will tell me how strong or how brave I am but I now know this illness and I know that I have it much better than others. I have had to quit school as I couldn’t keep up with 12 hour days, and I can no longer work because of the fatigue and lack of schooling for a job that allows me to minimally interact with people. It’s difficult to not get caught up in it sometimes, but I am so incredibly thankful for my family, my partner, my friends, my doctors and my online LGL Leukemia family. The Leukemia has been a blessing in disguise – I find myself less caught up in the smaller things and instead focus on the larger picture. Things taste sweeter, air feels clearer, and I love being able to just let the universe work as intended.
If I could offer any advice to people going through a difficult illness process (from testing, to diagnoses, to treatment), it would be to hang in there. It’s an extremely rough road and not everybody is going to understand but you above all else, know what’s best for you. Hang in there, and keep your head up!
07/1/2014 – Santa Fe, New Mexico