CML was completely unexpected. During routine blood work, my dermotologist found that I had a very high blood platelet count. He suggested I go see my primary care physician, who then recomended I see a hematologist. My platelet count was in the millions, and kept increasing (the standard amount should be 300,000-400,000).
I went to see the hematologist, who was located at the Cancer Center downtown. I didn't think I had cancer. I went with my sister, and a man from the American Cancer Society came up to me to tell me about their support options. I replied, "oh, I'm just here to see a hemotologist" and my sister and I shared a giggle that he thought I had cancer. All the people at the Center were older, much older. When I went to get my blood work done, a lady went to my sister and told her "it gets better". My sister is a physician assistant, but even she was a little nervous by the time I got back to the hematologist. But I still did NOT think I had cancer.
At the appointment, the hematologist looked at my blood results and my platelet count was even higher than before. He told me that he thought I had a blood marrow disorder, and he mentioned CML but told me he's pretty sure I don't have it because my white blood cells were fine (typically with CML, your white blood cells are the high ones, not platelets). He then told me he wanted to do a bone marrow biopsy. I could either come back and get it done, or I could do it then and there. I opted for the latter. I was already there, might as well get it done and figure out what is going on!
He and another doctor kept talking about taking my bone marrow like it was going to be excruciating. I don't think I typically feel much anxiety, but when the doctor started talking to me about taking my bone marrow, I felt my face flush, my head get light, and my eyes start to tear up. I really wanted to be brave and strong, but it was really difficult. I kept repeating to myself, "don't think about it, breathe, don't cry." The doctor asked if I wanted to stall it by going to the bathroom. I went, and kept just trying to breathe and thing about something, anything else so I wouldn't freak out. I kept asking God to help me.
Laying on the table, I just kept trying to relax and breathe and tune out what was going on around me (which was hard when they kept asking me questions). But what really helped was Disney. I kept thinking about Princess Aurora and her cottage in the woods and dancing with her forest friends. It helped a lot. Disney is my happy, safe place - I think a lot of people don't understand my connection (as a 26 year old) to Disney. But this experience summed it up. It comforts me. It transports me. That's why, after 7 years, I continue to work at Walt Disney World, even though I have a "big girl job" back home.
The biopsy turned out to be much better than expected. At one point, the doctor tried to break through my bone where there wasn't any numbing agent - that wasn't fun. But once I was given another couple shots in that area, it was fine. Much better than the horror they made it out to be. I was so overwhelmed with everything that day though, that I was upset for hours afterward.
When my results came back, I went back to the cancer center. My hematologist sat me down and told me I have CML. He then talked about how wonderful the new drugs are in helping people with CML. He decided to prescribe me Sprycel. It didn't hit me until later that I have cancer. My hematologist is now my oncologist. I will likely be on medicine to treat my cancer for the rest of my life.
But I am strong. I am young. If there is any kind of leukemia you have to get, you want CML. The new drugs are miraculous. I might be able to see improvement in just 3 months. The vast majority of people with CML survive. All I can do is take it one day and one blood test at a time. It's a part of me now. It helps make up who I am. But it doesn't define me and it will not conquer me. It's just the beginning of another chapter in my life.
dededos
germansingergirl
blakekathryn
baratheonpilled
izzy806
annaxmalina
theartofmadeline
yousharknotpass
