"You have cancer"--three of the scariest words a doctor can say. Three years ago, my doctor said those words. Well, being a doctor, he was more specific: "You have chronic lymphocytic leukemia," were his exact words.
My journey with cancer had really started a year earlier, unbeknownst to me. I had gone to my internist for my annual check-up. When the results from my blood work came back, they showed that I had anemia and my white blood count was abnormally high--about 17,000 (normal is 4500-10000). The doctor told me to repeat the blood test in a month to see if the results had changed.
I'm not exactly doctor-phobic, but I don't really like going to the doctor all that much and I don't always pay enough attention to my own health. The only reason I even go for semi-regular check-ups is that the doctor won't refill my thyroid medication without them (and I feel pretty badly if I don't take it)! So, of course, I thought I would solve everything by taking some iron pills. I was busy at work and didn't go back to have my blood retested. A year later when I went in for my check-up, my doctor asked what I had done about the results. "Nothing," I said. He immediately ordered a retest.
Not only was my white blood count not lower, it was higher--now it was 23,000. The one small bright spot was that I was no longer anemic, thanks to my taking iron. My internist immediately referred me to an oncologist. I was horrified! Why was he sending me to an oncologist? Surely a high white blood count didn't necessarily signify cancer!
Now terrified, I went to the doctor's appointment, where they took an alarming amount of blood right off the bat. Then I met with the doctor; he wasn't really encouraging. The two options that he gave me were leukemia or lymphoma--in other words, bad or worse! He would send my blood to a lab to have a test called a flow syometry done. Then, depending on what that test showed, I might need a CT scan.
It had taken two weeks to get the appointment, and it took another two weeks to find out the results. Those were the longest weeks of my life. The two weeks after meeting with the doctor were awful. All I could do was cry. To make matters worse, none of my best friends were in town. Martha was in Seattle, Nicolas was in China (and didn't even have phone service), and Kris was in Oklahoma. Thank God mother was still alive! Because she was a registered medical technologist, I had her go with me to the appointments so that she could translate any medical jargon I didn't understand.
The doctor called and told me to schedule a CT scan--so then I truly panicked! The blood test had obviously showed something! Two days after having the CT scan, mom and I went to meet with the doctor again. I remember sitting in the examination room thinking that my life would change irrevocably, no matter what the diagnosis was.
Honestly, when the doctor told me I had CLL, I was so relieved I almost fainted. CLL was definitely the better of two not-so-great choices. According to the National Cancer Institute, CLL is when "too many blood stem cells become abnormal lymphocytes and do not become healthy white blood cells. The abnormal lymphocytes may also be called leukemia cells. The lymphocytes are not able to fight infection very well. Also, as the number of lymphocytes increases in the blood and bone marrow, there is less room for healthy white blood cells, red blood cells, and platelets. This may cause infection, anemia, and easy bleeding." This definition explains why I had anemia, as well as a high white blood count. The doctor told me that I would need to come in every three months to have my blood tested and get checked. When I told my friend Martha, she shouted "Yay, you have leukemia." Her husband Greg said that was the weirdest thing he'd ever heard anyone say. It's all about perspective!
In the three years since, I have been extremely lucky in my diagnosis. The worst side effect of this disease is that I cannot fight off infections (when I get sick, I get really sick, and whatever it is won't go away--hence the pneumonia of several weeks ago). I also get really tired. I can work and go and bustle about, but then I'll pay for it. Five hour naps are not uncommon. I have since learned that it is good to be informed about your medical conditions, but the Internet is the devil. After learning my diagnosis, I did some reasearch on the Internet and learned that they average life expectancy after a CLL diagnosis is six years. Of course, what I failed to take into account is that most people who get CLL are 60+. My white blood count has ranged from 21,000 to 33,000--meaning it's still way high. You know how yucky you feel when you're sick. Part of that is your body fighting the infection by raising your white blood count. I feel that way all the time.
After learning what I had--after the euphoria of not having lymphoma wore off--I got depressed. I worked through it to some degree, and now I try not to overthink things, although CLL is a constant presence. I still panic when I have to have my blood tested. I wait for the results every time. When the doctor asks me if I have night sweats, I panic. Of course, I'm nearly 50, so I can think of at least one other reason to have night sweats, but I still worry.
I will never be free of the disease, but I am finding that I can live with it!