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Living With CML: A Personal Story
Out of Nowhere
Life is a pretty rude little thing. It never warns you when it's about to throw you a curve ball, and doesn't give you time to get ready before it tosses you a big, life-altering challenge. Take me for example. One minute I'm playing the sport I love, then the next I'm hunched over exhausted and gasping for breath. Twenty-four more hours and I'm being told for the first time in my life I have cancer. My whole life changed in a little over a day.
Not Knowing is the Worst
It all began on the afternoon of March 8, 2012. I was home from college on spring break, and the weather had reached that awkward phase between winter and spring where it begins to give brief flashes of the warm weather to come. This was one such day, and a friend and I decided to take advantage by putting up our net and playing some outdoor volleyball. We both loved volleyball and hadn't played for so long because of the weather. It was, in my opinion, a great way for great friends to spend a great seventy degree day.
At least, that is, until five minutes into playing I was too exhausted to continue. Of course, that could have easily been attributed to being inactive during the winter months. It was the large bulge on the left side of my stomach, however, that we could not ignore. We called it a day, my friend urging me to work on my endurance for the next time we played. I, on the other hand, decided to set up an appointment with my doctor. I had to figure out what was causing my exhaustion.
The next day i visited the doctor and told him my symptoms: exhaustion, lack of endurance, trouble breathing. He listened to them, but seemed markedly more interested in the bump on my stomach. After examining it, he excused himself momentarily, then returned with the other two doctors on his staff. By then I knew something serious was happening to me. I was being examined by a whole team of doctors now. The bump was my spleen, the doctors told me, and they wanted to have a blood test done to find out why it had swelled to such a large size.
After going to the local hospital and receiving the blood test, I was sent to the lobby with my parents to wait until the doctor called us to give his analysis. In about an hour, my mom's phone rang, and the doctor worriedly told her that the test had shown me to have a white blood cell count that was staggeringly higher than the typical count, while my red blood cell count was less than half its normal level. Now I'm an English major as opposed to pre-Med so I obviously had no idea what this could mean. I never in a million years would have suspected cancer.
I'm in a "Special Group" Now
When I found out that I had cancer, it was really nothing like I expected. My regular doctor had sent me to another hospital and doctor two hours away in the city of Hershey, Pennsylvania. I met with the doctor there, told him my symptoms and test results, and allowed him to examine me himself.
Now I had always imagined that whenever a doctor told someone they had cancer, it was always like in the movies. The doctor comes in with a serious look, puts his hand on the patient's shoulder, and solemnly says, "I'm sorry son. You have cancer." Instead, I actually found out by accident. A nurse came in to check my vitals every few hours and, as we spoke, kept mentioning that I was part of a "special group" now. Baffled as to what this meant, I asked and she responded saying "You do have leukemia, don't you?"
Naturally I freaked out and it took about thirty minutes for my parents to calm me back down. Cancer has been such a devastating disease in our society for so long, that even the mere mention of the word seemed to carry a certain fear-factor for me. The doctor delivered the official diagnosis: Chronic Myelogenous Leukemia, or CML, a less common form of cancer that affects the bone marrow, the part of the body where blood cells originate. The doctor immediately started me on a regimen of pills designed to bring my abnormal blood counts into line before beginning to treat the disease directly. After four long days and sleepless nights in the same hot bed, and more blood tests than I'd care to remember, I was finally sent home to begin dealing with CML on my own.
Getting Better: One Long Day at a Time
By the time I got home I was so relieved just to be out of the hospital that I was able to stop worrying about the disease inside me for a short while. To be honest, one of the worst parts of the whole process was just not knowing what the future would hold. Now there was a plan in place for the future, or so I thought. The doctor had placed me on a set of pills designed to lower the white blood cell count in my blood. Eventually I learned that this was just a short term solution to eliminate the threat posed by my high white cell count and enlarged spleen. There was still a lot more to be done for a full recovery.
But that was still in the future. Those first few months were rough. Between the weekly blood tests and constant lying around, I still had to get up-to-date on my college classes. Since I wouldn't be clear to live on campus until my counts had gone back to normal, I was left having to commute the hour and a half to my classes every morning. This was probably the toughest part for me. I was a college freshman, loving the experience, and it was hard to be taken away from all that for so long.
Fortunately, the drugs did their job and I began to show signs of improvement about a month after being diagnosed. I was now being treated by a doctor at my local hospital again, and he cleared me to return to campus.
Choosing the Right Drug
Once my blood counts returned to normal, I was able to focus on kicking my CML once and for all. It was time to begin taking a drug that would attack the disease directly. The doctor gave me the names of two drugs that would help me to reach each of the three stages of remission, hematologic, molecular, and cytogenetic.
The choices were Nilotinib, also known as Tasigna, and Dasatinib, more commonly known as Sprycel. Both had to be taken daily, had potential side effects, and would be extremely expensive. I opted in favor of Sprycel mostly due to the fact that Tasigna had to be taken on an empty stomach and would have to be scheduled around meals. Of course that left the difficulty of paying for an extremely expensive drug that I would be taking for the rest of my life. If you look below, you can see that we really didn't have any cheap options.
Commonly Used CML Drugs and their Prices
Fortunately, the drug company, Bristol Myers Squibb, was willing to help us out. Through a program called Destination Access my family and I were able to apply to have a shipment of Sprycel delivered to us each month for no charge. All we had to do was apply each year for the program. I am really thankful we were able to find help to get what I needed to get better. Without it, I'm not sure what I would have done.
Where it all led
These days, I just go about my business each day like an average guy. There is no more exhaustion or bulge in my stomach. In fact, my only reminder of the disease inside me is the small white pill I take each night around midnight.
It has been almost fifteen months since the day I found out about my CML, and I'm proud to say I have nearly reached the final stage of remission. So many people were involved in the journey, from family to supportive friends to the doctors and nurses who took care of me. I am thankful for every person who was there along the way and helped me to get through this.
With that said, I think what I've taken most out of this experience is that we are stronger than we think. Two years ago if someone had told me that in the near future I would have had leukemia and survived I would have thought they were crazy. But thanks to everyone who helped me, I was able to get through. And for that, I am more thankful than anything else.