When you live with a chronic disease like leukemia you have very heightened intuition. You develop a honed sense of self and learn how to analyze and differentiate between the little systemic bugs, chinks, and cliches that “normal” people face, and those that may be disease related. That skill becomes more advanced the longer you live with the disease. Ten years ago I would get confused over whether everything I felt was disease related or none of it was.
Today, I think I know myself pretty well and I feel like I’ve taken a more active role in my care and treatment this past year. I feel lucky that fitness has always been such a significant component of my life because my fitness level and perceived exertion has also proven to be a valuable and accurate barometer to measure my overall state of health. I’ve learned the difference between feeling exhausted from a great workout, and feeling exhausted from something just being off. I had some runs this year where my body just shut down. It stopped as if a switch was turned to off. A two mile run felt like a ten mile run and a five mile run felt like a marathon.
It was these runs, in addition to an elevated white blood cell count, and some much enlarged lymph nodes that threw the red flag for me and led me to my current treatment path. Most of this year, I felt disconnected from my body. My leukemia was making a move and waiting for my response. My response was an aggressive one. My response was full bore chemo (Bendeka) & monoclonal antibody (Rituxan) treatment plan that my doctor referred to as “the big guns”. There was no doubt in my mind that treatment was the right call. In fact it was me who initiated that notion. I knew I was “off” and needed to reboot. And while this treatment is highly toxic, it also has a very high success rate.
Since July I’ve been receiving monthly treatment. If you are reading this, you are probably well aware of that fact. And each treatment was filled with a series of ups and downs. There were some perfect days where I didn’t even feel like I was being treated with anything. And there were some hard days and nights where I felt toxic. There were days when I felt good enough to go for a run, and there were sleepless nights where nausea, fatigue, and excruciating pain or complete numbness of my arms took over. I would often sit in the chemo recliner and look up at the bags of clear fluid flowing into my system amazed at how something so seemingly innocuous could be so poisonous. A friend and foe at the same time.
It’s been a journey, but a positive one. I’ve gained a greater understanding of these treatment drugs and my body’s response. I’ve learned how to navigate and be patient with the roller coaster effects of this 28-day treatment cycle protocol. I’ve celebrated the little victories and buckled up for the turbulent turns. And I’m seeing great results. My blood work is aligning as it should and my lymph nodes have retreated to more normal size. And most importantly, I FEEL good. I feel like myself again. I’ll know next week at my check up if we are officially done with treatment but if my intuition is right – we’re done.