It has only been nine weeks since I have been diagnosed with chronic myelogenous leukemia, and what I am quickly learning is that leukemia doesn't always play “nice.” I am not sure that I am ever going to get used to that fact.
Don’t get me wrong, my life has been far from “charmed” and I have had many, many hiccups throughout that have been devastating and life altering; but this is different. The difference with living with CML I believe is that this cancer never really goes away; it affects your everyday life. It just lingers and continually screws with your life and your plans. And if the disease itself does not make you feel crappy, then the meds that you have to take do. The fact that it does not have an absolute ending point makes it a continual annoyance; at least thus far. Hopefully someday, I will live to see an actual “cure” and I can stop taking the meds that keep me alive; yet sap my energy and make me more susceptible to infection.
Between the side effects from these meds and the leukemia itself, I have begun to realize that I am no longer playing the game of life in quite the same way that I used to. I used to make plans and be able to keep them. I used to be able to fill my hours and days until they burst. I used to be able to do just about anything that I wanted; all without consequence. Those days are over; for now.
It seems that some days I forget that I even have cancer; it is those days that tend to send the reminder in. I was so grateful to be able to go to the dance convention last week, but this week has been a constant reminder that I did go AND that I had a great time. The good days allow me to forget; thus taking on the day by storm. The days that follow seem to punish me for doing just that. It just does not seem fair.
I have been painting our kitchen cabinets for over a month now; a project that shouldn’t have taken me any more than three days; and those three days included paint drying time. This project is now taking me months to complete. This dragging ass, not being able to make plans and commitments is not part of who I am. I wonder if I will ever get used to this different and annoying lifestyle.
I long for the days that I can roll the dice and play the card without having to pay a price. I want to make plans without wondering whether or not I will feel well enough to keep them. I want to wake up and do my daily routine and not have to spend the next day recuperating for doing a few loads of laundry, some gardening and making dinner. I want to go dancing EVERY Wednesday night; I mean come on, four and a half hours of fun a week is not too much to ask for. And most importantly I want to be able to make travel plans to go and see my grandchildren. Small things in life that I used to take for granted.
Ugh, don’t get me wrong, I am not ungrateful to be alive and I know that there are others out there that are in far worse condition than I am. I must say that I have empathy for anyone struggling in life, be it health wise or other issues, but I wish the same for them as I wish for myself; to be able to live life to its’ fullest. I will continue to make lemonade from my lemons, push through and pretend that I am well, and just learn to adjust to the fact that leukemia doesn’t always play nice! Enough whining for one day!
I am a'sister' living with CML (just had my 12 month aniversary)Your entry totally resonated with me as I too battle with the daily fatigue.
You expressed so many of my own thoughts and feelings that it's a bit scary but also affirming.Keep writing. T
Thanks for stopping by; it is always nice to know that others are going through the same things that I am. You are just ahead of me, I was dx in Feb. How are you doing?
Did you know that you are eligible for disability?