Katie C. on September 29, 2011
I was Diagnosed with:
CML- Chronic Myeloid Leukemia
Employed/Long Term Disability
Type and Description of Treatments:
First year and a half of treatment was Gleevec. Last 3 1/2 years was Tasigna. My body became immune to both drugs and I've relapsed twice. Had Leukopheresis, Recently just started Sprycel. Buying me time to find a match for a BMT.
How do you feel today?
I feel tired, drained and worn out. I have bone pain and crazy body aches.
Since the diagnosis, what has changed in your life?
So much has changed in my life since being diagnosed, my plans, my friends, my lifestyle, my outlook, my daily activities. But I am thankful everyday of my life for being able to smile and appreciate who and what I have.
What is going well for you right now?
Right now I have a few things going well. My relationship with my family and friends.My relationship with my boyfriend. My money situation, work, and the fact that I can take care of myself :) My ability to volunteer and raise so much money for cancer and be the match!
What is not going well for you right now?
What is not going well for me right now is, I REALLLY need a match. Im really scared with this new chemo because it's only a matter of time before it stops working then I have nothing. Also this new chemo is kicking my butt. It sucks its literally killing me. But I push through and fight my way everyday! & some of my relationships struggle because I have a hard time and shut people out and dont communicate and include people in my daily life.
What has been the most challenging thing about having cancer?
The most challenging thing about having cancer would be a few things. One being that you can never plan anything, you never know where you will be in 6 months to a year so its frustrating. Also Insurance & meds are always a pain. My relationships with people have been challenging and work and disability have been challenging.
When difficulties overwhelm you, where do you go for support?
I go to planetcancer. My cancer friends. My family, best friend, boyfriend. Anyone I trust or I just read and watch videos & cry.
How have your long-term goals or life goals changed since diagnosis?
It has all changed. Nothing is the same & it won't ever be. I just take each day as it comes.
What is your work arrangement right now? What are your hours?
I work Mon-Fri 8am til about 2 or 3 pm. I am also on disability. Im on a special program that helps me work for a certain amount of time.
Since the diagnosis, what has changed in your work life?
It is very hard to stay focused and my body is sore and I struggle so much with body pains and aches.
What has helped you continue to work the most?
It gets me out of bed and gives me motivation to keep busy and stay focused.
What advice do you have for others trying to work through treatment?
Take it easy. Do something you love so that you really want to get up everyday. Find motivation in work and stay focused.
How have you dealt with any side effects of treatment?
Yes, lots of side effects.
If "today's you" could give advice to "day-of-diagnosis you," what would you say?
I would tell myself that what's ahead is going to be super painful but the love & support you find that people have for you is unbelievable. Life is too short and to enjoy and appreciate the little things. Love like crazy. Stay motivated and don't be scared to be scared and upset.