where-are-they-now[Editor's Note: Over the years Patient Power has heard from many patients and care partners. With our ongoing “Where are they now” campaign, we get an opportunity to check in and hear updates from Patient Power's amazing community members. Jamie shares with us her latest news. For previous conversations and blogs with Jamie, click the link(s) below.] 

Every morning, my alarm goes off earlier than I need to get up so I can get to the kitchen, plug in my electro-perk pot, slip back into bed, and reset the alarm for 30 minutes later.  When the second alarm rings, I get up, get my coffee and an assortment of breakfast treats for my two German shepherds, turn on the news, and sit for 45 minutes until it is time to shower for work.  This is my routine, and I keep to it on weekdays like a ritual.  I never really needed to follow a routine so rigidly until I began treatment for CML 15 years ago.  For those who have cancer, and who have been through jamie-white-dogtreatment, the term "chemo brain" is very familiar.  As the medication builds in your system and the days pass, you begin to notice forgetfulness, losing your train of thought, not being able to find the word that you want as you are speaking, and misplacing things around the house and the office.  For many, treatment is completed, and memory returns to normal.  For me, taking a medication to control leukemia for life, it is a fact of my day-to-day existence.  So sticking to my routine keeps things from slipping or being lost, and it helps me to start my day in a solid and strong frame of mind.  I write myself notes and can't say enough about the notes feature on my smart phone!  I do my shopping lists on there—numbers I need to remember, great songs I hear that I want to download—otherwise I forget them in minutes.  It is all part of the new normal living with CML. Keeping to a routine has really helped me to be consistent in my daily life.

jamie-beige-dogFour years ago, I had the honor of being interviewed by Patient Power to tell my story. It is truly unexpected to see the number of people whose stories have been told, and live with diseases, all over the world. At diagnosis, I felt singled out like I was the only one, which I believe is a common reaction. Receiving a diagnosis of chronic myelogenous leukemia in 2001 or before was terrifying as treatment was harsh and unreliable, with a bone marrow transplant being the only way for a cure. Now there are several medications called TKIs that, for the majority of us, control the disease, but we take it for life. So we go on, and we learn how to incorporate the effects of these meds into our day-to-day lives. Fifteen years ago, there were very few survivors of this disease, so there was no one for me to reach out to for help or advice, or just plain support and understanding. Now, with so many people thriving and living relatively normal lives, the network is enormous. Through social media, I have met hundreds of others like me, and there are thousands more signing up all the time. I began volunteering after a few years to let people know that I was doing fine and that they would likely be, too. jamie-duoNot the way I wanted to find my voice in this life, but it has been as beneficial to me as it has to the hundreds of patients I have connected with over the years. These last four years since I spoke with Patient Power have been so busy that without a smart phone calendar with alerts, I would miss half of the appointments and events I have committed to. Those little trills to remind me that something planned is coming up have become so familiar to me now. I can't imagine how I functioned without them. When I was diagnosed, I saw the future laid out before me in milestone events such as my son's graduation from high school, college, eventual marriage and fatherhood, which, of course, would mean grand-motherhood for me. It is those milestones that have inspired me to live normally and actively, and to not dwell on what is wrong with me. jamie-friendsWhere I once was a worrywart about money and unnecessary expenses, now I buy the concert tickets and go to all the movies I want to see. I buy the boots and the designer purse, and I enjoy every bit of them. Life is the here and now, not some day down the road. CML brought many changes to my life, but it doesn't have to change my lifestyle. You adapt, you find ways to work around the things that perhaps don't work as well as they once did. This morning, while driving to work, I dictated a note to myself about a song I heard on the radio that I love but would forget by the time I got to the office. That's just how it is, and that's okay. And now I am about to mark the second of the big milestones that have driven me for 15 years: my son will graduate from college in a few weeks. I am sure I will cry like a baby when his name is announced, and he walks across the stage to receive his degree. For someone who thought she might not be here to witness this day, this is a monumental occasion, and I can't wait! And then? We are off to the next milestone, and I probably won't need a reminder for that one.

Don't be defined by what is wrong with you but by what is right about you,

Jamie Pires

15-year CML survivor