Thursday, February 9, 2012

My One Year Leukemia Anniversary; I Am Still Kicking!


Life is Magical!

Today marks 365 days that I have lived, knowing that I have chronic myelogenous leukemia. I am certain that I actually had this cancer prior to one year ago; I just didn’t know it. It is funny how some memories in life are so vivid and how others fade away. Much of the past year has turned into a bit of a blur, but where I was standing and what I was doing, at the exact moment that my doctor told me that I had leukemia, is permanently imbedded on a brain cell that will never forget.

I was visiting my folks in Palm Desert, California. I had had a doctor’s appointment the previous day; I had had blood work drawn, but did not expect anything out of the ordinary. My phone rang as I was getting ready for the day. It was my doctors and he said, “Michele, I don’t really know how to tell you this, but I am sorry to say that you have leukemia”. After a brief silence, I said, “What do you mean, I have leukemia?” He said, “You need to go immediately to the emergency room, Dr. Camacho will be waiting for you there”.
Needless to say, I was shocked and confused. Fortunately for me, the type of leukemia that I have, chronic myelougenous leukemia, which happens to be a rare form of the disease, is currently managed through a type of medication that blocks the chromosomal switch, which is characteristic of this type of blood cancer. Many people refer to this treatment as oral chemotherapy, but from what I understand, it is actually a tyrosine kinase inhibitor. This drug has kept me alive for the past year, and I intend for it to keep me alive for many more years to come.

During this past year, I have struggled and triumphed in many ways. Living on a day to day basis with cancer, totally sucks! The alternative would be even worse. I hate how the medication makes me feel and it has been quite an adjustment, learning to live my life in a completely different manner than I used to. Never knowing how much energy that I will have, and whether or not I will feel well enough to participate in whatever activity that I may wish, has certainly been a huge adjustment. I have always been a person, on the go, with little regard to limitations.

Limitations are no fun at all, my heart and soul say go, and my body says, I don’t think so. My hair has grown back in with a life of its’ own; it is now curly and out of control. My face I barely recognize in the mornings, due to my puffy, swollen eyes. I feel as though I have aged ten years, in one. It’s not enough that I should feel like crap, but do I really have to look like crap, too?

I am still at a point where I require at least ten hours of sleep a night. The actual process of waking up every morning is like emerging from a deep coma. My mind awakens and literally has to plead to wake up my body and force my eyes to open. I feel as though I have been drugged and just cannot regain full consciousness. It is the strangest sensation and I often wonder if that is what true comatose patients experience.

On the other hand, and the brighter side of things, my last PCR test, a blood test that measures the amount of disease on my body, returned “undetectable” which is the best possible result. It means that my BCR-ABL counts are in the negative range, and that the medication is working. Of course, I was hoping for a reduction in my medication when this happened, but my doctor quickly informed me that we are still dealing with leukemia. So, maybe, if my numbers remain in the negative, throughout this year, I will be able to reduce my medication next year. My doctor believes that the quicker that you reach this goal, this better your long term prognosis is. Keep the prayers coming for continued positive results and that my cancer does not find a way to become tolerant to this medication.

Another positive aspect of this cancer is that it has pushed me back into the creative writing side of my brain, which has been squelched by all of the other physical creative outlets that I have been focusing on for many, many years. It seems that I no longer have the energy it requires to tackle many of those other, more physical, creative activities. I am still dancing, but have had to cut back drastically. I am hoping to begin to rebuild some of my stamina and strength this year.

The most rewarding and cherished thing that has resulted from this disease, has been the outpouring support and love from my family, friends, and yes, even strangers. This support has come to me spiritually and monetarily and I will never be able to thank each and every one of you enough. I have been astounded by the generosity, kindness and support from so many. It really does my heart a world of good, and gives me the courage and strength to face this leukemia every day. Hopefully this year, I will be able to do more for others who are in need.

One year down, many, many more to go! 

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Bricks for the Brave!!