 |
| 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!
No comments:
Post a Comment