After fundraising and walking in
my first Light the Night walk for the Leukemia & Lymphoma Society, I must
say that I have mixed emotions. When we went to check-in and pick up our t-shirts
and lanterns a few days before the walk, I realized that I did not fit into any
of the three categories offered: Supporter, In Memory, or Survivor.
As a person that has chronic myelogenous leukemia, I want
nothing more than to be what I consider a Survivor. To me, a survivor is a
person that has faced cancer, endured treatment and succeeded in kicking cancer’s
butt to the curb. To me, “survivor” implies that I have faced the devil and
won; I have completed my treatment and come out on the other side; the Survivor’s
side.
Now, I do not wish to sound ungrateful,
since I am very fortunate to have treatment available to me which allows me to continue
to survive, but that treatment is not
a cure; it is a daily dose of really potent medication, which comes with its’ own host of side effects and
risks, and is not the be-all-end-all. Not to mention the fact that my type of
cancer, CML, can stop responding to the current treatment, whenever it chooses
to rear its’ ugly head. I am still holding out for a “true” cure; I am holding
out and helping to raise funds so that I too, will someday be able to carry the
“survivor” lantern and truly be “cured”; a true Survivor.
Until then, I consider myself a “Fighter”!
I fight every single day to keep my CML under control. This past year, I have
gone from an undetectable state, back to
a detectable state, with numbers higher than what is considered “optimal”; what
this means is that I need to start fighting a little harder. I need to be more aggressive
in my treatment, in order to try and turn this upward trend around.
Thus far, the aggressive treatment
has resulted in a case of pneumonia and pleural effusion, forcing me to abandon
all treatment for seven days; always
a scary, but necessary option. I will just have to wait until my next PCR to
see how this complication has affected the burden of leukemic cells in my body.
So, needless to say, being a survivor in my mind means not having to be
monitored every three months, and in treatment for the rest of my life; always
making adjustments to the treatment, based upon my three month test results.
After pondering my realization
over night, I decided that I was not the only person in this boat; I am certain
that there are many other walkers that are still in treatment, fighting every day.
Since I feel that this walk exists to raise money for research for a cure, shouldn't
current patients be represented by their own t-shirts? Shouldn't other walkers
be able to see that their donations have cured many, but that there are many
more, that are still praying and hoping for a cure?
Those of us with chronic leukemia
and those fighting every day in treatment for other type of Leukemia and
Lymphoma are not yet “Survivor’s”. Fact
of the matter is, some of us will make it and some of us will not, and to be
lumped into the Survivor category just doesn't seem quite right. Shouldn't we
be represented as the Fighters that we currently are?
Anyway, I went to the t-shirt shop
and added (Fighter) to my t-shirt, right underneath Survivor. Despite having
(Fighter) on my t-shirt, I was still bombarded by other “white lantern-ed”
walkers. Guess what their first question to me was, over and over and over? Their
first question to me was, “How far out are you?” Of course, I had to reply, “I
am not out, yet; I am still fighting.
How far out are you?” I have to tell you that the look of joy and accomplishment
on their faces, made me want a cure more than ever. I was so very happy for
each and every one of them, but I have to admit that I was a bit envious, too. By the end of the night, I was actually weary
of showing my “happy” face, and trying really hard not to let the fact that my
CML is not in a great place at the moment, dampen my spirits.
Of course, looking around I was reminded
how truly grateful I am, that I was still here surviving, and not being
represented by a gold lantern (in memory), but there is a place in my heart
that remembers all of those we have lost to CML, just this past year alone. I was walking as a
Survivor, and my husband was carrying a Gold Lantern for Cheryl Hay, Michael
Cranford, Millie and Danny Eiler, just to name a few. I love what Light the
Night represents, but I also feel as though those of us that are still fighting
the good fight, need to have their very own category.
What do you think?