Saturday, October 4, 2014

Survivor vs Fighter: Let Us Light the Night

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?

Friday, October 3, 2014

Light the Night Gratitude

I have never been a great fundraiser; I used to cringe every time that my kids came home from school with a new one. We have sold candles, cookies, pizza, magazines, wrapping paper, Christmas cards, stuffed things, pretty things and scary things; all things, which I could have done without! I always wished I could simply donate the full amount directly to the cause, without having to add something to my shelf, or my waistline!

Since being diagnosed with leukemia three and a half years ago; I have found myself the recipient of many generous acts of kindness; both spiritual and tactile. This has inspired me to become a better fundraiser and to find a way to give back.

My first effort at fundraising was three years ago; I joined Bricks 4 the Brave in collecting Lego’s and Duplo’s for children that are ill, and often face long stays in the hospital; knowing that these sets of Lego’s would help to distract, entertain and put a smile on a child’s face. I was shocked at the support that I received and have been able to donate several hundred boxes of Lego’s and Duplo’s,  to the Boise and Phoenix Children’s Hospitals; once again, with the generosity of so many! This is a fundraiser that is very close to my heart.

This year, I decided to also tackle the Light the Night Walk fundraiser, which is put on by the Leukemia & Lymphoma Society; I had doubts, many doubts that I would even be able to raise a nickel for this cause. Like I said before, I am a lousy fundraiser and full of self-doubt! What I did not realize was how many generous people I know. I started the fundraiser tentatively, in high hopes of raising $500. I never even dreamed that we would reach that goal!

Thanks to so many, we reached our original goal in record time, so we decided to trust in all of you, and raised our goal to $1000. Shockingly and gratefully we reached that goal, too. We took one more chance and raised the goal, once again, to $1500; and guess what? Yup, we reached and exceeded that goal, too! As of the walk yesterday, we raised an impressive $1605! None of this would have been possible without all of you! Our heartfelt thanks go out to our many, many supporters; friends and family alike!

We couldn't have done it without all of you, and we are truly grateful. My belief in the generosity of others has been lifted to the moon and back, and witnessing the support of so many makes my heart swell with joy, and trust that someday, I will be cured!

Thank you so much for your donations and continued prayers and support. With people like you behind me, cheering me on, my fight becomes fiercer and my battle less burdensome; thank you for helping me carry my load!

With Sincere Gratitude,
Michele (and Joe)

Bricks for the Brave!!