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)

Friday, September 26, 2014

Sprycel and My Left Lung; Who Do I Choose?

Apparently I am not the only one dealing with a hacking cough and shortness of breath, so here goes; a few weeks ago I began my yearly hacking. For some reason or another, I always seem to get a good bout of bronchitis around August, September or October; this usually occurs in conjunction with a mild case of pleural effusion.

Typically my oncologist prescribes Advair and Albuterol to help alleviate the symptoms and puts me on a Sprycel vacation, until I feel better; this usually takes a week or so. This year, since I actually have a “doctor” in town, I thought that I should go and see her, and have her assess my condition. Last week she confirmed that I had bronchitis, with reduced breath sounds in my left lung.

Being the totally thorough physician that she is, she put a pulse oximeter on my finger and walked me around her office; and then proceeded to tell me that my oxygen levels dropped significantly and that I needed to stop dancing, and go home and rest! She gave me a breathing treatment and confirmed that my breathing was “better”, so I promised to “rest” after teaching three hours of dance class that night!  She also said that if I was not better in one week, to have a chest x-ray.

Fast forward one week and I am still hacking and feeling like crap, so I get the chest x-ray. Now, I must preface this with “I LOVE Boise, and my doctor!!” Within 10 minutes of my chest x-ray, the doctor was on the phone telling me that she saw a minor effusion, but thought I might have pneumonia brewing and she wanted me to start on an antibiotic immediately.

I told her I was in the Costco parking lot and asked her if I could pick up the antibiotic there. By the time I got out of the car and walked to the pharmacy, the order was in the pharmacists hands; now that is efficiency at its’ best!

She prescribed azithromycin because of my many allergies and sensitivities, and after talking to the pharmacist, I decided to stop the Sprycel until I talked to my oncologist, as it has a moderate warning of QT prolongation, when taken at the same time.

So now the dilemma begins; I get home around 11 pm and email my oncologist; he replies at midnight that he does not believe that I have pneumonia and that she is just seeing the effusion. He agrees that I should not take the azithromycin and the Sprycel at the same time, and does not think that I need the antibiotic. I go to bed frustrated and confused! Lol

The next morning I page my oncologist to discuss my dilemma, this is how the story goes; “Michele, you did not mention having a fever, and you have had this before. I believe that you are experiencing side effects to the higher dose of Sprycel. Pleural effusion “looks” like pneumonia; I see it all of the time.”

Me: “But I do feel like crap, am coughing like crazy, and short of breath.”

Him: “Yes, that is common with effusions; they can create friction between the lung and the outer sac causing coughing, shortness of breath, etc. I can just about 100% guarantee that you do not have pneumonia, but you do need to go off of the Sprycel until these symptoms improve. I have no objection to the antibiotic; you and your doctor can decide what you feel is best regarding that, but I do not think you have pneumonia. I am afraid however,  that you may not be able to tolerate this dose of Sprycel and we may have to consider switching to Tasigna.”
Me: “Noooooooo, I will be fine on Sprycel as soon as I get over this bronchitis!”
He chuckled and then said that he wouldn't make any changes until my next appointment (in December).

So, here I once again have to decipher what is best for me; one doctor says this and the other says that. The problem is that I trust both of them and that they both have valid points; I do however believe that my oncologist has far more experience with the whole PE portion of the equation, and since I have not had fevers to indicate infection, I am leaning towards his explanation. But, with a strong desire to get over this and back on the Sprycel, I figured that since I was off the Sprycel anyway, I would go ahead and take the antibiotic as a precautionary measure. Since I am so anti-drugs; this was a difficult decision to make.

Conclusion: It has been two days off of Sprycel and two days of the 3 A’s: Azithromycin, Advair and Albuterol!  I am feeling better, but that could also be due to the fact that I am not running around or dancing and am doing little more than sitting on the couch!

Goal: To kick whatever the heck I got going on and get back on Sprycel so I can kick some more CML butt!

Oh, the dilemmas of CML….

Bricks for the Brave!!