1988 and beyond........

SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH!!

To kick off Childhood Cancer Awareness Month, below you will find the long awaited continuation of my first blog entry. After a lengthy hiatus and much comtemplation and learning, please check here for a new blog each day in September to promote awareness for Childhood Cancer. Most will be written by me, some by volunteers, others from professionals, survivors, parents, or siblings. All are individuals whose lives have been touched and forever changed by childhood cancer.

Part 2: As the ensuing days brought a total of 14 months of chemotherapy (including Methotrexate, Vinchristine, Bleomycin, Cytoxan, Dactinomycin, Adriamycin, Cisplatinin) and 5 surgeries, I whiled away the precious hours at home surrounded by love - and Nintendo! Too sick to attend 7th grade, a tutor was delivered to my door a few times a week. I excelled in academics, seemingly the only thing I had any control over.

Armed with a new Benetton book bag, a new outfit, and a strawberry blonde shoulder length wig, I attended Valley View High School on the first day of 8th grade! I missed the 2nd and 3rd days, as I spent them at Hershey Medical Center celebrating my final chemotherapy treatment! I returned to school on day 4, and never looked back. If I had, I would have seen my Mom and Gramma wiping their eyes as I entered the hallowed halls of learning, cancer free!!

Save a few nasty colds due to a compromised immune system, I sailed through high school. Proudly, I spoke at commencement in 1994, graduating with honors after serving as yearbook editor and attaining the title, through Future Business Leaders of America, of PA State Champion in Impromptu Speaking. My last truly carefree summer played host to a trip to California, before returning to academia at The University of Scranton. At Scranton, I was somewhat of a "legacy". I continued a long line of "Royal" students, which my paternal grandfather began with his graduation in 1935! I flourished on campus, serving as an orientation aide and resident assistant, before being bestowed with the Jesuit Community Award for School and Community Service at graduation in 1998.

May 31, 1998 was a melancholy graduation day - a day filled with promise, hopes, memories and tears. June 1, 1998 was my first day at my first "real" job at Scranton Counseling Center. It was undoubtedly hard, but what an opportunity for experience! Four years in, I started to feel sluggish, short of breath, dizzy, and gained 8-10 pounds per week. Difficulty grew to find clothes in my closet that fit, and my ability to walk distances was quickly shortened to 10 feet or less. After 6 months and several doctors, I was diagnosed with Dilated Cardiomyopathy. As pediatric chemotherapies are sparse, in 1988 I was treated with adult chemo at age 11. The very same chemo that saved my life had damaged my heart. My heart was functioning at about 30% off its capacity. After peeing out 42 pounds in 3 days (yes, I admit that I have fallen asleep on the toilet), heart transplant evaluations at Temple and Penn, and several weeks off of work, my heart was deemed stable. Miraculously, my heart stabilized further and regained some function. My heart will always be damaged, but it works hard enough to keep me quite active and quite happy! My second miracle happened shortly after the milennium in 2001.

Due to strenuous job requirements coupled with a 24 hour on-call component, I traded the Scranton Counseling Center for a 20 month stint as an Intake Coordinator at Allied Services. Another amazing experience with wonderful new friends ended in tears as I left in search of greener pastures with the Federal Government. September 2003 marked the beginning of my career at Social Security. As a Title 2 Claims Representative, I processed disability and retirement claims. This was, hands down, the most difficult task of my work life. In 3 years of training, I'm wagering that I studied enough to earn 2 more bachelor's degrees! I hit my stride as my 4th year commenced, and really began to feel as though I was making a difference.

On Sunday, February 17, 2007 I stumbled out of the shower around 10:30 AM. Feeling a little "off", I tried to comb my hair, but failed to remember what to do with a comb. My underpants lay on the counter, but I didn't recall what to do with them. Seconds (maybe minutes) later I stumbled out of my bedroom, and uttered my last word "help". I woke up 3 hours later in the ER at Mid-Valley Hospital in Peckville, PA, unable to speak, read, write, add, smile, or move my right side. Scared and frustrated, armed with only receptive communication, I was transferred by ambulance to Intensive Care at Community Medical Center in Scranton, PA.

3 days and one more ambulance ride later, I found myself in the Cardiac Special Care Unit at the Hospital of the University of Pennsylvania. After titration of coumadin (a blood thinner), physical therapy, speech therapy, and occupational therapy, I was discharged on February 27, 2007. Upon return home, reality set in with a short bout of depression, anxiety, and "why me's"? Throughout that, I strived for recovery to the best of my abilities, and returned to work at the Social Security Administration only 2 months post-stroke, albeit part-time. Throughout summer 2007, I felt somewhat sub-par; however, what was I supposed to "feel" like just 5 months after a massive stroke? On August 30, 2007, I left work and began the climb to my car, parked on floor 3. After completing 3 of 6 flights of stairs, I began to pray. Realizing that passing out was imminent, aloud I repeated "please God, let me make it to my car." My prayer was not specific enough. I did in fact make it to my car, but never made it inside, instead passing out next to my car. After regaining consciousness, I searched for my cell phone - of course to postone my dental appointment! My second call was to my dad. After his strong urging, my third call was to 911.

An ambulance ride delivered me to Mercy Hospital - where it all began (again)! Within 48 hours, on August 30, 2007, I again found myself at Penn, this time the proud owner of an internal defibrillator. I named him Charlie, like Charlie's Angels - he watches over me. His croney, Bosley, is a care-link monitor that sleeps next to my bed, recording data each night from 1-4 AM, then transferring the information to PENN weekly.

The last paragraphs have chronicled what some will, no doubt, call tragedies. I believe they are miracles. In fact, I believe that I am living proof that miracles actually do exist. God left me on this earth for a reason, and since September 2007, I have been hunting for that reason feverishly. As of November 30, 2007, I am officially retired from the Federal Government - initially a large blow, both economically and psychologically. Since then, I have realized it to be a gift, the ability to reinvent my life. I would not trade any experience that paved the way for retirement at age 31, and have no regrets, for they afforded me the opportunity to become the person I am today.

One year after Charlie was "born", my quest was completed. Hillary Clinton tells us that, "it takes a village to raise a child." I believe that it also takes a village to survive Cancer. NEPA is "my" village. Further, childhood cancer patients are not typpically treated in NEPA. Instead, they travel to New York, Hershey, Philadelphia, Danville, and Delaware, in pursuit of the best care possible. While there, they form a new "family" to aid in saving their young lives. At home, few understand what they are going through. That is where my non-profit, Cancertacular™, Inc, comes into play. Cancertacular™, Inc. became official on August 18, 2008. We are NEPA's neighborhood for childhood cancer. Our mission? No child should feel alone during treatment, and neither should his or her family. Optimally, no parent should have to choose between working to pay bills and accompanying their child for life saving medical treatment. Thus, all monies raised by Cancertacular™, Inc. remain in NEPA to support Golden Families, as gold is representative of childhood cancer.

What's next for me?? Medically, I honestly have no idea, as there are few childhood survivors who have lived longer than me. With a few of my contemporaries, we are traversing unknown paths. Paths that can be studied, affording prior mistakes to evolve into progress and pages in Journals of Medicine.

The moral of my story?? I am STILL learning, while surrounded by love and happiness. I have learned that attitude can make or break you. You need to be your own advocate. Please listen to that tiny voice when you have a concern! Above all, I know that I can handle whatever comes my way. For you see, I am a survivor!

Please follow the happenings of Cancertacular™, Inc. on Facebook at http://http://www.facebook.com/home.php?#!/pages/Archbald-PA/CancertacularTM-Inc/199555207023?ref=ts.

Fabulously yours,

Tina