MD Anderson Brain Tumor Conference May 2011

"Breaking Away"

My name is John Abbate.

I was a junior at Indiana University in Bloomington, Indiana. I was a "good" student majoring in secondary education...and was very involved in the Little 500 bicycle race...maybe you have seen the movie "Breaking Away"...well,it is sooo worth seeing.

One night in late February of 2007 I was at the library late again (class & riding my bike...etc cut into my day) I was walking from my car to my apartment, slipped on ice fell backwards & hit the back of my head. I did not think much of this,I kind of laughed it off and was feeling concussion symptoms, but not at all what was really going on. Feeling a bit woozy or concussed,I did not go to bed right away.

Waking up the next morning was not too bad...I had a headache, but I went along with my day. Legend exists among some family & friends that I rode like 100 miles, but that is BS...I rode 30 miles & felt better actually. Slowly, but surely the headache came back. Friday turned to Saturday & I felt weak...too say the least...I tried riding the bike,usually that was a form of therapy for me,well I rode a bit & finished an easy 15 miles,but felt awful. So, I wake up Sunday, I am really struggling by now manage a shower then I drove myself to the E.R. (I did not tell my roomies...sorry guys)

I have a few tests ran on me & long story short they had found a low grade astrocytoma on my brain stem,some of the cerebellum that had been growing for 6 or so years.  (Dr's always told me symptoms were sinus related) The walnut sized tumor was smack dab in my fourth ventricle. So, my brain was essentially drowning in CSF (cerebrospinal fluid) and I had two neurosurgeons saying if they did not operate within a week,I would possibly comatose & die. Anyway, the fluid that should have been draining was backing up because the fall had "jarred" the tumor blocking the CSF flow.

This is heavy stuff for a 22 year old.  Well, talk about a quick decision. I decided on a different Doctor @ Northwestern in Evanston, Ill.

March 2nd of 2007 I had surgery, stayed @ the R.I.C. (Rehabilitation Institute of Chicago) for almost 3 months. I came home June 15th of 2007 as an entirely different person...well, physically anyway. (be your own advocate, try not to be ignorant to warning signs, I kind of was) In August of 2008 I managed to get back to school @ a local campus...IU Northwest. Fast forward to December of 201, it has been a rough road to say the least,I am almost done with school and am already thinking about grad school(I am excepting donations...jj...ha) I have accomplished some pretty "cool" things in my wheelchair and I am just getting started/ trying to break away from stereotypes that disability is a "bad" word.

Top 10 Positive's of "That Damn Freckle"

It's amazing how a cancer diagnosis changes you... regardless of the outcome, it changes you. Now that I've shared the tough part of my cancer story, it's time to change my tune & focus on the good that's come from this crazy journey. Here are the top 10 positive's "That Damn Freckle" has brought to my life:

10) KNOWLEDGE... Cancer has opened my mind to learning. I have gained so much valuable knowledge since my diagnosis, not just about cancer but about coping, prevention, awareness, supporting, fundraising, research, networking, etc. I read more, I pay attention more to the news & current events & I confidently initiate conversations about cancer-related topics with friends & strangers. I have also become more aware of my own body which I hope & pray will allow me to maintain a cancer-free life. I believe I am smarter because of cancer!

9) APPRECIATION... I've always been grateful for my family, my friends, my abilities, my experiences, etc. But, since my melanoma, I have taken on a whole new appreciation, not just for all those wonderful things but for my life as a whole. The saying "take time to smell the roses" really comes to life for me now... I appreciate the little things so much more & I appreciate how they've made me who I am. When I can see the beauty in the everyday things such as a smile or song lyrics, it makes me appreciate the big things like my amazing family & friends that much more!

8) PATIENCE... Patience is a virtue, or so the theory goes. We live in a world of instant gratification with texting, facebook, etc & we have come to expect instant results. With cancer, there is no such thing. Waiting for oncology lab results, waiting for your next doctor's appointment, waiting for your friend's next cancer update... all of this waiting tests your nerves, your mood & your patience. I have learned that no matter how much I wish for these things to be resolved quickly, it's out of my hands & I still have to live my life in the meantime. This has forced me to enjoy the now & develop more patience in my everyday life, which is definitely a virtue!

7) COMPASSION... compassion (n): a feeling of deep sympathy & sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. When I got my diagnosis, the compassion I received from family, friends & total strangers was immense... it made me feel loved, protected & hopeful. That compassion has continued over the last 3 years, as I have been supported in my personal efforts to remain cancer-free, to fight cancer & raise money for Relay for Life & to spread awareness & support in the cancer community. That compassion has also increased my ability to be compassionate. I am surrounded by people I care about who are going through their own cancer battles & my heart is even more open & supportive than it's ever been. Compassion spreads like wildfire... it feels awesome to give & receive it!

6) THE ABILITY TO INSPIRE... Sure, I always hoped I would make an impact on the world at some point in my life, but I never realized that I could. Recently I received one of the most heartfelt emails from a family friend. She heard my melanoma story from my mom & told family & friends... as a result, her husband & many others became more aware of their skin, had it checked & were able to catch their skin cancer early. She said, "Because of you & your Mom I know that there have been many "ripples" of outreach... friends & family telling friends & family... lots of people have ended up getting checked, & lives have been saved. You are a true inspiration and I thank you for all that you do!!" That's one of many messages like that I've received... to make an impact on people from simply telling my story is very humbling & very rewarding!

5) INSPIRATION... Receiving a cancer diagnosis stopped me in my tracks... it made me feel scared, helpless, angry & weak. Even after I was pronounced "ok" by the doctor I still had trouble moving forward. Fortunately, through the last 3 years of cancer experience I have reached out, met new friends, joined support groups & been lucky enough to be around some of the most inspiring people... ever. I have watched friends go through much more difficult cancer experiences than mine & still come out on top. I have seen them shed light on even the most incredibly negative situations. Their positive attitudes, undying determination & utter strength have inspired me to discover those qualities within myself. Being around them & even just thinking about them throughout my day makes me work harder, smile more & even run farther... I'm up to 6 miles now! It's amazing what all that positive energy can do!

4) RELAY FOR LIFE... August '10 was my 2-year cancer-versary & I wanted to "do something" to help the cause. Relay for Life would be one of the most life-changing experiences I'd ever have. I bonded with friends & met new friends, celebrated my cancer victory & gained a sense of where I fit into the cancer world. I met the friends that would become my fellow Committee members this year... I had the opportunity to be the 2011 Relay Committee Survivor Co-Chair & it was such an honor working closely with our 100+ Survivors to help make their Relay experience special & unique. I am also incredibly proud to say I was a top 10 fundraiser, raising over $1,900 & I led my team "SPF SHRINK!" to a top 10 finish, raising over $8,000! And, to top that off, our Relay raised over $241,000, making us #1 in Southern California out of 91 Relays & #16 in California out of 427 Relays!

3) NEW FRIENDS... If it wasn't for this journey, I wouldn't have met some of the most kickass people that I am now proud to call dear friends... Survivors, cancer fighters, advocates, supporters & volunteers. What's even more amazing is that some of them I've only met in the virtual cancer world of Facebook, yet I still feel a closeness to them that's indescribable! Through their continuous drive, spirit & dedication, this strong, brave, honest, generous, loving, inspiring group of people has motivated me to be a stronger, more positive person. Through their friendship, companionship & support they have given me a new perspective on life, love, friendship & hope that has changed not only how I think about cancer but also how I manage my own survivorship & fight back against the disease. These amazing friends have touched my life more than words can say & they will forever be in my heart... you guys know who you are!

2) PASSION... I always thought I had passion, for family, friends, art, music, sports & life in general. Cancer forced me to look inside myself & redefine the meaning of passion in my life. I still have passion for these things, but the last 3 years have made me realize that cancer is also my passion... sharing my story, bonding with fellow Survivors, raising money for cancer research, increasing awareness for cancer & cancer prevention, being an active member of cancer support groups like Stupid Cancer & mAss Kickers Foundation, volunteering for cancer charities like Relay for Life & last but not least, becoming part of a worldwide cancer community that is millions strong & fighting this fight together. This passion & self discovery has fueled a fire inside me that I didn't even know was there... I feel more alive now than ever & I am so excited to continue this momentum & see where it takes me!

1) I AM A SURVIVOR... Relay '10 was the first time I was ever referred to as a "Survivor"... wearing that SURVIVOR shirt among so many other Survivors was a very powerful feeling. I had always downplayed my experience because it was stage 1 cancer & I never had to have chemo or radiation like many of my friends. But, being celebrated as a Survivor & congratulated by total strangers made me realize I have something in common with everyone who's ever had cancer, a bond so special that it will connect me with these people for the rest of my life... regardless of our diagnosis, age, health or life story, we have all heard the words "You have cancer" at some point in our lives & it changed our lives & the lives of those we love forever. Cheers to all the Survivors out there... those whose fight is over, those who are still fighting & those whose fight has yet to begin. We are all Survivors. We share the same fears, the same hopes & the same spirit... we ARE in this fight together!!

THANK YOU TO ALL OF YOU WHO HAVE SUPPORTED ME, INSPIRED ME, LISTENED TO ME, LAUGHED WITH ME, CRIED WITH ME & LOVED ME THROUGHOUT MY CANCER JOURNEY... Having you in my life helped make this Top 10 possible...... Mom, Dad, Steph, Scott, Maddie, Abby, Grandma, Jim, Aummie, Poppie, DeAnn, Steve, Jessica, Lauren, Julie, Cheryl, Dick, Angie, Kay, Mike, Patty, Erica, Liz, Grace, Melissa, Amy, Charissa, Ligaya, Jenn, Heather, Amanda, Kyle, Eric, Amanda, Kevin, Arilda, Kat, Michelle, Zac, Christine, Rachael, Amanda, Gary, Rachel, Becky, Patti, Rebecca, Kelsey, John, Catherine, Gayle, Kari, Chris, Jenise, Kara, Blake, Liz, Amy, Jered, Cheryl, Mo, Willow, Tari, Tracy, Jocelyn, Kat, Emily, Michelle, Sue, Cortney, Aly, Julia, Banda, Katy, Rick, Andrew, Chuck, Bonnie, Will, Kim, Jessica, Matty, Biggs, Jason, Mikey, Bran, Dave, Otis, Mark, Scott, Tony, Heather, Matthew, Kenny, Stacey, Stacy, Rachel, Amanda, Kate, Arun, Brad, Karina, Klarissa, David, Mary, Angie, Kirstie, Frankie, Clint, Kristen, Jamie, Lindsay, Marina, Emily, Kristy, Kim, Nick, Gary, Mark, Cass, Rob, Benjamin, John, Kristi, Kelsey, Josh, Christine, Megan, Jen, Rachel, Colleen, Jessica, Jackie, Jeffery, Pilar, Avelyn, Larry, Kimmy, Brandon, JB, Betty, Marnie, Anne, Kathy, Maureen, Sara, Stella, Dick, MaryAnn, Mike, Nancy, Ginny, Lisa, Cathy, Karen Lee, Carl, Lois, Jan, Billie, Sue, Tom, Mike, Kenny, Sharon & anyone else I may have missed!! XOXO

Everything was going well until ... it wasn't.

When I was growing up I used to get in trouble if I used any form of the word “suck.” Well mom, some things just suck. Tumors suck, cancer sucks ... suck, suck, suckity suck. Everybody knows it. Up until my own experience, cancer hadn’t touched my life personally. I had only seen it portrayed on tv or in movies. Nothing about my cancer journey was really what I expected. I thought in chemo I would be miserable, vomiting, frail and bed ridden. But thankfully I tolerated it really well. Unusually well, I thought. I thought I would be eager to be done and back in the real world. The latter has proven to be the most difficult part.

It all began with an itch. I wish it was the figurative itch like an itch to travel around the world but instead this is the literal itch. Nonetheless, it was the beginning of an adventure. I’ve been known to take a midday cat nap and one fateful day I woke up scratching my legs and feet like crazy. After the itchiness persisted for more than a week I went to my primary care doctor who kept asking me about a rash that did not exist, did blood work that came back normal and sent me on my way to a dermatologist. Dermatologist’s diagnosis: eczema. Antidote: shorter, cooler showers, less soap and vaseline (lots of vaseline). I felt dirty. I felt gross. And I felt worse.

I only saw that dermatologist and his voodoo medicine twice before I turned 23 and lost my health insurance. Off to fend for myself I began to uncontrollably cough (usually in your face) and once I started it was difficult to stop or catch my breath and each time I would nearly vomit or pass out. I dreaded anything funny because laughing got the coughing fits started too. It became difficult to breathe while laying down flat and I usually had to sleep nestled in the corner of our couch or steal pillows when everyone went to work to create a pillow “teepee” to perch myself upright. I remember sending a text one night that said “I’m afraid this is going to be something I can’t handle or afford.”

Shortly after that text I found myself in the ER, my heart and lungs were surrounded by immediately life threatening amounts of fluid, a huge tumor in my chest and lesions in my liver. I was finally diagnosed with stage IV Primary Mediastinal Large B Cell Non Hodgkin’s Lymphoma. I started chemo immediately and all was going well until ... it wasn’t. I stopped responding to chemo. I was immediately put on salvage chemo (the first of which failed too) and shuffled off to have stem cell transplant. In conjunction with the stem cell transplant I participated in a clinical trial for Bexxar which made me radioactive (but not a superhero, I thought I should at least glow green or something). On 09/09/09 I finally heard the sweet word “remission.”

Since then I’ve been active in starting up the San Diego chapter of the I’m Too Young For This! Cancer Foundation for Young Adults, volunteer at the Leukemia & Lymphoma Society and active with other cancer non profits like Imerman Angels and First Descents. I’m really passionate about connecting with and advocating for young adult cancer survivors.

I thought being a cancer survivor and not a cancer patient would be the easy part. I thought life would continue as normal but now I would have a few extra battle scars and some cool stories. Being a survivor is really just the beginning.