Issue 2 www.relayforlife.org/queensburyny February 2014

Welcome to the second edition of our

Newsletter! The Relay season is starting off

at a very fun start with a lot happening for all

of our Cool Cat Relayers! Only a matter of

days before we will be Rockin’ Around the

Clock with Queensbury’s Relay for Life

event in May!

Are you registered online yet? These teams

are! (Appearing in order of most funds raised!)

Faye’s Joy

Sherwin Williams Capital District

Team Destroy!

Allen’s Army

All Night for the Fight

AngioDynamics

Flying Eagles

Nemer Roadrunners

Stompers

Team Destroy

Legal Eagles

KK&N Planting Hope

Ryan’s Road to Recovery

CURE

Encompass Insurance

Cancer Kickers

T-Birds

Charlie Brown’s Angels

Dee’s Destroyers

Heavens Angels

The Rainbow Chasers

Bop’s Gang

GFMS Builders Club

Soaring Warriors

Team Fuel for the Flight

Angels of Faith

Your Queensbury Relay for Life committee

has been hard at work since last Fall! Since

then, we’ve enjoyed Pink Hair Day with

Dee’s Destroyers; “Pawsed” for a puppy

calendar contest; participated in the Holiday

Parade; hung out at Walker’s Store for its

Farm Festival (thank you Lyndsey Brown for

representin’); howled with the Legal Eagles

at its doggy Halloween party; celebrated

Black Friday at Uno’s; Kickball and beauty

pageants with KK&N Planting Hope; holiday

wrapping at the mall, and flirting with

Cupid!

And then there was our real life Sock Hop at

the Queensbury High School last month!

One rocking DJ, Duane Bullard, mixed with

Dirty John’s hotdogs and poodle skirts made

for a fun time had by all!

Thank you to everyone who has showed

their support to our Relay so far! Whether

you are planning a fundraiser, playing MC,

manning a table for awareness, soliciting

team members, spreading the word, or

sending emails behind the scenes – KUDOS

TO YOU ALL!! Keep up the great work!!

Support your fellow Relayers by sharing these events with everyone you know! Further

information for each event can be found on the ACS and Facebook pages, or ask any

committee member! Check out the flyers at the end of this newsletter and share with everyone

you know!

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March 3, 2014 –The Cancer Kickers invite one and all to their Zumba

fundraising event at the Fort Edward School gymnasium! See the flyer

at the end of this newsletter for more details!

May 10, 2014 –Heaven’s Angels invite everyone to order your lunch or dinner at Angelina’s in South Glens Falls from 11:00am to 11:00pm, as Angelina’s is donating 15% of your check to Relay for Life! Order out or visit the restaurant at 75 Saratoga Avenue to partake in the basket raffles, luminaria sales, and more!

March 29, 2014 – The Legal Eagles’ third annual basket party will be

held at Sweet Basil’s on Route 9 in Queensbury! This year’s door

prizes include an I-pod touch, Mets tickets, Lia Sophia, and more!

See the flyer at the end of this newsletter for more information!

March 27, 2014 – Heaven’s Angels invites you to print the following certificate and take it with you to Friendly’s on March 27th. Friendly’s is graciously donating 20% of each check to Relay for Life!

March 15, 2014 – Ryan’s Road to

Recovery Team presents Karaoke for a

Cause! Join us for a spaghetti dinner and a

lot of fun! See the flyer at the end of this

newsletter for more information!

September 27, 2014 - Kim Gonyea of the Legal Eagles is

hosting the third annual 5k marathon walk/run to

benefit the American Cancer Society! Please join us for

a great time while supporting a great cause! Search for

us on Facebook “Friends for a Cure 5K”

July 27, 2014 - Rebecca Turner Cullen is once

again sponsoring the Divas with their 5th

Annual Divas for a Cause Drag Show!! If you

haven't seen one of the prior shows, then you

are really in for a treat and don't want to miss it!

It’s a Divalicious good time! Find us on

Facebook!

Rebecca Turner Cullen and PJ Ferguson (Citizen’s Treasure) are co-

hosting their first annual music festival at the Blue Moose Tavern!

Citizen’s Treasure will be joined by some of our TOP local bands (line-

up to be announced soon)! Festivities will include a spaghetti dinner

and lot of fun vendors ! Event page coming to Facebook soon!

has been

Relaying with Queensbury Relay for Life for the

past six years. Rebecca tells us why she relays:

“I Relay for Diane Kennedy Pomainville, my 46

year old life-long friend who died from lung

cancer in August 2012. I Relay for my

grandfather who died from colon cancer. I Relay

for my father-in-law who died from pancreatic

cancer. I Relay for my friend's son who died on

his 33rd birthday after a long battle with cancer. I

Relay for my high school best friend, Tammy…

my six year old buddy, Ryan… and my wonderful

new friend, Nola, who are all Survivors. I Relay

for all of the families I have met in my line of work

over the years who have come into my life

because of cancer.

I Relay for YOU.

I Relay for me... the satisfaction I feel for knowing that my role with the Relay for Life is helping the American Cancer Society save lives by:

Helping people stay well by helping them take steps to prevent cancer or detect it early when it's most treatable.

Helping people get well by being in their corner around the clock to guide them through every step of their cancer experience.

Finding cures by funding groundbreaking research that helps us understand cancer's causes, determine how best to prevent it and discover new ways to cure it.

Fighting back by working with lawmakers to pass laws to defeat cancer and rally communities worldwide to join the fight.”

Nola Byrne, Survivor Extraordinaire

Nola’s Story

As I walked toward the Glens Falls Hospital Emergency Room doors, I had the worst feeling in the pit of my stomach. All my senses were suddenly heightened as I lifted my head and looked at the double doors. Somehow I knew that this visit was much different. I turned and looked at my husband and as the words rolled off my tongue not even I could believe what I had just said, “I have always’ known I would die before the age of thirty from cancer.”

May 26, 2012 was the date I was admitted to Glens Falls Hospital for a blood clot in my jugular, and swollen lymph nodes that appeared to be malignant. “I knew it!” I told myself. The feeling I had on that day was one that was so unsettling. It was as if I was standing behind a thoroughbred racing horse and he had just kicked me in the very center of my gut. They finally have a bed ready for me and off to my room where I would remain for the next eight days. I saw my oncologist the next morning. He explained to me that my scan had shown enlarged lymph nodes that appeared to be cancerous. “I believe you have Hodgkin’s Lymphoma, Nola. See, the good thing about this type of cancer, it is very treatable. You know Nola, if you are going to have cancer this is the type you could hope for.” He proceeds to tell me about the disease and the statistics of being cured.

“O.K. what do we have to do?” I asked. I knew whatever I had to do, I would do it. After all, the prognosis of this type of cancer was good, right?

I was sent to the operating room to have a biopsy of an anterior meditational mass. I had to have my lung deflated and be on a chest tube for at least three days after the surgery. Then, what seems to be what a cancer patient does most, it was time to wait.

Heroes Among Us

Tick tock! Tick tock! I waited what felt like an eternity for my oncologist to return with the results of my biopsy. “Cancer, are you really surprised Nola?” Upon entering the emergency room, I gave the doctor a rundown of my family history as I was getting undressed. Everything was moving so fast but it was as if I knew because I say, “Family history, blood and clotting disorders, my grandfather and father both had prostate cancer. My grandfather was also recently diagnosed with brain cancer. Lung, skin, cervical, ovarian, on and on I went. I laid there looking out the window with tunnel vision. I am there but my mind had gone somewhere else. I just kept thinking “DVT, in my jugular? You are so lucky to be alive, Nola.” I had been to Adirondack Extreme two weekends before and that is when my shoulder pain had started. I thought it was from exertion at Adirondack Extreme, and when the pain hit my neck as well, I just thought it was from allergies. After all, my glands were swollen and I had been sneezing. “Indoor rock climbing, Nola, you are so lucky that clot did not move to the brain.” Although at first I was scared because of the blood clot and the location, I was soon grateful that it had made me take that trip to the ER on May 26th 2012. A tube hung out of the left side in between two upper ribs and was attached to a bag that had filled with fluid and blood. I had multiple surgeries before so medically, not much frightened me. I knew I could handle anything I had to do. I just needed to know what that was. Tap! Tap! Tapping my fingers off the food tray, time sure does have a way of slowing down, hands on the clock tick ticking away at a pace slower than a snail. In walks my oncologist. “Ahhhh, finally!” I mumble under my breath as this familiar feeling hits me dead center, bull’s eye! That darn horse had kicked me again! Boy he sure hits his target every time. Hodgkin’s Lymphoma Stage II B. There it was, the confirmed diagnosis. I had laid there and prayed for days and had hoped they were wrong. They were! However they were wrong about the prognosis of my disease. A 79% chance of being cured in six months is what they said. Six months of your standard treatment for Hodgkin’s Lymphoma, ABVD and I would be able to put all of this behind me.

For six months, I fought each day to drag my drained body out of bed. I pushed on and stayed strong, even though I was going through something I would never wish on anyone, not even the worst kind of person. No one should be made to suffer like that.

May 2012

The hardest thing I have ever had to do is look my little brother in the eyes and tell him that I had cancer. As tears ran down our cheeks, he had only one question for me, "Are you going to die Big Sissy?" I took a deep breath, wiped my tears and told him that the doctors say "if you are going to have cancer, this is the one to get because it is so curable." I then told him that day, and many days since then, "Big Sissy is tough bud. I will fight and win." I have told him many times that I love him and I will continue to fight so that I can watch him graduate from high school and live his dream of going to college at Boise State to play football. I said to him that when he gets there and he runs on that blue field for the first time, I will be there. He has had to see me at my worst and no child should ever have to go through that. I thank Cindy's Comfort Camp for supporting him during this difficult time. Most of all, I thank my little man for being the brave, strong young man he has been. I love you Jamal Rawlings! I am so proud of the person you are. You have brought the biggest smile to my face in the worst of times. I love you more than anything, and thank God each day for allowing you to be in my life.

They tell you about how you will lose your hair, feel nauseas and tired. What they don’t tell you is how for some the pain can be almost unbearable at times. They don’t tell you that you won’t be able to sleep for days. That even though your body and mind feel so exhausted, as if you have just woke up from a coma after a year, you can’t sleep, even with the sleep aids they give you. Like so many other women I have talked to, one of my biggest concerns was losing my hair. I had always had long hair and for me the thought of being bald was horrifying. I needed some kind of control over what was happening in my life so I decided to take control. I went and had my hair cut to my shoulders. Then I went and had a Mohawk done. I had two cancer signs, one on each side of my head. I found comfort in finding a way to take charge of something I had no control over. For me losing my hair had to me done my way! I could not imagine my long beautiful strands slowly falling out. It terrified me. After a few weeks, my Mohawk started losing so much hair I decided to save my head bald. I knew it would be gone soon anyway so why not do it my way? I completed my six months of treatment. The last two years had been so tough as it was. My father was diagnosed with prostate cancer and my grandfather lung cancer. My father and grandfather were in remission. Until I got that phone call that they thought my grandfather had a stroke. I knew time was running out and I needed to be with him. My husband, little brother and I visited him for Christmas. The day we arrived, he was placed in ICU. We spent Christmas with him in the hospital but were grateful when he was able to come home just two days before we had to leave. Throughout the last nearly two years, I have thought about my grandfather and the unbelievable strength he had. He impressed me with how independent he was and wanted to be, before things took a turn for the worst. By that summer, my grandfather had passed. It was the first cancer related death since my diagnosis.

I took a week off from chemo to drive to Tennessee and surprise my grandmother. I had to be there for her. After over 50 years of marriage, I knew she would need me. There was nothing that was going to stop me from laying my grandfather to rest and being there to hold my grandmother’s hand when she had a moment of weakness.

I was enraged at cancer by this time. Since being diagnosed, in just six short months I lost my grandfather and a friend to cancer. I vowed to fight! Dig in, bottom of the ninth, runner on third with only one out, fourth quarter with two minutes to go, and I just had to drive down the field and let my savior kick a field goal, kind of ambition. I had my moments, but instead of focusing on what was happening and being uncertain of the outcomes of my treatment, I still managed to get out there and fight. Fight for me, my grandfather, survivors, family members and caretakers. It was my way of saying, “Here I am standing toe to toe with you. I am not afraid. Give me your best shot and I will counter with two of mine.” That was, and still is, my motto. “I am CANCER FREE IN 2013!” That was the text I sent out just after midnight on New Year’s 2013. I had done it. We could move on. Start to put our lives back together, get out of debt, and my family could finally breath, take a break from worrying. So we had thought. My three month PET scan showed that the mass in my chest was not gone. It had doubled in size in three months. I was devastated. Primary Refractory Hodgkin’s Lymphoma was the new diagnosis. “WHY?!” After all that we had been through and we had to do it again. I say “we” because cancer does not just affect the person that has it. It affects your family and friends as well. I had always prayed that if anything bad were ever to happen, let it be me that it happened to. I never could have

imagined that, although it happened to me, they too would suffer. This thought was unbearable for me. To see my family suffering has been the most difficult for me. I knew I had to hold it together, stay strong and positive and FIGHT! I started Intense Chemo after a second biopsy confirmed the PET scan results. Another surgery, with a tube hanging from the side of my body. This round of chemo would be ICE. I had to stay in the hospital for three days. Over the course of three days I would receive chemo and then get to go home if there were no complications. I was supposed to do the treatments every three weeks for a total of three treatments. Instead, I did a total of five treatments before heading to Albany for an antilogous stem cell transplant. ICE was a nasty chemo that knocked me down but even as tough as it was, I was stronger. I handled that treatment like a Rock Star with something to prove. My body was beaten but my mind remained strong. I vowed to never give up and I never have. The stem cell transplant was the most difficult thing I have ever had to go through. I had complications, setbacks and disappointment after disappointment. I stayed strong though. I had to stay in a hotel in Albany near the hospital because after one week of intense chemo, all day long, my immunity would bottom out. It happened just the way they had said. About a week after the intense chemo I thought I might never get to come home. I would somehow muster enough strength to pull myself out of the bed and drag my almost lifeless body to the transplant section at NYOH. My white count had hit zero. I had chemical burns everywhere you secrete from. It was raw and pink, like I had been placed over a fire like a pig on at a pig roast, just placed over the pit. I could not talk for a week because the burns in my mouth were so bad that I could barely open my mouth to take a pain pill. For over seven days, I had nothing solid to eat. All of my nutrients was through an IV bag hooked to my port. Each night I would go to the hotel with this heavy bag that contained my nutrients and medication for nausea. A home health aide would come for an hour each day to check my vitals and temperature. I was monitored closely for infection and each day I walked into NYOH in a fog. Sometimes I didn’t even remember the ride to or from the hospital. All I did was sleep and wake long enough to take pain medicine and fall asleep again. After about two weeks things, started to improve but every day I had to have some kind of transfusion. Platelets were the last to come up for me. I did multiple bags before my nurse looked at one of the bags and said “Here it is our lucky bag. The last you will need and then you will get to go home.” She was right as the next day my platelets had jumped higher than they have ever seen. I was on my way home. Even though I was so ecstatic to be going home, I was nervous to be an hour away from the transplant team that had saved my life. If it were not for them and each kind individual that donated their blood and platelets, I would not be here.

November 13, 2013

It is hard to believe that it has been three months since my last chemo. I had my three month scan today and will find out Friday if the stem cell transplant was successful. I am grateful to be here today, for each breath I take, because life is precious and we never know when our last breath may be. I feel positive about the results I will receive on Friday, but no matter the outcome, I will continue to be humble, love deeply and be grateful for every breath because no matter the length of MY journey, I will always remember that every moment of every day is a precious gift! Love to all for your continued support!

I was so happy that I was home, and believed with everything that I would be cured. However just three months after my transplant I had another bad scan. This time it had spread to other lymph nodes. A third biopsy was done and confirmed again that Hodgkin’s was back. During that doctor visit is the only time I cried at my appointment. I knew that I was running out of options.

My doctor made an appointment with Dana Farber. I would have to start a treatment that has been on the market only a year and I would be my doctor’s first patient receiving this type of treatment. It just did not settle well with me. I started getting all of my medical records, scans, biopsy results and was on a mission. I was going to go to Dana Farber prepared and ready to ask them to take over my care. Before my appointment at Dana Farber, my cousin and a friend helped me contact Sloan-Kettering in NYC and they had agreed to see me. I felt some kind of hope. After hearing that I have months if I do no treatment, and months if I do not respond to treatment, it was the hope I needed. I met with Sloan on a Friday and Dana on a Monday. I left Sloan feeling a little disappointed because he too said my prognosis was not a good one and all they had to offer was the same treatment I would receive at home or a trial that used the same drug but with an inhibitor. It was the lack of options and the disappointing realization that I really am running out of time. Tick tock! Tick Tock! Except this time the clock seemed to be speeding up. Tick tock, tick tock tick tock! I felt like there was an hour glass someone had turned over and once that last little bit hits the bottom... POOF! Time is out! As hard as it was to hear, not one but two doctors confirm a prognosis that runs such a risk of the sand hitting the bottom of the glass, I was not going to give up hope! I still had Dana Farber! With each treatment, my neuropathy progressively got worse. After I returned home from my stem cell transplant, it was the worst. To this day I cannot open things, button things, pick up anything off the floor or table. Drop a coin or change in the store and I can’t even get it up. I have fallen, tripped and forgotten whole days, conversations and constantly forget where I have left stuff. I am in the middle of a conversation and can’t remember what I was talking about. I have driven from one end of town to the other forgetting that my destination was the pharmacy I had just drove past three times. Severe neuropathy has been my enemy since the beginning. I have chosen to go to Dana Farber for my treatment. During my first visit, I saw two Lymphoma specialists. I had searched across the United States, and even out of it, for clinical trials. I brought with me all my slides, scans, biopsy results and a list of family history that contained the many different cancers on both sides of my family. Before heading to Dana Farber, I researched my medical history and my family’s medical history as well. I was armed with new information about my family medical history and my medical history. Both of the doctors listened and as we sat there engaged in conversation I had to ask, “Is the diagnosis as bad as my doctor at home said it was?” I was shocked to hear a very similar response. My treatment will not cure me. The goal is to shrink the tumor in my chest and get me in for a bone marrow transplant. There may be complications and someone in my “condition” may not ever make it back home. Even though this treatment will be extremely dangerous for me because of my neuropathy I already have, and that this treatment’s most common and deadly side effects are due to neuropathy, it is my best option. The head of the Lymphoma Department at Dana Farber said there are other chemo treatments I can try if we need to but the only thing that will save my life is a bone marrow transplant.

“You will die from Hodgkin’s lymphoma. It will be what takes your life unless we get the bone marrow transplant. For you, a 15% chance you will make it through the treatment and transplant. However, the reward outweighs the risk,” the head of Dana Farber’s Lymphoma and Transplant Department tells me. Cancer has taken my ability to ever conceive, carry or bear a child of my own. My response, I have been blessed to raise two wonderful siblings. One that has graduated from college with her four year degree, and one that was just five years old when he came to live with me. At age 11, he is one of the strongest young men I have ever met. He does great in school and I am proud to call him and my wonderful sister my children.

I have lost friends but gained so many true and loyal friendships. Friendships that are everlasting, with or without cancer, friendships that will last a lifetime, not just the good times. I have lost three very important people to me to cancer since my diagnosis in 2012. It is because of them that I fight, survive and will win my battle. They are the reason I started my own team this year with the American Cancer Society’s Relay for Life. I only have one more thing to say. I may not know where I will be six months from now but I know this, I will win my battle! Even if I am not here in the physical form, there is one thing, the only thing that I can do to beat the beast, and that is the core of which I am, the beast will not beat!

I have always been, and will always be, a survivor. I have lived on my own since I was 15. I have raised my younger sister and younger brother, and I am mom to all four siblings. I have beaten the odds of repeating a viscous cycle of self-abusive behavior. I dropped out of school at 16 to work and pay bills just to feed myself. Against all odds, I have stayed strong and beat so many obstacles in my life. Cancer, there is one more thing I would like you to remember; I am not alone in my fight. I have the best family friends and greatest defense tactics there ever could be, God in my corner. As I step into the ring for my final round, just remember that you have failed to beat me yet… don’t think I am giving up quite yet!

October 24, 2013

I don't think that many understand what cancer can really do to you. It’s just not about throwing up or losing your hair. Or lying in bed feeling like you may never get up again. There is so much more than that. There is losing relationships, friendships, your car, your home, your dignity, your ability to ever have your own child. There is losing a part of yourself no matter how hard you fight because it definitely changes you. Here is what a survivor is - one who, in spite of all this loss, wakes up each day with hope, love and determination. A will to rise above all that they have been through and all that they will go through because of cancer. I am a survivor. I have lost a lot. I am losing a lot, but I WILL NOT be beat. I will be a SURVIVOR. Not just because I am here in the flesh but because I will prevail

through all that is still thrown at me. No matter what you throw my way I will ALWAYS SURVIVE!!!!!

September 20, 2013

I have survived! I have survived chemo, stem cell transplant, chemo chemical burns, biopsy's that included deflating my lung and having a chest tube (twice) bone marrow biopsy, transfusions after transfusions. I have survived a blood clot in my JUGULAR! For all those that are fighting keep fighting! The worst will be over and you will be blessed. When you feel like giving up, dig in deep and you will be surprised what strength is left! God Bless you all! -Hodgkin's Lymphoma SURVIVOR!!!!!

A note from your Event Chair & Editor:

Nola’s story is a difficult one to read, but presents an

important message… to never give up HOPE. It

certainly renews my determination to win this fight.

Encourage everyone you know to join Queensbury

Relay for Life and help us make cancer suffering a

thing of the past.

TEAM PARTIES: PLEASE join us at our team parties! I

have time and time again found that bouncing ideas

off from each other has been the stepping stone for

many great ideas to become reality! Please come and

share your ideas, stories, thoughts, suggestions… we

NEED you! You may have that gift or tool that you

can share to another at the meeting that will be just

what they are looking for! ALL OF US TOGETHER

make Queensbury Relay for Life the success that it is.

Join us and let’s celebrate that success! At our last

meeting, I felt a warm camaraderie among those

attending – thank you all! I am so looking forward

to seeing you all again on March 13th! Be sure to bring any $ you have collected as Jillian will

collect at the meeting! We will also have luminaria bags and forms for you to take!

FUNDRAISING: Be sure to get your FUNdraising ideas to me for inclusion on the ACS website

and Facebook! The more you share your events, the bigger participation you will get! Do you

have a fundraiser in mind but don’t know how to make it take flight? Message me and I’ll help

you make it fly! WE can do anything, together!! Share your fellow Relayer’s flyers on your

Facebook pages, at work, etc. to help spread the word of all of our awesome events!

AWARENESS: Do you know of a local event where you could represent Queensbury Relay for

Life? A marathon? Talent show? Community workshop? Chamber function? Pick up some

signage, brochures, balloons, and whatever else you need, and man a table to raise awareness.

Help spread the word about Relay and what we are doing in our community, and what the

American Cancer Society can do for our loved ones affected by cancer!

SPIRIT POINTS: Don’t forget to check off your spirit point list for a chance to win cool prizes at

the Relay event in May!

I cannot begin to say THANK YOU enough to each and every one of you who play a part in

Queensbury Relay for Life. I am so proud to be on your team!!! THANK YOU!!

Rebecca Turner Cullen

2014 Relay for Life Event Chair

Rebecca Turner Cullen (rmt@bpsrlaw.com | 932-5831)

Lyndsey Brown, Chair (lyndseybrown316@yahoo.com)

April Way (cheeravril84@yahoo.com)

April Way, Chair (cheeravril84@yahoo.com)

Pam Smith, Chair (ashsmith22@verizon.net)

Cassandra Sellingham, Chair (riley-sellingham@hotmail.com)

Chloe Collins (chloejayne29@yahoo.com)

Kim Gonyea (kfct@aol.com)

Donna Riley (eldridgelane@yahoo.com)

Kelly Seeley, Chair (kellyjselfley@gmail.com)

James Burkett, Co-Chair (jrb@bpsrlaw.com)

Ora Beaudet, Co-Chair (olb@bpsrlaw.com)

Chris O’Neill of Froggy 107.1 (chris@froggy107.com)

Rebecca Turner Cullen, Chair (rmt@bpsrlaw.com)

Ginny Regner, Co-Chair (GREGNER@GLENSFALLSHOSP.ORG)

Melissa Cheeney, Co-Chair (MCHEENEY@GLENSFALLSHOSP.ORG)

Jane Griffiths (JGRIFFITHS@GLENSFALLSHOSP.ORG)

Alexis Wielt, Youth Chair (awielt@skidmore.edu)

Kathy Baker (vkljb@aol.com)

Kevin Ramsey (kmrammer@yahoo.com)

Richard Tollner (richardtollner@gmail.com)

Jillian Kamp (jillian.kamp@cancer.org)