Fellow Fighter Scott


In July of 2002, I was diagnosed with a Stage 4 Glioblastoma Multiforme Tumor located in the right frontal lobe of my brain. That was 7 years ago and I had just turned 37 the month before. At the time, my wife and I had been married for 10 years and we had 3 children, Jacob (8), Benjamin (6) and Hannah (2). Prior to my
diagnosis, I had been having severe headaches that my Dr. just told me were probably migraines and not to worry about it and to just take Advil.

After about 4 months of these come and go headaches, my vision began to get blurry with the headaches. I had to call my Dr. again and tell him that this was not normal and that he needed to schedule a scan of my head.

Since I have a pacemaker (put in when I was 20 due to an electrical anomaly in my heart) I couldn’t get an MRI, so I had a CT Scan. Immediately after the scan was done thatFriday night, they admitted me to the hospital and scheduled me for surgery Sunday morning.

My family and I had the car packed and ready to go to Florida for summer vacation on Saturday. My parents were already there waiting for us (really bad day).after 5+ hours of surgery that Sunday, the surgeon had removed a 5 ½ oz tumor from my brain that had been wrapped around my optic nerve. When the pathology report came back the Dr’s told me that they don’t even treat that type of tumor and they recommended some specialists that I should talk to. The name that kept coming back was Dr. Henry Friedman at the Brain Tumor Center at Duke. They took me in right away and put together a treatment plan for me.

The Doctors told me that there was hope. I immediately began with 8 weeks of
IMRT brain radiation and began my first round of chemotherapy. Shortly after my second round of chemo, there was some activity in the surgical cavaty and they brought me into a clinical trial that involved a new chemotherapy agent and additional medications administered with it. The trial lasted a year and I did another 2 years of chemo after that.

Today, I am six years with clean checkups, I have a CT scan every six months and I have follow up visits at Duke once a year. Six years ago I had to make a decision to fight or rollover, I chose and still choose to fight. I made a commitment that no matter what they asked me to do that I would do it. No matter what the side effects or risks. As I see it, I had no choice. The alternative was unacceptable and I was prepared to do anything no matter how scared I was and I was scared. I didn’t listen to any of the statistics and stayed away from anything or anyone negative. I tried crying, but it didn’t help and I stopped asking why me and started asking why not me.

As Cancer Fighters and survivors, we can not sit idle and wait for a miracle. we must fight fight fight, stay positive and not give up before the miracle happens. NEVER QUIT NEVER QUIT NEVER QUIT!

I believe that as a survivor, I have a responsibility to help others that are fighting and surviving by sharing my experience strength and hope so that they too may see that miracles do happen and you have to have faith that you will get there. Faith is hope with a track record so don’t stop hoping and do not give up.


Bryan said...

Hey Scott this is Bryan(aka Meaghan's boyfriend). Thanks for sharing your story of hope and congrats on winning your fight. Keep fighting!


jjhanz said...

Hey Scott,

What a great story! I watched my brother take on the same fight you did. He survived 3 surgeries and almost 4 years, but finally lost his fight in August 1999.

PLEASE keep telling your story. So many others do not know they have hope, and they can fight.

Too often the medical community thinks a Glioblastoma diagnosis is a death sentence. And they act accordingly. My brother made it as long as he did because of his will to fight, not because of any medical advancements.

You and Meaghan are hero's. You give others hope that they can fight back. Those of us looking in from the outside can never know your pain.

But, having held my brother as he took his last breath, I know what losing a loved one feels like. Nobody should ever feel either pain.

Live. laugh, love and above all, be happy!

Jettychan said...

Hey fellow GBM survivor! I really must be a rarity, no headaches for me, just a gran mal seizure and a rush to the hospital. Your comments at the end are spot on, there is no other option, we have to keep fighting. Thank you for sharing your story! It is nice to read about other survivors like me! Love Love Jettychsn

Unknown said...

I am very glad you chose to fight. Keep fighting and praying.

Anonymous said...

Hey Scott,
This is Ashley, my mom was diagnosed with Glioblastoma in Dec. of 2008, just a week after I had twin baby girls, her first grand-babies.She went through surgery, chemotherapy, and radition. Everything looked great until Jan. of 2010, they said her tumor was growing back plus two more spots!!!They have her on something new called Avastin, we're not for sure if it is working or not until she has another MRI in Feb.Hopefully she will be like you and live longer than the doctors say!! She has to be around to watch my babies grow up.She has to spoil them, that's what grandmothers do!!!Keep fighting and hold your head high and don't let anyone tell you other wise!!! God Bless!!!

Anonymous said...

I am so thankful that u survived this fight. My husband is currently fighting the same thing. He is going to City of Hope in Duarte California. They are doing a trial where they injected the herpes virus into the tumor in the hopes of weakening the tumor and the chemo will work better. Do u have any advise to give me. Should I be taking him somewhere else. We are willing to do whatever it takes, he is such an inspiration to my daughtes and myself. He never complains. What type of treatment did u receive. My email address is rowestevee@yahoo.com, phone number 760)243-1382. My name is Isabel Rowe and thank you.

Anonymous said...

Ditto to your diagnosis, no symptoms until 3 seizures one weekend in 2009. 1st home infront of family. I was 38 years old.
2nd in ambulance
3rd in ED
MRI on Tuesday, surgery the Wednesday.
6weeks of temazolomide Chemo along side 6 weeks of radiotherapy. What no hair still on front top.
2nd course of chemo I was too aneamic to continue. 20 units of blood over 3 months. One session of 5 units!
Retired from NHS as an OT
Since them tumour is dormant/not really visible!! but slight stroke last year 2011 from radiotherapy damage.
BUT not dead! still walking and recently got my driving license back. Hurray!
God is good