The diagnosis of my husband’s brain tumor was, at the very least, a shock. Looking back, there were some warning signs prior to our visit to the emergency room on that cold January morning, but as they always say, “Hindsight is 20/20.”
And so our story begins.
The month of November 2002 had been very stressful for Rob, a 32-year-old National Account Manager for Sprint PCS. Job cuts were causing everyone to feel stressed and overworked. Rob was feeling the effects as his team of thirteen managers had been reduced to three.
Over Thanksgiving break, I noticed Rob had been fatigued and just plain grumpy. While at his grandmother’s house for dinner, I asked Rob to pass me a plate for our son, Gavin. Rob answered me with a loud curse word. I was embarrassed and angered. What was wrong with him? The family members just stood and stared. This was NOT the Rob we knew. He was acting totally out of character, especially at Grandma’s house!
A week later, we ordered a pizza over the phone and I noticed Rob couldn’t remember our address or phone number. When he finally blurted out the phone number, it was incorrect. I remember asking myself, “What is going on with him?” I dismissed it as the undue stress he was feeling from work.
For the next two months, strange and bizarre incidents like the ones I’ve listed above kept continuing. Finally, in January, Rob was having a hard time getting out of bed. He went to the doctor and explained his symptoms and the horrible back and head pain he was having. The doctor found Rob had strep throat, and Rob immediately began taking oral antibiotics. The doctor also prescribed pain medication, saying that the strep throat and stress from his job was probably causing some migraine headaches. But the pain persisted and Rob became worse.
On the morning of January 12, 2003, Rob woke up with no peripheral vision in his right eye. I immediately called his doctor who advised us to go to the emergency room. The doctor at the ER said that Rob was probably experiencing the effects of an ongoing migraine; however, he would run a CT scan “to make certain nothing else was going on.”
The doctor didn’t seem overly worried, and when I asked if I could go back with Rob during the CT scan, he said, “Oh … this will only take about thirty minutes. We’ll be back in no time.”
Two hours later, the nurse rounded the corner from the CT scanning room with a distraught look on her face. I will never forget the feeling in my heart, as I knew, at this point, that something was terribly wrong.
The doctor wheeled Rob over to the white board to show us the scans. “We see something in Rob’s head that we don’t like to see.” When he turned on the light behind the white board, an image that will always remain sketched in my brain showed up on the scan. An orange-sized mass was clearly visible. Even with the untrained medical eye, there was no denying that something huge and infiltrating was in my husband’s brain.
“What is that?” I asked.
The doctor responded, “We don’t know yet.” The walls instantly started caving in. I remember the doctor saying words, but I can’t remember to this day what was said. The next thing I knew, a nurse was standing over me, putting a cold cloth on my head. Here I was, the WIFE of the patient … and I had passed out. My darling husband, Rob, was also standing over me, asking if I was all right. When I finally came to, we were sent by ambulance to St. Luke’s Hospital in Kansas City. More images, including MRI pictures, had to be taken before surgical procedures could begin.
I don’t remember much about the next few days. Words like tumor, cancer, side effects, and surgery came rushing past my ears like a stormy ocean wave. Somehow we managed to inform family and friends of our situation. People came through for us when we needed them most. Meals were cooked, phone calls were made, insurance approvals were obtained and, best of all, our two young children were taken care of.
The surgical team operated on Rob’s tumor on January 16, 2003. Looking out the window of the hospital ICU waiting room, I remember asking myself, “How am I going to be a single mom at the age of thirty-three? How will my kids, then three and five years old, be able to go on without their daddy?” The fear that accompanies the diagnosis of a brain tumor is inconceivable. Fortunately, the doctors were able to remove “as much of the brain tumor as they could see.” The diagnosis was that of a Grade II oligoastrocytoma brain tumor.
During the course of the next few months, radiation and chemotherapy experts recommended the “watch and wait” program. At first, I didn’t understand why they weren’t aggressively seeking the powerful drugs and radiation to kill any remaining cells that could be lurking. What we’ve found out since that time is that radiation can only be used in the brain once, and we needed to save that option for as long as possible. We further found out that low-grade tumors can often remain “silent” for many months or years. The use of chemo does not prevent the tumor from coming back; in fact, the chemo may have more negative side effects than good results.
Also during these months, we researched and found the best hospital in the world, The Brain Tumor Center at Duke in Raleigh-Durham, North Carolina. Receiving a call from Dr. Henry Friedman on May 2, 2003 began the next leg of our journey. I knew that I would accept no less than the best follow-up care for Rob, and Dr. Friedman is the best of the best. His confidence and spirit have seen us through our darkest hours.
During this time, baseball great Tug McGraw was diagnosed with a grade IV glioblastoma. Reading the newspaper that day, I remember pointing to Rob and saying, “This is going to be the biggest thing that has ever happened for brain cancer research.” I followed Tug’s progress until his unfortunate death the following year. I watched and waited as The Tug McGraw Foundation was formed.
Soon after, a blessing bigger than we could have imagined came forward. Ms. Jennifer Brusstar, the president of the Tug McGraw Foundation, started her steadfast efforts against brain cancer. Our local organization, BeHeadStrong, partnered with Ms. Brusstar and the Tug McGraw Foundation to form a partnership to beat this dreaded disease.
My husband is now a three and an a half year brain cancer survivor with no recurrent tumors. Our lives have changed. Rob suffered some long-term side effects from the surgery and is now a stay-at-home dad for our two beautiful children. I have returned to the classroom as a fourth-grade teacher. We are both extremely active with BeHeadStrong in partnership with the Tug McGraw Foundation. Our children, now six and eight, proudly wear the “Tug” bracelets in honor of their daddy.
We know the statistics that surround us, and we know that Rob’s cancer could come back. But we choose not to focus on that. We focus on the love that surrounds us and the compassion and hope that Jennifer Brusstar and Dr. Henry Friedman have given us. We focus on the team at Duke University and the promise of more research to battle this disease. We can and will, one day, find the cure to beat this disease. We are all in this together. If everyone will “step up to the plate” and, in Tug’s words, “BELIEVE,” we will win the World Series against this illness.
Ya Gotta Believe,
Gail Mullin, wife of Rob Mullin—3 1/2 year brain cancer survivor. The photo is of Gail and Rob.
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