My job at Cancer Commons is to help cancer patients better understand and make decisions about their treatment. Through our Ask Cancer Commons service, I also strive to inform patients about new drugs in trials that they can discuss with their oncologists. Sometimes, I explain the rationale behind a patient’s current or upcoming treatment, and sometimes I try to convince patients to actually get treated, rather than hope that a vegetarian diet and herbal supplements will cure their metastatic disease. Continue reading…
California resident Allison Brighton is the founder of a Facebook group that unites people dealing with glioblastoma (GBM) so they can discuss their experiences and receive support from each other. Here, she shares her husband’s GBM story.
Bill and I met on June 19, 1993. We fell in love at first sight, got married 5 months later, and had our first son on June 19; one year after we met. On February 16, 1997, our second son Austin was born, then on June 3, 1999, our last son Tyler was born. Happy times; we were so happy.
We decided we were done having children; three sons was enough. We had them in tee-ball, football, bowling, Disney drawing classes, and more—anything that a boy could do. They were like three little munchkins, and we couldn’t love them enough!
The years passed by, and in 2001 Billy said his eyes were giving him problems. “Huh,” I thought, “then go to an optometrist.” So he went, and they found nothing. “Ok,” we both thought, “weird.”
Then, two months later, Bill said again that his eyes were acting strange, and he was getting headaches at this point. So he went back to the optometrist and told the doctor, “something is not right.”
The doctor examined Billy again and said, “There’s nothing wrong with your eyes, so I recommend you get an MRI.” So, our primary care doctor ordered an emergency MRI. At this point Bill and I were starting to get worried. We went to get his MRI and then headed home to wait for the results, which would be days away.
Bam! The phone rang at about 7:30 that night, and it was Bill’s doctor. The doctor went on to tell Bill that he had a tumor the size of a baseball…and needed to have it removed immediately. We both were in shock. There are no words to describe the feeling.
A couple days later, Bill went in for a craniotomy to remove the tumor tissue, with our family and friends joining us at the hospital.
Now, Billy’s grandmother had brain tumors, but they were never cancerous, so she continued to lead a pretty normal life. And we all assumed that Bill’s tumor was the same kind as his grandma’s—not cancer.
Well, Bill was in surgery for hours; I can’t even remember how long his surgery was. But when the surgeon comes out with a nurse at his side, you know something’s not right.
The doctor started telling us how well Bill did in surgery and how he was now resting in the ICU. “Ok,” I thought, “but what was the tumor?” The doctor went on to tell us that Bill had a malignant brain tumor, grade 4 GBM. (They later sent a tumor sample out for a second opinion to a location in San Francisco, which confirmed it was GBM).
The doctor told us that Bill had about six months to live. I fell on the floor, literally, started vomiting, and my two sisters-in-law had to help me to the bathroom. At that point, I blacked out.
When I came to, I had to go see Billy. I had told Billy I would be the first face he’d see when he came out of surgery. But I just couldn’t; his parents went in first, then my father, and then me.
When I entered the room to see Bill, he stared at me with his blue eyes and asked, “do I have cancer?” We had been told by the doctor not to tell Billy he had cancer because he needed his strength to recover from the surgery.
I tried lying, but I just couldn’t. I told him that, yes, he had brain cancer, and I crawled up into his bed and cried with him.
Three days later, Bill was sent home with hospice services. At this point, he didn’t seem to need hospice care because he was walking and talking just like normal. So, I didn’t call them.
With all of this happening so quickly, there was no time for any extra research. Bill had his surgery at St. Bernardine’s in San Bernardino, California. They took out 90 percent of the tumor and said it was deep-seated. But we were lucky to have a great doctor, Dr. Rowe, perform the surgery.
When we got home from that surgery, my mother, my dad, Bill’s dad, and I began researching like mad. On the internet, making phone calls—anything we could do to find a doctor to ensure that Billy would live. We researched and researched! As you could imagine, we had never heard of GBM until Bill was diagnosed. But we weren’t going to settle for anyone, and we wanted the best for Bill.
My research lead me to three other doctors, and I made appointments with the two that were here in Los Angeles. Dr. Cloughesy at UCLA wanted to reopen Billy’s tumor site and place chemo wafers inside. Dr. Black at USC wanted to reopen his brain and take out more tissue. We didn’t want to do another surgery, so neither of these options would work for us.
Next, we wanted to see the third doctor I had found: Dr. Friedman at the brain tumor center at Duke in North Carolina. So our friends started raising money for us to travel to help save Bill’s life. They did raffles, car washes, silent auctions, and even had a softball tournament with all the bells and whistles! So many people reached out; it was incredible. We raised so much money, and it was put into a Fight For Life Fund for Bill. We’re very thankful for everyone’s help.
Then, thanks to the fundraising efforts, Bill’s dad, myself, and Billy boarded the plane, and off we went, not knowing what to expect. We touched down in North Carolina, and then we were off to meet Dr. Friedman.
As we waited for the doctor to meet with us, we were all nerves, of course. But when he walked in, I swear I knew that second that he was the doctor for us. He was so passionate and caring, and he seemed absolutely concerned for Bill. He was the first doctor to say, “let’s kill this beast before it grows back.” And that was all it took.
We decided that Dr. Friedman would prescribe Bill his chemo and radiation. Then we would fly home and go to Bill’s oncologist to administer what Dr. Friedman prescribed. Our two doctors worked beautifully together. Bill was bombarded with Temodar, CPT-11, some additional chemo drugs, Celebrex, and radiation.
Dr. Friedman said that Bill was as healthy as a horse and could handle the amounts of the chemo drugs he was prescribing. So Bill went through the whole chemo and radiation process with almost no symptoms. He did have some vomiting and sickness, and he took some time off when needed. But he was so young, at age 30, and very fit, so the doctor had no problem with him continuing to work, for the most part.
At one point, I did have to put my foot down and tell the doctor that Bill couldn’t take the last treatment of CPT-11 because he was on death’s door; he had lost 40 lbs. in one week. So we didn’t do it.
See, doctors work for patients, not the other way around, and I made sure that our doctors knew this. I was very young (28 years old) and very aggressive and pushy when it came to Bill’s life. He had to see our boys grow up.
As you can imagine after all those treatments, Billy’s first MRI after treatment showed necrosis—dead tissue at the site of the removed tumor. But the tumor hadn’t grown back, so they did not put Billy on any more treatments, but scheduled an MRI every 3–6 months.
The idea of no more treatments was scary. “Yikes,” I thought, but I had to believe in the doctor and in Billy. Billy never complained about being sick; as a matter of fact, he said he knew he would beat it. He was very positive never negative. That’s just Bill’s nature. He did have some eye issues that remained, but nothing that he couldn’t adjust too. He’s a miracle to me.
So we just continue life as normal as normal was, and after 2.5 years, Dr. Friedman said he was in remission (cancer free). Wow, we couldn’t have asked for anything better in life. We were so happy. But the doctor did say Bill would be sterile after all that chemo. Fine with us.
Well, on April 5, 2004, I gave birth to a beautiful baby girl. She was a miracle baby. We couldn’t believe we finally had a girl. She was so precious and beautiful it was undeniable to me that Bill’s cancer was gone and he would live to see our four kids grow up.
As the years passed, the anxiety started to go away, the MRIs stopped, and we were just a normal family again. Don’t get me wrong; it was the hardest thing I have ever had to go through. Over the years, I have had a few midlife crises myself from PTSD, but Billy continues to support me in any way he can. In some ways I feel I’m not good enough for him. He beat the hardest cancer in the world, and I have midlife crisis on my plate. Life is not easy!
It sucks when a loved one becomes sick with cancer. I lost my dad to lung cancer seven years ago. Life throws so many obstacles at you, but if you take it with a grain of salt and stay positive, things always work out—except if cancer is involved.
For a patient and loved one, you need to remember it’s two individuals going through a different process. Bill’s path was much different from my path of being his wife.
You also need to take all the available information in account. We learned so much through our journey, and I wanted to share this story with others to give them hope. There is always hope.
P.S. Our boys are now 23, 20, and 18, and our girl is 13. Bill and I live in Murrieta, California, and have been married almost 24 years. I work part time, and Bill has been with the same company for 30 years. We live a peaceful life and are enjoying watching our children grow into adulthood.
Super Patients are cancer survivors who learned to be more engaged in their own care. Cancer Commons believes every patient can be a Super Patient or benefit from a Super Caregiver or Super Advocate. We hope these stories will provide inspiration and hope for your or your loved one’s own treatment journey.
In 2007, Steven Keating got his brain scanned for fun. “I volunteered for a study,” says Steven, who was then a student at Queen’s University in Canada. “I wanted to help science, and I was curious about seeing my brain.”
He saw more than anticipated—the magnetic resonance imaging (MRI) revealed a dime-sized abnormality in his left frontal lobe. But the researchers couldn’t tell what it was, and he had no adverse symptoms. “They said ‘don’t worry, keep an eye on it,'” Steven, who is now a Mechanical Engineering graduate student at the Massachusetts Institute of Technology (MIT) Media Lab, recalls. A follow-up scan in 2010 wasn’t worrisome either. Continue reading…