Around December, I started having headaches during the day. These were in the front of my head. They’d happen very irregularly—maybe just once a week—and lasted just three or four minutes. If I was out with my kids, I’d have to sit and stop and close my eyes because it was so painful I couldn’t see properly.
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I’d only had seven or eight nighttime headaches and three or four daytime ones total when I went to see my doctor in January 2015. He asked if I had suffered from depression in the past. I hadn’t—but he put me on antidepressants anyway and scheduled me for an MRI. I’d only been taking the antidepressants for a couple weeks before I had my MRI the next month. I was 38.
As soon as the technicians saw my scan, they took me immediately to the ER at the hospital next door. My doctor came in and told me I had a brain tumor in my left temporal lobe, the part that processes speech and vision. It was four inches in diameter and was pushing my brain to one side. The doctors were planning to give me surgery as soon as possible, but I needed more testing. At first, I stayed in the hospital for three days of tests. Then, they sent me home with pills to keep the tumor from growing and did their best to learn as much as possible about the tumor through more MRIs. Still, the doctors told me they’d have to take the tumor out in order to figure out exactly what it was.
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I came back for surgery at beginning of March, and even knowing there was a possibility of complications, I wasn’t scared. I was ready to get it done and move on.
The tumor was a stage 3 oligal-astrocytoma. Oligoastrocytomas belong to a group of brain turmos called “gliomas,” which come from glial, or supportive, cells of the brain. They took out 80 percent of the tumor, partly because of the location, removing as much as possible without destorying that area of my brain. The rest of it, since it is malignant, has to be treated with chemotherapy and radiation. You see, the diagnosis was fatal, the surgery only done to prolong my life for as long as possible.
My life has changed since. While I was prepared mentally for the challenges that my recovery would entail, it’s been difficult. At first I couldn’t speak properly, I couldn’t read, and I couldn’t remember my family members.
Over time, it’s started to come back, but I’m not 100 percent. I’m not driving anymore because I can’t see as clearly and doctors are afraid I might have had a seizure. If people try to tell me too many things at once, I have to tell them to stop. I can’t listen. I can’t do multiple things at once. I get sick more often because I’m on chemotherapy. I have to rest a lot. Life is different.
I was in the hospital for about five days. It was two days before I opened my eyes and they took out the feeding tubes and undid my hands, which they restrained so I couldn’t touch my head. You’re just out of it. I was in the hospital for another three days before I felt more like myself. I wasn’t feeling a lot of pain because the brain doesn’t have touch receptors. But I was very swollen, and I was taking a lot of meds.
At home, I got a scooter so I could still get out and do things with my family. My children have learned I can’t do everything like I once did. But they were so young when I got the initial diagnosis so they’ve pretty much only known me like this.
Now we have a nanny, something we never planned on having for our children, but it helps us mentally. My family and friends help and continue to help me out around the house—cleaning, cooking, driving the kids. It took a couple more months before I felt better, but I’m still not normal. There is no “normal” anymore. You’re never really healed from surgery. The left side of your brain never really feels the same. You’re never really back to “yourself.” But you do your best to get on with life.
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In April 2015, I started a six-week treatment of radiation, Monday to Friday, for 15 minutes a day. At the same time, I started taking a chemotherapy pill seven days a week. I’ve been on chemo ever since, though I’ve switched to three different pills, since you’re only supposed to be on any one for six months max. Every three months I have an MRI.
This past December, 2016, an MRI showed that the tumor is growing. It’s now stage 4. They put me on a new type of chemo. I don’t think I can get surgery again, because it’s spreading and is not just in one spot. But we’ll see. My next MRI is next month. The fight continues.
In the meantime, I’m going to try cannabis pills, which I can get through a special clinic. I’ve read that cannabis has incredible success of killing tumors, and they’re doing some research in Europe. No studies prove its success, but I’m hopeful.
I joined a few brain cancer support groups in the past. Some people passed away, some are still here. I’ve stopped going because I found it depressing.
I always tell my husband that life can change instantly for anyone. So instead of crying and complaining, figure out what you have to do and move on. I used to live for the future, saving money and being pragmatic. Today, we live a much simpler life. I don’t think about the fact that I’ve got a certain amount of time left. I think about my next steps and options. I have really young kids, who are 3 and 5 now. I think about what I’m what going to make for dinner tonight, where our next vacation will be.
I think no matter what condition you have, you can change how you want your life to be. I live the best I can with what I have. Sure, I have sad moments, but I like to focus on what’s possible and laugh and have a beautiful time with my friends and family. People think you need so much, but you realize how unimportant things are. This is it. All I want is right now.