At the age of 22 I was diagnosed with a malignant brain tumor called Medulloblastoma. I’m proud to say that I’m a 5 ½ year survivor who has achieved every milestone doctors have set for me…and then some!
May 18th, 2003. After being misdiagnosed three times with everything from a sinus infection to TMJ, I was sent to a pain management specialist for trigger point injections to the back of my head. I’d been having extreme pain and dizziness for about six weeks and the symptoms were intensifying with every passing day. A few hours after the trigger point injections, the dizziness became unbearable and I began vomiting. I phoned the on-call doctor who, after some persuading, sent me for an MRI. It was about 5:00 on a Friday night. After the scan, the tech told me I needed to see a doctor upstairs, but did not tell me why. The doctor was the only person left in the office on that Friday evening. He looked at my scan and said, “We’re going to have to take that tumor out!” WHAT?! I’d been questioning doctors for six weeks about a possible brain tumor and every time I asked I was told that couldn’t possibly be the problem. The Neurosurgeon said he didn’t believe the tumor to be malignant, but it was large and I would require surgery within the next couple of days. He sent me to Washington Hospital Center immediately to be admitted for brain surgery. I was given pain medicine late Friday evening and remember very little from the time I checked in to the time I went into surgery very early Sunday morning. I remember waiting outside of the operating room dizzy, dazed and scared when I recognized a familiar voice. She was the nurse anesthetist who happened to be a family friend that I hadn’t seen in almost ten years. After telling her who I was and having a short conversation, I knew everything was going to be fine.
May 21st, 2003 I had a 7 ½ hour brain surgery where my neurosurgeon, Dr. Zachary Levine, miraculously removed the entire orange-sized tumor that had been growing in my Cerebellum. He was confident there was a less than 5% chance of it being malignant. I was in ICU for two weeks with a tube coming out of my head draining the spinal fluid that had built up on my brain. About ten days into my two week stay my life changed forever. Dr. Levine came into my room with the pathology results from my brain tumor. I had CANCER. Dr. Levine explained to me that this type of cancer is very rare in adults since it is mostly found in young boys ages 3-9. He felt I would receive the best treatment if I was followed by a world renowned Pediatric Neurologist at Children’s National Medical Center in Washington, D.C. Scared, confused and in tears, I decided that I was going to fight this with every fiber of my being.
My husband and I had only been married about 18 months and we had just bought a new house north of Baltimore. I was given a treatment plan of six weeks radiation to the brain and spine, which was to begin immediately and to be followed by chemotherapy. All of this was to take place in Washington, D.C. My husband, family and I had planned a trip to our favorite spot on the Outer Banks months prior to my diagnosis and were very lucky to be able to escape for a few days before my treatment began. After our few days away, my family very lovingly welcomed me back home and took wonderful care of me. I had radiation markings on my back that couldn’t be washed off, so my mom helped me bathe. Radiation caused my hair to fall out and my mom would wash my bald head for me because I just couldn’t bear to touch it. My dad and sisters drove me back and forth to my daily radiation treatments allowing my husband, Paul, to keep his new job.
Every week day for six weeks I received cranial/spinal radiation. I laid on my stomach with my head clamped into a torturous “mask” to receive my treatment. Treatment itself only lasted about a minute, but the entire process took about ten very long minutes. The spinal radiation made me extremely sick and I was nauseas and vomiting through the entire six weeks. I had no appetite and was barely able to eat. To top it all off, three weeks into radiation (on one of the rare trips I was able to go home to spend the weekend with my husband) I was diagnosed with appendicitis which required surgery to remove my appendix. Because I was unable to lie on my stomach, this pushed my radiation treatments back one week. This sent my doctor’s into a tailspin because you aren’t supposed to break-up radiation for anything.
August 23rd, 2003 I completed my radiation treatment. Although I was to begin Chemo at this point, it was determined after an unsuccessful “cocktail” of chemo. during radiation that physically my body could not handle the chemo. Doctors had informed me at the beginning of treatment that there was no conclusive evidence that chemotherapy did anything to prevent this type of tumor from returning. My doctors and I determined this was not a good choice for me.
Today I am a happy, healthy 28 year old. I’m extremely proud to call myself a cancer survivor and fully expect to live a long, prosperous, exciting life. Radiation therapy has left me with some lifelong physical “scars”, but I’ve learned to work with them and my life continues in spite of them. I have permanent digestive problems from spinal radiation, but I’m on a daily medication regiment that helps a lot. I’m missing some of my hair on the back of my head. Even though it’s a cosmetic problem, I truly miss having all of my hair. A few years ago I was told a top John’s Hopkins fertility specialist in Baltimore, MD that my ovaries had been damaged by radiation and I had no viable eggs left; therefore, I would not be able to have children. I never believed this and continued, in faith, to believe I would eventually become pregnant. I always knew I was meant to be a mom. 2 ½ years ago I gave birth to a healthy baby boy and I am currently 6 months pregnant with baby #2. While my pregnancies have been healthy, they are not without challenges, specifically severe reflux. It’s a daily struggle to combat the pain and discomfort of severe reflux because of the damage done by radiation to the lining of my esophagus and stomach. The other side effect of the brain surgery is that my pregnancies have to be delivered by c-section. In my case I am a firm believer that the combination of optimism and faith prevailed over negative predictions I had been given by doctors.
I am proud to be 5 ½ year brain cancer survivor. My goal as a survivor is to share with other young adult cancer patients and survivors that there can be a positive outcome after treatment with lots of living to be had in the future. I was blessed with wonderful doctors and a tremendous support team of family and friends and look forward to a bright future with my growing family.
Volunteer and Cancer Survivor
Volunteer and Cancer Survivor