Back in 2001 and for a couple years off and on afterwards, I had some weird neurological symptoms, like tunnel vision and one dilated pupil. I had MRIs in 2001, then once a year after that and spaced out to every 2 years. There was a benign abnormality on the tests that they attributed to a corical dysplasia, which basically means a scar on the brain, a birth mark per say that's always been there. In those 6 years, it never grew or changed shape. My last one was in 2007 and then life just got in the way. 5 years, 2 pregnancies, 3 kids, and a couple years of nursing later, and we find ourselves in the summer of 2013 and I had turned 30 in the previous October.
In January 2013, I started getting migraines for the first time in my life. They started getting more frequent and debilitating. I started seeing a new neurologist, who started treating me for a migraines diagnosis. I went back to work full time in February. In early May, I went for a 2 mile run (training for a couch to 5k program) and the next day had the worst migraine I had ever had. I went that day to the urgent care center for a pain shot and more meds. That started a chronic headache that lasted for weeks. Finally over Memorial Day weekend, I decided I'd had enough and went to the ER. They did a CT scan because I normally have low clotting platelets and she was worried about a brain bleed. They found a "cyst" on the scan and I was to follow-up with the neurologist that week.
I went back in to the same neurologist treating my migraines and he said this "cyst" was in the same spot as the dysplasia from previous scans and I needed a new MRI right away. I went in on June 4th (after a week of getting approval from the insurance company) and the normally 30 minute test took an hour and a half. The neurologist was actually in the booth as they did it. Directly after, he took my husband and I to his office and told us it was likely a glioma, brain tumor, and I needed to see a neurosurgeon as soon as possible.
That was a Tuesday, the 4th. By Thursday, I was seeing the director of the neurosurgery department at Johns Hopkins in Baltimore and a second opinion on Friday from a surgeon at Georgetown. They both recommended surgery as soon as possible. It was finally scheduled for June 19th. The craniotomy went well with an expected recovery. My follow-up to remove staples was July 1rst. The final pathology wasn't released by then but surgeon was confident it was "likely low grade" and he didn't recommend follow-up treatment. So we went home relieved.
After another 10 or so days, the confusing pathology was released. In short, even though it was mostly a grade 2 astrocytoma, there was some "early anaplastic transformation" so they graded it as a 3, but only barely. The chemo and radiation specialists at Hopkins recommended adjunctive treatment (chemo and radiation together) as soon as possible. It took several requests to the tumor board, more phone calls with all the specialties, and lots of hours talking about whether or not to do the treatment before the consensus was to treat it. Even though the surgeon was convinced he got at least 99% of the tumor out, there was no way to know if the remaining cells are benign or malignant. We treated it as though they were there and were malignant. The specialists said this will give me more time before regrowth.
Exactly 2 months after my craniotomy, I started the two treatments on August 19th. I did 6 weeks of chemo and radiation together followed by 2 cycles of maintenance chemo. After a lingering, alarming side effect (change of taste) in December 2013, I consulted extensively with my doctors and decided to discontinue the chemo treatments.
I returned to work in October 2013 and I am still working 35 hours a week. I studied for 6 months and passed an exam in May 2014 to become a structural engineer. I have follow-up MRI scans every 3 months for the cancer. In December 2014, we learned that there's no evidence of the tumor, no new growth, and no changes since the surgery and radiation. The oncologist is confident that "it will not return for many years, if ever." We are finally breathing a sigh of relief that I will hopefully have a healthy life for a very long time. Even though the oncologist is so positive about the outcome, I will be monitored every 3-4 months for a very long time.
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