Johanna's tumor is a grade IV glioma, in progression from a mixed grade 2 oligodendroglioma/plemorphic xanthoastrocytoma. Say that three times fast. I dare you.
How many other glioma tumor patients are out there? Well, each year only 17,000 are diagnosed (which is actually a fairly small number) but the average age of diagnosis is 55. So, Johanna is special.
How did Johanna know she had a brain tumor? Back in 1997, she was seeing black spots on her way to biology class. This soon turned into severe headaches and vomiting. So basically it was like most other people's Sunday mornings in college, but without all the beer and shame.
The second time around things were weirder. Johanna felt as though she had two right arms (and a left arm). This "third arm" would touch her face and play with her hair. Occasionally, a black shadow would move across the right side of her face. After this experience, Johanna confirmed the fact that she did not need (or want) to do any hallucinogenic drugs.
After a second surgery, Johanna completed 10 rounds of chemotherapy treatments to keep her tumor at bay. This time she only enjoyed 14 months of clean scans before her tumor returned this past August. The pesky bugger was discovered on a routine MRI and was removed in her 3rd surgery September 20, 2011.
As had been the case in each prior instance, Johanna was lucky that for her third surgery her tumor was in an operable location and that she had a great team of doctors at Mayo. She had the same neurosurgeon in 1997, 2009 and 2011 and she's pleased to report that his skills continue to improve.
Following surgery she began Temodar (oral chemotherapy), which has been found to be more successful in treating brain tumors than previous options. So she had that going for her. Which was nice. What wasn't nice is that her tumor was considered likely to return, and it did in July 2012. So what do you do when chemo fails and your brain tumor returns? Take new drugs. Johanna is now taking Avastin which is supposed to starve the tumor of its food supply. We all hope this works!
© 2009 Johanna Olson