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Jan 16, 2019 Latest post:
May 31, 2020
Hi all- For those of you that I haven't told directly; I have a brain tumor, a glioma, on my brain stem. I started feeling dizzy this summer, and realized when I took the kids to the Blue Hill Fair that I couldn't even LOOK at the ride lights without feeling like I was going to fall down. I went to my primary care, and we started weeding out obvious suspects. Eventually, I got an MRI, which revealed the glioma. Like Stacy says- you go looking for horses, but sometimes you find a zebra.
I went down to Dana Farber in Boston in December, to meet with an oncology team. The glioma is on my brain stem, making it inoperable due to its location. Fortunately for me, there is one protrusion off my brain stem into the cerebellum, which offered the possibility of biopsy. I decided to go ahead with the biopsy, which I had done mid-December at Brigham Women's, in Boston. I made it through the biopsy without loss of function and they were able to get diagnostic tissue. So worth it, because not only do we have a confirmed diagnosis, at this point, but they have tissue to culture out to see if there are any features that lend themselves to experimental treatment in the future.
My technical diagnosis is WHO grade 3 Anaplastic Astrocyctoma. For those of you that just googled that- its actually better than the other one they were wavering between (grade 4 Diffuse Intrinsic Pontine Glioma), so I'm actually kind of thrilled to have something that they HAVE a treatment modality for. But, yeah, obviously I wish it were just a sinus infection. Other good news- the pathology revealed that a part of the tumor is methylated, which means it is more likely to respond well to chemo, so I am able to be treated with the most optimistic combination of tools they have available.
The initial treatment, that I am in now, involves radiation 5 days a week at the LaFayette Cancer Center in Brewer (about 45 minutes from me). I also take Temodar, a pill type of chemo, every night. This radiation/chemo combination will go for 6 weeks, then they will have me rest for a month, then they will take another MRI to see how everything went. Looking at the calendar, that looks to be around the beginning of April or so. We will have a much better idea what kind of treatment comes next after we see how I responded to treatment.
We are doing our level best to keep things normal-ish, for now, for Erin and Michael, which includes cooking our own meals and showing up for Erin's basketball games. We have told them that I have a kind of cancer, in my brain, and have updated them all along the way with what we are doing about that (biopsy, starting treatment etc). We are committed to telling them the truth, but keeping it focussed on what we actually KNOW, not speculating about anything further than what we can say for sure. Its a lot to take on board for an adult, let alone for a kid. For those of you who interact with them, please be mindful of the fact that they are dealing with this in the background, and try not to add to their border by discussing it with them, unless they bring it up first. We know you will keep their ages in mind!
Using CaringBridge was suggested by a friend as a way to keep everyone updated, even if I’m not feeling up to individual emails. I still intend to communicate with all of you individually, but recognize that, especially as the treatment wears on, some days I just don't get much done. Both Sean and I appreciate the many offers of food and driving and child care we have received. We are managing ok at the moment, and don't need any help, but we promise we will reach out if/when that changes.
We appreciate your kindness, prayers, support and words of encouragement. Thank you, more than I can say. Rebecca