It’s been hard to squeeze out an update recently due to what has turned out to be a bladder infection and nagging steroid withdraws (I’ll write this blog post on Tuesday). One thing has not changed: we always receive our news on Thursdays. Another thing has continued to change: we’re getting good news now rather than bad!
On thursday I met with my Oncologist (the week before it was my radiation oncologist) and let me just say that she is amazing. Not only is she excited to work in partnership with our naturopath but she has talked with more doctors from more universities and hospitals from around the United States than I can list off. I can probably honestly say that hundreds of medical professionals have looked at my case; even as far back as June 8th there was a monthly gathering of physicians who all gathered around my case. Their prognosis? That I’d probably not walk again and I’d be dead within a year due to the fact that everything pointed to a glioblastoma cancer. Things have changed.
As of last week the Mayo Clinic has determined that my tumor is a level three astrocytoma (known as an anaplastic astrocytoma). This is huge amazing and wonderful news especially considering that for a month there was no doubt that it was a level four glioblastoma. It’s funny that had we gone into this being told I had a grade III cancer it would have been a sad day–but after you’ve been dealing with the beast known as a grade IV cancer…this is looking pretty good! The jump from a level three to a level four (if I understand things correctly) is huge. While we didn’t speak in these terms–a level four glioblastoma really implies a year of life with hope for a few more. Terminal is the best word to describe it. It’s a beast that doesn’t really die that is constantly attacking your body and moving and taking space, etc. While I have yet to do all the research, a level three is still a cancer that you assume you’re going to live with, but it’s is one that does not immediately imply death. (as many of you know, I am simply writing to you from the medical perspective. Miracles happen that defy all rules and odds.)
The fun of waiting for medical results is not over yet! My tumor slides are in England right now being studied at Cambridge. There are still properties in my tumor that are freaky and odd that they’re trying to figure out. They anticipate knowing more in three weeks, but it will not change how we move forward. On Thursday I start my radiation and chemotherapy–both will last for six weeks. I think its exciting that on the day I start all this good stuff I get to finish the day partying with all my friends and family at the fundraiser down at Pop Culture (if you’re not aware of this email me! firstname.lastname@example.org) It’ll be a great and fitting way to end my first day of treatment–in community.
(Update: interestingly enough a few months after they ruled out glioblastoma they decided to ‘reintroduce’ it as a possible reality. And, in fact, they are treating it as such. As it turns out it can often be much more difficult to diagnose cancer specifics as one might assume.)