What if you are 30 and are in perfect health?

Dr. B called. The UCSF pathology department says my tumor is indeed a grade 2 astrocytoma. He had hypothesized that my tumor may have been an oligodendroglioma--but no. I'm still the same as I have been since I was officially diagnosed in October 2008 and UCSF concurs with the three separate pathologies from Kaiser. Woo hoo!

Dr. B would like for me to maintain communication with him in regard to my treatment and progress. He said, "No offense to Kaiser and Dr. P (neuro-oncologist at Kaiser), but I would feel more comfortable following your treatment." Needless to say, I will be sending him status reports and copies of my MRIs. It would be easier if he just looked at this blog.

I was trying to figure out why Dr. B would want to track my progress--why should he care? As an academic doctor he doesn't get paid any extra for communicating with me. Brett says it is because of my age. What does that have to do with anything? A lot.

There are two groups of cancer peeps: children and adults.

Treatment for children is different, and from what I understand, after age 3 their prognoses are more favorable.

But when it gets to adults with brain tumors prognosis can be a bummer with not many patients surviving past the 3 year mark. That being said, many adults with brain tumors are older, some of which already have health problems or may not live beyond 75, or 80, or whatever, anyway. But what if you are 30 and are in perfect health?

I have everything going for me in the health category (besides brain cancer), so why can't I be the except to the rule who lives a full life unencumbered by a tumor? I have an exceedingly high level of confidence in my chemotherapy (Temodar) and it is going to be awesome when one day they look at my MRI and all it shows is an empty hole in my brain with no tumor residue.

Liz Salmi

Liz Salmi is Communications & Patient Initiatives Director for OpenNotes at Beth Israel Deaconess Medical Center in Boston. Over the last 15 years Liz has been: a research subject; an advisor in patient stakeholder groups; a leader in “patient engagement” research initiatives; and an innovator, educator and investigator in national educational and research projects. Today her work focuses on involving patients and care partners in the co-design of research and research dissemination. It is rumored Liz was the drummer in a punk rock band.

https://thelizarmy.com
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