Wednesday, January 30, 2019

Medical Update

Thank you for being understanding and patient! I've been very private about the status of my health, but what I'm learning is that me not blogging hasn't removed the questions, the texts, the emails. So I'm thinking it might be easier to revisit the blog updates, that way if people want to know what's going on, they can read the blog, and even comment if they choose to, but hopefully I won't be asked so many direct questions all the time. I've learned that I really value the times I get to live without my cancer always getting brought up in social situations.

Since the most recent brain surgery on 3/3/17 I have been doing regular MRIs, as we track another brain tumor. Radiation and chemo have been recommended at each appointment, but I have declined so far. Now, since I do my MRIs locally in Seattle, then upload them to UCLA's brain tumor board, the only results that I receive is the radiology report from UW. I get zero feedback from UCLA. They don't call, they don't send a report, I just read the official radiology report and compare it to previous MRI reports and make my own decision on whether or not to completely panic or not (ha!).

After reading that radiology report, I wanted to vomit. My entire heart dropped to the floor. It was scary, and I immediately believed that the tumor had grown significantly. I saw, "interval enlargement" and "additional areas" and my head started spinning.

Then I saw dan walk over to a comfortable chair with his phone. I asked what he was up to, and he said he was trying to pull up previous rad reports to compare. (He's so smart!) So I logged into my UW portal that holds all of my medical reports, and we sat there while I dictated the tumor measurements from all the previous reports while Dan wrote them down.

The MRI scans are set at 3 mm slices, so any slight movement of my head 
(which is impossible to avoid) skews measurements. 
So there is no way to get exact quantifiable results with an MRI, it's more of a window.

After comparing measurements, I felt more comfortable. It's never easy living with the knowledge that there is a mass in my brain (possibly, according to the rad report, three masses), but I also feel strongly that I am going to make health decisions based on what feels good to me, not what is expected of me. So basically I'm flying by the seat of my pants. (Kidding, but not kidding.) I'm still doing some treatments, drugs, foods, lifestyle choices, but it all has to line up with my ethos. 

So there we have it folks! A solid, raw, technical health update. Now Emma and I can get back to gardening!

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