Adventures in brain tumors: some ups, some downs

Brain information library overlooking Portland

Another week, another set of appointments.

This week I did a long appointment with an eye doctor, had an ultrasound of my heart, and then checkups with my neuro surgeon/endocrinologist. The eye appointment was excruciating as it involved many dilation drops over a period of around three hours. Once per hour I'd see the doctor or a gaggle of residents for five minutes, then they'd depart with a "we'll be right back" and sure enough, 55 minutes later they would return. Not the most efficient use of anyone's time and not the best way to set expectations. The upside was that I am showing no visual impairment beyond what I've already got. This is great news because if I was having visual field problems, spots, or headaches, that'd mean the tumor is butting up against my optic nerves and surgery would be sooner rather than later.

OHSU has their own bottled water

The ultrasound on my heart was done to make sure I don't have any heart valve issues as some of the hormones I'll be taking could lead to detrimental effects on them. I did the same thing about ten years ago when a doctor thought I had a murmur but I never got the results (UCLA Medical center was a confusing morass back then). I'm curious what my heart looks like now. A highlight of Friday's visits was taking the OHSU tram from the old hospital down to the waterfront.

Blood pressure checks are a new ritual

The results of my last endocrinology appointment came up and it seems that my tumor is responding well to the drug treatments, but possibly too well. While my initial thought on hearing we've reduced prolactin amounts by 80% in three weeks was good, it was too soon to mark that into the win column. Too much reduction too fast could lead to an air gap that would leave me prone to infection and even meningitis. We'll do CT and MRI scans to be sure in the future.

First question: did you take your hydrocortisone today?

After that news there was a new blood draw to check my testosterone, prolactin, and potassium levels, all of which were a concern at my first checkups. Thankfully, I'm now hooked into OHSU's patient extranet system so I'm hoping updates will be quicker than once every couple weeks and can be done over email soon after tests are completed.

6 Comments

  • Thanks for keeping us posted, Matt. A lot of people think about you every day.

  • Yep! We do.

  • Indeed. I dunno if it counts in your world, but I’ve said a few prayers for you.

  • I think it’s cool you’re willing to share this stuff. I went around and around a bit before I decided to do the same. I was going to strip all of my patient related info off before putting any of it out there, but then decided there’s no good way to do this, and I didn’t really care if people knew.
    It’s good you;re doing well. So if the shrinking is going too fast, do they do something to slow this (like less drugs) or do they just keep going and deal with any of the complications that come up?

  • On sharing, I knew I’d grow tired of calling up every family member and friend and relating to them the same story over and over, so I felt like it’d just be easier to blog it.
    Not sure if the tumor is shrinking too fast yet — I have an MRI in two weeks to determine the size and it may not be shrinking at all.

  • Keep fighting Matt.

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