Progress Report: 11-1-15

A little late, I know.

I had a follow up MRI on the 14th. As expected, the good news was too good. I guess that’s ‘as expected’ from me, really. There is some follow up growth. Not terrible growth, but some growth.

The doctor decided to take me off the Temodar – ‘to save my bone marrow’ – but continue the Avistan with a follow up MRI in 5 weeks. That takes me from every 3 months to every 5 weeks.

We did have another National Brain Tumor Society walk again this year. We were the number one fundraiser for the third year in a row. Woo Hoo! Thank you to all of you who donated to our cause. It means a lot to help this organization reach their goals.

I did make some new friends this year. Josh, who I met through our sons playing soccer together, is writing his own blog at You should go check it out to see what someone else fighting a brain tumor is going through.

I had a few setbacks – explained, I’m sure – with my progress. I’ve had a couple of fainting spells when I was fighting a nasty, aweful migraine. I’m sure it was due to the fact that I hadn’t eaten like normal and it was due to head rushes – bad head rushes. I also had a fall on my way into the Testarossa winery. I’m sure that was a slip and fall due to stepping off the edge of the sidewalk – where there was a lip – and just not being able to catch myself. I’ve also had a few talking misdemeanors (like that…misdemeanors) where I’m thinking one thing and saying something completely different. I’ve become more sensitive to sound. I’m sure I’m looking for everything to tell me what’s happening in my brain isn’t more tumor growth. I’m not sure that’s working very well.

So, to continue with the Avistan, minus the Temodar, with another MRI in 5 (well, now 3) weeks. There have been some minor changes, but I’m hoping they’re minimum.




5 thoughts on “Progress Report: 11-1-15

  1. You’re amazing Karyn! When folks know or hear that I’m a BC survivor, and say I’m loooking/doing great, I tell them about you. Not that it’s about doing/looking great, but that the bravery is in those who are getting through small victories every day!

  2. Hi, I can relate… I just had a recent growth in an area that can affect my eyesight. After 4 years on and off Temodar treatments, it stopped working (as well as wreaking havok on my immune system) and I had radiation. A year later the tumor grew back more aggressively. The good news (not sure it its good yet) is I’m on a trial (AG-20) at Sloan which has been successful in stopping growth in some patients.
    My other option was Avastin, but I’m worried about the side effects. How is it working for you?
    Sorry about your falls.. I’ve had a few of those and my reaction is utter embarrassment, as though that should be the least of my worries… go figure.
    Hope today has been a good one for you.

  3. I was just thinking about you yesterday, Karyn, and then this post came. It’s kinda magic that way sometimes.

    Good for you for seeing the silver lining in everything; you’re pretty amazing. Glad to hear nothing is TOO bad right now. Migraines; yuck. Falls; yuck. A bit of growth; yuck. Sensitivity to sound; way yuck.

    Hanging in there; hurray!!!

    Continuing to send Love; and do let me know if you need help one afternoon a week or something like that.

  4. Pingback: Radioactive Beast | everydayleft

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