I feel like there is so much to update, but I don’t want to write a novel. Here goes with the Cliffs Notes:
My infusions of Avastin and every 42 days a capsule of Lomustine, supplements, diet, exercise, detoxes, fasting and positive attitude seem to be paying off as we saw regression of the tumor on my last MRI on Nov. 6th. I don’t know if it’s the medication alone or the supplements or the combination, but I’m happy with the results. Eventually I will have to be taken off of the infusions in order to avoid toxicity.
I feel like I must be vigilant with everything else in hopes that it will keep me from having a recurrence or at least keep the recurrence from happening a long time from now.
It was difficult trying to decide which treatment option to choose from, but I was grateful that there are options. I was fortunate to have my cousin here from Austin the day after receiving the news on 9/11 that the tumor had progression even while I was on chemo. That was the first time I have cried at an appointment, but it wasn’t because I was shocked (I had a feeling it was growing). The tears were from being overwhelmed. Do we try to go to Duke and inject the polio virus into my tumor, do I go on a clinical trial, do I go holistic, do I try the Optune cap or do I go with Avastin right here at Vanderbilt. Having the most aggressive form of brain cancer does not provide one with much time to figure out what to do.
After talking with Patrice, my Nutritionist and a lot of praying, I woke up on the 14th with clarity of which path to take, but wasn’t about to just go on meds with no back up and having poor quality of life.
My energy has declined with the medication and being weaned off of the steroids that I was on for nine months. I’m a bit foggy, fuzzy, and clear at times. My joints hurt. I have a high threshold for pain, so I know this hurts. I sound like an old, grumpy man when I have to stand up, but I just remind myself that this a moment in time and this too shall pass. I still exercise, sometimes, it’s just stretching in my bed and I force myself to get up and get things done, live my life, and appreciate every single day.
I’ll be in a short documentary telling my story. I’m learning to paint with watercolors and how to play the ukulele. I even got out to take photos of my beautiful daughters on a gorgeous Autumn afternoon.
I’m learning to live with my new normal of living from scan to scan, taking a ton of pills every day, having to pee at least 3,198 a day, getting an IV and blood drawn every two weeks, not being able to drive (my house has never been so clean), and having some minor physical and neurological limitations. I have to share my life is still pretty sweet. I laugh every day and having a brain tumor has now become normal enough that it’s not the first thing I think of when I wake up and it’s not the last thing I think of before I go to bed. That was starting to make me feel like a narcissist.
I keep on keeping on!
#KOKO
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