GBM Treatment

 I've been getting a lot of questions about the infusion and other treatments I've been doing/considering.

I had an Avastin Infusion this past week, which is meant to fight inflammation and for me to be able to quit taking steroids which is the end goal.  I may have one or two more of that infusion,we will wait to see how I respond to the first one.  So far I've noticed a marked improvement in my physical abilities however my brain is still half functioning in my opinion.  I'm sitting here right now having to work really hard to figure out what day it is, which I can do, but it is just a lot of mental work..   There are still many doctor appointments, blood draws and telehealth visits that fill the calendar and make it hard to keep track of it all.  This brain confusion remains the symptom that gives me the most frustration and the most tears, feeling like I've lost control of my life, and it's really no way to live, at least not the way I want to live.

Chemotherapy - I've completed radiation and two rounds of chemotherapy. I am cycling what they  call 5/23 which is five days of taking a chemo pill at night when I go to bed and then 23 days off. So far I have had minimal chemotherapy symptoms which is such a blessing.  Every two weeks I have blood work to see how my body is responding to the chemo and then they adjust the dosage based on that. This will go on for five or six months. So we will sneak away to Florida whenever we can in between treatments.

Speaking of which ... Saturday we're heading south with the Stiffney's to give Alli & family a much-deserved Fall Break.  We will be gone 10 days  and I'm so looking forward to no appointments to keep track of.  

Shout out to my therapists, Jamie and Jill who give me exactly what I need each time they come.  Last week I walked on the treadmill at .5 mph,yes, that says .5 for 3 whole minutes and was exhausted.😂  Today Jill massaged my lymph system to get rid of built up fluid.  The two of them are working hard to keep me functioning at a level that works for me.

I am currently waiting on insurance approval for a  treatment option that I have coming up. It's called Optune and it's a bandage cap that I will wear with electrodes 18 hours a day. Power supply is a battery pack that I will need to drag around .  Feels very cumbersome but I will do what is needed to prolong  my life until a cure is found!  I will look a little odd for several months but in exchange I get to love on my grandkids another day, and have them put stickers on my beautiful baldness.   OPTUNE WORKS

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