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

And of 

And 

GBM - Blessings Upon Blessings! October 2023

 This Holy Sunday morning began with me throwing a tiny temper tantrum, all because of a stupid wig-wearing attempt. Silly I know, but sometimes a woman with GBM just wants to feel independent and somewhat pretty (not bald!)

Blessing #1.  I dried my tears and made it to Sunday School - 1 full hour of sitting and soaking in all my dear friends, friendly and loving voices whirling around me.  You absolutely don't know how much you miss your church community until you haven't been there for 4 or 5 weeks!

Blessing #2 Everyone else that I saw before church.  Hugs, chitty chat, promises of never-ending prayers!

Blessing #3 A big hug from my favorite drummer (after Tyler Clark)  :)    

Blessing #4 Hugs from high school boys who found the right encouraging words to say to me.  I've said it before but it's worth repeating, our high school and middle school kids are THE BEST!

Blessing #5 Coming home to a comfy bed for a much-deserved nap!

Blessing #6  My college bestie came from Iowa to stay for the weekend and help out.  Great break for Dave and for me.  And bonus:  Fig Pizza at Venturi's 

Blessing #7 The biggie - After I went to bed an acquaintance  (and I mean that because I don't know her well) had been noticing that I didn't have my usual pumpkins on my front porch steps.  So she thought she could surprise us while we were at church.  How cool is that!?!  My porch is decked out just because someone wanted to bless me!  I'm just sitting here feeling all the feels of love from so many of you!

No more tantrums!  Life is too good for that nonsense!  After all, it's just hair a wig!

Looking ahead to Tuesday for the scheduled infusion.  My expectations are HIGH for that little needle to transport my brain into the functioning/ living organ that it's supposed to be.  And if that doesn't happen there may or may not be a ginormous tantrum and then look for smoke on Amish Highway 35, because my emotions are tender and I've likely imploded. But  through it all I will continue to cling to His promise in Jeremiah 29:11 - HOPE and a FUTURE!