Another Day, Another Update
We continue to be grateful for the donations coming in. I can see the names of donors but not the amounts yet, as that information goes to the site administrator (Jane). I will get some thank yous out as soon as I can after I see the official list from Jane. Again, so grateful to be building a backup fund for in case insurance never comes through. In the meantime, I will also be putting together a plea for the ERS board, state representatives, and United Healthcare. Once I have that together I will post it on the blog in case anyone wants to use my facts for their own letters.
My lifelong friend, Beth Ratliff, got into town today. The official reason to be in Houston is "business" but I was so happy to get the spend the day with her. We had brunch together and then she took me to an appointment where we were able to geek out over MDA's impressive patient orientation. Later we talked about diet & recipes, hung out, and caught a meeting. Tomorrow she's going to take me to proton therapy before she actually has to go do some work related stuff. I guess if you are on a business trip, you do actually have to do some business sometime...
Proton therapy continues to go well. My scalp is a bit sore, but the doctor tells me it may be less sensitive if I avoid hair conditioner. Done. The radiologist, Dr. Paulino, went over the treatment plan today and showed us how each block of proton beams are entering my brain, where they are targeted, and how much radiation is being applied to each area. I am so happy we are doing proton and not photon. It is so much more precise and since they are going approximately 2 cm into healthy brain tissue, knowing that healthy tissue will be more preserved just makes me feel so much better. After each treatment I may look like a waffle, but I feel really good. Chemo also seems to be going well. No serious issues there either. Overall, I'm tolerating treatment well. Let's just hope Crystal is not tolerating it as well!
Comments (12)
You going down, Crystal! 🖕🏼
Keep up the great work, Shannon! So glad you are getting the proton therapy! Are you aware that there is a 6-year GBM survivor in the Psychology department at TTU?? Thoughts and prayers each day are coming your way!
Thanks for this latest news, as it is reassuring. I'm glad that the treatment is, for the most part, painless, though there is some irritation. You're doing so well, are so brave. Carry on, dear girl.
Love there are no negative side effects to date! I know that Crystal is going down!!!
Shannon, Thank you for the updates. I know it is one more thing you have to juggle on top of dealing with so much, but for those of us who care about you, it means a lot. I’ve noticed in your last couple of posts you have mentioned returning the donations people have given you if the insurance comes through. As someone who has been on both the giving and receiving side, I want to share some of what I’ve learned. First, people are giving money because they care. Look, I know you are strong and self-reliant. I know going through all of this might make you feel somewhat weaker, both physically and emotionally, BUT people aren’t donating money to you because they see a charity case or someone who is weak. People are donating because they LOVE you. They know who you are, and they want to help you feel strong by removing one obstacle that will help you get there. Second, people are sharing with you because they can. No one is forcing them to give. If everyone gives just a little, it adds up. Even a math-phobic person like me understands that! If people can’t give, then they support in other ways. If a person can give and wants to give, we don’t want to rob them of the blessing of doing so. Third, your village wants to support you financially because they know you will need it. The business of fighting cancer is expensive. There are so many costs now, but then those costs don’t stop once you are back to a new normal. Even by Texas standards, the distance between Lubbock and Houston is far. The required checkups, travel, lodging, food, etc. adds up. Plus you’ll be doing it A LOT the first couple of years. You will need money set aside for that. Think of it as a medical per diem from people who care. Fourth, people are giving because they need to ‘do something.’ When someone has a cancer diagnosis, those around the survivor feel helpless. They want to ‘do’ something to fix it, but they usually can’t. We are all required to wait through treatments and time to get to the healing side. Most people want to take action so they can feel productive while they wait. Since becoming a research scientist to find a cure takes a little too long, many choose a different way to contribute to the fight. So it is important to let them. This donation thing is not like giving a wedding gift and expecting it back if the marriage doesn’t stick. You do not need the added stress of figuring out how to pay people back. Your one job at the moment is to continue doing what you are doing to evict Crystal. Our job as friends and family that love and miss you is to find ways to support you while you do that job. We are all in this fight together, and we will use whatever weapons we have at our disposal in the fight. I love you friend and am praying big. Barbie (P.S. Skip the thank you notes too...just seeing you get better is all the thanks anyone needs!)
^^^^Amen & Ditto to Barbie's comments^^^^ Eva A. #EvictCrystal
I ditto, the ditto.....Barbie you said it so well.
Right on, Barbie!!!
so glad you are keeping everyone informed. I like to read what is going on with you and I continue to pray for you every day. Love you. Aunt Annette
No thank you notes!!! Glad all is well so far! Prayers and hugs to you!
Shannon: Sounds like you are absolutely on the path you need. I am so glad. Also, we don't need a thank you note, but we are anxious to see your comments explaining your situation so we can add our voices to what I hope will be an onslaught of indignation for this outrageous situation that can change some minds.
Ok, I hear you all loud and clear. But you should all be aware of what a control freak I am and how important it is for Jason and me to be ethical in all things we do. Also, we are suffering from more pride than we should be. We are trying to put that aside, but we are human after all. Many thanks to everyone who cares about us. Knowing that we have so many rooting for us makes so much difference! Otherwise we'd just be here in Houston. I do enjoy the blog posts, it is just as therapeutic for me as it is for all of you.