Paul and I kicked the kids out of the kitchen last night and shuffled them upstairs so we could spend time on speakerphone with Costas talking pathology and plans. The entirety of pathology, genetics, MGMT and other markers are still about another week to 10 days out. What we do know is promising. The piece of shit, aside from from having recurred and grown 20-30%, and teetering very closely to a WHO grade 3… is still technically a WHO grade 2. Pretty fucking unreal to be honest. So let’s all give out a collective “Fuck Yeah!” into the universe.
Thank you GOD… You did us a solid and you still clearly don’t want to punish me for my proclivity for four letter words!
We don’t have a complete pathology report and will have to wait another week to 10 days for that. In the meantime, we count our blessings, keep our fingers crossed and pray that the missing blanks will fill out and complete my pathology report with a fierce fighting spirit and an awareness that the bad ass bitch whose name is at the top of the page has zero tolerance for bull shit.
Regardless of what the final report indicates, our plan is to aggressively treat the tumor with radiation, chemo and any appropriate ancillary treatment options as if the Piece of Shit is a WHO grade 3. We will be kicking its ass with zero apology.
I connected with my neuro Oncologist over the phone last night and feel at ease by her warmth, sincere interest in meeting and caring for me and her attention to detail. My skull and my wound need a little more time to heal before we can commence radiation, however I should have my initial meeting next week at Winship Cancer Institute with Neuro Oncology and Neuro Radiology.
Unless pathology indicates a deviation from current expectations, I’ll have six weeks of daily radiation with Saturday and Sunday off and Oral Chemotherapy for 6 months.
Anti-Seizure (Keppra) will remain a part of my medication regimen and with fingers crossed, I pray it does its job and keeps seizures at bay during and/or after radiation treatment. I’m also saying special prayers that I can avoid re-adding steroids back into the medication schedule. Aint nobody has time for Decadron (except maybe the pharmaceutical company that sells it)!
Exhaustion, nausea, insomnia, coordination challenges, cognitive delay, feeling slow, tenderness at radiation site and possible hair loss are some of the side effects I’ll face with radiation & oral chemo. There will be regular lab work to ensure my platelets are good and my immune system is tolerating the Chemo but to be honest, I am pretty sure I can manage all this, plus some… so let’s all just take this one day at a time!
Have an awesome Wednesday folks. Hug a cancer patient and their family and find something to Cheers. There is always something to cheers for.
My husband has Glioblastoma with resection on 11/04/15, almost 35 months! He was gave 12-18 months with treatment. Sending prayers and love to you. Stay strong💪🙏❤️
You got this!❤️
Thoughts and prayers are with you, Jen. And Keppra works wonders : ) You are an incredibly brave, courageous individual.