Good morning 🌞. It’s been a busy few days. Had a great visit with the neuro eye doctor and he and his staff were amazing. He was so knowledgeable and really helped me understand what my eyes were doing in relation to my brain. I felt like he went above and beyond. I should have 2 pairs of glasses in a couple of weeks. 1 for inside and 1 for outside.
Jet and I went to Sloan yesterday and met with a great Dr from their glio team. I have always been a huge fan of Sloan. They are top notch and we are so lucky to have them in our backyard. Dr Nelson can also be seen in comack which is great. He spoke about more testing on the tumor and biological testing and treatment as well as immunotherapy testing and treatment. Both of which would be for reoccurrence and tumor growth which is inevitable. I then had a second tele health visit with Dr Iwamoto from Columbia late yesterday afternoon. He received all the reports and scans and was able to meet with his team and they are very confident that a 3rd surgery would give me the best possible chance of survival. I would receive a drug called ST 101 for a few days a week for a couple of weeks and then have the surgery at Columbia. I would then start radiation and chemo at Sloan in commack. I’ve been up most of the night thinking about what to do. When this all started one of the doctors asked me what my goal was and I said “to live as long as I can” well that hasn’t changed. Does having a 3rd surgery scare the shit out of me?? Hell yeah it does! I mean I always knew I was hard headed but it’s crazy to think they can crack it open again. But what’s even more scary is having regrets down the road if I don’t have it done. We emailed the dr at Sloan last night to see what he thought. I still have to talk to Michael and my family but honestly I want as much of this fucker out as possible. I did so well through the first 2 surgeries I feel confident. I know that there could be deficits and risks but seriously no matter what
glioblastoma will reoccur and if we can prolong that now what do I have to lose that I’m not eventually going to lose anyway. It’s stressful. And I’ll have to go to Columbia for a couple of weeks and then for the surgery. I asked jet what she thought about it and she said it didn’t matter what she thought because it was my decision. She’s right yet so wrong. It deeply matters to me the one thing I have never felt through out this whole process is alone. I have the most amazing support system and although I’m still going to make my own decisions while I can I want my family to understand.
So physically I’m still feeling good. No pain. Some headaches here and there. Bad night sweats and anxiety so sleep is eh and nights suck. Just tired but I hear that’s going to get a lot worse so I’m not complaining.
Basically just waiting for Columbia to let me know when to go and start the ST101. Could be within the next few days.
I’m happy to be seeing my friend this morning for coffee but I am over the moon excited to see my nephew Joseph who is here visiting from Arizona. I’ve got some London broils marinated and will do a baked potato bar Joe is the oldest of the cousins. Renee’s first born so the first baby on the scene. Like a shiny new penny! Jet and I would scoop him up and take him out all the time. We took him one day to a park In massapequa to feed the ducks. He was probably around 2 maybe 3. In the blink of an eye we were surrounded by geese and ducks. Like so much so we totally lost him in the mix It was a sea of geese and ducks and where the fuck is Joseph?! so Joe if geese are a trigger in any way I apologize
I hope you all have a great day
With love, sunshine and gratitude always
Jeanette XO
🤘
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