It's a long story, and I'm pretty pooped, but here's a basic overview. The "scan was concerning for active disease". It really isn't the biggest deal, it could have quadrupled in size. There's still questions surrounding imaging possibly being effected by treatments - not likely, but I won't rule it out, I'm always hopeful. We're trying to decide what our next step is (stopping treatment, skipping treatment, adding treatment, etc.). I'm surprisingly pleased with the results. It's not the best news. As our neurosurgeon says, "It's trending toward recurrence"(there are two "nodules" they're watching). She wanted surgery, but we asked for a little more time. I'm not ready for the risk. I'm too scared. If the area is worse in October, we will revisit our options which include the usual suspects: surgery, radiation, chemo, or a combination.
Apparently even my happy kitty socks couldn't save the day, but they made me and my TSA pat down lady happy, so there's that. Sorry that I won't be letting people know individually, but as you can imagine, it's overwhelming to reach out to all you lovely friends, I'd be on my phone for hours. I'm hoping to give a better explanation about the situation in the coming days.
No words but we're all rooting for you.
ReplyDeleteThank you Logan. I think about you guys all the time, hope you're all doing well!
DeleteI don't even really understand what this means, but it doesn't sound good. Know that you are loved and not alone. Whatever it takes.
ReplyDeleteCrap, I don't really know what it means either. ;-) I guess, seriously, it means I need to add/adjust my treatments and lifestyle. Gotta keep the knees bent.
DeleteThanks for the update, Coconuts! Get some much deserved rest for your mind and body. I'm glad you are waiting for surgery only because of the "not sure" status. I'm always amazed that in today's world of instant results, especially delivered in black and white (though PET scans are in color, aren't they?), situations can still be so convoluted. Hopefully after you've had a chance to rest and reflect, you and your team can tackle the options. Love you tons! Criquette & Wacky
ReplyDeleteI love you guys so much!! Your heart just radiates love. It's still such an honor that you keep up on what's going on in my life. You have so many lives that you impact because you care so much. And you're right, these scans are shockingly ambiguous to a certain extent. My neurosurgeon even said she wishes the technology would get better.
DeleteI love you so very much Jess!!!! You are strong and such a fighter!
ReplyDeleteXOXOX, Libbie
Thank you Libbie!! You are a sweetheart! Sending you a big hug
DeleteI can't believe there's a more definitive scan than an MRI. How has my doctor not told me this? I'm a Olio 2. It makes me so angry! Thank you for sharing on your blog, I had no clue. Important information to know.
ReplyDeleteYes, I agree, it's horribly frustrating how little our doctors inform us when it could lead us to different institutions. I feel like, if it's not something they offer, they won't bring up an alternative that helps you because they don't want to lose our business. But this is our health. We deserve to know all of the technology that can differentiate between recurrence and scar tissue/inflammation. I know two people that have had brain surgeries because the doctors said there was a recurrence, and turned out there was no tumor. Yikes! An unnecessary brain surgery? No thanks.
DeleteHi Jess - another Jess here. I have a glioblastoma, diagnosed end of January. I love your writing. I'm hatching a plan to get more $$ for brain tumor research, using patient data. Would love your view. My email is jessicamorrisnyc@gmail.com I also have a blog and will send you details once i've moved it from lotsahelpinghands Great to meet you, even if only virtually. All best, Jessica
ReplyDeleteHi Jessica, I'm sending you a private email right now. And please do send the new blog link when it's been transferred! I love sharing resources.
DeleteThinking of you dear Jessica, Dan & family. Wishing you a relaxed, fun 4th of July. Hugs & prayers sent your way
ReplyDeleteThank you so much! I keep meaning to write an update but between the research, doctors, blood work, blah blah, I keep getting tired of looking at screens and juggling it all. But we've got the protocol 90% ironed out and I'm so relieved. You can tell I'm giddy about it! So thank you, we will absolutely enjoy our holiday weekend. And I hope you have a relaxing, and fulfilling holiday too. Thank you for thinking of me. :)
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