Hello @barb789123 Welcome to Mayo Connect! Nice to e-meet you here, although I am sorry to read of your diagnosis. I am Scott and my wife was also diagnosed with an oligodendroglioma in her 40s. I was her caregiver.

She, too, after her surgery was greatly impacted, but after intensive PT and OT she, too, regained much of her abilities. It's amazing to read of the advances made in treatment of this type of tumor since her diagnosis -- proton beam was just being discussed at the first of her illness.

As a caregiver I appreciated your comment on how much you appreciated their help. Often that is not communicated! What was it you appreciated the most from your caregivers?

Strength, courage, and peace!

I’m now also in my 40s, but I was diagnosed with my RFL oligo at 30yo. I kept having headaches, but my docs kept telling me it was poor eyesight, migraines, and even when I got pregnant at 30. Yet, it was actually my OBGYN, who I’d worked with for yrs since I had been a nurse, who finally realized “hey, this isn’t right for her, something’s up here” and he was the one who sent me to a local neuro. He saved my life. I’d been to the ER a few times, so sick and with such bad headaches that I couldn’t hardly lift my head. But the ER docs said bc I’d had an MRI 11yr prior, I couldn’t possibly have anything wrong, and they marked me as “pain med seeking”. I ended up having a craniotomy 2d after my daughter’s 1 bday. They got it all, 100% clear margins, but it returned within a yr. My NS told me I could come off Keppra if I remained seizure free for 6m post op. I had, so I didn’t take the last Keppra dose-idk I was supposed to call him for a proper plan to taper off. So, I had my 1 seizure that day driving with my then 1yo. I didn’t have any more for yrs, but I know it was triggered by trauma, no sleep, not eating, extreme stress. I gave myself a bit more brain damage, broke half my face, did all sorts of damage. I still didn’t have any more episodes for yrs until AFTER I got the big jab. I had a few within hrs, then what I thought were febrile seizures hit a few hrs later. Several mon later, I got the big C as a Christmas gift in 2021. But that’s also when my life became extremely miserable and chaotic. I began having changes in the tumor bed, plus uncontrollable seizures and the headaches were horrible again. I was in decent shape still post op, but the C left me physically, mentally, emotionally weak and broken-literally. Idk how many bones I’ve broken in seizures. My mental acuity, clarity, and cognitive ability which had been diminished, but decent given the circumstances were all but gone. I get so tired and easily overwhelmed. Emotional and mental stress has an enormous effect on me now that used to never be an issue before. My neuro team had, prior to 2021/ 22, always planned that when the oligo returns and grows more rapidly, they would be able to do another crani. My NS had done a fantastic job of getting out the 1 tumor to where I’d be a good candidate for a 2 crani, but not any more. I’ve had too much damage to my brain at this point. My NO has told me for the past few yrs there’s a new biologic about to gain approval he thinks I’ll be a good candidate for, but I’m really hesitant. My only treatment has been the crani so they could possibly use a treatment other than chemo or radiation in the future. Really, I don’t think my oligo will be the way God takes me Home, unless I go to Heaven by way of a seizure. Which, I’ve almost un-alived myself more than once that way. Brain cancer has ruined my life-I’m not the same woman I was. I haven’t been the wife I’d hoped. My daughter never got to know me, not really, and it’s robbed me of more than I can say. But, God! Were it not for His grace and mercy. I know He is using me and all things for His glory!