Just snuck and took a video in my first neurosurgeon's apppointmet at Swedish, in Seattle. At the end of the video you can see a slice of my brain, which includes the brain tumor. Yuuuuck!!! It's gross. Every. Time. I. See. It. The image is from back in April, so it's not even current.
On this Thursday, I have a MRI and cerebral fluid scan to evaluate the growth, and see how much blood is going to the tumor. The fluid scan tracks the metabolic activity which requires more blood than regular tissue.
Will meet with a new neurooncologist after the scan. Then I will upload my images to UCLA's system and hope I get in for next Wednesday's tumor board. It's frustrating that they only review cases once a week. If there's a backlog it can take weeks, even a month, to get results on treatment recommendations.
Big day today, but an even bigger one on Thurs. Fingers crossed that all of my little issues are treatment effects, not tumor growth. I believe in miracles. And in my opinion, it only takes one to change your life.
I was wondering and maybe you have addressed this before but have you ever considered cannabis oil? I was reading an article on it .
ReplyDeleteHi Unknown! Absolutely, yes, I take the cannabis oil just before bed. It can induce seizures for me, so I take it late, it hits while I'm asleep.
DeleteYou don'r need my advice but I'm sending huge love and miracle vibes to you.
ReplyDeleteOh Deborah, I always love to hear advice! But I love even more, your love and the miracle vibes. xoxo Thank you!
DeleteThinking of you guys and sending awesome positive energy your way.
ReplyDeleteXoxoxo
Thanks Marian! Who would have thought that this week would end up being so important. Thank you again for the accommodations for my parents - it's been so wonderful spending time with them. And now they're here for the doctor appointments, and that's incredible!
DeleteMy friend...sending lots of positive energy to you and in hope that you can get into a clinical trial at UCLA💙🙏💙 I go in Nov. for my injection...I will put in a few words for you! 💙🙏💙 why does it seem so hard for GBM patients to get into clinical trials. Is it to much to ask...that we want to survive. Xoxo
ReplyDeleteHi Laine! I'm still being followed up by Dr Linda Liau at UCLA, so if these results demand more action, hopefully she can get me into a good clinical trial. But I always love good word, and I love that you are looking out for me. Thank you!!!! xoxo
DeleteHi Jessica, I always check your blog for updates. I was suddenly diagnosed and had surgery for a brain stem tumor in January. You are so involved with your treatments and educated. It's just nice to read about someone who has been through surgery and the aftermath themselves and feel encouraged. Everything has been going well for me, except recently I was put on lamictal for visual seizures which they say could spread. I'm apprehensive about side effects of seizure meds, such as a change in mood, do you have any experience with lamictal? Hoping things go well in your future appointments. - Julie
ReplyDeleteHi Julie! I'm sorry to hear about the brain stem tumor. Frick! And yuck. As for the seizure meds, I've been on a few different seizure meds, and I was prescribed Lamictal, but my neurologist at the time scared the crap out of me. She called it the "Death Rash Pill". I don't say that to scare you, as obviously, you aren't having that issue. I'm actually researching various anti-seizure meds as we speak, as I'm having more seizure activity as of late. Have you been having any side effects??? I'm scared of side effects too.
DeleteHi Jessica, yes I've been reading about the whole skin falling off side effect haha, but my neurologist put me on a very gradual build up, so I'm hoping that won't be an issue. I have yet to side effects, except feeling a bit more...hyper/amped up at times. Prior to this experience I didn't consider how seizures could be sensory or visual. They really weird me out at times, and I get worried about exerting myself too much and that perhaps causing one. But I don't want to live life in fear/limited, I think I need a bit of balance. Have a good evening! -Julie
DeleteSo maybe the gradual build up is the way to go! Good to know! What kind of seizures do you have? Have you been having sensory/visual ones? I wonder what those are like! I absolutely understand that fear, and the desire to LIVE at the same time. I had two episodes today that I worried could have been sensory seizures. But I don't know how to tell. Do you get an aura for them? How did you know they were an issue in the first place?
DeleteAbout two months post surgery I started having episodes where a numb sensation would march up my arm into my face. It almost always happens at night and wakes me up. I let my neurosurgeon know about it, and he thought I was having seizures so he referred me to a seizure specialist. So in June I had an EEG, which didn't show anything abnormal and the specialist told me I wasn't having seizures, no need to continue medication. I had a follow up in October and explained I was still having the marching sensations and very rarely would have fuzzy bright lights in my peripheral vision. My surgery involved going through the occipital lobe, which lead him to believe scar tissue was causing visual seizures. So back on medication for me. I feel like I've only had an aura once, I woke up from sleep feeling very anxious, and stated pacing around the house. It almost went into what seemed like a panic attack and then the numbness in the arm started followed by flashing lights. Strange stuff. What were you sensory episodes like? Is your aura like a panic?
ReplyDeleteYou know what Julie, I have a BT friend who was having that happen right before bed too! Also waking her up. What you're describing definitely sounds like seizure activity to me. I've heard that the EEGs are somewhat unreliable because we have to have seizures during the time of the testing. Were you told that as well? Are most of your "seizures" around bedtime? (Man seizures are so fascinating, aren't they? And annoying of course, too.)
DeleteYa, my auras are something like this.....(the only way for me to easily describe is by stream of thought): "Something weird is happening. What is going on? Why are things off? *pacing* *walking in circles* *staring* I need ice water. Where are my pills. When did I eat? Where is some sugar. I'm in an aura! Go get my ice water, pills, sugar, go lay down. Call Dan. Or call parents." Then I call someone to be "with" me through the process until the seizure subsides. So aura is more of a warning, but it's confusing too, until I realize what's happening.
I’m sorry to hear about your recent health news, but with technology improving all the time, you are in good hands. You are staying so positive and give me hope as I recently discovered that I have a tumor on my lymph node and am frightened that it is malignant. Be strong in your fight against this!
ReplyDeleteKacey @ Glendale MRI