Tuesday, May 24, 2016

Scan is Scheduled

We have our magical f-DOPA PET scan scheduled, and possibly the best part (other than the enhanced results) is that insurance appears to be covering it!

Our scan is on June 9th, at UCLA Medical Center. The results will be on Monday, June 13th.

Ha! Makes me laugh every single time.

I bounce from terrified, numb, then a little ambivalent, and finally total denial. That's when I get my good workouts in, though, during the denial phases - so there's always a silver lining. 

Also, you can't beat an excuse to spend time in Southern California! Time with family friends, and ocean breezes. We'll have three full days to relax, and visit, and laugh, and get our toes in the sand. Once the scan is done, it's just waiting for results from there, and there's nothing you can do about that. Might as well enjoy!

Start Now, The Creativity Journal by Kate Neckel

I haven't convinced myself that the tumor has been growing again, even though that's the most probable reality. I have only a few remote ideas about what I will do if I need to revisit my treatment choices, to reevaluate and add more, or overhaul everything. I have no idea what we will do. We're working on a multitude of choices, kind of like a triage, what is easy to add, what can we afford to add, what have we not looked into, what would be synergistic. I've been doing a lot of research, so please forgive me for the lack of communication on my end. If you have an emergency, please put it in the subject of your emails so that I can address it more timely. Otherwise, I'm going to keep chugging along, nose to the grindstone and all that. Thank you for your patience! 

8 comments:

  1. Replies
    1. Thank you SmileyGirl! I absorb those prayers and hugs, and it means a lot that you took the time to send them to me. I'm sending them right back to you too. Oh man, how glorious it is to have support. Thank you!! xo

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  2. How many people don't even know that there's a more accurate scan than a MRI?Good for you Jessica. Thank you for that information.

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    1. Anonymous, I'm so happy to spread the word on the f-DOPA PET for low grade glioma. I think all brain tumor patients deserve to know that there are various tests above a MRI to verify a diagnosis or recurrence before they make treatment decisions. It's important for patients to know that MRIs are a tool, but they can't necessarily differentiate between scar tissue, tumor, and inflammation. It makes me very happy that you found my information helpful! :)

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  3. I'm having very positive thoughts about this. It seems that the first scan always leans to the conservative side but you my dear are on the positive good side. Your parents are very dear to me, and while we've never met, I care very much about you. And I know I'm just one of many. Love, Debbie

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    1. Hi Debbie, thank you! I love your gut feeling, and I love your positive attitude. That gives me great confidence, and helps me relax. Thank you for sharing with me. Sending you love.

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  4. Hi Jessica
    Thoughts, hugs and prayers are sent to you, Dan & your family.
    Yes, people do deserve to know that the MRI is one tool and there is something better. Thank you for sharing the information.
    We have to do our own research and be our own advocates for the right care in anything to do with medical care. We feel if a doctor gets ticked about it then it's time find another doctor who will listen.
    Bless you dear one


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    1. Thank you! Thank you for validating how I feel about our due diligence, and fighting for our health. You're right, if a doctor isn't willing to work with us, or isn't interested in doing everything in their power (reasonably) then there will always be another doctor that will. There are some amazing doctors out there, we just need to find them and share that information with our friends and family. Support the good ones! Thank you, and bless YOU. Xo

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