Monday, February 27, 2017

Can't Fly Blind

Been scrambling to get a MRI since Friday, because I know that I can't walk into this surgery blind. I haven't seen what's going on in my brain for almost two months, and things can change. I'm not saying that the tumors are gone, or that they've shrunk, or even that they haven't exploded in growth, but my intuition keeps nagging at me that I must know what's going on up there before I am at peace before the bone saw.

I don't think my request is that unreasonable, however, it's just not how things are done in medicine. Right now, if nothing changes, I'm scheduled for my MRI, and fMRI, this Thursday, the afternoon before my early morning checkin for tumor removal. The problem is that radiology reports take 24-48 hours to complete, and I've been told by my surgeon, and the team at UCLA, that we won't have that report in time for surgery. Apparently the actual radiology report (which measures changes from previous scans, and compares growth, etc. isn't necessary for surgery).

But what if there are changes? I don't even know what's going on up there. 

I don't know why I need this so badly, but I don't want to lose my surgery date, we have uprooted our whole lives, taken time off of work, set up help at our home for our cat, traveled, adjusted, planned, and now I'm told that even with a week's notice, I can't get an MRI to see what's going on in my brain.

I asked for an additional MRI to see if we could facilitate that. I offered to pay if insurance doesn't cover it. We have called facilities all over the Los Angeles area and I can't get an MRI without a doctor's referral. THIS IS MY BODY. THIS IS MY BRAIN. Why is it so difficult for me to get this simple request?? I am the customer. I have insurance. What is going on here, in medicine, that I cannot be an effective advocate for my body?? It is not unreasonable for me to get a 45 minute MRI before a surgery, to be put at ease, so that I can undergo a life or death situation. Let's face it, it's a very dangerous operation. This is not a broken bone, it's my mind they're digging into.

I don't want to push back the surgery date, I don't want to work with anyone other than Dr L. I have 100% faith in her, and I am grateful for her compassion and meticulousness. She's brilliant and I absolutely adore her. I am incredibly grateful for the opportunity to be her patient and to have the ability to get whatever amount of tumor she's able to successfully remove, but I just need to see/know what's going on in my head before I can feel comfortable. I'm even having dreams about it. The desire is permeating everything I do. My intuition is going full force. 

So, dad and I woke up in the 5 am hour and we're headed to UCLA neuro today, to talk to people face-to-face. To be clear (since writing may not convey my tone), I'm not angry, I'm just hopeful that by sharing my deep need, and being available all day, perhaps there will be some people working there that can help facilitate my needs. I know I'm being a pain, and that it's an abnormal request, but I just feel this so deeply. 

My gut has served me in the past, and I won't start ignoring it now. Even if the tumors are shockingly massive, at least I will know, and I can be prepared for what lays ahead.

I call her Mary, our Jasmine vine.
She perfumes us as we leave, and cleanses us every time we arrive.

6 comments:

  1. Hi Jessica,
    I was thinking of you when I woke up this morning thinking about how much I will be thinking of you on Friday (lotsa thinking going on here). It's really nutty that you have to put so much energy into getting a routine test done at your request. All the best today on your campaign. Trust your vibe my friend.
    Xoxoxoxox

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  2. We are so sorry you are having to add this struggle to get an MRI on top of all you are going through. Prayers prayers prayers that someone will listen to you and your need. It's so true that in medicine it is turned around about who works for who. Blessings and hugs sent to you !!!!

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  3. Jessica, you have one of the very best doctors in the world! Put your trust in Dr. Liau. But you have every right to ask all the questions, it's your brain. Sending you many unstressful prayers and hugs to you! Namaste my friend

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  4. A pre op mri should suffice. You don't need a radiologists report. Dr l wouldn't need one to see changes worthy of changing the plan of action. She'd only need to scroll through it during the surgical plan. Which is what they do do. If she saw some changes she would have thought declare them wouldn't she? I've commented less recently because I felt it's what you needed,a break from fellow sufferers. But you're still our guiding light and we are still here reading :)

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  5. Your intuition is right on & justified. Does anyone on the West Coast use the iMRI ? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3514913/

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  6. We are so incredibly proud of you Jess. You are always right on target with what YOU need. You are the biggest advocate of 'self', we've ever seen. We are all learning from you. In turn, we are all praying, sending energy, thoughts, light and massive amounts of love. Always, but especially this week. Hang in. We love you so. xoxoxoxo The KW's

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