Even if Just for Today, We Persevered

Each moment bleeds into the next, with so many responsibilities, so many tasks to complete. It's exhausting. But, today, we did it! This morning, it took walking around the UCLA campus to different departments, a lot of explaining, and some phone calls, but we completed our mission. Thank you to everyone who offered their assistance, and appointments, I didn't see all those until later, but it ended up working out! You guys are AWESOME.

Sometimes in life, no matter how creative, and persistent, you get, you run out of time and options, and I'm just thrilled that we were able to fulfill this need, this desire. 

I completed the pre-op MRI this evening at a UCLA alternative location (Santa Monica). Same style, 3 tesla machine, which was important to me, because I want my radiology reports to match. MRI machines can have different strengths (ex: 3 tesla vs 1.5 tesla), also they can have different amounts of slices (ex: 1mm, 2mm, 3mm vs 4mm). My goal is to keep everything as standard as possible between scans so that they're easier to compare. Anyway, they were able to facilitate the same pre-op scan that was scheduled for Thursday. The functional MRI is still slated for Thursday afternoon, which will determine if I'll need to do an awake craniotomy or if I just get to take a sexy little horror movie nap.

My relief is palpable, if not temporary, for the stress of tomorrow's cognitive and competency testing which will be several hours of mental acrobatics and interviewing. These test are a baseline for when I get out of surgery, to compare any possible deficits. That way they'll know what kind of assistance I may need (physical, language, and/or occupational therapy). 

Wearing Resilience socks, thinking about all the other patients out there in my same shoe....er.....socks?

I'm bone tired, but elated that I was able to follow my intuition, and find some answers in all of this madness. I'm not expecting a miracle of healing (although I never rule anything out), but I am a tangible person who needs explanations and information to feel comfortable about big decisions. 

I understand that I am living with brain tumors up in this noggin'. I'm not pretending anything otherwise, but I feel incredibly capable, and healthy, and before I can comfortably sacrifice my body to the table, I have to feel assured. Even though this is my fourth brain surgery, it has not gotten any easier. In fact, I'm noticing that everything is becoming more difficult. I'm losing my pain threshold, I can sense my body, my spirit, remembering the trauma of all these surgeries, especially the one where I almost died. That pain, that subconscious awareness surged through me today as they inched the MRI needle closer to my vein. It was in the powerful magnet of the MRI that forced every cell in my brain to shift in different degrees, to manipulate my fat cells, and water cells, the tissue forming into just the right image to see what is going on in my head. It took everything in my being to hold back a seizure. To hold back tears of how brutal my body has been and continues to be treated. 

If she [my body] was a person on her own, my poor little Body, I would want to take her by the hand, and pull her close. I would rock her, in empathy, and hum her a beautiful melody. It wouldn't change the damage, but I would do everything in my power to console her. 

She's done so much for me, and I keep abusing her. 

It's not what I want, but my choices are limited.

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.