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.

UCLA Tumor Board

Morning Guys!

Usually you never want immediate results from your doctor. Fast phone calls after an appointment or scan is often because they have something report. You never want something to report. That being said, I received a phone call from UCLA Neurosurgery yesterday morning. They had received my radiology report (in record time - it usually takes weeks) and they were emailing me instructions on how to upload the images. (Good thing I hadn't mailed the disk yet!) They recently upgraded their computer system and after a dead end at the library, I was able to go to my friend's house and upload the report. It took a total of four minutes! Talk about fast. That's way better than the several weeks it usually takes. It's not that the US mail takes that long, it's the web of the UCLA mail department, then the physical disk has to be uploaded by a UCLA employee. And since I was able to bypass all that noise, and uploaded it on a Tuesday, I was told that my brain scan will be up for review today at the tumor board.

Now, we were pretty excited about the UW radiology report of my brain, but after uploading the images, I scrolled through my brain and was reminded of how huge the tumor is. The amount of haze. The thick white area, and the diffuse area which spans, probably, a fifth of my brain matter. It's disturbing. And scary. After the last MRI we chose not to look at the images, it was too upsetting. That means it has been a year since we looked inside my brain. Naïvely, I keep hoping that the tumor has shrunk, but no such luck.

If we're lucky, we should have an update on the status of my tumor from UCLA later today, but most likely it will be tomorrow. There are a lot of patients who will be looking for their results. Lots of anxious people. It's amazing how these results can completely change the trajectory of your life. Sometimes I feel like I'm living in a labyrinth. That I'm constantly standing in the front of two doorways. I never know what's behind them. I never know where I'm headed.

Too Large? Too Dense?

Man. What a week. I've been a busy bee. Happy second anniversary to us...for the brain surgeries, that is! April 27th and 29th (which also happens to be my mom's birthday - yay for mom!). Last Friday, I jogged over to the UW hospital to retrieve my most recent records from my MRI. I always get copies of the actual scan, and then I also get the radiology report which shows the analysis by the radiologist experts. It's important to get copies of the reports because they are constantly contradicting my nurses and oncologist. It's incredibly confusing.

For example, at the main appointment after my MRI, my oncologist haphazardly pulled out measuring instruments to compare my current MRI on April 19th, to the tumor scan in January, during which he showed a couple of millimeters of growth in a couple of directions, telling us the tumor was progressing. But, according to the current radiology report, my tumor measured the same exact size of 10 mm x16 mm x 11 mm.

What gives? Are the nurses and oncologists uneducated in accurate MRI measuring techniques? If so, maybe they shouldn't be interpreting the results in our meetings. Maybe they shouldn't be inferring results and determining treatment until they receive the official radiology report. According to the current report, there is slight growth, however the measurements have not changed. I'm not sure why they would say that there has been slight growth, and yet the measurements have not changed. We were so confused that my parents contacted the hospital so that we could talk to a MRI reading specialist. For the record, this is not a typical or usual occurrence, and it is not encouraged - but my family is persistent. I think most people don't analyze their MRIs quite as deeply as we do, but I think people should. On Thursday morning we'll be meeting with a fellow who constantly reads brain MRI's. We're hoping that he can explain why the measurements have remained exact over the past six months, over three MRIs, and yet they're saying there's growth. We're not arguing because we can see the slight changes, but we're confused as to why the measurements haven't been adjusted.

I am baffled by the contradicting interpretation of the measurements of my brain tumor. Is it really that subjective? It doesn't seem right. They're trying to tell me to do radiation and fry my brain, yet even the doctors and specialist within the hospital aren't on the same page of what we're dealing with.

It is imperative for patients to get their medical records and review on their own. Not only before you enter a treatment, but also because doctors will say there's "no new growth" when that actually means, "not much" or a few millimeters. That's what was happening to me before October of 2011, and that is a serious problem. Let me tell you why: If your tumor is growing, but you aren't aware, you don't know that you should be looking into treatments. According to my bioengineering artemisinin guru researcher friend, there is a point when a brain tumor can be too large or too dense to treat it safely with artemisinin. When he told me that, I almost vomited (he wouldn't have known - we only talk over email). It never occurred to me that the artemisinin might not work. It all started unravelling when we noticed that the three other areas of concern continue to shrink, and yet Hermie grew just a bit. I asked the guru, one of the top artemisinin researchers in the world, and he said that if the area isn't shrinking like the others, it might be too large or too dense to eradicate with artemisinin. AAAAAAAAAAHHHH! Seriously? That never, ever occurred to my simple, hopeful mind. I thought I just needed to find the correct dosing.

So, what have I learned? Well, if I would have been reviewing my MRIs ever since my surgeries, I would have seen the changes in growth, and I would have been able to start the artemisinin treatment to treat my brain cancer. EEK. AAAAHHHH. I'm so frustrated with myself. I realize that it was an innocent mistake, that I didn't realize how much I needed to be on top of my care, but that doesn't fix the problem of possibly missing my window. We won't know for sure until the next MRI on July 19th. I'm not going to lie, the idea of this treatment not working is absolutely terrifying. I'm not willing to give up though, and, deep in my heart I truly believe that it WILL work, but jeez. This is scary.

To change the subject, here's a photo from the weekend that should make you laugh. Danny, Eric (Dan's brother), Christel (Eric's girlfriend), and I went to the Huskies spring football game, and we came upon photos of the two players of the jerseys that Dan and I wear at Seahawks games. How crazy is that? Just another sign showing that we're a match made in heaven.