Monday, April 30, 2012

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.


3 comments:

  1. Once you're well maybe you'll become a How to read an MRI activist and help others through this complicated maze your in. It does seems that if the nurses and onocologist don't really know how to read MRIs they should relinguish their power, not put patients and their families through the ringer like they have with you and your family, and pass the MRIs to the radiologist specialists. You look like this sweet little innocent "girl" to them, but little did/do they know how powerful you and your family are. We're proud of all of you.

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  2. So glad that you and your family are so persistant with the medical community! Hope that you get some answers tomorrow from the person who reads the MRI scans. I still feel in my heart that your path of alternative methods will lead to your cure! Love the picture of you and Danny- you two were definately meant to be together- for many years to come!!!

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  3. Jessica,
    I think you and Danny need to take Joe up on his tickets to a Seahawks game. The Vikings will be in town November 4th. My sister and brother-in-law are traveling from South Carolina for game. I hope to make it to this game. You and Danny could sit in Joes seats. There is NO WAY he is letting anyone root for the visiting team... especially the VIKINGS!
    Rich

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