Step Right up and Place Your Bets

On Monday, February 25, exactly two weeks after our last visit with the clinical trial doctor we were scheduled to see her again. That appointment happened to also coincide with an annual mammogram, a neuropyschology cognitive evaluation, and some routine blood sucking for good measure. Because what's a trip to MD Anderson without a blood draw?.

First off, everyone knows I've lost a lot of weight. Not because of the cancer, but because of my diet. I'm down about 40 pounds since I started this medical diet and, of course, I've lost mostly in the boobs and butt, which makes mammograms the most incredibly uncomfortable situation ever. Seriously. Maybe more uncomfortable than how you feel when you dream that you get on the bus, look down, and realize that you are naked. Well, actually it may be more uncomfortable because that situation doesn't involve physical pain, but you get my point. It's bad. I've been lifting like crazy and increasing calories to try to put on some weight. Either I had a great technician or I've put on some chest muscle tissue because the mammogram was so much less painful this time. I was very happy. Also, my weight is up a bit. I won't tell you what I weigh but I will tell you that I really want to be over 100 pounds and although it's fluctuating a bit, I'm hitting my goal weight every couple of days (don't hate). In addition to my shoulders, biceps, triceps, and squats, I'm trying to incorporate some chest and gluteal exercises as often as possible. I will build chest and butt muscle so that I at least look female.

The cognitive evaluation seemed like it went fine but we'll see when I get the results back in a week or so. This was my first one since the most recent surgery and since my vision is worse, I had to do a lot of the visual stuff standing up so that I could see the paper. For example, in the trail making task you have to connect dots in order (i.e., draw a line to numbers in order, then the alphabet in order, then alternate numbers with letters 1-A-2-B-etc). For this test I had to stand up so I could see the paper. In one part I knew what I was looking for, but it was on the left so it took a little longer. The nice examiner said she was making notes about my vision. I also took a little more practice for another visuospatial memory task, but whatever. The surgeon had to carve more into my occipital lobe this time, which is the visual processing area so I'm not surprised that I'm having trouble with physical vision as well as visual memory. As a person who has always been a very visual processor, especially for memory, this may be an issue in many situations. When I was in college I found that it was easier for me to visually memorize each slide while studying for exams. Those days may be over for me forever, I may never pass another test. Oh, wait, I don't need to take tests ever again. I have the highest degree I can earn. I give exams now. Yay me!

The last appointment was with the Phase 1 clinical trial doctor, who we have seen three times now. Nothing. She has nothing. We were so frustrated that we just went home, packed up the car, and drove toward Lubbock. We stopped over in Abilene and then drove three hours or so to Lubbock on Tuesday. We'd been home just a few hours when Dr. No Naps' nurse called to talk about next steps.

Apparently a bunch of really smart people at MDAnderson had a meeting and talked about my case. Apparently it was the "tumor board" and my entire team. My team includes anyone who works my case so as best I can tell that includes No Naps (the oncologist), my surgeon (Dr. Amazing Sawaya), nurses, researchers, and anyone else who has worked with me or my tumor behind the scenes. They discussed many options and she relayed to me some of the possibilities. One option is a treatment that has recently been in the news (http://newsroom.ucla.edu/releases/recurrent-glioblastoma-immunotherapy-before-surgery). This strategy involves taking an immunotherapy drug (or two) before and after surgery. If you are like me, you are probably wondering why this wasn't an option for this most recent surgery that I already had. Turns out the turnaround was so fast (a week between the PET scan and the surgery) that there wasn't time to get me on the immunotherapy drug prior to surgery. However, since the post surgery MRI showed a small amount of tumor still in there, the surgeon says he can go in and get it out of there if we go this route. If this is our option that we choose, I will have to go on the drugs, have another surgery that will probably be a little quicker due to the small amount of disease left, and continue with the drugs during and after surgery. Yes, I know, another surgery this quickly sounds difficult. As long as they don't give me the same anesthesia, I'm good. Plus maybe two surgeries in a year would help us on taxes since we NEVER get a medical tax break. 

Other options are clinical trials in other locations like UCLA and Wash U. in St. Louis. I mean, come on. Can't they have something in Tahiti or Bora Bora or Hawaii? I love Hawaii! 

I go back for and MRI and a consult on March 11, which conveniently turns out to be spring break. I look forward to evaluating these options but I want you all to know what my plans are. No matter what we are presented with, where it is, or what we choose, I plan to be patient #1 who is cured. This baby is going the way of the Jefferson ground sloth and it starts with me!

Speaking of being a badass, I've been reading a book called, "You are a bad ass: How to stop doubting your greatness and and start living an awesome life." I do not recommend this book for narcissists, but I do recommend it for anyone who doubts themselves so much that it stands in their way of bad assery. The author is a life coach and all around bad ass herself who has written a step by step guide to changing your behavior and cognition in ways that allow you to get out of your own way to create an amazingly successful life (however you choose to define it). One of her lessons is to just define what you want, invite it, and allow it to manifest in your life. This week, for me, that's deciding that I will be the cured GBM patient, no matter what I choose to do next. This is it. This is where shit gets real. I'm doing it. Now. Feel free to place bets.