A Very Long Update On A Very Long Day

Check up day was exhausting. We must have walked back and forth from one end of the place to the other five or six times. I think the schedulers do this on purpose to make sure you are getting your exercise in. Now if they'd just have nutritious food in the cafeteria, I think they'd be on to something. Seriously, although the food tastes good, I have a very difficult time finding anything of nutritive value. Especially on my keto diet. You'd think they'd have more variety. They must have outsourced to Germany or France (just kidding European friends- I know Americans eat worse than Europeans). 

First we had to go to the lab to give the blood so that they can see that I'm not pregnant and that the chemo isn't affecting my kidneys or liver. There were three blood draw appointments on my schedule, which made things a little confusing. Apparently some of the schedulers still have not figured out the medical records system that was implemented in February (maybe they should outsource this also). So I show up for the blood draw that usually is quick. There were at least 200 people waiting. No joke. Knowing that if I waited I wouldn't get to my oncology appointment, we went straight to brain and spine. We waited there for an hour then realized that they needed the blood results before my appointment. We left there and then waited for over an hour for the blood draw. Guess what? I'm not pregnant and my kidneys and liver are doing fine. My lymphocytes are a little low, however, which means that my white blood cell count is low, which means that I could be susceptible to infection. I guess I'll be working from home more. Also, if you are sick at work don't come to see me. I'm very fragile apparently. For the first time in my life.

After the blood draw we drove over to a research facility near where I had my proton therapy and had a 3T MRI. I love the fancier machines because they are more comfortable to lay in, give much clearer images, and make me feel fancy because they cost so much. I figure nothing but the best. The technician told me that the scan is part of a study where they are able to detect any change down to the millimeter. He also said being in this study is a good sign because the people in this study "are doing extremely well." I appreciated his telling me this, but then I started picking the statement apart. Maybe it's selection bias. If they choose people for the study who are already doing well, then it looks like it's the study. Or it could actually be that the high resolution scans allow them to handle any changes that occur much faster. All I know is that people with anxiety shouldn't have cancer. It's very stressful. 

I will learn more today about whether this study that involves the MRI is the one clinical study we originally signed up for or if it's something different. Since they appear to be using it for diagnostics and the original study was about side effects, it's hard to tell. Either way, though, I'm in. Another really cool part of this is that oncology wants a 1.5 T image every 8 weeks and radiation oncology wants a 3 T image every 8 weeks and they are off-cycle. Therefore, I will have a scan every 4 weeks. Since I know how to read the scans, this is a researcher's dream!

After the scan I was finally able to see the oncology team. As I said, they are a bit concerned about my lymphocytes and they are putting me on an inhaler that will help protect me from lung infections. What's one more thing to add to my full time job of cancer? I'm starting to feel a little high maintenance.

The oncologist also went over the scan with us and compared it with the one from May. So they didn't order the scan but downloaded from the system and used it. Although it isn't the case at all, it felt like they were being all shady. Especially since they were talking smack about the 3 T, which tells me that they just don't know how to read or compare the scans. It's almost comical: they hate the 3 T scans and they didn't order them, but they used them to evaluate my progress while complaining about them. Reminded me of some academics I know. 

I you remember from May (if you need to you can go back and read the blog post), there was a lot of inflammation, some of which was ambiguous. The oncology team was not able to say whether the white areas under contrast were tumor growth or pseudoprogression (which means inflammation that looks like tumor growth). Yesterday's scan was very different from May's scan. The white ring of inflammation was almost gone and the two "nodular shaped" areas at the posterior and anterior of the tumor bed (the area where the tumor had originally been attached to the brain) were smaller and less dense. The oncologist interpreted this as more evidence that the white areas were indeed pseudoprogression and not tumor growth. As we were told before, those with pseudoprogression tend to have a better prognosis. I will spare you the exact numbers because, as you know, the research gives averages for the sickest and healthiest patients. I'm on the healthy end. Let's just say that patients with GBM who had pseudoprogression had a median survival rate that was more than twice that of the median survival rate of all GBM patients. (Quick explanation: pseudoprogression, or inflammation, is usually damage to the healthy tissue from the proton radiation and chemo that is healing. This is a good sign because it means that the treatment is affecting the tissue that is technically healthy but may have some cancer cells hiding in it.)

So, it looks like you guys are going to have to put up with me for a while longer. I guess one way to take me out is to send sick kids in to infect me, after which I will get pneumonia. Also, you could push me down a flight of stairs so I'll break a hip. I hear that tends to take out old men and women (and we all know I'm metaphorically in that category). I guess it's a really good thing I'm not teaching this fall if I'm this susceptible to lung infection. This helps alleviate the guilt I have for abandoning my students in the classroom for a third semester (spring, summer, and fall). The irony is that this year could be my most prolific research year ever if I can continue to stay healthy. That would make me very happy!