Taking care of GBM business

Here we are again, another month, another scan, another checkup.

“I have known evenings, mornings, afternoons, I have measured out my life [in hospital waiting rooms];” – Modification of The Lovesong of J. Alfred Prufrock.

Jason drove me to Houston on Sunday and stayed with me for my appointments on Wednesday. We were up at 5 AM so I could have my coffee and breakfast and be out the door by 6 AM to arrive for my scan at 6:15. Sometimes It’s as if they are afraid I will think they like me so they sneak in a before dawn appointment just to keep me straight on who is really in charge. On the face of it, it doesn’t seem that bad but when you get there and you realize that you are there before the people running the machines, you have to get back into the mindset that there are rules to learn and relearn. Rule 1: you just show up when you are supposed to and you don’t ask questions. The good news is that there’s very little traffic inside the loop that early (it’s the little things).

After my nap in the scanner, we were off to offer up my blood in exchange for a bruise in the bend of my left arm to match the one on the right arm left by the IV during the scan. You know, it’s important to have a matching set and be symmetrical. The phlebotomist took 13 vials of blood. Seriously, I am not exaggerating. I asked her to count the vials. She said 2 were for the regular blood counts and the other 11 were for “research.” Of course, she said the order didn’t say what kind of research. Jason speculated that they were selling it on Ebay. I think they were drinking it for breakfast. Whatever the explanation, that’s the first time they’ve ever taken that much blood from me. Rule 2: be open to both cutting edge and ancient medical practices, such as blood letting (which has been used for more than 3,000 years).

An hour later we were in the appointment with the oncologist. We had another one of those ambiguous appointments. First off, the radiologist had not had time to read the scan before we got in for the checkup. Without the radiologist report, it’s just a bunch of mediocre “trained” people sitting around a computer screen trying to determine what’s going on. And then they bring it up on the screen and there Jason and I were eyeballing it over the shoulder of the resident. The scans have a software that will allow the viewer to measure any structures they desire to measure, but we didn’t have control of the computer mouse and the resident/fellow measuring was not really doing a great job (she was doing her best, but she’s not a trained radiologist). She was trying to be fast and was probably being purposefully vague, since she obviously would want to avoid giving us bad information (the only information we can count on is what comes from the radiologist’s final report). I don’t blame her for that, so the verdict was just a “best guess” based on what it “looked like” from each of the doctors (and us, I guess). And the verdict was…well, we are just not sure yet and not sure when we will get the report. Rule #3: get used to tolerating ambiguity.

As has been stated before, there could be something going on, but as Dr. No Naps said, “It’s not behaving the way it should.” That’s a good thing! In case you are new to my journey or in case you forgot the realities of this disease, here’s how this works. First off, the baseline assumption is that there will always be growth. Further, if GBM changes, it changes fast, so if it changes a millimeter, it will blow up to the size of an orange very soon. After all, all the doctors know that it doubles in size every 2-3 weeks. Rule #4: assume my GBM will follow the expected pattern (even when it doesn't).

As we all know, mine doesn’t follow the expected pattern and it never has. As far as I'm concerned, it won't. From February, 2016 to September, 2017, I had a small spot grow to only 2 cubic centimeters. After the second surgery, they still knew there was a little spot they couldn’t get and that spot isn’t becoming nodular. It’s looking whispy, though, and no one is sure what that means exactly. If there’s one thing I’ve learned, it’s that sometimes this is as much an art as a science. It could be that I still have some damage from where the surgeon scraped out the tumor bed 4 months ago. After all, I know that I’m still recovering some eyesight, which means the swelling is still decreasing. Studies have shown that after surgery, the MRI can show inflammation, ischemia, etc., as bright areas. However, the doctors are trained to look for tumor growth first and foremost and so that’s what they look for. Any change at all or anything showing up at all is obviously tumor growth. In the social sciences we call this a case of confirmation bias. The doctors expect to see growth at a fast rate, so every change must be growth that is just about ready to explode. Rule #5: dare to be different.

Also, since it always comes back (all doctors know that it does), we must be treating it at all times. Don’t misunderstand, I agree that the tendrils are probably in there and I’m not going to stop being treated. I’m clear that there is no remission with GBM and that we should never stop looking for treatment. But this leads us to the rest of our conversation and meeting with Dr. No Naps. Rule #6: Stay open to all treatment options because it changes like the weather.

He and the team are still looking for treatment options and for the last several months, we haven’t had a good plan for how to proceed. Therefore, after a talk about the lack of available studies and clinical trials, a quick competitive discussion on who has done the most thorough literature review on the effectiveness of available chemo, an admission that he is the highest bidder ofr my 13 vials of blood (he still hasn’t told me what he’s doing with it), and a short session where I instructed him to buy his wife more than flowers and chocolate for Valentine’s Day, we were sent on our way with no real plan in place. In his words, “The current plan is to make a plan.” So, he’s contacting various people to see what I qualify for next, what is available, and what needs to be considered. I should be hearing from him in the next day or so to hear what they came up with, if anything. I’m pretty sure that I will be resuming the current chemo if they don’t come up with something better. Which brings me to my good news: Platelets were up to 139! Whew- I'm not going to bleed to death!

So, until someone from the team calls me to come in, I will be hanging out in Houston making platelets and hydrating myself to get ready for the next bloodletting. Rule #7: Do what needs to be done and never apologize for it.