Cars, Spreadsheets, Checkups, and More Ambiguity.

On Sunday we drove the long road to Houston for our medical spring break vacation. How exciting to get all packed up in the family car, being fussed at by the “head” of the family, and then be ignored for 9 hours while Jason drives wearing headphones and Aidan plays video games in the backseat. The highlight for Jason is always the gas station hotdogs, while Aidan enjoys stopping for junk food. I typically spend a good portion of the trip complaining about how bumpy and uncomfortable Jason’s car is. I’m pretty sure it has no struts or shocks of any kind. He tells me that Subaru is meant to be an offroad type of car like a jeep and that some people really enjoy “feeling the road.” I mean, if people like that, then why not just buy a jeep? Personally, I prefer a smoother ride with far more comfortable seats with heat and air in the seats that I can control myself. I have that in my own car, but Jason prefers his car because of the adjustable cruise control, ability to stop the car when things are in front, and other safety features that my older car just doesn’t have. Again, especially with my vision problems, it’s important to be shopping for a car with as many radar and camera features as possible. Jason sent me a giant spreadsheet of all the cars he wants me to consider, When I told him yesterday that it’s time to be getting serious about a car he responded with, “I sent you the list and you didn’t even look at it.” Ok, so first off, yes I did. Secondly, it was a little overwhelming for me given my LIMITED VISION!!!!!!!!! I mean, come on! It had like every single model within every single brand of car on the market with columns showing each feature, price, bumper height, the names of the engineers, the vin numbers, sound system details, trunk measurements, and likelihood to be stolen. Ok, it wasn’t quite that detailed but anyone who has ever tried to buy anything with him knows (as would most of our colleagues and any person who has taken my class) that he’s what researchers would call an “information seeker/ searcher.” When we have purchased (3 times) or sold (once) a home, he typically will build a spreadsheet of all of the homes sold within the zip code in the last 6-12 months. Each row is a different address and each column is a different feature (i.e., square feet, garage, BR, baths, etc.). Once all data for all addresses are entered, he then runs a predictive model resulting in a regression line, which he uses to then predict the market value for buying or selling. Although it sounds ridiculous to most people, we’ve yet to lose money on a house. It works that well and his estimates have performed better than websites like Zillow, who claim a similar algorithm.

Now, it’s one thing to do that for something like real estate. It’s completely different when he’s analyzing features that he wants in a hair dryer or a toothbrush. At that point he’s just trying to stand out as a super nerd. So…yes…the car selection spreadsheet was a little much for the person who can’t see anything on the left.

We got in around bedtime and had to be at my MRI at 6:15 AM. I did the best I could but couldn’t get Jason to stop telling me I was late. I will never understand this. It’s MY appointment. No one is holding him accountable. Being 15 minutes late to an mri appointment is fine. Or to any appointment is fine. They typically run behind a little bit anyway because of people like me. Especially on a Monday and daylight savings day. When I was ready, he was in the car in the driveway waiting for me and off we went. Yes, I was 15 minutes late. Yes, it was fine. No one is grading us. It's not going on our permanent record. In fact, the guy in front of me in line told the woman, “I’m late. I was supposed to be here at 6:15,” (it was 6:30). And you know what the woman said?????? Nothing. She just checked him in. Because it’s fine.

After the MRI, I ran over to the blood lab and made my regular donation of 3 tubes for whatever blood tests they needed to run, then we got to go home because our next appointment was in the afternoon. We went home, drank lots of high fat coffee, ate a little food, and then I lost Jason. When I finally found him, he was upstairs napping. Which caused me to notice how tired I was (we really didn’t get a ton of sleep), which led me to also nap. He’s such a bad influence!

When it was time to get up and get to my appointment with Dr. No Naps, I was slow to get going. Jason again went to wait in the car because we were late and that is terribly upsetting to him. We did walk in to check in at Dr. No Naps’ clinic about 15-20 minutes after my scheduled appointment time. Even though no one seemed to care, I did make sure to say, “I’m a little bit late. And it was not because I took a nap and slept a little longer than I meant to. And no one tells Dr. No Naps.” They all agreed to keep it on the down low because they know me there and they know they need to be on my side.

So, the moment you’ve all been waiting for: FINDING OUT WHAT HAPPENED AT THE ONCOLOGY APPOINTMENT! Well, the oncology fellow came in first and ran me through the standard questions, physical exam, and the scan from that morning. His statement about the scan was that when compared to the scan from a month ago, some things look stable, some things look better, and some things are just different. We looked at it and it did look different, but it was hard to tell what he was calling stable, better, etc. We did not get to see the radiology report and I look forward to that opportunity because there is still some stuff lighting up in my two perpetual problem areas (although those areas looked less nodule and less solid than before) and there was some wispy stuff that wasn’t there before. Jason and I were both perplexed but were trying to hold off on making a judgment (or at least I was willing to sit in my nice, comfortable, healthy denial state). As the fellow left the room and we waited for Dr. No Naps, I asked Jason what he thought. He did not give a very positive response to which I responded, “Well, I’m trying to figure it out too so I’d prefer that you just lie for right now and tell me to not worry until we know more.” He blew that off with, “I would lie to you if I thought that was useful.” Ugh. This man is far too honest. If he’s not making me feel upset, he’s making my current stress worse. In some ways he’s a little disconnected with the emotional world. If you know him well, you know what I mean.

Dr. No Naps came in next, sat down, and started our session. We discussed the scan a little. I stated that I didn’t see much in the way of nodular enhancement. His response was that we could look more closely at that, there may be some “small areas” to treat. I also asked about the “wispy areas” by telling him about the first time we ever met with Sawaya (Dr. Amazing Surgeon) before the very first surgery, the original tumor had a ton of whispy stuff all around it. Back then Sawaya told us it was most likely to be cerebral spinal fluid (CSF). CSF is the fluid that your brain floats in, it keeps your brain healthy by cleaning up debris and damaged cells, and the flow is managed through areas of the brain called ventricles. Well, I also reminded Dr. No Naps that Sawaya told us before the most recent surgery that he would be interacting with the ventricles more than in the past and that there may be some leakage of CSF. I predicted that this could be CSF. Not only did he agree, he added, “This is also like your 10th surgery, so it could just be damage from all of the surgeries and treatments.”

Then we started talking about possible treatments. We vaguely discussed lots of things, but the basics are these. First, he really wants to find an immunotherapy trial and he prefers Phase 1 for some reason. He also suggested that he's not so optimistic about targeted treatments, which are those drugs that can find and target cells based on the markers on the exterior membranes of the cancer cells. Clearly that is not an impossible line of attack (it has worked across all types of cancer and in different situations), but he seems to be much more interested in the immunotherapy angle. He told me once a while ago that he firmly believes immunotherapy will be the answer. Speaking of immunotherapy, as Jason and I were walking into the hospital, I was about 10 feet behind Jason. Not because he insists his wife walk behind him, but because I like to walk behind with the person I'm following a little to my left. If I keep an eye on them, I'm less likely to fun into anything or anyone on the left. Anyway, I saw a man walking toward Jason who looked very familiar. As he got closer I realized that he was Dr. Allison, the MD Anderson doctor who recently won a Nobel for medicine for his revolutionary work in immunotherapy for treating cancer. As he walked past Jason, Jason turned to watch him pass until he was turned all the way around toward me. Dr. Allison had just passed me as well, so I pointed behind me while mouthing to Jason, "That's him!" We were star struck for just a moment. 

So far the Phase 1 people have not been so helpful. We got No Naps all caught up on the three visits with Phase 1 that resulted in nothing. Then he tells us that the clinical trial people have their own tumor board and that he has scheduled a meeting with that board for Wednesday morning (that’s tomorrow) to discuss my case again. Jason asked why the analysis of the tumor was taking so long and Dr. No Naps said he wasn’t sure. I explained to both of them that it’s because the people in the lab know who the tumor belongs to, they know I’m a big deal, and so they are being extra careful and deliberate. No one argued for or against that theory.

The last thing we discussed was an article from Nature Medicine that came out of the research clinic chaired by Dr. No Naps. It’s the published study outlining the treatment option I’d discussed with the nurse last week. In case you missed it, it’s a procedure where they give 2 drugs that inhibit something in the tumor and boost the immune system, then surgery, then more of the same drugs. My question was: what role does the surgery play? His response was, “No one knows. That’s the big question.” So I say, “The only thing I can think of is that giving the drugs early gets the immune system ready, the surgery then damages the area where the immune cells need to attack the cancer cells, and then the damaged areas call the immune system cells in to clean it up.” He looked at me, cocked his head, and said, “That’s my theory too.” So, of course, I said, “See? We are both smart! I could work here!” He actually laughed and said, “You know, you actually could work here. You are here enough and you know enough that we could definitely find you a job. You’d fit right in!” I wonder if it’s like working retail where you get an employee discount. Hmmm……

Well, now we wait until we hear more about this tumor board meeting. I’ve been scheduled for a blood draw for next week already, which is not exactly an indication of anything because I could do that elsewhere. However, it could be a placeholder because they are planning to schedule other appointments between now and then. One thing was clear when we left No Naps. He said that I am “ready to go” on whatever treatment is chosen and basically that as soon as a plan is set, I’d be able to begin immediately. Jason and I both took that to mean I could start as early as this week (though I think next week is more likely). In the meantime, I floated this morning and scheduled another one for Thursday. By the way, Urban Float is going to be on Shark Tank on March 17- in case you want to learn more about their company or floating in general.

This week I will also be working on my online class, trying to hammer out some research, getting some things (like taxes) organized, and enjoying the ambiguity of the journey. I recently heard Christopher Reeves’ wife, Dana, say in a recorded interview, “Alas, illness is a powerful teacher!” Although she died of lung cancer in 2006 after having cared for her husband for nine years, she was correct in her statement. I often contemplate all of the lessons I have learned through this journey and say to myself, “Really? You are so stubborn and hard headed that it takes brain cancer for you to learn things you should have learned a long time ago?!” And then I resolve myself to make absolutely certain that Aidan learns these life lessons without having to have it beaten into him with a crisis. I’ve always said I was not raising him to be a good kid, I was raising him to be a decent adult and not an asshole in hopes that he won’t be emotionally disconnected. So far, so good.