Our Thanksgiving week started off with a trip to Houston for my checkup. Unfortunately, no real information came from it. I can't say I really know why, but we got very little feedback and still have not seen the radiology report. Each scan is compared to the last scan. My last scan was the same day as my surgery, September 20. That scan was beautiful, probably because I'd just had the surgery. The only thing Dr. No Naps had time to say about this scan, 9 weeks after the surgery, was that there seemed to be some increased flair. That means there are some areas that are lighting up that weren't on September 20. But here's the thing.Anytime someone starts scraping tissue, there is going to be some inflammation and inflammation causes flair. After the last surgery we saw something similar that no one could explain conclusively. That was 20 months ago and here we are again, guessing about what might be going on in there. I choose to stay committed to my diet and exercise, keeping my glucose low. We left Dr. No Naps with instructions to back off on the chemo until we see what's going on with my blood work next week. He says he is looking into different clinical trials, perhaps a T-cell modification trial that is seemingly working for some people. I will obviously have to find out more about all of this, I wasn't able to get much information. I couldn't figure out if the team was understaffed because of the holiday or if they were just in a huge hurry to get to their holiday festivities, but I just didn't feel like I got enough time. Keep in mind that we like to leave there with a list of items to spend all of our free time researching (not that we have so much free time). We are scheduling a follow up scan in 4 weeks rather than 6 or 8, just to see what is happening since this one was on the edge of a mystery. [...]

Being able to spend the last several weeks in Lubbock has been good for me in so many ways. First off, it's basketball season and Aidan has had 2 games so far. Obviously the athletic genes often skip generations. Although Jason and i both like to be active, I think calling either of us "athletic" would be a stretch. However, we both have athletes in our families, so obviously he gets it somewhere. I also suspect that when a baby is born at the University of Kentucky Medical Center, they inject them with blue blood, ensuring that athletics, and specifically basketball, will rule their lives.[...]

Being home in Lubbock has been very nice and I'm so happy that I don't have to be at MDA until 11/20. Don't get me wrong, I enjoy being in Houston and I love my doctors, but I was quarantined and held captive there for so long that I missed my regular life and routine. Jason has been working a lot so Mom came out for 10 days to drive me around, take Aidan to school, and just help out more generally. I was sad to see her leave but I think no one was sadder than Aidan, who she waits on like he's the one who is ill. This morning, for example, he had me up making him scrambled egg sandwiches, something he'd never had until she introduced them to him. He can text her in the middle of the night and she'll bring him water, snuggles, whatever he wants. It's rather ridiculous. I never got that kind of treatment! What's so special about him?! [...]

I continue to feel a little better each day. I guess since I'm on a new chemo and I'm in a holding pattern, I have my illness ever present in the front of my mind. Physically I feel pretty good, I just wish I could stop expecting myself to be where I was before the surgery. I mean, come on. The surgery was September 20 for crying out loud! Here we are a month later and I'm constantly second guessing my energy levels, sleeping patterns, incision discomfort, and food consumption. I've got to stop it. Someone tell me to stop it![...]

I took the new chemo on Tuesday and it was uneventful. It's a lot like the temazolomide that I took for a year in that I take the zofran and then the chemo pill 30 minutes later. I didn't feel nauseous, even though the zofran bottle says I may need it every 8 hours. I felt well enough to go to work all day on Wednesday. I did take off today, however, because I have a pretty full day tomorrow and I don't want to overdo it. As far as side effects, already everything tastes blah and no food sounds good. Smells are also an issue already. I accidentally skipped lunch today, thinking I wasn't hungry and could get by with a snack. Jason (again) treated me like a little kid, fussing at me for skipping a meal. He's using negative reinforcement to get me to change my behavior. For those who weren't psychology majors and those who haven't taken my course, that means that when I start engaging in the behavior he wants (i.e., eating more), he will stop nagging me and treating me like I'm a toddler. That's negative reinforcement- removing an aversive stimulus to increase a desired behavior. I guess that's what I get for marrying a psychologist. [...]

Today I was sitting in my office around 4 PM, looking through some papers, and realized that I was supposed to get a blood draw and start the chemo today. There was some kind of hiccup when they printed out my remote blood draw paperwork and the first form was dated for next Monday instead of today. If I hadn't pulled out the form that gives dates for the actual chemo, I wouldn't have known. I called the nurse in Houston and she said to get the blood draw as soon as possible and that I could start the chemo tomorrow if need be. So now I have to decide quickly if I'm going to do this or not. I'm leaning toward yes because let's face it- if my immune system crashes they will discontinue it anyway and then we will try something else. If there's any chance it might help, I feel like I need to do whatever I can. I had to track down Jason to drive me to the local lab (being dependent is such a pain in the ass) and I got there 30 minutes before they closed. The woman who took my blood looked at my head (I still have a few stitches) and we discussed the brain surgery being just a few weeks ago. She said that she'd never seen a brain surgery patient so bright eyed, with no facial paralysis, walking with no issues, and with such a great looking scar. She said, "Usually there is an indention where they didn't put the skull back together right and sometimes one or both eyes just don't look right." All I could think about was how happy I am that we ran away from Lubbock to get my surgery, that we have decent health insurance, that we have resources to travel, that we have such great doctors at MD Anderson, and that we have so many supporters who help us maintain. I guess if you have brain cancer you maybe shouldn't be worried about a skull indention, however, that's kind of a big deal. What kind of surgeon leaves you with a dent in your skull? That's scary. The woman was so surprised to see me doing well that she wrote down the name of my surgeon and asked me how she would get in if she ever needed brain surgery. I hope she doesn't, but I gave her the information anyway. I've seen people not doing great at MD Anderson, but never anyone like she described. Again, why can't everyone have access to the best care? Or at least high quality care? People travel to MD Anderson from all over the world and people in Texas, even though they get priority, don't have resources to get there. It's just so morally wrong.[...]

It's been only 3 1/2 weeks since my surgery and it feels like so much longer than that. Of course, I've been back and forth between Houston and Lubbock a few times, I've been working more than I should be at this stage in the game, and it's just been generally business as usual with a little added stress. I had some tests last Monday to check my lungs out for the impending chemo. I guess my lungs are in excellent shape, if you believe the pulmonary technician. He seemed pretty good so I'm taking his word for it. I also had a breathing treatment to ward off pneumonia since my lymphocytes are perpetually low. My docs shake their heads when I say things like, "That's just who I am. I have low lymphocytes." That's me accepting the new normal. Why fight these things when you can just embrace it? I flew back to Lubbock Tuesday morning. I found my way around the airport and managed to get where I need to even with limited vision. I get to stay in Lubbock until the week of Thanksgiving! Yay for a few weeks at home![...]

As most of you know, I had my second craniotomy on September 20, 2017. To recap what led up to it, I had over a year of stable MRIs and a "relatively stable" MRI in the summer. This essentially means that there was something in there growing extremely slowly. We tried a clinical trial of chemo that we were all super excited about and it knocked out my immune system. I had to be taken off the trial and then we had to make some tough decisions. Ultimately, we chose a second surgery to see if we could get this small nodule out of there, analyze it, and hope for a more targeted treatment. Ten days later I was back under the care of the most amazing surgeon and human being I've ever met. [...]

Like last time, Shannon seems to be rebounding from this surgery at amazing speed. Buddy and I just got to visit her and Jason for a bit and they are both in good spirits. Today Shannon was freed from all the tubes and wires that she’s been connected to since surgery, and she has been up and walking around a little already. Dr Sawaya stopped by for a visit and was happy to report that her post-surgery MRI is “beautiful!!”[...]

Jason and I were able to visit with Shannon in the post-op recovery room, and she’s doing great, the sassy Shannon we all know and love. Her only complaint was “I have a headache” 😂  They are already moving her up to a regular room and we should be able to see her again in an hour or so.  If things go similarly to last time, she will probably get to go home on Friday![...]