My July checkup was full of positivity

On Saturday we drove the 8 ½ hours to Houston so that I could go to my full day of doc appointments on Monday. Since my last appointments in June, I have been getting acquainted with my temporary Peli glasses and they seem to help in all sorts of situations. I can see people coming on the left, so they don’t just appear in my line of vision and scare the crap out of me. I also don’t see only part of a car coming toward us when I’m riding in the passenger’s seat. Overall, I’d say they are doing a great job for seeing at a distance, especially.

Because I could do my blood work a day early, I decided to go straight to MD Anderson when I woke up on Sunday so that I could be in fasting mode. Although I’m really always supposed to get the blood drawn while fasting, I rarely do because me without high fat coffee and breakfast may be dangerous to myself and others. I was sure that I’d need Jason to prop me up and/or carry me but that wasn’t necessary at all. I did fine. It also helped that they didn’t need more than a couple of vials of blood. When we left the hospital, we met up with our friend and former nanny, Cassie, for coffee, which I needed desperately. Cassie now lives in Houston and just coincidentally was living right down the street from our Houston house. She was Aidan’s nanny for a very long time and then after I got sick she worked for us some, helping me during the day. She once caught me in the kitchen when I passed out from having not eaten on chemo. So, essentially, she’s a member of our family and has been for a very long time.

Monday was an extremely full day. I was up at 5 AM and anyone who knows me knows that I am no morning person. Being up early allowed me to drink my fat coffee, eat some breakfast, and watch the Houston news. There’s just so much going on in a sprawling metroplex of over 6 million. The news can be exciting, sad, and scary all at once. The coffee and breakfast were essential not only because I had a full day, but also because my 8 AM appointment was for a neuropsych cognitive assessment. It was imperative that I be alert and awake. We were running only slightly late when Jason started stressing out about getting there. I tried to explain that he needed to just chill, that no one was going to be worried about it, but he just kept saying, “I’m worried about it. I don’t like being late.” So now I’m back to that Xanax thing. If he won’t practice mindfulness meditation and Zen Buddhism with me, then the man is going to need some Benzos. As I predicted, we got there less than 10 minutes late and had to wait another 5-10 minutes before they were ready for me. The cognitive exams are exhausting but also kind of fun. Lois says that they are exhausting because I’m in there competing with myself to have the best performance ever and I think she’s probably right. When I finished, the neuropsychologist told me that she didn’t expect that I had any impairments whatsoever and to just call as usual in a week or two for the formal results and scoring. When I came out I yelled across the waiting room to Jason, “I got a 100,” which is funny (to me) because it’s not that kind of test and since he’s a measurement and testing guy, he’s fully aware of that more than most. The truth is that I didn’t have any issues, no struggling to figure anything out, no problems or delays on any of the tests. Also, I got all the way through all of block design with no issues, which has only happened a few times for me in the last 2 ½ years. So the take home message here is: STILL SMART.

After that we had to go for my MRI, which was in a different building. We had to have this entire discussion about how to get there because I wanted to walk over and Jason wanted to drive for some reason. Walking over and back was interesting because Jason was all hovering. Ok, so I will admit that the streets we had to cross are extremely busy with traffic and we all know I have a visual deficit, so I guess he has to hover some in those situations. He gets a pass there. The lady who did my MRI was a bit gruff and not all that friendly. I labeled her later as “not MD Anderson material.” I keep saying they need to hire me for one of the following jobs: patient advocate, waiting room cheerleader, staff cheerleader, and now MD Anderson personality fit evaluator. I’ve been able to talk some of the staff into this, but I’m not sure that they’ve spread the word to the top execs yet. So I guess I’ll stay with the job I love and they will just have to figure all that out on their own. Can’t blame me for trying to help them out. I’m always ready to fix any injustice.

After the MRI, we had an hour before we had to see Dr. No Naps and Jason’s stomach was eating itself so we walked back over to the main building and got some food. When it was time we walked up the stairs to the clinic to see my oncologist, who we all know as Dr. No Naps. Not only did they have the blood results from the prior day, they already had the scan results from an hour prior. That’s almost unheard of! The official radiologist report said that the scan was “stable” when compared to the previous scan, meaning that nothing has changed. Since GBM is always expected to change in a bad way, this is a very good result. Dr. No Naps said he wants me to continue with the chemo pill I’m on, taking it for 5 nights followed by 23 days without. I had an appointment with the clinical trial doctor but Dr. No Naps said since my scan didn’t show any progression, I don’t need to be considering more treatment and I didn’t need to see that doctor unless there’s an issue down the road. Therefore, we walked up the stairs to the eleventh floor and talked with the nurse (we ended up getting in 14 flights of stairs for the day), who agreed that we should wait until there is a change. She hugged me and congratulated me on the stable scan. Unlike the MRI tech, that woman is MD Anderson material.

I asked Dr. No Naps if he thought it would be ok for me to get another tattoo and he said the only issue is risk of infection but otherwise it’s fine. I also was told that teaching abroad either as study abroad or as a Fulbright would be fine as long as 1) the duration is such that we can work the checkups and chemo around it. For example, if it’s for 6 weeks or less I can see him before I leave and when I get back. 2) I stick with Western European countries where there is excellent healthcare available. He specifically mentioned that Croatia is out. I think he brought up Croatia because he knew that I’d been there with Kim (he also went there last year with his family and we discussed it then) but what he didn’t know is that our friend, John, almost died there a few years ago because of the crappy healthcare system. So, to sum that appointment up: tattoos are a go, yes to time abroad if I go to a country with a real medical system. I think that’s code for “socialized medicine.” If you’ve never been to a country with socialized medicine, it’s kind of amazing. I realize that’s not what politicians and some media want us to believe, but those people are just scared of anything related to socialism. We’ve had the best experiences with medical care in these types of systems. I’m just sayin.’

Once we were out of there, we picked up the chemo pills, went to the Houston house to pack up the car, and took off. We needed to get out of there as soon as possible because Jason had to be back for class on Tuesday before 6 PM (or so he thought). We originally said we were going to stop in Waco but then Jason decided he wanted to go to DeLeon, TX and stop for the night. He found a motel and made a reservation before I declared that we needed to renegotiate. I mean, come on. I’ve stayed in a lot of dives when I was much, much younger and had far less. We even stayed in bad hotels in grad school because we were on a very tight budget. But now? Now I’m apparently a total snob about these things. I have to have a nice, comfortable bed. Plus I have a compromised immune system. It needs to be as clean as possible! After I whined a while in the car, Jason canceled his reservation and made a reservation in Weatherford, TX at an Econolodge. I didn’t feel like that was much of an upgrade and I couldn’t figure out why he was being so tight. At one point he said, “But it’s only $50!” Seriously? We are making decisions like this because you’d rather pay $50 than $100? Well, ok then. I talked him into canceling that one too. We just decided to drive a while and eventually he decided we’d drive to Snyder, which is just about 2 hours from Lubbock. There we found a fairly new (or newly remodeled) Comfort Inn that wasn’t expensive by my estimation. The beds were very comfortable, the room was immaculate, the breakfast was hot and within my diet restrictions, and we only had a 2 hour drive in the morning. I’m glad we hurried back, but it turned out that Jason’s class doesn’t start until Wednesday at 6 PM. Therefore, I had some much needed downtime and he was able to go into work. So, I guess it worked out. Lastly, our guy over at the radiation center who has been helping us fight insurance told us that our refund is imminent, maybe as soon as this week. Maybe after we get that, Jason will stop trying to make me stay at motels. Overall, the trip was full of good news all around! I can’t say that all trips down there are quite this easy. There is always the possibility that I’ll be held hostage by a clinical trial or more testing or whatever. You just never know how things are going to go until the scan and blood results are in. I’m feeling good and will start the chemo pills later this week.

My next checkup is in August. I’m trying to get an appointment lined up with the occupational therapist that was recommended by the neuroopthamologist so that I can be evaluated to drive. I was told that they will do a 2 hour assessment followed by 2 hours of driving with an evaluator. I have to drive around in one of those student driver cars where the passenger has a brake pedal. I laughed so hard because we used to make fun of those people in those cars learning how to drive. In Kentucky, driving school wasn’t mandatory. Apparently in Texas it is, so Jason and Cassie both told me about how they had to drive those cars around Houston every day after school until they passed driving school. I refrained from teasing them about being nerds, but I really wanted to. Next trip to MD Anderson will be early August for another checkup. Something I’m doing is working (probably the diet), so I’m not going to change a thing.