When it was time to leave Houston, Kimmie was in town to visit her dad and the following day we drove to Austin to see our favorite girls that make up the rest of the Insane Clown Posse, as Jason so affectionately refers to us. When we packed up the trunk of the car with suitcases, a small empty area remained that was just my size. I climbed into the trunk to see if I'd fit and I did fit in the spot perfectly. Kim took a picture and sent it out in a group text to let everyone know that she was making me ride in the trunk (of course, in the photo I was flipping her off because that's just how I roll. Along the route, the Texas wildflowers were beautiful. For those who do not know, Lady Bird Johnson raised money for and implemented a program to plant bluebonnets and other wildflowers along the Texas highways when Lyndon served as governor. This is the perfect time of year to see them. When we got to our Austin hotel I got back in the trunk and laid down as if I were asleep and another photo was sent out about how I had been screaming in the trunk for the entire trip. As I write this I'm starting to wonder if these shenanigans are the reason Jason refers to us as he does (i.e., ICP). Eh, probably not.[...]

I've been just hanging out in Houston waiting for movement toward starting treatment for a while now. The first couple of days were not too bad. I saw some former students, watched a lot of basketball (March Madness should actually be called Christmas in March- just my opinion). When I realized how bored I was, I started searching for alumni groups to watch the games with and that's been fun. I never did catch up with the UK group but  I've watched the last three Tech games with alumni. I can't wait to see our Red Raiders in their Finals NCAA championship game. If they win this, the bar we go to is going to be CRAY Z![...]

It's been a crazy week but certainly not in a bad way. At this moment I just woke up from a much needed nap (don't ask, don't tell Dr. No Naps) and now finally getting around to updating everyone, as I've been wanting to for a few days. You might remember that we saw No Naps on 3/11 and we were told that they were working on some things and to stay in town for a few days. Then, suddenly, without explanation, an appointment for "chemotherapy treatment" appeared on my schedule for 3/22. We sat. We waited. We tried to distract ourselves. I could not restrain myself too long before sending an email asking what was happening and "should I stay or should I go now?" (cue The Clash). The reply email was that we had a lot to talk about and that they had several options, one of which was most promising, and it wasn't the treatment we had previously discussed on 3/11.[...]

After I posted yesterday, I saw that an appointment was added to my online schedule for next Friday. The appointment is called "chemotherapy treatment." I haven't heard anything else from oncology since Monday, so I am expecting that they are leaning in a specific direction, they met with the tumor board, someone made a decision, and scheduling was set in motion. I also, therefore, expect to hear from someone on my team via phone call in the next couple of days. So...[...]

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.[...]

I've been fortunate enough to be able to spend just about 2 weeks with my family in Lubbock. I've been able to go to work to see colleagues, meet with coauthors about research, work some in the lab, and (perhaps most importantly) spend time with my giant boy. I am still trying to figure out how he can be 5'11 and built like a brick house. I guess he just got the perfect shuffle of Rinaldo and Bridgmon genes, although I like to take credit for it all because I nursed him forever and then fed him homemade organic baby food. Even then, food in our house was medicine. (Fun fact: the phrase "built like a brick house" actually comes from a very old phrase used to describe men or women, "built like a brick shithouse," which seems like less than a compliment. For men, it means strong and stout. For women, it means she has a great figure.Again, that's a compliment somehow?)[...]

On Monday, February 25, exactly two weeks after our last visit with the clinical trial doctor we were scheduled to see her again. That appointment happened to also coincide with an annual mammogram, a neuropyschology cognitive evaluation, and some routine blood sucking for good measure. Because what's a trip to MD Anderson without a blood draw?.[...]

I've been meaning to put together a post about the conference Julie and I went to. First of all, this is the second time I've been to this conference, the first being a for a poster presentation in February, 2017 in Tampa, I wrote about it here: https://posthope.org/shannons-page-of-hope/journal/210297/quick-update-and-a-very-very-long-post-about-the-very-informative-keto-conference. This time I learned a whole lot of the same content as before. I did see several people I'd met in 2017, I met a few new vendors, and I heard research results that were only slightly more recent, most of which supported the previous work. The poster we presented in 2017 was titled, "On examining the barriers of entering and maintaining the ketogenic diet for cancer patients vs. non-patients: a trans-theoretical (stages of change) approach," and focused on the following. 1) research has conclusively supported KD as a medical diet for treating illness, particularly cancer. 2) There are barriers to entering and maintaining such a therapy for both patients and non-patients. 3) Identifying what those barriers are through qualitative data collection, designing interventions to eliminate those barriers using a stages of change model. 3) Identifying how vendors and other stakeholders can use these interventions to decrease barriers and make it easier for people to enter and maintain a KD lifestyle. Our paper/poster this year focused on how marketing can be used for rebranding KD, so that people think of it as a metabolic therapy rather than a weight loss fad. For over 100 years, low carb/high fat has been used to treat various illnesses by decreasing inflammation, helping a person become fat adapted so that the body doesn't have to rely on glucose (which is a cause of inflammation and the only food most cancers can metabolize) for energy, and increasing efficiency in fat adapted "normal cells, enhancing physical and mental performance. In our paper/poster, we specifically called for the study of where/how those using food as metabolic therapy in this way get their information, who the most influential stakeholders are in this community, and designing a mass marketing message and strategy, with the intent to rebrand the term "ketogenic diet" as a medical diet.. In fact, our title was "The potential role of marketing in promoting KD as the medical diet it has always been." [...]

Not a lot has happened since my last post, however, there is a little news so I thought I'd update all of you. Jason was able to come to Houston for my appointment with the clinical trial doctor. He came on the weekend and we were able to get some things done around Houston. Most importantly, I was able to visit my favorite carnitas supplier, El Tiempo Cantina. Monday morning we got up early and I went straight to the diagnostics lab to get my blood drawn. The last time we saw this clinical trial doctor I had eaten a ton of breakfast before the blood draw and she got concerned about the cholesterol count. Luckily, that visit was just a dry run and it didn't affect anything. This time I wanted to be careful so I got the blood drawn before eating anything, which was not easy to do without coffee. I didn't know for sure that I'd be able to do it without it resulting in assault charges, divorce, or worse. Somehow I made it. Once the blood was drawn, we went straight back home to have coffee and breakfast because my next appointment was several hours later. [...]

On January 15 (3 weeks ago) Katy and Jane arrived in Houston. Kim is usually here for surgeries and although we needed her superior skills of micromanagement, she was not able to come this time. Jason's sister Cass was also able to come over from Austin, so we had some great help. We got up extremely early the following day and drove to the hospital so that we could check in before 6:30. As we were all running a little late and I was feeling like I'd forgotten everything I needed, that was the first time I realized that Kim is the one who keeps us all in line for surgeries and that she was very much missed. We had planned ahead a bit to inform the newbies of what to expect. She wrote a lengthy text describing the basic schedule, needs, and preparatory advice. It was a nice synopsis of what everyone should be expecting and how to prepare mentally for the experience. Since I'm typically extremely busy during the surgery itself, there were things I was unaware of that go on in the waiting area. For example, she kept referring to where they might want to sit, etc., and using the phrase, "for more privacy." I had to tease her that I am not sure what they are all doing out there that they need so much privacy, but that phrase seems highly suspicious to me. I decided that since I'm occupied during that time, it's none of my business. Let them have their privacy.[...]