Off to a Good Start

The first few days in Houston have started off very well. I’ve completed the first of four SBRT treatments, and not only has the food met or exceeded expectations, I now have a license to eat (not that I needed it)! Steve, my mom’s partner who married me and Aiday, came to Houston for support, so we got to explore Houston together as well.

Fortunately for me, even though it wasn’t on the appointment schedule, I was able to meet with Dr. Phan after my radiation session. I had a few questions and concerns about the treatment and how it went (detailed below, as it was different from expectations). He gave me the good news. First, he said that things looked great - my positioning in treatment was really good and they were able to maintain a 0.1mm precision. I asked him about the tumor growth rate. He said the the volume growth was only 5% (I feared it was 400%+) and since the radiation plan had to cover that area anyway, it didn’t change the plan. We also discussed some expected side effects and things I can / should do to make sure the treatment is most effective. As far as food and eating, he said that I should be able to have my normal diet and don’t need to worry much about spicy or acidic foods - they won’t affect the radiation and my mouth shouldn’t be sensitive. I also asked him about alcohol and whether I can have a glass of wine with dinner. Initially, he said that there isn’t data about it and that’s it’s safer to abstain, but when I told him I was going to dinner at Pappas Bros Steakhouse, which has a huge wine list, he sort of lit up. He said it is a place he likes himself, so he allowed me to have 1 glass of (fine) wine but then I should abstain for the duration of the treatment and then two weeks after. He also told (prescribed?) me that I should be eating 3000+ calories a day during this treatment. Thus, I am going to over-order, indulge, and visit many places all under the guise of it being “medically necessary” - this will be a guilt-free week of sampling Houston’s cuisines. Dr. Phan shared some of his favorite places, and good thing I have reservations at some of them. Not only am I trusting him with my medical care but also with food recommendations as well. I was on quite a high when leaving MDACC.

Going back to the start of the day, I had three appointments scheduled starting with a blood draw, then a visit to oral oncology and finishing with the radiation treatment. After my adventure getting blood drawn for the Stanford EBV test, this was much more straightforward. This is for the EBV test that I requested. The EBV test from the sample drawn at UCM on 9 August came back with a detectable level - 56 IU/ml. So I’m glad at least one lab (UCM sent their test to Mayo Clinic, which also uses the COBAS 6800 system) showed levels. This result also seems consistent with the NCC result, as the NCC tested detected EBV, but the level was below their 69 IU/ml quantifiable threshold. I’m not sure if the EBV levels are rising, so this test at MDACC could provide insight into that. I think I’ll still likely get both EBV tests going forward, since there are sensitivity differences arising from both the test methodologies as well as the testing laboratories. I want all the information I can get.

My visit to oral oncology went smoothly as well. I received my acrylic radiation stent and my new fluoride trays. They also gave me molds of my teeth (I guess in case I needed to have more trays made??). During my treatment planning sessions, the radiation stent was a wax piece, which had some give. This finished stent is clear hard acrylic. It took a little getting used to, as my top teeth didn’t seem to have as much to sink into, so it felt like my lower jaw was more free to move. It just wasn’t as comfortable, either.

The fluoride trays are something I’ve used before, so I’ll go back to that. This will change my oral hygiene routine a little bit. I’m currently brushing with 1.1% fluoride toothpaste twice a day - no rinsing and no eating/drinking for 30 minutes after brushing. With the new program, I can switch back to a regular toothpaste (which will allow me to rinse and spit). I have to use the fluoride trays just 1x/day for 10 minutes, followed by 20 minutes of no eating or drinking. In a way, this may be more convenient, even though the trays themselves are not as easy - it’s hard to talk while they are in. The visit was with Dr. Aponte-Wesson and Dr. Salazar (fellow), and they were both very positive and optimistic.

It was now time to start the radiation treatment, scheduled for 11am. I walked over to the Radiation Treatment Center and had a slightly different check-in process. Up until now, I had only seen the MDACC doctors for consultations, but I became an active patient receiving care. I had to go to the treatment check-in location (in the basement) and get my red radiation card. This is what I’ll scan each time I check in for radiation treatment. Also, since I’m receiving radiation, I get to use the complimentary valet parking service just outside the treatment center (vs. parking in the public garage and walking 10 minutes through the main building to get to radiation center). That’s a little bonus.

I noticed in the waiting area that the radiation treatments were scheduled 30 minutes apart (they showed the schedule for the specific machines, not a combined schedule), which made me think this really would be quick and efficient. I’m familiar with the radiation treatment process, so when I got called back to the radiation room, I changed (just had to take off my shirt, remove my glasses and mask) and laid down on the table. I put the radiation stent in my mouth and then the technicians put the mask over me to keep me in position. For SBRT, they take the CT scan, which is reviewed by the doctor before treatment starts. I felt pretty good during this process. Despite some congestion earlier in the morning (likely from travel and / or hotel allergies as it cleared up throughout the morning) and the new stent, I wasn’t uncomfortable. After a few minutes, they said the doctor was behind schedule, so they took off my mask and stent, so I just lay on the table waiting.

Once the review was completed about 10 minutes later, I put the stent back in and the mask went back on. For some reason, the stent position felt a little different this time. Also, the mask wasn’t attached properly by my right shoulder, so I had to signal to them to come back in and clamp it down. It still felt a little looser around my shoulders than it did previously. It was now time for treatment, which based on my previous understanding would only last for about 7 minutes. I tried to get into my usual quasi-meditative state - trying to relax and stay as motionless as possible.

Before starting treatment, the technicians had asked what music I wanted while I was getting treated. I hadn’t thought about this before, and the first thing that came to my mind was Radiohead. When the treatment started, “High and Dry” and “Fake Plastic Trees” played. I figured that would be 7+ minutes, so I should have been done. But then more and more songs started playing while I didn’t hear the machine moving, so I wasn’t sure if there was a problem. Then the technician came in and said I had 3 more minutes to go. That seemed odd. Fortunately I was still feeling fine under the mask.

Finally, she came in and removed the mask and said I was done. There seemed to be problem with one of their computers going down, which caused the delay. It was now 12:13pm, so I’d been in the treatment room for over an hour! I had been under the mask for at least 40 minutes. I noticed that the mask was on tight enough that it left a mark, especially on the right side of my forehead.

She said that Dr. Phan would see me after this session, so I was hoping that none of my concerns - positioning, longer duration on the treatment table, computer issues - caused any issues with the treatment. Fortunately, Dr. Phan reassured me that things went great - he was very pleased with the positioning and he showed me some of the images of the treatment plan, as well. It was an excellent start to the treatments.

Eating & Rothko Chapel
Since I left MDACC about 45 minutes later than expected, and I hadn’t eaten much that morning (since I wasn’t sure if there were any radiation restrictions), I was quite hungry after radiation. Since we had the steak dinner coming up, we decided to switch plans from BBQ and instead headed to the breakfast klub, a place that serves breakfast/lunch (closes at 2pm). I ordered the signature wings & waffles, and it hit the spot. The wings had a crispy batter and juicy meat inside, while the waffle was moist and fluffy. It was also quite a friendly place - turns out the guy who greeted and said goodbye to us at the door was the owner.

After lunch, we had a few hours before dinner. I decided to go back to the Rothko Chapel (https://www.rothkochapel.org). This is a place I’ve visited before, but it felt different this time. I’m not a religious or particularly spiritual person, but this space has a meditative and meaningful aspect to it. Mark Rothko, an abstract expressionist, is a favorite artist of mine, and I’ve been to the Rothko rooms dedicated to his works at the Tate Modern in London and at the National Gallery in Washington, DC.

Being present is an aspect of the chapel I really appreciate. Before entering, there as signs asking visitors not to interact with technology (including no photographs at all) and not to talk. The chapel really is a quiet escape from the surroundings - the noise of the city, the Texas heat (it’s been over 100F every day), and all the other distractions in your mind. For me, it’s a place for reflection and quietness. There are 14 works in the octagonal interior, with some walls having single works and some having triptychs. Most of the works are monochromatic in either black or purple. However, there are subtle variations in color and texture. Some have more vertical brushstrokes; some have more horizontal brushstrokes. To me, the effect is mesmerizing. As I sat there and looked at a single work, I could see more and more the longer I looked. (Granted, the adjustment from the bright sun to a darkened room may have played a part in the first case of this but it happened with all of the works.) The art also had an interactive aspect. Depending on where I stood - distance and angle - I would notice different features. When I walked around the room clockwise, I would notice different subtleties that I didn’t notice when I walked around counter-clockwise. The work revealed itself depending on each moment. I do plan to go back on a different day and different light (i.e. morning vs. afternoon), so that I can have an experience where the sun and light interacts with the works differently. I’m sure I’ll be visiting the Rothko Chapel during future return visits to Houston.

Since it was about 2 hours since lunch and I needed to keep up my caloric intake, we figured it was ice cream time! We went to Craft Creamery for a fix. We had already had some of their ice cream in the milkshakes at Burger Bodega, where we ate dinner the previous night. The smash burgers were really good and crispy; the fries were excellent; and the mango lassi milkshake was especially noteworthy, so I figured to get more ice cream. Once again, we interacted with the chef/owner of the place and enjoyed his creations. All of his ice creams are custard-based (with egg yolks) and he had some unusual flavors, including brisket and cacio e pepe. I tasted those, but opted for more traditional flavors - an orange creamsicle and strawberry basil.

After resting for a little bit (quite an active day 1 in Houston), it was time for the main event - steak dinner at Pappas Bros Steakhouse. It seemed like an appropriate place to celebrate Steve’s retirement. The restaurant is an OG Houston steakhouse known for its wine list (206 pages) and hospitality.

The first order of business was to select a bottle. I had studied the wine list with a friend, and we had found some really interesting values. However, given that I could only have one glass, we had to focus more on the half bottle list (only 2 pages, so much more manageable than the remaining 204 pages). We decided on a 2017 Echezeuax Grand Cru from Mongeard-Mugneret. The somm said it was by far the best half bottle pinot on the list and having a grand cru seemed appropriate for the circumstances. Once we ordered it, the somm came back with “appropriate stemware” (his words), which turned out to be real crystal Burgundy wine glasses from Sophienwald, an Austrian producer of hand blown stemware. The wine was excellent, as expected, and got better with more time out of the bottle.

The steakhouse experience exceeded expectations. Normally, I do not gravitate towards steakhouses, but Pappas Bros reminded me how they can be so good. The service was exceptional - they anticipated needs and were subtle and approachable. The food itself was also fantastic. Our server explained how they age their beef, which is all USDA Prime grade and all of it aged in-house, so they have full control. The bone-in steaks are aged for ~21 days, as the bone starts to break down after that. The boneless dry-aged cuts are aged for 38-40 days, so they develop more umami flavor but before they get that “funk" note. The restaurant displays their meat cuts in a counter when walking in, so we had a preview. Steve decided to order the bone-in filet mignon (the server recommended “medium rare plus” since the steak gets rarer near the bone) while I went with the dry-aged ribeye (normal medium rare). Of course, the steaks arrived perfectly cooked and seasoned. Unlike other steakhouse, this one does not offer any sauces for the steaks - they all come out with just salt, pepper and butter. That’s all that’s needed for their steaks, as they had some much flavor from the char and aging.

Before the steaks came out, we had ordered the one of the appetizer specials - thinly sliced Spanish octopus with arugula and aioli and turtle gumbo soup. We really like both of these, but wanted to save room for the main event. In addition to the steaks, we also opted for the potatoes au gratin. This was an excellent version and super rich. As an added bonus, there were bits of bacon hiding beneath caramelized béchamel and cheese sauce. While very tasty, the potatoes did not get finished, as focused on finishing the steaks and decided to take the au gratin potatoes back.

We knew we had to get dessert. As our server said, Pappas Bros is place for indulgence. Also, the maitre d’ stopped by at the beginning of the night to let us know that dessert was their treat for celebrating Steve’s retirement at their establishment. Our server brought the dessert cart out, so we got to see almost all of the desserts (except the cakes that were deemed too tall to fit on the cart and show). We decided to get the key lime pie. The restaurant pulled out the stops, so there was a “Happy Retirement” inscription on the plate. At this point, we didn't have much room left (seems like my normal stomach was pushing against my dessert stomach and making it smaller). We threw in the towel after a few bites, with another item for the goodie bag to go into the condo fridge for later consumption.

Overall, I would definitely recommend Pappas Bros Steakhouse as a place to celebrate and especially for those interested in wine, as there could be incredible values in their wine list. The restaurant takes a standard mark up to their cost (results in around 100% above retail, so less than other places where wine is 2-4x+ the cost of bottle). In some cases, the restaurant might get a really good deal on wine or there could be older vintages that are still available, so there are good values on the list. Their cellar includes bottles as far back as the 19th century and lot of options for wine from the best vintages from around the world.

Overall, day 1 in Houston got off to a flying start. Not only did we get to visit excellent restaurants, but I got to visit a favorite quiet spot. To top it all off, meeting with Dr. Phan to hear that the treatment went very well from his perspective was great news. It’ll be hard for the rest of the time in Houston to top this, and hopefully treatments will continue to go smoothly and effectively.