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Posted 2018-10-11T19:42:58Z

A Whirlwind Trip to Houston

On Tuesday afternoon Jason and I started out on our 8 1/2 hour drive to Houston. Shout out to Pam for watching over our furry boys as well as our relatively hairless one. We got to Houston around midnight only to go straight to bed and get up very early for my 7:30 AM mri on Wednesday morning. Last month the radiologist said that we needed to go with a spectroscopy mri because it's too hard to tell with a regular mri if we are seeing treatment damage or active tumor in the trouble spots. Therefore, I had the fancy one first thing Wednesday morning. This type of mri takes a little longer to do and it requires two doses of contrast dye. If you've ever had gadolinium rushing through your veins, you know that it's cold and makes everything cold as it rushes in (arm, arm pit, etc.) and can make your stomach a little upset. After the scan, we went to the blood lab so that they could do my regular blood panel, which tells us white blood cell count, platelets, and other general health markers. In general, the blood work is meant to test what treatment is doing to my body. After we left the blood lab, we went home to have some lunch because I wasn't scheduled to see Dr. No Naps until late afternoon. I was assuming that we were scheduled late in case the radiologist needed more time to read the fancy mri. We had some lunch and then the double dose of gadolinium caught up with me, requiring some serious bathroom time. 

The nurse of Dr. No Naps called to say that if I could come early, they could get me in earlier. We wrapped up what we were doing and went back to the hospital within an hour. I was a bit nervous but Jason and Lois talked me down a bit with their positive logic: "Well, maybe someone cancelled or maybe Dr. No Naps had a meeting that didn't happen or maybe it's decent news because if it wasn't, they'd probably want you at the end of the day so that he could spend more time discussing things." I tried to just breathe and relax a bit. I have to trust Lois and Jason on these things because they've both been involved since the beginning and they know how these doctors work. 

When we got there, we (of course) took the stairs so that I could get some exercise. As promised, we were able to go back after just a few minutes. First we saw the fellow, who checked me out pretty thoroughly, and then we saw Dr. No Naps. I told him that with the help of the gadolinium, I was well cleaned out and I was ready for my colonoscopy. He laughed and said something like, "Let's go ahead and get that over with." He then said that he and the fellow had been looking at the new scan in comparison to the last scan, 4 weeks ago, frame by frame. He then showed the comparison to us in the same manner. Everything looked pretty much the same to us and apparently to him too because he said, "I don't have the radiology report yet but I am going to call this stable." Then I said, "Well, last time we did this the scan had tables in it with numbers that tell what the composition of the cells is. This statement led him to dig a little deeper and look for those tables in the new scan.  

Spectroscopy is a method that we use in my lab at work so let me tell you in English approximately what it is. Basically spectroscopy emits a particular type of UV radiation (light) into specific areas of the brain and then collects that refracted light for analysis. The refracted light analysis reveals what type of tissue is in that area (i.e., active tumor versus health tissue versus necrosis) In a similar way that archeologists use a grid to keep track of where artifacts and other objects are found in a dig site, a grid is superimposed over the areas being analyzed so that when looking at results, each box in the grid can be examined separately. Each "box" in the grid is called a voxel. I'm not sure exactly how many voxels we examined with Dr. No Naps, but I'd say there were probably eight in each grid and there were two grids, so let's say sixteen. When examining the scans, there is an actual image of my brain where you can see illumination from the contrast dye and in spectroscopy, you can see the grid/voxels overlaid on top of that. Therefore, he could click on a voxel and know where in my brain and how close to the "Problem areas" that analysis would be. As he clicked a box, it shows numbers of chemistry and graphs of the values, which can then be read by an educated individual to determine how likely that area is to be each of the types of tissue mentioned above. 

As he went through different voxels and looked at the graphs, he explained how looking at the graph tells us the chemistry of the tissue. For example, a relatively flat line is indicative of necrosis. Although necrosis sounds bad, in the case of brain cancer, necrosis is great because it is likely to be tumor tissue that has been killed by the treatment (radiation, chemo, or some other treatment). He also showed us a voxel that was not near the problem area in order to show us what the graph looks like for healthy tissue. Using those examples, he then told us what it might look like if an area was active tumor. It was a dream appointment for us nerd researchers because we were able to have our own understanding validated while learning a ton. As he went through each of the voxels one by one, we all watched (Jason, the fellow, and I) as he interpreted and explained why he was interpreting the way he was. In the end, it was determined that there seems to be plenty of necrosis, some healthy tissue, and possibly 2 voxels that were iffy. However, when I said to him, "So, what we're saying here is that there are two possible questionable voxels," he replied, "Well, really there's just one that could be questionable but I'd like to see what the radiologist says." He delayed the start of my chemo for a week because my platelets were a little low, as were my neutrophils. When we were finished there, we went upstairs to the pharmacy to wait for the chemo pills that I'd start a week later. 

We knew it would be a while before the chemo would be ready because when it's something as serious as chemo, there is a complicated process to make sure everything is filled correctly. I've been told that a pharmacist fills it and then several others have to double check that everything was done correctly and that the paperwork is all done right. Since it seemed that we would be wrapping up relatively early, Jason and I discussed whether it would be crazy to drive back to Lubbock when we finished. After all, we'd gotten there at midnight the night before, gotten 5-6 hours of sleep, had a pretty full day of appointments, and would be getting home by midnight, which would be about 24 hours from our midnight arrival in Houston the night before. However, if you know Jason, you know that he's always up for the drive as well as wanting to get back to work the next day so he doesn't have to work remotely or take sick time. Therefore, as I waited for the chemo, he went back to the Houston house to pack the car with the small bags and travel food we'd brought the night before.

As I waited for chemo by myself, I decided to call the neuroopthamologist to see if my peli glasses were in. Four weeks earlier, when I was fitted for the glasses and ordered them, they said that typically the glasses take 6 weeks to come in but that lately they'd been arriving in about four weeks. I called the neuroopthamology office just to check. The receptionist said that the glasses were there and could I come Thursday so that I could be retested with the glasses to make sure they didn't need any adjustments. I explained that we were leaving town, so she talked to the doctor and he said, "Sure, have her come on in." About five minutes later my chemo was ready. I texted Jason to tell him that I was going to uber over to the eye clinic and that he should meet me there when he was finished at the house. When I got to the clinic, the optometrist put the glasses on me and they fit extremely well. He said he did a 10-point adjustment so that they would be snug but not tight. I shook my head all around to show him that they were in no way loose. I promised him that I would make another appointment for the next time I have to be in Houston just to do those tests that he wanted me to come in for on Thursday for. He agreed. 

These glasses are awesome. First off, they fit so snugly on my face that they don't slide at all. My temporary ones, which I still have for emergencies, had to be pushed up all the time. I seem to have developed a habit of pushing them up and now I keep trying to push these up unnecessarily. Secondly, these are glass and not plastic lenses. My vision is so bad (I'm extremely short sighted) that the glass is coke bottle thick. Somehow this translates into better distance vision than with the temporary glasses that have plastic lenses. Even though the script is the same, everything is so much clearer! Third, the prism (peli) is embedded into the glass. The temporary glasses just had a rubber sticker. The embedded prism is way more clear than the sticker. Fourth, when mom and I chose the frames we went for frames with personality. I think we did a good job because Jason went on and on about how much he likes my new nerdy glasses and said that they were more "sexy librarian" than "school teacher." 

As I wrapped up with the eye clinic, I texted Jason to say that I was taking the elevator to the first floor and would be ready to go when he got there. He texted that he was already down there. As I walked out the door, he was pulling up to get me. Perfect timing!

We drove straight out of town and back to Lubbock. We got home right around midnight. In all, we were gone from home for approximately 33 hours, about 17 hours of which were on the road. I'm so fortunate that Jason is willing to go to any length to help me take care of myself and handle this illness! This morning I had to sleep in and have my mandatory day after travel rest day, but I feel pretty darn good. So happy to be home!

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Comments (16)

  • Linda Thomas
    Linda Thomas

    This is fantastic! You seem to have no shortage of energy. Must be those tenacious Kentucky hill-climbing genes. Photo of your sexy-beast glasses?

    7 years ago · Reply
    • Shannon Rinaldo
      Shannon Rinaldo

      I promise to post one here and on FB when I've had a shower and feel presentable. In the meantime, I will text you a not great one.

      7 years ago · Reply
  • Ann Rodriguez
    Ann Rodriguez

    What a great report and such an informative recap - it is so appreciated by the many of us who follow intently your various escapades with this damn condition!! I love that you (and Jason) love the glasses!! So happy for the good MRI results and glad you are home and comfy!! Hugs my friend!!

    7 years ago · Reply
  • Gail Madison
    Gail Madison

    What a great report. When will you post a picture of you in your glam glasses?

    7 years ago · Reply
  • lee keown
    lee keown

    Is it weird how you make all this fun and interesting?

    7 years ago · Reply
    • Shannon Rinaldo
      Shannon Rinaldo

      If you can believe it, I actually made a decision from the beginning of this that I if I were going to have to do this, I wanted it to be a learning experience and something I really "experience" rather than just going through the motions. So, I guess not that weird.

      7 years ago · Reply
  • Pam Patton
    Pam Patton

    Welcome and it is always a pleasure to watch all your critters, not saying that Aidan is a critter. Prayers for you all were answered as usual!

    7 years ago · Reply
  • Jule Gassenheimer
    Jule Gassenheimer

    I think Dr. No Naps should partition for you and Jason to receive honorary neurology degrees. You could follow this up with the paper “Brain cancer through humor: The story of a survivor.”

    7 years ago · Reply
    • Maribeth Dennis
      Maribeth Dennis

      Great idea!

      7 years ago · Reply
  • Lois Kidd
    Lois Kidd

    What great news-and new glasses to boot. You are truly the energizer bunny. But now with sexy, nerdy glasses. Can’t wait to see a picture.

    7 years ago · Reply
  • Kristin Scott
    Kristin Scott

    What a fantastic update!! Enjoy those glasses!

    7 years ago · Reply
  • Sherry B.
    Sherry B.

    Love reading your blogs! U. Mike and I both get a good laugh from you every morning you post. So glad you got your new glasses and I’m sure they not only have personality & sexy but shows your wit and beauty. If you ever decide to stop teaching and go into writing you’d be great. We love you and your alway in my prayers. Tell all hi. 💕😘🤗

    7 years ago · Reply
  • Jennifer Pierce
    Jennifer Pierce

    Agreement on the photo. Does a Dear Reader not deserve visuals? 😎

    7 years ago · Reply
  • Maribeth Dennis
    Maribeth Dennis

    Love your posts! They are so informative & interesting! I'm actually learning from them! Yes, write a book. Namaste

    7 years ago · Reply
  • Cynthia Cain
    Cynthia Cain

    I learned so much about treatment by reading this. Thank you for making the time to write it. It really is fascinating. I think it also helps us when we pray for you. It's like our prayers can focus in on what's most needed the way the radiation might. ❤ Hope you got some rest!

    7 years ago · Reply
  • Retha Keown
    Retha Keown

    sure hope all is well with your scan! and you recover from chemo farely good. Remember your in GODS' hand always.

    7 years ago · Reply