Share. Connect. Love.
Most of you know that I had hearing aids prior to my diagnosis and that when I woke up from my first surgery, I could suddenly hear. You may remember the story of the crazy conversations and noise all around me when I awoke and how that may have been both the funniest and the worst part of the entire ordeal. I mean, who doesn't want to hear some random guy throwing up? Or some really dumb lady talking about mashed potatoes and oatmeal?[...]
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?! [...]
