visits, blood draws and trials, oh my

Visits, trials and blood draws, oh my. Today is and has been quite the day for me here at mgh. I’m sitting in the exam room here at the research center going through consent forms for research trials. The trials aspect of this disease is incredible as there are a few different forms that each have a variety of options to choose from. MGH is not lacking in that aspect.  There are clinical trials and research trials. First the clinical’s. So these are the drugs, man. The exploratory drugs that could potentially save my life, or, potentially turn my skin and eyes blue. (I’ve opted to pass on that one though, hard pass). Currently there are three trials running that could possibly work for me, one of them being the blue man group trial. So I have two that I’m looking into. I will be screening for one today, called np001 so I’ll focus on that. This is an infusion that showed to slow or halt progression in some individuals during the phase 2. Now, these individuals had high levels of baseline neural inflammation. Therefore, this phase of the trial is looking for those individuals with high baseline inflammation. Soooooo, weird but do I sit here and pray for neural inflammation? I’m not sure. It makes sense that if I could slow or halt this thing with an infusion, I want those high levels, but I have to imagine there is a host of other issues involved with neural inflammation. I can’t help but draw a comparison to our recent presidential election. I honestly don’t want either of these things, so which is the lesser of two evils. Do I want the Trump inflammation and the slew of other issues that could potentially go with it. Or the same old thing with Clinton and no clinical trial due to me not having that inflammation. Am I good where I am? Maybe it’s a stretch. I do not know.

Onto research trials. So I’m screening for a bunch of different trials today. These trials won’t necessarily help me out in any way, however they do provide my data for a better understanding of the disease. I feel pretty strongly that if it’s not too time consuming for me I will do everything I can to help. I’m currently enrolled in a research study called eat more. You heard right kids, EAT MORE. The idea is individuals who are a little overweight seem to last a bit longer and do a bit better. So they’re studying the effects of having one on one nutritionist meetings, against logging and tracking food in an app. I randomized into the app group. That means, woohooo. I get an iPad. A shiny new iPad just for me. Everything is coming up T! It’s interesting that for all these years I have been eating clean and healthy in order to lose weight, and now I have to eat the same way, but GAIN weight. When I first found out about my diagnosis, we knew I couldn’t lose weight so we came up with the number 3000. I have been eating 3000 calories a day since July. Do you know how hard it is to eat 3000 calories of healthy organic food? Think of it like this, take your typical breakfast, and then add 500 calories to it. Say you had 2 eggs and two strips of bacon for breakfast. Well take that and then add 3 avocados to that, and now you’ve hit your mark, FOR BREAKFAST. Over all It breaks down to needing to eat about 700 calories a meal, and 700 calories of snacks. Now, if I could go to mcdonalds I could get that easy in one meal. Or the Cheesecake Factory, my god, I could fill my quota for the week. Unfortunately it doesn’t work that way. Ground beef has become my best friend. Well that and cashews. Those little beauties add 180 calories for 20 cashews. I feel like I may soon turn into a cashew. Pretty nuts right?

 I do feel pretty strongly about committing myself to these research trials. They run alongside whatever clinical trial I’m in. To me, the benefits first and foremost are that I get seen at the clinic more. I get to come in and ask questions in person more frequently. That’s important. But also it’s important for me to give back and feel like I’m contributing a little piece to the understanding of this disease. Every little bit helps, just like every vote counts. Even if we do elect high baseline levels of neural inflammation. At least we cast our vote.