I flew back home from the NIH today. I find out if I meet protocol to make it into the Allakos clinical trial for Hyper Eosinophilic Syndrome hopefully by Friday or early next week.
Caroline and Coby picked me up from the airport. They brought me flowers! Then we got pastries in Long Beach and watched the sun set.
The nurse in charge of the protocol called me while on the way back home and told me that if I made it into the trial that I would start infusions of either medicine or placebo next week. In which case I would have to fly back again from NY to Maryland for my first one.
Each infusion takes 5 hours but the patient needs to stay there for 3 days each time.
Yesterday I had an endoscopy to see if I qualify. It was a longer one than Iβve ever had and they took a ton of biopsies. I felt sore after, especially in my lower abdomen where they took the most. I slept it off and woke up feeling much better. I still feel some soreness from where I had the biopsies taken.
The doctors say that there was some inflammation mostly in the lower GI and less than I used to have in the upper GI thanks to prednisone but I guess weβll see if that inflammation contained the amount of eosinophils that they needed. They had previously lowered my meds to make me more symptomatic to qualify but Iβm not sure if it was enough time to have enough infiltration.
Weβll see.
Iβm trying to be hopeful but realistic about the possibility of not qualifying for a trial yet again.
Itβs not very easy to travel alone feeling like this but itβs also necessary so that I can get better medication. I keep telling myself this. Itβs necessary.
Thereβs also a certain sense of loneliness and isolation when youβre sick and even more so when youβre a lab rat traveling back and forth for clinical trials.
Iβm trying my hardest to balance this and my job.
Sometimes itβs hard to not fall apart.
I think I subconsciously keep myself busy as a means of having no time to dwell and no time to fall apart.
Itβs a lot of pushing through.
Thereβs a lot of tape holding the pieces together.
