Part 2 —
My friends and I were tucked safely in our beds by 12:30 or so on Wednesday night with alarms set for 8a Thursday morning.
My eyes popped open at 6:30 Thursday morning. After a late night, I was up at 6:30. I guess the anxiety got to me. I have been nervous about this day for a couple of weeks. This is the test to see if this Nexvax stuff is working and maybe if I got the medicine. This is where the rubber meets the road. This is it. I have a lot of hopes, money, and dreams tied into this. It doesn’t dominate my life, but it is certainly on my mind a lot.
Caroline got up to go to the bathroom and we stayed up talking. I know she was doing most of the talking. She doesn’t know this but it helped keep me calm. Eventually, I got out of bed, got dressed, and we drove to the testing center.
My friends, Caroline and Lora, had a big day planned. They were going on a booze and food tour of Nasvhille while I was doing my food challenge. I was a little jealous and after hearing about their awesome tour, I’m even more jealous.
Anyway, I arrive. I have the standard chat with Nurse Ratchet about maintaining my gluten free diet, blood pressure, weight, and temperature are all taken. She confirms I’m fasting. She also confirms I injected yesterday and I did. Then, the big box arrives. The big box has the materials for all food challenges specifically designated for me. Seals get broken and there are three sealed boxes inside the big box – one for each food challenge.
We open the individual food challenge box and there are several things in the box – a really nice shaker bottle, a packet of watermelon flavoring, and the dreaded packet of placebo or gluten. I look at the white powder in the testing packet. If the packet contains gluten, it contains 11g of gluten or the equivalent of two slices of bread. If it is placebo – well, who cares, right? I mean if you are going to give me placebo I really don’t care what it is, I just know it isn’t my kryptonite.
Nurse Ratchet reads the instructions, mixes my stuff, and the 5 minute timer starts. I have to drink all of the contents in 5 minutes. The whole time the instructions are read and the mixing is happening, my anxiety starts to get the best of me. At the beginning of the study, there was a gluten challenge. I could mentally prepare for that. I wasn’t fully prepared for my reaction, but I knew I would be sick. With this, I have no idea if I will be sick or if I will be okay. That is the worst part – the not knowing.
So, I drink the drink. I do it in under 3 minutes. The drink is vile. The watermelon flavor is SUPER sweet. I am not allowed to dilute the drink further or drink anything else until the test drink is complete. Ugh!
Drink is in. Now we wait. This is also not fun. I know that when I did the gluten challenge it took about 2 hours before the vomiting began. So, if I can get to the 2.5 hour mark, I might be okay.
Two hours approaches and my cheeks start to flush and I get a little rash on my chest. Now, you guys know, I’ve been getting similar reactions for the past several weeks. Earlier in the study it was worse, but now it is very short lived and manageable. (My mom thinks the flushing is menopause, I think not!) I start burping A LOT. For me, burping is a sign that I might vomit. I start to get really tired like I want to go to sleep. Stomach cramps start. I start to worry. Is this gluten? Have I been getting placebo?
But I don’t get sick. Nothing happens. By about two hours and thirty minutes, all has stopped. Flushing is gone. The rash on my chest is gone. The burping is gone. Fatigue clears. All of it. Gone. It’s like walking away from something terrible realizing that you are safe now. That’s what this is like.
I have to stay until 4 hours post drink and then they are planning to take another blood sample. I also have to meet the doctor. But, I lived and heck, almost thrived through this one.
Then the questions start again – Was this placebo? If it was placebo, then I have 2 more challenges where one or both could be gluten? If one or both are gluten, ugh, I’ve got a lot longer to go. If it wasn’t placebo, does that mean the medicine is working? Am I getting placebo as the medicine? What if this food challenge was placebo and I’m getting placebo, how sick am I going to be the next time?
As you can see, I really started spinning. This can mess with my mind if I’m not careful. But I signed up for this trial. I can’t let it get me down. I can’t let these doubts stop me from taking the next steps. It just messes with my mind a bit. I have to bury that and keep moving forward.
The bottom line is that today I’m fine. No side effects. I’m a little tired, but it might have been because I didn’t get enough sleep Wednesday night.
Two more weeks and a trip to California until the next food challenge.
To the Nexvax team that reads these posts, thanks for reading! I know you are out there!! 😉