Tuesday, December 22, 2015
Do you want to hear the real truth about clinical trial visits from the parent's point of view? The good, the bad, and the ugly. We've just surpassed our first year in a life changing clinical trial. This is a coveted opportunity, one not afforded to everyone. As one not so compassionate doctor said to me, " well that's how the clinical trial ball rolls". So here we are a year later with one child in and one child out of the trial, both with the same awful disease, it's an indescribable feeling.
We need to really look back in a very humorous way because it is like having a hangover every month. Every monthly visit is like a hangover for the parent accompanying the child. Here's how it's similar:
1.) You have dry, cotton mouth
I remember one visit to the research floor. Nicholas had pulled up a table attached to a chair that wasn't properly supported, it's supports were not locked in place. I put my coffee on it, and it balanced there for about an hour. Then all of the sudden the table gave out and the huge cup splashed to the floor flooding the whole room with coffee. I remember having to leave the room, and both the nurse and housekeeping said "wow, you really flooded the room". That was it for me. That's all I had to drink that day. I felt like drinking it off the floor but knew I could contract some horrible hospital illness. All of the staff probably would have helped me if I asked to go get something to drink but I didn't. I'm not leaving Nicholas. So there I sat, and the next several days after I got home, I felt dehydrated, and the dry hospital air didn't help. I've gotten better about packing food for these visits, and surprise, surprise, actually eating healthy while there makes you feel a lot better but every visit is different. Sometimes I have nothing, and go home dehydrated.
2.) You have insomnia at least one night or more during the visit
You're worried about the procedure, or it's too hot or cold in your hotel room, or you sleep with the lights on in the hotel, or your sweaty son is cuddled right up to you. We have to sleep with the window open or Nicholas has terrible issues with breathing. This only works in some months but in many months I am shocked by how big the flies are that enter your room! Like the size of horses. I wouldn't recommend really that anyone sleep in the city with an open window without a screen. It's not good. You cannot sleep, and it's a cycle of no sleep then passing out the next night and on and on. The night of one of our clinical trial visits a nine year old boy was shot in an alley by a gang. I didn't sleep a wink that night as I watched the mother talk about loving and missing her son. It broke my heart and my brain as to how that could happen to a child which brings me to the next one.
3.) You learn a lot about the city you're "visiting". You feel like you live there too.
I am so thankful to be going to our second home. We saw the "We Believe" sign when the Cubs were vying for the World Series, and contrasting tragic shootings and gang activity. Both Cleveland and Chicago have suffered so much this year. I love talking to people at the park in Chicago. One Serbian nanny in the park, wanted to know so much about my kids and their disease. She talked about America and how many restrictions and rules we have and how she really liked it and it made her feel safe. It was such as interesting, and enlightening perspective. I meet people of all religions, and was fed homemade cookies in one of the waiting rooms by a nervous Jewish mother. It's a beautiful picture of life that really gives you a lot to think about and to appreciate. Where else can you see struggle, success, strife, and diverse views all in one place, it is truly beautiful, a beautiful culmination of society.
4.) You get sick, or if you're not you look sick.
You run yourself ragged, and put yourself second or third or forth, as a result you get sick. I shuffle around my neighborhood for several days when I come home without brushed hair, dry skin, a face with a cold, and sometimes I hardly get dressed in anything that resembles adult clothes. Neighbors ask me if I am OK but many can tell I am not. There is something about being in the hospital that just makes you tired, and just sucks the life out of you.
5.) Your kids might scold you or learn bad words.
Nicholas calls them "potty words". I had no idea that I was even saying anything bad. I couldn't find my wallet coming out of one of the parking garages, and apparently I said, "shit, where's my wallet". I whispered this by the way. So when we got home, Nicholas started testing us saying shit all the time. I would also like to tell you that when we were in Chicago the lines were being painted on Lake Shore Drive, so it was a free for all, cars driving wherever they thought the lines were. I got beeped at, and said something quietly, and from the backseat Nicholas shouted, " I told you to be careful! I told you to drive safely! You need to drive safe Mom!" Geesh, sorry. Often after we have been discharged, my sweet five year old says we do not need to eat, we need Legos! Often that is what happens, often he is in charge for a fleeting moment, because he's been through so much a small decision is a tiny sacrifice on my part.
6.) You fall in love with people.
The people in the hospital are everything. Nicholas is in love with the nurses, and so am I. All of the staff is amazing, and Nicholas says he misses them when we're home. He misses the bacon chef. His favorite nurse. We also make the nurses laugh a lot, and sometimes they're hurt by the swat of a small foam sword. The study staff and doctors are so much fun to get to know, and they're really good at their jobs so it's easy to fall in love. You have permanent beer goggles for all the people around you. We love them, and they love us.
7.) You learn what you're good at, but then you don't know what to do with it.
Nicholas was in recovery and up rolls two people with an xray machine. They hand me the lead vest to wear. I say loudly, " I have to put on my kryptonite vest Nick to protect me, like Superman. " "Alright lets put that flash light finger on (pulse ox machine), it gives you special powers to have your finger light up, let's get under the covers and light the way! The staff at the hospital says, " you are so creative. I am going to use those things you said, you are so neat and creative". It reminds me of my mentor who told me that every time he used to see a commercial on TV, he'd think Amy could create that...so what do I do with these creative talents? Not sure.
8.) You hide from people
Yes, that's me hiding behind the huge display of Christmas Ale by the check out. Yes, I am hiding from you even if our eyes locked. I like you but I can't talk to you, and I don't look well so that just exacerbates my shyness. It's not you, it's me and I'm sorry. I just can't. I am recovering from my trip. I have done this more times than I care to admit.
My husband has told me repeatedly to stop hiding from people I know in the grocery store, etc. He said it's weird. You know it's bad when an introvert tells you this feedback. I told him I don't know what to say to people, "Hi, my kids have a rare genetic disorder and oh look there's a sale on mayonnaise? " He said, yes just say hi. So I guess if you could help me with this and make me feel comfortable somehow that would be great. No pressure, something like, "Hi Amy, how are you? I almost didn't know it was you because you are normally so beautiful. Were you just in Chicago?..then I might just peek out from behind the Christmas Ale....that would be very helpful, thank you in advance.
9.) You think you look good and are kind of proud of the ensemble you put together. But you don't look good at all. My face is dry. I turn ten shades lighter in the hospital, and my clothes are totally de-shelved. I am a mess. I discovered Lush products on one trip to Chicago, and kept buying these little pods to apply some first aid to my face. Nicholas loves going in there, and buying giant blue planet looking bath bombs that splatter my tub with glitter for weeks afterward. However, he does note, " you are done Mom, you're not buying anymore. no more for you". What did I do? lol.
I am still debating about sharing a selfi I took with a Star Wars sand thing visiting the hospital. I am old looking, wrinkly, tired, and forcing out a smile. It's a nightmare but you can for sure see what I have been through.
10.) You've over indulged but not in alcohol. In stress, worry and fear but in the end the hangover feels the same. You're kind of disoriented. Wondering what happened during the whole trip, and wishing for the hangover to end and then it does.
If I don't laugh, I would be sad. So this is my comical view of what happens to me during the visits, and just think I am not even the patient. The only antidote for this hang over is refocusing my brain on things that matter; love, laughter, play and work...a cure would also be helpful, thank you in advance!