Lying in bed the night of March 29th, I was having trouble focusing on the morning. Focusing on that “12 hours later” period where I knew I would feel somewhat back to normal, and I could finally breathe without getting a throbbing pain in my chest, or walk without my legs giving way from under me. As I continue this treatment process, I have learned what methods work for me, what methods don’t work for me, and how my body will react to different medicines and scenarios. I have learned that the pain is temporary. I am confident in knowing that just as the Lord commands the sun to rise each morning, he has equipped my body with the strength and endurance to continue fighting this disease.
This past Thursday (Round 3 Day 8), I headed to Houston to finish off Round 3, see Dr. Dreyer’s smiling face, and face a new challenge. On the 8th day of each round, I receive two different infusions that both have pretty immediate side effects. One is Vincristine, which I also receive on the first day of each round. Vincristine effects my joints and causes a good amount of muscular pain. In the beginning of this process, Vincristine only caused me to experience some bad pains in my jaw, but this past time, I started having some bad leg pains and couldn’t walk around at a normal speed, let along stand up for very long at all. The other drug I get on my 8th day is called Bleomycin. Bleo and I, man…we had some struggles. Normally, Bleo is a “fast reaction” drug, meaning if you are going to react to it, your reaction will occur within about 2-4 hours of your infusion time. The first couple times I received Bleo I did not have any awful reactions, but this past Thursday, I began to understand what it means to feel the wrath of Bleomycin. About 2 hours in, I began to have an awful headache and slowly developed a throbbing pain in my chest. I was already experiencing some chest pains from earlier in the day because my Port Access didn’t go very well, but regardless…this new pain was unlike any pain I had ever felt in my life. Bleomycin is supposed to cause a spike in fever and trouble breathing. I have decided that the reason my chest hurt so bad for that 8 hour period was because the drug was attempting to attack my lungs, causing them to stop working, and my lungs simply responded by saying “Oh heck no. We’re not gonna stop that inhale, exhale process. Bleomycin’s got nothing on us.” So my wonderful, beautiful lungs continued to work hard, harder than they should have to, which made my chest throb uncontrollably to the rhythm of my heart beat.
I told someone last week that in those moments when I know my body is “under attack”, I wish I could individually talk to my organs and tell them “good job”. Tell them to keep fighting, and maybe even give them a high five or a hug, as if they were a person. Talking to my organs makes me think of the Disney movie “Inside Out”, where each emotion inside the little girl has a personality and a voice. Ironically, the little girl in that movie is named Riley. Yes, spelled differently than how I spell my name, but still pretty cool. I remember when that movie first came out, my mom and I thought it was so weird to hear my name said out loud on a popular Disney film because the name “Rylie” (however you spell it), just wasn’t that popular. Maybe the little girl was given the same name as me so that I would have the ability to imagine myself communicating with my organs as they lead the fight in this battle. It’s silly to think about stuff like that, but I can’t help but be thankful for something as small as the name of a character in a movie.
We’re normally too busy going about our business to stop and think about how amazing the human body is. How strong we are, and how beautifully we are crafted together to form something incredible. With that being said, I’d like to send a little message to the organs that continue to amaze me every day. Hugs to my Heart. Smiles to my Lungs. High five to my Legs (or just all of my muscular strength in general). Hang in there Stomach. And though this is not an organ, keep shining head. Bald is fun.
From the inside out and the outside in, Rylie Elizabeth