The last few infusions have rewarded me with giant headaches almost immediately after the drip starts, so I have started to come prepared with Ibuprofen and bottled water. Thanks to my mother-in-law who came with me last time, I realized that actually eating something during the infusion helps, too. Seems like a common sense thing, but I never thought to bring much more than crackers.
Yesterday, because my infusion time was earlier and the clinic is an hour and a half away, I decided to leave with plenty of time to spare. When I neared the clinic, I realized I had an over-abundance of time, so I looped around to wait in line for Starbucks. Starbucks is actually my least favorite coffee place; it feels uppity and disingenuous to me, but I love their sandwiches and I only wanted a small coffee anyway.
I guess even they figured it would look the same this time around because they didn’t do an exam. Instead, they told me how they want me to take pills on a more regular basis. Codeine. A Tylenol-Codeine hybrid, but codeine all the same. I have avoided taking addicting pain pills on a long-term basis for practically my entire diagnosed life. It might seem insane, but I am frustrated and legitimately worried about starting these pills.
The doctor or PA usually make their rounds right away while the nurses schedule the next treatment, verify the med list, take vitals, and then close the curtain and let me be. This is usually when I become inundated with emotion. I try to sleep the experience away but with the burning IV site, pounding headache, worn down body, and overwhelmed brain, I usually cannot sleep. Not until I get home anyway. I always seem to power through the IV flush, hit a second wind for the travel home, and then crash like a crazed new parent minutes after getting back. The headache usually persists until the next day, sometimes even the day after that.
The worst part about infusion day and the day after is the absolute lack of energy I have. Between the headaches and the fatigue I have a hard time wanting to leave my room. Jon and my brother do a good job holding down the fort so that I can try and relax. Naturally the guilt-ridden anxiety overwhelms me and I try to take on more than I should. Sometimes it’s just a donut run with the boys or a load of laundry…but it takes it’s toll all the same.
Despite all of that, I am grateful. Amidst the darkness and 900 MG Remicade-induced despair, I see hope.
After years of hemming and hawing, I finally sat down and wrote a letter to my surgeon. I am sealing the envelope tonight and mailing it off tomorrow! I don’t know if he will respond or if he will even see it, but it is a thank you that needed to be said.
Dear Dr. Ahmad:
You might not remember me, but I was a patient of yours in 2010-2011. I was referred to you after months of battling a flair like I had never experienced before. I was a 20-year-old kid who felt alone and lost in this giant world, without so much as a road map to guide me.
I remember our first visit in waves; never in full focus or with much clarity. You wanted to perform surgery and give me a temporary ostomy. I was scared–but not of dying–at least I don’t think. I was scared of what happened if I survived. I know that probably sounds crazy, but it’s as close to the truth as I can surmise.
To this day I don’t know what compelled you, but you offered your surgery pro-bono. You saved my life. I’ll be honest though, I hated every minute of that bag. I remember feeling powerless. I remember the bag leaks and the shame l felt, like it was yesterday. You were true to your word though, and it was temporary. So temporary in fact, that I never truly got to appreciate what that first surgery meant. I was so focused on what I had lost, what was taken from me, that I never stopped to think about what I had gained: faith. Faith not in God but in science and in humanity.
I have spent the last six years trying to write this letter to you. I think I have never felt worthy, like the things I have accomplished were not enough to make you proud or happy that you went through all the effort. I might not ever be the model patient, or save the world, but for the first time in my life I am proud of me and I have you to thank for that. I have you to thank for everything. They say a picture is worth a thousand words, so I have included some pictures of the things that I am proud of. Things I was only able to do and achieve because of you.
After surgery, I re-connected with a boy I knew in second grade. A boy I fell in love with and married. That deep-in-your-soul, shout-it-from-the-roof-top, write-a-sonnet love, that I thought only existed in fairytales and Hollywood. After being told I would never have kids, I had two. Two crazy, full-of-energy, wily, smart, and handsome little boys. I went to college, graduated with an Associate’s before deciding to go back for a Bachelor’s. I even bought a house and started a career. I have lived and continue to live well. The hard times are surrounded by the good times, and I know I owe my success and family to you.
So thank you, truly.