Apparently, We Need Some Time Apart

My new gastro as well as my new surgeon ordered me to stop Remicade to allow time for the Remicade levels to decrease in my body before surgery. The reason for stopping it is because Remicade weakens my immune system and the doctors said it would slow down the healing process.  I was supposed to have my next Remicade infusion on October 31, 2017.  Even though I won't likely experience a literal withdraw from missing my regularly scheduled dose, I'm freaking out a little.  They have taken away the one thing that helped me have pain free days, formed stool, control of my bottom end pipes, and regular bowel movements. Imagine my concern over the fact that I will not be getting my medicine and my stomach and bowel movements have not gotten back to how they were before my colonoscopy last week. The drug was designed to intentionally weaken my immune system because my immune system is fucked up when left alone. Without Remicade, I'm worried my immune system will fuck up the current state of my health before surgery.

No matter how poorly surgery goes or how many complications I experience due to surgery, I don't think I will regret the decision to have surgery.  How could I allow myself to regret the only solution that was presented to me by multiple doctors? The choice I may regret would be the decision to stop Remicade at my new doctors' request. I could make one phone call tomorrow and go back to my old gastro. His nurse would give me Remicade in heartbeat.  I would like to maintain my current health for four more weeks, which would just about get me to surgery day. I would also like my body not to build antibodies towards Remicade while I'm off the medication.

Remicade, it's not you, it's my doctors. You gave me better health than I experienced in over a decade. Apparently, we need some time apart though. Thank you for the amazing days you gave me! I really hope you'll wait for me until after surgery because I don't want to say goodbye forever. I just have to say goodbye right now.

Remicade

I had my first Remicade infusion on Tuesday, May 3rd, 2016.  My mom drove me to my infusion appointment because she didn't believe I would be well enough to drive afterwards. It was nice to have a chauffeur for the day, but I would have been okay to drive myself. After I signed in at the front desk, I took a seat in the waiting room. It's no surprise that I was the youngest one in the waiting room by at least thirty or forty years. Sally, my nurse, called me back. Sally is the same nurse that helped me figure out insurance and the Remistart program. She asked me a few questions and began searching for a vein to insert the IV. When she found a vein on the first try, I confessed my love to her. Next, she began preparing Remicade to inject into my saline bag. The Remicade dose is based off of how much I weigh. Once I was all hooked up, Sally walked me into her spacious office that has three comfy reclining chairs facing her desk. Two of the three chairs were occupied by other patients getting infusions, so I took the empty one.  Sally offered me water and coffee before sitting at her desk. Throughout the infusion, the other patients didn't talk, so I put on my Beat headphones, closed my eyes, and listened to music. Soon, the patients were done with their infusions and I was the only patient left. Intermittently, Sally got up to check the flow of the infusion. It was rather boring. The IV was a little uncomfortable and I felt a slight burning sensation while the medicine went into my vein. Cimzia also gave a burning sensation while being injected, so I didn't think much of it. It didn't take near as long as expected. My appointment was at 10am and I was done by 11:50am. I think I had a headache before I got the infusion, but after the infusion I had a really bad headache. Overall, it was no big deal...it's just my new normal.

My co-worker's mom used to get headaches and nausea from the Remicade and her nurse started putting something into the saline bag to prevent those side effects. I plan on talking with my nurse if I experience a bad headache again after my infusion on May 17th.

Humor, Medicine, Running, and SeaWorld

When I entered the family room, I nodded my head and raised my hand with anticipation of praise as I announced, "Thank you, thank you! I trimmed my own toenails." My dad smiled wide with pride and told me to get a sticker for my sticker book. Being an adult is hard.

In regards to my health, I don't feel qualified to make treatment decisions. The doctor tells me a list of options and then tells me to choose. In the moment, I may think I made a solid decision. However, after pondering my selection, I wonder what the hell I'm doing?  When did a biological medicine being infused into my vein become the best choice?  According to my nurse advocate, my insurance approved Remicade, but my co-pay is really high (she didn't tell me the amount of the co-pay). She will be mailing me paperwork for Remistart, which is a patient rebate program to help with co-pays. Eligible patients only pay $5.00 per infusion. I went ahead and scheduled my loading doses for May 3rd, May 17th, and June 14th. After the loading doses, infusions will be scheduled every eight weeks. The bad news is that the infusions take two and half to three hours and my nurse advocate only administers infusions Tuesday mornings or Friday mornings at her office in Ocoee, which is nowhere close to Sanford where I work. That means more time I have to "waste" taking off of work for my health.  I'm going to be lucky if I have enough time off left in November for the NYC marathon. Anyways, when I made the appointments, I didn't know where Ocoee was located. I'm going to call her tomorrow to see if I can request a location closer to Sanford. Either way, I'm going to have to talk to my supervisor to let her know I'll be needing more time off.  Hopefully, she'll still be understanding. If I do keep my Remicade infusion appointment on May 3rd, I will not have to do any more Cimzia injections.

My colorectal specialist told me to take two weeks to recover from what ended up not being as serious as we thought going into it. Technically, I should probably wait until my follow up appointment on the 29th or call her office to get approval to start exercising again. But you know me, I do what I want. I walked two miles on Monday to prove to concerned family members I really am ready to get moving again. On Tuesday, I ran one mile with my sister, Kelly, and then we walked another two miles. It felt good. I'm a little sore, but I'm excited to start training again.

My company is hosting a picnic for Employee Appreciation at SeaWorld this Saturday. I was allowed to RSVP for myself and one guest, so Taylor is coming into town to be my guest. After the picnic at Sea Harbor Pavilion, my company paid for everyone's ticket into the park. Bonus: For only $20 I can update the ticket to a fun card for the rest of the year! They've already distributed the free parking ticket. I'm excited because I haven't been to SeaWorld in forever!