Well, today is Day 1. Yesterday I received my first infusion of a medicine called Remicade. It is the next step up the ladder for me in immunosuppression in the fight to control my Behçet's Disease. [Quick dictionary entry: BD is an autoimmune (AI) disease, kind of like a cousin to the Lupus and Crohn's family that never shows up at the family reunions. Far more rare than its cousins, BD can be difficult to treat because so little is known about it. Only 13,000 people in the US have it ... for comparison, the football stadium for my alma matter, Boise State University, fits 33,500 people. As with most AI diseases, my immune system can't tell friend from foe. Imagine an army on a hill facing an opposing army. While all the soldiers start firing on the opposition, my immune system is the lone gunman that turns and starts shooting at his own men. So my healthy cells get attacked for no reason, causing all kinds of problems. In order to fix this problem, my doctors take away the M-16 from the rogue soldier - in other words, they suppress my immune system until it can no longer effectually fight friend OR foe.]
My hubby and I are so far thrilled to be able to say that I received the infusion very well and have had NO negative side effects. I pretty much slept all day yesterday because of the Benadryl I had to take to minimize side effects - and also, I believe, just as a let-down from all my anxiety. But why was I so anxious?? We have read about Remicade since practically the onset of my BD in 2004, and have been seriously tossing around the idea of starting it for almost 2 years. Last summer was when we made the decision with my rheumatologist to formally apply for insurance approval to start it (again, one of the drawbacks of BD being so rare is that no med is FDA-approved for BD, so I have to ride the coattails of similar diseases for approval.) After several months waiting, we finally received the approval and I started the infusions yesterday. So I guess on one hand I've had plenty of time to get the jitters about this - but on the other hand, I've had plenty of time to turn my worries over to God! Hmmmf. I hate it when I'm confronted with my own hypocrisy.
I knew in the days ahead of the infusion that I had some anxiety going on. After all, who can hear the word "chemo" and not get a little freaked out? (Remicade is and isn't chemo. I don't understand a lot of the details, but I know it's now classified as chemo, but isn't a conventional, make-your-hair-fall-out chemo. From what I understand, all immunosuppressants are a form of chemo.) While I've been on meds before that are also classified as chemo (like CellCept, which nurses in the hospital give the pills to me by a spoon so I don't have to touch it - which was always weird to me. Why is it important for my skin not to touch something I'm putting in my blood stream??) - there's just something different about infusions. My first three infusions will be given at the hospital center of my doctor's office, but thankfully from then on I'll be able to receive them at the local cancer center, trading a two hour round-trip drive for 15 minutes.
What I didn't know until the morning of my infusion was just how nervous I really was. By the time we got in the car and were headed to my appointment (with my trusty best friend and husband at my side, as always), I felt sick to my stomach. I kept thinking, 'How will I be able to tell the nurse if the infusion is making me sick or if I'm just a scaredy-pants??' So while Danny drove, I laid my seat back and had some quiet time. I just prayed to God that I knew I'd gotten myself all worked up over nothing - that not only did worrying not help anything, but we all know what stress does to the body - but even more so, my worrying proved that I was not trusting God. Didn't He already know how the treatment would affect me? Didn't He already have everything in control, whether or not the new med worked for me? So why worry? No matter what my body did, I knew Who held my future.
But here's my question: would I be sitting here this morning, confident in my God and feeling all silly about my worry if I would not have reacted so well to the infusion? What if I was losing my cookies all morning? How often is our faith and thankfulness based on things going smoothly? OK, I guess what I'm really asking is, is my faith too often based on things going smoothly? It's sure cause for me to stop & think. My goal is to have the faith of Shadrach, Meshack, and Abednego. I read about them talking to the king who is about to throw them in a fiery furnace (heated 7 times hotter than normal!) because they refused to worship anything other than Jehovah. They told the king that they did not fear being thrown in the furnace because they knew Jehovah could save them - but even if He didn't, they would praise Him anyway!! Do I have that faith?? No. But I pray I'm on my way.
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