My maintenance infusion to treat my Crohn’s Disease landed in the middle of Hell Week. Remicade (Infliximab) is the name of the drug. It’s pretty hard core stuff: a low grade type of chemotherapy that’s no longer used to treat Cancer, but works wonders for autoimmune diseases such as Crohn’s. I’m on a “slow drip” to prevent an allergic reaction, so the entire appointment takes about 3.5 hours. “Fun Bag” is my pet name for the intravenous bag that contains my Remicade. The nurses get a good laugh anytime I bust “Fun Bag” out of my vernacular arsenal. I’ve been getting this infusion every 4-to-6 weeks for the last 6 years now. Because there is no cure for Crohn’s, I’m projected to receive these infusions for the remainder of my life. I receive my Remicade in the same Infusion Center where Cancer patients get their chemo. It’s the same Infusion Center I used to take my Mom to when she was receiving chemo. I’ve always felt a sense of guilt that I’m sharing this space with people who could potentially die of their disease. Cancer is a killer. Crohn’s itself will not kill me, but complications from Crohn’s can kill if it goes untreated. In all of the years I have been coming to this Infusion Center, I rarely see repeat patients coming through (not on my schedule, anyway). No long-term Frequent Flyers like me. I like to think this means a good share of the Cancer patients coming through here defeat the beast and get to ring that bell. Crohn’s patients never get a chance to ring that bell. The Infusion Room is our purgatory. Today’s infusion is different, though. It’s my first infusion since my Cancer diagnosis. The irony is not lost on me, that I may soon be joining the ranks of the Cancer patients in here (assuming I’ll need chemo). Will the nurses be able to keep my infusions straight? Will I have to clarify what I’m coming in for: Crohn’s or Cancer? Maybe I’ll wear a different name tag for each appointment, so they know which RX to give me: “Hi, my name is Crohn’s.” and “Hi, my name is Cancer.” At least I get a cool combo-name out of the deal: “Crancer”.
The nurse finally calls me back, one of the regulars. All of the infusion nurses are great. Most have been on board the entire time I’ve been coming in for my Crohn’s. We all know each other life stories for the most part. We keep each other updated on our families and our adventures. As the nurse was prepping me for my IV, I asked her whether the records accessible to them show my new diagnosis. She checked: no record on their files. So, I give her the update. I figured, maybe they can give me some insight as to what to expect from their end of things. At this point, I know nothing other than my diagnosis, so I’m still feeling a bit lost at sea. As soon as I said the words “Invasive Ductal Carcinoma”, she told me she had the exact same cancer in her right breast (mine is in the right breast, as well). She told me how she had a double mastectomy followed my a few rounds on chemo, and she’s been cancer free for the past 5 years. Oh, this is what I needed: the real-life experience of someone who’s been exactly where I’m at! I felt so much better after talking to her. She was the right nurse at the right time, indeed!
Entrance to the Infusion Center (Red Wing Mayo).
Sour Tits 