So I got my double-dose infusion of Remicade down at the University of Maryland in Baltimore on Friday. I left Philly around 9 for my appointment at noon and luckily didn't run into any traffic. Unfortunately to accomodate me in a hurry I got my infusion at the cancer center rather than my doctors office, which is where my frustrations boiled. I waited for two and half hours before they even started the damn thing. The upside, however, is that the cancer center is "state of the art" so there is a lot to entertain and keep you comfortable while you are sitting there. Each patient has their own section with recliners and a TV, which helps pass the time. After getting my pre-meds, I like to zone out and relax.
They also had a social worker from the hospital come by and talk to me. It was actually really nice because she was a younger woman and informed me about the various support groups at the hospital for cancer patients, people with Crohn's, ostomies, MS, etc. She was especially interested in connecting me with some younger people going through the same thing as me and I found it quite encouraging. I guess it was just nice to see that the hospital is concerned with helping people deal with the emotional aspect of chronic illness. I think our emotional health is overlooked too much by doctors even though it is a critical aspect of completely managing our health.
After my infusion, it was five-o'clock so I went out for some food and drinks with friends in Baltimore and didn't get back to Philly until 2 a.m. I really wasn't sure how I was going to feel so I was reluctant about making plans with anyone because even though I have an "excuse", I hate backing out of things last minute. Luckily I had been feeling good the past couple of days and I think I was riding an emotional-high just knowing that I finally got Remicade started again. One way or another, there is some kind of end in sight, whether it means I am healthy enough to be reconnected or I need to have another surgery.
And then Saturday came. And I felt great. Fantastic even. There were things different about my night of sleep on Friday that indicated to me that something was doing something. I can't even explain it. I told myself regardless of how I felt I would try to approach my day like I wasn't sick until there was reason to think differently. I just wanted to embrace a more positive attitude along with starting this treatment again.
And then today came. And I ate cucumbers and cherry tomatoes with my lunch. And as of five hours later, when I would normally be suffering the consequences of trying to put some variety in my diet, I was fine. Not an ounce of pain or lack of control despite the fact that I had eaten vegetables, and vegetables with seeds in them for that matter.
So I don't know. Is it the Remicade working? Who the hell knows. It certainly didn't work this fast the very first time I took it. But I also know that since my surgery in August, I haven't felt this kind of relief from anything, not even steroids. I was reluctant even to write anything about feeling well because until I have more days like this I will be waiting for something horrible to happen. But right now, in this moment, I know that I am going to wake up tomorrow and not worry about anything. I am just going to be me.
On my ride home from Baltimore late Friday night, I was wide awake. Even after being up for seventeen hours at that point, I was just happy. I can't describe how good it felt to be enjoying the moment with my friends rather than having the worry of my illness occupy my thoughts. And perhaps this is just a fluke. Only time will tell. But I also know the other side of illness, which will make you forget so damn fast about the pain you have felt. I can only hope to piece together one good day after another, until the pain of this part of my life is just a distant memory.
Happy Memorial Day.
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