Still Miles to Go

So I haven’t updated much because there’s really been very little change. I’m still stuck in a hospital room, unable to get the necessary nutrition through tube feeds, bored out of my mind. For the last week or so, I’ve heard that I’ll be going home “tomorrow.” I’m pretty sure that’s medical speak for “never,” but I’m still hopeful. The pancreatitis attack is over and my aspiration pneumonia has cleared. I feel fine and just want to go home. I suppose the positive is that we’re finally getting things in line so when I do go home, I won’t end up back here.

Over the weekend, we set in motion the plan to go home on TPN to supplement my tube feeds and what little I take in by mouth. We got m PICC line placed and the iv nurse doing it joked that they’d have to charge me less because I helped out a bit – even keeping sterile! The TPN was started last night and we’ll up the rate tonight in hopes that I’ll only have to be on the tube feeds 24/7 and I’ll be able to run the TPN solely at night. The team has been really great at listening to our input and asking us for ideas. It’s actually kinda surreal.

Although we had been operating under the assumption that I had mito for the last 18 months or so, it seems as if not everyone was operating under the same assumption. With the biopsy results, things have actually changed somewhat drastically. The doctors are no longer incredibly conservative with my care (waiting until things got really bad before treating). They treat aggressively in the hopes they can head off a decline. For this and my future stays (please let them be few and FAR between), I will be under the care of Team 5, the complex care team. Another change is the willingness to listen on the part of the omniscient physicians. When I ask for something or tell them that something is “off,” it’s immediately cared for.

As for me though, I still feel like I’m in this bizarre other world. I didn’t think my own view of myself, of my illness would change with the firm diagnosis. I had already mourned with the clinical diagnosis. I already knew what I was up against. But I guess there was a part of me – however small – that held on to the hope that it wasn’t mito. That it was curable. Or had a viable treatment. Or even had enough awareness that the ER docs wouldn’t look at me and say “mito-what?” each time I was in crisis. No offense, but I don’t want my healthcare providers to be getting medical advice from Wikipedia. But the biopsy did come back positive. And we are dealing with an ugly, progressive, degenerative disease. I can no longer hold out hope that it’s not mito. Instead, I’m forced to face it. And in facing it, I have a choice: I can choose to crumble and let it take what’s left of me; or, I can choose hope. Although I can no longer hope for a different diagnosis, I can hope for better treatments, increased awareness, more research studies, and eventually, a cure. I choose hope not because I can foresee these benefiting me in my lifetime, but because I cannot bear to choose to lose hope. I choose hope because I still envision a better tomorrow. And not quite the “tomorrow” that my physicians are so fond of, but the tomorrow that means I’m never going to stop fighting.

Once you choose hope, anything’s possible.
-Christopher Reeve