The last 48 hours have been significantly less pleasant. Felt fine Saturday but woke up early Sunday morning with the chills, and then woke again slightly later with a solid temperature. The protocol for a temperature over 100 for me is to immediately start an antibiotic, which we chased with Tylenol. That got the temperature under control but I felt like ass the rest of the day.
We were supposed to go to a family BBQ on Sunday but I couldn’t make it and my wife, who had contacted Dr. F., wouldn’t leave me at home. Instead her parents brought the BBQ to us, just another example of how amazing her parents are. Warmed my heart to see Ariana get to play with her grandparents, who are amazing with her. Another example of how I feel guilty about this, though. I know that’s wrong, and that people are happy to accommodate, but I can’t help feeling it wouldn’t be necessary if I didn’t have this. Not sure how to shake that feeling.
Passed out in a comatose state last night at 7:30 pm and then alternated between the sweats and the chills for the rest of the night. We called Dr. F. again who told us to come down to the Rose ER to get checked out. He didn’t seem concerned but was surprised I was having such a severe reaction so we all figured it would be best to rule things out. Having spent the last week ruminating on the side effects of the drugs I’m now on (like, scary psychotic “whoa, that would suck” side effects like your jaw dying — which I didn’t even know was a possibility!), your mind tends to wander. Is this how it ends? Is that what the start of organ failure feels like? That’s a fun one.
Called a friend to babysit and we hit the ER, where after 5 hours and having a ton of blood taken we were released with a reassuring “there’s nothing wrong with you.” My temperature seems to be stabilized for now although I do have a slight chill, so fingers crossed for tonight. Better safe that sorry, and I guess they are used to this down there.
The overwhelming thought for me for the past day or so of feeling like this has been “ahh, THIS is what it feels like to be a cancer patient.” It’s been a really black period — I was fading in and out of lucidity this morning, plagued with visions of my own funeral, thoughts of how if this is what things are going to be like from now on I don’t want to live like this, images of Ariana asking “where’s daddy,” etc. Just dark, unpleasant, rapid-fire. As the images came back to me throughout the day it was hard to remain composed, especially while laying in the hospital. Having to tell so many people at the ER why I was there, how I just started chemotherapy the previous Friday … too much.
It’s funny, almost, how the protective walls cave in … I’m laying there in a hospital bed, desperately trying not to think, not to feel, to count the divots in the ceiling tile in desperate search for some OCD train of thought to lead me away from my real thoughts. I can feel it when the emotional levy breaks, when a tide led by a thought of Ariana fatherless or something else blasts through like it wasn’t there and completely engulfs me.
After they drew all of that blood at the ER they wheeled in an elderly woman to the slot next to me who had some sort of bronchitis thing going on. That sent me into a little bit of a panic, but we quietly asked a nurse if I could have a mask and when we told her why (suppressed immune system, hi) she put me in a private room. Granted after just one session my immune system isn’t as compromised as it will be getting, but still I have to be careful.
I have a bunch of friends who work or worked in the medical field who have always expressed the positive side of working there, the helping side. It’s hard, mostly experiencing hospitals when my daughter had surgeries or now with me having to visit them as a cancer patient, to see that — I just see the hardships, the horrific stories … and now I’m living my own, I’m “that” person I never wanted to be and that I felt overwhelming empathy for. It’s hard, especially in the grips of severe body pain, inability to control my temperature and worse fatigue than I’ve ever felt before, to not feel like the “see, it could always be worse” example.
Part of that is pity party, I know — I’m pretty aware of how much worse it can be. Forgive me a momentary lapse of humility, though.
When we got home, Amy took Ariana shopping briefly and I had some time to reflect. I decided to get the hell out of bed and just move, be, breathe. I think it helped, somewhat. We took a walk tonight with Ariana before her dinner and that helped too, just to get outside and pretend to be normal again, just a couple walking their baby in the stroller, daddy stopping for a moment to blow a dandelion in her face. I asked Amy if we could try to make more plans with people because I feel like I’m living in a bubble right now, detached from everything except emotional stimulus that seems to take great joy in overwhelming me during weak moments.
When we were driving home today from Rose I noticed a sign for some random church with one of those faith messages on it … something like “Feel his glory” or similar.
I wish I could feel it. I really do. I just don’t see any glory in this situation, I didn’t need a reminder this big to be a better father, husband and/or friend, and glory isn’t what keeps popping into my head as the end of this journey. I can spin this however I want, be as positive as I want (and I’m trying), but I’m not sure how to effectively spin the fact that unless the omnipresent (and so far infective) “they” cure this fucking thing I’m a walking dead man and we’re debating when, not if.
Try wearing those boots for a day.