While I was showering today I started thinking about the things that I really miss from when I was first sick nearly a year ago.

• I miss the excitement–going in for surgery, staying in ICU, managing pain med cocktails, learning to walk, having visitors…it was all so exciting early on. At the time there was little expectation that I would be diagnosed with terminal cancer (at least little expectation within my own mind!) so all these things were fun and interesting. They were all experiences that I, as someone who had never stayed in a hospital before, found interesting and exciting. (kind of weird, I know) Now, these days, everything is routine. The only exciting medical stuff is when we get MRI results back, when we get to wait and see how sick I get from my chemo meds, or when we get to see how constipated I get as I up my vicodin. It’s just not the same.*
• I miss the Jello–Seriously, while hospital food isn’t the best, there was something fun about being waited on for every single meal. Not to mention that it wasn’t until the last four days of my stay in the hospital that I learned that I could literally choose and request anything I wanted for a meal! Literally, if they could make it I could order it. From milk shakes to blue cheese burgers I could order it…if only I had found this out on day one! Even better than the hospital food was the killer treats that you wonderful friends and family brought in to me. From thai food to a Wendy’s frosty it was great to eat so well. The thing is, is that I can (and often do) eat that well today…but it’s not the same. There’s something less exciting about it. Again, it’s just all so routine now.
• I miss the simplicity–Everything was simple early on. I had one job: recover. Everything revolved around that. Even Jess’ jobs were simplified in many ways, though she definitely had more than one. Today one of the hardest things is figuring out how to function. How much do I work? How much time do I spend with friends? Following ten days of being sick who deserves my time most? I’ve been at home for those ten days, but by no means has it been quality time with my wife and kids. So do I follow up those ten days with a series of quality days? Do I catch up on my lost time outside the house? What about my “responsibilities”? Which responsibilities still apply when you may or may not be dying of cancer? I could/should write a huge blog about this one bullet point. I miss the simplicity ’cause right now I’ve got little to no idea how to manage my time, my energy, and my activity.
• I miss the pain meds–It’s not so much that I don’t have access to pain medication right now, rather there was just something nice about having someone else in charge of it. It’s such a hassle trying to remember all my medicines, vitamins, supplements, etc. I liked when nice caring people would come in the room at the right times to give me the right stuff and to occasionally talk me into taking more or less of different things. It was nice. It was easy.
• I miss the reading–It kills me that today I have lots of time to read but generally lack the mind-clarity to be able to do it. Due to “chemo brain” (as my doctor calls it) very often when I try to read one of the books in my long queue I just can’t focus nor can digest what I’m reading. It’s frustrating. When I was in the hospital (after the first couple of days) and when I first came home my brain was not the problem as much as my body was so I was able to read more…I miss that.
• I miss the bed–Come on, who doesn’t want a bed that sits up?! The rails were nice too ’cause they keep my stuff (books and laptop) from falling off. Oh, and don’t even get me started on its ability to go up and down. For a dude that can barely get to his feet to put on his socks it’s nice to have an adjustable bed! The only thing I do not miss about those beds is that the mattress would constantly move in order to ‘protect’ me from bed sores and such. No, I do not miss that part.
• I miss the visitors–For a social dude like myself it was pretty flippin’ awesome to have people visit every day. Don’t get me wrong, with where life has taken us and with how tired we are there’s not a chance we could emotionally and practically handle visitors like that today. But still, I miss that back then it was not only a reality but a semi-manageable one!
• I miss the lightness–Let me say upfront that I should have been more worried and less lighthearted early on. But even still, I miss the fact that back then I could get excited about small things like learning to pee again or transitioning from a walker to a crutch. Those small hurdles were worthy of being celebrated…but today there’s few things like that to celebrate. Life is just life. And even more so with the development of my cancer everything is seen from a different perspective…a much more sober perspective.

There are definitely things that I don’t miss. When I was in the hospital I didn’t get to see my children enough. I don’t miss having a catheter. I don’t miss smelling (I didn’t get to shower as much as I should!). I don’t miss having a bag of my own urine strapped to my leg. I don’t miss the blood thinning shots. I don’t miss having my blood drawn every morning at 4:30. I don’t miss being prodded in random awkward places. There are many things I don’t miss and given the chance I wouldn’t go back. But being honest, being completely honest, the bullet points above are things that I’ve probably romanticized…and I’ve probably romanticized about them because real life is just so hard. Hospital life isn’t real life. It’s not. It’s an alternative world that costs lots of money to create. Real life is gritty, real life causes immense clashes of balancing worlds, real life requires more of you, real life invites harder choices, real life is just more difficult.

Real life is also more rewarding and its worth it and I wouldn’t trade it for anything…

*  Jess would like to clarify that SHE would never use the word “excitement” with regard to her husband going in for back surgery and tumor removal. Maybe I should clarify that I use the word “excitement” quite loosely!