It’s been a few weeks since my husband’s surgery, and we’ve been counting down to the beginning of this new round of radiation. In this last week before radiation begins, there haven’t been many appointments, and most of the paperwork has been completed, so it was hard to be crabby, and thereby, I hadn’t been posting as often.
But fear not, radiation has resumed, and there was a new sheaf of paperwork waiting for me, so now I’m back and just as crabby as before.
Actually, the past two-ish weeks were kind of fascinating in their lack of crabbiness. There were days that seemed almost like a staycation (except for the medication schedule, the feeding tube mishaps, and multiple visits to the pharmacy). But other than that, yes, almost like a staycation! Friends stopped by to visit for a while, shopping trips were made (since none of CrabbyCancerMan’s clothes fit him any more, as he’s lost so much weight), movies were watched, we played with our cat. I found a little time to take a class (pearl knotting, in fact, under the category of inexpensive, portable, and can be put down at a moment’s notice). We made it out to a birthday party for KittieGlitter, and enjoyed a cake made by SWMBO. CrabbyCancerMan wasn’t so crabby. He even cracked a few jokes. I almost felt like my old, chipper, cheerful self.
In that time of calm, there were lows as well as highs, of course. There was the irritation of the broken freezer, which while blood boiling at the time, was ultimately solved (yes, it had additional impact due to this cancer stuff, but all in all, in retrospect, small). There was some tough news from distant family. There were small medical hiccups, but nothing earth shattering.
However, throughout all of this – all of this relatively pleasant, all of this relatively calm – there was the tension of waiting. Not the happy anticipation that scientists say actually increases our happiness, but the stomach churning tension that goes from butterflies to moths to bats to vultures to Mothra.
Because one of the difficulties of this thing called cancer is that there is so much out there that we just don’t know. There are great academic books, resource websites, care center pamphlets and support groups, but ultimately, no one can tell the patient how it is going to feel, because the only person who can understand a feeling is the feeler itself (was that even English?). It’s that empirical problem of communication – ultimately, there are some sensations that we can do our best to describe, but no one will know, will really KNOW, what we mean. It’s too personal. It is the philosophical Qualia problem as applied to cancer.
While I feel that CrabbyCancerMan is in a great clinic, with wonderful doctors, skilled technicians, and empathetic staff, there are so many things we don’t know. Some of the expectations are formed from what pop-culture tells us about cancer (thank you prime-time television dramas and every sixth Lifetime movie). Some of the expectations are formed from what other patients tell us. There is a tour of the facilities, a general explanation of what happens. But then once you get home there are so many questions that come up and I don’t even know which search terms to put into google to find out “When does the patient get the tattoos?”
In a way, it’s kind of like the first day of kindergarten. You take your child on the tour – visit the bus stop, meet the teacher, find the desk, tour the school, play with the other children – but it is not the first day of school, and won’t feel the same as the first day of school, because you, the parent, are still there. Your child won’t know what school is like without you there until you leave. Similarly – you can take the tour of the facilities, sit down with the doctors, meet the technician, find your favorite pair of scrubs, look at the machine, but what does radiation actually feel like? You don’t know until you get there. And you can’t quite explain it to anyone else, because they won’t understand until they experience it. At least, this is what Crabby Cancer Man tells me.
And he’s even been through this before – he’s had radiation, so while he knows intellectually that he should know what to expect, it’s a different machine, a different style of radiation, so he doesn’t know what to expect. They keep telling him it is the same, but easier. Except that until he went through it, he didn’t know what “easier” actually meant. There is actually so much great information out there, that we couldn’t find a website that talks a patient through what exactly happens when one gets radiation.
And that’s part of the challenge of this whole process. I can be sympathetic. I can go to the appointments, sit in every appointment, but I will never know quite what it feels like to go through what he is going through, because I’m not him.
Today, that tension broke – the first day of radiation has passed.