Last week was Andrea’s first chemo round (1 of 6), and she’ll blog about the details when she’s ready. In the meantime, I’m dealing with my own reaction to the treatment.
Leading up to it, I didn’t know what to expect. As I mentioned previously, I was looking for a metaphor, and Battle Buddy seemed good. Sort of. But as she started, it wasn’t really fitting. It’s one of those weird things that for some, fighting cancer is all aggression. Beat it, stomp it, kick its ass. Take it on and kill it. And for that kind of fight, maybe Battle Buddy would work. But it isn’t how Andrea sees it. She isn’t seeing it in terms of a war. She’s taking treatment and healing. So something more managed, a process perhaps. Or maybe embracing life for inner peace at some stage. But not with a whole of universe / life and energy / zen approach either. She’s not embracing crocs and tie-dyes, and making edibles. At least I don’t think she will be.
But for me? It’s like it’s both an invisible disease AND an invisible treatment. She had treatment on day 1 of 28, two drugs by IV. As I said, she’ll talk about the experience herself, but for me, it was…well…anti-climactic. Certainly nothing resembling a battle. As I noted, it’s more like “Let’s get that stuff slowly dripping into you!”. It’s about as eventful as dialysis, which no one would see as some giant battle. The drugs are harsh, but while they were going in, I didn’t really see much happening. She had a reaction, and that was obvious, but the main part of the reaction was itchiness and some hives.
From the outside looking in, I can’t see how itchy it is. I can’t see if something is hurting. She had pains and aches in the days afterward, but she’s not debilitated by the treatment. No nausea, no hair loss, no crippling weakness that confines her to beds for weeks, no nurse coming by to check on her. She’s had issues in the last 7 days, I’m not minimizing them in any way, I’m just saying from the outside, I can’t judge them. I don’t SEE anything. It’s weird.
From the beginning, I have seen nothing. I can’t tell she’s sick except to the extent she tells me how something feels. Outwardly, it’s invisible. I can neither see signs of the disease nor see what the treatment does. There’s no surgery, no scar, no recovery as she moves, like after her C-section or appendectomy.
It feels weird. She is the “sickest” she has ever been in her life, and I have no idea what’s going on unless she tells me. Which makes it hard to know what to do to help her. I can’t really anticipate anything.
Way back when she was pregnant and put on bedrest, I freaked out when I came home one night and found out that she had got off the couch and thrown a frozen pizza on our pizza stone, opened the oven and put it in, bent and lifted and moved around the kitchen. It seemed like a ridiculous risk to take, and as much as I want to respect my wife’s right to choose in any situation, that’s not the same as respecting the actual choice. And I know there’s a risk in any serious illness of treating the person like an invalid, assuming debilitation that is greater than the reality.
So I wonder…if she doesn’t eat anything, should I be coaxing her to? If she wants to make dinner, should I be throwing myself in front of her and saying no? Do I tell her I won’t let her do her own laundry (normally I do it), take out the garbage (shared), make a sandwich (normally we do our own), assemble dinner, or actually cook dinner?
The correct answer is, as it always would be, whatever works for us together, to talk and decide. Yet I also know that she’ll push herself to do stuff that she normally does, not out of desire but a sense of obligation, without worrying if she’s up to it, and I’ll worry but avoid stopping her as I neither want to argue with her about it nor make her feel like an invalid who has to give up independence.
Back last winter, when I was dealing with my leg wound, I felt like a wuss. It was driving me into depression, and ignoring infection or the pain, it was originally just a scratch. I felt like I was doing the man-cold thing. Yet it was knocking me on my ass mentally, emotionally, etc. When I eventually had the experience where I looked like I was flayed, it felt like “At last I have proof, this isn’t just me over-reacting!”.
I don’t have that with Andrea’s experience either. Her discomfort of the last week? I can’t judge it, I can’t help nudge her in any direction. She has a tendency in many situations to be passive, to not push, so part of my likely job in the six months is to help her self-advocate or to advocate when she’s not feeling up to it. But how do I advocate when I can’t point to anything as a problem? If she’s not sleeping well, for instance, how do I as an external person help advocate if I don’t think the doctors are doing enough? She experienced strong headaches over the last week, and the medical response was “take Tylenol”. Is that sufficient? Should she be pushing for something more aggressive? Should I be helping push? I don’t now.
The symptoms and problems are invisible, the silent disease that everyone expects, but I wasn’t expecting the treatment to seem invisible either. If you saw her in the house, and knew her well, you might notice she’s a bit more tired than normal, less energetic, less interested in going out to do something, shorter periods of focused concentration. But just visiting? You would see nothing.
But I can point to my symptoms. I’m also unfocused. I don’t really want to be at work, I could care less about what is going on with my files. It’s not a priority for me. It isn’t a distraction to be there, because there’s nothing specific for me to worry about. Some people find it helps to keep working, as I did when Andrea and Jacob were home together after he was born and going through issues. As stressful as that time was, sometimes it helped to zone out and just do my job. A break from the all-day reality of working about Jacob or his future.
For Andrea’s treatment, I don’t feel a sense of dread. I feel confused more than anything. If I can’t see harsh aspects of treatment, and I can’t see signs of the disease, will I underestimate how bad it is and miss signs when she really needs me? For day 1 of her treatment, I was with her, but I didn’t really DO anything. I just hung out with her. I helped her walk to the bathroom, I handed her food from our packed lunch, I handed her the water bottle regularly. But I wasn’t “entertaining” her, we didn’t play games/watch TV/read/listen to music. We just sat there. Drip, drip, drip. I was the first to notice her rask and hives from the reaction to the drug, but that was by mere seconds before the nurse would have seen it. I listened regarding meds, etc, which is useful in and of itself.
Don’t get me wrong, being there is enough, I know. I just expected there would be more to do, more support that was obvious. Almost like a guide that would be called “what to expect when you’re not expecting”. And without that, I feel a bit at loose ends. I don’t feel like working on anything productive, for fear that I’ll be needed for something. Even if I did, my focus isn’t really there. Writing this has taken me a week to figure out what to say. And I’m trying very hard to leave room for Andrea to blog about her own stuff.
Week 1 of round 1 is done, and she waits for her next round to start in 3w. What will the next 3w look like? No one knows. What will R2, R3, R4, R5, or R6 look like? No one knows. Will there be an R7? No one knows. We just wait and see. We have a date for her last supposed treatment, and it coincides with some stuff going on at work too. A graduation date of sorts. But what will that look like?
Will she be able to go out more? We’re likely in continued lockdown as a household for 6 more months, less interested in the lifting of mask mandates than we are in keeping her even safer than she has been in the last 2 years. The Ministry of Education is lifting masks at school after March Break, and even Jacob is mixed in his reaction. He likes not having to wear one all day at school, but he would rather keep doing it in his class if it would keep his mother safer. The idea of going to a hockey game, or an event at the local theatre, all of it sounds good. Even being in a movie theatre. But right now?
My reaction is the same as when Andrea was on bedrest and decided to put a pizza in the oven. The benefit is not worth the risk. Which puts us almost completely in a holding pattern, or at least it feels like one. While we can’t put our whole life on hold, it’s hard to plan when you don’t know what to expect.
I’m planning to do some stuff in the backyard, to make sure she can use the gazebo almost daily. To be able to go for walks each day in the neighbourhood, once the snow clears, or to take her to the malls and let her walk with the old folks. To be able to do some socializing outside for dinners on the deck if possible, even if indoors here might not be viable options.
To illustrate the pernicious nature of the uncertainty, consider that I had been thinking of buying a 3D printer to go in the basement. Right now? My reaction is that it isn’t a priority and I’ll figure it out in the fall. Why? No reason. I just don’t know if it’s worth the mental energy right now to try to learn something new. I’ve got other things I can do. But if I stretch the reasoning, I’m basically saying I can’t buy a 3D printer right now because my wife is going through chemo. Huh?
So what am I actually doing instead? Binge-watching comfort food in the form of shows that I have already watched in their entirety. Grimm, Arrow, Mentalist, Star Trek: TNG, The West Wing, Alias, etc. I have some new stuff in there, or at least new to me, in Supernatural, Once Upon A Time (I stopped watching mid-series), but it is all relatively familiar pablum. I have some writing I want to be doing, or more accurately, that I want to want to be doing, but right now? I feel like we’re on hold.
People often say they feel the same, waiting for the other shoe to drop. In my case, I haven’t even heard the first one drop yet. It’s weird.