Sometimes things get hard to deal with

Lyra and Adam at my chemo
It was nice to have my family hang out with me during chemo.

The last two weeks have been, to say the least, extra challenging. I don’t think I’ve ever felt so keenly the gap in our lives that exists because our extended family is four provinces and three time zones away.

Before chemo on the second of December, I could feel dread growing. In the words of the tenth Doctor, I did not want to go, and the sense of impending badness kept building. But I did go, of course, and Adam and Lyra both accompanied me. Lyra was curious about it, and I wanted to demystify the process a bit for her, so she came along and watched, and learned, and played with Adam while I sat in my chemo chair and felt my thought processes slow to a crawl. It was nice to have her there; but it was still the worst chemo session I had been through to date.

We went back home, and I proceeded to feel exhausted and awful for a couple of days. The highlight of the week was my work Christmas Party on Friday the 6th — you can’t not have fun at a 20s Murder Mystery. Adam and I were grateful for a night out without the girls, and we both had a good time.

On Saturday, things started to go downhill. I hit my lowest energy point in the cycle, and could barely find the energy to get up off the couch. I let Adam sleep as much as I could, so he could recover from the party, and played games and watched movies with the girls. And I ordered groceries online for delivery the next day, because we were running out of food and nobody had the energy to get to the grocery store.

Sunday morning the groceries arrived, and Adam took Lyra out for an Adventure Day at the Vancouver Aquarium while Pandra and I stayed home. My energy was still very low, but I could manage chasing a toddler around for the day in the house, even if she was a bit cranky. I basically didn’t leave the house from Friday night after the party until Monday morning, though, and it was not good for my health.

Chemo cycles and emotional well-being

I have discovered, after three hits of chemotherapy, that I have a definite mental health cycle that comes with it. I get distracted and start to dread going in for chemo a few days before I’m due for the next session — and it stresses me out. Right after chemo, I feel dopey, slow, and stupid which mostly just frustrates me and makes me a bit angry. But those low energy days that fall on the weekend after my chemo? Those are the worst.

Those two days become a strange emotional feedback loop. I don’t have any energy to do anything, so I sit on the couch and rest. This gets boring fast. Once I’m bored, I start to feel unhappy, and I know it’s because I’m bored. I try to think of something to do, and get overwhelmed at the thought of it, so I don’t do anything, and then I start to feel depressed because I am bored. And once I’m depressed about being bored, I get more bored and frustrated. And then I start to look for people outside of myself to talk to, preferably in person. Except that it’s the weekend, and it’s December, so everyone I know is exceedingly busy doing family/holiday things, and they don’t have time to just show up at my house for a cup of tea or to hang out for hours with no real purpose. So I feel more lonely, and send out a sad, basically pointless call on various communications channels for someone — anyone — to come visit me. i know it’s pointless, because those vague requests for visits have never successfully attracted a visitor. And then I feel sorry for myself on top of the bored depressed inertia.

I don’t like feeling sorry for myself, but once I’m there, it’s really hard to feel better. I start feeling worse about everything that crosses my mind. I have trouble imagining when chemo will be over and remembering how it feels to not feel as bad as I do at my lowest point, and it’s painful and demoralizing. I look at my daughters and wonder where I’ll find the energy to play with them, because there is no reserve left. I think about how it’ll feel to be able to think straight and write clearly and hold a fork without shaking again, and I get frustrated that everyday things are so hard.

All of this was weighing on me heavily. And then I started to think about Christmas.

I love Christmas usually. This year, though, it’s complicated. Mostly because of the cancer thing.

They’ve finally scheduled my IV port surgery. The original requisition got lost somewhere, so the hospital never called me. I was suspicious about that. Once they realized it had be lost, my doctor resubmitted a requisition and I heard back within a couple of days when my surgery was booked for: the morning of December 24th.

I’m looking forward to having the port for chemo, especially after my last session. My arm felt like it was burning for a week or more, and the chemo took an extra two hours just for the one drug that burns my arm, because they had to dilute it with lots of saline and then slow down my intake of it. I have crappy veins and I’m sensitive to the Dacarbazine. The port will make it better.

But I really don’t want to have surgery the day before Christmas. It’s a fact, and it can’t be moved up (my doctor apparently tried, but no luck). I don’t want to be sedated on Christmas eve. I don’t want to be recovering on Christmas day. And I didn’t really want my next chemo session (December 16th) to be without a port. All of these things added to my general unhappiness over the past couple of weeks. And then five days after Christmas I’m back in chemo. And I won’t see much of my friends because they’ll all be busy with family, and our extended family other than Adam’s brother is all in Ontario. I’ll be too tired or in recovery to do anything fun. I want to make the best of Christmas… but it’s hard, and thinking about it just makes me kind of depressed.

So this was all on my mind over my lowest point in my cycle, when I am most prone to loneliness, depression, and feeling weak and useless.

And then Pandra got a fever.

She had a cold already. But sometime over the weekend, a fever developed, and she was absolutely miserable. She started waking up and not being able to go back to sleep because of the discomfort, and Adam was the only one who could take care of her. He took Monday off so he could do just that, since I need to avoid illnesses that include fevers. And then she was the same (or worse) on Monday night. And through Tuesday. Adam took her in to the doctor’s office, where they found that she had an ear infection in both ears. Her inability to sleep, and her obvious ongoing pain, became much clearer. Wednesday, she seemed to be feeling a lot better, and we were relieved to be thinking about sending her back to daycare on Thursday morning. But then Wednesday night her fever came back, and she spent more of the night awake than she did asleep.

Five days straight, Adam had to get up multiple times in the middle of the night, for hours at a time sometimes, to take care of a baby, and then miss work the next day to take care of a baby. If I could have taken over, if I had been allowed to, I would have in a second; the feeling of utter helplessness while I watched her feel so much pain, on top of coughing and crankiness and exhaustion, and not being able to cuddle with her or do much of anything to make her feel better… it just broke my heart. And watching Adam take on all that responsibility, and get more and more exhausted and delirious with lack of sleep, was beyond frustrating. There’s only so much SuperDad the world can ask from one person, and he was getting close to a breakdown. It got tense.

This is Pandra demanding that Adam get her dressed and take her out of the house. She was persistent.
This is Pandra demanding that Adam get her dressed and take her out of the house. She was persistent.

We kept her home on Thursday as well, and she slept some during the day. The antibiotics for the ear infections seemed to finally be working, and she was feeling better. Pandra hadn’t left the house since Friday of last week, and Adam hadn’t been out since Sunday — they were both going stir crazy. She finally bullied Adam into taking her out for a walk. She was feeling pretty much normal (if exhausted) by the end of today, and there was finally no sign of a fever. But Adam has already missed four days of work and his office Christmas party. We are hoping beyond hope that Pandra sleeps through tonight, and there is absolutely no fever to be found. And I’ve managed to catch Pandra’s cold (although not the fever) even though we tried so hard to avoid it.

So now I’m out of the depression phase, but I’ve got a cold, and I’m grumpy, and I’m starting to count down the days to my next chemo session with a growing sense of unease. Adam is exhausted and grumpy. Pandra is getting better. And Lyra just keeps on keeping on. Our friends are going above and beyond, doing things like bringing us dinner and delivering groceries when we need them. They are all beautiful people who we love dearly.

But I have to admit that this week is one of the times I’ve felt like having family nearby — family that could take Pandra overnight, or help us take care of her when she’s sick occasionally so Adam doesn’t have to miss so much work when I can’t pick up the parenting slack, or sleep over at our house for a day or two so we can escape to a hotel room and get a solid night of sleep alone — would make a world of difference. Usually we make things work. And we will get through this rough patch, too, with the support of our friends. But so much pain could have been alleviated with the help of someone who could make that extra commitment that you can only ask of family.

Most of the time I can accept that this is not something that we have access to. But this week, it’s been hard.

And life goes on.