Parental self esteem

Full disclosure: I am in full-on muddy-headed post-chemo haze, so some of this might be rambly.

None of the parents I know, if asked, will tell you that they’ve got this parenting thing figured out. Not one of them. They all seem confused by their children’s actions on a regular basis, busy, and trying their best to do what’s right for their families, and especially for their kids. Myself included. We all seem to think that, somehow, we’re doing something that will screw up our kid. And, in some way, we probably are. But I’m pretty sure that the fact that we’re even worried about it is a sign that we’re on the right track, and that the amount and type of screwed-up our kids end up with will somehow be lessened over what it might be if we didn’t worry, if we didn’t care about our actions and their impacts on our children.

Sometimes — often, even — I my fellow moms put themselves down for not being good enough at something, for not being able to follow through on something, or for wanting to be capable of doing things that just don’t fall within their field of knowledge, interest, or capacity. I’ve done it, but I’ve tried more recently not to. The ongoing cancer experience has really cemented that for me, although I started paying attention to it last year sometime. I see some of the other moms at Lyra’s school organizing things like group gifts for the teachers, and planning playdates, and going to PAC meetings, and I wonder if I should be doing that. I have friends that sew, and I

I see other moms choosing to stay at home and homeschool their kids, and I think that’s awesome, but it’s also something that I am really not interested in taking on myself, even if it were an option for our family (which it’s not right now). I would be a terrible stay-at-home-homeschooling mom. TERRIBLE. And I see other moms going super-eco crunchy momma, and I love the idea of so many things they do, but beyond that I know I would get irritated with the process of doing those things and ultimately hate it and be resentful of it. It’s not for me. Life is too short for me to take on extra work and activities that I’d be doing alone (because I would be, no matter how hard I tried to force the family to take part) when I could be having much more fun and interesting experiences that both me and my family will enjoy.

I want to have adventures with my family. Little ones, like bike rides and hiking in the woods and playing video games together on Saturday mornings and experiencing well-written cartoons and movies (and a few crappy ones, sigh). Big ones like traveling to new places when we can manage it, or visiting some of the tourist activities nearby that we haven’t gone out to yet, and plenty of things we just haven’t though of yet. Those are on hold until cancer is done with.

So there are a lot of parents out there, who do a lot of different things for their families. I admire many of them for doing those things. I am envious of their talents and abilities, and their drive to do things that I just can’t see myself learning or being any good at, and can’t find the energy or enough interest to learn how and follow through myself. Sometimes I feel bad about this, until I remember that I’m only one person, and I can’t expect to be and do everything that every other person combined is out there doing and being. My children are not going to be irreparably damaged by my inability to sew or can my own food. They won’t be disappointed in my preferring to take part in other people’s teacher gifts plans instead of coming up with something lovely, hand-made and personalized to give to their teacher each year. Not that I wouldn’t support THEM in doing that; but I’m not going to do it for them.

Instead there will be adventure days and Saturday mornings at home playing Ni No Kuni and spending time with each other doing things that we enjoy, and spending time not with each other doing things that only one of us enjoys. Because balance. And I won’t feel like I’m less of a mom than someone else is because they have different interests and priorities than I do. And I won’t feel bad about not doing things that the other parents are doing with their kids because it’s just something that’s done, especially when it’s not something we’re collectively interested in doing as a family.

If I think I’m a terrible mom for not doing what the other moms are doing, it’s bound to come through somehow to my girls. They’ll see me putting myself down for things that don’t make much sense. If it happens to much, they might start to model that behaviour, and I could start to see their self esteem drop because they think they need to do and be all things, as much as I think I need to do and be all things (and perfectly of course, because I like to be good at things I do). Right now they are young enough to be confident about most things, and I love that. I don’t want to be the reason they question themselves.

I just hope that the other parents I know that go through the same feelings of self-doubt and frustration at not being able to do all the things don’t wear themselves out with worry that they’re just not enough. Maybe having cancer and really connecting with life and time has given me some extra focus on my values and priorities. I’ve been thinking a lot lately about the things I want to do when I’m not utterly exhausted from the chemotherapy, and none of them are the things that I sometimes think I should be doing to be more mom-like according to other people’s Facebook update standards. I’m okay with that.

I’m owning my so-called failures as a parent, because they’re not failures. They’re just priorities and levels of interest. And we’ve all got different ones.

Silver family
Because these people I’m with are awesome

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.

Uncomfortable truths: Side effects of chemotherapy

I’ve been keeping track of my chemotherapy side-effects as much as I can, because I like to document everything, and because I know I won’t remember it all when it’s over. Most of them are as expected — fatigue, feeling nauseous, not being able to taste things. I’ve had it fairly easy, on the scale of crappy chemo side effects. But that isn’t to say that it’s been a breeze.

Some of the side effects of the drugs I’m on are what one might call “safe for public consumption’ — as in, talking about them doesn’t really make anyone uncomfortable. But there are others that aren’t so pleasant to talk about or hear about. I’m not willing to censor for myself for the squeamish, however, so if you’re reading this and don’t want to know the uncomfortable truths about my body while it goes through chemo, you may wish to stop reading now. Not that all of these will make you uncomfortable, or maybe not any of them… just be aware that some of them might be what you’d consider Too Much Information.

Things just aren’t quite right

The first set of side effects are the ones that just make everything strange. Included in this category is my newly discovered sense of taste: or rather, the lack thereof. I can’t taste much anymore. It seems that sweet has become just plain disgusting, so I don’t eat many sweet things these days. I put vinegar on french fries with lunch the other day and I couldn’t taste the vinegar; added more, to no avail. Sour is gone too. Foods that used to have a pleasant flavour are either bland or gross, and foods with an unpleasant texture and no flavour are an entirely new experience. I used to eat oat bars from Starbucks as an occasional treat; they are now flavourless mushy piece of damp cardboard. A turkey burger was a dry piece of cardboard surrounded by squishy flavourless goo and a mushy bun. Texture has become an important factor in my food choices. Crispy, crunchy, multi-textured foods are good. Lemon ginger tea tasted exactly like hot water. Mushy, squishy, gooey, or overly dry foods are not. I can still taste spicy things, so I put sriracha on almost everything I make at home. And I can also taste peppermint, which I don’t even like but have started drinking the tea anyway, and salt. Food is an entirely new experience.

Another weird side effect that’s more annoying than bad is what I’m starting to think of as my chemo face mask. I find it very hard to explain to people, and I’ve tried various methods of doing so, but I don’t know if it’s made sense. From time to time (usually at least once a day, sometimes for hours, sometimes for less time) my face starts to feel thick. It’s a bit like if I was having an allergic reaction to something on my skin – no hives or burning sensation, just a feeling of thick, almost-but-not-really tingling of the face. It feels a bit like it’s swelling, but that isn’t what’s happening at all. As far as I can tell there is no physical reaction that’s happening — there is no swelling, no rash, and nothing looks abnormal. It just feels very, very strange… and thick. Like I’m wearing an invisible mask over my face. It is annoying.

And of course, there’s the infamous chemo brain. It’s a bit like baby brain — if you’re a parent, you may know what I’m talking about. For me, chemo brain seems to attack my communication centres the hardest. I lose the ability to type coherently. I forget simple words. I can’t string a proper sentence together effectively when I talk. My writing suffers. My short-term memory completely disappears, to the point that I need to take notes during a conversation with someone to make sure I know what they were talking about ten seconds after the conversation ends. I have to push myself to listen properly; my mind wanders very easily, and I lose focus completely on everything. And I forget important things, and little things. It’s frustrating — especially when communication is one of those things I like to think I’m good at.

Minor physical issues

I’ve had a few physical side-effects from the chemotherapy that aren’t really a big deal, but are worth noting. I’ve had some neck and back pain. My skin is exceptionally dry. My throat is dry, and I’ve had some phlegmy crud in my nose for a week. I get exceptionally tired every day around 2pm. My IV arm aches dully on occasion. My face is flushed and warm for the first four days after chemo. My fatigue has a definite cycle — I’m at my lowest energy level on the fifth and sixth days after chemo, and then I start to regain a sense of near-normalcy.

Fatigue is insidious and evil

My lowest-energy days fall on the Saturday and Sunday after Monday’s chemotherapy sessions. In a way, this is good, because I can just be at home. In a way it is also bad, because I am at home, but so are my children and husband, and the girls especially want me to do things with them. It’s a challenge. By the end of the day this past Saturday, I was so tired that I couldn’t think. While putting the toddler to bed, I had my first wave of fatigue-induced despair. I started to think about how exhausted I was at that moment, and how wrong and unhealthy I felt, and it overwhelmed me. I stood next to Pandra’s bed, looking down at her before turning out the light, and wondered how I was going to get through months of feeling like this. It upset me that I didn’t have the energy to play with her or Lyra all day, and that I was so tired I couldn’t stay on-key while singing to her. It isn’t fair to them, and it isn’t fair to Adam to have to pick up so much slack in the parenting and household-running departments.

I had to take a few minutes to let that despair wash over me, to let myself feel that frustration and sadness, because if I block it out it comes back stronger, harder, with a sharper edge. And then I carried on doing the things that had to be done, and I spent Sunday relaxing with my family, and by Monday morning I felt like myself again. I’m right — this isn’t fair. But it’s what we have to work with right now, so we will make it work.

Ah, the lovely digestive system

I’ve been lucky. I haven’t had the nausea and puking that many people seem to go through with chemotherapy. My anti-nausea drugs are doing a fine job of managing all that on my behalf. The closest I’ve come is an occasional dizzy spell and bouts of vertigo when I watch things move past me. This week I’ve had some stomach issues that manifest as queasiness that feels like hunger, or hunger that feels like queasiness. I can’t tell which it is, so I eat something and feel better for a while, until it comes back. That seems to be working, so I’ll stick with it. I’ve gained weight though, which is the opposite of normal for chemo patients, from my understanding. Not a lot… just a bit.

The drugs have, however, made me a bit constipated. I’ve been taking senna laxatives daily on the advice of the doctor and pharmacist, which has been working well, but there are evenings when either I forget to take them or irrationally think that I’m doing fine and don’t need to take them that night. This always ends badly. No matter how tired I am when I have crawled into bed and then realized that I forgot to take them, I really must get myself back up for them. Otherwise, the entire next day I feel crampy, bloated, and just plain bad in the lower abdominal region. It’s not the greatest of feelings. Oh yeah, and I get kind of gassy. Good times!

On the other side of it, when I do remember to take them, it means when I have to go, I have to go right now, or else bad things might happen. I’m learning the signs, and making sure I’m near a washroom when I need it. I would really prefer not to soil myself in public, thank you very much.

Anemia and girl problems

I was warned about anemia (low red blood cell count), and told to increase my protein. I’ve been doing so pretty effectively, but anemia has still been a bit of an issue. I notice it most when I wait too long between meals, or when I eat a meal that has too little protein in it. I start to get shaky and more hangry than I normally get (which is pretty hangry). I do my best to manage it, and I think I’m doing okay so far.

My period started the day after my last chemo treatment. It was considerably lower volume than normal, especially on the first couple of days. It stayed fairly light for the duration, and was generally less intrusive than it normally is, although I still got crampy and cranky for a couple of days. So there was an effect, but it wasn’t terrible.

Energy and activity

Jenny and friends running
I guess I can still run 5k…

Because my energy is pretty low for the first week and a couple of days after chemo, I don’t get much activity in. I felt overwhelmed by my lack of DOING, so by the end of my two-week cycle, when I started to feel normal again, I crammed as much activity into my two weekend-days before my next chemo treatment. On Saturday I went for a hike with Adam up the mountain by our house, and it was lovely. On Sunday I went for a 5k run with Adam and our friend Maryn, which felt really good (hooray for weekends with babysitting!) then came back home to get the girls and go out for a walk in the woods at dusk.

It was lovely to get out so much on the weekend, but when we got into the car to head home, all I could think about was how much I was dreading going back in for chemo the next morning. I did not want to go. But go I did, to begin the cycle anew. It’s going to be like this for a few more months. I can handle it if I know what’s coming. I expect it will continue to have ups and downs. So does everything in life.

Yesterday was my chemo day again. It was not fun, and I could feel my ability to think and communicate draining away from me as I got pumped full of the chemo drugs. It was hard. But today I feel a bit better, and less tired, and I know what I”m in for over the next two weeks.