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.

Working through chemotherapy

Life hasn’t been put on hold while I undergo chemotherapy. I’m not really one to put life on hold, in general, and I haven’t felt the need to do so. I have been taking it easy when I need to, taking shorter days or entire days off, choosing not to commit to things because I don’t know how I’m going to be feeling when I get to the date in question, and that sort of thing.

And I’m still going to work. This seems to be catching people off guard — from family, to co-workers, to random other folks who hear about it. But It is honestly the best thing I can be doing right now, for my own sanity.

I have some good reasons:

  1. Work keeps my brain occupied. If I were to sit at home and spend my time relaxing, I would get bored. I don’t enjoy being bored. It’s really not for me. When I get bored, I get sad. When I get sad, I get apathetic. When I get apathetic, I have no energy to pull myself back out of being bored. And if it goes on too long I start to feel completely drained and depressed. It’s just a bad thing. Plus, right after chemo, I can’t even play video games to entertain myself — they trigger nausea. Nobody wants that.
  2. My workplace is interesting, fun, and understanding. You may remember that I just started this job at Affinity Bridge in July. I’ve only been there for four months now, and I’m still learning the ropes and figuring things out. I like the challenge. But I feel like if I take too much time off, I’ll forget things. Not that they would hold it against me — they’re among the most understanding, supportive, and fantastic bunch of people I’ve ever been able to call my team. If I need time to focus, or to go home early, or an unexpected coffee break, they get it. I fell asleep in a meeting one day last week when it descended rather deeply into programmer-talk. They may have made fun of me for it, but they certainly won’t hold it against me. And that is just what I need right now.
  3. I don’t feel that bad. Yes, I’m doing chemotherapy. Yes, there are some crappy side-effects that include dizziness, chemo-brain (aka forgetful absent-mindedness with a side of  inability to type accurately or remember words), occasional narcolepsy, and a general low-level energy drain that slows me down a bit, among other things. But it’s really not unmanageable. I can still get things done and contribute in some sort of valuable way. I can be useful. I am not a fragile little snowflake who will melt if you breathe on me wrong. And that makes me happy.
  4. Keeping things somewhat normal while something entirely abnormal is happening to my body helps me stay grounded. The chemo and anti-nausea drug side-effects can be strange sometimes. If I have too much time to sit around just feeling things, and thinking about everything that’s going on, I could get lost in it. I’d prefer to be stable as much as possible right now, for my own sake and for my family. It’s good to have external things to think about.
Dominion building staircase
Keeping my perspective at work helps keep me sane. Just keep climbing those stairs.

So I go to work when I feel up to it (which is most of the time), or I work from home, or I take shorter days, or I nap when I need to. I’m in a bit of a haze sometimes, and I can feel my brain acting sluggish, but when I work through it I feel better. I want to keep my brain working, even when it doesn’t want to. I’ll use whatever memory tricks I need to, I’ll ask questions when I have to, and I will try not to be too apologetic for things that don’t matter that much, because I am not a rocket surgeon and no one will die if there’s a typo in my documentation.

When I’m in a low phase and immuno-compromised from the chemo, I may not go to work if people are sick, or if I’m worried about the commuter train. The family and I have have our flu shots, at least, but the kids and Adam all had colds in the last week and I had to do my best to avoid too much contact. It’s almost easier to avoid contact with people at work. They don’t drool on me. At least not so far.

Working has been good for me through this. I am lucky to have such a fantastic and understanding workplace, boss, and set of co-workers. I feel comfortably free to do what I need to do to take care of myself through this, while still feeling like I am a part of the team — still needed, still important, but with the freedom to step back when I need to. I don’t know if everyone else going through something similar has the same kind of support network around them when it comes to their workplace. I’m sad for them if they don’t, but I know that there are also resources out there through the Cancer Centre that can help for that, if needed. There’s a social worker on my cancer team who told me that specifically, so I guess it’s an issue for some. That is unfortunate.

I am lucky. My workplace is understanding. My co-workers are awesome. I feel support from them throughout this experience. I have it pretty good, for a cancer/chemotherapy patient. And my life feels nearly normal for enough of the time so that I can be a stable, functional member of society and my family.

Riding my bike to conquer cancer

Today was my second chemotherapy cycle of eight. It went smoothly, although my arm is a little bit sore from the IV drugs. I’m looking forward to getting my port installed so I can upload the chemo drugs more efficiently and with less burnination of the countryside (aka my veins).

So I’m doing fine, and the doctor and nurse figure my hair will start falling out in clumps very soon with this treatment. Things are progressing as they should.

The Ride

For the past few years, my good friend Elijah has been taking part in the British Columbia Ride to Conquer Cancer. The first year, he was not a long distance cyclist and I watched him train and fundraise like crazy until he was ready. And then he did it, and was awesome. And then he kept doing it year after year, and I remained impressed.

When I had lunch with him early on during my cancer diagnosing phase, he told me I should join him in the 2014 ride. I had joked in the past that I might do just that someday, but I was honestly terrified of the fundraising requirement — $2500 minimum to be able to join the ride. They take their fundraising seriously, and I was severely intimidated.

With cancer and chemotherapy looming ahead of me, I thought about that barrier, and the fact that I don’t own a road/commuter bike anymore (another barrier) and thought, hey… why not? When I couldn’t come up with a real reason beyond those to things I was afraid of (raising $2500 and budgeting for a bike), I realized that they were just that — fears — and if I could get through the cancer and chemo experience, budgeting and fundraising would be a breeze.

So I said yes.

BC Ride to Conquer Cancer

I am now fundraising and thinking about what bike to buy and trying to put aside money for said bike and thinking about training for a 200 km ride over two days from Vancouver to Seattle. The ride isn’t until June, so I have time to finish my chemo and do some solid training, once I get a bike. I’ve nearly met the $2500 minimum, and if I do I will increase my personal goal and do my best to meet it before June.

This is important to me because so far science has done a bang-up job of figuring out what’s wrong with me through some amazing diagnosis tools and tests, an impressive collection of anti-cancer drugs with a side order of anti-nausea drugs, and a whole team of incredibly awesome people — doctors and nurses, researchers, social workers, dietitians, pharmacists, and so many more — whose jobs are to cure me. I want to give back to the science that has done so much for me, and I need your help to do it.

After kicking cancer’s ass, riding 200 km in two days will be so easy. Right? Right?

I hope so. If nothing else, I feel inspired to get there. If you’d like to help, please consider a donation… and thank you to everyone who has helped me get this far.

I’ve always wanted to shave my head…

I mean it. I have always wanted to shave my head. My hair is thick, dark, and dense. There’s a lot of it, and on hot days, or when I’ve been wearing a bike helmet, or when I go running, my hair gets in the way. Plus, I love rubbing someone’s shaved head. It feels so nice.

The first thing I thought of when chemotherapy came up was that I would lose all my hair. Instead of getting worried or nervous or freaked out by it, I got excited. With as much hair as I had when I was diagnosed (it was well past my shoulders) I knew that the hair loss process was going to be a bad thing for our shower drains. I had to take action.

First, I decided to donate my long hair to a cancer wig place. I went to a salon where a friendly hairdresser named Safa gave me a very nice short haircut and sent the remains off for donation. But I knew that wouldn’t be enough.

Let’s shave Jenny’s head!

After my first week of chemotherapy, I knew it was getting time to get rid of the rest of my hair. On short notice, I booked the common room in my townhouse complex, invited a bunch of friends over for a pot luck party, and told them they could all help me shave my head.

It was a great party, full of good friends; the people I know are around, ready and willing to help me and my family get through chemotherapy, and cancer, and everything in between. It’s something we need, since most of our extended family (except Adam’s brother Jordy) is three timezones away. The affirmation of our community of friends meant a lot more to me than I could really express at the party. One friend talked about her take on the whole thing in her blog.

Lyra — the second person to help me shave my head, and the first of the children to give it a try — wanted me to have a skunk hairdo. The closest we could come up with was a mohawk… so that was what I went with.

The thing about hair…

Here’s the thing about my relationship with my hair. It’s completely temporary. Got a bad haircut? It’ll grow out. Haven’t had a haircut in a year and a half? Whatever, it’s fine, got get a haircut or something. Not happy with the colour? Try a different one. Don’t like the results of the new colour? Wait a bit and see what happens, or try again. I was a redhead for six years because I was tired of dark brown, and then one day I stopped dyeing my hair. I’ve had purple, blue, pink, and orange hair, usually on purpose.

But I’ve also never been someone who puts much daily effort into my hair. When it’s long, I get the most compliments on it if I haven’t washed it in four days. Most of the time I remember to brush it in the morning. I own a hair dryer, but it hasn’t been used in six years or more. I like my hair, but I don’t give it any extra attention. It’s just there. And it keeps my head nice and warm.

Now I have a mohawk, and I’ve been going to work like normal, and wandering around my usual haunts. From those who know me I’ve had nothing but compliments. Apparently I can rock a mohawk, and that is kind of awesome. I’ve seen a few confused glances from strangers, and I sincerely wonder if the ‘hawk changes people’s perception of me on levels I don’t know. It might be harder to, say, get a job after an in-person interview or something. Or maybe it wouldn’t, I don’t know.

What I know is this: my friends are willing to come to a party just to help me shave my head. I know a lot of great people whose opinions of me obviously will not be lessened by my ‘hawk — and even acquaintances have had a universally positive response, from the baristas at my usual coffee shop to the people who take care of Lyra before and after school. Some of those folks don’t even know about the cancer thing.

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Soon enough my hair will start thinning and falling out. I will likely shave the awesome mohawk right down when that happens, and go with the bald look.

But I have a feeling that, after chemo is over and done with and my hair has returned in whatever form it so chooses, the mohawk may reappear… because I rather like it.

Lyra now tells me that she wants to shave her head into a mohawk too. What better indicator of its awesomeness could there be but mohawk solidarity from your five-year-old daughter?


After chemotherapy: A week on

My first week post-chemotherapy is winding down. I have reached a level of tiredness that goes beyond what I would have ever called ‘tired’ before. It’s almost like I can feel myself physically breaking down internally, and there is nothing much I can do about it but ride out the wave until I reach the shore.

But let’s back up a bit.

Monday was chemo day. I already told you all about that. Tuesday was my first recovery-from-chemo day, wherein I stayed home and relaxed. I went out for an hour with Adam to run errands and felt reasonably well, all things considered. I declared Tuesday a resounding success in handling chemotherapy, and decided to go in to work the next day.

Outside the hospital after my chemotherapy on Monday
Outside the hospital after my chemotherapy on Monday

Wednesday morning, I woke up on time and took my meds, and then made it out the door in time for my train. I was in a good mood; going to work made me feel like things were still somewhat normal, even if they’re not. The anti-nausea medicines did a great job of managing things. The first weird side-effect I noticed was that, after riding the commuter train in to work, my ears got blocked up and wouldn’t equalize. It lasted for about an hour and then went away.

Taste had already started to go away by this point, but it wasn’t completely gone. I went for a meat-fest of lunch with my co-workers at a Southwestern BBQ restaurant, and did my best to increase my protein and iron intake. It was good. The after lunch food coma was partially due to the amount of meat ingested, but by 3:00 p.m. Internally, my mind was muddled and my brain felt sluggish. I was feeling drawn and tired, so I abandoned my post and fled for home.

I still felt all right enough to go in to work on Thursday morning, however. Once again, the train ride made my ears block up for an hour. I noticed that food was remarkably flavourless, including strong flavours like goat cheese and bacon, but I enjoyed my bacon breakfast sandwich anyway. My day went by, and I was tired early and fled for home once again. I noticed that my mouth was hurting a bit, although I hadn’t developed any mouth sores thankfully – there was just a dull ache in my gums and jaw. And I was more tired than I had been the day before.

Friday, Adam and I had plans to meet at lunch and go for a tour of the TRIUMF Cyclotron at UBC, so I went in to work for the morning. I was noticeably more tired by mid-morning on Friday, and the plugged up ears kicked in and didn’t go away for the majority of the day. By the time we had arrived home after what turned out to be a very long day that included eating at wonderful Burgoo, I was completely exhausted.

Approaching limits

Saturday was harder. My energy has hit an all-time low. I honestly can’t remember a time when I felt quite the way I do now; I suppose that’s because I’ve never been here before. I made pancakes and sausages for breakfast, ate with the family, and made my way to the couch where I lounged until it was time for a children’s birthday party.

The birthday party was easier than it could have been. I played wallflower and sat on the floor while Adam chased Pandra around and Lyra played along with the party games. It felt a little weird for me, though. Parties are already awkward and strange, and feeling listless doesn’t help so much. I was beyond the point of feeling like the stealth cancer girl anymore.

At home in the afternoon, I lounged on the couch some more while my children ran amok. It was beyond exhausting, so that was about all I managed for the rest of the day.

That was the first time, really, that I felt like things were difficult… that I really felt the potential for this process to become a challenge. Finally, everything had started to feel really hard. I was sluggish and and tired, and I didn’t care if anyone could tell. I didn’t have even have the energy to feel guilty about Adam single-parenting our kids for much of the day. At some point it just doesn’t have any impact anymore.

Sunday fun

Fortunately, I feel a lot better today than yesterday. The underlying exhaustion hasn’t gone away, but spending much of yesterday resting means that today I don’t feel as immediately wrecked as before.

This is a good thing, because this afternoon we’re going to have a party and shave my head before the hair starts falling out on its own in clumps. I have a lot of hair, and it is very thick. I’d rather it not clog my drains… plus, I have always wanted a good excuse to shave my head, but I’ve never had the nerve to follow through.

I like throwing parties. They are generally haphazardly planned, often without much lead time for guests, and they always seem like they could easily be a huge failure. Somehow, though, things work out in my favour: people show up, and there’s enough food and drinks, and everybody has a good time. I take the ‘if you build it, they will come’ approach, and so far it hasn’t steered me wrong.

That’s what today is. I’ve invited random people (and probably forgotten some, oops) and said ‘just show up and bring some food, or don’t bring food, it’ll be fine.’ My head will be shaved by whomever wishes to make the attempt (multiple times, maybe) and if anyone else feels like shaving their heads they can (although that’s not the point).

We’re getting together to celebrate. I won’t let a bit of chemotherapy and cancer prevent me from having a good party with my friends. Moping about never solved anything.

Of course there will be photos.

A day in the life of a chemotherapy patient

Monday morning started off the way most Mondays do: getting the kids up earlier than they want us to, feeding them, packing them up for daycare/school, and heading out the door to deliver them. But instead of going to work, Adam and I got some breakfast with coffee and headed to the hospital for my first chemotherapy treatment.

While I’ve read plenty about chemotherapy and the drugs involved, and was sent this great post about what it’s really like to get chemotherapy, I had some vague trepidation about the process itself. Knowing on paper what’s to come and actually experiencing it are two different things. Having already gone through a false start to chemotherapy last week, I had already gone through a few nights of restless sleep and anxiety. Last night it took me a little longer than usual to fall asleep, but it wasn’t too bad, and once I get to sleep I was good for the night.

About an hour before chemo was due to start, I took the first of my arsenal of anti-nausea drugs – a fancy expensive drug called Emend.

Jenny Lee sitting in a chemotherapy chair
Chewing on some ice, getting the red devil injected, enjoying the comfy chemo chair.

At the hospital, I headed first to the lab to do some bloodwork. They need to check my blood counts before I go to the cancer centre for chemo: they check the red blood cells for signs of anemia (low iron), check the platelet count (platelets make my blood clot, which is handy), and white blood cells to make sure I’m not at a high risk of infection from low white blood cell count.

After that was done I walked over to the Cancer Centre, where I’m supposed to weigh myself and hand it in to the pharmacist. Having worked in a couple of food production factories, I already know how to tare (or zero) a scale, so it’s not really a tough job. The pharmacist makes sure my weight hasn’t changed and gets the drug dosages ready for my chemotherapy treatment.

Lily, a friendly chemo nurse, sat down and gave me a warmed flannel blanket so I could settle into my very comfy chair. She hands me four pills — two more of the anti-nausea drugs. Ondansetron (aka the electronic music robot reindeer that pulls Santa’s sleigh?) is a receptor antagonist that helps fights nausea by reducing the effects of seratonin, although I don’t entirely know how it does this. I’m sure it’s pretty badass about it though. The other is Dexamethasone — a steroid. I haven’t figured out how this one fights nausea, so maybe it’s for something else.

She then looked for a good vein to put in my IV, and was not impressed with her options. I’ve been through a lot of bloodwork, and I can attest to this: my veins aren’t so keen on complying. She put her IV into my left arm first, but the vein collapsed in on itself and said ‘NOPE’. Attempt No. 2 on the right wrist was more successful, but only slightly. So we discussed the idea of putting in a mediport (let’s just call it a port like everyone else does), which seems like a good idea to me.

I might be set up with a port in time for my next treatment, or I might not. Adam and I figure we can use it not just for chemo, but also for food, coffee drip, an audio input, and a direct fibre-optic connection to the internet. I’ll be going cyberpunk. What’s another teeny surgery on top of the rest, if it’s going to make life easier overall? Also, Cyberpunk!

ABVD: The Hodgkins Lymphoma treatment

I’m going to go over the chemo drugs I get, but please note: I am not a doctor, and this is not medical advice. This is my understanding (very simplified) of what these are and how they work. If you want to know real information, do some proper research and talk to a doctor.

A is for Adriamycin

With the IV in and the saline drip making my arm feel cold from the inside, nurse Lily brought over the first of my chemo drugs: Adriamycin.

Adriamycin is bright red, which has spawned the lovely nickname of the red devil. It’s given via a huge syringe over a span of a few minutes. The nurse plugged the syringe into my IV drip and sat there adding it, bit by bit, until the huge syringe was gone. Side effects of this one include pee turning neon pink, mouth sores, and hair loss. Oh, and nausea. And if you get it on your skin, it actively burns you. If it goes into your veins too quickly without diluting well enough, it burns your veins. Unpleasant stuff, the red devil.

The drug is also called Doxorubicin; Adriamycin is a brand name. It’s a drug that comes from bacteria found in dirt. They found some soil-based microbes in an area surrounding a 13th-century castle in Italy near the Adriatic Sea, studied it for years, and discovered that it was effective against tumours I honestly couldn’t make this up. Years of study and modification have made it less toxic (although still kind of toxic, especially to the heart). But don’t worry folks, it’s natural! Just don’t read the adverse effects on the wikipedia entry about it unless you feel like scaring yourself some.

I like to think of these drugs as itty bitty anti-cancer super-soldiers. In the arsenal, Adriamycin is a massive shirtless behemoth of a hairless monster-man hybrid with a glowing red sword. He looks scary, but he’s almost all talk — when he swings that sword and hollers at the cells, their DNA panics, gets distracted, and forgets how to divide and reproduce when it’s supposed to. Unfortunately, he’s kind of a douchebag and he scares a lot of other cells too. And everybody wishes he would put some clothes on over that loincloth he’s wearing…

B is for Bleomycin

The next drug Lily brought over to me was Bleomycin. This one is an antitumor antibiotic, and it’s made out of a naturally occurring soil fungus. I am not joking, it’s another natural drug. Who knew that dirt was so full of curative properties? No wonder I let my kids play in it!

Its side-effects include some scary things like pulmonary fibrosis and impaired lung functions (it is suggested that I no longer go Scuba diving or climb mount Everest), fever, hair loss and mouth sores again, and poor appetite and weight loss.

Similarly to Adriamycin, this drug works by making the cells forget how to divide and copy themselves. In the super-soldier army, Bleomycin likes to hang out with his good buddy Adriamycin. I imagine him to be a little like Chester to Adriamycin’s Spike, although that doesn’t mean they actually work together or anything.

Chester isn’t as big and scary as Spike, but he’s kind of distracting and annoying, so once again the cells forget what they’re doing and don’t multiply. Bleomycin irritates the cells so much that they give up and perform seppuku.

V is for Vinblastine

This is the first of my anti-cancer drugs that does not come from dirt. Instead, Vinblastine is classified as a plant alkaloid, which means it’s made from plants. It’s made from four separate plants: the periwinkle plant, bark of the Pacific Yew tree, the May Apple plant, and the Asian “Happy Tree”.

It was administered by hooking up a bagful of it to my IV line and letting it slowly drip into me.

I imagine Vinblastine as Audrey II from Little Shop of Horrors. FEED ME SEYMOUR! I envision many tiny Audreys running through my veins, screaming at my cancer cells and eating them up. Not because it’s accurate, but because it’s fun. Vinblastine inhibits the microtubule structures within the cells, which prevents them from dividing and replicating themselves, which ultimately kills them.

D is for Dacarbazine

Dacarbazine seems to be a strictly chemical drug — there are no castles, dirt, or plants involved, as far as I’ve read. There was research done in Alabama, and that research produced Dacarbazine. It also works differently from the other three drugs, by destroying cancer cells during their resting phase rather than during the dividing phases. It’s known as an alkylating agent.

Lily attached the bag of Dacarbazine to my IV and set it to drip into me for about 45 minutes or so. When I commented that my arm was aching a bit from it, she added more saline to dilute it as it went in, and extended the amount of time it was going to take. This is another drug that burns your skin and veins if it’s not well diluted. As of today, I have no pain from the injection site or up my arm, so I think it was diluted enough, thankfully.

Side-effects again include hair loss and nausea, as well as low blood counts (anemia) poor appetite, and elevation of blood liver enzymes. It can also sometimes cause flu-like symptoms and numbness or tingling in the hands or feet, although this is less often.

Dacarbazine is the ninja in my mighty army. While the other guys are attacking my cells head-on when they’re awake and trying hard to multiply, Dacarbazine is sneaking in under the cover of darkness, taking them out silently as they try to sleep. You never see Dacarbazine coming; silent but deadly. Unfortunately it also attacks all your fast-growing cells indiscriminately, so it has very poor eyesight. A blind ninja. But still deadly!

Talking with the dietician

During the chemo treatment, a dietician came by to go over my weight loss last year (making sure, once more, that it was good, healthy weight loss) and to discuss my diet. I need to increase my protein intake while I’m on chemotherapy — it helps fight off infections and the like. I should be able to handle that. She recommended lots of goat cheese. I can definitely handle that. And I have to eat lots of fibre, because some of the drugs can stop you up right good. Duly noted; I’d like to avoid that.

What’s next for me?

I came home from chemo yesterday and had lunch at the local vegan restaurant of tasty goodness, Chomp. Food will start tasting weird and flavourless soon, so I want to enjoy what I can now until this experience is done.

I spent the rest of yesterday relaxing. I had some mild nausea in the evening, so I took one of my additional anti-nausea drugs to help control it. This one is an anti-psychotic called Prochlorperazine, generally used to treat anxiety, tension, and delusion, which also happens to control nausea. It was helpful, but I only need to take that one on an as-required basis, so I’m not going to rely on it too heavily if I don’t feel bad.

By the time we were putting the girls to bed I was already quite tired. Once the girls were both down I started writing about the day. By the time I was half-way through my writing, I realized my brain was getting muddier and fuzzier, and I couldn’t focus. I was also having some trouble typing accurately, which made me crazy, so I decided to quit for the night and continue in the morning. I was in bed early and fell asleep pretty quickly.

Today I’m taking it easy at home, gauging how I feel and how controlled the drugs are keeping my nausea. It’s been good. I’m a little brain-fuzzed, but functional, and the nausea is under control. I just feel a bit off and muddled, otherwise.

I’m going to go out to run a couple of easy errands with Adam and see how that goes; if it’s all right, I may go in to the office tomorrow for part of the day at least — I don’t want to get stir-crazy at home if I can help it.

My hair won’t fall out for another week or two, so this weekend I’m going to have a head-shaving party. Come on out for the fun! Head-shaving is optional — I’m going to do my head, but you don’t have to.

The next chemotherapy session is in two weeks. But this time I’ll know what to expect, and it will be easier on my system, I’m told.

And life goes on.

Staging my cancer and working out my chemotherapy treatment schedule

Today was an unfortunate roller coaster of appointments being cancelled, chemo being rescheduled, and then cancelled appointments being re-instated, but things are now sorted out.

I met with the oncologist to go over biopsy and PET scan results and discuss any symptoms I have (which is none). I was told that my second neck biopsy (the surgery one last week that was not much fun) was ultimately unnecessary, because they sent the first biopsy to BC Cancer for full testing and they came back with a 100% positive result for Hodgkins Lymphoma. Isn’t that nice?

We have established that I have Classic Hodgkins Lymphoma, stage 2A, of the Nodular Sclerosis type. Here’s what that means:

I’ve got three tumours (found by the PET scan) all on the upper half of my body – so only one side of my diaphragm. That means I’m stage 2. They are located on my neck, behind my trachea (that one is the lemon), and in my left armpit — all three on lymph node areas, not on organs. These are good things.

I have no B symptoms — things like unexplained weight loss, severe night sweats, and an unexplained high temperature. They asked me for details about my recent weight loss, but agreed that it seems more likely related to running three times a week and entirely changing my diet while nursing a baby, than to the lymphoma. Also, the weight loss stopped in the summer, and I’ve been stable since then. My lack of symptoms is what makes me A instead of B. That’s another good thing.

My bone marrow biopsy was negative, so there is no trace of lymphoma in my bone marrow. My bloodwork all came back clear, so I don’t have any additional health problems that could complicate treatment.

Later, I saw the cardiologist, who had me hooked up to a holter monitor early this week. He is reassured that my heart is fine, my heart surgery ten years ago fixed the arrhythmia issue, and the Adriamycin (a chemo drug that can hurt your heart) should not be a problem. He was a very pleasant and very tall fellow.

Chemotherapy details

My chemotherapy was due to start tomorrow, then got pushed to next week since they thought they still needed to see my biopsy results. I could have moved it back to tomorrow because they already had the earlier biopsy results, but I asked to keep it on Monday instead, so I can hang out with the girls for Halloween. This is not a problem. A few more days will not cause any issues.

I’ll be doing a chemotherapy called ABVD, which is named after the four drugs they’ll be giving me.

A = Doxorubicin Hydrochloride (Adriamycin)
B = Bleomycin
V = Vinblastine Sulfate
D = Dacarbazine

They have fun side effects like making your hair fall out, making your taste buds forget how to taste, sometimes giving you mouth sores, and making you nauseous. And so I also have a collection of anti-nausea drugs called antiemetics. Somewhere in there is a drug that may cause hiccups, too. Life is going to get interesting for the next while.

Because I’m stage 2A with no B symptoms and in good health, I’m going to have four cycles of chemotherapy — which means about four months of treatment. It is the lower range of time for chemo. That’s not so bad. I can handle four months. I could have handled six months, too, but four is better.

And now I have one last weekend to do fun things like Halloween with my family, and eating super tasty foods, before I start chemo. I like them, and they will help me get through all of this.

My lovely family (photo by Jennifer Rodriguez)
My lovely family (photo by Jennifer Rodriguez)

Grasping at some semblance of control

Today I got scared.

I’ve been expecting it for a while, but it still hit me pretty hard. Probably a combination of knowing that chemotherapy will start in a few days and feeling like this week has gone to hell with appointments and visits to doctors offices and the culmination of two months of upheaval from any kind of regular routine.

I went to the cardiologist’s office to get set up with a holter monitor, and for some reason when he told me that I had to bring the recorder back the following day, something in my head snapped. It wasn’t part of my plan for the week. It was taking away from the only vaguely normal day I had planned this week, and making me cut my workday up into slivers.

My hair is short. It will get shorter.
My hair is short. It will get shorter.

I nodded and said I’d bring it back, and internally I could feel myself rebelling against the idea of coming all the way back to the North Shore mid-morning because it wasn’t part of my plan. I’m flexible. These things don’t bug me. But this time it did.

So I went to work, newly outfitted with a bunch of stickies on my chest connected to wires going into a little electronic recording device, and I felt annoyed, off, frustrated. I had trouble focusing on anything, and I felt like this one little thing had pushed me off the edge into an out-of-control spiral. I did not like, not one bit.

In an attempt to regain control, or at least feel like I was, I looked up salons in Vancouver that might take my hair and donate it to a cancer wig place. I found one across the street from my office, so rather than sit at my desk thinking about not knowing what was coming next, I went across and talked to them about getting my hair chopped off before chemo.

It was quiet there; they chopped it off for donation, then gave me a nice short cut. I felt less overwhelmed, but the undercurrent was there. I was scared.

What’s to be scared of, really?

I’m still scared, but I’m not scared of everything I’ve learned about what to expect from chemotherapy. What scares me isn’t what I know. It’s what I don’t know, and what I can’t begin to know until I’ve been through it. I’m scared of not knowing how chemo will feel, and how I’ll react to the drugs.

I was scared of the biopsies in the same way; not knowing how it would feel made the lead-up to all of them harder. Once I was going through it, I could put myself in the right frame of mind to just deal with it. But I’m not there yet with the chemo. Instead, I’m as close to overwhelmed as I’ve been through this process. And of course it’s all happening while I’m recording my heart rate on a holter.

Adam told me, lying in bed tonight when I couldn’t sleep, that I can’t put on a brave face all the time. He’s right, but then again, that’s what I do to get through it. I’m just remarkably good at faking it till I believe it’s true, at which point it becomes true. I assume that’s what everyone does; maybe I’m wrong though.

I asked someone else to come to work tomorrow, pick up the holter test, and bring it back to the doctor’s office on the North Shore, so I can stay at work and have one last nearly sane day before this week goes sideways. It’s these little random things that help keep me stable. People are good, and everyone seems to want to help in some way. Even wanting to help — it helps.

And maybe now that I’ve written this all down, my brain will let me sleep.