How I parent: Treating children with respect

I’m now six years into this parenthood thing. Like most other parents I know, I’m pretty much making it all up as I go. A lot of my parenting choices, however, are based on my experiences as a child, and the philosophies and methods my own parents had. Many of those methods are solid, useful ones — after all, I turned out reasonably okay, all things considered. But there are also of things I’ve chosen specifically to do differently from my own parents.

I am the product of my childhood; of my parents’ beliefs and actions, and of my own experiences as an extremely sensitive child. There are a few specific incidents and situations in my life that shaped me into the kind of parent that I am today.

My mom and stepdad had a difficult relationship. They married when I was a toddler, so he was always a part of my life, and was always my dad, but as I got older their issues became more apparent to me. Between various mental health problems that went largely untreated and the problems they had communicating with each other, I learned a lot about how not to manage a relationship (although early on I made a few of the exact same mistakes, of course).

There were times, when I was a teenager, that they would fight. I can’t remember anymore what the fights were about. I don’t imagine it really matters. What I do remember was the effect that those fights had on me, and the atmosphere of the place I called home.

Sometimes… often, even… my parents’ tactic for resolving fights was to stop talking to each other. Not for an hour. Not for a day. Not even for a week. Sometimes they would refuse to be in the same room as each other for a month or longer. The house would be tense and uncomfortable, full of subtle and unsubtle jabs and attempts to win kids over. Because I was my mother’s daughter by blood, and because my stepdad had suffered through issues with my older sister when she was a teenager, he would include me in his refusal to talk to my mom. So basically, if he was mad at her he was also mad at me. If he wasn’t talking to her, he wouldn’t talk to me.

It was devastating. He was my dad. He had been my dad for as long as I could remember. And I was punished for not being his real daughter. It hurt. So I promised myself that if I ever fought with my partner, the children would not become a target for my anger and frustrations.

Once there happened a month-long, epic, no-one-is-talking-to-each-other battle during my early teen years. I got frustrated, tired, and saddened by the situation, so I took a piece of paper and some pencil crayons and I drew a stop sign. I coloured it in, and I wrote the word ‘please’ underneath the sign, because I was hurting and I just wanted my parents to stop fighting and maybe talk to each other and try to work things out. I left it on the kitchen counter for my dad to find.

The next morning I was the first one up. I found the paper sitting on the counter where I’d left it, flipped upside-down. Written on the back in my dad’s handwriting was this: “Mind your own god-damned business.”

I picked up the paper, tossed it out, went back to the basement to my bedroom, and I cried for a while. I was not emotionally equipped to fix the problems my parents had with each other, and I hadn’t claimed that I could. I just wanted them to stop not fixing them. But I also felt that, after a month or more of people in the house refusing to even be in the same room, it had become my business. They weren’t even trying, and it was affecting my life directly. I felt like that made it my business.

At any rate, it didn’t help. They kept fighting a lot. Eventually, a few years after I moved away from home, they divorced, to no one’s surprise and much to my relief.

None of your business

But I thought often and deeply about my hamfisted attempt to break through and communicate with my dad, and about his response to it. I knew what was going on, and I knew that it was an unhealthy situation that was affecting everyone. But he believed that the fights he and my mom had were not my business — the dancing around subjects, not talking, pretending that none of it had an effect on me or my life since I was just a kid — so I couldn’t possibly understand it. I understood plenty. My teenage years were riddled with depression, although I didn’t have the right language to know that that’s what I was going through.

I thought about his belief for a long time. And I decided that he was wrong.

I still think he was wrong. And that decision became a core belief that I have as a parent myself.

Children are people. They understand what’s happening more than they get credit for. They are affected by the things that go on around them. And they deserve a level of communication about the things that go on around them, and the things that affect their lives. Not talking about serious or important issues does not go unnoticed. Hiding things or pretending everything is normal when it isn’t only creates distrust and frustration.

We explained my cancer to Lyra — we told her what cancer is and that it can kill people. We described what chemotherapy was going to do to me. She came to the hospital when I was getting my chemo treatment and got to see them administer the drugs. She was aware of why I had to go into the hospital for three days when I got sick before Christmas, and came to visit every day.

Her Great Grandmother passed away a few weeks ago, and we talked about it. She doesn’t remember meeting her — the last time she saw her Great Grandmother was when she was three. But we talked about dying, and about family, aging, and Alzheimers, and that her Dad was going to fly to Ontario to help his own Dad and support him in his grief. These things affect her family — they are as much her business as the decisions about whether she is going to take swimming or gymnastics classes.

So if her parents were to have a huge fight that lasted a month or more, yes, I think it would be her god-damned business.

My mother had a different approach. She talked to us about things. She treated me like a person, and was willing to discuss things with me as though I understood. Which, generally, I did, and the times that I didn’t our discussions helped me to. I wasn’t stupid, and youth does not equal disconnect from reality. I appreciate her honesty and willingness to treat me like another human being, and not like a baby that had to be protected and coddled.

In the years since they split up when I was 20, I’ve spoken to my stepdad three or four times, and seen him twice. Maybe I was too much like her. Maybe he never saw me as anything but a child who shouldn’t be involved in the decisions of her elders. I don’t think he forgave her for leaving, and I know he was angry about it for a very long time. The times that I did see him, he made it a point to tell me how much he hated her. I refused to deal with that kind of toxicity in my life, so I stopped trying to see him, and he never made any efforts to reach out to me.

Respect

For me, it’s about respect. I respect my children as people. I will protect them from the things that they should be protected from, but I will not shield them from the dirt and the badness that happens in our own lives. We have open discussions about the challenges we face, on a level that we consider appropriate. They deserve to know what’s happening in the family because they are part of the family and are affected by everything. Even if they’re children, I don’t talk to them like they’re stupid or need to be protected. They can, and should, hear truth from us their parents — because if we are willing to tell them the truth about our lives, then they will learn to feel comfortable telling us the truth about theirs.

And because they are human beings who deserve my respect.

Someday they will be adults, and I hope to have conversations with them about our separate lives. I hope that they will talk to me about their problems, and that they’ll want to hear about the things that happen in my life, good and bad.

At 38 years old, I am not a kid. My mom doesn’t treat me like one, either. If she did, I’d probably get frustrated with the situation and avoid talking to her, because no one, of any age, likes to be talked to as if they’re a dumb kid. We have respect for each other, and our relationship is stronger because of that. When I see people talking to Lyra in simple terms, skirting around issues, I can already see her mentally discounting them, as though she’s categorizing this particular adult as someone who sees her as a little kid, and not someone who respects her as a person. She hates being talked down to.

I don’t blame her. Doesn’t everyone?

Kids
Kids always know when something is up.

Anxiety and the cancer survivor

One year ago I was diagnosed with cancer, and now I’m done treatment (six months ago, actually). I’ve been carrying on with my life, for the most part. But in the last few weeks, my anxiety levels have gone from zero, to mild, to moderate, to sometimes high.

What does your anxiety look like?

Mine feels like a guitar that’s strung too tightly: discordant, out of tune, and ready to snap violently at any moment. It’s a rock in my stomach and a lump in my throat. It’s physical pain when I try to breathe deeply. And it’s waves of sudden fits of irrational rage that stem from the unexpected inability to cope with normal, everyday things like prioritizing my day or deciding what to have for lunch. And it’s not really knowing how to talk about the fact that I’m having anxiety attacks.

So many things have happened this summer that remind me of a year ago.

I went on a multi-family camping trip with my daughters – last year we left Adam behind due to his crippling sunburn, but this year he came along, which was much easier to manage. We had a good time in the woods, even with the extra responsibility of the new puppy in our lives.

kids at the beach
Camping involved swimming and beach lounging. It was good.

Last year, when I took the girls camping on my own, all three of us had a nasty summer cold that culminated in a febrile seizure for Pandra well after we returned from camping, followed by a trip to the doctor’s office — the same trip where my doctor heard my cough, called me back into her office and checked my lymph nodes. And found the first of my tumours.

This year, I again caught a summer cold from Pandra. It’s been a few weeks, but that feeling in the back of my throat still hasn’t gone away — that feeling you get from phlegm and post-nasal drip and gunk that leaves a bad taste in your mouth. That feeling I had for the entire two months before I started chemo, at first because of the cold I had in the summer, and then afterwards because I had a lemon-sized tumour pressing against the back of my esophagus.

I’ve been taking Lyra to Vancouver Aquarium’s Aquacamp for the past few days, because the teacher’s strike means she isn’t able to start grade one, so we’re stuck trying to find other options to keep her engaged. Her summer daycamp was driving her crazy. But she went to Aquacamp last year for a week, right before school started, and it was her favourite thing in the world. Sending her again was an easy (if expensive) decision. I enjoy taking her on the commuter train with me every morning, and picking her up from Stanley Park at the end of the day. It’s a mini adventure that makes my daily commute about four hours long, which is exhausting, and still fun.

But it’s all so much like last summer.

I’m ready for summer to be over

I’ve been looking forward to the end of summer, and for school to start, so that Lyra can see her friends again and get back into learning things and the daily structure that she seems to really thrive on. And so that we aren’t paying so much money into daycare that we can’t afford to do fun things. The teacher’s strike has wrecked that for us, sadly. But while that bothers me, we’ve figured out ways to handle it (by not doing fun things that cost money and sacrificing other things so we can give Lyra something to do that she really enjoys.

But in the past couple of weeks, I’ve been feeling increasingly anxious. It was minor, initially… just some occasional nights when I had trouble falling asleep. It got worse as we got closer to the time when my cancer issues began, although I didn’t initially make the connection. And the camping reminded me of the cold, and then I got a cold and had that pressure on the back of my throat. And now for a couple of weeks I’ve had a tightness in my chest, and I’ve had trouble breathing, and I’ve had moments at work when I’ve had to get out of the office to go for a walk because my anxiety levels were too high for me to function effectively.

I couldn’t place why, for a bit, until I started listening to my brain at night when I couldn’t get to sleep. There have been more of those nights lately. When I took a moment to listen to where my mind wanted to take me, I realized what was happening.

I’m afraid the cancer will come back. That my treatment wasn’t long enough. That it wasn’t totally eradicated and now the lemon behind my esophagus is growing again, pressing against my throat, making it hard to breathe, hard to sing. That the tightness in my chest isn’t because I’m anxious, but because there’s less room than there should be.

When I think about these things, I get afraid. I don’t want to be the kind of special you get to be when you’re a cancer patient. I don’t want that attention again. I don’t want to need chemo again, or to learn that I might not see my kids grow up.

A few days ago it was my ninth wedding anniversary with Adam. I don’t want it to be one of the last we get to celebrate.

It figures that my courage would choose to sell out now

So yes. I’m having some anxiety issues.

And I keep forgetting to breathe properly, because it hurts my chest when I breathe too deeply. Probably because of the anxiety.

I’m due for my next check-in with my oncologist in the next couple of weeks. It’s safe to assume that the cancer is not back, and that I just have a lingering cold, and that everything else is anxiety from all the familiar things going on around me that remind me of when I learned I had cancer. But because it’s not completely ridiculous to think that the treatment didn’t work, or that the cancer came back, I can’t not think it. It’s unlikely, but not impossible. And the possibility is enough to keep me feeling like I’m walking on a rope bridge at the edge of a cliff.

The bridge will probably hold. But what if it doesn’t?

I’m afraid of heights.

Adulthood: An exercise in unfairness

This last year has been unfairly difficult. At a time when my six-year-old daughter is obsessed with fairness, or rather, the unfairness of the world, I’ve found it harder than usual to come to terms with the same thing myself, lately.

Things aren’t fair. We all learn this at some point, hopefully sooner rather than later in our lives, so that we can also learn how to deal with that fact and move on with life in a productive and happy way. Dwelling on unfairness into your adulthood just sets you up for a life of disappointment and frustration. Life is not fair.

It's just not fair!
It’s just not fair!

Sometimes it’s pretty much impossible for me not to list all the unfair things that have happened in the last year, even though I know it does me no good. Right off the top, of course, there’s cancer – also known as life’s big Fuck You to fairness. No one can tell me why I got cancer. Every so often, when I can’t sleep at night, my brain starts listing all the possible things that might have caused it, like childhood exposure to contaminants, or adulthood exposure to contaminants, or maybe I dyed my hair one too many times, or maybe I ate too many pesticides, and the list goes on and on and on. There is no smoking gun, but I somehow got cancer, and it wasn’t fair. And so far I have beaten cancer, which, of course, also isn’t fair, if you happen to be someone else who isn’t as lucky as me.

And sometimes I think about how my kids are growing up without much contact with our extended families, and without that family tribe that I see around me in other people’s families, and it makes me sad how that’s unfair for them. Or I selfishly wish I could just leave the kids with their grandparents for a night so I can have a tiny one- or two-night vacation with my husband wherein we can sleep and recharge and maybe ride bikes together, because that’s one of those things that only grandparents can do… but no. Not an option for us. Difficult year or not, we are not able to recharge without asking far more of our friends than we are willing to. I want to be six and stamp my feet and slam a door and yell about the unfairness of it all. I try not to.

Yes, I would like to own my home…

Last year we nearly decided to buy a townhouse. We shopped, we looked at places, we even put in an offer on a place, but when we sat down to go over the actual monthly costs of home ownership over renting, when considering expenses like the depressingly large amount of money we spend on daycare, we realized that we could not afford it.

Between us Adam and I make what could be considered a very reasonable income if we lived almost anywhere else in the country. The kind of income that, on paper, means we are perfectly capable of home ownership. But due to a combination of unfair things, like the cost of homes in the Metro Vancouver area (the perfect 3-bedroom townhouse for our family is listed at around $400,000) and the extremely large chunk of money we pay for childcare, it’s out of the question, at least until daycare is no longer such an expense.

And here’s the (unfair) kicker: when daycare is no longer an expense, there will be a brand new skytrain in our neighbourhood, which will effectively drive the housing prices of our current area, the one we want very much to stay in, outside of a reasonable price range. It also means that buying now would be a good investment, because the skytrain is going to drive prices up. But we can’t. At least, not and be able to continue to do fun things like eat food..

Most days I am serene and calm and have come to terms with that. Some days I am just depressed about it.

But the most challenging and unfair thing I’ve had to deal with in the last year has been completely unexpected, and unfair in ways I never could have imagined.

Relationships – They aren’t fair

It’s a part of the promise you make in any serious relationship to take care of each other, even (and especially) when one of you is sick. We certainly had to call on that promise last year when I was going through chemo. As rock-solid as I was mentally and emotionally about the whole thing, I just wasn’t physically capable of a lot of things, and Adam had to step up and take over with much of the day-to-day running of our house. What had been a partnership tilted in one direction for a while. It wasn’t fair, but that’s what it was.

And then, sometime in March, I started to feel human again. I was finished chemotherapy. The effects were starting to disappear and I could feel my energy slowly coming back, along with a new sense of ownership over my life. I was so happy to be returning to normal, and the entire cancer experience had me actively evaluating my life down to the tiniest detail: Is this worth doing? If yes, then why not just go ahead and do it? If no, then abolish it completely. My willingness to commit to things I wanted to do had skyrocketed, and I wanted more than anything to get out in the world and DO ALL THE THINGS.

While all this was happening, Adam was going through unexplained, undiagnosed, mystery abdominal pain. It left him often incapacitated, exhausted, and unable to function at a normal level. There were many nights when I’d come home from work and send him away to lie down while I handled kids and dinner. There were weekends that we stayed mostly close to home and made no plans because we never knew if he’d feel up to doing anything (and usually he didn’t).

Chronic pain had taken over his life, and the fact that doctor after doctor couldn’t tell him what was wrong pushed him over the edge into some bouts of anxiety that just made everything worse. He went through the fear of cancer, gallstones, kidney stones, heart problems, ulcers, digestive issues, and every other abdominal issue he, or the doctors, could come up with.

It started in January, before I was even done chemo. It continued on into February, and then March. By April, I was starting to feel like I was at about 80% of my former energy levels, and he was in too much pain to function as a partner for a good portion of the time. We had effectively switched places on the see-saw of relationship balance: I was doing my best to keep everything together, taking on more work at home and with the girls while taking care of him. None of it was fair.

By May and June he wasn’t doing any better, and doctors still told him that they didn’t know what was wrong with him. He wasn’t happy being the mystery abdominal pain patient. By that point, though, he had at least come to terms with there not being something life-threatening wrong with him, and he wasn’t going to emergency every few weeks. But he was still in pain, and it was still giving him a lot of anxiety, and making him exhausted almost all the time.

I was still holding the fort, and still feeling more driven to get out and do things. I managed it okay most of the time, but sometimes the unfairness of it all came back and hit me hard, and I broke down. It happened more than once, and it made life hard. All the while I just wanted to get on with living, and I felt like I couldn’t because I was being held back, taking care of someone who should have been living it with me.

I can see, now, something that I’ve never really been able to see before. I always took for granted that of course we would take care of each other if we were sick. Of course we would. Because we love each other and that’s what you do. And when I was going through chemo last year, Adam took care of me. And when he was hit with chronic pain issues, I took care of him. Unfairly, his chronic pain has been an ongoing problem for longer than my chemo was.

I can’t speak for Adam on this, but what I realized in the last few months, while trying to keep everything together and feeling so keenly how imbalanced we were, is that this is much more difficult than you ever expect it to be. Of course we take care of each other. But when the imbalance goes on for a long time, you start to wonder how long you can actually do it. When you don’t have other family around to help you out, you wonder how people manage. And then that corner of your brain that likes to throw intrusive thoughts at you (you know, the one that screams inside your head brutally inappropriate statements that should never be heard by any human being and make you ashamed that you even thought them) for just a moment breaks through and tries to suggest that everything would be easier if you had fewer variables in your life. And by variables it means people. And then you beat it into submission for even suggesting that you’d think that, because no, you will not be abandoning anyone who needs you, dammit! Even writing about thinking thoughts like that is difficult. I don’t want to admit to that sort of self-perceived weakness…

But now I get it when people have reached that point, when they’ve had too much unfairness, when the imbalance has gone on for so long that the intrusive thoughts aren’t intrusive anymore. And then they have to leave, for their own sake. Where I used to think, “how could anyone leave someone they love when they need them so much?” I now understand. I’ve only had the smallest taste of that feeling of overwhelming imbalance, and I know that it will end, and that there will be more times in the future when Adam takes care of me, and when I take care of him. Relationships are not static. Sometimes, though, when there’s no end in sight, I can understand why sometimes people have to leave. I get it.

I can see the end of the imbalance now. He’s been feeling better, mostly, for the past month. They have ruled out all the major abdominal problems that could have been the cause, and are fairly convinced that it’s probably muscular, in the abdominal wall, and exacerbated by stress. Of which he’s had NONE in the last year, am I right? And his bouts of anxiety have lessened, although it’s certainly been a good lesson in the impact anxiety issues have on individuals and their close family members. But we’re coming back towards the centre, when we both contribute in different but mostly equal ways to keeping our family running.

I keep thinking that there will be some kind of marker, a turning point, something I can look at and say with surety, “This is the end of our year of suck.” This year hasn’t been fair. I’m ready to be done with it. But maybe instead of a specific point in time where the sucking ends, it will just kind of fizzle out and our lives will be normal, happy, and uneventful for a little while.

In an unfair world, that’s the most I can ask for.

The Cancer Survivor’s Club

Being a cancer survivor changes you. Maybe it’s the realization of your mortality. Maybe it’s living through the treatment they use to cure you and all the nasty side-effects that come along with it. Maybe it’s the shift in perspective when you’re done treatment and they (hopefully) tell you that, for now and possibly forever, you are cancer-free. It could be all of these things, and others that I’m not even thinking of.

Jennylee
I have a lot to think about sometimes. And I have hair again.

For the moment I am cancer-free. I am a cancer survivor. It’s a term I’ve had a lot of trouble claiming. When I meet other cancer survivors, they immediately own the words as they connect with you, “I’m a survivor too.” And I’m learning the language that goes along with it. During chemo and for the first few months after it, when someone would tell me that they were a survivor, I never knew how to respond, or what to say. I didn’t know how to handle that connection, the unspoken community that exists between cancer survivors. It made me uncomfortable.

After a while, though, I learned to accept the community, and not feel like I was an interloper in it somehow. I actually had cancer. It sucked, because cancer always sucks. Other survivors aren’t judging me based on which one I had, or what stage I was at, or how long I did chemo, or whether I had surgery. They don’t ask or seem to care about those things. My sense of being an imposter was internalized.

There’s always the question, or the declaration, of the amount of time one has been cancer-free. “It’s been eight years,” a survivor told me at the end of the first day of my Ride to Conquer Cancer. And because that question is always the first one a survivor asks, I knew to reply, “It’s been four months since I finished chemo.” It’s part of the journey and part of that connection — one you can really only share with other cancer survivors. They know.

On the other side of things, I’m still not certain how to respond to people who tell me about their friend/family member who has cancer, though. I can express my sympathy, and tell them how sorry I am to hear that someone they care about is going through it, but I can’t find the right words — if such words even exist — to deflect an awkward, sad silence. It would be easier to talk to the individual themselves than the one on the outside. Not because I want to exclude them; I don’t. I just have a better idea of what I could say to someone going through a similar experience to mine than to someone who has to watch it happen. I didn’t have to watch cancer happen to someone I love. I had to live it. It’s different.

It’s an exclusive club. Watching someone go through it, I think, is its own exclusive club. I wish no one had to be a part of either one.

Life after cancer: Trying to find a balance

It has been just over two months since my last chemo session. Although Adam has has unexplained abdominal pain for three months now, I’ve been doing my best to start fitting some normal activities back into my life. I took two good, long road bike rides to kick off my training for the BC Ride to Conquer Cancer that I’m doing in June — one on the weekend, 32km or so around North Vancouver, East Van, and Stanley Park, and another on Tuesday, riding home from work in Gastown to Port Moody, which is around 25km. This week I had my first-ever actual guitar lesson, since I’ve reached a point in my playing where I would like to improve my technique (or possibly even learn some). My brain is starting to feel like it’s firing on all cylinders, finally, after months of a forgetful haze where I felt like every thought was being dredged through molasses.

The clarity in my mind has been a welcome change, especially with regards to work. I started a new job a month before I was diagnosed with Hodgkin’s Lymphoma. It was another month before I started treatment. Instead of going through the usual process of learning my new role, picking up new skills needed for the job, learning internal processes, and figuring out where I fit in the grand scheme of the organization, I got distracted by things like confirming a diagnosis, going through test after test, getting a treatment plan, unexpectedly weaning a toddler earlier than planned, and actually starting chemotherapy. It was difficult.

My memory is muddy, what’s this river that I’m in?

I kept on working as much as I could through the chemotherapy experience because it gave me some focus that wasn’t the cancer, or how terrible the treatments made me feel. Looking back now, with a clear head and a different perspective on everything, is a strange thing for me. Instead of that six months of figuring out where I fit, I’ve found that my first six months at work are a haze. I feel like I’m effectively starting at this position now instead of last August.

This week we had a retrospective discussion about a project that I worked on over the winter (though not in a principal role) and I couldn’t remember what I did. I know there were things that I did to support the project, and I remember being involved in it, but it’s like there’s a hole in my memory — a gap where the details should be. Looking back on that with a clear head it’s become obvious that the entire six months of diagnosis, tests, and treatment are a muddled haze of feeling physically awful, incapable, and forgetful. It’s frustrating to have a shroud over my memories.

Once again I feel incredibly lucky to be working with the co-workers and organization that I am, because they can’t have known how useless I would be during treatment, but they put up with me anyway. They gave me things to do, they respected the fact that I wasn’t at 100%, and they gave me the room I needed to get better without making me feel like I was a burden. And they barely knew me; I never had a chance to really prove my value before this all began.

Now that I’ve started to feel more like a functional human being, my lack of capacity over the past six months has started to bother me. I feel like I actually just started this job a couple of weeks ago, and my lack of real contributions up to this point had me feeling a bit depressed and anxious over the last few weeks. It’s frustrating, this feeling that I’m so far behind where I should really be after eight months of a job. I have to remind myself that six months of that time — the six months I normally reserve for learning and settling in to any new job — were commandered by captain cancer. I’m back at square one, starting fresh and new, and trying to find my place, to fit into the appropriate gaps and figure out where I can contribute the most with my skills and strengths. I’m finding it a challenge, though, and have had to fight a bit of anxiety/depression over it.

I didn’t expect that the experiences of my treatment and its side effects, like the mental fog I had the entire time I was in chemo, would only be accessible as memories through a translucent curtain. The memories are there. The detail is not. I’m glad I wrote about it all, because otherwise so much of it would have been lost. I can’t entirely recall how I felt emotionally, although I have body memories, like the drugs burning my veins, and the thick headed feeling I got from the extra saline they pumped into me before the port was installed, and that queasy feeling in the back of my throat that was my constant companion for months, and how the chemo side-effect drugs made me shaky. The physical memories may be more clear than the experiential ones.

But moving on to some random thoughts…

Jennylee and family
We’re getting on with our lives as best we can.

By some coincidence, although it does represent my tastes, for my three PET scans I chose three Canadian bands to listen to while the radioactive dye made its way through me: Delerium, Barenaked Ladies, and the Tragically Hip. This is a random detail that amuses me and that I want to remember. I couldn’t tell you why, or why I need to write it down here; I think I just want to make sure I don’t forget.

Today I started to wonder a bit about blood and organ donation: can I still donate blood or organs when I’ve had cancer? After doing a bit of research I found that, for some blood cancers (like Lymphoma, which I had) they don’t allow you to donate, at least not in some countries. I couldn’t find an absolute rule for Canadian blood donors, however. Either way, in Canada they do want you to be at least five years in remission before you donate blood.

As for organs; well, I couldn’t find much on that at all, except that maybe you could donate organs but maybe not. I couldn’t narrow down the exact cases for either side.

This makes me strangely sad. The idea of donating blood is currently a disturbing one, just because the physical memory of IVs and such make me queasy and uncomfortable and makes my arms feel a bit sore even though they’re not. However, I wouldn’t rule it out in the long term just for that reason. For as long as I can remember, though, I’ve had an organ donor card or been registered for donation. The knowledge that pieces of me could be used to save another person has been comforting to me. It didn’t occur to me until today that that could be taken away because of cancer.

But at least I can still happily donate my body to science when I’m done with it. Dear family and friends; in case I haven’t mentioned it, please donate my body to science, should the opportunity arise and I don’t need it anymore. I mean it.

Otherwise in our lives, Adam’s been sick. We can’t really get back to a normal life until he’s not in pain anymore. That likely won’t happen until they figure out what’s wrong with him and it’s kind of exhausting for both of us. But in the meantime we do the best we can.

After chemotherapy ends: Where’s the kaboom?

Chemotherapy has been over for a month now. I’m in a strange post-treatment world. Chemo ended, I’m effectively in remission (complete response, I think?) and there is no fanfare or acknowledgement of it other than within my little family. The oncologist will see me in a few months to see how I’m doing. I had my post-chemo PET scan on Tuesday, which was uneventful. There’s nothing else to report, and I’m supposed to go back to life as normal.

But life isn’t playing fair, I guess. Not that I believe life ever plays fair.

This week has been particularly difficult, and I have struggled with writing about it. I’m not sure why, since writing about things helps me deal with them. But that’s how it is.

I’m still not fully recovered post-chemo, even though my last treatment was February 11. I am still more tired than I normally would be, although I feel better as time goes on. I knew this was how it would go, though. It might take a while until I feel mostly normal again. I’m just not there yet.

I’ve had a head cold since about Tuesday. Mildly irritating, but not a big deal. At least I can treat it and not be worried about getting a fever. It’s just a normal, annoying, run-of-the-mill cold. Lyra and Pandra both have the same one. Not that it’s really slowing them down at all.

Adam and Pandra
Adam and Pandra cuddling on the couch, with boots. Because that’s how she rolls.

Adam has been suffering from moderate to severe abdominal pain nonstop for the past week (at minimum – he’s had some kind of undiagnosable abdominal pain since January. Yay.) As of now, he’s been to Emergency a few times, talked to our doctor (who seems to think it’s in his head, which is oh so helpful), talked to another doctor, and has finally been referred to a general surgeon to discuss more diagnosing options. It might be a gall bladder issue. It could be a severe ulcer of some sort. Or maybe it’s both. Perhaps it’s neither, but instead something else that we haven’t thought of or considered. The Internet likes to tell us it’s Cancer (thanks, Internet, but we didn’t really need your opinion… you think everything is Cancer).

What we do know is that he’s in enough pain that he’s afraid to eat and has lost around 25lbs in two months, he doesn’t seem to be able to control it with diet, activity, or inactivity, and that it seems to come in waves of attacks, taking him from mild to moderate to severe pain with unknown triggers. If it’s gall bladder, it could be fatty foods. If it’s ulcer, it could be stomach acid. But the patterns aren’t settling into predictability, so it’s frustrating.

I worked from home on Wednesday to take care of Adam. Then he had a pretty severe attack the next day, which meant neither of us slept much on Thursday night, and I had a massive fail getting out the door with the girls on Friday morning, so I missed my train and was miserably tired. I stayed home that day too, but to rest; it helped some.

I also discovered, on Friday morning, that someone had rifled through the glove box and console of our car overnight. They hadn’t stolen anything though. Apparently CDs aren’t worth stealing anymore. Even if it was an opportunistic thing (they didn’t break a window, so it’s fair to say we forgot to lock the car that night) it was a bit upsetting. Good thing there’s nothing of value in the car, anyway, and they didn’t have tools or time/incentive to pull our nice-ish stereo out of the car.

Of course, with Adam in extreme pain for a good part of the week, everything else has become more complicated. It’s demoralizing to watch him and not be able to fix it, which I’m sure he understands after having me in chemo for months. On top of that, I have to be ready to drop everything and take him to the hospital at any moment, which means trying to secure someone to watch the girls if it comes to that. Finding short-notice childcare is a challenge when most of our local friends have kids of their own, or, you know, lives, like normal people. My friends are awesome. I have had to lean on them too much, though.

I am so very tired of asking friends to be on-call in case we need help. I’m tired of us needing so much help. I’m tired of being too tired to fully commit to anything I do. I’m too tired to proof-read.

And all the tiredness and the frustration and the needing support from friends and the illness and the inability to commit to anything is wearing me a bit thin. I’ve been kind of wavering between exhausted, extremely grumpy, and vaguely sad for the last week. I remember the vague sadness, and that dull tightness in my chest that makes me feel like breathing is harder than it should be. If I don’t take care of myself, it turns into something else. And while it’s been a long time since I’ve been depressed, I can recognize some of my own tells. I’m not — don’t panic or anything — but if I don’t pay attention, I might end up there. So I’m trying to pay attention.

Apparently having cancer and going through chemo can’t make a dent in me (or my hair, which is coming back in force), but being hit with a bunch of new issues right when everything is supposed to get better because ‘yay cancer-free’ is enough to make me just a little bit broken. I haven’t even had time to lament the fact that I haven’t felt any internal fanfare for my not having cancer anymore. Where’s the kaboom? There was supposed to be an earth-shattering kaboom.

I wish I believed in karma enough to think that, after this last year of mostly crappy things (I checked; it’s been twelve months of predominantly crappy things with some nice things peppered amongst them), good things of equivalent value were due to happen to us. Sadly, I don’t. Not that I don’t think that things will get better; I know they will. But neither do I think we’re owed anything by the universe. Stupid universe, quit making me grumpy.

Bravery in the face of Cancer

“You’re so brave!”

“I don’t think I could ever be as brave as you are if I was dealing with cancer…”

“You’re the bravest person I know.”

“I know that I would fall apart if I was you. How do you do it?”

I’ve heard variations on this theme ever since I was diagnosed with cancer — from friends, acquaintances, and my husband. My only response was to shrug and reply with something along the lines of, “I just do what has to be done. Anyone else would probably do the same…” and mostly I think that’s true.

No one knows how they’re going to react if they’re hit with something difficult and life-changing like cancer. Early last year I remember specifically being struck, out of the blue, with a huge panic attack about exactly that. It was spring, I was spending parental leave with Lyra and Pandra, and one day I had the most unsettling of intrusive thoughts: “What if I got cancer right now?”

It was terrifying. I was devastated by the idea that I might not see my girls grow up. I was shaken by a visceral fear of going through chemotherapy, of not knowing what would happen. And this all happened six months before I was even diagnosed. I had no symptoms. There was no reason for me to think about cancer at all. The feeling stuck with me for at least a week. And I was absolutely certain that if it happened to me I’d be a complete mess for that week.

Adam has been sick for the last month or so. He’s had a lot of abdominal pain, and spent five or six hours in Emergency care at our local hospital ruling out worst-case-scenarios like appendicitis or unknown tumors. Upon returning home, he looked at me — just going through life and dealing with the cancer thing and the chemo thing and the parenting thing — and somehow managing to not have a breakdown since this all started in September. And he had a bit of a breakdown, because being sick and in pain and frustrated about not knowing what’s wrong with you… well, it’s really hard to handle.

When Adam asked me how I do it, how I stay so calm and have held myself together throughout this experience, I paused and thought longer about the question, rather than giving my usual response of shrugging it off. I forced myself to think longer and harder about the answer, because when your husband is the one asking you, maybe there’s more to it than just ‘you do what you have to do.’

Just like Girl Guides or The Lion King: Be Prepared

So here’s my secret. My mind is always running through worst-case scenarios. I mean it — always. When I walk down the street I imagine cars careening off the road and up onto the sidewalk towards me. And I plan out what I would do.

When I’m driving I constantly check everything around me and do my best to stay aware of the cars I’m sharing the road with, so I can figure out what to do should one of them intrude on my space. And I consider all options for getting from where I am to where I need to be, and plan not only an initial best route to my destination, but a series of alternate routes if the traffic gets bad, or if there’s unexpected construction, or if I just decide part-way through the trip that it’ll be more efficient to take a different road.

I imagine the commuter train I’m on derailing and my mind rushes through options to survive with as little damage to myself as possible.

I entertain terrible, heartbreaking thoughts of someone trying to grab my five-year-old daughter, or my toddler running off towards a busy road, or innumerable other situations that end in disaster, and I do everything I can think of to keep them from happening.

This is not something I do occasionally. This is my mind, spinning and planning and imagining the. Worst. Possible. Thing. All the time. One might think that it would make me stressed and on edge all the time, this constant weighing of options and subconsciously thinking about what can go wrong, but it doesn’t. Instead, it keeps me calm. Exploring all the possibilities — even if they’re terrible — and making imaginary plans to deal with them keeps me grounded.

So if I can imagine the worst possible thing and decide how to deal with it, anything less is manageable. And if it’s all manageable, if there’s a plan in my head for the worst, then there’s nothing to be afraid of… no reason to panic.

And as for the cancer, well, I took the weapons that science has given us into battle against it. And if the first treatment plan didn’t work, then there are other treatments. One step at a time, with one solution to the problem at hand, and if that doesn’t work move on to the next solution until it does.

Worrying about the possibilities without planning how to deal with them confuses me. It’s not that I don’t worry — I do. I worry, and then I follow through on the scenario in my head, and I discover the best and worst outcomes. I decide how I’ll react to the worst thing. Once I’ve got that figured out, I let the worry and fear go, and keep moving forward.

If that road is closed, or if the traffic gets bad, or if there are too many school zones making me run late, then I reassess my chosen route and find another way. Worry and panic don’t come into play anymore, because I’ve already decided what the worst is and how I’d deal with it.

I still don’t think I’m stronger than anyone else. I’m just painfully, brutally logical. And my mind is always, always spinning.

After chemo: two and a half weeks

This is the first time since October that I haven’t had to go in for a chemotherapy treatment on the two-week mark. I had a sinus infection for a few weeks, but with the help of antibiotics it’s gone now. My taste buds are returning. The chemo brain is receding some, so the cloudiness I’ve been thinking through is finally starting to clear. My hair, which never stopped growing, but did thin out quite a lot, is growing again. I had a labyrinth shaved into it last week to celebrate not having to do chemo anymore, but it’s already growing in… I haven’t decided what to do next with my hair.

I’ve been fatigued, but that’s to be expected. I still have more energy than I did during chemo, so I’ve been able to take on more parenting and cleaning and normal, everyday human responsibilities than I have in a long time. But I’m not at 100% yet. The end of chemo has felt like a non-event. It has happened, and life goes on.

hair-tat-before

hair-tat-after

I thought chemo would get easier as time went by. I thought wrong.

They changed my chemo appointment and I didn’t notice on my sheet, because I’ve become accustomed to it always falling on a Monday. This morning I went to the hospital as usual to get chemo, and they sent me back home. Naturally it was one of the few times Adam had taken the day off to spend with me… It was both a relief and frustrating.

Ongoing chemotherapy: It doesn’t get easier

After my first chemotherapy session, I thought that it would get easier to handle. I believed that the combination of knowing what to expect from a chemo session, actively working towards curing my cancer, and counting down the number of sessions before I’m done. All of this makes sense on a rational and logical level. But even I can’t be rational and logical all the time…

This keeps me going.
This keeps me going.

I’ve found that I start feeling anxious towards the end of my second week after chemo. As I start to feel more normal, my  energy levels come back up, and my brain starts working effectively again, a vague anxiety starts lurking in the back of my mind. I make an effort to ignore it as much as I can, but it creeps in nonetheless. Every time I have a few quiet minutes to myself, or when I’m lying awake in bed, or when I notice just how close to normal I’m feeling, I can feel the undercurrent of anxiety building up.

And the further into chemo I go, the worse that feeling gets. After a while it builds from anxiety into dread — I start actively thinking about how much I don’t want to go to chemo and how it’s going to make me feel crappy and tired and messed up again. And I start to think about how awful it would be to have to go through this whole process again (and have it be worse than it has been for me so far), or to watch someone close to me go through it.

In other words, I’m starting to feel the long-term psychological impacts of being a cancer patient. They are subtle, and you carry them with you, unseen. Lying in bed last night, I tried explaining it to Adam. He reminded me of the positives (only three sessions left, things are going well, I’m getting better), trying to reassure me as you do when someone is feeling anxious, but it’s more complicated than that.

I’m not just afraid of tomorrow’s chemo session. I know what that’s about, I know what’s coming. I don’t like how the chemo makes me feel stupid, and how it clouds my brain and makes me forget words, and the way I get shaky and tired, oh so very tired. But it’s the devil I know, and it’s not going to kill me — the cancer, on the other hand, would. And I expect that I will be cured when treatment is done, or if not, with the next course of treatment. My doctor’s confidence is high, and I believe her. She doesn’t stand for bullshit.

What I’m afraid of is the unknowable future. What if I get another cancer someday down the line? What if I have to go through a harsher treatment, or it’s something far more serious? What if my kids or husband are diagnosed? These things could all happen.

I don’t live my life expecting cancer around every corner (surprise!), but tied into the anxiety I get for a few days before my chemo session are these flash-panic-inducing, irrational fears. And while I am aware that if any of this happens then we will deal with it, that doesn’t make the tightness in my chest go away, and it doesn’t make the unsettled dreams that come when I finally do sleep the night before chemo any easier to handle.

But the panic passes when I remember to breathe. I go in for chemo and it’s not so bad, even if it sucks. People close to me count down to the final treatment on my behalf, since I don’t keep track. My life goes in two-week cycles, from chemo session to chemo session, over the hill and back down the other side. When the panic is gone, the anxiety remains, colouring my life in irritating ways — like making me think that friends are avoiding me (sometimes they are, just so they don’t make me sick), or that I’m completely incompetent at my job, or that no one wants to invite me to anything — amplifying my social and self-confidence anxieties on top of the cancer fears, just for giggles.

I like making lists

I’ve started keeping a list of the things I want to do when I’m done with my cancer treatment, to help me look ahead with a sense of purpose. While I can’t wait until I feel normal all the time instead of sick, stupid, and exhausted, that hasn’t been enough lately to keep me going. So far the things on the list are fairly mundane — record some music, take some guitar lessons, take a course in something I’m interested in (not sure how to afford that yet, or what to take), go biking, go running, get a dog, go to Disneyworld (when we’re not broke) — but I’m trying to think of more. I need to think of more.

My friend Steve, who went through chemo a couple of years ago for Non-hodgkins Lymphoma, sometimes talks about how the experience of the cancer patient really makes you feel like you need to leave a legacy. His legacy is mountain biking trails. Right now, mine is Lyra and Pandra. I don’t want to miss them growing up — the thought is physically painful. My list, though, isn’t about legacy. It’s about living. I don’t think that I wasn’t enjoying my life or living happily before cancer — because I was. But I was also putting some things off, or not giving them the attention I really meant to, out of laziness or lack of funds or variable priorities. So now when I think of the things I want to do during chemo but can’t for whatever reason, it goes on the list. When I remember to add it.

What’s on your list?

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.