Life goes on, but it’s not the same

I’ve got the “I beat cancer” blues.

Am I still a mountain biker when I haven’t been on my bike in years? Am I a runner when I haven’t gone running in months? Am I a writer when I’m not actively writing? Am I a musician when I haven’t been playing my guitar? Do I have value to anyone when I’m not doing something valuable?

Two years ago I beat* cancer.
*which just means it hasn’t yet come back in two years, and it may never come back, but then again it could.

I think there’s a time, just after cancer has been beaten*, when survivors feel more alive and connected than they remember feeling before cancer. It’s an incredible experience. You have no patience or time for bullshit, and you act on things that are important to you—even little things—right away because you know how close you came to having no time left. There is no should when it comes to doing – only will and won’t. You feel overwhelming impatience for meaningless or frivolous delays. If something is worth doing then it’s worth doing it right now—or at least taking the first difficult steps—and it’s exciting.

My husband and I had talked for years about our next pet being a dog. When I was done with cancer, I pushed hard to get that dog. I had been thinking for ages that I should improve my guitar playing through lessons, so I went out and found a teacher. Everything that seemed important to me — from taking a course to riding my bike 200 miles in a weekend to finding a way to get into community theatre to just getting outside — I was ready to act on each and every item in the moment it occurred to me.

My productivity was off the charts… but only for a little while.

As my strength came back and the chemotherapy drugs wore off, I felt unstoppable. And then life started creeping back in.

It’s hard not to believe that once your cancer is in complete remission that there’s nothing you can’t overcome. When life starts throwing exciting challenges (stressful situations) at you, you’re confident that you’ll breeze through it all.

The adorably troublesome and neighbour-irritating new puppy gets pneumonia and nearly dies on the same day that my husband’s grandmother across the country passes away suddenly? That’s awful. But the expensive emergency vet trip saves the dog, and the expensive private training sessions make it less likely that our neighbours will hate us for the dog, and we’re grateful we took our daughters to visit Bubbie a few months earlier. We can recover from a little credit card debt. And it’s nice having a puppy.

My husband starts having seemingly undiagnosable abdominal pain? Okay, well we survived cancer, so we can get through this and figure it out and move on. No big deal. And when it turns out to be a pulled abdominal muscle gone rogue with PTSD, we breath a sigh of (painful) relief and laugh nervously about the strange post-cancer side effects we never expected.

Our ground-level apartment floods, leaving us homeless in the most expensive housing region of the country with possibly the lowest vacancy rates? I guess we can take our family of four + puppy and sleep in our friends’ basements and guest rooms, and stay at hotels and short-term holiday rentals, and try to buy a townhouse in a seller’s market that’s just gone from barely affordable for us to completely unaffordable. For six months.

And then I didn’t feel unstoppable anymore.

I didn’t float through problems secure in the feeling that everything was going to be okay. Everything consistently wasn’t okay. I wasn’t okay.

And now that things are settled — the dog is healthy, the family is healthy, we’ve uprooted ourselves and settled down in a new town in a house of our own, and everything is feeling deliciously normal — I’m still not okay.

I’m supposed to be okay by now.

I held it together for two years of crises. Nobody — myself included — knows exactly how. That’s okay — how doesn’t matter.

What matters is that I’m not holding it together anymore and I feel like I should be. My life is as stable as I could ever hope it would be. And I miss that feeling I had when I first beat cancer — that I could do everything and I could start right now, so I did.

Some of that feeling has stayed — specifically, the part where I want things to start or change or be the way I imagine they should be right now. I’m in a new town, why don’t I already have all sorts of new friends and social engagements and volunteer work? Why am I not already involved in everything? I want it to happen right now. I have no patience for pointless delays like small talk and trying to meet people in my usual awkward ways. Not that I have skills to do it without the awkward.

But the other side of it, the side where I feel alive and unstoppable, where I’m excited about every new idea I have and the new friendships I’m about to discover… that part has disappeared. More than disappeared, in fact. It’s gone into negative space, and it’s feeding the imposter syndrome I’ve felt for as long as I can remember — about my career, about my hobbies and interests, about being not a real cancer survivor because I didn’t have it as bad as a lot of other people. I don’t feel like I’m a real anything, so I don’t want to do anything.

The combination of stress whiplash and the jarring feeling that my ambitions and motivations no longer exist make me suspect one thing. These are the hardest words to say aloud, the hardest ones to even write down on a page:

I am depressed.

I shouldn’t be depressed, because everything is okay now. I don’t have cancer anymore, and it’s been two years since I did. I have a home and a great relationship and family. I have a job with a great team who have supported me through every hurdle I’ve faced in the last couple of years. I am not allowed to be depressed because there is no valid reason to be depressed. My life doesn’t suck enough for me to be depressed. I still play with my kids and laugh with friends and make terrible jokes and sarcastic comments. On the surface I’m perfectly fine.

I know better. I’ve walked this path before, though it’s been a while. I remember how it felt the last time I went through this. It felt exactly like I feel right now.

I’ve talked to friends who also survived cancer; they say they went through that period of feeling alive and motivated and excited about everything, and that it went away, and that they miss it now that things are settled and normal. I haven’t asked them if they, too, struggled with feeling worthless, pointless, fraudulent. I haven’t asked if they got depressed, because that would be telling, now wouldn’t it?

Am I still a biker, writer, runner, musician? Am I valuable? I don’t feel like I am when I can barely find the motivation to sit on my couch and play my video games once I’ve taken care of all the standard mom responsibilities.

I’m terrified of telling anyone my suspicions — that I’m actually depressed — because they’ll look at my life and wonder how that’s possible, when all the bad things are over — I won. They won’t believe me. They won’t know how to help. I certainly don’t, and I’ve been depressed before.

Do many cancer survivors have this much trouble resetting themselves into normalcy?

I don’t know the answers. What I have done is started seeing a therapist regularly. Unraveling the weave that has made me who I am means walking through a lot of things that I’ve been skirting around for the last twenty years. I’ll see you on the other side.

A Performance Review for 2015

Hello, 2016. Please come in and take a seat. Here’s a cup of coffee; I’ll just be with you in a moment. I have something I need to wrap up before we can get started.

Twenty fifteen, we got off to a bit of a quiet start, and then things really went downhill. Let’s just work through your performance review together, and maybe we can both learn something from the experience, okay?

The thing is, 2015, you came highly recommended by so many people. I was told that you were going to be fantastic. I had officially beaten cancer in 2014 and was full of thoughts and ideas and plans for things I wanted to accomplish. I was playing my guitar and thinking about recording some songs, and was beginning to pull together a vague idea for a short story–nay, a novel! You were going to be so great, 2015.

But then, 2015, you decided to outdo yourself in the area of Velociraptor Incidents. Maybe you were trying to be an overachiever, like your friend 2013 and her cancer diagnosis, or maybe 2014 and her PTSD/anxiety assault on my husband while he tried to recover from 2013’s velociraptor incidents. I’m sorry to let you know this, but Velociraptor Incidents are to be avoided whenever possible–they are the opposite of what we want to see as progress on your Goals and Objectives.

Let’s just take a quick look at what we set out as Goals and Objectives for you, 2015, and review how well you did on them.

  1. Give me a place to do more music: Okay, we did that for the first few months of the year, and it was fantastic. But you really dropped the ball during your second half, 2015.
  2. Give me space to write more: Same as above.
  3. Help me get back into running: we’re both responsible for this one faltering, it’s true, but I can’t help but place a lot of the responsibility on your shoulders, 2015. You really made things extra challenging for me.
  4. Time management: You were particularly bad with this one, 2015.
  5. Taking initiative: Maybe we should have been more clear at the outset what kind of initiative is good to take, and what is not good. I’m not pleased with your performance there.

I’m sure you know what w’re going to chat about next, my dear 2015. That’s right: Your Velociraptor Incident. The Great Flood of 2015 started off as a frustrating but probably manageable velociraptor incident. We were old pros by then, of course, after 2013 and 2014’s performances. But you really tried extra hard to reduce our capacity to deal with things. Above and beyond, my friend — truly. We were battered and bruised, the kids were starting to have anxiety issues, my post-cancer positive outlook and unshakeable attitude was shaken. I got depressed, Adam was beyond unhappy, and Lyra suddenly couldn’t be alone in a room and was convinced we were going to end up living on the street, no matter how many assurances we gave her.

Just a quick reminder for you, 2015: Velociraptor Incident was NOT on your Goals and Objectives list. It was about as far from it as it could have been. I’m uncertain where you got confused, since I don’t think my communications on that front were unclear. If you thought that we needed some more problem solving skills and a more complete SWOT Analysis (Strengths, Weaknesses, Opportunities, and Threats, in case you’ve forgotten), you are mistaken. We’ve really had enough of that around here to last us at least the next few years. We are strong, and we are weak. We see many opportunities, and threats will always be there. As an organization, we’re almost hyper-aware of these things now. We didn’t need more reminders this year.

Overall, you haven’t done a stellar job this year, 2015, though it seems like you made an effort to pull up your socks and put some extra work in come autumn, and I don’t begrudge your efforts to redeem yourself from October onwards. We’re happy to not be living in hotels, or friends’ basements, or temporary rentals. It’s even better to be living in our own home, with yard and space and everything. I think if you do a self-evaluation you might figure out where you went wrong. I really hope that you did better for others, though I’ve heard mixed results from many.

Hopefully you’ll take away that you should pay attention to your goals, and try not to take initiative in a way that is completely opposite the goals of the organization. As for me, I’ve discovered that I should improve my communication skills, so that mix-ups like this are less likely to happen. I’m glad we can both say we’ve learned something.

Still, what you’ve learned is no longer my concern; we’re done here, and it’s time for me to begin orientation with 2016. I thank you, 2015, for the good things that came of your work, but I won’t lie when I tell you that I’m glad our time is at an end. Thanks, and here’s a cup of coffee to enjoy on your way out.

Now, 2016, please come into my office. Let’s start with a nice, clear definition of your goals and objectives…

Lower mainland, we seem to be at a [housing] impasse

We remain without a home, three months after the flood. I would say it’s wearing thin, but at this point there’s nothing left to wear at all.

It was over two years ago, before I was diagnosed with cancer, that we first considered buying a place of our own. We found a place, we made a bid, our offer was accepted, and we realized that the cost of daycare was about to become so crippling that there was no way we could afford both a home of our own and childcare in Port Moody, so we couldn’t remove our subjects. That was the first place we failed to buy.

Next came the cancer, and the chemotherapy, and all the stress that accompanied it. Once that stabilized and I went into remission, we started casually looking for a place to buy in Port Moody once more, as we were feeling squeezed in our apartment.

The first place we liked, back in February, we saw only on a whim. It was a nice three bedroom townhouse in the complex where Lyra’s best friend lives, listed at $333,000 and it was basically perfect for us. We dropped in to the open house on a Saturday and were unexpectedly making an offer by Sunday morning.

But so were a whole lot of other people.

We offered the maximum we could pull together for a 5% down payment on short notice, put in our offer, and hoped for the best. We were outbid by a mere three thousand dollars; but it was three thousand dollars we didn’t have. The experience renewed our excitement and hope that we actually could, in fact, buy a place that would fit our family’s needs – room for the people, room for our bikes, room for an office where Adam could work from home, and close to the daycare and school. So, while we were a bit sad that we lost the place, we decided to start looking in earnest again.

It was a month before another seemingly likely candidate surfaced. It was in the same complex. And it was listed at $90,000 more than the place we had bid on. It was more than we could reasonably afford, and we thought, “it can’t possibly go for that much; look at what the last place sold for, and this one isn’t updated as much as that one was!”

We were wrong. It sold for just under asking price.

A new market

Slightly horrified, but still hopeful, we kept looking. Vancity started offering a first-time homebuyer’s promotional loan that allowed us to increase our down payment, which opened our options up a bit more, but that last place selling for nearly 100k over what the market suggested turned out to be a sign of the future, and not some sort of anomaly.

It was a few more months before we found another townhouse to bid on. It had some compromises; 40 years old (again), asking $388,000, in a not-as-ideal-but-still workable location, with the original furnace and mostly older appliances. We did everything right with our bid – we removed all the subjects before making an offer, including paying for a home inspection beforehand, and we came in above asking at our absolute maximum of $395,000, knowing that with strata fees on top of mortgage payments, loan payments, and the CMHC payment, we were going to have slightly less room in our monthly budget than we wanted. But it was still manageable, so we took that leap.

Once more, we were outbid — this time by around $15,000. We were a little more heartbroken than the last time, because we had tried so hard to do everything right. But we regrouped and kept looking.

Velociraptors strike!

It was only a few weeks later in May that we encountered our next Velociraptor Incident: the great flood of 2015. Suddenly, we were rendered homeless; our things put into storage, struggling to find a place to live while they assessed the damage and started on repairs of our rental apartment.

Our family of four (+dog) couchsurfed, we stayed in hotels, and finally we found a furnished place to rent for the summer, in the hopes that we would be able to move back in after repairs were done. We couldn’t help thinking that maybe this meant the right place to buy would show up, finally, but the more we looked, the more the prices went up around our home community. With child daycare spaces being so hard to get, and not wanting to change Lyra’s elementary school unless absolutely necessary, we were still hoping to find a place… but the reality of our situation was getting demoralizing. Not only were fewer and fewer places available in the Lower Mainland real estate market, but we were also facing the fact that the places that were coming up were listing above our (already increased with help from the Credit Union) price range.

The forty year old Port Moody townhomes we had previously seen listed in the 350-400k range were listing at 400-450. We were getting priced out of our home area, where we had built our support and social networks, where our kids had found friends and security in their own lives, where we had easy access to our downtown jobs. People started telling us to move further east to Pitt Meadows, Maple Ridge, Mission even, and we seriously considered it and looked around, weighing the benefits vs. the costs. Turns out we don’t like Pitt Meadows, or Maple Ridge, and especially not Mission, and moving further out without any benefit other than home ownership was a depressing thought.

Enforced vacation living is not as fun as it sounds

Our furnished summer rental gave us stability and a base close to our old place, which made it easy to keep the girls in their already arranged summer daycares for the summer. All of our belongings stayed in storage except for the bare minimum. Knowing we were going to move again at the end of the summer, we didn’t want to have to unpack and repack too much. It was like staying in a vacation suite, but still having to go to work and have normal non-vacation lives.

We kept our plans to take a road trip to Oregon in early August, where we had a lovely time. And we kept trying to figure out how to resolve our personal housing crisis.

Repairs on our rental place had not yet begun by early July, and we were given no real timeline as to when they might be done. Maybe in November, if we get lucky. And even if we do move back into the old apartment eventually, it was already getting too small for us. The girls share a small bedroom; the third bedroom is Adam’s office. What little storage space we have there is taken up by bikes, which spill over into the dining area. It’s mostly underground, and damp, and while they’re supposed to be fixing the mould issue, we’re still not totally comfortable with the idea of moving back in there with that factor. We spent so much time last winter sick; it might be a coincidence, but it might not.

We have to move on August 31. September will be a combination of staying with friends and house-sitting. October and beyond is a mystery. Moving every two weeks or so is exhausting, but it’s what we have to do. The kids are showing signs of the stress and lack of stability — Lyra worries that we’re going to end up on the street, and tells us so. Adam and I aren’t doing much better.

So we’ve started to think a little more creatively. We’ve started to look at the Sunshine Coast.

It’s a tricky concept, but we’re trying to figure out how we can make it work. We haven’t found the right solution yet. We’re more hopeful about this idea, however, than we are of finding a place that works for us that we can afford in our neighbourhood.

I’ll let you all know how things progress.

On Velociraptor Incidents

I am out of cope. My whelm is over. There is a lot going on right now, and I’m not handling it as well as I normally handle things. I’m writing this late at night while sitting on a hard floor covered in pillows, in a big empty living room in a home that is not my own.

Let me back up. Adam and I have adopted a rating method to help us categorize the severity of problems and crises that we’ve had to handle in the last couple of years. It happened a bit like this, in a conversation over instant message:

Me: Hey. We should put this on the wall at home and keep track of how many days it’s been since the last major crisis in our lives.

Adam: Print one out.

So I did, and we put it on the wall and placed a post-it note with the number four on it. This was in December of 2014.

Going back a bit to late November, we had enrolled in extensive lifelong training for our dog Summer. It was a great investment, and the training was amazing for her, and without it we were worried that her separation anxiety and howling every time we left her behind meant that we’d have to find a new home for her or get kicked out of our apartment. Neither option was a good one, and we were feeling a lot of stress and helplessness. So we put $1,500 in dog training and gear on our credit card and implemented a plan to pay it back.

A week later we learned that Lyra needed more dental surgery (her first was when she was three) to make room for the adult teeth coming in to her tiny mouth. A $1,000 dentist bill later, our credit card statement was unimpressed, and we tried to adapt our repayment plan.

And four days previous to Adam’s and my conversation above — a couple of weeks after the surgery announcement — on the day that Adam’s grandmother passed away after a rapid an somewhat unexpected descent into illness, we took Summer to the 24-hour emergency vet. Her breathing had become laboured, she looked sick and weak, and she wouldn’t lie down because she couldn’t breathe when she did. She had developed pneumonia and her lungs were full of fluid, so they kept her at the animal hospital overnight and told Adam that if he hadn’t brought her in she may not have survived the night. A $1,000 vet bill later and the next morning, we brought her home, recovering.

Each of these incidents on their own were trying, exhausting, and stressful, and expensive. Having them come one on top of the next without a chance to recover and breathe in between each one, right before Christmas and in a time when we were mourning a member of our family that meant a lot to us — it was becoming too much. We didn’t know how to handle it all. And then we put the Velociraptor Incident sign on the wall, and somehow that made everything just a bit easier to deal with. It had been four days since our last Velociraptor Incident (VI).

Categorizing events in the last couple of years as Velociraptor Incidents and non-Velociraptor Incidents helped put things into perspective. Cancer? Total Velociraptor Incident. Lyra’s surgery when it happened in January? Not really, since we’d been through dental surgery with her before and knew what to expect. One thousand dollars extra on the credit card? Manageable. $3500 all at once on the card? A bit more like a Velociraptor Incident. It made it easier to cope with things knowing we had a scale against which to measure them.

Two and a half weeks ago we had another Velociraptor Incident.

The great Spring flood of 2015

Adam phoned me at work just after noon on a Wednesday, one of the days that he usually works from home. His voice was an inexplicable hybrid of calm and frantic as he told me, “We have a major problem.” From his tone I knew that it was going to be a big one.

Our place is flooding. There’s water pouring down the wall of the girls bedroom and I don’t know where it’s coming from. There’s nothing I can do.”

I told him that I would come home, packed up my computer and stood outside on Hastings St. waiting for the next bus to Port Moody. It was a long time coming, and while I waited I received update after update from Adam on how things were going.

The Strata called an emergency plumber but they haven’t shown up yet.”

The water is filling up the floor in the girls’ room.”

“It’s moving into the hallway and going into the bike room and our bedroom.”

“It’s started running down all of the walls in their bedroom. I can hear it in the ceiling.

The plumber can’t find the water shutoff valve for our unit. Or for the entire building.”

Helplessly I stood at the bus stop, then sat on a bus that took forever to get me back home. By the time I had arrived, water had been flooding our place for two hours. It was still pouring out of the walls in Lyra and Pan’s bedroom with the water reaching nearly every room in the house, and the plumber was waiting for the City to arrive so they could shut off the water to the entire complex. The dog had been sent to dog daycare, blankets and towels were trying to hold back the deluge in vain, and all we could do was shift things out of the bedrooms and into the living room our out onto the patio and watch it all happen.


I was somewhat mistaken above… it was an electrician, not a carpenter.

By the end of the day we were booked into a hotel room, the dog was booked to stay overnight at the daycare, and we were shellshocked. I had rescued some clothes for the four of us, my guitar, and a couple of books and stuffies for the kids to sleep with at the hotel. Adam had already spoken to our insurance company, our landlord, the strata, the strata’s insurance, the emergency recovery team, and all of our neighbours. And he had reset the Velociraptor Incident sign to zero.

A new (temporary) home

We sat in the hotel room that night trying to figure out what to do next. The water damage to our place was thorough and meant that we couldn’t live there while it was being fixed. And there was some mold for the strata to deal with. According to our insurance company, they could find us alternate living arrangements, but we had a fixed amount in our budget to work with. They told Adam that the places they could find would cost a thousand dollars a week or more to rent, and may or may not keep us local to the kids’ school and daycare. It was a less than an ideal situation.

I took it upon myself to find a place for us, and looked up local furnished short-term rentals and AirBnB listings in Port Moody. The very first ad I saw on Craigslist was perfect – near our neighbourhood, still on transit lines (mostly), and big enough for the family. It wasn’t available until late June, but I decided we could make it through June with the multitude of offers we had to stay at various friends’ houses, or in hotels, or other short-term rental places. So I contacted them and explained the situation and hoped for the best.

The rest of the week we spent coordinating with all the relevant parties. They had moved giant dehumidifiers and fans into our place, and all of our belongings were in various piles of disarray. Our hotel suite was only available for two nights, so we moved into a friend’s basement (one of many basements offered to us that week) for the remainder of the weekend, where we had a Skype call with our future new short-term landlords (who live out of town) and made arrangements to move into their place far ahead of the original late June move-in date. It meant we would be camping out in a giant, empty townhouse, with whatever scraps of furniture, dishes, supplies, and beds we could piece together from our friends and by scavenging our own place before our things went into storage.

We moved in on June 1st. Our things have been moved to storage from our old place as of this week, to be assessed for damage (which doesn’t appear to be a lot in most cases though some of it was smelly from the dehumidifiers) and cleaned. This place we’re renting is ours until August 31st, at which point we either move back into our old place (if it’s ready by then) or find a new place to live temporarily until it is ready. Unless we figure something else out.

My status in all this?

I’m tired. It’s not from lack of sleeping – with no home internet for the last two weeks, I’ve been getting plenty of sleep. But the cumulative stress over the last two years has caught up to me. Each individual thing we’ve dealt with since early 2013 – almost buying a townhouse and deciding the timing was wrong (VI), then discovering my cancer and going through that treatment while trying to start a new job (VI), and then Adam developing a severe stress-related sickness for seven months once I was in recovery (VI), plus the aforementioned dog and massive expenses in December items (more VIs) they’ve torn me down a piece at a time. And the thought that we have to move again in less than three months — so don’t settle in fully or anything, folks — is exhausting.

I’ve lived optimistically for a long time. It hasn’t always been easy, but since my late twenties or so I learned how to do it, and eventually it came easily. I usually believe that things are going to work out, and while I may feel stressed and tired for a little while, I snap back to hope pretty quickly.

My elasticity is gone. I hesitate to say I’m depressed, but that’s partly because I don’t want it to be true. I don’t think I’m there yet; perhaps I am pre-depressed. But I’m not myself, and it’s all I can do some days to put my self together and get things done. Getting things done and dealing with things is what I do, so I am doing it, but I am exhausted, unhappy, and overwhelmed by it all. I feel as though this one thing is beyond my capacity to get through with any sense of humour. I am just a bit broken, and I’m lucky to have Adam to pick up the pieces I can’t hold together.

Part of me doesn’t want to move back in when the old place is repaired. It was already getting too crowded as the girls got older, and it was always damp and underground and dark and not ideal. But we find ourselves facing townhouse purchase prices beyond what we can afford as first-time buyers, or renting a bigger place that will cost easily twice what we currently pay in rent (as much as or more than a mortgage without providing any long-term financial benefits of being in the housing market). I feel trapped, which leaves me feeling hopeless. It’s not a feeling I enjoy.

I’m not who I want to be.

I want to think that this is an opportunity to pursue a major change of some sort in our lives. I want to turn this into something to be hopeful about. But I’m struggling with just getting through each day.

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?

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.

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?

Format Video

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.