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.
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.
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?
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.
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…
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.
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 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.
“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.
It’s been a couple of weeks since my last update. Things got busy, and I got tired.
Pandra and I simultaneously caught a cold. It was just a cold, though. We’re still both getting over it. Adam also caught some kind of bug, although it seems slightly different from the cold Pan and I have. He’s just starting to feel better. And now Lyra’s catching it, because we should never all be reasonably healthy at once.
The mid-treatment PET scan
Early in January I had a scheduled PET scan to show the progress of my treatments and how the tumors are reacting. And then my doctor was a way for a week, and I didn’t actually see her again until January 24th, so I didn’t get to hear the results for weeks. This didn’t really bother me very much, but the rest of my family was impatient and kept asking about the results. At one point I had to promise them I wasn’t trying to hide anything from them… I just didn’t have anything to tell them.
At the Oncologist appointment, she told me that the tumors were resolved — especially the two smaller ones, and probably the largest as well. It was pretty much the best possible news we could get, and everyone was thrilled to hear it. Except I didn’t really feel much about it either way. I was happy, but I didn’t really feel like celebrating or anything yet. In my mind, of course the chemo was working, and of course the PET scan would show as much. It was odd to not feel happier about it. It still is.
Since the scan showed I had such a positive response to the chemo so far, the Oncologist told me that she would not extend my treatments to six instead of four. This made me happier. Four treatments meant I’d be done at the end of February. Six would have meant at the end of April or so. I’m very, very tired of chemotherapy.
But because the PET scan is considered a clinical trial, it is not the official tool to say that I am cancer-free. For that we need another CT Scan, which is scheduled for tomorrow (or today, depending on when you’re reading this). I get to drink a bottle of Readi-cat (Barium) and have my torso scanned in a tube. More fun with hospital machines that go PING! And so, in about a week, we may have a full ‘all-clear’ on the cancer front. But I still have one chemotherapy session left, the day after BC Family Day, to complete my treatments.
The Medi-port, anxiety, and me
My port installation finally got booked, and I went through some serious decision-making processes to figure out if it was worth going through with it. It was due to be put in one week before my second-last chemo treatment. When the nurse at my chemo session on the 14th told me the date, I asked her outright if I should go ahead with it. She didn’t say no, and she didn’t say yes, but she looked at my arms and said something like, “Well, I’m running out of veins in your arms…” and didn’t say anything else about it. So she left it up to me entirely, but it seemed to me that she thought I’d have a better time of chemo, even with only two sessions left, if I had a port.
The week that I had to make the decision was the week my Oncologist was away. I considered phoning to talk to one of the other doctors about it, but that set me on an anxiety loop that I couldn’t mentally handle right after chemo. I had phone anxiety coupled with talking to a doctor I didn’t know anxiety, and eventually defaulted to running out of time to make that call and ask their advice. By that point I had talked myself into getting the port for the most part anyway, but I felt like the anxiety had defeated me. Phones and anxiety shouldn’t make life so hard. Sometimes they do for me.
Port Installation Surgery Day!
So on Monday, January 20th, I went in for my port surgery at Royal Columbian Hospital. It was an early morning day-surgery, so I was at the hospital by 7:30am. A radiologist performs the installation, with local anesthetic and some mild sedatives. At least, they were pretty mild sedatives for me. I talked to the doctor the entire time he was working on me, asking what he was doing. He was pretty happy to explain it all to me in great detail, which I thought was awesome. The anesthetist kept asking me if I needed more sedatives — apparently I was far too coherent to be not freaking out about what was going on. She made me confirm that they were working at all (yes, they were), at least once.
I just think surgery is cool, and I wanted to know what was going on. By the end of the procedure, the radiologist doctor told me that he thought I’d probably enjoy performing it. I agreed, of course. Because surgery is neat.
I was picked up and home by twelve-thirty, so Adam and I went for lunch at the pub down the hill from our house. I was a bit sore and still recovering from the local freezing and the sedatives, but overall in good shape. I was back at work (albeit sore) as a cyborg by the next day. I am Jenutor of Borg. Resistance is futile. You will be assimilated.
So the port installation experience overall was a good one. I was uncomfortable and a bit sore for maybe five days at most. And then I got to go to chemo a week later and find out what the big deal was.
Chemotherapy with a port vs. without
My experience with chemo, specifically with the Dacarbazine, has been unpleasant. My veins are not what one calls ‘good’ veins. The first one they ever tried collapsed instantly. The nurses got in the habit of warming up my arms before chemo to see which veins popped up with the most potential. They administered the Red Devil (Doxorubicin) very, very slowly.
And then there was the Dacarbazine. It frequently burned my veins. The nurses would slow down the pump, and add more saline, and slow down the pump more, and wrap my arm in a heating pad, just to try and stop the burning. It often took two hours or more just for this one drug to get into my system. And after one treatment in my second month of chemo, my arm felt like it was burning for a week or more. It was not my favourite thing.
With the port in place, there was no struggle to find a vein. They just clean the port area, plug a needled thing in, and have a direct line into a much larger vein that’s closer to the heart. It was quick and there was only a mild sting, no different than any other needle. Needles and I are good friends these days.
The Dacarbazine through my new port took about an hour. Not 2+ hours. And I discovered something interesting. I had been leaving chemo treatments for months feeling thick and bloaty and like my face was puffed up and weird. I thought it was just a chemo thing, but after the port chemo experience vs. the non-port experience, I realized that those feelings came from all that extra saline they were using to dilute the Dacarbazine.
I love you, Port, and I wish that you had been installed when you were initially supposed to be, way back in that first month or so of treatment. If you are considering whether or not you should get a port, I am now strongly on the side of saying “yes, you should.” I may only have two chemo treatments with this thing in, but even that is worth it. So very worth it.
Coming up to the end of Chemotherapy
This past Monday was the first session of my final chemo cycle. That means I have one treatment left in this cycle, which means that two weeks from now I will be done chemo. I won’t be quite better yet; that won’t happen until the end of February or early March, once the last of the chemo drugs have had their way with me. And then, if all is as the PET scan suggests (and tomorrow’s CT will likely confirm) I will be officially cancer free. A report sent to my family doctor that I got to see this week had the term CR on it – Complete Response, or Complete Remission.
That doesn’t quite mean cured yet, though. Lymphomas do have a chance of recurring after they’ve been eradicated. So while I will be cancer free, I may not be officially considered cured for years. I’ll be going back to see my Oncologist regularly, and as time goes by the space between my appointments will get longer. It is unlikely that my cancer will relapse, though.
Maybe it hasn’t sunk in yet. Maybe it’s just hard to believe when I’m still feeling pretty craptastic from chemo itself. Maybe I’m just tired and ready to feel normal again. But I know that I’m close to the end of this part of my life, and it isn’t an overwhelming sense of joy or relief or …. well, anything, yet. It might take me a little while to catch up with everyone else’s excitement over my being cancer free.
Life is a bit different now. I am curious about what happens next, and how other things in my reality will be affected by this experience. Yes, that’s probably the best word for what I feel right now. Curious. And I’m ready to be done with chemo.
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…
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.
I was having my usual low-energy-five-days-after-chemo sort of day, where I just wanted to sit around and do nothing much. My cough and cold I had picked up from the girls was pretty bad, so I mostly did exactly that, other than a short trip out to North Vancouver to buy a new backpack for Lyra and pick up Adam’s brother to bring back to our place for a visit. Even that seemed like it was pushing it, though, so we went home and relaxed for the night.
I felt worse as the evening progressed. My cold hadn’t been getting better — I had been coughing so hard my stomach muscles were killing me. But the doctor had told me on Monday to take anything I needed to for the cold. I took some NyQuil and went to bed, hoping I would feel better.
The first time I woke up was because I felt off. As I lay in bed listening to my body, it suddenly told me that it wanted to remove all traces of sushi dinner from my stomach, via the route it entered. I obeyed, and spent some time in the washroom throwing up into the toilet. It was unpleasant.
And then I started wondering if I had a fever, but was too out of it from NyQuil haze to really keep that thought in my head. I crawled back into bed with Adam, and went back to sleep for a little while. At least until I woke up again with the feeling of needing to puke again. So I did. And also had some diarrhea. It was even more unpleasant than earlier.
Adam took my temperature and confirmed that I did, in fact, have a fever. I curled up on the couch and coughed a lot and felt generally terrible, occasionally puking into a bowl. Adam phoned the Oncologist’s pager to find out if he should take me to emergency, and I guess she could hear me coughing in the background and I did not sound great. She said yes, and told him that the hospital near our house (Eagle Ridge Hospital) would be fine to take me to. We weren’t sure, because they don’t have a cancer unit there so they don’t necessarily have experience dealing with cancer patient care in emergency, but she said if they had questions they could call her.
I threw up at least one more time, had some more liquified poop fun times, and discovered that my period had started. Fun. I changed into the most comfortable clothes I could find with the expectation of staying in hospital for who knew how long, we woke Jordy up, told him he was in charge of the children until further notice, and Adam whisked me off to Eagle Ridge Hospital (one block away), where the ER was almost empty.
I felt terrible. Beyond worse than I can remember ever feeling. Absolutely at my lowest, and fighting some vague despair that had me wondering how people could keep the will to move forward through feeling so bad. I went away mentally for a while so I wouldn’t have to deal with the despair. It was the lowest of my low points.
I registered with the ER admissions nurse in a combined haze of NyQuil and feeling the worst I have perhaps ever felt in my life. Adam gave them my Bleomycin lung damage card (the one that says I can’t get Oxygen therapy because I’ve had to take Bleomycin for chemo) and showed it to every subsequent nurse or doctor who had anything to do with my care. I’m glad he was attentive, because I was not particularly. I remember thinking, and possibly articulating to Adam, that I felt worse than I had ever felt in my entire life, and I did not like it. Not one bit.
I got moved into a room in the ER, and IV’d up. They sent me off for chest x-rays and then installed me into a very small room in the ER. I drifted in and out of coherence throughout the whole thing, and was thankful not to be throwing up any more. At one point the doctor treating me said he was going to put me on an antibiotic and left the room to get it set up. He poked his head back through the door after a minute, saying “I’m going to put you on a different antibiotic because I looked one up that’s specifically for chemo patients, so that’s what I’m going to put you on, and you really don’t care what antibiotic I put you on do you?” I half-grinned at him and said “Nope, whatever you like”.
Adam updated Facebook with a message to let people know what was happening with me:
I’m starting to dislike feeling so at home in hospitals. Two trips to Eagle Ridge ER in one week for two different family members will attest to that.
Jenny spiked a fever and immediately started throwing up last night (serious stuff when chemotherapy is involved and the immune system is suppressed), right on the day of the lowest point in her chemo cycle. A quick call to her oncologist at 3am confirmed she was to report to the closest hospital ER immediately. Lucky for us Jordy was staying with us so I was able to leave him with the kids. I hadn’t slept all night as it was so was awake and pretty much ready to go.
4 hours later we’ve had a barrage of blood tests, an IV of antibiotics and she is finally asleep. I’ve snuck out of the room for a quick breather
Mission to stop the cold that ravaged my kids over the past three weeks from reaching my wife: Failed.
So far, not fond of Christmas this year. All I really want for Christmas is a return to some sense of normalcy, and about 3 weeks sleep.
This ceiling is starting to look too familiar.
I stayed in that little room with saline and antibiotics pumping in to me, drifting in and out of a very restless sleep while time stood still. They brought me a breakfast that I chose not to eat, because puking sucks and I didn’t trust myself not to do so. Adam sat with me and worried, I assume, but I think he felt better that I was at the hospital than if I was at home being sick. He didn’t sleep, and hadn’t slept much before we went in to Emergency. At some point a friend came to the hospital and sat with me in the tiny ER room, sending Adam home to get some sleep. He needed it.
They came to tell me they were going to move me up to a room in the hospital ward upstairs, and that they didn’t know how long I would have to stay. I didn’t like not knowing how long I’d be stuck in the hospital, and continued feeling pretty terrible. There were no windows in the ER, so I had no concept of time. I woke up sometimes and chatted with my friend Susan, but I wasn’t feeling particularly conversational, and kept falling asleep.
Sunday, December 22nd: My very own hospital room
Eleven hours after arriving at Emergency, they finally moved me upstairs to a room. I had seen at least two doctors who didn’t know what was wrong with me, had a couple of vials of blood taken for tests, and had no real answers about anything. But I was glad to be moving into a quieter, private space. It was 2pm.
Susan was still with me when I moved, and let Adam know where I was when he woke up so they could exchange shifts. They continued pumping antibiotics and saline into me, and I continued feeling terrible. I hadn’t thrown up again, but I did have some more diarrhea, which was SUPER FUN when you’re dragging an IV around with you to the toilet. Plus I had my period to deal with, just to complicate matters more — extra cramping, general discomfort, and a nasty headache on top of all the rest. The nurse gave me some Tylenol for the headache, which helped, and Adam brought my hot water bottle with him to the hospital when he returned, which was good for the cramps.
I ate the first of my hospital meals — a turkey cutlet and some potatoes and vegetables. It was everything you expect from hospital food.
Adam left around 7pm after bringing me a dragon from Lyra to keep me company, and my friend Jenn came over at 7:30 for a short visit. I had been going through some nasty nausea post-dinner and wasn’t sure it was staying down. Fortunately for everyone it did.
That night I slept in a few uncomfortable shifts, waking up because the IV was uncomfortable, or when the nurse came in to check my temperature and blood pressure, or give me more antibiotics. At one point I had a fever again, so the nurse gave me some more Tylenol to help bring it down again.
Monday, December 23rd: How long do I have to stay?
I woke up to a hospital breakfast of scrambled eggs and moist toast and some more antibiotics that left a terrible taste in my mouth. I had not puked in a long time, but I still had liquid stools, which were really not much fun.
A doctor came in to see me, and told me that they still didn’t know what I had, but my tests would probably take another 24 hours to get all the results, so I was going to be staying for at least one more night, possibly more.
Adam somehow found people willing to help with the girls, since he had to work — and by somehow found people willing, I mean had people offering to help from all corners. Lyra mostly spent the day with him, since she could entertain herself as needed, but a friend took Pandra for the day (and then kept her for the night so Adam could get a real night of sleep).
Another friend, Steve, came to spend the day with me in the hospital, which was above and beyond what was necessary. I appreciated having company, though. It was nice to have someone to talk to in my little room. Adam and Lyra came by for a lunchtime visit, and then came by again at the end of the day to hang out with me before visiting hours were over.
I had Adam phone the other Hospital, Royal Columbian, to tell them what was going on with me at Eagle Ridge. My medi-port surgery was scheduled for the next morning at 9am, but I didn’t really think it was going to happen, all things considered. Royal Columbian called Eagle Ridge and spoke to my nurses and doctor, who then came and talked to me about it.
They told me that, if I wanted to go through with it, they could send me to RCH under a patient transfer, where they would take over my care. I didn’t much like the idea of moving hospitals, and my stomach was still not right. The more I thought about going through with a (albeit minor) surgery while still trying to recover from the cold and fever, the less I liked it. I told the doctor that I really didn’t feel up to going through surgery after everything, and he agreed that it was probably for the best to put it off.
Otherwise, it was a quiet day, filled up mostly with random conversation and really hating the taste that the antibiotics left in my mouth. You take the bad with the good sometimes. A few people joked about getting some time away from the kids to rest, and it was somewhat true, but they all knew as much as I did that I’d rather be at home.
That night I had a lot of trouble getting to sleep, and really started feeling like the antibiotic was messing me up as much as everything else. I still had the diarrhea issue, but no nausea any more, and no throwing up. I woke up often throughout the night, though, and it was not nearly as restful as one might hope for. I spent a good part of the night on the internet after failing to fall asleep.
Tuesday, December 24th: Christmas Eve
I woke up on Tuesday morning feeling almost human again and ate another hospital breakfast. I also hadn’t had a fever all night, which made me happy — no fever meant a higher chance of going home, and being home for Christmas.
We had completely missed our opportunity to do our last-minute Christmas shopping. We were going to go on Sunday, but my hospital visit threw that off. We got lucky though; friends ran errands for us, delivering groceries and some Christmas treats for the girls. But I was ready to go home, and be at home with my family, and I think they were ready for me to come home. I anxiously waited for the doctor to show up and give me an update.
He arrived around 9:30am or so and told me that they hadn’t found any C. Difficile in my tests, and no signs of any bacterial infection, so I could come off the antibiotics (yay!). He also said my bloodwork came back saying that my white blood cell count was really good, especially for someone on chemo. There were some other tests that would take about a week to come back — for different parasitic infections — but he didn’t think that would end up being an issue for me. So basically I just got hit, really hard, by a viral infection that gave me a fever. And fevers are bad for me while I’m on chemo, which was why we went to the hospital in the first place.
Since none of the tests came back saying anything really bad, the doctor told me I could go home any time. I thanked him and sent a message to Adam letting him know that I could come home, and he should come get me soon. He was as happy as I was, and said he’d be there within the hour, so I started getting my stuff together and cleaning up my room.
The happiest moment was when the nurse took out my IV. I was so tired of that IV. I was tired of the antibiotics making me feel crappy. And I was tired of hospital food. I wasn’t yet 100% better energy-wise — I was tired and still felt crappy, but not nearly as terrible as I had a few days before. When Lyra and Adam arrived to bring me home, I was glad to leave the hospital. They were really quite nice and treated me well while I was there — all the nurses were kind and friendly, and I never felt like an inconvenience, even though they had to put on extra protective gear (goggles and a paper robe and gloves) just to come into my room so that I wouldn’t get more sick from them. The doctors were also pleasant and easy to talk to. I would recommend Eagle Ridge Hospital to anyone who needed care.
And so I got to go home for Christmas Eve with my family, and was home for Christmas day. I wasn’t stuck in the hospital on Christmas day, and for that I was thankful. A lot of friends came through for us, either visiting me or helping Adam with the girls or delivering groceries or whatever else needed to be done, and they were awesome. It’s impossible to thank them all enough.
Christmas itself was quiet and laid-back. I still wasn’t feeling normal, so we kept things really low key. We had a tasty turkey dinner at yet another friend’s house on Christmas day. It didn’t really feel much like Christmas for me, but I did my best not to dwell on it.
Next Christmas, though, is going to be absolutely amazing. And there won’t be any hospital food.
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.
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.
I’ve been keeping track of my chemotherapy side-effects as much as I can, because I like to document everything, and because I know I won’t remember it all when it’s over. Most of them are as expected — fatigue, feeling nauseous, not being able to taste things. I’ve had it fairly easy, on the scale of crappy chemo side effects. But that isn’t to say that it’s been a breeze.
Some of the side effects of the drugs I’m on are what one might call “safe for public consumption’ — as in, talking about them doesn’t really make anyone uncomfortable. But there are others that aren’t so pleasant to talk about or hear about. I’m not willing to censor for myself for the squeamish, however, so if you’re reading this and don’t want to know the uncomfortable truths about my body while it goes through chemo, you may wish to stop reading now. Not that all of these will make you uncomfortable, or maybe not any of them… just be aware that some of them might be what you’d consider Too Much Information.
Things just aren’t quite right
The first set of side effects are the ones that just make everything strange. Included in this category is my newly discovered sense of taste: or rather, the lack thereof. I can’t taste much anymore. It seems that sweet has become just plain disgusting, so I don’t eat many sweet things these days. I put vinegar on french fries with lunch the other day and I couldn’t taste the vinegar; added more, to no avail. Sour is gone too. Foods that used to have a pleasant flavour are either bland or gross, and foods with an unpleasant texture and no flavour are an entirely new experience. I used to eat oat bars from Starbucks as an occasional treat; they are now flavourless mushy piece of damp cardboard. A turkey burger was a dry piece of cardboard surrounded by squishy flavourless goo and a mushy bun. Texture has become an important factor in my food choices. Crispy, crunchy, multi-textured foods are good. Lemon ginger tea tasted exactly like hot water. Mushy, squishy, gooey, or overly dry foods are not. I can still taste spicy things, so I put sriracha on almost everything I make at home. And I can also taste peppermint, which I don’t even like but have started drinking the tea anyway, and salt. Food is an entirely new experience.
Another weird side effect that’s more annoying than bad is what I’m starting to think of as my chemo face mask. I find it very hard to explain to people, and I’ve tried various methods of doing so, but I don’t know if it’s made sense. From time to time (usually at least once a day, sometimes for hours, sometimes for less time) my face starts to feel thick. It’s a bit like if I was having an allergic reaction to something on my skin – no hives or burning sensation, just a feeling of thick, almost-but-not-really tingling of the face. It feels a bit like it’s swelling, but that isn’t what’s happening at all. As far as I can tell there is no physical reaction that’s happening — there is no swelling, no rash, and nothing looks abnormal. It just feels very, very strange… and thick. Like I’m wearing an invisible mask over my face. It is annoying.
And of course, there’s the infamous chemo brain. It’s a bit like baby brain — if you’re a parent, you may know what I’m talking about. For me, chemo brain seems to attack my communication centres the hardest. I lose the ability to type coherently. I forget simple words. I can’t string a proper sentence together effectively when I talk. My writing suffers. My short-term memory completely disappears, to the point that I need to take notes during a conversation with someone to make sure I know what they were talking about ten seconds after the conversation ends. I have to push myself to listen properly; my mind wanders very easily, and I lose focus completely on everything. And I forget important things, and little things. It’s frustrating — especially when communication is one of those things I like to think I’m good at.
Minor physical issues
I’ve had a few physical side-effects from the chemotherapy that aren’t really a big deal, but are worth noting. I’ve had some neck and back pain. My skin is exceptionally dry. My throat is dry, and I’ve had some phlegmy crud in my nose for a week. I get exceptionally tired every day around 2pm. My IV arm aches dully on occasion. My face is flushed and warm for the first four days after chemo. My fatigue has a definite cycle — I’m at my lowest energy level on the fifth and sixth days after chemo, and then I start to regain a sense of near-normalcy.
Fatigue is insidious and evil
My lowest-energy days fall on the Saturday and Sunday after Monday’s chemotherapy sessions. In a way, this is good, because I can just be at home. In a way it is also bad, because I am at home, but so are my children and husband, and the girls especially want me to do things with them. It’s a challenge. By the end of the day this past Saturday, I was so tired that I couldn’t think. While putting the toddler to bed, I had my first wave of fatigue-induced despair. I started to think about how exhausted I was at that moment, and how wrong and unhealthy I felt, and it overwhelmed me. I stood next to Pandra’s bed, looking down at her before turning out the light, and wondered how I was going to get through months of feeling like this. It upset me that I didn’t have the energy to play with her or Lyra all day, and that I was so tired I couldn’t stay on-key while singing to her. It isn’t fair to them, and it isn’t fair to Adam to have to pick up so much slack in the parenting and household-running departments.
I had to take a few minutes to let that despair wash over me, to let myself feel that frustration and sadness, because if I block it out it comes back stronger, harder, with a sharper edge. And then I carried on doing the things that had to be done, and I spent Sunday relaxing with my family, and by Monday morning I felt like myself again. I’m right — this isn’t fair. But it’s what we have to work with right now, so we will make it work.
Ah, the lovely digestive system
I’ve been lucky. I haven’t had the nausea and puking that many people seem to go through with chemotherapy. My anti-nausea drugs are doing a fine job of managing all that on my behalf. The closest I’ve come is an occasional dizzy spell and bouts of vertigo when I watch things move past me. This week I’ve had some stomach issues that manifest as queasiness that feels like hunger, or hunger that feels like queasiness. I can’t tell which it is, so I eat something and feel better for a while, until it comes back. That seems to be working, so I’ll stick with it. I’ve gained weight though, which is the opposite of normal for chemo patients, from my understanding. Not a lot… just a bit.
The drugs have, however, made me a bit constipated. I’ve been taking senna laxatives daily on the advice of the doctor and pharmacist, which has been working well, but there are evenings when either I forget to take them or irrationally think that I’m doing fine and don’t need to take them that night. This always ends badly. No matter how tired I am when I have crawled into bed and then realized that I forgot to take them, I really must get myself back up for them. Otherwise, the entire next day I feel crampy, bloated, and just plain bad in the lower abdominal region. It’s not the greatest of feelings. Oh yeah, and I get kind of gassy. Good times!
On the other side of it, when I do remember to take them, it means when I have to go, I have to go right now, or else bad things might happen. I’m learning the signs, and making sure I’m near a washroom when I need it. I would really prefer not to soil myself in public, thank you very much.
Anemia and girl problems
I was warned about anemia (low red blood cell count), and told to increase my protein. I’ve been doing so pretty effectively, but anemia has still been a bit of an issue. I notice it most when I wait too long between meals, or when I eat a meal that has too little protein in it. I start to get shaky and more hangry than I normally get (which is pretty hangry). I do my best to manage it, and I think I’m doing okay so far.
My period started the day after my last chemo treatment. It was considerably lower volume than normal, especially on the first couple of days. It stayed fairly light for the duration, and was generally less intrusive than it normally is, although I still got crampy and cranky for a couple of days. So there was an effect, but it wasn’t terrible.
Energy and activity
Because my energy is pretty low for the first week and a couple of days after chemo, I don’t get much activity in. I felt overwhelmed by my lack of DOING, so by the end of my two-week cycle, when I started to feel normal again, I crammed as much activity into my two weekend-days before my next chemo treatment. On Saturday I went for a hike with Adam up the mountain by our house, and it was lovely. On Sunday I went for a 5k run with Adam and our friend Maryn, which felt really good (hooray for weekends with babysitting!) then came back home to get the girls and go out for a walk in the woods at dusk.
It was lovely to get out so much on the weekend, but when we got into the car to head home, all I could think about was how much I was dreading going back in for chemo the next morning. I did not want to go. But go I did, to begin the cycle anew. It’s going to be like this for a few more months. I can handle it if I know what’s coming. I expect it will continue to have ups and downs. So does everything in life.
Yesterday was my chemo day again. It was not fun, and I could feel my ability to think and communicate draining away from me as I got pumped full of the chemo drugs. It was hard. But today I feel a bit better, and less tired, and I know what I”m in for over the next two weeks.