Life hasn’t been put on hold while I undergo chemotherapy. I’m not really one to put life on hold, in general, and I haven’t felt the need to do so. I have been taking it easy when I need to, taking shorter days or entire days off, choosing not to commit to things because I don’t know how I’m going to be feeling when I get to the date in question, and that sort of thing.
And I’m still going to work. This seems to be catching people off guard — from family, to co-workers, to random other folks who hear about it. But It is honestly the best thing I can be doing right now, for my own sanity.
I have some good reasons:
Work keeps my brain occupied. If I were to sit at home and spend my time relaxing, I would get bored. I don’t enjoy being bored. It’s really not for me. When I get bored, I get sad. When I get sad, I get apathetic. When I get apathetic, I have no energy to pull myself back out of being bored. And if it goes on too long I start to feel completely drained and depressed. It’s just a bad thing. Plus, right after chemo, I can’t even play video games to entertain myself — they trigger nausea. Nobody wants that.
My workplace is interesting, fun, and understanding. You may remember that I just started this job at Affinity Bridge in July. I’ve only been there for four months now, and I’m still learning the ropes and figuring things out. I like the challenge. But I feel like if I take too much time off, I’ll forget things. Not that they would hold it against me — they’re among the most understanding, supportive, and fantastic bunch of people I’ve ever been able to call my team. If I need time to focus, or to go home early, or an unexpected coffee break, they get it. I fell asleep in a meeting one day last week when it descended rather deeply into programmer-talk. They may have made fun of me for it, but they certainly won’t hold it against me. And that is just what I need right now.
I don’t feel that bad. Yes, I’m doing chemotherapy. Yes, there are some crappy side-effects that include dizziness, chemo-brain (aka forgetful absent-mindedness with a side of inability to type accurately or remember words), occasional narcolepsy, and a general low-level energy drain that slows me down a bit, among other things. But it’s really not unmanageable. I can still get things done and contribute in some sort of valuable way. I can be useful. I am not a fragile little snowflake who will melt if you breathe on me wrong. And that makes me happy.
Keeping things somewhat normal while something entirely abnormal is happening to my body helps me stay grounded. The chemo and anti-nausea drug side-effects can be strange sometimes. If I have too much time to sit around just feeling things, and thinking about everything that’s going on, I could get lost in it. I’d prefer to be stable as much as possible right now, for my own sake and for my family. It’s good to have external things to think about.
So I go to work when I feel up to it (which is most of the time), or I work from home, or I take shorter days, or I nap when I need to. I’m in a bit of a haze sometimes, and I can feel my brain acting sluggish, but when I work through it I feel better. I want to keep my brain working, even when it doesn’t want to. I’ll use whatever memory tricks I need to, I’ll ask questions when I have to, and I will try not to be too apologetic for things that don’t matter that much, because I am not a rocket surgeon and no one will die if there’s a typo in my documentation.
When I’m in a low phase and immuno-compromised from the chemo, I may not go to work if people are sick, or if I’m worried about the commuter train. The family and I have have our flu shots, at least, but the kids and Adam all had colds in the last week and I had to do my best to avoid too much contact. It’s almost easier to avoid contact with people at work. They don’t drool on me. At least not so far.
Working has been good for me through this. I am lucky to have such a fantastic and understanding workplace, boss, and set of co-workers. I feel comfortably free to do what I need to do to take care of myself through this, while still feeling like I am a part of the team — still needed, still important, but with the freedom to step back when I need to. I don’t know if everyone else going through something similar has the same kind of support network around them when it comes to their workplace. I’m sad for them if they don’t, but I know that there are also resources out there through the Cancer Centre that can help for that, if needed. There’s a social worker on my cancer team who told me that specifically, so I guess it’s an issue for some. That is unfortunate.
I am lucky. My workplace is understanding. My co-workers are awesome. I feel support from them throughout this experience. I have it pretty good, for a cancer/chemotherapy patient. And my life feels nearly normal for enough of the time so that I can be a stable, functional member of society and my family.
Today was my second chemotherapy cycle of eight. It went smoothly, although my arm is a little bit sore from the IV drugs. I’m looking forward to getting my port installed so I can upload the chemo drugs more efficiently and with less burnination of the countryside (aka my veins).
So I’m doing fine, and the doctor and nurse figure my hair will start falling out in clumps very soon with this treatment. Things are progressing as they should.
For the past few years, my good friend Elijah has been taking part in the British Columbia Ride to Conquer Cancer. The first year, he was not a long distance cyclist and I watched him train and fundraise like crazy until he was ready. And then he did it, and was awesome. And then he kept doing it year after year, and I remained impressed.
When I had lunch with him early on during my cancer diagnosing phase, he told me I should join him in the 2014 ride. I had joked in the past that I might do just that someday, but I was honestly terrified of the fundraising requirement — $2500 minimum to be able to join the ride. They take their fundraising seriously, and I was severely intimidated.
With cancer and chemotherapy looming ahead of me, I thought about that barrier, and the fact that I don’t own a road/commuter bike anymore (another barrier) and thought, hey… why not?When I couldn’t come up with a real reason beyond those to things I was afraid of (raising $2500 and budgeting for a bike), I realized that they were just that — fears — and if I could get through the cancer and chemo experience, budgeting and fundraising would be a breeze.
So I said yes.
I am now fundraising and thinking about what bike to buy and trying to put aside money for said bike and thinking about training for a 200 km ride over two days from Vancouver to Seattle. The ride isn’t until June, so I have time to finish my chemo and do some solid training, once I get a bike. I’ve nearly met the $2500 minimum, and if I do I will increase my personal goal and do my best to meet it before June.
I mean it. I have always wanted to shave my head. My hair is thick, dark, and dense. There’s a lot of it, and on hot days, or when I’ve been wearing a bike helmet, or when I go running, my hair gets in the way. Plus, I love rubbing someone’s shaved head. It feels so nice.
The first thing I thought of when chemotherapy came up was that I would lose all my hair. Instead of getting worried or nervous or freaked out by it, I got excited. With as much hair as I had when I was diagnosed (it was well past my shoulders) I knew that the hair loss process was going to be a bad thing for our shower drains. I had to take action.
After my first week of chemotherapy, I knew it was getting time to get rid of the rest of my hair. On short notice, I booked the common room in my townhouse complex, invited a bunch of friends over for a pot luck party, and told them they could all help me shave my head.
It was a great party, full of good friends; the people I know are around, ready and willing to help me and my family get through chemotherapy, and cancer, and everything in between. It’s something we need, since most of our extended family (except Adam’s brother Jordy) is three timezones away. The affirmation of our community of friends meant a lot more to me than I could really express at the party. One friend talked about her take on the whole thing in her blog.
Lyra — the second person to help me shave my head, and the first of the children to give it a try — wanted me to have a skunk hairdo. The closest we could come up with was a mohawk… so that was what I went with.
The thing about hair…
Here’s the thing about my relationship with my hair. It’s completely temporary. Got a bad haircut? It’ll grow out. Haven’t had a haircut in a year and a half? Whatever, it’s fine, got get a haircut or something. Not happy with the colour? Try a different one. Don’t like the results of the new colour? Wait a bit and see what happens, or try again. I was a redhead for six years because I was tired of dark brown, and then one day I stopped dyeing my hair. I’ve had purple, blue, pink, and orange hair, usually on purpose.
But I’ve also never been someone who puts much daily effort into my hair. When it’s long, I get the most compliments on it if I haven’t washed it in four days. Most of the time I remember to brush it in the morning. I own a hair dryer, but it hasn’t been used in six years or more. I like my hair, but I don’t give it any extra attention. It’s just there. And it keeps my head nice and warm.
Now I have a mohawk, and I’ve been going to work like normal, and wandering around my usual haunts. From those who know me I’ve had nothing but compliments. Apparently I can rock a mohawk, and that is kind of awesome. I’ve seen a few confused glances from strangers, and I sincerely wonder if the ‘hawk changes people’s perception of me on levels I don’t know. It might be harder to, say, get a job after an in-person interview or something. Or maybe it wouldn’t, I don’t know.
What I know is this: my friends are willing to come to a party just to help me shave my head. I know a lot of great people whose opinions of me obviously will not be lessened by my ‘hawk — and even acquaintances have had a universally positive response, from the baristas at my usual coffee shop to the people who take care of Lyra before and after school. Some of those folks don’t even know about the cancer thing.
Soon enough my hair will start thinning and falling out. I will likely shave the awesome mohawk right down when that happens, and go with the bald look.
But I have a feeling that, after chemo is over and done with and my hair has returned in whatever form it so chooses, the mohawk may reappear… because I rather like it.
Lyra now tells me that she wants to shave her head into a mohawk too. What better indicator of its awesomeness could there be but mohawk solidarity from your five-year-old daughter?
My first week post-chemotherapy is winding down. I have reached a level of tiredness that goes beyond what I would have ever called ‘tired’ before. It’s almost like I can feel myself physically breaking down internally, and there is nothing much I can do about it but ride out the wave until I reach the shore.
But let’s back up a bit.
Monday was chemo day. I already told you all about that. Tuesday was my first recovery-from-chemo day, wherein I stayed home and relaxed. I went out for an hour with Adam to run errands and felt reasonably well, all things considered. I declared Tuesday a resounding success in handling chemotherapy, and decided to go in to work the next day.
Wednesday morning, I woke up on time and took my meds, and then made it out the door in time for my train. I was in a good mood; going to work made me feel like things were still somewhat normal, even if they’re not. The anti-nausea medicines did a great job of managing things. The first weird side-effect I noticed was that, after riding the commuter train in to work, my ears got blocked up and wouldn’t equalize. It lasted for about an hour and then went away.
Taste had already started to go away by this point, but it wasn’t completely gone. I went for a meat-fest of lunch with my co-workers at a Southwestern BBQ restaurant, and did my best to increase my protein and iron intake. It was good. The after lunch food coma was partially due to the amount of meat ingested, but by 3:00 p.m. Internally, my mind was muddled and my brain felt sluggish. I was feeling drawn and tired, so I abandoned my post and fled for home.
I still felt all right enough to go in to work on Thursday morning, however. Once again, the train ride made my ears block up for an hour. I noticed that food was remarkably flavourless, including strong flavours like goat cheese and bacon, but I enjoyed my bacon breakfast sandwich anyway. My day went by, and I was tired early and fled for home once again. I noticed that my mouth was hurting a bit, although I hadn’t developed any mouth sores thankfully – there was just a dull ache in my gums and jaw. And I was more tired than I had been the day before.
Friday, Adam and I had plans to meet at lunch and go for a tour of the TRIUMF Cyclotron at UBC, so I went in to work for the morning. I was noticeably more tired by mid-morning on Friday, and the plugged up ears kicked in and didn’t go away for the majority of the day. By the time we had arrived home after what turned out to be a very long day that included eating at wonderful Burgoo, I was completely exhausted.
Saturday was harder. My energy has hit an all-time low. I honestly can’t remember a time when I felt quite the way I do now; I suppose that’s because I’ve never been here before. I made pancakes and sausages for breakfast, ate with the family, and made my way to the couch where I lounged until it was time for a children’s birthday party.
The birthday party was easier than it could have been. I played wallflower and sat on the floor while Adam chased Pandra around and Lyra played along with the party games. It felt a little weird for me, though. Parties are already awkward and strange, and feeling listless doesn’t help so much. I was beyond the point of feeling like the stealth cancer girl anymore.
At home in the afternoon, I lounged on the couch some more while my children ran amok. It was beyond exhausting, so that was about all I managed for the rest of the day.
That was the first time, really, that I felt like things were difficult… that I really felt the potential for this process to become a challenge. Finally, everything had started to feel really hard. I was sluggish and and tired, and I didn’t care if anyone could tell. I didn’t have even have the energy to feel guilty about Adam single-parenting our kids for much of the day. At some point it just doesn’t have any impact anymore.
Fortunately, I feel a lot better today than yesterday. The underlying exhaustion hasn’t gone away, but spending much of yesterday resting means that today I don’t feel as immediately wrecked as before.
This is a good thing, because this afternoon we’re going to have a party and shave my head before the hair starts falling out on its own in clumps. I have a lot of hair, and it is very thick. I’d rather it not clog my drains… plus, I have always wanted a good excuse to shave my head, but I’ve never had the nerve to follow through.
I like throwing parties. They are generally haphazardly planned, often without much lead time for guests, and they always seem like they could easily be a huge failure. Somehow, though, things work out in my favour: people show up, and there’s enough food and drinks, and everybody has a good time. I take the ‘if you build it, they will come’ approach, and so far it hasn’t steered me wrong.
That’s what today is. I’ve invited random people (and probably forgotten some, oops) and said ‘just show up and bring some food, or don’t bring food, it’ll be fine.’ My head will be shaved by whomever wishes to make the attempt (multiple times, maybe) and if anyone else feels like shaving their heads they can (although that’s not the point).
We’re getting together to celebrate. I won’t let a bit of chemotherapy and cancer prevent me from having a good party with my friends. Moping about never solved anything.
Monday morning started off the way most Mondays do: getting the kids up earlier than they want us to, feeding them, packing them up for daycare/school, and heading out the door to deliver them. But instead of going to work, Adam and I got some breakfast with coffee and headed to the hospital for my first chemotherapy treatment.
While I’ve read plenty about chemotherapy and the drugs involved, and was sent this great post about what it’s really like to get chemotherapy, I had some vague trepidation about the process itself. Knowing on paper what’s to come and actually experiencing it are two different things. Having already gone through a false start to chemotherapy last week, I had already gone through a few nights of restless sleep and anxiety. Last night it took me a little longer than usual to fall asleep, but it wasn’t too bad, and once I get to sleep I was good for the night.
About an hour before chemo was due to start, I took the first of my arsenal of anti-nausea drugs – a fancy expensive drug called Emend.
At the hospital, I headed first to the lab to do some bloodwork. They need to check my blood counts before I go to the cancer centre for chemo: they check the red blood cells for signs of anemia (low iron), check the platelet count (platelets make my blood clot, which is handy), and white blood cells to make sure I’m not at a high risk of infection from low white blood cell count.
After that was done I walked over to the Cancer Centre, where I’m supposed to weigh myself and hand it in to the pharmacist. Having worked in a couple of food production factories, I already know how to tare (or zero) a scale, so it’s not really a tough job. The pharmacist makes sure my weight hasn’t changed and gets the drug dosages ready for my chemotherapy treatment.
Lily, a friendly chemo nurse, sat down and gave me a warmed flannel blanket so I could settle into my very comfy chair. She hands me four pills — two more of the anti-nausea drugs. Ondansetron (aka the electronic music robot reindeer that pulls Santa’s sleigh?) is a receptor antagonist that helps fights nausea by reducing the effects of seratonin, although I don’t entirely know how it does this. I’m sure it’s pretty badass about it though. The other is Dexamethasone — a steroid. I haven’t figured out how this one fights nausea, so maybe it’s for something else.
She then looked for a good vein to put in my IV, and was not impressed with her options. I’ve been through a lot of bloodwork, and I can attest to this: my veins aren’t so keen on complying. She put her IV into my left arm first, but the vein collapsed in on itself and said ‘NOPE’. Attempt No. 2 on the right wrist was more successful, but only slightly. So we discussed the idea of putting in a mediport (let’s just call it a port like everyone else does), which seems like a good idea to me.
I might be set up with a port in time for my next treatment, or I might not. Adam and I figure we can use it not just for chemo, but also for food, coffee drip, an audio input, and a direct fibre-optic connection to the internet. I’ll be going cyberpunk. What’s another teeny surgery on top of the rest, if it’s going to make life easier overall? Also, Cyberpunk!
ABVD: The Hodgkins Lymphoma treatment
I’m going to go over the chemo drugs I get, but please note: I am not a doctor, and this is not medical advice. This is my understanding (very simplified) of what these are and how they work. If you want to know real information, do some proper research and talk to a doctor.
A is for Adriamycin
With the IV in and the saline drip making my arm feel cold from the inside, nurse Lily brought over the first of my chemo drugs: Adriamycin.
Adriamycin is bright red, which has spawned the lovely nickname of the red devil. It’s given via a huge syringe over a span of a few minutes. The nurse plugged the syringe into my IV drip and sat there adding it, bit by bit, until the huge syringe was gone. Side effects of this one include pee turning neon pink, mouth sores, and hair loss. Oh, and nausea. And if you get it on your skin, it actively burns you. If it goes into your veins too quickly without diluting well enough, it burns your veins. Unpleasant stuff, the red devil.
The drug is also called Doxorubicin; Adriamycin is a brand name. It’s a drug that comes from bacteria found in dirt. They found some soil-based microbes in an area surrounding a 13th-century castle in Italy near the Adriatic Sea, studied it for years, and discovered that it was effective against tumours I honestly couldn’t make this up. Years of study and modification have made it less toxic (although still kind of toxic, especially to the heart). But don’t worry folks, it’s natural! Just don’t read the adverse effects on the wikipedia entry about it unless you feel like scaring yourself some.
I like to think of these drugs as itty bitty anti-cancer super-soldiers. In the arsenal, Adriamycin is a massive shirtless behemoth of a hairless monster-man hybrid with a glowing red sword. He looks scary, but he’s almost all talk — when he swings that sword and hollers at the cells, their DNA panics, gets distracted, and forgets how to divide and reproduce when it’s supposed to. Unfortunately, he’s kind of a douchebag and he scares a lot of other cells too. And everybody wishes he would put some clothes on over that loincloth he’s wearing…
B is for Bleomycin
The next drug Lily brought over to me was Bleomycin. This one is an antitumor antibiotic, and it’s made out of a naturally occurring soil fungus. I am not joking, it’s another natural drug. Who knew that dirt was so full of curative properties? No wonder I let my kids play in it!
Its side-effects include some scary things like pulmonary fibrosis and impaired lung functions (it is suggested that I no longer go Scuba diving or climb mount Everest), fever, hair loss and mouth sores again, and poor appetite and weight loss.
Similarly to Adriamycin, this drug works by making the cells forget how to divide and copy themselves. In the super-soldier army, Bleomycin likes to hang out with his good buddy Adriamycin. I imagine him to be a little like Chester to Adriamycin’s Spike, although that doesn’t mean they actually work together or anything.
Chester isn’t as big and scary as Spike, but he’s kind of distracting and annoying, so once again the cells forget what they’re doing and don’t multiply. Bleomycin irritates the cells so much that they give up and perform seppuku.
V is for Vinblastine
This is the first of my anti-cancer drugs that does not come from dirt. Instead, Vinblastine is classified as a plant alkaloid, which means it’s made from plants. It’s made from four separate plants: the periwinkle plant, bark of the Pacific Yew tree, the May Apple plant, and the Asian “Happy Tree”.
It was administered by hooking up a bagful of it to my IV line and letting it slowly drip into me.
I imagine Vinblastine as Audrey II from Little Shop of Horrors. FEED ME SEYMOUR! I envision many tiny Audreys running through my veins, screaming at my cancer cells and eating them up. Not because it’s accurate, but because it’s fun. Vinblastine inhibits the microtubule structures within the cells, which prevents them from dividing and replicating themselves, which ultimately kills them.
D is for Dacarbazine
Dacarbazine seems to be a strictly chemical drug — there are no castles, dirt, or plants involved, as far as I’ve read. There was research done in Alabama, and that research produced Dacarbazine. It also works differently from the other three drugs, by destroying cancer cells during their resting phase rather than during the dividing phases. It’s known as an alkylating agent.
Lily attached the bag of Dacarbazine to my IV and set it to drip into me for about 45 minutes or so. When I commented that my arm was aching a bit from it, she added more saline to dilute it as it went in, and extended the amount of time it was going to take. This is another drug that burns your skin and veins if it’s not well diluted. As of today, I have no pain from the injection site or up my arm, so I think it was diluted enough, thankfully.
Side-effects again include hair loss and nausea, as well as low blood counts (anemia) poor appetite, and elevation of blood liver enzymes. It can also sometimes cause flu-like symptoms and numbness or tingling in the hands or feet, although this is less often.
Dacarbazine is the ninja in my mighty army. While the other guys are attacking my cells head-on when they’re awake and trying hard to multiply, Dacarbazine is sneaking in under the cover of darkness, taking them out silently as they try to sleep. You never see Dacarbazine coming; silent but deadly. Unfortunately it also attacks all your fast-growing cells indiscriminately, so it has very poor eyesight. A blind ninja. But still deadly!
Talking with the dietician
During the chemo treatment, a dietician came by to go over my weight loss last year (making sure, once more, that it was good, healthy weight loss) and to discuss my diet. I need to increase my protein intake while I’m on chemotherapy — it helps fight off infections and the like. I should be able to handle that. She recommended lots of goat cheese. I can definitely handle that. And I have to eat lots of fibre, because some of the drugs can stop you up right good. Duly noted; I’d like to avoid that.
What’s next for me?
I came home from chemo yesterday and had lunch at the local vegan restaurant of tasty goodness, Chomp. Food will start tasting weird and flavourless soon, so I want to enjoy what I can now until this experience is done.
I spent the rest of yesterday relaxing. I had some mild nausea in the evening, so I took one of my additional anti-nausea drugs to help control it. This one is an anti-psychotic called Prochlorperazine, generally used to treat anxiety, tension, and delusion, which also happens to control nausea. It was helpful, but I only need to take that one on an as-required basis, so I’m not going to rely on it too heavily if I don’t feel bad.
By the time we were putting the girls to bed I was already quite tired. Once the girls were both down I started writing about the day. By the time I was half-way through my writing, I realized my brain was getting muddier and fuzzier, and I couldn’t focus. I was also having some trouble typing accurately, which made me crazy, so I decided to quit for the night and continue in the morning. I was in bed early and fell asleep pretty quickly.
Today I’m taking it easy at home, gauging how I feel and how controlled the drugs are keeping my nausea. It’s been good. I’m a little brain-fuzzed, but functional, and the nausea is under control. I just feel a bit off and muddled, otherwise.
I’m going to go out to run a couple of easy errands with Adam and see how that goes; if it’s all right, I may go in to the office tomorrow for part of the day at least — I don’t want to get stir-crazy at home if I can help it.
My hair won’t fall out for another week or two, so this weekend I’m going to have a head-shaving party. Come on out for the fun! Head-shaving is optional — I’m going to do my head, but you don’t have to.
The next chemotherapy session is in two weeks. But this time I’ll know what to expect, and it will be easier on my system, I’m told.