After chemotherapy ends: Where’s the kaboom?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

PET Scans, ports, and nearing the end of treatment

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!

Medi-port installation
My port incisions. The bumpy bit below the lower incision is where the port resides under my skin. Cool, eh?

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.

Sometimes things get hard to deal with

Lyra and Adam at my chemo
It was nice to have my family hang out with me during chemo.

The last two weeks have been, to say the least, extra challenging. I don’t think I’ve ever felt so keenly the gap in our lives that exists because our extended family is four provinces and three time zones away.

Before chemo on the second of December, I could feel dread growing. In the words of the tenth Doctor, I did not want to go, and the sense of impending badness kept building. But I did go, of course, and Adam and Lyra both accompanied me. Lyra was curious about it, and I wanted to demystify the process a bit for her, so she came along and watched, and learned, and played with Adam while I sat in my chemo chair and felt my thought processes slow to a crawl. It was nice to have her there; but it was still the worst chemo session I had been through to date.

We went back home, and I proceeded to feel exhausted and awful for a couple of days. The highlight of the week was my work Christmas Party on Friday the 6th — you can’t not have fun at a 20s Murder Mystery. Adam and I were grateful for a night out without the girls, and we both had a good time.

On Saturday, things started to go downhill. I hit my lowest energy point in the cycle, and could barely find the energy to get up off the couch. I let Adam sleep as much as I could, so he could recover from the party, and played games and watched movies with the girls. And I ordered groceries online for delivery the next day, because we were running out of food and nobody had the energy to get to the grocery store.

Sunday morning the groceries arrived, and Adam took Lyra out for an Adventure Day at the Vancouver Aquarium while Pandra and I stayed home. My energy was still very low, but I could manage chasing a toddler around for the day in the house, even if she was a bit cranky. I basically didn’t leave the house from Friday night after the party until Monday morning, though, and it was not good for my health.

Chemo cycles and emotional well-being

I have discovered, after three hits of chemotherapy, that I have a definite mental health cycle that comes with it. I get distracted and start to dread going in for chemo a few days before I’m due for the next session — and it stresses me out. Right after chemo, I feel dopey, slow, and stupid which mostly just frustrates me and makes me a bit angry. But those low energy days that fall on the weekend after my chemo? Those are the worst.

Those two days become a strange emotional feedback loop. I don’t have any energy to do anything, so I sit on the couch and rest. This gets boring fast. Once I’m bored, I start to feel unhappy, and I know it’s because I’m bored. I try to think of something to do, and get overwhelmed at the thought of it, so I don’t do anything, and then I start to feel depressed because I am bored. And once I’m depressed about being bored, I get more bored and frustrated. And then I start to look for people outside of myself to talk to, preferably in person. Except that it’s the weekend, and it’s December, so everyone I know is exceedingly busy doing family/holiday things, and they don’t have time to just show up at my house for a cup of tea or to hang out for hours with no real purpose. So I feel more lonely, and send out a sad, basically pointless call on various communications channels for someone — anyone — to come visit me. i know it’s pointless, because those vague requests for visits have never successfully attracted a visitor. And then I feel sorry for myself on top of the bored depressed inertia.

I don’t like feeling sorry for myself, but once I’m there, it’s really hard to feel better. I start feeling worse about everything that crosses my mind. I have trouble imagining when chemo will be over and remembering how it feels to not feel as bad as I do at my lowest point, and it’s painful and demoralizing. I look at my daughters and wonder where I’ll find the energy to play with them, because there is no reserve left. I think about how it’ll feel to be able to think straight and write clearly and hold a fork without shaking again, and I get frustrated that everyday things are so hard.

All of this was weighing on me heavily. And then I started to think about Christmas.

I love Christmas usually. This year, though, it’s complicated. Mostly because of the cancer thing.

They’ve finally scheduled my IV port surgery. The original requisition got lost somewhere, so the hospital never called me. I was suspicious about that. Once they realized it had be lost, my doctor resubmitted a requisition and I heard back within a couple of days when my surgery was booked for: the morning of December 24th.

I’m looking forward to having the port for chemo, especially after my last session. My arm felt like it was burning for a week or more, and the chemo took an extra two hours just for the one drug that burns my arm, because they had to dilute it with lots of saline and then slow down my intake of it. I have crappy veins and I’m sensitive to the Dacarbazine. The port will make it better.

But I really don’t want to have surgery the day before Christmas. It’s a fact, and it can’t be moved up (my doctor apparently tried, but no luck). I don’t want to be sedated on Christmas eve. I don’t want to be recovering on Christmas day. And I didn’t really want my next chemo session (December 16th) to be without a port. All of these things added to my general unhappiness over the past couple of weeks. And then five days after Christmas I’m back in chemo. And I won’t see much of my friends because they’ll all be busy with family, and our extended family other than Adam’s brother is all in Ontario. I’ll be too tired or in recovery to do anything fun. I want to make the best of Christmas… but it’s hard, and thinking about it just makes me kind of depressed.

So this was all on my mind over my lowest point in my cycle, when I am most prone to loneliness, depression, and feeling weak and useless.

And then Pandra got a fever.

She had a cold already. But sometime over the weekend, a fever developed, and she was absolutely miserable. She started waking up and not being able to go back to sleep because of the discomfort, and Adam was the only one who could take care of her. He took Monday off so he could do just that, since I need to avoid illnesses that include fevers. And then she was the same (or worse) on Monday night. And through Tuesday. Adam took her in to the doctor’s office, where they found that she had an ear infection in both ears. Her inability to sleep, and her obvious ongoing pain, became much clearer. Wednesday, she seemed to be feeling a lot better, and we were relieved to be thinking about sending her back to daycare on Thursday morning. But then Wednesday night her fever came back, and she spent more of the night awake than she did asleep.

Five days straight, Adam had to get up multiple times in the middle of the night, for hours at a time sometimes, to take care of a baby, and then miss work the next day to take care of a baby. If I could have taken over, if I had been allowed to, I would have in a second; the feeling of utter helplessness while I watched her feel so much pain, on top of coughing and crankiness and exhaustion, and not being able to cuddle with her or do much of anything to make her feel better… it just broke my heart. And watching Adam take on all that responsibility, and get more and more exhausted and delirious with lack of sleep, was beyond frustrating. There’s only so much SuperDad the world can ask from one person, and he was getting close to a breakdown. It got tense.

This is Pandra demanding that Adam get her dressed and take her out of the house. She was persistent.
This is Pandra demanding that Adam get her dressed and take her out of the house. She was persistent.

We kept her home on Thursday as well, and she slept some during the day. The antibiotics for the ear infections seemed to finally be working, and she was feeling better. Pandra hadn’t left the house since Friday of last week, and Adam hadn’t been out since Sunday — they were both going stir crazy. She finally bullied Adam into taking her out for a walk. She was feeling pretty much normal (if exhausted) by the end of today, and there was finally no sign of a fever. But Adam has already missed four days of work and his office Christmas party. We are hoping beyond hope that Pandra sleeps through tonight, and there is absolutely no fever to be found. And I’ve managed to catch Pandra’s cold (although not the fever) even though we tried so hard to avoid it.

So now I’m out of the depression phase, but I’ve got a cold, and I’m grumpy, and I’m starting to count down the days to my next chemo session with a growing sense of unease. Adam is exhausted and grumpy. Pandra is getting better. And Lyra just keeps on keeping on. Our friends are going above and beyond, doing things like bringing us dinner and delivering groceries when we need them. They are all beautiful people who we love dearly.

But I have to admit that this week is one of the times I’ve felt like having family nearby — family that could take Pandra overnight, or help us take care of her when she’s sick occasionally so Adam doesn’t have to miss so much work when I can’t pick up the parenting slack, or sleep over at our house for a day or two so we can escape to a hotel room and get a solid night of sleep alone — would make a world of difference. Usually we make things work. And we will get through this rough patch, too, with the support of our friends. But so much pain could have been alleviated with the help of someone who could make that extra commitment that you can only ask of family.

Most of the time I can accept that this is not something that we have access to. But this week, it’s been hard.

And life goes on.

Uncomfortable truths: Side effects of chemotherapy

I’ve been keeping track of my chemotherapy side-effects as much as I can, because I like to document everything, and because I know I won’t remember it all when it’s over. Most of them are as expected — fatigue, feeling nauseous, not being able to taste things. I’ve had it fairly easy, on the scale of crappy chemo side effects. But that isn’t to say that it’s been a breeze.

Some of the side effects of the drugs I’m on are what one might call “safe for public consumption’ — as in, talking about them doesn’t really make anyone uncomfortable. But there are others that aren’t so pleasant to talk about or hear about. I’m not willing to censor for myself for the squeamish, however, so if you’re reading this and don’t want to know the uncomfortable truths about my body while it goes through chemo, you may wish to stop reading now. Not that all of these will make you uncomfortable, or maybe not any of them… just be aware that some of them might be what you’d consider Too Much Information.

Things just aren’t quite right

The first set of side effects are the ones that just make everything strange. Included in this category is my newly discovered sense of taste: or rather, the lack thereof. I can’t taste much anymore. It seems that sweet has become just plain disgusting, so I don’t eat many sweet things these days. I put vinegar on french fries with lunch the other day and I couldn’t taste the vinegar; added more, to no avail. Sour is gone too. Foods that used to have a pleasant flavour are either bland or gross, and foods with an unpleasant texture and no flavour are an entirely new experience. I used to eat oat bars from Starbucks as an occasional treat; they are now flavourless mushy piece of damp cardboard. A turkey burger was a dry piece of cardboard surrounded by squishy flavourless goo and a mushy bun. Texture has become an important factor in my food choices. Crispy, crunchy, multi-textured foods are good. Lemon ginger tea tasted exactly like hot water. Mushy, squishy, gooey, or overly dry foods are not. I can still taste spicy things, so I put sriracha on almost everything I make at home. And I can also taste peppermint, which I don’t even like but have started drinking the tea anyway, and salt. Food is an entirely new experience.

Another weird side effect that’s more annoying than bad is what I’m starting to think of as my chemo face mask. I find it very hard to explain to people, and I’ve tried various methods of doing so, but I don’t know if it’s made sense. From time to time (usually at least once a day, sometimes for hours, sometimes for less time) my face starts to feel thick. It’s a bit like if I was having an allergic reaction to something on my skin – no hives or burning sensation, just a feeling of thick, almost-but-not-really tingling of the face. It feels a bit like it’s swelling, but that isn’t what’s happening at all. As far as I can tell there is no physical reaction that’s happening — there is no swelling, no rash, and nothing looks abnormal. It just feels very, very strange… and thick. Like I’m wearing an invisible mask over my face. It is annoying.

And of course, there’s the infamous chemo brain. It’s a bit like baby brain — if you’re a parent, you may know what I’m talking about. For me, chemo brain seems to attack my communication centres the hardest. I lose the ability to type coherently. I forget simple words. I can’t string a proper sentence together effectively when I talk. My writing suffers. My short-term memory completely disappears, to the point that I need to take notes during a conversation with someone to make sure I know what they were talking about ten seconds after the conversation ends. I have to push myself to listen properly; my mind wanders very easily, and I lose focus completely on everything. And I forget important things, and little things. It’s frustrating — especially when communication is one of those things I like to think I’m good at.

Minor physical issues

I’ve had a few physical side-effects from the chemotherapy that aren’t really a big deal, but are worth noting. I’ve had some neck and back pain. My skin is exceptionally dry. My throat is dry, and I’ve had some phlegmy crud in my nose for a week. I get exceptionally tired every day around 2pm. My IV arm aches dully on occasion. My face is flushed and warm for the first four days after chemo. My fatigue has a definite cycle — I’m at my lowest energy level on the fifth and sixth days after chemo, and then I start to regain a sense of near-normalcy.

Fatigue is insidious and evil

My lowest-energy days fall on the Saturday and Sunday after Monday’s chemotherapy sessions. In a way, this is good, because I can just be at home. In a way it is also bad, because I am at home, but so are my children and husband, and the girls especially want me to do things with them. It’s a challenge. By the end of the day this past Saturday, I was so tired that I couldn’t think. While putting the toddler to bed, I had my first wave of fatigue-induced despair. I started to think about how exhausted I was at that moment, and how wrong and unhealthy I felt, and it overwhelmed me. I stood next to Pandra’s bed, looking down at her before turning out the light, and wondered how I was going to get through months of feeling like this. It upset me that I didn’t have the energy to play with her or Lyra all day, and that I was so tired I couldn’t stay on-key while singing to her. It isn’t fair to them, and it isn’t fair to Adam to have to pick up so much slack in the parenting and household-running departments.

I had to take a few minutes to let that despair wash over me, to let myself feel that frustration and sadness, because if I block it out it comes back stronger, harder, with a sharper edge. And then I carried on doing the things that had to be done, and I spent Sunday relaxing with my family, and by Monday morning I felt like myself again. I’m right — this isn’t fair. But it’s what we have to work with right now, so we will make it work.

Ah, the lovely digestive system

I’ve been lucky. I haven’t had the nausea and puking that many people seem to go through with chemotherapy. My anti-nausea drugs are doing a fine job of managing all that on my behalf. The closest I’ve come is an occasional dizzy spell and bouts of vertigo when I watch things move past me. This week I’ve had some stomach issues that manifest as queasiness that feels like hunger, or hunger that feels like queasiness. I can’t tell which it is, so I eat something and feel better for a while, until it comes back. That seems to be working, so I’ll stick with it. I’ve gained weight though, which is the opposite of normal for chemo patients, from my understanding. Not a lot… just a bit.

The drugs have, however, made me a bit constipated. I’ve been taking senna laxatives daily on the advice of the doctor and pharmacist, which has been working well, but there are evenings when either I forget to take them or irrationally think that I’m doing fine and don’t need to take them that night. This always ends badly. No matter how tired I am when I have crawled into bed and then realized that I forgot to take them, I really must get myself back up for them. Otherwise, the entire next day I feel crampy, bloated, and just plain bad in the lower abdominal region. It’s not the greatest of feelings. Oh yeah, and I get kind of gassy. Good times!

On the other side of it, when I do remember to take them, it means when I have to go, I have to go right now, or else bad things might happen. I’m learning the signs, and making sure I’m near a washroom when I need it. I would really prefer not to soil myself in public, thank you very much.

Anemia and girl problems

I was warned about anemia (low red blood cell count), and told to increase my protein. I’ve been doing so pretty effectively, but anemia has still been a bit of an issue. I notice it most when I wait too long between meals, or when I eat a meal that has too little protein in it. I start to get shaky and more hangry than I normally get (which is pretty hangry). I do my best to manage it, and I think I’m doing okay so far.

My period started the day after my last chemo treatment. It was considerably lower volume than normal, especially on the first couple of days. It stayed fairly light for the duration, and was generally less intrusive than it normally is, although I still got crampy and cranky for a couple of days. So there was an effect, but it wasn’t terrible.

Energy and activity

Jenny and friends running
I guess I can still run 5k…

Because my energy is pretty low for the first week and a couple of days after chemo, I don’t get much activity in. I felt overwhelmed by my lack of DOING, so by the end of my two-week cycle, when I started to feel normal again, I crammed as much activity into my two weekend-days before my next chemo treatment. On Saturday I went for a hike with Adam up the mountain by our house, and it was lovely. On Sunday I went for a 5k run with Adam and our friend Maryn, which felt really good (hooray for weekends with babysitting!) then came back home to get the girls and go out for a walk in the woods at dusk.

It was lovely to get out so much on the weekend, but when we got into the car to head home, all I could think about was how much I was dreading going back in for chemo the next morning. I did not want to go. But go I did, to begin the cycle anew. It’s going to be like this for a few more months. I can handle it if I know what’s coming. I expect it will continue to have ups and downs. So does everything in life.

Yesterday was my chemo day again. It was not fun, and I could feel my ability to think and communicate draining away from me as I got pumped full of the chemo drugs. It was hard. But today I feel a bit better, and less tired, and I know what I”m in for over the next two weeks.

Working through chemotherapy

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

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

I have some good reasons:

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

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

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

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

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

Riding my bike to conquer cancer

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

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

The Ride

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

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

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

So I said yes.

BC Ride to Conquer Cancer

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

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

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

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

I’ve always wanted to shave my head…

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

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

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

Let’s shave Jenny’s head!

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

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

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

The thing about hair…

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

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

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

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

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

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

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


After chemotherapy: A week on

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

But let’s back up a bit.

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

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

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

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

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

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

Approaching limits

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

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

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

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

Sunday fun

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

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

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

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

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

Of course there will be photos.

A day in the life of a chemotherapy patient

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

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

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

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

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

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

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

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

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

ABVD: The Hodgkins Lymphoma treatment

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

A is for Adriamycin

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

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

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

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

B is for Bleomycin

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

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

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

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

V is for Vinblastine

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

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

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

D is for Dacarbazine

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

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

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

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

Talking with the dietician

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

What’s next for me?

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

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

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

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

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

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

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

And life goes on.

Staging my cancer and working out my chemotherapy treatment schedule

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

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

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

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

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

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

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

Chemotherapy details

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

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

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

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

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

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

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