Balance (it’s what you get)

So last week I got the results from my first CT scan since starting the trial. After one and a half cycles (a cycle is 28 days) my tumours had shrunk 45 percent and (even more significantly at the moment) the fluid in my abdomen caused by the tumours (I call it cancer juice, its proper name is ascites) had markedly disappeared. Only a couple tiny pockets of fluid here and there.

For the first time in a year, treatment finally started working for me in a very measurable and significant way.

There is no measurable narrowing throughout my bowels. My stomach is no longer distended and I can wear normal pants again. There was a pretty significant period of time, particularly at the end of fall/beginning of winter where I couldn’t really wear pants because the fluid in my abdomen made it stick out like I’d gained 15 pounds, even though I hadn’t gained  any weight at all. Certain skirts and dresses were too tight. I spent a lot of time in leggings and dresses with elastic waistbands. Thankfully I work from home.

So it’s working, this treatment, but as with everything, there is a hitch. I developed some kind of throat infection on the weekend. At first, I thought it was just another round of mucositis. Fever, sore throat, small spot in my mouth where a canker was developing. I decided to wait it out through the weekend and see my nurse on Monday in case it was something like strep, instead, which is what it was starting to feel like. But Monday morning I woke up with my throat so swollen, I could barely swallow, and then because I could barely swallow or take in a proper breath, I started gagging, and then I started throwing up, and then I decided that I couldn’t wait until the clinic opened at 9 a.m. because I was convinced I was going to throw up and choke to death on my own vomit, so I went to the ER, where they looked at my throat and said, It’s a little bit red and it might be mucositis, but it isn’t so swollen that you should have trouble swallowing* and they discharged me and I went across the street to PMH to see my nurse and oncologist before going home, and they took one look at my throat and recoiled because it was bright red and covered in pus and it looked so patently like strep throat that obviously they would need to put me on antibiotics.

So back home I went with a prescription for penicillin and orders to continue taking dilaudid to control the pain — dilaudid! For a sore throat! — which I did. It helped, a little. What helped the most was having the fever finally break. Except then I started throwing up again. Have you ever thrown up with strep throat? Really not fun.

Tuesday a doctor called from the ER. My throat swab was negative for strep, but my blood cultures were positive for…something. Probably skin contamination, I said. Probably skin contamination, he said. So I called my nurse again and passed along what he said. And told her that while the fever had broken, I was throwing up constantly and couldn’t hold any fluids down and I had lost 3 pounds over the course of the day and was probably pretty dehydrated, and then my nurse told me that Dr. Siu was worried that this would be the time that the positive culture would actually be Something Significant, and so she wanted me to come back to the hospital, back to the ER where I was to wait until a bed opened up at PMH for me. So I went back to the ER and waited and waited and my pain medication wore off and then I started crying so they put me in a supply cupboard and gave me secret morphine while Kristin, a friend of the newish variety, ran around town trying to buy me a type of Gatorade that doesn’t exist. (Don’t worry, she found a substitute.) And then a bed opened up and I was wheeled through the secret underground tunnel from TGH to PMH, where I met my Christine and Dr. Siu and they looked at my throat and pronounced it gross and probably a fungal infection and expressed how weird all my mouth and throat problems are. This has always been the case, even before the cancer, all the way back to since I was a little kid, I said. Dr. Siu said I should get my tonsils out and I told her I’d once planned on it, that I had actually gone in to my doctor to get a referral to an ENT because I’d been developing horrible strep infections every six months like clockwork, and while I was there, I was like, Oh, I should get booked to see my oncologist again, too. It’s been long enough since I last saw her that I need to be re-referred. And so the doctor referred me again, and as we all know, I found out the cancer was back and my tonsils were kind of forgotten about.

Until now.

But it isn’t strep and it probably isn’t just mucositis either, but a combination of thrush and mucositis so I’m gargling with anti-thrush medication and pounding back dilaudid and drinking lots of ice water and taking another little vacation in the hospital. It’s certainly not my favourite place to be, but considering how well the treatment is working right now, I am willing to take this in exchange.

When I saw my psychiatrist last, I hadn’t received my scan results. I knew they were coming and I knew they were likely to show something good. But I was worried, I told him, I’m worried that I won’t be able to just accept good news, that I won’t be able to feel happy about it because I am always waiting for the other shoe to drop because things can’t just be good. And I was kind of right. Good news was followed by a complication, a complication which may end up leading to a change in my dosing in the long run, a complication which has made it so I have to take a chemo break for at least a few days. It’s weirdly kind of relieving. I can relax now without having to run through a bunch of what-if scenarios because I’m in the middle of one. I don’t have to watch my back, the universe has already given me a giant fuck you and I’m okay with that, if only because my pants fit again.


About Alicia Louise

I'm a writer, editor, fact checker, storyteller, events organizer, chronically busy yet endlessly lazy, mildly neurotic (though I keep the neuroses well-hidden, one hopes) 32-year-old with recurrent ovarian cancer. I like people and good writing and straight talk. I have a hard time feeling sorry for people, including myself, but the people that I love, I love passionately; one may even say creepily. I try to keep that mostly to myself. I'd like to be charming, but I'm usually just a mess. I'm like a gull slamming into your windshield.
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8 Responses to Balance (it’s what you get)

  1. Marilla Wex says:

    Hey Alicia – I had no idea you were going through all this. Sending you lots of love. I kinda like the idea of being in a supply cupboard with morphine. There’s something very Harry Potter-esque about it. Hope to see you soon. xoxo

  2. So pleased and damned relieved to read this. Was wondering how you were doing. Sorry about The Throat Thing but having OC 3c myself, the positive scan well, is just so fantastic. Thanks for this post!

    • I was going to do a proper update about the scan results on the weekend, but then I was mooning about with a fever and achy throat, so didn’t have a chance! Fortunately I feel fine, even though my throat is sore. I’m getting pretty good at rolling with the punches, they don’t phase me quite so much these days.

  3. fotogfoodie says:

    It’s so awesome to hear the cancer juice is gone! Can’t tell you how many taps my mom had to go through because there was so much fluid. In the first one they took 4 liters out. I hope you never had to have one again. ever. Also, the 45% shrikage is pretty awesome too! 🙂

  4. Michelle says:

    “Cancer juice” for ascites made me laugh out loud. The shrinkage and less fluid is exciting to hear. But oooooooooouch to your throat stuff. Although I have totally been in the underground tunnel and it’s kind of weird/cool. I hope your tonsils start behaving themselves at some point.

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