This is not to say I didn’t meet interesting people whom I’ve connected with or shared contact information with. But those meetings happened in brief moments at the end of a meal or after a session before we all moved on to the next. If I were to make any suggestion, I would ask for half an hour after sessions and workshops for people to simply hang around and talk. Because it’s hard to track down that one person in the back of the room who said something profound that you want to ask more about when they are rushing off to grab a coffee and get to a conference room on the other side of the building in only 15 minutes.

The sessions were good. The content was interesting, the presenters were dynamic. The session I was most interested in, the one that was added to the schedule after I noticed there wasn’t anything addressing people with metastatic or advanced or incurable cancers on the program, was great but too short at an hour. I could have spent an entire day in sessions and workshops on the topic. It’s the place where you’re mostly likely to find others in clinical trials or doing unconventional treatments, people who also don’t plan for anything beyond three months in the future. It’s an area that is underserved both in research and advocacy, but it’s also an area where more frequently we’ll be seeing people agitating for acknowledgment and better treatment options.

I heard a lot of people this weekend talking about how they didn’t really know what their role was at the conference — do they need the support, should they be supporting, what support do they need? People who are newly diagnosed and in treatment need something other than those recently out of treatment need, who need something different from what people many years out of treatment need, who need something different from what those of us living with cancer as a condition which is not going to go away need. My perfect conference would have sessions on genometrics, on how to access resources and information as a patient, on how to search for clinical trials or how to request compassionate use of a drug, on how to write a will or an advanced directive or plan a funeral. But that really wouldn’t be the conference for the newly “cured”.

I don’t know if I’ll ever go to another cancer conference. I suppose it’ll depend on the topics and where the conference is held. I never need to come back to Vegas ever again. Holding an emotionally fraught conference in a casino is a really terrible idea. It’s smokey, it’s dark, it’s overwhelming, it’s loud — there is no place to escape to, even the pools are loud (well, the one where I am staying is pretty low-key, but there is still a lot of music playing). The only perk is that it is sunny and hot, so if you manage to find a way to spend time outside, it can be pretty nice.

On that note, I’m going to hit the pool.

The funny things about these conferences is that you’re always told that you are going to meet people who really get it, but I don’t, not really, because I am still the motherfucking cancer patient who other cancer patients cluck over because of my terrible situation. (I say this witheringly, not in a woe-is-me way).

Nick though, he and I are anti-establishment, anti-positivity, anti-cheerleader-for-a-disease-that-frankly-sucks-in-more-ways-than-you-will-hopefully-ever-know. We bonded over our vanity too, and being on the prowl for hot gentlemen to figuratively hold our hair back while we non-figuratively vomit from treatment. They really ought to run these conferences the way the Santa Cruz parties were run back in the day. Remember? You could get a black or green badge depending on if you were single or not, and if you were, you had a little note box where people could leave you messages. Cancer conferences should totally have that.

It’s hard to say how I feel here yet. I guess I will know more after I attend some sessions, though I am anticipating skipping tomorrow afternoon sessions to sit by the pool. All I want is to sit beside the pool. Is that too much to ask? It’s the right thing to do in Vegas, right?

The greatest thing about being in Vegas is that I don’t have to think about upcoming CT scans and check ups that I have to jump straight into when I come back to Toronto. The less great but more important thing is networking with other cancer organizations who could do some cross-promotional work with the book, should that be something we see ourselves as wanting to do.

My sleeping pills are kicking in and it feels like the molecules of my body are mixing with the molecules of the bed and I can’t tell where things are beginning and ending so I should stop right here before I write something I a) forget about and b) regret upon its discovery. It wouldn’t be the first time, nor the last.

Oh, one final observation about Vegas that’s a little TMI, so mom and dad and aunties and uncles, stop reading (cousins, you are exempt).

.

.

.

.

.

.

.

.

.

.

.

.

.

There, they should be gone now. I recently talked or maybe demonically demanded I get an estring, basically a flexible rubber ring that you insert in your vagina to deal with post-menopausal issues, and I think it is starting to kick in because I can’t stop checking all men out as though I’m some creepy bro, and thinking, I’d fuck you, I’d fuck you, I’d fuck you and you and you and you, Yeah, I’d even fuck you. The wonders of hormone replacement.

Well, I can see that this will be the forgotten bit of my post tomorrow. Let’s hope my parents didn’t read this and that, if they did, they have the decency to never bring it up. I don’t think I’ll regret this. Who am I kidding, I regret nothing. I lack the shame gene or something. So from Las Vegas, I bid you adieu.

He tells me that I am more flexible and resistant. That I’ve learned something about the world that many if not most of his patients never achieve. I don’t know what it is. Complacency? Calm? I should ask him.

Working distracts, writing sublimates.

We’ve talked for a year about learning to die. Now he says we are dealing with how to live. In some ways I prefer the first year’s course matter. I’m not prepared to talk about what thrums through my brain, through my body all the time. My obsessions and shortcomings are embarrassing and I don’t know why I can’t be resilient and simply deal with them.

Instead I distract and sublimate.

I know he knows it. I can tell he knows when he looks at me but I can’t bring my eyes up, or when I glance away when our eyes meet. He has said to me more than once, I feel you want to say something, but the words just stay caught in my throat. I glance up, cast my eyes down, shrug my shoulders. I don’t know, I say, I just can’t…

I want to be the type of person who simply takes what they want and lives free of regret, but you can’t take what you want just because you want it.

I’ve spent so much time trying to figure out what it means to be faced with an incurable disease that I’ve forgotten that, for the time being, I’m living with a controlled disease which means I have to focus on living, whatever that means to me.

I’m leaving for the OMG Summit for young adults with cancer tomorrow. I’ll be in Vegas for a week, hopefully not crying my face off the entire time. Being around that many cancer-affected people is a real soul-crushing bummer sometimes.

In the meantime, if you haven’t read it already, I suggest you read this excerpt of an essay I wrote for Little Brother Magazine which ran on Joyland. Then you should subscribe to the magazine so you can find out how it ends.

I’m beginning active treatment again on Thursday. Technically, this is the start of my fourth cycle, though I’ve only actually completed one and a half cycles in total, plus one random week which counted as part of cycle three, I think. With the exception of that week, I’ve been out of treatment since February 24th. It doesn’t feel like that long, I suppose because I spent so much of that time in hospital being treated for acute infections. March is a blur, it barely exists for me. And yet it’s so cold, I feel as though it didn’t even happen. It feels like winter still, and I don’t really believe that almost an entire month went by without me.

In some ways, it feels like everything was suspended and no time really passed at all. I had a CT scan last week and it was completely unchanged from the scan I had in February. Everything on hold. It makes me wonder what to expect once I start treatment again — will the holding pattern continue? Will I start getting better again?

I have a hard time thinking about the future. I don’t really believe in it. Maybe this doesn’t make sense. I’m not sure how to explain it. I guess I just don’t believe in a future that can even remotely resemble anything I could imagine the future to look like. I remember talking to my psychiatrist in January, proudly telling him how I’d booked a trip to New York at the end of March. It was the first time in three years that I’d booked a flight more than six weeks in advance. I felt like I’d really accomplished something. And then everything fell apart and I couldn’t go to New York and I just felt stupid for thinking I could do something as simple as make plans.

I read an article in this week’s NY Times Magazine about this guy, Adam Grant, who is notorious for helping anyone who asks for help, and is one of the most prolific and efficient academics in the field of organizational psychology. It’s an interesting read, but there was a part that stood out for me, where the author talks about Grant’s death anxiety, and Grant essentially says something like, idleness gives way to anxiety, so to avoid the panic attacks that can accompany existential musings on mortality, he essentially just keeps busy. I think he refers to a friend saying he has productive OCD, which made me laugh because my psychiatrist told me exactly the same thing two weeks ago. (Actually, what he said was, your need to work and organize and keep busy is kind of OCD, and I don’t mean that in a bad way, just that you keep yourself distracted from dwelling on your disease and mortality by constantly doing things) and I kind of laughed, but I guess it’s true. When you have a constant reminder that you won’t be around forever, it suddenly seems more important to get things done.

It’s strange though, and maybe I’m just feeling this more acutely than normal because I’ve had to give up my antidepressants while on this antibiotic, but I get fixated on things, and when certain ideas enter my mind, I just can’t let them go. Like, my dog is old and the last time I was at the vet with her, we chatted about how she was doing for a dog her breed and age, and he said she was doing really well and could easily have another two years or so in her, but that it’s hard to tell with old dogs because they can get very sick very quickly, and decline is often rapid in old dogs. And every time I go to the hospital, I get insanely anxious about my dog and how old she is and various ailments she has or has had, and whether I’ll get another dog after she’s gone, or if I should get another dog before she dies so she can help train a younger dog and so I won’t feel completely bereft when she actually does die, and this time I started looking at adoptable dogs on Pet Finder and saw one who was perfect and I fell in love with him and decided I had to ask about him. He was already adopted, but the thought of Salome getting old and dying wouldn’t go away and now my anxiety about that is through the roof and I have convinced myself that I need to adopt another dog this summer so I won’t be left alone when Salome dies.

Reading back on that, it occurs to me that maybe being off my antidepressants/anti-anxiety medication is affecting me more than I realize, and maybe it’s a little strange to view your pet as a memento mori. At any rate, I won’t be making any dog adoption decisions until I’m fully medicated again.

I titled this entry “Where all the things are at” but I don’t know if I really answered that. Things are where they always seem to be, up in the air, spinning madly. It somehow feels surprising to me, but the truth is, this has been my life for the last three years. Things happen, there are shifts and changes, yet I always feel like in the middle of something. The only problem is, I don’t know what I’m in the middle of — ascending or descending. I don’t even know if it matters.

After that, I will have to continue i.v. antibiotics for another one or two days. Some people have said one, some people have said two, yet others have said one or two. The bacteria I have is close to resistant to vancomycin, the antibiotic I currently am on. Until yesterday, my oncologist thought that was the only antibiotic it responded to because that was what was stated on the report written after the cultures were grown. Turns out there is an oral antibiotic that is so new it is not even listed in many of the places doctors would go to look at lists of antibiotics and it has been referred to by my Infectious Disease doctors as The Most Powerful Antibiotic in the World. They like to use it sparingly, and at $700 a pop, it probably isn’t hard to make that decision. Thank the gods for my excellent drug coverage.

I jokingly said to my oncologist when she told me about this brand new ultrastrong antibiotic that maybe I should take the first dose in the hospital and she seriously replied, That’s a good idea, which is how I unintentionally may have moved my going home date from Thursday to Friday. I’d feel cross about that if it wasn’t for the fact that if anyone was going to have an allergic reaction to this drug (and there are already a bunch of adverse reactions we already have to look out for) it would be me. I’m not superstitious, but saying that still makes me feel a little bit like I’m inviting the devil in.

I know that it’s just Pavlovian training. I have absolutely no expectations that anything will ever happen in an uncomplicated manner. It’s probably what has kept me from crumpling into a nervous ball of incapacitating tears and anxiety over the last couple of months. Nearly every step in my treatment over the last year has been riddled with complication and upset. You come to expect it. How could you not?

That said, it looks like I will most likely be able to continue the trial as my doctors can argue that my problems did not stem from the trial drugs themselves, but from an improperly treated infection. So that’s good news. However, I think I’ll hold off on celebratory dancing until I’m back to popping those pills.

This most recent hospitalization is/was particularly stressful. There have been issues with the trial drugs — the oncologists thought my third cycle started when I began treatment again after the last round of infection, while the sponsors considered the cycle to never have stopped, so I was dosed on the wrong day and had to have a week held and blood tests done on a day I wasn’t supposed to have them, according to the doctors, and it’s all very confusing and in all of this my blood pressure was too high despite medication and I had to hold off on taking the MEK inhibitor (my daily oral chemo) while my dosage was changed and my blood pressure returned to normal.

Basically, what this all means is that despite my strong response to the trial, the sponsors could decide that it is too dangerous for me to continue, or that I’ve started and stopped too many times to give them adequate data, and I could be kicked out. I’m sure I don’t have to explain that that would be a very bad thing.

Fortunately (it is a grotesque word to use, considering the situation), it seems that the infection stems from my portacath, aka the line that runs through a vein and stops just above my heart, and through which chemo is administered and blood is drawn. This is fortunate because I had a documented line infection the last time I was in the hospital and the oncologists can argue to the sponsors that I had an inadequately treated infection, and thus the trial drugs are not the cause of all these problems, and I can potentially continue the trial.

Unfortunately, this means my line has to be removed and I have to complete another round of antibiotics, and have all my blood draws/infusions done peripherally, that is, through veins in my arm, which is not an easy feat to perform on me. And another two days, at least, in the hospital, though I might gun for a pass to the outside world again since this time I’m not desperately ill and my doctors might be more accommodating of my desire to spend time somewhere that is not here.

I’m being rather matter-of-fact about the whole situation. I know the worst case scenario (being kicked out of the trial) and the best case (staying on the trial). I know there is absolutely nothing I can do to sway the outcome, so I’m trying to keep it from unraveling me. Three months ago, this would have undone me. But now…my psychiatrist says I’m becoming more flexible. Maybe that’s the case, or maybe because I know this drug is working for me, I feel like the sponsors will do all they can to keep me on the trial, and if they won’t or can’t, I can find another trial that will take me, or maybe I’m just so used to incredibly bizarre and shitty things happening that nothing surprises me anymore, which is kind of a nice thing, not to be feeling so much turmoil, but is also not exactly a nice thing, not to be feeling so much of anything about this. Sometimes it’s hard to tell the difference between apathy and keeping calm.

Appropriate that I’m in the hospital today.

Whenever someone tries to help her, she says, No, I am strong, independent woman. She does everything for herself because when people try to help her, when they try to assist her to get up or down, they end up hurting her, even though their intentions are good.

When she was diagnosed with cancer two years ago, her husband planned a trip for the two of them to Vegas before she started treatment. On the third day, she said, he tell me he don’t feel good. Then, pffff! He drop to the ground. We take him to the hospital, but he die. I say he didn’t want to stick around to watch me be sick. 

Her boys are in their 30s, the youngest maybe a little older than me. The oldest isn’t dealing well with her upcoming death. He jokes around with her in that teasing way kids do with their parents, but there is also true anger underneath the teasing. He is too clipped in his speech, his pauses between jokes or warm remarks too long. I know she hears it, but she doesn’t say anything to him. She knows he is angry.

Her younger son is gentler. He talks quietly with the nurses when his mom is out of the room about how they aren’t going to put her through chemo, that they prefer quality of life over quantity, four good months over six bad. He talks as though this decision was made between him and his brother. Really, though, the decision was made by her and I think she has managed to convince the younger that it was a decision he made, but the older knows it is the decision she made and it’s the not the one he would choose. He says little things once in a while that give it away. Allusions to not having definitely decided against the chemo, that they still had to wait and see how good this radiation is at getting rid of and controlling the pain in her spine that makes it difficult for her to move. Positional pain, the pain that comes from moving from one position to the other. She is fine when she is sitting or laying down or walking, though she tells me, I can feel the radiation working in my brain, I want to touch something when I walk, not hold, but touch. 

She’s making her youngest son propose to his girlfriend of 13 years. She okay, she mean well, my roommate says. That praise sounds cool, but I’ve learned that ‘means well’ and ‘heart in the right place’ is not euphemistic coming from her mouth. It is genuine praise–not backhanded. It’s funny to hear those phrases stripped of archness and irony.

She spoke on the phone with her younger son as he shopped for rings, telling him what kind he should look for, what the wedding band should look like, how the diamond should be set in the engagement ring. Practical, set back in the band so it isn’t snagging and catching on things all the time. She says to her older son, who is leaning on the counter while his eight year old sits on the chair and watches the boxy TV stretched out on its arm, I am missing all the excitement. He scoffs, What excitement, Mom? They’re just buying rings. Like I said, he is angry. He doesn’t want to think about the excitement she is missing. He knows this is excitement. He knows she might not make it to the wedding.

I just want to make it to the engagement party, I don’t care about the wedding. I just want one party and to know he will have the happiness I want him to have in life. 

I asked her this afternoon how she met her husband. It’s stupid, she said, we met on the train. It was 24 hour train ride from south Russia to Leningrad. We met and then that was it. We were together. We married eight months later. I don’t even know if I was madly in love with him, I know I wasn’t. But I knew he loved me. I knew from the first day that he loved me 100 percent and that this was my life. 

I asked her if she fell in love with him madly later. I think so, maybe. I guess so because we were together 42 years. It was a good life. We didn’t have the things people have, not even a house, but everything we had, we had together. We made our money together, no talk about this is my money or this is your money. Two kids. We went to Florida every year for vacation because that was the cheap trip in those days. My husband worship me. I was always right. I wasn’t always right, but he didn’t think it was important to talk about. Think, we talk every day for 42 years. We fight a bit, but 15 minutes later we go back to talking. It wasn’t important. My mother say he didn’t want to see me sick, that’s why he die before me. Maybe that why I get sick again, I don’t want to live without him. 

Yesterday I slept almost the entire day through, and when I didn’t sleep, I lay in bed with my eyes looking off in different directions, I was so tired. It was actually pretty standard for the weekend that comes 10 days after my infusion; every other weekend I am exhausted for a day or two, sleep hour upon hour. This weekend, I had pneumonia, a blood transfusion, pain medications, and a cocktail of three antibiotics to increase the fatigue. Today was much better, but today whatever is in my chest must be loosening up, because I’m coughing for the first time since I was told I have pneumonia, and sometimes when I talk, I get light-headed, and after eating pupusas from El Asador that Dara brought me, I had to scurry back upstairs to put on the oxygen my oncologist said she wanted me to wear all weekend because eating had made me so breathless. I guess I didn’t scurry, but we didn’t take our time getting to the elevator.

Thank you to everyone who has offered help and food and company, or just plain get better messages–it’s cheesy and cliché and I can’t say it enough, but I know the best people. And I know some of you who have sent messages or offered help have felt a bit shy or worried that it’s strange because maybe we don’t know one another well but it is okay, I like it–one of the only benefits of being sick is having lots of time and opportunities to get to know people. I mean, it’s definitely a morbid social mixer, but I like learning things about people. There are people who have become very dear to me who started out as near strangers who brought me things and spent time with me in hospital rooms. It’s weird, yes, but think of all the other people in your life you’ve become friends with as a consequence of shared bizarre experiences.

Anyway, this is becoming treacly and a bit too sweet, and I’m going to blame it on the pain medication, but I am going to leave you with one last quote from my Russian roommate, something she said to a friend of hers here this afternoon: She have beautiful, crazy friends but their hearts are in the right place.

Except it’s not just that. Yesterday morning when I woke up and had my vitals taken, the number (sats) that tells you how oxygenated your blood is read a little low. Low enough that I was asked if I was having trouble breathing, shortness of breath, coughing, (no to all of them — I had just woken up and was a bit groggy, but otherwise felt fine) and then put on oxygen to see if my sats would increase. They did and I just shrugged, I’ve had unexplained incidents of low sats during other hospital stays and the chest x-ray taken in the ER on Monday had been clear. I wasn’t coughing, I had no fever, other than an intensely sore throat and coughing out a bit of mucus from my tonsils, I felt good. But I was scheduled for a chest CT later in the morning to check out my lungs just in case.

Anna, who is very dear to me, was having chemo yesterday, so she and her husband, Ian, brought me a latte and hung out with me for a bit before Anna’s appointment. The event I had been planning for almost eight months was happening last night, and I had a pass from my oncologist to attend it. My sister brought over my dress and shoes and make-up (plus a couple practical things since I knew the throat thing was keeping me in hospital until the end of the weekend at least). I’d forgotten to ask for shampoo, so I walked with Anna and Ian over to Mount Sinai. There’s a proper pharmacy there where I could pick up little odds and ends I’d forgotten to ask for. I looked hilarious — I was wearing an oversized men’s shirt, bright pink pajama bottoms tucked into motorcycle-style boots, and Ian’s jacket thrown over it all so I wouldn’t get cold when we went outside.

I was in a good mood. Seeing Anna always puts me in a good mood, or maybe not a good mood because some moods just can’t be good, they can’t be fixed or made better, but when Anna is around, the most devastating things can happen (and they often do, Anna is my bad-luck charm) but things feel more tolerable because she is around and is one of the few people who I can say gets it, what I’m going through, and I don’t know many people I can say that of and I don’t want to because this is a shitty thing to have to get  (and I don’t mean, like, the obvious shittiness of having cancer in your thirties) and I don’t know how many Annas I can handle in my life.

But I saw Anna and that made me feel happy and I was going to an event I really cared about and had been working on for a long time and was so excited about that I didn’t even care that I would have to be in the hospital for a stupid amount of time yet again, because I’d see months of planning and thought and collaboration coming together and nothing could make me feel bad on a day like that, not even the prospect of several more nights spent sleeping in a hospital bed.

You see where this is going already, I’m sure, and it’s not good. Flash forward to the evening. I have my makeup done, my dress is on, I am waiting for my nurse to bring my liquid dilaudid parceled out into four little breakout doses. My trials nurse and one of the trials oncologists come downstairs together, sit down, and tell me I can’t go. I have pneumonia apparently.

What happened next wasn’t pretty and involved some toddler-level tantrums–trying to prove I could breathe alright as I was heaving with sobs, unable to catch my breath, trying every bargaining tactic on the phone, the oncologist having to call Dr. Siu in Florida where she repeated over and over that I could not go out, she would not agree to it, and I wheedled and begged and cried, and finally sobbed, fine, I won’t go then and I’m doing what you want, I’m not going out but this was IMPORTANT to me and I get to be sad, and Dr. Siu saying, I am not making this decision lightly, I am concerned about your health, and me saying, I KNOW, I KNOW, I already said I wouldn’t go, I get it, and I’m cringing just to think about it now but I was upset enough that it warranted a full-on teenage girl argument.

So that brings us up to last night. I was told that I had pneumonia, and it was possible that it was fungal which is Really Bad, and someone from infectious diseases would come up to see me and I handed over a sample of disgusting mucus that was hanging out in my throat, and lay on my bed in my dress and cried and sent text messages telling everyone I wasn’t allowed to go out after all.

Someone from infectious diseases came today, a tall woman wearing a skirt, a mask, and some goggles who remarked before anything, Oh, you’re reading Steven Millhauser, I love him followed by, you don’t look sick at all! I didn’t expect this from your file, and I said, I know, I feel fine. Other than my throat, I don’t feel ill at all. 

We spent the next 20 minutes talking about what she thinks we may be dealing with. First of all, she doesn’t think it is fungal at all–I don’t have the risk factors for fungal pneumonia, I haven’t been immune compromised since July, I don’t work on a farm, I haven’t traveled anywhere tropical in the last six months, etc., etc. So what could it be?

Theory 1

I caught pneumonia like a normal person

Theory 2

There is a mild infection in my portacath that has basically been sending small amounts of bacteria hurtling towards my lungs and they set up shop there

The reason for Theory 2 is that some of the blood cultures taken from my port have grown a small amount of a certain kind of bacteria that usually just means there was skin contamination at the site when the needle was placed, it is common, we all have it on our skin all the time, but the fact that several times now it has grown in cultures taken from my port (prior to this hospitalization, even) suggests that made the port is infected but just a little bit, not enough to cause me pain or redness or swelling but enough that it could be raining bits of infection over my right lung.

So I’m going to be here a minimum of another week. I am going to be asking for a bunch of help. I need to coordinate things like having food brought to me (I can’t eat anything here), having the dog walked (twice a day), hang outs (work dates even, I’m setting it up so I can work from here because I will go insane otherwise), and I’m sure a variety of other things I haven’t even thought of yet. If you are interested in helping with any of those things, send me a message on Facebook or an email to alicia dot merchant at gmail, and let me know how you could potentially help and if there are particular times or days when you could help. Sorry I’m asking everyone to be so specific, it feels really weird, but I guess it is also really weird to be confined to the hospital, particularly when you feel generally well.

And yes, I know to take it easy and take care of myself and not overdo it, my dozens of surrogate parents and two real parents. I ask that y’all trust that I am making the best decisions for me and my situation and level of health and energy and stamina, so please do not caution me against my decisions. Despite what I wrote above, I am not 15 years old, it just looks that way sometimes.

Oh yeah, and I still don’t have a voice. Hoping that’ll change soon.

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.