Would I ever do this again?

The conference part of my trip is over. It’s kind of intense to be surrounded by the topic of cancer for four days, not necessarily in a depressing way, it’s just kind of consuming. And as much as having cancer is a part of my life on a day-to-day basis, it holds nowhere near as predominant place as it did this weekend. It can make it difficult to know people — introductions are done by sharing the kind of cancer you had and how it was diagnosed, things that are important at something like this but the fact of someone else having cancer or having had cancer doesn’t automatically mean we’re simpatico. Interactions are often so brief that it’s difficult to see the facets of a person beyond their cancer diagnosis.

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.

Here I am, in Vegas

The first day of the conference is over. I met Nick at the bar, he waiting for a double Jack with a splash of Diet Coke (to avoid looking like an alcoholic) me drinking a screwdriver but later switching to Jack on ice, sans soda of any kind, because any labels that could be made about my drinking should have already be made by this point in my life.

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).

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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.

Sublimation and distraction

I cried in front of my psychiatrist last week. I feel like I’ve reached the end of something, that things are finally calming down even though I know there hasn’t been enough time to say that, but I just feel like I can breathe easier, but I still know I’m on the rollercoaster and the train is going to tip over the precipice soon and I have to trust that the tracks will still be there. I told him it was strange, that I was feeling so calm and level finally but was still crying. He said it was good, that I was letting myself feel bad about what’s happened in this last year. I feel like all I’ve been doing is crying over this last year. 

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.

Where all the things are at

I just took my last antibiotic. This hopefully marks the end of such things for a long, long time. It’s strange to think that some of the things I thought were side effects of treatment — namely, fatigue and high blood pressure — may have been related to the infection, and not to the trial at all.

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.

Here’s what’s going on

As suggested in the previous post, I have an infected portacath. The line has to come out, which will happen at 3 p.m. after I have been given enough sedation that I either don’t know or care that a long tube that runs up my neck and down to just over my heart is being slowly threaded back out of my body.

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.

Back in the joint

My oncologist said I’ve spent more time in the hospital than out during this trial. A slight exaggeration, but not far off the mark. I’m in here again, have been since Friday evening when I developed a fever for what feels like the hundredth time in the last six months. My request to wait until morning to go to the hospital was overridden by my oncologist, which turned out to be a good thing as shortly after arriving I developed a faint, dotted rash over my arms and legs. Classic strep, the ER doctor said, maybe staph. You’re not going home. If I hadn’t developed the rash, I would have gone home (as promised by my oncologist) that night after having blood taken for cultures. Because it might have been nothing, just a side effect of last week’s infusion. My fevers come like clockwork after them, though it doesn’t biologically make sense to develop a fever that long after a drug has been administered. But it happens every time. However, correlation does not equal causation.

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.

Do you know what today is?

Appropriate that I’m in the hospital today.