The cagey in-between place

Now that chemo treatments are over and maintenance treatments (aka clinical trial) have yet to begin, I spend a lot of the time trying to distract myself from the hardcore reality of my situation: tv, podcasts, crosswords, inane crafty things (felting? yup. tried it), cat videos, pictures of cakes. I haven't been officially deemed in remission (I have to wait for the CT scan for that to happen), though all my numbers, bloodwork, etc. look good and point in that direction. Woohoo!, right?

Yes and no. Please don't think for a minute I'm not grateful to be here, to have had my tumour obliterated by modern medicine and to have my body soldier through the poisons and the ginormous surgery without serious complications. Oh, people. I swim in an ocean of gratitude. Every. Single. Day. So yes, I am happy about nearing remission. And yet cognizant of the chilling question marks ahead. I'd venture to say that anyone with cancer or serious illness might have felt the same at some point.

Ovarian cancer, as you may have read on the deep, dark Interwebs at 3 in the morning to hahaha help you sleep hahaha, is a shifty, sneaky bastard. For women diagnosed at an advanced stage (which, due to a lack of available tests and vagueness of symptoms, is most of us), the chance of recurrence is high, or not insignificant, or... 

Well, listen, I try to stay away from deep, dark Interweb numbers and statistics because a lot of them are based on old data, and because I have a brain that will obsess over them until I am rocking in my bedroom corner, chewing on a sock. So I don't seek out or quote actual numbers. But they're high, these invisible-to-me numbers. I know this much. 

A small-yet-sizeable percentage of women do not recur at all, are considered Cured. So clearly I'm trying to put my energy in that direction. I can hope for that, I can blast the disease with all the modern and alternative medicines that exist, I can hazard guesses and make predictions but ultimately, I can't really know if I'll end up there. Cured. Sneaky means sneaky. Much of what will happen is determined by the disease itself. 

So while I'm happy to be done with chemo, excited at the prospect of my hair making a curly comeback, thankful not to have had any surgery complications, I am only cautiously so. I am that old woman standing knee-deep in the ocean, gingerly splashing water on her arms, afraid to dive right in. `

And trying still, after all these months, to make some sense of any of it. I suspect there's not a lot of sense to be made. 

The cancer relative (one step back)

During this whole big horrible thing (BHT) there have been many family occasions I could not attend, didn't feel well enough to attend, or didn't want to attend for fear of being seen as "the cancer relative." But after months of missing so many (3 cousins' kids are getting married this year), I decided I should try to get to one, a bridal shower. Unlike many of the others, this occasion was local. So I said I would go. I put on a cute regular dress, because now my snail's-pace-healing incision has finally gotten to the point where i can put something around my waist without pain (it's really been the summer of the t-shirt dress until now), pulled on my stripy cancer hat (which is really my husband's old bouldering cap, the only cap I will wear even in the 100-degree heat because every other cap in the world makes me cry), and grabbed my litre-sized water bottle, because it was only a couple of days post-chemo, and I needed to stay hydrated, plus take a steroid pill at 2. Then I waited to be picked up my cousin.

It was hot inside the house of the hostess. It was not her fault. The air conditioning was on but not working well due to the number of people or due to the a/c unit, or due to me refusal to wear any cap other than a knit acrylic one.  So I was pre-tty sweaty. 

Everyone was nice, as people will be at these things, but also nice-polite, in that distancing way, because cancer. is. awkward. It is a bald reminder of mortality to everyone it encounters. And while people know it's not contagious in any real way, they also do not want to get too close, because death. 

I know this nice-polite, one-step-back way of being, because I used to be nice in this way, before I traveled to the other side. It is weird, let me tell you. Death, the subject of it, is so taboo and so feared in our culture, that I couldn't be angry with people for taking the one step back. And yet. The nice-politeness had a very ungracious way of leaving me feeling even more isolated. CANCER RELATIVE ALERT. 

It's no one's fault, I guess. But when I'm at home when in the hideously comfortable recliner trying to figure out my next life move, staving off the thought that even I don't know how long I'm going to actually have a life, yeah---well you can imagine, that's pretty lonely stuff.  So, venturing out and being around people should, in theory, feel better than that. 

It does, a little. There is a sense people admire you for being actually going out in public in a ridiculously summer-inappropriate medium-weight acrylic knit hat when you probably don't feel awesome, when you know that you will be The Cancer Relative.  (Note to self to use that phrase in a poem because I can also write it as, The cancer, relative.) 

But it's the nature of the beast, isn't it -- to feel isolated almost everywhere except for the doctors' offices and the infusion centers and the hospitals? Living with cancer means inhabiting an entirely different country. 

Fragment from cancer center (on or about 3rd treatment)

It is my life but it is stripped back a little or a lot. It is still my life. I still want coffee. I still yell in my car at people driving stupidly. But some former sheen or, what is it? veil? is gone or peeled back, or lifted up... and I can see more closely. 

How everyone struggles. How close we all are...to...I don't know. I'm a poet, death was always a concept, an inevitable concept, or something some of us danced around and dallied with. It was close because we chose it to be close to us, and when and if we could, we walked away. Some of us didn't, couldn't. Some chose it that way.

But now I am closer. Or at least I feel it more. I see it in so many more faces. The struggle to stave it off, balancing that with the pain of living. It is harder sometimes, for some people. 

It stands to reason, if a person considers herself closer to the source of life (by way of spirituality, creativity, etc.), she must also consider that she is closer to death. Source is source.

Last chemo before the great unknown

Yesterday I had my last chemo treatment, that is, my last treatment in the first part (or front-line) of dealing with the disease. I initially wanted  the title to be "The last chemo (for now)," but I'm trying not to go there, I'm trying to balance a positive outlook where I am one of the people with stage 3 who never recur (depending on what ancient statistics you unearth, that is somewhere between 20 and 30%), with the reality of the disease, which is yeah, obviously 70-80% do. Why not me in that magical lower-number group, hmm? I mean I have choices in terms of perspectives or mindsets right? I can at least choose my focus. 

FOCUS 1: Short and scary
I can focus on X, a person I knew who died from this disease about 5 years ago. I'm calling her X because X seems cool and I thought she was cool, even though i'm not sure she felt the same way about me. X was close in age to me, and from what I can tell from facebook and the brief blog she posted, she received a similar diagnosis and staging. She had a different regimen of chemo and surgery, but she seemed to get through front-line treatment fairly well. I don't know all the specifics, though. We were not close.

She finished her last chemo and went on a trip with her husband. Then she went on a trial for maintenance, but had to drop out when she recurred 6 months later. She had a 2nd surgery which seemed to go okay, but then developed pneumonia and spent a long time in the hospital with that, and then decided on palliative care at home and didn't get better, and died, 14 months from being diagnosed and a year younger than how old i am now.

Truthfully there are so many specifics I do not know, her exact regimen her personal medical history, how her body reacted in detail to the drugs. Every person is different with this, even if many of the drugs and regimens are the same. X had posted pictures and was very optimistic and positive like they tell you to be. Like they say helps. She was doing that. I don't know exactly what happened.  

FOCUS 2: Long and strong 

Alternatively I can focus on Y, a woman I met only recently when this all came to light. Y had the surgery and chemo 15 years ago, and she has never recurred.  Same diagnosis, 15 years ago, before many of the medical advances and angelic anti-nausea drugs they have now. She went through this raising 2 children and working as close to full-time as she could. Y who also happens to have beaten breast cancer as well. Strong, force-of-nature, lovely Y who has been so kind to me. NOT. ONE. RECURRENCE. NONE.

FOCUS 3: Long and anonymous

I can focus on Z, a name on top of an entry in an on an online support group for people with ovarian cancer. Z, who has been free of the disease, 32 YEARS after her surgery. 32. years. I can't remember if she's had recurrences.

Truth is yes, I can choose my focus. Truth also is, regardless of chosen focus, what is going to happen is going to happen. Very often, people with horrible prognoses end up living a good long time, and people who seem like they're going to be ok do not make it. So while I'm trying to keep focus on Y and Z, a part of me knows my situation could be closer to X's, because that part is not up to me or to the doctors or to positive or negative thinking. That part belongs to the disease, which will be aggressive or not-as, which will run its course regardless of what we throw at it, and so is out of human control. Isn't it? Is it?

Thoughts from the ugly recliner, part 1

Since the surgery a couple of months ago, I've spent a lot of time in this crazy-comfortable-yet-equally-ugly reclining tilt chair feeling weirdly isolated. I say weirdly because I have so much love and support  -- I mean holy smokes! – from all around the world -- but the isolated feeling is not about not having support or being loved.  It's about being camped in this chair for most of the day watching, hearing, imagining the world happening without me. Neighbors walk their dogs. Cars go by. My husband goes to work. 

I can't remember the last time I felt normal in that innocent, pre-cancery way, where my biggest concern was the mean girls at work or my lack of career direction or wondering if we were going to rent a vacation place this summer or what? Those questions seem luxurious to me now or rather, having just those questions seems luxurious. Now I wonder if I'm going to spend the rest of my life (which is – how long, exactly? No one knows, no one will even give a ballpark guess because, doctors, statistics, precision, insurance, uncertainty) taking every moment so seriously.  Like, hey Universe, did I not take myself seriously enough before? Was I too carefree, hedonistic, lighthearted? hahahahahahahaha. I can't laugh enough at that. 

I was the worrier, the anxious one, not always fearful, but always too serious. And so now there's something to be very serious about, every day. Every effing second. And so now should I add to my immediate life goals not being serious, because I don't know how much time on earth I have left? What the actual fuck.

While camped in said chair, I am trying to read something that both makes me feel better and keeps me alert. I search a lot for cancer blogs and while some of them say meaningful things, I am not a rainbow-gifty-florally kind of reader (or writer). I don't know that I will ever say, cancer is a gift. Or was a gift. A gift? Cancer is more like a mail bomb, in my opinion. Maybe it will detonate, maybe not. Can't really say.

I remember when depression and anxiety were my big things to deal, my daily struggle, my quote unquote crosses to bear. They were the most serious things I managed on a daily basis, and while I did not always manage them well, I had at least gotten to a place (after so much therapy and medication and trying and trying) of stability with them. They were in my life but they were not my life. 

I want to say that all the above-mentioned therapy, et al prepared me even one iota for this, but I'd be lying. Once one gets diagnosed with The Big C, once I did anyway, it is back to Square 1-- that is, blindsided, devastated, completely and utterly unprepared, flailing. 

I may get to a similar place with cancer, where it is in my life but not my life – but wow, that is hard to imagine right now. Now, however distorted it may be, I have the feeling that cancer will be part of my life from hereon in. Every day, for all my days, and how many days will that be?

I miss coloring my hair. I miss having hair. I miss boxing and kayaking and working, using that somewhat-intelligent part of my brain to make an actual living. I miss caring about the small, innocuous, wonderful things.

Things that are 20 centimeters long

• Half a regulation bowling pin
• 1/10 of André the Giant
• A brick
• The average wingspan of an adult yellow warbler
• The largest recorded Eastern box turtle
• A soda straw
• A Trojan non-lubricated condom
• A Kent 82T folding comb

What's with the name?

One day you're fine dot dot dot was the name I gave to a health-anxiety I'd held for as long as I could remember. It went like this:

One day you're fine, you wake up and shower and go about your business and you feel fine physically, you go to work, maybe you leave early because you have a doctor's appointment for some vague persistent ache or something. And when you get to the doctor, you describe said vague pain and the doctor takes a look, and that's when BAM-- you find out you have a terminal illness, an incurable disease, an inoperable tumor, mere months or even weeks to live.

I knew this kind of thing happened to people all the time -- well maybe not all the time, but often enough that I'd read about it, heard about, believed it could happen to anyone. I knew there was nothing one could actually do about the fact that this could happen-- cancer and other life-threatening diseases happen, sometimes to people who just 24 hours prior did not know, could not fathom, did not feel especially unwell. 

I knew this intellectually, accepted it that it existed, but emotionally, I could not be ok with the fact of it. I was off-and-on obsessed with it, reading cancer blogs until the wee morning hours. One day you're fine—the next, you're staring down your own death decades before you thought you'd ever have to. One day you're fine and the next, you are most seriously not.

I never pushed the thinking any farther than that – as in, once you know this, how does it then affect your life?  I just saw it as a fact that I knew was true but that I could not reconcile internally, and I couldn't imagine anyone being able to. How do people go through every day knowing that life at any moment could pull the proverbial rug out from under your feet-- how do they know this and not end up crouched in a corner, rocking back and forth?

And then, as the story so famously goes, it happened to me.

One day I was fine, I was at the doctor's getting my annual pap smear, mentioning some vague abdominal cramping,… and the next, I was staring down my own death decades before I thought I would ever even have to think about it. In the space of 24 hours, I was diagnosed with stage 3 ovarian cancer.

For the record, I'd had no previous serious medical issues, no broken bones, tonsilitis. There was no history of cancer in my family. And, despite the 20-centimeter tumor now lying across my abdomen, I had no excruciating pain.

When my OB-GYN doctor told me what she suspected it was, I remember the visceral feeling of separating from the rest of the world, from the non-cancer people, the people who could continue with their lives not knowing. I could feel the isolation already beginning, the leaving of one country and the entrance into another from which I could not return, even if the disease didn't kill me.

So that's why the name. And that's why this blog or record or journal or memoir or whatever it is. I tried not writing about it for the longest time, swore to myself that cancer may now have invaded every pore of my body and my life and there is nothing I can do about it, but I will NOT let it enter my writing space or what was left of it, the former safe space/sanctuary. I can control that at least.

But I write to make sense of things. And this is something that now, even 5 months, 5 chemo treatments and one ginormous surgery later I cannot fathom. So here I am. Here we are.