What comes next? I don’t know.

Yesterday was one I’d like to forget forever. At about 6 AM, I woke up Zsolt with a hard cough. I woke up myself too! The cough, unfortunately, was very, very unhealthy. Like, get to the ER unhealthy. It was followed up by a kind of gurgling in my lungs.

Pretty fucking scary, I have to say. After a day in the ER at the General in Ottawa, with a few tests and a lot of waiting, plus a visit from various doctors, the reality was confirmed – one of my lung lobes had collapsed. The treatment I’m on isn’t working. Hasn’t been working for a while, and so the problems have been growing – most recently blocking one of the airways into a lung area, hence the collapse. And it’s time to jump ship to different options. This a point in the road I really didn’t want to reach. I didn’t want to get here. I don’t know how it will go down.

But I do love my life, and I love my work, and I hope this new treatment option – the scary C word,but considerably more light in dosing, plus possible radiation to the trouble making lung lobe blocker – will have the effect of pushing back the damn progression, because then I can carry on as I’d like. Apparently a range of doctors will be meeting to discuss my situation, and come up with a plan on how best to tackle this. In the meanwhile, I am breathing fine. The lung doc says I’m compensating remarkably well for the loss of the lobe.

Anyhow, it was a scary day. Perhaps even scarier for my husband, who was left alone after I’d passed out from panic at 6 AM and managed to get me the needed help – he laid me out safely and called 911.

My parents and he stayed with me all day in that small, quiet, and thankfully uneventful ER room. They were with me when I received the news of the progression and its ramifications, and they are with me in what needs to be done moving forward. Together I am certain we will make the best of this. I’m lucky for all of this love and support.

One day at a time, one challenge at a time.

But holy shit, life is fragile.

Advertisements

In which I lose my mind, slightly

Hello hello hello

and

hello!

Okay, enough of that. I think I’ll do that thing where I blog and pretend no one is watching. Dance like no one’s watching – except, I’ll write. And this isn’t on some big stage. And most importantly, I’m not wearing any leotard, ballet shoes, or waving any jazz hands.

Man, work has been interesting. Like, 9-5 and beyond interesting. It really hasn’t stopped since I began. Today I made a list of all the things I’d like to do – for only one part of my job, not even the other part – and there were 80 things on that list! EIGHTY. And they’re not like ‘sharpen all the pencils in my pencil holder’ they are complex-to-organize pieces of business.

But hey, I’ve made a list. Next comes the question: which of these are going to help me reach my goals best, and also fastest? From there, I’ll prioritize. Along with: what am I am actually capable of doing at this moment?! And what needs to be done first, so that other things can be done afterwards?

You know what full time employment feels like? (She asks herself, because she’s meant to be writing as if no one is reading. Damn.) It feels like an adventure game. Monkey Island, with fewer monkeys, or pirates, or insult sword fights. If I want to accomplish goal A, I need to have resource B and C in my inventory – but I can only get those resources by solving puzzle Q. etc. So yes, apparently my love of adventure gaming has prepared me for being a grown up. Who would have known?

Anyhow, I love my new job. I love, love, love it. You know what I do? I do this! And I love it!

But you know what I haven’t’ loved? I haven’t loved the surging pressure headache I’ve been getting. And I haven’t loved the wheezing in my chest – caused by elements that I really don’t love. And I haven’t loved that the boxes in my apartment STILL haven’t been unpacked despite my having moved in a month ago. AND, since I’m writing to myself and am allowed to complain like no one is listening, I DON’T love the FUCKING cancer that is trying to FUCK UP my life.

Ahem.

Excuse me.

But it’s true. I am both happy and frustrated at once. When I’m at work, it all goes away. When I’m at home, and not watching the Amazing Race with my husband, I focus far too carefully upon the wheeze that has developed in my chest.  Along with the cancer cells, I think stress has simply gotten to me. And while I fully realize there are means to relieve these pressures, I can’t seem to . . . get there. You know?

Like, I should meditate. I should exercise. I should do yoga. I should go for a swim. I should eat well. I should take vitamins. I should call the hospital. I should call my health care insurance. I should brush my teeth more often. I should clean the kitchen counter. I should unpack those boxes. I should maybe start chemo. I should finish writing my next book. I should edit that podcast. I should write this article. I should finish a blog post. And oh yes, I should do the things that really, truly make me happy.

Or I could just go to bed.

Often, at this point, bed feels like the best option. Except I don’t even really love my bedroom, because we moved into a really weird, though also clean, apartment, and I’m not sure if I like it yet.

As I said, complain like no one is watching. Sorry.

Now, it’s not always like this. I do all those things on the list above quite happily (except for anything hospital related, because that does not make me happy). But I haven’t written a blog post in a long time. Partly because I’ve been tired. But also largely because I’ve started a new job, and I still don’t’ know how to navigate between my voice, my job, and my private but also public health and life story. When it comes to work, I never want to drag in the heath realities. So I don’t update my blog, because I don’t want folks noticing what’s going on when I’m not at my desk hustling to make an awesome book club.

What I probably really need to realize is that no one is watching. Like really, they’re not. And if they are, they’re not really because we all have lives that demand attention. But still, it’s been a weird challenge for me. I’ve never felt the need to censor myself before, except when I worked for the library. And frankly, that was hard even then. I feel it even more so now.

But I like writing these things out. If I’m ever going to move away from these stress-pressure reactions, it’s definitely at least in part going to be through writing them out.

So there it is. My complaining blog post. I’m a little happy, a little sad, and a little tired. I’m also really excited, totally in love, and scared out of my mind – but hey, why can’t we be many things at once?

And now I will revert to my default coping method.

Time for bed.

Goodnight.

Finally some good news

Every few months I get an x-ray of my lungs. This is done to check on the spots. You see, last summer when the spots were discovered by the CT, I’d also had an x-ray which didn’t show any cancer. The spots were too small to appear on that less precise form of x-ray imagining.

Therefore, I’ve had an x-ray since then with the idea being, if no spots show up than the cancer is stable. Truth be told, I am having a hard time handling these little hurdles in the metastatic way of life, and so I didn’t blog about their coming or their going. There was nothing to say, I was stable – i.e. nothing showed up.

Last week I went for a CT scan. My oncologist, Dr. Canada , has had hopes of adding me to the latest promising phase three study, where I may have (it is randomized) been given that drug in testing Palbociclib, which seems very promising for ‘extending life’ – which is very good and yet not good enough, if you ask me. If there was any change in the scan, I would be eligible.

I didn’t write about this scan last week. I couldn’t. It felt like my world was about to crash. Mixed between normality were cracks of panic. And what is very hard in all of this, is that these scans and checks are now a way of life. One scan or x-ray will always be followed be another in a few/several months. Metastatic breast cancer, unlike stage three and below, has no end of treatment. It’s living scan to scan, and I wonder if anyone can become hardened against this.

But I don’t really want to talk about that today. So I will stop there. Today I’d rather look at the encouraging things.

I had my results yesterday. They were good. We went out in the evening to celebrate with my parents, because even if I do need to go through this every few months – good news is GOOD. It means something is being done right. The cancer tumors were not just stable, but had somewhat shrunk across the board. Shrinking is a good thing.

Lord, I’m doing so much right now. There’s the vitamin C, the Zoladex, the supplements, the emotional work. So it is hard to say what is working. Maybe it’s my body’s immune system? Maybe it was publishing my novel? Maybe it is just everything all combined? All I know is this is good news, and I need to keep on with the routine. News like yesterday’s is my motivation.

So there is the update. I’ve had so much support from everyone visiting Bumpyboobs and beyond with the diagnosis, the book, living well . . . so when there is good news like this, we need to celebrate. Never mind what comes next.

🙂

Happy faces for everyone. Even if mine is still a bit tentative!

By the by, one of my friends is a doctor at the hospital where I had my results. While waiting for Dr Canada to arrive (after the nurse ushered us into a small treatment room), my friend knocked on the door and came in to chat. This was a very good thing. Everyone should have surprise visits from their friends while waiting for potentially life-altering news. It takes the edge off. So a very big THANK YOU for doing that. And I loved your outfit too, by the way. Polka dots are awesome.

P.S. I might be going to something called Sex-a-palooza via some free tickets. So, there could be a post in that!

P.P.S. This song is sooo good! You are invited to dance in your chair while listening to it.