Five years and counting

My groovy little brother turned 28 years old today. He was over at my parents for dinner, where Zsolt and I are staying. At one point, he asked me if I remember my 28th birthday. Oh yes, I remember. I’d just had surgery to remove my right breast, and was trying to scrape together some reason to want to celebrate. My friend had thrown me a party in her backyard. Mom was visiting for the month to help in me recover and prepare for chemotherapy. Zsolt had had a birthday the week before – he was literally in the hospital waiting for me to get out of surgery.

So yeah, it was quite the birthday. It was also five years ago.

eye

Five years is quite a significant number if you are diagnosed with breast cancer. I guess it’s the window in which, if you survive, you are deemed ‘cured’ in some measure. Lately I’m not sure how much it does or doesn’t mean to folks. But it’s still a big number. For instance, if you remain cancer-clear after five years you can apply for life insurance again. I was actually looking forward to applying for life insurance.

I remember planning to have a damn big party when I got to five years and was still cancer clear. It was going to be my line in the sand.

But this evening, right to the moment before I was asked that question, I’d actually forgotten the anniversary entirely. That’s not easy to do – many folks can tell you. But I’d forgotten because since five years ago, I’ve have a number of different moments to mark different test results. I’m obviously no longer cancer-clear. Now I fall into the stage 4 level of breast cancer where it spreads and they don’t have any amazing options or cures to offer. There are no more ‘all clear’ timelines. Instead, there’s average life expectancy.

But, dwelling there won’t help anyone, least of all me.

All I really wanted to say was five years. It’s good to be here. Great to be there. I just wish I could have said ‘Five years no cancer!’ you know? Instead, in that moment, I thought . . . five years. . . . and then had this weird feeling deep inside of me.

Here are some good things that have happened over the past five years:

Zsolt got his PhD

We traveled a lot, and did it well

I published Claire Never Ending and in a way, it makes me feel like I will live forever through the ripples

We moved to Canada

We created jobs when there were no jobs

We had our own apartment, and we made friends with our neighbours

I wrote and wrote and wrote, and became a freelancing writer

My friend and I started a podcast

I had three years of remission, and one year of shrinking

Every morning I woke up beside my best friend and husband

We traveled some more

I turned 28, then 29, then 30, then 31, then 32, and soon I’ll be 33

We came home

We made home

I sang in the shower

There was much drinking of tea with friends and family

Board games happened

And many other things, many big and small moments.

Life has been beautiful, just as much if not more than it has been hard. So, I am very, very grateful for these five years. They do mean a great deal to me, even if this anniversary isn’t what I had hoped it would be. Illness sure as heck changes your life, but I hope I am a better person for it. If I can’t have my life insurance policy, I can at least claim a damn good life.

So that is all I have to say about that.

~Catherine

 

 

 

Random midnight rant

It’s late and I have a wheeze in my left lung. I never know what to think about these things. Is it the humidity in the air? Maybe I’m just feeling anxious from a weekend of booking travel and staying up too late? Perhaps it’s because my team is out of the playoffs. . . I’ve had wheezes on and off for the past two years, often anxiety related, but who knows. Each time I hear/feel the wheeze, it plain scares me. Everything stops and I take a few deep breaths, asking myself: is it really there? Did that really happen?

Yeah, it did. It happened. It happens too often.

Sleepless Night

Is it the nerves, or it is – you know – that cancer thing the previous scans showed was growing?

Here’s a little dose of honesty. I’m really truly disappointed to not have made that study. There is this drug out there that’s not within my reach. Not for the time being, at least. It’s now on sale in the US while they finish up trials. I had some very high hopes for that drug, because this hormone therapy stuff just doesn’t seem to be cutting the mustard anymore. And frankly, I don’t want to have the chemo conversation like, ever. As in never.

My mom has been doing a lot of research. Thank goodness for that. I just can’t do it, not like she’s able to. So we will be working on my body and its ability to heal. Because of her, I don’t have to be passive as I wait for the next set of scans. I’m grateful for this. Also, there’s this yoga place with a first-time special of 35$/month for unlimited classes. We are going to go together. Another thing that inspired gratitude.

Topic jump:

Last week. I left my oncologist appointment with a new prescription, by the by. After some bizzaro conversation with the resident doctor who is learning to be an oncolgosts about an abnormal pituitary gland inside of my brain, followed by many reassurances by her and Dr Canada that is very likely not cancer – or at least, not breast cancer – anyhow, following that, I receive a prescription for another estrogen blocking drug given that the previous wasn’t working. Honestly, while I am going to take it this summer just to see what can happen, this new drug doesn’t give me high hopes. We are buying time. Not time as in ‘stopping the cancer from growing’ but more like ‘delaying any hard conversations about treatment options in hopes that something better pops up’.

So, I’m going to take this summer for what it is: an escape. Maybe I can write. Maybe we can rest. Maybe we can enjoy a beautiful few months together away from the word ‘cancer’.

Topic jump:

Here’s one other thing I just want to say. It’s really late at night, and I’m writing this in the dark. I’m certain Zsolt would love it if I stopped writing, but he’s a good sport too. Anyhow, here is what I wanted to say: treatment blows for young women with bc. Like, it sucks. I’m blocked from all the good studies because I’m not 1) over 65 and 2) without a uterus.

Where are the drug studies for young women with this damn disease? Why can I be eligible for the drug with great potential? Why do I need to wrestle with my oncologist and pharmacist to be covered for a certain prescription, and have to argue how I’m most certainly post-menopausal – not having had my period for over a year, enjoying the never-ending flux of hot flashes and anxiety, watching certain body parts shrink from lack of estrogen, definitely not ovulating with a diminished sex drive, and also not-so-much enjoying the constant pain when doing adult activities due to a crazy weird tightening of the lady parts. Seriously, it’s like being revirginized after every go!

So, don’t tell me I’m not postmenopausal! BAH! The nerve of some people. I could go on, but had better not.

Topic Jump:

Soon it’ll be the 10 year anniversary of when Zsolt and I got together. We met in Nice, France, and plan to go back there for a couple days during our trip. Pretty damn romantic, eh? I expect it to be too-quick, very emotional, and deeply important to us both to return. The number of times we’ve recounted the story of ‘how we met’ to one other – well, it’s a lot – so to actually be returning to the scene of that miracle feels good. It’s important to us both.

Topic Jump:

It’s almost midnight. I’m getting tired. No wheeze for the time being. I guess it went away.

Topic Jump:

Bedtime.

Good night.

Random rant over.

🙂

Maybe now I can sleep.

P.S. (Apparently my right leg is ahead of me. I’ve been sitting a weird way while writing this, and now it’s totally numb!)

Cruising to Hungary!

So, we just bought ourselves two tickets to Europe on the Queen Mary. Yep. That happened. June 3rd.

Yay for Hungary! Yay for Sailing! Yay for Balaton!

(boo not getting onto studies. I’m officially on some other hormone blocker instead. Hmm. But hopefully the drug I wanted will soon be commercially available, so it won’t need a study. Soon. Hopefully. In the meanwhile, I’ll try the healing water of my favourite lake & work with my mom!)

Queen Mary 2 Front Cover