I’m sitting on my bed right now unattractively hunched over – because that is the most comfortable position sometimes when my back is in pain – trying to get through a long to-do list. So far today I have made phone calls, spent 20 minutes cleaning up the downstairs office (more later I hope), got something I posted to the local Buy Nothing board out of my house (this included a puppy and friend visit), scrubbed down my kitchen counters (seriously gross), made lunch for my girls, drank countless cups of tea, and done who knows what else (because I’ve already forgotten).
Can you tell I’ve had a break from chemo?
Chemo breaks are great but not as good as no chemo. It’s hard to be thankful for something that makes you feel awful even if it is also saving your life. Another three weeks of chemo starts this Friday and I know I will sick with nerves by Friday, worried about having another awful allergic reaction. But I am grateful. Beyond grateful to still be here and get another chance at keeping this disease at bay.
I know as someone with cancer I’m supposed to talk about how this disease changed my life and made me grateful for every little thing but I think I was pretty damn grateful before. I’m still annoyed at it for making every day an uphill climb. The whole point of chemo is to kill off all the cells – cancer and otherwise – with the hope that the non-cancer cells will have a fighting chance. It also kills off your brain cells and makes you stupid and forgetful and generally foggy. I’ve had to stop knitting because I keep messing up everything I try to do and it is frustrating and disheartening.
In spite of all this I avoid using the popular phrase: “F**k Cancer!” I mean, it isn’t as though I never think it but this disease is now as much a part of me as having curly hair. I’ve had to learn to live with and manage curly hair all my life and now I have to live with and manage a body riddled with cancer. Obviously my curly hair isn’t trying to kill me but it is always best not to fight against your nature, and unfortunately part of my nature is now cancer. It is better to work with it and keep it under control (much like curly hair) than to try to be something I am not. I guess in a way it seems like tempting fate by being so negative. I don’t want to piss off the cancer. If I have to live with it I want to live for as long as possible.
(Also I wrote this post really fast because I am working through Kerry Clare‘s Blog School course and am trying not to over think everything I do because I never get anything done that way. Hopefully it doesn’t sound too disjointed or crazy.)
Pinktober has started in earnest. This is the month that breast cancer; and talk about breast cancer; and pink stuff being sold to supposedly support breast cancer awareness; is all up in everybody’s faces. Having breast cancer and knowing how little funding goes into research for metastatic breast cancer, and how it mostly goes into overhead and pink trinkets, has made me want to hate October.
Until I remember it is fall and Halloween is at the end of the month and the line between this world and the next is getting thinner for everyone – not just those of us straddling it with a terminal illness. So I refuse to hate October because it is one of my favourite months and no stupid marketing scheme is going to take that away from me. I’m thinking with my bald(ish) head it would be a good year to go as a skeleton for Halloween but I’m hoping that won’t be too creepy for my children. Or in bad taste? Or maybe as Jack Skellington because how awesome would that be?
During my first post-diagnosis October (2016) I participated in the CIBC Run for the Cure – even though I suspected it was going to be a loud pink mess.
Radio stations were set up and were loud and screamy. People were yelling and holding up signs like “You Got This!” and “F**K Cancer!” and talking about being survivors and warriors and throwing bras around. It was really rather garish to be honest. However, I was happy to be there with my family and friends who wanted to support me (a whole crew of elementary/junior high school friends and who can lay claim to that?) Happy(ish) to put a face to Metastatic Breast Cancer where there are no survivors, just people trying to survive. But also sad about that last part.
During the walk I saw a woman with her husband and two small children. She was being pushed in a wheel chair and wrapped in a blanket and I thought: that could be me someday. That someday is today. I walk with a cane and need the use of a wheelchair for an outing longer than the length of our block. (Truth: I haven’t actually be around the block in a really long time.) I don’t know who that woman was, or if she is still alive, but I hope she is. I hope if she is participating for the Run for the Cure this year she will be able to walk it on her own. I hope, like me, she is still around to enjoy her children being three years older.
This year instead of walking I’m doing a read-a-thon called Turning the Page on Cancer. The idea is to sponsor me to sit around all day on the 20th of October and read books. So basically you are paying me to do what I do daily but all funds goes directly to metastatic research through the Canadian Cancer Society. (This fabulous idea is the brain child of Samantha Price a young woman also living with Metastatic Breast Cancer. There are a LOT of us out there.) So many people have reached out and have offered monetary support for which I will be forever grateful – and thankful that you don’t feel the need to have a pink physical commodity of your generosity for which you should be thankful too because that means one less lecture for me on consumerism. (At least for this blog post.)
Feel free to join in on the 20th of October. Either sign up to read for the day and raise funds yourself, share this post to encourage others to join in, or just spend the day reading. The link I provided takes you to the main Turning the Page on Cancer fundraising page. I am linked there but it isn’t a competition, you can support anyone.
On Monday’s we talk about cancer. Which of course, is already a lie because it is Tuesday and I talk about cancer every day. I wish I could not talk about cancer but it is always there reminding me that my body is failing me right now. Of course there are many parts about living with cancer that I don’t talk about because they are too hard so no matter what I say/write it is never the full picture.
Anyway. I have been brainstorming – or as I like to call it, blogstorming , things I would like to write about thanks to Kerry Clare’sBlog School that launched yesterday and which she invited me to participate in. I thought Mondays would be a good day to talk about cancer and get it off my chest for the rest of the week leaving me open to write about other things. Like books. Or sustainable fashion. Or how much I love soup. Currently Friday is chemo day – so by Monday I am somewhat able to put a coherent sentence together. This past Friday was chemo #4 so I have two more treatments before a break and then three more after that. Hopefully that will be the end. Hopefully that will mean that my bones are trying to knit themselves back together and every moment of the day won’t be filled with pain and opioids.
For now my days are heavily on the pain and opioids side. I can’t walk without taking pain medication and even that “walking” is tricky at best. Around four months ago I was limping and uncomfortable but still out there doing things. Now I am relying heavily on my cane. Yesterday my mum and I went out and rented me a wheelchair. I’m of two minds about the wheelchair. On the one hand it will mean maybe I can go out more and not aggravate my hip. On the other hand it means my body is still deteriorating and I am even more reliant on other people to go out and do basic things. Each step away from independence seems to be a dagger in my children’s hearts (and my own). First they were worried about the cane. Now they are upset about the wheelchair. Last night after Moira went to bed she came into my room with tears and asked me if my getting a wheelchair means that I will have to be moved to a nursing home soon. I said no. Of course I said no. I also said I don’t really want to think about that. But what if I’m lying?
I did five sessions of radiation to my hips on my last break from chemo to encourage bone growth. This is what we are holding on to – that the chemo and radiation together will save me again. There is talk of hip surgery later if things don’t improve but I try not to think about that too. I can only think about things so much without spiraling into a depression. But that doesn’t mean I am incapable of holding on to hope and making plans for the future and dreaming dreams. I always hear about people who were calm and peaceful when “their time had come.” I’m so far from calm and peaceful I can only hope that means I am not near the end, right?
Yesterday I found out that Teva Harrison died. This wasn’t a surprise really, I knew she had been feeling unwell for months even though the last time we actually “talked” (and by this I mean chatted via Instagram messages) was shortly before my surgery last August. Her presence on social media had become very limited due to the fact that she spent a lot of time fighting her disease but also because she spent a lot of time living her life. She had wonderful friends and a wonderful husband and a smile that would make everyone stop and take notice of her. Everyone agrees that there was something magical about Teva. She wrote an article about her ability to find four leaf clovers. She says it isn’t magic but I’m not sure any of us believe her.
I cried when I found out. It was right before the bedtime train started. We were trying to get Oonagh to brush her teeth and get ready for bed and a message from a friend told me she had died because I hadn’t been on social media all afternoon having taken Moira to a play and trying to live my life in real time. Then I sucked back my tears and read three chapters of Sophie Mouse and sang Oonagh a song and tucked her into bed and then went and watched the second half of Thor Ragnarok with Fionnuala and Mister. I worked on the current sock I am knitting. I braided the girls hair before they went to bed. At some point during all that I read about Teva’s death and posted about it on Facebook because I didn’t know what else to do with my sadness and I felt like I needed to say something. Did I need to say anything? Not really I guess but that is how I process things. I write them out. I wanted everyone to know that another light had gone out from the world.
The funny thing about my knowing Teva is that I was already following her on Twitter before I really knew who she was, before I knew anything about metastatic breast cancer – before I knew that it was slowly destroying my bones. I was following her husband too because of his charming David Leonard Weather Service posts (#dlws). I didn’t even know they were connected in any way. This is the thing about the Canadian literary scene: it is very small and one connection leads to another. Even for someone like me, who isn’t really part of the scene, who thinks of herself more on the peripherals of the scene. I have, over the course of the last 20 years of blogging, made a number of friends who either were already authors or have gone on to be authors. I feel more like a Canadian literary cheerleader than a card-carrying member. So I knew about Teva. I knew about David. But I did not know about their great love until I was diagnosed and someone pointed me towards Teva’s cartoons in the Walrus. And then we talked and become friends but I always feel the need to say “Internet friends” because really, that isn’t the same kind of friendship as someone who lives close by and you talk to all the time. It’s just someone you wish you could have a closer friendship with.
Last summer I took a social media break for a couple weeks. I can’t remember when this was exactly but it was before my surgery. When I came back my online friend, the poet Anya Krugovoy Silver had died and I had missed it. And by missing the initial announcement I felt like I had let her down. I had never met Anya but we had chatted over the years about mothering through this disease and how it has effected our lives. Both Anya and Teva were some of the first people to reach out to me when I was diagnosed and I will be forever grateful for the lifelines they provided.
When Anya died I couldn’t even talk about it. I felt guilty for taking a break from the internet and for not knowing that her health had taken a serious turn. The result is now I’m afraid to take a break even though a lot of the women who were my initial lifelines in the early days of this diagnosis are gone. Another thing the three of us had in common were supportive and caring husbands that we were all very much in love with (and, I hate to say it, but this seems to be rare with women who have late stage cancer). If you ever followed AnyaSilverPoet on Instagram you would know that her husband Andrew still updates her page. He will break your heart daily with his grief over the loss of his wife but in a culture where we are generally so afraid of death and dying it is really a beautiful thing to witness. For those of us who “knew” Anya it is a gift.
Both women taught me that no matter what you just keep going. You can rage about your disease in poetry, or in essays, or on your blog, but that is just a fraction of your time. It’s the day-to-day life that needs to be lived that makes being here so worth while. It’s those wonderful husbands that you aren’t ready to leave yet, it’s the children who need stories before bed and their hair braided, it’s those books that you haven’t read, or the places you haven’t visited that make it so imperative to keep on getting out of bed in the morning – even on the days you might not feel strong enough to do so.
Still, I feel like every time one of these women die we have all been cheated some how. After I posted about Teva’s death on Facebook and Instagram yesterday people kept saying “I’m sorry for your loss,” but I didn’t really know Teva, just like I didn’t really know Anya, although I treasured each and every interaction and online conversation I had with them. The truth is it isn’t just my loss – it’s all of our loss. When a light like theirs goes out in the world there is no getting it back.
Moira turned 11 on Monday. This makes a full 11 years of motherhood.
My girl is ridiculously sweet, sarcastic, funny and fiercely loyal to her friends – but can also be very caustic towards her sisters. She holds herself to a very high standard and has a hard time when other people don’t hold themselves to that same standard. People often comment about how much she is like me but, honestly, I think she is so much better and smarter than I was as a child. (And definitely better looking than I was in the fifth grade.)
It is hard to judge the person you were as a child. Recently I have been back in touch with people from elementary school (I am in the process of planning a reunion) and they have said they remember me as being “kind and funny”. I think that this could be the best compliment I could ever receive and I desperately hope it is true. I worry, I guess, that maybe there were times when I wasn’t as kind as I could have been and I feel like I have spent a lot of my adult years making up for this.
Every birthday the girls go through is bittersweet because I often wonder if it will be the last one I will be around for. I am, of course, ecstatic to be here but the lingering fear always hovers on the edges on the good days, and sits right on my (fragile) chest on the bad ones. Moira was seven when I was diagnosed and to still be here to see her turn 11 is pretty miraculous.
Eleven is such a great age. Sure, the hormones are kicking in and we have fully entered the tween years but the conversations are getting better (and she has always been a great conversationalist), the ability to do more activities together is increasing, and there is such joy in glimpsing the person she may become as an adult. I used to think that I had to leave all sorts of mementos behind for my girls when I died but having this extra time with them has made me realize that puts a sort of pressure on them (and me) they aren’t going to need when they grow up. Not everything from mummy needs to be infused with sentimental value that they feel compelled to cart around for the rest of their lives. I had once thought about writing a journal to each of them with my thoughts but that was a lot of work and what do they need something like that for? Instead I try and do things with them and give them memories – even if, in the future, those memories are vague and hazy – of being loved. My legacy to them will be that I was funny and kind and loved them fiercely. That we celebrated every birthday with the quiet honour it deserved because I was just so grateful to be their mother for whatever amount of time I am given.