Category: Cancer

Death in the age of Internet Friends

Prologue from Teva Harrison’s memoir In-Between Days

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.

Cartoon excerpt from Teva’s memoir In-Between Days

It’s not every day your young lady turns eleven

Birthday eclair for breakfast

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.

These are the things I hope they remember.

Last night at a Wordfest event with our friend Jocelyn, drinking iced tea out of a wine glass and being both grown-up and not (sometimes the iced tea was drank through a licorice straw).

The view from here

I’m trying not to let my current state prevent me from getting writing done so right now laying in bed with the laptop on my lap. It isn’t comfortable but it isn’t as painful as sitting upright either and right now avoiding pain is what I am all about.

Yesterday I took a minor fall down the stairs which banged me up but, at the time, didn’t seem to cause any real damage. Except as the day went on an area of my ribs started to ache and by this morning it was full-blown pain. The chances that I cracked it are pretty good – after all, I have been know to crack ribs in my sleep just by laying on my side for too long. This is the thing with bone metastasis. It’s always there and always reminding me that it is there. Even when I’m feeling good and am considered stable my rib bones (where the cancer is) are still weak. I’ve spent the morning debating calling the oncologist but the last time this happened they told me to go to my family doctor to get a requisition for an x-ray and then I had to get the x-ray done and then the x-ray didn’t show anything because minor cracks and fractures don’t show up even though they hurt like hell. It showed up a month later though when I got my bone scan and the evidence of a recent fracture that was currently healing was right there. Honestly, just thinking about all those steps has me exhausted and I have to get out of this bed in 10 minutes to make lunch for my kids. There is nothing they can do for broken ribs anyway although at this point I would take any painkillers they offered because I don’t have any. Truthfully, the first couple days after a rib fracture I need the good drugs but I never have any on hand. This is something I’m going to have to fix at my next oncology appointment.

Anyway, I went into April feeling excited and focused (after weeks of the stomach flu going around the house). I have some pretty intense physio therapy exercises I am doing to try and fight the complications I have been having from my mastectomy last August and those are painful but at least they are helping me work towards a goal. With the rib pain I’m feeling pretty sorry for myself. I know it will pass but you know that feeling when the universe feels like it is conspiring against you? Yeah. I’ve got that feeling. But right now I’m trying to organize a reunion for my elementary school and I can do a lot of that laying down. Planning an Harry Potter-theme 11th birthday party that is being held in two weeks (and I haven’t started planning yet) is going to be more difficult.

Also, whenever I am bed-ridden my children freak out because they remember what it was like when I couldn’t get out of bed at all and then the mommy guilt takes over. (Another thing pain does is make one grumpy and, in my case, slow and stupid. It has taken me most of the day to get this blog post out there – my children have long since gone back to school from lunch and I wrongly posted this earlier and it didn’t show up and it took me a while to figure out what I had done wrong.)

Art by Elisabeth Alba on the Everyday Witch Tarot deck by Deborah Blake.

In less than a month I’m traveling east to go on a road trip with my sister Amandato Salem, Massachusetts. We are both really excited about this and get to bond over our love of all things witchy and historical. We have rented an AirBnB for five nights and then don’t have anything planned for after that which is taking me WAY out of my comfort zone (I’ve had all our summer vacation and activities planned and booked since early January) but my sister is more adventurous than I am so I’m relying on her to figure things out. (It’s not like I need *everything* planned. I just like to know where I am sleeping and that I will be able to make food instead of eating out a lot.) We also hope to stop in Concord, MA to visit the home of Louisa May Alcott.

Anyone else been to Salem (and area)? We are open to suggestions for things that might not be listed in the touristy guidebooks.

Meeting of the Cancer Club

Image is from a walk we took in the fall.
“Mum, take a picture of me in this tree!
Now take a picture of me in this tree!
Oh wait, this one too.”

Yesterday there was an impromptu meeting of the Cancer Club – which isn’t really a club and only has two members in it: myself and my friend with multiple myeloma. Our daughters dubbed it “the cancer club” because we try to get together for our bone juice (bisphosphonate infusion) appointments every three months. But this month she couldn’t come because her cancer took an aggressive turn for the worse – thankfully it has turned back but her story isn’t really mine to tell.

What I do want to talk about is the discussion we had which seemed so normal to us but upon reflection might seem weird to others.

Here is the thing about Stage IV cancer – you can be ticking along stable for months and then gone two weeks later. That is always in the fore front of our minds. It has happened time and again to women I know with metastatic breast cancer. It isn’t always like this of course, sometimes it is a long drawn out process. Sometimes it isn’t. None of us ever know how long we are going to get top-side but some of us know we aren’t going to get as long as we would like.

Anyway, this friend had a book to recommend about raising teenage girls. She and her husband are reading it and as there is the very real possibility that he will be left alone some day raising teenage girls (their girls are already teenagers) she thought, especially after the recent health scare, that it was a good idea they read it together. And she thinks it is a good idea that Mister and I read it together because there is a very real possibility he will be left alone raising teenage girls. These are the things you talk about in the cancer club. You don’t always cry about them either – often you laugh (at least we do) because what else can you do? Do we want to leave our husbands – who are also our partners and our very best friends – to raise our children alone. Not at all. But this is our reality and the longer you live with it the more you come to accept it. Cancer club discussions also include showing off your recent war wounds, discussing what you want for your funeral and what you definitely don’t want, and telling your friend that it is okay she hasn’t organized 10 years of family photos because it will give her family something to do when she is gone. (I’m the friend in that scenario and I appreciated this advice SO MUCH but I will probably still stress about those photos.)

We also talked about making plans. Because you can never stop making plans – and I didn’t realize how hopeful this action was until I was giving my dad the break down of our summer plans the other day. Because I am a PLANNER our summer holiday is booked, the AirBnB is booked, the summer camps are booked and all that is left to do is live our lives until it is time to leave and hope that cancer doesn’t throw any road blocks in our way. But back to my dad. We were on the phone and he needed the itinerary (I am his daughter through-and-through) and he said, “you’re making plans – that is so great” and he sounded so happy for me and it wasn’t until that moment that I realized how important making plans was – not just for myself but for every one around me. It gives us all hope and, as a mom with cancer, I feel like that is a big part of my job. (A job made much easier when one is feeling well I should add – when you are constantly battling sickness things tend to get a lot darker.)

Our plan for the summer is to take the girls out of school a little early and go on a road trip to the coast – and then come home and enjoy our city. My friend’s plan is to take the family to visit family in Europe. Let’s hope we both make it.

My little treehugger turns 6 in a week. That’s a whole other post but I couldn’t resist sharing these photos.

What else is there?

Currently we are reading Catch-22 for book club. I think our book club is currently being called People Who Actually Read the Book club but I haven’t been following along with the discussion. In my head I call it Mensa Book Club Drop Outs & Their Spouses (I’m the spouse, not the Mensa person in case there was any doubt) but either way I’m not sure I’m going to be finishing Catch-22 this time around which I feel rather bad about since it was my pick.

 

I’ve slowed down my reading a whole lot lately. I came across this bit this morning and didn’t want to continue until I had ruminated on it for a while. In this chapter Dunbar is talking about how much he loves skeet shooting because it is so boring and makes time pass slowly – to him the slower time passes the longer your life. Dunbar and Clevinger bicker about it for a while (there is a lot of bickering in this book) and then Clevinger concedes:

“Maybe a long life does have to be filled with many unpleasant conditions if it’s to seem long. But in that event, who wants one?”

And as you can see from the photo above Dunbar wants one – as do most of the men in this story because it is set during WWII and all they want is to get out of the war and go home. I think most people facing death would trade it for a long life no matter how boring.

Which comes to the thought that has been circulating in my mind lately: what the hell am I doing with my life these days?

When I was first diagnosed I didn’t want anything to do with thinking about death (or reading about death) but now it seems like it is constantly on my mind (and a lot of my reading is focused on people talking about death). Not in the sense that I am thinking about my death all the time but I am thinking about this culture of living grief that seems to be surrounding us as medical science is able to hand you a terminal diagnosis these days and then keep you alive for an indefinite amount of time.

I remember in high school when we had to put our beloved Dalmatian, Belle, down. My dad was away on a business trip and we were waiting for him to come home so we could do it. At the time I likened it to living with a criminal on death row because we were just in the odd period of limbo while we waited for her death. Every day she was with us but not. Then one day I got off the bus and I knew, I just knew that she was gone. I told myself “if the car is parked the driveway then Mum took her to the vet today.” And so I started running and sure enough, there was the car in the driveway (Mum should have been at work) and when I went in the house Mum just said sadly, “I just couldn’t’ wait anymore” and I understood, I really did. I wasn’t mad, we had been saying goodbye to Belle daily for weeks. I was just sad – we all were (Dad was relieved that he didn’t have to be a part of it, old softy that he is, he hated that dog for years but would never have been able to watch her go) – but at least we didn’t have to watch her deteriorate anymore.

Sometimes I feel like that criminal on death row.

For the past couple months I have been thinking about starting a podcast where I would talk to other people who are also living with a terminal disease. But then my friend Jocelyn told me about how much her friends who have started podcasts ended up hating them because of all the work and now I’m not sure that is the direction I want to go in. I still want to interview people who are facing death – and not just women with Stage IV breast cancer either – but writing has always been my medium of choice and that is probably the direction I will take. I miss interviewing people and writing articles. I miss writing and having purpose but I’m trying to slow down and figure out a good balance. To not worry when I don’t finish a book. To not beat myself up when I am not feeling well enough to go to yoga. To sit down and focus on one task at a time.

Our trip to Ireland is coming up and so there is a lot of little things to get ready for that as well. I’m also attempting to knit a sweater for the first time and trying to get it done to take with me. (And nowhere does my perfectionist nature shine through than when I am knitting because I have cast-on this sweater eleventy billion times and switched yarn so I can get it just right.) Plus I was hoping to finish a story to submit to a contest before we leave.

Slow fashion.

Slow reading.

Slow writing.

Long life?

 

Let’s hope so.