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Mom

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Tomorrow is mother’s day. Oh, how I miss her. But lately I’ve taken to expressing gratitude that she’s not here for this. This Covid-19 lockdown, she’d be worried more about Shawn and me than about her own self — and the brain tumour thing, too. She would hate it knowing that chemo’s been challenging for me, and there would be no way to be together. So I’ve been saying, “Well, it’s a good thing Mom’s not here for this”. And my brother agrees.

But then, a couple of weeks or so ago, (it was a hard time, too, I was all barfy and weak and sleepy), she did come. I felt her so strong, that I woke completely alert from a nap and said, “I have to call Mom”. But then I realized she wasn’t there to answer. I felt her right beside me, that time, and another time too. The feeling of her hung around for a while. I could hear her laughter — almost feel her hug me. Though she wasn’t here, not really.

It took me until just the last couple of days to realize that, no, she was there. That was her answer. She’s right here, just as she always was. That’s why I felt her. But I don’t need to tell you that — you knew.

Happy Mother’s Day.

Chemo ‘n’ Covid

I am not at all motivated to write. This is an internal life I am living at present. I’m in a position where self-isolating is totally possible, and not at all a hardship. Not like most of the rest of the world. I don’t yet know if I’ll be able to go to work when my medical leave is over. But I’m not fussing about it. I’d like to. But at the same time, I haven’t done hardly any of the things I said I’d do — write every day, play my accordion, exercise every day, cook delicious things.

I apparently missed the notification that I was embarking on a sick leave. And hoboy, I’ve been sick. I am nearly done round 5 of chemo now, and feeling better every day. But the exercise every day is still a bit challenging. For example, I went on a bike ride today — 30 minutes — and nearly puked 10 minutes in. Yesterday it took me over an hour to complete a 30 minute workout. If I were talking to anyone but myself, I’d say, “Dummy, you’re on chemotherapy! That shit is toxic — take it easy — and someone ELSE’S version of easy!”

So that’s what i’m doing. I’m even going to post this, even though there’s nothing particularly interesting in it, or pictures or anything. It’s the practice that’s the important thing. write. you’ll get better if you do it.

Do you remember…?

When was the last time you hugged someone (someone not quarantined with you)?

I can’t remember. It was more than two weeks ago — Maybe it was when Karla spotted me at the most recent meeting of our new feminist discussion group. “The most recent” sounds a lot better than “the last”. Maybe it was when I dropped my friend off at her house after a 12-step meeting. Won’t be doing that for a while. All the meetings are online now, and I’m not to leave home, except to walk the dog and go to medical appointments. High risk for infection, me. So’s my brother, but he still goes to work. He builds fire trucks, though, doesn’t have to breathe right close to other people.

When was the last time I went out for a meal? Well, Su and I went out for tacos after the most recent meeting of our feminist discussion group (we plan actions, too. Or we will, once we can leave our houses again). The time before that, I went out for breakfast with my friend and former colleague (from when I was a university teacher). He’s tenured, a few years from retirement. I’ve thought of him so often the last couple of years — I admire him and enjoy his company. Though I was pretty being within a few days of starting chemo, I enjoyed our meal together. That time, the restaurant was empty. It was very early in the morning. Beautiful breakfast — soft-poached eggs, avocado on toast, yogurt and fruit. I was pretty sick, I remember. It was within a few days of the beginning of my 4th round of chemo. We talked about the idea of the “devil’s advocate”. He said, my friend, he said, “there is no place in the university for the devil’s advocate. Everyone must believe the same thing now.” He’s alarmed about this.

When the faculty of education hounded me out, he and another faculty member went to the faculty association, outraged, and wrote letters and demanded they do something to protect me. I didn’t know that then, not until it was all over, but it was sure encouraging to learn. He took some risks, in fact. He refused to chair a committee to evaluate and allocate courses to the sessionals (of whom I was one– though my file was ‘mysteriously’ left out that time) due to the lack of transparency, and the constraints imposed by the faculty on his and the committee’s leadership and judgments.

In true “Big A” Academic style, he looked up the history of the idea of, and value for, the devil’s advocate. He went back to the story of Job in the bible. He read it in Hebrew, Arabic, English and, for good measure, French. In each version, the story began with, “So the devil was strolling through God’s court. And God happened to meet up with him and asked him what he was doing these days….” They apparently had a pretty amiable conversation.

It’s true, they did. I looked it up in my grandfather’s bible, the little one that he got May 1st, 1927 from the Brynna Welsh Congregational Sunday School. Four days later, he sailed from Southhampton to Canada.

Anyway, back to the devil. and Job. and God. I guess the Devil could get a capital letter, too. Let’s change that to “Satan”. says so right here in the bible, too. So God says to Satan, “Hey! How are you? What have you been up to?” and Satan says, “Oh, I’ve just been roaming the earth, looking around, bumping into people, you know…”. God asks Satan if he’d run into Job on his travels. God was quite fond of Job and told this to Satan. He said, “That guy, Job, he’s one righteous man, loves his family, does right by his community, and he’s good to me, too.”

“Yea, I know that guy,” said Satan, and he continued, “Of course he is generous and good and loyal to you!” said Satan, “why wouldn’t he be righteous and on good terms with you and everyone else? He’s got everything! Lots of grain, many head of cattle, a pile of kids and grandchildren who all adore him and are successful and all that. It’s easy to praise your name when he wants for nothing!”

Well. God was kind of miffed, he had more faith in Job than all that. So he said to Satan, “alright, you go then, give him some challenges — you’ll see. Only you can’t put your hands on him, just his stuff”

Satan really gave it to Job, I tell you what. And Job, he was upset, of course, but he never gave up his faith, and he never cursed God, either. Ever, even when God gave Satan the okay to turn up the heat. Anyway, the point is, the Devil’s advocate is the one who helps the righteous become stronger; the one who points out the flaws in the arguments and helps the followers provide guidance to the leaders. How do you know you’re on the right track unless the Devil’s advocate tests you? God doesn’t come off looking too good in this story; and Satan, well, he doesn’t look as bad as all that, really.

At any rate, in the end, Job became more than he was before, and he had more, too. Lived to be about 140 years old, knew all his grandchildren — became a happy guy again. Would he have had as satisfying a life had he not endured all that suffering in the middle there? Well. Probably. Who knows?

I liked that story. Got me thinking. My professor friend, he does that for me. Gets me thinking. And now I won’t see him again for a long while. I am SO glad we got together that day. Covid-19 wasn’t even a whisper then, not one I was hearing anyway. That was February 26th.

The last public gathering was when we had Lee speak to our gender-critical feminist group about a history of the rise of gender-ideology and its effects on feminist organizing and women-only spaces. March 14. Great discussion. Anyway, since then, everything has been cancelled. So it’s not just feminists anymore, that’s kind of nice. It’s been a lot more peaceful around here. whew.

March 29th: three more days until chemo begins again. This week has been good; more moving, more writing (letters!), more outside time with the dog, and a ton of Zoom meetings. I miss being with people. A lot. But I am grateful for technology that helps us connect; I’m grateful that I feel well and there’s lots to do around here, still; I’m grateful that there is Employment Insurance (though I’m still REALLY angry there is no more Unemployment Insurance). I hope there will be increasing momentum for a Guaranteed Livable Income as we go on. We can totally do it.

In closing — I cherish the last times. the last time I saw my brother and sister-in-law (Christmas lots of food and laughter and cold); the last time I was at a big public gathering–that was when I presented to Vancouver City Council on behalf of our group to tell them to fund Vancouver rape relief and women’s shelter (they didn’t, of course. Self-righteous bullies, can’t let women organize ONE place just for women, not ONE). Vancouver Rape Relief and Women’s Shelter is a small, and mighty group of women who have organized a 24-hour rape crisis centre and transition house for battered women and their children for almost 50 years now. They have a global influence by this time. They are principled feminists, and they maintain a women-only organization. They are dangerous to the powerful because they are tenacious and brave, and they will keep trying out new tactics to reach women and offer opportunity as well as solace and real safety. We ARE that dangerous to the powerful, all us feminists. We won’t shut up in the face of their threats, dismissal and insults

— but now we have the Covid, and what will that help us do, in the long run? What will it hinder, in the long run?

I think the last in-person meeting I went to was when a guy celebrated one year. His story was inspiring and the cake was, too. Win-win. The last person to visit our home — Marusha. The last time I shook someone’s hand, when I left my volunteer shift and he took over from us. The last time I went for a coffee — Beaucoup on Fir — with amazing pastries as well. I hope these won’t be the last–the end. But there are always last times. We never know when they will be.

oh, I just came back in from playing my accordion when everyone was doing the 7 pm cheer for the front-line and health-care workers. One day, I promise, I’ll start an finish a post on the same day. Then it won’t be such a dog’s breakfast, possibly…

It’s not a spa, after all — [Feb 27 2020]

Well, week one of my medical leave is over. I had imagined that I would do light workouts every day, play my accordion every day, write, read, prepare my story for the Seattle Storytellers Mabinogion weekend in May (that’s why I was writing down Welsh words), go to a meeting daily, iron shirts, take the dog out, cook more and get rid of a bunch of stuff, too (books, papers, photographs, my beautiful desk, knick-knacks I don’t want anymore (there are none)). But did I do any of that?

No. No I did not. I’ve worked out a couple of times, and have gone out with the dog every day, but played accordion only once, ironed a shirt, cooked one meal…This whole chemo thing is a lot more work in and of itself than I had imagined. You know, when I’m between rounds, I kinda forget the fatigue and the pukey and the way my skin feels inside out and prickly all the time. I forget that sleep is nearly impossible at night, but I’m always too tired to read or write. I forget that my fingers are all fumbly on my accordion and it takes me forever to forge a recognizable tune. I forget that picking up a barbell seems impossible (until I did it again today, and then I was just a lot weaker than I want to be — but still, I completed a whole workout, so that’s something). But I also forget how satisfying it is to do any of that stuff, even at half-speed or less.

So this week, I presented to city hall and that was good. Didn’t make one iota of difference to their vote, they still decided against funding Vancouver’s only women-only rape-crisis centre and transition house. But the city council and the staff saw a strong showing of solidarity and support for Vancouver Rape Relief and Women’s Shelter. I don’t think they heard a word — most of them looked pretty checked-out during all the presentations–and they’d made up their minds. Or the city staff had made up their minds for the council. Looks like that’s how it’s done. Anyway, it looks like there is a women’s liberation movement in Vancouver — and that there are a good number of male allies, labour-movement and left allies, and regular people allies. We left half way through the day and walked home. We knew what the weak-hearted and social-climbing liberals on council would do, but we were encouraged to be together with so many who would stand together to protect women-only space, and women’s rights to speak in public — to take up space in public.

March 15: it seems now that the meaning of public space, and the right to take up public space–or to protect it — has to shift for a while. There are empty shelves in all our grocery stores. I went to costco a few days ago, but walked right out after seeing the line-ups (we have toilet paper), and we’re running low on ground flax seeds, so we won’t need as much tp in a while. heh.

I finally backed out of the powerlifting competition I’d entered, too. I wrote to the nurse practitioner who is, seems to me, the hub of all the neuro-oncology stuff going on at the BCCA. I figured if I wrote on a Saturday, she’d get back to me sometime on Monday. She replied within an hour, I think! And her reply was, basically, “ABSOLUTELY NOT”. She worded it much more nicely, though. told me that she wasn’t going to the gym, either, and had cancelled an important family gathering, and they were really running as fast as they could to keep up with all the changes. It was clear that my participation in this meet had less to do with my ability and more to do with my responsibility. I’m a bit more vulnerable, and if I can take precautions to avoid getting sick, that means more resources available for other people. And for me, down the road when I may need it and the pandemic is died down. No sense exposing myself to a bunch of germy powerlifters and referees and audience members and getting sick at the same time as everyone else. Where’s the fun in that?

I was disappointed and relieved at the same time. There’s the fall classic coming, and by then I’ll be done chemo, and the covid pandemic will be over, or at least managed. And I’ll for sure (hopefully…) be able to lift enough to qualify for the provincials.

I’m not done this post, but I never am done, am I? and I started a long time ago, I’m just gonna publish it and start another one. With more time on my hands, I’m now remembering some bits of stories and thoughts and questions I want to explore here. More later, Beautiful People

Message to the City — and the Chemo diary continues

Well, today is day, um, 7 of round four of chemo. And I’m nearly a week into my medical leave from work. So far today i took the dog for a walk, went to a meeting, had a nap, wrote out some Welsh words (more on that later), and continued a letter to my Deborah. Also had a bagel and a bunch of fibrous foods (flax seeds, figs, that kinda thing) and some ice cream for dinner. Read a little bit. It was a long day. It’s cold in the house. My skin is kinda crawly and i’m not feeling so great. Not bad enough to be in bed all day, but not well enough to be at work, either, I think. I could struggle through — I know I feel ever so much better when I’m around people, when we’re social and engaged with each other. But I’m supposed to rest.

Oh! I also wrote a presentation to City Council from our new group: Vancouver Ad Hoc Committee of Women for Women. We’re arguing that council should give Vancouver Rape Relief and Women’s Shelter a grant to do public education and outreach. Last year they gave it, but put them on notice that it would be the last one unless they changed their mandate and allowed trans-identified males access to the service, and to work there. Of course VRRWS can’t do that, even if they wanted to — it’s a collective of women, organizing for women, to end male violence against women. Pretty near every other women’s service or organization in Vancouver has changed their mandate — there is, as far as I know, only one transition house for battered women that is only for females — and that’s Rape Relief. Anyway, the grant is to fund their public education work, which is, and always has been fully accessible to the public. They have, for nearly 50 years (!) carved out, not only safe space for women to connect with each other, and care for each other, and tell each other our stories; but to take up room in public — public parks, roads, indoor and outdoor spaces, public institutions — and to foreground women’s stories, women’s politics, feminist organizing, feminist dialogue, feminist debate and education — They are bold and tender and act with courage and integrity. They are women working for the liberation from male domination of all women. And for that they are, and have been, punished, threatened, and insulted. For that, the city of vancouver has withdrawn a grant that enabled them to invite the public to hear from women thinkers, activists, writers, agitators, poets, artists.

So some of us have written letters back to the city, and we are making a presentation to the city to tell them just what we think of their punishments. Just what we think of their cowardly campaign to shut women the hell up. We know that women-only space poses a great threat to the powerful. That’s the point. Our freedom, and our share. We’ll get it, eventually. And all of our humanity will be the better for it. you’re frightened of that, of sharing power, of changing the structures that shaped us (they are all we know!), but so what. Face that fear with us. Listen to women. Let us gather as females, to share our lives and stories, to gather our resources, to change the world. We don’t all agree, but that doesn’t mean we don’t need our own space within which to debate. So let us have it. So we can let YOU have it. Tomorrow, 9:30, the meeting begins. February 26th.

Leavings

So I decided, finally. I’m taking a leave from work. My last day will be February 20th and I can take up to six months off. I resisted for the longest time — all through radiation to about halfway through the third round of chemo. It wasn’t winter, after all, that was beating me up. It was the chemo. Sometimes I’d come home from work and go to bed and not get up until it was time to go back to work the next day.

This is not typical of me.

I’m in between rounds now, and I’m still a bit tired and cold-ish. Plus my teeth hurt. Also, apparently, a symptom of chemo. I tell you what, the treatment is more troublesome than the tumour. Which is a nicely alliterative sentence, isn’t it? I asked the oncology nurse practitioner for a letter and she sent one right away. When I went to talk to my supervisors they were very kind — “anything you need, Erin. You’re not asking for a leave, you’re telling us. you’ll have a job when you’re ready, just give us two weeks notice and we’ll be ready for you.” I didn’t know how wound up I’d been until I felt the relief wash over me.

One of our residents left us last week. He died — we don’t know how — and his body was found near where he worked. I get to plan my leaving, but he just — vanished. He left us with so many great stories, and we can hear his music and his laughter as we tell them. We’re all very sad. and hopping mad, too. He was doing so well! We loved him so much — his friends with whom he cooked and danced and who teased him and with whom he laughed ’till they nearly peed.

Since he died, I’ve had the chance to talk to lots of people about him. EVERYONE said, “He checked on me when I first came, and he knew my name right away”. Many people remember his music, and he did little things for everyone that we didn’t know about until now — the checking in, the extra smiles, the little notes on the door, the ‘inside jokes’ with so many people here. When I had an office next to the family lounge (the one with the piano), I’d hear him playing every evening. It was so wonderful. I never went over there to thank him.

You never know. You never know how much influence you have. You never know when it’ll be the last time. It’s cliche to say, “Make the most of it. Tell your loved ones that you love them”. Cliches get to be that way for a reason. It’s not easy to get to be one. Something has to happen, a cause and an effect, over and over before it gets to the eye-rolling phase. “Oh jeez, sure. I loveyouiloveyouiloveyou — it becomes meaningless!” Unless it means something. Take the time. I have to remember, I have to be patient (it’s not my best thing, patience).

That’s something Bo gave me — his life was big and troubled; loving and patient and musical. He attended to people who were new, and scared, and hard to reach. It was easy to tell him he was beautiful and lovable — most of the time. Not so easy to tell that to others. So that’s something he did that I can do — say, somehow, “I love you”, to people who are not so lovable, too. Because there has to be more to go around, We can keep the love we have for our dead going, by telling the stories, and pouring on the sunshine, and telling the troublesome that they are lovable too. We’re having a memorial for him, for Bo, on Thursday (two days hence). I’m glad we can do that together. This grief business is really hard all alone. We have each other. And we have the leavings of the lives we touched; who touched us too.

Okay. time to go to work. it’s snowing like crazy! Big fat white flakes of soft cold beauty. Love it. Don’t love driving in it, though, so I’ll give myself a good head start. I have 2.5 weeks of work left. Will make the most of it.

Round 3 of 6 — a Chemo diary

I took a couple days off work last week because I started chemo again. I took the dog for some short walks (this stuff makes me dizzy, I wasn’t up to long walks), ate bland food, started writing. Thought about a nap. Took some anti-nausea medication. Admired the light diffusing the cool blue sky and the fractals of ice on the puddles on the sidewalks. Played tug-o-war with the dog.

January 10 was Su’s birthday. We went to medieval things all weekend — Friday we heard the Sequentia Ensemble for Medieval Music: an evening of “Charms, Riddles and Elegies”, then Saturday we heard a harpist and storyteller named Benjamin Bagby to tell Beowulf. It was amazing. Music and words from the deepest, darkest winter and from the deepest, darkest ages of Anglo-Saxon history. We were both transported. We met there a doctor with whom Su worked, and she sent Su a note later. Here’s what it said:

I felt like I was being bathed in testosterone!!  The Song of the Vikings, killers and pillagers.

I thought it was pretty funny us nerdy whitehairs sitting with folded hands murmuring “How beautiful” about all that gore and galloping that sounded like it was written for 8 year old kids!

But the poet let the cat out of the bag by mentioning birth in one of two comments about women in all that torrent of words.  Every mother has a tale of blood and heroism, terror and wonder, much fuller of wonder than the Grendel story, the story of her baby’s birth!   (I think my Viking roots are showing, I’m one upping smugly just like Beowolf did the drunk at the party). 

That was just an orgy of womb envy.

LOL  G

We laughed and laughed — Of COURSE! It’s all womb envy — women go into battle all the time — ALL THE TIME — and unarmed, thank you very much, just as Beowulf went against Grendel. I never did. Well, not the birthing part. I left that to 80% of the women of the world. I dare say a great proportion of those women never had a choice about whether or how many children they would have, either. but I digress. as I do.

I meant this to be a bit of a chemo diarly. I just took the 11th dose of procarbazine. only 4 to go. Then a week, then a small amount of Vincristine intravenously (it’ll take about 15 minutes). Then a couple of weeks and a rest from it all. I can’t wait for that part. You know, generally I like hospitals. I like the MRIs, and I really enjoyed the last intravenous session I had. It was a windy day, and from the 6th floor, there’s a pretty good view of the city and the mountains behind the sticky-uppy buildings and construction cranes. In the wind, it looked for all the world as if the clouds and the cranes were dancing together. Very graceful and subtle, like a baroque minuet. The waiting room on the sixth floor is super comfortable, too, with a big jigsaw puzzle on a table, and coffee and tea, and sometimes biscuits or fruit, too. a few chesterfields, and some recliners, too. very nice. But I’m tired now, and a bit dizzy, and nauseous most of the time, so I’m about ready for this all to be done.

I’ve got it super easy, though. Last time I was there for my IV, I shared the room with a young person. She had a big bag of something dripping into her. She looked like she may have been 30, but possibly younger. Every other time, I’ve been on the younger side of the average age. Mind you, I don’t know. I don’t feel like I look as old as other 57-year-olds I know. But I do. That young woman, she was all curled up on a chair when I got there, looked like she’d been there for an AGE, and when I left, she was still curled up and quiet. Hunkered down. I don’t know what the chances are for people. Once the nurse introduced me to another person with a brain tumour. But that person’s tumour ended with “blastoma” rather than, as mine does, “glioma”. Anything with “blast” in its name can’t be good. What do you say to someone? I probably didn’t say the right thing. “Oh, I think I have a nicer tumour than yours”, and I realized how that sounded and stumbled — “We are in the best place, though, for treatment”. God. He was gracious about my stupid comment. Smiled kindly.

It’s cold. The Scottish-moors-in-the-dead-of-a-dark-ages-winter-cold. Su is making some wonderful soup that smells amazing (my appetite has been unaffected — still 16-year-old-boy-ish), and the electric ‘blanket of love’ is on the bed, and I’m worn out. I’ll go to work tomorrow, and I know that the moving about and the people will perk me up NO END. Because they always do.

Oh! also! I registered to compete in my first powerlifting contest in 25 years!Here’s a picture:

2019winteropen_logo

I’m so excited. Then I feel a bit nauseous. It’s six weeks away, March 21-22, so I have time to get in shape. My goal is to qualify for the provincials. There are 49 women competing! FORTY-NINE! Last time I competed there were a handful. This is gonna be great. Today at the gym, ‘great’ felt a LONG way away, but I will just keep doing on thing at a time. It’s nice to have a goal. And a generous coach, and a great gym.

Anyway, that’s it. My hair is growing back. People have given me some lovely toques and hats, which is good because my hair looks weird. All baby fine in one area and curly pokey thick everywhere else. I should go ask my friend to cut it again — she’s a great barber and she’d do a nice job. Plus we think the world of each other, and when there’s so much admiration flowing through scissors and clippers, you can’t go wrong, can you?

Not quite it — did i tell you? it’s working. The radiation, the chemo, all of it. It’s shrinking the tumour. All is going according to plan. Not as fast as MY plan would go, but then again, I’m a terrible planner. Whoever’s doing it can carry on.