Feb 17

Where we are at, what you can do, where we are going

it has been 6 weeks since Jay has been in the hospital. Obviously, this is an IMPOSSIBLE situation, that comes after several dramatic, traumatic, impossible situations. We have been living from one drama to another for YEARS.


So I would like to start with a very big disclaimer:
I hate asking for help. Self-sufficiency is the core of who I am. So when I do ask for help, it is under dire and extreme circumstances. I also loathe being pitied. Don’t pity me. I am not a refugee who fears my daughters being kidnapped by extremists. What we are going through is out-of-this-world difficult, but I really don’t need pity. I would also like to address why I write so publicly about what is going on: it’s practical. I have dear dear friends all over the world, and the internet is how we stay in touch. Sure, I could put this all in a secret blog or an email newsletter. But I don’t. I put out there for anyone to read. You don’t like it? You think I should keep these things private? That is totally fine. Stop reading.

OK, now that we got that out of the way, let me answer a few questions:

What is happening with Jay? Do they know what is wrong? Is there a plan for him to come home?
We will never really know what is going on. It’s a combination of the aspergillis infection, lung inflammation, a bad pneumonia and something that happens to his heart where it starts racing out of control. Managing all the different drugs requires very close monitoring which means daily blood tests and adjustments. And he is stil dependant on oxygen. He will be able to come home when 1) he does not need oxygen at rest (he could need it for walking, that would be ok) and 2) the meds he needs are stabilized. He may still need IV at home, we have done that a hundred times, but we cannot do it until it doesn’t need to be adjusted. So in the mean time, we wait. And no, there is no goal or set date. It’s a day-by-day situation that has had several set-backs so far.

How are you? I don’t know how you do it! You are amazing/strong/etc

Stop doing that. We have been over this before. I am not superwoman. I do it because I have no choice. I stopped working. My whole life revolves around trying to make this a livable situation for the girls. I even stopped going to see Jay every day because it was too hard. And feel a lot of guilt about that, because he deserves daily visits and help too. But it is in fact too much for me to handle. Some days, most days, pants are too hard to handle. Please know that just because you see me for 20 min and I’m chatting and I look like I got things under control, I don’t. I plan the entire day in my head around ‘being there’ for the girls. So while they are at school, there is a lot of crying and very long hot showers because while I am in there I don’t hear the dogs whining. See, NOT a superhero.

What can I do to help?

Here is the thing: I don’t know. I really really appreciate that you want to help. I really do. But the onus is on you to figure out what you can do to help. Trust me, when I need something, I make it known. I invite myself over to dinner, I pawn my kids off on friends with zero warning, I make their husbands come and change the lightbulbs so we don’t live in the dark. But most days, I can’t think of what I need. So if there is something you would like to do, by all means, offer. I may say no. Don’t take it personally. Sometimes it’s just the timing. My friend K asked me to go to the gym with her and I was super excited and I said yes. And then I went to put it in my calendar and realized it’s the day I take NJ to the hospital. I have been taking her EVERY WEEK since June and yet, in the moment, it skipped my mind.

Here, in no particular order, are notes on things that are helpful:

  • weekend playdates. I love my kids. But I have ZERO energy to do anything besides knit and watch netflix. Which was fine for the first 5 weekends. But now, they are bored. Notice the THEY. Please remember that I have 2 lovely daughters. NJ is miss popular and gets many many invites, but SQ doesn’t have a large network of friends. I only know 2 of the parents at her new school (not so new). The school doesn’t use social media or email, so I can’t just send out an SOS. I would bet most of her friend’s parents have zero clue what is happening. So if you happen to be doing something fun one weekend, think of them.
  • Spring break: NJ is off next week, SQ the first week of March. We have not planned anything because 1) they are not at the same time 2) it would be unthinkable to go away if Jay is in the hospital 3) if Jay is home they will obviously spend all their time playing board games and watching more netflix. So I am incapable of forward planning. If you are in town either of those weeks, think of us if you go to movies, indoor play spaces etc.
  • Food: I won’t say no to meals. BUT, and I know this sounds terrible and I should just accept it as it comes, it is VERY helpful to have a heads up when food is coming. Because one day we got 3 piping hot meals at the same time. Sure we can freeze some, but sometimes we can’t. And it makes us feel bad when we don’t eat the hot piping meal someone just delivered. Also, if you want your containers back please put your name on them and then you need to remind me. Because if pants are hard, imagine what it’s like trying to return containers. I know I currently have 2 glass pyrex dishes, 1 metal soup pot and more tupperware than a sales lady. It’s all sitting in my mud room. If it’s yours, drop by one day and reclaim it. It sits there, judging me.
  • Coffee/lunch/exercise: OK, this is the hardest one to write….. i would in fact enjoy adult conversation NOT in a hospital setting. Here is the problem: finding the time to do it in this crazy schedule. It’s really not easy. Most days I am running around back and forth to the hospital and to the pool so stopping for 20 min seems impossible. But I am human. And I do need to do *something* for myself at some point. So if you want to ask me to join you for coffee after drop off, or meet you at your gym, or come to my house to look at the bat-shit-crazy crafting I have been doing for the Bat Mitzvah,  (heck, bring your kids to MY house on the weekend, we have a ping pong table!) please, email me or text me (don’t call me. you know how I feel about the phone). I can promise you that it will be next to impossible to make our schedules work. I will probably say yes and cancel, or say no several times. But please know that the fact that your asked me means a lot. And on the very off chance that we can make it work, it would be great.
  • Helpful little things: a friend sent her husband over to bring food. When he got to my house he saw our stairs were icy, so before he left, he spread salt on them.
  • VISIT JAY: I cannot say this one enough. I know the hospital in in the godforsaken east end and there is no accidental way to be there on the way to or from something. But the poor man has been in the hospital for SIX weeks. he is also reachable by cell phone and email. So you don’t need to contact me to get to him. the only time that is not a good time is Sunday at dinner, because that is when the girls get to see him.

Finally, THANK YOU. I know that our family asks way to much of our community and our friends. Trust me, I lay awake at night with anxiety over what a burden we are to those close to us. Every single kindness that has been given to us is GREATLY appreciated, more than you will ever know.

Feb 08

from hurricane to Tsunami

today marks the end of the 5th week my husband has been in the hospital. We don’t count in days anymore, we count in weeks. I don’t want to get to the counting in months part, but it might come.


Kind of crazy to think that a stage-3 diagnosis turns out to be a walk in the park compared to this. Sure, I was sick and wanted to puke and lost my hair. But I did it all from the comfort of our guest room, 12 steps from a bathroom, at home, where we could squeeze in good times and family times whenever it suited.


35 days in the hospital.

Jan 19

NED and the Hurricane

Two weeks ago, my little one found out her ITP was no longer going to be treated with weekly IV. One can live nicely with ITP, as long as one sit son the couch and does not physical activities that results in bruises… So no more diving, skate boarding, snow boarding, skiing, skating, basketball or soccer. Which are ALL of the things she loves. ESPECIALLY diving.

That same day, my husband went for a long overdue checkup. He has not been feeling well since December, including an ER visit. The decided to put in a PICC line, which he went in for on Tuesday. That was 14 days ago. He’s been in the hospital, on IV and oxygen, in isolation, unable to see the kids since then.

I had to stop going to work, because I can’t manage the kids and the dogs and visiting him AND going to work. Also pants. I can’t seem to put on pants, which makes going to an office a problem.


Now, the kids and I, we have done ‘dad-in-the-hospital’ many times. Even once since the transplant. But this time… I don’t know. This time, everyone has been very very scared. There are a lot of uncertainties. It’s been way harder this time to answer the questions of an almost 12 and 9.5 y.o.

Plus it’s January. The 2-year anniversary of everything that happened 2 years ago.

So it’s not clouds so much as a full blown hurricane around here.

But today, he was doing better. And today, the surgical oncologist examined me for the 2-year appointment and said NED and I are still BFFs. Maybe this hurricane is turning into a mere tropical storm.

Jan 04

happy 2 years cancer-versary 2 me!

Cancer, 2 years later. I should pick an ‘anniversary’ date, but I don’t even know which date to pick:
December 21st, the date of the Mammogram
January 7th, the day the hapless secretary called and asked me if I wanted to schedule an ultrasound I had no idea I needed because my GP wasn’t actually back at work yet.
January 11th: the day I got a mammogram, an ultrasound AND an MRI.
January 15th: the day I told my dad. Also the day I found out it was 1.65 cm.
January 23rd: the day my friend called me to tell me I had breast cancer. Officially. Then, the day I posted on Facebook that I have breast cancer.
January 27th: highest of the highs: RETAILER OF THE YEAR. Lowest of the lows: knowing I would have to turn down all the associated perks because fucking cancer.
January 29th, the day I told my kids: Mommy has Breast Cancer.


This is the story of how I got Breast Cancer, with 2 years of hindsight:

it was December 21st and I was 6 months over-due on my mammogram. the tech asked me to stay in my gown. that had never happened before. Then she asked me to take more pictures on a different machine. I knew. right there and then. I have breast cancer. But christmas came and went and no one called me and I honestly didn’t give it a second thought. And then I went to work. and a clueless secretary called and asked me if I had scheduled my ultrasound. What ultrasound, I asked? Dee, my coworker extraordinaire, agreed: secretary with serious lack of life skills. I spent the entire day trying to reach my GP.

The rest is history. A LOOONg day with my friend D. first waiting to get the mammogram results, then an ultrasound and ultimately an MRI. If you have to find out you have breast cancer, D is the calm, zen, Dr-wife friend you want to take with you. I was ready to loose my shit at how long it took. But when the Dr. offered to refund me the ultrasound to I could get and MRI and I saw it as a money grab, D saw it for what it was: bad news that needed documentation.

A few hours later, I left with a CD of my tumour, which I dropped off at an oncologist’s friends house. Because when you find out you have the same cancer that killed you mother, you forgo the regular channels and you drop off your CD at your friend’s house.

It was a long weekend. so long. I knew. But really, you don’t want to know. you want things to be ok. So you wait tip they call you to give you an appointment for a biopsy. for that appointment, D is not the right person. You need Sarcastic and bitchy. hence you make A. take time off work and come with you. Because calm and zen won’t work when they drill holes into your breast and tell you the tumour is ‘exceptional’ – we all know what that means.


Here I am now, 2 years later. I am Cancer-Free. NED and I are still thick as thieves. But my fingers and toes freeze the instant I step outside in winter. For a life-long ski instructor, this is a real problem. Also my legs hurt. All. The. Time. For an imaginary runner, this is also a problem. I am waiting to tattoo something outrageous and large all over my chest so that in the 3 seconds I step out of the shower until I can get on a tank-top, I don’t cry.

I am not a super-survivor. I am not person who will write the inspirational best seller or get invited on the national talk-show. I am the still-kicking girl (woman, I know, but seriously, let me have girl for a few more years) who swears like a sailor and drinks wine and has become the go-to 3 am emergency email person you contact when your BFF finds out she has a mass unknown….

It’s been 2 years. I wish I could say I slayed the dragon. The truth is, we peacefully cohabit in a strange place called Cancerland.

Happy Cancer-versary Month to me.


Nov 13

What you can do to help a friend going through cancer

Last night, I got a message from an old friend. Not our annual ‘it’s almost thanksgiving so let’s talk about Jesus and the Kosher Turkey’ message (still one of my all time favorite things on the internet, ever). The kind of message that sadly pops up too often on my screen: ‘My friend is starting chemo. What can I do to help her?’

I never wanted to be an expert at this, but if I have to be good at something, let this be it.  I’ve written about this before, but with more time and distance from treatment, it might be a good time to go over it again.

My first stab at is was Social Niceties and the Etiquette of Cancer. I re-read that post often. If you take one thing away from it, let it be this: not everyone wants to hear they look good. Some people do. Figure out which one your friend is and then respect it. if she is going to be all fancy and put on eyebrows, tell her they look great. And if she is going to wrap a t-shirt around her head and walk around in pajama pants, don’t tell her she looks good. She knows she doesn’t and she doesn’t care.

The second stab was more of a list of do’s and don’t, and this is what i would like to expand on, especially when it comes to chemo, since this is what my friend was asking about last night: what can we do to help her through chemo?

  • our motto was ‘socks, charger, knitting’ – keep it simple but bring the essentials to get through the day. It takes a long time, it’s very boring, your phone battery will die.
  • I would say tablet and movies over books. I lost all ability to concentrate and read. I would read the same page over and over again and not remember what I was reading. People magazine is great, no brain cells required.
  • a soft blanket is nice. chemo rooms are notoriously cold and hospital blankets tend to be rare.
  • snacks: your taste buds are shot to hell and you might not have much of an appetite, but bringing snacks is a good idea because once you are hooked up to the IV, you are not going anywhere. My snack of choice was chips because the salt killed the metal taste.
  • Don’t let your friend go alone. This is a touchy one to write about, because I don’t want to make it sound like I didn’t have support. But because life is life and my chemo fell during everyone’s summer vacations, I went alone, a lot. and it was brutal. So lonely and boring. So if you know someone going through chemo, make sure *someone* pops in on them for a little while each time. Doesn’t have to be the whole day. You could just drop by, spill your coffee all over the floor and go back to work. It’s been done. ;-)
  • Pack her freezer. Hot meals are GREAT. A well stocked freezer is even better. Because of afore-mentioned lost tastebuds, and because if there are kids in the house, having the flexibility of picking what you feel like eating AND not having to cook is really the best gift you can give someone. Whatever you do, go easy on the banana bread.
  • Gaviscon! or any other heart-burn med of your choosing. Buy it and send it to their house in a care package. Because with chemo comes heartburn, and it usually comes at 2 am.
  • Do the reaching out. Don’t expect your sick friend to call you and say ‘hey, it would be great if you could bring me chips and People magazine’ NOT GOING TO HAPPEN. When people are fighting cancer, tasting metal, losing their hair and peeing red chemo, the don’t know that they want chips and People magazine. YOU are the one with the working brain cells, figure it out!
  • If the person has kids, offer to do something with or for them. Play dates, movies, food, LUNCHES, anything. the kids are going through hell too. And the parents are overwhelmed.
  • I had a housekeeper, so I didn’t have to worry about household chores. But I know this is a HUGE help. So if you can pop in, say hi, throw in a load of laundry or change the cat litter box, your friend will love you forever.
  • Don’t make blanket offers. ‘call me if you need anything’ is like saying: ‘good luck with that, I have no idea what to do so I’ll just pretend I want to help and I’ll do nothing’. Do something. Don’t know what to do? you can never go wrong with chips and People magazine

Nov 10

Beware of the rainbows

The thing about rainbows is that they only happen when there is rain. And rain comes from clouds.

Let’s start with the rainbows: I have been on a work-high, the main job is super interesting and I love it. I also picked up a few side projects, and a big client I did a brainstorming for a few months back is ready to move forward and booked me for some more stuff. Then I saw online that someone I met at a networking event lost her publisher, I sent her a FB message, and next thing you know, I am working with the most fun people ever, putting together a Kickstarter to get her book done.


DivingGirl loves her new team and is going super well. First big competition set for late November. RockingGirl is picking a high-school. Both of them participated in the #girlslearncode event at Google and loved it.

Rainbows. Everywhere.

Except that our furnace is broken beyond repair and we have to order a new one and out house is HUGE and OLD so it’s going to be an epic thing to fix. – Minor cloud.

Jay has been coughing and they saw <something> during a broncoscopy. Slightly bigger cloud.

Turns out it’s the aspergillus growing back, and it’s resistant to the awful drug he was one. Serious cloud.

Today, Divergirl’s platelets have dropped again and the doctor-I-don’t-like was not nice and told me to pull her out of diving and keep her on the couch. BIG cloud. (waiting to speak to Dr-I-Like before making a decision)

And now as I type this, Kickstarter is insisting we sub-title our video into English, even though the book is in French. OK, tiny cloud, but really not needed in this bad weather.

Oct 14

My Vagina doesn’t want your discount

Please pardon the serious post today. I got into a twitter fight with a businessman today over a discount offered to women only (the details are not important, I don’t want to give them any attention.)

I said that offering women-only a reduced price to a service was sexist. He told me I was taking political correctness too far. Some of my female friends were equally aghast, several of them shared news articles about it on FB. But a greater number of women were like ‘take the discount, what’s the big deal?’. I was frankly surprised at how many women were ok with taking a discount meant only for women.

The big deal is this: My vagina does not warrant me a discount. I want to get paid the same as a man, I want to have the same right and privileges as a man. So if I accept a discount based on the sole fact that I’m a woman, it’s wrong. Think about it for one second. If the promo had been in reverse and men only were offered a discount on the same service, there would be an UPROAR.

And yes, it extends to all women-only prices: ladies’ nights at bars: sexist. Again, think about it: Mens’ night, 2 for 1 beer…. UPROAR.

Just because it’s a discount and thus an advantage doesn’t mean it’s not sexist. It is the reason why I don’t have the big discount card all my friends have (again, not naming it), because it panders to women only. It’s wrong. It’s the reason why my skin crawls when someone calls me a mom-preneur…. wait, is my husband a dad-preneur? Why is being a woman who is an entrepreneur related to my status as a mother (as a mom actually. because moms are cute, mothers are serious)

So I will continue to vote, and demand equal pay. And in return, I’ll pay full price, thank you very much. Unless you want to offer your discount equally to men and women.


(the reason why this blew into a big thing is that I now have to pull out of a cancer fundraiser because it is held at this business and I stand by my principles and won’t go there)

Oct 10

#pinkwashing rant: the NFL

I am Canadian. I do not watch football, except maybe the Grey Cup if the Als are in it and it’s -22 and snowing, then it’s just an excuse to drink beer. I have seen the Superbowl a few times, mostly because it coincided with cruises with took or visits to my friend L in NJ.

I do know, however, that the NFL makes a HUGE show of <supporting> breast cancer in October. Everything turns pink. Don’t even get me started on the irony of an organization to looks away from domestic abuse sponsering events to ‘save the tatas’….. but when you buy your pink NFL jersey, so you know that you are in fact NOT donating a single dollar to research? Not ONE dollar…..



So they donate to ‘awareness’ campaigns but cannot name the organizations or locations that they donate to. An organizatino of that size, with that kind of money, could easily fund an entire research program, a special wing in a hospital, SOMEThING significant, and slap their big ol’ NFL logo on it. I would have NO PROBLEM with that, because if we see where the money is going, that’s fine. But to use this disease as a marketing ploy and not be clear about the amount and the destination of the funds? That is the definition of #pinkwashing

Oct 06

Daily Pink Rant: the toolbelt

My friend and teammate M found this at Canadian Tire this weekend and posted it on my FB wall.



My immediate reaction was: OMG I’m going to puke! To which N responded with: here, use this:toolbucket


Now, I did the research: they donate 1$ for each tool-belt or bucket sold, which on an 18$ tool-belt is not too bad, but again, I must ask:

  • how many pink tool-belts do you think they sell, so how much money are they donating? 1000? 2500?
  • how insulting and condescending is it to sell a pink tool-belt in the first place? I own A LOT of tools, none of them are pink!
  • If they really want to donate, couldn’t they just say ‘Proud supporter of the Canadian Breast Cancer Fondation’ on the tag and donate for ALL the tool-belts, including the manly ones? (PS, men get breast cancer too…. #shocker )


PS: I once tried to explain Canadian Tire to a foreigner: Well, it’s an auto-parts store that obviously sells tires. But also toasters and christmas trees and hockey equipment, you know, all things Canadian. And they give you Canadian Tire money back…..

Oct 05

Pink, well done

so not every company that joins #pinktober is evil.

CIBC is a Canadian Bank. And they have raised over 25 MILLIONS for breast cancer research. I have run it once, with my AMAZING friend D, the quiet one, the one who never takes the spotlight but takes my kids, the one who’s name is never in the posts, but makes sure everyone in my house is fed. D. is amazing beyond words. She runs the CIBC Run for the Cure, she ran it BEFORE I had cancer, she ran it while I had cancer, and she ran it again now that I am cancer free.

My other friend D, the first one who ever babysat SQ, ran in Toronto. I miss her so much. She has FOUR little girls…. that’s a lot of boobs to check!!!

And then, there is Nalie. My sister in cancer-ness. She was diagnosed after I was, but much, much younger. One time, I ran into her in the plastics waiting room. And then she took the awesome Rads team over and turned them into media rock stars (I never did have the balls to take video in rads). While I became the poster-child for The Weekend to End Women’s Cancers, Nalie became the poster-child for the CIBC Run for the Cure.

There are organizations and companies who get it right. I donated to Nalie, and if I haven’t bleed you dry yet, please make sure she gets to 20K. I know what it feels like to reach your fundraising goal!

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