Sep 04

The Second Time Around

Last Thursday, like most Thursdays this summer, was Tattoo-Thursday…. I was lying on Jose’s table, he was torturing me and making pretend I was having a good time, when my phone rang. it was the Real Estate Agent’s office, because we sold our house and are moving to a space-ship-kitchen-hooka-lounge-I-kid-you-not split level at the end of the month. Blah blah blah, it’s very rude of me to interrupt the artist. So it was SUPER rude when I took a call from my husband….. Except he said ‘it’s time. Second transplant at 8 pm. Can i see the kids?’ So I left the tattoo shop, drove to pick up Youngest, called oldest and told her to walk to the corner and we rushed to the hospital to spend an hour with him. Then my super-fabulous dad whisked them away and we waited, for hours, until they took him into surgery.

it was a lot longer this time. And when the surgeon came up, he was very cautiously optimistic: ‘the lungs are good, but it was a very tricky surgery and we had lots of problems. He is ok, but lets see what happens’

That was 1 week ago. During that time, I booked a mover, packed most of the house with the help of my amazing housekeeper, my Eldest started high school (grade 7 here) and takes the friggin city bus by herself there and back. But the husband, well, it’s still one step forward and 3 steps back…..

my new motto (and possibly next tattoo) is: Recovery is not linear.  Today was NOT a good day. Neither was yesterday. One would think it’s funny when your husband is hallucinating and thinks you are hatching a plan to kill him, but really, when he says it out loud, you are SO grateful the people at the hospital know you well and realize he is just very high on pain meds….

There are so very few people who get a second lung transplant…. There is no one to talk to about this. I’m ok, he’s ok. we are both fighters and maybe this will all actually work out. But I am so fucking tired. And my kids are so overwhelmed and sad and scared. But we have food and water and a crazy new house with a weird kitchen and a couch for 24 people, we are not stranded on the shores of a beach in Hungary waiting for asylum…..

Jun 17

Lâche pas! Té capable!

image

I haven’t been posting because there is nothing new to say: jay is still in the hospital, the kids are still having a hard time, the dogs are aging at an accelerated pace and I’m still juggling like mad to keep it all runnIng.  But let’s talk about that today: running. at some point during the winter, when late June seemed so far away and the treadmill was my only sanity, I agreed to run a crazy trail relay in New England with some of my awesome Killer Ladybugs possy. It seemed pretty crazy, 8 of us, 3 loops each in the forest over a 30 hour period. But whatever, I figured I had time to train. And I did. Now I am NOT a good runner, but I’ve been pretty dedicated and I stuck to it and I run 5K once a week, sometimes twice. I can do 10K on the treadmill, or on very flat streets if I walk a bit in the middle. But 10K on hilly mountain trails? Hell no!!!!

 

so with three weeks to go to the race (last week) I started running in the cemetary. It’s very hilly and there are way fewer runners than on the mountain. I’m still very self conscious when I get passed ten times in five minutes, so it’s better with fewer people.

today, I went left instead of right and immediately had a steep hill to climb. Greta, my legs are fresh, easy peasy. I figured it would be all downhill after. Wrong.

I got to the third incline and I told myself ‘just walk it’. Then something happened. This ultra marathoner guy that had passed me very early on came up next to me and ran up the hill, got to the top and ran back down just as I was slowing to a walk. I figured he was going back. Instead, he turned around again, slowed to a crawl next to me and said ‘lâche pas’ (don’t quit). Clearly I couldn’t talk to him because I was too busy trying to keep air going into my lungs,  but he trotted next to me silently all the way up the hill. When we got to the top, he said ‘té capable’, picked up his pace and ran away before I could catch my breath enough to say Merci.

 

so Merci, crazy ultra marathon guy. You have no idea how much I needed that today!

May 22

I hate everyone and everything

Had to happen at some point, right?

I hate your long weekend BBQ pictures.
I hate that you are going on a trip, even if it’s a business trip.
I hate your checking in at the local new restaurant that I am dying to try out.
I hate your mani-pedi, your blow-dry, your cut-and-color.
I hate people having lunch with each other.
I hate that you are stuck in line at Costco. At least you got to GO to Costco.
I hate that you get to go the concert and I don’t.
I hate that you got the job that I enjoyed so much.

 

I hate that hate everything so much. I am not that person. I am a very fortunate person with a roof over my head (for sale!) and food in my belly (thank you food fairies who keep bringing us magical deliveries) and the funds to pay for an assistant so I don’t forget to pick up my kids or feed my dogs.

But this life…. it is not enjoyable one bit. There are no more silver linings.
So if I don’t hit ‘like’ immediately on your next post, it’s not personal…. I just hate you right now.

May 15

DIY HAZMAT suit

Last week, the Lung doctor told me it was time to bring Jay home. I was very scared of how this would go, as the 24/7 watch he gets at the hospital was now all on me. I’m good, but I’m not that good.

Luck has it that @divergirl3000 had a big competition that weekend AND we were having an open house, so Jay went to the Transplant House, a lovely facility where people who had transplants or are waiting for transplants can stay to be near the hospital if they are from out of town.

His stay there was quite pleasant, he enjoyed the food most of all, the girls and I tried to make as little a mess as possible at home to keep the house show-ready and @divergirl3000 kicked butt and won TWO gold medals!  Everyone was happy, we picked him up and brought him home, hurray!

 

Now, if you have read this blog long enough, you know this is far from the end of the story. Because we don’t do happy endings around here…. First, his legs were VERY stiff and he couldn’t walk, let alone go up and down the stairs. This is why we are selling the house – it’s just too hard for him to get around here. But we made adjustments and I helped him down in the morning and up at night and it was sort of OK. Except on Tuesday there was some coughing….. And he slept a lot. Like all the time. Like couldn’t stay awake for one hour during the Agents’ Caravan…. I knew something was up. We called the nurse, she said monitor and call if anything changes, but it ‘s probably just exhaustion from being out of the controlled environment and into the real world.

Fast forward to Wednesday morning – poor Diver Girl goes to wake him up and says ‘Mom, dad had a big nose bleed’ Sure enough, there was what looked like dried black blood all over the bed. I mean ALL OVER. Everywhere. Frantic phone calls ensued and with the help of friends and family, we got him to the ER while Diver Girl and I headed for her own treatment at the Children’s hospital (because why should only 1 person go to the hospital when 2 can go?)

Long story short, he’s fighting a very very serious pneumonia. But the black blood? It’s probably not blood, it could be the nasty mold that is back. We won’t know for a few days (cultures take time), but I didn’t take any chances: when I left the hospital, I put on some rubber gloves and bagged all the bedding and threw it out. Too bad, it was my pretty house-showing set, but people will just have to visit my house with regular sheets….

 

Apr 27

The Things People Say

I ran into a neighbour from down the street this morning and said something about what had been happening and she said ‘I know I read your blog!’ (hey neighbour!). Two things came out of this conversation: 1) I owe you and update and 2) some people say really weird things (not her!).

 

1) Jay was home for a while, but 10 days ago he went back in the hospital with new symptoms, which it turns out were a very large polyp in his colon. Since he was already there and they need to run so many tests to re-list him, he’s been there being poked and prodded and getting sucked dry by vampires (they took 29 vials of blood in one shot!). This Wednesday, the transplant team will meet again. Then we will find out if he can go back on the list and what is going to happen: can he come home with some assistance or will he have to wait in the hospital for what could be weeks or even months….

In the mean time, the girls and I have been purging and sorting and are *thisclose* to being ready to show our house. We need to sell for various reasons, mainly because Jay cannot walk up and down the stairs, but also because if I can’t work, it makes sense to reduce expenses by reducing the size of our house.

 

2) So this lovely neighbour was inquiring about how we are doing and in the end she says ‘you know, there are just no words, can I just give you a hug instead?’ and she did, she gave me a hug and went to work. THAT is how you do it. How NOT to do it would be the following:

When I had cancer, I blogged about it. I wasn’t trying to become famous from it, it was just an outlet for me. But I did end up lending my bald face to The Weekend to End Women’s Cancers and did a few interviews and I was happy to do it because it’s a cause near and dear and I love the experience of walking the weekend.

Recently, 2 fellow local breast cancer survivors have both grown in their public spheres: one, who is a bona-fide fashion blogger, and her star is rising. The other, who’s blog for young cancer survivors is well known, got a job in local television as a girl-about-town. I am thrilled for both of them, I follow them both closely and one time, we were all in the same room and had a drink together (with yet a 3rd cancer survivor who has written several books).

Now, there is a person (let’s call her Miss Nozy Pozy), someone I don’t know ‘in person’ but who was at the walk and heard my speech and now follows this blog along with all these other people. When TV Girl made her announcement, I commented and said ‘well done, I told you you would take over the world!’. This is when Miss Nozy-Pozy, side-messaged me and said ‘you know, that could have been you, but you are so negative all the time. N is SO super positive, that’s why she got that opportunity’.

OK. Now, I adopted from China so I am totally used to crazy people telling me insanely inappropriate things in public places. But this? Seriously? First of all, I don’t know you. Just because you read my blog doesn’t mean you know me. Second of all, I don’t want that job. Never did. And if you find me so negative, why the hell are you still reading this blog????

In the mean time, I will keep accepting hugs from kind neighbours. And wallow in my deep dark pit of negativity and not become a media darling.

Apr 11

I have run out of weather metaphors

Clouds. Storms. Hurricanes. Tornadoes. Tsunamis. Forget it. We have now reached utter and complete Clusterfuckness.

 

Jay spent 62 days in the hospital. He came home, hoping to slowly recover from what was called both an aspergillus infection and a sever pneumonia. Within 2 weeks of being home, he was back on oxygen. It’s been downhill from there. His FEV1 is now 24%, which I believe is lower than before his transplant.

Last Wednesday, the doctors finally used the word they  have tiptoed around and avoided for 4 months: REJECTION. There is no hope of recovery. His only chance is a second lung transplant. Yep. Total clusterfuck.

We sat on the news for a week as we tried to wrap our heads around it. Is it statistically even possible? Is he healthy enough for a second transplant? What will going on the list again mean to our family?

In short order, this is what is going to happen: we need to sell our house and move to a house with no stairs so he is no longer prisoner. Right now, he’s been sleeping in the living room and has access to a half-bathroom, but taking showers requires going up or down a set of stairs and that is an epic undertaking. And no, before you suggest putting in a lift, out house cannot accomodate one. And in the long run, the smart decision, though it breaks my heart, is to sell this house we love and move somewhere where he can be more comfortable.

I am not going to pretend I am ok. I am going to be perfectly honest: I don’t know how I can possibly do this a second time. Being on the list, it’s very stressful. It’s a lot of waiting and doing nothing. No travel. TONS of doctors appointments that take over your life (never mind that I already manage tons of those for Diver Girl) He will get sicker and weaker. I was just getting some great contract offers for work. I had to cancel or turn them all down. My job now is 100% getting Jay and the girls through this. Again. And hope that none of us turn to hard drugs.

The girls initial reaction was what you would expect: It’s not fair, why us again, why didn’t the doctors do more to fix it sooner, all of the things that I have asked myself, they asked to. They had very different ways of handling it. And I know in the weeks and months to come, there will be a lot more questions and surely some questionable behavior. Moving is going to be hard on them. They love this house. We won’t be having epic pool parties anymore. All of the special things about this house – gone. For sure, we are very fortunate. We can afford to move and find somewhere else. I tell them all the time that it could in fact be much worst. But it’s sort of hard to focus on the good things when the bad things just keep punching you in the stomach. Over and over again.

 

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.

 

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