Aug 22

On Journeys and Clouds

I called this blog Outrunning the Cloud because I fancied myself a runner, but also, because I felt that for most of my adult life, there has been some sort of cloud over my head. I might have managed at times to get rid of one or the other, but somehow, another one always pops up. I’ve been reflecting a lot about this the last couple of days.

This weekend, I will be walking for the 6th time. The first time, the cloud was the return of my mom’s breast cancer after remission that prompted me to lace up my shoes (that and pretty much Amy forced me to). Last year, it was my own cloud that kept me going, even though my toenails were falling off and I wanted to puke with every step. This year, I am cancer-free. NED. I should be rejoicing and walking on air. And I am, a little bit, because with all of YOUR support, this just happened:

11000

My goal had been 8000$, which is what I had raised last year. I secretly hoped that I could raise 10,000$ for the 10th anniversary, but it does get harder and harder to raise money each year. When I saw it go over 11,000 this morning, I was in an elevator on a construction site at my new job. With me, coincidentally, was a long-time work friend who years ago was involved with The Weekend. I flashed him my phone and his eyes bulged out of his head. He could really appreciate how much effort went into this. So THANK YOU!!!!

Yet, the clouds have not completely parted. My poor kiddo is not responding to the standard treatment for ITP. It’s still too early to move onto more serious options, so we have to keep doing the weekly IV. Her veins are getting tired and blew twice yesterday, so she had to be pricked 6 times to get through the treatment. She will be missing school 1 day a week and can’t keep diving for now. She is PISSED. I get it, I learned to knit with one hand the year I broke my wrist because I couldn’t imagine not knitting for 8 weeks….

So this weekend, I will carry my mother in my heart with every step of the 60 kms. And I’ll be keeping my eye on this new cloud, I’m ready to kick it’s ass too!

 

Aug 12

NED & ME, Forever

I can only think of a few ways to permanently declare your love for someone or something: carve it into a tree, spray paint it on a rock on the side of the highway, or tattoo it on your body.

2 posts ago, I told you about my new friend NED. People keep asking me if I am in remission and I answer ‘No, I’m Ned’.  Today, I went to speak to my tattoo guy (yes, I have a tattoo guy) about doing a chest piece to cover my scars. Not fake 3D nipples, but rather some sort of artsy thing with doodles and patterns and maybe a needle and thread… I don’t know yet, it’s a work in progress. But while I was there, I asked him to stamp me permanently with NED. Like an old school office-stamp, as per A’s suggestion.

 

 

 

NEDpic

 

There you have it. Ned and Me, Forever.

In other news, I have reached my set goal of raising $8000 for the Weekend to End Women’s Cancers in less than 10 days….. but now I’m thinking I can do better, I can do $10,000 for the 10th anniversary…. If you can spare even 10$, every bit helps…. endcancer.ca/goto/champouxv

Aug 01

It’s all relative. And sometimes, it’s a little bit related.

My kid got another IV of immuno-globulins today. She was at 11,000 this morning. Close enough to the magic treating number of 10,000. But because this keeps not getting better, we have to investigate further. And the next step is a bone marrow biopsy on Tuesday morning. A big needle in the back of her hipbone under anaesthesia. I was expecting it, so I wasn’t totally freaked out, but I was a little bit freaked out. The image of her lying there with a needle punched into her bones… argh.

Then, we sat in the onco waiting room, to get a day-bed for the IV. We ran into the 11 y.o. badass from last month, who is finally nearing the end of treatment. I thought about how she not only had marrow biopsies several times, she had a piece of her hip removed. It put my kid’s situation into a little bit of perspective. I freaked out a little less.

Then we met another little girl. She’s 10, let’s call her Mai. Mai is Chinese, her parents speak Cantonese and a bit of English but not enough to understand when the doctors explain things. Mai speaks Cantonese too, but thanks to our wonderful immigration policies, she is fluent in French, doesn’t speak any English. So there was a translator from the hospital, to listen to the doctors and make sure that both Mai and her parents understood everything. There was a lot of arm gestures. From across the room I understood that Mai was worried about her new port and was really upset that her hair had started falling out. I felt really bad for her.

My kiddo got called for her bed, so we went in. Next to us was a younger girl who was sort of alone. Her mom was in the hospital but she was running around making appointments and getting answers to questions and she kept popping in and out. There is a Child Life worker there that sits with the kids when they are alone, but it was a super busy day and she was taking care of lots of kids. I saw that this little girl was stretching her neck trying to see the movie we had put on in our cubby…. It took me less than 3 minutes to rearrange the beds and curtains just enough that they could both watch Brave (how appropriate) from their respective curtained-cubbies. Together but not. Big smiles from the little girl, big smiles when her mom came back in. A silent nod of thank you.

Eventually my kiddo fell asleep, she always does, those IVs take 4 hours, and I saw Mai’s parents very worried every time the bottles would be changed, the IV would beep, etc. The translator wasn’t always there. The nurse would speak in French to Mai, who would translate in Cantonese to her parents, who would then repeat it back in English to the nurse. I felt so helpless. I wished I could do ‘something’.

I walked over and I spoke to Mai. Showed her my port scar. Told her it was going to be ok. We talked for a minute, then she translated for her dad. The look on his face… he looked, relieved. We kept talking. I told her I would bring her one of my scarves when I come back on Tuesday. I showed her my long haired pics and my bald pics and I told her it would come back. Her mom came in the room. I pointed to my sleeping kid and said she was from China. We talked some more…. .Her mom is from the SAME PLACE in China as my sleeping kiddo. WHAT ARE THE CHANCES? Really, think about that for a minute. China is huge. The planet is huge. And yet, this mom is from the same tiny tiny place….

I still feel a little panicked about the bone marrow test. But you know what? It’s going to be ok. It could be so much worse. It’s going to be some rare auto-immune thing, that much we know, we just don’t know which. It could be much worse. It’s all relative. And a little bit related.

Jul 25

My new friend Ned

Technically it’s all capitals. NED. No Evidence of Disease.

They don’t call it remission anymore. It means at this moment, right now, I am cancer-free. Technically, I have been cancer-free since the day they cut the tumors out of my body, but today is the first time the oncologist typed it in his computer in my file. Status: NED. Just like that, 3 little letters and it’s all over.

I’m hoping to be one of those people that goes forward with positivity and doesn’t let the ‘what ifs’ creep in too much. But honestly, it’s going to be hard. Luck hasn’t exactly been on my side. One could say if something bad can happen to me or my family, it usually does.

Last night, my girlfriends came over for (a lot) of wine (too much really) and a little celebrating. Celebrating our last few nights with kids at camp, my new job, a friend’s new job, and the end of this cancer-journey (pre-emptively). There was talk of finding a witch-doctor. To get rid of the clouds. To de-jinx me or whatever you would call it. Yes, we have gotten to the point where we will be burning sage and chanting.

Sure, some things are turning: I have clients. Real paying clients who call me and ask me to make them budgets. And I got a job for a super cool person that I am very excited to start soon. But my kid is still sick – good thing I go started on the client today, because I just found out I have to take her to the hospital again on Monday. My husband is still sick. We need to find that witch-doctor, stat.

In the meantime, I’ll focus on my new friend Ned. Don’t be surprised if I end up with a Ned tattoo soon. Seriously.

Jul 22

Port-Free and Employed

When I last wrote to you, things were pretty fucking sucky. My kid was lucky to make it to camp, but she had to come home 3 different times for an IV. I did manage to go to Windsor to party with my friends, but even that turned into an adventure when a trail derailment cancelled my train and I had to drive the 865 kms between my house and Windsor. (of course, as soon as I hit the road, the trains started running again)

Last weekend, I went to Chicago with L. We had a grand-old time and we both bought new shoes and new clothes.

Seeing my friends did me a world of good. There is nothing I can do to change many of things that happen to me, but when I can squeeze 2 or 3 days of happiness, it makes the rest a bit easier.

Today marked a momentous day in my cancer saga: my port came out. Finally. Not that it hurt, but it was bothersome, and I had to keep getting flushed every 3 weeks. And it was a constant reminder of what I had gone though. The scars on my chest I can’t do anything about, but this, I could. So it’s gone.

Yesterday was also a momentous day: I got a job! I’ve been getting small consulting contracts here and there, and 2 weeks ago I stumbled upon a really interesting one for a big out-of-town corporation. But it won’t be many hours, although it will probably be a long term thing. This new one though, I am VERY excited about. It came through a friend who gave me a glowing recommendation. I met with the people last week before going to Chicago and we met again yesterday. I won’t go into details because it wouldn’t be fair to my new employers, but I will say this: I am very excited. I will work with great people, in a great office ( I GET TO LEAVE MY HOUSE!) and the work itself will be challenging and interesting. Most importantly: I can wear real clothes and fancy shoes! So long jeans and Birkenstocks!

Jul 03

The Olympics of Suck

Last year, when things were piling on, my friend Ellie came up with a really funny name, which I am not going to use because it’s sort of a secret-society thing. It was in the vein of The Olympics of Suck, but way funnier. In this secret society, we would vent about the shitty things that happened to us and try to out-do each other. Trust me, I was a podium-winner every time. Golds mostly.

 

Last we spoke here, my youngest daughter was diagnosed with ITP and had to get IV treatment in the children’s oncology department, because really, what is the one place I never wanted to go to in my life…. Well, the first treatment brought her right up to 137,000 and we thought, great, that worked!

Except it didn’t. She plummeted back down. So she had a second treatment. That one did barely anything. She only went up to 37,000. But the doctor was very nice and the camp was SUPER accommodating and she understood that she had to sit out the sports (except swimming) and be super duper careful not to fall or cut herself, so off she went to camp on Tuesday at 1pm.

On Wednesday at 1 pm, after a routine post-transplant blood test, my husband ended up having an emergency broncoscopy which confirmed that he not only still had aspergillus, but now he had pneumonia. By dinner time, he was in an isolation cubby in the ER. He is now on the post-transplant floor, getting IV antibiotics and he will be there at least until Sunday.

I’ll have to visit him early on Sunday. Because then I have to drive up north to the camp to go fetch my youngest child. Who’s platelets were tested again today and she has dropped back to 27,000 and needs to be treated again on Monday. Thankfully, the camp is being super nice and letting me take her out and bring her back. I can’t imagine how upset she is going to be when they tell her I’m coming and she has to get and IV again. The only thing that will probably cheer her up is that I am picking her up on my birthday. So instead of sending me a letter 5 days later in the mail, she’ll get to see me.

World Class Olympic Winner of Suck.

Jun 26

An 11 y.o. Badass

My youngest, who is 8, almost 9, went back to the hospital today to check on her platelets. We were SHOCKED that they had dropped back to 27,000. No Bueno. She needed another IV of Immunoglobulins. Camp is up in the air. We’ll have to see if they go back up.

So we spent the day in the kids oncology ward again, because that is where hematology treats kids, even the ones who don’t have cancer.

Last time she was pretty much alone, today, there were several girls waiting for chemo. They have to pee clear to get the go-ahead, something I didn’t experience.

Anyhow, there was an 11 yo in the bed across from my kid. Same age as my eldest, grade 5, going into grade 6. Except she’s been out of school since November. Bone Cancer. Which spread to her lungs.

At first, she was eyeing us with suspicion, why were we there, why did my daughter still have hair, what kind of treatment was she getting…. So I scrolled in my phone and found a picture of the day I went bald. And I showed it to her. And my port protruding from my chest. And then she got chatty.

We talked about peeing red chemo and how it hurts when your hair falls out. We compared scars and the number of radiations we got. All in all, her treatment will be 9 months. She couldn’t believe mine was 17 months. I couldn’t believe she was 11 and dealing with this. PS: she is going to be fine. Last biopsies revealed all the tumours were gone. The last 7 rounds are a precaution.

I made lots of inappropriate jokes and thought her to sing Igloo Igloo to get her to drink lots of water to get clean pee. Don’t worry, her parents were right there. Her dad thought my ‘Skittles make your platelets go up’ plan was a good one and went to get her a bag, just like my kid. I also offered to pee in a cup for her, since she was having a really hard time getting clean pee.

On the one hand, I never want to have to spend another day there, watching my kid hooked up to an IV, fighting for her platelets to stay at a normal level (which is around 150,000). On the other hand, I kind of want to hang out with her again.  I mean, I don’t have a job, maybe I could just go hang out with her anyhow.

Jun 19

Sometimes, there is cake

This week was really one of the hardest of my life, and that’s saying a lot, post dying-mother-lung-transplant-breast-cancer. Sick kid trumps everything.

Tomorrow morning we go back and find out if the platelets kept rising. please, if you pray, do so. We need for this to have worked. This kid needs to go to camp like planned.

In the mean time, I was pretty much a waste of a human being this week, so the village rallied around us. There was fish and rice from J., cookies and lemon squares from S., a full dinner and dessert from R. who lives down the street AND from R. who lives all the way in N.Y, the other J dropped off party sandwiches, which are my daughter’s favorite thing, along with the craziest water/disco iPod speakers AND wine for me. And then, today, R’s SIL, whom I have met but a couple of times, sent this over:

 

 

 

 

 

 

 

 

 

cake

 

I know. I can’t even.

People ask me all the time how I keep going. Just yesterday someone at pick up (hi!) asked me what I was ‘on’. And I was going to write this long post about getting help to get through the bad stuff. But here is the truth: it’s not the Zoloft or the Effexor, it’s not the therapists, it’s the friends. And the kindness of people who barely know us. And send us wedding-worthy cake, just because our life sucks.

Jun 16

Fear factor

UPDATE: the IV worked, she kicked up to 44,000 this morning. still need more, but she’s ok. Diagnosis by process of elimination: ITP.

 

I thought I knew what fear was.
I was pretty scared the first time my husband spend a week in the hospital and I was alone with my newly adopted second child who wanted nothing to do with me.
I was pretty scared when I was in the room when my mom took her last breath.
I was seriously fucking scared the day the beeper rang and my husband went in for a double lung transplant. And then got pneumonia and spent 13 days in the ICU.
I was really seriously fucking scared when I found out my one stage 1 tumour was in fact two stage 3A tumours.

But you know what? Take all of those, put them together, multiply them by a hundred and you still won’t get to the fear I experienced on Friday. My youngest, who is an athlete and though and the sunshine of our lives, has been bruising something fierce. Not just the bruises from her double flips at diving. Black and blue bruises that make it look like we beat her. They just show up, no explanation.

We made an appointment with her doctor last week but then we postponed it because my husband was sick (again) and we couldn’t swing both appointments. We finally took her this Monday and her doctor recommended we get a clotting test, just to see. We took the test at 8 am on Friday, expecting results in 5 to 7 days. By noon they called us and asked us to bring her to the children’s hospital to see a hematologist, stat.

Her platelets were so low, she was at risk for internal bleeding.
That, my friends, is fear.
We still don’t know exactly what is going in. Probably ITP. Hoping ITP. Because the other options I don’t want to think about.

Meanwhile today she is having a four hour IV treatment. In the oncology day unit because that is where they do such things. Getting the IV into her little bruised arm took two nurses. She screamed and cried and I felt like the worst mother in the world for having postponed the appointment last week. If only we had gone, maybe we could avoided this….

This is fear like I have never known before.

Jun 10

Raise your glass

that’s it. I am done with cancer. Well, I am done with treatment. And tonight, for the first time, I actually said out loud to a bunch of strangers at a fundraiser that I did NOT have cancer anymore. I’m not going to say it’s behind me, it never will be, but I am hopeful that right now, in this moment, there are no cancer cells in my body.

 

I’ve been sitting on this bottle for months, waiting for the right occasion. here it is. Cheers!

 

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And a special toast to the fellow cancer ass-kickers I got to meet in person tonight, Nalie, Lolitta and Maude. Cancer sucks, but sharing the experience with such inspirational ass-kickers makes it a little easier.

 

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