On Writing about Illness

Mommy boots and Nate boots.

Mommy boots and Nate boots.

I’ve contemplated how best it is to share this story, this experience of being a young mother, fighting this illness. I started this blog to keep friends and family in the loop about what’s going on. But I also started it as a way to get back to writing.

I used to write a lot: short stories, a personal journal, academic papers, and I enjoyed it. But I was always somewhat nervous about sharing my writing. At academic conferences, I would stand up and read my papers. I would submit writing to books and journals and it was always with a sense of trepidation. And a few things have been published. But I always thought, what if people didn’t like what I had to say? When I was diagnosed with breast cancer in December, this fear began to fade away. (It was, unfortunately, replaced with plenty of other fears.) I had always wanted my writing to be as polished as possible before sharing, now I just want it to be as honest as possible.

Along with the diagnosis, there also came a sense of wanting to be more connected. I don’t post often to social networking sites like Facebook, mostly because I felt somewhat strange about sharing my personal life with so many people. Yes, they were all technically my “friends” but many of them were people I hadn’t been in touch with for ages. Wasn’t it strange to share so much with acquaintances? I loved getting updates and seeing pictures from other people. I just didn’t reciprocate much. I didn’t love the idea that little Nate would have an online presence far before he was able to control it, and so I shied away from posting pictures of him. But now, I think I get it, that desire to be connected, that desire for publicness. I want to feel more connected to people, to people from my past and perhaps to some new people too. I want to say, “Hi, remember me?” or more accurately: “Don’t forget me, please.” I want for people to see my little family, and I want to say, “Look at my son. Can you send him a little love?” I also want to say, “Check your boobs, lady friends.”

So, if you found your way here through Facebook, I say, “Hello old friend. Thank you for stopping by.” And please feel free to follow, share, or post a comment. I am happy to tell you that I am now a mother, a wife, and a doctoral student. I am also battling breast cancer.

There has been something profoundly moving about hearing from all sorts of people sending their positive thoughts my way. I want to believe that all these loving thoughts accumulate into something powerful. So here I am, blogging about something very personal, letting down my guard and being open to the world, to connections old and new. It’s my little way of saying, “Universe, you may be messing with me now, but I’m getting ready to mess back.”

This past weekend, we went to a friend’s cottage a few hours north of Toronto. With surgery coming up in one week, we desperately needed to unplug. Here are a few pics from a lovely weekend (and thanks to E and Z for good cottage times):

All smiles at the cottage.

All smiles at the cottage.

Nate with his dad.

Nate with his dad.

Checking out the dock.

Checking out the dock.

Nate and Pooh, hanging at the cottage.

Nate and Pooh, hanging at the cottage.

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Some Awesome Things

Some awesome things in no particular order:

1) No chemo this week!! I still have lots of doctor appointments to juggle (4 this past week), but so happy to have no more chemo! The bruises on my arms from the injection sites are fading and I am happy to report that I look less and less like an intravenous drug user.

2) The CT scan confirmed that the tumours in the neck area are no longer detectable!! Amazing.

3) Nate rolling around in a beautiful blanket sent by some very thoughtful colleagues.

Nate loving life.

Nate loving life.

4) My cold is basically gone.

5) A special treat of brunch at the Four Seasons with two amazing girlfriends, courtesy of the Robins – thank you! It had been so long since I’d be out for a meal, especially somewhere so fancy, that I felt like a complete tourist, and found myself exclaiming – “this is so beautiful!” over and over.

6) A hat sale at the wig store in the hospital!

Retail therapy: my new hat.

Retail therapy: my new hat.

7) You guys! Thanks everyone, for being so awesome, for sending support through email, phone, mail; for traveling here by plane and car; sending treats of food, flowers, and drink. You have provided some much needed comfort!

8) Mitchell.

Some not-so-awesome things:

1) A few side effects are lingering. For example, my feet still get crazy itchy if I try to walk for too long, or walk too quickly. And my nails are turning brown and look a bit warped. My energy levels are improving but I still feel tired easily.

2) I walked into a bra shop because there was a sign that said, “Now specializing in mastectomy fittings.” But the moment I started asking about it, I started crying. The two salesladies were very sweet. They handed me a business card and  then I promised to come back when I was ready. I am definitely a bit weepy these days. I suppose I had been focusing so much on all the physical aspects of chemo that I’m only now really processing how much my life has changed, and how much it will change still.

But all in all, the awesome things far outweigh the not-so-awesome things! And that in itself is awesome.

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Small steps

Nate celebrating life in general. Photo courtesy of cousin Erin :)

Nate celebrating life in general.

I am finally starting to feel better from the last round of chemo. The cold is slowly going away, and the side effects seem to be getting better. In fact, I was feeling well enough to participate in an academic conference this weekend! I had applied to present a paper at the University of Toronto before I was diagnosed, and when I was accepted, I decided to do my best to be able to participate.  Throughout my treatment, the conference felt ages away, a small dot on a distant horizon. But as my last chemo session came and went, I realized that it was time to get back to my research.

I both looked forward to and dreaded the conference. As I was preparing, I relished in all sorts of little things that would have seemed mundane before my diagnosis. It felt good to prepare my presentation, to put together the power point, to jot down some notes and potential questions. Yesterday (the day of my presentation), it was nice to put on a blazer, get on my wig, and paint mascara onto my four remaining eyelashes.

At the same time, I also worried about the conference. What if people could tell that I was sick? What if I started talking and suddenly blurted out, “I have cancer”? What if, while taking off my toque, my wig accidentally came off with it? Well, I’m happy to report that none of these things happened. I participated in the conference, presented a short paper (that seemed to be well-received), and as far as I know, no one in the room could tell that anything was wrong.  And it felt good to present, to stand up in front of a room full of colleagues and discuss research, and to engage in conversations about things unrelated to illness. I got some great feedback on my paper and it made me feel inspired to get back to my dissertation.

It was also great to take a small step back toward my life before the diagnosis. The last few months have been an exercise in letting things go, saying goodbye to all sorts of things. In addition to the things I’ve already mentioned on the blog (losing my hair, being restricted in where I could go etc.), I also had to let go of the goal of graduating this spring. It was just one of the many changes and adjustments we had to make so that I could focus on getting better.

I’m sure there will be more letting go in the future, but the conference was a nice reminder that life and research continue, that there is still room for inspiration, and that letting go doesn’t mean giving up.

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Lifting the Clouds

In the past, I’ve tried to explain what chemo is like and it always ends up being something like this:

 Imagine you are having the worst day. You wake up with a searing headache, you spill coffee on yourself, you miss your train, you lose your keys, a guy accidentally hits you in the head with a cardboard box at the mall (this happened to me once), your computer crashes, etc, you get the idea. And then, on top of all that, imagine that you have cancer, and in order to beat it, you have to have poison injected directly into your veins.

Okay, so I don’t know if that really gets at it, but let’s just say, chemo sucks. With the great news about the MRI results and ringing the bell, I was feeling pretty strong. (And thank you for all the awesome comments and well-wishes! I loved them all.) But this round, I have managed to catch a cold. And it kind of feels like I am nearing the end of a grueling marathon, and I’m down to the last 1km and someone has handed me a 10 pound weight to carry with me over the finish line. It’s enough to make me want to pull my hair out. Oh wait.

Usually, Friday is the worst day, and Saturday and Sunday are tough but better. Often, by about Sunday afternoon or Monday morning, I feel a little like the clouds are beginning to lift and I’m getting out of the chemo daze. This time though, it’s been a little slower, a little harder, a little more of a battle. Friday and Saturday were gorgeous and sunny here and I alternated between cursing the nice weather and appreciating that the seasons are beginning to change, a good reminder that despite my rough recovery time moves on. This weekend, Nate started a new round of swimming lessons, two sets of grandparents showered him with attention, friends and family came by to visit, and Mitchell, as always, continued to take great care of me.

Nate being adorable in the changeroom at his first swim class with his dad.

Nate being adorable in the changeroom at his first swim class with his dad.

The cumulative effects of the last 8 rounds of chemo, plus this cold, are tough, but even in my darkest moments, I know that the clouds will lift. It may take a little bit longer, but it will happen. I remind myself of all the support and love being sent my way and it makes me feel stronger.

And it reminds me too that sometimes the clouds simply lift, but then other times, you need to lift them.

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Happy Tears

In the chemo chair with my flowers from Nurse Shelley. Ready for my last treatment.

In the chemo chair with my flowers from Nurse Shelley. Ready for my last treatment.

I have some great news. First of all, I got my MRI results and have found out that the tumour in my left lymph node is essentially gone! And the tumour in my breast has shrunk down from a whopping 15 cm to less than 1cm! What the what? So amazing. This is what the MRI report says:

“A small amount of faint residual non-mass enhancement [in the breast] is identified measuring approximately 1cm. No suspicious mass enhancement is identified in this area. Overall there has been significant improvement in the enhancement noted in the upper outer quadrant of the left breast. The previously noted mass measuring approximately 15cm in greatest dimension.

Additionally, the malignant lymph nodes in the left axilla are no longer visualized. No abnormal lymph nodes are noted in either axilla.”

That is a whole lot of words that basically make me cry happy tears. And it’s been a long time since I cried happy tears. I have a CT scan next that will also provide more info, particularly about the tumours that were in the neck area. The MRI was only for the breast and under my arm.

Also, today was my last chemo treatment! All went well. At Princess Margaret, when someone finishes chemo, they get to ring the “bravery bell.” I felt a bit wonky and tired as I walked over to it, but once I got my hand on the rope to ring that little bell, I was surprisingly awake. Ringing that bell felt awesome. It made me feel invigorated and, for lack of a better word, alive. Everyone nearby started clapping, and again, I cried a few happy tears.

This may be only photo where I do not have a crazy, maniacal smile on my face. I loved ringing that bell!

This may be the only photo where I do not have a crazy, maniacal smile on my face. I loved ringing that bell!

I know the next few days will be up and down, but knowing that this is the last time I have to deal with all the chemo-related side effects makes me feel strong and so, so ready to be done with all of this. The next step is surgery, which will also be hard, but that’s okay. I keep telling myself this little mantra: The only way out is through. And it makes me feel better and ready for whatever comes next.

Nate with my post-chemo celebratory flowers.

Nate with my post-chemo celebratory flowers.

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The week ahead

On our walk.

On our walk, Nate crashing some wedding photos.

Because my chemo is on a two week cycle, the first weekend after chemo is tough, but the second weekend is much better. And this weekend has actually been great. My energy levels have been close to normal so I was able to visit with friends (thanks for coming over!), go for a walk, and eat yummy food. I even made muffins (which never happens, even when I’m well.) And because I have a stamp set that doesn’t get used enough, I stamped a little sign to mark the occasion. I was originally going stamp, “Cancer can bite me,” but decided instead on “Happy weekend muffins.”

The muffins!

Banana chocolate chip, thank you very much.

I’m glad I got to enjoy the weekend because the week ahead is going to be busy. Here’s the rundown:

Monday afternoon: the arrival of parents to lend support for the coming week. (yay!)
Monday evening: an MRI scan in preparation for surgery in May.

Tuesday: a pre-chemo checkup with the oncologist and a round of blood tests.

Wednesday: chemo day. Usually on chemo days, I’m at the hospital for several hours. Within the first hour, they give me a massive dose of Benadryl (straight into the bloodstream!), which knocks me out, often for the rest of the day.

Thursday: On the day after chemo, a nurse comes to my house to give me a shot. It’s a drug that is meant to boost my immune system. One of the side effects is muscle and bone pain. Booooo! Still, I often feel pretty good on Thursdays. Sometimes I make it out for a stroll or have lunch and do a little work. (More parental support arrives. Double yay!)

Friday: Friday is often my worst day.  I hit an all-time low in terms of energy levels and my emotions suddenly swing all over the map.  On the Friday after chemo, I kind of feel like falling down on the floor and staying there.

Saturday and Sunday: These are generally low energy, moody days too. But sometimes they aren’t too bad.

And by Monday I start to feel more like myself. Still tired, but better. My skin looks less pale. I have the energy to get dressed and maybe put on some makeup. These days, my make-up regiment involves some eyebrow shading because unfortunately, it appears that I celebrated the persistence of my eyebrows a little prematurely. They are still hanging in there for now, but definitely thinning. And my eyelashes appear to be making a break for it as well.

The last few months of chemo have been tough. I’m so glad that it’s almost done. (This is an understatement.) Hopefully, the coming week goes smoothly. Fingers crossed.

Because every boy needs a circus tent. (Thanks to May, Yves and Noa!)

Because every boy needs a circus tent. (Thanks to May, Yves and Noa!)

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Things I Am Looking Forward To

Because we’re nearing the end of chemo, I’ve let my mind turn to all the things I am looking forward to once it’s done.  (I have a feeling this will be a recurring theme in future posts.) Here are a few:

1) The little things:

There are so many little things that I’m looking forward to doing once chemo is done. Because my immune system has been compromised, my doctors have cautioned against a whole slew of things that I usually do. For example, I was warned against taking public transit (germs), going anywhere too crowded (germs), having mani/pedis (germs and chemicals), and drinking alcohol or caffeine (for reasons I forget). So, the month between chemo and surgery is going to be a month of taking transit, mingling in crowds, mani/pedis, and drinking.

2) Having hair again:

So, the hair thing has actually not been that big of a deal. Yes, it sucks to not have hair, and as the most visible marker of cancer, it is a tough one psychologically. But there have been much worse things to focus on: chemo is truly the hardest, most horrible thing I have ever had to endure, and surgery I’m sure will be a close second. At home, I mostly wear a hat (because my head gets really cold without hair), but when I go out I often wear my wig. Unfortunately, it is sometimes itchy and often hot. I’m excited for when I have enough hair to stop with the wig.

When my hair started to fall out, we just decided to shave it off. This is a pic we took mid-shave.

When my hair started to fall out in January, we just decided to shave it off. This is a pic we took mid-shave.

3) Halloween.

Okay, so I know that this is really far away, and pretty random, but I’ve realized recently how much I love Halloween. And, I’ve decided that I am totally not going to leave Halloween costumes till the last minute this year. Last year, Nate got two costumes: a pumpkin and a unicorn. (See adorable photos below.) And guess how many I got. None! I just didn’t get my act together to make it happen. This year, I vow to shop early and get myself at least one awesome, happy-making costume. (Mitchell, I will get you one too.) I think my wig would work well with Snow White. And I kind of can’t believe I haven’t been Snow White ever in my life.

Nate as a pumpkin.

Nate as a pumpkin.

Nate as a unicorn. (Inspired by Stevie and Leila.)

Nate as a unicorn. (Inspired by Stevie and Leila.)

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