How to Survive Brain Surgery

I am happy to report that I was discharged from the hospital on Friday, 8 days after brain surgery. Every day gets better.

This morning I decided to make scrambled eggs. I showed Nate how to crack an egg and I was almost overwhelmed by the joy of the moment. The look of curiosity and wonder on his face will keep me going for days. (Oh, simple pleasure, thank you for stopping by our house this morning. Please stop by often.)

I am so happy to be home. Nate gave me so many cuddles and giggles on Friday, my bruised body and soul finally felt nourished.

The last many days have been very hard. These were some of the strategies I used to keep my spirits up:

1) Lots of tasty food. This is not the time to deprive yourself, eat all the yummy stuff you want.

These cupcakes were special delivery from my favorite bakery in Montreal.

Reema, thank you for being an amazing baker! And thank you, Tynen and Leila for the delivery!

Reema, thank you for being an amazing baker! And thank you, Tynen and Leila for the delivery!

My mom's homemade chicken karaage (Japanese fried chicken)

My mom’s homemade chicken karaage (Japanese fried chicken)

2)Cry, laugh, sing. Everything is difficult right now, and you probably feel like you’ve been dealt a really horrible hand. It’s okay to cry it out. When faced with the options of laughing or crying, I try my best to choose laughter, but sometimes it’s not possible. And of course, you need more options than that too. Yesterday, I turned to Mitchell and said, “I feel like singing. What do you think about karaoke?” He said, “Are you sure you’re up for it?” (Mitchell is, understandably, encouraging me to rest as much as possible, and discourages too much activity.)

But, question: How do you decline a request for karaoke nine days after brain surgery?

Me: “I have a song in my heart.” Answer: You don’t. Karaoke it is.

Proof: At karaoke (like boss!)

Proof: At karaoke (like a boss!)

A selected playlist:

1) I will survive. (Gloria Gaynor. Sung by yours truly)

2)Wanted Dead or Alive (bon Jovi. Sung by Naomi and Mitchell)

Last song of the night: My Way (Frank sinatra, sung by the whole karaoke crew. I love my family!)

Sometimes a good sing is as cathartic as a good cry.

3) Surround yourself with good, positive people. This is a general rule for life, not just tough times. I am blessed to know so many amazing, strong people. Thank you, guys!

Friends, please treat yourself to something nice today. I plan to do the same, and it’ll be like we’re sharing a moment of decadence together, raising a glass to life!

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On Gratitude

Nate and Mitchell having smoothies. He brought me one too.

Nate and Mitchell having smoothies. He brought me one too.

Things are going okay. It’s been a week since the surgery and the doctors are pleased with the results. They were able to remove most of the tumor. They will get the rest through radaiation therapy once I heal (in a few weeeks). I am able to talk and eat and see. I am really grateful for these simple but important things. Counting my blessings.

Thank you all for sending positive thoughts, beautiful flowers, delicious foods and kind-hearted gifts.  You lift my spirits.

Mitchell has been amazing (no surprise!), shuttling back and forth between home and the hospital. He brings me lots of photos of Nate. I haven’t been able to see Nate since the surgery. Although I am able to walk a little with a walker, the doctors would like for me to be a little stronger and more independent before heading home. So, I am working with a physiotherapist to build strength. The bandage is off now and I’m told that the scar doesn’t look too bad, and will hopefully be covered with hair as it grows back. The sutures are visible now so it looks a little intense (an understatement). It’s like built-in bling.

Speech has come back pretty easily so far. Luckily, I’m not floundering too much to find words. My mom has beeen visiting too so we go back and forth betweeen English and Japanese. I am lucky to know love in more than one language. Once in a while I am able to crack a joke and I’m sure my face must look so surprised by the fact that I can formulate a joke that the punchline is diminished by my own shock. (JB, that one is for you!)

With Thanksgiving coming up and some time on my hands, I’ve been thinking a lot about gratitude. Thank goodness for family and friends, a medical system that works, and for Mitchell and Nate. As much as I’ve been thinking about the big questions (life, love, marriage, motherhood, work) I’ve also been preoccupied with all the very visceral aspects of healing (bones, blood, flesh, muscle etc.) In addition to my poor head, my right arm looks a little like it’s been mauled by a bear. I have tiny veins so it’s hard to get an IV or drip going. It always takes multiple tries and results in lots of bruising and blood. But I’m happy to report that I no longer neeed an IV. (My body is able to regulate its own water and food intake. Boom!)

I did a cognitive test yesterday and I passed with flying colors.

Me: “so, we’ve established that I’m a genius, right?”

Doctor: “Um, you’re doing fine.” (I’m pretty sure I was just insulted.)

Otherwise, I’m a little bored. I spend a fair amount of time  thinking about what delicious food I might get to eat next.(My appetite is unstoppable. I’m no quitter!) FYI: We are fully and almost painfully stocked, so this is not a call for people to suddenly send baskets of sweets or treats, please.

How does this cuteness even exist? (Life is worth living!)

How does this cuteness even exist? (Life is worth living!)

Seriously, thank you for all your kind words and actions. Each one is appreciated!

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Time for a Group Hug

Hello everyone,

I have some bad news to share. In my last post, I wrote about feeling vey fatigued. I had also been struggling with some headaches. To be safe, I had an MRI on Sunday and unfortunately, the results were not what we had hoped for. The scan showed that a mass was growing on the right side of my brain. I was told to go directly to the hospital and that I would likely need to have brain surgery. It looks like the cancer has returned.  I know this sounds like catastrophic, bad news. And, yes, it is horrible, but there are some good things – the tumour appears to be contained to one spot (on my right side), and it isn’t affecting my speech or vision and the operation is unlikely to disrupt these things in any long-term way, which is great. The fact that it is one, localized tumor, as opposed to many small ones, also makes the chances of a successful surgery much better. The neurosurgeons here are excellent and do this procedure often. The fact that it is operable is very good. And the fact that it is being treated quickly is also very good. The doctors have told us that many people recover well from this procedure and go on to live long, healthy lives. This is our hope.

To manage expectations, I want to say that the surgeon expects that they will be able to remove a large majority of the tumor but because of its location, they may need to leave some (so as not to cause damage). The rest will be treated by radiation, which is very effective and could shrink it to nonexistence. (It is so effective that they call if radio-surgery.)

I am at the hospital now and will likely be having surgery today. We don’t know the exact time yet, but they are saying around mid-day, and it will likely last about 3 – 4 hours, but could be longer. Everything is happening very quickly. It seems I was premature in titling my last post, “after cancer,” as it appears that I was only “between cancers.”

A while ago, someone asked me what advice I would give to someone newly diagnosed with breast cancer, and I had a hard time answering. I thought about it for a while and decided that I would say, “It is going to be hard, but you will learn that you are stronger and more loved than you could ever know.” So, I am taking my own advice to heart. And friends, let me say this, “I feel strong, and loved, and I am ready to fight!”

And, I know I’ve posted this photo of Nate before, but it seems pretty perfect for the moment:

You know it!

You know it!

Friends, we are staying positive, so please stay positive with us. I love you.

We will try to update people when we can.

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After Cancer

Nate sharing an apple with bunny

Nate sharing an apple with bunny

Ever wonder what happens after cancer treatment ends? Nope? Me neither! But, I’m finding out, so you can too.

On a good day, hanging out with the lovely MM.

On a good day, hanging out with the lovely MM.

For a little while, I was feeling great. In my last post, I wrote about how great it was to be able to do lots of everyday tasks (the dishes, grocery shopping, laundry, bathtime with Nate etc), and how wonderful it felt. Unfortunately, those things have become hard again. I am so very tired. And I am very impatient about this fatigue. I am SO READY to feel better, I don’t know what to do with myself. My doctor assures me that the fatigue is normal, and not to be too concerned by it. This is how that conversation went:

Doctor: So, you are feeling tired?

Me: Yes, SO SO tired. Exhausted!

Doctor: And you just defended your dissertation?

Me: yes.

D: And you just started a new job?

M: yes

D: And you just walked 32km for charity? And raised over $32,000!

M: yes

D: and you have a toddler at home?

M: yes

D: And you finished treatment just two months ago…So, you are tired….

M: yes. I see your point, doctor.

Basically, she told me to try to rest as much as I could, and to try to be patient. She said, “you have just finished the fight of your life, for your life. Let yourself be tired.”

Then, she also said this: And thank you, for walking in the Walk to End Women’s Cancers, and raising all that money.

You know what’s awesome? Being thanked by the doctor that saved your life! So, of course, I responded: No, thank you! And, friends and family, THANK YOU, for your words of support, for walking with me, and your generous donations! You made this amazing moment possible.

It rained all day, but we did it!

It rained all day, but we did it! Yay team. I love you forever.

In general, things are okay. I am just SO READY to feel better that I am a bit frustrated. I keep thinking back to how life was before I got sick, and I really miss those days. I’m trying to figure out whether I should expect that I’ll ever feel like that again or just work on accepting that things will never be the same, and that that’s okay too.

Also, these two cakes happened, so how bad can things be?

Nough said.

Nough said.

On a cake = it's official!

On a cake = it’s official!

 

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Milestones big and small

"In pursuit of magic," snapped on a walk in NYC

“In pursuit of magic,” snapped on a walk in NYC

I’ve been meaning to update the blog for a little while, but things have been busy. I started to write a post a few weeks ago and it went like this:

I am feeling awesome. That is the brief update in one sentence.

Here is the longer version: My skin is much better, my energy is almost normal, and I am able to complete everyday tasks like it is nobody’s business. It is strange to feel so great about the littlest things. I did the dishes! I can go grocery shopping! I can pick up Nate and give him a bath!  Some days, I can do all these things, one right after another. Amazing, yes? I feel like all these little tasks have been so difficult over the last many months that the return of the ability to do these things is such a huge gift.

I hope you are smiling as you read this. Because I am smiling as I write this. So, we are sharing a smile, you and I.

But then last week I had a bit of a crash. My energy dipped really low and I knew something seemed wrong. I dropped Nate off at daycare and was so exhausted that I had to sit down. With no bench in sight, I sat down on the ground and called my nurse at Princess Margaret. She suggested I come in and get blood work done, just to be safe. I was disappointed. After only a couple weeks of feeling so great, it felt especially cruel to suddenly have to go back to the hospital.

I sat in the chair in the blood lab, the same lab where I had to get my pre-chemo tests done, and the memory of the last many months flooded over me. I remember closing my eyes tightly as the nurse drew blood. I hoped and wished that all was well and I was simply experiencing a momentary, although extreme, dip in energy.

A few hours later, the blood tests showed that everything seemed okay. The doctor suggested that I might simply have a run of the mill virus. I suppose that it’ll take a little while for me to get used to reading the cues and signals from my body, and get used to the idea that not every glitch or stumble in health will be one that’s life-threatening. I think that’s one of the hard things after a cancer diagnosis – trusting your body again.

The next day, I left for New York. Throughout this whole thing, I’ve continued to work towards completing my dissertation and PhD. I defended my dissertation on Thursday and am happy to report that it went well. New York was great. Mitchell joined me for a couple days and we ate and napped and walked around the city. I was still a little low-energy, but made the best of it.

And now we’re back. I’m trying to adjust to a new life – no more treatment, and no more dissertation! Two really big milestones. I’m starting a new job in just a couple weeks and am preparing for a new beginning.

My energy is still low, but I’m trying not to be too impatient. My body’s been through a lot these past few months, and I know it’ll take time to re-adjust.

And although there will be some tired days in my future, the long update is still pretty similar to the short update: I am feeling awesome.

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Hiding from the Sun…

…but not from life!

Nate and I, creating some shade.

Nate and I, creating some shade.

I have been happily unplugged from the Internet for the last couple of weeks. Treatment ended on July 18th and we promptly left for a little rest and relaxation. My skin is on the mend, thank goodness, but I still have to stay out of the sun for a bit longer. I will post a proper update soon, but in the meantime, here are a few pics.

At a celebratory dinner.

At a celebratory dinner.

Nate and Mitchell catching some rays.

Nate and Mitchell catching some rays.

Big fruit. Big fun.

Big fruit. Big fun.

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Fifty Shades of Red

Me and my umbrella.

Me and my umbrella.

So, friends, I knew radiation seemed to be going along too smoothly. What seemed like a mild sunburn before has progressed to an itchy, uncomfortable, hot stretch of skin. It’s yuck. Plus, it is boiling outside, and I still have to keep covered up, which makes things more uncomfortable. I have to do saline soaks two times a day and slather on a goopy cream given to me by the doctors to protect the skin. Today I ventured out with an umbrella to make sure the sun didn’t touch the sensitive skin around my neck and chest.

The skin is all sorts of red: parts are a deep shade of magenta, others are a darker, leathery brown, and then others are a faint pink. The area around the scar looks a little intense. And, as usual, I am tired.

After my session today, I have three left. Thank goodness. I AM VERY READY TO BE DONE. (YES, I AM YELLING.)

In less exciting news, I am wearing red lipstick to match my skin.

Yes, friends, two shameless selfies in this blog post.

Yes, friends, two shameless selfies in this blog post.

Because it’s hard for me to be outside right now, my training regiment for the walk to end women’s cancers has shrunk considerably. My doctors have warned me that my skin may get worse for a few weeks before it gets better. So, it looks like August is going to be my month for training. August,  I am so ready for you.

Bonus photos:

Nate looking for bunny.

Nate looking for bunny.

Nate finding bunny.

Nate finding bunny.

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What radiation feels like

I have had 15 radiation treatments so far, 10 more to go.

Compared to chemo, radiation feels like nothing. Chemo involved needles and IVs and a whole lot of drugs injected into my bloodstream. Chemo was unpredictable and frightening. Sessions started late, and took hours.

Radiation is predictable.  The sessions are almost always on time, quick and orderly. If chemo was like hell, then radiation is like purgatory. It feels a lot like nothing, like I am simply waiting for something to happen.

Here is the basic rundown of how a session goes:

Change into a hospital gown. Lie down on a steel platform. Radiation technicians position my left arm high above my head, and discuss alignment and breathing. “She is a belly-breather,” they often say. Or, “she tends to inhale slowly.” They bring out a ruler and measure. “2cm from scar.” My scars are like a roadmap, as are the four little tattoos I now have to mark the radiation zone.  The lights go off for a moment but I can see my reflection in the metal and glass machine above me. The image of a ruler is projected onto my chest, and the thin lines of green lasers cut across my body. They put the snorkel-type device into my mouth and put on the nose plug (so that they are able to control my breathing.) The technicians leave the room. The machine whirs and moves around me. The voice of the technicians come on over the loud speaker: “First breath in.” “Now second deep inhale in.” The snorkel kicks in and I can’t exhale for about 30 seconds. I can hear a slight ringing sound. There is no pain. The voice comes on again: “Breathe normally please.” The technician comes back in.  More measuring, more lasers. (They are making sure I’m aligned properly for the next portion.) Then they leave again. More holding my breath. The machine whirs and moves around me.

The whole thing takes about 15 minutes. It’s short. I feel a bit tired afterwards. My skin is red now, like a sunburn.

The worst part is that it is everyday. Going to and from the hospital is a constant reminder of illness. Because I’m training for the walk(!), I try to walk to and from the hospital (about 30-40 minutes each way).  I have to keep the radiated part of my body out of the sun. So even on hot days I often have to wear a scarf or jacket and hop from shade to shade, avoiding the sun and lingering in the shadows. And I am tired. But otherwise, it is okay.

On most days, I fee like this:

Happy!

Happy!

Because I get to hang out with this:

Love!

Love!

And I believe this:

You know it!

You know it!

Only 1o more sessions to go. The countdown continues.

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Walking the walk

Taken this weekend at Brickworks.

Taken this weekend at Brickworks.

On all my visits to Princess Margaret hospital, and over the last several months there have been many, I’ve noticed this big, huge banner  over the entrance. It says “I believe we will conquer cancer in our lifetime.” Every time I see that sign, I feel a surge of hope and think, Yes, please let that be true.

“I believe we will conquer cancer in our lifetime.” On September 7th, we are planning to walk 32km to help Princess Margaret Cancer Centre’s raise money to fund research to help make this come true. Over the course of the last several months, all of you have been so generous with your offers to help. You sent food, drink, cards, flowers and well-wishes and it has all been amazing. Now, I’m asking if you can support us on this walk. There are several different ways you can help:

1) Walk with us! We’d love to have as many people as possible walking with us that day. It raises awareness and it raises money.

2) Donate – Donations big or small are welcome! A tax receipt is issued for donations over $20.

3) Babysit – We’ll need some friends/family to watch Nate on days we’d like to train and on the actual walk day.

4) Share this page, to raise awareness and encourage donations.

Thank you so much for any help/support you can give. Just a few months ago, I could barely walk 30 minutes without my feet breaking out in a chemo-induced rash. Now, I’m training to do a 32 km walk. It makes me so happy to be coming out of the toughest fight of my life. I hope you’ll join us in raising money so other women, sisters, mothers, daughters, wives, and friends will not have to go through what I did.

Princess Margaret is one of the top cancer centers in North America. Just a couple weeks ago, they made a breakthrough announcement about a potentially revolutionary new drug they are developing. The drug would more successfully target cancer cells and could potentially be used to treat breast, ovarian, lung, pancreas and colon cancers. Much of the research has been funded by money raised by the walk to end women’s cancers.

“I truly believe in this important discovery and its therapeutic potential for cancer patients,” stated Dr. Slamon, best known for his discovery and development of the cancer drug Herceptin. “I am also astounded by the philanthropic generosity of Princess Margaret donors who believe in this project just as much as our teams working in the labs here in Toronto at The Princess Margaret and at UCLA. This milestone could never have been achieved without their support and belief in our collaborative team. I have had the pleasure of attending several events for The Shoppers Drug Mart Weekend To End Women’s Cancers. While addressing the crowds, I have witnessed the passion of the walker community.”

I believe we will conquer cancer in our lifetime. 

Please contribute if you can. Click here. 

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This Blog is a Love Letter

Happy Father's Day!

Happy Father’s Day!

In the past, I’ve worried about the publicness of writing about illness. This concern with publicness is a common theme in a lot of blogs written by moms of young children. Will my child grow up and be embarrassed by such a public account of their early lives? I certainly hope not. Some people think of a blog as a very public diary, a way to share their daily experiences with their family, friends and perhaps a wider circle, as a way to make people follow along on their adventures, to commiserate when they are having a hard time. It’s for getting support and making new connections.

This blog is about those things too, but I don’t really see this blog as a diary; I see it as a love letter.

It’s a love letter for my family and friends and for life in general. And really it is for Mitchell, who makes me happy even in the saddest, scariest times. And it is for Nate, because everything is.

I hope everyone had a Happy Father’s Day! And I’m sending a special batch of love to my dad, my dad-in-law and Mitchell.

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