My Standing Heart

Thank you for all the kind words of encouragement from my last post. I am feeling a bit better. Many of you shared thoughts on harnessing fear and I’m starting to see how fear can be productive. It is the body’s way of readying for a fight, preparing itself for a tough battle. Fear can make you stronger. And I am  starting to feel that I am stronger than fear.

I’ve also been reflecting more on the radiation procedure. As I have written about before, the actual radiation treatment is not too bad. But in the case of the upcoming procedure, it’s the preparatory procedures (pins in my skull and attaching a frame) that have me feeling freaked out. The radiation process itself is less scary. I was thinking about the last time I went through radiation, and the special breathing I had to do throughout the process.

Because I had left sided breast cancer, I had to hold my breath during radiation. The theory is that if you hold your breath, your lungs fill up with air, and they push your heart out of the way of the beams of radiation. I only had to hold my breath for about 30 seconds at a time, several times for each session.  Thirty seconds is not a long time, but it’s surprising the number of thoughts that run through your mind as you lay there, on the metal table and hear the soft ringing of the sound of radiation machines.

And as I took a deep breath in, and held it, this is what I thought: Right now, my heart is standing.  As my lungs pushed my heart out of the way and  kept it from danger, became its big brother, its protector, my heart stood. It stood for my family, my husband, and my little boy.

As I prepare for this next step in treatment, it is standing again, because it is ready for a fight. Now, when I think about fear, I reframe it to think, fear means my heart is standing, readying for a fight. But my heart is also standing, because it is equally ready for an embrace.  I am facing the world, and everything it throws at me, ready for the fight, and ready for the embrace.

And yesterday, we got some good news, some much needed hugs after many, many punches. I had several scans last week to make sure the cancer hadn’t spread anywhere else. We got the results back and I’m happy to share that they found no new cancer. This means no bone cancer, no lung cancer, no liver cancer etc. (No new cancer dance!) And because of this, I do not have to have chemo.

It’s great to be going into the procedure this morning knowing this good news. We’ve decided on the radio-surgery option, and not the whole brain radiation. We know that, at this point, the only tumor we know of is in one spot and so that’s the immediate threat that needs to be treated.

The whole procedure happens once, and takes about half a day. We’re scheduled for an early morning start today (in just a few hours), so it should be done by about mid-day. Looking forward to when this is done, and to more hugs than punches in the future.

More hugs:

Halloween family.

Halloween family.

The future's so bright...

The future’s so bright…

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A New Four Letter Word

We are starting to learn more about next steps in treatment. We knew that radiation therapy would likely be next, but we weren’t sure what it would entail. We got some details on Friday and had to make some tough decisions.

We were told that there were two main options in my case: 1) whole brain radiation and 2)targeted radio-surgery to the site of the tumor. Whole brain radiation, as the name suggests, involves radiating the whole brain, so that if there are any stray cancer cells outside of the tumor site, it would treat those too. Unfortunately, there are some major side effects including irreversible cognitive difficulties (short term memory loss, difficulty processing information). With option 2, cognitive difficulties are far less common, and apparently not a major concern. But it only treats the site of the tumor so if there are some stray cancer cells, it won’t get those. It was a hard decision to make, and originally, I was leaning towards whole brain radiation because even though I do not want to suffer from irreversible brain damage, I REALLY don’t ever want to have cancer again. (what a choice to have to make!) But after talking to several doctors about my options, it seemed clear that the tumor I had was very aggressive and it made sense to target it specifically again so it did not come back. Plus, having radio-surgery now does not mean that whole brain radiation is ruled out as a future treatment if necessary (if any new growths appeared in an MRI scan).

Friends, I have done my best to stay positive and strong in the face of insane challenges, and I feel that I’m reaching a sort of threshold. I am close to my limit. The radio-surgery involves  a surgeon sticking pins into my skull and attaching a frame of sorts to my head so that I am unable to move at all during the procedure. They do not use general anaesthetic for this procedure, just local, so I will be lucid during the process. That’s it, I’m at my limit. Someone is going to attach pins to my skull while I am awake. I have felt fear this year many times. But I am feeling it in a very intense way about this procedure. I try to keep it at bay, but it has become a real presence in my life, a new four letter word: fear. There is the fear of pain and side effects, but also the fear that even if I am doing my absolute best to fight this disease, it may not be enough. For the last few days, I’ve been easily overcome with emotion, bursting into tears when I think about this past year and the weeks ahead. I am that woman crying into her food at the restaurant, the one crying as she walks down the street. I’m trying to keep it together, but it’s hard. When I feel overcome with emotion, I try to focus on the present and the goodness of the moment: the wind on my face, the taste of delicious food, the warmth of a loving family. I know it is normal to be afraid and to feel sad, and it’s probably good to have a few good cries.

Thank you, friends, for letting this blog be a space where I can be honest about this experience. I believe that fear is normal, and that it can be harnessed. Just writing about it, and getting it out, helps me to feel stronger. With your help, I will turn fear into another four letter word: hope.

Speaking of hope, check out these photos:

Little dinosaur.

Little dinosaur.

Mommy penguin. Baby dinosaur. (my face still looks a little swollen, and my smile looks a bit off, BUT I am dressed as a penguin!)

Mommy penguin. Baby dinosaur. (my face still looks a little swollen, and my smile looks a bit off, BUT I am dressed as a penguin!)

Nate lovin' life.

Nate lovin’ life.

Me, looking more like myself. Thanks to T'ai!

Me, looking more like myself. Thanks to T’ai!

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Sometimes, balloons happen

As you can imagine, the last few weeks have been crazy, and I’ve heard or uttered some of the craziest sentences imaginable. Here are a selected few to give you an idea of what we’ve been dealing with:

On the morning of the surgery, the surgeon said: “There is  a blood vessel wrapped around the tumour, so you have a 20% chance of having a stroke today.” (Seriously?! How do things keep getting worse?!) Another surgeon then told me that, “There has been a lot of swelling in your brain and when we cut into your skull, it will relieve some of that pressure but may also cause your brain to pop right out, causing a serious seizure.” (Stop it! How much bad news can one person handlle on the day of her brain surgery?)

Thankfully, neither of these things happened. The surgeons seem pleased with the results and the recovery continues to go well.

When I was discharged, I asked about the sutures (which look like staples) in my head and when they would be removed, and the doctor said: “Twelve to fourteen days after the surgery you can go to a walk-in-clinic or to your GP and have them removed. In fact, we will give you a little kit and you or Mitchell can even do it yourself. It’s a simple procedure and shouldn’t hurt much.” (I may have just had brain surgery, but I’m not stupid! As if I’m going to attempt to remove a row of staples from my own head!)

Two weeks after the surgery, I find myself saying some crazy sentences too. For example:

(on the phone with my doctor’s office): “I was there two days ago to get the staples removed from my head, and it appears that one was missed. I still have a staple in my head. I would like it removed immediately.” (awkward.)

These! (overshare?)

These! (overshare?)

At the doctor’s office, the doctor said, “Sorry this is going to hurt. Because the staple was left in a little too long, the skin around it has healed more than it should have, so this will be more painful than the ones we moved a couple days ago. (not fair!)

As I’ve mentioned, my appetite has been crazy. On Saturday, I finally uttered the words, “I think I’m full,” and it felt like a momentous occasion.

We also got the pathology report back and learned that this cancer is the same one from earlier this year. So it is a recurrence, not a new cancer. This is the news we expected to hear. I am healing well. Right after the surgery, I had a pretty bad black eye and my face was swollen. It’s much better now.

There have also been some great sentences or phrases too, mostly said by Nate. Here you go:

Nate: “Mommy has an ouchy. Mommy, be careful. No more ouchy.”

Me: “Nate, do you want to sing a song?”

Nate: “Yeah!”

Me: “What song?”

Nate: “Desperado” (I kid you not!)

Then I start singing it, and Nate says, “Daddy sing Desperado. (Diss!)

Over the last year, Mitchell and I have become skilled optimists. I hope this is a skill we are passing on to Nate. Things have been tough for us for a while, and Nate has been amazing about all the changes, big and small, in our home routine. I think he understands that mommy is sick, and that things are different right now. I hope he understands  that even though sometimes things are hard, there are also many pockets of happiness and love too. The other day, I bought him a big bouquet of balloons. I want him to know that even  though some times are tough, and seemingly randomly so, sometimes, balloons happen too, and for no apparent reason.

Cane in one hand, balloons in the other.

Cane in one hand, balloons in the other.

A blue balloon for Nate.

A blue balloon for Nate.

Bonus photos:

Working on an art project with Nate, and feeling punk rock in my studded bandana to cover the sutures.

Working on an art project with Nate, and feeling punk rock in my studded bandana to cover the sutures.

More egg-cracking fun

More egg-cracking fun

Sharing a look with Audrey on a walk around the neighborhood.

Sharing a look with Audrey on a walk around the neighborhood.

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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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