In Which I Excel at Breathing, but Fail at Raising My Arm

Yesterday, I posted that I would be getting a planning CT scan. Unfortunately, I wasn’t able to have it done. The appointment started out very well. First, I met with a technician who showed me the breathing apparatus I would be using throughout radiation. It looks a bit like a snorkel. When the device is activated, it forces me to hold my breath. Because I have left-sided breast cancer, holding my breath helps to keep my heart out of the way of the radiating rays.

All was going well. The technician asked me to hold my breath for as long as possible. I managed for forty-three seconds. I thought that sounded pretty good, so I asked him, “Would you say that 43 seconds is above average?” He thought about it for a moment and answered, “Yes, I would say so.” Booyah.  I am awesome at breathing.

Then, things went downhill. I moved on to the CT scanning room where I lay down on the platform and four technicians proceeded to try to get my left arm into place. They were trying to position the arm above my head. But my arm was refusing to cooperate. It’s still stiff from the surgery. So, the technicians told me that we’d have to wait another week before the planning scan. I was disappointed (aka I cried a little) because I really don’t want to delay treatment. But I also understand that it’s really important that I am able to stay still and in the same position throughout the five weeks of treatment.

So, after the high of finding out that I am an above average breath-holder, I had the come down of finding out that I am unable to raise my arm properly. It was a roller-coaster of a day. I’m scheduled for a do-over of the planning scan next Tuesday. And I am now equipped with some new exercises to get my arm in arm-raising shape. Wish my arm luck, friends.

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All the Things

Me, doing a decent job of looking like I actually chose this hairstyle.

Me, doing my best to look like I actually chose this hairstyle.

There are lots of things going on, so here is the point-form version:

First, the things you probably want to know:

– We got the pathology report back. And it is good. Real good.  A small tumor, about 4mm was found in the left breast tissue. An even smaller tumor (less than 2mm) was removed from the lymph nodes on the left side. Given that the tumor in the left breast seemed to be about 15cm when I started chemo, that is an amazing result. But, I have to admit that I was a bit disappointed (aka I cried a little) that even a small amount of cancer was found in the lymph node. The CT scans had suggested that they looked clear, so when I heard that news, it made me feel a bit disappointed and a little nervous about the tumors that were in the neck area (because they also appeared to look “clean” in the CT.)  But I suppose that’s why we’re doing radiation – it’ll clean up any tiny bits left lurking around. No cancer was found in the right breast tissue (no surprise there, but happy to have that confirmed.) Bottom line, the cancer in the left breast and lymph node under the arm have successfully been removed! Amazing.

– Next steps: radiation therapy. I have a CT scan today that will help to plan out the exact area that will receive radiation. Because the cancer is on the left side, I will have to use a special breathing device during radiation to minimize exposure to my heart. At this point it looks like radiation will be 5 days a week for about 5 weeks.

– The pain is much, much better. I was even able to pick Nate up this week! I am still sore, but am mostly off the pain medications. And my energy levels are good.

At my favorite pizza place. No big deal.

At my favorite pizza place. No big deal.

Second, the things you might want to know:

– My hair is growing back. Yes! But, it is growing back very gray. So, thank you cancer for making me feel old. This weekend, with the help of my talented sister, I gently dyed the tiny bits of hair on my head. I’ve ventured out without the wig now, and feel okay about it.  With the hot flashes (a lingering side effect of the chemo), I get too uncomfortable with the wig (think Samantha in Sex and the City giving that speech – “I said inspirational, not perspirational”), so as the weather warms up, I’ll be wearing the wig less and less.

– I am getting used to my new body. But, let me tell you, it is weird. Every day is an exercise in layering my clothes to camouflage the strange absence of breasts. I am supposed to wait about 6 weeks before going for a proper post-mastectomy prosthetic/bra fitting, so until then I am experimenting with all sorts of scarves, wraps and ruffles. Reconstructive surgery will have to wait at least 6 – 8 months after radiation (and I haven’t even decided definitively about this yet).

Third, the things you probably don’t care much about, but that I will share with you anyway.

– I really like Mindy Kaling. I read her book (thanks, Kari!), and watch her show, and she makes me laugh a lot. I’m pretty sure we would be friends if we met before she got famous.

– I went for gelato with my sister and it turns out that I don’t love gelato. I know, I am an enigma. Sorbet, though, I like. Go figure.

The sorbet almost matches my coat.

The sorbet almost matches my coat.

Bonus photos:

Nate and his auntie.

Nate and his auntie.

Nate and his bunny.

Nate and his bunny.

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Me and Angelina

I'm famous!

I’m famous!

On Tuesday morning, I heard about Angelina Jolie’s preventive double mastectomy. I started to write a blog post about it, but it turned into more of an article, an article that ended up being published on The Huffington Post!  I’ve pasted it below, but you can also read it here. I’m happy to be contributing to the dialogue about gene mutations, breast cancer and preventive measures. I’ve also been talking to the Huffington Post about contributing blog posts from everybodyhearts.com to their site, so I’ll be working on that too!

Angelina Jolie has just gone public with the news that she had a preventative double mastectomy. As a BRCA1 gene mutation carrier, she had an 87% higher risk of breast cancer and a 50% higher risk of ovarian cancer.

In January of this year, I also found out that I have the BRCA1 gene mutation. For me, the test came late, after I had already been diagnosed with an aggressive form of breast cancer, one that had already spread to my lymph nodes. Diagnosed in December 2012, at the age of 35, and just 5 days before my son’s first birthday, the news was a total shock. I knew that the gene ran in my family, but I had yet to be tested. Unlike Angelina, who had watched her mother battle cancer for over a decade and die at the age of 56, I had not known anyone in my immediate family who had been diagnosed with breast or ovarian cancer.

Two years ago, before my life was turned upside down by the diagnosis, I remember speaking to my doctor about the gene. She asked if I wanted to be tested. I wondered whether knowing if I was a gene carrier would change anything in my life. Would I live my life differently if I knew I had a 70% higher chance of getting breast cancer? Would I change my lifestyle, rethink the decision to have a family, or embark on a new career if I knew I was 60% more likely to get ovarian cancer? These were big questions, ones that I figured I had time to think about. I was only in my mid-thirties after all, and I lived a healthy and active lifestyle.

She mentioned that some women who find out that they have the gene mutation choose to have preventive mastectomies and/or preventive hysterectomies. At the time, I thought this sounded like a very drastic decision to make. And frankly, I couldn’t imagine choosing it for myself. Now though, after being diagnosed with breast cancer, and undergoing treatment, I understand that choice much better. I completed 8 rounds of chemotherapy this March and two weeks ago, I underwent a double mastectomy. In a few more weeks, I will undergo 5 weeks of radiation. A preventative mastectomy would have saved me the grueling months of chemo and the radiation, and would have allowed for reconstructive surgery right away. Instead, because of the radiation therapy, I will have to wait many months before I can have reconstruction. The decision that had sounded so drastic a few years ago, now made sense. Drastic times call for drastic measures.

Towards the end of my chemotherapy, I attended a seminar on reconstructive surgery. I remember that I was feeling unwell at the time. I was exhausted. My hair had already fallen out and my skin was pale and grey. I recall putting my head down on the table as we waited for the session to start. A young woman was sitting next to me. I remember thinking that she looked so healthy. I guessed that we were about the same age. There were about 12 women attending the seminar. Through the course of the day, I would learn that 11 of us were either undergoing treatment for breast cancer, or had recently completed treatment. One woman, though, the young woman sitting next to me, was there because she had tested positive for the gene mutation and was considering a preventive mastectomy. She had watched her own mother battle breast cancer and now that she had become a mother herself, had decided to seek out options. Listening to her speak, I knew that before my diagnosis, I would not have been able to understand what she was doing. The decision seemed too big, too all-encompassing. Now, though, I understood that cancer could be all-encompassing in a way that I could never have grasped before. After the seminar, I asked her whether she had made any decisions. “Not yet,” she said, “but I’m leaning towards having the surgery.” I was feeling so horrible from the chemo side effects that day and at that moment, I wanted to say, “Yes, have the surgery. Do whatever you can to avoid this.” But I’m sure she was already getting a lot of unsolicited advice, so instead I just smiled and we wished each other luck.

As Angelina writes in today’s New York Times, “Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness.” She goes on to explain that the genetic testing is one way in which women can feel empowered, so that they can be proactive in preventing a life-threatening illness. It takes courage to do what Angelina did. That young woman at the seminar, and the many others like her that are faced with this decision, are also courageous. I have already received lots of emails about Angelina’s article. People are talking about gene mutations, and breast cancer, and prevention in a way that I hope will be productive. I think it took great strength for her to go public with her story, and I am grateful for her choice to do so.

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A Few Photos from Mother’s Day

It’s been a busy few days. I’m happy to report that the pain is slowly subsiding and my mobility has greatly increased. I still can’t pick Nate up, but I’m hoping I’ll be able to soon. In the meantime, he’s getting lots of attention from Mitchell, visiting family members and friends.

I had a great Mother’s Day and was happy to spend it with Nate, Mitchell and my mom who was visiting from Vancouver. Here are a  few photos from a lovely day:

Nate with his face in a bowl of cereal - His way of wishing me a mother's day.

Nate with his face in a bowl of cereal – His way of wishing me a happy mother’s day.

Tea with Joan. A quiet moment on Mother's Day.

Tea with Joan. A quiet moment on Mother’s Day.

An old photo of my mother, transferred to canvas.

An old photo of my mother, transferred to canvas.

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The Art of Slowing Down

One of my favourite photos from last year.

One of my favourite photos from last year.

In the moments after I wake up,  one of my first thoughts is, “Am I in pain?” Some mornings it’s a bit hard to tell. I slowly turn to one side, testing to see whether I feel a pinch, or any tingling in my arms. Sometimes it is a sharp sting, sometimes it is the slow tightening of my chest, like something very heavy has suddenly been placed there. The pain often makes it difficult for me to sit up, so I take everything very slowly. I raise my arm, I twist at the hip, I cautiously inch my way up to a sitting position. It has only been one week since the surgery, and my body is still in recovery mode.

On some mornings, I can hear Nate playing downstairs with his dad and I feel my heart swell with happiness. “How lucky I am to be a part of this family,” I think. On other mornings, on those when the pain is bad, I think how sad it is that I am in this bed and missing out on the cuteness that is surely happening downstairs.

But then I shift my mind back to figuring out how I’m going to get out of bed. Everything feels very slow in the morning. Each movement is calculated to be gentle, cautious. I try turning, bending, reaching in several ways until I reach the side of the bed and slowly lift myself up. When I get out of bed, after taking my pain medication, I walk down the stairs. Each step, slowly slowly. I can hear Nate’s voice chatting away. He is busy making up words and peppering in a few of his favorites. He will point at Mitchell’s nose and say, “nose!” Then at his toes and say, “Toes!” At his water bottle and exclaim, “wawa!” Every word is its own exclamation, a lovely surprise at the miracle that such things as noses and toes and water simply exist.

I peek around the corner of the staircase and wait for Nate to see me. That first smile in the morning is the best. He sees me standing on the stairs and then he says, “mama!” And smiles a smile that says, “I knew you were there, all along.” I take the last few steps on the stairs with a concentration on savoring the slowness, because I know in mere moments the hurricane that only a 17 month old can create will soon overcome me. I wish I could be part of the hurricane with Nate and tear through the house, the world, my heart with the assuredness and strength that only those who don’t know the dangers of life can do. Instead, I practice the art of slowing down. I walk over to the couch and sit down, and again build a little fortress of pillows around me.

The flowers on my walk around the block since leaving the hospital.

The flowers on my first walk around the block since leaving the hospital.

Nate wants to crawl up my legs and demands, “Up,” “Uppy,” Up!” I can’t pick him up yet, so he wiggles his way up my legs and manages to get onto my lap and snuggles back into the pillow protecting my chest. As he sits there, I try to relax. I try to straighten my back, to not hunch my shoulders to protect my healing body, and to let out a few deep breaths and enjoy the fleeting stillness of this moment. But just as quickly as he scrambled onto my lap, he wiggles his way down again and is off running into the kitchen. It turns out that “up!” doesn’t actually mean, “pick me up,” rather, it’s more akin to “hold me, please.” Sitting on my lap while being separated by a protective pillow, is not the same as a real cuddle, so he moves on, taking off into the kitchen, yelling “milky!” or more often than not, simply yelling.

My chest is sore, but mostly it is numb. The most significant area of pain is actually under my arms, which strikes me as strange after a bilateral mastectomy. My mobility is also restricted. I can raise my arms to almost parallel to the floor now, but not much higher. Watching Nate run and play and laugh reminds me that the surgery may have (temporarily) broken my body, but it certainly did not touch my heart, nor my capacity to feel love (or heartache).

Healing will take time. I don’t mind the slowing down. I think it’s a good thing. It helps me to focus on each movement, each moment. Last Mother’s Day was my first. Nate was only 5 months old. I was still in the exhausted but elated stage of motherhood. Just 7 months later, at the age of 35, and just 5 days before Nate’s first birthday, came the diagnosis. I’m still sorting too much out to say that I have a new perspective this Mother’s Day, but perhaps I have more perspective. A cancer diagnosis has the ability to make life feel too fast, too short. So right now, my mother’s day gift to myself is to allow myself the time and energy needed to hone the art of slowing down.

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Home

Home is where the flowers are.

Home is where the flowers are. (Thank you everyone for sending such beautiful bouquets!)

Recovery is hard. Before the surgery, I had heard that it actually wasn’t too bad, and that chemo was way worse. And maybe that’s right, but that only speaks to how seriously horrible chemo is, because recovery from a bilateral mastectomy is some serious business.

After the surgery on Wednesday, I was told that it went well, or at least as well as planned. This was how the basic conversation went:

Doctor: How are you feeling?

Me: Okay. How are you feeling?

Doctor: Fine. Thank you.

Me: How did it go? Is the cancer gone? Did you get it all?

D: It went well. We won’t know about the cancer until we get the pathology report.

M: Oh. But do you think it’s gone?

D: I can’t say.

M: But do you believe it’s gone?

D: We won’t know for a couple weeks.

M: Well, I believe it’s gone.

Then I passed out from the morphine.

That day was tough. I was supposed to go home the next day but the pain was still pretty horrible. I could barely walk, so I asked to stay an extra night. The next day was a bit better. Still tough, but better.

When I got home, Nate ran around in circles saying “mama,” “mommy,” “mama.” It was adorable. I piled a little pillow fort around me just in case he accidentally karate chopped me. The home nurse came by that day and removed one drain and took off the bandages. That, again, was tough. I’m still wearing the post-op camisole so I haven’t really had to face the scars. I’m not ready for that yet. (I had four drains total, two on each side. Three have now been removed.)

Hide and seek.

Hide and seek.

I am still in a fair amount of pain. But at least I can stand up on my own now. And I know that each day will get a little bit better.

I’ve been shying away from posting a picture of me without hair, but now that I don’t have boobs, the whole no-hair thing doesn’t seem like that big of a deal. There’s some perspective for you!

Me, post-chemo.

Me, post-chemo, pre-surgery.

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Before and After Moments

Family Photos

Family Photos (Thanks, sis, for the photos of photos!)

Before the diagnosis, we didn’t have that many family photos up around the house. Now, though, we have a bunch. I wanted to see our smiling faces looking back at me from every room in the house, so we selected our favorites and had them surround us. For the most part, I love looking at them. We look so happy, so healthy in them. But once in a while, they act as a reminder of the me I was before the diagnosis and I feel a bit sad. It’s not nostalgia, because that is too wistful a word for what I feel. It’s not quite a feeling of mourning either, although on some days it feels that way. It’s more like something bittersweet, the sting of having experienced something so sweet and lovely and recognizing that it is gone for the moment. While at the same time, hoping that it makes a return sometime soon.

These photos bring me happiness but they also act as a sort of “before” photo, an image of a person about to be transformed. Life right now feels very much like a series of before and after moments. As I think back on the last few months, I find myself categorizing all the many stages we’ve gone through: before the diagnosis, after the diagnosis; before chemo and now after chemo, and of course, tomorrow (Wednesday) there will be another milestone in the treatment process. After Wednesday will be the after surgery portion of my life.

I knew the surgery was coming but because I had been focusing so much on the physical and emotional challenges of chemo, I hadn’t processed yet what the surgery really meant. Now though, as it looms so close, I can’t get it out of my head. I alternate between wanting to run away from it, and from wanting to just get it over with. I went to a pre-operative information session last week and the nurse went over some of the details. Here are a few: The surgery will take place at 8am on Wednesday and will likely take about 3 – 4 hours. I will be under general anesthetic and will stay at the hospital for one night. On the left side, they will be removing my lymph nodes, but the lymph nodes on the other side will stay intact. I will be unable to lift my arms over my head and will not have full range of motion for at least a few weeks. I have been given a whole slew of exercises to do to help aid in the healing process.

The nurse also told me about the stitches, and the drains, and that although I’ll be in the hospital for only one day, a nurse will come to check up on me at home daily until the drains are removed (usually within 10 days). She also warned me that I would be unable to pick up Nate for some time. During the session, I had felt relatively strong, but at that moment I couldn’t help but let a few tears fall. Because that’s what makes me want to cry – the thought of him reaching up for me, and not being able to scoop him up in my arms. Hopefully, it won’t be long till I get full mobility back, and am healed enough to pick him up and cart him around on my hip.

Mitchell, as always, is amazing. Instead of referring to Wednesday as surgery day (as I have been), he’s calling it Cure Day. I love that. I hope that in the days and weeks and months to come, that’s how I remember it. I hope that one day I will be able to look at the scars on my body as the traces of a life-giving surgery, a surgery that I hope will cure me of this disease.

But, unfortunately, before I have scars, I will have wounds, and I have to brace myself for that. In the meantime, I’ll look at the family photos we have around the house and think how lucky we have been.

We're on a boat.

We’re on a boat.

Frames and tulips.

Frames and tulips.

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