Stuck

It's almost been a month since I have written.  I wanted to write, I thought a lot about writing but once I began radiation I became stuck.  

For those of you who don't know radiation happens every day.  You drive in, get your treatment and go home.  As the weeks pass your skin starts to burn and you become insanely exhausted.  And this is what happened to me.  Getting these treatments became my full time job.  

So as much as I thought about doing things and went to do things, those things didn't happen.  Art didn't happen. Writing didn't happen and even bookselling did not happen.  But what did happen was self care, reading (in the first two weeks) and reaching out to people.  

For a while I was feeling guilty about this, but then I was like, uhm, nope.  I won't let the ridiculous world of strange guilt mess me up.  I felt bad that I wasn't getting chemo.  But I came to the conclusion that this is bad too.  I also realized that comparison between these sorts of things doesn't work.  It was time I let go of all of those thoughts and just take care of myself. 

The past week has been hard, as I am dealing with some very burnt skin and pain but things have begun to come into focus for me. A lot of people talk about cancer being a battle, and generally I steer clear of the language of fighting because there is always a winner and a loser, and it's just not a way I like to look at this disease that affects so many. 

I would rather liken it to being a pirate on a ship in a big storm.  Some of the pirates are terrified and get paralyzed, Some just go right to work and do what needs to be done, and then I imagine that there are the pirates (I imagine them the old wisened pirates) who just go with the flow and realize that the storm will take us where it takes us.  

There is a tradition in cancer centres all over that after you finish a treatment you ring "the bell". On Tuesday October 25th, I will be finished the radiation treatment.  I will ring the bell at the Juravinski Centre.  Some people don't like the bell, because they say that cancer treatment is never really done, and it tempts the fates.  Personally I a big believer of marking change.  Ringing that bell will let the world know that I am done the treatment.  That the storm is over for now, and that I will take some time to get everything in order and then, slowly and surely I will begin to create, begin to go out, and begin to move forward.  I can't wait to begin the process of becoming unstuck.  

The Surgery

The cancer has been removed.  They took out a lump with surrounding tissue that was about the size of a clementine.  I like the idea of removing a small orange from my body.  I am not sure why, but I like that image.  Definitely better than a golf ball, way more organic for sure.  

Yesterday when I went to Juravinski for my care I was totally overwhelmed with love for those nurses and doctors.  From Sheila, the nurse who has been working there for 35 years and will retire on Monday, to the anesthesiologist who had kind eyes and wore the hot pepper surgery cap, to Dr. Susan Reid, who was kind, funny and had a voice like Cybill Shepard, a bit raspy and so calming.  

As I went toward the operating room, I walked by surgeons who wore something that looked like bicycle helmets and was told that they deal with more intense surgeries that involved cutting bones and that the helmets were actually visors to prevent the icky stuff of bodies from getting on their faces.  Well, that just about put me over the edge and I started talking a mile a minute, and I didn't quite realize it but I was FREAKING out!   

We opened the doors to my operating room, and there were 5 or 6 women, who all surrounded me quickly and began the process of getting me prepped.  I told them that I felt like this was some sort of coven of amazing women, and that I loved them.  I was given some ativan for anxiety and the last thing I remember was a mask being put on my face. 

I awoke about 4 hours later and the first thought that came into my mind was that they had made a mistake in the surgery. 

"Uhm, excuse me? Hello? I whispered in my gravelly voice. "Am I cross eyed? I think I am cross eyed?'

"Nope.  Your eyes are just adjusting. It's something that happens after surgery." smirked the short haired nurse. 

"I really think I am cross eyed.  My son would like that.  He's five."

As I started coming to, I asked a lot of questions.  Is the cancer gone? I am alive? Can I drink some water? When can I have chocolate pudding? The bells around me would go off and I would be reminded to take deep breaths.  I drank water and continued to breathe.  

Soon enough I was wheeled from the Recovery Room to the Same Day Surgery where I was reunited with my amazing team of my mom Carmen, and my husband Dave.  We hugged, and I cried a bit, and we all felt relieved. 

I know that this surgery is a mild one for sure, but it really made me think about life.  As the mask was put over my mouth and nose, for one moment, I thought, this could be my last moment.  Who knows what could happen?  And for one brief moment, before I fell asleep, I just felt love.  A very calm and simple love.  

Books and Boobs

The house is quiet.  My son is asleep and my mother and husband have stepped out for an hour.  I am sitting on my couch surrounded by my 2 cats and a dog and I feel calm.  It's a deep calm that has only come upon me in the past 15 minutes as the house settles and everything falls asleep as the sun sets and the darkness comes. 

Tomorrow is my surgery.  I will be having a lumpectomy and a sentinel node biopsy, which in normal talk means that they will remove the tumour and 3 lymph nodes to see if the cancer has spread.  I have been meditating that it hasn't, and hope for the best possible outcome.  

It's been a flurry of activity here the past few days. Friends I've known for ages, and then new ones that I have only recently connected with have been taking care of me, and bringing my little family all sorts of sustenance.  I am so grateful for this community that I am a part of.  I feel full of love, and to feel that the day before surgery, well, that feels like magic.  

A lot of my visitors have been asking how I found my lump.  It's a bit of a mystery to the doctors too, as it isn't detectable on the mammogram.  The response to that question is a bit odd.  The way I found my lump was by reading. 

I read every day.  I sometimes read a few pages.  Sometimes 5 chapters, and sometimes a whole book.  It's part of what makes me focus, an act that connects me to the human spirit, and it inspires me to live honest and true every day of my life.  Reading makes me feel less alone in the world. 

Now, when I read I drink tea. Sometimes I snack and I often touch my boobs.  It's not a sexual thing, because believe me,  after you have a baby and you breastfeed, breasts are not really sexual, they are more like comfort givers. 

The upside of reading daily, is touching your boobs daily and you know what they feel like.  So the moment that a funny little lump appeared, I knew that something was wrong.    Fast forward to today, and the doctors can not believe that I found this myself. If it weren't for the time I spend reading and poking my boobs, I would not have found this lump, and time would have passed and the lump would be much larger and things would have been much different. 

So I feel like I owe the Book Gods.  I will never stop reading.  I will always have a stack of books by my bed side.  I will always tell people to read books, and now, I will also urge them to touch their boobies as they read.  

When i was a kid there was a lot of ads about monthly breast exams.  But somehow they illustrated it in a rather creepy way.  I never liked them and I never really followed the instructions. 

So, to all of the women and men in the world, no matter what age you are, please please touch your boobs on a regular basis.  Read Books. Touch Your Boobs.  It is how i found my cancer so early. 

This time tomorrow I will be recuperating from surgery and the tumour will be out of my body.  To me, this is a thing to celebrate.  I think it will be the perfect time to start reading a new book.  

Information and Care

This morning I had an appointment at Wellwood.  Wellwood is an excellent cancer care centre in Hamilton that takes care of things other than the medical diagnostic bits. They take care of people on the whole, offering yoga, tai chi, meditation, together with support for cancer survivors, their families and caregivers.  

A few days after I was diagnosed, I starting searching for a place where I could get information. You see, I am an information junkie.  For those of you who know me personally, you know that I have worked in bookstores for over 20 years.  My house is full of books, too many books, maybe, but that's okay. Because I love books. To me, they are friends, sources of information, as well as inspirations.  I have books on lots of things.  Books for kids, books for creativity, books on books and books with information.  It's the way that I figure out what i don't know what to do.  I read, and read and read.  I look for places to go, for things to do, I look for resources.  

I was told by a handful of friends, that Wellwood had those resources and more. So off I went. 

The first time I visited I drove up to the new building on Sanatorium Rd. I sat outside and cried in my car.  I just didn't want to have cancer.  I really felt like, it just wasn't fair.  I have a 5 year old, and an amazing husband, and I have a lot of art to create. Cancer should happen to old people, not to people like me.  Of course, I know that cancer hits everyone, regardless of age, gender, religion.  This stupid horrible disease gets everyone. 

When I walked in, I was greeted by a wonderful woman.  She sat me down and talked with me.  Not about the specifics of my diagnosis, but about how I was feeling.  She told me about the center, and more than anything, she made me feel better.  She calmed me and reminded me to breathe.  At the end of our talking, I found myself sitting on the floor in their library surrounded by books.  I was in my happy place.  Books about coping, books about health and books about cancer. Of course. I signed out a few books and left feeling hopeful. 

Today's stash of books on cancer along with a pillow for my post surgery healing!

This morning I went for a reiki appointment.  I was a bit skeptical at first, because I am someone who likes hard, deep massage, not little fluffy touches. I am slightly allergic to hooky dooky new agey music, but I am aware that I need to be open to as many options as possible. When the session started my monkey mind was active and negative.  As she placed her hands on my eyes, my arms and my hands, voices in my head were telling me how this is such a waste of time.  By the end of the session, I was calmed, with visualizations of blues behind my eyes and energy flowing. On my face was a smile. 

Before I left, I went to the library.  I returned some books and took out some new titles. I talked with another one of the workers at the centre. She gave me more information, about programs and groups, and she did so in a way that wasn't scary or overwhelming.  

After I left, I was struck by the amount of care I had felt in this centre.  The kindness of those who worked and volunteered there.  I do still wonder why this cancer found me, hadn't I had enough hardship in the past few years?  But now, I realize that it isn't personal, and that even though it hits us all, that there are resources, and places, and most importantly people who can help.  

Asking for Help

Last Sunday I had the pleasure of selling some of my work at the Hamilton Zineposium and it was amazing.  For the show we had created an ad hoc company called MamaMax which features the work of me as well as my 5 year old son Max who has been working hard on making art for his colouring book zine.  I had decided that I would turn some of the posts from this blog into a Pity Face Zine.  

Now for those who don't know, Zines are hand made magazines written by anyone who wants to create one. They often combine illustrations with words and are photocopied in black and white.   I have dreamed about making a zine for a very long time, and never quite thought that my first one would be about being diagnosed with breast cancer but I can't complain because after many years it gave me something to work with.  I made a zine. I added some illustrations and a few handwritten bits, scanned it and then my husband made it all nice on the computer and we printed them up. 

At the show, there were two types of people.  People who were clearly so not comfortable with me talking matter of factly about cancer, and those who welcomed the conversation.  Many were surprised about how well I was dealing.  Surprised that only three weeks after, I had already done so much writing and talking about it.

A lot of people have been asking me why I am being so open about this time in my life.  I think it's simple and maybe a bit selfish.  You see, I don't want to be alone with this cancer.  I don't want to feel like I have been forgotten.  I also feel strongly about processing it the way I can, through my art.   I feel like one of the powers that I have in the world is opening my mouth, and speaking to things that are often quieted.  When I was a kid, cancer was only talked about in hushed tones, referred to as the c-word.  I don't want to contribute to a culture of shame that patients of this crap disease deal with.  I am honestly too tired of whispering about this and that, tired of taboos.  

I don't claim to know a lot of things in life, but I do know that cancer touches a lot of people.  For so many of us, we have had a parent, a friend, maybe a neighbour who has been diagnosed. But because we are not accustomed to talk about these difficult situations, people feel alone.  To me that is one of the crappiest things ever.  My hope is that by talking about my story, that perhaps someone out there won't feel alone, and will feel inspired to reach out to those around them.

But here's the thing, something i mentioned in earlier posts, that for me, it's hard to ask for help.  Twice this week I had to ask  for a ride to an appointment and for some help with childcare.  It took me a few days to muster the strength to do this, but when i did, it was such a relief.  

I realized that people want to help, and sometimes they don't know exactly how to help.  So giving them a concrete thing, like, please bring me soup, hang out with my kid, can you drive me to an appointment helps them help me, which makes everyone happy.  My community has been stellar with so many people reaching out to me. Even writing this makes me a bit mushy.  

Today I got a radioactive seed placed inside my tumour.  They used a geiger counter to make sure it was placed correctly.  It was very weird.  My friend Tor drove me to the appointment, and then, Karen picked up Max afterschool and hung out with him till dinner time after I had a nap. 

These days I am tired.  More emotionally than anything else.  The waiting is the worst.  In one week I will have surgery to remove this tumour, and we will be able to move on to treatment.  I will find out what I need more and more of as each day passes, and that will be welcome.  Wading in the unknown is tough, and knowledge is helpful, for me and my dear ones.  In the mean time, I continue to live out loud dear friends.  It's the only thing I know how to do REALLY well ;-)  

Early Morning

I seem to wake everyday between 3:30 and 4:00 am.

It's the time of day where everything is quiet. 

For the first few minutes I am at peace, and as i begin to wake up and remember my situation my brain starts racing. 

And Breathe. 

It goes from thought to thought.  Some of my thoughts this morning look like this: 

Never in my life did I think that I would have cancer.  

I have been around those with cancer.  I helped my father when he was sick with multiple myeloma.  Been a support for some of my dearest friends.  You see, I am good at taking care of others.  I am not good at being taken care of.  

I think about the language of cancer. Of the battle, of how we are going to kick it in the ass.  And how I feel confused about that language within my own body.  

I think about this slow growing tumour.  Sometimes I feel it, and I wish it was out of my body, not in it.   

I think about my dad a lot.  About how wrecked he would be if he were here.  But also about how much I miss him.  I remember the time i had my wisdom teeth out and how he made me chicken noodle soup.  

And i think about how strong people say that I am.  But none of this feels strong. It feels scary. It feels overwhelming. 

I try to stay positive. I listen to the sounds outside my window.  The birds begin chirping.  At first it's just one bird, and then they all start to chime in, as if it's their daily song to wake up to.  And then they start to quiet, the same way my brain does. 

My thoughts begin to slow down.  

I breathe. 

and I close my eyes. 

And try to find peace from these early morning thoughts. 

Breathing Deeply

So, on Friday I had my first appointment with the Juravinski team. 

I was trying to keep myself busy before the appointment but it was proving to be a challenge. I have, in the past, been described as a "totally positive hyperactive over achiever" and in my work as a curator of events, a bookseller and an artist it has served me well. But in these days of waiting, I wish my mile a minute brain would just chill the heck out.  

The past three months prior to this diagnosis I started meditating. And the past few days these new ways of focusing have helped me quite a bit. 

When we walked into the clinic, I could barely breathe. You see, my mile a minute brain had convinced me that I was about to hear the worst diagnosis ever. Thankfully it was quite the opposite.

I have Stage 0 Ductal Carcinoma In Situ. I will have a lumpectomy followed by chemotherapy and radiation. Of course after the surgery they do more tests to see that nothing has changed. If it has, we come up with another plan. 

According to my doctor, if you do have breast cancer, this is the best breast cancer to have. 

It's my 11th wedding anniversary today and we are at a cottage in Port Dover. I know that the coming months will be difficult, but for the next few weeks until the treatment begins, I plan to take care of myself emotionally and physically. I plan to see those I love dearly. I am going to eat healthy food. Tonight as I watch the stars above, for the first time in weeks I am breathing deeply.