And then what?

It's been one week since I rang the bell.  

I was going to write here but this past week has been a blur of sleep and pain and joy.  My skin is slowly healing and I am adjusting to all medications.  Soon I will be able to walk around with no pain when I move my arm and I can't wait.

I am officially done now.  No more daily appointments of getting radiated.  No more drop offs of food.  No more feeling taken care of by medical experts.  And for that, I am happy. 

So how is it that I feel scared?  I feel a bit alone.  Not sure what I do next.  

But after I talk to my dear friend Gary, he reminds me that I take the time to heal.  He reminds me in his gentle strong way that I get back to being Lisa, the one that I was before I was diagnosed.  He's right.  I get back to being an artist, and a mother, a wife and a friend and not the full time care giver of this stupid disease.  In fact, I think that if I have learnt more than anything that I can't NOT get back to being me. 

Of course, I am different.  Cancer changes your brain, the way you think and all of that.  For me, it's clarified who my community is, and reminded me of the love they have for me and I for them.  It's also strengthened my believe in stories. 

So I ask, now what?

It's time for stories of healing, and survival.  It's time to read more stories.  To create art of these stories and to share that far and wide.  

When I started this blog it was about my cancer.  But it was also about my art and life.  Indeed.  I have shared many stories of cancer, now it's time to share my art that will help me heal from these past months.  I can't wait to share. 

Thoughts

Here are some thoughts and facts about my recent days. 

1. Today I finally started radiation. 

Four weeks of radiation five days a week.  It's going to be a challenge, and I might go a bit cuckoo, but I have started. 

2. I sometimes feel guilty.  

It's been a long time since I have written.  I think that I have felt stuck with my thoughts about all of this.  I have been feeling goodish, and so it felt strange to talk about being sick with cancer, because I wasn't sick.  That caused a strange feeling of guilt. I know so many others who are sicker, with more complicated situations, and who am I to complain, and so on and so forth.  

I have been reaching out to some lovely women who have gone through this, and they assure me that any stage of this disease is bad because it is cancer.  It is tough and it changes us.  And so enough with guilt. It doesn't help anyone. It just makes me paralyzed. 

3.  Soup helps.  

Two weeks ago I started a hormone blocker called Tamoxifen which blocks my estrogen.  I will be taking that for ten years.  It has many strange side effects and essentially I have been put into medical menopause - BUT - I can still get pregnant. NO FAIR!  Anyhow, as I have started feeling not so good, the one thing that helps is soup.  Simple, homemade soup. 

4. Radiation is strange. 

 I can't help think about all of the pop culture references to radiation and how it breeds sea monsters, two headed goats and other such creatures.  I also know what real radiation has done to large groups of people in Hiroshima and Chernobyl.  Horrible.  I now have to flip that thought around and make it my friend.  Weird.  Still trying to figure this one out. 

5.  Enough is enough. 

When I met with a therapist, she couldn't believe how much trauma I have been through in the past 6  years.  2 miscarriages, a dad with cancer, a baby in hospital with very serious ailments (max is much better and has a very good belly scar) , a car accident, death of my father and NOW this diagnosis of breast cancer.  Come on, world.  I am a nice person.  After this is all done,  please take a hiatus of crappy happenings for me, okay?  At least one year of greatness with no big crappy traumatic thing. I am only so strong. 

6. People really are kind and generous

I did a GoFundMe campaign over here https://www.gofundme.com/LisaPNBreastCancer.  Thanks to the great help of my friend Lori Yates (also an amazing musician!) who urged me to put it up. I was iffy about doing it, but it has really helped me and my little family feel some relief as we move through this time of treatment and healing.  People who I have known forever donated, and people who I have not seen for years, next to total strangers.  Yeesh.  My heart is full.  

7.  Sometimes cat videos will make you smile. 

There is nothing more to this.  Just that the little things matter. 

8.  Little people make everything better. 

Here is the evidence.  Me and my son Max.  My heart grows ten times bigger every time I see it. 

Art Makes Me Stronger

On Friday night I found myself at the Workers Arts and Heritage Center for a concert.  The band was Sandcatchers which was described as "Jewish tradition & Maqam on the Appalachian Trail."  I wasn't sure what to expect, but i knew that it would be good, because everything that Zula presents, a local music organization is of highest quality.  This night was exceptional.  

It was a beautiful warm night, and the concert was in the backyard of the Center, which I had only ever seen through a window, never experienced. It was perfect.  The band, four lovelies musicians nestled under the trees playing such original, honest songs warmed my heart.  The audience consisted mostly of friends and my six year old son and husband.  As I sat listening, I would tilt my head back just so slightly and look at the stars.  It was rather magical indeed.  As Max started to get antsy we went behind the chairs and danced barefoot in the grass.  If felt so good to just move.  Since my surgery in July, I haven't been able to dance the way I used to, as it would cause discomfort and pain.  But on Friday night, with that music, surrounded by those people I was able to dance.  I wasn't jumping up and down, but I moved my body in it's new way and that made me so very happy. 

I have been off of work for two months now, and on Tuesday I will go back to the bookstore and I am getting ready for a craft show in September.  I am healed from the surgery and I am waiting to find out the dates for my treatments which will most probably start in October.  I am trying to get healthy and strong before the treatment knocks the wind out of me.  I am doing the usual things of eating healthier foods, doing more exercise, sleeping well and surrounding myself with positivity and love.  

The other thing I am doing is I am taking in a lot of art.  Be it this concert, or watching films, seeing dance, or reading books, I am letting myself make art a priority and be part of my healing.  Art does something nothing else does.  It relaxes me, it makes me feel and it transcends the daily grind.  It takes me away from my thoughts of sickness and cancer.  It makes me forget about chemotherapy and tamoxifen and radiation and all that. It makes me feel alive. 

Truth be told that making art has become a struggle since I was diagnosed, but I am still showing up at the table and trying to make.  Fingers crossed it will all work out, but in the meantime, I look forward to a few weeks of music, film,  theatre, dance and visual art to give me some strength to go into this unknown, scary time of treatment.  

Taking Time

I haven't written in 21 days. 

That's 3 weeks.  

I have been a bit stuck, and quiet which for me is a bit rare.  

I am in limbo. 

I found out on Tuesday that my final diagnosis is Stage 1 Invasive Ductal Carcinoma, ER+, PR+, HER2-. I know that is a lot of gobbeldy gook, but in the end it means that  I will be getting 4 weeks of radiation and will be put on a hormone blocker for either 5 or 10 years of my life and will have many of the effects of menopause without actually being in menopause.  For the most part, it's a good diagnosis and it hasn't spread which is very positive. 

In two weeks I will make the final decision on whether or not to do chemotherapy based on the results of a test that has been sent to California which will tell us more about the possibility of recurrence.  I am seriously hoping for good results. I don't want to do chemotherapy. 

In the mean time, I take my time to think and to live. I do what is important to me.  I create art and live as fully as I can.  

But there is one thing.  Emotionally, I am exhausted.  Being in limbo for about 2 months straight is hard.  

I am a woman who some in the business world call a Quick Start. I get a gazillion ideas daily and the ones that stick I initiate as soon as possible.   After I finish that initiative, I get another idea aand want to move onto that.  So when I was diagnosed on June 17, I thought that I would immediately start treatments. I was like hup hup - let's get this underway.   But things take time.  Tests need to be done, and treatments seriously considered.  There is no jumping into an idea quickly unless the treatment plan is clear from the get go.  And that is not my situation.  

So I learn how to take my time.  How not to freak out.  How to educate myself in a way that isn't alarming but healing.  How to deal with friends who can't deal with the diagnosis and vanish from my life.  I am taking classes at the local cancer centre and am doing a few secret projects that keep me feeling creatively inspired.  

For a few days I was feeling guilty about keeping this blog.  There are so many others in much more dire situations, and that along with others telling me how great my diagnosis is left me wondering what my problem is.  My diagnosis is positive and they oncologists feel good about finding it very early.  And just a couple of nights ago,  I realized that was stupid.  I have cancer.  It's important that I don't discredit my experience, because at the end of the day this is a horrible disease no matter what stage and I do believe that it has changed my outlook on life.  For better and for worse.  

Tomorrow is my son's 6th Birthday.  We will spend the day at the beach surrounded by our loved ones.  There is no other thing I would rather be doing.  Taking time out to celebrate his life, and soak in the lake, and enjoy our time together. 

I urge you to take the time to be with your loved ones.  Do what you want.  Take your time. Because right now, it's yours to take. 

A New Lens

Cancer is hard.  It changes the way you think about things, and it also gives you a new way to look at the world.  

In a short 6 weeks since being diagnosed it has I have learnt that: 

1. Life is truly short.  We need to make sure that we are doing what we want to do, being who we are and that we are surrounded by those we love.

2. Bullshit is not acceptable. At all. Ever. Deal with it. 

3. People are weird, and some people vanish because they don't know what to do or say and the feelings that come up are way too scary.  I wish that I too could vanish from this all, but I have no choice.  When I have talked to people candidly and openly about my diagnosis they seem so relieved.  And generous.  It's important to take the time with people, because if you can get past the fear, and connect, well, that's the best. 

4. You want to do exactly what is important to you. I want to go back to Spain to where my father came from so I can show my son.  I want to continue collecting stories. I want to grow the theatre and dance audiences in my city.  I want to make art that matters. I want to work on a project that gives cancer patients and their families an opportunity to be creative in a meaningful way while in hospital wards, doctors offices, and waiting rooms.  Getting my hands moving  has helped me so much when my father was diagnosed, and now that i am a cancer patient. These are just seeds and will most probably remain that way until after my treatments, but it's important to identify what means the most to you.  

On Thursday night, I went to one of my all time favourite dance events, Dusk Dances.  For many years it has been in Toronto and 3 years ago they brought this event to Hamilton at lovely Bayfront Park.  It's a night unlike any other.  Audience gathers to a band playing, and then a host appears (this year its' the lovely Nina Gilmour as Madame Pink Lady.)  She lets us know that we will be walking around the park to see four dance pieces.  Disclaimer: I have been a host before in 2009 in Vancouver as the fiesty Ms Lula and know many of the performers involved.  The pieces performed were stunning, so human, and so full of love.  The last piece in particular, Incandescent was excellent.  It was choreographed by Meredith Thompson and Kate Franklin and it featured over 20 community members in a modern piece that took my breathe a way.  The night I went, it was a bit cloudy and far in the distance as the dancers appeared on the horizon, we were treated to a few bolts of lightning that illuminated the sky and the dancers beautifully.  To me, the piece was about life and death, about connection with others, and love.  

As i watched it I was moved to tears.  I watched some people that I have strong connections with dance beautifully as I sat and my body hurt from last weeks surgery.  I wanted to move, I wanted to be dancing with them.  It was, for a moment, a little solo pity party, but then as I watched and thought and felt, it occured to me, that I am changed.  I was watching this piece with a very new lens.  

My new lens allows me to truly be in the moment.  It allows for me to enjoy and for me to feel deeper than I had before.  This lens shows me what is most important in life.  It has made me feel more and think less.  And right now, that is a great thing.  

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.  

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 ;-)