This is Cancer.

rhea and kieran

This was one of the first pics of me feeding Kieran after losing my hair. These moments are incredibly special to me but still difficult in light of circumstances under which I had to stop nursing.

 

maddie and rhea2

Trying to make silly faces with Maddie.  She has been amazing through this (“Hair grows back, mama! You are still my mama inside!”) but I can tell it is starting to wear on her and it breaks my heart.

 

pills

Pills/creams/stuff I have had to take since being diagnosed. Amazingly, there are quite a few missing.

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Sleeping it off during a 9 hour (you read that right!) chemo session.

rhea

Day 5 after my last chemo and finally waking up with no bone pain!

 

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First warm day. First day at the playground. First swing for Kieran.

 

maddie and rhea

Walking Maddie to school.

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Getting wiggy with it at Maddie’s kindie concert. Her teacher was amazing and set up chairs in the front row and ushered us in before the crowds came. Maddie got to introduce her class and I was so thankful to be there.

rhea and trina

Chemo fail. Last Monday, my incredible Trina showed up to take care of me with BAGS of snacks and crazy headbands.  We waited to see my oncologist and then I got sent home. Luckily, she stuck around and we went out for lunch, so all was not lost!

Finally, in an effort to be honest, I know all of these pictures show a lot of smiling but for every smile, there are days of tears. I just don’t take pictures those days 😛

Missing in Action

I have been missing in action. The last two weeks have been difficult around these parts. Kieran got a cold and I spent a week dodging it before it finally got me one week after he first started showing symptoms.  By the time I went in for chemotherapy last Monday, I was too sick to be treated. A simple cold has persisted for 8 days now for me and was far worse than the cold that both Maddie and Kieran had. I am rescheduled for my 6th round of chemotherapy tomorrow but I am certainly much more fearful of getting sick now, as constant delay in treatment is not ok. I have started to wear a mask in my own house and have stopped going out to try and ensure that I get better more quickly and to hopefully prevent this from happening again. In any case, I just haven’t been able to write about what it is like to be quarantined in my own house and away from Ryan and the kids. Let’s just say it has been just awesome for my mental health! Ryan said I should make a post with just pictures and I thought that was a pretty good idea.

On Hope and Fear

The thing about cancer is that it changes everything. It changes things in ways that are unpredictable.  It changes things in ways that are surprising.

It changes your confidence in your self. I didn’t realize until I began treatment that I used my hair, my contact lenses and my makeup as tools of defence, things that made me comfortable when I went out. With the number of side effects I have had with my skin, I now must face the world defenceless, vulnerable.  I’ve come to realize that no one really notices what you look like and that this perceived vulnerability is a uniquely female experience (good old patriarchy!). I look forward to the day when I choose to go out “defenceless” and feel confident doing so.

It changes your relationship with your friends. It has become challenging to talk to people who are healthy about normal things.  Small talk becomes a chore. I am at a loss for things to say. Joining online support groups, going to support centres like Hearth Place, reading old messages from all of you about your own family members beating cancer and meeting other young moms with breast cancer have been an immense source of comfort for me, showing me the strength and courage with which ordinary people live their lives with cancer.

It changes your relationship with your children. I struggle to do the simple things with them. It is difficult to concentrate on a bedtime story, painful to be hit accidentally in areas that are still healing, exhausting to give them a bath, nauseating to feed them dinner. I used to feel guilty that I could not do these things as easily anymore. Now I try to imagine each moment that I am able to spend with them as a small victory.

It changes your relationship with your body and mind. I have succumbed to the process of treatment: surgery, chemotherapy, endless numbers of pills and in doing so, my body has become unrecognizable.  My mind is cloudy, memories blur into one another, the right words slip through my fingers. When I am able to, I try to understand my body as strong and resilient, enduring so much already. I remind myself to take care of the body that has taken care of me for so long.

It changes your relationship with your partner. This has been maybe the most difficult to deal with as treatment has created a divide between us. Constant nausea and hot flashes make it impossible for us to even sleep together. We both struggle mentally with the worst possible outcome, imagining my life without me, but because it means two totally different things for each of us, we struggle to relate to one another. What do I say to someone who is terrified of being left behind to continue the life we built together by himself? What does he say to me when I consider that this may be the best time I have left; that I may not be one of the lucky ones who make it? There is more silence in our house and it is profoundly lonely.

These are the battles that are fought upon my body and upon my mind every second of every day in my war against cancer. It is not that I want cancer to take over my life. Far from it. I hate every moment it steals away from me. It is more like it is the lens through which everything must now be viewed. If there is a merciful moment where I am able to forget, the physical reminders (the black nails, bloodshot eyes, eyelashes and eyebrows in your tea, the constant lump in my throat) are always there to remind me again. In spite of these changes, most days I am hopeful.  Hopeful that I will be one of the lucky ones, hopeful that my cancer will not return, hopeful that my experience will make me a more grateful, sensitive and kind person and hopeful that these changes will eventually help me to lead my life with greater passion and less fear.

Complications

Last week was tough.  A few days after my last post, I developed a blistering, peeling, painful rash over the weekend.  Since I am not allowed to go to Emergency Rooms due to my low immunity, my hospital offers an oncologist on-call who is able to give you advice on what to do in case of an emergency after hours (very cool service, btw).  By sending him a few a pictures, he diagnosed me with shingles, a not uncommon side effect of chemotherapy, but made extra complicated because of several factors.  Shingles is very contagious and mine was located on my face, a place that is difficult to keep covered and away from prying little hands. The doctor also told me that my children had already been exposed.  While my 5 year old has been vaccinated, my 14 moth-old was not old enough yet to get his vaccine. Ryan has had chicken pox but was still at risk of developing shingles as well. Pox-baby, cancer-wife, Ryan-with-shingles AND March Break? Sounds like my idea of a good time! I haven’t even talked about what my face looked like! Let’s just say being bald was the LEAST of my problems. It looked like a fungus had invaded the entire skin around my mouth.  I am definitely not brave enough to post a picture of THAT.  On top of all that, because shingles is a viral infection, my chemo for the Monday was also cancelled, putting me back a week with my treatments.

All that news was a bummer. I’m not going to lie. But things got better. After four very long days with no treatment for my face (which was on fire, let me tell you!), my oncologist got me an emergency appointment with a dermatologist who said it was NOT shingles! Apparently some people are prone to getting skin infections while undergoing treatment and that this is a sign that the chemo is working well?! Yay?! Listen, I was just happy that there was no pox-baby to deal with! So with that good news, I took my extra week with no treatment, where I had a bit more of an appetite and a decent amount of immunity, as a little mini-vacation.  I took Maddie out for a few activities, went out for dinner with Ryan, went out for lunch with family, saw some friends and tried to make the best of it. Face fungus and all. 🙂

PS: A HUGE thank you to the amazing Karl Lagerfeld, esquire for this blog reboot. Doesn’t it look so much better?

 

Chemotherapy

Bone pain. Shingles. Nail loss.  Throat and mouth sores.  Early menopause.  Infertility.  You didn’t know that these were common side effects of chemotherapy?  Neither did I, my friend.  Probably the most frequently asked question I get is about chemotherapy.  I get it. You guys don’t know what it’s like and it is scary.  This post will walk you through a chemo session which really is a piece of cake compared to what happens after one of them, but that is for another post.

The day starts at 9 a.m. with a whole lot of pills. Most are to help with nausea but some are steroids to help with recovery.

Once I get there, I put a patch of numbing cream on this bad boy below:

Titanium implantable port

What is that you ask? That is port. It is a device I had surgically implanted into my chest that has a catheter that is inserted into a central line in my body (medicine is amazing!).  This means I do not have to have an IV done each time I have chemotherapy.  They simply feel for my port and insert a needle into my chest.  Does it hurt?  Well surgery was short but recovery was still pretty painful for two weeks.  The actual insertion of the needle each time at best feels like a flu shot to the boob. Still better than them digging around in my tiny veins, in my opinion.  It also means that I don’t have sore IV sites and I can play with the kids more easily.  This is me at the chemo clinic waiting for the cream to numb the site before the needle is put in, it usually takes about 45 minutes. Fun fact: I now get something called “anticipatory nausea” which is when my body begins to feel extreme nausea and anxiety before I go in for my chemo sessions!

This is what it looks like with the needle put in.  Not too bad.

This is my set up.  I get a big chair, a TV, a window, snacks, whatever I need.  The drugs usually take about 2 hours to administer.

I started at about 10 a.m. and was done by about 1:30 p.m.  Then I go home and rest.

I know it has taken my a long time to write. This was the week I lost my hair. The pictures above were taken last Monday.  By Tuesday, my hair was falling out by the handfuls and on Thursday I had my head shaved by the lovely Sarah at Turning Hedz and looked like this:

Sorry for the blurriness.  It is a big change over only 3 days.  Hair loss happens very quickly and is no joke.  It is a tough thing to constantly find your hair everywhere and all over everything.  I struggled for a whole week, wondering if I would post this picture but, you want to know the story and I want to tell it to you.

Overwhelmed

You guys, I am overwhelmed by the amount of support you have shown me.  Your messages of hope, resilience and encouragement are getting me through these rough, rough days.  I know I haven’t responded to many of you but please know that it is my intention to do so in a way that honours each of your messages to me.  It just takes me a lot more time right now.  The chemotherapy makes it hard for me to concentrate and screens are particularly hard. Please know that your messages are appreciated and have made me laugh and cry at how lucky I am to have all of you.  It has been a hard week full of challenges.  My hair was falling out by the handfuls and I decided to shave it yesterday.  I knew it was going to happen around day 14 of treatment but I still felt unprepared.  Cancer sucks.

Things that are hard

While I am generally able to be surprisingly positive about most things, I don’t want to give you the impression that I shit rainbows and that everything is puppies and love around here.  Today is a good day to talk about bad stuff. I really struggled with this post because I couldn’t decide if writing about these things would make them more real somehow. Ultimately, I decided that sharing them might make my burden a little lighter and help me come to terms with some of these things as my new reality. So here are my “top” nine things that have been hard.

  1. The first time I told a stranger I had breast cancer. He was the lovely young man who did my bone scan after my diagnosis. I left Ryan in the waiting room, and the man started my IV and asked what brought me in. It seemed like I was talking about someone else when I told him.
  2. When I was told to immediately wean Kieran. This was also on diagnosis day. Having breast cancer means you can’t breast feed. I did not cry when I was told I had cancer. But I did cry when I realized that Kieran’s last feed had happened earlier that day and that things would never be the same.
  3. I was Kieran’s primary caregiver. 6 days after diagnosis, I couldn’t pick him up. My surgery made it impossible for me to pick up my son and cuddle him. Ryan has done an amazing job of taking care of Kieran, but there were days I was too sad to get out of bed.
  4. Pumping and dumping after surgery. After my partial mastectomy, I still had milk and was in danger of developing mastitis. I had to pump daily to wean my very confused breasts. I hated pumping on a good day. This just made me angry and sad.
  5. The long nights between my diagnosis and the scan results that would tell me if my cancer had spread. Those five nights were exhausting. Sleep was non-existent, pacing was mandatory. I would sneak into Maddie’s room and just lay beside her until the sun rose.
  6. Ryan’s explanation of how we had been together longer than we had been apart. That our lives and selves had become so intertwined that he didn’t know how to be himself without me.
  7. Wondering how Ryan will cope without his Rhea and how Maddie and Kieran will cope without their mama.
  8. The fear that my children will know me through pictures. That I may never see Maddie graduate from grade school or walk Kieran to his first day of school or know what they look like as adults.
  9. The crushing guilt that because of me, my family has to endure this. And that my children now are genetically predisposed to cancer.