Momspiration: Renee Kaiman

Momspiration: Renee Kaiman

GET TO KNOW…

Renee Kaiman, blogger Behind MSCMOMMYLIFE, Stage IV Breast Cancer Survivor and Mama of 2 does a  photoshoot with Trish Mennell Photography

How old were you when you first discovered you had breast cancer? Talk to us a bit about your journey – your surgery, treatments. How were you able to get through it with two little kids? 

I was 33 years old when I was diagnosed with breast cancer. That was in March 2015. In January 2015 a lump had appeared in my left breast. It was at “12 o’clock”. It was large and palpable. I had finished breast feeding my son a few months earlier and had assumed it was a clogged milk duct. I kept an eye on it. At the end of Feb it was still there and went to the doctor to get it checked. I was sent for an ultrasound which turned into an immediate mammogram. After my mammogram the radiologist told me to take the images to Princess Margaret Hospital as it didn’t look good. I was devastated. No one in my family had cancer yet here I was. On March 13 2015 I went to PMH to the rapid diagnostic clinic. In the morning I had a breast biopsy. By the end of that day I was formally diagnosed with breast cancer. Over the next two weeks I had so many appointments as they needed to figure out what stage my cancer was and figure out what course of treatment I would have. I was diagnosed with early stage ER/HR+ Her2- breast cancer. 
On April 1, 2015 I started IV chemo. I did 6 rounds. About 10 days after my first round my hair started falling out in chunks and I decided to shave it off. I ordered clippers and my husband and I had a cry, and then laughed while he shaved my hair off. 
After my 6 rounds of chemo I had a double mastectomy. I decided not to have reconstruction as I was told that the radiation on my left side could cause problems with any implants. I stayed flat.  When I received the pathology report from my surgery I found out that my tumor bed was very, very large- about 8 cm x 8 cm but had shrunk drastically due to the chemo to under 1 cm x 1 cm. 
I had two months to recover from surgery before starting radiation. I had 25 rounds of radiation. Itspretty intense. I went daily for 5 weeks (Monday to Friday). The radiation itself was very easy but because my tumor was on my left side and the heart is on the left side, I needed to wear special breathing equipment to move my heart out of the way while they radiated my chest. It looked like scuba gear. I was told my skin would react to the radiation and mine was amazing up until day 21. After that my skin reacted and I ended up with horrible burns that needed to be treated at the radiation clinic. After a few weeks my skin healed perfectly.
At the same time that I started radiation I was put on Tamoxifen. I was told that I would need to stay on it for up to 10 years and that it would hopefully stop any spread.
Unfortunately, in October 2017, I found out after a bone scan for a little nagging pain that my cancer had spread to my bones. This was a huge shock. My cancer was now considered terminal and there is no cure. There are medications to treat it but at 36 it’s pretty awful to have a conversation with your oncologist about quality of life over quantity of life. 
I started my first line of treatment in December of 2017 after fighting with my insurance company for two months to cover a drug that they did not cover due to cost. Thankfully, they decided to cover the drug for 12 months (not a day longer) and the drug company put me on a compassionate program to cover the drug for as long as needed.  In the summer of 2019, after a regularly scheduled scan, we found out that my cancer had spread to my liver. I had zero symptoms and I was once again shocked to hear this news. So I switched to a different oral chemotherapy and have been on this drug ever since.  When you have terminal cancer, the drugs and options are limited so with each new progression the medications become more limited. This is why funding research is so important!

You are always seem to have a great attitude – how do you manage to stay so positive? 

From the beginning, I have said that my kids are my best medicine. They keep me going and get me out of bed each and every day. 

Also early on, I made a choice to be happy and find the beauty in everything no matter what else is going on in my life. It’s very easy to get caught up and focus on the horrible things in my life, but if I did that I would miss out on so much. We each only have one life to live, and even though I’m living with terminal cancer, I can still enjoy so many things!

As a breast cancer thriver - what are the biggest challenges with raising you children? How much do you tell them about what you are going through?  

This is a really sad question. The biggest challenge is knowing that I will miss out on so many things in my kids lives. I don’t know how long I have to live, so planning ahead or even thinking about big life events, and even the mundane daily events is devastating to me. How can I not be there cheering my son on in the stands at his hockey games? Who is going to get my daughter ready for her dance compeitions? How can I not be there for graduations, weddings, babies? It literally breaks my heart.

We are honest with our kids to what is age appropriate for them. We have told them that my cancer has spread. They know I take medicine and explained to them when the one medicine stopped working that I had to switch to another one. We’ve told them that they can talk about it with their friends or not. That choice is up to them. We also answer any questions as honestly as possible whenever they bring it up. We don’t want this to be a secret because kids are smart and very intuitive. We want them to feel very supported about this at all times. 

 How have you been personally managing having a terminal illness during a pandemic - is there anything you do that help keeps you grounded?

I think cancer has giving us the tools to pivot easily and figure stuff out quickly. So when we went into lockdown I don’t feel that it was as hard for us because we are continually making things work in the face of the unknown. 

Coffee, connecting with family and friends and doing things that make me feel good have kept me grounded during this time. My kids love having dance parties to a variety of music so that’s been something fun and uplifting!

We love your “fuck-it list” – how do you pick the places you go/ things you do. What have been some of your favourites and how do you continue this throughout Covid

I just sat down and wrote the list. It’s a culmination of things that I would like to do in my life, but know because of time, I might not be able to get them done. I also see the list as a living document, so as things come up and change I can add to it. 

My husband and I love tennis and we always said once we retire, we will travel around the world to see the 4 Major Tennis tournaments. So far, I’ve been to 2 out of the 4. The US Open, which we took the kids to and was an amazing family adventure and when I was in Europe last year, I went to the French Open. 

Taking my kids to Disney was also high on my priority list and we spent 2 days at Disney Land and one day at California Adventure in December 2018

Covid has made it trickier to travel and cross things off of my list. I just keep hoping that I’m well enough to travel once the numbers are more stable and travel opens up again. We’ve decided as a family that as soon as we can travel, we will be going to Paris! The kids want to see the Eiffel Tour, eat baguettes and visit my friend and her family. 

 What is your advice for women when it comes to breast cancer? On screening/ prevention and advocating for themselves? 

My advice to women would be to know your breasts. Know what your normal is by looking at them and touching them. Get comfortable with and start doing monthly breast exams. Also, advocate for yourself. Often, when you are young doctors might shrug you off especially if you don’t have any family history. Don’t get discouraged. Go and seek another opinion if needed. 

Also, if you are diagnosed with breast cancer, reaching out to other women in similar situations can offer a lot of comfort during a very scary time. 

And, take it day by day. It’s really stressful if you worry today, about a surgery or treatment in the future. Instead, make today awesome as best as you can. Find something to make you happy, or do something that makes you smile. Focusing on the now helps a lot and has helped in greatly reducing my anxiety about the future. 


Leave a comment