January 18, 2019
My husband and I have two sons, Max and Jacob.
It’s late. As I write this, we’ve just returned from a soccer tournament that was a 40-minute drive from home, in a blizzard, and finally they're both in bed.
The thing is, being a parent doesn’t stop for anything. Not for blizzards, not for late nights, and not for cancer.
How did we get here
It was July 2017, and I had just gone through another round of CT scans. Checking my voicemail, I heard the familiar voice of my oncologist.
“Hi, Julie,” she says in her quiet, steady voice. “I have your lab results back and I’d like to discuss them with you.”
My blood runs cold, my heart stops for a second and then starts pounding hard. Followup? No. Not again. Not now.
She never calls if the tests are clean. Followup is not positive. I start to cry, hot tears on my bewildered face. I look up to the ceiling, to the God beyond the ceiling.
No – please, no.
I will do anything, endure anything, give anything not to have to put my family through this again.
Not to have to tell my children and my husband and my parents and everyone that it’s back, again.
I am living with retroperitoneal leiomyosarcoma (LMS), a cancer of the soft muscle tissue. It’s one of those super rare ones — about one in one million people have the exact diagnosis I do — which means there’s little funding for research or treatments.
I was told upon diagnosis at age 33 that I would be lucky to live five years. I’m three years into that at the time of this writing, and have been through three major surgeries — kidney, liver, lung — and many other interventions, including radiation, ablation, and chemotherapy.
That the cancer has metastasized puts me in what they call “stage four,” which, to put it bluntly, means I’m dying. It also means I’m very much living. Today, this very day, I am 100 per cent alive.
The terrible news
Three years ago I told my family the terrible news. After excruciating pain, tests and biopsies, I had to tell them the “thing” they saw growing inside my abdomen was, in fact, cancer.
Those first days were scary for all of us. We tried to keep calm, and not tell the boys all the details, but there were some tears and fears around the house those days.
They didn't see those nights when I came back into their room after they were asleep. I would kneel by the side of their bed and look at their beautiful sleeping faces.
The pain is strong because the love is strong.
Please remember ...
We’ve come a long way.
Even though I have been through many surgeries, radiation, chemo and all the rest, cancer hasn’t (and can never) take our spirits, can it?
We all make the choice, every day, to look for the good in life. To build one another up, even on the hardest days. Here’s what I've learned, and what I want them to remember.
You cannot control what happens to you. Life is going to throw you some big challenges — it already has. Both of my children have been through divorce at very young ages, and my diagnosis of cancer a few years later.
As they grow, they’ll look back on all the ways these events affected their lives.
No, you cannot control what happens to you or around you. But in most cases, you can control how you react to these life events.
You can allow difficult life circumstances to teach you important coping mechanisms. Often, people tend to only see the negative parts of scenarios like this, but there are beautiful, poignant moments.
Look for those ones, carry those ones.
It’s easy to let your thoughts and feelings spiral downwards into constant fear. But you can, instead, choose hope. Through this life experience, my boys have developed a strength that will carry them through other trials.
They've learned how to manage anxiety and stress, and these are tools they will need for the rest of their lives. I’m grateful for the opportunities that we’ve had to learn these tools together.
Empathy is what will allow you to truly see the other people around you. My boys have seen me at my weakest moments. They’ve seen me unable to walk as I recovered from major surgeries. They’ve seen me lose my hair to chemo, and had our fun with “Bald Mom” and all my silly wigs.
I know that deep down, it bothers them to see me with no hair, because sometimes they tell me so.
They’ve seen me weak and nauseous, and you know what the two of them did? They brought me watermelon or ice or the barf bucket while I was in bed. They stroked my head, which I love, and gave me lots of hugs and smiles. They asked me how I was feeling, and if they could help.
This is because they have both developed a strong sense of empathy in the past three years. It will take them a long way.
When you get in a disagreement with someone, try to put yourself in their shoes. I’m sorry for the days that I didn’t have enough empathy or didn’t try to see things from their perspective. I’m grateful we could work through those days together and talk through them.
Fear can look like anger
I wish I had known this a long time ago. When someone is angry with you, stop and take a breath before lashing out in return, even though that’s what you may feel like doing.
If they’re yelling or behaving badly to you, try to see past their anger to the deeper current.
I remember swimming in the ocean in Hawaii. There’s a current that runs deeper than the surface. Maybe on the surface, people look angry. But probably underneath, they’re scared, or hurt. I’m just going to leave that idea here to ponder. It’s big.
Gratitude will change your life
On days when it doesn’t seem like you can think of anything to be thankful for — find something.
Be grateful for the water coming out of the tap. Be grateful for the air you’re breathing. Change your perspective and you change your life.
Take chances. You have no idea how much time you have on this planet, so don’t regret the things you didn’t do.
Say yes to big, crazy ideas, but know when to say no if those ideas can hurt you or others around you.
Be careful, but brave. Be kind, but have boundaries and be kind to yourself, too. Look for opportunities to share and give.
Be vulnerable; don’t shy away from expressing what you really feel or think with someone you trust. Believe in miracles, even when you may not see them. Cultivate faith. Embrace community.
This is the biggest lesson
Love wins, but it’s not easy. Fill your life with love. Whomever you choose to share your life with, if you do, will probably be the most wonderful and also the most difficult part of your life — so learn early to love often and exuberantly.
Max, my heart grew a million times the day you were born. I didn’t know I could love anyone so much.
Jacob, the day I became your stepmom was one of the most wonderful days of my life. I am so grateful for this special relationship.
David, the love that you show to me and our boys is the very centre of everything. While cancer can be very hard on relationships, I’m grateful that my husband chose to press in instead of run away.
Don’t get distracted by money, jobs, houses, world events. Always know that love, and protecting love, is the most important.
My beautiful boys. They cannot know how much they mean to me. I just want them to know that "Bald Mama" is planning to stick around as long as she can.