Do I have the courage to suffer?
It’s been a rocky couple days. Like we hit a broken section of the MBC roller coaster. But, the car is still on the track. Just stuck as we process this disappointing news and make a plan to get the ride up and running.
I’ve been doing updates on social media. It’s just the easiest way for me to get an update out there without having to repeat myself hundreds of times to friends and family. Thanks for understanding. You can find updates on my instagram and facebook pages. I can’t respond to everyone right now, but please know- I am grateful for your messages and support, so very grateful.
The hardest thing for me is that I’ve seen how this plays out. The gift and curse of Hope Scarves and my advocacy work is I meet many amazing women facing MBC. I also watch them die. And, it’s a rather predictable, terrible scenario. Cancer progression, toxic treatments, clinical trials, scans, hopes crushed by more progression. Their bodies crumpling under the weight of the disease and the despair. I have been an exceptional responder – experiencing durable stability for years. Allowing me to hold these women’s hands, listen to their fears and separate them from my own. All along, I knew this was coming. But, I admittedly began to think perhaps I would be an exception. Lasting years on a drug instead of months – feeling strong and living my life despite the disease. And, I did – for over 7 years.
However, today feels much different. The weight of this progression and the seriousness of my breathing issues has sent me into a free fall. My next move is to have a surgery to help me breath and drain the fluid from around my lungs. The surgeon will go in with a camera and try to get tissue samples from the pleural lining that will help determine the next best treatment. The surgery can go one of two ways – once they get a tissue sample, they will try for a pleurodesis which essentially glues the lining of your lung to your lung and eliminates the space for fluid to build up. The surgeon feels this is unlikely going to work because my lungs are so compromised from the fluid. They didn’t inflate as much as they hoped after the thoracentesis- indicating they no longer have their full range of capacity. If they can’t inflate, they can’t do the glue. And they move to option B: a pleurX catheter (Sounds like a cool mountain bike or something, apart from the catheter part…). This procedure involves installing a drain that runs under your skin and comes out your side. It coils up under a bandage (no cool fanny pack). Then, I drain it myself daily or as often as needed to relieve the fluid. My first question was, can I swim? The doctor said it’s not a good idea for risk of infection… and I fought back tears. I live in the water all summer. I’ve never in my entire life experienced a summer when I didn’t jump in the waves of lake Michigan. Deep breaths… which I can’t even do without pain or coughing.
The surgery and the drain situation doesn’t treat the cancer. It is purely palliative to help me breath. The next step is to determine from the sample if there are any genetic indicators that can help us make a good choice on the next line of treatment; IV chemo, immunotherapy clinical trial, endocrine therapy, etc…
The common practice with MBC is you try to stay on a treatment as long as it works and when it fails you switch. Usually, each time the drug works for less time. My first treatment was arimidex and it worked for 5 years. So, in my determined way, I thought, ok so the next one will work for 4.5 years… instead I got about 1 year on Ibrance. And, only 9 months on Xeloda. You can work out what most likely lies ahead for me on this cadence… treat, scan, fail, switch, etc…. Anxiety, panic, fear. Side effects, decreased quality of life, inevitability of it all being in vain.
I don’t mean to sound like a total downer, but I feel it’s important for people to realize the reality of MBC. I feel my thriving has given a false sense of ease to a disease that kills 114 people every day. I have been a glorious exception… This is a pretty big pivot point for me and I’m terrified. I know people say positive comments to support and encourage me, but recently the positivity has become toxic. Because I can’t “fight” my way out of this. I’m not going to “beat” this… no matter how strong I am. This is scary and I am just being as real as I can so you know….
All that being said, I’m not giving up. I leave room for a miracle, always. I leave room for science to accelerate treatment options or figure out a way to make immunotherapy that has worked in other cancers work in breast. I don’t know what is going to happen. But, I am grounded in reality. And, I will not only leave room, but work as hard as I can to raise money that directly supports MBC researchers. If not for me, for the next young mom.
As I have often explained, I hold both fear and joy in the same hand at the same time. Right now it’s a lot more fear.
I am afraid of being a burden and a bummer for my family & friends. I don’t want our adventure filled, ambitious, crazy projects, pack more into a day than seems possible way of living to change. But, it will. I can’t do all the things I once did. I don’t want my kids to remember me sick and sad. I am struggling to see the point in living a compromised life while I watch people around me thrive and live carefree. It breaks me to know I will be responsible for so much sadness in our family. I can’t bare the weight of the stress I will bring to Jay, Wills & Bennett. As moms, our life is about taking care of our family. I will be doing the exact opposite in the coming months, maybe years.
I will find the courage to suffer and the courage to flourish, regardless of what comes next. Because I know hope is not contingent. But, today, I am deep in the darkness – trying to find my way forward.
Thank you for loving me, supporting our family, showing up and simply listening to my story. I find comfort in this community of love.
With the knowledge that I might not be able to swim after surgery- I promptly decided I needed to dive in the ocean. I will be soaking up the Florida sun on an island with Jay tomorrow and then a couple college friends are meeting me here later this week. Because, life is for living.
There is no greater story than a life well loved!
“A meaningful life is a flourishing life, marked by the courage to suffer and the courage to flourish - regardless of what comes next.”