I count appointments, small wins, month to month, day by day, because there’s no line we cross or distinguishing number that says we’re ‘done’.
This was originally our 2nd last appt of the year (5 of 6) but on the long ride there – rheumatology called and booked me in on the 20th 😆
so much for a finish line
But here are some pretty big numbers I was reminded of today…
While crying in disbelief with the nurses that saw me today, hand in hand we reminisced over all those numbers that led me here
Two 10+ hour surgeries
3 minutes flat lined
Over 900 days straight of non stop treatments
11 months radio silence – can’t read write speak
12 weeks admitted on the palliative care floor
1 nurse to suspect the medication was the problem
November 2018 – I got my voice back
3 months painful rapid detox that saved my life
NYE 2019 – I wished to celebrate the new year in a gown, in a castle, in the arms of my husband, out of the hospital. Like many others, I got my wish. That was the first of the miracles, we danced the night away with swollen legs, a traumatized body and mind, and a grateful heart.
So much happened from there to here, like the time we sold our house liquidating our life savings and retirement to move me close to the hospital that saved me. Having just been told I’d had a year or less to live and not knowing if that still applied. Being too afraid to ask, life came alive. We figured if I wouldn’t make it to retirement… we would enjoy it while I’m alive to do so. We simulated retirement living at 26 thinking I’d die, so I might as well die fabulously.
Through random Tuesday high tea and pedicures, spontaneous zoo visits, Monday amusement park adventures, spa days, a dream accessible building with a door man and secure feeling, access to all the physio I needed to learn to walk again. Daily swims, walks by the water, in awe and confusion of what would happen. 1 year and a lot of credit card debt later, I even got to swim with dolphins and be proposed to all over again. Life became a dream and a blur – but not in the way I’d been used to. We were just having so much fun not knowing, we embraced the craziness of it all – acting like the rest was nothing but a nightmare. We created our own reality, and in our world – dying wasn’t welcome
It was a fun distraction to just be reckless and not have a care in the world, but we had to face reality.
2019 was an entire year of rebuilding strength, my body and mind. Swimming, rehab, physio, walking, continuous small steps to make sense of something we still didn’t fully understand.
What caused me to almost die?
Yes I have a terminal illness, I have cancer, the tumors are angry adrenaline firing assholes. We get that. But that wasn’t it anymore, we kept being told it didn’t match the symptoms. I knew deep down there was something being missed. It wasn’t the cause of whatever this was
We knew the medication I was being given was shutting my body down, opioids specifically. The very medication I was being given every hour on the hour to try to relieve my pain.
The medication that took my breath away, made my skin peel off my body from the flushing, the medication that instead of relieving pain – caused more.
First, you can’t take opioid medications with the type of tumors I have – pheochromocytomas are actively secreting tumors. When given these meds, the pain medication creates a similar chemical response in the body. It makes an adrenaline storm
Second, but most importantly – I had an undiagnosed rare condition secondary to the cancer called mast cell activation syndrome or disorder. This explained it all. It put all the final pieces together.
I fought hard and long to figure it all out, with the endless care of my husband, and the guidance of a friend brave enough to speak up to let us know.
The last 2 years I’ve spent eliminating trigger foods from my diet, medications, fragrances, activities, etc. I have implemented numerous routines to heal my nervous system. I am in continuous healing mode, this is why. I’ve had to make peace with the anger, the guilt, the grief. I can’t live in anger that I suffered unnecessarily- I chose to heal.
So I could tell my story from an empowered place
When I’m asked, “what did you do different?” or “what was the major contributing factor to your turn around?” I wish there was one thing I could share to help others… but we are all different, and it’s often not just one thing. It’s a string of events and multiple small efforts that add up to make big impacts.
I’ve done a lot of reflecting, trauma therapy, meditation, inner work, heart work, self growth… and I keep asking “what saved me”
I realize now, it doesn’t matter.
I wanted a neatly tied box with a clear answer inside because I’m type A and need to be in control, I have to help others through my pain, it has to make sense. It can’t be for nothing. I can’t let this happen to anyone else.
But whether or not I have the exact answer, I’ve gotten a miracle. I’m here on this earth and my words help others every day. My experience helps others navigate their own much smoother because I have my voice back. My blog will always live as the words I desperately needed to hear when I was suffering. It’s not for nothing, it’s so much bigger than I can ever realize.
My eyes are open and I see it every day in the comments, the messages, the questions, the stories of how you were diagnosed because of me. Through your time saved looking for your why, I can accept mine. All the times I’ve heard that “because of me” you have answers. “Because of me” you were able to advocate for yourself and feel empowered, my why is loud and clear. The answers are there, in all of you.
I have and will continue to share what I know on a regular basis. All the info I learn, you learn.
My miracle is our miracle
It doesn’t matter why, what matters is all the days and time and pain that delivered me to this very moment. Walking into the cancer centre today, using my voice to thank those who never gave up on me. Crying and laughing together in disbelief
I came and left holding the hand of the person who fought harder than anyone for me, who didn’t let anyone give up on me or say no, who kept me alive himself with a home breathing machine, doctor cupcakes himself. You were my voice when I didn’t have one, and you kept life ‘normal’ through all the chaos. You were my miracle all along
As always, I had no idea what would come out of my body when I began writing today. I thought I’d do a brief update and year end health summary…
But for now, all I have to say is this:
I didn’t finish the year with all my questions answered. I still have new mystery symptoms, breast lumps, a thyroid cancer scare, pains and spasms. We still have a ways to go, an urgent mammogram ultrasound and CT to start the year.
If we hadn’t lived through what I just described, I’d be losing my shit having to wait that long.
Today when I filled my oncologist in on the breast lumps found and the urgent mammo request that hasn’t been followed up with – he arranged to have a scan first thing in January.
For now, I feel at peace with everything that’s led me here. I am calm, grateful, and feel in control.
I feel heard, loved, curious, powerful, and excited.
I could be upset about the new year starting with another test, another medical mystery, another scare. But I choose to trust I’ve done all that I can do, embracing the unknown.
I can’t think of a more powerful way to finish the year, stable, and leaning into this new found glory.
It took a while to get here, Thank you for believing and making space for me to heal against all odds. Let’s finish the year strong, what do you say we do something really crazy?
Let’s just be normal for a while, k? I’m not going anywhere, I promise. We can chill on the helicopters for a bit. Here’s to a…normal-ish year
Well, a fabulous normal! 😉💖
Love you all, drop a question, tell your story, join me on Instagram and tiktok. Stay connected and most importantly stay fab
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