It's been a looooooong time since I've written an update on Michaels cancer. Right now, I'm actually stuck for the right words to say so I just blurted a bunch of words on to this page and hit publish. And Michael made this video for you after your outpouring of love on Instagram ....
Ps. In the video below... Michael shared when people talk about their experiences with cancer in their lives. We wholeheartedly know in our hearts, it's not to take away from the pain and suffering of a cancer patient. People share experiences to sympathize with what we are all going through. Cancer patients do want to hear your experiences (we are personally honoured that you want to share your story with us.) Honoured. On all levels. Michaels point is to just wait for those moments when you are talking with a cancer patient or loved one. Share them after you listen. Like, really listen. Listen with all your heart. xo
As many of you may know, 13 years ago Michael was originally diagnosed with a rare non Hodgkins lymphoma. The median survival rate was 5 years. Yet, here he is... already a walking miracle. Three years ago, his cancer transformed into a deadly leptomeningeal metastasis. Most people live weeks to months with that diagnosis. Weeks to months. Cancer coated nerves on his brain and free floated through his cerebral spinal fluid / central nervous system. After intrathecal chemo treatments, and IV chemo treatments ... he hit a wall. We didn't know if he would survive.
He stopped all treatment.
Here's the thing about the roller coaster of life around cancer .... We eat right. Live healthy. Love hard. Breathe fresh clean air. Surround ourselves with love and light. Michael is on oral chemotherapy pills, daily. We try everything. Healing through cancer is like throwing spaghetti on a wall. We do everything in the let's-heal-this-fucker-of-cancer-in-any-way-possible. That kind of heal.
Apparently. That's not enough.
PS. I love Michaels fashion statement in the hospital. Blundstones and hospital gowns are a thing. Right? 🙂
If love could heal, imagine what we could do? I'd like to believe that love has helped the healing, every step of the way. Perhaps that is why he is still here? We solve a lot of problems with LOVE.
Why can't this one be the same?
Apparently. That's not enough.
Last Christmas, it hit again. We were on our #BucketListFucketList road trip in our airstream enjoying presence with our kiddos instead of presents. Michael had such severe back pain, we had to make an emergency trip home. Watching Michael wheelchair bound and flying home was sooooo hard. The knowing that something was looming. Scary. On all levels of scary. Our kids held us through it all. They booked our flights. They packed up our airstream for storage. They got us to the airport and on that plane and to the hospital. Just. Like. That. Their love is palpable. My heart exploded and broke all at once. It explodes with love for them, and heartbreak that some day they may lose their Dad.
Michael had 5 rounds of radiation treatments on a 4 cm tumour on his spine. Together, we gave cancer a smack down. Once again.
Apparently. That's not enough.
This is a tough go. Like, really tough.
This part of the road is getting really hard. For a loooooong time now, Michael has night time twitches. He moves/twitches about 100 times an hour while sleeping. Hugging him at night is like hugging an earthquake. In the past month, he has had bad back pain, facial numbness, numbness in his shoulder, numbness in his feet, an inability to easily lift one arm above his head, headaches, and double vision. He can't see clearly for the first 10 minutes when waking up.
This shit is getting real.
Michaels oncologist (who may be an actual Saint, and we love her) has been taking such great care of him. She immediately ordered a brain MRI and lumbar puncture (to test his cerebral spinal fluid for cancer.)
Unfortunately, it was not the best news. Lymphoma cells are on nerves entering his internal auditory canal, dorsal roots at multiple levels in his cervical spine (neck area) and free-fucking-floating in his cerebral spinal fluid AKA central nervous system <<< which is pretty much the most important part of life itself. When lymphoma cancer cells pass the blood brain barrier it's not fucking good. Pardon my fucking French.
Cancer is like watching heartbreak unfold right in front of you. It's like having a front seat to the most heart wrenching experience. It puts a big fucking lump in my throat to watch it and feel so very hopeless in the ability to stop it in it's tracks. It is an uncontrollable train wreck of emotion. Cancer is where the rubber meets the road in the race of life. To watch Michael fight it, is like watching a champion. It's brave. Warm. Funny. It is deep in the depths of sadness. It's the not knowing what is going to happen next. It's the knowing what's going to happen next. It's a shit storm smack down of gut wrenching pain. It's an ugly cry a million times over. It's walking through the wilderness of grief and happiness... all at once. It's an eye opener. It's devastation. It's gratitude. It's love. It's all that, and all those things... that take your breath away.
I feel gutted. Crushed. Scared. Terrified, actually. Can't eat. Can't sleep. Can't think straight. Terrified.
It's chemotherapy time again
He has been down this road before, and has been fighting the good fight. He will fight it again. Intrathecal chemotherapy is the only way to attempt treatment past the blood brain barrier. He is scheduled for weekly treatments, starting next week... throughout Christmas and the New Year. We will then reevaluate and go from there.
Basically. This all really sucks.
Cancer is horse shit.
And we are scared.
We want to take our fear and turn it into a force for good and start a movement called we CANcer vive.
This dreaded disease takes so much, and we would love love love to find a way to bring some positivity and light to it all. How will we do that? With you. Will you help us?
Let's somehow make this whole experience better. Cancer is in our world, we can't change that. But we can change how we deal with it. How we cope. How we love through it. Lean into it. Together, we are stronger.
Together, we cancer-vive . Maybe, just maybe...together we can find the magical key of getting through it all by sharing, leaning, loving and anticipating the heartache and change. Perhaps we can be kindred spirits in the fight against that undesirable club we call cancer.
Here's our ideas for a We CANcer-vive campaign :
We want to bring some light to someone else's darkness through super fucking cool and feel good items. This page is a small start, but it is a start. You can be a part of the #WeCANcerVive movement here :
Our ideas so far are to have items and merch that empowers those around us....like We CANcer-vive tshirts, hats, cozy throw blankets, essential oil diffusers, candles, digital download art quotes... all the things, anything, everything that it takes to make a patients experience BETTER. We want the experience to be better for their loved ones, friends and family too.
We would also love to find a way to gift cancer patients and their loved ones care packages. Like cancer care kits. A portion of the proceeds would go toward helping a person in need. Maybe people could buy the a kit and donate it to someone in need? Or gift kits to others? Can we do this together, somehow?
This is where you come in. We want to pay it forward in a positive way and we need your help. We would love your input, your ideas... anything ... everything... big or small... it doesn't matter... we are grateful for any and all ideas. Please share in the comments below. xoxo
Maybe. Just Maybe. We can make a positive difference in this world in the fight against cancer. Let's fight it with LOVE and knock that cancer fucker right off its pedestal. Pardon my French.