Well, here goes my first attempt at blogging/writing/documentation.
I am doing this for the love of my life, for Den. All my effort, energy, support and unwavering love is directed to my incredible husband as he does the hard work of attempting to beat an almost unbeatable cancer: stage 4 Pulmonary Artery Intimal Sarcoma.
For those of you who know us, this will hopefully pull you closer to us as we embark on our collective Cancer-fighting journey.
For those of you who are new to our family’s story, my hope is that this can be a source of inspiration and/or support and you will join us on our battle.
Our first miracle happened on Thanksgiving. After a hike on our favourite trail to the top of Mt Doug, Den felt a bit more breathless than usual. We thought nothing of it until later that night at dinner with the family, when he went to move a table and felt the same breathlessness. Instinct kicked in and, not knowing why exactly, we headed off to the hospital.
This chance visit and a newly donated CT machine uncovered an enormous mass growing in Den’s right pulmonary artery, leaving only 1mm of space for blood to flow through the heart and into the lungs. We’re talking 4 litres of blood a second, trying to push through the tiniest of spaces.
I will tell you this—I understand now that when they treat you really well in any hospital, this is not a positive thing. We were almost immediately given a room with a view and a couch for me to sleep on. Then, on Oct 10th, we were given the royal treatment and ushered into what I call “the bad news room.”
We were told Den’s mass was a tumour— they thought probably a sarcoma as another tumour had metastasized to his lung. It was stated that any attempt to do anything about it, even to collect tissue samples, would lead to instant cardiac arrest and they wouldn’t have the people or materials to save him. How Den was even alive to hear this news, no one was sure.
We were told the surgery to remove Den’s tumour and buy him more time would likely lead to him dying on the table or spending the last months he had left recovering and unable to live comfortably as we waited for the tumour to grow back. They also thought it had most likely spread into the rest of the heart. The only way surgery was possible was with a donor transplant. It meant possibly flying across the country and, more importantly, we would need a surgeon to sign on for this complicated procedure. At that point things weren’t looking very good, so none were willing. Den was put in palliative care and was directed to say goodbye to our kids, family and friends.
The team at the hospital allowed me to sleep next to Den and we would lay awake at night trying to wrap our heads around the concept of not growing old together after building such a beautiful life together for the last 13 years. Not having grandchildren. Not traveling. Not being able to spend more time in Mahone Bay where Den was raised. Not being able to drive through Italy and France once the kids had flown the coop and we were finally free to roam as we pleased.
It was inconceivable. Unbelievable. Unbearable. We experienced a depth of grief and loss we didn’t know possible.
Over those next few days, we also experienced profound beauty. We witnessed our children showing up with incredible courage, vulnerability and with the particular kind of strength it takes to completely give yourself over to loss and accept a new reality. We were held by our new hospital family of doctors and nurses that cared for us and worked us through this utterly unbelievable thing. We saw to the beautiful core of our family, friends, and community and were the recipients of their utter magnificence and generosity of heart. We read letters and cards and took calls and visits and with that, our lives were forever changed.
We started to live in that beauty—in that pure-love state. It was the first thing we saw when we woke up in the morning. We bathed in it throughout the day and dreamt about it together in the evenings. It acted like a laser light beam, cutting through the darkness. Light, objects, space looked different to us. People felt differently, better, and we started to understand that this pure-love state was the antidote to our fear-poison.
So we decided on the morning of October 13th that we would from now on only do the next most beautiful thing. A bucket list was made for the remaining time we had together and the first thing on the list was to get married. Why not do it that very day?
We had been talking about it for years but when you have 4 kids, are self-employed and your once-small hometown is now a destination city, it is hard to carve out the time and money for such a thing. We wanted natural, intimate, unique but where, when and with who?
We learned that there was a mandala-shaped zen garden, under a grove of Magnolia trees at the back of the hospital, just outside the doors. It was in a private, historical bricked-in courtyard and it was perfect.
After about 100 phone calls and quick errands about town, we had a minister, the license, the dress, the rings and our friends and family ready to meet in the late afternoon to watch us tie the knot.
When everyone had gathered and it was time to get married, the doctor and nurse monitored Den closely as at this point it was an anything-can-happen sort of scenario. The system they had put in place allowed for Den to attend his own wedding but still survive a cardiac arrest if one occurred. In the background of most of our wedding photos you can see a nurse standing behind a mysterious looking table draped in white. It looks a little like a wedding cake but it’s not. Underneath that white cloth is a crash cart.
Then, moments before we were to get started, our doctor bent over Den in his wheelchair to announce his wedding gift to us. In the background, working with a team of others, this doctor had been pulling together the second miracle in our story. Against the odds, the lead surgeon at our hospital down the road, a woman who had been leading cardiac surgery before they allowed women to perform surgeries, had agreed. Her nickname among her colleagues, we later came to find out, is the ‘Original Gangster’. She brought in another surgeon who would be her partner in this life-extending surgery Den so desperately needed as they suspected a transplant would be needed and this type of surgery had not been performed before. She said yes because after decades of successful surgeries preformed, she knew she could.
So, the team of surgeons, doctors, nurses and staff had decided to rally around us and what had originally been a firm “no,” was now, miraculously, a “yes,” After two years of being beaten up by the pandemic, it seemed like they needed a win almost as much as we did.
The local news heard about it and did a small piece about the ceremony, you can see that here: https://vancouverisland.ctvnews.ca/victoria-couple-wed-in-hospital-after-devastating-diagnosis-1.6117524
On Oct 20th, Den went in for his open-heart surgery and after 7.5 hours, with 15 doctors watching and documenting, the talented surgical team removed the fist-sized primary sarcoma as well as the artery itself. They transplanted a new donor pulmonary artery, trunk and valve and patched the surrounding areas successfully. It was only at this point that they finally had the opportunity to take tissue samples. They sent this off for sequencing so we could get to the bottom of what this thing really is.
If you are into this sort of thing – you can see a photo of the tumour in the surgeon’s hand here (link)
What I have also learned about hearts, transplants and complex surgeries is that there is not a proper descriptor for what happens after it’s done. Nervous is not a good enough word to describe the feeling of having a new artery in your heart, wondering if it will take or if it blow out. Anxiety isn’t an adequate word either. 4 liters of blood a second is a lot of blood to process, the new and sustained pressure of every single heart beat threatening all of the doctors’ hard work. They dedicated a nurse to watch Den every moment of the day for a solid three days, waiting for even the smallest sign of distress. I have such a newfound admiration and respect for the nurses, doctors and care staff that we look to, to mend us when we break.
Those days following the surgery had me pacing the halls, waiting for the brief times I could see Den. When I did get to be with him, he looked more cyborg than human man, with tubes coming out of every conceivable place, machines pumping and whirring, and my man, high on Ketamine, whispering about sandwich clouds and card game conspiracies. They definitely gave him a lot of the good stuff.
Eventually, the new artery did take and on Oct 25th, they sent Den home with extra-strength Tylenol, baby aspirin and no bandages. After witnessing the hyper-attentive care of the last 15 days, how they were allowing me to take him home to care for him myself with some mediocre pain relief was beyond me. I have always been more of an Advil girl myself and will admit I had doubts about the efficacy of Tylenol. It’s what I gave the kids when they were sick, not a man that has just been sawn in half!
I am happy to report that after five weeks of two pills every four hours, I will never scoff at Tylenol again.
On November 15th, we met with our new Oncologist to finally understand what we’re up against next with the lung. In this new bad-news room we found out that Den has one of the rarest forms of cancer— a Pulmonary Artery Intimal Sarcoma with only about 100 cases studied and with not a lot of options for treatment. The suggested cocktail of chemotherapy is the most aggressive out there, is specifically toxic to the heart, and may not touch the tumour in his lung at all. We were told the small amount of statistics show only 15% of recipients had experienced any chance of the chemo working. And we were told that if we didn’t do the chemo, our window of time would be short.
So, we’re going for a third miracle.
This next part is big and scary and will ask a lot from us, our family and our friends. We are setting out to create order from this chaos. We have started researching all the things. We have started a routine of diet and exercise. We are making strides to nourish our minds, prepare our bodies and mend our hearts.
For those who know Den, this won’t be a surprise BUT he has the most extraordinary mind and has taken to coping with this diagnosis through in-depth research, digesting medical publications and science findings – everything under the sun that could help. He’s turned into a medical encyclopedia and I have learned new heights of my adoration and love for him. He’s not taking this lying down, that is for certain.
Meanwhile I have been coping in other ways. I have been establishing the command centre, implementing the framework and network that is needed to see us through because I have learned it is a big job to be your own advocate in this health care system. It is like a complicated clock works with many different gears turning and you have to constantly place yourself at the centre to make sure the different parts are working together as efficiently as possible.
This week I start my attempt to pick up some of the pieces of our life that were dropped. I am learning to be patient and understanding with myself because who can possibly know this battle until you’re in it? I have to keep reminding myself that there is no preparing for this. This week I will focus on managing Den’s stress and pain as we start reaching out and meeting with all of the people we have pulled in to help. Like, all of them. I have decided to document Den’s fight every step of the way, detailing our approach to marry Western medicine and Metabolic approaches to save his mind and body from the impact of the most aggressive chemo and radiation. We will be reaching out to top researchers and doctors all over the damned place and weaving a plan together that is intuitive and vetted by our team.
This account feel like cliff notes but truthfully, it feels like that in my mind—like cliff notes of a fragmented, stressful, beautiful, terrifying and inspiring time.
This is a gift to my husband, so that when it comes time he can watch his journey from our perspective. A story of a beautiful man, living in a state of miracle as we work to beat an almost unbeatable cancer.
Come, join us on our journey.
4 thoughts on “So it begins.”
Inspiring – full of courage, strength, love, hope and healing. The village is standing by to help, support and lift you and Den and those you hold dear in any way we can.
Cala, this was so beautifully written, I think you have a back up career on your doorstep. Big hugs to all of you. I am here for you… for anything💗
Thank you for being vulnerable, for showing up with such an open heart. This is a calling, the battle of a lifetime, and now all that you are separately and together, has coalesced into this moment. We are here, holding you both. So much love.
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this was beautifully written and had me in tears more than a few times because of the similarities of our situations, I implore you to keep writing. its certainly helped me cope with a lot of the emotions. I will continue to follow your story and hope that we can get in touch with each other to share more. it took me almost six months post diagnosis to write my first post but it inspired me to continue writing as I rode the waves of uncertainty. heres the link if you’re interested in reading my long winded story of how I got diagnosed with stage four intimal sarcoma. http://theywentthere.com/2022/06/04/the-happiest-years-of-my-life/
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