B is for "Bring it on..."
Treatment begins next week on Celestial Trial Arm B: a combination of Venetoclax & Obinutuzumab.
The verdict has come in and I have been selected for Arm B of the CLL Celestial Trial. Although I felt like Arm A had so many more benefits for me and our family, Arm B still offers an incredible treatment opportunity that I would not have had free access to otherwise. The combination of Venetoclax and Obinutuzumab (try saying that fast) have had amazingly effective results and are tried and true, all of which is good news.
Let me take you back to earlier this morning and how the day has played out…
While waiting for the call, I took time to sit on the beach and observe nature. The rippling, dancing silver-sheen waves, the clouds that turned from pillowed quilts to fine feathers in the blue sky, the bright and cheerful bird call, the glistening grains of sand, to numerous to count and I felt blessed.
These song lyrics played over in my head…
“I don’t know the end or tomorrow’s story but I have found the one who gives me rest. And I will make my bed in His promises, for He holds true when nothing’s left."
“Time” by John Lucas
The call came, later than expected, and as I waited for the nurse to announce my future, I sat, a block of charcoal in hand, etching the words “I have found the one who gives me rest” into the sun-dried tree log I was sitting on.
She said “Arm B”. I wrote “rest.”
I’ll be honest, the news wasn’t what my heart was hoping for. But I have a hope that is beyond my own knowledge and desires. So I had a big cry (good grief is an important part of this journey) and talked over my disappointment and fears with God. Then, I hauled myself up and made the hard choice to bounce back, because I want to model ‘faith beyond feelings’ to my children.
And I can do this authentically, no shutting down, avoidance behavior or “faking it until I make it”, because of what I observed on the beach this morning. Glistening sand comes from the breaking down of silica, rock and quartz. Time, weathering, a hard journey, to end up there in such a delightful form at our feet. Waves rise up from murky cool depths, crashing to the shore, while sunlight playfully dances on their surface as they thunder down. The charcoal in my hand could be turned into a diamond, in the “right” conditions - under immense heat and pressure. I can’t shy away from this profound truth marked out all around; the earth itself sings of it.
There is no light without the dark. Authentic beauty is rarely found without pain, weathering, and depth. Strength is not found without an uphill climb. Resilience builds in response to resistance. Faith is born in fire.
The next few weeks and months will certainly be challenging to navigate for our family. I have been deemed “high risk” due to my high tumor burden and next week I’ll be in hospital for two nights as they monitor the risk of reactions - both an immune reaction (from the immunotherapy; the first drug of a two drug combo) & the risk of TLS due to the incredibly fast break down of cancer cells. Each week, for the next two months, I’ll be in for infusions (& possible hospital stays depending on my reaction). There aren’t just the reaction risks to worry about; there’s the emotional strain and logistical juggle that puts on Anton and the boys as well. Pressure is found here. Risk. Weathering. Being stretched and broken down.
And I’m so thankful for all the care and support that is being offered. We’re not doing this alone or in isolation. We are blessed by family and friends all leaning in and walking this road with us. My children’s hope and faith astounds me. Beauty is found here. Love. Kindness. Gentleness.
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This is the dance of life; it’s wild & it’s gorgeous! And so I dance!
Last weekend Anton, I and the boys were at WOMAD (World of Music and Dance) to celebrate Anton’s birthday. We danced, jumped and twirled until our leg ached and our mouths yawned. It was a very special occasion, and it shone all the brighter for me, knowing what was on our horizon. These moments are precious and we treasure them all the more, when we don’t take them for granted.
I look forward to hanging in hospital next week and sharing with you some more reflections from the journey. I do this for a few reasons:
It’s a super healthy way for me to process my own journey.
I want to model courage, love and legacy to my children and these entries are a record of that for them.
It’s wonderful to be able to share the journey with you, knowing, even though we live in a remote little spot, we’re not alone, that you walk beside us.
I want for these blogs to be there for others who find themselves in hard times, be it facing cancer, dealing with death, trauma, or any other pressure cooker situation. May these notes resonate with your heart, encourage you, surround you with love and hope and inspire you to live for legacy, no matter what. (& If you know of people who might find these blogs helpful, please feel free to share it with them)
I’m a bit lost for words when I read yours, lovely lady. I was speaking to your mum (and dad) 💖at Christmas - and we spoke of the connection I’ve often felt with your words and ideas from afar. These days, I take myself to a quiet place in a beautiful nearby park, surrounded by the most gorgeous trees, to sit with your words and send you my prayers. You and your family are in my thoughts and heart. I wish I were a little nearer and able to offer the practical stuff, but perhaps there is something in the fact that prayers are coming from afar - perhaps when everyone else is sleeping or you are awake with thoughts, think of them coming your way. And your words are inspiring and helpful beyond measure. I’ve shared this with someone I know here (NH lymphoma) who is in the treatment cycle, also mum to two small children. Maybe she will see this comment. I hope it helps. You both have a place in my heart ❤️. Bring it on …