Gifted Time

Today marked a significant day for me...

On the 26th of March 2024, with a skyrocketing white blood cell count, I started a clinical trial to treat my CLL. Our hopes were pinned on nine infusions of Obinutuzumab and the daily doses of Venetoclax that followed. (I trust you’ve been enjoying my video diaries of that journey over the last few months)

Yesterday, at 9.32am, sitting outside a shopping center in my car, I hurridly ate my tasty takeaway museli and unceremoniously swallowed my last four pills (because I thought I had another days dose to go!).

Today, after a phone call from my nurse informing me my treatment had finished, no medicine accompanied my breakfast.

Last year, the beginning of my treatment was filled with apprehension, of being overwhelmed by medical risks and procedures, tests and new terminology. The completion of my treatment was heralded by no more than the clatter of my teaspoon in my empty museli bowl.

And yet, despite such a small, simple shift in daily routine, this feels so significant. Monumental even.

I have crossed an invisible threshold from being a cancer patient to being cancer free. I have also stepped from time on hold to gifted time.

Today is a gift, because without treatment, I’m not sure I would have survived another year. Tomorrow is a gift. Next month is a gift. So is next year. It’s phenomenal really. I’m in awe.

Today, I unwrapped this indescribly precious present. I breathed it in deeply. And my heart burst with gratitude.

I am grateful to God, my protector, my life blood, my hope and healer. I am grateful to all those who have lovingly walked beside me, every day or just for a minute. I’m thankful for both the dedicated and intermittent prayers of all those who have believed for my healing and health. I am grateful that my heart continues to beat. For the life giving breath I deeply inhale. For still being here to love and laugh and live.

Tomorrow, I will wake to a dawn full of possibility and potential. For the first time in years, I’m excited about what the future might hold. It has not been easy having plans on pause for so long. I have so many hopes and dreams. Sometimes I don’t know what to focus on first. What I do know is that my DNA demands a purpose driven life. Every fibre of my being wants to squeeze the most out of this gifted time I’ve been blessed with.

Photo by Sandra Seitamaa on Unsplash

Truth be told, mixed in with this eager anticipation, there yet lingers an underlying hesitancy. Although treatment-free, I’m still on this trial for the next 5 years, which means every three months I’ll be back for monitoring - blood tests, specialist appointments, CT scans and possible future bone marrow biospys. It means I’m going to be really well looked after (yay!) and also means that my life will be strung out into 3-monthly intervals, always facing the nagging uncertainty of what my blood tests might show since, medically, the leukemia is expected to return at some stage, be it one year or ten (let’s pray it’s ten).

But knowing this motivates me all the more to treasure the time I do have. I don’t sit with a comfortable confidence of continued health and reaching old age. I cannot afford the luxury of postponing hopes and dreams until a later date. I live for the present, pursuing and cherishing moments that matter. And I think this perspective is a gift: not taking time for granted, but embracing the fragility of it and finding beauty there. By nature we humans are both incredibly strong, yet simultaneously vulnerable. In this tension, between our perservering endurance and our fleeting impermanence, hopes, dreams and aspirations can be fully ignited. When we no longer slip into complacency but embrace the precarious position of living life permanently on the edge of eternity. Here faith, hope and love abound.

And so with great anticipation, this chapter known as “Treatement Trial V&O” is closed and I begin a new season entitled “Gifted Time.” Here’s to unwrapping it’s layers with you.

With Courage, Love and Legacy

Kylie