And I'm free falling....

V&O treatment has begun & it's been a ride! A smooth take-off, in-flight turbulence, & the thrill of experiencing my lymphocyte count rapidly decrease after only one infusion cycle. Celebration time.

Last week, I started Obinutuzumab (“Obi” for ease) infusions as my first line drug in Celestial Trial’s Arm B, Venetoclax and Obinutuzumab one year combo.

And wow, what a week it’s been! Wild and wonderful. Exhausting and exhilarating. A flight filled with a myriad of emotions and experiences.

Smooth Take-off

I’m not a good flyer. Anticipation starts to build from the moment I book a flight, and steadily grows as the days count down to take-off. The build-up to my first treatment was similar. I was excited about the destination, and apprehensive about the process.

Treatment started with two days of infusions and overnight hospital stays for monitoring. In my preparation and packing, I was solely focused on getting through the infusions. My high risk status for immune reactions or a serious kidney issues (TLS) from the breakdown of cancer waste products, as well as family logistics had filled up every compartment of free space in my mental and emotional capacity. In my mind, there was nothing beyond those few hours in the cancer clinic, strapped into my seat, no escape, connected to the drip that was determining my life.

Photo by Josue Isai Ramos Figueroa on Unsplash

Amazingly and gratefully, all went super smoothly - no adverse reaction events, just a “boring” two day’s of sitting in a comfy lazy-boy (business class for us cancer crew) with great company, lovely food, a wonderfully attentive nurse, and one too many toilet trips, awkwardly trying to navigate my drip on wheels past all the other people on the voyage. Drinking over 8L of water (unquenchable thirst response) and dripping in electrolytes at a high rate, is recommended but has it’s downsides!

Turbulence

What caught me out was the turbulence once we were underway. I hate turbulence on a plane. And this felt similar - that feeling of being trapped in a body, doing things without my permission, with no way to escape. Steroid induced hunger (yes midnight snacks were a thing), completely frustrating insomnia following the infusions and then extreme bed ridden fatigue lasting for days, as well as agitation, emotional lows and the general down as the meds and cancer left my system. I went in under-prepared this time, and I had before, when I had back surgery a few years ago. I was so focused on just getting through the procedure, I did not really commute the recovery and rehab that would follow and got taken completely by surprise by how hard it was. Detoxing drugs is not fun. Ever.

When we board a plane, we get the safety card and the air hostess briefing, outlining the very high risk stakes… oxygen masks, water landings, a fire during flight, crashes landings. All the life and death stuff we most want to avoid. But on long haul flights, people mostly experience other types of discomforts, not those highlighted in red and yellow. There’s travel sickness and nausea, back and leg pain, snoring neighbors, difficulty sleeping, eating at weird times, the conundrum of how many times it’s appropriate to visit the loo in 10hrs. Throw some young kids or a baby in mix and the games really begin! Not to mention the eye spinning, brain numbing jetlag on arrival.

But we anticipate these things, and take steps to mitigate and care for ourselves. And that’s what I’ve had to learn this week. I’m on a long haul flight. Take short gentle walks, stretch my body kindly, keep hydrated, use ear plugs when necessary, sleep when I can, allow other people to serve the food and do the dishes, let the kids watch one too many movies. All simple and practical steps to nurture my needs as my body goes through this treatment process.

Maybe we’ve only got capacity for so much at a time, a bag limit per se, but as I lie in bed at 4.30 this morning, typing this, I’m a lot more comfortable with the insomnia after infusion round 2 today, because I was anticipating it. I know it will pass, and so instead of fighting or fearing it, I’m better able to embrace it. Next time, I’m facing a situation like this, with big red risks, I also want to invest more time and energy considering, planning and packing for what’s not in the safety briefing, but will make the journey more comfortable along the way.

Free-Fall Landing

Another reason, I’m also super ok with my present wired-awake state is, because, this morning, I received my first weeks blood results. And I’m so thrilled, I’m half-pie wondering if it is steroid sleep issues, or just being on a happy high.

In my pre-trial blood test a week ago, my lymphocyte count was up around 330,000 (normal range is 1,000 - 4,800). It had steadily and steeply climbed that high over the last 18months (unusual for my cancer which is usually slower and more indolent). I’m not good with heights at the best of times, I fear flying and get dizzy on a ladder, so having a sky rocking blood count, somewhere up in the stratosphere, was pushing my comfort levels!

Photo by Filipe Dos Santos Mendes on Unsplash

And then today, only one week from that first litre of “Obi”, I’ve free fallen all the way back down to a lymphocyte count of 7,800 (& a WBC 5,000). Wow, what jump! I would never sky dive or bungy jump, but I have found this rapid reduction in altitude absolutely exhilarating. 330k to 7.8k in just 7 days! No wonder I’ve been knackered. My bodies been working hard behind the scenes.

How absolutely cool and remarkable is that? I know not all the cancer is gone from my body, we need the treatment to hunt out the many sneaky little cells hiding deep in my nodes and peculating in my blood marrow. But my life blood, the stuff flowing around my body, has a greatly reduced cancer burden. Healing has kicked off with a leap. Cancer has been assaulted in a good way.

Photo by Quino Al on Unsplash

I’m so thankful for Jesus, this trial treatment and all the people in between. I didn’t jump without a parachute. My parachute was woven together with the skills, knowledge and expertise of medical experts I’ll never met, other cancer patients who trialed these drugs before me, my specialist care team, my family and friends close to home and close at heart, my faith warriors who carry me in their prayers, my God who I’m tethered to, always.

Courage, Love and Legacy, points to ponder…

I have neglected to include this little closure to my posts recently and I want to reintroduce it today, because this is the part about legacy. This section is about these blogs providing you the opportunity to glean from my journey and invite it to resonate with yours. For you to go deep into your own heart and find hope and healing where you need it. So please take a moment to reflect on your own life for a moment…

• What victory or smooth sailing moment, small or large, can you celebrate today?

• What long-haul challenges are you facing, and how can you create rhythms and habits to care for and nurture your needs (physical, emotional, spiritual) along the way?

• What and who is your parachute woven together with? Who has got you covered? Who would you like to you reach out to today, to express your gratitude for their love in your life?

PS - if you’ve found this blog impactful, insightful or helpful, please feel free to share it with others who you know might need it today.

PPS - I’m now anticipating an emotional and physical low in the next 24hrs as the drugs vacate my system… I might not be up for phone calls but if you’d like to send virtual hugs and encouragement, that always help low ebbs. xx