Six Months Later, I’m Still Here

Some reflecting and rejoicing

Photo by Ray Hennessy/Unsplash

This past Friday marked six months since I received my diagnosis of incurable cancer. The next day I started radiotherapy to try to shrink the tumor that was compressing my spinal cord. Within a week, I could no longer walk and then I couldn’t use my arms. We didn’t know whether there was an accessible biopsy site; we didn’t know whether I would have any improvement from the effects of spinal cord damage; we didn’t know whether any cancer treatment would be an option; and there were so many more unknowns.

Six months later, I’ve had a successful biopsy and have been able to start treatment. I still can’t stand or sit in most chairs for very long, but the use of my hands and arms is mostly back to normal. I can walk-hobble with a crutch.

And best of all, I’m still here.

This milestone was celebrated on Friday across much of the U.K. with fireworks.* The window in our entry room looks out over the Anstruther harbor, and one considerable joy of our house is being able to sit (inside! On comfortable seating!) and watch what feels like our own personal fireworks display in the sky over the harbor and the sea.

On Friday, as I sat with Dave and our two dogs and a glass of wine and watched the color and sparkle explode against the darkness, it felt like external visualizations of the eruptions of gratitude that I feel to be alive and present for this day. Everything is not perfect—nor will it be. All our questions are not answered—nor are they likely to be. But joy does not depend on perfection or knowledge. Sometimes joy is the appreciation of sitting with the person you love on your falling-apart couch while you watch fireworks, and the awareness that you had no guarantee of this moment six months ago but you are so thankful to be here for it.

*OK, technically the fireworks were to celebrate Bonfire Night, aka Guy Fawkes Day, aka “Remember, remember, the fifth of November!” I think my British compatriots will forgive me for a slightly more selfish interpretation of the fireworks this year.  

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Speaking of Treatment . . .

I’m going to present the treatment update like the good Southern girl I am: You take the bad news and wrap it in two pieces of good news, kind of like wedging livermush between two slices of artisanal sourdough bread.

• Top Slice of Sourdough: Dr Eeyore sent me a letter this week to say that my tumor markers are continuing to go down! This is very encouraging and seems to indicate that the treatment is continuing to outwit the tumors.

• The Livermush: You might remember that I said we might be able to move to a more predictable treatment schedule that would require only a monthly trip up to Ninewells. Well . . . that has not worked out as planned. My white blood count and neutrophils have stubbornly refused to cooperate and rebound to the levels that we need. This past week, they had inched up a fraction, but still not enough for me to resume the targeted therapy meds. I’m supposed to go back this coming week, for the third week in a row.

• Bonus Fresh Tomato!: A shout-out to Kevin, the Tea Trolley Volunteer, and to Marion, my Chemo Day Unit Nurse, who have made these visits to Ninewells more pleasant than they otherwise would be. And thank you to Lindy for driving me back and forth for (in my opinion, as I remain not a morning person) ridiculously early morning appointments, and to Maggie’s Centre for providing a beautiful place for Lindy to wait while I get the results of my blood tests.

• Bottom Slice of Sourdough: I’ve had two neuro rehab sessions now, with daily exercises to do at home, and I am really encouraged by some bits of progress. My physiotherapist has been committed to pushing for as much progress as we can get in the next six months, trying to make the most of the window for neuroplasticity.

Prayer Notes

If you were a Sunday school kid a few decades ago and learned the song, “The wise man built his house upon the rock,” then you can have a helpful tune for the prayer notes this week:

Tumor markers down and white blood count up / Tumor markers down and white blood count up / Tumor markers down and white blood count up / And then improvements in rehab!  

I didn’t know that word of the Happy Yellow Shoes had reached the Jolie-Pitt clan, but I’m sure that must be why Shiloh is wearing them on the red carpet. Thank you, Shiloh! (Thanks to Amy Frank for spotting this photo!)

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Alive and Awake

My song on repeat this week is by 90s-era Christian industrial band Mortal. In case awesome loud 90s-era industrial music isn’t your flavor of jam, I’m also going to include the lyrics here. (Although you’ll miss all the great samples, many of which are from the 1984 film Dune!)

We walk the walls in this freak of flesh
Along the twists of our visceral mesh
Against the powerflow of motionless flood
It's an experience of the flesh and blood

I face the weight of this gravity
I face the beauty in the things I can't see
I face the weakness that has rendered me strong
I face the fate of my existence head on

Ready to bleed
Ready to feel
Ready to love
Without fear

I, I'm alive, am alive, I'm alive and awake!

I pray for wisdom in the days of my youth
I pray for courage in the presence of truth
I pray for grace at each approach of the sun
I pray for peace and for the Kingdom to come

I walk the world in this vessel of flesh
Inside the twists of this visceral mesh
Caught in the powerflow of motionless flood
It's an experience of the flesh and the blood

For all that lives and dies
Entails a sacrifice of love
Though the earth, the surf, the skies
Are gilded with good-byes
Be sure—God is in control

And when the dead leaves fall
For time will fail us all
Never fail to remember
The One in whom we move and breathe
And have our being
Is the God who's in control!

How do we die?
How do we sleep?
When we're ready to be human
Without fear

[Mortal – Alive and Awake]