(This is also the transcript for the podcast Breathing Out Stars — Episode 31)
There is a moon in the evening sky. Around it – many clouds. A storm has just passed. It is stunning. It is, in fact, the reflection of the moon on the clouds that makes it look thus.
It was quite a storm.
It was a few days before my first surgery that I happened to read that you don’t get the transformation unless you go into the Underworld. But we will talk more about that later.
I beg your indulgence as I share this story.
And so it was that as I was wheeled into the operating room for a second surgery — that I recounted this to R, saying…I’m on my way to the Underworld.
To my friends in Italia: I am sorry I didn’t tell you when we were together in June. i am sorry that I didn’t tell you that I had just been diagnosed with melanoma…for the third time.
If only words were the bearer of all manner of magic I would write myself back to strength. But now that I can type again – that is what I am trying to do.
I had standard melanoma surgery, which means a wide excision – a 4.5-inch square of my upper back, and a sentinel node biopsy of my underarm. I went through this same kind of thing – previously — on my leg, in 1998, in 1994. I had thought I was done – a chapter closed.
I thought I knew what to expect. The lesson: fate will surprise you.
It was less than a week after that first surgery, in early July, when I had suddenly unmanageable pain, loss of the use of my left arm, developing fever, that I knew I was in trouble.
With a capital “T”.
In the framework of a hero’s journey, the hero gets a call. A call they ignore and then a call again.
I got a diagnosis. A feeling that my life was changing dramatically. I stepped back from my career of almost four decades. There was actually no great grey wizard rapping at my door to warn me of change — but it felt like there was. To me the message seemed very clear.
So now – less than a week after the first surgery we are at the emergency department. It is packed with covid patients, vomiting, complaining. I am “clearly” not as ill as they all seem to be.
After two hours, I begin to doubt myself. I am imagining that perhaps I am imagining my symptoms. I go home. Yes my incision feels hot. Yes I know I am not ok. But the emergency staff seems to think I am fine.
Now we arrive home. R hands me the thermometer. We are surely going back to the hospital soon, he says. Let’s monitor your temperature all night, he says. By 4 am it’s back to almost 102 degrees Fahrenheit. I’m in so much pain, despite opiates. The dog gets us out of bed, wanting to be walked. By dawn I am sitting on the couch, holding my head, shaking it.
We have to go, I say. I’m in trouble.
We get to the hospital just after 5 am.
They take me in right away this time – they do bloodwork. Results are back very quickly. All blood markers point to severe infection.
As the hours drag on I am not responding to antibiotics. The doctors use big, scary antibiotics – like sledge hammers. They are having no effect.
There are seven IV bags hung above me. All pumping things into my system.
It seems crazy — nothing works.
Now…it’s the middle of that night.
My fever is over 103. I am literally begging the nurse to help me.
My organs are beginning to be affected.
Blood pressure drops to 69/49.
On one level I know what is happening and yet it doesn’t seem real that it is happening.
How could I possibly be septic?
The doctors decide I need emergency surgery. And now I say it. As they wheel my bed down the hall I say to R …I’m on my way into the Underworld.
In surgery they open up my incision.
Three liters of saline and a pulsating pressure-washer is what it takes to debride my wound.
The resident, bless her heart, brags to me about this later in the afternoon…among with other details from my surgery which impressed her bizarre sense of excitement…which I will not share here.
She is oddly proud of what she has observed. At a teaching hospital I am a test case, after all.
She may be proud — but I am — numb and in shock.
It is after the surgery — after more time a whole other day — that my body begins to respond to antibiotics. That my organs begin to respond. I am climbing back.
It is not until after — that we understand the full extent of what had happened.
Necrotizing fasciitis, they say.
In the hero’s journey I have faced the dragon.
But I still have to pick my way back through the mountains to return home.
To return to myself.
Spoiler alert: I am far from myself.
They install on my upper back a wound vacuum. Negative pressure therapy to encourage large wounds to heal. They tell me I will be attached to the wound vac for almost two months. I try to absorb this information. I start to cry.
So now I am going to be a cyborg, I think.
If you know the cultural reference, you will understand when I say: “resistance is futile”.
Now I am home – it is three weeks later and I am three weeks along in my wound vac treatment. A wound nurse checks and changes the vacuum dressing three times a week.
So let’s check in on our little hero. She battled the monsters. She climbed out of the belly of the whale, escaped the flying monkeys.
How is she doing?
Well – she is referring to herself in the third person.
She is getting a little stronger every day.
Bouncing back is a whole thing, apparently.
Technically the storm has passed but the moon still has some clouds. The edges of the clouds are so shiny – reflected by the moon.
So there is definitely that. A little beauty — I’ll take it.
When an appliance or electronic device doesn’t work well we unplug it.
I thought I was working fine but Someone thought I needed rebooting.
And now I am just waiting for all systems to start working again.
If you know about ‘denouement’, the falling action, the action that happens after the climax, after the hero battles the dragon – then you will understand that I am in the denouement. Denouement means literally ‘untying the knots’. If you know me personally, you know that I am one who unties knots.
So it is with great joy that I recognize I am in the part of the narrative which untangles.
Perhaps my story will help you if sudden change has come into your life – change you neither expected nor wanted – and the only way forward is forward.
Because there is no other choice. There literally is no other choice than to adjust.
As I said at the beginning — you don’t get the transformation without a journey to the Underworld.
I am lucky to have returned. I am fortunate to have the opportunity to untie the knots.
Now I wait and process everything and watch the direction of the winds.
And that is all.
I am still here to tell the tale.
Oh my good Lord Leslie! Sending tons of love.
Sending love back!
Teary for your suffering, your survival, your brilliance. Knowing all at once I wish you never had to endure it and also that meaning is already coming forth from it – that you will keep turning and turning. Sending you love and more love and extremely mediocre Challah (let me joke about this, at least) xoxoxo
Joke about the challah all you want. I was living on emotional-support popsicles. (Let me joke about this, at least)
Moving piece, Leslie. Sending love and healing prayers.
Firstly: Your tag line should read ‘I write GOOD stuff’. (Sorry if I haven’t told you before how much I enjoy and admire your great skill. Thank you for sharing.)
I have had this tab open since you published: your story DID help me as sudden change –neither expected nor wanted – had just decimated my life in the shape of my fabulous husband suddenly dying of an inoperable brain tumour. The same rare tumour which took my lovely sister 6 years ago. And you are right, the only way forward is forward, but damn it’s hard.
I hope the intervening weeks have done wonders in healing your wounds; plural, because your experience will also have left other scars, some of which will possibly serve, in a carpe diem fashion.
I barely have words to respond to your kindness…and generosity in light of your own grief. May you be buoyed in your journey through these dark times.
Leslie, I just read your epistle. This will tell you that I, too, am riding the wave of life. I was shocked (as you know I am a retired nurse. I do not shock easily.) to think of what you have suffered. I know that you do not care for the adjective suffered but this is what you did. I have cared for many very ill people and very few have gone through what you have. You are a survivor and a believer in the strength and resiliency of the human spirit. I am so sorry that my support and prayers come so late in your journey. I wish you every good thing. We are about to begin a new year and this will be a new beginning with our prayers and best wishes for you. Your strength and courage show others that there is much to rejoice in in our world. You are a beacon in the dark. Love, Barb
Barb…I needed this. Bless you.