The crumpled ocean is.. no boat trip
These two simple lines from Frightened Rabbit’s “The Wrestle” were the first words written on this blog, 3 and a half months ago.
“The Wrestle”- as it’s writer, Scott Hutchison would later describe it- is about “either wrestling a shark or fucking someone.” The lyrics cleverly comparing the vulnerabilities and insecurities of sex with someone who intimidates you to wrestling a shark.
My inclusion of those opening lyrics as a way to kick off this blog was deliberate. Not because it’s about sex, but because as you look deeper into each verse, you quickly realize that this song is about coming to terms with any struggle that strips you down to your naked vulnerabilities; and which can feel too powerful to bear:
The crumpled ocean is no boat trip/ The dark waters stole my clothing
The shape stirs beneath me/ A pulse pounds along bloodstreams
The first bite marks the beginning of
The clothe-less wrestle with the clothe-less animal
When I wake up on the boat in my first blog post, I find myself in the hospital with a tumor. My first surgery, my first 12 days as a hospital patient are the first bite of cancer, and the biopsy report and PET scan are the dark shades of what’s to come.
This is the test I left land for/ To grip flesh and pull muscle in
The vice clinch of the struggle/ I can’t give in to the weight of
I’ve already left land and entered uncharted territory. The sea is endlessly rough. It knocks me side to side. But my fight is still in me. I can’t afford to give in and let the struggle take me over.
But in the past two weeks alone I’ve hit a hurricane. The first storms woke me from calm seas and left me once again heaving over the sides of the rails. Then, a brief calm, a brief hope. I assembled the crew and thought I had things under control. But the storm picked up again.
My enemy, please stay close to me/ I’ve no breath left, you cold breath thief
The words from my first blog post come back to me, truer than ever:
I can’t breathe. My head is spinning. How the fuck did I get here again?
Lesson #2 about Cancer. You don’t find about everything right away. You wait for an appointment. You wait for a scan. It’s possible to be three months into a diagnosis and STILL not know the full extent of your initial diagnosis.
It took a full 6 full months, several misleading scans and finally a laparoscopy to finally confirm existing peritoneal disease.
Lesson #3 about Cancer. You pass many islands on this journey. Hope and despair are only as far as the next scan, the next doctor’s visit
I’ve passed more islands of hope, only to discover that the boat was never meant to stop there:
- My liver tumors shrink with chemo, and my surgeons tell me that I’m resectable.
- My peritoneal MRI comes back clean, indicating no extensive peritoneal spread.
- I go in for a pre-surgery laparoscopy and they DO find extensive peritoneal disease and call off all surgery despite having a liver surgeon, HIPEC surgeon and colon surgeon all on-call, presumably to address this very contingency.
- I fly out to Baltimore to meet with a surgeon known to take on the challenge.. and he does. But then begins to dial it back within hours after speaking to my first surgeon. He now wants another MRI; another laparoscopy to decide whether to take me on.
Lesson #1 from my first post was that you can’t always count on doctors to tell you the whole truth, especially when the news is bad. Why did my liver surgeon have two other specialists ready to operate if they found something on the laparoscopy, and then back out completely instead of using them? Why didn’t he tell me, at any point, that no surgery- no resection or HIPEC at all was a possible outcome?
I can now add a lesson #4 about cancer: Surgeons have protocols to help them determine who is worth saving and who isn’t. They prefer to call them risk-benefit trade-offs. Once you have metastases to more than one area, all that you hear from surgeons is that “there would be no benefit” to surgically treating. Two weeks ago, I was resectable and was up to between a 40-45% chance of making it to the 5-year mark. If they don’t do HIPEC and don’t resect or operate on my liver I am down to about a 6% chance of making it that long. 6%.
If my surgeon’s life was down to a 94% chance of dying soon without taking this risk, I’m guessing that he would take it. But I digress..
These fierce, tumultuous seas are laughing at me and reminding me once more that I’m not in charge. I’ve never been in charge.
This cancer is in charge. And the establishments and protocols surrounding who they will operate on to save and who they won’t are too powerful.
The last gasp from a burst lung/ The fight fathers, the weak son
The last taste of salt in my mouth/ My skin breaks with no sound
I’ve done what I can, but I feel weak and helpless. This is my last gasp before getting sent back to see how long systemic chemo can keep the bully from taking me over and killing me.
I’m torn limb from limb/ There is bone, there is gristle, and spit
In the clothe-less wrestle/ The clothe-less animal
In these graphic last lines, I see my future. My best case is a surgery that will remove/resect several organs (part of my bowels, uterus, etc. before washing me out with heated chemo). My worst case is rounds and rounds of chemotherapy and if I’m lucky- trials that will wrack my body and weaken it.
I wish that I could be more hopeful. But this chapter is a dark one. I have to weather a few more weeks of uncertainty to see how the chapter will end. Once I know the ending of this one, I will begin to write the next. What does all of this mean for my life, and for the time I have left…?