I’m on my way to God don’t know or even care
My brain’s the weak heart and my heart’s the long stairs
My heart’s the long stairsInland from Vancouver shore,
the ravens and the seagulls push each other inward and outward
Inward and outwardIn this place that I call home
My brain’s the cliff, and my heart’s the bitter buffalo
My heart’s the bitter buffaloWe tore one down, and erected another there
The match of the century, absence versus thin air
Absence versus thin airOn this life that we call home
The years go fast and the days go so slow
The days go so slow.Modest Mouse, “Heart Cooks Brain
- Societal Expectations
- Rules, norms, or protocols
- Authority, power, or oppression
- Emotions (especially fear, hope and love)
I had a course laid out before me. I was going to get a liver resection, and possibly some other interventions depending on what my surgeons encountered. I knew that the seas on this path could be painful and bumpy, but I was ready for them. What I wasn’t expecting was that the ship would end up stopping, with guidance to change direction altogether.
When I woke up, the message I got was that there was no longer a charted course that would lead me into surgery. That course we had planned on was a longer one, one which would lazily meander around many more islands and options to come. The course I woke up to was a straighter course. Fire up the engines, make a sharp turn into chemo to charge quickly and efficiently through toward my final destination.
On the day of my intended surgery in Cleveland, authority has stepped in and told me to eat my green beans and go to bed like I’ve been told. “The peritoneal metastasis is too widespread. I’ve never seen anyone take on that much. I’m sorry.”
They want me to comply, but I HATE green beans. And dammit, I’m just not ready to go to bed yet.
When the surgeon calls me the next day he offers another solution. “I can offer you surgery with HIPEC, but not a full resection. And I’m not sure that it will provide much of a benefit over going back to chemo that will be worth the time for recovery.”
My intuition (spidey senses?) tells me that “Dad” is feeling guilty about making me those green beans to begin with. After all, he had promised me something different. Something happened I wasn’t privy to while I was unconscious. I suspect that my HIPEC surgeon was the impetus. Either he didn’t want to take on such an involved surgery that day, or he didn’t feel capable, or they over-promised what could be done without discussing as a team. Or maybe they forgot to make sure they gave me the paperwork to sign to authorize the conditions that would turn on HIPEC (this is my latest theory). Whatever the cause, it led to the order of green beans and bedtime as a rushed reaction.
Will he ever admit to it? Of course not. He can’t call me up and offer the same surgery a month later, because then I would know that they screwed up. So he’s going to tell me that I can eat a half portion of green beans and stay up a half hour before bedtime. But don’t blame me if you feel tired in the morning. I warned you.
When I fly out to Baltimore, I get a dash of hope. The same cell phone pictures of my mucinous metastases that were used as scare tactics in Cleveland are met with “that actually isn’t that bad” by this HIPEC surgeon.
I visit OSU the next week and they are firmly on the green beans and bedtime protocol (we can’t resect your liver if there is also metastasis to the peritoneum) but the surgical intern tells us that the HIPEC surgeon’s notes- which I haven’t been given access to- calculated my peritoneal cancer index score at a 12. HIPEC is considered by most surgeons to be an option as long as the number is under 20. I remember again the words on the day of surgery. “The peritoneal metastasis is too widespread. I’ve never seen anyone take on that much.”
Well, that may have been what the HIPEC surgeon told you, but it isn’t true. This could be why you offered me a different surgery the next day when I asked about my PCI score.
Baltimore is willing to operate on both the liver and the peritoneum. We met with a surgeon who has devoted 30 years to HIPEC, who is willing to take on tough cases, and who isn’t afraid of my peritoneal disease. The problem is that my liver disease might be too much. He initially even said that a full resection could be done, but dialed that back significantly in a phone call later. We will see what the conclusions are when we meet with him again.
So next week, I get another MRI; another laparoscopy, another surgical opinion that will more likely than not lead to disappointment. In the meantime, I’ve rescheduled my Cleveland surgery for two weeks after next week’s laparoscopy in Baltimore. I’m pushing forward with plans A and B in play.
Right now, I have a surgery planned for April 4th in Baltimore. I have a pre-surgery appointment scheduled that same day in Cleveland. I am courting two lovers. I’d prefer the new one. The one who didn’t lead me on and then shut the door in my face already. But if he turns me down? I still prefer him to chemo. It is a dangerous game. Part of me is worried that both will fall through.
Would you do this if a million dollars were on the line? What if it was worth MORE than a million dollars on the line? Would you do it if YEARS of your life were literally at stake?
The truth here is that- at this point- no matter WHAT I do I am taking a risk. HIPEC surgery is brutal. I’m looking at losing my uterus, and possibly also having my bowels redirected into a permanent ostomy or ileostomy. Then there is that whole “washing my insides out with heated chemo for 6 hours” bit. I’m also looking at a minimum of two weeks in the hospital and probably 50-60 days after surgery before I can get back to systemic chemo. During this time, my cancer could spread to another location, or some of the surgical progress may be undone.
But if I DON’T take a chance on HIPEC surgery now? I am facing the strong likelihood that systemic chemo- which is usually not very effective on peritoneal mets- will do nothing to reduce the metastasis in this area. If a new line of systemic chemo doesn’t work, the peritoneal disease will quickly reach a point at which ALL chances for HIPEC are off of the table. And the peritoneal disease will most likely kill me quicker- and more painfully- than the liver disease would.
So here I stand, in the waiting place. Here, in that “most useless place” I wait for another MRI and another surgical opinion. I wait to see whether Cleveland will stay on the table as a backup plan. I wait for these “winds” to tell my sails which path I must take from here.
The “winds” of my heart say surgery, and have told me to push for it, leading to possible, but risky options. But the logic and protocols of the authorities I am depending on are even greater forces. And they are setting me up for another possible crushing defeat. As the lines in the opening versus allude, “My brain’s the cliff/ My heart’s the bitter buffalo.”