Trust, Revisited

Cold creeps through my fingertips like/The frostbitten night, the frostbitten night

Cold creeps up the length of my spine/I’m surrendering, I am surrendering.

Cold creeps stole the innocence/Look what they left me with, look what they left me with

Cold touches instruments/Dig into my head again, dig into my head

Owl John, “Cold Creeps”

One month ago, I wrote a post on the concept of trust. It explored the difficulty of trying to find a way to balance between (as the National phrased it in those opening lyrics) “careful fear and dead devotion:”

“Trust is one of those things,” I wrote, “that is shaped by our experience with the world. The more we get hurt, or the more we have experience with those who are in positions to do right and yet still fail to do so, the less we are inclined to have faith that things will be different in the future.”

I dove deep into exploration of how I could begin to move past my own lack of trust. How could I look beyond my self-protective black and white thinking to see all of the shades of grey in-between?

“There are “good guys” and “bad guys” in every profession. There are “good guys” and “bad guys” at every level of authority… (and) there are lots of people with good intentions who simply make mistakes. I am one of those people. I’ve been learning to expand my heart to let those people in.”

I am flawed. I make mistakes. I have to allow other well-intentioned people to make mistakes as well. But…

“When it comes to my medical team? My standards will remain higher. Because I deserve BOTH the best care and the best expertise. Everybody does.”

Little did I know just how deeply the week and month that followed would put all of these explorations to the test. The day I went in to my surgery- a surgery that never happened- and the events that followed took away all of the weight that I had placed onto trust. What’s left is the sound of the crash from the scale of fear hitting the ground.

I’ve written before about the notion of death being my constant companion. My back seat driver. It tells me to pay attention. Not to drive too fast, to take the time to notice the details. This companion is sometimes thoughtful, often sad, and sometimes filled with love. Since that day in Cleveland last month, that companion, more than ever, has been dressed in a cloak of fear.

The fear sometimes creeps like a shadow. A constant, dull complement to my daily life. Other times, it is a boxer, hitting me from the left after a moment of normalcy and joy. I fall outside of myself, then remember in one hard, swift blow.

And often- especially lately, the fear is those instruments digging into my head again.

When fear takes over from sadness, it has a mission- to fight, flee or freeze. My fear went into fight mode. Flying to Baltimore. Re-visiting Ohio State. It was searching for solutions and for a new team that could give me hope and restore some of the trust that had been broken. Ultimately, those alternatives fell through and I find myself, one month later, right back where I started. Headed back into surgery at Cleveland.

But my experiences did teach me a lesson. And it’s one that I hope that anyone who is reading this who has cancer, or who loves someone who has cancer will learn from- don’t ever take just one doctor’s answer as an absolute truth.

I’ve learned that 90-95% of surgeons and oncologists play by the book. Another word for this book is “standard of care.” If I had only asked Ohio State, I would have received the book answer: You only operate to remove cancer if it is limited to one location. Resection, even at a future date had been removed from her vernacular altogether. Go back to chemo, was her answer.

You have to go out and search for the most skilled surgeons.  Surgeons willing to take a risk. Often they are at major cancer centers, such as MD Anderson, Memorial Sloan or the Cleveland Clinic- but not always. Sometimes the bureaucracy of the major centers can themselves hinder even skilled surgeons from going too far out on the limb.

The surgeon that I saw in Baltimore is a renowned surgeon in the area of HIPEC (heated intraperitoneal chemotherapy). He took a look at pictures that my liver surgeon had taken of the laparoscopy monitor and said “that’s actually not that bad.” He was willing to do HIPEC and operate on the liver. I got the feeling that this was a person who has reached a point in his career where he can afford to pick and choose his cases. To find the tough ones and take them on. In the end, my case was too tough for him- NOT because of my peritoneal mets, but because of my liver mets. He could do both, but not with that much liver involvement. He wasn’t specialized enough in liver surgery for my particular case. And so? Go back to chemo was his answer.

Cleveland has been all over the map. First, my surgery didn’t happen because my peritoneal mets were too extensive, and since he could only operate on the liver if the peritoneal mets were addressed in the same surgery it had to be called off. Then, I could have the surgery, but a modified version of it.

And that modified version has changed slightly in every conversation. Not a full resection of the liver, but ablation of visible tumors. Then the paperwork comes with scheduling for and insurance approvals for a total left lobectomy plus ablation of right-sided tumors (my original surgery).

As of yesterday, I learned that he is planning on doing a wedge resection and ablation of “visible” tumors, offering clarification that visible means by imaging and not the naked eye. “Don’t worry about the paperwork” he says, “just ask me.” Reading between the lines, I am guessing that the more aggressive surgery is on the paperwork either as a contingency (just in case he can do it after all) or (more likely) they just didn’t edit the description from the prior surgery.

With Cleveland as the only surgical option left on the table, I find myself back where I started. I am once again handing my length and quality of life over to a team that has broken my trust. I fully expected, after my discussions with Baltimore, that they would see my liver met growth, back out, and (just like everyone else) and tell me to “go back to chemo.” Only this time, the reason would be my liver instead of the peritoneum.

“I reviewed the MRI scans, and I didn’t see enough significant growth to preclude the surgery.” I tried not to show it, but my jaw hit the floor.

Three surgeons. Three locations. Three different answers. Only one team that would do the surgery.

If you want to take an aggressive approach, don’t ever take that first answer as gospel, especially since 90-95% of the time that answer will be standard of care protocol. Go to another major center for a second opinion or get access to online forums and research other patients’ experiences. Who was their surgeon or oncologist? What was the outcome? This will identify to you where to go to find a doctor who will take a risk. This is most important for stage 4 cancer patients. If you are not stage 4 (metastatic), and the odds are in favor of survival, standard of care in most cases IS your best option.

My survival statistics are very low. Going back to chemo with the knowledge that it will eventually fail is like playing poker, but never pushing “all-in.” The blinds are eventually going to bite away at your stack until there is nothing left. The cancer will grow resistant to chemo and win. The only way for a chance for longer term, to make the final table, is to take that risk. To push all in.

I am terrified. How do I put my length and quality of life into the hands of a team that has already broken my trust?

Fear’s instruments go to work, digging deeper than ever before.

After yesterday’s appointment, which was heavily focused on ensuring I signed all of the authorizations, my leading theory is my first surgery was called off because they had failed to have me sign an authorization for HIPEC, so the HIPEC surgeon backed out with the excuse that the mets were too extensive. Of course, I really have no clue, this is just my mind on overdrive searching for answers that make sense, since I haven’t gotten one yet from the team itself.

Nine times out of ten, I would take integrity and honesty over skill and knowledge. But in this situation, I find myself hoping it was self-protective lying. Because if my HIPEC surgeon really thought that the peritoneal mets were “too extensive for anyone to handle” he has no business operating on me at all. Especially given the high risk for complications with this particular surgery. And the chances of it coming back soon if it isn’t done correctly.

And then I worry about the lack of response to my MRI. Did he do a close enough examination of the images during the short time he was away? Is he rushing in without adequately re-examining because he doesn’t want to call off surgery a second time? Is he rushing in out of guilt because they messed up last time, and have now put me at risk and the mets grew because of my extended time of of systemic chemo?

Dig. Dig. Dig. I wish I could be going into this surgery with a fresh start. I wish that I could go back to that place. Before September. Back to the place where I could go into surgery with confidence that everything would be okay. Where doctors would “do no harm.” But this team is my only surgical option right now. So I have to go back.

I have to go back to the same check-in desk, get the same speech and wait for my name to be called. I have to go back to the same PAC-U that left me with needle scars that remain a month later. I have to say goodbye to my husband again before they push me through the doors to the OR. I have to be told to think “positive thoughts” before the anesthesia mask is put over my face to knock me out. I have to be wheeled down those same hallways where I woke, saw that there was no surgery and asked for answers but received none. I have to go back to the place where the nurse made jokes and shuffled me out as quickly as possible after my surgeon said, “I am sorry” with finality.

“But there is a time and a place for everything. I have attended to all of the things I can control…”

It’s scheduled. It’s happening. At this point, I have no choice but to take as much weight as I can off of the side of fear and back to the side of faith and trust. I remind myself that my liver surgeon is highly renowned, and that he has a vested interest in this surgery being as successful as it can be. I have to remind myself that this is the surgeon who has spoken to me on his personal cell phone and answered personal texts on multiple occasions. I have to tell myself that they wouldn’t have an incompetent surgeon on staff performing HIPEC at the Cleveland Clinic. I have to remind myself that the surgeon who is operating on my bowels was both direct and personable; and that he is on a team of GI surgeons ranked #2 in the country.

I have to tell myself that they can do this. I have to tell myself that I can do this. See you all on the other side of surgery.