I don't want to write this post. Not because I don't like talking to you, or because I don't want you to read my blog, but because I feel silly. Here's why:
I got a second opinion for surgery from a colorectal surgeon.
Second opinions in medicine and why they're important
As you know, I worked full-time in the cancer community for five years. I know the importance of second opinions for cancer. I can't tell you how many blog posts, web pages and publications I've written and edited that tell fellow patients to not make any moves until there's a second opinion. Insurance typically covers the cost of these visits, so it *should be* a no-brainer.
But, know what? It's hard to wait.
It's hard to slow the mind and not react to the "you're going to die," (and other unpleasant thoughts) racing through your head.
Cancer carved a pathway in my brain that less-threatening situations can't help but slide down too. It's also not fun to pay more co-pays for doctor's visits, which is an unfortunate reality for those of us who budget around these co-pays, prescriptions and deductibles.
Truth is, some patients cannot afford the money, nor the time, to get second opinions (not to mention their doctors don't encourage it). Second opinions are an odd luxury. But, they're a necessity.
Why I got a second opinion about surgery
I can go slow in my considerations of having surgery to remove the remainder of my large intestines. I'm not facing a new cancer diagnosis, so things don't need to be rushed. Being in Kansas City, I have many great doctors to consider.
But when I woke up from a colonoscopy that found polyps for the third year in a row, nothing about time felt slow. The agreement to consider surgery from many on my medical team reinforced the feeling: this is important, I need to act NOW.
I'm a mom for gosh sakes!
To catch you up on the latest, on day of my colonoscopy, once I got home, I called my original surgeon's office right away and scheduled an appointment. The earliest available? December. I took it. And then, I shared my news. First with friends and family, and then to the blogosphere.
Suggestions of other doctors came in, many pointed to the same person, a new surgeon for me.
I fought the fear of being disloyal, pushed through the murky anxiety of trying something new, and I ended up making an appointment and having a really good visit with the suggested surgeon a few weeks ago.
I left the hospital with a plan and mulled over surgery decisions, just like I told you. I made more appointments at the hospital and planned to follow up in 2019. And then, I forgot I'd scheduled an initial appointment with my original surgeon.I debated cancelling it when the office called with my appointment reminder, but something inside of me said, "Wait - get the second opinion."
I'm really glad I did.
New thoughts on my polyps and prognosis
Not only was my doctor's huge smile from seeing my name on her chart, and then me sitting on her table, refreshing - but it's just what I needed in the middle of this whirlwind.
Side note: If you're in the medical community, never underestimate the power of your smile and remembering your patients' names. Bonus points if you know their stories and say things like, "It's so good to see you," "You look great!," and "How old is your daughter now?"
So, I sat on the table and began to explain what led me to schedule an appointment: the colonoscopy, the polyps, my poor quality of life that doesn't seem to improve. She nodded, she understood, and she looked me straight in the eyes.
And then, she surprised me. She suggested a few other ideas that didn't involve surgery. At least not yet.
I was basically told, "We've not medically managed this well and exhausted everything to get you feeling better as far as your side effects go. I think there's more we can do, and let's work together on it."
As a patient who connects to a doctor not only for their intelligence but also their emotional connection, humility goes a long way. Teamwork makes the dream work. I was sold.
Proctitis, Radiation and other GI Issues
We sat and discussed my current list of woes - the itching, burning and bleeding problems. We also covered my urgency issues and dependence on over-the-counter, anti-diarrheal pills (six pills at a time, every other day or so).
She had some ideas - a new medicine I can try that works as a binding agent. Potentially beyond that, a small, robotic simulator thing that helps many patients with incontinence. My mind spun out as I began to consider them.
"I get it, you're worried," my surgeon's voice broke up my anxious thoughts.
And suddenly, she'd pegged the exact emotion I've carried since the day I left the GI's office in a fuzzy, anesthesia-induced fog: fear.
I left the original surgeon's office with a lot to think about.
Should I continue the plan and get surgery? Do this while I'm young and healthy? Take the aggressive approach and remove the colon before cancer forms again? Is surgery inevitable - get it over with now?
Or, should I wait?
Listen to my original surgeon's offer to walk through this with me and exhaust all medical options before surgery? Try a new medication? Be willing to take this six months at a time and let her help me? Bank on the reality colon cancer is actually preventable?
Decisions, decisions - my mind began to race. And then, I felt very silly. Why? Because of what I've shared so far.
As I began to reconsider based on my second opinion for surgery in spring, I immediately faced self doubt.
On top of fighting the medical fears came embarrassment. I've already blogged about this and nearly made up my mind. I've been called "brave," and I wrote about it! How is slowing down and taking this step by step brave? It feels anything but heroic. Like I said earlier - I didn't want to write this post. But I couldn't not write this post. Why?
Because it's an honest patient perspective, and I owe that to you.
Vulnerability isn't easy (or we'd all be doing it more), yet vulnerability is what we all crave.
I can't only show you the good, and not the bad, and remain authentic to what I say and write. The truth is, long-term cancer survivorship is messy, confusing and hard. Plus, I genuinely need your support and prayers; they led me to this place.
I fully believe prayers helped guide me to new wisdom where I learned about more medical options and received encouragement to take this big surgery decision a little slower.
In all of this, I've been reminded this is exactly what second opinions are for. So, I've decided to hold on surgery and get scanned again. I've chosen to wait.
2019 Update: See the results from my follow-up colonoscopy after I decided to wait on surgery.