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.
And not only did my doctor's second opinion make me stop and think twice about my current path regarding surgery decisions and getting an ileostomy, it stirred up anxious thoughts full of self doubt.
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.
I actually find the fact that you blogged about one decision, only to blog about another decision.. a good thing. From where I sit, having never been through anything like you are working through, I see you going through a series of thoughts, experiences, decisions that SOOO many others go through, but that don’t usually have a light shined upon. There seems to be, again from my seat far away, a stigma surrounding how you are “supposed” to handle these things. How you are “supposed” to feel. And non of it seems to be realistic and without a doubt, feel it causes unneeded stress and pain for anyone else going through something similar.
By you blogging about each step along the way.. showing us all, including those going through similar experiences, what your thought process is.. it brings us all into your journey, to better understand your contradicting thoughts and suggestions and it is absolutely important to be shared!
Your honesty and vulnerability in sharing all of this with the world, should be celebrated and you should be applauded for your courage. You are a lighthouse – standing strong through the storm, shining your light for others to see. If your words help even one person(ship) get through their struggles, it has to be seen as worth it! I hope you continue to be yourself, be real, and stand tall as a you guide others through their own storm.. and show that it is ok to have doubts and fears, but that in the end.. with faith and hope, the shines brightly at the end of the fight.
Just my thoughts.. 🙂
There’s so much I want to say in response to this, but for right now I’ll say – you’re such an awesome friend and I so appreciate you taking the time to write this to me. And thank you – I think I needed to hear that. 🙂
I have no answers I too am living with cancer that is resting. It will wake up someday and I will see Jesus. But I am much older than you & have had a great life. I assure you I will pray daily for you & your family. Keep the faith & appreciate you being real. ???
You used the word silly and it made me laugh. I was a patient at Mayo in Rochester and I had the most fantastic surgeon in the world, pure grace that I got him, but nevertheless even with him who tried so hard to make me feel welcome and as if I were the most important patient in the whole world (and I am not) there were a moments when I felt completely silly discussing my symptoms and mortified during the examination. But the silliness and mortification begin even before we meet with our health care providers. It begins at the thought of seeing the doctor. And gets worse as we begin the routine forms in the waiting room. You know the checklist of symptoms we must think through before we see the doctor? Lately I feel like just checking anything and everything being convinced the doctor does not read the form. The last question on the Mayo form is ‘How embarrassed are you’? I usually check ‘not at all’ because I am brave, right? But on my last visit I left the question blank, realizing that the whole experience of visiting the doctor and discussing things I don’t even want to discuss even with myself produces a mind numbing anxiety. I feel so silly and more often than not incompetent in the presence of physicians and medical staff, who are usually superior beings, right? That sounds reasonable, right? I’m thinking maybe the silliness, humiliation, incompetency and anxiety we experience might instead be laughable moments, but don’t laugh in front of the physician. It’s all so silly. Here we are trying to be good patients for our physicians. Why does that matter? Trying to save our own lives by trusting them to another being who has little knowledge or cares for our lives. My dog is a better listener than most of my physicians and I don’t have a dog. That’s how silly and isolating the whole experience of being chronically ill is. It’s like being invisible with an invisible dog that is actually a pretty good listener. Now, I have reason to feel silly! If you want to, if you feel the need to have a good listener with you during any of your medical appointments you can bring my dog with you. But don’t laugh when the dog rolls his eyes as the physician says something that sounds sort of human, like ‘that sounds reasonable’. We don’t have to be perfect patients or perfect human beings and it is perfectly okay to feel and to even be silly! I know God wants to see you smile.
So true, why do we struggle so much with feeling silly? I suppose maybe by bringing it to light we’ll help others embrace it!
You are my favorite Danielle and I’m proud to call you my friend. Your honesty is refreshing and your voice is reassuring. Keep doing what you’re oh so good at. We need it!
You’re great friend. And thank you – if I can be anything, it will be honest. 🙂
Enjoying your Advent Devotional book! Greeting from another St. Clair, Missouri fan.
Thank you, so grateful!
Once again Danielle, your writing is compelling, fresh, helpful; r e a l. Wanted to chip in 2 notes, as your 2nd-Op doc accurately says: “We’ve not medically managed this well + 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.”
Sensible, hopeful, informed. At the same time, this doc uses the words “not…exhausted everything,” maybe not 100% knowing how ‘exhaust-ing’ for you it likely has been living with your particular survivorship issues. Plus, your “side effects” have been for weeks-months-years, not hours-days-weeks. 2nd doc hasn’t felt what you and your fam have felt, for years, the downs as well as the ups.
Second, a top U.S. onc-research doc (Top 10 is U.S.) once told me in an interview (paraphrasing for space): “Sometimes you can replace a burned light bulb 3 or 4 times over a short time… great-good light each time (‘side EFX,’ managed!), prob apparently solved. Except: What if the problem isn’t the bulb? What if it starts/started 15 feet across the room in the light switch wiring?” Then I got it: Even our best CRC local surgeries/Rx’s/radiations treat the probs at the locations responsible for side EFX + cancer spread. They don’t necessarily eliminate/prevent the cause. There’s obvs more to the story, esp. with Lynch Syndrome in the mix. But this “light bulb” moment has stayed w me for years as a survivor/health writer. Hope it helps! xo
Absolutely it helps! This is so helpful feedback and important ideas for me to consider as I mull over the options. I agree with you and that wisdom. I think while I don’t want to rush into anything, the “Light bulb” idea is sticking with me.