Protocol is Great … Until it’s Not

July 14, 2016

For the purpose of this post, I define “protocol” as a plan or procedure for diagnosis and medical treatment.

I’ll admit, after four years, I am losing patience with those in the medical community who try to fit us all into a single box. Particularly when they stop using protocol as a baseline for diagnosis or treatment and it degrades into dogmatic ideology. Don’t get me wrong, protocol is great and has been proven effective (or it wouldn’t be protocol). Most of the time, it serves the patient, and the medical professional, well. However, if a treatment doesn’t work or the issue isn’t resolved, IT IS TIME TO TRY SOMETHING DIFFERENT. Sometimes, when you hear hoofbeats, it may really be zebras rather than horses.

Today, I read an article that immediately PISSED ME OFF because it shows how much we are lumped together without recognizing that there will be exceptions to the rules and, therefore, a need, when necessary, to think outside the box. The provocative headline shouted “Pelvic exams for healthy women have no proven benefit, U.S. panel says.” It was published on the PBS website, which in my opinion, offers even more legitimacy. Well, duh! It’s not the healthy women that we have to worry about … it’s the ones that may not feel or recognize symptoms. It’s women who, even though they aren’t categorized as “high risk” for cancer, have undiagnosed or precancerous conditions. Women like me who didn’t fit into a high risk group. After all, while I was overweight, I was eating healthier than I had in years, had not eaten red meat in over 20 years, was exercising like crazy (I had even lost over 100 pound), was a moderate drinker, non-smoker, was considered young for this type of diagnosis, and had no family history.

All I could think about when I was reading this article was that (1) some women will assume that pelvic exams are unnecessary because “the medical profession” and mass media told them so and (2) the insurance industry will use those findings as a way to deny coverage for pelvic exams. I’m not saying that I think they should be required in every instance or that the information shouldn’t be out there for us to read. What I am saying is that these decisions need to be in the hands of the patients and their physicians after a thorough discussion and review of medical / family history.

We, the patients and the medical professionals, have to have frank discussions on our individual diagnoses and treatments. There has to be a willingness to go outside the box if something isn’t working. Even if our final diagnosis fits into a nice, neat category (i.e. ER positive breast cancer), the treatment may not. As my radiation oncologist reminds me “cancer doesn’t read the manual.”

The battle to find, use, and, if necessary, discard protocol is a continuous one with people who have chronic or terminal illness. This is particularly true since the diseases and treatments can sometimes silently, some times not so silently, cause other issues. Since December of last year, I have been fighting extreme joint pain. Once it became incapacitating, I realized that other, more subtle issues, have been creeping up for over a year. I had pain in my fingers and toes that was attributed to diabetes. It became so bad that I could no longer grasp things. I developed pain in my right wrist that was diagnosed as a pulled tendon. I fell down a flight of stairs because my joints were stiff. I was tripping over my feet. I couldn’t sleep.

My doctors ordered tests to see if the cancer had spread in my bones. When those tests were negative, they approved physical therapy so that I could at least start living my life again. It helped, but didn’t resolve the issues. I was at the very end of my rope. I could barely get out of bed. I was in tears trying to bend to use the toilet or lift my leg over the tub. I had bruises everywhere. I could no longer walk, go to the gym, or even get out of a vehicle without having excruciating pain, particularly in my right knee. I was ready to quit. I couldn’t do it any longer. It came to a head when one of my doctors told me it was my “weight and age.” That I needed to keep exercising and losing weight.

I didn’t expect him or his staff to remember that I did exercise – walking three to four miles a day, weights at the gym three days a week, and periodic yoga classes – or that I had worked very hard to lose weight or even that I wasn’t lying to them (or deluding myself), but I did expect them to at least check their notes and see my history. To not assume that because I was overweight and over 50 that somehow this was my fault and I just needed to try harder. Again, I left their office in tears. I rarely cry. Normally, if I do, it’s because I am extremely angry. However, again, my body was betraying me and my medical team, who was supposed to be there for me, was refusing to believe that something was going on with my body. What was happening fit a specific protocol and they weren’t willing to look outside of that box.

Luckily for me, I had seen my radiation oncologist previously and, after describing what was going on with my body, he said, “You have a rash on your forehead. I think you need to see a rheumatologist because you may have rheumatoid arthritis.” My internist scheduled me with a rheumatologist. Within minutes of examining my legs, he said “I have to do some additional testing, but I believe that you have psoriatic arthritis in your left ankle, right knee, and possibly your hands.” That day he gave me a shot of cortisone, some anti-inflammatory medication, and scheduled blood tests and x-rays. I was later put on medication to treat psoriasis and psoriatic arthritis. It’s been over a month. The “rash” on my forehead is going away, the pain has lessened, and (thanks to the ability to exercise again) the stiffness in my joints has been minimized. I can even make a fist again! I shudder to think where I would be if I hadn’t had two doctors who looked past protocols that weren’t effective, listened (and believed) what I was telling them, and worked with me to find a solution. I’ll admit it. I was ready to give up. Something I didn’t ever think I would do.

Even after four years, I almost gave up. I still cannot believe it, but I did. I was going to let someone else decide my path … not help me follow the path that was right for me, but actually follow the directions based on assertions that I knew were wrong. Thankfully, when I was weak, exhausted, and in pain, I had people in my corner who held me up. Who told me that they trusted my instincts even when I forgot how. Thank you.

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2 Responses to Protocol is Great … Until it’s Not

  1. Brenda July 14, 2016 at 10:42 pm #

    Every patient MUST continue to advocate for themselves or whomever they are helping. Don’t let the Dr put your life in a generic box.

  2. Ann July 15, 2016 at 9:24 am #

    First off, I’m very glad to see you’re posting again. Knowing you as I do and having physicians-friends, I am more and more certain that the art of medicine and healing begins with listening. And asking questions and listening again in an iterative process that can lead to action. It is hard work to teach others how to listen to us; but I think that is what this blog, this post does.

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