Misdiagnosis and Medical Errors
08.26.02. August 26th – each year – is designated as Women’s Equality Day. (Did you know that?) This day was also very important for me because this is the day that I was told – after my second diagnostic colonoscopy – that the doc had “…good news and bad news. The good news is that you are not going to have to wear a bag.” (Today in COLONTOWN we PROUDLY offer our very own STOMA CITY!)
I will never, ever forget this day, this statement, the posture of the GI doc who – leaning against the door jam of the little room to which I had been brought – said this to me. Keep in mind, I was still under the influence of the drug they had given me, so my verbal reaction seemed a bit odd to her (as she reported to my PCP). “Can I go swimming tomorrow?” I responded, leading her to think that I hadn’t “gotten it,” as I learned later.
I understood, all right. I remember being very concerned that she was going to tell me that I should not take my life right back up; I knew that going swimming the next morning was going to be very helpful to me, right away!
What led up to this moment had been almost two straight years of being misdiagnosed, complete with provider errors. Getting this statement from the doc that there actually WAS something that was causing me such illness was actually a relief (I’m sure that I am not the only person that has felt this).
The horror of 9/11 was actually the week that I realized that something was also very wrong with me physically. I remember saying to myself that this event was horrifying and – at the same time – telling myself that I felt horrible. While my denial had kept this sense of fear tamped down for the prior year-plus, the week of 9/11 somehow made me realize that I did need to press my “case” that something was – indeed – wrong with me.
My PCP, however, just couldn’t see it. After 9/11, I went to see her, letting her know that people were commenting to me that I didn’t look well. I was then having bouts of days that were bad — but not yet all days. I was trying hard to be a productive business owner but was failing at that, bringing in zero income.
My doc’s first response was to order a blood test. Here’s how it went for me until that fateful day the next August.
- “I have the blood test results. You are anemic. I want you to take iron pills.” (NOTE: NO mention of… “we need to explain your unexplained anemia.”) I dutifully took the pills, not asking the important WHY. I was 57; I had never had – nor had I asked for – a colonoscopy.
- Starting to experience restless leg syndrome and feeling bad, I began being a monthly visitor to my PCP’s office. No one mentioned the scope; neither did I. Tranquilizers started to be in my routine.
- December was a visit that was done with another doc. “Oh,” he says – finally – “you haven’t had a scope. You need one.” He performed a digital exam and found occult blood. “Better schedule that scope,” he said to me. Here’s where you all need to know how stupid I was. A childhood friend had told me that the colonoscopy was a “terrible experience,” and I had thereupon decided that I would “never have one of those”…DUMB!
- I Remember taking my time to schedule the colonoscopy (I didn’t want to do it!), but I did finally get it scheduled for end of January of 2002. Result: the GI doc came to me afterward to tell me that he hadn’t been able to get “all the way through,” but that “all was clear.”
- A re-visit with that GI doc a few weeks later resulted in his telling me that “…you have IBS, just like I do!” This in answer to my question of, “If I’m so OK, why do I feel so terrible?” My second mistake: accepting this answer from him unquestioningly.
- Another visit to the PCP resulted in not another scope (which I should have demanded) but in a referral for a barium enema x-ray……lots of fun!
- PCP’s follow up to me: “Your x-ray is marked ‘unremarkable’.” “You are just going to have to learn to live with this, Erika…” she also said. Again, I should have asked her if SHE had actually seen the scan. Had she seen it, she would have seen the tumor; any fool could have seen the tumor that I saw in the scan 6 months later. The lesson is clear here: MAKE SURE that your doc sees the scan itself. Push for this. My scan was mislabeled with another’s name or something. My surgeon -prior to surgery – showed me the correct scan (he was furious). Even I could see my tumor on that scan — from 6 months prior.
- The next six months were kind of a blur…..of being increasingly in bed, sick. I can remember feeling relatively “good” in the early mornings, but I would take to my bed for the rest of the day. I would tell myself that “tomorrow” I would feel better, and I’d be able to get something done.
- My PCP FINALLY told me that I needed to reschedule another scope; that scope was scheduled for 8.26.02.
This date: 08.26.02 is as important to me as my own date of birth because of the transformational opportunity that that one event – my diagnosis of and experience with cancer – has offered to me. Another date is upcoming that has almost that same significance. March 6, 2011 is the day that I was able to deploy COLONTOWN, the evidence – I believe – of the transformational effect that my cancer diagnosis has had upon my life.
My gratitude cup runneth over. May you experience the same!!!
Erika Hanson Brown, Founding Mayor of COLONTOWN
Are you a colorectal cancer patient or caregiver? Join COLONTOWN and find your people!
CEO & President, PALTOWN Development Foundation
Ms. Brown, a Montana native, had a long and healthy career as a corporate executive search professional in the consumer packaged goods and telecommunications industries until – at age 58 – she was diagnosed with late-stage colorectal cancer. Once her treatment was completed, she refocused her professional energies on the undeveloped niche of disease-specific patient empowerment, founding COLONTOWN, the patient community. COLONTOWN features deeply engaged, experience-specific, secret support groups that are exclusively dedicated to colorectal cancer patients and family members.
In 2016, Brown co-founded the PALTOWN Development Foundation to create additional disease-focused communities for even more patients and families. COLONTOWN is the model for patient community building, providing the template and proof -of- concept for disease communities that will be developed.
Erika holds a B.A. in Liberal Arts (French) from the University of Montana.
Ms. Brown is grateful, empowered, and disease-free – 14 years later.