Five days ago, I had a colon resection to remove a cancerous tumor. Translation: I had colon cancer. Having found out at the end of March and gotten the surgery by the beginning of May, by modern standards I moved at the speed of light, even if the wait felt like eternity at the time.
The wait wasn't eternal, but the time it took for the cancer to develop was, of course, much longer than six weeks. One doctor says four years, another says ten. Based on my symptoms, I'm going with the latter.
But how, you might ask, could I have missed it for so long? Good question. Because I didn't miss any of the symptoms, and I brought them up to my doctor at the time. So the answer is that I didn't miss it, but she did.
About a decade ago, my digestive system started being erratic. I brought it up to my doctor, who didn't have any special insight. Frustrated, I did some internet "research" and thought my symptoms fit Irritable Bowel Syndrome. When I told my doctor that I thought I had IBS, she shrugged and said that if I thought I had it, then I probably did. Okay then. Only thing is that there's no treatment for IBS, so the shrug fit.
I was also experiencing aches and pains as well as fatigue intermittently. When I brought it up to my doctor, she said the primary reason people would have those symptoms was because of depression. I really didn't know what to say because I wasn't depressed. Very stressed with life issues I've talked about in this space, but not depressed.
I was, however, suffering from Post Traumatic Stress Disorder, and when some of those symptoms became unbearable, she prescribed me a medication that was known to cause digestive issues, or, in my case, exacerbate pre-existing issues. When I brought it up, she said that sometimes digestive issues were associated with mood disorders, so this might end up resolving my issues eventually. Spoiler alert: it didn't, and I stopped taking the medication after less than three years.
Low energy, aches and pains, digestive problems, and life issues -- but I was still as active as I could be. I also ate a mostly vegan, gluten-free diet (and when I wasn't vegan, I was vegetarian), never smoked anything, and drank sparingly if at all (and for the last few years, I've drank nothing other than kombucha -- and I don't even drink that anymore). In other words, my only risk factor for colon cancer was my weight, which, oddly, seemed to accumulate around the time all of these symptoms began. Perhaps you've guessed by now that my doctor was laser-focused on THAT, to the point where I couldn't come in for something like an ear ache without her having me weighed.
You would think that since she was so obsessed with my weight and since I had complained about all of those other symptoms she might have said at some point, hmm, maybe we should do a colonoscopy. And I believe she did -- once. But she suggested it in such a way as to make it sound unattractive, and I declined. Forgive me for thinking that since my symptoms persisted, her suggestion should have as well, especially since she was ALL OVER ME when I had a relatively rare symptom of breast cancer. She would not accept a good answer, and I finally ended up with a surgeon. The culprit: a traumatized milk duct (which maybe shouldn't be a surprise in someone who nursed four babies past the age of two). When she wanted to aggressively pay attention to something, she could.
To be fair, she wasn't the only person in the medical field who didn't take me seriously. When my husband dragged me to the ER in 2018 because of chest pains and feeling like I was going to pass out, one of the ER residents used the word "unimpressed" to describe his evaluation of my EKG and overall presentation -- until a test showed that I had elevated levels of troponin. Credit to my cardiologist (not the resident): he aggressively chased theories and tests, but when my PET scans came back clean, he threw up his hands. It was a mystery, but as long as I kept exercising, I should be able to prevent it (never mind that the two episodes that required hospitalization were set off by working out at the gym...).
Do people get why I did NOT want to go to the doctor after a certain point? Because while no one said they thought I was crazy, it's pretty easy to tell when people aren't taking you seriously.
My theory to explain everything was Chronic Fatigue Syndrome, because that was a great explanation for why sometimes I was just so god damned drained sometimes. It was also, like IBS, something that was real (in other words, I wasn't crazy), but no harm, no foul, since the medical profession couldn't treat it anyway. Oddly, this didn't do anything to make me feel like anyone was taking me more seriously.
I lucked out a few years ago when my previous doctor left the hospital for a concierge service and was replaced by a really attentive doctor who -- wait for it -- listened to what was going on with me. Perhaps emboldened by that, when my symptoms got worse I let him know, and he suggested a colonoscopy, but it was my choice. When they got much worse, I felt like I could take him up on it. Great!
...Only I still managed to meet another doctor between the scheduling and the actual procedure who implied that my symptoms were indicative of something much less serious. That interaction was exhausting -- did I mention that I've been exhausted for a decade? -- to the point that I didn't bring up the ear pain that turned out to be an infection. Symptoms of that infection are still plaguing me, but I couldn't bear to stay in that office for one more minute.
When I saw my current doctor today, I brought my husband, more to keep me from going off about how his predecessors had failed me. But my husband couldn't restrain himself from pointing out to my doctor that this situation affected not just me but also our family. And...he's right. It has impacted every aspect of my family's life, however much I've tried to minimize the impact. For more than half of their life, my sons have seen me as someone whose energy levels are undependable (but who usually pushes through anyway). Managing this condition, completely in the dark, has sapped not just my energy but my mental faculties. We all obsess about food, but my ever changing list of things that I could and could not have was causing me to do mental gymnastics that no one could keep up with. And while no, sorry, I haven't been depressed, I realize I've seen everything through a pessimistic lens. Dealing with low-level chronic pain -- and exhaustion -- is going to do that to you.
Even with pain from the laparoscopic incision, I'm sleeping better than I have in years; no more waking up with a mild sense of panic in the middle of the night and not being able to go back to sleep for two hours, if at all. I am starting to feel like maybe, just maybe, this might be the beginning of a good chapter of my life. Let's see.
Deb in the City
