Monday, May 9, 2022

When Gaslighting Equals Cancer

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

Wednesday, March 2, 2022

The questionable wisdom of the sleep-deprived

Some random thoughts as I deal with the second day this week of four hours of sleep (though, mercifully, not consecutive):

  • Boston's hours might give you the impression that we're nothing more than a showy bedroom community. We're most reliably available between the hours of 8 AM and 8 PM, though only on weekdays. Saturdays, so it has been decreed, don't seem to start until 9 AM, and Sundays don't start until 10 AM if you're lucky. Don't believe me? Try finding a good place to get a non-caffeinated beverage while walking around on a Sunday morning before 8 AM. Never have I missed New York City so much.
  • Given the number of ways in which women who aren't white (I loathe "of color" in general -- by which standard? Right, we all know. So let's just cut to the chase and say "not white".) are told that they aren't good enough, the wonder isn't that we have panic attacks, it's that we don't have them every single day.
  • No one has made me wish for the existence of Hell this much since Bashar al-Assad, the Butcher of Syria, but Vladimir Putin should get his own ring within the worst ring. But also, everyone who only cares about Syria now because of what's happening in Ukraine, if you're under the age of 25, what is the matter with you?
  • I searched like a demon to find a history book I could use for my older-middle school/younger-high school students that would be both age-appropriate and not be Eurocentric. I failed to find anything comprehensive, so we read shorter books on other topics and used a survey textbook for what would have been their first year of high school. My husband and I are now reading Tamim Ansary's Destiny Disrupted, which is explicitly from the point of view of the Islamic world. Great...but not perfect. How I wish there was a version of Power and Plenty that covered cultural/political milestones and/or was available for older teens.
  • However sleepy Boston is, I pine for my walks, especially as various family members' anxiety makes those difficult to get. It's easy for me to sink into bitterness (especially when I'm sleep-deprived), but I realized a few days ago how much I will miss having children who want me around. Boston will be there (I mean, I think...), so long, daily walks can wait. In the meantime, I can workout at home.
  • Much as I've walked away from my identity as a foodie, walking into pastry shops to buy things for the members of my family who can eat wheat got to me. I've been baking a number of things from Erin McKenna's cookbooks. Brownies are still my favorite, but my husband likes cupcakes (both of us can live without chocolate chip cookies, although he has a soft spot for oatmeal cookies -- no accounting for taste). I'm loving pumpernickel bread all over again (obviously, best with vegan cream cheese and strawberry jam, but you knew that), but I really want to try challah because it would be nice to have that for Fridays again. Because really this whole baking jag was set off by my desire to avoid paying $39 for a challah (plus shipping). Now, can anyone tell me where I can find a good pan?
  • How I wish I could drink tea again. (Did I mention that I'm sleep-deprived?)

Deb in the City