Anxiety, Achalasia, and Lynch Syndrome

Three years ago – while dealing with my cancer diagnosis – I was also diagnosed with achalasia. Essentially an esophagus disorder that causes difficulty swallowing either due to motility issues (food not going the right direction at the right times), stricture (tightening/narrowing of the esophagus), issues with the esophageal sphincters, or some combination of the three. The doctor who conducted my first barium swallow described it as someone squeezing the tube of toothpaste in the middle instead of from the end the way it should be done. 777789219

While waiting to go into surgery for my colon resection, I asked my surgeon – someone I’d grown to trust quite a bit in a short amount of time – if he thought I should try the balloon dilation or go ahead and have the Heller myotomy. The former is a procedure where a balloon is inflated in the esophagus, stretching it and (hopefully) widening the esophagus where it has tightened to allow food to pass more easily.  The latter is an overnight hospital visit and involves cutting the lower esophageal sphincter (LES). I didn’t like the sound of either.  He strongly recommended I start with the balloon.

I had the balloon dilation done while I was on leave from my colon surgery. It was similar to going in for an endoscopy, I was just a little more sore after. Once the soreness subsided, I felt some relief – food was going down more easily again, I was throwing up less. But the change only seemed to last for a month or two. I started getting the chest pains again, food was getting stuck more often. But after recovering from the resection surgery, the last thing I wanted was another hospital visit. I decided to put off surgery for as long as possible.

I’m a fairly self aware person.  People have actually picked on me for how self aware I am at times – I know where dang near every freckle is on my body, I am rarely blindsided by illness. Perhaps I’m a bit obsessive/compulsive. When I ask someone how they got a scratch and they don’t even realize they have one, it confuses me – I can count on one hand how many times I’ve found an injury (bruise, scrape, etc) and not known its origin. Maybe it’s a touch of paranoia – not sure how or when it started, but I’ve always been this way.

Therefore, when it came to my own body turning against me twice in one year, I had to ask myself what I could do differently.  I went to visit a psychiatrist to discuss the possibility that my swallowing issues were caused – or at the very least, exacerbated by – stress and anxiety. I started noticing triggers – both psychological and physical – and planned my meals around them or avoided them when possible. Ice cold water causes physical stress and makes me lock down, for example – drinking anything too cold with a meal is a bad idea most days. Certain voices put me on edge. I tend to internalize my stress.

The psychiatrist prescribed dissolvable Xanax tabs. She suggested I put one on my tongue just before a meal. The first time or two, I was amazed. I could feel myself relax and I could eat!  But she told me this was a temporary solution – she wouldn’t be writing me prescriptions for Xanax long term. I also didn’t want to take them long term, so that was not an issue to me.  Instead, I tried to focus on how it felt to really relax my body the way the tabs helped me to do.  I saved the tablets for really bad days – anxiety-ridden days when my chest would hurt so badly that  nothing else would do.

After the resection surgery, my doctor tested me for genetic mutations – polyps and colon cancer in your 20s and 30s tends to be a red flag for mutation. I tested positive for a mutation of the MSH6 gene – one of the 5 gene mutations associated with Lynch Syndrome.  I’ll talk more in depth on this in a future post, but for now I will say that it carries a 70+% (above the general population) increased risk for colon and uterine cancers.  I had a full hysterectomy in July 2015 to remove that cancer risk and now go for a yearly colonoscopy and biennial endoscopy.

I bring it up now because I’m having a rough week. I’ve been tossing my cookies almost daily. I wasn’t sure why at first, but with a little introspection, it hit me: Monday is my colonoscopy/endoscopy.  I’m thankful my doctor scheduled it pretty quickly and I didn’t have to feel it looming over my head for weeks on end. Every year I feel I’m emotionally holding my breath from the moment I schedule to the moment he comes in and tells me how it went.  Each year they’ve found polyps. Last year my doctor found them on the opposite end from where they’d been found previously. He mentioned that I may one day want to consider a colectomy (colon removal).  That’s something I can’t even fathom right now.

I’m full of hope this year. I see some positive changes on the horizon, but I can’t even attempt making them a reality until I have a clean bill of health in my hand for another year. So while I’m full of hope, I am also ridden with anxiety. The “What If”s pervade my quiet moments and I find myself subconsciously adopting a holding pattern in almost every aspect of my life – I have to push myself to remember that yearly testing has been nothing but beneficial for me so far. An ounce of prevention and all that…

As someone who is painfully self aware, I almost look forward to drinking that horrible liquid and then going in for my yearly medically induced nap. Not knowing scares me infinitely more.

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