Wednesday, October 24, 2018

my anxious colon

In autumn 2016, we went to Ireland. It was a trip I never thought I'd make. I'm not a planner of world travel. Usually the most I plan is a trip to my sister's house or Target. But Dan is a planner, and he planned this vacation. 

It was the first time we traveled internationally, and also for any length of time. I was nervous about all kinds of things, but mostly I was terrified of not knowing where bathrooms are. 

If I go to the Mall of America, I know where the bathrooms are. The good ones are in Nordstrom's. You'd think Macy's bathrooms would be nice, but they're not the greatest. There's usually a weird smell. 

I knew where every restroom was from my house to my office; where to stop if it was an emergency - Target or Walmart, where there were lots of restrooms- and where to stop if I knew I could wait a few minutes - a gas station, for example. Before I went somewhere new, I'd scope out the situation online: the MN State Fair, museums, restaurants.  

Ireland was a mystery. 

Not just because of the miasma of mystery that swirls around the island, but because of the unknown WC. It was like going into a black hole. 

I found enough information online to soothe my anxious colon, and we went. 

To be honest the first few days were not awesome. They were awesome because we were in Ireland, and seeing things that we'd never seen, and drinking Guinness and loving it. But they were not awesome because when we landed, I spent about 2 hours in and out of the airport restrooms before we could head into Dublin itself. 

After my meds got my stomach under control, it was...amazing. 

*

I feel like a lot of my life is like this. There's times that my gut takes over my life, and I have to cancel plans, or leave early from an event. My family and friends know that if I'm in the bathroom for a while, not to worry...just text me, I bring my phone everywhere. 

That was a requirement after a work lunch one day, where I emerged after half an hour, sweating and pale after almost passing out in the loo. "Why didn't you text me?" my coworker asked, horrified. 

Part of me waits every day for the first twinge, the knowledge that I'm going to need to find a throne pretty soon. But part of me is also aware now that I have to leave the house, just go with it. 

*

In Ireland, the weather is drizzle, with some clear spots. In our time there, we had just a few hours of sunshine. It was what we expected. We donned rain coats, popped the hoods up, and pushed through wind to see the beauty of the country. 

In retrospect, that's how I live. It's how I have to live: put on a coat and walk out into the rain, hoping for the best. 

Wednesday, October 17, 2018

fall

Everything is about returning to the earth. 

Leaves, grass, sticks, stones. They're all drifting closer and closer, gravity pulling and tugging insistently. And people are the same. We struggle in the net: boarding planes, driving cars, riding bicycles. Hot air balloons, trapeze acts, sledding down steep hills. You name it, we're skimming over dirt, until whenever it is that we give in to gravity. 

I've been on a pile of medication for years now. It started out small: lisinopril, for high blood pressure that is apparently genetic, a small round peach colored tablet. Then for a time I added Lexapro and Wellbutrin to the pile; that was a hard time, to be frank. But with therapy for both me and Dan separately, and together, it was the best thing that could have happened. It was a reset button. 

Eventually I stopped taking both Lexapro and Wellbutrin. Why? Because I thought I was fine without them. (Note to self: Don't just stop taking stuff like that because you think it's a good idea. Remember the dizziness? Ugh.) 

Then it was just lisinopril and birth control, another peachy-pink tablet. Which was awesome, as it turns out, because with my PMDD, taking birth control round the clock means you have no menstrual cycle. Late 1990s Kim would have lost her shit over this - it goes against nature, etc - but late 2010s Kim was ELATED. 

We bought our house. I got sick. Really sick. Couldn't stay out of the bathroom sick, blood where it shouldn't be, kind of sick. Eventually after a colonoscopy and CT scan, I was diagnosed with Crohn's, an auto-immune disease in which your body thinks that your intestines are Alan Rickman in a Bruce Willis Christmas movie, and kicks your insides with steel-toed boots. 

Inflammation: it gets the job done.

That was painful; I remember cuddling with heating pads for days on end, hoping for it to just stop. There was more medication: little blue anti-spasmodics, bitter steroids. Those tapered off and I ended up with two new all the time medications: turquoise Imodium tablets and giant flesh-colored Balsalzide caplets. (Think Mike and Ike size.) 

So back up to 4 medications again. 

Last fall, when I had my blood clot, the birth control was nixed, and I started taking Xarelto: tiny, red, triangle shaped. Because of the inflammatory disease, I have to stay on it for life. Yay. New pill. 

And after that, my thyroid got all malignant, and now I'm on levothyroxione, the replacement hormone for what my thyroid no longer kicks out. Another small peach pill. 

I also take colorful gummy multivitamins, and extra vitamin D in small clear gels. And yellow sertraline, for anxiety. 

Needless to say, when we travel anywhere, I have a small backpack of rattling medications. The Balsalzide in particular is a hefty pill that I'm fairly certain is made using Rubbermaid technology, and I'm cut back to 6 a day from 9 a day previously. They have their own little container, since they won't fit in a standard pill box. 

I just refilled my two-weeks' worth of medications this morning. It takes about 20 minutes, and I have two bins of medication, since the Balsalzide caplets are so large. There are so many colors that it could be kind of pretty, in a modern-art kind of way, if they were just hues and tints and not small pieces of machinery. 

I'm forty-two. I have more medications than my parents combined. 

Sometimes I get tired of taking everything, of parsing out my days and weeks into little plastic partitions. Once, when I was seeing a new doctor, I griped about the number of pills I have to take. He replied with a chuckle: "What happens if you don't take the pills?" 

I know what happens. I don't leave the house. I lie down. I give up. I fall, the way October leaves are drifting now, and I become earth again. In their own way, they're keeping me from giving in to gravity and just laying down on the ground, these little stacks and piles of tablets and capsules. I lay on them the way others leap onto motorcycles or horses, and away I go. 

Thursday, October 04, 2018

cry havoc...

it's been forever since i posted anything here. so very, very much has happened...

we bought our house. moved in with our cats, henry and emma. traveled to Vegas, DC, Ireland, Belgium, Slovenia, Germany. now have 6 nieces and 4 nephews. dan's changed jobs a bunch. i was diagnosed with Crohn's disease. henry passed, other loved ones passed, friends and family moved about emotionally and physically.

this last year in particular has been crazy. we got back from Ocktoberfest in Munich last fall, i developed a DVT in my left leg; this was accompanied by a pulmonary embolism in each lung, too. will always be in recovery, it feels like, because i have to keep taking xarelto (an anti-coagulant) because having an inflammatory disease makes me more prone to blood clots.

anyway during that process, a CT of my chest revealed nodules on my thyroid. thus, the month of march went as follows:

Week 1: Laid off from work, effective May 7th.
Week 2: After 4 biopsies, confirmation that the nodules are cancer.
Week 3: Our 25th anniversary party at Big Wood Brewery, which has been planned for months. Three days before the party, we organize a wedding, since i'll be unemployed and full of cancer. We get hitched.

april was a month of scheduling: follow ups with various doctors, getting me onto dan's health insurance, counting down the days to surgery. we flew to Mexico City for my beloved Nathan's wedding to his beloved Carlos. my surgery was scheduled for May 7th, which was also the last day of my employment.

my entire thyroid was removed, along with 21 lymph nodes; of these, it was determined that 11 were actual malignant, so following surgery, i immediately went on the low/no iodine diet in preparation for radiation.

thyroid cancer, my endocrinologist maintains, is the easy cancer to have: you take out the thyroid and replace thyroid hormones with a pill. the surgery was not bad; i was out for 5 hours, and woke up to a neat incision that has healed quite nicely. you really have to look to see the scar, to be frank.

radiation consisted of me swallowing a little pill, and then driving home to stay away from Dan for a solid week. i couldn't go into the kitchen, had to use a separate bathroom. dan had to do all my cooking for me. but i'm officially cancer-free. or at least as cancer free as anyone can be, i suppose. i'm sure there's some straggler hanging about just waiting to be found again. who knows.

i started looking for work about a month ago now, when i was finally able to sit upright for any length of time without falling asleep. i'll never know what narcolepsy feels like, but dang, i came close: i could drink 3 cups of coffee and then immediately take a 4 hour nap. wake up, lunch, back to sleep until dinner...and then an early bedtime.

i probably should have started looking for work sooner, but recovery was more exhausting than i had anticipated. and now that i am looking, finally, i am once again in the boat i have always been in, the good ship All Grown Up but No Idea of What to Do With My Life.

i'm sure i'll figure it out. severance only lasts for a bit longer; i have an end date. it's hard to transition, but in reading through what i have written here, just today, i find that this last twelve months has been a lesson in change and acceptance, another in a long and unending line of such lessons.

chaos, i find, is the only constant.