Tomorrow marks two weeks since my surgery, with the second of those spent at home, continuing to recover while also adjusting to what is in many ways a very different life for our family. We still haven’t received the final pathology, so we’re not sure what, if any, additional treatment lies ahead. My post-op follow-up appointment in Cleveland is Tuesday 10/6, but we’re hoping it won’t take that long to find out.
A lot of people have asked what it’s been like living with my new ileostomy bag, and I never feel like I have a good answer. Probably because the answer is complicated. On the one hand, I’m trying to stay deeply focused on gratitude: The bag is only temporary, a blessing many people in my shoes don’t have, and no matter how you cut it, it’s basically saving my life.
Does the day-to-day suck a little bit? Yeah, absolutely — but like most people, I’d imagine, I’m willing to endure just about anything for 3-6 months if it saves my life. Oh, and there’s another, subtler silver lining: The pandemic, for all its horror, has made it such that I’m able to avoid many of the potentially awkward social-situation challenges (the office, large gatherings, public places, etc.) that would normally accompany such a significant lifestyle adjustment. I’m sure I’ll have my share of embarrassing bag moments in the months ahead, but the opportunities for disaster are certainly more limited.
Still, as much as I try to keep my mind focused on all the positives — and they really are overwhelming positives — I’m not always successful. Great insurance, a rockstar surgeon and care team, financial stability, an amazing superhuman wife I don’t deserve, a beautiful daughter who’s growing up daily before our eyes, a dad who drove 15 hours from Minnesota to pick me up from the hospital, an employer that has gone miles above and beyond in taking care of our family during this time — the list of blessings is never-ending. Even so, I’ll admit I still struggle a lot with feeling sorry for myself. Usually the pangs come when I’m emptying or changing my bag, or while I’m inching my way down the block for a struggle-ridden 15-minute walk, or in the middle of the night when my crampy belly and I are laying awake because in 34 years I never learned how to sleep on my back.
But my real battle against self-pity actually has far less to do with the bag itself; it’s driven, somewhat unexpectedly, by the inconvenience of being unable to lift anything heavier than 10 pounds. I never realized how much of taking care of Addie, who will turn two in a few weeks and is closing in on 35 pounds, is dependent on picking her up and setting her down. And thus, despite my steadily increasing energy levels and appetite to help, I’m virtually incapable of watching her without assistance, only increasing the already enormous burden my surgery and recovery have placed on Alexis. Not to mention that I’m sure Addie is wondering why (vague explanations of my tummy and butt ouchies notwithstanding) a big part of our physical connection is suddenly gone. We’re having beautiful fall weather here in Columbus, and all I want to do is run around the park with her and toss her in the air to make her laugh hysterically.
I wish I could simply report, “body healing; mind strong.” But while that wouldn’t be completely untruthful, it’s certainly not the whole story. I don’t like admitting to mental and emotional struggle, but I’m committed to keeping this account of my experience brutally honest. If there’s anything someone might take away from this part of my story, I’d hope it’s that sometimes you can know the way you want to think, the way you should think, but you can’t quite get your mind there all the time — and that’s fine. I’m learning to be fine with it, learning to go easier on myself when I’m having a rough patch.
Like I said earlier, my prevailing thoughts right now are around gratitude, perspective, and happiness. This won’t be the fall season our family envisioned, but it can still be a really great one. And because of my incredible good fortune and amazing doctors and nurses, it will pave the way for countless even happier seasons to come.
And hey — at least I’m having a better fall than the Vikings.