I’m currently sitting on my brother’s couch in Solon, Iowa, pooping out of my stomach, bleeding into a clear-plastic grenade; my butt-hole sewn completely shut… never in a million years would I be thankful for this current situation.
I think it was Steven Segal that said, ‘the anticipation of death is scarier than death itself.’ Despite being a planned 6-hour mega-surgery where I basically would be gutted, and put back together again, I remember being calmer than I thought I would be that morning. Perhaps it was because I was finally ridding my body of cancer or maybe it was the hands of angels comforting me; regardless, I met the day with a confidence in my surgeon and surgical team that put me unusually at ease for the seriousness of my procedure.
I finished up my day-long colon-blow like a boss (I can’t lie, these dreaded preps are becoming second nature), and completed my special anti-bacterial soap shower at 4:30 a.m. so I could be at the hospital for my 5:30 a.m. date with ‘Bruce the happy shaver’ at least that’s what we called him.
I was shorn from my neck to my knees-yes, including all the nooks and crannies in that area- as well as my left hand for no other reason than Bruce wasn’t done with the narrative he was telling us and needed something to shave to justify his long-windedness. Then, Kellen, my baller-of-an-anesthesiologist got me rolling, mentioning something about having Rice Krispies under my skin as he got my IV going. After hugs to my family and reassuring them I was alright, Kellen rolled me into the sterility of the surgery room. I faintly remember meeting a handful of other people scurrying around the numerous spider-like machines and computers of the fluorescently-lit room. I reminded everyone to be gentle and laid my head down, succumbing to the increasing weight of drunkenness of the sedation drugs now being pumped into my veins.
From day one of this adventure, we knew surgery was going to be the most intricate-even Dr. Byrn himself described it as ‘a surgery of millimeters.’ The goal was two-fold, 1) remove the cancerous tumor and margins (the ‘extra’ borders around the tumor which makes sure it was taken in its entirety), and 2) have as much skin left over so that my colon can be reattached to my anal structures-putting Humpty Dumpty back together again, sort of thing. We also knew this may or may not happen depending on a variety of factors that wouldn’t be known until Dr. Byrn was in there, so Plan B was to remove my rectum, lymph nodes, anal structure; sew up my butt and create a permanent colostomy on my stomach. It was 50/50… neither a great situation, but a decision I had the confidence in Dr. Byrn to make-if I could be reattached, he could do it… if not, he could do it right.
“Hey, Jon. How are you feeling?”
“Ah…” <cough> “How’d I do in there?”
“Well, you’ve got a permanent bag, but it was a successful cancer surgery.”
I can’t remember who I was speaking with in the recovery room, but all I heard was ‘permanent’ and ‘successful,’ which is all that I wanted to know.
Apparently, this is what I gathered happened(ish): Dr. Byrn, utilizing a robot and the laproscopic technique, entered my lower stomach through three ‘poke holes.’ He got to my tumor location saw that the tumor had a great reaction to the radiation, to the point that it looked like a scar. Then he identified the separated the muscle layers in which the tumor was involved with-the rectal muscle wall and inner sphincter muscle… which has a real name but I can’t think of it right now. If Plan A was to take place, these two muscles would separate cleanly, meaning the tumor had stayed only in the rectal muscle tissue. However, when Dr. Byrn manipulated them, the two muscles didn’t separate; the tumor had grown into that second layer. In other words, it had to be taken out… a decision my body made, not the Dr.
Once that was realized, Plan B was set into motion. Officially an Abdominoperineal Resection or APR, to me and the rest, a Butthole removal surgery.
I woke up with a poke hole just above my belly button, about three inches directly right of that, and another three inches west-northwest of my belly button. To the left and just below is my new stoma, the opening in which my colon is connected to my stomach to release waste into the newly attached colostomy bag. I have a drain tube connected to a clear grenade-like container opposite Stoma. Additionally, I have about a three inch incision in my backside, which, when healed, will give me the Ken-Doll butt I’ve always dreamed of.
The next four days I got some of the best care a butt-less cancer patient could ask for. My family took shifts in my room, my good friend Nick and his wife Hollie stopped in, and when they weren’t getting things just out of my limited reach or shuffling around the floor navigating my multiple IV’s, Amanda, Janice, Chris, Nicole, Amber, and the rest of the nursing crew were absolutely awesome. I was up walking the day after surgery, and even received the now coveted “Walks like a Champ” medal from my nurse… made out of a Starbucks cup holder… but I’m pretty stoked about it…
Recovery seemed slow, but constant. I made it a point to walk as much as I was able, drink as much as I could, and stay on top of my pain medication. That seemed to be a good plan. I was released four days after surgery-we anticipated 6 to 8 days- and it seemed that everyday there was a tangible recovery benchmark that I made; either it was pulling out my catheter, moving from IV pain drip to pills, pulling the IV’s completely, learning how to change my colostomy bag, or taking a shower, they were all baby steps of encouragement in the marathon that will be this recovery.
Then I got to watch my Northern Iowa football team beat #1 NDSU in football on Saturday evening with Nick… a cool hospital memory.
That, more or less, brings me back to this couch. It’s quite right now, Jeff just left to take his kids to school. It’s shaping up that I’m going to be here until the beginning of December when my initial follow-up appointments and home-health nursing visits are completed. Jeff, Jenny, and the kids have been awesome, and I’m lucky I can spend some time with kiddos while they’re little, even if it means not touching Uncle Jon Jon for a couple weeks.
So, as the first snows start to dance on the winds and the cold temperatures of a new winter season begin, I too, am embarking on a shift in my world… although mine involves a bit more pooping out of my stomach.
Maryruth (Strattner) Stubbs
January 16, 2015
Jon – so happy your surgery was a success, I loved reading your blog and seeing your pictures. As an ICU RN I would have made you a better medal (I mean no disrespect;) wishing you a speedy recovery and sending love
Maryruth
Amie Quist
November 17, 2014
Smiling and laughing at the same time. You are amazing and I’m so happy for your successful surgery.
Anna Dockter
November 15, 2014
Hope everything is going well for you — best of luck and lots of good wishes being sent your way from Butte, MT
Keesha
November 14, 2014
I love reading your blog & your beautiful attitude fighting this!! I’m getting ready to head into treatments! So glad surgery went good for you! Love how you say ken doll butt!! I got the chest of a 10 year old boy!! Who would know we both be in this place!!?? Continue the good fight my friend, as I will too!
Tammy garrison
November 14, 2014
You are an inspiration ❤️ thanks for sharing your amazing story… Glad your doing ok:)
Pete Holm
November 14, 2014
Jon
Happy to hear that you enjoy your butt like Ken, he will also be happy to know that someone has one just like him. You are awesome and the positive State of Mind about you is to say the least. Continue to progress and Take Care. Coach Holm (Pete)
Dr. Okrusch
November 14, 2014
Much love Wick. See you when we see you. Hopefully sooner than later.
Dave Shaw
November 14, 2014
Jon,
Thanks for sharing your experiences. We are thinking of you.
D. Shaw Family
Lisa Sullivan
November 14, 2014
LOVE reading your blog! They make me laugh and they make me cry. I wish you a fast and comfortable recovery. I admire your strength and amazing positive spirit. If only we had more people in the world like you! Sending lots of love and positive healing vibes. ❤
Rose Brock
November 14, 2014
Thanks for sharing your journey. ..your courage inspires me to whine a little less. Continuing to hold you all in prayers.
Helen Schaal
November 14, 2014
OMG I love reading your posts! Especially this one…your surgery was successful, you are recovering quickly and the humor is wonderful. We are so glad you are on the mend!
Saskia J.
November 13, 2014
Hope the healing is going well!
Biff
November 13, 2014
John ….Sheila and I can’t stop laughing….
Michele Steele
November 13, 2014
🙂 thank you for sharing with so many of us. You’re an inspiration. The Barbie Ken butt made me giggle. Keep up the good humor 🙂 god bless!
Rikki Rowe
November 13, 2014
I love your attitude, blog posts & Ken doll butt! I’m so happy the surgery is over & that it was a success!!! Have I mentioned that I love your attitude?! I do. Your optimism is contagious my friend. You & your outlook on life makes the world a better place. Period. Love you tons. Xoxo
Jessi Manchester
November 13, 2014
“…which, when healed, will give me the Ken-Doll butt I’ve always dreamed of.”
Hahaha! Jon, your humor and good attitude continue to shine while I’ve kept up with your blog. I believe it will make all the difference in the world with your recovery. It is good to hear that your surgery was successful! Wishing for a fast and peaceful recovery! 🙂
Jeremy Holm
November 13, 2014
John,
My dad gave me your link, but following you for the last 3-4 posts. Great to see that you are doing well. Working in healthcare, I have seen a lot, and the #1 thing that positively impacts a great recovery is a positive state of mind!! I have seen some pretty crazy shit during my years working in the ICU. No matter what happens, surgery was successful, and it beats waking up dead! Say hi to Jeff and James.