Continued from a previous post…
Surgery up next! On June 6th I had my first scans since diagnosis. I know, you’d think they would scan after radiation but in my case, they didn’t — I guess because my protocol called for all phases (rad, chemo and surgery) without deviation.
I got great news that day, there was NO EVIDENCE of DISEASE (NED) — NO CANCER on the scans!!! This was the best birthday present I could get (my bday is June 7th)! Radiation and chemo had done their job! But, I wasn’t out of the woods yet. I still had to have surgery as insurance to improve my chances of not having a recurrence. Rectal cancer has a higher incidence of recurrence and so this was something I was willing to do. And, just because the scans showed no evidence of Arnold (the tumor) didn’t mean there wasn’t microscopic cancer still there. This meant to really be “cancer free”, my pathology from surgery (from the specimens removed) would also have to come back clean.
Surgery 1
A week later, on June 13th, 2022, I had an ultra-low anterior resection (ULAR) which my badass female (mayo-trained*) surgeon performed with the help of her robot. She removed all of my sigmoid colon, the majority of my rectum (leaving only a baby rectum,”Baby R” 🍼) and 14 lymph nodes (just to be safe). At that time a temporary loop ileostomy (“Squirt”) was placed, and I pooped out of a hole into a bag next to my belly button for the next 10 weeks. Don’t listen to Matthew Perry, Ostomies are life-saving measures and without mine, the risk of infection or damage to my new semicolon would have been very high. True to my unicorn self though, my ileostomy was very close to my belly button, which is unusual (it all depends on where your ileum is) and presented challenges. 🦄 So while I’m grateful for it, I’m also thankful it was temporary. There will be a future post on the care and feeding of difficult ostomies!
On June 15th I got the news that my surgery pathology was all clear! I had no cancer in my body! 💃🏼💃🏼💃🏼 I cried tears of relief and joy in the arms of my surgeon who was truly a touchstone for me during my journey, along with Doc who as my care partner was like an angel without wings. But things weren’t done yet, I had one more surgery to go!
Surgery 2
10 weeks later, On August 22nd, my ileostomy was reversed, my port was removed (this is such a momentous thing for a cancer patient) and four days later I went home with nothing attached to my body except for a temporary drain. I was elated! I was even more elated once I got rid of the drain! 💃🏼
Managing LARS
Now the real work of adjusting would begin. You see when your colon has been on vacay without you for 10 weeks and you no longer have the anatomy to store poop and have lost the parts that signal it’s time to poop, this is quite the shit show! The shit show is called LARS (Lower Anterior Resection Syndrome) and all of us with semicolons have it to one degree or another. For some it is temporary and for others more permanent. It takes time for your colon to learn how to do the tasks of the missing parts but in theory, it is possible for it to stretch (surgeries cause narrowing), learn to store poop again, re-learn absorbing water to make stool, know the difference between a fart and a shart, and even let you know when you have to go vs. feeling like you have to go all the time. Butt, it takes time.
Managing LARS includes many things from changes in diet, including or excluding fiber (depending on your situation), physical therapy for the pelvic floor, sometimes biofeedback, eating small meals more frequently, chewing food more times than a cow with a cud, prophylaxing with Imodium, popping probiotics like candy, the use of the occasional or more often diaper (Thank you Always and Depends for making sexy ones), and the list goes on.
Where am I on the LARS spectrum?
At just 7 months post-surgery, I take ½ multi-symptom Imodium AM and ½ PM. I eat very small meals 4–6 times a day or every couple of hours. My average times in the bathroom on a good day is 5–6 times — more in the morning — we call this clustering — where you go a few milk duds worth several times in a row. On a bad day more than that, and without Imodium, twice that of a bad day. I opt for the Imodium so I can eat a lot of fiber. Eating a variety of fruits, vegetables and grains can also improve your microbiome, which after CRC treatment and surgeries like this is HUGE! (Microbiome manages everything from good digestion to gut health, improves immunity and so much more). I am still experimenting but I aim for at least 25 grams a day of mixed fiber — soluble fiber makes it soft and easy to pass, and insoluble fiber can make it faster but bulks it up in theory, for less clustering. Some days this is like balancing on a wire over the Grand Canyon! One day I might try to go off the Imodium - no one says I have to - but when I did so at three months it was not pretty! 💩 🚽 💩 🚽 💩 🚽 I have been lucky that I have never had an accident in bed at night and while I’ve had a couple of near misses in the daytime, I’ve got a pretty good ability to hold itfor at least a short time. Thank you PT! Except for gas, lookout people! 💨 😂
I’m not going to lie, I also travel everywhere with my toilet. 🚽 I am fortunate to have a rolling toilet in our RV Van, “No Dick Van Dyke” (which we were taking pretty much everywhere) and I recently outfitted my SUV with a camping port-a-potty for incognito pooping on the go! 💩 Not kidding! 😂
I also recognize that my perspective may be altered because I am not on someone else’s bathroom schedule (i.e., I am semi-retired and my work is 99% virtual so I can go 💩 when I want to). The idea of being on a long plane ride or at jury duty is fodder for nightmares, though. Thankfully a doctor's note would get me out of jury duty and I could not eat and take extra Imodium for a plane.
However, due to my still immunocompromised status, I won’t likely be on a plane anytime soon. In case you are wondering, yes, we are still masking and being careful as it can take 2 years (more or less) for my immunity to get back to 100% after treatment, and as a colorectal cancer survivor, my chances of having a more severe case of Covid (and other viruses) are higher. We basically went from Covid to Cancer so wearing masks has become just a normal part of our lives and not a big deal most of the time.
And that’s another thing. The mental and physical side-effects from cancer treatment can last for years after the treatment, so when your cancer survivor friend says she’s tired or her feet are bothering her, or in my case, if I tell you “I have to go finish a sentence.” 🚽 recognize that life after cancer is never the same as it was before it. Thus, my story doesn’t end here. In fact, it is just beginning!
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