In case you missed it, or if you wanted a reminder, after my appointment with the colorectal surgeon two plus weeks ago, I was given three options for the surgery: cut out the tumor, remove the colon and live with a permanent ostomy bag, and remove the colon and live with a J-Pouch.
I didn't take the decision lightly, as one shouldn't. The complicating factor in the decision was the diagnosis of Lynch Syndrome, a genetic disorder that tends to lead to a hight rate of colorectal cancers. It's the reason I got the disease so (relatively) young, and the stinger is that just because this cancer was taken away, doesn't really reduce the chance that another tumor would come back in the colorectal region.
So, I weighed the options and the drawbacks of all three options, talked with a few people who had the different surgeries done to get their experiences, and weighed, basically, which inconvenience I was willing to live with for the rest of my life. It wasn't easy by any means.
I'm going to have my colon removed and live with a permanent ostomy.
Feels good to say that out in the open.
It came down to this: I didn't want to have the shadow of a return of cancer be any bigger than it had to. I'm still at risk, as is everyone, and the Lynch Syndrome does lends itself to a greater risk of cancer in other organs. That risk is minimal, though, when compared to the colorectal risk. While the doctors wouldn't guarantee that it would return in the colon, the chances it would are higher than the bet is worth. That, combined with the fact that every year I'd have to go through the process of having a colonoscopy done, all for the idea that I'd still have less control over my bowels just didn't add up for me.
So why not the J-Pouch? I do admit that option was intriguing. I'd essentially get the safety of no colorectal cancer risk combined with not having to deal with having an ostomy bag. The problem there, for me, was the frequency with which I'd have to expect to find a restroom. The lack of a controlling organ for things would give me very little time to find said facility, and I was going to be guaranteed to make multiple trips a day.
With the ostomy bag, once I get used to it, I'll be able to plan things a lot more, and since it'll be permanent instead of temporary the surgeon can do the operation such that it's "better" for it than the temporary one he'd have to do while I was recovering. I'll also not have to worry about all of the prep and work that goes into a colonoscopy every...single...year. It keeps me from having to deal with a second surgery, as well, be it to reconnect things or remove the colon later.
So that's that. The decision is made. On Tuesday, I have an appointment with the nurse who will teach me about the ostomy, as well as all the pre-admission testing prior to the surgery. I also have my pre-surgery instructions, which is going to send my colon out with a bang. Basically, it's the colonoscopy prep, right down to the clear fluids. Simply thinking of having to do that again almost seems to help confirm that I'm making the proper decision. The good news is that after that appointment on Tuesday, I'm back on carbs again to get my weight up. How are we celebrating?
Chicken and Waffles at Loretta's Last Call. Hey, if you can carb, why not go all out?
I will say, I do understand the craze to get carbs out of one's life. Over the past two and a half weeks, I'm down about 11 pounds and have discovered a few different things that I can incorporate into daily life once things are back...closer to normal. The big thing is coffee. I had relished the fact that I could drink sodas again once the metallic taste and cold neuropathy was gone, meaning I had dropped the coffee "habit" I had picked up during chemo. These past couple of weeks I've gone back to a morning cup with half and half to completely eliminate sugar again. I will say, I'm starting to understand the habit from folks. Once I can put a little more sugar in the stuff, I might be incorporating more of it in my life instead of sodas, which is a good thing. I've also found that the cauliflower rice stir fry from Trader Joe's is pretty good, and that roasted brussel sprouts are pretty good.
Will I stick to the carb free life once I'm out of surgery and able to eat food? Nah. Love them too much. But, maybe I'll be a little more aware of the amount I'm putting in.
Anyway, after the surgery I'll spend a few days in the hospital and then come on home to get used to life with the bag. After a period of recovery, likely as short as ten days, I'll be able to go back to work since I have the ability to work from home. Ideally, by the time June is over I'll be back to a daily routine of living life cancer-free.
Now the somewhat awkward part of the blog: asking for help.
The good news about where I work is that they take care of you, paycheck wise, during this thanks to the generous time off policy and short-term disability insurance. The bad news is that being laid up with the surgery comes with a few drawbacks that'll tap resources: that I'm the only one who can legally drive out of the two of us, and that Kathleen also has to take time off work in order to make sure I'm taken care of. If you're asking yourself "how can I help?" well, the GoFundMe that the absolutely wonderful Adam Pohl set up is still going. The help from when this first was established was amazing in allowing Kathleen to take more time off to help me recover, as well as take care of the expensive that inevitably pop up during this. It helped take away a lot of worries, and so if you live a great distance away and want to help, this is an easy way to do so.
What unexpected expenses? Laundry, for one, and ordering groceries instead of going out to buy them ourselves. It may also be a while before we can cook and eat the same meal, meaning that grocery bill will be higher than expected. That's just a couple of things, and I'm sure there are dozens that I can't think of right now. So, if you want to help, that, frankly, is going to be the easiest and best way.
OK, enough begging. Wish me luck for my surgery, and I'll make sure I have access to the laptop during the hospital stay to keep you updated. In the meantime, Go Canes!
