When last we spoke, I had just finished radiation and I was about to go and celebrate being done with the treatments by going to Las Vegas and toast the impending marriage of a good man. I also knew some scans were coming up, and a discussion was going to be had about the surgery.
So, I'll save time on one place: Vegas. The trip was everything I could have asked for and more. I had a blast, it was great seeing old friends and making new ones, and the way the guys bent over backwards to help me out in unexpected ways won't be forgotten. I got to experience March Madness at a sports book, treat myself to a massage and relaxing time at Qua spa, sit down at the poker table, have some great steak, and spend a ton of time with people. The topic of my cancer came up a couple of times, but it was totally my choice to bring it up, and it was empowering to talk about it in the open. I don't have enough thanks in the world for everyone during that trip. As it is, I still have pieces of the trip with me thanks to a couple of great gifts and a $20 bet on the Carolina Hurricanes to take the Stanley Cup. I got some good odds.
— Al Hood (@albhood) March 25, 2019
25-1 when Tampa was still in it. Now? They probably still won't win it, but damn if it isn't looking like a good value bet.
Anyway, Vegas was great. A couple of weeks after I got back, it was time to go through the scan process. Let me tell you, it was a lot of fun using that enema again to make sure they could see everything. It was also great getting shot with a ton of glucose to slow the bowels down, and it was really fun drinking a quarter of disgusting ionized water. Needless to say, I took that full day off because my body was wrecked once it was done.
The plan was to go over the scans during the sit down with the team, but because I'm registered on a patient site where all labs and tests done are visible, I was able to see the results prior to sitting down. In summary: again nothing has spread beyond the original tumor, and the tumor itself has shrunk to the point where it's "no more visualized" on the scan. It's not gone, mind you. But going into last Wednesday's meeting, I knew that everything we had done had worked about as well as can be hoped.
Thus, I was actually hopeful going into Wednesday. I knew the news would be good and thus we'd talk about what to expect with the surgery, set a date, and that would be that.
Yeah, it was a little more complicated than that.
It started with me being introduced to the head of colorectal surgery, a different man than who I originally met. Turns out the surgeon I thought would be doing the procedure is leaving the hospital and thus, I get his boss. Cool. The next step, though, was to talk about my options for the surgery.
Wait...options?
The visit turned into a discussion of my genetics. What I knew was that I had had something show up in my genetic testing that leant itself to me getting this form of cancer. It never really changed my treatment so I didn't give Lynch Syndrome much of a thought. This surgeon, however, brought up that because of this Syndrome, the "simple" surgery that we had been aiming for, where they cut out the tumor, sew the ends of the rectum together and eventually full function is restored may not be the best option for me.
Basically, because of the Lynch Syndrome, there is a chance that a new tumor could come back in the colon, and better odds than someone without Lynch. Thus, if I choose the "preserve the rectum" option, I'm taking a bet that there won't be any new cancer in that area and somewhere down the line I have to go through all of this again. Of course, if another tumor comes, there's no guarantee my body will respond as well to the treatments as it did this time, and I would be looking at a no choice surgery to remove my colon.
So, I have three options (one had two options in it but we won't talk about that because we all agreed that was the worst option and the surgeon strongly recommended against it).
1) Preservation of the rectum. The positives of this move is that it makes my body the most "normal." I'd have the temporary ostomy bag, and then after two months another procedure to reconnect the colon and the rectum. Once that's done, I basically live close to a normal life, with maybe a few extra visits to the bathroom.
The negatives are that I'd be having two surgeries, if nothing else it'd be an inconvenience. I'd also be starting at having a colonoscopy every year for the rest of my life. No ifs ands or buts about that, because of the Lynch Syndrome we'd have to be vigilant about catching any growth before it could turn into anything. There's also the small chance that the repair could leak or fail, which wouldn't exactly be a good thing for waste to get loose in your system. Also, there's an unpredictable amount of trips to the bathroom that may happen.
2) The full removal of the colon part 1. The positives of this one is that I would only be looking at one surgery, albeit a much longer one. As I wouldn't have a colon, I'd have a zero chance of cancer in said colon ever happening again. That also means no colonoscopies, and no unpredictability about going to the bathroom. In fact, I basically could plan those trips.
The reason I can plan those trips? That's the negative, instead of a temporary ostomy bag, it would be permanent. I'd live my life with that bag on my side, and the extra inconvenience that it brings to me.
3) The full removal of the colon with the insertion of a J-Pouch. This option is trying to attempt to get the best of both worlds. Again, the colon is removed, but in it's place is a plastic pouch. I'd still have a temporary ostomy bag while it settles, but then this pouch would be attached to the small intestine and normal function resumes. The positives of this one are basically the same as the first option. I'd live life without the bag, but the bonus here is that I'd remove the chance of another tumor in that are of the body because, again, the colon is gone. No colonoscopies, and one less thing to worry about.
The negatives are a mix of the two as well. First off, again, there'd be two surgeries because you have to place the pouch in, then you have to connect it once it's set. There's a foreign object in your body, so there's always a chance of infection. There's also the bathroom trips. Simply put, I can expect 5-7 trips to the bathroom a day with this thing because the filtering mechanism is gone. That could create a major inconvenience in life if I need to go and there's no where convenient to go. This is also a concern of the first option, but it's for sure an issue here.
As you can see, it's a lot to take in. I had been proceeding under the assumption that either we could get the tumor to shrink enough to preserve rectal function, or that it would fail and we'd have to go with the full removal. Basically, I wouldn't have to make a choice. This whole time, the thing that's been easy is that I've been told what to do. Technically I had a choice, could have gotten a second opinion, but really I just did what I was told. Now? I, and really I alone, can choose where to go.
It's been stressed to me by both the surgeon and oncologist there isn't a "wrong" choice here. If there were a right or wrong choice, they'd tell me I'd have to do one or the other. In a weird way, because everything worked as well as it do, I face this decision.
I'm not going to lie, it's frustrating to have this laid on me at this point without full prep. Yes, I knew a full removal was a possibility, but it was ultimately presented at the time as something that would be an either/or situation. Instead I have to tell the doctors what my preference is.
And the fun wasn't done yet.
It turns out for the surgery prep, the doctor wanted me to lose weight in a hurry to help the process, and then the week before start to gain it back. How can I lose weight in a hurry?
Good-bye Carbs.
That's right, no bread, no pasta, no soda. He essentially wanted me to do a Keto thing for three weeks to let a decent amount melt away, and then with a week to go I can reintroduce them back so that it can come back and be in recovery before we do the surgery.
I'm not going to lie, this maybe hit me harder than the choices, and put all together, it's been overwhelming. I had been able to enjoy sodas again since the cold sensitivity left, and I've always been about those carbs. Generally, when someone goes on one of these plans they do it willingly, and plan on a date to start. I had to go into this without any planning, and immediately change my diet. Do you know exactly how many things have carbs and sugars in them? This hit me like a ton of bricks yesterday when I went to the store after doing laundry to try and find a quick snack and just...couldn't....find...anything. I've had to give up sugar in the sweet tea, and my meat and cheese consumption has really jumped up.
I mean, I had to watch Avengers:Endgame without any popcorn at all. Going to a movie and not eating popcorn is torture. Absolute torture. Luckily the movie kicked a ton of ass so it didn't matter, but we plan on seeing it again next weekend and I'll have to figure out what I can snack on.
The good news is that a date is set: May 21st. So, for two and a half more weeks I'll try to avoid all the grain and sugar carbs (fiber carbs are OK because of their function), and try to not get sick of meat and cheese. I'll also keep drinking the lemon-infused unsweet tea wishing that it had at least a little sugar in it, as well as avoid ice cream.
Also during that time I'll be making my decision and letting the docs know. I have until a couple of days before the surgery, but I don't want this to hang in the air. Anyone who has an opinion can, of course, share it with me. I think I know where I'm leaning but I want to let it marinate just a little before I lock it in.
In the meantime I'll do what I can to not let this all get to me. I honestly can say this is the most down I've felt because of the forced diet and weight of the decision. It's frustrating to get so close to the finish line and have a ton of stuff shoved on you. It sucks, as does having cancer in the first place. At least the end is near, whatever that end is.
As you can see, it's a lot to take in. I had been proceeding under the assumption that either we could get the tumor to shrink enough to preserve rectal function, or that it would fail and we'd have to go with the full removal. Basically, I wouldn't have to make a choice. This whole time, the thing that's been easy is that I've been told what to do. Technically I had a choice, could have gotten a second opinion, but really I just did what I was told. Now? I, and really I alone, can choose where to go.
It's been stressed to me by both the surgeon and oncologist there isn't a "wrong" choice here. If there were a right or wrong choice, they'd tell me I'd have to do one or the other. In a weird way, because everything worked as well as it do, I face this decision.
I'm not going to lie, it's frustrating to have this laid on me at this point without full prep. Yes, I knew a full removal was a possibility, but it was ultimately presented at the time as something that would be an either/or situation. Instead I have to tell the doctors what my preference is.
And the fun wasn't done yet.
It turns out for the surgery prep, the doctor wanted me to lose weight in a hurry to help the process, and then the week before start to gain it back. How can I lose weight in a hurry?
Good-bye Carbs.
That's right, no bread, no pasta, no soda. He essentially wanted me to do a Keto thing for three weeks to let a decent amount melt away, and then with a week to go I can reintroduce them back so that it can come back and be in recovery before we do the surgery.
I'm not going to lie, this maybe hit me harder than the choices, and put all together, it's been overwhelming. I had been able to enjoy sodas again since the cold sensitivity left, and I've always been about those carbs. Generally, when someone goes on one of these plans they do it willingly, and plan on a date to start. I had to go into this without any planning, and immediately change my diet. Do you know exactly how many things have carbs and sugars in them? This hit me like a ton of bricks yesterday when I went to the store after doing laundry to try and find a quick snack and just...couldn't....find...anything. I've had to give up sugar in the sweet tea, and my meat and cheese consumption has really jumped up.
I mean, I had to watch Avengers:Endgame without any popcorn at all. Going to a movie and not eating popcorn is torture. Absolute torture. Luckily the movie kicked a ton of ass so it didn't matter, but we plan on seeing it again next weekend and I'll have to figure out what I can snack on.
The good news is that a date is set: May 21st. So, for two and a half more weeks I'll try to avoid all the grain and sugar carbs (fiber carbs are OK because of their function), and try to not get sick of meat and cheese. I'll also keep drinking the lemon-infused unsweet tea wishing that it had at least a little sugar in it, as well as avoid ice cream.
Also during that time I'll be making my decision and letting the docs know. I have until a couple of days before the surgery, but I don't want this to hang in the air. Anyone who has an opinion can, of course, share it with me. I think I know where I'm leaning but I want to let it marinate just a little before I lock it in.
In the meantime I'll do what I can to not let this all get to me. I honestly can say this is the most down I've felt because of the forced diet and weight of the decision. It's frustrating to get so close to the finish line and have a ton of stuff shoved on you. It sucks, as does having cancer in the first place. At least the end is near, whatever that end is.
Good luck my friend, difficult choices all around.
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