- We went to Mayos last week and made it back safely.
- They placed two Seton drains.
- Proctectomy has been scheduled for November 8th, with tests and consultations on the 6th and 7th.
Now, then, what the hell does that mean?
For the first part, that's the easy one. It was good to spend some time with my brother and my father. We had a fun trip to the Mall of America and sushi for supper that night. Mike actually lost his glasses on the first loop of the SpongeBob rollercoaster, which meant for the rest of the ride I was laughing and shouting "did that just happen?" Once the coaster stopped, we told Dad what happened, resulting in a deadpan "you're kidding." However, when we stood up, his glasses were wedged between the seat in front of us and the car itself. The situation, then, immediately switched from incredulous frustration to incredulous relief, which also made it hilarious. We got Caribou Coffee a few times, read to each other, and had some good catch-up time.
In the appointments themselves, we got exactly what we asked for--we got options. It happens that our best option is surgery. Turns out that the fistulas bursting open was a little more dangerous than I had realized, which led to our decision to put in the Seton drains, mostly as a stop-gap.
Anyone asking what a Seton drain is? This was a new one on me, too. The only ones I've run into that have known what it is are somewhere in the medical field, even in making an appointment at my doctor's office the front desk staff had to ask what it was and they deal with a lot of my kind of ridiculous regularly. So here's the explanation: right now, these fistulas that I have created their own path from the rectum to exit out somewhere else, eventually to open air to drain...stuff out. A Seton drain threads a suture/string/something through the passageway until it loops back out, at which point that the ends are tied together. Now recall that both of these "starter holes" are in the rectum. It's kind of like a weird piercing that I poop right next to.
It is just as annoying as it sounds, maybe more so. I need to keep it as clean as possible, and it is suggested that I take a bath pretty much every time I have a BM (bowel movement), and I don't exactly carry a tub around with me or have access to one at work. Now let's add a bit more to that: part of the drain, that loop of suture string, is literally flaying open my skin. With the way things are going, I think it is wholly possible that this loop could eventually work its way out. Yes, I have talked to a couple of parties about this, and have been told to keep it as clean as I could, let them know if it "gets worse." See, I had thought that flaying open was pretty bad, but at least it's been documented in three different places now.
That brings me now to the third point, the surgery itself. If nothing else, I will not have to deal with these drains any longer once I have had that surgery. Also, we knew this surgery was inevitable and now we no longer have to worry on when it's going to interrupt our lives because we've chosen to do it on our terms rather than when my body forces us to. My doctors were emphatic that whenever I couldn't stand the symptoms anymore was when we could pull the trigger--I have hit my limit.
Sometimes, that is it. I feel confident that we are making the right decision. I cannot dwell on the what-ifs because they exist in another reality that I will never know. This is the decision I am making, so whether it was the right one at the right time, we are doing the best we can with what we know now. I have done everything I can to avoid this for as long as possible. It's time to let it go. There is time to get to work preparing all that I can in the meanwhile, lining up help and logistics. There is peace in this decision. There is calm.
And then in other moments, my tears choke out the wordless wail into a silent contortion of features. There is too much emotion to process in a moment. I can't even figure out how to let it out, it feels so impossible. There is a roar in my ears and tightness in my forehead. I forget how to breathe. I am robbed of words, voice. And for a short time, I am lost.
When I can swallow again, the feeling recedes to a weight behind nose, at the top of my throat. Crying doesn't always seem to make it feel any smaller, but some days it does. I can summon it in an instant if I wanted to, but I am not constantly overwhelmed by it--only sometimes. I've learned to let that grief wave roll through me, to bodysurf rather than fight the current.
I'm spending pockets of time in both, oscillating to helpful coping techniques and spending time in the trauma vortex in turn, titrating the emotions. There's a lot to work through, yet, and about 84 days, as of writing this, to hopefully make a dent--that's a lot and little time all at once. And I have no illusions that this will be the only blog about this before or afterwards. This is a continuous cycle of reacceptance, in that I accept that I have this disease but must constantly reaccept what accommodations I need to make.
But in the meanwhile, I just found out there's such a thing called "Baby Animals in the Wild" is on Netflix.
In the appointments themselves, we got exactly what we asked for--we got options. It happens that our best option is surgery. Turns out that the fistulas bursting open was a little more dangerous than I had realized, which led to our decision to put in the Seton drains, mostly as a stop-gap.
Anyone asking what a Seton drain is? This was a new one on me, too. The only ones I've run into that have known what it is are somewhere in the medical field, even in making an appointment at my doctor's office the front desk staff had to ask what it was and they deal with a lot of my kind of ridiculous regularly. So here's the explanation: right now, these fistulas that I have created their own path from the rectum to exit out somewhere else, eventually to open air to drain...stuff out. A Seton drain threads a suture/string/something through the passageway until it loops back out, at which point that the ends are tied together. Now recall that both of these "starter holes" are in the rectum. It's kind of like a weird piercing that I poop right next to.
It is just as annoying as it sounds, maybe more so. I need to keep it as clean as possible, and it is suggested that I take a bath pretty much every time I have a BM (bowel movement), and I don't exactly carry a tub around with me or have access to one at work. Now let's add a bit more to that: part of the drain, that loop of suture string, is literally flaying open my skin. With the way things are going, I think it is wholly possible that this loop could eventually work its way out. Yes, I have talked to a couple of parties about this, and have been told to keep it as clean as I could, let them know if it "gets worse." See, I had thought that flaying open was pretty bad, but at least it's been documented in three different places now.
That brings me now to the third point, the surgery itself. If nothing else, I will not have to deal with these drains any longer once I have had that surgery. Also, we knew this surgery was inevitable and now we no longer have to worry on when it's going to interrupt our lives because we've chosen to do it on our terms rather than when my body forces us to. My doctors were emphatic that whenever I couldn't stand the symptoms anymore was when we could pull the trigger--I have hit my limit.
Sometimes, that is it. I feel confident that we are making the right decision. I cannot dwell on the what-ifs because they exist in another reality that I will never know. This is the decision I am making, so whether it was the right one at the right time, we are doing the best we can with what we know now. I have done everything I can to avoid this for as long as possible. It's time to let it go. There is time to get to work preparing all that I can in the meanwhile, lining up help and logistics. There is peace in this decision. There is calm.
And then in other moments, my tears choke out the wordless wail into a silent contortion of features. There is too much emotion to process in a moment. I can't even figure out how to let it out, it feels so impossible. There is a roar in my ears and tightness in my forehead. I forget how to breathe. I am robbed of words, voice. And for a short time, I am lost.
When I can swallow again, the feeling recedes to a weight behind nose, at the top of my throat. Crying doesn't always seem to make it feel any smaller, but some days it does. I can summon it in an instant if I wanted to, but I am not constantly overwhelmed by it--only sometimes. I've learned to let that grief wave roll through me, to bodysurf rather than fight the current.
I'm spending pockets of time in both, oscillating to helpful coping techniques and spending time in the trauma vortex in turn, titrating the emotions. There's a lot to work through, yet, and about 84 days, as of writing this, to hopefully make a dent--that's a lot and little time all at once. And I have no illusions that this will be the only blog about this before or afterwards. This is a continuous cycle of reacceptance, in that I accept that I have this disease but must constantly reaccept what accommodations I need to make.
But in the meanwhile, I just found out there's such a thing called "Baby Animals in the Wild" is on Netflix.
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