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The road to recovery lengthens considerably

The world weighs on my shoulders
But what am I to do?
You sometimes drive me crazy —
But I worry about you

I know it makes on difference
To what you’re going through
But I see the tip of the iceberg —
And I worry about you…


I never intend for this blog to be a chronicle of misery or complaints. I don't write these posts to solicit prayers or hugs or kind words or to make myself or Amanda look like heroes or martyrs. I just want to tell the truth and tell it well. It just so happens that this chapter of our lives is pretty craptacular, and I regret to report that it's about to get worse.

Yeah, I can't believe it either.

Mommy gets one of those snuggle moments that keeps her on the right side of sanity.

To recap the most recent hospital stay: my wife, Amanda, went into hospital about a month ago for a surgery to remove a big gob of ovarian cancer that was centered roughly where her uterus used to be. It had spread to invade her large intestine and vagina, and had strangled off a ureter, killing off a kidney.

The surgery went well in removing the cancer, but Dr. Sugimoto had to remove about a foot of bowel and splice the ends together near the sigmoid colon. But that splice broke in what's called an anastomotic leak, described as "the most significant complication after colorectal surgery and the major cause of postoperative mortality and morbidity." In a ten-out-of-ten painful experience, the sutured bowel broke, spilling feces into her abdominal cavity.

Emergency surgery forced them to open her all the way back up again, sternum to pubis. The doctors abandoned the ruptured spliced section and redirected the good portion out a new hole in her belly. That's a colostomy. The post-operative recovery was brutal, as feces continued to come out of the incision and drains, and she fought what appeared to be a significant infection.

The end of the bowel that was sticking out of the hole (the stoma) ended up dead and rotten. They trimmed it back at her bedside and hoped it would start 'producing' once it stopped 'bleeding and leaking pus.'

Well, she hasn't been producing for some time. In other words, no poop coming out of her new poop hole.

That, friends, was cause for serious concern.

(Here's the new stuff.)

A CT scan done yesterday revealed a blockage. Yeah, she's pretty backed up. The business end of the intestine has crawled back into her abdomen like the space slug that tried to eat the Millennium Falcon in The Empire Strikes Back, and it's shut itself off.

Just before the intestine slunk back into the stoma-hole.
Can't they just reach in, yank it out, pry it open and stitch it back to the hole? Apparently the surgical team went to med school and I didn't, so I'm going to say that they probably considered that, and it won't work.

The solution, if I can return to being grimly serious, is so rotten that I'm having a hard time not cursing up a storm.

Can't poop? Stop making poop or even pushing the existing poop until we can make the poop come out a new hole.
How do you stop making poop? Stop eating. Stop drinking. Even water.
Yes, we can open you all the way back up again and do yet another bowel surgery with probably yet another belly hole.

IN A FEW WEEKS.

Yeah, apparently post-surgical scar tissue is at its toughest, gnarliest, least-cooperative stage right about....now. Three weeks after surgery. After that, it starts to soften back up. Then, at about six weeks, they can get in and do more surgery without accidentally tearing your insides to shreds.

So, if I understand correctly, the proposed game plan is:
- TPN - total parenteral nutrition - food by IV direct to bloodstream - for the next three to five weeks. That's three to five weeks of no food, no juice, no water, period.
- Then, another surgery
- Then, another recovery including pain management and taking another crack at healing up that enormous abdominal wound

You probably read yesterday's post about how I'm fed up, Amanda's missing Gordon so badly she's nearly hysterical (please pardon the antiquated term), and the whole thing has us really wishing it were over.

Well, more than double that, because if there's an end to this, it just got a lot further away. You thought one week in hospital would put you out? You thought a month in hospital was enough to take you to the limit? How about maybe another two months in hospital, half of it with your only nutrition being pumped into an IV?!

As I said at the top, I'm not writing this to solicit sympathetic remarks, and you know why I'm mentioning that today? Because WHAT can anyone POSSIBLY say at this point? I'm out of things to say. I'm just flat-out WTF WTF WTF WTF WTF?

I'm torn between wanting to scream and curse and stomp and yell at a doctor or something .... and being smart enough to know that it wouldn't help one tiny bit. If she needs this to NOT DIE, then me getting mad about it isn't going to help. But I'm still mad! I'm mad in spite of my own understanding.

If you know me, you know my logical mind can usually fight my emotions and win. Handily. It's not even a fair fight most of the time. But they're really going it this time. It's a slobberknocker. I'm f'ing pissed, and without any real target other than the unfairness of it all. But "smart me" knows that fairness is an illusion anyway. None of this has been fair. But it's been UNfairness meted out in doses I could tolerate.

I know I'll tolerate this somehow. I always do. WE always do. Hell, do we have much choice?

I don't know if I've been fighting something over the past month or not. If so, it's been fighting to not have to call on others for much help. Others have been helping, and I'm grateful for it, but I try not to *ask* for much help. I may need to surrender, though. I may need to *ask* for something.

Amanda might need to surrender some, too, and I don't know what or how. It's not even for me to say. She's a stubborn broad, and that usually serves her well, but there might be some facade of composure she'll have to release in order to survive the coming famine.

Sometimes I think these posts out before I write them. Sometimes I just sit down and type and good stuff comes out. Most of this post has been me thinking out loud. If it's coming across a little scattered and uncertain, I assure you that it's because I am.

Being Gordon's primary caregiver right now, Amanda's loving partner, the central clearing house for information in the family, and manager of two radio stations, I've put myself in a position of needing to have my ish together. I am not in a spot where falling apart is really an option. But geez, you'd kind of understand if it happened, no?

Comments

  1. [If she needs this to NOT DIE, then me getting mad about it isn't going to help. But I'm still mad!]

    I totally understand this. Went through a similar feeling with hubby. Seriously could not find the grace I needed at that point - 6 months hospitalization, 2 surgeries, 2 years cancer treatments... wears you down no matter how strong you are, or how much you understand what's going on. That's because we're human Scott. We don't want people we love to deal with this, or be in pain, we don't want our kids to have to deal with it, WE don't want to deal with it. What you can't do is beat yourself up over feeling things. Feel them, scream, yell, cry... break a few dishes. If you try to not feel them, it's worse. Oh, I know - you wonder how it could possibly be worse, right? When Amanda is better ... you won't be. You go right on being human Scott. And we'll go right on praying and sending good thoughts your way. If I could bottle happiness I'd send you a case. But I can't. I also know words don't help much, but it might help you knowing that your reactions are pretty normal. And yes, I think anyone would understand if you "lost it" a little every now and then.

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  2. Scott, I have been following your posts about Amanda for about a year and a half. I haven't commented on your last few posts, but have been reading all of them. I know you don't want sympathy, but I am SO SORRY!!! It is UNREAL all that Amanda has gone through, and you as well, since anything she goes through, you do too. I am MAD for you, for Amanda.......hard to imagine how things always turn out badly for her. I wish that I could hug you both, I wish that I could offer support, but since we don't know each other and I live in the USA, there isn't anything I can do, but tell you how unfair this is and how sorry I am. As someone that has been treated for ovarian cancer (and uterine cancer as well as melanoma)I have shared Amanda's story. Prayers and thoughts your way. Heidi

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  4. So many people love you. Even those who don't know you. My heart breaks every time I learn of a set back for your family. I think about you and how you're trying to cope. I think about Gordon who probably doesn't fully understand but remains cheerful at times. Gordon must be a rock for Amanda to cling to, something to give you some hope in all this shit. I think about that with my own child. When you're staring at something bad you think of your kids and how this will affect them. It's good you are not ignoring your emotions. You're not selfish. You're just real.

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  5. I, too, have followed your story almost since the beginning when I participated in an auction that was raising money for your family. Even though you aren't looking for words of sympathy, I offer this anyway: I am so sorry for all you all are going through once again. I wish I could fix something for you. No one could possibly blame you for falling apart periodically. I'll say a prayer for your family when I think of you.

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