Yeah, so, the blog? It's supposed to be a way to update you all on how things are going with us all. But what do I write about when nothing has really changed?
Pain? Still there. Mucous? Still there. Taste? Still not there. Feeding tube? Yeah. Totally still there.
Oh, and that corner from Monday? Still a long way away.
And yet, we're doing fine. We have our families. We have our friends. We have Wags. But most of all, we have each other.
If we are strong, it's because we have each other. If we are facing this with humor, grace, optimism, it's because we have each other. When I am down, he picks me up. When he is down, I hammer him about how he needs to feed and hydrate more. OK, maybe sometimes I pick him up too. I may not always know how he feels—those of you who know him know he's the strong, silent type—but I always know that holding his hand or rubbing his back or giving him my lap to lay his head in will make him feel better. And he knows that just putting his arms around me will make me feel better.
So yeah, we're doing fine. Better than fine, actually. We have each other.
Sunday, September 25, 2011
Monday, September 19, 2011
Recovery Week 3: "I can see it from here"
This just in:
"I haven't quite turned the corner yet, but I think I can see it from here."
—Victor Love via Facebook
"I haven't quite turned the corner yet, but I think I can see it from here."
—Victor Love via Facebook
Sunday, September 18, 2011
Recovery Week 2: SSDD
Let's put the good news up front this week. The NotChemo oncologist agreed with the radiation oncologist: He expects this treatment to do the trick and that the PET scan will show up clean.
Can I get a WOO and a HOO?!?!?!
And right now, the promise of a clean PET scan is going to have to do, because everything else is the same. And it's going to be the same for a little while longer because even though he's no longer in treatment, damage is still being done. As the radiation oncologist said, the reason you can't get a PET scan for a few months is that the radiation is still working on the cancer. Well, what occurred to us this week was that if the radiation is still working on the cancer, it's still working on the healthy tissue as well. Once the radiation has done its job, the cancer will die, and the healthy cells will start to regenerate. And that's when I expect a resurgence from my sweet baboo.
So that's what I'm clinging to. Last week, you may recall, my blog post was a little bit of a downer. But since then, I've been reminded by my friends and family—that's you guys—that I am strong. I am optimistic. I am resilient. It started with a poem sent to me by my a friend whose husband went through a very similar cancer scenario last year (and just had a totally clean PET!). It continued when a friend of mine with breast cancer went through her surgery successfully—and maintained her sense of humor throughout the ordeal. It was prolonged by your daily Facebook messages and blog comments. It spiked up when I found out I was going to be a grandma—again—and that my niece joined my nephew in getting engaged. And then it was cemented by a timely card from a dear friend saying that she believed in me.
So for anyone who is struggling this week with your own challenges—and I imagine that's most of you in one way or another—let me start your week with the poem from my friend Liz. I wish you hope, strength, encouragement and sunlight.
The Word
By Tony Hoagland
Down near the bottom
of the crossed-out list
of things you have to do today,
between “green thread”
and “broccoli” you find
that you have penciled “sunlight.”
Resting on the page, the word
is as beautiful, it touches you
as if you had a friend
and sunlight were a present
he had sent you from some place distant
as this morning—to cheer you up,
and to remind you that,
among your duties, pleasure
is a thing,
that also needs accomplishing
Do you remember?
that time and light are kinds
of love, and love
is no less practical
than a coffee grinder
or a safe spare tire?
Tomorrow you may be utterly
without a clue
but today you get a telegram,
from the heart in exile
proclaiming that the kingdom
still exists,
the king and queen alive,
still speaking to their children,
—to any one among them
who can find the time,
to sit out in the sun and listen.
Can I get a WOO and a HOO?!?!?!
And right now, the promise of a clean PET scan is going to have to do, because everything else is the same. And it's going to be the same for a little while longer because even though he's no longer in treatment, damage is still being done. As the radiation oncologist said, the reason you can't get a PET scan for a few months is that the radiation is still working on the cancer. Well, what occurred to us this week was that if the radiation is still working on the cancer, it's still working on the healthy tissue as well. Once the radiation has done its job, the cancer will die, and the healthy cells will start to regenerate. And that's when I expect a resurgence from my sweet baboo.
So that's what I'm clinging to. Last week, you may recall, my blog post was a little bit of a downer. But since then, I've been reminded by my friends and family—that's you guys—that I am strong. I am optimistic. I am resilient. It started with a poem sent to me by my a friend whose husband went through a very similar cancer scenario last year (and just had a totally clean PET!). It continued when a friend of mine with breast cancer went through her surgery successfully—and maintained her sense of humor throughout the ordeal. It was prolonged by your daily Facebook messages and blog comments. It spiked up when I found out I was going to be a grandma—again—and that my niece joined my nephew in getting engaged. And then it was cemented by a timely card from a dear friend saying that she believed in me.
So for anyone who is struggling this week with your own challenges—and I imagine that's most of you in one way or another—let me start your week with the poem from my friend Liz. I wish you hope, strength, encouragement and sunlight.
The Word
By Tony Hoagland
Down near the bottom
of the crossed-out list
of things you have to do today,
between “green thread”
and “broccoli” you find
that you have penciled “sunlight.”
Resting on the page, the word
is as beautiful, it touches you
as if you had a friend
and sunlight were a present
he had sent you from some place distant
as this morning—to cheer you up,
and to remind you that,
among your duties, pleasure
is a thing,
that also needs accomplishing
Do you remember?
that time and light are kinds
of love, and love
is no less practical
than a coffee grinder
or a safe spare tire?
Tomorrow you may be utterly
without a clue
but today you get a telegram,
from the heart in exile
proclaiming that the kingdom
still exists,
the king and queen alive,
still speaking to their children,
—to any one among them
who can find the time,
to sit out in the sun and listen.
Saturday, September 10, 2011
Recovery Week 1: What Recovery?
Much like the economy, experts say we are in recovery. But also like the economy, it doesn't feel like we're in a recovery. It seems to me that a recovery would bring reduced pain. Diminished mucous. Improved taste. Less fatigue. But none of these are in evidence.
A typical day goes like this:
But now the blog is starting to sound like The Scallion, so let's get on with the update.
This week he had a one-week posttreatment appointment with the radiation oncologist. She said she was surprised (but pleased) that he hadn't lost any weight over the previous week. Most people do, without the radiation staff harping on it all the time. I said, "Most people don't live with Atilla the Hun." We smiled at each other, and she laughed. She said he looked great and that he really came through the treatment like a trouper and that he should just keep doing what he's been doing.
He mentioned how disappointed he was that he wasn't feeling even one iota better, and she just gave him that "I just cured you of cancer, you ungrateful pig" look and said, "Yeah."
The one thing she said that was super encouraging was that she believes this treatment did the trick. That when he goes in for his PET scan in two months and three weeks, she expects it to be clear. No cancer. No surgery indicated. No additional treatments. That was fantastic news.
So this week, he sees the NotChemo oncologist for a "routine" follow-up, and then I think the next thing will be the PET scan. Oh, I know what you're thinking. "Won't the next thing be getting his feeding tube out?" Oh, no, my dear readers. The radiation oncologist said she thought it would be four to six months yet that he'd be on the tube. Eventually his taste will return, yes, and he'll start eating again. But he will need to be off the tube 100 percent (that is, getting no sustenance through the tube at all) for two weeks—with no weight loss. When that happens, he will be able to get the tube out. That was not fantastic news.
The cancer giveth, and the cancer taketh away.
A typical day goes like this:
- Get up, take the dog for a walk, feed, nap for an hour or two.
- Get up, take some medication, cough up a lung.
- Feed, nap for an hour or two.
- Get up, play a game on the iPad or watch some TV.
- Feed, nap for an hour or two.
- Wait for me to come home or finish work.
- Feed, take the dog for a walk, whisper out a conversation.
- Prepare for bed: Take some medication, cough up the other lung, string out the oxygen, put on the bite guard.
- Sleep.
But now the blog is starting to sound like The Scallion, so let's get on with the update.
This week he had a one-week posttreatment appointment with the radiation oncologist. She said she was surprised (but pleased) that he hadn't lost any weight over the previous week. Most people do, without the radiation staff harping on it all the time. I said, "Most people don't live with Atilla the Hun." We smiled at each other, and she laughed. She said he looked great and that he really came through the treatment like a trouper and that he should just keep doing what he's been doing.
He mentioned how disappointed he was that he wasn't feeling even one iota better, and she just gave him that "I just cured you of cancer, you ungrateful pig" look and said, "Yeah."
The one thing she said that was super encouraging was that she believes this treatment did the trick. That when he goes in for his PET scan in two months and three weeks, she expects it to be clear. No cancer. No surgery indicated. No additional treatments. That was fantastic news.
So this week, he sees the NotChemo oncologist for a "routine" follow-up, and then I think the next thing will be the PET scan. Oh, I know what you're thinking. "Won't the next thing be getting his feeding tube out?" Oh, no, my dear readers. The radiation oncologist said she thought it would be four to six months yet that he'd be on the tube. Eventually his taste will return, yes, and he'll start eating again. But he will need to be off the tube 100 percent (that is, getting no sustenance through the tube at all) for two weeks—with no weight loss. When that happens, he will be able to get the tube out. That was not fantastic news.
The cancer giveth, and the cancer taketh away.
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