Stutter Steps
Just as a warning, this post isn't going to be all giggles and glitter.
Okay, maybe just for a second.
I'm failing at life.
That's what it feels like, all the time. I hurt where my kidney used to be, where the doc shoved his arm inside of me, and under my arm. I'm constantly exhausted, like to the point where just standing up and walking across a room can feel like an act of iron will. I make grunts and noises all the time of which I am most often unaware until it's pointed out.
I'm getting farther and farther behind in every aspect of my existence that matters to me. I feel like I'm not just swimming through molasses, but drowning in it.
I mean, fast-forward ten years, and if I'm still alive, this will all be funny, I'm sure. Well, some of it, at least.
Did I tell you about the musical my wife and I went to see? The one about a 14 year old girl who loses a parent to unspecified stage 4 cancer and how her other parent has to forge ahead, dealing with a grieving and surly teenage daughter without a partner.
Why yes, I have stage 4 cancer. Why yes, I have a surly 14 year old daughter. Why yes, my wife's biggest fear is that I will die and leave her alone with said surly daughter. Why no, none of my friends, colleagues or students thought to warn me about the show.
I mean, sure, I should've checked to see what it was about. And under normal circumstances, we would've seen the whole setup outside the theatre where audience members could write a message to people in their lives who have or had cancer on a cardboard cutout of a bird.
But we were running late, and there was a mixup with the dates for our tickets, so... we just bustled ourselves into the auditorium and proceeded to get pummeled for the next two hours.
Even in the moment, we could see the humor in it. Give me a hot minute, and the story'll be hilarious, I'm sure.
I feel a bit like this right now.
I was supposed to go back in for my first chemotherapy treatment with the new regimen this last Wednesday. That didn't happen. There were some good and compelling reasons for that, which I'll give in a minute. That didn't keep it from being a disappointment. If you had told me a year ago that I would be upset about having to delay poison being injected into my heart, I would've mocked you. And yet, that's exactly how it felt. I was angry. Sad. Like somehow I had failed.
I want this to be over, and we're not anywhere close.
That's probably not completely true, but that is definitely how I was feeling yesterday.
Now, for the reasons why. First, we need to get another PET CT. It's been two months since I've had any treatments, and we need to make sure we know what the baseline size of my tumors are. If we go in without that information, we could look at the next scan and think that no progress had been made at all, even though it might have been reduced by half from where the tumors are right now.
I'm not sure that sentence made any sense.
That was one of the reasons. The other was that my diagnosis was still bugging my oncologist. We had the first biopsy results that said Hodgkins, then one that was weird--maybe t-cell, then they said it was Hodgkins or maybe not...? There was enough back and forth that it was making him nervous. So, he send the samples off to Massachusetts General and hadn't gotten word back yet when I went in to see him yesterday morning.
He got word back later that night. Their conclusion? Non-Hodgkins b-cell lymphoma, unclassified or unspecified or un-something. My understanding is that it just means it's not one of those freaky weird ones you can get with non-Hodgkins b-cell.
Well, that's just great.
So, was it non-Hodgkins all along? My oncologist thinks so, considering the statistical improbability of me having three different primary cancers all at once. The narcissist in me wants to believe the three cancers thing, because it just reinforces the whole "I am special" narrative. So I'm going with the first one.
The treatment for Hodgkins and non-Hodgkins lymphomas do tend to overlap a bit, so that could explain why most of the masses responded so well at first. It would also explain why part of them didn't.
But once again, no one knows for sure. Maybe the stuff that responded actually was Hodgkins, and the stuff that didn't is some alien virus that looks a little bit like Hodgkins, a little bit like t-cell, a little bit like b-cell. Right now, that seems just about as plausible to me.
It's enough to make me want to shove frankincense up my butt*.
Over the following few days, I started to feel something creep back in that I haven't felt in a while.
Rage.
I'm not sure with whom, exactly, I am enraged. My oncologist? Maybe, but I've liked him up to this point and I can't really fault anything he's done. I mean, as soon as things started getting weird, he kept looking for second and third and fourth opinions. He wasn't willing to just blithely wade in with what he thought.
My pathologist? Which one? I mean, I've apparently had more than a couple, and I haven't met any of them or even know their names. That's maybe a richer rage target, but still feels off. It's just people staring at a computer screen, trying to figure out what that slide image is supposed to mean. This is biology, folks. One of the reasons I hated it so much in high school was because it was so much messier than physics.
Myself? That's another rich vein to mine but so problematic in the long run. Do I think my thoughts, actions, habits might play some part in me having two cancers? Sure. Do I blame anyone for getting it? Hell to the no. And blaming myself is a really quick way toward fatal isolation. I know what that path looks like from a lot of sad experience.
Fine, then whose fault is this? At whom do I get to point the finger? Where can I vent all of this white-hot lava inside of me?
In order: no one, no one and probably only at inanimate objects. Non flammable ones.
There doesn't seem to be a good outlet for my rage right now, so it's turning inward. I can feel it curdling up in my body, causing my tiredness and aches and pains to intensify, leading me once more toward deadly isolation.
What am I supposed to do? All I want is to take drugs strong enough to knock me out for a couple of days. But then at some point, I'd have to wake up, and things would be worse.
I think this is a place where a higher power can be a help. I also have experiential evidence that focusing on others when I'm in a dark place can be really healing. What are my reasons for not doing it? I'm exhausted and I hurt all the time. Okay. Will that change if I keep doing what I've been doing? Clearly not.
So maybe it's time for some radical alterations to my daily routine. Even as I type this, I shudder. I DON'T WANT TO. I want to just be filled with righteous rage against someone I can make my nemesis. That seems way easier.
Don't get me wrong. Rage has its place. It was rage that got me to start waking up again in the midst of my treatments. I've just had some surgeries and strange occurrences that have taken off that path again.
I can do kind things for others. Or at least I can try. And that seems better than sitting back and watching the world burn.
*This was NOT an invitation to my friends selling DoTerra or Young Family Living essential oils to accost me with your wares. I like the smell of peppermint and grapefruit. I do no, however, stick them (or anything that smells like them) up my bottom. Much love!
-----------------------------
Up next--I go through some of the freakiest home remedies to which I've been exposed. I'm looking at YOU, frankincense.
Next post.
Okay, maybe just for a second.
 |
| Seriously. That's all you get. No more. |
I'm failing at life.
That's what it feels like, all the time. I hurt where my kidney used to be, where the doc shoved his arm inside of me, and under my arm. I'm constantly exhausted, like to the point where just standing up and walking across a room can feel like an act of iron will. I make grunts and noises all the time of which I am most often unaware until it's pointed out.
I'm getting farther and farther behind in every aspect of my existence that matters to me. I feel like I'm not just swimming through molasses, but drowning in it.
 |
| Yep. Something like that. |
Did I tell you about the musical my wife and I went to see? The one about a 14 year old girl who loses a parent to unspecified stage 4 cancer and how her other parent has to forge ahead, dealing with a grieving and surly teenage daughter without a partner.
 |
| That's the one. |
Why yes, I have stage 4 cancer. Why yes, I have a surly 14 year old daughter. Why yes, my wife's biggest fear is that I will die and leave her alone with said surly daughter. Why no, none of my friends, colleagues or students thought to warn me about the show.
I mean, sure, I should've checked to see what it was about. And under normal circumstances, we would've seen the whole setup outside the theatre where audience members could write a message to people in their lives who have or had cancer on a cardboard cutout of a bird.
But we were running late, and there was a mixup with the dates for our tickets, so... we just bustled ourselves into the auditorium and proceeded to get pummeled for the next two hours.
Even in the moment, we could see the humor in it. Give me a hot minute, and the story'll be hilarious, I'm sure.
I feel a bit like this right now.
 |
| Fair? No. Accurate? Yes. |
I was supposed to go back in for my first chemotherapy treatment with the new regimen this last Wednesday. That didn't happen. There were some good and compelling reasons for that, which I'll give in a minute. That didn't keep it from being a disappointment. If you had told me a year ago that I would be upset about having to delay poison being injected into my heart, I would've mocked you. And yet, that's exactly how it felt. I was angry. Sad. Like somehow I had failed.
I want this to be over, and we're not anywhere close.
That's probably not completely true, but that is definitely how I was feeling yesterday.
Now, for the reasons why. First, we need to get another PET CT. It's been two months since I've had any treatments, and we need to make sure we know what the baseline size of my tumors are. If we go in without that information, we could look at the next scan and think that no progress had been made at all, even though it might have been reduced by half from where the tumors are right now.
I'm not sure that sentence made any sense.
That was one of the reasons. The other was that my diagnosis was still bugging my oncologist. We had the first biopsy results that said Hodgkins, then one that was weird--maybe t-cell, then they said it was Hodgkins or maybe not...? There was enough back and forth that it was making him nervous. So, he send the samples off to Massachusetts General and hadn't gotten word back yet when I went in to see him yesterday morning.
He got word back later that night. Their conclusion? Non-Hodgkins b-cell lymphoma, unclassified or unspecified or un-something. My understanding is that it just means it's not one of those freaky weird ones you can get with non-Hodgkins b-cell.
Well, that's just great.
So, was it non-Hodgkins all along? My oncologist thinks so, considering the statistical improbability of me having three different primary cancers all at once. The narcissist in me wants to believe the three cancers thing, because it just reinforces the whole "I am special" narrative. So I'm going with the first one.
The treatment for Hodgkins and non-Hodgkins lymphomas do tend to overlap a bit, so that could explain why most of the masses responded so well at first. It would also explain why part of them didn't.
But once again, no one knows for sure. Maybe the stuff that responded actually was Hodgkins, and the stuff that didn't is some alien virus that looks a little bit like Hodgkins, a little bit like t-cell, a little bit like b-cell. Right now, that seems just about as plausible to me.
 |
| Okay, so he doesn't look all that trustworthy. But I've never even seen my pathologist. |
It's enough to make me want to shove frankincense up my butt*.
Over the following few days, I started to feel something creep back in that I haven't felt in a while.
Rage.
I'm not sure with whom, exactly, I am enraged. My oncologist? Maybe, but I've liked him up to this point and I can't really fault anything he's done. I mean, as soon as things started getting weird, he kept looking for second and third and fourth opinions. He wasn't willing to just blithely wade in with what he thought.
My pathologist? Which one? I mean, I've apparently had more than a couple, and I haven't met any of them or even know their names. That's maybe a richer rage target, but still feels off. It's just people staring at a computer screen, trying to figure out what that slide image is supposed to mean. This is biology, folks. One of the reasons I hated it so much in high school was because it was so much messier than physics.
Myself? That's another rich vein to mine but so problematic in the long run. Do I think my thoughts, actions, habits might play some part in me having two cancers? Sure. Do I blame anyone for getting it? Hell to the no. And blaming myself is a really quick way toward fatal isolation. I know what that path looks like from a lot of sad experience.
Fine, then whose fault is this? At whom do I get to point the finger? Where can I vent all of this white-hot lava inside of me?
In order: no one, no one and probably only at inanimate objects. Non flammable ones.
 |
| No! Not Pooh! Also, this might be from a religious ceremony, and I intend no disrespect. |
There doesn't seem to be a good outlet for my rage right now, so it's turning inward. I can feel it curdling up in my body, causing my tiredness and aches and pains to intensify, leading me once more toward deadly isolation.
What am I supposed to do? All I want is to take drugs strong enough to knock me out for a couple of days. But then at some point, I'd have to wake up, and things would be worse.
I think this is a place where a higher power can be a help. I also have experiential evidence that focusing on others when I'm in a dark place can be really healing. What are my reasons for not doing it? I'm exhausted and I hurt all the time. Okay. Will that change if I keep doing what I've been doing? Clearly not.
So maybe it's time for some radical alterations to my daily routine. Even as I type this, I shudder. I DON'T WANT TO. I want to just be filled with righteous rage against someone I can make my nemesis. That seems way easier.
Don't get me wrong. Rage has its place. It was rage that got me to start waking up again in the midst of my treatments. I've just had some surgeries and strange occurrences that have taken off that path again.
I can do kind things for others. Or at least I can try. And that seems better than sitting back and watching the world burn.
 |
| Although I will admit it's a little tempting. |
*This was NOT an invitation to my friends selling DoTerra or Young Family Living essential oils to accost me with your wares. I like the smell of peppermint and grapefruit. I do no, however, stick them (or anything that smells like them) up my bottom. Much love!
-----------------------------
Up next--I go through some of the freakiest home remedies to which I've been exposed. I'm looking at YOU, frankincense.
Next post.
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