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The one-year anniversary of my total glossectomy

jakeseliger.com

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Re: The one-year anniversary of my total glossectomy

#21

Post by DougN7 »

jseliger wrote: post #11
uxcolumbo wrote: post #5

I don’t really know what to say, it’s hard for me to fathom what you had to go through. The bit you wrote about having to spit in a cup for the rest of your life, really brought it close to me how much we take for granted. I admire your strength. I wish the best for you and your wife.

Thank you! I wish I felt strong; I had a friend from high school visiting this weekend, and he said that my strength is inspirational. I looked around wondering if he was talking to someone else, but in fact I was the only person in the room.

Sometimes it seems like there is no choice but to be strong. But in reality someone could choose to give up and give in and quit. Not making that choice is what we admire in people, and you in particular.

Re: The one-year anniversary of my total glossectomy

#22

Post by BurningFrog »

jseliger wrote: post #10
voisin wrote: post #3

@jseliger, I’ve been following your journey via your comments here on HN and the occasional post. I am glad you are posting and I think for those of us who haven’t been close to someone with a serious diagnosis and treatment like yours, it has humanized Cancer in a really helpful way. Thank you for posting and giving this insight and wishing you all the best as you continue along this path.

You're welcome! I've been "reading the Internet" since the late '90s with sites like /., and, when I got diagnosed with the death sentence sentence—recurrent and metastatic head and neck cancer—I began looking into clinical trials, and I realized that I'd never read any good descriptions of what clinical trials are like from the patient's perspective. So my wife and I decided that the thing that we needed to exist in…

> I don't understand why the FDA hasn't approved Moderna's mRNA-4157 yet, apart from bureaucratic inertia and indifference to human suffering.

Both very in character for what FDA does.

Re: The one-year anniversary of my total glossectomy

#23

Post by baggy_trough »

BurningFrog wrote: post #22
jseliger wrote: post #10

Earlier quoted context omitted.

You're welcome! I've been "reading the Internet" since the late '90s with sites like /., and, when I got diagnosed with the death sentence sentence—recurrent and metastatic head and neck cancer—I began looking into clinical trials, and I realized that I'd never read any good descriptions of what clinical trials are like from the patient's perspective. So my wife and I decided that the thing that we needed to exist in…

> I don't understand why the FDA hasn't approved Moderna's mRNA-4157 yet, apart from bureaucratic inertia and indifference to human suffering. Both very in character for what FDA does.

[flagged]

Re: The one-year anniversary of my total glossectomy

#24

Post by baggy_trough »

delichon wrote: post #15
jseliger wrote: post #10

Earlier quoted context omitted.

You're welcome! I've been "reading the Internet" since the late '90s with sites like /., and, when I got diagnosed with the death sentence sentence—recurrent and metastatic head and neck cancer—I began looking into clinical trials, and I realized that I'd never read any good descriptions of what clinical trials are like from the patient's perspective. So my wife and I decided that the thing that we needed to exist in…

I went through terminal cancer with both parents. It's infuriating that with that diagnosis the medical cabinet is open with respect to palliative care, in quantities that make an exit simple. But at the same time they feel the need to protect you from possible treatments. Potential accelerated death? Approved. Potential prolonged life? We'll need more evidence.

It's especially infuriating that federal restrictions on medical treatment are unlawful to start with (there's no constitutional basis for them).

Re: The one-year anniversary of my total glossectomy

#25

Post by osmano807 »

Thanks for your experience, that's important to remind us (me) of the other side.

Sometimes I feel really sad that the bus factor of some treatment is 1, and double sad when that one is me. No one should have delayed care just because I need my vacation, or my day off.

Kudos to the surgeon who trusted his instincts and suggested a surgical biopsy, sometimes patients get so happy with dubious results that we feel like we're removing their happiness, or that we're secretly hoping for the worst.

I hope that you're going through this with peace of mind.

Re: The one-year anniversary of my total glossectomy

#26

Post by epmatsw »

polishdude20 wrote: post #14
lr4444lr wrote: post #8

That's it, I'm going talk to my doctor about getting the Galleri test. I was already on the fence, but this is the straw that breaks the camel's back for me. (It isn't advertised as targeting his specific cancer, but goddamnit, I need some peace of mind.)

Is it available?

It is! I got one for $750-ish about a month ago.

Re: The one-year anniversary of my total glossectomy

#27

Post by deprecative »

baggy_trough wrote: post #23
BurningFrog wrote: post #22

Earlier quoted context omitted.

> I don't understand why the FDA hasn't approved Moderna's mRNA-4157 yet, apart from bureaucratic inertia and indifference to human suffering. Both very in character for what FDA does.

[flagged]

I'd argue the DoT comes surprisingly close to the FDA. And let's not get started on how backwards the FDA and USDA are with their almost competing near miss regulatory areas.

Re: The one-year anniversary of my total glossectomy

#28

Post by kelnos »

jseliger wrote: post #11
uxcolumbo wrote: post #5

I don’t really know what to say, it’s hard for me to fathom what you had to go through. The bit you wrote about having to spit in a cup for the rest of your life, really brought it close to me how much we take for granted. I admire your strength. I wish the best for you and your wife.

Thank you! I wish I felt strong; I had a friend from high school visiting this weekend, and he said that my strength is inspirational. I looked around wondering if he was talking to someone else, but in fact I was the only person in the room.

This makes me think about the saying about how being brave doesn't mean not being scared, it means pushing through the fear and doing what has to be done anyway.

I feel like it's similar to your strength. From your writing I gather you've had more than your share of bad days, emotionally, during this ordeal. But you're still here, still writing, still posting here, talking to random strangers on the internet. And you and your wife's drive to document all this so others can better navigate the clinical trial process in the future... yeah, absolutely, this is strength, and a lot of it, even if you don't feel strong.

Anyhow, for what it's worth, know that there are random people on the internet who follow your story from afar, and that we're rooting for you.

Re: The one-year anniversary of my total glossectomy

#29

Post by ChemoCoward »

nyokodo wrote: post #17
Dylan16807 wrote: post #13

Earlier quoted context omitted.

What does it look like for someone to confront a situation like this without courage? To be clear, I'm not really talking about this story in particular, but the way people discuss other people in really bad situations. It seems like almost any reaction that isn't "lie there motionless" gets called "courageous". I guess it feels more like a pep talk than an evaluation.

> What does it look like for someone to confront a situation like this without courage? There’s a lot of dark places people can go and choose to stay when they experience tragedy. Drugs, alcohol abuse, suicide, wallowing in misery etc. Perhaps you’ve never experienced tragedy, or been tempted by these dark reactions but for many they are all too familiar and it takes enormous courage to combat them. Seeing examples o…

I was diagnosed with cancer in 2013. I had many surgeries, lots of radiation therapy, and like the woman in "Brazil", my complications developed complications. I feel I received excellent care, and I have had no tumors spotted in 8-ish years. But I've been in pain every waking hour of every day since May 16th 2013. Sometimes the pain isn't too bad, sometimes I lie in bed, legs rigid with pain, and scream. If I get a serious recurrence of my cancer, or a new cancer, I'm going to blow my brains out. I can't conceive of anything occurring in my future that would make it worth going through a multi-year episode of surgeries and other aggressive cancer treatments again.

Re: The one-year anniversary of my total glossectomy

#30

Post by majormajor »

jseliger wrote: post #11
uxcolumbo wrote: post #5

I don’t really know what to say, it’s hard for me to fathom what you had to go through. The bit you wrote about having to spit in a cup for the rest of your life, really brought it close to me how much we take for granted. I admire your strength. I wish the best for you and your wife.

Thank you! I wish I felt strong; I had a friend from high school visiting this weekend, and he said that my strength is inspirational. I looked around wondering if he was talking to someone else, but in fact I was the only person in the room.

In my experience people confuse "what the fuck else am I supposed to do?" with "strength" a lot in ways that are ... not as helpful as they think they are.

See also, in the not-so-helpful department: "you're so lucky [to not be dead yet]" when luck would've not been being so close to death in the first place.

I also don't really understand how it's supposed to be inspirational but I wish you the best and hope you make it through to the other side to the full recovery phase.

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