F*^$ Cancer

[spleen1015]

Best of luck to you guys, Jon.

[Kodos]

Hoping for good news. Sending healing thoughts her way.

[Qwikshot]

Originally Posted by path12

Figured I'd update. Had the surgery and turns out I'm terminal, 5-12 months. Going through chemo/radiation in hopes of getting some more quality time out of it but so far it's not really taking.

Anyway, I always thought I'd be super scared but I'm not. Sad to leave of course, but overall fairly zen. I'm not one to ask why me.

I can't express in words how fearless you sound in your words. I hope that mindset you have carries you into your journey.

[MacroGuru]

Originally Posted by path12

Figured I'd update. Had the surgery and turns out I'm terminal, 5-12 months. Going through chemo/radiation in hopes of getting some more quality time out of it but so far it's not really taking.

Anyway, I always thought I'd be super scared but I'm not. Sad to leave of course, but overall fairly zen. I'm not one to ask why me.

Fuck man, I avoid this thread sometimes because I don't like seeing shit like this.

I have been a member for 19 years here. You all helped me mentally through my nasty ass divorce. I ended up meeting peeps that have turned into great and best friends on here.

I have watched a lot of your kids grow up on FB - to see shit like this is heart wrenching man.

Prayers to you and your family through all of this.

[Kodos]

Originally Posted by PilotMan

omg, I missed this. There are no words. Fuck fucking cancer.

I missed that too. So sorry to hear this, Path. I'm at a loss for what to say.

[miami_fan]

Originally Posted by JonInMiddleGA

Today is wife's first follow up scan, to see if they see anything they shouldn't see.

That it's grey, rainy, ugh kind of day for the drive to Atlanta is just perfectly 2020. It fits perfectly with her diagnosis earlier in the week of osteoporsis and arthritis that has her hobbling on a bum right knee for the past couple weeks.

Obviously we're a million miles away from being the only people who've ever dealt with this sort of shit but, honestly, I don't even know how those who've dealt with this do so. I guess you just ... do.

Hope you have received the best news possible Jon

[JonInMiddleGA]

Thanks all, scan was fine & this time they managed to deal with her allergic reaction to the contrast dye beforehand (MUCH better than the nasty reaction afterwards last time)

And now, as these things go ... we wait. Unlikely to hear any results until Tues or Wed.

[Lathum]

Originally Posted by path12

Figured I'd update. Had the surgery and turns out I'm terminal, 5-12 months. Going through chemo/radiation in hopes of getting some more quality time out of it but so far it's not really taking.

Anyway, I always thought I'd be super scared but I'm not. Sad to leave of course, but overall fairly zen. I'm not one to ask why me.

Missed this the first time. I just don't know what to say. Had the pleasure of meeting up when we were in Seattle. Great guy. Seemed like I knew him for years, which I supposed we had. Hours of playing werewolf, etc...

I hope you make the most of your time my friend.

[saldana]

Hey all, its been a long time, but as Path said, kind of a testament to the enduring nature of this community, that i immediately came back here, and unfortunately knew what post to look for...

So sorry to hear your news Path...we are all way to young to be worrying about these kinds of thing...i hope you can maintain your zen and despite the shitshow the world is right now, find a way to live your best life

[tarcone]

Wow, so sorry to hear, Path, this was a gut punch. Someone I do not know except through a message board, yet this community is my favorite. And losing one of us is just devastating. God bless you. Live the next 5-12 months as bet you can. NO REGRETS!

[Honolulu_Blue]

Originally Posted by path12

Figured I'd update. Had the surgery and turns out I'm terminal, 5-12 months. Going through chemo/radiation in hopes of getting some more quality time out of it but so far it's not really taking.

Anyway, I always thought I'd be super scared but I'm not. Sad to leave of course, but overall fairly zen. I'm not one to ask why me.

Like others, I missed this a month ago. I lost my brother to cancer almost year ago now, so I do have trouble reading this thread from time to time. It’s all a bit too much.

I’m devastated to hear this. Your take on this and how at peace you are with it is really amazing. I really don’t know what else to say. It always sucks losing someone from this odd, little community. I’m just really sorry to hear this and wish the best for you and your family with whatever time you have left. If there’s ever an XCom 3, I’ll always be sure to have a “Path12” in my squad.

[tarcone]

Not sure where to put this as it really isnt cancer related but I will put it here.

My best friend from HS and my 20s, the dude that knows me better than anyone and still stuck by me has some sort of disease that is wasting away his body, just shutting it down. I mean this literally. He was living in Phoenix and the doctors thought Lou Gehrigs disease. He moved back in with his Mom and is going to the University of Iowa Hospitals and clinics, which are fantastic, and they said no it is not ALS. I called him a month ago, it had been awhile since I talked to him and he said it had move to his lungs. Which means his lungs were shutting down. I called him last night and he told me the doctors have given him 4 months to live. Shit. This is my man. WTF. I am devastated. This guy was the person who saw me through the good and bad in my 20s. He was always there. Life sucks and death sucks way more.

EDIT: And the doctors, all of them, still have no idea what is going on with him. There is no diagnosis.

[sterlingice]

I'm sorry - that's just scary and sad

SI

[Thomkal]

wow how scary that is tarcone, you and your friend are in my thoughts

[Kodos]

That's awful. I'm so sorry, Tarcone. Life is so hard.

[JonInMiddleGA]

Officially got wife's results today from last Friday's scan (she'd already talked to the NP and read the whole report in her 'portal'): no signs of any new/emerging cancer. So we exhale and start preparing for her next scan in early January (would be December but fuck it, we'll wait instead of doing it between Xmas and New Years)

Also met with the "pallative care team" today for the first time. That experience was fairly positive -- let's think of them as troubleshooters and facilitators -- certainly much better than the gloomy meeting with them that we were kinda prepared for based on the scarce explanation of their purpose we'd gotten so far.

So all in all good news from the scan, still working (her, me, all of us) on figuring out exactly how to process the roller coaster that goes with knowing your next ride is already booked. That's a process, for damned sure.

[JPhillips]

Good to hear, at least much better than the alternative. Take care, all of you.

[Lathum]

Thats great news Jon

[JediKooter]

Good to hear Jon!

[sterlingice]

Some good news in this thread. That must be a bit of a relief, Jon

SI

[Edward64]

[Thomkal]

Very happy you got some good news out of all of this Jon.

[tarcone]

Thumbs up

[miami_fan]

Good to hear Jon.

[JonInMiddleGA]

Originally Posted by sterlingice

That must be a bit of a relief, Jon

Oh brother, you ain't kiddin. And yet you have to figure out how to cope with good news too.

Okay, kinda long ass ramble coming here, but fuckit. Maybe TLDR for some but if there's the slight bit of useful to anybody (even if its just me) then it's worth the typing. I'm also gonna spoiler tag it, just to keep from feeling like I word bombed the flow of the tread. Nothing spoiler-y in it, I'm just formatting to make myself feel more comfortable doing it.

Spoiler

The "pallative care" lead doc today might be one of the few people I've met who could use a phrase like "I'm here to help empower the choices you make" and not sound absurdly pithy. It was like he knows it sounds corny and cliched and catch-phrasy but that it's also as good a one-sentence explanation of his role as anybody came up with. And him knowing how it sounds kept it from feeling hollow when he said it.

I mentioned previously here (I think) her having some knee pain, prelim diagnosis elsewhere saying arthritis. Instead of having the handy ortho doc on the team just look at her knee & poke around today (which he did), he also mentioned some kinda roller device thing, whipped out his phone, showed it to her on Amazon, and then found a YouTube video showing how it worked.

It felt real, practical, useful. It put meat on the bones of the whole "here to help" speech that we were given. And you felt like maybe they might deliver in a tougher scenario down the road some time, or at least that they might actually TRY.

That's something I've felt very little of from them during this whole past few months. M.D.s have been damned good at Emory as usual, the rest of the interactions we've had this time around I'm MUCH less complimentary of.

But tying that back to my comment about coping with good news. We're still learning how to function in our new three month increments.

I KNOW there's other people here who are much farther into that process -- something I just typed with fucking tears in my eyes if you want some blunt truth about -- but we're still trying to figure it all out. Emotionally, psychologically, we're barely toddlers about that, still a good bit away from taking anything resembling steady steps.

In the past week I learned that a) she'd been waiting to make her reservation for some DAR/historical/something conference later this year until she knew if she'd be in some kind of treatment, and b) that she'd already picked up a few Christmas gifts for some friends, just in case she wasn't in a position to be doing any shopping later in the year

That's the stuff I'm talking about having to learn. Just figuring out how you deal with the way this all changes how you look at everything. You do it, but it's a mindfuck when you realize that you're doing it.

The tie to the knee pain thing? The doc that's the team lead asked her something like "what are you going to do with the time between now & your next scan?" She answered something like "live my life, try to not think about the next scan until about two days before, and then worry like hell until I'm on the other side". Doing a couple things she wanted to do, like that conference thing, are easier without so much knee pain so he tried to see if they could help with the knee pain, or in other words "helping empower the choices she made".

As skeptical as I was about that half of the two separate appointments today -- mercifully they were on the same floor of the rather sprawling campus -- I have to admit that it does make you feel a little better knowing that's the guy in charge of pain management down the road if/when that becomes needed.

[sterlingice]

I have no idea what it would be like to be in those shoes and pray I'm never in the position to find out. I live life assuming I'm either getting around 90ish years (3 of my 4 grandparents made it that long and the one who didn't was a longtime smoker who still made 80ish) or I'm going to die quick (car accident, whatever) and then it won't matter. And I know that's all made up - there's no way to know the hour. But it's the assumption that helps me sleep at night.

I have seen some videos about "scan day" and the mentality that goes into that sort of quarter-to-quarter living and I don't know what I'd do. Anyone in this thread is a stronger one to deal with it than anything I've done. Thoughts and prayers are with you and it's heartening to see the good news.

SI

[thesloppy]

Nice!

I can empathize with that feeling of shock & relief from getting an a remarkably good doctor/clinic after you've been numbed by a parade of everything else.

[Breeze]

great news Jon...

[spleen1015]

Really glad you got good news Jon.

[Kodos]

That is great to hear, Jon. I hope you continue to get news that is as good as possible in the future.

[PilotMan]

I have a very small family. Only 4 first cousins in total, and no other brothers or sisters. We've all been fairly distant from one another, but with Facebook I've gotten to be closer to my youngest cousin. She is the closest thing I have to a sister. She lost her mom to cancer as a teenager, and just lost her dad this year. Her mom's loss raised a great deal of anxiety for her and her own situation and she's been very aggressive in seeking out professionals for any chance of her getting sick. Well, this year it struck. She's not even 40 and was diagnosed with stage one breast cancer a few weeks ago, however the type that she has is very aggressive. During the full body scans they found it had spread to her lymph nodes, and that the mass in her breast was bigger than expected. She starts chemo very soon, and even though she is in good spirits, I know that she's worried. We are very worried.

I wish we could travel to them and check in or help, or something. I am worried for her daughter who has her own set of anxiety issues. Her husband is great and I know will look after and support them, but damn, this was not something that anyone had on the radar right now. It's a very helpless feeling.

[spleen1015]

That sucks. Best wishes to her and your family.

[JediKooter]

Sorry to hear about your cousin, PilotMan. Hopefully everything will be ok.

[Kodos]

Oh man. That's terrible. I hope she'll be okay.

[Ksyrup]

Just saw the sad news that a long-time internet friend passed away from leukemia Tuesday. I knew he was sick but hadn't seen recent posts (thanks to FB's crappy algorithm, you never know why). I've known him for 20 years, we used to trade burned CDs of stuff we thought each other would like for years. Really cool dude, remarried a few years ago, kid in high school. Just sucks. RRIP J-Pop.

[sterlingice]

Man, I hate when this thread is bumped. Sorry, PilotMan and Ksyrup

SI

[MizzouRah]

Originally Posted by sterlingice

Man, I hate when this thread is bumped. Sorry, PilotMan and Ksyrup

SI

Me too.. thoughts and prayers PilotMan and Ksyrup.

[AnalBumCover]

My brother completed his chemo treatments and rang the bell today. Something to be thankful for this holiday season.

[PilotMan]

Originally Posted by AnalBumCover

My brother completed his chemo treatments and rang the bell today. Something to be thankful for this holiday season.

Great news ABC

[Thomkal]

Most certainly ABC! Great way to start the holidays!

[JonInMiddleGA]

Glad to hear it ABC

[miami_fan]

Originally Posted by AnalBumCover

My brother completed his chemo treatments and rang the bell today. Something to be thankful for this holiday season.

Really good news. ABC

[tarcone]

Awesome, ABC. Celebrate greatly this season.

[Edward64]

Originally Posted by AnalBumCover

My brother completed his chemo treatments and rang the bell today. Something to be thankful for this holiday season.

Great milestone for your family to celebrate.

[JonInMiddleGA]

Not a post I wanted to type but y'all have been here so here goes

Some of you know that the past few months they've been trying to figure out what combination of arthritis & osteoparosis was causing my wife to have increasing pain & difficult walking. Maybe 10-14 days ago, her regular ortho doc shot the knee with cortisone but to limited effect, meaning likely a hidden muscle tear (as that downgraded arthritis as the cause).

Sunday morning as she shuffled her way to the bathroom with her cane, her right leg simply gave out / quit. Luckily she landed on a large footstool. A couple hours of figuring how, we got her to the ortho, expecting the muscle tear to be obvious.

Instead, what x-rays revealed was a sizable lesion at the top of her right femur. Ortho was frank that it was almost certainly a sign of bone cancer & that her femur was so compromised that it could snap at any moment.

He did some back channel work, got Emory to agree to take her in through the E.R. (since that's where her cancer docs already are). We delivered her around 7p Sunday. 16 hours later we get a sliver of hope and some not so good news.

First, there is at least a CHANCE -- however slim -- that the mishapened bone mass could turn out benign. Unlikely, but at least POSSIBLE.

Bad news: somewhere between x-rays in athens & x-rays at emory, her femur snapped, right at the very top just short of where it go to the hip. Surgery is planned for later today to repair that.

There are a ton of obvious questions -- about what this is, when it began, why it took months to be found -- that I have no answers for at this point. Nor do I have the luxury of worrying about.

This is by far the worst scenario we've faced and the outlook seems very grim.

Will & I are home - after a night in the nearby hotel - waiting further updates on the surgery and whatever else they may tell us.

Information has been sparse, the only update we got between 7p & 6a was that she got a morphine shot around 10p. The next was that she was transferred to Emory Midtown (the old Crawford Long I believe) from Emory Main (Decatur) as that's where they've put all the bone docs. We didn't get anything else until nearly noon when a kind switchboard operator on the ICU floor came out to our car, got wife's phone charger & marched it in to her (battery had died somewhere around midnight)

That's when her duty nurse (who failed to answer 3 calls and 2 messages) happened to come in & was able to give us most of what I've shared here.

Information flow has been abysmal, the staff is mostly surly (aside from that angel of a phone answerer), and we're twisting in the wind by & large. Wife said virtually all her treatment had been similar thus far

Things look & feel pretty bleak here, your prayers are much appreciated.

edit to add: for those of you who engage me on other platforms, please keep this quiet. The circle that are aware is extremely small & I hope to keep it that way until such time as she indicates any other intention.

[Ksyrup]

Awful news, sorry to hear. Prayers up.

[albionmoonlight]

I'm sorry, Jon.

[miked]

Wishing you luck. Emory has very recently decided to scale back to their no-visitor policy and it is moving through the various channels. People are on edge because of the COVID surge, not to say that surly people are ok and you should not be frustrated. Just that many of these things are changing daily and even the staff are a bit confused.

[Breeze]

Praying for you guys.

[sterlingice]

Damn, Jon. I'm so sorry. Prayers for you, your wife, and your famly

SI