F*^$ Cancer

[rjolley]

Great news, Jon! Glad to hear things are progressing positively.

[JonInMiddleGA]

Originally Posted by sterlingice

What a great update!

Is the genetic marker one of the BRCA genes?

Yep, BRCA 2.

The additional genetic testing in a cpl weeks is to try to determine -- as much for knowledge base as anything else --whether she's had it since birth OR if the apparent mutation is only present due to the existing cancer. (If I understand it right, that'll tell them whether she had a mutated/faulty gene all along or not).

The unexpected response to chemo -- which far exceeded the norm for the now-debatable sarcoma diagnosis ... but ALSO exceeded the norm for regular ovarian cancer ... has him and some other docs intrigued best we can tell.

It's very much like "okay, thrilled that it worked ... but we'd like to know more about WHY it worked, so whatever we can piece together for future reference would be kinda great"

[BYU 14]

Great news Jon, so happy for your family, I know this has really worn on you all and I can't think of a better gift for the holidays.

[flere-imsaho]

Great news Jon! Enjoy the moment!

[Lathum]

Glad to hear Jon. I have to get phlebotomies every 3 months at an infusion center and I love when the bell gets rung

[Edward64]

Great news. Still wishing you guys the best.

[Kodos]

Glad to see a very positive turn with your wife! Best news I’ve heard in a while!

[JonInMiddleGA]

Originally Posted by Lathum

Glad to hear Jon. I have to get phlebotomies every 3 months at an infusion center and I love when the bell gets rung

Have to admit, having seen and enjoyed others doing it, it was pretty cool to be on the other side.

[Breeze]

awesome news Jon.

[tarcone]

Great news! Whoop its ass

[miami_fan]

Great news!

[JonInMiddleGA]

So, uh, a funny thing happened on the way to kicking cancer's ass.

This update is partial, still a few days away from knowing definitive stuff, but since I opened the subject in the mental health thread, I'll update some new details that have emerged since last night.

For those who didn't see my posts last night, here's the background

she's hospitalized tonight, we're waiting word from a CT scan but right now it's suspected that she had a mild stroke this afternoon as Will took her in for her second try at a PET scan .... No lingering effects, vitals are normal and stable within three hours of the incident (which involved her starting to get out of the car and instead just sort of sliding to the floorboard and then to the ground) ... And the real shitty part is that a mild stroke is better than some other things that might cause sudden loss of control of the left arm and leg.

Since last night

-- the CT scans were inconclusive
-- follow up MRI on her head was also inconclusive as to yesterday's incident

2 neurologists have looked at the results, agreeing that she has had a small stroke at some point in the past (a year? thirty years? no way to know apparently)

And literally as I'm typing this, we get more of an update.

The neuros question of "new stroke" vs "seizure" vs "brain tumor" that I was about to explain has apparently been settled.

We're told in the past hour that there is a 2 cm tumor either attached to her brain or trying to attach to her brain. Normal course of treatment would be surgical but that waits until a new PET scan tomorrow and the guidance of her existing superdoc (he's legit amazing, we want no one guiding us but him)

Scan is set for tomorrow, then we await guidance and whatever treatment(s) lie ahead.

And yeah, (obviously?) this jumps the line ahead of addressing the recurring issue in her hip or pretty much everything else.

My counsel to Will and her has been the same: let's try to stay in the moment, control what we can control, and act on the information as it comes.

That's all I got FOFC, I'm robotically functional at the moment, numb and stunned currently overriding terror and anguish. And in a couple hours, I head out for a Covid test. 2022 can just fuck right on off already.

edit: One thing that I literally have no idea whether it even matters, but in case ... I used the word "tumor" here, I believe their word may have been "lesion". I haven't the faintest whether that's significant at all.

[Solecismic]

I'm glad you have a doctor who's on top of this. And really sorry to hear the news. My father-in-law recently had to go through this and what helped for him is simply that he had that robotically functional mode and kept moving forward with all the appointments and care at home.

Lesion in this case may just be a generic word for the injury being experienced. The specifics they're describing wouldn't change.

[Thomkal]

Man Jon I'm so sorry your family keeps getting hit by medical issues. I hope COVID isn't added to the list. I think your approach to handling it is basically the best thing you can do right now.



{{big hug}}

[JonInMiddleGA]

Originally Posted by Solecismic

that robotically functional mode and kept moving forward with all the appointments and care at home

I'm trying my best to stay in that mode, but my grasp on it is tenuous.

I don't know if I can process this to be honest.

24 hours ago, we were worried about the returning tumor in his leg/hip.
Now? That might not even qualify as an afterthought.

As for the doctor, God that hospital is SUCH a mixed bag. He's fantastic, literal top of his field kinda guy. There are others on staff that would be legitimate peers in their own field.

Aaaand then there's the motley assortment of fuckwitted underlings at every other level.

Where else on the planet could a patient literally collapse to the ground AT THE FRONT ENTRANCE OF A HOSPITAL in broad daylight and it take up to a half hour before any medical assistance showed up? Her on the ground was being handled by our son and one of the valet parking attendants.

You know that old saying, about how "things happen for a reason". As bad as I felt that, once again, unexpected catastrophe struck on a seemingly mundane day that Will handled instead of me, there was a moment where I understood why this one was on him rather than me.

Once they finally took her to the ER, they parked him in the ER waiting area.
Since we couldn't reach superdoc by phone (his office is literally 18 floors above the ER, same building), Will asked the ER desk if he could go up there and notify them, then return. "Sure, not a problem. Just exit through that door over there, then when you come back, come to that other door over yonder"

He goes up, gets word to superdoc, returns ... and they tell him basically that he has to fuck off, not allowed in the waiting area, too bad so sad but fuck off.

And that's why he was there instead of me .. cause I'd still be in custody being held without bond.

[JonInMiddleGA]

Originally Posted by Thomkal

Man Jon I'm so sorry your family keeps getting hit by medical issues. I hope COVID isn't added to the list. I think your approach to handling it is basically the best thing you can do right now.
{{big hug}}

Somewhere in one of the threads, I touched on that.

Will tested positive on Saturday. I'm going to be tested in about 90 minutes (to confirm what seems rather obvious at this point)
Wife was tested last night after being admitted, she's asymptomatic though a positive would be completely unsprising.

(He's already been cleared to resume normal activities with no restrictions, literally cleared at the same time they tested him, based on the timeline of symptoms.)

[Silver Owl]

So sorry you are going thru this Jon ... hang in there.

[rjolley]

Very sorry to hear Jon.

[Kodos]

Oh man. So sorry things have taken another nightmarish turn. I'm glad you at least have a doctor that you have confidence in to help you. Will keep praying for the best outcome and hoping for the best. You've got a lot of people rooting for you and your wife.

[bhlloy]

Fucks sake. So sorry Jon, stay strong man.

[miami_fan]

Man, the ups and downs are nauseating for me and I am just reading your accounts. I can't imagine how this ordeal is for you and your family.

Wishing all of you good thoughts.

[sterlingice]

Continued prayers for you, Jon

SI

[JonInMiddleGA]

Originally Posted by miami_fan

Man, the ups and downs are nauseating for me and I am just reading your accounts. I can't imagine how this ordeal is for you and your family. Wishing all of you good thoughts.

I appreciate it.

You hit on something that I'm scuffling with right now.

How fucked is it that the good news would have been "merely" a stroke?

And how fucked is it that you gotta go through brain surgery just to GET to go back into chemo because of the recurring tumor(s) in the leg (and God only knows where else)

[cuervo72]

Well, shit. What everybody else said.

[Swaggs]

I really feel for you and Will and your wife.

It sounds like you are dealing with everything as well as you can by compartmentalizing and functioning through. That is the best approach when you are going through a traumatic event like this. At some point, you will need to go back and process all of this, but it’s really hard to do that while everything is still so up in the air. Maybe try to take some solace in thinking that this is the hard part of this situation - between all of the unknowns and feelings of helplessness. Stay strong and keep doing your best.

[Breeze]

Prayers for you and yours...

[JonInMiddleGA]

Medical update (though scheduling/timeline still remain very fluid, literally changed three times in about a 20 minute span earlier today)

Last night the neurosurgical resident came by to see my wife, luckily literally moments before Will was leaving for the night.

He brought reports, visual aids, you name it. Gave a very thorough explanation of what's where and what's what.

The 2cm mass sits riiiiight next to the "motor pathway" part of her brain. The key word there is "adjacent" rather than "on" or "in". To this point there's no sign of any permanent damage, which is why the high urgency to get the damned thing out of there. The margin is narrow but doable.

"I won't ever tell you there's 'easy' brain surgery ... but this is about as close to 'routine' as we get to do"

Her whole process from admission to release is expected to be 3-5 days (overnight observation, surgery, ICU recover for 24h, move to floor pending release by physical therapy department who certify that she's mobile, stable, etc). "This will be a LOT easier to recover from than your hip surgery was"

The timeline is still TBD, possibly as early as Friday, more likely next Mon or Tues ... with impending winter weather in the forecast starting Saturday night and lasting probably until Monday, just to make things a little more uncertain.

But, shitty as the situation is, at least we've been told it's not an absolute worst case scenario best they can figure.

edit to add a minor detail: In those reports, we did learn that her "old" (date unknown) stroke is classified as a TIA (Transient Ischemic Attack), better known to most of us as a "mini-stroke". That was unclear to us previously. There is also still no consensus on what sort of event she suffered on Monday afternoon. Possible that it was a second TIA and possible that it was a seizure related to the old TIA. If it was a second TIA, there's also no consensus about whether it was a random event (as the historical one appears to have been) or if it was triggered or influenced by the presence of the current tumor.

[QuikSand]

Wishing you all well, I cannot imagine how hard it must be.

[Kodos]

This stuff is gut-wrenching, even from afar.

[Lathum]

All the best to the family and the missus...

[albionmoonlight]

Thankful for the good news--understanding that things like "good" are all relative now.

I join so many here in thinking and praying and caring for you and your family.

[BYU 14]

I join with the rest of the community here in wishing the absolute best to your wife, yourself and Will. It is gut wrenching to read what you all are going through and I hope it as least somewhat therapeutic to "get things off your chest" here and see the care the community has for you all.

[JonInMiddleGA]

Originally Posted by BYU 14

I join with the rest of the community here in wishing the absolute best to your wife, yourself and Will. It is gut wrenching to read what you all are going through and I hope it as least somewhat therapeutic to "get things off your chest" here and see the care the community has for you all.

Honestly, I'm kinda ... lost.

I keep going back to something I think I typed in here (or the other thread) at some point this week, how I haven't processed this stuff this week and I really don't know if I can process it.

If too much reality creeps into my head, I very much fear I'm gonna break. And God knows, it keeps trying to.

These posts are, somehow or another, kinda like ... walls. They somehow help keep me from me from careening off into the abyss, at least for another few minutes. I type and there's some sense of completion (or something), and I can push the reality back unless the next assault wave comes at me.

I know I'm probably on the verge of oversharing but I'm just trying to hold on.

Y'all know how it is -- nearly everybody around to read this is an FOFC oldtimer same as me. We've all been here so long that there's a familiar sense of normalcy about posting here. And there's not much "normal" left in my world right now, I'm grabbing at whatever I can find.

[JonInMiddleGA]

Yeah, I'm dolaposting ... but I believe it's warranted.

So superdoc snuck by to see my wife this evening, bearing the report from her PET scan earlier in the day

"I don't know how you keep doing this ... your scan is BEAUTIFUL. The brain tumor is the ONLY thing that lights up"

Not even her hip -- which we were certain of (cause exactly the same issues before chemo started) isn't hot. His guess, pending the CT to confirm? Bone spur and / or floating residue from the repair surgery.

New plan
1) brain surgery next week -- delaying a couple days to try to get her added to a very promising clinical trial for after treatment
2) recover
3) single 40 mins dose of radiation to her head, to squash any stray cell that might fall off during the surgery
4) start chemo pills as planned
4b) adding immunotherapy every 3 weeks TFN as a secondary preventative

There are a couple of minor issues to watch. Her adrenal system seems to be pretty wonky and there's a vague shadow on her spine but "I'm pretty hopeful that the pill & immuno will squash all of that pretty quickly"

Gang, that conversation was not even among the dozens of possible outcomes for today. Literally not even a consideration for us in our wildest imaginings.

Yeah, there's still a friggin tumor camped on her brain so it's not like "cool, gtg" buuuut ... indescribably better than what we could have hoped (much less feared)

[rjolley]

Jon, dolapost all you want.

Glad you hear the good news and that you guys have a plan of attack for this latest setback.

Hope it all goes as even better than planned.

[PilotMan]

Glad you got some sort of news today that doesn't add to your stress and weight on your shoulders. You post all you want, the support is here Jon.

[Breeze]

Jon, are they planning to do GammaKnife on the brain tumor? If so I can walk you through what to expect.

[JonInMiddleGA]

Originally Posted by Breeze

Jon, are they planning to do GammaKnife on the brain tumor? If so I can walk you through what to expect.

We're going by to see Dr. Hoang in a few hours, I'll know more then.

I know there's discussion about getting her into a clinical trial using what Will explained to me as "like a radiation landmine in her head" (he heard the sales pitch, I haven't heard it yet)

[Kodos]

So glad you got better news than expected!

[JonInMiddleGA]

Nothing major, just didn't want y'all to be left hanging.

Got her out of the hospital on Thurs afternoon, drove over to the other facility (i.e Clifton Road for you locals) to meet with the neurosurgeon. That was fine, her pedigree is solid, personable enough, etc etc. That session was mostly spent doing close to 45 minutes worth of "permission slips" for everything from the procedure itself to her entry into a clinical trial they're part of.

She went into "the randomizer" early today, got the result we wanted (they'll do the insert-radiation-plates-during-surgery instead of do-radiation-dose-externally-two-weeks-later) .. though that combines with the Mon holiday to likely push her surgery off until at least next Friday, cause they don't store those "plates" on site, they have to be shipped in, they're not confident they'd arrive in time for surgery early Wednesday.

So for the moment we all try to rest a little, roughly expecting to hear "we'll do it Friday" sometime around Tue or Wed, with the possibility that on Tues we might hear "see you in the morning (i.e. Wed).

She's a little unsteady walking, using walker around here for safety purposes. That doesn't seem to be physical, seems like it's mostly pyschological after the trauma of this past Monday. Which is pretty understandable.

We're mostly hoping for a quiet few days, which the impending winter storm may kinda guarantee ... though way better if we manage to keep electricity on throughout.

[Edward64]

Hang in there.

[GrantDawg]

Glad they have her in.

[JonInMiddleGA]

She was dismissed from the hospital on Thursday (last) with a newly minted negative Covid test.

Severe sore throat began last night joined by a bit of a cough, Emory pushed everything (starting with a consultation tomorrow) back until the 28th under "suspected Covid"

We'll try to get a home test tomorrow and see what's what.
(I'm also miserably sick, though can't say whether covid, flu, flurona, or wtf)

But that's the latest.

Now we just hope nothing changes with the fucking tumor in 2 weeks time :/

[GrantDawg]

Man, that sucks.

Sent from my SM-G996U using Tapatalk

[thesloppy]

Hope y'all get some sort of relief soon.

[JonInMiddleGA]

Okay, so, a lot to unpack here (and I'm still processing most of it). I'll try to bottom line it

Successful surgery this morning removed that brain tumor ... which had grown from 2cm to 4cm in about 3 weeks

It's never great to get an update from a neurosurgeon that is clearly shaken by her experience ("I think we got it all, went to plan ... but MY tumors don't grow like that. We'll test everything but that ain't a normal tumor, that's a mestastcized sarcoma. In my whole career I've never seen the type of aggressive growth")

Scans leading to the surgery going forward today also showed a few new "spots" (their word) from brain to spine and I'm trying hard to not panic.

BUT, let's hold on to this for now: EVERY doctor other than sarcoma superdoc is always freaked out by her stuff. If I got the same report and concerns from a different doc, I might be less freaked out right now. So let's all try to stay calm and keep perspective until we hear from the most trusted source (who is already been brought back into full involvement)

She has not yet been told about any new stuff, cause you know, they literally just cut on her brain {checks clock} less than 8 hours ago.

Priorities?
1) Get her recovered from neuro surgery (norm is 7-10 days)

2) Get her ambulatory again, currently neither leg works on command ("bad" right leg has likely benign tumor impinging on past repairs, "good" left leg is not responding to her after another "event" -- believed to be a seizure -- that happened Wednesday morning literally hours before she left to be admitted to the hospital

3) Get her physical back in a position to do the tumor-control treatment that was already planned -- but delayed by brain tumor, Covid, et al

Will is flying back tonight to see her, at her request (demand? lol). My VERY short conversation in the recovery room with the nurse holding the phone consisted of "I want my baby. Get him here, I don't care what it takes". Sometimes in life, you say "of course" and you make that happen. (It didn't take much, was already something that had been considered anyway)

Pray on FOFC, it's all I can tell you right now.

Addendum, practical answers category: my ass is in Athens, because ICU rules (once she gets moved there, as is normal for this post-procedure) are ONE visitor per day. Period. She wants her kid, and so that's him.

We're flying him in, using Uber and stashing him tonight in the hotel literally across the road from the hospital. I could use a hug from that kid myself at this point BUT I ain't putting him through 4+ hours of road travel just to get one. For those who may not get the geography, to come to Athens is two hours past the hospital, which is just 16 minutes from the airport. It'd be crazy, so that's the plan we're going with because ... nobody needs voluntary insane behavior on top of this other madness.

[Kodos]

Ugh. I hate reports like this one. Hopefully SuperDoc can fix things. So sorry that all of this is happening. You'll continue in my prayers.

[spleen1015]

Best of luck Jon.

[Thomkal]

You're in my thoughts Jon

[MizzouRah]

Thoughts and prayers Jon.