F*^$ Cancer

[JPhillips]

Keep fighting guys.

[JediKooter]

Welp, surgery is done. Man they took out way more of my arm than I expected. I was thinking it would be about the size of a quarter they would cut out, but, going from the lines the drew on my arm, it went from one side of my arm to the other with a big chunk taken out in the middle.

Won't know if they got it all though until probably the end of the week. Now the pain is kicking in from my arm and they (and this gave me flash backs to when I was in the military) prescribed...tylenol.

Thanks everyone for all the thoughts and encouragement! It goes a long way.

[Kodos]

Ouch. That sounds sucky. I hope they got it all and you recover quickly with minimal scarring.

[JediKooter]

Originally Posted by Kodos

Ouch. That sounds sucky. I hope they got it all and you recover quickly with minimal scarring.

Thanks Kodos! I take the bandage off this afternoon and will see how much was really done to it.

[JediKooter]

Well that was quick. Had the surgery on monday and got the results back today that apparently they got it all, but, only time will tell. Follow up in 3 months to see how things are going.

Surprisingly, I have absolutely no pain where they took a big chunk of my skin out.

[thesloppy]

Sweet!

[miami_fan]

Originally Posted by JediKooter

Well that was quick. Had the surgery on monday and got the results back today that apparently they got it all, but, only time will tell. Follow up in 3 months to see how things are going.

Surprisingly, I have absolutely no pain where they took a big chunk of my skin out.

Good deal!

[Thomkal]

yay Jedi!

[JonInMiddleGA]

Originally Posted by JediKooter

Surprisingly, I have absolutely no pain where they took a big chunk of my skin out.

Woot

[sterlingice]

Sounds like good news!

SI

[Breeze]

excellent news.

[JediKooter]

Originally Posted by thesloppy

Sweet!

Indeed it is. Glad this part is over with.

Originally Posted by miami_fan

Good deal!

For sure! Now if I could just stop hitting my arm while I try to sleep, that would be awesome.

Originally Posted by Thomkal

yay Jedi!

Oh yes! I can now say that my scar is from a lightsaber.

Originally Posted by JonInMiddleGA

Woot

Definitely a relief. Hope everything is getting better on your end.

Originally Posted by sterlingice

Sounds like good news!

SI

It does indeed. Doc said the 1st year is when it would be more than likely it can possibly come back, so I'm hoping 2021 isn't as slow as 2020 was.

Originally Posted by Breeze

excellent news.

It definitely is. As much as I hate going to the doctors, I'm glad I did this time.


Thank you everyone for the thoughts, wishes, good vibes & prayers. It is all appreciated way more than I can express.

[MizzouRah]

Great to hear Jedi!

[JediKooter]

Originally Posted by MizzouRah

Great to hear Jedi!

Yes indeed, definitely a relief!

[JonInMiddleGA]

This isn't a post I'm entirely ready to make, and I know I won't do a great job with it but I feel like I need to try just to get it done. Forgive the format, it's the best way I can keep my thoughts organized right now.

Past couple of weeks my wife's progress in physical therapy has been slowed by what was thought to be a strained/pulled quad muscle in the bad leg. Some pain, limited mobility, sort of set her back from her peak which had seen her getting close to being transitioned from using a walker to using a cane. That also caused a delay of several days in going for the consultation with the local doctor that will be handling her radiation treatments, she couldn't really manage our front steps or try climbing into our SUV.

The past week was to be a major one, radiation meeting on Tuesday and then a trip to Emory on Friday for a PET scan, bone densifier treatment, and gameplanning with her lead doctor were all on tap.

Tuesday -- she made it out the door and into the car (under the watchful eye of her physical therapist) and off we went. That's a 15 minute ride give or take.

We arrive and she has a lot of problems getting out of the car (a process we've done successfully once previously). I mean a LOT of problem, the leg was uncooperative with her "normal" movements and the pain level was intense. Finally needed staff help just to get her out and into the wheelchair. Over the next 2+ hours, everything was very difficult. On the table, off the table, back to the car. The radiation doc had good news though, only 10 treatments planned, much less than we expected.

He did make some (now) ominous comments, including "I see why you're in so much pain", "there's so little bone left at the top (of the femur)" and "can I write you anything to help?". His concern was impossible to miss.

Got home, started to ease her way up the front steps and the leg just ... quit. A carbon copy of the December morning when it eventually snapped, the leg just didn't follow her commands, manual movement of it was excruciating. Finally had to call 911 to get EMTs to help get her unstuck from the first step, back into the house and into her bed in the den.

From there until Fri things have been a shitstorm of deteriorating condition, questionable communication with doctors, insurance buggery and bureaucratic hell.

Obviously can't personally transport to planned appointment on Friday, 911 can't transport farther than the local e.r., private transport services all refused to take the job (excuse was the steps out front, I'm told off the record by drivers that the likely reality is that they simply "didn't want the hassle of dealing with Emory"). Emory social worker finally saying "we don't know HOW to get her here"

2+ days of dealing with the stupid "portal", meanwhile her condition worsens at home. Pain increasing, mobility down to non-existent -- she managed to briefly stand once at her walker once per day so we could deal with umm 'hygiene". Mind you this is the same person who just navigated our front steps 2-3 days prior.

Finally the word comes from the team at Emory: call 911, get her transported to the local e.r., then we can transfer her from there to here (because under contract, the official ambulance service for Athens can't decline a hospital-to-hospital transfer)

Gets to e.r. Fri afternoon ... they start giving her morphine, do xrays ... and try to send her home "it's a mess in there but I don't see anything specifically wrong". We follow our instructions, get them to page her lead doc, they schedule a 'dry' cat scan ... and try to dismiss her back home AGAIN despite giving a 2nd morphine shot in two hours. "Just don't see what's causing this". Another consult with Emory docs and they negotiate it to "admit her, keep her comfortable, and we'll take her via transfer asap"

The gets her through Friday night. Saturday morning, hospital AGAIN tries to send her home, Emory not being ready for the transfer, we're told "they keep saying something about 'protocol'. ANOTHER discussion with her emory doctor team (at our request) and the day sort of rocks along with no further news. We figured it was a good sign that they took her Sunday meal preferences around 5p.

As luck has it I had gone for a brief visit just before the end of limited visiting hours and was about to leave around 7p when a doctor came in. He wanted to apologize for not seeing her in person earlier, he's in charge of the floor (she'd been put on their orthopedic floor), assured us he'd been involved all day, etc.

In the conversation he says "it's difficut with such a sizable soft tissue mass blocking our view of the bone ... "

{BLINK} {BLINK AGAIN}

And that's how my wife and I learned officially that she has a new tumor, rather obviously malignant by definition(since it's clearly been growing at an alarming rate)

So here's the deal medically: the mass is literally ... in front of (?) ... the same spot on the uppermost femur that was heavily damaged in December. They couldn't see the condition of the bone itself because it's blocking their view. There are no orthopedic cancer surgeons/ doctors in our area, that's only found in Atlanta (Emory) or Augusta. They don't have anyone locally who can (or would, since she's already under another doctor's care) treat her or even diagnose further. "You need to be down there -- that's where I'd send my own mother if this happened -- you're their patient, this is their past work, they need to get on this"

Here's the deal bureaucratically: Emory refused her transfer yesterday because of insurance guidelines, they aren't allowed to do a "lateral transfer". That means, we're told, that she's on a regular floor now & would be admitted to Emory on a regular floor .. that's lateral, and unapprovable.

Yes, she's being denied admission to Emory because we followed their instructions and got her admitted (with their help) here in Athens. #SMFH

Their request is that she be dismissed and "we'd prefer she come into the our clinic on Monday or whenever she can, though she could go to our e.r. maybe". #SMFHAGAIN -- you want them to send her home? W.T.F? She's immobile, on round the clock rotation of morphine & oxy to manage her pain, the leg is in legitimate danger of breaking AGAIN .. and the advice is "send her home"?

And the issue that kept us from seeing them directly on Friday still remains: So far no one has been found that will do a medical transport from Athens to Emory. Emory couldn't find anyone. So far (though they're going to be more involved starting Monday) Athens can't find anyone. She's in no condition to be moved by personal vehicle.


She's, at the moment, stuck.

Nobody here will treat her because she's Emory's patient, and #W$%@#$ Emory's answer thus far has been "send her home, she should obviously come see us whenever she can". And every doctor with eyes on her agrees it'd be unsafe to send her home.

So we're in a holding pattern today. Efforts to solve the practical issues will really go into another gear on Monday( great, a holiday of course). The doctor we saw last night turns out to be a very high-up locally (head of TWO departments) who had us take a photo of his ID badge with this instruction "if ANYBODY comes in here making noise about kicking you out, show them my picture and tell them that'll only happen 'over his dead body' That should solve it, there's nobody walking around this hospital on Sunday that would dare cross ME." (I became a pretty big fan of this guy quickly last night, as you might imagine)

So we know we're facing some major stuff here. Obviously the cancer is aggressively causing problems again .. and we can't even address that because of bureaucratic hell, which we've already been trying to resolve since Tuesday afternoon.

It's a completely clusterfuck, we're sick with fear & worry, and the path to improvement feels pretty dimly lit right now.

I'll be frank: I ain't doing real well FOFC, I'm doing the best I can but that's just not very good right now. Keeping my shit together is pretty much mandatory but it's getting to be a very narrow run thing.

[PilotMan]

You're at the point where it's time to involve your local politicians to try and move things along. Contact all your local state reps and tell them what is going on and how badly your situation is being handled. Also maybe consider looking into a lawyer that can represent you with the hospital and hold the threat of a lawsuit over their head for mismanagement and pain and distress. That's exactly the path that I'd take. You're beyond beating your own head against the wall over this. It's time to move to the next level, because you don't have the luxury of time and you won't regret the outcome.

[sterlingice]

John, I'm so sorry. That was hard to read so I can't even imagine what living it must be like. I'm sure you know that all of our thoughts and prayers are with you.

SI

[JonInMiddleGA]

briefly -- just got a call from her, the transfer has been approved

time TBD maybe an hour, maybe tomorrow, dunno

but they came to her room to tell her she didn't have to do anything else. They talked to sarcoma team's #2 this morning and whatever was needed (apparently) got done

(now as long as some bureaucrat doesn't re-fuck anything ... )

At least now maybe we can refocus on health instead of being caught in a modern day Joseph Heller novel

edit to add:
"Everyone in my book accuses everyone else of being crazy. Frankly, I think the whole society is nuts – and the question is: What does a sane man do in an insane society?""
Joseph Heller on Catch 22

edit again to add: further update - good news - in post 626

[Lathum]

Jesus Jon, sorry to hear. Hopefully the situation improves fast.

[Thomkal]

Man Jon what an awful story-seems like they care more about the hospital bureauracy than the patient. I was going to echo PM's comment about getting a lawyer involved-the threat of a lawsuit seems to get many gears unstuck. I saw your update, glad things finally start to be moving in the right direction hopefully. Again I'm so sorry that you and your family are going through this.

[GrantDawg]

I am so sorry for the bad news and the headaches it brought, Jon.

Sent from my SM-N960U using Tapatalk

[rjolley]

Jon, very glad to hear they've gotten their heads out of their collective asses and have gotten this straightened out. Hopefully, everything goes smoothly from here.

[Swaggs]

I’m so sorry, Jon. You’re doing your best. Hang in there.

[MizzouRah]

Sounds like a fcking nightmare Jon, I am glad to hear the transfer was approved.

[bhlloy]

Really sorry to hear that Jon. Hope everything works out with the transfer.

[JonInMiddleGA]

Just a nighttime update. She departed en route to Emory Sunday night just before 9p. That's fine, she misses daytime traffic AND they can get started figuring things out sooner on Monday this way.

One other note, a beacon of hope for humanity (medical division) amidst all the madness. That doctor I mentioned, the one we met Saturday night that committed to trying to help?

A nurse mentioned that she got to work today and found an unusual note scrawled in HUGE letters on the front of wife's chart "DO NOT DISMISS THIS PATIENT" with his signature. Nurse "I've never seen THAT before"

Note #2 -- the resident who had been tasked Sunday with handling the transfer on the Athens end of the deal mentioned that doctor (his ultimate boss) called him no less than four times before noon to make sure he was on top of things.

Note #2b -- today was our new hero doctor's day off.

[BYU 14]

Jon, sending you and the wife positive vibes my friend and this new Doctor sounds like a real positive inclusion into your wives treatment. I can't imagine what you all are going through, but this latest news certainly seems like a much needed beacon of hope.

[JonInMiddleGA]

Originally Posted by BYU 14

Jon, sending you and the wife positive vibes my friend and this new Doctor sounds like a real positive inclusion into your wives treatment. I can't imagine what you all are going through, but this latest news certainly seems like a much needed beacon of hope.

He's out of our lives now (presumably anyway) but he was a Godsend at a critical juncture.

For every 5-10 really shitty ones, there's the very occasional brightly shining amazing ones (doctors, human beings in general perhaps).

That's juuuuust enough to keep hope alive, remarkable how that happens.

[Vince, Pt. II]

Damn. Echoing others' thoughts here. That sounds awful to deal with, and I'm glad things are moving in a more positive direction now.

[albionmoonlight]

Continued thoughts and prayers, Jon

[Edward64]

Sorry you, wife and son are going through this. Hope things get better now.

[Breeze]

Sorry about your ordeal, that's horrifying. Continued prayers.

[Kodos]

I'm glad things have taken a turn for the better with the one doctor's assistance. Still praying for your wife and you. I'm so sorry you are all having to go through this, and I hope it turns out as well as possible in the end. Hang in there and don't lose hope.

[JonInMiddleGA]

I want to share something briefly in case it might help anyone in this thread who faces some similar clusterfuckeration in the future.

Talking to wife last night, I found out how they got around the lateral transfer restriction: she arrived and was admitted straight to the surgical floor. (where they stick the patients awaiting surgery, your local naming conventions may vary). Completely legit afaic, that's the next likely step anyway.

I'll try to remember to update this post with whatever we learn today, to cut down on the number of thread bumps. But just in case it ever helped anyone, I wanted to share that bit of bureaucratic sidestep.

[bhlloy]

So I had a post chemo bone marrow biopsy done today - should get initial results on Wednesday or Thursday, which is obviously stressing me out.

Honestly, at this point I really just want to get home, another month+ in hospital with no visitors (which is what the end result would be if it isn't in remission) I'm honestly not sure how I'd do at this point. I've done OK so far but I'm getting pretty close to breaking point - need the light at the end of the tunnel right now.

[JonInMiddleGA]

Originally Posted by bhlloy

need the light at the end of the tunnel right now.

Prayers for positive light.

[JPhillips]

Prayers and all the good thoughts, too.

[MizzouRah]

Sending prayers bhlloy

[Thomkal]

Originally Posted by bhlloy

So I had a post chemo bone marrow biopsy done today - should get initial results on Wednesday or Thursday, which is obviously stressing me out.

Honestly, at this point I really just want to get home, another month+ in hospital with no visitors (which is what the end result would be if it isn't in remission) I'm honestly not sure how I'd do at this point. I've done OK so far but I'm getting pretty close to breaking point - need the light at the end of the tunnel right now.

You got this man, even if its another month, you can beat this.

[Honolulu_Blue]

Originally Posted by bhlloy

So I had a post chemo bone marrow biopsy done today - should get initial results on Wednesday or Thursday, which is obviously stressing me out.

Honestly, at this point I really just want to get home, another month+ in hospital with no visitors (which is what the end result would be if it isn't in remission) I'm honestly not sure how I'd do at this point. I've done OK so far but I'm getting pretty close to breaking point - need the light at the end of the tunnel right now.

It’s got to be incredibly hard to have to deal with all of this during normal times, I can’t imagine what it’s like during all of this. Just a really difficult physical, mental and emotional toll. It all sucks, but you’ve got this. We’re with you!

[miami_fan]

That is a helluva roller coaster ride on top of a roller coaster ride Jon. Hoping things smoother out a bit now.

[miami_fan]

Originally Posted by bhlloy

So I had a post chemo bone marrow biopsy done today - should get initial results on Wednesday or Thursday, which is obviously stressing me out.

Honestly, at this point I really just want to get home, another month+ in hospital with no visitors (which is what the end result would be if it isn't in remission) I'm honestly not sure how I'd do at this point. I've done OK so far but I'm getting pretty close to breaking point - need the light at the end of the tunnel right now.

I really hoping that you getting good news soon and you can head home bhlloy.

[Breeze]

bhlloy, praying for you...

[BYU 14]

Positive vibes your way my friend, i can't imagine the stress you are going through right now, wishing you all the best!

[Kodos]

Praying for good results and for things to improve for you, bhlloy. I can't imagine how you must feel.

[JonInMiddleGA]

Okay, we have a short term plan (as of this morning, which saw 2-3 different plans before one was settled)

They will begin radiation treatment at Emory, in-patient, asap.

The hope is that the tumor will shrink, thus relieving pressure on the bone, thus solving both her pain and mobility issues.

The timetable is pretty rapid -- start asap (maybe later today, maybe Wed, all depends on scheduling)

Improvement -- and by that I mean her back on her feet -- could be as soon as five days.

She feels like this is probably best first option, (and I agree), so we'll see how it goes and then adjust when/if need be.
-----

Procedurally, this stay has certainly seen significantly better communication with the staff and the patient directly. 5 visits from 3 doctors between 7a and 11a. The plan I described above is completely different from the one at 9a, and was tweaked (and approved) between 10a and 11a. But this time around, she's been very much part of the process which is great.

I won't lie, the docs are more optimistic about the improvement timeline than my gut is (but I'm intimately familiar with just how bad things got so quickly, so maybe I'm just gun-shy) but we're all on board with this route. Better to start treatment now, and in-patient, so they can react and respond in real time ... and without shuffling the patient all over the planet.

----
EDIT TO UPDATE: As of Tues afternoon, they've completed the "targeting" stuff they had to do as prep work, so radiation begins on Thursday. They're going with 5 rounds (half the 10 originally planned) at double strength the originally planned dosing. It'll be Thu/Fri then weekend off, wrap up Mon/Tue/Wed next week.

[JediKooter]

@Jon - What a frustrating roller coaster ride Jon. Something that seems like it should be easily done turning into a cluster like that would have definitely used up any good will and niceness on my part. Hopefully everything is now going much better for your wife and you.

@bhlloy - You got this man. Hoping you don't have to be in there for another month and can be home soon man. Sending many many positive thoughts and vibes your way.

[Kodos]

Sounds good. Best of luck! I hope this plan works well.

[bhlloy]

So the 14 day results came back and I won’t need additional treatment this stay, although the 28 day biopsy will have a lot more info on how well things have worked and how much disease is left.

So that’s positive news, as good as it could have been at this stage, or at least not the terrible news I was dreading. Thank you everyone for your positive thoughts and reinforcement, it’s greatly appreciated

[Honolulu_Blue]

Originally Posted by bhlloy

So the 14 day results came back and I won’t need additional treatment this stay, although the 28 day biopsy will have a lot more info on how well things have worked and how much disease is left.

So that’s positive news, as good as it could have been at this stage, or at least not the terrible news I was dreading. Thank you everyone for your positive thoughts and reinforcement, it’s greatly appreciated

Very glad to hear that!