F*^$ Cancer

[Kodos]

Good news!

[Thomkal]

Yay bhlloy!

[Lathum]

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

Great news!

[miami_fan]

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

Great news!

Does that mean you will be heading home soon?

[GrantDawg]

Glad they have a plan, Jon. And hope you continue to get good news, bhlloy.

Sent from my SM-N960U using Tapatalk

[bhlloy]

Probably a week plus still until heading home, but at least it’s not a month plus. Thanks again for all the support and kind words.

[JonInMiddleGA]

Outstanding bhlloy, a day with good news is a day with great news.

[JediKooter]

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 this man! And I hope the week goes by fast for you and you will be home before you know it.

[JonInMiddleGA]

update from the wife -- _mostly_ good news.

PET scan today revealed only one previously unknown hotspot -- a tiny (like 0.1mm) thing on a lymph node in the pelvis. Not actionable at this stage, will be monitored and we now have a baseline and it can't hide and cause problems unexpectedly.

Other than that, a something (tumor/lesion/growth ?) on her thyroid that she's know was there for at least five years, unlikely to be an issue though they're going to investigate more to get a better handle about it.

Otherwise, no nasty surprises were found. So TFN the focus will be on the known nastiness on the already bad leg. Radiation treatment 1 (of 5 planned) was today, 2 is tomorrow.

My own words rang in my ears today. As I said to bhlloy, "a day with good news is a day with great news" and considering how catastrophic today could have been, this was very good news overall.

Miles to go, but maybe it can be a straight shot for a while at least.

[Lathum]

Good to hear

[bhlloy]

So glad to hear that Jon, will be thinking of you both

[Thomkal]

That's some encouraging news Jon. Hope that radiation treatment helps solve the new problem with her leg so she can go back home.

[miami_fan]

Good news indeed.

[thesloppy]

[Vince, Pt. II]

Awesome news for both of you!

[Ben E Lou]

Good to hear, Jon. Continuing to pray.

[MizzouRah]

Yes good to hear from you both!

[rjolley]

Great news, Jon and bhlloy! Hope everything continues to go well.

[Kodos]

[JediKooter]

That is good news indeed!

[BYU 14]

Great day hearing good news from you both. Continued positive vibes your way Jon and bhlloy.

[JonInMiddleGA]

Update -- and it seems to be such GOOD news that I'm really not sure I can explain it very well. I'm also sure to leave out details because there's a lot of things about next that we still don't know. BUT ...

After 10 days in Emory and with today being the final of the five radiation treatments, the lead doctor came to see her this morning. The conversation can be summarized as "right now I don't see a cancer problem, I see a bone/leg problem ... and we've got to figure out how to fix that, get you back to having a good life"

The recently discovered tumor is downgraded to "not quite sure what it is". It's soft tissue, around two centimeters, whether it's cancer or some other tissue is now uncertain. Regardless, it's role -- in both her pain levels and her lost mobility -- is that it's going into what is basically a hole in the femur.

That hole is almost certainly damage that occurred back in December. It's creates a structural weakness -- risk of a full-blown break in the femur is still very high -- and having the tissue pushing on it isn't helping matters any.

The latest conclusion comes from the results of her PET scan, which sarcoma doc says "wasn't nearly as 'hot' as I expected .. there's activity there but it's not what I'd see if the cancer was raging". He's cautiously hopeful that "we may actually have the cancer on the run at the moment ... so let's use this time to get you back on your feet and walking"

How that's going to be accomplished is what they have to figure out. The short term likely involves intensive in-patient physical therapy -- likely staying within the Emory properties for that -- but the instability of the bone limits just how much that can do.

How much natural healing of the bone can/will happen is still TBD. How much can be done medicinally (if any) is still TBD. How much (if any) can be done surgically is still TBD. That's all what the specialists involved have to figure out, and then ultimately there'll be a plan to follow, adjusting as needed.

The specter of the cancer suddenly flaring up and interfering with plans for recovery always looms. That's a reality that's going to be with her forever ... but that chance can't stop the recovery effort. So, forward we'll go. Exactly HOW progress will be made is what they're now focusing on figuring out.

The bottom line good news is that one of the top doctors in the sarcoma field said there's very little on her latest scans and that the focus can shift toward raising her quality of life. Short of a true cure, that news is as good as we can get in a day.

[Vince, Pt. II]

Excellent!

[bhlloy]

Awesome news Jon!

[GrantDawg]

Amen!

Sent from my SM-N960U using Tapatalk

[JPhillips]

That's great news.

[JediKooter]

That is some very very good news!

[Kodos]

Great news! I hope they find a way to bolster the femur.

[Thomkal]

So no replacing her leg with a bionic one then? Bummer, Seriously Jon that sounds about as good a news as you can have right now, so happy for you guys.

[JonInMiddleGA]

Originally Posted by Thomkal

So no replacing her leg with a bionic one then? Bummer,

I suggested Elmer's Wood Glue and some sawdust for the hole. Haven't heard back from them on that idea though.

[JonInMiddleGA]

I sometimes use my posts here as the template for the updates that go to family/friends in message form. (I gotta be honest, it's the sort of thing I can only do by phone so many times in a day, I have to pace myself with it so messages & texts go to a lot of people)

Knowing I'd use this for other distribution led to something that might have seemed ... unusually worded / placed ... in the overall update so I'm gonna explain that bit here in case anyone raised an eyebrow.

Toward the end of the update I mentioned how there'll always be a risk of things suddenly escalating. That was stuck in there because in the past few days both my wife and I had realized that several people in the closest circle hadn't really grasped that reality.

With her particular type of cancer, barring a full-on cure, there's never going to be a "okay, you're good. See you for another scan in five years" moment. Heavy duty scans every 10-12 weeks for the rest of her life is the expectation (and for lower level scans more often than that TFN).

We've known that since last summer, and have had time to try to adjust our mindset to that. But I put that in here, amid the overall positive, to maybe try to get more of her innermost circle to understand it ... and to start toward being as (relatively) okay with it as we are. We figured out pretty quickly that the options to deal with it were either a) find a way to cope, or b) let it drive you nuts.

I just thought my thinking behind that segment bore explaining here, in case anybody wondered why I chose to go down that particular (admittedly kinda dark) avenue. (I feel like most of the FOFC understood that aspect, better most likely than some of her family & longtime friends)

[Breeze]

John, yeah I can attest it's a tough situation to be in, and you're right people don't really understand. I constantly joke about life 3 months at a time, as a way to inject some humor into the situation, but it also serves as a gentle reminder to the listener, that yes this was good news, but the news has limited shelf life. Hope you find a way that works for you guys to get people to understand.

[cartman]

Great news, Jon. Knowing, even when it isn't always the best news, is better than not knowing and having your mind wander off to dark places.

[JonInMiddleGA]

Feb 25 -- Emory Rehab refuses to accept her as a patient, reason for denial unclear (to us or her cancer doctors). Appeal process is begun. This didn't appear to be insurance denial, this was presented to us as the rehab center refusing to take her.

Feb 26 -- Cancer doc team member (not so) casually mentions that he's ordering new x-rays for her, in the hope that the bone doc/surgeon will actually look at them. They have no indication that he's touched her case at all since issuing the "zero load bearing" order a couple weeks ago. (that order is believed to be the reason rehab refused to take her). He has no way of knowing whether the radiation had any impact on the stress being applied to the bone ... and apparently even less interest in knowing.

March 1 -- she's transferred from Emory Midtown Hospital (Peachtree St) to Emory Rehabilitation Hospital (Decatur). Details of how that happened are still a mystery.
Details of what exactly the goals there are remain unclear to us as well. P.T. consultation seems to suggest that they'll focus on improving her mobility without using the bad leg (which remains that "zero weight bearing" order for another 2-4 weeks).

Absent any clear statements from literally ANYONE it feels like they're going to attempt to prep her for going home while still some distance away from recovery of the leg ... but that's just our best guess in the absence of any real communication (aside from bureaucratic horse manure)

There's a bone surgeon that is significantly closer to a come-to-Jesus meeting than he has any clue he's approaching. I'm about to reach the end of my rope with some of these motherfuckers, most only seem to move at all under significant arm-twisting from the most esteemed doc in the bunch, and since this is "a bone problem, not a cancer problem" he's unlikely to be as involved tfn. Well there's more than one way to twist an arm and I'm about to reach that point with this obstructive son of a bitch.

And at the heart & soul of all this frustration (and, frankly, steadily building rage), aside from engagement, is the lack of communication on key points.
I suspect this might be moving into territory where her progress toward recovery is better measured in months rather than weeks .... but I can only suspect that since nobody SAYS anything. Everyone has their own turf, they all try to avoid stepping on anyone else's ... but if one guy refuses to cut his own grass then by God SOMEBODY needs to trample that shit.

We're dealing with cancer -- and assorted complications caused by it. That should be stress aplenty for anybody, but it's rivaled if not eclipsed by the stress generated from bureaucrats and turf issues.

In the past 2-3 weeks, we've had over seven days of extreme stress caused by uncertainty due to bureaucracy. Each time that's happened, the eventual destination ended up being where it was originally intended to be ... just takes an Act of Congress to get problems far enough up the food chain to reach someone with the power (or guile) to manipulate the system.

Congress looks efficient compared to U.S. healthcare afaic.

[Kodos]

That must be incredibly frustrating. Hopefully somebody kicks some ass to get you some information and some help.

[Coffee Warlord]

Are you fucking kidding me?

As if my Dad needed MORE shit to deal with, he just got a fraudulent unemployment claim in his name.

[JediKooter]

Possibly identity theft?

[Coffee Warlord]

Entirely possible. I just managed to report it and freeze his credit on 2 of the 3 credit agencies. 3rd one didn't work online, but at least he only has to call one.

[JediKooter]

Originally Posted by Coffee Warlord

Entirely possible. I just managed to report it and freeze his credit on 2 of the 3 credit agencies. 3rd one didn't work online, but at least he only has to call one.

Good catch! But, jeez, definitely the last thing he needs to be dealing with right now. Rains it pours sometimes, sorry CW.

[Coffee Warlord]

He got through to the 3rd one, frozen, and he's gonna call his bank just to give them a heads up. But yeah, apparently it's a big problem in CO specifically, 'cause it's just so easy to file claims. Pain in ass.

[JonInMiddleGA]

Originally Posted by Coffee Warlord

Pain in ass.

You said it.

That sucks, and I'm sorry some asshole did that.

[JonInMiddleGA]

30 days after the cats last saw her, Vivi and Reese are happy to announce that Mary-Ellen returned home on Sunday.

2 weeks of Emory Midtown (which included her successfully completed radiation treatments) and 2 weeks of in-patient physical therapy at Emory Rehab Hospital, she's back in Athens... hopefully for good this time.

She remains on strict limits ("toe-touch only, zero weight bearing") for the bad leg. That's to protect the femur still dangerously weakened by the damage suffered back in December. I can say that her overall mobility and general strength are significantly improved compared to her return home back in January.

Pain management is still challenging, and is critical to her recovery, probably the most important thing at the moment as it dictates a lot about how much simple movement is possible. The margin between controlled and rampaging out of control is awfully narrow, though understandable since the amount of bone at the "neck" of the femur is still precariously small.

A quiet week ahead here we hope, as she enjoys the absence of 5am vital sign checks, persistent intercom announcements around the clock, and an expanded menu options at meal time.

Next week should include both a follow-up with the bone doc early in the week and the cancer doc at the end of the week. The former is for a re-evaluation of the bone situation, the latter is mostly for a regular round of scans and assessment. She's certainly well on her way to being the most "photographed" person of 2021.

But for now, rest and (hopefully) recovery are the order.

As always your love, concern, and prayers are much appreciated.

[Breeze]

Great news John...continued prayers for sure!

[thesloppy]

[sterlingice]

Without going into too much, the waiting and not knowing early on, is every bit as awful as advertised. And, like so many things in life, it's one thing to "know" and sympathetically get it and quite another to experience it.

SI

[bhlloy]

Awesome news Jon... so happy to hear that.

A couple of things in the last few posts really resonated with me. Amen to "not getting woken up at all hours for vitals and random hospital background noise" - unfortunately I'm back to my usual crappy sleep schedule now, but the first week of being home was absolute bliss to be able to sleep a solid 8-9 hours.

And SI... yeah there's more truth in those 2 sentences than anyone who hasn't gone through this will ever know man. While treatment sucks, it's the bits in between the treatment and waiting for results/next steps/things to start and the constant doubt and worst case scenarios that run through your head that is the worst part.

[Thomkal]

Yay Jon (and cats)

[JonInMiddleGA]

Originally Posted by bhlloy

Amen to "not getting woken up at all hours for vitals and random hospital background noise"

I'd guarantee she'd say the worst, by far, of any of it was the intercom system at rehab. It was used to locate one staff member or another at least 18 hours a day, and was at a confoundingly high volume.

It was in every single room AND the hallways.

Great for finding staffers.
Lousy for patients hoping to rest.

[bhlloy]

Ugh, that sounds pretty awful. I was shuffled around a few rooms during my last stay, the one in the middle was tiny and right outside the charge nurses station which was not conducive to not having noise 24/7 but thankfully they moved me after a couple of nights of me asking.

I didn't have the hospital intercom issues (other than fire alarm tests maybe once per week in the morning and the occasional code/rapid response at any time of the day) but that was probably offset by the infusion machine... at some point somebody did something to either switch it out or change something and it was an annoying buzz for at least the last 3 weeks... really not good for sleep. The first few nights without that were amazing.

Vitals/bloods were basically a "pick your poison scenario" - they would either do bloods at midnight or 5am (to make sure the doctor had the results for their rounds the next day) - but as vitals were every 5/6 hours, you were basically woken up both times anyway, just the bloods were a 5-15 min thing whereas vitals you could usually get back to sleep pretty quickly. In the end I settled on just getting them over with at midnight.

[bhlloy]

Originally Posted by bhlloy

So a quick update.. after a week and a half of more than a few ups and downs (that led to me being discharged last Saturday and told to come back outpatient in the week as I was so stable, then basically being rushed back in with fever and suspected pneumonia on Monday) I start chemo in an hour or so...

Got some very good news about prognosis earlier in the week and then some news that put a dampener on that - basically the downside is I will likely need stem cell in addition to chemo whereas for a while it looked like that wouldn’t be the case - but just taking one day at a time right now. Overall the prognosis for cure is still better than not at this time if treatment all goes well.

Still appreciate the thoughts of everyone and this place as another outlet for my updates. And hope you are on the road to recovery soon as well JK!

Revisiting this, it feels like the longest and shortest 4 months of my life since I posted in this thread. I got a transplant from my sister a couple of weeks ago, and so far everything seems to have gone smoothly. I'm having some stomach issues, and had a couple of weeks of really bad mouth sores and swelling but overall pretty mild and if nothing goes wrong between now and then I should be discharged on Monday.

From there it's probably going to be the most nerve racking 100 days of my life while they monitor me for the full engraftment of the new marrow and I wait to see if the disease comes back. Best numbers I was given today for the clinical study I'm on over the first year of results is 30-35% relapse rate which would be a relative death sentence. After that if things look good I'll still be limited for at least 3-6 months while my immune system continues to recover and have to avoid most people and monitor very closely for infection.

I know I should be grateful for how well things have gone so far (or that they haven't gone badly to this point) but man, it's a tough long journey. It's really hard to stay positive given how much I've been through and how much is still left to go. Fuck Cancer.