F*^$ Cancer

[JonInMiddleGA]

Still lots of miles to go but, positives beat the negatives for today.

Some fine motor skill improvement today, moved the left ("good) leg on command for the therapists, and just got word she's heading to a regular room and out of ICU later tonight (meaning nothing untoward in her routine required post-surgical MRI)

The beloved offspring will be ordering them dinner from UberEats soon as she gets to her new room

edit to update: Naturally, dinner plans went sideways when she got bedspins after moving rooms (her 5th different place to close her eyes in the last 36 hours) Consensus is that those, and a little confusion, are the impact of recent surgery, anesthesia, and some drugs today for MRI purposes sorta intersecting. Still, an overall win for the day to this point.

[rjolley]

Glad to hear the positives won the day.

[Thomkal]

yay Jon's family

[flere-imsaho]

Hoping for the best!

[Kodos]

Gotta enjoy the positive things when they come along!

[JonInMiddleGA]

A lot of slow moving details since my last update, I'll try to leave out as much of the granular stuff as I can

Bottom line: "superdoc" (her guy for the last 2 years) + brain surgeon + brain radiologist finally reached a conclusion on the working plan on Thursday afternoon

She'll do radiation for the removed + new/emerging brain tumors as an IN-patient right where she is. That eliminates the need to figure out transporting her while she's not yet able to even stand much less walk.

That process started this morning, radiologist visited and said they first have to construct a "mask" that's used during treatment (I gather that it's part aiming device and part protective for areas that don't need zapped). They'll do measurements today, get that started, and hope to start radiation next Friday (at least that was how she understood it). No schedule for how much/how many treatments yet, they'll figure that out while they construct this whateveritis.

Unfortunately, "rules" only allow her immunotherapy -- to try to corral the tumors elsewhere in her body -- as OUT-patient, meaning it has to wait until after radiation. That's not optimal but with some luck, it'll be ... okay.

She also can't get badly needed in-patient physical rehab -- in order to try to get walking again -- while doing radiation. Per the doc "not for any medical reason, rather just because there's NO rehab facility, not even the one we own, willing to deal with transportation for radiation"

Still, despite the blemishes, we're encouraged that after a week, at least there's finally a plan on how to move forward.

---
On a sidebar that's practical rather than directly medical, oh mercy me oh my how fucked up visitation rules are (again).

Today as it stands, I could not go into her room to see her if I tried. I'm the "Primary Contact", meaning I get any info/emergency calls and can call for info if needed.

What I am not is a "Care Partner". Her floor has a very strict Max 2 (only 1 at a time) limit for those, and those are Will and the family friend that took her for admission.

That friend was able to make a clothes and treats run on Wednesday, hopefully she can do another this weekend. Will is due to return home for a few days next weekend (in between a big paper this weekend and one in two weeks)

With my seemingly plateaued recovery from being sick, it sorta works out (minus the fact we could have daily emotional support in person for her with a couple of other lifelong friends that are in the area) but it's still unspeakably maddening just to get anyone to detail the rules, much less know that the patient's mental health is put under strain that could be alleviated some.

[MrBug708]

Time for my own (extremely new to me as well) story.
I had a endoscopy on the 3rd, to followup on acid reflux issues I've had off and on for the past 7 years. While the GI was looking in my stomach, he took a sample of a polyp he caught, about 6mm. This past Monday, I received a bunch of missed calls from my doctor, telling me to call him back. Finally get ahold of him and he is telling me that I have what is called a carcinoid tumor. I learned this is mostly an outdated term called a Neuroendocrine tumor (NET). So I was freaking out over it and a lot of it has to do with my friend passing away from stage four stomach cancer, the day prior to this info. Scheduled for a followup endoscopy for this past Tuesday, the 8th. The GI needed to mark/tattoo my stomach for where specifically the oncologist surgeon will need to cut some of my stomach out. I meet with that doctor this Tuesday. This past Thursday, the 10th, I had a CT scan for the rest of my GI tract, part of my lungs and liver as well, and thankfully nothing else showed up. Looking at the lab results, combined with my early research, this type of cancer is rare (6.7 out of 100,000 people diagnosed a year), it's extremely slow moving, and mostly non-fatal. I believe they caught it extremely early. Most of this cancer is discovered through symptons relating to the troubles it causes within the GI tract. Mostly constipation and/or other pain from it. I don't know how much that is true in my case, but it seems that's where Im at right now. Been pretty emotional for my wife, with a cancer diagnosis, our close friend passing away leaving a 5 year old and twin 1 year olds), and also losing her parents at (her) a young age. Having part of your stomach taken out is never ideal, but I think with the cards on the table, it's looking like a super best case scenario. NETs are tumors without the certain Neuroendrocine cells, which are cells that release hormones into the system. Never heard of it, it's still a relatively newer type of tumor, and there are a few specialists in the US, but quite a number in Los Angeles, so I'm fortunate there.

On a side note, the CT scan didn't pick up my appendix. The radiologist said I was post appendectomy, but I've never had it taken out. It's known to happen on rare occurence (1 in 100,000), where a person isn't born with one. I asked the GI if that was the case and he thought it was more than it wasn't picked up on the CT scan, which makes me somewhat worried that it missed something else.

Just need to vent, fill in nobody in particular. Tuesday, I should known a bit more about it.

[JonInMiddleGA]

Originally Posted by MrBug708

Just need to vent, fill in nobody in particular. Tuesday, I should known a bit more about it.

First, I'm sorry to hear. No matter how manageable, there's never a "good" time to hear the C-word.

Oddly enough, I know a little about carcinoid tumors as that's what my wife had hiding in a bronchial tube almost 20 years ago. Removed, kicked it's ass, got the cancer free official diagnosis in the appropriate time frame (I think it was five years)

And, NO, there is literally ZERO connection to that incident and what's she facing now. Nada, zip, zero, none. She just hit the bad luck lottery twice is all, literally everyone all along the way agrees that there's no connection so don't you dare EVEN think this is predictive in any way.

All the info you have is good shit, sounds like a prime case for somebody to give f'n cancer an ass whipping.

#FuckCancer

[Kodos]

Good luck, Bug. Wishing you the best. Kick its ass.

[sterlingice]

Originally Posted by MrBug708

On a side note, the CT scan didn't pick up my appendix. The radiologist said I was post appendectomy, but I've never had it taken out. It's known to happen on rare occurence (1 in 100,000), where a person isn't born with one. I asked the GI if that was the case and he thought it was more than it wasn't picked up on the CT scan, which makes me somewhat worried that it missed something else.

That is so weird - like not bad, but weird

SI

[Thomkal]

Unsolved Mysteries returns with Mr. Bug's appendix has disappeared, where did it go? I don't think I could be so positive about things with what you described there Bug. Certainly thinking of you in the days ahead-hope you kick cancer's ass.

[bhlloy]

Hang in there Bug. If you are looking for options for treatment, I can’t say enough good things about City of Hope.

[MrBug708]

Originally Posted by bhlloy

Hang in there Bug. If you are looking for options for treatment, I can’t say enough good things about City of Hope.

City of Hope has one of the NET specialists actually, and it's less than 7 miles from where I work currently. The GI didn't think I'd need much followup, but he's kind of like the Lane Kiffin of doctors. Probably has a hot wife, but his dad is the main GI guy in the group. But he found the cancer in the first place, so he's not too bad at all. He's been really communicative thus far. But I'll still likely meet with the specialist anyways.

[JonInMiddleGA]

It is with unspeakable sadness that I have to tell you all that we lost my wife Mary-Ellen Sunday night. Not to cancer as a primary, but to what is strongly believed to have been a sudden blood clot that went to her lungs, or heart, or both.

Will and I were with her when she passed, the last thing we believe she saw was him, the last thing she heard was us both telling her how much we loved her.

At 830 Sunday morning I got an update call with some of best results in multiple categories of concern that I'd gotten in the past week. Heart rate down, pain managed, white blood cells normal and no sign of any further infection, red blood info stable indicating that bleeding issues were at least under control.

An hour later, out of literally nowhere, they called to verify permission to intubate her if needed. Her breathing had abruptly crashed to dangerously low levels. 30 mins later they called to say Narcan had stopped further drops, leading to a belief that it was related to her medication. 30 mins after that they called to say the plunge had resumed and that she was being intubated after all. 2 hours later, the critical care doctor in charge called to tell us we needed to be there as quickly as possible and that "we're throwing everything we have at her to save her life but I can't make any promises".

8 hours later, minutes after Will and I returned from a quick 15 minutes cafeteria meal, her heart simply stopped, just as we'd been told upon arrival was the greatest risk and most likely outcome. They tried to revive her with the utmost efforts, to no avail.

I'll try to fill in a great deal of missing / incomplete information in other post(s) but as for now, I sincerely thank you all for the support and concern you've shown to both me and my family over the past couple of years. And I beg for your prayers, most especially for Will. The pain he's in right now is beyond description.

As a husband, I'm shattered beyond my own comprehension.
As a father, I'm heartbroken and heartsick beyond words.
As a human being, I'm broken beyond what I can even contemplate.

But one thing I've promised Will tonight: we will NOT let go of the great and many joys we were blessed to share with her. Nothing, neither grief nor fear nor pain, can ever be allowed to take those moments from us. We're on our knees tonight, and will be for a long time to come, but we will guard those precious things while we crawl until someday we can try to stand again.

[Solecismic]

Oh, no. I'm so sorry. It means a lot that you and your son were there.

[JonInMiddleGA]

Looking back to my previous update, I'm struck by the phrase "slow moving" because the 4+ weeks that followed were a whirlwind.

From that mid-February point
-- the radiation for the emergent brain "spot" turned out to be a single high dose. No prognosis on it was expected until May

-- she recovered in good fashion from the brain surgery itself, though that process last until early March

-- during her recovery from that surgery, previously small and relatively troublefree couple of ...spots ... on her right thigh began to swell and enlarge. Originally (and for many months) small protrusions that looked skin tags ("a cluster of skin tissue extending out from a tiny stem". Over a week's time, that swelled to the point that it burst/erupted, leaving a wound that Will described as looking like a small caliber gunshot wound. At the risk of being gross, when it popped the fluid landed 10-12 feet away from the bed, that's the sort of pressure involved.

-- that situation was treated with relatively low concern by the hospital, doctors assuring us that it was a fluid build up likely due to inflammation. That was based on a perfectly clean scan of the area done just less than a month prior, that showed absolutely nothing in that area. Wound care managed it daily, no sign of issues other than it being a tender and disturbing looking

-- with getting her mobility back still key to immunotherapy, she was finally sent to in-patient physical rehab (ironically, in the Buckhead section of Atlanta, only 0.8 miles from where we lived when we first married)

-- transfer day included "highlights" like her transportation being many hours behind schedule, resulting in admission to rehab at 1115pm and the following day a 19 phone call / 8 hour ordeal to resolve the complete lack of medication instructions, wound care instructions, or anything else following her to rehab. When I arrived after a panicked phone call from, she'd been without pain meds for roughly 16 hours and was in an unpleasant stage of morphine withdrawal.

-- despite such a rocky and disturbing start, the therapy got off to a reasonably promising start, 36 hours after arrival they got her on her feet (however unsteadily) for the first time in over 5 weeks.

-- more disturbingly however, the swelling on her thigh returned with a vengeance. First to about softball / grapefruit size, further onto cantaloupe size, eventually beyond that toward honeydew sized. Consistently, we were told it was merely fluid,though they attributed that to her existing lymphodema problem

-- on Tues March 8, the rehab wound care team examined the wound again with concerns about the fact it had gone from a small amount of clear fluid discharge to basically bleeding steadily for about 36 hours. They wanted to send her just down the street to Emory Midtown for the ER to examine and consider a pint of blood, but assured us "she'll be back shortly"

-- that night a couple hours after landing in the ER, they decided to admit her. The folllowing day a CT scan confirmed their shocking initial diagnosis: the now eggplant purple swelling (reduced back down to softball sized after all the bleeding) was actually a solid mass, with a very disturbing and dangerous amount of vascular structure. The bleeding was, they believed, from a vein(s) that was partially detached and basically leaking slowly (but increasingly) from the existing wound opening.

-- the following day she went into A-Fib, moving her to ICU for careful treatment and monitoring. A two stage plan was also detailed to us, with 5 doses of radiation to be followed by a return to chemotherapy due to "the rapidly advancing nature of her tumor(s)"

-- by Friday, we were dealing with: heart rate high, heart rhythm erratic, significant pain increase (ultimate resorting to Dilaudid on top of morphine and oxycontin to control), low blood pressure, a moderate infection indicated in the leg, 2 pints of blood administered due to blood loss, and semi regular nausea . Her first radiation treatment on Friday added sudden internal body temperature drops that led to literal teeth chattering.

-- the rest of Friday and Saturday were a bungie cord affair as all those issues ebbed and flowed between managed and deteriorating,back and forth multiple.

-- by the time we arrived, the ventilator was at maximum level and we were told that the three drug combo based around epinephrine was basically the only thing causing her heart to continue beating, and that if her heart stopped there was no reason to believe that it would ever stop stopping (i.e.they could revive through CPR or shock, but that if those drugs didn't prevent it from stopping, nothing would prevent it from stopping again and again)

And that was the journey to the horrible events of Sunday. I believe you now understand why I didn't update, the situation was in a state of chaos for essentially most of a month

[JonInMiddleGA]

Originally Posted by Solecismic

Oh, no. I'm so sorry. It means a lot that you and your son were there.

It was both horrifying beyond words AND a tremendous blessing.

To be in the position of making decisions about life-extending measures vs DNR orders is one thing. To be in the room throughout a CPR situation (5 - 6"rounds"? "cycles"? I don't know the terminology and the chaos made the procedure somewhat blurred) on a loved while AND being asked to make the call when to stop is an entirely different matter.

To have been there, to feel that she could hear us despite being in effectively a coma, to know that nothing was left unsaid between any of us -- she'd spent months making her feelings for us known, as had we -- is a blessing that I'll forever be grateful for.

[SirFozzie]

I'm so sorry Jon. May God welcome her with open arms.

If there's anything I can do, please let me know.

[JonInMiddleGA]

Originally Posted by SirFozzie

I'm so sorry Jon. May God welcome her with open arms.

If there's anything I can do, please let me know.

Thank you Fozz, continuing the many prayers I know have been sent up for us is about the only thing I can think of anyone can do at this point.

Peace and comfort are difficult to find for us right now, making sleep and sustained coherent thought scarce

[rjolley]

Very, very sorry to hear that, Jon. My condolences to you, Will, and your family and friends.

[GrantDawg]

So sorry for your loss, Jon.

Sent from my SM-G996U using Tapatalk

[Lathum]

Absolutely gutting. So sorry for your loss my friend. If you ever need to chat feel free to DM on Facebook. Our thoughts are with you and Will.

[Breeze]

so very sorry to hear this...praying for Will and you.

[flere-imsaho]

I am so sorry, Jon. I can't find words for how terrible this must be. You and your son have my utmost sympathy.

[sterlingice]

I'm so sorry, Jon.

Prayers for peace for you and Will.

SI

[Edward64]

Condolences to you and son.

[MizzouRah]

I have no words Jon, except you and your son and family are in my thoughts and prayers.

[AnalBumCover]

So sorry Jon and Will. You are in my prayers.

[Kodos]

I'm so sorry, Jon. Just gut-wrenching to read. My sincere condolences to you and Will. I will pray for you both and Mary-Ellen too. Words just seem inadequate.

[cuervo72]

So very sorry, Jon.

[JonInMiddleGA]

Originally Posted by Kodos

I'm so sorry, Jon. Just gut-wrenching to read. My sincere condolences to you and Will. I will pray for you both and Mary-Ellen too. Words just seem inadequate.

I appreciate it all.

I was a little torn -- but honestly not TOO torn -- about whether to do that level of detail. I've left out the worst bits of yesterday, the images will haunt us both for the rest of our lives to be honest, but ... I've never been good at brevity and it wasn't the first time I've used this thread for some personal therapy.

Also, FOFC has ridden with us throughout, I felt like some obvious questions deserved answering before they could even be asked.

I'll say this repeatedly in the thread I'm sure, but I'm grateful for the love here, I truly am.

[Ksyrup]

Sorry for your loss, Jon. I can't imagine how you feel. Having followed along, the thing I'm struck with is the roller coaster of highs/lows and how emotionally draining that must have been for you, let alone, of course, what your wife was going through. Stay strong for your son.

[Thomkal]

{{{hugs Jon}}}


I'm so sorry for your loss, I can only imagine how devastating this past week must have been, even without every last detail. I'm so relieved you and your son were there at the end to say goodbye and let her know how much you loved her. She put up the strongest fight I have ever seen from someone battling cancer, and that should be an inspiriation to hold on in the days and weeks ahead.



You, your family and friends are all in my thoughts

[JPhillips]

God bless and take care to both of you. I don't know how to express how sorry am I for you both.

[miami_fan]

I am so sorry for your loss Jon.

I wish I had more eloquent words to express the sadness I feel for you and your son right now. I know you are going to do everything in your power to be strong and support Will and the rest of the family through this difficult time. Please make sure you allow him and others to be strong for you and provide you with the same support.

[stevew]

That’s terrible Jon. I’m so sorry for your loss.

[BYU 14]

Absolutely heartbreaking to read through that and I am so sorry my friend. I know there are no words to ease this pain, but know you and Will are in our thoughts, and as you process this difficult time, know that you will remain there. Love and hugs my friend.

[bhlloy]

So sorry for your loss Jon

[thesloppy]

So sorry Jon.

[Swaggs]

Heartbroken to hear this and for how hard this must be for Will and you. Mary Ellen sounds like she was a tremendously tough fighter. I hate this for you all. Thankful that you have a safe space here to get some support. Hang in there.

[Honolulu_Blue]

I am very sorry to hear this, Jon, and extremely sorry for your loss. A very similar event took my brother down during his 18 month battle with cancer. It was awful. This kind of thing is never easy, but take it from someone who has lost a beloved nephew, a brother and a spouse, you’ll get through this. The hole in your life, your heart and soul will always remain, but you’ll get by and things will get better. Both you and your son are lucky to have one another.

[tarcone]

Jon, I am so sorry for your loss. I will keep you and your family in my prayers. Im happy she is in a better place and pain free, Im sad that you have lost her for the time being.

[MacroGuru]

I sent you a personal message but I can say - I was drawn to the board tonight for some reason. I can only say this was it. We are a big dysfunctional family at FOFC and have been with each other for a long time. But we are all still family.

I am honestly in tears over this for you Jon.

[Silver Owl]

I am so sorry to hear this Jon, you and your family are in my thoughts and prayers.

[JonInMiddleGA]

Obviously I'm not expecting anyone to make the long trip, this is simply for informational purposes.

As it turned out, the funeral director knew her personally, and is responsible for the plaudits in the narrative.

That funeral director was one of last year's local record breaking crop of DAR recruits. Her two year tenure in charge of recruitment for the chapter -- overlapping with virtually all of her cancer journey -- earned her a national award that was due to be presented in D.C. later this year.

I cannot tell you how much easier working with someone who knew her personally made the funeral arrangement process, and I think this turned out better because of that relationship as well.

Obituary for Mary-Ellen (Swafford) Loveless | Lord & Stephens Funeral Homes

[PilotMan]

Jon I'm just getting caught up on the posts of this week today. I'm terribly sorry for your loss. The grief must feel nearly overwhelming and I'm sure that the fight and struggle of the last 2 years took it's toll on you, and reading back on everything that transpired, and level of detail that you can recite means that it's clearly emblazoned on your mind. I wish you to find peace and peace for your son as well. I don't have any better words or thoughts, and they simply cannot convey the feelings well enough, but you and your son are in my thoughts, and I hope that you can wake up and breathe again, and that you both will continue to revel in the joyous memories of her life, that both of you shared.

[MIJB#19]

My condolences, JIMGA.

It's cheap to piggy bag on the words of others, but PilotMan's are spot on.

[Kodos]

From the obituary, it sounds like your wife was a wonderful and incredible person. Again, I'm so sorry for your loss, and for all of your family's suffering.

[JonInMiddleGA]

Originally Posted by Kodos

From the obituary, it sounds like your wife was a wonderful and incredible person. Again, I'm so sorry for your loss, and for all of your family's suffering.

She was something else.

The phrase I've seen/heard most often, I think, across now 200-300 posts or messages, is "force of nature". That's a fair attempt at describing her.

The minister mentioned her "ability to draw a bead on something and her eye never waver" was pretty good too. There was all that sort of drive and will and determination, balanced with an ability to simply connect with people in a matter of moments -- to wit, there are at least a half dozen girls she met at Ole Miss during Will's orientation that we've heard from based entirely on their relationship with her -- ... and juuuust enough Lucy Ricardo to inevitably make things interesting and memorable.

A unique combination of traits in my experience, truly one of a kind.

[claphamsa]