My friend is getting admitted today for Bone Marrow transplant, any advice for me.

You’re a good man @L8RSK8R .

I’m in the neighborhood if you need to step away for a minute. Let me know. I’ll buy the tacos.

 

What rollercoaster ride this has been.
His lawyer the head Dr and I sat down Saturday afternoon and discussed end of life procedures.
Dr said he'll likely choke on his own fluids. His mucous membranes are deteriorating.

I lost it and called Joe's ex girlfriend. She said she'd be in San Diego next week....the wee thing showed up 2 hours later.
I woke Joe up and there's a very special guest here to see ya...he said"who...is it the Pope" he couldn't believe she was there to visit him. They haven't seen each other in over 20 years.

His whole demeanor changed immediately, he was lucid and joking like he used to do.
He hadn't been this alert in month.

I'm not religious but something occurred when she showed up.

My brother was with him today and he ate cheese cake, first solid food he's eaten in 3 weeks. His vision has come back and nurse told my brother, they may move him outta ICU, back to the 6th floor.

Dr had told us Sat evening ,it could be Monday...today... that they'd administer pain meds so he'd die in no pain.

Crazy train going on.
I called his old neighbors a today with a heads up, they were there within an
hour.

He's loved by many folks, and I thank you for listening and reaching out and giving me support.

 

Sorry to read about your friend. I spent last year with Mom and while I have no regrets I would be lying to say it was not tough. She also perked up while in hospice when my brother came down from 600 miles away. The next day she fell off HARD. But it was awesome she had a last good day and he did not have his last memory be a bad one. I have nothing to add other than it sounds like he was one awesome dude to inspire so many people.

 

It is a roller coaster. I'm glad your buddy had a better day today.
Keeping both of you in my thoughts.

 

I'm at a loss for words while reading your last post. All of us can only hope we have a loved one or a friend to be there with us in the end, like you're doing. You're truly an angel to him for all that you've done. I'm not religious in the slightest, but I'll go ahead and say it anyway; Godspeed to your friend...

 

I both love and hate to see 'new posts' in this thread. You're a good friend.

 

Maybe I'm naive and uneducated about this shizz, but it certainly seems since Saturday his demeanor has changed for the better. He's on no pain meds at this point.
He's communicating as he hasn't done on a month.
He's eating solid foods and drinking his favorite soda (peligrino blood orange)
His blood work is good.

This is the first close friend that's in this situation or first I've been involved with...
Is he getting better to get worse?

 

Sounds like the woman gave him purpose

You would be amazed how many old spouses die within a year of each other.

 

His blood work is what will tell you, consistent is good even if it's not an amazing number is good.
High peaks tend to scare me more because they normally crash and that's worse.

 

^^^ Purpose^^^

I have witnessed the same firsthand...

Purpose can take many different forms...the drive and mental stamina needed to get over what may seem to be huge obstacles when starting a new business...
On a more personal level, the caring and sacrifices we make for those we love so they may have a better life...

On some level, whether it be spiritual, mental, or psychological, your friend felt cared for...we all blossom when we know we matter to others...

I wish your friend the best...

 

my only suggestion to you at this time is ignore that question for now. Enjoy your friend while he’s active, lucid, upbeat, and vibrant.

You can always ask “what if” at a later point. Don’t get distracted with that only to miss your friend being truly himself.

 

Healing sometimes seems to be at least as much mental as it is science/medicine. If he pulls through this, he won't be the first or the last one to stare death in the face and come back. Just take the win and make the most of it.

If that story ends well, that mofo better build a shrine to you and his ex-girlfriend right in the middle of his house for everyone to see.

 

I posted up above quite a ways about my perception of the far tougher and complicated emotional course care givers have versus cancer sufferers. It is a bit presumptuous of me to offer advice to you in this trying time but I’ll share a story. My oncologist was an amazing woman, fully, personally and emotionally engaged with every one of her patients, without any apparent distance or reserve, and in spite of that she always retained her ability to see and treat at a very high level. So much so that I noticed it and asked her how she did it, and her answer was, “prayer, meditation, yoga, exercise, hobbies, and every thing else that’s available.” So, in a sense what I see you asking is, how do you care for the caregiver? What should I be thinking? Should I go up and down with the day’s status? All I can offer is, don’t forget how important you are to your friend and the care you can offer, and spend some time on how to sustain that by taking care of yourself, find resources in the community, and use the resources the hospital offer that are relevant to you. I’m guessing the hospital may have some program to help caregivers, or there’s one in the community. FWIW.

 

Great news @L8RSK8R glad to hear and hope it continues

 

Update?

 

Yeah. How are you guys both doing?

 

Joe was moved to a rehab facility 2 miles from his house. He's been there 3 weeks.
Just got a call from him now, he's getting home tomorrow
Haven't seen him in almost a month due to lockdown at hospital and rehab.
He sounds great, and is fuxkin delighted to be getting home.

He'll have physio and occupational nurses visiting regularly.

Sucks he gets out to this Covid shite.

And fuck Stephen Johnsons Syndrome.

 

How’s Joe? Have you been able to see him?

 

Yeah....how had everything been going with him and this current world.crisis. hopefully well.

 

Thanks for thinking 'bout Joe...Joe
Unfortunately he's had a few setbacks.
He was 177lbs when he came home again, currently 201lbs.

We got back from the clinic 3 weeks ago and he has a hard/slow time walking up 16/18 steps from the street to his front door. We'd typically sit down on the patio by his front door and he'd rest up a bit after the stair climb.

I had to run to the bathroom and told him to hang tight for a few minutes.
While I'm in the bathroom, I hear a crash noise from the patio.
He'd attempted to enter the apartment which there are two more steps to access and fell hard on his ass/back.
He'd had lower back surgery 20/25 years ago and bruised the fook outta his tail bone. This really set him back and he could hardly walk or sleep due to the pain.
We were up 30 hours straight, slept a few hours and right back to the scheduled program.

Poor guy goes 3 times a week to the cancer center for blood work then 4 hours of Magnesium infusion while there. Once home, I'd have to give him another 4 hour infusion...7 days a week with a Curlin pump.
His Glucose levels are spiking all over the place. 357, 220, 315, 280 etc.
Last Friday morning Glucose was 193, at 4pm it was stabilized at 193. That'd never happened before. I did catch him several early mornings raiding the fridge and stuffing his face.

Again, same Friday around 4:45pm he's asleep and I'm heading out on the bike to pickup a prescription for him. I get back 45 minutes later and he's on the floor, fallen outta floor reaching for his water cup next to the bed.
PJ's soaked in pee, he can move left and right but there's no way I can or was willing to attempt to move him.
I called 911 (5:45pm) and EMT eventually asked him "where are we going" Joe said "Oh, just back into my bed" EMT couldn't force him to go. I said "fuck you Joe, you've gotta go to the ER"
Now I'm pissed, EMT's left so I cracked a Guinness and hung out on the patio for 20-30 minutes.
Walked back to his room and he said "you were right Ciaran, I should've gone with those guys to the ER, would you call them back again"

Called 911 again (6:30pm) and they took him to Thornton Hospital ER in La Jolla. I get a call from Joe at 9:38pm "they're sending me home in a LYFT car" and he hangs up.
I'm so very confused at this point. He obviously elected to discharge himself, which he'd done once before back when he first got home in March.
10pm and Joe arrives home.
I put him to bed and checked on him every time I needed a cold Guinness.
12:30am I'm on the patio and hear a massive smack. He'd got up to pee and looks like he pissed on the floor and slipped on the pee. Huge lump on back of head. I call 911 again and they take him to UCSD Hillcrest ER.
I wake up at 8am Saturday morning and check my phone. Joe left a message at 6:09am, "meet me downstairs, I'm on my way home"
I call the ER and that ain't happening. Apparently also fell outta the bed while in the ER.

He was transferred to Jacobs Medical where he initially had the BMT. They advised him & myself that he needs specialized care. Sent him to a 2 star (reviews) retirement home in La Mesa. It was apparently the only place with a private room available for him.
He had an appointment with BMT team yesterday, whomever was providing transportation, dropped him off at a cardiologist's office in La Mesa. Roughly 30 minutes from where he was supposed to be.
I got out there and picked him up, got him to his appointment 3 hours too late.

I get a call this afternoon from his case manager. Nursing home isn't certified to give him the daily 4 hour magnesium infusions (might be an insurance clause) I'm certainly not certified but had been doing it for the last 7 to 8 weeks. His BMT team is actively looking for a better suited rehab facility.

I did what I could, barely slept. I lost 33 lbs in 3 to 4 months.
Hopefully he gets the rehab facility setup and he can rehab from his falls.