D_M's Health Update


#21

Not good. The surgery failed Wednesday morning and I’ve been here in the hospital every since. The fukking tumor has the esophagus just too badly blocked for a gastric tube and the swelling is only going to get worse. I’m less than 2 weeks into treatment. So their going to try TPN feeding now directly through the pick line in my arm. It’s basically the same as prenatal feeding. It isn’t really food as you’d get with the gastric tube, just vitamins, minerals and some kind of caloric base. It’s hopefully enough to get me through the treatments to the point where they can rescend the mass and keep going I guess.

I was going to say something else but the morphine and Fenatyl has me too foggy again… I’m just goingto lay back down and look out the hospital room window for awhile. It’s pouring out there.


#22

Ah that’s the shits!

How long until know if the chemo is working?


#23

No idea, really. I guess they’ll do a checkpoint near the end of treatments and see where things stand. I guess I should really be listening to the guy with the knife as he has the final say. I kind of like him anyway. He’s not one to bullshit his patients. So I guess it would come down to 3 options in early March.

  1. Everything worked great and it’s on to surgery.

  2. Not the idea results, extend/vary treatments and revisit surgery in a bit.

  3. Not working at all. In this case I would exercise my legal rights to pursue 2nd and 3rd opinions/options within the Socal cancer provider community… which includes UCLA and City of Hope… two of the best in the world in terms of extending the life of people like me.

Not even going to consider putting my full faith in any alternative treatment strategies until and unless I’m given up on and offered a hospice room. Way too early for that IMO.

Anyway, I had a moment of clarity and a break from the normal stream of specialists involved in simple hospital stays these days, that I thought I’d give a more uplifting update. I was quite astounded when the clouds broke this morning and revealed this view from my hospital bed. That’s good old Mt Baldy with a fresh sprinkling of pure snow. I want to get up there to the summit again soon.


#24

That is an amazing view!


#25

Very nice view.

Prayers that they find just the right protocol for you.

Keep the updates, and pics, coming whenever you can.


#26

Looks like they’re keeping me here for yet another day or two. It’s not that bad other than shear boredom. The rooms are private and pretty new. Kind of like a Holiday Inn hospitality suite. I’m through one full TPN feeding cycle and feeling pretty decent…almost like I ate something. And the drugs here are plentiful and strong. My favorite is the 20mg shot of Hydromorphone. It’s the closest thing I can imagine to being an actual heroin junkie.

An ambulance will be coming at 4:30pm to take me to my radiation treatment, just like yesterday. It’s weird, they strap me on a gurney, wheel me a waiting ambulance and drive me 50 yards across the parking lot to another wing. They even hit the lights and siren to amuse me.

Anyway, here’s a short update to my condition.
**** CAUTION ****
I look real bad… like I’ve aged 40 years and am dying. I don’t normally look anything like this.


#27

Shit. I would be tired of looking at it, too. Thanks the gods that you’re feeling better!


#28

Keep a stiff upper lip old boy!


#29

Thank you for posting the video. As terrible as you look, it’s nice to see how you’re doing. You have a great attitude which will really take you far on this journey. Hang in there.


#30

Then they bill your insurance for an “ambulance trip”

Home Healthcare Pharmacy? Can I come visit?

You seem like you have your wits about you, aren’t in pain and you’re standing and shit at least…


#31

#32

Prayers for you.
My high school friend had esophagus cancer, he went to Cancer centers of America. His insurance didn’t pay for it, gofundme’s, but he made it. His biggest problem was eating/drinking, too. He lost 60 lbs.

Prayers.


#33

Thanks, Epiphany. Yes, CCA is a great place for stage 3 and 4 treatment if you can swing it. As mentioned, most insurance won’t pay for their care and then you have the travel and lodging cost if you don’t live in one of the 4 cities they operate in. I have a friend who was treated at CCA Atlanta for stomach cancer and received exactly the same treatment protocol he would get here at Kaiser (chemo, radiation, surgery, social, spiritual), but probably not anywhere else down South. He did well and has been remissed for about 5 years now.


#34

Good luck. Cancer sucks, I’ve had a lot of it in my family.


#35

Got discharged from hospital last night, spent 4 hours with a home healthcare worker and just finished my first 17 hour TPN feeding. Will start the 2nd 17 hour feeding about 6pm PST. I’ve got a another home healthcare working on the way due to some equipment issues. I get 100 visits per year, no charge… so no biggie. I actually like the home healthcare thing, it keeps me from making a bunch of trips to the hospital for every little thing. They are going to come out twice a week to clean & redress my picc line as well as do my lab work. The RN’s are super nice… but are mostly used to dealing with hospice cases rather than palliative cases… so the endless hugs. kisses and prayers are kind of eerie.

One thing I noticed during the late stages of my hospital stay was that they were using the same CA security suite to protect their systems that I work on at work. I was able to do a quick hack on the PC in my room and see the “actual” costs of my care since diagnosis…LOL. My actual costs are over $600,000 now… yet my OOP to this point has been $350… and I have a HSA to cover that 10 times over. Kaiser Permanente has really taken care of me… hasn’t spared a dime… and the care I’ve received has been phenomenal. I honestly don’t believe City of Hope or UCLA would have done anything more or better. It just would have cost me a lot more OOP due to have to have been using a PPO.

Here’s my new “best friend”… the TPN rig. Weighs about 40 lbs.


#36

Keep up the hard work!


#37

Damn kids these days with their baggy ass jeans!


#38

Glad yer home

Wot is OOP


#39

Out Of Pocket, yer co-pays and sich.


#40

Out of pocket