just brief post-surgery report 10/3

Tim, that was a great quote! I really, really liked that, and had never heard of it before.

"What can't be cured, must be endured"

That sums up a lot of what I am, and have been dealing with the past 6 plus years. Almost nothing that has been done for me in the name of treatment or "cure" has worked, or worked correctly, or involved complications that most don't have to ever deal with.

Why me? I never ask myself that question, life is what it is, and the common saying is that one deals with the cards dealt to them.

Am I being punished? Early in my troubled days, I did search my soul and ask that question more than once or twice. But I really don't believe in that line of thinking per say. Even in the good book, it talks about how it rains on the just and unjust alike, and that's good enough for me

Were it not for my personal faith, I might gravitate to feeling utterly hopeless at times, but I know that in the big picture, everything in my life is under control, and is being taken care of. In the flesh, however, there are moments that bother me, but as your quote says, I "endure".

I am slowly healing on the dental front. It's only been 9 days since the surgery. I was told it may take 4-5 months (not weeks) to heal to the level that the surgeon wants, before I can be fitted for the dentures.

And I knew that there would be at least 10 post-surgery hyperbaric treatments. Half-way through them, even though it truly was a week from hell. I will endure those last 5, have no choice, and at this point, I will feel like a new man when #10 is over with hopefully next Friday afternoon. Then I should never need to go through that again.

It is weird thinking, that I will never have to deal with tooth pain again, ever. No more tooth aches, no more cavities, no more teeth breaking apart. Kind of like the sounds of that part, a few months from now.

Eating is still very difficult at the moment, mostly liquid base food only. Gums too sore to grab a hold of anything. So whatever I eat, has to go straight from my sore lips to the roof of my mouth and down my throat. Once the gums heal some more and start to harden up, I am sure that I can expand my choices.

Since I still have zero appetite at a given moment, the loss of eating is not painful to me, other than I know my weight is really getting down there. So I still have to make an effort to eat at all.

Thanks for your continued great support, and a great quote to remember.

---

Age: 61, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries

good luck in the future david.....if anyone deserves a little luck...its you

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Age:53 Diagnosed: April 2011, Age 50
Original PSA Level 92......Gleason: 9
Treatment: IMRT..2 Aug, 2011, 45 days
Lupron...1 year (started 13 July)
PSA: May 2013...381, started Zytiga
Confirmed Bones Mets widespread.
Zytiga stopped working...now on Xtandi, Lupron, Xgeva and
just started another 6 rounds of Xofigo (Radium 223) as part of a study.
Current PSA continues to rise now at 23.7

Prayers that you heal up soon, so you can try home made mashed potato's without milk....I hope the extra pain meds have you feeling better tomorrow!
Continued Prayers...

David:

I'm sorry to hear that you had more pain issues today. I hope that it lessens and tomorrow is a less painful for you. I also am pleased to hear that your daughter will arrive tomorrow and will be staying with you while your wife is out of town.

I truly hope that you'll be able to eat something a bit more substance in it. Like a bunch of protein would be good for your healing.

I'm not sure the VA will be open on Monday David, it's a Federal Holiday and all military facilities are closed.

I too use my Medicare and Tricare fir Life. Since I'm under the age of 65 though I'm dual qualified I use my Tricare Prime to. Of course, my care at NIH is totally free as are all patients that are seen there. NIH also covers your expenses to the NIH campus. You just need to contact them and let them know that you need assistance getting there.

I just wanted you to know that I'm praying for you and I really care about your situation. Very worried that you've not been getting the correct medical care in my humble opinion. Have you been tested for food allergies? If not, maybe being tested for the allergies, I know i have a friend who was allergic to almost every food she ate. They had her stop all foods except for a few items. Then every other week they added another food into her diet if she didn't have a reaction to it, them it stayed in her diet.

It's just a thought I was going to mention it and I totally forgot. Well It's almost 2:45 am and I need to be up by 9::30 am to help hubby with a few him with a few things tomorrow. I'm praying that you're fast asleep and comfortable w/o any pain awakening you. Will check back on you later today. Hope your day goes well, and IF you go to Mass may it bring comfort to you and healing.

Hugs,
Barbara

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DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Tuesday Morning 1230 AM

Thanks, Aimzee, for your kind words. Yes, my wife not only gets to go to the wedding of course, but the rest of the family (with her) is taking a mini-San Francisco/Napa Valley vacation out of the deal. She has never been to the West Coast before, or ever seen the Pacific Ocean. She's dying to see the Redwood trees as well. This is where we had hoped to honeymooned at in 1974, and never could. It's a shame I am not well enough to make this trip, but at least she gets to go. Say hey to Ron for me.

Barb, yeah, the VA was close on Monday, will be calling in the morning to see what can be arranged.
=================

Yesterday was treatment 26 out of 30, so 4 to go. There was still another 45 minute delay today, which greatly annoyed me, but made it through it. Had to brain wash my own brain to get through it, but at least there was no extra pain involved today, just the normal amount. Really feel like saying no to the last 4 treatments, but will probably just tough it out one day at the time and get through this. Whether its helping or not, I may never know, I can't tell by "feeling" and I don't see any physical evidence that anything has changed, so trusting the skill of the surgeon on this one.

---

Age: 61, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries

Hope you feel better, Chart. Already got hold of the VA this morning, waiting for their return call, least got it in the system. Then off for treatment #2 of the week, then 3 to go, starting to feel like I can make it. Yesterday, I was honestly ready to cancel the remaining 4 treatments, but I am fighting the urge to quit and to tough it out to the end. It would be so easy to walk away at this point.

David

---

Age: 61, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries

Thanks. Todays, 2 of the last 5, wasn't too bad. They were waiting on me for once, no delays. Only the last 20 minutes or so got to my spine and hips. Starting to see the end of the tunnel on this deal.

Tried to nap, but was too wound up to relax enough. Hoping to make it up.

Thursday will be the tough day for me. Have to get up at 5 AM (unthinkable in my world) to take my wife to the airport, as she will be leaving for our son's wedding. Then have to be back at hospital around noonish for a treatment, plus whatever else comes along.

Hopefully, once all the treatments are done, my daily life will get back to a more peaceful "normal". These treatments have been going on since September 2nd, starting to seem like forever, and due to the time of day, it really messes up other things I want to do during the day.

Hope you feel better, and to Barb as well

David

---

Age: 61, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries

thanks, diane

2 treatments left, think I am going to make it after all. todays was on time, that was good, but one hour into it, had worse ever back and tail bone aches, had to tough it out the last hour. be so glad when this entire ordeal is over with. can't believe I have been through this 28 time, or about 70 hours so far in the chamber, seems forever.

tomorrow tough day for me, got to leave house at 430 this morning coming up, to take wife to airport, then go to legal meeting ,then to treatment. probably will come home and crash all late afternoon after all of that. then a very busy weekend planned with my daughter, if I have the energy at that point.

still don't have a straight answer from the va, waiting for call backs that still haven't happened since Tuesday morning.

---

Age: 61, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries

David:

So glad that you're almost done with your treatments. I'm also relieved to hear that you feel you can get thru them all. I sure understand that feeling of wanting to just not do it. I'm struggling with some of that right now.

Hate to hear that you have to be up so early in the morning. I hope that you're able to sleep tonight, or it's going to be hard to get up in the morning. Is there any possible way you could get out of the legal meeting in the morning? I know they are important but your rest is too.

I hope that your wife enjoys herself out on the West Coast. We used to be stationed at Travis AFB, that's near Napa Valley. I loved the weather in that area, of course, hubby hates CA with a passion. So, I know we'll never settle there for a retirement spot.

I hope that you do have energy and can enjoy your time with your daughter. If you're not up to feeling well and such, just let her pamper you a bit. I'm sure she'll love taking care of her Dad. I know when I'd go home to visit my Dad I loved to pamper him and wait on him.

I pray that your last two treatments go smoothly and w/o to much pain involved. I really hope that you start to feel so much better really soon. Any luck on getting any food in your poor body yet? I hope you can find something that's worth eating.

Chart sorry to hear that you RA is giving you such a hard time. I hope you start to feel better really soon. Diane I hope you're doing well too, I know that you have a hard time with pain, we all understand it that's for sure. I just wished none of us would have to deal with this. Take care ladies and thanks for the well wishes on David's thread.

David, thanks of course for your well wishes. Did you hear anything at all from the VA yet. I know they can seem like they are dragging their feet on things. Will say a prayer things get better really soon.

Take care and gentle hugs to you my Friend.

Barbara

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DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

a cab or shuttle would cost us 190 bucks from here (30 miles) to the airport. I cant' do that, plus want to see my wife off, we will be a part one full week, which is a lot for us. its worth losing some sleep over.

that's what husbands of over 40 years do.
----------------

went to bed at 1230, early for me, just got up at 415, I feel fine. going to drop her off, then should be home by 7 if not before. may get a chance to meet before meeting

---

Age: 61, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries