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Posted 1/22/2013 3:10 PM (GMT 0)
As of January 22nd:

As far as my weight loss/muscle wasting issue:

So far, no one distinct answer.  It has not proven to be cut an dry.  Right now, my oncologist, the head of the Oncology Rehab program, the Oncology Dietician, and my PCP are on the same page, and working together to find the way to properly ascertain what is going on.  It may take a group effort.  I am prepared to do whatever they come up with.  I am not in a dangerous situation, yet.  But in a few more months, could be, if we can't reverse or at least slow down the process.  Had I been a real lean person to begin with, would be more of an issue.

As far as my bladder and possible bladder cancer issue:

Have an appointment locked in with the bladder/prostate cancer in Charleston on February 8th.  Going to turn that trip into a visit with my daughter, as there is no way I can drive that far and come home the same day.  Would be a 450 mile round trip for me.  Feel ultimately that it will end up being the case for removing my problematic bladder via open surgery - which just the thought makes me ill.

As far as my book goes:

I am not one for formal written outlines, I do that in my head, but got the entire book outlined now.  I am estimating it will be around 60k to 70k words.  The title in mind as of now, "Some Wild Ride: one man's prostate cancer journey and advice".  Hope to start the actual writing part within the week.  Based on my normal writing style and depending on my mood, should only take me about 3 to 4 months to complete

That's about all I can report for now

david

Post Edited (Purgatory) : 1/22/2013 10:06:52 AM (GMT-7)

Posted 1/22/2013 3:54 PM (GMT 0)
Hi David, all 3 seem like great plans. Especially like the thought of a "group effort" re your weight loss. The book title sounds good, would make me interested to read it just by the title (however I may be biased as I´d read anything on PC) :) We submitted my dad´s stories to the publisher in December, and had an artist do design of the cover, turned out great. Keep us posted.
Posted 1/22/2013 3:54 PM (GMT 0)
David -

If emotional support could be weighed on a scale, you know you've got several tons of it right here on this list.

You hang in there, brother.
Posted 1/22/2013 5:24 PM (GMT 0)
David,
Sounds like a great plan to me.

Looking forward to reading your book.

All the best,
Andrew
Posted 1/22/2013 6:18 PM (GMT 0)
Interested in seeing what the docs might suggest for you Dave.  I just got interested in alot of bloodwork markers since I got kind of ill and into hospital, I am now trying to learn a whole other set of things other than PCa stuff. It is pretty interesting to see what indicators of these items and significance of having high or low readings, things like:

WBC (white blood cell counts), Segmented cells, Neutrophils Absolute, Juveniles (all were too high on mine 12-28-2012)  and Lymphocyte count was low on mine then too.  Did see that cortesoids (steriod stuff like prednisone, et al) can influence WBC count and such, also infections and other things including other cancers etc.)

They could not pin point what caused my issues, I believe it is a combo effect and maybe along with some type of infection. Have you followed your blood parameters and tried to see what they show as possibilities???? This stuff gets super complex to pin point, as far as I can see.  Might be interesting to know your alkaline phosphatase, PAP and UnTx, along with many blood markers.  My alk. phosph.  was slightly high last month, first time ever too.

If you have your blood parameters showing low or high, perhaps mention what they found????  Quoting Butch Cassidy and Sundance Kid......'who are those guys'......(might be appropriate for all this medical stuff).

Post Edited (zufus) : 1/22/2013 11:23:13 AM (GMT-7)

Posted 1/22/2013 6:32 PM (GMT 0)
Good luck on Feb 8th!
Posted 1/22/2013 11:30 PM (GMT 0)
thanks

really wondering what kind of dx will be found, or what tests will be ran - with an expert of such caliber. I am going into it open minded. my oncologist had no further faith in either my urologists or any of the other ones in my area. said I was dealing with some unique, but difficult circumstances.

don't look forward to the long trip part, as that doesn't usually bode well with me in general.

david
Posted 1/22/2013 11:39 PM (GMT 0)
Hang in there, David, as you have for so long. I'm praying for you, bud. You've been walking point for the rest of us, and we're all pulling for you!
Posted 1/22/2013 11:57 PM (GMT 0)
thanks, reachout, all for one and one for all
Posted 1/23/2013 12:20 AM (GMT 0)
I'm relatively new here, although I did lurk for over a year, I don't know every ones journey.
My prayers are with you, stay strong, and know that there are a lot of people praying for you.
Posted 1/23/2013 2:35 AM (GMT 0)
thanks james
Posted 1/23/2013 3:26 AM (GMT 0)
Purg :

The book sounds like it should be a good one. All the best in your effort and completion.
Posted 1/23/2013 3:27 AM (GMT 0)
thank you jav. for me, the hardest part is committing to writing a work of non-fiction, after a life of only writing fiction.

david
Posted 1/23/2013 3:42 AM (GMT 0)
David, I'm glad your doctors are working together to find the cause for your weight loss. Hopefully they can come up wit the answer to reverse it. Good luck.
Posted 1/23/2013 4:01 AM (GMT 0)
thank you, ed, my friend
Posted 1/23/2013 4:36 AM (GMT 0)
Sounds like a good set of plans there David. A while ago, I believe you said there the possibility of getting a PET scan. Is that still in the cards? Also, will the bladder surgeon have all your studies or everything he needs by the time you get there?
Posted 1/23/2013 2:18 PM (GMT 0)
He is suppose to have all my medical records & opinions from all of my other doctors before I ever make the visit. Plus, I will be sending him an e-mail with a good outline and chronology of all that has happened to me. It's gotten to be such a long and complicated story, in order to be able to tell someone all that has happened, etc.

david
Posted 1/23/2013 7:16 PM (GMT 0)
David, I am so glad things are strating to come together a bit for you.  Please keep us updated on your book's progress.  I have written a caregiver's handbook (that's not exactly the right word, but haven't come up with a better one yet) and am interested in the publishing process.  I was to meet with a copyright lawyer on the day hubby wound up being diagnosed with PCa and had to cancel the appointment.  With his surgery, my surgery, and now MIL's health issues popping up again, who knows when I'll be able to pick up that process again.  Might email you when things settle down to find out more about getting an agent, etc. 

Prayers continue for you, your wife and mother's continued improvment. 

Posted 1/23/2013 7:29 PM (GMT 0)
David, really glad you have the process and appointments fixed. Hoping the trip is not too excruciating, but I feel it will be worth it. The book sounds like a good idea and with your exceptional descriptive ability, it should be a really interesting read.
Posted 1/23/2013 8:54 PM (GMT 0)
thanks worried and passages
-----------------------

bad session at PT today. twice, my left hip went out completely, and had it not been for my cane and the therapist walking with me, would have hit the deck. also kept feeling dizzy at odd times past week or so, not normal for me.

finally got home from a busy day of errand running and meetings, and both hips and entire back is on fire. all I can do is take more meds and go lay down, and hope for the best.

physically, not a very good day at all.

david
Posted 1/23/2013 9:14 PM (GMT 0)
So sorry that you've had a rough day.  Hopefully things will ease up tonight and you'll feel better tomorrow.  That dizziness is worrying. 
Posted 1/23/2013 11:31 PM (GMT 0)
thanks.

2 1/2 hours of laying down and (2) 10/500 Loratabs later, no relief from the pain. when I did get up, first thing that happened, my left hip went dead on me and almost went down again. fortunately my wife was with me at the time.

time to put in another urgent message to my doctor

that and a lack of good sleep, I estimate over the past 3 nights, have only had a total of 8-9 hours of very broken sleep. being that tired doesn't help my cause either, but I think some of the sleep issues is related to pain I am feeling during the night hours
Posted 1/23/2013 11:56 PM (GMT 0)
It also may be time to go to the ER either now or certainly first thing in the morning if no improvement.

You MIGHT have bladder cancer but you DEFINITELY have an aggressive PC.

You have been having all sorts of pain. I realize it has been attributed to the radiation damage, but there is still great concern that with your fast-rising ignored PSA the PC is doing a number on your bones.

Bottom Line -- if it is possible that you have a broken hip, get it checked.

I know one of our members (wish I could remember who) actually broke a bone just from getting up from a seated position. Incidentally, that break was due to PC but he is on some treatments. His break healed and he is doing very well.

I hate to sound like such an alarmist, but your description seems scary to me. Hopefully it is just a muscle tweak.

Mel

Posted 1/24/2013 12:40 AM (GMT 0)
Compiler may be right.  I didn't even thinnk about a possible hip fracture.  I should have.  My m-i-l broke her hip last year.  Have your wife look at you legs while you are lying on your back.  If one is shorter than the other, or if one foot turns drastically inward or outward, call 911- better they take you than you go in your car.  If it is broken  you DO NOT want to be walking AT ALL.  The dizziness is also a symptom.  My mother in law's break caused her to fall (not the fall causing a break).  It was due to uneven pulling on the joint by the muscles due to damage from strokes.  Your could be from PCa or from muscle loss, etc.  CALL you doc NOW at a minimum.  Don't mess around.  You have been under ALOT of physical stress the past few months.  Don't make things worse by waiting. 

Please keep us updated.

Prayers going up!!!  

Posted 1/24/2013 1:49 AM (GMT 0)
sorry, I don't see anything that compiler writes.

why would you think my hip was broken? I haven't falling down or got injured, I would think I would
know if that has happened. Not following the logic here.
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