"Sue Saddened Wife" Continuation Thread 3

Deanna;
The onclogist we had also told us that Dave didn't have long back in May. We had a lot of indicators as in June Psa was 2,389 and by Augv12 it was 6,045 Aug 24 9,153.8 . They held no hope of finding something for Dave from the time the ct scan in May said there was mets to liver. Do you know were the mets are in Rich? Yes I know what you mean about a oncologist and I don't feel we had the best either and when they let us have a medical oncologist it really didn't help because he never wanted to look up new treatments and I was always having to find out things to try .If we had been smart we would have gone to the states to MD Anderson in Texas because they seem more aggressive in their protocols to safe a mans life. Another Dr I hear great things about is Snuffy Meyers out of Virginia. So don't beat yourself up over the path you have taken with Rich because even when you try to get help there just isn't enough they really offer. We got so sick of the words "Standard of Care". What exactly is that? To me it means they will never go above or beyond what is charted protocols and for most of it they have no idea what to use for treatments any ways.
I am so sorry that you are not getting enough rest . I still don't sleep well and no I never get to deep sleep either .Dave slept I the other bedroom because he just couldn't get comfortable in bed and was hot flashing to the extreme. He was moaning out in his sleep constantly and it used to scare the heck out of me. I was so used to being up every hour on the hour for the last month before he passed away I was still doing it weeks after. I was up lots of mornings at 4 and now make it to 5. Try to grab a power hour around supper time if you can I found that was when I was able to feel like I actually slept.
Right now spend this time with Rich and savor all your time because Dave and I had no idea that the 29th of Aug would be his last . The signs are there but the only person who knows when life on earth is over is God. I can't have any regrets over what I did to care for Dave because I did everything possible. They had wanted to put Dave in hospital on the Monday but I said no just a gut feeling that if he went he wouldn't come home.
I think its so important that there is a wake up call about PC because there just isn't any education given and I am going to relay this last GP Dr visit Dave had on the Thurs night before he passed away . Home care said his general doctor wanted to see him it wasn't a request I had put in. He shows up at our house at quarter to 9 at night ? The first thing out of his mouth is refresh my memory what kind of cancer does your husband have??? Does he still have his prostate in ?? He examined Dave for 2 miniuets made note of the mottled color on his legs , asked me how long he had that listened to his chest. Wanted to see the meds Dave was on pulled every single one of them.By this time I was very peed off. Dave had just been in his office a few weeks before and this man had been his dr for a year . All copies of everything went to his office , bloodwork right up to every ct and bone scan and yet he walked in this house and didn't even know his patient. As he was in my kitchen I don't know what made me ask but I said what is your take on PSA screening. To which he said its just a silly waste of time it only puts men in diapers and makes them impident? So I reminded him I would have taken that for Dave to have him here for 20yrs longer .The man you just saw is dying because no one wanted to screen him for PC .The last 2 years has been a living hell because stage 4 cancer is a death sentence and his cancer could have been caught and cured had screening been done when I asked for it. What gives you people in medicine the right to deny a man a simple blood test when you know someone 3 out of 100 men are going to die like this. He told me at 65 he probably has PC to which I said you better hope you have the kind that you can die with and not of because you wouldn't wish Daves last 2 years for yourself.
I have determined that the medical feild and myself are a no go. I have absolutely no faith in any of the Drs in our area and my daughter is going to get me in at her family drs a hour away.
There is always going to be another family facing this horrible disease that people dont want to talk about or give education on. There is just no "Good Cancer" and the people who tell us this just have no idea of the pain that comment causes us . 💙

Sue, thanks for responding. Your descriptions are touching. You asked where my husbands mets are. At time of diagnosis April 1, 2014, he had bone mets of spine, ribs, femurs, hips and skull. He now has mets in his lungs, liver, lymphs, and brain (dura mater). He has had radiation on a fist sized tumor that got into the spinal cord in early August, radiation for the brain mets in late Aug. I have to ask ... when did you see the mottling on your husband? This is really freaking me out. I have noticed it for a little over a week, and it is getting worse. We do have a oncology appointment in the morning, but because the doctor picks up on the fact my husband really doesn't want to know anything, I don't get much information that I WANT. Again, my heart goes out to you.

Moonlit, I am so happy your husband is GOING more normal again. I am sure he will love you forever and a day, but loving you with normal poop is a big deal! I hope it all continues to go well.

No one fights alone! Deanna

Post Edited (deannakay) : 9/25/2015 11:21:46 AM (GMT-6)

Poop report update: Diarrhea returned last night. So we have, for reasons unknown, six months of daily diarrhea and very little formation, and then, again for reasons unknown, one day of normal shape etc. and accompanying bliss, following a day of nothing. So two days of relatively normal right after he starts Cipro. He is still on Cipro. I give up (almost...)

Yes, very frustrating. Just ONE piece of good news and then dashed. He said he felt better than if he'd won the lottery when the diarrhea seemed to have halted. :(

Hi Sue (HUG). I cannot believe an entire month has gone by. I know exactly how you must feel as my friend whose husband passed from a heart attack one day said a very poignant thing to me. She said she was so lonely and shocked and sad and yet she was still expecting him to walk through the door to make it all right. That hit me so hard. He has been gone over two years now and those words still echo through my head.

Prostate Cancer Canada has reviewed my article as I requested them to. They asked me to change "4,000 Canadian men die from prostate cancer every year" to "4,100 men will die from prostate cancer in 2015." I find it incredible that one in eight men will be diagnosed with PCa in his lifetime, and one in nine women will be diagnosed with breast cancer. Anyhow, they were very pleased with the article as it pointed out in the first paragraph that there is a persistent and very dangerous myth that "men die WITH prostate cancer and not FROM it." I am going to email you the article but it cannot be disseminated until it is printed in a couple of weeks. There are also guidelines for screening/PSA levels and, if our two guys' doctors had noted that the PSA rise was way above what is considered OK (an increase greater than 0.75 ng/mL in one year) then they may not have been diagnosed at stage 4. Don's was 2.8 in four months and the doctor did nothing as it remained under 4.0. I am wanting to get some run-offs of these two pages of the magazine. I'll send you some copies if you like. I also want to take this further. It is just ludicrous. Sending you a great big hug. xx

Carol...hug for you too. Susan, and you, Beth, Krissie, Theresa, Deanna as well. We are all in this together and my thoughts are always with you.

Sue, you have my email addy... Jim is right. There are nutjobs everywhere including Linked In. My personal email has recently been spoofed so that everyone I know, and many I don't, are getting emails from me.

I will email you later xoxo This too is a glorious morning - pink sky, moon (still full) far above the horizon, and the sea in the distance.

Everyone, praying for your guys, and guys...praying for you.

Ok what did eat and drink all day make sure he repeats every day. Diarrhea is so hard on the amont of water the body can keep . Hope this continues to be a daily occurance. Thanks Jim I do forget myself and while I have made exeptional freinds here , I will email Antonia seperatly.
Just make sure you don't celebrate solidness with anything thatbcan upset sensitive balance. HUGS XOXO

Done xx

The food intake is no different...same old, same old. That is what is so puzzling. He has an IV every day (I give it to him using a 500ml bag) so he gets lots of fluids.

Post Edited (Moonlitnight) : 9/29/2015 6:31:49 PM (GMT-6)