"Sue Saddened Wife" Continuation Thread

Pauls weight loss could be treatment caused. Is he on Xtandi? That caused Dave the most greive.40 lbs in 3 months. I don't know how but so far I am able to keep him from loosing any more. Muscle mass and tone is non existant. I still make him drink 2 boost drinks every day. Yesterday he had a 3rd one as well because he didn't feel like steak sobwas worse than a kid and just wouldn't eat it. I threatened liver 2 times a week as I struggle to bring his red cell counts up. Blood work today.
Susan does your health insurance cost that much money in the States? Ours here isn't really free and you have heard what type of stuff goes on here.
on a survey on one of the medical sites I have they asked Drs if they could have a do over would they choose that as a profession and 40% said they wouldn't want to be doctors.
So today is palliative and not looking forwsrd to this at all. It had better be short and sweet .

Krissie, that sounds just terrible. I know whey protein (lactoferrin content) can help cachexia/muscle wasting. The isolate is the type recommended.

Don is going into Emerge today whether he likes it or not as he had violent diarrhea last night. Just terrible and uncontrollable. Something is going on and only since these dreadful Ra 223 shots. And they want to put him on chemo? DREAM ON. The urinary problem turned out to be a UTI so I am thinking there is an infection in the bowel as well. The problem is, he is not getting his meds or nutrition due to this. They just shoot through. Unlike Paul, he doesn't want to eat...but all this happens in the evening. Won't touch dinner, complains things don't taste right. (My surgeon friend developed a Ca at the back of his tongue and has no ability to taste at all but he eats to maintain his weight so I don't get this and it frustrates me.) He does have breakfast and then usually has no issues in the bathroom. Everything is "normal." If he had a bowel infection, wouldn't the diarrhea be all the time? I am thinking this could also be due to spinal compression in the lumbar region and that this progresses during the day when he is up and about. This would have to be dealt with quickly. It seems weird that he is both incontinent and having bowel issues and that when he had a DRE two weeks ago, the doc said his prostate was not accounting for the pressure. (This is the top guy at the Prostate Centre. He gave him some Flomax and a requisition for an infection test that came out negative. His GP did another quickly yesterday and said infection was obvious.) Of course, antibiotics can add to diarrhea problems. Our oncologist takes two days to return calls or emails so he's not the one to speak to. We have no one ever to contact to talk these things over and Emerge with its hard chairs is not the place for a cancer patient to be waiting for hours.

Wishing you all the best possible day. xoxo

Post Edited (Moonlitnight) : 5/14/2015 6:45:46 PM (GMT-6)

He only went on it yesterday. Mind you, the diarrhea was the worst ever last night. Nothing so far this morning but this is how it seems to go. I will make sure we test for C. difficile. Thank you.

Pharmacy hell must be going around. Paul has been really upset in the past by being jerked around on med refills and it happened last week to him..... He takes two different strengths- 15 & 30. last month they wouldn't fill 30 until at least two weeks after it was due because of some snafu, so two of smaller was substituted until we could get that fixed (with encouragement from MD and RN), that made him short the smaller doses by a huge amount but not issue as he was taking less overall. Well try to fill the lower dose 4 days early and holy moly someone get the firing squad!!

The pharmacist last week freaked at him trying to fill it and was so nasty he was near tears, and told him he could pick it up this Monday earliest without call from doc who was away in Cali then so that wasn't happening. Okay fine he can deal with a bit of breakthrough pain.

We discussed these issues with doc when he was here yesterday and was supposed talk to him, but I told him not to cause a fuss as I work there and they had said the refill could be picked up now anyhow, so I thought we were good.

Waited until today (kind of forgot yesterday!) - stopped by the pharmacy expecting it to be waiting for me only to be told he had no refills at all avail, told he picked everything up already and nothing is due- dirty looks ensued at me like I was a criminal. BS... I know they had the hard copy, etc... So I went back to working and looked up on my phone and sure enough it had been a month since last fill and it IS overdue now.. I called now and pharmacist said nope no refills, then she remembered that she denied it last weeks fill and held the hard copy for this week. Then the tech in the background started yelling and saying he already picked it up (despite the computer saying otherwise) and they were arguing with me over it!! The pharmacist said she would have to check with the tech... & put me on hold forever so I couldn't hold any longer as I had things I needed to get done. Come on!!

I ended up frustrated and furious and in tears over this pissed off at the treatment we get. I have decided that I will go to another pharmacy 10 miles away instead of in building where I work as this will affect my job at some point if this continues because I am going to flip out on them!

Never did get the fill..... Bad ending to a good day despite the significance of the date...

Are they giving him 2 units? It might give him a good boost to get him through the rough stuff. What about blood boosters- Procrit, epoetin/Epogen? Has that been discussed? I have patients that come in for weekly Procrit of 60,000 units- one is in their 90s and seems to help well...

I hear you on the nursing 24/7, its never turned off is it?

Those same people in the pharmacy will hunt me down when they need something as they know I will get it done. I take parts of my lunch to deal with them sometimes and work hard to help whenever I can. I might be finding myself too busy with my own work to be so helpful and honestly I don't even want to talk to them at all right now!!

Krissie , I give you huge credit girl to be working, That is the hardest thing in the world to do. The only good thing is its a break away from what is going on. Thats why I try to get out when Dave is napping so I can get my mind to a diffrent place for just minutes out of the day. I actually had a couple of years to work before I can collect cpp pension. We are using up a small amount of money I had set aside for going on a yearly vacation in our olden golden years.I am lucky that I had that as this is as far away from being a vacation that there ever could be but I wouldn't ever be sorry I am doing this instead of a trip to Hawaii.
For us the travel to cancer centre takes days out of the month and where i did work the very first appointment that i was able to secure on short notice went over like a lead balloon. It was even mentioned that Dave could go there himself and this was very short notice, I had worked there for 6 years was never off sick 1 day . It took a couple of months to get it worked out so I could quit which I did with no notice on Friday September 13th ,2013. I hope that gives them a day to remember. I have never walked througn the doors of that place again!
I get what you mean about the going 10 miles out of your way so you don't have to deal with that sort of crap.
Today we have home care but I am going to cut that down to every 2 weeks if I can. We need to live life thats left instead of having days and days of time takers that don't produce benifits to Dave.
Antonia how is Don doing with the diarrhea? I sure hope you can get a remedy for that.! ((Hugs )) love sue

Well I got the meds today, and having that issue addressed. Somehow they were ready to be picked up this morning- Imagine that! I have alerted those that need to be and will be having more discussions about this in the next week. I was a bit hurt that both parties who were involved didn't reach out in any way to apologize at all. After all I do for them as a coworker and as a person.

We have the PET/CT results but haven't seen the actual pictures, and they have been notorious for missing stuff but this one actually mentions Herman the giant incisional hernia. There is a mass in his pelvis that's new and has uptake.... 3 cm... Easily US Guided biopsy it says so that's good. Most other stable, even a couple lymph nodes had shrunk a couple mm. Concerns over his jaw area... Lung nodules stable (PHEW I was so worried they would be so much worse) and no uptake which makes me wonder if it is sarcoidosis and not mets.... Would make the POTS make sense and if we can treat that there is half the battle there! Waiting to hear next steps from onc doctor.

Hey there- in a little bit my youngest daughter will be here on her way to Tampa area for a teaching interviews!

We looked back over Paul's PET scan and I realized the mass could very well be a deep bruise from laying on that side if its where I think it is. All it says is lateral to the greater trochanter of the femur without laterality and in the subcutaneous fatty layer.... The "impression" says it would be unusual for Pca mets presentation but questionable or something and in area amenable to US guided sampling. I have noticed that the radiologists there aren't very verbose and skip lots of detail that could be helpful. The jaw issues very well can be infection and we will follow up with that.

So my consensus of the PET scan is very hopeful.... Considering several lymph nodes are smaller, the lungs are stable, and seems nothing new on there that is alarming. PSA has remained stable so no signs the Lupron is failing here at 1 year mark. He will have his PSA and labs Monday probably.

Now on to solving some of the other stuff..... The lungs... what is that? Is there an underlying cause of the cardiac stuff? I think its time we discuss having a bronchoscopy as that can be diagnostic with lavage and least invasive. Labs can give us an idea if the POTS is related to adrenal function as well which is a possibility. I just want him fixed....NOW... He will also do the genetic testing that we found so we can see if there is something there- BRCA, etc. It won't hurt anything and all he has to do is spit in a tube for that. Some simple tests will help rule out several things and its time we ask for them to look around. This whole "well he is terminal" garbage isn't good enough. They need to treat him as if that cancer was not there and get to the bottom of this stuff that is what is really affecting him the most.

I would love to see him doing well enough to have his incisional hernia fixed too since that causes so much pain.

But for this weekend, I will enjoy my daughter's visit and hopefully some of Atlanta with her and Paul too.

Hope you all have a nice weekend with moments not all about the C word, unless its candy, cake or cookies or something good that begins with C! :)

Mel,
Thank you for your post! This is such a nice safe place to spill out our hopes, dreams and worst fears to a bunch of folks who really do understand and care. I hope you never have to go through these types of struggles..and you did add something substantive..you gave us words of support!

Mel thanks for the support and for the chuckles!! That's wicked funny!!

I am not sure how the Dribbles vaccine would work but wouldn't results be over time? I k ow from protvac if Dave in fact did get it we wouldn't even know. I reallt don't think he did as he has had absolutely no follow up with that. I think that was a waste of time for us!!
Dave is supposed to be coming outside today to fertilize the yard but I am not sure if this will happen. Yesterday he said he woke upwith a sore right side. The respiratory Dr was really poking and prodding so I thought it was from that. Last night Dave said can I feel anything and I feel something hard and mass like. When I loomup on Webb MD first thing up is liver cancer .Sonis it allready showing a mass in there? But if there is the liver Involment Dave doesn't look yellow at all.
Yesterday he had a shower and the breathing was just no better and he won't accept repeated offers to have me dry him off, but it's coming! I think its the idea of it being the only thing he can basically do for himself. I am hoping blood work is better next Friday and if he needs it they do another pint of blood . This time they are supped to be typing and matching with the bloodwork we usually have done.
One day at a time....stress however is a horrible companion to have day in and day out.

Chrissy ;
Sounds like my kind of day out with a mani and a pedi. One day when time allows I think I will book a massage. I carry my stress right across the shoulders. The day with your daughter is good to and somehow with everything going on its nice to spend time with them. My daughter and grand kids are a hour away from here. I stopped in there yesterday for a small visit when I went to get my water garden plants. I think at times she just does not understand how ill Dave is or not sure if she uses that as a way to make it not be happening.Their lives are busy with 3 kids and friends who don't get it all have said why does she not come a spend the day with us and help out. But what is she going to do she has more at home to do than what I have here. The time with Dave would be nice but as far as working to help ...thanks but its ok. I am far from not being able to look after the house and Dave .
Did you read poor Sals post on care givers corner page? I hope she can at some time come back on here as righr now she said she can't because of all the memories with posting. I think I get how she feels .
Anyhow better get at it busy day today. Hair gets done, plants to plant , the basement is at 3/4 cleaned up and the dump pile is getting bigger as each spent there goes by. I spend a hour or 2 before I wake Dave at 8 ish.
Thanks for you freindship and all of us here know more than anyone else what our lives are like. Love Sue