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Posted 6/11/2013 5:51 PM (GMT 0)
Passages....sorry to hear hubby is not doing so well.
However, it makes my heart smile to know you seek the goodness that comes out of things.

nhwife.... Best of wishes on the new job!

Anxious to find out about the balloon ride, also! :)
Posted 6/12/2013 2:16 AM (GMT 0)
Thanks MsWW. Really all we can do is keep moving forward, as much for ourselves as for them.
Posted 6/13/2013 4:58 AM (GMT 0)
Oncologist and FP wanted him to be checked before he attempted to come home. it is 12 hours driving. They admitted him to hospital with pneumonia and UTI. Not sure they are checking the initial reason we went in - constant loose stools and pain for last week, which has never been an issue for him. Fever of course. Good news his counts were decent - his hemoglobin was real good. If we hadn't watched them, with an observor, pull and label; we would have wondered. They saw our surprise and offered to re-do. Sister and daughter are half way here and stopping for night. Have another friend who has offered to fly down and drive our car back, if we want. People are so sweet. All our staff, so far, have been really great. It was real sad getting back late and going out to listen to the waves and see all the stars. He wanted to do that with me - just the two of us - this trip. He's sad, discouraged, and a tad cranky. :-). He deserves to be.
Posted 6/13/2013 2:30 PM (GMT 0)
Passages. I don't know how you keep your attitude so good. It sounds like you have had more bumps on the road. Sure sorry to hear that. I think that "people are so sweet" to people who are so sweet. You must be a lovely person to know in the real world (not HW because I know you are sweet here)

NH - Good luck with the new job, I think you hear today. My god. Starting a new job in the middle of all this. You are brave.

Jitters........Balloon ride? We are all dying to know

Nancy
Posted 6/13/2013 2:53 PM (GMT 0)
Thanks Nancy - I am anxious to hear updates from everyone - good, bad, or indifferent. It's a connection. Just sitting hanging out at the hospital. Fairly quiet.
Posted 6/15/2013 3:17 AM (GMT 0)
No balloon ride yet, scheduled again for Wednesday if it doesn't rain. His brother and sister fly in tomorrow to spend a week visiting, who knows maybe another fishing trip. His will to live just amazes us all. Our daughter and granddaughters are also coming next Wednesday so we will have a house full of lots of love and memories to share. Hospice did tell him he is declining, but that his will to love is keeping him alive. Pain meds are being increased weekly and circulation in his legs is quite slow and he is showing a lot of mottling, so I just massage them as gentle as I can. Ether the cancer or medications are taking their toll on his memory, hospice even noticed it more now. But he is so excited for all the family to come and I may even let hospice home aide help me out with the house to keep up with all the company. The nurse and social worker will be coming more often now, they have been a blessing. Just asking for a great day with no rain so he gets his hot balloon ride before its too late..
Posted 6/15/2013 10:05 AM (GMT 0)
I did get the job and will accept. littlenm, I have thought I was crazy to do this in the middle of this but I guess there is never the perfect time to switch jobs. I am thrilled to get this opportunity which will keep me much much closer to home on a more regular schedule. My husband is happy with this too, particularly with the fact that I did not take a cut in pay at all. My one big concern was health insurance but my new job has sent me info on that and I am talking with current job about it too. Worst scenario: COBRA. but I don't think that will happen. Current job covers thru the month; new job starts first of the month. Different insurance companies so that will take adjustment.
Meanwhile he has almost good days. The hot flashes are really bad now - we are going to talk to the doctor on Monday about that. We see our onc. on Monday. No tests to discuss but she may be talking next treatment. I think he is going to say nothing until after our vacation in July. Plus we are still waiting for radiation to finish its work.
He works hard at keeping his attitude positive. It is so hard when every day is DIFFERENT.
Jitters, crossing my fingers for the balloon ride.
Passages, sorry about these down days, I can relate all too well.
Everyone else, thinking about everyone.
At least today has started out very nicely with NO rain!
Posted 6/16/2013 2:31 PM (GMT 0)
Still no balloon ride, rain rain please go away. We have to plan this several days in advance because its more than a hour drive away..we pick a day that's forecasted for no rain..and up pops a thunder storm..
His brother and sister are here, he is so happy. Daughter and grandkids come Thursday. Can't get much better, well it could in so many ways..but we will enjoy what we have..
Happy Father's Day everyone.
Posted 6/16/2013 2:54 PM (GMT 0)
Warrior ladies- Hope you each have a beautiful day today. So many with hubbies in such pain! My husband was to his oncologist last Thursday. His PSA for May was .19, so the # is staying low. He has been on the Xtandi about 8 months now and has continued to have blurry vision and now aches all over his body. His body has really aged in the past year. He didn't say anything to the doctor about how he hurts. The doctor already told him he doesn't think any of the pain is from the medication, so guess there was no need in saying anything. He tries to keep busy and keep his mind off of how he feels.
I hope there is a balloon ride soon, for wonderful visits with family, great new jobs, many shared nights of star gazing, no hospital stays, and a few pain free days in everyones future!

Happy Father's Day to each of your sweethearts!
Posted 6/21/2013 3:02 AM (GMT 0)
Okay friends..balloon ride happened yesterday. Let me first say, everyone is okay without much injury. I will make this as short as possible. Set up and lift off was just wonderful. Getting Jim in the basket wasn't easy but he made it. Myself, brother in law and 3 chasers in van. Jim our daughter and the pilot plus two other ladies he managed to squeeze in, when this was suppose to be a private ride. Oh well. Not much communication and no visible sight while driving. I call daughter on about 35 minutes in and daughter says cant talk getting ready to land in field. Finally we hear piglet say in field off Maple st, we head that way. Daughter text and says very very hard landing, hurry we all fell on top of Dad and the basket was drug about 80 feet, just get here.....you can only imagine my nerves. We see them out in the middle of a newly planted pumpkin field and we need permission from land owners to get out there to them, we think we talked to owner,shows us way out but it's ALL mud, we head out in van and get buried in mud. Daughter runs to me asking for pain meds for Jim he is sitting in chair..I give her his meds and water she runs back put, field owner comes starts yelling about ruining his field, she yells back and takes a drink of water along WITH HER DADS PAIN MEDS finally reaches her dad and realizes what she just did and runs back to me frantic about meds she took and her dads okay just really shake up no blood but hurting. Mean time we have to explain to field owner Jim is terminal we need to get him out ASAP need help with a tractor, he can't walk...on and on,man cools off and gets tractor to pull van out,but Jim has to walk 100 feet in ankle deep mud with walker and his brother helping, can't carry him he hurts to bad. Daughter is trying to make herself puke the pills up while I call poison center to see what to do. She is now getting high from meds and Jim is finally sitting in van and has no idea what is happening. Hospice nurse meets us at home in one hour. Over all physically I am probably in worse mental shape than all us us. Daughter is high, Jim is delirious ,literally ...he tried to open car door driving down freeway thinking he was in his recliner, and thought our 14 yr old grandson was driving. Home, nurse says physically he is okay, very bruised..you know blood under the thin skin..not broken skin he had gloves on. Our daughter and her kids had flown in while we were gone, he had no idea who they were, I am still a basket case. He is trying to watch TV and asks who nurse is and wants his milk dud candy...yes candy. We give him morphing and lorazepam and put him in bed and I get up every 3 hours to make sure he responds. Son inlaw had to do same with daughter who sleeps like a baby.
This morning...he remembers nothing after the landing and is shocked to see daughter and grandkids here...3 hours later takes more pain meds and sleeps 5 hours, up 2 and back asleep.
Me...I am taking a Xanax and going to bed for a good night sleep.
He wants to go fishing with his grandson Sunday...not sure I can mentally take it..
Hospice says that his will is keeping him going and all the family love and energy, that when everyone leaves..watch out he most likely will crash, in bed maybe 2 days and be ready to leave...not sure I can mentally handle that either. BUT these last weeks have been just amazing for him, surrounded by love and family...me I am looking for a mental ward to check into.. Thanks for listening..
Posted 6/21/2013 3:26 AM (GMT 0)
Sorry to hear about the rough landing but glad to hear he got his flight.
Posted 6/21/2013 4:08 AM (GMT 0)
Jitters,
Despite the ordeal, I am happy to know that he got his balloon ride in. Take care and bravo for having the strength and courage to make his remaining days so enjoyable and memorable.
SC
Posted 6/21/2013 5:54 AM (GMT 0)
jitters...OMG...I am exhausted just reading what U wrote....you need several of those xanax pills....but what a day...hope you were able to do a video or something to remember the day. Oh my, you are so strong...proud to know you....take care and sweet dreams....
I want to "shoot" my husband....I can't go out anywhere what he get's into something. I went to a funeral this morning, hoping husband would be a "good boy"...but no....I come home and found the whole yard cut (I have been doing it for the last year and a half), talk about a "mental case"...that was me....Asked the "bright boy" just what was he thinking? He said that he felt good and that the doctor on our last visit told him he could do what he felt like doing, Oh great, so he (husband) took the doctor's words and "ran" with them.....I suspected or hoped the doctor was speaking literally. He did this last week, but just a small portion of the yard, and was down for almost two days. Can you say, "steaming"...he isn't thinking of the possible consequences, especially if someone is not here to help him if he has a "spell", or falls and breaks something...it won't heal and here we come with a wheelchair. Just someone come and shot me....it would be better than watching husband try to live a "normal life" when he can't....okay...I vented....now I will get ready for bed...and cry myself to sleep.......night all!
Posted 6/21/2013 11:10 AM (GMT 0)
Jitters, just wow. Wow. I too am exhausted just reading it and have no idea how you managed to get thru that. I am pretty sure I couldn't. Wow.
tednsal, know what you mean, vent away.
Meanwhile we need to call doc this am to get higher dose patches. He is still in total pain. He talked to her the other day without me and he felt the doc was "irritated" with him and did not believe him when he talked about his pain. Believe you me, that will NOT happen this am when I am on the phone. He has the right not to feel this pain.
One other update: the soc. security disability we applied for 3 weeks ago kicked in so bless the gov for that, I guess.
Thinking of everyone, trying to get thru the day with a smile and a laugh.
Posted 6/21/2013 4:46 PM (GMT 0)
Ladies! WOW!

Jitters, how are you today and how is your husband? That was terrible. Hope all of you got a good night's rest and can have a peaceful day.

nhwife, hope you can get more pain meds. Good news on the ss disability. Should help!

tednsal,sounds about right! Sometimes I'm not sure they can think rationally! My hubby seems to get stuck on a topic and can't get it resolved. He talks and talks and talks about it until he gets so worked up I think he's going to have a stroke and then gets mad when I say I don't want to talk about it anymore! This has been going on since the Taxotere, so am wondering if it is from that!

May we have some peaceful moments and some much needed rest!

I'm praying for a rest filled weekend for all of us helping to fight in this battle!
Posted 6/21/2013 7:45 PM (GMT 0)
Nhwife.... Congrats on the new job and on the SSD kicking in!

Jitters... OH, wow! What a ride for all involved. Not sure there is enough Calgon world wide, to calm after that experience.

Tedsnal... I hope things are settling a bit and he is behaving himself. :)

Smo... And I am praying with you.
Posted 6/21/2013 8:51 PM (GMT 0)
Jitters,

I loved your story of the balloon ride. An adventure to be sure. I only hope I can make half as much trouble when I am in his position. Sonny likes to talk about every day being a bonus and wringing all the life out of each one. That was a day where you guys wrung out every drop.
Posted 6/22/2013 2:46 AM (GMT 0)
Wow, wow, wow.
Jitters, First the balloon ride sounds like a nightmare to me, but I'm looking at it more from the caregiver perspective, i guess. At least your daughter enjoyed the "high" :-). Did they enjoy the ride while they were up there? Anyway, it took my breath away.

Nhwife, congrats on job. It gives you something to look towards for just you. So frustrating dealing with the doctors.

Smo1 - glad the Xtandi has not been the total nightmare it was for a couple of us. Not sure the pain could not be from Xtandi though. That's the only time my husband needed regular pain meds.

To all of you on the pain, we have been blessed on the pain issue - so far. I'm not sure how I will be able to handle that. Behavior wise - having the chemo brain and while in SC in hospital he was getting a bit depending - very few thank you or pleases; but he was pretty sick and being in the hospital a rare experience for him - last time in '95 when he had his surgery. Hoping I can handle as well as you guys, even if you think you aren't. Please vent away - helps us all relate

Tednsal, it has to be so frustrating - hard to switch from being peers to being a "mom" to your husband. I know how it was a transition with my mom and dementia, with a mate so much more difficult.

Mine knows he can't do stuff, which is so discouraging to him. Today a better day, by a tad. Did hear back from Dr (obviously bad news) on scans- good news, pneumonia gone; bad news more invasive spread in his lungs and is now in liver. Hopefully the extreme fatigue is from the infections; but who knows. Dr. will discuss what's next on Tuesday - whether to continue on Taxotere or go to legacy drugs or ??? I guess old style chemo - don't think so. His PSA actually came down a tad, but is it time to stop? He's been such a fighter that I'm afraid if he stops treatments that in his mind that will be giving up. He is having breathing difficulties and lots of coughing. He had so many plans and hope for the summer. Was really hoping for him to be good for summer - with girls and before they are both in school all day. The 7 year old helped go in hospital for scans yesterday, while I parked the car and than crawled in for a nap with him yesterday.

Keep posting everyone and thanks to all who keep supporting us.
Posted 6/22/2013 1:32 PM (GMT 0)
Note from Mrs PeterDisAbelard:



my mother who is long gone but still is with me every day would say...
" This too shall pass, take it moment by moment which will get you through hour by hour which get you to day by day"...in short take a deep breath and try to relax, you are in for the long haul.

And, is he up to fishing with grandson? That would certainly be less dramatic!
Posted 6/22/2013 10:04 PM (GMT 0)
Picked up worms today for fishing trip with grandson tomorrow.
Jim's brother and sister leave tomorrow. I'm sure it will be a down day for him even with our Las Vegas family still here for 2 weeks.
He says it feels like he is unable to make his arms and legs to what he wants them to do.
Still trying to figure out how they are going to get him in the boat..we may all need to ride to lake to help and come back to help when they are done. The stress is getting way more than I can handle ...
Posted 6/22/2013 10:21 PM (GMT 0)
Jitters, sounds as if enough is enough for both of you; but it's hard to set boundaries, even if needed. We used to take my mom out regularly and eventually just to one place to make it less confusing for her. We finally realized we were doing it more for us than her.
Posted 6/23/2013 2:27 AM (GMT 0)
Band of Sisters,
You ladies continue to be awesome! I follow all of your posts but can't comment on most of them since all of you know what you are doing. You are carrying on with getting new jobs, submitting for SS disability, waiting in hospital rooms and doctor's offices, and trying to keep track of your "wayward" spouses. I realize that it's hard, but keep remembering that a display of "temperament" or "lack of consideration" on either side is normal and is due to the situation.

I'm so glad that Jitter's husband got his "balloon" ride in. A truly memorable event and since no one was hurt, I have to admit that a "chuckle" or two was warranted. Kudos to you Jitters and "silver stars" to all you warriors.
Bill idea
Posted 6/24/2013 1:23 PM (GMT 0)
Holy Jitters. That is all i can say. Holy!

Nancy
Posted 6/25/2013 12:25 AM (GMT 0)
Jitters, more thoughts coming your way. Hoping it was a better venture today.
Posted 6/25/2013 5:50 AM (GMT 0)
Jitters....it's getting a little crazy for you I am sure. Just close your eyes and take a deep breath and say I am going to get through this if "only" for my hubby's sake, and then smile and look upward and feel strength.
Our dishwasher died last week and we had to go get another one, but since the house is up for sale we just bought a middle of the road type. Husband thought that he could get it off of the pick-up and into the house. Well I knew that was a little ambitious of him, so I got it off of the truck while he napped after we got back from getting it. Then we put it on the two wheeler and he tried to get it into the house...he dropped it luckily, no damage. So I just picked it up the best I could and slid it on a rug and moved it that way (we have tile floors mostly) and got it into the kitchen. Oh poor man, he found that he just isn't as "able" as he thought. A neighbor asked if we needed help, but you know men and their "ego's"....but when husband realized that he wasn't going to get it done, we called the neighbor. Will get him a big bottle of Absolut Vodka as payback!

I need to ask a question & any or as many of you can reply. Husband had eight taxotere treatments and oncologist said that he could have the port taken out. Since husband does have lesions on the lungs & kidneys, I am suspect that the cancer will spread to those areas at some point. Especially when it metastasized to his bones & spread so rapidly. I am leery of having it taken out for fear that he will need to have it put back, if he will need more chemotherapy treatments. What are your opinions on this...of course, the doctor can't say he won't ever need it in the future, but why take it out and then have to have it put back in?

By the way, he is still "holding" while taking the Xtandi SA up a little from previous results). ....still fatigue and the usual pains spasms, Aleve and Lortabs for now.

Everyone, I read your posts and updates and smile, weep or shake my head, and wish I could wave a magic wand and make it all better...but I can't. Please continue to stay strong even in this adversity...
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