Xtandi side effects, results, etc (continued)

Ladies,
It is the start of new week and I hope everyone has a positive and productive week. Good thoughts coming your way for both you and your men!
Southern Comfort

Thank you southern comfort, I am asking for a positive week also. My sister came to visit for So CA, for 10 days, hoping we have at least a few sunny days for a trip to the Cape. She is very emotional over the loss of my Jim, and rays at the drop of memory, but I am determined not to let this take me backwards and just enjoy the memories with her. My daughter is gone for 2 weeks, the only I talk to every day about missing her dad so much, so this will be very hard on both of us,she is already homesick and the week just began for her, thank heavens she is in yoga training and will have long busy days ahead to keep her thoughts from missing her daddy.

Thanks MsWW and Southern Comfort for hanging in with us.

Jitters - hope your daughter gets engrossed and calmed by her training. Also hope things go well with your sister. Nice she cares so much about Jim, but ..... I hope it turns out to be fun and an escape. My sister, who is around a bit, coming tomorrow, but I'm the big sister. Have my older brother and wife, who is around very little and even debated telling him about hospice, are coming Thursday and leaving Friday. My other brother coming in next week. Both brothers brilliant, but don't always say the right thing. The 2nd one will probably have trouble not crying.

Tomorrow we are having pictures taken of him and Asia in their uniforms and we got his Colonel stuff ordered and delivered. She would like to try to get them in their civil war outfits too. She tried her dress made for her before she left for West Point. She started doing events with him and a young ladies group from when she was @ 10. She loved tenting out with him. Does not like it in the military . Guess she doesn't have her Popo to be there with her. I'm afraid he'll be too weak to change. Hopefully not to get the pictures. He is so weak and deteriorating fast. He's always proven the Dr timelines wrong. I guess may still be, but to the negative.

Just for semi-funny cant believe day yesterday. My daughter broke her foot yesterday morning (Asia and the little ones mom), my son got a flat tire as leaving here, and as I was waiting with him for AAA, my husband let the dogs in - why he even went out to do it??? I walked in the door and serous skunk smell. Good he's sick, because he would be in serious trouble. Just got one dog. Was up quite late cleaning him. Still working on smell in front of house. Other rooms were closed up - mainly.

You all have a good one.

Thanks smo1, pictures went . They're really nice. He was just so tired. Going to blood counts tomorrow and check fluid retention issue.

Good morning warriors,it's a wet and rainy day here in CT. It's a sad day for me and it hurts to read the struggles that we are all going through. Part of me is so relieved that I don't continue waiting for all of these reports, numbers, scan etc. Then there is the part of me that would love to have Ji back in his recliner so I can be his caregiver forever. Just read a great book Grief and Grieving, so much good information. Spent time this morning in the barn with Jim's horse, even cleaning his stall felt good,it was just being with Jim,so of course I cried the entire time, and played with the barn cat,again Jim's thing..no wonder I am sad today.
My sister is here, it's difficult to see her struggle with her Parkinson's and not know how to help. So much easier to have the mindset out of sight out of mind, but we all know to well that only works for 5 minutes. The best part of my days recently is being with my grandson, with both his parents gone, I have him completely dependent on me....took him school clothes shopping, lunch, dinner, television, and hugs every night. Actually this is nothing new, I just appreciate it more these days, like so many things. Life is fragile.
Doesn't seem like my sister is very excited about me taking her to Cape Cod, maybe it's just hard and and makes her fatigued with the walking etc. booked a special room for the beach and now she tells me she doesn't like the beach..oh well I will enjoy every minute with my granddaughter and her friend, they are both so excited and make the best of what my sister can enjoy.
I now understand why Jim was always so concerned about my mental and physical health when she came to stay,it does take its toll.
Had my upper GI, report NO acid reflux but there is irregularity in my throat tissue that he is insisting I do have the endoscopy Aug 26th,which was an option before this test result.
Thanks for listening to my rant, I so miss talking to my daughter who is at yoga training, sent her flowers yesterday,she is so missing her DAD and her family....driving to have lunch with her Sunday no matter how out of the way it is or isn't...Prayers for everyone..

Passages, how do find time to even think? Would love to see some of your pictures. Can't even imagine skunk smell in the house, my dogs have never been close to one. We did have a very large porcupine in our back hard, so glad we got it out before the dogs found it. Everyone make your Sunday the best it can be.

Jitters, Hope you have a wonderful time at the beach. Being with your granddaughter and friend will give everything such a fresh outlook! Sorry things are hard with your sister, am praying she will enjoy her time there as well. Have a great lunch with your daughter and am so glad everything was good with your latest test. Will pray the throat clears up before the 26th!
Everyone have a wonderful weekend!

Jitters - hope it all went and is going well with sister's visit. Will try to send some pictures. It's shocking to see how he's changed in two years.

Welcome to HW Mandy.

Nhwife - sounds as if we're walking close to a similar path, except Mike has less pain, but his breathing is getting worse and worse. He's had some swelling, but not as severe in feet and legs. Discussed draining in abdominal area, but I think Lasix is helping and he doesn't appear that swollen now. Hospice did send him for that and blood counts. Hemoglobin at 7.6, so they felt he should get a couple of units for comfort - can only do it for comfort - 5 hours yesterday morning. 6 pm our Sunday school had put together a last minute destination picnic in our yard. They brought tables and chairs, food, drinks, everything. Was afraid he wouldn't be able to stay out, but I wheeled him out and he stayed out the hour and half they had decided was the limit. It was really nice. Granddaughter Asia and boyfriend stopped by and hung with the old folks. Her last night home.
The worst part was Asia saying good-bye to her Popo afterwards on Saturday night. She sobbed and sobbed, knowing she'll probably never see him again. Heartbreaking. She's not a cryer. I think I've been emotionally and physically rung out. Lots of people wanting to say goodbye, but they've all been good about staying less than a half an hour, but one. He stayed close to 3 hours mainly talking about himself. It was interesting, but..... Mike actually went to bed and he continued another hour, while i stood. Hospice nurse wants us to post a note that visitors are welcome, but must limit their time to half an hour. Sounds rude, as I said most have been good.

Nhwife - hoping the medicine starts helping. Sometimes it all seems like a lottery, but I wish there were more winners. When's the blood tests next week?

Smo1 - hope pain and all is improving or at the very least not getting worse.

Smo1,
Thanks for asking. Had a good day and a half after transfusion took effect and then crashed last night, except he couldn't sleep. Up and down. It's been rough. Some of his buddies have just arranged a small plane to take him to West Point next week, just told him and he kept saying neat. I don't know if he can really do it. He wants to be there so badly for Ring Weekend.....well really graduation, but that can't happen. Sorry cant type anymore. It's all too much for me.

Catching up on all of your posts and thoughts. Jitters so true about adapting to all of the changes. What seemed so major 15 years ago seems so minor now. Today we got results of brain scan. We were happy to hear that my babe's recent changes are not due to tumor growth but to a stroke. Crazy!!!
Our trip north has been delayed, reservations cancelled, etc. We hope this is just a detour but accept that he has had a major life change again. Walking is very hard for him and he lost arm strength too. We hope to have in home physical therapy that may help regain some mobility for whatever time he has.
PSA doubled and doc is changing him from xtandi to Zytiga plus steroids. Hope the side effects are mild and it slows down his cancer. I know many of you have experience with Zytiga too
Keeping all of you in my prayers

passages..I would leave the plane ride decision up to hubby. If he completely understands the consequences of making the trip, that he very well get worse there, or after returning home, and he still wants to go, then he needs to go, and you needs make peace with yourself thats its something HE really needs to do.

when we first asked Jim if he wanted to do the balloon ride, his response was NO WAY, I asked why and he said he was afraid of dying doing it. I thought to myself, really, you are dying anyway, but didnt say it. then later in the day, for what ever reason, I never asked why he never said why, but he said lets do it, and they did.

What if he passes and you never let him take the chance for the plane ride to see her?  He is going to pass, eventually, as bad as that sounds, but would you not want him to pass knowing he had his last wish he deserves it. Then again he may make it and just need a little more pain meds and time to recover.

I understand what you are going thru and my heart aches for you.

we can chat when ever you want or need to, prayers for your family.

 

Well lady warriors...I have been off of this site for awhile...went to Tennessee...thinking about moving closer to one of the sons.....knowing that time is of the essence......
Reading all of your writings keeps me aware of what is to come my way, but gives me a little advance knowledge and with your experiences, I may be able to cope better, knowing what and how I may need to react when certain situations arise.

Nhwife, Passages, jitters99(so good to see your words written on this site again), sm01 and I see Dreamer44, MsWorryWort, Southern Compfort, and all others......
I so treasure your postings and comments, even if it is a hard day, you need to vent and get some of the tension off......how hard it is to watch our husbands become a different person before our eyes......still remembering him as your boyfriend, lover, friend, husband and seeing him disappear a little more every day. It is heartbreaking, everyday, I see little bits of mine disappear, the vitality, the smirk he used to have, his smile (he doesn't do that as often as he did), so many changes, and we, we are changing too.....is it for the good or for the worse?
Take care ladies.......warm and tight hugs to you all.....

Tednsal - we all share your thoughts and are travelling the road with you.
Passages, my husband wanted to take this special trip for us, a last memory maker. We planned and packed and whamoo! the day before we were to leave, he had a stroke. If he wants to go, you can do everything possible to make it happen. No guarantee that he will get there, though. When we went to the oncologist office instead of leaving for vacation, the song "God is in control" kept rewinding through my head. I have a mantra I use when I feel overwhelmed - it's "let go and let God". Sometimes it helps.
It's time for us to talk again about hospice. The stroke, not the cancer, has left my babe very weakened. His doc wants to start Zytiga, but don't think that is ok if he is with Hospice. May be an either/or choice. I think I need Hospice more than he does. Family is out of state and how much can you ask from friends? Most of the caregiving will be on me, and his mobility puts more on my shoulders. I know I'll need support and outside help to even get away for a few hours for my yoga and exercise programs that keep me grounded. Lots on the plate today. Sometimes I wish for a large family coming and going to distract me for the daily reality.
Dreamer44 (Pat)