Xtandi side effects, results, etc (continued)

It has been quite a weekend! Have had such a heavy heart for Jitters and Passages, plus all the other Warrior ladies who have suffered such great losses recently.

We still haven't heard regarding my husband's bone scan. He doesn't want to call and right now, I think it may be best. We see the oncologist on the 24th, so will see what he has to say then.

Found out last Friday that my sister in law has ovarian cancer. She and my brother are seeing an oncologist today. My heart aches for them. She hasn't felt well since April and they just discovered it. Have been looking for a good support forum for them. Any ideas?

Meanwhile, my husband is carrying on with his Xtandi. Doesn't say much about how he feels. Did notice the other night when he was driving his right hand went to sleep. He was busy rubbing and shaking it. He is a hard worker and spends hours every day working in the yard. I think it is good therapy for him!

Hope everyone is doing well.

Thanks ALL for thoughts and prayers,

Asia made it Wed in time for viewing after quite a battle, but had to leave Thursday night after funeral be back for Friday classes and then the long Labor Day weekend. We were hoping she could stay. She got yelled at. Just hoping this doesn't make her last year miserable. She is quite devastated by losing her Popo and worries about me not getting back quite in time to be with him.

Mike would have been impressed by the turnout and all the military honors. The Patriot Guard was there both days, honor guard, 21 gun salute......all that stuff. It was amazing how many people he had touched, mentored, lead, cared for, taught, etc. over the last 36 years here. He was a quiet leader who didn't need to lead. He was quite willing to be the "private" if he needed to be.

I'm finally alone and down from 5 dogs to 2. Son from Atlanta left today. Haven't done too much of the legal stuff, except forced to by a lightning strike very near. All electrical type stuff - TV receiver, computer, modem, telephone, etc. the ups and down of that was having to tell them it was just me now. The face to face was the hardest. As Jitters and Beejane and others know, there are sudden dips and reminders that come on suddenly. Still a long road as I start just doing the basic legal stuff. Our investment guy is going to sit with me Thursday and do the calls and let me verify as necessary. Mike's company computer geeks are putting the saved hard drive in another computer. The issue there was Mike was updating his spread sheet of information that I hadn't seen yet.
I hoping the final bump for now is my son just got back in to Atlanta area and one of his only 3 week old tires flew off across 3 of the 6 lanes. Landed in the median without hitting anyone or causing any more traffic issues then Atlanta already has. He called from the side of the road just about at the end of his ability to handle anything more.
Smo1 hope you get results soon, nhwife, tednsal, littlenm, Zimac(dreamer44, silverlace, WW, Beejane's, just all of you) hope your husbands can avoid the pain and devastation of this disease as long as possible. Jitters we are on this new road. Hoping all your health issues and bumps are minimal. Gunfighter, Peter, Southern Comfort thoughts and hugs for being here for us too.
Been thinking of you all and thanks for allowing me in your lives.

Passages, so good to hear from you. Yes we are on the same road, dips, curves and a few pot holes, but we shall survive, and even ask why and do we even want to. I am going to a support group tonight and feel like its going to be good to hear from others going through the same journey. I did see a phyc dr yesterday, one I see just before Jim entered hospice, he helped me a lot.
My health issues are good, nothing but stress, with that said I am working hard on finding ways to get rid of it..doing some yoga and going to journal and of course the group support and the support here. Isn't it wonderful to see all the people Mike has befriended and changed their lives in some way, shows you wants a wonderful man you had in your life for so many years. So sorry each of the kids had issues getting home , it's just not fair to have additional stress at this time in your life. Suppose to make us stronger???? Makes me wonder why I need to be stronger what else is going to happen that I need to be stronger..kinda scares me. Take care of yourself and I will always have a prayer for my warrior friends here.

Passages:

So very sorry to hear of Mike's passing. It sounds like you were extraordinary in the love and support you gave him, no doubt about it.

I lost my own beloved wife to a heart condition a couple of years ago, so, regrettably, I know myself how devastating such a loss is.

Yet, to sum up what Silverlace said above, "You never get over it, but it does get better."

I hope that doesn't sound too callous. But of all the well-intentioned things that people said to me following my own awful loss, in retrospect that one has seemed over time to be the truest, the most realistic advice that I got.

May you and yours find peace and comfort at this most difficult time, and you can rest assured that we will be here for you if you need us.

We signed up Hospice today. His pain is just too much - it was an awful weekend. All doctors in support.
Hospice promises to help the pain - he is wanting to be pain free so bad.
Details to work out: can he stay on the cometriq? We'll see. We won't be going back to Dana Farber because it would be too much. So if local onc will take on the cometriq, maybe.
But our primary goal is to get him pain free and comfortable. As I told the hospice rep today, I want to come home and see him shuffling about the back yard, enjoying himself. He does too.
While it feels like a monumental step, we feel it is the right one.
Best to all - this has been, is a hard journey.

nhwife, not you too! Oh I am so sorry. I certainly hope for some pain relief. I will be praying for the two of you and your families. Hope things are going well with the new job. It will be so good to have hospice helping you. Whenever we have dealt with them, they have been wonderful.

Nhwife, good that your husband will have more help to get the pain under control and you will have whatever support you may need from Hospice. I hear what Jitters is saying about spending time with him instead of the chores that keep us busy. For me, those 'chores' help to make life seem more normal when so much of the cancer journey is out of our control.

Passages, please know that your words (Jitters and others too) help smooth our paths on what is next although so personal for you to share. That your son is OK and Asia was able to be with you can be comforting while taking care of the other stuff. I hope you will continue to share as life unfolds for you. I'll check here and on the caregivers threads.

Pat

Thinking of everyone on this lost today. I have a very busy next 3 days so I am expecting a peaceful one too. If Jim is watching he knows I am getting better, I will be working outside in my plants and decorating for fall....my favorite thing to do..decorate with corn stalks,pumpkins and mums.
I am keeping everyone in my prayers knowing the journey they are traveling is difficult, no matter which part of the journey you are at,
Beginning, middle or end. Praying that you find some strength and and comfort knowing you have these friends here to chat with and know they have been where you are or they are heading in the same direction. Peace be with you.

My husband went to the local hospice house to "kick start" this pain management. What a day. I went to work in the morning, came back at 11:30, ambulance took him so that he arrived at the house at noon. I stayed until 2:30, went to work, came home, made phone calls, and went back to the house by 7. Just got home.
It feels like a slightly rocky beginning with calling for meds and having to wait a long time. I just have to have faith it will get better but I can't help but feel I took better care of him!
They started him on methadone and dialudad (?) which is the breakthru med. It should be in his system by tomorrow so fingers crossed. I will stay with him tomorrow night.
Exhausted.

Day two and much better. I worked for half the day and arrived late afternoon. He says nurses and aides have atttended him well. I was here when an aide gave him a shower. Very efficient and he was in a lot of pain.
Pain has been mostly managed when he is lying down; now they have to figure out what to do with the bad pain in the right leg. Doctor will be in on Monday to assess.
But they are very nice here: i got to order food which will come here and they'll let me know when it arrives.
I was going to spend the night but I have decided not to: I do need a good night's sleep and I am still exhausted. He understands.
I am sitting by him right now, he is snoozing. He'll eat in a little bit. We'll read, then he'll go to sleep and I'll go home. And I'll be back tomorrow for the morning and late afternoon.
It is nice to be just his wife again, I don't have to manage his pills or his care.
We think he'll be here a few more days.

Thoughts for you nhwife - ((hugs))

One of "those" days. Didn't really feel bad, headache, vision not real good, don't care if I move days. Now that I look back I think I have been having a day like this once every 2 weeks since Jim passed. Think it must be a depression thing, blood pressure is up but don't really feel anxiety, actually no feelings at all..hhmm.
Looking forward to a good day tomorrow after a good nights rest.
Hang in there everyone, will pray for ya'll tonight since I'm getting a head start ongoing to sleep early..hope it works.

I just wanted to say that I have such great admiration for you women who deal with a difficult hand with such grace, and at the same time show genuine caring for others dealing with similar circumstances. It is an extraordinary demonstration of love and humanity.  I helped my dad through his battle with prostate cancer, including the final part of that battle, so I guess I have some idea of what it is about, though I know it is different with a spouse.  To nhwife:  my dad was happy when hospice care began -- he was so ready for it and so grateful for the pain relief and the message that "it is OK to focus on feeling well, rather than battling through the next treatment."  I hope your husband gets the same relief and peace.

With great respect,

Medved