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Posted 7/23/2013 4:35 PM (GMT 0)
There are going to be a lot of people here thinking about you and praying for you.

Sorry for your loss.
Posted 7/23/2013 5:12 PM (GMT 0)
Bjnemo.....Oh....so sorry........it was wonderful that he had a great two weeks......to have family & friends around was the best medicine in the world. Although U haven't been with us very long......we hope that we were able to help U a little....we willl still be here if U need a sholder.
Take care...hugs all around......
Posted 7/23/2013 11:06 PM (GMT 0)
Bjnemo, I was thinking about you and a couple of the others we hadn't heard from lately. Thanks so much for letting us know, but so sorry for your loss. I am glad that those two weeks worked out. Would love for you to share more about it.
Posted 7/23/2013 11:08 PM (GMT 0)
Bjnemo,

Sorry for your lose. I will be praying for you and your family.

Ken
Posted 7/23/2013 11:57 PM (GMT 0)
Bjnemo, so sorry for your loss. Please do come back. We don't stop supporting and caring.
Posted 7/24/2013 12:41 AM (GMT 0)
Bjnemo,
So sorry for your loss. I too will keep you in my prayers.
Posted 7/24/2013 6:40 PM (GMT 0)
Zimac,

Read your reply re brain radiation. Hubby had 12 sessions starting in Jan through mid Feb. he did well with minor side effects and of course losing hair again. Vision problem resolved and numbness on side of face and tongue about 80 pct better. His oncologist was slow to order brain MRI but did after 3rd request. He did not have brain mets but large bone mets pressing on dura causing nerve problems. The radiation oncol was concerned if he waited too long to start treatment, it would be less effective in reducing nerve damage. I'm so thankful for the wonderful doctors and staff who have been with us through this journey.

Dreamer
Posted 7/27/2013 3:27 AM (GMT 0)
Bjnemo,

May you find strength, courage, and peace during this most difficult time. I am so sorry about your Gene. I will keep you both in my thoughts and prayers.

Surrounded by family - how beautiful!

Zimac
Posted 7/27/2013 3:36 AM (GMT 0)
Dreamer,

It's difficult for us to decipher what SE are from the brain surgery or from the brain radiation. He has some balance issues, probably from the two surgeries. Guess it really doesn't matter anyway. He is improving with his balance by going to physical therapy.

The Cometriq has helped tremendously with the pain. I just pray it continues. Overall, he is feeling much better, but it's a really tough road.

Wishing you the best.

Zimac
Posted 7/30/2013 3:11 AM (GMT 0)
Zimac, is it still helping with pain?
Posted 7/30/2013 4:18 AM (GMT 0)
Bjnemo--Barb,
I am so very sorry for your loss, and I commend you for helping your Gene live life to the fullest. Words are inadequate, but always remember the good times with your love..You "stood by your man". You have my prayers and best wishes.
Bill idea
Posted 7/30/2013 4:42 AM (GMT 0)
Passages,

So far so good. He is not having any pain and has not needed any pain medication since he started the Cometriq. Would be nice if we could get this to last awhile. Time will tell.

How are you doing? My thoughts and prayers are always with you both.

Zimac
Posted 7/30/2013 5:10 AM (GMT 0)
Zimac, a long post on Xtandi thread. Not feeling much right now, just doing and notifying. Right at first near tears a few times, but had kids and people around. Have a couple days without kids or responsibilities (except getting house back in order) or too many people, so may be able to start processing.

Thanks for asking.
Posted 8/4/2013 4:31 PM (GMT 0)
Reviving this thread as I wonder how many of us also have an aging parent in the mix. My 93 almost blind mother is living in her own home and it is her goal as well as her 4 children's goal to keep her there. It's a real challenge sometimes to give her the care needed. Her housemate just gave her notice so now we have to figure out what is needed next and how much more. I am her power of attorney and try to get to her once a month but with my husband's new needs it is a challenge to spread myself. I ended up just going for the day yesterday.
I am finding that I am prioritizing more and more, figuring out what can "drop" by the wayside.
Thinking of everyone who has posted in this thread.
Posted 8/4/2013 4:54 PM (GMT 0)
Wow, that is a lot. I dont know i would have balanced all that now. it's hard enough with the kids, but work and your husband too ... phew.
I was primary caregiver for mom for her last eight years. I did work initially and had Asia. We did have her in an assisted living facility, which transisted to a dementia unit. The last 5 years I was there most every day for lunch, dinner, bed time. At the time it started granddaughter Asia was 5, so she was either with me or with my husband most days. That first year mom was here my daughter was doing basic, and military training stuff; after that she was doing school, civilian job, military job. Just explains why Asia means so much to us. I think sometimes we all look back and try to figure how we did or even now how we'll do it.
Posted 8/4/2013 11:15 PM (GMT 0)
I am also looking after my mom, although she is in an assisted living facility. She will be 89 in October. Her eyesight is poor and she suffers with bouts of severe depression, but is in very good health otherwise. Last year, the day after my husband's 2nd chemo treatment, my dad died. My parents were married nearly 66 years. My dad had been quite sick for about 3 years, so I have spent the past several years taking the two of them to all their doctors appointment, etc. I retired at the end of last school year so I would have time to "care" for all those who needed me. My husband's parents were quite a bit older, so we looked after them when our kids were small. They have been gone now for many years. I have 2 brothers, neither of which live close, so they try to get into town several times a year, the care really is on my shoulders, plus when they come, it means we have house guests, so there is work involved with that as well!
I must say, I wouldn't trade the time spent with our parents for anything!
Posted 8/15/2013 3:14 AM (GMT 0)
Haven't seen any posts from my fellow lady warriors...where are you guys...what's happening in your neck of the woods?
Need some updates.....ladies...nhwife, passages, Zimac, jitters...you still check in every so often?
Posted 8/15/2013 12:44 PM (GMT 0)
tednsal, looks like most posts under Xtandi. I'm going to be checking zytiga now that doc has stopped Xtandi. Or maybe it's time for hospice, think you saw my post on Xtandi side. Every day something new, best is all of the support from neighbors and friends and distant family.
Dreamer (Pat)
Posted 8/15/2013 10:13 PM (GMT 0)
Dreamer,
Please see Passage's post under the Zytiga thread. Many of the spouses there were treated with the drug with varying results. While being treated with this drug as "a last stop" in your husband's journey, you might want to consider "palliative care" as an option versus jumping into "hospice"..Passages might be able to explain the benefits of each type of care along with Jitters..I know nothing except that you ladies are awesome; I hope that each one of you has a loved one to help you on your journey when the time comes..All my best in masking heartbreaking decisions.
Bill idea
Posted 8/18/2013 1:49 AM (GMT 0)
Thanks for suggestions, also posted on Xtandi thread. A new friend, who recently lost her husband to leukemia, has been so supportive. She reminds me that to be a caregiver I have to take care of myself first. She sent a chain email to me after hearing about my husband's stroke. You may have seen it before but I want to share it here because it helped me focus again.

"There comes a time in your life, when you walk away from all the drama and people who create it. You surround yourself with people who make you laugh. Forget the bad, and focus on the good. Love the people who treat you right, pray for the ones who don't. Life is too short to be anything but happy. Falling down is a part of life, getting back up is living."

"Today may there be peace within. May you trust that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith in yourself and others. May you use the gifts that you have received and pass on the love that has been given to you. May you be content with yourself just the way you are. Let this knowledge settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us."

Wishing all of the caregivers a peaceful day!
Dreamer 44 (Pat)
Posted 8/24/2013 3:45 AM (GMT 0)
We need to rally around Passages...sounds like she needs some hugs and some positive notes.....check the Xtandi side effects posting....
How R U doing smo1?
nhwife?
Dreamer44?
Jitters99...R U still checking in every now and then?
We have got to keep fighting people!
Posted 8/24/2013 11:38 AM (GMT 0)
Yes thinking about Passages a lot - hoping for peaceful days for her and hers.
I had my physical last week and I am fine but when my doctor asked how I was, I burst into tears.
It has led my husband and I to bring in more assistance which should begin next week. Let's hope so; I guess I am feeling the stress.
My husband's pain continues and I really have to wonder why no one seems to be able to treat it. We'll be asking our doctor on Monday again about that.
He is still on the cometriq with no serious se's. He does have edema in the feet and ankles, sometimes knees. Best treated with compression socks and massage and keeping the feet up.
Ladies, if you can find something to really connect physically with your husbands it really helps. I massage his feet and ankles every night now and I am so glad to have something substantive to DO for him. Plus we find this a time of peaceful sharing.
I guess my husband is stable for now. Not sure what that means anymore.
Passages, thinking of you and all the hard decisions.
smo1, Jitters, tednsal, dreamer, everyone, gotta keep going.
Posted 8/24/2013 2:44 PM (GMT 0)
Nhwife, hope you can get the pain under control. Does the palliative care team help with thar? You do what you can, reaching out for more help. We do massage too, and when Mark is stronger he does a wonderful neck massage for me. Happy he is well enough for this. His stroke symptoms are resolving, much stronger, and PT to improve balance. Expect the unexpected! No new side effects after change to zytiga, andthankful for that. Thinking about Passages too and pray for safe trip for her family.
Posted 8/27/2013 2:00 AM (GMT 0)
Hi Everybody,

We are still here fighting the good fight. The road is tough and everyday is a battle but we are doing our best. Bob is holding his own after all the brain surgeries, whole brain radiation and Cometriq. Sorry I haven't been on HW as often as I would like to but time is limited right now.

As Tednsal said, we have to keep on fighting. We are giving PCa a run for its money.

Passages, Dreamer44, Tednsal, smo1, nhwife - You are all in my daily thoughts and prayers.

Wishing everyone a day filled with some laughter and little pain.

Zimac
Posted 8/27/2013 4:03 AM (GMT 0)
Friends,

Mike won his race and is in a better place. He passed early Saturday morning just as the private plan landed to get me back. Made ring ceremony. He was fine when I left. The biggest hurt almost has been to get West Point to allow her to come home. It's been an awful battle. She was already dealing first with the knowledge that he wouldn't be at graduation and then telling her Wednesday that he couldn't be at the ring ceremony. She is her hero.

Will be thinking of all of you and will check in next week and try to catch up. Have missed you all.
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