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Caregivers Corner, Treatments for Advanced Disease, Results, Side Effects, etc. (Part 4)

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Posted 3/4/2014 11:14 AM (GMT -8)
I will have locked this thread to prevent it from exceeding the size the software allows. Please use the continuation thread (--Here--) to continue the conversation.

This thread is a continuation of the discussions started on a thread entitled "Caregivers Corner, Treatments for Advanced Disease, Results, Side Effects, etc." which was itself a continuation. There is a limitation of the forum software that causes threads to sometimes become unreadable if they run much more than ten pages so when a thread runs that long a moderator will lock the thread and link it to a continuation thread so the discussion can continue.

You can always find a link to this thread (and its various continuation threads) on the sticky "Long-Running Threads and Prostate Cancer Abbreviations" thread.
Posted 3/4/2014 1:58 PM (GMT -8)
Peter, thanks for continuing this thread.

Dreamer, (Pat) thinking of you and Mark.

Husband's psa rose slightly from 15 to 18.5 this last month on Xtandi. Not a huge jump, but concerned none the less.

Prayers to all and thanks for posting. It keeps us going!

Cathy
Posted 3/6/2014 5:48 PM (GMT -8)
Peter, thank you for keeping the thread alive and your comments on tombstone epitaph thread.

Cathy, even the small increases are troublesome at this stage for you.

Today a roller coaster ride, one of the big ones at Busch Gardens. Noon time, great report from aide, strong enough for shower, then into wheelchair to go our for a smoke. I brought some watermelon and my babe was actually chewing it. And talking. Good color, clear eyes. Wanted to stay upright in chair most of afternoon, by 4 pm very tired. When the aide tried to help him stand to get back into bed, he had no strength in his legs, like a rag doll. Good thing the aide had the strength to hold him up and move him a few inches to the bed. By dinner time, eyes cloudy, barely able to nod, sips of tea. Cognitively I know he is moving closer to the end. It's hard not to have a spritz of hope when he looked so well at noontime.

Our plan was to have him at home as long as possible, to the end if we could get the home support we would need. The mets in his brain changed the course. I hug him best I can while he is lying in bed, with pillows to keep his legs off the mattress, and more pillows to keep him on one side, and he still can hug back. His hands feel the same, gentle, comforting, as they always have. I used to joke with him that it would be really bad if he lost his English (2nd language for him), but I think I would miss his touch even more.

Is this Hospice time preparing me for when he is gone? Only a little. Now I know I can hop in the car for 5 minutes and be with him. He can pick up his cell and call me 24/7. His stuff is here at home and it feels like he's on a trip to Europe to see his family. I'm numb a lot of the time. I hear the words, take care of me...I do. Exercise classes most mornings, card nights as usual. My girls and friends have been so supportive. The How To books that tell us what to expect; each of us has to find our own way through the forest.

We are going through some of our old albums while I visit him. It's good for both of us, reminding me of the happier times, knowing that we were blessed with our love and more time than we expected to share our dreams.

Pat
Posted 3/6/2014 9:56 PM (GMT -8)
Yes, Thank You PeterDisAbelard for keeping this thread going.......

It is a "humbling thread", makes me look at myself and husband in a different "light" every time I read a new post. Since our move, I have lost or misplaced all of my notes that I would scribble down so I would be knowledgeable of who was who and what was happening on their journey. Well, I have looked and looked, and haven't found them, so I beg forgiveness if I fail to mention particular names in my postings.

Pat (Dreamer44), I hear you and feel your same emotions as Mark sinks deeper and deeper into another place. Yes, those arms, so comforting and warm, feeling so secure when you are being held. How so many of us take that for granted, until it's to late. That is part of the intimacy that we share, a look, a smile, those are our intimate communications. When I read the postings from nhwife, jitters99, Bjnemo, Raddad, Passages, and now you Cathy (Dreamer44), I feel so touched and tears cloud my eyes, that I can't see how to write a response, as I am trying to do now. So many tears, so many of us on this dyer journey.

Husband had to restart back on Jevtana, after 5 weeks off, PSA went from 43 to 79. Fatigue levels still about the same, depression comes and goes. He says he has very little pain, but he is shrinking before my eyes. I believe he is starting to lose his hair again, that beautiful white head. I post on the "My Journey with Jevtana" with the statistics and side effects.

New oncologist says he will only prescribe the Jevtana and not do any other treatments, but might consider clinical trials if PSA continues to rise. I understood that some doctors are doing a combination of the Zytiga and Xofigo, but he didn't seem interested in that method of treatment, plus I don't know if Vanderbilt has been approved to use the Radium223/Xofigo. So my confidence in this oncologist is waning somewhat.

Cathy (enjoylife), that is how my husband PSA started to rise while on the Xtandi, that was in October 2013. He was on the Xtandi from January 2013 till October 2013. I don't know where this session will take us, but I feel alone and am sad to not see a "light at the end of the tunnel" anymore.
Posted 3/7/2014 5:01 AM (GMT -8)
Yes, Thank You Peter for keeping this thread going.

I'm touched by this thread..

I was so blessed to be a caregiver for a 92 year old man from Dec. 2011 to Aug. 2012, (before I was DX with PCa). I treated him as he was my father and the family (three daughters) couldn't thank me enough for everything I did for Mr. Larry. He and his younger brother of six years, hadn't spoken for 5.5 years. I contacted his brother and a couple weeks later, we had lunch. Thereafter, we met several times for lunch and different events. Both sides of the family was overjoyed and couldn't thank me enough. Everyone said I missed my calling! It was very easy for me as I love family and people. Even though the last couple months with Mr. Larry was hard, but we made it.

I've been reading this post and my heart goes out to all that are sharing their journey. Everyday, I pray for everyone on HW and like tednsal was saying in her post about others like Dreamer44 and others, I too feel compassion and so touched that tears cloud my eyes, that at times, I can't see to write a response.

Many things about today and tomorrow, we just don't seem to understand, but we know who holds our hand!

If there's ever anything my wife and I can do for anyone, please let us know.

God Bless you,

Dave
Posted 3/11/2014 12:54 PM (GMT -8)
RIP My babe, my love, Mark took his last flight early Monday morning, Mar 10. Many close to him said he was an inspiration in his fight against PC. To me he was only being true to who he was. His spirit never left, even Sunday afternoon while I held his phone to his ear to listen to his closest family who are overseas and unable to be here. He tried so hard to speak to them, but the cancer would not let his mouth speak the words.

It's so unreal that he is gone. Monday was a blur to me; I was numb. Today, after sleeping very well, not feeling a lot of sadness. Within minutes, my brain started replaying memories and my smiles were mixed with so many tears. Yesterday was the funeral arrangements, today finalizing the obit, contacting more friends and distant family, calling attorney about his will. It occupies the hours and distracts my emotions. Now after what feels like I ran a marathon, I am numb again.

I do want to share a lot more with other caregivers and anyone who visits this thread. I thought about doing a blog, and for now am email my babe's email with my thoughts so that later I can compile into something that may be helpful For me now, recording my thoughts because I don't want to loose them. Editing is for the future.

Healing Well is geared to the healing. It may be that many don't read the caregivers thread. I'd like to share with the larger group how important it is to be aggressive, to change your provider if you have too many unanswered questions. To get an advocate, someone who can dig through all the medical stuff and jargon and help you find the right decisions for you. To understand AND accept that not everyone wants to commit themselves to horrible side effects, castration either chemical or surgical, complications from surgery or radiation. The good news is treatment options are multiplying rapidly. But without a cure, those options will end as Mark's did. Time will tell how long the guys in the zero club remain undetectable. When is undetectable a 'remission' and when will it be considered a cure, if ever? I think the future is very bright for PC, the burgeoning awareness that it is a killer, and like Breast Cancer, a life changing diagnosis.

Praying for a cure for the warriors still in battle.
Pat
Posted 3/11/2014 1:03 PM (GMT -8)
Pat,

So sorry to hear it. But not surprised. There are lots of people praying for you two -- mostly for you, Mark's OK now.

Typo. Grrrr.

Post Edited (PeterDisAbelard.) : 3/11/2014 4:43:49 PM (GMT-6)

Posted 3/11/2014 2:34 PM (GMT -8)
Dear Pat,

I am so sorry for your loss. I have read your comments and followed Mark's journey since joining this thread. If there is anything that I can do, please let me know. Prayers to you and your family.

Please continue to come here if you can. Your wisdom and experience support us all.

Thinking of you,
Cathy
Posted 3/11/2014 2:53 PM (GMT -8)
So very sorry and sad, Pat. My biggest advice to you right now is be good and kind to yourself. The numbness will be with you for a while. Reach out to people. They want to help. Let me know if I can help - I have learned of some good resources and books. And last, you will survive. If I can help we can arrange to exchange emails.
My thoughts are with you.
Posted 3/11/2014 5:57 PM (GMT -8)
Pat,

I'm very sorry to hear of the loss of your husband. You and your family are in my thoughts and prayers.

Dave
Posted 3/11/2014 8:16 PM (GMT -8)
Pat......My heart goes out to you. So sorry for your loss

Nancy
Posted 3/11/2014 8:17 PM (GMT -8)
So very saddened to hear about Mark, but he was so not "Mark" was he Pat? He was a shadow and the spirit of the Mark that once was......he "is" Mark now! No more pain, no suffering with those "side effects", he's free now! I am sad, but not for Mark but for us, the "leftovers", that's what we are.

I think that your idea of a "blog" is a good idea, it will be a way of "cleansing yourself and being open to what your feelings and emotions are during this time. I suggest using Healing Well as the so called "blog" and title it so we all can know it's you and now it will be about your journey to reviving yourself as nhwife said.......

I would cry as I read your postings, knowing the trauma that you and Mark were going through. Making that final decision about inpatient hospice. and keeping his room just as it was at home. I am hoping that those final days were "eye opening" for the both of you. I saw where you did say that you all talked a lot and that hopefully will help you "get back" to where you want to be. It will take time for you to heal, if you will let yourself go to that "place". Those guys of ours, really hold a very special place in our hearts, minds and souls and will always be a part of "us", they are our "soul-mates", forever and ever!

I appreciate your positive comments about continuing to "stay the course". I am very concerned with our new oncologist and his very "closed" attitude about doing anything else except the Jevtana. We will have to have a a very "strong" heart to heart talk with him and explain that we are not at "the end" and will not consider that as our mindset. We may have to go back to our previous oncologist and see what his thoughts would be as the next step after these next Jevtana sessions.

My thoughts and prayers are with you tonight and will be with you every day, as I will stop several times a day, and remember, and think of you and Mark as I look at my husband.

Sally
Posted 3/12/2014 6:15 AM (GMT -8)
You and Mark certainly had a long struggle. Twenty years must be a record here. My deepest sympathy to you as you go through the mourning process. Such a sad time.
Posted 3/12/2014 6:47 AM (GMT -8)
Pat ........

   Thank you so much for what you've said .... and how you said it!

   So sorry for your deep loss .... blessings for your continued strength!

Peace and wellness

Rob & Gizmo

 

Posted 3/12/2014 11:56 AM (GMT -8)
Dear Pat, so sorry for your loss. Both of you are true heros. He was lucky to have you by his side. I am so sorry that this disease exists, I really wish it did not. It is taking 10-20-30 years off of our man´s lives, men, who otherwise would see their grandchildren get married. Such a shame. Love.
Posted 3/12/2014 4:37 PM (GMT -8)
Thank you, all, for your comments. HW has been a godsend for me and thoughts or suggestions from many of the other caregivers truly helped me through these last months. I want to find a way to give back, that may take some time.

Sal, hope you have time to check your email for more personal reply.

I am journaling my joy and sorrow as I walk this new street. It's often sprinkled with raindrops of tears, and later a break in the clouds bringing a warm, sunny memory or a smiling quarter moon. My thoughts are a little like these threads. Memories posts on my conscious level, bounce around reach out to different memories and perspective from time or situation. Sometimes the emotions get a little overwhelming and my thoughts take an off topic break. Eventually, the process wraps up, often feeling just a bit better, and the thread goes dormant. Already, some have 'bumped'.

The Hospice social worker reached out with some info on their grief support program. A little early to put my hands around that, for now taking care of the "business" of death, the day to day jobs that fill our time. Mark did not want a 'service' and that in a way has been good for me. He had a small social network and distant family. My daughters and friends have been my caregivers, regardless of ceremony. While he was resistant to starting with Hospice, we were able to tweak some financial changes to will eliminate some post-death busywork. I do, however, expect the unexpected and know there are going to be some speed bumps and pot holes.

I have moments of peace, believing that Mark is in a better place, that the ravages of PC have left him, that he will be my angel guardian, keeping me safe and helping me navigate the hours, days and weeks ahead.

Pat
Posted 3/12/2014 7:39 PM (GMT -8)
Dear Pat,

I am on the depression forum's and I read that Rob paid respect to you and Mark. I am so very sorry for your loss. This journey is a hard and sometimes lonely. I applaud your courage and the fact that your husband fought so hard. He smiles upon you now and please feel his peace and love in this time.
Posted 3/13/2014 10:26 PM (GMT -8)
Pat,

So sorry to hear about Mark's passing. I have been caught up in the drama out here, so I have not been on the board for awhile. My heart aches for you and your family. Take care.

Susan
Posted 3/14/2014 10:28 AM (GMT -8)
Pat, so sorry for your loss. I haven't been posting lately, but when I saw that you had lost your sweetheart, I wanted to let you know that you are in my thoughts and prayers. Twenty years is such a long time to do battle! We have officially hit 13, even though I know we were battling before the "official" diagnosis. It is indeed a tough battle and you have finished well. You will continue to be in my prayers as you chart the new waters you face.
Posted 3/15/2014 7:28 PM (GMT -8)
Dear Pat,
I am so sorry for your loss. I have followed all the "warrior women's" journeys since I joined this forum. At times while reading about Mark's pain and determination to live I almost vowed to not read anymore but realized the struggle you were going through so I "maned up".
I have 4 "stepping out in pink" t shirts since I believe in supporting women with "breast cancer". Please don't neglect your own health and that applies to both you and all of Bud's beloved warrior women.
I have thought for days about what I could do to console you and in the end I feel that your friends can do that job best. You had to be strong to take care of Mark so I believe you will live life to the fullest and be fine.
Bill idea
PS. All Caregivers. You ladies are the most important part of most men's lives and many of us are supporting you in fighting BC. If you desire to help men in the fight against PCa please look at Jerry L's thread on the USPSTF and vote. It's too late for your men but it can help others.
Posted 3/18/2014 3:52 PM (GMT -8)
Week two, day two, one day at a time. Lots of memories floating by, some I want to pause to enjoy, others I have to pause and dig a little. I frequently pass the house where we first lived and first shared holidays together. Our favorite beach, piano bar, park bench, TV show, books. I miss our quiet time together sharing ice cream from the same bowl. Some memories are not for prime time, though, but fun to remember.

As I put my wedding band on this morning, I wondered how long would I be doing that? There's no rule book for grief, no Emily Post advice. What's right for me, for this time in my life, and for those I love and my love's memory. I have had some advice: to stay busy and to stay in the moment. I don't want to "stay busy", although it's somewhat necessary some of the time. I want to have down time for those memories while they are fresh. I want to hear the windchimes in the Hospice house gardens. I want to sing a few bars of Mark's favorite songs as I walk through the house. I don't want to stay in the moment either....or travel too far into the future for now. I want to revisit the past, hug the memories, work through the sadness and anger that some of the memories bring.

Did I mention the friend who congratulated me on joining the widow's club? Sensitivity is not her strong suit. It was not until later that I realized the price of admission to that club is more than any of us want to pay.

Going through papers, clothing, stuff. Never thought he had so much stuff! He was a "keeper" and I was more practical. Bring something new in, something old goes out! So happy he was a Keeper! Seeing some of his history before we met that he had not shared with me as well as old pictures of his childhood. Looking at his graduation pictures and high school reunion photos, the number of participants decreases almost exponentially every 10 years. He will miss his 50th! Seeing his Masters transcripts and knowing the challenges he faced to complete that level of education. His temporary asylum ID card from France while he awaited asylum in the US. The picture of the ceremony in Boston when he became a citizen and how proud he was of that. He never took our freedoms for granted. His diversity enriched my life every day.

Those who have been on Provenge may have a nice wheelie backpack that comes in a box of information when you are accepted for treatment. I think I'll keep that and if you see a woman with a provenge backpack in an airport, it may be me. I'd like to write about the dollars and sense of PC, what price life! I'd like to write about the ethical, political, financial aspects of extended PC treatment, but this is not the forum for that. It will help me get to the next place, whatever that is. For now, I'll write about me and Mark's memories and my journey through this phase. I have opened an email address on HW if you want to contact me directly, possible share phone numbers. I pray that research finds a cure or at least for now better treatments and current therapies applied earlier to ensure that fewer caregivers have to follow this path.

Keeping the candle lit for my babe
Pat
Posted 3/19/2014 1:48 PM (GMT -8)
Pat, (Dreamer)

I get a lot of insight reading your posts. You are such an inspiration to me and the others here. Thanks for making your email available. I would like to send you a private note.

Sal (tednsal) your situation is similar to mine, and it's all such a mystery to me as to what the next treatment maybe, but the Oncologist has mentioned Jevtana after Xtandi. They are always coming up with more methods on fighting PC. Such a struggle at times to remain positive, but it seems to help in the long run.

Bill (gunfighter) thanks for your post for thinking of us caregivers. Very thoughtful of you.

Prayers and hugs to all of you here.
Cathy
Posted 3/26/2014 7:55 AM (GMT -8)
Pat (IDreamer44)

I don't know what to say, as I sit here with tears. Of course, we are all sorrier than words can say.

Thank you, so much, for your posts and, now, your day-by-day journal.

It means so much to me.
Posted 3/27/2014 5:20 PM (GMT -8)
Time seems to be playing tricks. It's not even 3 weeks since Mark passed and it often feels like months ago. Then a memory of his last day or two pops up and it feels like I just left his room at Hospice. Got a nice letter from Hospice staff, what to expect while going through the grief process. Hmm, I checked all but one of the "how you may feel" list. One thing I realized today while talking with another woman whose husband died a couple of year ago. I was more anxious, more distracted, more distressed, more exhausted, and much sadder during his last month than I am today. It was absolutely the most painful experience I have faced in my 70 years, watching my babe slowly slip away. It may have been the tears dripping down his cheeks for various reasons in the last weeks. It may have been his discomfort from being in bed and pain when the nurses had to reposition him. How many times I worried how I would make it through the next hours, days, maybe weeks! I could only hold his hand, rub his head, wipe the tears, and tell him of how much I cherished every day we had together. And telling him he could go, that I'd be OK, that his angels were ready for him.....so hard. In retrospect, so precious this time was.

Of course I am sad, have tears throughout the day, but I'm stronger every day. It's not easy choosing what to keep and what to donate or shred, so many decisions over little things. Next week if I have his death cert, I can start making the changes to our accounts. I got teary at my PCP's office when I asked them to change my emergency contact. I get teary talking to his daughter, her birthday tomorrow, and know I can be her rock, if just for a day. I'm making decisions, not quickly, letting the problems or questions simmer for however long is needed and then the answer comes out of the blue sometimes.

I truly hope that the other caregivers have years to go before they walk this road. I know for a few, that will not be. And for those who are further along this new road, thank you for the guidance you gave in those days and weeks after your losses.

Pat
Posted 3/27/2014 7:30 PM (GMT -8)
Good evening Pat

Thank you for continuing to be here and sharing.you have certainly been through a most difficult time. You seem to be moving forward with grace. Keep coming back as you are an encouragement to all that are here. May you find rest tonight and a blessed day tomorrow.
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