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End of life journey

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Posted 6/8/2017 12:28 AM (GMT -5)
I guess I'm doing the book club backwards. I read TA's book several months ago and really enjoyed it. Now I'm reading "When Breath Becomes Air" and like Cyclone, taking my time and bookmarking quotes. It is quite profound and the timing is perfect. I get books on my Kindle.
Today Gary was up for only a few hours. He ate dinner in bed. But he is still eating and he's drinking a lot of herbal tea.
He is now determined to go to his nieces h.s. graduation party on Sunday. It really helps him to focus on a goal. His Mom will be here for two weeks after that.
I am so comforted by the posts I get from my HW family, and while I haven't replied to all, I read and reread every one of them and share your encouragement with Gary.
Beth
Posted 6/8/2017 5:55 PM (GMT -5)
Beth, Just want you to know I'm thinking about you every day and sending you hugs and prayers.


Mods: Is there anyway you can keep this post at the top of the page so those of us that are following along can check on Gary and Beth quickly without having to scroll down and search for Beth's original post?
Posted 6/9/2017 12:02 AM (GMT -5)
Thank you Sue. I'll try to keep it from falling too far down. I wasn't posting as often because we are in "wait and see" mode while the liver biopsy tissue sample is out being tested for the specific biomarker Gary would need to get keytruda infusions (I posted about that in a different thread) Still no word back in over a week.
Today Gary went to the dentist again. He wasn't sure if he wanted anymore dental work. His teeth are failing so quickly. Today was just to replace temporary crowns with permanent. There was no extra charge so why not? And our dentist provides a one year guarantee on his work or he replaces free. I hope he gets to test out all or most of that guarantee, but it's not likely. The dentist also told him that another back molar is rotted to the nerve, and he can't believe it's not hurting badly. He wants Gary to consult with an oral surgeon because his jaw necrosis is so terrible. And he has severe dry mouth.
Afterwards, Gary came home and ate a big bowl of menudo (ick!!!) and strawberry custard shortcake I made (yum!) before back to bed. I had a puke bag ready just in case, but he feels fine.
Beth
Posted 6/9/2017 2:03 AM (GMT -5)
Just saw ISU's post on page one...re The Fault In Our Stars...the quotes he cited are as close as any is gonna get this side of the veil to mystery of life and why as Kiergagaard posited..."the instant is the gateway to eternity" and why einstein's quicky explanation of relativity ...' a few seconds with your finger on a hot stove seems like forever...while an hour with your sweetheart...but a few seconds '

a remarkable quote thanks for sharing...really glad that he put that to paper...know I can see it read it here it know it as if it were mine...and even tho factually un true 'in the reality of fabric' could there be anything truer? wave particle...particle wave...who gives a RIP...what is will always be what should be...{ a very hard truth to accept...yet liberating when done}... transfigure your figgurin.{you will not be recognized tho surely realized}..substance evidence... so simple...yeah or nay...sublime beauty...pulsing when nothing is there...because its here...its here...I can see it...I can see it...if you are having trouble seeing it...USE my eyes...use MY eyes...use my Eyes....reflect past the reflection...be on " the road not taken "...framed in imaginations deep woods...there...there ...near the drawing room...go...no one goes there...any more...only dreamers

Nuff...Nuff I'll be in the drawing room for a bit...never weary...some times teary...sometimes cheery... 'ride a sunbeam with Uriel '...on to Eden...on to Eden...time is tight...save the light....
Posted 6/9/2017 5:48 AM (GMT -5)
Dear Beth -

This thread is, for me, our community at its best. The essential issues, large and small, so thoughtfully, lovingly articulated. You may cry, we may cry, but you don't blink.

Thank you for keeping it so real, so authentic.

Blessings on you and Gary.

Wilderness.
Posted 6/10/2017 3:47 PM (GMT -5)


Conversation between the characters Augustus "Gus" and Hazel, both of whom have been diagnosed with cancer, from John Green's book THE FAULT IN OUR STARS:

"I like this world. I like drinking champagne ...

And now ... I don't even get a battle. I don't get a fight."


"You get to battle cancer", I said.

"That IS your battle. And you'll keep fighting," I told him.

I hated it when people tried to build me up to prepare for battle, but I did it to him, anyway.

"You'll ... you'll ... live your best life TODAY. This is your war NOW."
Posted 6/10/2017 10:20 PM (GMT -5)
From When Breath Becomes Air...Paul's parting thoughts to the daughter who would not remember him.
"When you come to one of the many moments in life where you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man’s days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more but rests, satisfied. In this time, right now, that is an enormous thing."

Last night our granddaughter and grandson spent the evening with us. Today Gary and I were talking about the grandkids, how much joy they bring. How excited he was to see baby Vanora come into the world, and how much Beto adores him. He said he thinks he's too young to remember his P-Paw. I disagreed with him. He's only two and a half, but he was using sign language for grandpa before he started to even talk.
I read Gary this quote. It seemed to comfort him.
Likewise, Gary has said in the past that he doesn't really think he did anything special in his life that really made an impact. OMG...he really doesn't understand how very special he is to so many!!!
I have been making it a point to remind him as often as I can during one conversation or another of the times that he did something that was really outstanding or made an impression.
Not that I can get through half of them. Gary has never met a stranger, and just walking down the street he will have some dear little old lady fawning all over him because he took the time to stop and ask her "And how are you doing today young lady?" And on and on from there. The master of brightening the day of anyone in his path.
He's my hero, but I'm standing in a long line of many others who share my sentiment.
Beth

Post Edited (celebrate life) : 6/10/2017 9:24:09 PM (GMT-6)

Posted 6/11/2017 12:41 PM (GMT -5)
Beth,
You picked one of my favorite quotes from the book:

"do not, I pray, discount that you filled a dying man’s days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more but rests, satisfied. In this time, right now, that is an enormous thing."

Most of us don't really understand the impact we have had on others at the time. I'm glad you are able to tell Gary. I think of you both often. Stay strong...you're so brave!
Beth (from VA)
Posted 6/11/2017 6:31 PM (GMT -5)
Beth (and Gary)

I have read through this thread after a very long absence and it is breaking my heart. Paul and I think often of visiting you and having that amazing chowder then deciding to stay right there in a gorgeous waterfront room. I fell in love with that area. We were talking about hoping to go on another trip soon but that isn't in any cards.

Paul still has a little of the medicinal treatment Gary gave him (Can you imagine!) and it has helped him with his pain and nausea recently. He has told me he wants me to scatter his ashes among the redwoods- perhaps Rockerfeller forest out the back of a convertible corvette. I love the idea of the hourglass and will look into that for saving some of his ashes.

I just want you to know that I am here for you and praying for peace and love and closeness. I laughed, and I cried reading your posts and got a laugh out of Paul about the "people dying to get in" crack, which is something that Paul would probably say! I bet $5 he remembers and uses it when the time comes to graduate palliative care to hospice (Lord knows the shenanigans he has put that group through already).

Love and peace to you!

Kristina
Posted 6/11/2017 10:09 PM (GMT -5)
Well, hello Beth,
Its been a long time since I have been on the boards. So so sorry to hear of your turn of events.
I know our turn in the box is coming. Your willingness to share your experiences in an honest and heartfelt way helps us all
Care and respect,
Margot
Posted 6/12/2017 1:34 AM (GMT -5)
June 8: We made it to the nieces high school graduation party, but it didn't quite go as planned. The 3 1\2 hour trip turned into five hours from sitting in Bay Area traffic. I swear it gets worse every time we go. By the time we arrived at sister Donna's place, Gary was wiped out and immediately went into the guest room to lay down. Fortunately, we made a quick stop at a fast food place on the way, and he wolfed down a whole hamburger!
I enjoyed the party while Gary rested. Family members took turns going into the bedroom before they departed and talked a bit with Gary, although he never felt energetic enough to get up and join the crowd. Tomorrow we head back home with his mom joining us for a couple of weeks. It will be good for Gary and I both to have her with us.
It's so nice to see posts from Kristina, Halbert, Beth and Mel.
I began posting on this board when Gary's MO said he had no novel tx to use for Gary. I suddenly needed to become more informed about future tx options. I never expected to find a family. I think that was at least three years ago. I marvel at how much quality of life Gary has enjoyed, not just quantity, since then, and I realize how many truly meaningful relationships I have developed here, especially when I see a post from someone I haven't seen for awhile. I have only met Kristina and Paul and will likely never meet in person most of you, but I feel I know many of you better than a lot of my friends, and I get genuine pleasure from seeing a post from someone whose been away for awhile. I'm not trying to make anyone feel guilty, btw. Just wanted to share how much you all mean to me.
Beth
Posted 6/12/2017 12:33 PM (GMT -5)


From the book BEING MORTAL: MEDICINE AND WHAT MATTERS IN THE END by author Atul Gawande ...

"Our ultimate goal, after all, is not a good death ... but a GOOD LIFE to the very end."


Thinking of you both each day, Beth and Gary !

Iowa State University "Cyclone"
Posted 6/12/2017 12:45 PM (GMT -5)
Beth,

We're keeping you guys close in prayer.

Donna.
Posted 6/12/2017 12:52 PM (GMT -5)
Beth,

Thank you for sharing with us the details of your family's journey. It feels like a privilege to be allowed to see what your day to day looks like - it us a humbling and learning experience for us.

An and Paul
Posted 6/13/2017 5:29 PM (GMT -5)
Gary recovered nicely from the journey inland. He slept all the way home and then went right to bed. No food, just fluids all day. Today he was up and ate breakfast and lunch and took a shower. His stamina for showering is getting closer to being extremely difficult, even sitting on the shower chair. Having the strength to climb a few steps of even getting up from a chair is waning. His breathing is not as labored, but his muscle mass and strength is nonexistant.
Gary's mom will be here with us from Colorado for at least another week. It is becoming difficult for her to make the journey, so sadly, this may be her last visit with her son.
She suggested Gary wrote a love letter to the youngest grandchildren. What a fabulous suggestion!
The tremors in Gary's hands may make that an arduous process,but I think having it in his own writing would be extra special, but if he cant, I hope he'll dictate them to me.
Beth
Posted 6/13/2017 5:54 PM (GMT -5)
Beth:

Thank you for this thread, one of the most poignant ones on HW.!

Mel
Posted 6/13/2017 9:55 PM (GMT -5)
Beth, thank you for doing this, it's more helpful than you know. For me (and please, folks, don't let this comment turn into a hijack of a worthy thread by commenting to me about my situation), I find this very beneficial as I navigate the hospice journey with my mom. We're just over 24 hours into home hospice care, and all I can say is, the folks at Hospice of the Western Reserve are awesome! Beth, I hope when Gary's time comes, you find as wonderful a group as we've found here.

My only suggestion, Beth, is that you do your best to get a DETAILED advanced directive from Gary. Gawande talks about this in "Being Mortal". What struggle with, today, is questioning if at any point we went too far on treatment approvals in the last 6 weeks. Could we have spared some level of suffering by stopping earlier?
Posted 6/14/2017 3:21 AM (GMT -5)
I can only hope that when my time comes from whatever reason, that I face it with the same grace and dignity that you and your husband have shown. We all owe this world a death. There are no exceptions and it takes no special talent, but it is how we choose to live that is the true measure of a life. I don't know either of you personally, but I am humbled by your courage. Thank you.

Tom
Posted 6/14/2017 4:24 PM (GMT -5)
Dear Gary and Beth,

Thank you so very much for this thread! I know you didn't have to start this, and I would imagine at times, it's very difficult for you to put in writing your thoughts and true feelings! Thank You very much for sharing Gary's and your journey with us here at HW! Yes, just seems as if we're a huge family.

For several years now, you both have and continue to be in my thoughts and prayers!

I was born in Modesto and raised in Santa Rosa, Calif. We love Northern Calif.

This Oct. 3rd, will be my 5th year anniversary since being DX of stage 4 high volume and very aggressive PCa. This past Monday, I had my check-up with my Oncologist, my psa was again <0.064 and my Testostrone was "0". I'm also still on my first line of defense! I'm so thankful for my doctors and the meds I'm taking. When first DX, my urologist gave me 4-5 years at best to live, but having lots of friends and family praying for me, great doctors and meds, I'm so thankful I'm doing so well. Yes, I'm tired a lot, but just taking it one day at a time!

Again, I thoroughly enjoy your thread and you always have positive comments when writing on ones threads.

I'm always keeping you and Gary in my thoughts and prayers.

Take care, Dave in Bartlett, TN
Posted 6/15/2017 12:46 AM (GMT -5)
@ Mel...you have no idea how much your comment means to me. You fill my heart sir.
From Tom.. " We all owe this world a death. There are no exceptions and it takes no special talent, but it is how we choose to live that is the true measure of a life".. Wow, What an amazing sentiment!! I am going to remember this quote and share it too!
@Halbert...It's in place and current. Thank you for that. It is extremely important to Gary that he is home and never put on any life support systems.
@Dave: I read every one of your posts and I am thrilled to see you doing so well for so many years. You are an amazing grandpa, and I wish you many more years in the zero club.

Today is June 13. The testing for the biomarker to see if Gary qualifies for Keytruda was sent off the end of May. Still no word. It's a mixed bag of emotions. There is only a five percent chance he will qualify, but as long as there is a possibility, he has hope, and his medonc admonishes him that he has to eat well and be willing to come in for diagnostics, no home health nurse, if he were to agree to more treatment when and if he does qualify. He said patients treated at home do very poorly, overall.
Today I have put as much thought as I dare into what life will be like without my soul mate of 22 years. If I don't think about it some, how will I be able to face the inevitable and keep on going?
Several years back when my kids were teenagers Gary and I hit a rough patch and split for awhile. I was a MESS! I think it was what caused me to develop rheumatoid arthritis. I will need to do better for the sake of my kids and grandkids, and I know I will need the help of family and friends to carry me through the sadness and crushing loneliness of life without my best friend to talk to every day. But most of all right now it is most important for me to convey to Gary that things will be okay here on earth and I will make it without him until we meet again. He has told me the hardest part of dying is that he doesn't want to have to be without me. I hope it's a blink of an eye for him in whatever realm we will find each other again.
Posted 6/15/2017 5:20 AM (GMT -5)
Beth..I recalled this quote from the movie (and book) "The Shipping News", and the perspective is that it takes time. And we need to be willing to take that time.

"Takes a year, nephew - full turn of the calendar to get over losin' someone. That's a true saying. The move will help, you'll see. No place on earth could be better than the place your people came from. Smell that clean northern sea? "

And, I'll share something a good friend put on my facebook page a few days ago when I posted about my mom coming home with hospice care, she and I spent a lot of summer time together, and our parents were all great friends for many years, and we all, both families, did any number of mountain hikes in the White Mountains of New Hampshire. Her comment was, "I hope there are mountains for the four of them to hike together again".
Posted 6/15/2017 8:18 AM (GMT -5)
Beth, I've been following your and Gary's journey as beautifully described by you in this thread. I just want to say that you are both in my prayers.

Jim
Posted 6/15/2017 1:40 PM (GMT -5)
From the book THE FAULT IN OUR STARS by author John Green ...

"I missed the FUTURE ... I felt robbed.

I would probably never again see the ocean ... I could imagine it. I could remember it.

But I couldn't see it again, and it occurred to me that the voracious ambition of humans is never sated by dreams coming true, because there is always the thought that everything might be done better and AGAIN.

That is probably true even if you live to be ninety --- although I'm jealous of the people who get to find out for sure."
Posted 6/16/2017 1:59 PM (GMT -5)
Beth, I followed the breadcrumbs over here from the post in the RA forum you left there. Please know that my thoughts and most importantly prayers are with you and your husband Gary every day. God has given you and Gary an incredible life together and a beautiful grace handling this transition. Remember, he is always by your side.

-Don
Posted 6/16/2017 2:16 PM (GMT -5)
Beth, I've been out of town for several weeks and I'm slowly catching up with HW and I've missed so much with you and Gary's journey! I've always been so struck by the love and tenderness that comes through in your writing and it seems even more so when reading several weeks at once.
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