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End of life journey

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Posted 6/17/2017 3:49 PM (GMT 0)
Just letting you know that we're thinking of you both. Hope the visit with MIL is going well. You're both such gentle souls and I envy your relationship. Give her a hug from me.

Today is a homework day for me once this headache subsides. Allergies here are horrible and a bit cranky they're acting up on a day off. Other than that just a slow relaxing day for both of us today.

The class is Women of the Bible and needed to graduate but has me reading the stories of some strong amazing women who have faced many struggles. Not something I would normally read at all but not something I'm hating either.

Sending love, strength and hugs my dear friend.
Posted 6/18/2017 6:29 AM (GMT 0)
@Don..Thank you for finding me and your continued prayers. Same for you from me. As anyone who suffers from RA knows, stress often causes joints to "flare" and I'm no exception. I didn't work the last week of school at all due to do much inflammation from my RA in my hands, ankles and feet. I also didn't have Gary's sister here to help me, so it was best to end the year prematurely. As it was, there were many nice hours the week before last that Gary and I just spent time sitting in the living room with the TV off and talking about whatever came to mind.
I have always had many things going at once and if I don't, I create a project, bake something or join a board (the latter with more forethought than a peach crisp).

Michael and Kukukajoo...thank you for your kind words and thoughts.

It is amazing to look at the Calendar and see that June is more than half over. Gary has a MO visit scheduled for Thursday this coming week, but still no word on the biomarker test for Keytruda. It was sent for analysis the end of May. I haven't posted many updates because there hasn't been a lot to say. Gary is losing ground incrementally. He is eating less often, but still wants to eat most anything if he feels up to it. Many days its only half of bagel and cream cheese. And many days he's out of bed for a short time in the morning and that's all. He is also having increased pain urinating. This has been going on for awhile, with no UTI when checked. I will bring it up with the Dr again.
It was a real struggle for him to get through his shower today. Once every three or four days is what we manage for that chore. I help him with all but the washing of his body and hair. This is a ritual he is comfortable with only me assisting, and I can totally understand that desire. I'd feel the same way. He has a shower chair and I stay in the bathroom with him and mess with my kindle to give him some space and dignity. But I want to make sure he has me right when he gets done to help with his towels. It needs to be about 80 degrees in the bathroom, and I often put an electric throw blanket on his recliner to keep him warm and aid with getting him dry enough to dress. I help him get his clothes off, especially his socks which are difficult, and I put a couple of big towels in the dryer to heat up while he's showering. We installed one of those suction on handle bars in the shower, so he has something to grab to get up from chair or if he gets off balance. His skin has gotten so dry lately that I try to put on a good layer of lotion before helping him back into his clothes. He is still bruised all over his arms and hands, and I noticed his skin is so translucent and thin it resembles tissue paper!
He was ready to lay back and close his eyes before I had gotten him dressed today.
The changes in his stamina, balance, appetite have been so incremental that they are not very noticeable day to day. But our son, who lives a few hours away, comes for a visit after after being gone for a few weeks, sees a big difference in his abilities from the time before.

Tomorrow is Father's Day and both our boys and DILs and all 4 grand kids will be here for lunch. I hope Gary will be able to be up at least a little while.

I know that most of the healing well guys are Father's and many also grandfather's, so may I wish you all a very happy and blessed day!
Beth
Posted 6/18/2017 10:34 AM (GMT 0)
Beth, what you are relating is so familiar to me, it brings back memories of watching my father fail in the summer of 2004. The only difference is that we didn't know what was causing his lower back pain and the losses of mobility until it was much to late to do anything about it.

I trust you will find the strength to continue, and that you have friends to help you with the daily things when you need them. It's great that you're sharing here, but you also need someone "with skin on" with you.
Posted 6/18/2017 1:14 PM (GMT 0)
Beth, reading of the journey you and Gary are on is sad, but at the same time, the love you show for him is so uplifting.
I don't know you guys, wish I'd had the pleasure, but thank you for letting me know you through your writing.
I truly hope Gary (and you) has a pleasant and enjoyable Fathers Day
Posted 6/18/2017 9:37 PM (GMT 0)
Thinking of you both and sending you our love and prayers. Sue
Posted 6/18/2017 10:34 PM (GMT 0)
Beth,
Thank you so much for sharing those simple (yet noble) details of day to day personal care with Gary. All those tender, compassionate, little things... so practical, so loving.
Charles
Posted 6/19/2017 6:33 AM (GMT 0)
We finally got the whole family home together for Father's Day, even though it was a pretty short affair. Both boys, four grandkids, including the newborn just released from the hospital earlier this week, Gary's mom and the kids' mommies. Gary was up for a bit in the morning, but most of the day was back in bed. I took the baby, Vanora, in to see him while she was awake and took some sweet pics of the two. The other grandkids also took turns giving him love. I'm so glad he feels no shame at having the kids see him in this vulnerable state and has welcomed these precious moments. I think what struck me the most was when Isabella's step father took a moment to quietly go in the bedroom and say a few words to Gary privately. He is not related to us, but I am proud to have him as part of our family.
Today I celebrate the man who has never fathered a child, but he will be Dad and P-Paw to my family forever.
Beth

P.S. We've shared similar posts on many threads Prato...appreciate your being there...And Sue, you too. And it's really great having Charles here now as well. Halbert, you've really got me thinking about the person I need to have around when I turn into the velveteen rabbit. Thank you.
Posted 6/19/2017 4:06 PM (GMT 0)
What a sweet day! Sometimes more is said in short times together than in weeks! I'm sure both of you have much joy today! Such love! It is indeed a testimony to all of us!
You are in my thoughts and prayers as you navigate this part of this journey!
Sue
Posted 6/19/2017 4:11 PM (GMT 0)
Your love story continues to inspire us all. Thank you for allowing us to share in your journey!

With love,
Nikki
Posted 6/19/2017 7:16 PM (GMT 0)
Beth,

Thank you for sharing. Continued prayers for peace. Donna.
Posted 6/20/2017 3:38 AM (GMT 0)
Beth, perhaps we can collectively be the Skin Horse to your Velveteen Rabbit. (After a LONG day driving in the rain for Mom's interment on Wednesday afternoon)
Posted 6/20/2017 6:22 AM (GMT 0)
June 19: We finally got the results from the test for the biomarker and it was negative. Keytruda will not be a treatment option for Gary. While this was only a glimmer of hope, it was still a spark that kept hope alive for Gary, myself and our family. We will see the MO again this week and discuss getting more hospice services as needed. Gary has not needed any more pain medication than the 12 mg fentanyl patch and the other various medications are working well for now. I'm not sure what to expect now, as I know each individual is different in how the cancer takes its final toll on the body.
Halbert, I posted on your thread, but I want to thank you for offering your supportive hand while grieving the loss of your mother yourself. Today's news rubbed a spot real bare, and as I tried my best to comfort Gary's mom, who will be here visiting only a few more days, I kept returning to your words. You are experiencing loss first hand at this moment; wisdom based on experience. I gained a realization from your words that those around me view me as the one who has the strength to carry us through. Knowing I have the support of the kind folks here will make that a little more attainable.
Beth
Posted 6/20/2017 10:57 AM (GMT 0)
Beth,

You'll carry it through, because it's what we have to do. The impact will come later, in it's own time. I do hope that you have someone (or some several) to actually sit with you in the days to come, and in the immediate days after. Not to talk (or to stay silent either), but just to be present. The Jewish tradition of sitting Shiva has a lot of wisdom built in.

That (and this is truly a mixed metaphor) and the good old-fashioned Irish Wake, where after the funeral, the friends and family gather for drinks and memories and toast the departed. Have a party. Why not?

If they're available where you are, I'd also encourage you to plan for having a visiting nurse assistant or aide be there at home, at least at night so you can rest. The night shift lady we had last week was just awesome. Very relaxed, very calming. She came in and introduced herself to my mom with a "hello, my name is ____, and I'm going to sit with you tonight". What a wonderful introduction.

Hang in there, Beth. Peace.
Posted 6/20/2017 3:20 PM (GMT 0)
Hi Beth,

Your words are not only inspirational, they are also comforting.
It helps that we are not on this journey alone and we must take things day by day.
I'm so glad you were able to have some family time together.
Every minute of every day is a gift to all of us.
Thank you for your story and the wisdom and comfort that comes with it.
Please know that I think about you and Gary everyday.

Sue
Posted 6/21/2017 1:21 AM (GMT 0)
Beth,

Sorry to hear of the bio marker results. Really am.

Sounds like Gary's pain is well controlled, that's something. Am wishing for the best possible comfort for both of you (body and soul) as time goes on.

Carolyn
Posted 6/21/2017 6:54 AM (GMT 0)
Beth, Halbert,
Thank you both so much for sharing more of these intimate moments. In one case, a wife comforting a mother whose son is nearing death. In the other case, a son who has just lost his beloved mother. And yet, each of you have such empathy and compassion to support and comfort one another, and to allow others the gift of bearing witness to it.
I am in awe and humbled.
Charles
Posted 6/21/2017 5:34 PM (GMT 0)
Beth - I wasn't sure if you'd seen this Keytruda trial which is recruiting at various locations.
https://clinicaltrials.gov/ct2/show/study/NCT02628067?show_locs=Y#locn
I've only been able to leave a message at MD Anderson and waiting on a reply. Hope all is well with you both.
Mary
Posted 6/21/2017 5:46 PM (GMT 0)
So sorry the results came back negative.
Just want you to know I think about the two of you so many times a day!
Pray today will be filled with some moments of joy and rest!
Sue
Posted 6/22/2017 10:31 AM (GMT 0)
Hi Beth
I have just caught up on your posts after a 2 week absence. I thought about you and Gary a lot while we were away, and was hoping you might have had some luck with the clinical trials you were contemplating before we left. I am just so sorry to hear Keytruda is not an option for Gary - how deeply disappointing.
Reading about your Father's Day was beautiful. CuriousCharles sums it up perfectly - I just feel humbled reading your posts.
I am sending you both peace and love, and hope you continue to find some goodness in each day. Please don't forget to look after your health through all this too Beth - your RA sounds very painful.
Thinking of you both.
Jaybee
Posted 6/22/2017 1:07 PM (GMT 0)
Hi Beth ~ I wanted to let you know that I have brought your thread to Ron's attention. We both are sending along loving wishes. Please take care of yourself and rest whenever possible. Your sharing the journey with Gary means a lot to many people.

Also, I wanted to expand a bit on my brother laughing when in hospice. He was telling his stories to his five Grandchildren. You are so right about the positive feelings they bring. This was the day before he passed on. He didn't want to look at the end as, "He died."

Thank you again for sharing.
Posted 6/23/2017 6:51 AM (GMT 0)
Today Gary and I and his mom sat down with the MO to talk about what is the best plan for the near future. It has been so nice to have Gary's mom and sister at some of these Dr appointments. They have not just been told what is happening with their son and brother, they have been present.
They will both be here with me when Gary leaves this earth (they have both asked me allow them, and I only hope that I know when is the right time to ask them to come).. and they will stay for as long as I need them to be after.
We will begin to utilize the hospice services more, as Gary's mom is leaving back to Colorado and his sister back to her family.
We will also have a short visit from Gary's dad and step mom next week, and then it will be quiet for awhile.
As quiet as things can be with four grandkids living nearby.
After the Dr visit we had the youngest three over to say goodbye to Great grammy, until she returns for another visit. Isabella is away spending a week with her dad.
It is impossible to remain morose with impending sadness of losing your beloved with these children demanding otherwise. After we fed, bathed and burped the baby, taking pics along the way, we ate ice cream and popsicles and I ran through the sprinklers with the two year old while his dad mowed the lawn. Gary slept through most of the activity, but he has told me he is comforted by everyone just being around and in no way wants everyone to go away and leave us be!
Other than Gary sleeping a lot and eating much less, our life for now seems very normal. No drawn curtains and darkened rooms with hushed silence and family sitting around crying about circumstances we can't control. We are still celebrating life...but now it's just minutes at a time for Gary, rather than hours or days.
Beth
Posted 6/23/2017 6:57 AM (GMT 0)
By the way, smo1 Sue, I've been wondering how your DH is doing on jevtana. Is he still getting it?
And welcome back Jaybee. I 've missed you. I hope it was a vacation for you and GG that had you away for a couple of weeks.
Aimzee and Charles...Thank you for encouragement. It means a lot...It really does.
Beth

Post Edited (celebrate life) : 6/23/2017 1:00:57 AM (GMT-6)

Posted 6/23/2017 10:24 AM (GMT 0)
Beth, you're doing fine. Just keep living life, that's what it's all about. There is a phrase from the old Anglican Book of Common Prayer that is used in funeral services, "In the midst of life, we are all in death" which sums it up nicely.

Keep living, it's what we do.
Posted 6/23/2017 3:56 PM (GMT 0)
Live your life, live your life.

Thinking of you every day.
Posted 6/23/2017 4:48 PM (GMT 0)
Thanks so much for asking. Yes, my husband, Jack, has completed 3 treatments of Jevtana. He looks so good it is hard to believe he could be sick. So far his biggest problem has been his stomach and then bowels. First plugged up and then running like there's no tomorrow! Each time he seems to feel terrible a little longer. First time he was down for 11 days, this last time it was 13. We were at the doctor yesterday and he feels like he is doing well enough to keep going, so Jack's next treatment will be next Thursday. He looks so much better than he did when he was having taxotere, but he has felt way worse on the Jevtana. Before the first treatment his PSA was 3.7, first treatment it was 4.4, and last treatment it was 4.3. He had no drop until after the 3rd treatment of taxotere, so we will see next week where that is going. All in all, hopefully it is worth it!
So glad you have had company and it has been a good visit. I can't imagine having company right now, yet I know how important it is for everyone to be able to spend that time together! Glad you have the hospice people available. Hopefully that will be a great help for both of you.
Stay strong and enjoy those grandkids and sprinklers!! How fun!
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