End of life journey

Today I reached out to the MOs office and requested a visit from hospice. I received a call back immediately, and she (the hospice worker) couldn't have been sweeter to me about going down this path. So it seemed the right time to begin this thread, with the sincere hope that it will provide some insight to others facing the inevitability of making this journey themselves, or facing the loss of someone they love.
I decided the best way to do this is to post what Gary and I are experiencing from the day treatment ended. I will update periodically.
May 10th. PSA has risen to over 900 and it is clear that mitoxantrone has quit working. His red blood count is extremely low so he gets two units of whole blood. After that he comes home and sleeps for two full days, eating one whole bagel total, but does drink herbal tea. He is processing. Sleep is the way he does it.
The past several months on this "hail Mary" chemo, mitoxantrone, has extended Gary's life and we have had many opportunities to make more memories together, including a trip to Colorado to see the aspen turn and visit family and a trip to Yosemite with sister and nieces, who have grown from children to adults since Gary's dx.
The dues he paid has been decreased heart function, blood transfusions, and critically low platelets, with bruising all up and down his arms and chest, especially at elbows, from turning over in bed.
He has also developed a chronic cough and throws up mucous regularly, so he takes mucinex twice a day.
Gary's sister Donna has been here almost every week since Christmas, driving home four hours away on weekends, and her presence allows me to work and do normal activities without worry about Gary being alone.
She is our angel.

Dear Beth,
I am so appreciative of you sharing your thoughts in the many posts to encourage other people with their prostate cancer. And of course I cannot begin to tell you how your posts about Gary's life have helped me cope personally with my DH's treatment.

Know that this end of life thread will be so meaningful for all of us.
Take care, dear Beth and Gary

Annie

Dear Beth,
Wanted to post to say I hoped that you would start this tread, so I'm glad you did. When the Caregivers thread was posted several years back, I read with complete dedication because I thought at that time we were getting close, but my husband has made it longer with the Xtandi that he has taken. Now after 2 treatments of Jevtana, this may be closer to home than we want, but so thankful you are willing to share.
My husband was diagnosed in 2001, so we have battled a long time, but Wednesday night he said with as terrible as he was feeling, he wasn't sure if he wanted to continue treatment. The Jevtana has been much worse for him than the Taxotere, so we will see how it goes. He is one week out from his treatment, so hopefully in a few days he will be feeling better.
You and Gary will be in my thoughts and prayers as well as your angel, Donna. What a sweetheart to give of herself!
I'm interested in what hospice has offered to do for you. Do they just visit or do they come and stay for longer amounts of time if you need them? When needed, will they help bathe him or will you need to hire someone to come in? If this is something you don't want to share, I understand.
Stay strong,
Sue

My thoughts are with you during these difficult times...

My Mother and Daughter both died from cancer, in our home, under hospice care...They were wonderful and very helpful..But be warned, watching a loved one die is NOT an easy thing..Hospice will make them comfortable with a morphine pump and supplemental oxygen but nothing to extend life artificially..."A natural death" in both cases mentioned above was actually caused by dehydration when they could no longer take liquids..Internal organs start shutting down one after the other, breathing becomes labored and then it stops.....The process can take several days, maybe a week..It's not an easy thing to watch or be a part of..

I'm going to try to post to where we are right now from where I left off last post.
May 18-May 22: Gary has developed hip pain when he puts any weight on his left leg. In addition to his 12 mg fentanyl patch, he occasionally will take a Percocet. Several weeks ago his right eye began to water a lot, and he developed a tic in his right eye and leg. Sometimes it is continuous, even in his sleep. His MO thinks it's from low blood counts, and not brain mets. Mostly Gary just feels very tired and sleeps. He is determined to make it to his dentist appt on the morning of May 22nd.
He is out of bed in the morning and eating a bagel and cream cheese for breakfast, when a tooth in the lower jaw falls out!!! Gary just looks at it, remarks that he lost another tooth and puts it on his breakfast plate. Okay, I have seriously had nightmares of myself in this scenario, and I am far from calmly continuing to eat my bagel.
At least we were already headed to the dentist. And God bless that man. Our family stumbled upon this kind hearted soul and his staff over twenty years ago, and he has been trying to keep teeth in Gary's head since we moved here. Gary often tells people that he paid for his dentist to get a Harley, but instead the dumb ass is sending his kids to college. The Xgeva was finally the dentists undoing, and once necrosis set in and a specialist confirmed there was nothing to be done, the two teeth he had to pull became history with no bridge. It was confined to upper jaw on one side, so he chews on other side. I cook meat in the crock pot to make it softer to chew. He loves nuts in baked goods, but they are out too.
Also, on May 22nd our granddaughter is born three weeks early. Our oldest son's first.
We travel the hour and half to the hospital where she was born the next day, visit for an hour and back home. Even though Gary naps in the back seat, the trip totally exhausts him.
May 24- Our other granddaughter turns 9 yrs old. Gary doesn't have the strength to get up for the birthday cake and presents.
Today, May 26-Gary is consuming less than 500 calories a day most days since treatment ended. He still drinks at least 24 ounces of fluid per day, but without food and a low red blood count, he has the energy to get up to pee. That's all. Tonight I spoon fed him some mashed potatoes and crock pot meat in bed. Our 9 yr old granddaughter, Isabella, came in and gave him hugs and kisses. She knows where this is headed, and she is determined that she is going to stay positive and show him a "happy face". Her decision, not my suggestion.
Part of my decision to contact the MO and get hospice involved is not knowing what I should be doing right now. If Gary doesn't want his prescribed meds, should I insist and how important are they now? Should I be trying to get him up and eating when I've seen that he feels better and has more energy when he does, or should I let him just sleep all the time as long as he gets enough fluids. What's causing his rapid decline? The cancer is moving in and taking over quickly, or he's feeling depressed and needing the escape of sleep to cope? Maybe there are no answers, and this is the new normal from now til the end. But if so, I'm fearful the end is nearer than I thought.
Beth

Beth, you really are a wonderful writer. And this is just so darn hard to read; particularly as water involuntarily escapes my eyes and blurs your words as I read them.

And also those of Fairwind - such a crushing loss; both mother and daughter to cancer. Sometimes life is just so hard. But then there are beautiful glimmers of light, like little granddaughters(!), who somehow help to keep the train on the tracks.

Please look after yourself through all this, as it would be easy to become compromised and run down, courtesy of the stress (and distress) you are both suffering.

Our thoughts are with you both - every day. Thank you for being so unbelievably brave in sharing your story with us all.

Hugs,
Jaybee&GG

Beth, I echo the thoughts above. Thank you for sharing your thoughts, fears and experience. While it's hard to read, I imagine it's just as hard to write. No doubt it will be a big help to people who follow behind you and Gary in this path, and I hope knowing that gives you some comfort.
And you must be beaming with pride at you granddaughter Isabella's wisdom at such a young age.

God bless you, Gary, and your family

thank you for sharing your WHOLE story here. my husband and i just lost his father to this terrible disease a handful of months ago, and now my husband is beginning his own PCa journey. i appreciate seeing both sides of the coin. the hope in the beginning is important, but the dignity at the end even more so. you are honoring gary so beautifully. sending love your way. xx

May 27th: Today a childhood friend of Gary's, who is also a small plane pilot came to visit. He called last week to see if we wanted to go for a plane ride. I explained Gary's condition as of late, and he said that if Gary wanted to go, he would carry him to the plane if need be. And if he didn't want to get out of bed, he'd just go lay down next to him and visit with him there. As it was, the fog allowed him to only get to a city close to us in his plane, but then he had to rent a car to get to the coast.
I reminded Gary he was coming the last two days, and lo and behold, he got out of bed and ate breakfast, let me help him shower and dress, and then we had a wonderful visit. He also ate a pretty good lunch before going to bed around 5:00 pm. Very encouraging to see that he hasn't lost all the fight. Maybe with a few units of blood and food, he'll be up to going to his nieces graduation party early next month. His mom is coming for awhile then too. As teamchris often says, it's a "roller coaster". Today seems to be the herky jerky pull to the top. I used to look forward to that first big drop where you're heart ends up in your throat and you're quickly climbing up to the top of the next rise. I'd like to skip the drop and ride the boring straight rail for awhile, thank you very much!
Beth

So happy to hear Gary had a good visit with his friend. Beth, you are the epitome of class and dignity with a sense of humor thrown in! I'm sorry you don't have a lot of friends close by. I know I'm just some random person on the Internet, but I want you to know that I wish there was something I could do for you. If we lived on the same coast, i'd do everything I could for you. Sending you hugs and prayers! Sue

Although this is difficult to read (difficult to write), I appreciate you chronicling this new path in your journey together. Gary has an amazing family in you, I just cannot say that enough.

Thank you for sharing your journey. Due to being a caregiver for my parents (father passed 7 years ago), and mother-in-law, I have chosen to become familiar with some end-of-life issues. I have even written a book about being a caregiver and helping family deal with them- and include those resources I have found (had planned to meet with copy write lawyer day hubby was diagnosed- that's now postponed indefinitely). But reading your posts brings it into more focus.
My prayers will be with you.