Rosevalley - this is for you!

Happy trails!! Loveroflife- it's wonderful to go away to school and so important. So hard to let them go alone. For the most part I loved college and met so many neat people and have such fond memories. I would break the bank to see my kids go. It's far away though. Wish your oldest well - hug her, send letters or text. I annoy my DD2 and text her all the time at night... "Good night I love you. xoxox" Good night moon... she will always be my little girl. I will always love them.

I guess gemzar effects the brain... I was making vegan black bean burgers and had my brown rice, peppers, corn, tomato paste... forgot the sweet potato. Dang. I thought they were easy to make into patties and they baked up perfectly. I dust with bread crumbs. DH and DD2 loved them with tomato and avacado, lettuce and mayo. Tater tots... yep Mom caved it was a kid dinner. Now they are yelling at the TV soccers on!!

Had a lovely conversation with DD2 and she shared how she cried back in Jan when they thought I wouldn't make it and how nice it's been all summer to come visit. It has been wonderful to have so many meals and visits with her. She breaks my heart -they all do. My youngest pleads and my oldest sends me drawings and cards. I will never be able to walk off into the sunset and die peacefully. I will struggle. I have a great family. They will be ok alone they are loved and stronger then they realize. I do dream about dying peacefully in my sleep since I am very tired, achy and hurt a lot. I will miss them so much but this body I could ditch.

Sweet Rosevalley, may your biggest trouble be forgetting the sweet potato!

Your burgers held together without it and you fed your family.

It might have been nice, but it wasn't necessary (it's a metaphor!).

Yes, the "I love my life", but the "body I could ditch" dilemma.

I know it well. Am experiencing my body gently slipping away from my soul-spirit. Like a reptile skin, sometimes it tugs and tears a bit, but all in good time.

Rosevalley, I trust your shedding time will come, but not yet, not yet.

Life and love still course through you and nourish all you touch.

Congratulations my friend. So happy that both Patty and you are having good days now.

Long may these good times continue.

loving kindness, Stephanie

Oh, dear Rosevalley, you're definitely getting knocked about on the treatment pendulum.

So many up-times and down-times - your emotional and spiritual wellbeing so closely bound to your physical wellbeing or ill-being.

Sitting and listening next to you during your up-times and down-times.

Here's a video clip from a made in Hollywood feel-good film. Usually I don't "do" these kind of films, but I heard this song is a good one and it is!

Plus your DD3 might enjoy the signing at the start and the dancing too. The closed captions were even accurate, which helps us hard-of-hearing so much!

Rosevalley, may this ray of joy brighten your day.

love for you and all here, Stephanie

PS, while I wanted to meet you for D&D, our indwelling drains, location of mets, etc., it's been fun to find our common interests! And what I've learned from you about mothering has rocked my inner world in so many good and important ways. Thank you, thank you, Stephanie

Ebru-Mr. Rooster is quite handsome. It's such a different culture to order a bird and eat him for dinner. He looks very healthy and I bet was tasty. Amazing your son played with him and ate him later. My one DD2 won't touch meat of any kind. I am glad you are feeling better and are able to spend time with family and your son.

Hope died over the weekend. On the 3rd. She suffered for so long. I am glad she is at peace and that her family has her memories and love to sustain them. There is a part of me that is jealous to know death is getting out of cancerland. So many mixed feelings. I want to feel better (and can't help myself) and after draining and snippets of time there are moments I feel pretty good. Then I fill up with fluid and feel lousy tired and sloushy. The fact is i never feel good for very long. Those moments are fleeting and sweet but short. Tomorrow is treatment day again. I wish there was an easy treatment that didn't make you feel so tired and reduced the ascites.

Yesterday we went to a BBQ with the deaf kids and had a good time. I ate a hamburger and watermelon it was great. Pretty full afterwards but got to visit with a bunch of folks. Lasted 3 hours then I had to lay down. Pretty grateful to have a nice day with DH and the kids. Trying to remain positive. Chemo tomorrow.

Each moment counts still!

Last night, DS said he was sorry for me that my toe nails were bleeding, asked if it hurt.. In fact, that was the remains of the red nailpolish I lousily took off.. I felt his concern for me and there's nothing to do about it. I am so glad to have waited 3,5 full years not announcing him my disease. Now he is a bit older, still very young, but can at least express his feelings and we share everything.

Oh no! We don't order play and eat birds.. This was the first for me. Honestly, I felt very bad and didn't enjoy any bite of it. The neighbor misunderstood me and bought the poor guy for us. This is real life, though.. I am glad DS experienced this earlier than I did.. We do eat meat and seeing them alive definitely helps our gratitude for their being.

We talked a bit about the life cycle and how the insects will eat our corpses later, etc..

Hope you feel better and enjoy each sec.

Love

Ebru

Yes, hope you get minimal SEs with great response.

Well no wonder I feel so tired and crummy. I am amazed I can eat and am not barfing. My tumor markers jumped 203 points in a week to 1039 the highest it has been in 6 months. The cancer got around Gemzar. So that's out. My oncologist wants to try something that starts with a V and I can't remember what...chemo brain. I said I would try it. No wonder the ascites is worse, and I have clicking in my ribs when I lay down and my oxygen sats were 93% room air in the office... used to be 98-99%. The cancer is building up steam. I need to keep things down so I can take the DWD meds. I have some paper work I need to fix too.

Ah Rose, sending love to you and your dear cat too.

Hi Rosevalley,

Wrote on the peritoneal thread and want you to know that I still feel less than glad that this treatment isn't working so well against cancer, but am grateful that you're being spared the N&V of last winter. May you never, ever experience that misery again.

This recent interview of the author of Tribe makes me like his book a whole lot better.

Danger and hardship certainly characterize an MBC diagnosis - makes sense that we form our own tribes or communalism at bco and in support groups. We help one another through the hard times and celebrate the good - together!

Much loving kindness and caring, Rosevalley, Stephanie

Why Do American Soldiers Miss War?

By Jenara Nerenberg | September 1, 2016

According to author Sebastian Junger, facing social isolation back at home deepens the trauma.

Sebastian Junger is a former war reporter, the author of several best-selling books, and co-director of the Oscar-nominated documentary Restrepo.

His latest book, Tribe: On Homecoming and Belonging, explores the loneliness and alienation of modern society and the haunting question of why soldiers miss war upon their return home. The book flips the script on PTSD, arguing that the isolation faced when returning home aggravates the trauma of combat, which raises the question of how to foster a sense of community and belonging separate from disaster or war. We talked with Junger about the causes and potential of communalism.

Jenara Nerenberg: What avenues do you see that can help cultivate a sense of community and belonging to minimize loneliness and alienation in our society?

Sebastian Junger: I think if we actively espouse an ethos of communalism that it would help. Communalism rises to meet the challenge of danger and hardship. It pops up spontaneously. But we live in a safe and more-or-less comfortable society, so we don't need communalism—so we would have to actively espouse it. The tone of contempt used by our leaders and the lack of responsibility and culpability of those who have harmed our country very, very gravely contributes to the lack of community, as well.

JN: What forces have contributed to us losing that sense of communalism?

SJ: I think it's affluence. Affluence, income disparity, the automobile. All of those things have made our society more individualistic and less communal.

JN: Why is it so important to get a sense of tribalism back?

SJ: Well, the book is really about communalism, shared resources, and egalitarianism. The title of the book is distracting. "Tribe" is a loaded word. There is an amazing book called Our Beleaguered Species by Elizabeth Crouch Zelman about the importance of tribalism to human evolution and survival and the danger that that same tribalism now poses in the modern world. She acknowledges its crucial importance to the rise of human society but the liability that it brings with it in a modern context.

I think she's the last word on that funny duality of human groups. Once you form a group, you're immediately forming another group that's not in your group, right? There's no way to form a group without creating another category of people that are not in your group, unless you make the entire human population your group, which is then a senseless distinction. Her book addresses that duality very well and should be widely read.

Communalism is what characterizes our evolutionary past—and when we're forced back to that way of being, it seems to be deeply gratifying to people.

JN: How do you cultivate community and belonging in your own life these days?

SJ: I grew up in the suburbs, where there was no community at all. Now I live in New York City in a poor neighborhood and I feel like there's something close to a neighborhood community, but it's certainly not at the level of the Kalahari or Kung or somewhere like that.

JN: It sounds like you've accepted modern society the way it is and that it's not really set up for communalism. Are you interested in exploring solutions?

SJ: I think there are solutions, but they're just not acceptable to us. Widespread disaster would force communalism, but who would want that? Banning the automobile would do the same thing, but no one's going to do that. I think there are plenty of solutions, but they're not palatable to people. You're not going to have your cake and eat it, too. You're not going to have the luxury of your cars and air conditioning and planes AND the kind of close communal connections that a survival-level economy forces on people.

JN: So you don't think the rise of co-living and co-working movements—developments like that—are notable?

SJ: Sure, I think small groups of people can function that way—communes in the 60's and 70's, for example—but if you're talking about a society-wide transformation, I just don't think that's going to happen. But that doesn't mean that small groups of people can't create their own circumstances—of course they can. Old-age homes are communal societies. Platoons in combat are communal societies. At the micro-level, communalism does exist. But short of a large-scale disaster or banning the automobile, I don't think it's going to happen on a society-wide level.

JN: Where does this insight about the automobile come from? I didn't see that in your book.

SJ: People often ask me what can be done. The automobile has given us the mobility that enables us to work 50 miles from where we live and enables us to be completely divorced from our immediate community. The Amish have banned the automobile and their suicide rate and depression rate is extremely low and it forces them to live within walking distance of their home—in other words, it reverts them back to their evolutionary past.

JN: Was suicide not common in previous tribal societies?

SJ: The data is very hard to find, but it seems to have been virtually nonexistent. There were ritual suicides and suicides to avoid capture by the enemy—but suicide as a result of depression, which is what we mean when we talk about suicide in modern society, seemed to have been virtually nonexistent.

Good morning, dear Rosevalley,

Sorry this is more about me than you, but I'm reflecting on getting to know you and bco too.

I'm up early downing sauerkraut juice with my zofran to fight the nausea.

Amazing, I haven't had more than a sip of alcohol since a celebratory glass of wine in 1988 and my liver acts like I've been drinking heavily and steadily for some time. Just celebrating not having jaundice or vomiting this morning, even as other liver & peritoneal symptoms floor me.

So, I'm remembering you, my friend, and how we met last November after I finally joined bco. Had been reading off and on for years. It's amazing how often this forum comes to the top of the list for google searches on MBC-related esoterica. The computer kept sending me here, I kept seeing your name, realized you too had an implanted drain, began following the D&D posts and I finally moved from the smaller, slower town of bcmets.org to the big, fast, complex city that's bco.

Glad I came and have met so many wonderful neighbors.

But always remember that I moved here to live closer to you.

Rosevalley, what wonders we both are!

Last November, I was barely on hospice and you were weak at the knees from yet another failed therapy. Your daily N&V adventure was about to start and neither of us would have guessed that here comes autumn in the Northern hemisphere and the 2016 presidential election is about to begin (early voting starts soon). Could our younger selves have imagined being alive for this?

Rosevalley, I hope your interest and involvement in life, including your loved ones' lives, continues to carry you into the unknown future.

And I do hope for myself that the time to pass comes soonish...though I continue to have a good time in this ailing, failing body.

Sending a sparkling rainbow to brighten your day, Rosevalley.

love 'n gratitude, groovin' attitude, Stephanie

Lalady- wow your kitty purrs getting subQ fluids?? That's an 18 gauge needle yikes. He must be a sweet cat! We decided since we did that for our cat Daisy when her kidneys shut down at age 16, that we wouldn't do it to Percy. He's just so mellow and sweet I can't bear to put him through anymore then is necessary. We just support him but he's sooo thin and still eats. play it by ear. I just love this gnarly, skinny old cat.

I love the rainbow FF!! You send the most gorgeous pictures. Ireland must be so beautiful. I feel like I have gotten to tour it through your sharing. My Father's family was from Rosscommon, Ireland. I might be spelling that incorrectly. My Mother's family was from Smaland, Sweden.. mauling the spelling on that too. Ha ha.. I am a mutt!! Most Americans are! DH's Dad was from Scotland. DH has traveled all over the Islands and loved it.

Stephanie hang on so you can vote and ask for an absentee ballot. All of ours come in the mail. I want to vote for a smart, well educated, experienced woman - go Hillary. So I am motivated to get my ballot in. I edited this since we really shouldn't get political. To each a vote and an opinion.

I am so very sad to hear you are struggling with a swollen liver and nausea. I HATE feeling nauseated. Use CBD drops under the tongue and zofran. I have citrus and mint flavored CBD oil. What ever works to relieve your misery. Prayers your way. I am blessed right now to have no nausea. I can't figure it out since the last time my markers were this high I was barfing my guts out. So what's different now? Cancer is such a mind F--k. Never know where you are going except towards death. I figure I feel very tired, sore in my hips, alittle short of breath but am able to eat, no puking- so QOL is still there. Still drawing off liters of bottles... incredible how much fluid I pull off. So I will accept this turn of events. I have my polst papers, need to finish some paperwork. I ate honey dew melon, strawberries and bananas for breakfast. It's a gorgeous day. May we all have the strength to enjoy this day, no pain and misery and loved ones to enjoy. I will hold you in the light of lovingkindness and metta to ease your suffering Stephanie. When it is time for you to fly - shut your eyes and ease into that spaciousness of light and love, let it carry you over. Leave your boat (body) on the shore after you cross and be free. I know death is not our end just another beginning!

Lovingkindness to all.

picnic in the woods..very high in the mountains and thinking of you dear Rose

hugs rose. Thinking of you. 😁

Well for what ever reason am able to eat and my markers are up 77 points to 1116. We stopped Gemzar and started Vinorelbine. It's a nice short infusion and once a week. So now we wait and see if it works. It was such a short span on Gemzar and it stopped working so quickly that I am discouraged. I mean Herceptin, Doxil, Faslodex, Ibrance, Taxol, Abraxane and Gemzar have all failed in quick 9 month succession. Maybe I will be able to vote for Hillary and see out the Fall. Everyone says I look good but looks are deceiving. I know how quickly things can change. Still pulling off gallons of fluid and don't have a ton of energy. But we muddle through because that's what Mother's do.

It's like Hillary carrying on with pneumonia... how many Mothers and professional women in general (pet Mom's/ all women) go to work sick and "power" through? When you watch kids do you get a sick day?? NO you work sick or not. There is no calling out for sick days. The only time I completely fizzled was on chemo in 2007 when the kids were all home sick and I spiked a fever and crashed. My neighbor got my Z-pack from the pharmacy cause I was too wonky to drive and get it and I had to call DH home from work to watch the kids. I passed out fever and chills. Amazing it didn't land me in the hospital. I woke up a day later. Other wise I was Mom through out back pain, flu, bronchitis, stomach bugs and diarrhea... stay the course. How many men would do that? Not many. Women do it all the time. There are no sick days for stay at home Mom's and Dad's.

Do early voting so it will be one less thing you have to worry about......but stick around so we can discuss the results on the 'secret thread'