A place to talk death and dying issues
Comments
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Rosevalley and others on the thread,
We are "spinning the prayer flags" for you. Always. I just don't have the words. But I hang on your every word and FEEL it.
xo letranger
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rose - hoping today is better. Did you go to mo today? Is there a new plan? Please don't stop posting because you are worried about worrying people. Your honesty and blunt talk is good. You need to get it out and we need to support you. You are well loved here. Yes I hear ya about worrying the kids. I was hoping to go home today but wc is dropping not rising so at least another day. I so don't want to tell my dss. Ds1 been texting me from school every couple hours to see how I feel. I try to say good but staying another day does not help my credibility. Ds1 was texting me a couple times a day from school before this hospital trip. He shouldnt have to worry all the time. School supposed to give him a break from cancer and crap. He gets home in 1 hour and I am dreading telling him I am staying. Just gonna say need moreiv antibiotic. He doesn't need to know all the details.
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Aww Patty.. poor kid! They worry way more than they should. That's the part that really brings me down - the effect cancer has on your kids. (Honestly I would have left this world 2014 had it not been for my kids) Just tell your son that the med you need only comes in IVform and so you have to be in the hospital one more day to get it! Leave all the rest out! Besides your scans looked good. It's touching he wants to reach out to you. At my DD3's school they take the phones away during the day; kids are too distracted. I hope you get sprung really soon and are back home together.
So in answer to your question.. onc ditched herceptin and femara. Not working markers are up, gut is off, fluid hass increased.. all we are sure of is that I am 100% ER+. I need to make it to Jan. So she wants to try a low dose xeloda. I read the thread.. ugh.. the SE are daunting but I will be on a low dose. Insurance is pending. So I am home on disolving zofran, reglan and carafate to coat my esophagus and stomach. I am a little sick of jello. I ate a scrambled egg for lunch and it sat like a brick, good news no hunger. I showed my onc my lovely purple knee from falling on the cement.. it's a doosey. I can't believe I didn't break something considering the bone mets every where..not complaining mind you. I am still sore from that fall.
Blondie are you hanging in there? Please check in and tell us how you be. Hugs to M360, Skylotus and Hortense.
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Rosevalley, try to avoid the greasy foods. Try to steam the scrambled eggs. Mix one portion of eggs with 2 portions of water in a bowl. A pinch of salt. Then steam it for a half hour or till the eggs look like jelo.
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just stopping by to acknowledge the hard work you all are doing. I'm pretty much at a loss for words. Amazing, grace, strength, courage, anger, sadness, loveable. Those are just a few that came to mind. i will be praying and sending loving kindness vibes many moments throughout the day. Love
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rosiee am ssumkng u r takjng prilolic I asked about my liver to see what is what, regergitating. I either more prilosic strength wise.hospice gave me this book not sure if any of you are integrated
Www.bkbooks.com lit of information in end o if life dying
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Good morning Ms. BLONDIE!!
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Oops, so sorry. Wrong thread
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Blondie I have been on prilosec for years and it was increased a couple of months ago to twice a day 40mg. Now adding the other. I am fine keeping fluids down it's solid food. No worries nothing is greasy, heavy .. scrambled egg on a no sticck skillet.. cottage cheese, chicken broth, fruit smoothie. I have a egg sandwich maker for the microwave the kids love making their own breakfast sandwiches.The reglan seems to helpmove food. I went out shopping for birthday gifts and xmas and I am so beat I can't believe how tired I am. I only went a few places. No stamina. I had to get back before nigth fall because hereptin effects my vision and my eyesight at night is terrible. All the signsare blurry and the lights make everything fuzzy; it scares me. I voluntarily removed myself from night time driving - unlike many senior drivers I know. Now waiting for insurance.
I feel so sad for the many folks whose loved ones died at that holiday party. Their holiday and lives are ruined and all those folks helped handicapped persons. pitiful. Why would any US citizen need an asault weapon and mulitple rounds? Why would that every be for sale to a normal person? You can't shoot quail and ducks or target practice with an assault weapn - they are only used to kill as many people as possible in war. WTH? Why can't we just ban assault weapons country wide and make it a crime to own them. Millitary and police excempt of course. Everyone can keep their rifles and hand guns... better background checks for signs of mental illness and terrorist leanings on all sales. Personally having special needskids I would never own a weapon.. frankly I wouldn't own one period but I know many folks do and many in my family. I am so off topic... forgive me.
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Love reading your monologue, Rosevalley! You are such an amazing woman, brave, always so brave to speak out your beautiful and clear mind. Totally agree with your points. Thank you for doing it! Also, it is wonderful for you to do shopping all by yourself!
Comfort and peace to all!
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So much happening around here lately. When I've read each of your posts, I have paused to consider the intention behind the post and to hold the person in gratitude for showing up, being present for others in whatever way seems meaningful, and for allowing the impact of others' lives to be felt. Even when we struggle for the "right words," we might want to remember that we are showing up for each other and staying connected in ways that are supportive and real. That's what's most important. I remember long ago someone teaching me a lesson about assuming that any particular person's intentions are good and kind unless we have evidence to the contrary. Even if I disagree with something someone says, I value their words when they are heartfelt and genuine. And honestly, even if someone (whether it's you, Rose, or anyone else) who shares something that is true about their own experiences or values or beliefs or whatever and it happens to cause others distress, that's no reason to stop posting. Don't we need to be here for each other through the rawness, the struggles, the hard-won overcoming of any number of obstacles, the moments of joy and connection to whatever is most important, the desire to let go, the gathering together of our wits, and all the aspects of living with advanced disease?
I think it's been about 12 days since I posted here, but this thread is meaningful to me on a daily basis. Not having energy, having pain, having too many medical appointments, and having regular ole life stressors have put me in a state of overload lately, but I am enduring. I regret that I don't have the opportunity to post more, but I also realize that my voice is not critical to this conversation. All of us, together, sharing, in whatever ways we can muster, make this space worthwhile. Holding hope for getting what we need as often as we can and in lovingkindness, always.
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rose. - happy you got to go shopping. Yea !
Blondie - thinking of you
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My DD daughter is 22 and developmentally a 7 year year old. Her birthday is Saturday and she is so excited she could bust a gut. We get texts and video calls several a day. I looked at what I had gotten for her for gifts and it wasn't enough. So cancer or not motivation over ruled.. out the door. Kids first. DH has taken so much time off he can't shop and if he did, I can't imagine what he would come home with. He does most of the cleaning. I am wiped but more concerned about the ever smaller amounts of food I am able to pass. The reglan has given me loose stools and am surprised there is anything in my intestines I have eaten little. DD wants a pizza lunch at a restuarant.. I will sit and celebrate but there isn't any chance I can eat any of it. Liquids are still going down.. yay. Clearly what ever is growing is in my stomach/esophagus and intends to shut it off. No plans on scoping or looking.. just waiting for xeloda and hoping to avoid IV fluid. The good thing is no gut pain or hunger just relentless fullness and heartburn pain. I need to get 2 more things and mail a package then that's it. I am soo grateful to feel well enough to get these things done. I wonder how xeloda could possibly work fast enough before things close. I am now starting to see closure in a way I didn't before. If I can't drink this is a real problem.
I watched the chickadees and nut hatches at our feeder this morning. They swoop down in cascading arches of turn taking... it's so fun to watch. We have a mature and super dense laurel hedge that provides habitat for the little birds and they spend lots of time in there, protected from wind and hawks, owls and cats. Anyway they love the seeds and grab one and take off to eat... I spend hours watching them.
Brenda I am always glad to read your posts. You should have been a teacher. Maybe you were or maybe it's a second calling. I always wanted to be an artist... illustrator. Drawing is a hobby. I hope you start to feel better. I have been at the doctors weekly. Patty you sound good, the antibiotics must be working. I have a bottle of Ibrance unopened, sealed. I tried to give it back at MO's but of course they won't take it. Nearly 9500$ and I can't give it away. Only in America. The tech at oncologists said to donate it to a mission group and they could use it, no idea how to do that. Hugs Blondie.
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rose - kids 1st indeed. I am amazed at your inner strength. You rock ! I hope her bday is awesome and that you feel well enough to enjoy it. I used to laugh at my mom for bird watching. Called her old lady jokingly. Now I love to watch them. Got several feeders outside my screen porch so I can sit in my rocker or swing and watch them. I don't have any idea of what kind they are. Except for the hummingbirds. Only got 1 hummingbird feeder and they'll fight for it. Need to get another. Hesitant to buy anything new for myself. Afraid I won't get to use it before I die. Can you take the Ibrance to the mo office ? I know before I got my prescription insurance, they gave me a lot free medicine that other people either didn't need or have died and of course didnt. need. I have donated a lot of my medicines when i change the dosage. Hope you don't wipe yourself out today.
Blondie thinking of you.
Hello all
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For what it's worth, I have decided to simply relax and live peacefully day to day. I am not going to get flustered about Christmas or any other holiday. I sat back and let my family run Thanksgiving and it was lovely. I couldn't join them for long and could hardly eat a bite, but the table looked gorgeous and the food could have graced the cover of any magazine. I was so prould of what my husband and grown kids accomplished without my help. They will be just fine without me.
I simply am too tired nowadays. The least effort exhausts me, even checking in here occassionally. Resting leaves me happy and content. Holidays, shouldn't be all about decorations, food and presents - much fun as those are, they should be about our relationships with each other.
Dying is a lot of work. I hadn't understood that before. Managing medications, figuring out what works and what doesn't, deciding what needs to be done differently each day, plus seeing nurses and constantly answering questions from them and from my family is surprisingly tiring. I've lost 25 pounds and am quite skinny. My clothes hang off of me. That doesn't bother me, but it does upset my family as it makes my fading away so evident and my approaching death very real.
I have no idea how long I still have and my hospice nurses say they don't either, other than I have begun declining. I have been told that each person is different and that there is no way to know if I am near the point that I will start actively declining, or not. So, I am going to do my best to rest, nap and enjoy what I can each day. That is what is important to me, not fussing over holiday details. I will leave that to the living. Now is my time to be selfish and take care of myself. That way I can do my best to take care of my loved ones emotionally.
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Hortense, so very glad to see you posting! It's a relief to learn that you are basically comfortable if you rest and relax. So currently and recently four of you who are in the toughest situation, Blondie, Rosevalley, Hortens, and M360, have checked in with updates and been more or less rather stable, although with a little declination. Only Skylotus has not been heard from for a while. I am wondering how she is doing. So very much hope she is hanging in there well. You are all in my thoughts. I am holding huge respect for you all who are going through this phase with calmness, mindfulness, wisdom, generosity, and grace. Thanks for talking to us! Comfort and peace to all.
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Sky WHERE R U
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Hi Blondie, Hi Lovely Ladies,
I'm here. I'm still alive, as hard as that is to believe sometimes. I found a 3" memory foam pad for my hospital bed, on Amazon. Big relief. Now, if only I could get comfortable enough in some position to write. I can only manage the wheelchair for about 20 min at a time. Now down to about once every 3 days. I'm watching my muscles atrophy like crazy. I live my life in a hospital bed now and my daughter is doing the best that she can in taking care of me. Hospice comes in once a week to adjust meds, pain and nausea. They come in twice a week for "sponge bathing." I still use a commode, which is one step from the bed. I don't dare venture further. Oh, how I wish I could just get up and walk. But, being the "empath" that I am, I think of people in other lands who have it much, much worse and try not to complain.
I had my oldest daughter bring over boxes (2) of old letters to go through. If I can figure out a position on this bed, maybe I'll get to them, otherwise, I'm just hangin in there, day by day, spending quality time with my youngest daughter. Watching my oldest daughter struggle a bit more with all of this. It's hard on them too. It's hard on all of us. But, we figure it out moment by moment. We all have our burdens or loads in life, whether they come in a hand gardening shovel or a dump truck!
Namaste, T
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hi sky. Glad you're still here. Do your girls know how to access any of your blog, caring bridge or bc.org accounts?
You've been so brave in sharing your journey. We will want to share with your daughters when it comes that time.
Hugs.
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Skylotus, very glad to hear from you! Looking forward to celebrate your birthday in 17 days!
Rosevalley, Blondie, Hortense, M360, comfort and peace!
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Well there isn't much comfort. Today so sucks. I drained which usually brings relief.. still bloated and distended, reflux is hideous... head ache for 2 days now. We are having a series of big weather systems and HUGE amounts of water 2.5 inches yesterday and 6 inches since Dec 1. It broke records yesterday in Portland. Biblical rainfall, flooded streets. Pouring now. Anyway big weather systems give me headaches from hell. So between the head ache and belly issues i have slept most of 2 days.
I called the specialty pharmacy to see if the order came through from last week. No record yet. Left a message at onc office. No reply. Oncologist is at a huge cancer conference in Texas. Insurance must be digging in. What a joke.. so the cancer has a Christmas gift of unchecked free spread ho ho go. I ate a small baked potoe for lunch and it feels so horrid. Took reglan waiting for that to kick in. What was I thinking?? Made more jello. I had jello for dinneryesterday. Jello is good. Everything else is evil.
We did have a very good Bday with DD1! Luckily the place she picked for pizza was closed and we went to a Vietnamese restaurant and had Pho. Very soft slippery vegetables and broth, that I could eat. (DD1 was adopted from Vietnam when she was 11 months old and she has always loved Asian food. She would eat seaweed and spicy fish as a toddler. Must be genetic. ) DD1 was tickled with everything and there was an ARC Christmas dance that night. Everybody from her foster home dressed up and went and danced away and met Santa. Apparently she had a blast.
I have to tell a funny story. We used to go and help the young children's ARC holiday party every year.. My DH is tall 6ft 3 with blue eyes and a short white beard and white eyebrows. He played the "signing Santa" in his suit with lots of pillows... he's skinny. I did face painting for hours on gobs of kids... non stop. Our other kids helped with crafts. Anyway the first time we did "Santa" we didn't tell DD1. So Dad disappears dons the costume and comes out on stage waves, music, meets all the kiddos one by one. Asks them what they want in ASL, English or bad Spanish (haha). DD1 sits on Santas lap, signs away what she wishes for and we have pictures. Later she tells Dad who returns back in regular attire. "Daddy You missed Santa! Santa was here!!"... all excited! We just busted a gut laughing.. we asked her did she notice anything unusual about Santa?? "Nope!" Every time I see those pictures it just makes me crack up. It was a very good Santa costume, huge flowing white beard & lots of pillows! Years later she learned Dad was Santa, then we had to keep her from telling the little kids it was her Dad! I miss those days. That ARC holiday party and doing gingerbread houses at the elementary school with my other kids classes... yep best holiday memories.
I hope I can pull it together. One more birthday and xmas. DH bought concert tickets to a Christmas music show in Portland. Fingers crossed I feel well enough to go. It sounds great. This head ache and fatigue...belly oy. Too bad we can't ask for a new body for xmas - even a rental.
Skylotus so glad your mattress topper gave relief and those daughters are by your side. Hortense glad to see you post. It's a huge relief to know kids are independent and thriving. I am glad you are together with your family out in the country. If my youngest wasn't 14, this entire thing wouldn't be nearly so upsetting. Hugs Blondie! Hugs to everyone.
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Saw the flood in Oregon on TV this evening. Very sorry for your discomfort severed by the weather. But love your post, Rosevalley! So calm, fluent, and full of love and interest, as if nothing is terribly wrong (although the narrative is actually about cancer, about leaving the world due to cancer), as if everything could be beautiful by treating them with aesthetic appreciation and reflective attention. Tell us more about your children. I found them fascinating. Or, rather, I found you and your family fascinating! It's not yet long enough for me to know a lot about them. Is that your DD1 has a kind of disability from birth and for that you and your husband adopted her? And your DD 2 has hearing problem from birth, for that you adopted her. Is your third DD your own?
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xavo- Our first child we adopted and had no idea she was deaf or disabled; she was just a very cute baby. Turns out she was a rubella baby and would have been born perfect except for a 15$ vaccine. All we knew is she had a heart condition which they repaired, other issues are all from rubella. Second daughter is our own surprise baby. She is away at college and she can hear. Our last daughter was adopted and we knew she was deaf since she was 4 when she came here. We found her on a deaf adoption web site and thought she was the saddest little kid I ever saw. I have always felt badly to have brought her here and gotten cancer when she was just 6. Her whole life all she has known is me sick. They are all good kids.. wildly different in personality and interests. They all sign.
Funny we tried to adopt in the US and lived in CA back in 93 they would not place inter racial kids with a white couple. If the adopted child was black and white for instance one of the adoptive parents had to be black. California has since changed the laws. So we waited years.. every kid we were interested in we were denied. We said we would take any race any disability, nothing terminal, age 0-4, male or female. I also refused to do foster adopt.. you place a kid they stay, none of this "trial and yank" business. I can't give back a kitten much less a kid. So finally after waiting, we went over seas to Vietnam. Then we tried again to adopt in Oregon and got all the way to "committee" and then found out all kinds of things in a closed file. We were so upset about the lack of exposure and transparency we went over seas again. Life is an adventure. That's our story... nothing to do with dying of cancer.
Sometimes I wonder if the cancer isn't in my brain.. my mind flits and I just ramble.. la la la.. off topic. Sorry. My cat is on my lap and has fallen so sound asleep he has "melted" off my lap with his forehead against the bed! Ha ha.. pretty funny. He's really old 15. night all. peace.
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I think we all have chemo brain when we are tired or stressed. Don't think it's in your brain but we all go there. It's frustrating because we used to be whizzes at multi tasking.
We fostered one and adopted another privately/locally. Both moms were users but neither was born addicted. Don't know what, if any, long term implications are.
I often wonder too about why my kids "lost" their birth mom and now will lose me. Life isn't fair. They are my pride and joy.
I believe I fight harder because of them. They are learning compassion at a very young age. Maybe one will grow up and find the cure. I do know that no matter what, as hard as it is to live with cancer, they have a better life.
I feel your pain.
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thank you for sharing your lovely family histories. What beautiful examples of unconditional parental love.
I visit this thread often, being stage IV and mother of an only child of only 4. I worry about him as he has no siblings. I pray that if I am taken from him at a young age, he will remember me and remember how deep my love Is for him
Xo letranger
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Zills- it isn't fair. I am glad you understand and love your kids. I have had people ask me if I love my adopted kids as much as my biological daughter. Yes. But my love is realistic... I never tell DD1 and DD3 they look exactly like their Dad since we don't know. DD2 is the spitting image of her father... well prettier and no beard! Haha But I remember when our first daughter was 2 1/2 and in an early intervention preschool for deaf. I had our middle daughter in a baby carrier and turned around to shut the gate at the school. The 2 1/2 year old bolted into the street when she saw our car. I dropped the baby in the carrier and ran into the street to grab her hair and yanked her backwards.. our momentum nearly threw us into an oncoming van. I felt the breeze of the van as I held my crying child. She came within seconds of being smashed. That entire episode scared me to death. The baby in the carrier was howling on the sidewalk. Luckily everyone was fine... but it just goes to show you will do anything to protect "your" kids - a second to decide... how they landed in your care doesn't matter. The first time that baby reaches for you and you bond with him or her... it's a matter of "heart" and transcends everything else. I tried to explain that to someone who was doubtful but if you can't imagine it, it is too hard to understand.
We give our children roots and wings. Then we hope they fly! Fill them full of love to fuel the journey. I am sure our kids "know" we love them and hopefully how much. I know I would have left years ago had it not been for my kids. What I will endure is greater because of them.
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I want to thank all you ladies for the Birthday wishes, my Birthday was everything I dreamt it would be and more.
Doing anything like getting out of bed and sitting up all day in my living room is too much at times. I had chemo last week (I'm still on a clinical trial) and the six week scans on Friday. What is wonderful is that this trial has kept any new tumors from growing, and the ones I have in lungs, liver, kidneys, stomach, bones have stayed the same no growth at all. If I wasn't on this trial they would probably not do ay new scans?
So another month of stable mable which I'm happy with.
Hope in the coming weeks all of you have less pain and more happiness and love all around.
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Rosevalley, I saw you deleted your two posts accounting your children. Luckily you did it after I read them (did not get chance to respond yesterday)! I would assume you want to keep that rather private for their sake and I totally understand. I still want to respond a bit. I want you to know that I admire your whole grab of life. I think you have been leading a rich, full, creative, and beautiful life with your husband and children. In contrast, my life is very different. I spent many years to pursue an academic career, which resulted in having no children. I regret. I never had a cat, nor a dog. I do very much love children and animals. I raised two little baby rabbits and two baby chickens when I was small, so I know the love. I am always very found my neighbors' children wherever I live. I admit that is completely different from the love felt by the parents. Anyway, I just want to tell you my appreciation. It's too bad that such a beautiful life has to be interrupted!
Zills, you too, I admire you. Hope you do very well!
M360, very glad to see your post! It's great news that you are stable at the current level. Hope it will get even better, to achieve regression!
Slylotus, Blondie, Hortense, hope you all hang in there well!
Happy Holiday season to all!
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I hope this recipe could help you, Rosevalley, and anyone who would like to take jello like foods for nutrition （easy to prepare; avocados are very good for liver; I used it for fancier meals, delirious! could be served cold or warm):
Avocado & cucumber soup (serving for 4)
(components: 1 small red onion (cut into very fine crosswise slices); 1 large English cucumber (unpeeled, cut into 1/4 inch thick slices); 2 large avocados (pitted, peeled, and chopped); 1/3 cup shallots (chopped); 2 table spoon olive oil; 3 cups chicken or vegetable stock; 1/4 cup lemon juice)
Preparation:
1) Pickle the small onion: , mix the red onion slices with white vinegar, honey, and salt; let stand while preparing soup (note the pickled onion will be served raw on top of the soup. If raw onion can't be digested, this can be saved)
2) Heat olive oil in a large enough pot, put in the chopped shallots to saute; when the shallots became translucent (3 minutes), add the sliced English cucumber and stir and mix (1 minute); add the stock; bring to a boil; reduce to simmer till the cucumber is tender (15-20 minutes); add the chopped avocados, stir and combine (1 minute or less); remove the pot from the heat
3) Put the soup into a blender to puree; then put the pureed soup back to the pot and heat it; when it started to simmer, stir in the lemon juice with salt and black pepper to taste (if cold soup is desired, the heating is not necessary)
4) Divide soup among serving bowls, top with the pickled onion
Just hope it helps!
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Just noticed that Rosevalley has deleted all her recent posts, not just the two I mentioned above. I am having a bad feeling. I am very concerned! I just hope I am wrong...
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