A place to talk death and dying issues
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Rose, I'm glad you went to the ER and the fluids are helping. My heart goes out to you as my youngest DD just turned 14 last month. My other two are 21 and 18 and it is unfair they had me until adulthood and she may not. She is the one I worry about the most and why my heart breaks. She cries too and begs me not to leave her. It kills you doesn't it? I do know though that her dad and sisters will get her through this and she will remember me as being strong and courageous. She will be ok and have a wonderful, happy life, and yours will too. Have faith. I hope for your continued comfort and peace. Prayers were sent up for you this morning and will continue. Gentle hugs, be at peace, and rest comfortably.
- Barb
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Rose, I am praying for you and your family and hoping that you can find some relief from the pain you are experiencing. You daughter is scared for you and wants to have you close to her, just as you want to be close to her and the rest of your family. It sounds like you are getting good care at the hospital. I hope that they find a way to keep you comfortable when you return home.
You remain in my thoughts.
Lynne
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Oh Rose, I can't believe you're comforting me, easing my worry about your situation. From one perspective you are in dire straits - run-away cancer and disease symptoms. And from another, you have better medical back-up than I imagined. It's so difficult for me to understand the bigger picture of your life even with your wonderful, descriptive posts.
Thank you, Rose.
Thank you for seeking the best care for yourself, caring about your family's needs (may you just make Christmas (only 11 days now)), caring about your bc.org community by staying connected.
btw, I too refused hospice at my first intake interview in September. I've been living with advanced breast cancer for over 20 years and just didn't feel I could make the shift from self-directed care to their model and the insurance/Medicare limits. Then things changed for me and hospice is now more a help than hinderance.
One thing they said to me is, "you're driving the bus." When they were calling and wanting to come often, I felt like turning around and saying, "then please stop backseat driving." But they know the dying territory better than I, so I've invited them to sit next to me as treasured navigators who know the terrain, if not my route.
Sending much metta, loving kindness, dear Rosevalley, Stephanie
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Rosevalley, I can't Thank You enough for showing me the way to peace and comfort on our journey to find our wings. Your grace and insight has calmed my fears on my way to the unknown. You are living each day remembering what is really important in our earthly place. You look past your discomfort and think of your family first, your loving friends at BCO are counted as family. I hope you get that Christmas wish, to celebrate with your dear beloved family. Go after the best care, and find comfort in their loving helping hands. Find peace knowing that you have raised your children to know love, and they will take care of each other in your spirit. Have a very Blessed Christmas. Cheryl
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in your corner Rose
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Rosevalley,
Your voice is as strong and vibrant as ever, despite all that you're going through. Please know that you are in my thoughts, and I hope that your Christmas is filled with the comfort and love of your family. The downside of this rotten disease is pretty obvious, but the gifts we give each other here, all year long, are immeasurable. You have certainly demonstrated that! With love to you and yours…
Rose.
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Dear Rosevalley - it sounds a bit weird but I am glad you're in the hospital - it seems to have relieved your mind somewhat and that is a good thing. I am thinking good thoughts that you get home for Christmas with your family - you are NOT a holiday buster. Sending hugs, S.
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Dear Rosevalley,
As mostly a lurker since being diagnosed Stage IV in January 2015, there are a few of you whose posts have really made a huge difference in helping me deal with this awful disease. Your posts are so honest and real and graceful and strong and have meant so much to me. Thank you.
I particularly loved your posts about trees. I try to walk everyday with my dog to an area of redwoods and I just stand there and marvel at their grace and beauty and strength. I wish you a holiday of comfort and peace. You and your family are in my thoughts and prayers.
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Following this thread and happy to learn you're getting some relief, Rose.
Tina
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So much caring and insight shared around here...what a comfort, even when our perspectives differ! Letanger, thanks for sharing the Jack London quote--it inspires me.
Rose, your statement about gratefulness somehow reminded me of Grace and Grit, the story of how Treya Killam Wilber lived with advanced cancer and died. I read that book years ago when I was trying to understand ways of living and dying with cancer. There was some controversy surrounding the book (including how it was published after her death, in large part using the diaries she had kept), but I was struck most by how she carved out her own way of genuinely experiencing cancer, from initial diagnosis through ups and downs, then decline and suffering, then death, while remaining grateful for all that was good in her life. Around that time I also read what I considered to be a condescending essay written by an oncologist about his respect for clients who dealt with cancer "with grace," which in his terms meant not being angry or outwardly showing volatility or intense emotions, "surrendering" (not accepting), being mindful first and foremost of others' needs in letting go of life, not being "difficult," etc.--in essence, making it "easy" for the doctor, caregivers, loved ones etc. to face the loss of that particular person. I was struck with how Treya Killam Wilber defined for herself what it meant to experience grace, grit/endurance, and gratitude; she did not allow any MDs or others to define it for her. (That's not to say she was not influenced by those who loved her and whom she loved.)
All that rambling around to say, in facing the challenges of living with life limiting illnesses through ups and downs, I've tried to learn how best to walk my own road. It's one of the reasons I like the Antonio Marchado quote; "... wanderer, there is no road, the road is made by walking. By walking one makes the road, and upon glancing behind one sees the path that never will be trod again." Each of us is unique, and we all allow or refuse to allow others to join us from time to time as we walk the road that is singularly our own. We may do so with grace, grit, and/or gratitude, or we may not. I think it's most important that we walk the road that is most meaningful to us and allows us the fullest expression of our values, what makes us who we are. But that can be so HARD--not just in the walking, but also in having faith in ourselves to build the path as we go and not get lost when we face crossroads or detours or barriers or get overwhelmed when we cannot see (or sometimes even when we see) what is around the next bend.
Although it can be a cliché when certain (less than genuine) people say it, I consider it a privilege to share the roads that you all are walking and to share the road I am walking with you. Holding you all in hope for peace, finding your own way while staying connected to those you trust, comfort, and, as always, lovingkindness.
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Keesmn- our kids are almost the same age..wow. It's hard. My DD1 gave me the sweetest poster she drew it all out. Wish I had a phone i woud send you a picture. DD2 gave me axmas ornament she picked out of a snowman hugging a littleone (Mom and daughter perhaps?).DD3 stayed a lovely long time yesterday to visit. Today some friends stopped by with flowers and well wishes again a nice visit. Sweet to have them take the time. Things seem to be improving. So there is hope to leave be home for birthday and xmas. HopeOnc is right... no puking tomorrow morning. Maybe I can handle home???
There is a mediation room that is particularly warm and has a lovely view of the surrounding neighborhood of small bungalows ll decorated with lights. I like to go sit there.
(((hugs))) To all those on the path..here on theboards, around the world and everyone here on this cancer ward.
Thank you all for your well wishes and insight i am grateful! love rosevalley
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Good night, Rosevalley!
Good night, all!
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Rose - I'm so happy to read you went to ER and starting to feel better. You give me so much insight and food for thought. In fact all of you gals inspire me.
Anybody heard from Blondie? I pm'd her and she hasn't replied which is unusual for her.
2 weeks ago I had a anaphylactic shock from iodine contrast for a CT scan. I remember telling the doc I'm going to die and was well on my way there , 3 shots of epinephrine at 5 min interval and then code blue was called and was wheeled in ER trauma. Simply could not breathe and must have passed out because a lot of things I don't remember. But I remember saying to myself, I can't go just like that without saying goodbye and seeing my loved ones, this is absurd.
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Please excuse the intrusion.
Blondie called me this morning and she said I could pass along that she was having a difficult week.
In true Blondie fashion, she doesn't want anyone to worry about her.
Much love to all here.
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Thank you Slowdeepbreath, sorry to hear Blondie is having a hard time. If you speak to her again, please say hello for me.
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They just let me take a warm wonderful shower after 4 days... it was practically a religious experience.
wow... clean.. no puky smell, no saran wrap gummy hair.. clean gown.. even chlorihexidine wipes. A warm shower is highly under rated. It's wonderful. Doing better...feeling a little better. More sleep would be great, but hey it is a hospital and ya'll know how that goes. Blondie- Hugs and more hugs your way. Prayers for peace and comfort. I am sad to hear you are having a hard time and I will hold you in the light of lovingkindness. I hope our collective love makes you feel comforted.
Sending out lovingkindness to Hortense and Sky and M360.. ((((Hugs)))
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Oh Linda, I am so sorry. Are you ok now? Do they think it was because of multiple CT use of the iodine? Will they pretreat in the future or are you just now so allergic no more CT scans. I know that was so scary
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Beatmon, I'm fine. It took me a good 10 days to feel like myself again. They have no explanation other than allergies can pop up anytime without any warning. Never had any problems for 2 years almost every 3 months and then bang. No more iodine for me, they will not take the risk again even with anti-allergy prep. I see my Onc on the 21st and will discuss what future imaging she has in store for me.
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Beppy, thanks, I came here to let everyone here know, too. Thank you!
Brenda True, I always love to read what you have written, but boy! That oncologist's essay? Yuck. I would love to read it, if you can ever find it. I am definitely going to read Grace and Grit, if I can find it.
RoseValley, I am so glad you are feeling better.
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Linda, sorry you had that experience. I'm allergic too. I do prep....still uncomfortable. I make sure someone is with me when I do contrast. Insurance won't pay for a different test. I go Thursday for another test. Hubby going with. My stomach is bloating up and can't go to bathroom anymore without laxatives. Gotta find out what's up. My daughter is crying a lot too these days. 24 and pregnant. She wants me here forever, like all our children and loved ones do. But we have had good conversations, and she knows she will be ok when I'm gone. Such a tough ride, but so much beauty still in life. :
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Linda- I didn't even see that you had had that awful experience with the contrast.. wow scary. I am so sorry. I am in la la land and not paying attention. Wonderful you pulled through and are doing better.
Susan - I hear you and hope it isn't ascites. But if it is, it's doable and manageable. We have to get you to see that grand baby born.
My brother sent me an email that made me burst into tears. This is my sane brother who takes care of my Mother (dementia/diabetes) and other brother (mentally ill dependent). Basically it said I will miss you so much; who will I have to talk to when you're gone. It's just us and after i leave he's alone. Really alone.I feel so bad. He's a big (6ft 3) tough opinionated guy who never wears emotions other than anger and opinions, and to hear him say he would miss me just does me in.
I have spoken with my Onc who wants to try Doxil to slow the cancer in my gut. I am worried about the side effects since I had a very hard time with adramycin and cytoxin.. felt like crap and like I got hit by a bus. I swore I wouldn't touch adriamycin/doxirubicin again but I want to make it to see Christmas and my DD2's birthday Sunday. I don't care if I can eat or what ever. As long as i can drink and be hydrated. I just want to be upright, able to participate, awake..not sick. Sigh.. I am worried if I don't do something to slow this down I will have a total blockage rather than the partial and then it's puke fest and IV's... down the drain. There goes Christmas and all. The doxil is longer acting and I assume will not be at the strength used when you are not doing palliation. I am so torn... do I try and coast to January 1st? So far I have kept everything down for a day. They might let me go home. I am so torn... Christmas break means so much to my kids who are home from school. I can't believe I am considering this.. desperation I guess. If I take the doxil... I might be sick at Christmas 10 days from now... if I don't my blockage becomes total and I am back here. Poopy options.
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Rosevalley, do the doxil, please. I know from reading that doxil is quite tolerable. A/C combo is one of the most miserable chemo drugs, they all say. I have this impression, might be wrong, that there are quite many opinions you have not yet considered. It seems that you are still rather physically strong. Otherwise, your onc probably would not suggest any chemo. I hope someone who knows doxil better would check in soon to give you a better idea. Also, why you were not allowed to take the warm showers before, forgive my ignorance?
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Rosie, I pm'd you about doxil. Def not like the ones you were on. Also I never felt bad on any of them 10 days later except the taxol yuck yuck group. At worst I am in bed for 3 to 4 days then back on my feet.
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Rosevalley, that shower must have been absolute heaven. So glad that you're feeling better. I was on Doxil from June-October this year. I tolerated it well, despite some hand/foot problems and a bad skin rash. But the pre-meds were excellent, so very little nausea. Really, truly not horrible. And the infusions are spread out... every three weeks… yay! AND it slowed my cancer down. Of course everyone's different, but I wanted you to know my experience. Wishing you the very best, as always.
((((Linda)))) You've been through so much lately, you certainly didn't need that. Very glad you came out the other side. Oh, what we endure. Happy, Peaceful Holidays to you.
Thinking of Blondie, Hortense, Skylotus, and all those who find themselves struggling. You are all in my prayers.
Rose.
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Susan, I can relate to you being uncomfortable! May I ask if your reaction was severe? I was told they would never take the risk again. But if there's adequate "antidote", I'd like to know. Good luck on your scan.
Rose, tough decision, but whatever you decide will be the right decision. Follow your heart and intuition. You're not in la la land, focus and on you and your family. You're awesome girl.
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Linda, yeah it was severe. I have someone go with me because i don't want to die in the hospital by myself....I don't mean that to be sad. Just makes me less nervous. I actually asked my allergist, how many times can I go through this before the pretreatment doesn't work. There are actually no studies on that. Said I would volunteer for a study....any money in that??. Nope, they aren't interested in a study I guess...go figur
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Thanks Susan. Hum, not sure I feel like trying it again. I understand that you want someone with you. I was alone thinking it was just going to be a regular scan but I wish someone had been with me. It was a frightening and lonely experience.
Steelrose - thank you for your kind words. Happy, peaceful holidays to you too and everybody on this thread.
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Yikes Linda - one of my drs. was trained under a dr. who says "any person, anything anytime" re allergies and that is so true. There are other ways to scan probably more costly but too bad - glad you came out of it o.k. but you must have been very frightened.
Rosevalley - that shower sounded awesome - hope you're going to try the Doxil - I've not had it but it sounds like it might be a good thing to save your Christmas with the kids - keeping everything crossed that you get home soon.
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Rose, I am so happy you are feeling better. Have they considered surgery to remove some of the cancer in your stomach and possibly give you a colostomy bag in order to help prevent more blockages? If you haven't discussed this option, it may be worth trying. Please know that you will be around for the holidays. Never doubt it or say to yourself or others that you won't. Believe that you are sticking around and you will. The power of positive talk works wonders. Keep fighting. My prayers are with you.
To everyone on this board, it is such a Godsend to have the love and support from women going through the same thing you are. Prayers for all of you are part of my daily prayers.
Barb
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I am home! Managed to keep what Ihave attempted to eat down... used zofran. Tried to go out and get xmas paper.. one stop and I was so beat and woozey I had to come right home. Stupid.. but I got it in my head to wrap gifts and not enough paper and I wanted a card for my Mom. I am crazy. I figured I could walk around the floor at the hospital, trying to get my gut to move, so why not shopping.Hope springs eternal, good thing my DH wasn't here. I am having to drain every day orthe nausea just kills me. DH got some of that clear boost with protein and it's peach flavored. It's pretty good very filling.
Keesmom- I spoke with a surgeon who said there was nothing they could do. Lobular cancer doesn't grow in one lump tumor fashion, it grows in sheets, long thin ribbons of cancer. This has attached itself to my bowels and has thickened the walls in spots, causing motility issues and distension. There was so much thickening on the omentum that the tech doing the echo couldn't see through it on the right. It's up around my stomach, gut duodenum etc. If they started cutting.. where would it end and it's every where. Plus there is the issue of all the ascites... if they cut me open.. shoot I would leak all over. Surgery wouldn't work as there are not just a few spots to cut out, it's infiltrated everything.
I go to the oncologist tomorrow. As long as I don't do anything to lose the pleurx cath and my ability to drain off this fluid that plagues me (I took off 600 yesterday and 750 today and felt soo much better.) When I fill up the nausea just is constant. I might try the doxil if she thinks it will get me through the next 2 weeks keeping my gut from shutting down entirely. Not that she can tell these things, its an educated guess or if doxil would even work that fast. I need to be mindful of the precarious situation I am in. Wish there was a "PAUSE" button I could push that would hold the cancer at bay for 2 weeks. Sorry to blast you with all the particulars..
Thank you for your encouragement. Blondie I am praying for your comfort and peace. Hugs and love to M360, Skylotus, Hortense and all who need it. Good night.
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