A place to talk death and dying issues
Comments
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Hello. I am newly diagnosed with a malignant pleural effusion. After reading through some of these posts I see that some of you have had issues with this as well. Additonally, I have a spot next to my heart that could be causing the shortness of breath as well. Anyway, I was just diagnosed 6/22 with a recurrence and I am already having my second thoracentesis in a few hours. I am so sick of not being able to breathe and.....(warning TMI) peeing on myself from coughing like crazy. Hope to get to know you all.
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Hopeful34- Welcome and don't worry about TMI's! When my belly's full of fluid any sudden coughing fit or violent sneeze and off to the bathroom... hey the pressure on the bladder of 8+ pounds of fluid is a lot! Makes you feel like you have to go and everything is tight. Hope that thoracentesis helps you breathe better. Once my onc's off opens I will be on the phone asking for another paracentesis.
Hi Calico- you have finished #7 already. How many altogether? Sounds like the major side effect is fatigue. Can you move your arm any better, have the treatments made any difference? I hope so. Stay cool. (((hugs)))
Blondie- saw on another site you are having issues with nausea.. could it be pain meds? You leave for Florida on Wednesday! Get it taken care of quick. Hope you feel better. We are all excited about your trip. Be well as you are able.
(((Hugs))) and warm wishes to any who might need some.
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Hi, (((Hopeful))), nice to meet you, even under these circumstances. I know you'll get a lot of support here.
Hey, Rosevally, I get a total of 10 WBR, so after today I'll have 3 to go. I'm sorry to say I've noticed no improvement in my left arm/hand numbness/weakness. My biggest fear was it was then heading into paralysis or pain and neither of those have happened, at least not yet. It may be that the nerve root has cancer, and I don't know that anything but chemo would address that, but will ask onc today. So glad you are getting relief from the draining!
Blondie, getting so excited about your trip!!!
xoxoooooxox
Calico
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Calico- Beppy sent me a PM that Wilsie passed on in April of this year. She was so sweet. Just Judie passed on Saturday. I guess the ascites forum will be short lived.
Glad the WBR is not knocking you over. It seems fatigue is the constant battle. I go in tomorrow and get more fluid off.. hopefully 2-3 liters at least.. eating makes me puky. There is a fire on the other side of the Lake up near our cabin it's 70 acres and only 15% contained. The forest is so lovely up there. They have folks 24 hours on the line and are using choppers to fill up at the dam and dump on the steep hillside. This hot weather just won't let up. Poor trees and wildlife.
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Oh Geez - I can't believe that Wilsie and Just Judie have passed - I thought I had just read a Wilsie post - time gets away from me sometimes - two great ladies. I don't post often on here but lurk to keep track of you all and see how everyone is doing. I am just struggling along on Faslodex and trying to figure out the se's that my onc insists just "aren't that bad" - the weakness and bone pain keep me on the couch for two weeks out of every month which, I guess, isn't as bad as it could be but it has taken my active life down to a crawl.
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Sandy, take solace in the fact that at some point you will tell the onc to go fuck himself.0 -
"Sandy, take solace in the fact that at some point you will tell the onc to go fuck himself."Yes. Yes indeed. Well said!
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In the midst of reaching out to others, do you ever think, "Words fail"? Honestly, I've been sitting here for quite a while trying to gather the "right" words to share my thoughts and feelings regarding all the experiences that you all have been sharing over the past week or so. Sometimes the sorrow over the difficulties that others face is so intense, it's hard to hold it.
Rosevalley, so sorry to hear about your reports, the ascites, the need for paracentesis. I know you have been angry over not getting the Ibrance, and I imagine hearing this news compounded a whole host of difficult feelings. I truly hope you will be able to stay comfortable. Ascites can be such a bugger; is it possible for you to have a PleurX drain placed so that repeated withdrawal of fluid can be more easily managed?
Calico, 7 down, 3 to go. Hope you continue the WBR without significant SEs and that your body is doing all it can to promote the benefit of WBR when you are sleeping. I know it's so aggravating to try to make sense of what is happening with your body, including your left arm/hand, and I hope you got some answers from your onc today.
M360, vent when you need to do so, and don't worry about complaining; everybody needs an outlet. Hope you get some answers about your abdominal fluid and how you can get some relief.
hopeful 34, sorry to hear about your recent progression and having to deal with thoracentesis again. Hope you managed that procedure without too much distress. Difficulty breathing can be anxiety producing. Do you have anxiety, and if so, any meds or others strategies for handling?
Dunesleeper, I am sorry to hear your news of progression as well. How are you managing the emotional impact? If I recall correctly, you mentioned before about fears related to dying and wondering what the dying process would be like. Have you found any ease in those areas? I'm still in the process of writing my obituary, and I have a few resources. Here is one of them: http://connect.legacy.com/inspire/how-to-write-an-obituary-or
Blondie, Hope you are getting that nausea under best possible control. In case you haven't noticed, there are quite a few people who are very excited about your upcoming trip to Florida--of course, nowhere as excited as you, but you get my meaning, I'm sure. I hope you will have an absolutely wonderful time.
The(always fabulous)DivineMrsM, thanks so much for sharing your insight here. I appreciate your words wherever I see them. You have a generous heart and a very thought provoking perspective on so many issues.
I've been thinking about suffering lately and particularly a quote from Ram Dass: "...And to have finally dealt with suffering, you have to consume it into yourself. Which means you have to–with eyes open–be able to keep your heart open in hell. You have to look at what is, and say Yea, Right. And what it involves is bearing the unbearable. And in a way, who you think you are can’t do it. Who you really are can do it. So that who you think you are dies in the process." Very powerful words...keeping your heart open in hell...thinking about how fear and anger sometimes keep my heart closed and how sometimes they are integral to my keeping my heart open. And making the distinction between who you really are and who you think you are...I can get so caught up in a particular image of myself...can I always be authentic and genuine? Do I need to be?
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Hopeful34... My mom had pleural effusion and after several thoracentesis she opted for a Pleural X Catheter and it really gave her a lot of relief. But I hope yours goes away -- I have heard often it does. Praying for you... stay hopeful!
Divine M-- I love "ahead of time" obit. I always love your upbeat and positive posts. You are a lovely person.
All of you ladies are amazing
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Hi, Rosevalley, and thank you for letting us know about Wilsie and JustJudy, hard as it is. At least we know they are in a better place and out of pain and misery. I'm so glad you'll be getting relief tomorrow.
We had a fire that ran up to the local Bass Lake, but didn't jump it. They pull out all stops if we get a fire up here as I'm sure they do for you, too. We've seen quite a few helicopters with buckets the last few years. The drought is really causing problems.
xoxoxoxoxox and seeing a perfect draining tomorrow!
Calico
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Sandy- my onc also said the afinitor aromasin combo was pretty doable.. I decided it was a game breaker and left for 6 months. Afinitor is evil. I am so sick of medicine saying suck it up. I tolerate pain better then anyone I know, but the relentless side effects. Geez it can get a person down. This recent month long episode of abdominal pain nausea, misery.. takes weeks to get folks attention and finally tumor markers get drawn - oh and wonder of wonders they are double... major huge progression. Maybe Dr. No will let me try something doable, instead of "no" with no answer of why. Maybe it's just too late - held hostage to a stubbord paradigm of "these drugs first..." I decide and you shut up and take what I give you or die. After all they get paid either way. I resent the way things are in oncology, some of it is pure stubborness and refusal to change based on no science.
Brendatrue- I am just rolling with these new changes south. Some day I will be tree food and this very unfunny comedy will be past me. Little bit I let go, of dreams, wants, desires, ideas of the ways things have to be... gently floating them down stream on leaves. Funny what we hold on to.
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Hi, Brendatrue, I so appreciate your posts and how you check in with everyone. I've been thinking about "keeping your heart open in hell", and think that the only thing that allows me to begin to try and do that is the love and support I find here.
With love and deepest appreciation,
Calico
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Calico- well said. We nurture each other on the journey by what we share.
Thank you to all.
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you all: I will never forget you, for showing me how it's done.
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Yes rosie we sure do, did u ever have an open lung biopsy withe the talc to glue it. I got it and it worked, havent had a problem with that since
Welcome hopeful, good luck keep coming back
This trip like my dying wish, wish my kids would get it my stepdaughter does. i am having an issue with nausea meds. Medicare wont pay 4 it cause i am not on chemo anymore. The hospice nurse, social worker, my mo the hospjce pharmacy n cvs were all tding to figure it out. They want me to take compezine but it makes me sick, ultimately they gave me somethine that starts with an m for it too it n it makes me woozy, wth.
Thanks to u all
Calico big hugs n hope this chemo is gentle
Hi brenda
Tom u will figure out what is best 4 u when the time comes.
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Blondie have a WONDERFUL TIME! Can't your team get you some zofran? Compazine sucks makes you hung over, old drug and cheap. I hope they get things figured out. Just enjoy and soak it all in. Take naps so you don't over do it. We all are in your back pocket in hoping you have a good time. ((((Hugs))))
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Well I guess Blondie got her meeting with Spookie and Sassy and they posted some cute pictures n the insomniac forum. So if you want to see them visiting go over and take a look. Blondie looks good, happy and enjoying herself. May the rest of her trip go smoothly and well. She was so happy about this trip. Nice start.
Well had my onc visit today. After asking for months I finally get to try Ibrance. I think it's too late for anything to do much considering what' going on, but worth a try. He also suggested some zaps with radiation to the areas of my spine and hip that are giving me grief. It's a little scary zapping your cervical vertebrae.. which right now are making so much noise it's alarming. Snapping, crackling and popping. It is conducted against the mastoid bone and I hear it. oy.. if my head falls off that'll be it! Haha. Never ends in cancerland does it. I do not want to die during the holidays and I find myself pondering this.. no croaking on Thanksgiving and Christmas.. kids birthdays in December and March. Must pass before or after those dates. As Calico's oncologist pointed out-"you don't get that much control over your life."
Hope everyone's radiation treatments are going smoothly. Hugs to ya'll.
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WHAT???? This is great news, my west coast friend!!! I refuse to believe it's too late to make a difference, and if the rads will put an end to the pain & crackling (which seems so on the bone mets thread), worth a try, don't you think? You will always have important dates to live for...which is why we pray for this to work!!!! Hoping you will start soon!!!
I'll check out Blondie's pix...since I'm awake...again!
Ps...it's a cooler night in Seattle...hope it is for you too, Spring!
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Good grief....either chemo brain sucks or I should wait to post until fully awake...that message was for you...ROSE!!!
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Blondie, the vacation smile is priceless! I am so happy you ladies are having a great time! Cheryl
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Saw the pics with Blondie. Wonderful!
Rosevalley - Read Ibrance was approved for you! Wishing you the very best! and hope you're feeling better.
Linda
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yes I will believe the Ibrance when it shows up at the door. I took a femara this morning. We will see. If you read the literature there isn't really anything that puts the breaks on malignant ascites once it starts it's fast and furious, no matter what you throw at it. So I have about no expectations of anything working. No disappointment either right? I will swallow it. we will see. I surely do not want anyone on the Ibrance thread to think that what happens in my case would be what might happen to them. I finally got the drug way too late.
Well our cabin has potentially been sold. It was time. We have an accepted offer, but it hasn't closed and so no counting chickens before they hatch. It is too much work to keep up and I don't have the health to do it. My DH is spread so thin now, I wonder when he'll crack. I hope the new owners enjoy it! I feel relief, one less thing to worry about. Letting things go. Now if I go to the forest it will be for the day or maybe stay at Breittenbush.
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Rosevalley, I hope the deal is done, and you can enjoy the woods without all of the worry and work. And I hope that the lbrance will rock it out of the park for you.
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OMG that is a great obit Divine. I haven't been here for a while, so I needed to acknowledge your suggestion to me now before it disappears into the ether or some well guarded crevice in my chemo brain.
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What an odd feeling: going around shutting down our own lives. Nonetheless, I need to do it. The new chemo is kicking my butt. I'll give it a try again next week, but if I have all these bad days again, I think it would be unwise to stay with it. One good thing about feeling miserable is you get more ready to see what comes next.
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Dunes- you can't take anything with you, not even your body. Nothing is really "ours" to keep, it's all constructions of the mind and language- not real. This is true regardless of the belief system you have.
Hey Calico you ok? Check in tell us how you be. Brenda- you too. Hope everyone has a pain free day. ((hugs))
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I just got a email from a friend that wants to talk about celebrations of life. She means well. She is very Catholic and it's a part of her tradition. I hope I didn't come down too hard. I just hate the idea of memorial services and celebrations of life with photo montage, music and eats.. like some contrived picnic. ugh.. All the memorial services I have been too were rather traumatic and not happy comforting events. why do that to your kids? I don't want any of it, no obit, no rambling in the papers zip. Cremate me and tuck my ashes under the moss at the base of a huge Doug Fir tree in the forest. No marker back to earth. Then go live life! I will be there along the way in different form still part of the universe. Geez. My DD2 said she would get a tattoo of a pine cone to memorialize me... I said you better not or I will find a way to haunt you.
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We can say what we'd like done with our remains, cremains and whether or not we'd like a memorial service, but we don't have a say so over how our loved ones will deal with our passing. To say to them, just get on with your life, is somewhat unrealistic. Yes, they will move forward, but they will still be grieving for a period of time. It is a natural process and is love expressing itself in another form.0
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No one said the grief process wouldn't be whatever it is. Of course each person (at different ages) will react differently. The person who dies has no control over how their family will react. You can sow the seeds of expectation that you want life to continue, new relationships to form, new attachments to be made and life to move on. I think it is sad not to give your spouse and kids permission to move on and enjoy life and new people and relationships. Saying nothing doesn't help, it leaves them hanging. My kids are 14, 19 and 21 and my DH is just 56. I would be sad to think they got stuck in grief and didn't move forward. I want it clear that they have my love and my permission to move on and find more folks to love in their lives. Take care of each other and enjoy life. It's what I want for them.
I do not mean to offend about the celebration of life and memorial parties that many folks enjoy. If it is part of your tradition and brings you comfort and helps your family then go for it. It doesn't speak to me personally. I can truly feel happy for folks when it brings them joy. Sharing in what makes another person happy is a good thing.
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I got a call from the RO department that they needed 6 separate, 45 minutes each MRIs before they could do any radiation. Since there were so many, it would be more than a week or two before they could even get that much scanner time... then the RO mapping, then they actually do it.. lets see where does that put us August? Whoever heard of 6 separate sessions of MRIs 45 minutes each for 3 spinal areas and the left hip? I cancelled the RO, hassle factor way too high for the benefit. Ibrance still isn't approved and the universe is sending me a clear message here. You are not going to get what you need, quit. Be free - take wings.
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