A place to talk death and dying issues
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I am so happy I found this group. I can't talk to anyone about my fears of dying and leaving my kids and husband. Everyone just wants me to focus on the positive, and while I know its true, I can't ignore the reality of my progression either. The past 5 years have basically sucked! LOL! It started with my mastectomy in 11/10, when my stage 0 DCIS was discovered to be stage 3 IDC with 11/12 nodes involved. It was also HER2+ which has been a real pain in the ass for me.
On the 1 year mark of my mastectomy, my only sister Kim, was murdered by her husband of 20 years. It came out of nowhere and was for money and appearances. She died a horrible death that wasn't quick since she had blunt force trauma to the head and then he strangled her. He is now in prison in Trenton NJ for 30 years without parole. My cancer returned due to the stress of this. I also took in my two nephews to add to my 3 girls. The youngest nephew turned out to be severely mentally ill and threatened to kill my two younger daughters, and was having auditory hallucinations. If he was 18 he would have been dx as a sociopath. After dealing with the stress he caused on top of awaiting the trial, and having several more recurrences in two years we were advised by his doctors that he needed to live somewhere there were no young girls. He went VA to live with his father's brother and his wife who are in the Navy. Things seemed to relax a bit until my youngest began having severe anxiety and had to be home schooled for a semester. After months of therapy and finding the right medicine she is now happy and healthy.
Last fall I had to go on Taxol because yet another lymph node in my clavicle became active. That meant losing my hair once again, which was actually harder than the first time. I ended treatment last December and in March I had my bi-annual brain MRI. I was found to have a tiny spot on my cerebellum, near the surface, which I had SRS for. Two months later, the new scan showed it was completely gone but a smaller spot was now on my frontal lobe. However when they compared the two scans they noticed that the new spot was on the initial scan but they missed it. So I had another round of SRS, and it was gone. After meeting with my oncologist, she said I was at a crossroads because I had been through every HER2+ targeted therapy and none of them worked. All that was left were harsher, older chemos that she couldn't promise would work. So I took a break from treatment. I figured that if there was nothing left for me to do, then at least I could have control over my quality of life. Recently I have been dealing with severe pain in my implant, and the muscles surrounding this area. A trip to the ER showed I have a grade 4 ruptured implant as well as another tumor in my neck/clavicle area. Had a CT scan and a breast MRI so I know that my lungs, chest wall, abdomen, axila and my left breast is clear. So, now I am waiting until the 21st to have this stupid rock removed. I go on the 15th to my new oncologist and maybe there will be a new trial I can take part in or a new drug I can try.
If it weren't for my kids, I don't know if I would have had the strength to go through all I have. The hardest thing is knowing I may not see any of my girls get married or have babies. At this rate, I am hoping to be around to see my second girl graduate HS in June.
Barb
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Xavo, she's deleted a lot of posts. I'm concerbed, too
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keesmom,
You've been thru hell. I'm so sorry to read about the horrible events in your life.I don't know what to say but hang in there. We are here for you. I have a precious littlest one, too, and I am going to push thru this for him.
Thinking of you, letranger
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Many coming and going around here. Hortense, I was struck with your words about trying to live peacefully day to day. Trying to do that while also being more exhausted and doing the "hard work" of dying is no simple feat. Being more mindful and attentive to your own needs is not selfish, to say the least, in my opinion. Of course, we don't want our loved ones to hurt, but we cannot stop them from caring and hurting in the midst of loss and anticipated loss. However, I do think that trying to be mindful and as present as we are able and peaceful--if that is our wish-- is a way of giving a gift to our loved ones as they cope with the prospect of loss, their loss of us.
Zills, I like your reframe of how your children are learning compassion. Although I do not have children, I know that being open about my personal experience has caused some of my loved ones to become more compassionate--I hope not just toward me but toward the countless others who face adversity as well. What might this world become if we all had deeper empathy and compassion for others?
Skylotus, I know what you mean about being empathic toward others. Actually, being overly empathic toward others in the past led me to be less than accepting of my own needs and less compassionate toward myself. Like you I think of universal suffering and I know that my suffering is not unique and I know that my suffering is more tolerable for me than the suffering that so many people around the world are enduring. Yet, I also know that I am the only one who is living my one special life and so I try to extend kindness and compassion toward myself. It seems like the further and further into this struggle I go the more I value compassion--from others, toward others, toward myself.
Letranger, it sounds like you have a heart full of love, and you probably find hundreds of ways to infuse your relationship with your son with love. However long you and he share this planet, I imagine he will know that love, and he will carry it with him for as long as he breathes. Please don't think I offer that in a way that minimizes the pain over the prospect of separation; I don't. But when I find myself focusing on separation and what might happen in the future, I make a conscious effort to focus on what I am giving--and receiving--in the here and now that transforms me and all those to whom I give. Some days that thought alone is what helps me to move forward.
Keesmom/Barb, I'm glad you've found this thread, too. I hope it will prove to be a safe place for you to share your fear of dying and of leaving behind those you love, to receive support, to help you cope with a load of life stressors, and to connect with those who have respect for what this thread is all about. I have found that the more I have faced my concerns about dying and leaving behind those I cherish, the more that I have been able to live more fully in the moment. And I have learned that the unsettling aspect of planning for the near future is less daunting. I hope your appointment on the 15th with the MO and your surgery on the 21st will go as well as possible. Keep us posted.
M360, Thanks for sharing the news about no progression and stability! I'm glad for you and to hear that your Thanksgiving was a beautiful one.
Xavo, PattiP, Blondie, your posts are always welcomed in my inbox!
And finally, Rose, I thank you for your kind words following my last post. Although they no longer appear, I remember and appreciate them, as I do all your heartfelt posts. Facing what you are facing each and every day is a trial, and I hope you know that each of us brings our own level of understanding and acceptance in response. I think we all just do the best we can, most of the time. Do what you need to do to take care of yourself and remember you will be held in the thoughts and hearts of many here even if you choose no longer to post. In lovingkindness always....
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Thank you, Brendatrue, for your words and compassion. Your words are special, loving and speaks to my heart.
I love this quote, so this is for all of our SUPERB METERS out there. I love all of you.
"I would rather be ashes than dust!
I would rather that my spark should burn out in a brilliant blaze than it should be stifled by dry-rot.
I would rather be a superb meteor, every atom of me in magnificent glow, than a sleepy and permanent planet.
The function of man is to live, not to exist.
I shall not waste my days trying to prolong them.
I shall use my time." Jack London0 -
I decided that I had had diarrhea of the fingers and was just blabbing way too much. Sometimes I disclose too much. So like a Buddhist making a sand painting, once it's done they blow it away. Impermanence. No trace. I started back tracking deleting and wow.. I yacked up for miles. i finally gave up.phooey. Unlike many folks, I am fine being forgotten and woven back into the mud and moss.
It's wonderful to share but I also want not to influence folks and let them investigate and find their own path. Death and dying while it's universally applied, how we "do" it is as individual as we are. This is good. Variety and change is good. Many paths up a Mountain.
Keesmom- holy cow.. I feel for you. What an ordeal. They tried Herceptin on me too and 4 cycles have done zip. I hope you find a combo that works. You were kind to take your sister's sons. Good luck on the brain radiation.
Wow more rain coming down.. buckets all day. We even had cracks of lightening and thunder boomers this morning! My poor dogs were panting and hysterical. No rain all summer and now it hardly pauses. The snow is really coming down in the mountains, very pretty to see in the distance. Stay dry. Lovingkindness to all.
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Rosie, stop that, you may go to the ether, but all we have of you is your words. They help. pretty please with a Santa on top.
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Keesmom, we are here to listen to you! So sorry for all that you have to go through. Wish you great success in your treatments!
Rosevalley, so glad to hear from you! I second sas-s, your posts are great contribution to the boards. Why made them disappear?
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Thanks so much for all your caring words and support. It means a lot to me. Yes the past 5 years haven't been the best, but I am very blessed to have family and friends who care. That's more than some have. A co-worker of my daughters was a nurse and told me to check out meditation for pain videos. She said they work well, so I am going to check them out. I'll let you know if any work!
Hang in there everyone. I'm keeping you all in my prayers,
((hugs))
Barb
PS I started a blog about cancer, books, and writing and how they give me hope. Check it out if you'd like.
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Keesmom, I have a suggestion. It goes along with the meditation, but is a bit different. !975 I was in cervical neck traction. Pain was awful., Wore a collar most hours. Probably around 18 to 20 hours a day. 10 lbs of cervical traction. I was into doing stuff before stuff was recognized. I visualized my neck and repeated it will be numb, it will be numb. Just made it up b/c I was desperate. Within a short time it worked really well. I could touch the area and it was numb like it would be with lidocaine. Pain was tamed. Either gone or way down. The strange side effect was I got high. Unusual, but loved being pain free. Within a few months the Readers Digest had a story about Endorphins the bodies natural pain reliever.
I was producing Endorphins. I became very respectful of doing it. I learned real quick I couldn't do it and consider working. The high part was a blissful feeling of well being. Think runners high. No pain--cool.
I did deduce I could not accomplish this if any other drug was on board. Which was very interesting.
Once at work years later I was in extreme pain. My workmate quizzed me and I told him what I just told you. He said "Just do it". I did. Pain was gone, but he had to drive me home. LOL.
I should get back into it b/c I have spinal pain on many levels.
When you read the meditation stuff add in my stuff. See if it works more when you specifically think directly about the paining part and it being numb. Send me a PM if you have luck with this.
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Here's a free source of healing recordings:
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Rosevalley: Thanks for sharing your beautiful "family sand painting" with us. Though most of them are deleted, but they gave me a permanent impression just how beautiful and unselfishness your loves are. Words and stories do leave memories. I still keep Capriness/Terri thread on my favorite and go back to read those funny and courageous episodes from time to time.
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Oy... I feel so awful. I took the xeloda yesterday with tapioca.. could barely get it down. It says take with food. I haven't been hardly able to eat for weeks. Anyway.. got up feeling lousy. Took 5mg reglan. Drained 1400 off the pleurx and then puked my guts up. I can't get over there was that much fluid in my stomach after all night. So am trying dissolving zofran... oy. The thought of eating anything and taking those 2 xeloda pills makes me green. Cancer is so hard. I wanted to make it to my kids birthdays... and Christmas.
Honestly I could kick Dec 26th the day I found out I had breast cancer in 2007. I am so sick of feeling sick.. month after month after month. Wouldn't that be ironic to die on the same day as you were diagnosed?
I decided to be grateful for the 57 years I have had and all my kids are alive and well enough. DH is good. A young woman we have known for years lost her 6 month old baby and medicine could not save him. I can't imagine losing a baby.
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Have you ever taken Diuretics, Rosevalley?
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Yes prior to all this. We tried spironolactone since a small % of malignant ascites patients respond to that, but it did nothing to curb the ascites. The pleurx cath works getting fluid off. I used to take maxide for HTN but my BP is low and the continual decrease in food and fluids.. that got ditched. Too dry. Today is an icky day. Listening to Christmas carols and sitting int he recliner feeling awful.
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Rose - holding your hand as you sit in your recliner and sending you tons of hugs.
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rose valley, I know nothing of your condition or pain. But I just can't sit back and read your posts and not respond. So I googled this in an effortto help. ( http://www.home-remedies-for-you.com/remedy/Ascite... ) I understand that you just can't eat anything. I'm on xeloda too and have lost my appetite. But I hope the xeloda helps in treating you in some way.
From website
- Apart from these medical treatments there are also a number of natural cures for ascites. Remedies such as these can offer symptomatic relief:
- Add half teaspoon of garlic juice to a glass of water and drink this on an empty stomach. Do this for a few days to reduce the pain and swelling.
- Mix 25gms of bitter gourd juice with water and drink this concoction thrice a day for relief from ascites.
- Juice half a cup of radish leaves and mix the juice with a little water. Drink this regularly as it is an effective home remedy for ascites
- Soak a handful of fenugreek seeds in water and leave the bowl undisturbed overnight. The next morning, gently swirl the seeds and water and then strain it with a muslin cloth. Drink the liquid immediately.
- Mangoes are said to be beneficial in the treatment of ascites. Try to eat at least two fresh mangoes daily for the best results.
- Drink fresh carrot juice or melon juice for quick relief from ascites symptoms.
- Onions are a diuretic and will help to reduce water retention.
- A light abdominal massage with castor oil may reduce bloating and gas. You will need to first discuss this with a massage therapist as well as your doctor.
- Dandelion root or Gravel root can improve the functioning of the kidneys as they work as natural diuretics. Similarly, you can uses herbs such as buckthorn, rhubarb root, senna, and aloe for the same purpose.
- Hot water fomentation using asafetida and warm water can help to relieve abdominal swelling.
- The diuretic properties of Black Nightshade can help treat ascites. Parts of this plant can be toxic and so it is important to discuss this with a herbalist who is well versed with this plant.
- Hogweed is a potent diuretic and is especially useful in treating ascites caused by cirrhosis. Boil a little hogweed in a glass of water and drink this liquid in small sips throughout the day.
Letranger
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Hey Rose - I am sitting with you and listening to Christmas music too. Any chance you can get a healthcare worker in to see you today or (don't hate me) a trip to emerg might at least make you feel better - I hate that you're feeling so crappy. Sending love and hugs, S.
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Please be careful if you're going to use the hogweed. There are several species, and one of them will burn your skin (we have that one growing in our yard). If it burns your skin, I suspect it may make things worse taken internally. Your safest bet is to buy it from an Indian market or from someone with knowledge of ayurvedic medicine. They supply the one used specifically for health reasons.
Hope you find something that works for you.
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I'm so very sorry for your pain, Rosevalley! I am also thinking that you should go to the ER to seek help. Try to get a test, CT or even just blood draw, to have a better idea of what is going on. The blood work can tell how your liver and kidneys are. An imaging test can see if you have any blockage. So you could be treated. Do you think you could do it? Hugs...
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Oh rose. You are so close. I understand both sides of your delima.
When I couldn't eat but needed to take pills, those boost or ensure drinks were a godsend. They make them in juice form now. Don't know if that would help with the pill taking.
I hope you find some relief soon.
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Rosevalley, I am so very sorry for how bad you are feeling. Being new to the boards I have only a brief idea of your story. I take it from the comments that you don't like ER's? I know that can be hard but look how strong and brave you have been for the past 8 years. You have faced worse things then the ER. It's important to go there now for several reasons.
1. You have not been able to eat anything and the nausea is a big problem.
They could get fluids into you as well as meds to stop the nausea. Its a catch 22. You get nauseous and can't eat, but the less you eat or drink, the more dehydrated you get and the more stomach acids build up making you more nauseous!
2. You are in a lot of pain
They will give you morphine. You also could ask to get a prescription for a morphine patch which will lessen the amount of pills to swallow. When you get pain relief and stay on top of it, you feel better and can think more positively.
3. You need the Xeloda to fight your cancer.
Once the nausea is gone the pills may be easier to swallow. If not, then you need to ask if there is a way they can be taken rectally, (sometimes in a different form), or if there is an injectible form. If not, talk to your Dr about a different type of chemo.
4. You need to be proactive and do something to feel better and not just sit there waiting to die.
You have more living to do and people that love you and still need you. Do not just quit! That's what cancer wants. Don't let it win. Don't sit there in pain allowing it to steal your happiness and peace. If this is meant to be your end, then die comfortably without pain or worries!
When I was on Xeloda in 2012, I also had to take Tykerb which was 5 big pills 2x a day. At that time I think I counted 16 pills that I had to take. The stupid Tykerb gave me such bad diarrhea I lost 21 pounds. I eventually had to go off of it because It wouldn't stop. I remember hearing a dr say that most cancer patients actually die of mal-nourishment and not from their cancer.
Please go to the hospital asap. They can ease your suffering, and even if they can't make you better, they can make dying more peaceful for you. You will be in my prayers and thoughts. Much love to you and gentle hugs.
Barb
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Rose - if you're up to it please check in - if not sending a huge, gentle hug.
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DH just sent the computer. I went to ER and am admitted to onc floor since Sat. CT showed partial blockage and back up.. puking. Finally stopped.. narrowly missed getting NG. They started.. OUCH.. Doc said try reglan, nausea meds and fluids - rest the bowels. Port is so nice. Good bowel rest. All the nurses so nice. Might be liquids from here on out. Meet my Onc tomorrow.. then decide. I feel better. Kids here to visit. Yay ! 14 year old very tearful. Got to go. Lovingkindnes to all. ((((hugs))))
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Rest well, Rosevalley. Thanks for letting us know that you are feeling better now. Good night.
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Dear Rose,
I joined bc.org to meet you and others with ascites and peritoneal mets.
Like you, I have an implanted drain and have removed 2 liters of fluid every other day at home. I've had many symptoms associated with the ascites and draining, having had ascites for a year and drained since mid-August.
Rosevalley, I want to offer supportive words, about how watermelon juice helped me in summer and how the homeopathic nux vomica helps me with nausea but I'm very concerned with how you're doing over all.
Why is your doctor ordering oral drugs, if you can't keep anything down? Who's keeping track of your overall well being? A palliative care doctor or team? Others? Do you have nursing care at home (at least) or hospice at home (better)?
Oops, you've posted since I started this reply and I see you're in hospital now and been through ER.
Are you happy with going from one emergency situation to the next?
I ask because I became increasingly unhappy with it and unwilling to go to the ER or Urgent Care facility. I was already receiving palliative care to help me with symptoms and unwanted treatment effects, but switched to hospice at the beginning of November. I still take Femara which is all of $10 a month now that it's generic. But, I have a whole team of professionals who support my loved ones and me at home. If there's a medical need, there is 24/7 back up, so I get good care at home. The intensity of my suffering is so dialed down from what it was before hospice and I'm grateful for their help.
Rosevalley, I don't know what the Oregon rules are nor why you haven't pursued at least palliative, if not hospice, care.
I do know that I've held you in loving, healing light for many weeks as we're in similar places on our advanced breast cancer journey.
another well wisher, Stephanie
P.S. an ng tube feels disgusting going in, but does a stupendous job relieving pressure on the gut. There's a price to pay for it, but it can be a friend in a time of need.
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Hey there, Rose--So kind of you to give us a quick update. I and many others hold you in our thoughts and hopes for better quality of life. What a relief to know that you are more comfortable and have nice folks looking out for you.
Stephanie, If I remember correctly, Rose is connected with a palliative care program. Hospice did not meet her needs a while back, but their philosophy and program benefits may meet her needs now or in the future. Rose, hope you don't mind me making that comment.
More when I am less tired and can think straight....
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waving Hi. Lurking.
Hugs all around
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Stephanie- I had hospice out to the house in August intending to go for it. It wasn't until the facts rolled in about how little was covered that I bailed. i have more options off hospice than on from an insurance coverage standpoint. I got the pleurx drain for instance that wasn't covered before. I am with pallative care. This trip to the ER was way better not as busy got right back and right up stairs. Fluids have helped. i tried a clear liq tray and we will see what happens. i can pass gas and have had loose stools from the reglan (just started) so this is a partial blockage. I met with the surgeon who said there really isn't any "fix." The cancer has thickened everything and is gumming up the works. I will make it through Christmas. I need to talk to oncologist about what if any options there are. There was talk of a peg tub to pull off gastric contents before I vomit. I need to talk to onc in am.
DD3 is only 14 and my family all came to see me. She was so tearful, breaking down multiple times. "Crying please come home now." I tried to explain... she just cried. Kills me. No interest in seeing me here. I am a holiday buster.. wish me luck. I will need it.
((((Hugs))))
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Rose--sending you lots of love and light from the east coast! Praying you get answers to your questions.
Kristin
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