A place to talk death and dying issues
Comments
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Maureen, my dear Halaven friend, I'm so sorry to hear of your pain and hope that it gets under control stat. I wish I could hold your hand while we just sit and breathe together. Sending you and your family massive prayers. ~JL
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I'm so heartbroken to read the news on this thread for all but especially Lynne & Maureen. Cyber hugs to both of you. dee
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Jobur - thank you for your thoughts and well wishes, I had hoped for positive CT but it wasn’t meant to be.
Anotherone - thank you, I do have great support at home, a wonderful DH that never ceases to amaze me. And a sister I grow closer to each week.
JayLea - So nice to hear your gentle words again. I take your virtual hand and we’ll just be together. I hope you are healing quickly from your fracture and your pain is under control.
GG27 - Hugs to you too. I am always uplifted seeing your name
Unfortunately, Doxil didn’t work for me, I am hoping that it is treating you well, with the best possible outcome.I wanted to correct a wrong word I used for my additional metastasis, it is not peritoneal but rather “Omentum” which I just got clarified from my palliative care doc. I don’t think I’ve hear or read anyone with this metastasis, so I will definitely have to do some research, it might further explain my intensifying pain.
Thoughts and prayers to everyone, Maureen
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Aw Maureen, I'm sorry you're in such pain. I feel for you. Having the feeling that you're about to "call it" is sort of frightening and relieving at the same time. Hopefully by now you've gotten the pain under control?
It's been an interesting week for me. Sunday the pain was in the left ribs. Monday afternoon it decided to shift to the same place on the right. Bottom two ribs. Same intensity. I could only move if I took oxycodone. By Wednesday it had faded away except if I try to lie flat. So I'm still sleeping sitting up.
The lasix has gotten the fluid in my lungs under control. I don't feel like I'm wheezing wet. Legs are still somewhat swollen. But in the meantime at 5:30pm each day for the last three days my stomach has "gone out". I threw up dinner the first night. I think I have it under control but if it doesn't stay that way I'll have to report in.
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Sending hugs to Maureen and Lynne and Pajim. So many having a rough time on this thread. This all doesn't seem real sometimes. I am in NY where lockdown is happening. My MO was mostly teleconferencing but since mine was last of the day I came in. Totally empty waiting room, was just me. While discussing continuing treatment she mentioned "life saving treatment does not stop during all this"....Life saving treatment....Omg....If tumor markers are up again I'm concerned it might mean current combo would might need to change, boy would that be wonderful timing with all that's going on here statewide. That would mean shots tho, MO already doesn't want me coming in for quarterly zometa next month. Talk about a situation of pick up cards.
I've dipped my toe into the MM arena for pain. I literally could not stand up straight without yelping some days and MO not wanting me on narcotics right now long term said it couldn't hurt to try this before considering pain meds. Its been a week with the tinctures, so far its keeping things level and I can move now alittle easier. 20:1 THC for pain and 1:20 CBD for some tranquility. So far so good, will know in another week if I'm truly onboard with this way of treating pain, just having the edge off a little bit in terms of pain does wonders, isn't it weird to learn to live with pain, as if its some normal thing?
I read what you ladies are going through and I truly ache inside. Its really not fair. You ladies handle yourselves with such grace and strength even though there is absolutely nothing graceful about stage 4 cancer. I am with you ladies in heart, hoping guidance comes in the hard decision making processes and for their to be relief of some kind in terms of pain and SE. Damn cancer to hell.
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Hi, Maureen. I'm sorry for what you're going through. I wanted to let you know that my cancer was found in two places in my stomach in early 2019. I had my second CT scan in February of this year, and the report said there is a spot that measures .5x1.4 cm on my omentum. I am having a PET scan on Monday to see if it's progressed. I'm hoping it was just a shadow, and I will keep you posted.
I am skeptical of a PET scan, or any scan for that matter. No scan yet has shown the cancer.
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Maureen, are you ILC, too? Isn't omentum mets typically ILC? If so, maybe there are other changes in your cancer.
Have you been rebiopsied lately and sent for new panel F1? Would just hate for you to miss other treatment choices.
Just seems odd you have omentum mets with IDC.
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pajim - you are having some troubling times. Breathing problems are an unsettling symptom to any disease or illness and pain that no one can fully explain is so frustrating and draining. Along with nausea and swelling you almost have it all. Now that the pain seems to have resolved a bit will they still investigate the cause? Do you think that all these symptoms are related to one cause, like a side effect to your new treatment?
RadagastRabbit - it must had been a surreal experience to be the only one in for an appointment. I did try a CBD product in the beginning but it didn't touch the pain, then I tried a small percentage of a THC product still no effect and I didn't like the feeling
do you know the source of your pain? I truly hope your pain remains controlled or even resolves. Thank you so much for your support.KBL - I hope your PET discover no new mets and no progression. Were the 2 in 2019 also omentum? Do these mets cause you any pain.
SandiBeach - I have read so many of your posts. Oh my gosh, I am in shock at what you are saying. I am not ILC or so I think. I was never biopsied, I was told that in the beginning my liver tumour was to close to the artery and therefore too dangerous. At one point I asked again for a biopsy and it would have been possible but he told me that regardless of the biopsy his treatment choices would not have changed , so because I has having aggressive progression at that point I didn't get the biopsy the either. After reading your post I immediately phoned and left a message at the MOs office for first thing Monday morning. It is probably too late but maybe this is new hope.
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Hi, Maureen. The two places in 2019 were found in my stomach after two endoscopies. I had lost a lot of weight and wasn't able to eat much due to immediate fullness. That's why they did the endoscopy. They didn't take enough samples in the first endoscopy and only found it in one spot in my stomach. They took more samples in the second, and it was found in a second spot in my stomach. I have had no pain per se. I still can't eat too much or I'm miserable. I also have a thickness in my throat with phlegm and now having some trouble with the dry food getting a little stuck on the way down. I have to drink something after almost every bite. I have been holding my weight steady, so I'm hoping the medication is working.
After my PET, I'm going to make an appointment to possibly have another endoscopy to see if anything has changed. I’ll have to wait probably due to it not being a necessary procedure at this time
Thank you for your thoughts on PET. I'll keep you posted.
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Maureen, I am not sure of your health status, but could a FNA (fine needle aspirate) be done on your mets to check changes in hormonal status and maybe a send out for liquid bx to check for mutations?
Thinking of you.
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Hi, Maureen! I had my PET scan this morning, and can you believe I just went to check to see if, by chance, they had the results up, and they did. My cancer center is amazing. Here is the impression, which, to me, means it will be a wait-and-watch situation. Nothing lit up, but there is a haze or shadow on my omentum. I'm going to take this as good news and just watch it as we go along. Once again, since the beginning every scan has not shown the cancer. I'm not sure why, but I have heard that lobular can by tricky to see on scans. I'm going to keep my eye and enjoy life at this point because I'm still feeling decent. I think I'll know when something is wrong, like I did when I first was diagnosed.
IMPRESSION:
There is no FDG avid evidence of metastatic disease. Some minimal haziness in portions of the omentum are noted but without significant metabolic activity. Follow-up CT could be performed if clinically indicated to confirm stability.0 -
Maureen, Yep, it really was. In an office where you normally cannot hear the background music its so busy, to be sitting in a room hearing kenny g clear as a bell felt almost like I was in the wrong place. When I was first diagnosed early stage my first visit on the oncology floor was eye opening, you read about cancer often in the news, sometimes Id hear about prayer requests in church that someone was just diagnosed, but it wasn't until I saw the sheer volume of people walking through those doors with my own eyes did I see how many lives cancer effects, its horrifying. I'm the youngest on the floor 95% of the time, it wasn't till I went to Sloan a few times for my ovary removal that I saw all the young people. My biggest problem is my back, I have mets in T1, T2, T4, T5, T8, T10, T12, L1, L2, L3, L4, S1 ....T4 and T5 have 2.5cm ish lesions and T12 about 2cm. All the others in the spine are 1cm or less. Everywhere else is another story. Right between the shoulder blades and at the middle of the base of my back hurt the most, I hurt all over, but the back is the worst. Ive tried every over the counter pain med, I tried gabapentin, now trying the CBD/THC, its going into week 2 and while it is kinda relaxing (the tinctures) and there might of been a slight placebo effect it really hasn't touched the pain at all, plus its not cheap. I felt so awkward going into a pot store, haven't smoked a thing in my life, I just want the pain to stop or at least lessen a bit. I keep getting talked out of pain meds and part of me wants to save those big guns for when I need it most, just like I'm being careful to keep a healthy vein in my good arm for when I need it, its just hard making these decisions, I don't like it. Ive kept the MM thing to just a few people close to me, some people have judgements about it, like you wanna get baked out of your gourd or something. Nah, I just want to stop hurting.
What has worked for you ladies in terms of pain and how much? I nap now during the day, i'm happy I can rest now a bit, just wondering how much pain meds will knock me off my feet or have me passing frozen peas. Afraid to take the plunge, i need help to sleep at night, how much more will I need to depend on? I'm a gut it out kinda gal, Ive always just put my head down and pushed through things, but this is much harder, its not like others things where I've pushed through knowing there was healing on the other side, like with my surgeries etc, this doesn't seem like it will have an ending until there is an ending to me.
Thinking of you Maureen, 50sgirl and Pajim. I wish I was a better supporter and encourager, especially now when it really matters. I don't know how you ladies feel, but lately for me, having people say nothing and offering a hug instead is all that is needed. Sometimes things can't be put into words. Love to you ladies.
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KBL - I can't believe how quick those results came, it is always nice not to have to wait and worry. The words on the report "confirm stability" are very reassuring. Will you have that CT or watch and wait?
RadgastRabbit - I'm so sorry your spine sounds like it could be very painful. My pain is managed by a palliative care doctor and treating pain is pretty much done by following a protocol. I have been on opiod medication for over a year and since December my drugs have increased to high doses but I have never been over medicated and although when adjusting to a new dosage I may have a day or two of drowsiness I've never been bedridden. Pain control is so important to QOL. Constipation is horrible but treatable. Thank you so much for your support, a virtual hug is sometimes all that's needed.
SandiBeach57 - unfortunately, my options are over. There is no more treatment options for me. I talked with my MO and my palliative care team yesterday and I have been told attempting anymore treatment will be too toxic on my liver and would actually shorten my life. Now it is a matter of pain relief and enjoy what I can for as long as I can. They can't know exactly how long and I plan to be stubborn but 4 to 6 months was what they gave me when they pulled me off treatment in December but then I convinced them to try Doxil.
I hope some can help me get through this, for a little bit anyway. I love my family and I have great friends for support but only those here know what I'll be facing in the next couple of months.
Thoughts and prayers, Maureen
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Hi, Maureen. The reason for the PET was because I had a CT in February where they saw whatever it is on my omentum. I doubt insurance will let me have another right now, so I’ll have to wait probably two or three months before they approve again. I’ll have to see what doctor says at my upcoming appointment. I like “stability” too
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Hi Maureen. I am sorry to hear you are out of options. I so want to just give you a big ole bear hug and wipe your tears.
To be told that there is no more treatment because your liver is so fragile has to be the worse conversation to have with your MO. Especially when you want to live and experience life and just feel normal for once. Especially when you hope there are options left to be explored.
Please remember you are still living, still experiencing life, still being a part of your family's life. Your life is not over yet.
You never know..miracles exist.
S
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Maureen, I am sorry that you are out of options. We will always be here to support you. I do hope you are able to stay comfortable with pain well-controlled. There are no words to relieve the emotions you are experiencing. I will be in the same situation if Adriamycin does not improve my situation. Have you had time to plan how you will be cared for? At home? In hospice facility? What options are available to you where you live? I feel that although people talk about choices, much of what happens is limited to what is available in each country and/or geographic location. Please keep posting so we can provide support to you.
I went for chemo on Monday. I had been notified that only patients would be allowed in. I am not strong enough to drive right now, so my dh drove me and sat in the car reading a book for the couple of hours I was there. There were many other people siting in their cars, too. The waiting room has signs on chairs to make sure people kept the 6 foot distance from one another. I was able to go directly to chemo room for blood tests so I skipped waiting room. I have so much admiration for all the healthcare workers who are putting themselves st risk to help others like me. Next week is break week for me.
Please stay safe. Pajim and Maureen, I think of you often and hope that your pain is well-controlled and that you find some joy in the days ahead.
Hugs and prayers to all from, Lynne
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Thank you all for your kind words. Emotionally, I am doing very well. But I had a very strong feeling that Doxil was not working and that my CT scan would show progression. I had known that Doxil would probably be the last treatment, so in essence, I was preparing for the prognosis for a couple of weeks now
Thank you Lynne - I truly hope that Adriamycin works, what cycle are you on and how have you been handling it so far? I will stay at home for as long as possible, my wonderful, strong DH wouldn't have it any other way. But it may become impossible at some point. I live in a smaller city, with only one hospice society and not too many beds available but if it gets worse fast, the hospital here is very nice and the nurses are wonderful.
Good night to all. Thoughts and prayers, Maureen
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you ladies are amazing
Lynne~ sending you love and hugs. I truly adore you.
Rabbit ~ hug my sweet friend
I am in awe of all of the grace and understanding you’re all filled with. It’s an honor to read your words.
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Lynne, I'm glad Adriamycin is treating the good cells in your body well. Hope they're killing all the bad cells. Maureen, I m sorry. Preparing for the TALK is different than experiencing it.
Yesterday I went in for blood work and shots. It was surreal. Same as Maureen -- only patients. In my waiting room case they took out a bunch of chairs, leaving the remainder 6 feet apart. I was in a wheelchair so it didn't matter to me.
When I got home I had a virtual consult with my MO. He has a lovely study! Anyway, we had THE talk. As with Maureen it's been coming.
So I have a decision to make. If I wish we can do Taxol. It may or may not kill my particular cancer cells, and if it does, at what price of feeling like dirt? MO started the discussion with "I don't think we can make you feel any better". Which is a really good statement and gets to the heart of things. At this point it's not about beating back the cancer (we can't really), but about making me feel as good as possible. It gives me something to anchor to. I'm not looking to live as many days as possible.
We're starting off with a palliative care consult and a visiting nurse. More treatment or not I do need some help figuring out what drugs to take when.
I'm leaning towards saying no to more treatment. My DH and I are off in our corners thinking about it. Then we will discuss and decide. MO wants to stop. He's got all the experience watching people die of this disease. He also knows what my goals have been over time and has done his best to help me meet them. His view weighs with me. My husband has not done a lot of thinking about what life would look like without me. It's not that he's been in denial, but hasn't looked at the big picture. We've been plodding along one day at a time for the last 5 months.
I've done a good job on the "living well". I'd like to do a good job at the "dying well" part but I have zero experience with dying. I don't know what to do or how to do it. I could go to one of the emergency rooms and catch Covid-19. I'd be dead within a week. :-)
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50sgirl, anotherone, Jaylea, GG27, pajim, RadagastRabbit, KBL, and SandiBeach you were all instantly on my mind first thing this morning. I hope each and everyone has found some joy in this day.
Pajim - my heart aches over your news. Even though we find ourselves at the same juncture, I think I would find it hard to make the decision between continuing treatment or stopping, for me personally I think I would have continued, unless the side effects where unbearable. My absolutely last and final treatment would have been paclitaxel but I don't qualify because it would kill me because of it liver toxicity. The decision has been made for us and therefore my poor DH has been forced to start the acceptance stage of grief, for me, I'm still numb. Oh, pajim you have had such a hard time since the abrupt ending to your overseas trip, and that was months ago now, you must be so tired. But I have witnessed your strength by reading your posts and know without doubt you will pass with grace. I hope we can support each other as long as possible as we navigate this....this? I don't even what to call this.
May we all have a great evening. Maureen
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Pajim, I know the talk was not unexpected, but it doesn’t mean that iitsoftened the news. Although I am tolerating the red devil, I would have stopped taking it if it increased my suffering or discomfort or negatively impacted my QOL. You and your dh are going through such a stressful time, trying to decide how to proceed. There is no wrong decision. Whatever you do, it will be right for you and for your unique personal situation. As far as dying well is concerned, it is something I have never really thought about. I guess there are two ways to look at it. Does dying well mean doing so relatively pain-free? Surrounded by loved ones? Peaceful? In one’s sleep? Or does it mean leaving life better than we entered it? If it is the latter, you have already reached the goal by living well. The world is a better place for your contributions. If dying well is the former, we have no control. We all die eventually, so I believe we all die well.
I feel that I am rambling, so I will end this now. I have so much to say but cannot find the words.
Hugs and prayers to all from, Lynne
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pajim, finally! Someone besides me thought of caronavirus as an exit strategy. I've been feeling so crazy for letting it even cross my mind.
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Thank you so much, Maureen. I feel the same and am thinking of you often. I come to this post every day to see how you’re doing. Virtual hugs to all of you.
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thinking of each of you ladies...
I am not at the same point in my life as some of you find yourselves right now. But the phrase dying well put an image in my mind...in October 2011, my granny was in the same bedroom where my grandfather passed away 16 years earlier. Hospice had brought in the hospital bed. My Dad and Aunt were in the room with her playing hymns/bluegrass and signing along, holding her hand. Granny was no longer eating or talking. Every once in awhile she would smile, maybe move her foot, like she was tapping to the music. The sight and sounds brought me to tears...mostly joy.
Death has always scared me. I’ve had plenty of time to come to terms with it now. What does dying well “look” like to you? What a fascinating question, pajim
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It is an interesting question, isn't it? I do know what it isn't.
No trips to the ICU. No intubation. They've already checked off the DNR and DNI boxes in the system for me at my request.
I had a friend who was intubated for 6 months before she finally died of her brain mets. No thank you very much. I also do not want to throw up every day for months either. And my cousin was doing intrathecal chemo up to 4 days before she died. She had small children so I guess I can understand but it seemed crazy to me.
My ideal death is that I run my office's manuscript meeting on Thursday, say goodbye to everyone Friday and Sunday, win the bridge tournament (online these days) on Saturday and drop dead on Monday. It's not going to happen of course, but that's my ideal. I do not want to be in pain (sedation is fine thank you) and I do want to say goodbye to those who wish it. One of our IT techs died of liver cancer. A colleague and I drove out to his hospice to say goodbye. Just a hug and a "goodbye Peter". He wasn't a close friend or anything but it brought me a lot of closure.
I have not yet refused further treatment. I need to have one more discussion with my MO. The lockdown causes problems. Should I die before the lockdown is lifted there will be a lot of unhappy people who didn't get to say goodbye. That would include my Mom and my MO. None of my family live in the same state.
Anyone else have ideas about what "dying well" isn't? [It's so much easier to describe. . .]
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Pajim, Maureen, KBL, Lynne - Sending virtual hugs to you all.
The best path through these final steps is still unclear even though I've known this was coming for more than four years. I hope everyone is able to hug their loved ones again before it's time to say goodbye. Worrying these days about how DH and DDs will do, but feeling this is just part of life on many levels.
I definitely need to update my checklist and passwords during this stay-at-home order. I don't know about you all, but I forget passwords all the time. There is no way my executor can get into my accounts to tie up loose ends unless I do that.
Hope the sun is shining where you are today.
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Iwrote, thank you so much for the virtual hug. I am sending one back your way.
I got the results of my tumor markers yesterday, and I'm really surprised. My 27-29 went down 62 points and my 15-3 also went down. So with something being seen on my omentum, the markers are still dropping. They're still quite high but dropping. My CEA went up to 7.3 from 6.0, but who knows why. My thyroid is off again, so maybe that has caused it to rise.
I now will wait until my next scan to see if they see anything else. I had to take an extra week off of Ibrance. My ANC was .84. I'm not sad about that during this time. I need my immune system to perk up.
Virtual hugs to all.
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Pajim,
I hope for a death that has a short preactive and active active phase. I suppose that is what everyone hopes for really. I do not want to linger long. I do not want my family and friends to stand vigil for days and days or weeks.
I just lost and elderly family member who I promised I would stay with until the end, which I did it. Her death was a difficult and prolonged event for all concerned. I hope for a steady decline, little or no terminal delirium, apnea or death rattle.
Ideally I’d like to be able to say I am ready now and that would be it. But that is not legal where I live.
When my time comes I want to be sedated as best I can be. If possible I want to know in advance when sedation / pain relief will overcome my conscious so I can say goodbye to those I love.
What I have seen and learned is unresolved issues can surface at the end and make transition uneasy. I believe it is really important to work towards being at peace with yourself, your life and those you love and care for.
I think I’m ok with dying but I suppose I will not know if that is true until such time as I am.
Thank you for the opportunity to share such personal thoughts.0 -
I've started to write about 5 times but can't make the words match the thoughts. Pajim, you said something that sparked a new set of thoughts, about the friend that you were able to say goodbye to and get some closure. I think about my brother, whose death was very quick (2 weeks after a pancreatic cancer dx), but held on for my other brother to make it to his bedside. And another friend from church who, while in and out of consciousness, told everyone to visit who wanted to say goodbye. So I will add to the 'good death' list the ability and grace to give others any closure they may need.
Helenlouise, amen to finding that peace.
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My MO feels that my liver will give out and I will slip into a coma. Right now I feel like my lungs are going to give out first. Then they just give you a lot of morphine so I guess its about the same outcome.
Don't you normally slip in and out for a while? Depends on how much pain medicine? I have zero experience with dying -- mine or others. It's always been at a very safe distance.
Today we decided on a plan which may keep me alive long enough for those farewells. Faslodex, Femara and low dose Xeloda. These are oral (except Fas which I just had last week) so if I feel bad I can quit. We'll see if that can be a stop-gap for a few weeks. Who knows? It's as good as any other plan we discussed. Each of us (MO, DH, me) contributed a piece of the plan so no one gets blamed.
There are a lot of people to say goodbye to. Not so many close friends or family but I've worked for the journal for more than 20 years. They've lived through 12+ years of cancer with me. If I die before the restrictions are lifted so be it.
One friend did point out that she wouldn't thank me for holding on if I'm in pain or suffering from air hunger or whatever. Better to feel good and not be able to say all the goodbyes than to feel like total crap. That concept was an eye-opener.
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