A place to talk death and dying issues
Comments
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Oh, Lynne, I am so sorry to hear this!!! and hope hope hope that Adriamycin works amazingly and that something useful in the way of a drug or clinical pops up after that. Thank you for all your insights and just take it day at a time till you feel better.
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Lynne,
I felt my stomach lurch when I read your news. I keep thinking of all of us eating lunch together. This is so hard to get one's head around; it's like a bad joke. No cure? We really didn't mean it! There is a cure!
I pray that the Adriamycin helps without causing you too much grief. I'm holding you close in my heart.
Much love, Mary Jane
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Lynne much much love my friend. I want to hug you and squeeze your hand and share silly stories with you. We are all here for you and holding you in our hearts. 💕💕💕🌈♥️♥️♥️♥️♥️
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Hi there, Lynne,
I’m thinking of you 💕
-Caryn.
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Well, I put away my shovel, and had my first infusion of the red devil yesterday. I passed the Echocardiogram and decided to go ahead with chemo , so far so good. I am taking the steroids today and tomorrow as well as an anti-nauseas med. if my WOL is adversely Acevedo by all this, I will stop treatment. In the meantime, I feel good. I am taking this time to clean out my closet and drawers to get rid of excess “stuff”.
I am concerned about my DH. He remains optimistic although he is fully aware of reality. The plan has been to have home hospice when the time comes, I am reconsidering that. I think it leaves too much work for the caretaker, my hubs and. I don’t want him to carry that burden. Of course my dh insist he wants to do it. Do I want him to have THAT as his last memory of me? Do I want to walk into the room where I die and have that hit him in the face? No answers here for me just lots of questions.
MJ, I ran across the pictures I took when you, Lynne, and I met for lunch and we made you an honorary Lynne. I also saw the picture of the three of us wit Claudia when the four of us met. I have good memories. I am in contact with Claudia. She is planning a huge adventure.
I will write again soon. Thank you all you your thoughts and wishes
Hugs and prayers from, Lynne
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Lynne, I'm thinking I would not want to do home hospice, not so much because of the walking into the room where I died but just because how much work it would be. DH would offer and want to but I would be wary. I wouldn't want him to resent me for working him to death at the end. I forget some of our husbands are old, too. Like mine. He has more and more age related ailments all the time. Just a big really hard question with no answer.
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Lynne— hugs to you. Hoping chemo turns things around for you.
I echo all the sentiments posted here to you. I have read your posts since diagnosed 3 years ago. Also found them to be caring and comforting. Your contributions have been filled with love and support. Now it’s my turn to give back but I am struggling to find the right words. I will say prayers for you and your family.
Red devil— kick Lynne’s cancer to the curb with minimal side effects to Lynne
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Lynne, it is good to hear from you. May all things work in your favor to find more stability with this disease. Always thinking of you. (((((Many hugs)))))
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Hi Lynne~. I agree with many sentiments from our bc sisters. When I first arrived on then stage iv forums 3 years ago frightened out of my mind, I remember your comments were full of wisdom and compassion. I will never forget your kindness.
I hope the red devil kicks that cancer to the curb and is super gentle on you. We are all here for you, whenever and however you need us. Sending loads of hugs and positive, healing vibes your way.
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Lynne,
Just learned your latest news, which you are handling in your signature gracious style. Now I'm even more grateful for your encouraging message to me yesterday. It takes a large and loving soul to reach out so sweetly to someone else at such a time. You are something else!
Thank you. I wish you an easy road with this new treatment.
Tina
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Lynne, I hope that the devil is treating you well.
As for me I'm now 2 weeks into Piqray. I feel much better than on Adriamycin but we won't know whether it's working for a bit. Meantime I am having trouble with fluid overload. My lungs go from wet to dry to wet and my feet are swelling. I see a cardiologist tomorrow to figure out what to do. (echocardiogram is normal) My MO thinks it's the cancer and not the Piqray. Though swelling extremities is listed as a side-effect. And if I'm retaining water my lungs are going to get some.
If this isn't Piqray, well, things are starting to go wrong. MO also cautioned me to take major precautions over Covid-19. We have an outbreak here but it's limited to a bunch of people who went to a meeting. But since they're not testing they really have no idea how many cases there really are. Guess I'll be mostly at home for a while. . .
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Pajim, I am sorry to hear about the swelling issues you are experiencing. I wish our reactions and responses were more predictable. I have been keeping up on the Coronovirus updates, and I have to admit it is concerning. I live in southern NH, so the occurrences in Boston are close to home. We actually met several years ago. I went to the MBC conference at DF and met you, Singlemom1, Aimee, and Lovesmaltese (Carol). Carol moved from Northern NY to Rowley ,MA. We kept in touch, talking on the phone and texting a couple times a week. We has big plans for meeting for yoga classes and lunch every two weeks, but it was not to be. I do hope Piqray is working for you.
This is my first day without steroids and anti-nausea medications. So far I feel good. I hope it keeps up. My potassium level was very low on Monday, so after having a potassium infusion , I now take a horse pill every day. I feel much better, and I hope the red devil works without too many SEs. I return to MO’s for second dose on Monday.
It struck me this morning how some things don’t change. Life goes on. My brother-in- law passed away the same day I had the talk. He had been sick with pancreatic cancer and several strokes during the past eight and a half months and had spent much of that time going from hospital to rehab to home. Some may say his death was a blessing, but his family cannot say that. Even more mundane things are happening. My vacuum cleaner died. Not good when I have a 7 month old puppy who is shedding. Laundry still appears, mud seasons comes, life goes on. I had ordered seeds for my garden before my downturn. I don’t know that I will be planting. At the very least I should be able to supervise. I am now more hopeful about the months ahead.
Right now I feel good. We took a ride to the beach yesterday. The puppy loved it, but she didn’t go near the water. It was only 40 degrees out there, but the ocean air has a certain appeal, strength, nourishing, calming effect on me.
I have many PMs to respond to. I apologize for taking so long.
Hugs and prayers to all.
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Ah, I remember now! Glad to hear you are feeling good. That's just excellent. Even better if it kills off reams of cancer cells.
Have a couple more hugs from me. . .
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50sgirl and Pajim, I’m not sure how best to support you both but wanted you to know I’m thinking of you both and hoping things move quickly in the other direction and SE are kind while they do so.I can offer as many hugs as you both want
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Pajim, I had huge swelling in both feet and ankles while on Adriamycin. Kept legs elevated.
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Lynne- I got a roomba for my kids and while not perfect- really helps the pet hair. Once per day or however you program it- it runs around vacuuming. Genius really.
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Pajim - I had tons of fluid retention around my lungs and in my legs and feet during chemo. My MO also thought it was the Cancer, but it did turn out to be a side effect of chemo. I took diaretics for the swelling in my legs and feet, which really helped. I had to have my lung cavity's drained at least 3 times with a huge long needle stuck into my back, because I literally couldn't breathe when I walked. It was not pleasant but also helped SO much. I felt so water logged I thought I was sloshing around when I moved, which only contributes to the fatigue, so I know how you feel. I hope you can find some relief.
Lynne - sending hugs and good vibes that the red devil does the trick. That is also what I was on when I had so much swelling... all of my SE's were terrible and I thought I was going to die FROM the red devil but lo and behold, I made it and my cancer "went away", so to speak. Hoping you have the same result and will be planting those seeds in your garden instead of just supervising! I plant tulips every year in the fall, and every year I wonder if I am going to be around in the spring to watch them come up.
XO
Andrea
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Lynne, isn’t that the truth, life goes on, even the mundane parts of it, even if we are grappling with complex matters. You have my sympathies on the loss of your brother in law.
Pajim and Lynne, sending you both some gentle hugs to let you know you’re being thought of.
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Lynne - have read many of your uplifting posts to others and i get just as inspired from your words as those to who you are writing directly. I'm sorry to hear of all you have been through, especially recently.
Pajim - i continue you hold you in my thoughts, ever since I met you on the Halaven thread. It is nice to hear you are feeling better on Piqray, and I hope your hips are doing much better as well. You have been an inspiration to me as well.
I have been on doxorubicin for 4 cycles now. However, Doxil up here, in this part of Canada anyway, is weekly. I had my CT this past week but haven't been given the results yet, I have not pushed to get those results either, my reasoning is....well it is because I am scared. I had such a great attitude about the prognosis up until starting Doxil. I pray daily and look for inspiration everywhere but miss that good old positive attitude. How are you able to keep positive? Friends and family still think I'm an inspiration.
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Kayla, for me I think I just naturally am a glass-half-full person. Everyone around me thinks I'm an inspiration too. It's because they can't imagine having to go through something like this. They don't realize that when you receive a life-ending/threatening diagnosis, the courage is there. If this happened to them they'd find their courage too. Because what's the alternative? Lay down and die?
Sure eventually I'll lay down and die. That time is getting closer. And now I understand why people are ready. I'm getting sadder and crankier. Parts of the body break down and eventually you're just too tired of fighting it off. And I don't think of living with this disease as a battle. I just hate that term. But in this case if I want to move I have to do exercises. And as of today if I want to move I need to take Percocet. I do not like it Sam I am. I do not like oxycodone.
I woke up at 3 am unable to breathe because it caused severe pain in my rib cage. Spent the day at the ER ruling out a few more things, including fractured ribs. This is apparently cancer/bone pain. Maybe. It's a diagnosis of 'the only thing left it could be.' Luckily it only hurts when I move. Even with percocet it's not clear I can walk. I'm certainly hoping this is one of those pains which comes and goes. But you know what? It sucks. I could really use a hug. DH has supplied several which have helped a lot.
Circling back around, I'm impressed you've managed Doxil for four cycles. And I hope for good scan results. You're entitled to be scared. I hope you won't let it paralyze you.
Lynn, I hope you're still doing OK.
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Here I am with a late night post. I'm getting to sleep later and later these days.
Pajim - I've noticed you to be an optimist and someone with a fantastic sense of humour. I too am closer and closer, but I still have some semi official tasks to complete, like changing my DNR forms, writing down, for my DH, who gets what for the family keepsakes, and I even want to take a couple more loads to donate to the local hospice society. The more I think of things to do, the more I realize needs to be done.
Even though liver mets are not suppose to be painful (so they say), mine have been since the beginning; tracking down the pain is how the mets were found. They have increased over the past several months my pain management to high dose Fentanyl patches, with dilaudid to handle breakthrough pain, I don't get loopy or anything but do suffer horrible constipation controlled by, you guessed it, more pills. As I grow closer to the end my doctors have encouraged me to live pain free for the remainder, I have to admit, my quality of life has gotten so much better since giving in and controlling the pain. I can't imagine your pain from the bone mets and the fractures you've suffered but i do hope they are able to increase your dose to control the pain, it helps emotionally too, my anger, frustration and patience are so much better
All the best, thoughts and prayers, Maureen
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Thanks. It's my first time with cancer pain. I've had surgical pain but have been lucky enough not to have pain from my mets.
Oxy really makes me loopy. And sleepy. Sigh. I'll figure this out -- it'll just take a few days.
Meanwhile, in an aside to improve your day, I sent e-mail to our ID editor about a lapse I saw in infection control practices in the ER. The billing lady handed me a stylus attached to her computer for me to sign a consent to treat. If she's not disinfecting that for each patient, and I saw no sign of it. . . He wrote back that he'd handle it and swatted me for going to the ER where I'd be in danger. "I'd prefer you stay home and address things in that format". He's a sweetheart and probably would have made a house call if I'd let him know, but I'm still giggling at his e-mail. Must be the oxycodone.
Hang in there!
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Pajim - As usual, everything you said in your post rings true. And I love the matter of fact way you say it. It never ceases to amaze me how we humans manage to adapt to damn near anything. As you said, what is the alternative? I didn't start out as a glass half full person, but living with MBC has turned me into one. I can't relate to living with this disease as a battle either, for me it's just living, playing the hand I have been dealt as best I can. I am SO sorry you are dealing with such pain and have to take those pain meds that you hate. And I hate diagnosis via process of elimination, especially when that process finds nothing. ABC? Sending you a big, gentle hug. Not sure a virtual hug really helps, but sending it anyway.
Lynne- Thinking of you this morning as I believe your next treatment is today. Holding your hand and keeping you close in thought.
Hi Maureen- I'm glad pain control has improved your QOL so much, but sorry for the awful C that comes along with that. Hope Doxil kicks some mutant cell butts and your CT results provide a nice surprise.
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I did have my second treatment of the red devil yesterday. You will probably think this is crazy, and it probably is, but after the nurse finished pushing old red, I felt motion in my liver, really weird. It felt like things were doing somersaults in there, no pain. I decided that the red devil was encountering all those mets. A girl can dream. I still feel pretty good today, probably thanks to the anti-nausea and steroids. My dh and I are hunkered down is our isolation mode. There was very little traffic yesterday. When we turned into our street after the appointment, we saw many people out for a walk. I am sure the were enjoy time outside in the cold fresh air. So much has changed.
Pajim, I can understand why your editor did not want you to go to the ER, especially in such a big hospital. Did they get you in quickly because of your diagnosis or did you have to sit in the waiting room? I wish you had a more definitive answer for the source of pain. I hope you are resting comfortably.
Maureen, I am sorry you are in this situation. I have to agree that freedom from pain is important. It is difficult to deal with pain when life is n out real, but when you have mbc in the mix, it is especially hard.
Like pajim, I have not felt that I am in a battle or fight. The tools to slowdown the disease do not come from me. I cannot teach in an beat up the disease. The tools come from modern medicine and since. I just do what I think is right and hope for the best. It has been part of my life for almost five years. It is not something I had a choice about. Where is the winner if this is a battle. The end will be death. What has cancer won? Nothing. What will I lose? My life, but guess what! I wouldn’t have lived forever even without mbc. I have thought more than once lately that when it’s time to go someone will have to say, “Lynne, time to lie down and die now.” I swear that is what I had to do for my dad several years ago. He loved and thrived in life, and he just wanted to keep enjoying it. So here I am, hoping for more time but not wanting to compromise my QOL.
I will have treatment again next Monday, then I will have a one week break . Maureen and pskim, my thoughts are with you. Thank you for coming here to share your lives with us. I wish this were easier.
ThNk you all for you kind thoughts.
Hugs and prayers from, lynne
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50sGirl, you have a beautiful gift of expression. You comfort others even during your own pain.
Thank you for being on BCO.
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Lynne ~Thank you for being you. You’ve touched me. Many many times and I adore you. Red devil onward.
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I should watch what I say about pain meds, as of yesterday morning I have been in a pain crisis and had to take so much opioid, it made me loopy to the point of nausea, I needed anti nausea meds to combat it. I'm still in pain but my new dose prescription should kick in soon. But tracking down the cause of the pain the doctor went over my CT and there is progression, my liver mets where not as grandiose as in past progressions but the peritoneum mets have had major progression. I haven’t even done any research on that type of metastasis because I was just so over this disease.
pajim - thinking of you tonight. I am curious if there has been any definitive causes for your painful ER trip and fluid retention, did the cardiologist have any input? I hope the pain has resolved, as it sometimes can. I hope you have a pain free and peaceful sleep.
Lynne - I always enjoyed those visuals when I got them when sensing the tumours. You bet a Girl can Dream! I love your father’s attitude...and here I am, virtually standing with you, hoping for more time.
Hopeeveryone has a peaceful night. Maureen
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Maureen, I am sorry that you have had the setback in point pain I hope your new medication plan helps settle things down. The news of progression was difficult to hear, I am sure. Will your treatment plan change due to that information? Please keep us updated as much as you can.
Hugs and prayers from, Lynne
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Good afternoon,
Thank you so much Lynne, your support is so much appreciated. My treatment plan will change, so no Doxil treatment today. My appointment for next week will be set up to go over plans. But I already know the only other possible treatment was paclitaxel, but to qualify liver function need to be very close to normal and of course mine are not. So, I'm not giving up hope but being realistic, I'm afraid this is the end of treatment. Coming to terms with it will be my next step and other than talking, or typing, through it i don't know how I'm going find my acceptance of it.
Thoughts and prayers to everyone, I've read so many threads, I feel like I know many members personally. Maureen
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hugs, maureen
Hopenyou enlisted all support possible
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