A place to talk death and dying issues
Comments
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Calico, that's a great idea; and I will look into it. My baby is so used to being loved, especially by me. I try to get him to attach to my mother a bit, but that's really not working. He does like to whistle to her, though. I'm just going to actually come out and ask the people who have crossed my mind. I'm going to have to look harder. I know I have a long way to go with the chemos and hormone blockers and whatever else they come up with. However . . . ....... ....
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I think my pain is finally settling down and possibly sleep will soon follow. Tomorrow I will find out if there were any problems with the xanax. The doctor didn't seem to mind renewing, which is great, but now I need to pray that insurance or govt regulations won't keep me from getting the renewal now. I have needed to take extra the past few days, but especially today. I'm going to be in a really bad way tomorrow if I can't get more. I'd probably hit the streets. No. That would be stupid.
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Ativan (like Xanax) was just automatically prescribed by my onc when I went through my first chemo 8 years ago. I didn't use much of it, but was glad it was there. When I was NED, I got super stressed with all the surveillance and asked my GP for it, and he was fine with that. The only time I take it now is 1/2 a pill at night, but when you need it, you need it.
xoxoxoxoxoxo
Calico
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Calico- You made me laugh I can totally relate about the contacts and how long am I going to live vs the money spent! I have a large chunk off my last molar on the bottom left. The Dentist wants to put a crown on, since the patches keep falling off. No way I am spending 650.00 to have to fix it and then have it cremated... that's like almost my kids camp fees. Heck I can get cremated for 700. So I refuse. Leave it. It doesn't hurt, kind of rough on my tongue. I have a kid in college and there are all these bills. I don't know why the dentist can't just put a silver filling in and leave it. The dentist makes a face when I adamantly refuse, but it's a stupid expenditure. I just don't want to spend money on myself. I have a lovely crop of mouth ulcers along the inside of my lower lip.. owie.. Then diarrhea all afternoon.. my intestines rule my life. I am not even taking anything... whatsup with that? The joys of cancerland. I need to get something stronger for pain relief.. extended,not the fast in fast out stuff. I must begetting used to it. Nothing works as well as before.
I hope you aren't getting a cold. I had the flu and a cough for over 2 weeks and finally ditched it, miserable. Are you tolerating the halaven? How many more doses until they check to see if it's working? That was a rather miserable way to find out about the cremation and your Mom heading to hospice. Geez no one told you before you heard it from the funeral home. That's pretty lame of your siblings. I would be hurt. I wouldn't have been a Suzy sunbeam with all that going on. Matter of fact had Emmy not been totally entertaining with her bird antics, I would have been a "grumpus whumpus."
Dune there are many bird rescue groups who will look hard to find a rehome for a cancer patients pet. If you have good bird vet ask him if they have a notebook or file for people looking for birds to adopt, maybe you could post there and interview new owners. You will have to look around. Birds live a long time and require a loving commitment, I wish you luck. Dusty sound like a rel gem. Night all.
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Well i have an appt on monday 4 hospice, the mo thinks that can get/qualify 4 services being onbit. We shall see
Oh about my eyrs watering he said take claritin it worked...
Bb games tomorrow.
What about u whatcha doing, the weekend.
Since hospice i think i need to dtep it up n have more fun, time is running out.
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Blondie- I think hospice is a great idea, more services and better symtom control. I hope their hospice rocks. Have fun at the baseball game! Hope the weather hold up and you enjoy yourself. Ask for what you need and want!
We are off to the cabin. Need some spring cleaning and fixing. Air the place out. My heart is playing games this morning heart rate 139... I really think I go in and out of A-fib. Strange sensation, like my heart is peeved and complaining. Nothing new been doing this for years. Think I will have DH drive, winding roads along the canyon and there have been some times I have gotten very light headed - once had to call DH and come get me..too dizzy to drive. Had so much pain/ aching yesterday..miserable popping pain pills like M&Ms. It's better today.. whatsup with that? Fun and games in cancerland.
Be well as possible folks.
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I don't have anything to add, but wanted to say how much these posts moved me. I'm not in that place with my cancer, but after my biopsy and before my diagnosis, I remembered wondering what it would be like to have a doc tell you that you had limited time left on earth and how would someone cope with that kind of news. I'm very sorry for what everyone's going through. It's so unfair.
God bless and hugs
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Hi, Blondie, I hope hospice will work hard to keep you as comfortable and pain-free as possible!
I was supposed to go to a conference this weekend in San Francisco, but the "crud" got me. Fever and major cough. NP at oncologist's office prescribed a Z-Pack. Lousy timing for the crud! I know I'm sick when I don't eat dessert!
I've slept most of 2 days. Rosevalley, I get 2 more Halaven and then have a PET scan, BUT I'm having a brain MRI next week because of the lack of feeling and strength in my left hand. Really makes it hard to type. It's probably coming from my neck, but onc wants to check out brain, too. I think I'm tolerating Halaven pretty well. I can't really point to anything I think its giving me in terms of SEs.
It would sure be easier if the rest of the symptoms of "as we get older" would halt when we got BC!
Hope everyone is having an enjoyable and peaceful weekend!
xoxoxooooo
Calico
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Hi, to all. Continue to think of you, to appreciate your posts, to hold hope that each day brings you all the moments of joy, beauty, and comfort that are possible.
Blondie, I hope all will go well with your hospice appointment tomorrow. Many people who choose hospice find that their quality of life improves given the focus on effective symptom management and holistic care. I'm expecting that you will be one of them!
Dunesleeper, if the folks you know aren't interested in adopting your sweet bird, your local humane society may know of people in the community who love birds and might be willing to get to know your bird before the time a transition is needed. There is no bird sanctuary in my area, but people who go to nursing homes for care or have other situations in which they can no longer care for their loving animal companions often call the humane society for help with placement. Good luck. I know how important this is!
Calico, how sad that you heard about your mom's potential admission to hospice via the funeral home! I would have been unsettled, to say the least. I hope she gets all the tender, compassionate and expert care that she needs and deserves from the hospice team. Glad you are not having major side effects with halaven but sorry to hear about the crud and increased problems with your left hand. I hope the antibiotic and rest have worked wonders and that your brain MRI will reveal no new surprises.
Rosevalley, totally get your perspective on the dental issue, given that it doesn't hurt. I hope you ARE willing to spend at least a little money on yourself for your comfort or whatever you find gives you joy in life! And I hope your plan to get something long-acting for pain will work. Sounds like you need a break! Sorry to hear that your heart and intestines act up so much. Any chance of getting some relief there, too? Hope you've enjoyed being at your cabin.
My energy has been woefully low lately, but I keep plugging along. How I wish I had understood better about how all my treatment decisions would affect my heart health. Sure, some of the decisions I would have still made, but at least one or two I would not have made. I know that medical literature cautions that cancer treatment may one day cause us to experience cardiac problems, but often that literature is so vague. The research I'd done did not prepare me for my actual cardiac experience, but perhaps that was just not possible. It's interesting that once you are diagnosed with mets medical providers tend to focus most on cancer and forget that bodies involve more than just cancer, stability, progression, etc. Of course, I am grateful for all that is working well, and I try to focus on that, but sometimes it's most challenging to deal with what is not working, as you all know. I am hopeful that I will always practice gratitude. It's one of the main coping skills I have now.
Here's hoping for the best possible week for all of us!
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Thank u brenda
I know u make a decision for 1 thing hoping it won't lead 2 another problem there.
Have a good week
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Brenda true- I am sorry your energy is low and you are suffering with heart issues. Yep I agree with you the doctors treating cancer sometimes forget there is a body attached! The other systems get slammed in the wake of the cancer drugs - like my peripheral nerves being ravished by taxol which also destroyed the feeling in my bladder, heart weakening, fast heart rate/ poor endurance after adramycin. My endurance and energy level has never been the same after ACT. If I had known how negatively it would effect my life I never would have taken it. I would have stuck with hormonals and saved the miserable chemo for last - if ever. Now I am so scared of chemo - I would rather just check out then try it again. They lied so totally about what it would do, and the cancer came back anyway. The intestinal issues have been life long, made worse from these drugs. I kind of feel like my body is just breaking down and wearing out... "the ship is breaking up captain!!" Ha haha.. star trek.
Calico let us know how the MRI of your brain turns out. Petitions and prayers for everyone's well being and pain relief. There are some birds singing their little hearts out - right outside our open windows! So lovely and sweet. It was almost 80 degrees and sunny today - all the flowers blooming. Smells so sweet! We ate out dinner on the patio to bird song and butterflies and flowers.. sooo nice. Except our border collie Tess putting slobbery balls in our lap - it would have been perfect!
Hugs Blondie. I am glad the microwave dinners are helping and you have cookies and chocolate and hospice for pain! Blessings to all of you and the poor folks in Nepal.
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Beautiful, beautiful Oregon . . . . . .where you actually have . . . . . . . PRECIPITATION!!! We've had 2" in 2 days in the foothills of Central California. Whoopy!!! Declare the drought over! (NOT)
I lied, Rosevalley, about no SEs from the Halaven. My left leg/ankle swelled at first on Abraxane, continued on my lousy 2 months on Doxil, but now that I'm on Halaven, the right one's swelled, too!! Oh, well, at least now they match!
OK, enough out of me tonight!
xoxoxoooxoxo
Calico
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Just finished watching Public Brodcasting on the final evacuation out of South Vietnam. It's so surreal since in 1994 my DH and I were in Vietnam picking up our DD oldest from an orphanage in Can Tho, South Vietnam. I recognized the Catholic church in the square and the market place. I have walked through there. The footage of those folks left behind to wait for the North Vietnamese, their fear, panic and no where to go written in their faces. Their country torn apart. When we picked up our daughter, there was less friendliness in the South then in the North.. US betrayed them by leaving. They did not forget. I love my DD and her country is beautiful and bittersweet. Cancer is a very hard road but many folks in many places have hard lives and very difficult circumstances. Like Nepal right now. Guess I am feeling very philosophical suffering is indeed universal. People cope with such strength and grace.
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Beautifully and wisely said, Rosevalley. I was a teenager when the country was coming apart at the seams over the war. I expect many of us were. It cast a pall over my youth and my belief in America. Old men determinedly sending young men off to war. Anyway, I'm sorry if I'm offending anyone. My husband was there. Such conflicted feelings. Yes, suffering is universal.
I had my brain MRI today. Results on Monday. Maybe it will explain why I've lost the feeling/strength in my left arm/hand. I really think it's from my neck, though. Neither is good.
xoxooxoxoo
Calico
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Calico- ((((Hugs)))) May your results come sooner, peace until they arrive. I would miss feeling in my hands, as I am sure you do.
(((Hugs))) to all of you. My Great Grandmother embroidered a saying that I have framed in my DD bedroom. It had been in my bedroom growing up.
To all to each a fair goodnight with peaceful dreams and slumber light!
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I hope you all have a nice day. My port was implanted yesterday, and my shoulder feels like it has been the victim of a bullet today. I get my xgeva injection in about 3 hours, and I'm trying to decide whether to go to Hopewell to learn about making plans for death or to come home and play with my 3-year-old great nephew. He is exhausting. I hurt. For today o I choose life or do I choose death?
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Hi MammaRay. I'm sorry to hear about your port getting infected. Obviously I hope that doesn't happen to me. I will treat it with respect. I guess I have had about 7-8 xgeva shots. I have had no complications from them.
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Dune- I know it doesn't seem like the port will be your friend right this minute since it is new and hurts. Give it a chance to heal. I have had mine in since August 2013. No issues. It's a power port and works great. Beats being poked over and over. It will feel better after a week! Maybe pick a middle path of a little rest... little guys can be exhausting and fun too! Sounds like you need some ((((Hugs)))).
Good luck with the xegeva both of you.
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Next time I get xgeva it will be through the port. What's a power port? I only know that mine is purple. Well, purple was the color of the port the surgeon showed me. My gosh. It is suddenly so quiet. The little guy left and the silence is deafening.
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My port is still in got it march 2013..
Went on hospice today, was alot to deal with, wow that is all i got..
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Can you tell us what it is like to bring in hospice? Does it relieve stress or cause more of it? I love you Blondie and will be thinking of you.
Charlene
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Blondie - I hope you get the very best care with hospice. You're quite a lady, you've got all my admiration. I love you too. Big hugs coming your way from Quebec.Linda
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Blondie - hope this relieves some stress for you - we're all with you and I'm sending you hugs, S.
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Seeing you whole and healed from your port implantation, Dunesleeper. Is it, on average, better to have a port. I had to get one when I started Navelbine. For some reason, that drug made my arms hurt terribly, and the nurse had warned me about that possible SE. The SE totally cleared up after getting the port.
xoxooxoxoxox
Calico
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Hi, ((((Blondie)))), seeing you helped and comforted immensely by hospice. Prayers flying your way.
xoooxoxoxo
Calico
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Thanks so much 4 understanding
It was a long day yesterday, n cause i am basically alone it is harder. My kids dont know cept 4 georgecause he is here, the others r busy, wont bother them but it will b a shock when i get sicker, they live in the area also. It was scarey, honestly knowing after 5 years i am at this point which we have talked about. The nurse cames yesterday n today, gave me a brochure. Told me to do what i want to do. My mo said cant go to the mall on hospice cause u r supposed to b at the end, she says different. Going to my dd bbaby shower tomorrow. Nurse ordered stuff 4 me, pull ups, oxygen needs, meds will b delivered. Social worker will come mondat, they have an ex priest that does counseling.
I know i am not going anywhere soon, but know it is coming is strange, ifvthat makes any sense.
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Your onc is goofy.. you can go anywhere you feel able to go! The nurse was right. I am so glad you signed up since all these troubles you had, no car, no way to get meds and groceries can now be addressed. They also have counseling and someone you can unload your fears to! All covered and they should go to you, you don't have to come to them. Your O2 and oxygen needs will be organized and delivered.. much less hassle for you and better organized since youlive alone. I totally get that it must feel weird that now you are in hospice but it's going to make life more convenient and comfortable for you. Use it! They say folks live longer and better with hospice.
Enjoy the baby shower tomorrow! See what legacy you have! Remember we don't die - just change. (((Hugs))) love to you.
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Thankss
I know,his family is having the shower n didn't really invite people...i am b eing nice don't want to go, can't stand him nbhis family knows it
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Calico, I think it is better to have a port. From what I have read on these threads, the drug can really mess with your veins at the point of entry. (Who knows what it does to your veins during the rest of the trip?) Since I have, or had, lymphedema in my right arm, they can only use my left arm for blood draws, and that has only one good vein in it. My last blood draw left it bruised, so they had to put my iv in my wrist for the surgery. Ugh. That hurts. It will be easier for them to hook me up for treatment and even access my veins for a blood draw through this "power port" which is purple: a purple power port. HA. I'm pretty sure it is going to hurt on Monday, though, because it is still healing. It gets painful without being stuck. However, in the long run, I do believe it is the best way to proceed.
II hope you are feeling comfortable and comforted Blondie. If thinking about dying is strange, then I'm strange too Blondie. Sometimes I get down right afraid. Then, when my pain is really bad, I get a sense that I will come to fear it less. Anyway, I try not to let it take up too much space in my head. It is a good idea to live while I am still alive. lol
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Speaking of death and dying . . . . . . . . We had to put our eldest cat Sinbad to sleep today. We'd had him since he was 5 weeks old (his mother abandoned him) and he was 13. He developed a neurological problem pretty much overnight. Don't know what it was, but he could only move his head.
So many continuing losses, one after the other. When I was holding vigil with Sinbad this morning, I could see both him and the Buddha statue in the garden at the same time. It seemed so apropos.
Thanks for being here.
xoxoxoxox
Calico
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