A place to talk death and dying issues
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Rose and Devine
Thank you for the link. I knew her from taxol thread last year. I feel so sad another sister has left us. She was kind and generous. Courage. Blessings to all who knew her.
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Thank you, Brenda, for guiding us re-reading Calico's last posts here. They are moving, courageous, generous, saddening, and ultimately comforting. Great woman. Profoundly missed here.
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so sad to read of calico'spassing. I hope it was peaceful and anxiety free as she wanted. What an amazing woman. RIP dear calico. My condolences to her family and friends.
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I am so very sad. Calico was such a calm, graceful presence. May she rest in peace.
Rose.
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Thenews is heartbreaking. She sure was an example of grace and kindness. She touched my life through her posts.
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Well here's progress. State employees used to have 2 choices- Catholic Providence Health Insurance or Kaiser Permanente. Kaiser covers Death with Dignity Meds and Providence refuses. It's a state law amazing the state gives the contract to an organization that refuses to pay for it when medicare and Oregon Health Plan cover it. So I find out this year we have a 3rd choice- MODA. They cover DWD meds. Now to see if all our providers can be transfered to that plan.
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Rosevalley, I hope you can continue your providers under the extra plan now available. Iunderstand the DWD is a principle for you, but be careful with transfer if you will not be able to keep your major providers. Good luck and pain free.
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Rose, I appreciate your sharing the sad news of Calico's death the other day and your return to this thread. Hope you will have a good outcome in exploring your options with MODA. We all are more prepared when we know all our options and can choose what's the best fit for us.
DivineMrsM, I appreciate your sharing the link to Calico's obit. She was a very special person.
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Brenda- PCP's and all major specialists used by my family are covered under Moda. The breast cancer specialist- oncologist I have may not be covered under Moda I need to call. Wish I knew how long I would last. They never run any labs when I go in so I haven't any idea what my kidney function, liiver enzymes or H&H look like. The MO says Herceptin doesn't effect labs so she doesn't run any. I guess running labs to check my general state of health with malignant ascites isn't an issue - poor. All I know (because I specifically requested) they run the tumor marker is that it hasn't changed since July- 629. So the Herceptin and femara seem only to keep things status quo. There has been no reduction in fluid taken off - 2 liters on Tues. for instance. The rads may have dropped my H&H because my gums are lighter and I am more tired. But every time I take off 2 liters I get whooped. The fluid off is a lighter color then it has been, I thought that was interesting and I am not sure why. It used to be dark amber then it has progressively changed lighter amber. TMI.
On Monday I had rads to both hips, shoulder and right femur. I woke up with sciatic pain Monday and laying on the flat hard table for 2 hours while they xrayed and rexrayed only made it worse. So I have been flattened and house bound since Monday. It feels a bit better. Now my joints ache, but not the sharp shooting zap. I also have yet another UTI which I have lost count which one this is, but I wish they would treat it for longer then 5 days because it always comes roaring back. And don't ask about a repeat UA because the answer I get is no. I will not take any more bactrim after my gums and mouth got bright red and swollen for weeks. That's off the list. PCN causes rash and itching.. that's off. This sucks. Sometimes I wonder with the UTI's if there isn't something else going on - like some other cancer running in addition.
We have to make an insurance choice by Friday. All the rest of my family can keep their providers and need not change a thing. Frankly I am going for the DWD meds/ Moda saving my family big $$ and me major misery. If I don't make it to use Moda oh well Providence was the only choice I had anyway. If I get to use Moda at the insurance change January first, I save my kids' college tuition, no hospice misery, die where I choose and not at home. Oh yeah! Besides in the great scheme of things this Herceptin and femara aren't doing much and I have yet to read that anything kicks malignant ascites back. The Ibrance I got after the ascites was already full blown (not this MO's fault at all because I changed after my old MO didn't request a lab check on the ascites fluid drained during the first pericentesis- he only wanted the fluid drained off and thrown out - no labs, no cell testing, no identification); Ibrance will lower my white count and make peritonitis an issue with this Pleurx catheter so I refused to try it. I tried since January to get a hold of Ibrance but it got released too late. The Pleurx catheter is the only thing that makes life tolerable.Plus my markers flipped from Her2- to Her2+ and Ibrance is for her2- folks. I am still 100% ER positive. I refused Taxotere after what happened to me on Taxol. So I figure my choices are pretty limited by SE and what I am will to put up with.
My kids' birthdays are all in December and March. No chance of March, but I am worried about the Holidays. I want to see their birthdays and yet I don't want to mess up things either.. ackk.. such a pickle this is!! I never feel very good and this relentless pain is wearing me down.... ugh. The joys of chronic disease in cancerland. I know I have tons of company in cancerland and that just makes me feel more sorry for everybody else suffering too!
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Aww Rose. I completely understand your feelings. I believe you can make it to Christmas and I would shoot for April. Hopefully you will feel better in a few more days from the rads, that the SEs from laying on that stinking table will disapaite.
I think UTIs are very common. Lack of fluid, holding because it hurts to walk, lack of estrogen, our bodies design. I swear by cranberry. I take the pills, not the juice. I hope you find some relief soon.
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Zills- I have some of those cranberry pills too. I know with all my fluids leaking continually into my gut it is amazing I urinate anything or have any fluid in circulation. I was told not to limit fluids and I have been on a no added salt diet for forever. It was odd at the collection lab Quest Diagnostics she handed me a plastic drinking cup with a lid and no wipes. She said this is just a follow-up. I said," what just a dipstick for nitrites? I called and asked my PCP for this because my urine always has this smell of bacon when I am positive. This isn't a follow-up, there was no follow-up UA scheduled after the last one." I said," where are the wipes? I want them. This was supposed to go for C&S too", I added. She looked stunned. What good is a follow-up if it's not done correctly in the first place... then it's just contaminated. Stupid. Anyway I got the wipes and sent it off cloudy and smelling like bacon in a flimsy plastic drinking cup. WTH? After waiting 50 minutes with my legs aching in those stiff plastic chairs; my mood was the pits.
Quest Diagnostics also has a new business plan. They are now charging the estimated amount of the labs before they even draw your blood and making you pay for it upfront. I told the gal I met my deductibles and owe nothing, she said our new policy you pay first we bill insurance after! What a rip off! Quest Diagnostics gets paid before you even get the results! Your insurance company will take 6 weeks to process it and in the mean time Quest is paid by the patient. The patient who also pays for insurance pays twice, premiums and deductibles and then for the labs. It will be weeks before I get my money back. I mean I paid for the last UA and no check yet. I paid them 43.00 for labs and we have a PPO and met our deductibles. You have to hand it to them, it's a nifty business plan and they get their operating budget upfront using the private pay insurance patients as a line of credit and never have to wait for insurance payment. They also need gobs more staff.. every chair was full, folks with appointments were waiting, I waited 50 minutes as a walk in and just 2 staff. I will also vote with my wallet next time and have it done at the hospital. That will solve that. I was barely able to walk in there, too long of a wait to go anywhere else today. Clearly we need a single payer healthcare system where the overhead and admin costs are halved... now it gets processed, goes to insurance, back to the lab, they cut me a check ... so after all of that mickey mouse just how much money did they actually get to keep for drawing the blood, UA, labeling and processing? This is a stupid system that wastes healthcare dollars. Rant over.
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so difficult hearing the news of calico's passing. Condolences to all on this thread who loved her deeply. i hate this .... Saying goodbye-bye to yet another sister. Years of this takes its toll. It is way past time for more progress to be made towards a cure!
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Suersis- Yay!! Success! Isn't it heaven to get the fluid off? I would think having fluid restrict my breathing would be worse than ascites. So I am so glad it was successful. How on earth can amazon sell it used? Maybe a partial shipment to someone that they no longer needed. Not like they can return it. Well at any rate I am glad you got the catheter and it's working for you.
What kind of dog do you have? I used to love to walk my border and I can't do it anymore. Hips and legs can't manage it. Poor thing. I throw her Frisbees and balls, which is ok but not the long ambling walks in sunshine. I miss that and so does the dog.
Gatorgal- Calico was a neat person. I enjoyed her presence. I am sure she is enjoying being cancer free and that makes me happy for her.
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oh, suersis, I remember the great feeling when I had my fluid removed. Glad I've only had to have it once but what a relief it was. So glad you were able to have it done and are breathing easier.
Rosevalley, can't believe quest's new business model. My PCP does the same thing. I have to pay my copy even though I have met all deductibles. Then a few weeks later I get a refund check. What a waste of $. It seems with all the data stored on the computer they would know we have met our deductibles. I never get a chemo bill or oncologist bill after I have met my deductible. I guess they don't want to waste their $ printing and mailing bills. That makes much more sense to me.
Calico is one of many neat people I have gotten to know through BCO. I have kept some threads in my favorites so that I can go back and read some things written by some of those very special women. Zoh comes to mind, for those of you who have been around a while. So many .... Too many!
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Rosie, Thanks for the heads up on Quest. If they pull that here, I now know what they are doing. I'll walk out the door.
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Wow just read on the Death with Dignity forum that one of the founding Medical Doctors who worked tirelessly to launch DWD here in Oregon used the law. He had cancer and was just 70. Dr. Peter Rasmussen retired by the time I got cancer. I didn't know him. I think it was fitting that someone who by all accounts was a compassionate excellent oncologist/ pallative care MD, worked to launch the first Death with Dignity law for endstage patients and used that very law. Thank you Dr. Rasmussen. You don't have to use the law but it is there if you choose to and I for one am grateful! Peace to your family tonight and peace on your next journey.
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Wow, RoseValley, thanks, I may not have known or found out about that at all, except for you telling us! I am so happy to hear that he got to be a benefactor of a very compassionate and timely event. I am sure he knew well, how wrong it was for people to suffer way beyond what anyone anywhere should. Thank you for sharing, and I will be adding his name to my list of personal heroes..
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MmRosie the 3 times g got i it drained it wasdark amber
thetwins n my dd1 bd is in Dec. Actually we have all 12 months covered for bds. I decided I good till Feb. Just want to get it away from the holidays.
My breathing is getting harder and they r raising the pain pills.
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Blondie, I hope the increase in pain pills is helping you, I hope you don't hurt very much- no -not at all! I am sorry to think of you having hard work of breathing, I know how scary that can be too. I didn't know they had drained fluid from you. Hugs for you, and roseValley too
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Suersis- The Home nurse cut the valve off with scissors???? WTH? I have to ask you how that happened? Good thing they have the slide clamp. So was the nurse trying to get the transparent dressing off the catheter is that how it got cut? I am amazed. Good thing you were able to reattach the valve. I really think these pleurx catheters are pretty nifty. I do all my drainage now. I am glad you are more comfortable- that's the name of the game!
I love the name of your cocker- Coach. Cute. Coach is smart remembering all the treat givers! Glad you are back walking.
Blondie- I hear you about birthdays. I hope you get your wish. Glad the pain is controlled. Hospice sounds like they are keeping you comfortable. (((Hugs)))
Tomboy- It takes a huge amount of political will and determination to pass DWD laws because they go against what most folks really want which is a cure, a treatment that takes the chronic disease/ cancer away. Well until that time comes when we can kiss cancer away, DWD allows the terminal patient to choose to die when they think enough is enough. Huge communities of folks worked to make these laws a reality and it is freedom from suffering. Dr. Rasmussen was a local MO here in town who believed in it, worked for it and it paid off for his patients, everyone in Oregon and himself. Choice is a good thing. I like that you called him a hero and I think everyone who started this DWD campaign/law and made it a reality for those suffering are indeed - heroes. Eventually more states will pass laws like these because it is humane.
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I am a believer in Death with Dignity. My state, New York, does not have anything like it, but perhaps one day that will change.
After having about four weeks of no pain and increasing energy, things have suddenly changed for me. I am waiting to speak to my Hospice nurse about changing my meds as my Fentynal 50 patch is no longer enough. I have had to take increasinhg amounts of percaset for breakthrough pain and just added Reglan nausea medicine to see if it would help. I hope something can be figured out tomorrow as I am having trouble eating and cannot do much of anything but rest. I shouldn't complain as I have had such a long, lovely, comfortable period in which to get things done and simply enjoy life. With luck, I can get back to that nice feeling.
I hope everyone is doing as well as possible. I had read about Calico on another thread a few dyas ago and was sad to see she had passed as she seemed like an exceptionally nice person. I am glad that she is no longer in discomfort.
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When talking about Death with Dignity...DH's adopted GM Mollie (we named our youngest, now 36, after her) was dying in a nursing home at 93 years young. The nurse who came in to give her pain meds said, "You know, if she were home, I could give her just a little more of this & she would go in peace." That was about 30 years ago. I think hospice & DWD have good roots. I'm hoping for easy breathing & pain free days for all...being selfish...I'm tired of losing my friends here so I want the months to add up for all. But I understand what that entails, so I respect choices made. I think it's just so hard to not know what's happening when we don't hear from sisters...and I get that this is not where one needs to be when the end is near. My family doesn't have my password for bc.org...but they will when the time is right. Love you all & thanks.
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Suersis- You should report that cut catheter to the home health agency. My nurse had done the drainage before but I guess they get more of the lung cases then the ascites. I had watched the video and showed the fold out cheat sheet to her before we started. My nurse followed everything the video did except put 4x4 gauze over the catheter. She put the transparent dressing over the catheter and it looked fine. But when I went to take the dressing off to drain myself a couple of days later, the heat of my body and time had shrink wrapped the dressing around the catheter making it impossible to get off.. I had crumbled pieces of drain sponge and I was afraid of tearing the catheter. I had the nurse come out and carefully tease off the dressing. She did use scissors to clip some of the dressing. Then it was clear why there are 4- 4x4 gauze pads! Protect the catheter and keep the transparent dressing from sticking to it. Your nurse should not have used her scissors and no alcohol.. no clamp? She just let you drip all over? Make sure you tell your Doctor. Watch for any signs of infection. It is an easy system to use. I am down to my 2nd box and should probably get ordering. I love the instant relief.
Hortense - I am sorry your pain has increased and glad they will up the fentynl patch. My Dad had excellent hospice care where he lived in Sarasota. I hope your care is as responsive and thorough. After years of pain and misery hospice made him comfortable and met his needs. He was relieved as was my Mom. Do you feel hospice has been aggressive enough in treating your symptoms? Do they listen? I hope your DH can be an advocate too. It is hard to accept a narrow realm of activity as the cancer progresses. It is the hardest part for me. Accepting that I can not do what I did and accept that as part of growing older and having cancer.
I wish us all fortitude and peace. ((((Hugs))))
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Checking in to send my warmest regards to everyone here. I am very sorry that I could not provide with any specific advice for the difficulties you are encountering. But you, skylotus, Hortense, Blondie, Rosevalley, and anyone is in this situation, are always in my thoughts, and I am hoping everyday that you are comfortable and peaceful. Breathe slowly and deeply, singing music in the mind, enjoying every quiet sunshine, the fall colors, cool morning breeze .... Months are coming, years are coming.
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Ladies,
It's been awhile since I've posted, was reading and just there it was Calico had passed. She was such a person of strength for me during this journey. I found myself sitting down and having a good cry over the loss of such a wonderful person who truly had the most wonderful soul. I will miss her greatly.
For me these last 7weeks have been a whirlwind. I had to evacuate my home because of the Valley Fire here in CA, I've never felt fear like I had that night when in less than 15 minutes the fire was less than a half a block away. I was one of the lucky ones some damage but my home is still standing, however I look out my window with 360 views of burnt down tree and mountains, 9 of my neighbors lost their homes. Here is the kicker, because I'm on oxygen plus doing a chemo trial the Red Cross felt I could not be in shelters so I had to find a hotel for over two weeks, there were none by my home but one near Healdsburg not too far from my home and it was beautiful there. Unfortunately just one night sitting up waiting to find shelter or a hotel was too much for my body to handle. After four days the pain in my face was unbearable!
I had chemo the week before and everything was fine and my blood counts were great. Well I went to the Myofacial Surgeon and was waiting while there I got a call from my Onc and she said please go to the Cancer Center for blood work to make sure things have stayed the same. Well I went and figured they would call if things were not going well. Thank goodness I had to wait for hours to be fitted in to see the Surgeon, my phone wasn't working in his office area and my daughter went to go to the ladies room and there were all these messages. Here my blood count both red and white were so low and I was leukopenic my count was .003, the next thing I knew there were nurses rushing me in a wheelchair first to the Cancer Center and gave me a a Neutropenic shot and then was rushed to the ER. Four different bags of antibiotic and my mouth and nose infection was setting in a such a fast rate that if I had not gone in to be checked out I would not have made it through the night. I had emergency surgery right then and then a seven day stay in the hospital with bags and bags of different antibiotics until things got back to normal or what I call normal. They caught it before it went through my nasal cavity or they would have had to clear out all the tissue there and down my throat.
Then I've been dealing with my house and cleaning up after the fire. Which thank goodness for my daughters I had to do so little but that little seemed like mountains to me.
The good news is I had my scans they were stable, the trail I'm on is keeping things from getting worse, I still have over 25 lesions in my leg bones, spine, liver, lungs, lymph glands, etc., but no new ones since on this trial. Hopefully I can stay on this for the next year?
I hope all of you have a wonderful week. I'll check back soon when I"m not so emotional. I didn't realize how hard it would hit me with Calico passing.
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(((M360))) Sorry for the loss of your sweet friend here, yes, much beloved Calico is feeling no more pain.. I am sorry..And yet I am so happy for you that the fires didn't get you! Those fires were scary, and I wasn't anywhere near them. Fire in california just is an awful thing, they spread so quickly, and that one was an exceptionally bad one. And so glad that your daughter had to use the bathroom!!! My goodness, I think you don't get anymore trouble, for a year or more!!! Another (((M360)))..
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((((Hugs)))) M360 what a huge ordeal! Glad you made it through. May this treatment be uneventful because you have been through enough! Thank goodness you have your daughters to help you.
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Wow Suersis- I still think I would say something so nurse chop chop could watch the DVD that comes with the kit. I mean it's a great video very clear. I just think she should have more training - clearly. I am glad things worked out. I'm glad for the convenience of the pleurx but perplexed that sometimes after draining I feel very out of it. My belly just feels funky and uncomfortable. Sometimes the draining doesn't bother me at all and I am up and off. Today .. I feel icky and sorry for myself. We have family clay Sundays and I love going to these clay classes with my DH, DD1 and DD3. We are surrounded by happy creative kids and it's so fun. But I didn't feel up to it, so they went without me.
I definitely feel like cancerland runs the show these days, energy days and bad days. I had quite a few PMs with Calico while she could still chat. The multiple mets brain, liver and all were slowing her down and wearing her out. She showed lots of grace and love at the end. It sounded like hospice was good and supportive. She lived near Yosemite up in the Mountains, beautiful country. I am sure Calico is feeling mighty relieved to be free of her cancer ridden body! I know I will be happy to ditch mine. My kids, family and pets will be sorry I am gone, but I seriously can't remember feeling normal or "good" anymore and that gets old. I miss the big trees of our cabin and the old growth forest, we sold it this summer as it was too much to care for. I want to be buried under one of those huge old Doug Firs... just pull back the moss and dump my ashes. What a honor to be tree food for one of those giants... sucked up into the forest canopy and into the needles of the fir... watching a billion stars at night. Pax
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Rosevalley, enjoyed your post above with tears. I like that. I like the beautiful treatments of life and death with strength and depth. Haven't thought of a physical place for me to rest in death. Yours is beautiful. I wish I could still watch a billion of stars at night after death. There is a beautiful old white oak in our yard, not far from the house. But I am sure the home will be occupied by other people eventually. I sometime wanted to join my parents who were far, far away. My mother died rather young of brain cancer. I miss her very much. But there is no space anymore there in the graveyard. Probably just have my husband carried me. I will be with him forever either here or on the other side of the world.
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Xavo- Sounds like you and your DH will be with each other forever no matter where your physical bodies end up. It must have been hard to lose a Mom to brain cancer. I didn't mean to make any tears.
My one daughter understands my fixation with trees. She told me if she ever had a tattoo done in memory of me it would be of a pine cone or fir tree. We had our weddings bands made by an artist, woven oak leaves and acorns in a bumpy natural band of gold. It takes oak like strength to be married with kids. When I was in high school I remember walking through the conservation area of Swarthmore College. there was a large tree that had been struck by lightening and ripped apart. I remember such sadness and awe and leaning my face against the wood, wet and sweet smelling. I hugged that tree. I have been in love with trees, drawing them, admiring them, listening to the wind through the canopy all my life. When we moved to Oregon it was tree heaven. Oregon grows the biggest, hugest most gorgeous Doug Fir trees anywhere! They are magestic giants, crazy tall and lovely. What better resting place for a tree lover then an Old Growth forest with the sunlight streaming through the trees!
I wonder are there others that have places where they wish to be buried? I have heard folks wanting to be buried at sea. My Aunt and my cousins took her DH and scattered him a little bit at a time in all the places he loved. They laughed, cried and thought how much fun they had had in each spot, pretty wonderful memorial I thought.
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