A place to talk death and dying issues
Comments
-
Jaycee, I’m so glad you are able to see the law you worked so hard for come to be. I am so sorry you’re suffering. I am giving you a gentle hug from afar and thinking of you.
0 -
Jaycee, thank you very much for sharing your decision and feelings with us. You have made a difference for so many. Peace be with you.
0 -
I hope I can be as strong and powerful when need be, like you did. I admire your honesty and you have definitely impacted me on these boards. I am sending gentle hugs. With a heavy heart
0 -
Jaycee, you are pioneering and courageous as always, and many take inspiration from you as we all hold your hand in spirit and keep you in our thoughts..
0 -
Jaycee,
I also read your post with a mix of sadness and admiration. I wish you did not have to face this difficult choice but understand how difficult things have become for you. You have contributed so much yo this Forum and with your work on the death with dignity laws. Your impact has been immeasurable.
Thank you for sharing your decision with us. My wish for you is that you spend these days enjoying all your favourite things and have peace and tranquillity throughout.
Embracing you in a virtual hug. Pat.
0 -
Janet, Not at all shocking, but crushingly sad. You write beautifully, and I'd be so interested if you wanted to share any drafts or ideas of what you will say in your letters of goodbye. That is an area where words have always failed me.
0 -
Jaycee, I am approaching your news with understanding and support but also with great sadness. i think its abundantly clear how much you are loved and appreciated in this forum. Your impact i truly believe is far more reaching than you think. I waited til after my scan to address this because i would of been waterworks on the table. Your honesty and your hard work to pave the way for the option to choose to die with dignity will no doubt help untold numbers of people. We walk with you as you enjoy the things you truly love and as you decide when to take the next steps.
0 -
I will offer you a gift of book recommendations. I just finished "When Summers in the Meadow" by Niall Williams and Christine Breen. Beautiful.
0 -
Jaycee, I love that book! Their writings about moving to Ireland are wonderful. Thank you for your honesty here, you are pretty awesome.
0 -
Jaycee - I admire your strength and courage. I pray you suffer no more and continue to live in peace. Sending hugs and many prayers.
0 -
Jaycee49..remember when we talked about estrogen levels and topical estradiol? Those were the days when sex was a maybe and a very, very slight possibility..ha.
I want to close my eyes tightly when reading how you are deciding to close out your chapter. You must be in horrible pain with your intestiine issues. I think you have been saying goodbye to us for a while, esp with yoiur extreme efforts to pass the Right to Die law in NM.
I guess I don't want you to leave, your comments are always point on. And I like how you keep challengiing your MO. He or she probably has "PIA" on your chart..Pain In Ass.
Your decision is your decision. I sense your pain with trying to handle the emotions of your DH, kids, family.
Wouldn't it be nice, if we can just press a button when our bodies are done, and it is over? Or just die in our sleep? We are so use to suffering..just sucks. All of this Stage IV crap..just sucks.
Keep us informed..or not. I can't imagine how you are thoughtfully shutting down your life. But you know, a few months being off chemo could be quite liberating! Just sorry your MS is messing with your GI tract.
We are here, if you want to talk..anytime..any topic
S
0 -
Jaycee, as many have already said, you are a valued presence here. Your candidness and thoughtfulness resonate, and I hope that you will continue share your thoughts and experiences with us.
Whatever the future holds, I hope for you to have peace in your heart. Gentle hugs.
0 -
Jaycee, thank you for your bravery and candor. You are an amazing presence here and I pray God's peace will encompass you as you make your final decisions. You are loved.
0 -
Janet, I’m hugging you fiercely. Thank you for your honesty, humor, and care. I support your choice and hope your doctors will be ready for you when you are ready to begin the steps. I also want to thank you for being one of the original women here to whom I looked to when I got this damn dx. You are one of my OGs. I’ll miss you but I’ll celebrate your time to fly free
0 -
Jaycee thank you for sharing so candidly always. You’re a powerful force to be reckoned with in the medical realm. You have encouraged me to question and advocate for myself better over the years.
Looking forward to reading more posts.
Tany
0 -
Jaycee, I am just stopping by to see how you are doing and feeling. You are in my thoughts.
Hugs and prayers from, Lynne
0 -
Ever want to say to DH, and where did you get your medical degree?
0 -
Jaycee49...miss your sarcastuc humor!. So..ummm..what is your faux doctor husband's medical advice?
My DD recently asked me to write down my preferences for when my chapter on earth is completed. Practical advice, but darn, I am procrastinating on purpose.
0 -
Does anyone still have that list that an earlier BCO member put together to help with tying up loose ends before you die?
0 -
I have it, but I didn't make note of the name of the original poster, so I'll PM it to you. I don't feel like it's mine to post.
0 -
Ok. I was able to find it. 50sgirl posted it from a woman named Bon...Thought this might be helpful to others...My 'when I die' bag has been hanging in our closet for several years now and my DH knows that it is all he needs to take with him to the funeral home and for handling issues for my death. The bag contains my white cotton gown to be buried in, a cross, photos want in casket with me, and a binder containing the following:
•copy of birth certificate,
•copy of social security card,
•copy of drivers license,
•copy of marriage license,
•copy of DD214 (military service),
•copy of durable power of attorney,
•copy of last will & testament,
•form from funeral home "Vital Information for Death Certificate & Transit Permit" completed except for my age to be filled in.
•form from state/county office of vital registration/records "Request for Copy of Death Certificate" completed for multiple copies and ready to mail with copies of husband & my drivers license and our marriage license stapled to (including Forever stamps on the envelope).
•form from VA.gov "VA Form 40-1330 Application for Standard Government Headstone or Marker" completed except for date of death and date for husband's signature, plus blocks 24 & 26 need to be completed by cemetery then it gets faxed to the Headstone/Marker Office at 1-800-455-7143 and to Scheduling at 1-86-900-6417 along with copy of DD214 for me and husband.
•a copy of the socialsecurity.gov 'Reporting the Death of a Beneficiary" information page where it states to call 1-800-772-1213 immediately to report death so that my SSDI stops and for one-time $255 surviving spouse benefit (the funeral home can do this as a courtesy).
•a copy of husband's union spouse's death benefit.
•My Burial Wishes signed by me (includes no autopsy, no organ donation, no funeral service, no memorial service, no obituary, no embalming, no extras, casket choice, in-casket items.
I have already made an extra copy of the above forms and highlighted what needs to still be filled in on the forms after I die.
I've already put everything and all bills in husband's name and so in addition to the above he will only need to contact automobile insurance, motor vehicle office, and bank. We don't owe anything now.
I've already given away all my possessions except my gold band of wedding ring and it will be on my finger, my clothes & shoes will be donated to Goodwill, and everything in my bathroom drawers shower will be trashed.
Could it be any easier for DH? ha!
I've said all along God really knows me, He knows how organized I am and how important it would be to me to make this as pain-free for DH as possible and for that am truly grateful.
ADDING MORE TO THE BAG / ABOVE LIST (from others' input, along with some more ideas that have come to mind that could be helpful):
•List of all banking/etc account numbers and passwords.
•Letters ready for all 3 credit bureaus to be mailed after my death so that my credit files are closed down - preventing identity theft. Letters are written and envelopes addressed and stamped but not sealed - have a post it note on each to add a photo copy of death certificate to each envelope before sealing.
•What you wish to happen to your pets. A relative or friend that is willing to take on your pet and have all of the pets papers (immunizations etc) and your notes on pets habits/likes/dislikes together in an envelope with contact information for the relative/friend.
•If having a funeral, photos of yourself with family & friends you want displayed at the funeral. Perhaps also have them scanned to a CD for online memorials. You can also make it a slide-show to your favorite music.
•If having funeral, list of your favorite music and burn a CD of those.
•If having funeral, a photo of yourself that you like the best for the funeral parlor to do your makeup and hair the way you like it.
•If having funeral, a 'how you want to be remembered' statement or a poem, etc you'd like read at your funeral.
•If choosing cremation, state where and when (you can pick a special day & time) that you would your ashes scattered. Or you can have your urn of ashes buried if you like.
•If choosing cremation, have a special urn made (penny4cats did this and will share websites about it), or you could make it yourself at a pottery place. If plan to bury the ashes, find a wooden box that fits the urn for this purpose.
•Any special friends or medical team members you want to thank, get some blank inside cards and write a note to them and have the addressed and place a forever stamp on them (so you don't have to worry about postage changes).
•If you have jewelry you want to go to certain people, give it to them now or on a special day in the near future, and tell them about the piece (who gave it to you, when, where, what it's meant to you), this is the same with anything really, give it now so that the recipient will remember that "you" gave it to them rather than you 'left' it to them.
•Don't forget your recipes - pass them on...maybe even make special recipe cards with "from the kitchen of (your name)" so that they will carry on forever.
Whatever you add to the bag, don't forget to add it to the list for your DH/loved one-in-charge (i.e., mail cards, mail letters to credit bureaus, take CD of music & photos to funeral home, etc).
****Also reposting these added items....
Someone may have already mentioned this, but just thought of it when updating a few addresses. Add this to you When I Die Bag:
•Complete list of everyone you want contacted when your gone, with their name and phone number and address. We often have friends that our family and other friends have never met. After passing, notification phone calls are made by family members or friends and having the address will help the family with thank you cards if needed. Also, if someone on your list has a name that is pronounced different then it sounds, write a note in parenthesis beside their name how to say it; i.e. Aja Jones (pronounced Asia).
•Complete email addresses for notification of your death (if you have friends that you have only ever communicated by email and never met). Put these into a word document so they can be copied & pasted into a email To line. (Or put on a USB jump drive for your bag).
•If you're going to have a USB jump drive, make an index for what items are on it and what the items are for. Print the index and place the index & the jump drive in a zip lock bag or if you do a notebook like I did, you can use a 3-ring binder pencil holder.
•You can scan in and save documents in pdf format and then save those to the jump drive, just in case anything gets misplaced there will be a electronic copy of it. Recommend using a separate jump drive for the photos and or music you want at your funeral, just so your private documents don't accidentally land on the memorial slide-show.
•Someone posted before that sending out thank you cards after funeral was too hard or never got around to it. In my small home town paper, I've seen a small business card size ad written by families to thank everyone for their prayers, flowers, cards, kindness, etc.
Your family history with all that you know...(such as maternal aunt died age 39 with breast cancer spread to lungs, paternal aunt died age 44 with uterine cancer, paternal grandmotherdied 93 after complication from fractured hip/osteoperosis and she had diabetes and HBP....)0 -
SeeQ. THIS IS AWESOME!
I am going to copy,paste to my WORD doc, then print.
I just love projects.
0 -
SeeQ, THANK YOU!!! I copied and pasted it into a Word document as well.
Some of what I've done already is to tell one of my knitting friends that she is to have all of my knitting stuff. I have a lot of needle sets that were not cheap and I'd love for her to have them - along with all the yarn I have stashed, pattern books, project bags, etc. She has a wonderful sarcastic sense of humor and we get along well. She's going to have a boatload of stuff to haul out of here.
My sister will come and go through all of my personal stuff and purge it for my husband. She's really good at that, and we went through my mom's stuff, at the request of my dad, when we knew my mom wasn't coming home again.
I also have somewhere (I think) notes for my husband, of people to let know - including my sisters here on this site. We have selected people as "hubs" to spread the word. For example, my college friend, Diana, to let all the other college friends know. Lara will let all the neighbors know (we're a tightly knit community). My sister will let all the extended family know (except for the crazy cousin that drives everyone nuts). And so forth. That takes the burden off of my husband to remember who to let know.
Carol
0 -
Carol, I think the call tree is an excellent idea and should relieve a huge burden.
0 -
Jaycee: I understand your decision but I am so sad. Like the others, I valued your wisdom and insight. You will be missed. I wish you the peace and comfort you seek.
0 -
Jaycee, Thank you for all your insight in helping me look ahead to the reality of MBC. Thank you for sharing you thoughts and wisdom. You have succeeded in making the right to die possible.
And yes my dh may have gotten his MD too. He could be a millionaire with this diagnosis. “Don’t worry everything will be fine”… most recently when the horse is out of the barn on a trip through my brain.
Peace Jaycee
Maire0 -
Joyce, Was just checking in and saw your post. I'm so sad that you have reached this point and I wish things were different for you. You are such a good person and I used to rely on your help with various decisions. I too, think you underestimate your worth to us. You have made me laugh, cry and at times, lots of food for thought.
I will hold you in my heart now and for the rest of my life. Yes, I have a spot for so many special people, of which you are one.
I'm not really interested in any more treatments. I listen to what the MO says, do research and so far have said no to all current options. I've had too many years of bad side effects to be willing to tolerate anymore. My DH respects my decision, my son, not so much. But at the end of the day, it's our body and our lives. I, too, wrestled with this decision, but honestly, each day has been a gift and I'm enjoying what's left of my life.
I'm sorry you are suffering so much and I wish you a peaceful end.
Love,
Claudia
0 -
Jaycee, not Joice.(sp)
0 -
I was here reading and sharing this thread/messages with my mom. It has been very helpful for her and I thank each of you amazing women for that.
She has not yet been given a prognosis is what we do not understand. Yes, we have been told it is advanced/extensive with innumerable lesions on her liver.
Her labs showed her tumor markers doubled in a month and were in the thousands on both. (Not sure what these mean in prognosis) - her CTC Cells were 39 per sample and her PET scan showed what the ultra sound did - extensive metstatic disease in both lobes of the liver but also showed upper abdomen lymph nodes also involved and recommended some other test to determine other locations it could be. Which I honestly thought the PET scan would show? But - we see a nurse tomorrow - not the doctor or PA and we have called and everything - so she is just not sure what is what at this point. Everything has happened very fast and she said her first round of treatments and dealing with Stage IIIB BC he was informative and attentive. She worries it is because she is so advanced and has very little time - but again, we are not sure. It has made her pretty down and feeling like she does not matter much. She did want me to ask if anyone else had experiences like this or was everything rather quickly taken care of? She is scared to try to find a new oncologist as he was her original one and she is already on treatment here. So as of right now - we do not even know a prognosis to begin to understand it.
And let me tell you - when I googled terms and results it is not a good outcome. Weeks/few months maybe. That is scary to leave me doctoring her! lol But with how the appointments are with treatments, labs and seeing the doctor it is not until August 5th she would see him....she stays in the bed 98% of the time and did before we found out - has had some weird sinus infection that sounds awful that has not been helped with steroids or antibiotics..keeps getting UTIs and I just feel each day things do not get better just a bit more tired - and she is a bit yellow and somedays it is worse than others, again it is odd since finding out it is like things are getting worse not better if that makes any sense. Then she will randomly be super energetic - it is so wild. ANYWAYS! Sorry for the spill! We are both just very curious of others finding out a prognosis. And we both know that you cannot be told when you will die and that many fight for years and do very well. But I am realistic as is she.
Thanks all in advance for any feedback. Best to all of you.
0 -
faroutstar, it is difficult to assess prognosis without knowing how she responds to treatment. What are the hormone markers? That matters. But no matter the markers some treatments work very fast on some people to clean up even extensive mets, or at least stop them spreading. Until you try it's hard to know who will respond well & who won't.
A lot depends on whether she is in visceral crisis (where one or more organs is failing) and whether she can withstand aggressive treatment.
Weeks/months is *untreated*. Treated like I said above really varies on response. Also, agencies have not really been good at tracking this data so we have to extrapolate from studies done on de novo patients, who do tend to have better OS than patients who develop mets after an early stage diagnosis. Nevertheless, it's a starting point. If you look at this study, https://bmccancer.biomedcentral.com/articles/10.11... & see Figure 3 you will see that OS varies by hormone marker status and location of mets.
I hope that gives you a bit more info to go on.
0
