A place to talk death and dying issues

I haven't posted in a while. Things are not going well. My bone mets have progressed rapidly and widely. A great deal of pain, for which I wear a fentanyl patch (I'm up to 50 mcg now, started at 12 last fall). My tumor markers dramatically rose, and they've never been outside of normal in all these years. Also my liver function is, for the first time showing up in trouble in my blood work. Learned all this in last two weeks. I'm nauseated, losing weight without trying. This is all different from how I've felt, so I truly believe mets are moving into organs. The PET scan 2 weeks ago revealed to soft-tissue mets, one on back and one on the posterior side of my sternum. At least they were able to get a really decent soft-tissue sample to do genomic testing, which I've never had done. I tried one more cytotoxic chemo (Gemzar) a month ago and couldn't tolerate past the first month. I will not do any more cytotoxic chemo. However, if the genomic testing matches me to something in trial, a targeted therapy, I will definitely try it. MO says without attacking the mets with chemo or other drug, I've got 6-9 months. No one has ever given me a prognosis before (it's been 9 years+).

In the meantime, I'm getting my affairs seriously in order. Putting all household functioning in my wife's name and teaching her how I've managed bills/family $. Saying everything I want to say to the people I love. I'm going to establish residency in Colorado this summer, moving into my sister's house, and use a local hospice and take advantage of MAID (medical assistance in dying). I just helped my elderly mother die this way in April, also at my sister's house. She was so tired and ready to go (lung cancer). It's a 3 week process, once I'm a resident, to be evaluated by an MD and have the prescription written. So we fill the prescription and have it on standby (it's an oral cocktail). I know frommy Mom's experience that the hospice nurses are so very tender and gentle, and the whole process can be loving and calm and sweet. I really like having agency about WHEN I'm going to die of breast cancer.

To top it all, we had to put our ancient sweet dog down yesterday. The last couple weeks he's been letting us know it's time to go. Feeling loads of empathy for him. And his death was as sweet and gentle as Mom's. This group has been great to follow. I wish you all well.

Pearlgirl, thank you for sharing this difficult news with us. I am also sending you gentle hugs, and completely agree with your statement, "I really like having agency about WHEN I'm going to die of breast cancer". I hope that everyone in your life treats you with gentleness and sweetness.

pearl-girl,

Thank you for sharing your situation so honestly and eloquently. I wish I had some great words of wisdom but even after a decade here and being all too well aware of our reality, I will simply wish you peace

pearl-girl, I have no words, except to say I'm so sorry. I wish I could give you a hug.

50sgirl, wow, talk about a roller coaster. You're basically told that there is only one Hail Mary left for you. It works, then it doesn't. Another Hail Mary... Happy birthday to you! Please don't stop posting but DO stop thinking that your posts are not helpful. They are helpful. I'm here almost every day. You and the other ladies are my strength. You all GET IT! Even if all we have to say is, "that sucks!"

Carol

I feel your caring 50s girl and always look forward to your post

Happy Birthday 50sgirl! Hope you are having a wonderful day. I look forward to your posts because you always seem to have the right thing to say. Sometimes I don't respond to someone who is struggling or in pain because I just don't know what would be helpful-but you always seem to find the right words. You are deeply appreciated here. I hope that your MO continues to pull magic out of his bag so that you can enjoy more birthdays!

Happy belated birthday, 50sgirl! I am another one who is always happy to see your posts!

50’s Girl— happy belated birthday!! Miss seeing your posts. Hope to read from you more often.

Again, happy birthday!!

Pearl - I just read your post and I wanted to let you know that I am thinking of you and your family.

Lynne - You my friend, have been a rock for me! Whenever we talk, we laugh and cry sometimes, but I always feel the love. Always. I too have stayed away for many of the same reasons as you, but I can tell you that when push comes to shove, I need you and this wonderful group!

Not to write a book but on April 20th, I collapsed at the dog park . Friends came and got me and my dogs and I ended up in the ER. What I thought was a slow recovery from pneumonia ended up being pleural effusion that had gotten worse. I was in the hospital until Saturday afternoon. During my stay it became clear that I am going downhill and my palliative care doctor said it was time to bring in Hospice. He said that there is a chance I could rally, but until then I need Hospice. Several weeks later, I think he made the right call. I am on oxygen at night and some days. My mind keeps telling my body to get better, but it's not listening. I came home with a renewed will to fight, but today I am facing my bodies lack of cooperation.

Our son was here with his family and they took care of the few unfinished legal issues that I had left to deal with. We were able to spend quality time together and make a few more memories. I am very grateful for that!

I wanted to tell everyone here how grateful I am for you! You have kept me sane and helped me deal with side effects of different treatments. The kindness and compassion found here is a Godsend for me and for others.

Thank you,

Claudia

Claudia, my heart is breaking for you. Wrapping you in a gentle and loving hug. Cancer sucks!

Carol

Claudia~holding you close in my heart and in my mind. Hugging you gently.

Claudia, it is nice to see you posting although it is unfortunate that it is on this thread and about this subject. You have been and are such a good friend to me. I am so blessed to have met you and spent time with you. There have been times when I have hesitated to call you because I had no good news to report and I would tell myself that I would “just wait until things improv. “ I now wish that I had called every time I thought about you. Well, maybe not EVERY time since the phone would have been glued to my ear. Of course when I did talk to you, I didn't want to hang up. You are always so supportive.Sometimes I would laugh so hard the tears would stream down my face. We do share a weird sense of humor. As you know, Jim and I have spent most of the last two years at home. You and Jeff, on the other hand, have followed your dreams traveling around the country, riding your horses though the mountains, making new friends, and seeing the beauty that surrounds you. I admire you so much for that. I thought you would be able to do that for many more years. I still hold out hope that your body will follow your mind's thoughts and you will rally. In the meantime, as you know, my love, thoughts , and prayers are with you. You are a dear friend. I have to add that I really hate mbc.

Hugs and prayers from, Lynne

I am feeling sad these days about the loss of so many of us. It is hard to talk with people outside this group about it, because they don't know any of the people I am talking about, it is hard to grieve alone- ShetlandPony was someone I was particularly close to so her loss has been really hard, we privately emailed a lot so knew it was coming but, the finality is so hard. so many other losses lately and also all the people that I don't know what happened to who just disappeared. The suddenness of some people's death- I know it is a crapshoot and none of us know if we will be here tomorrow- But, BevJen seemed sudden.

Also 3 new people in my world now have breast cancer!

so sad

nkb, It truly is a sad time. In addition to the people we know have passed, there are so many others that just drop off these boards. It seems to happen more frequently these days. Several years ago, it seemed like we were able to keep in touch a bit more and kept aware of how others were doing. Maybe I am mistaken. The losses are definitely hard to take. I try to focus on how the people we have lost were able to enrich our lives and brighten the world while they were here. If I don’t do that, I feel like I am failing them and focusing on the sadness of their deaths rather than the joy of the lives. I do not trivialize the losses which are painful, but it helps me cope just a bit. It has been more than 7 years since my mbc diagnosis, and I have lost so many friends here. The tears still flow with each loss. I sometimes wonder how I am still alive when so many others are not. There is no explanation. I hope and pray that more effective, long-term treatments (or dare I say cures) will come soon.

I hope your three friends receive effective treatments with few or no SEs.

Hugs and prayers from, Lynne

I am also in a MBC Facebook support group and the losses there are gut wrenching. We also have so many very young women with this damn disease. It was hard enough getting dx w/stage 2 breast cancer at 34 but I can’t imagine having MBC so young. I hate cancer