Rosevalley - this is for you!

Mominator

Oh, Rosevalley, no, no, no!! I'm so sorry the Abraxance is not working. I hope your doctor has another plan for you.

Sending so many prayers and strength for you. Madelyn

Kandy

Rosevalley, I am so sorry that it's not working and you are feeling miserable. Dang this situation. I do hope your Doc has another plan. Maybe inquire about Taxol in pill form. Praying something changes for you quickly.

Holeinone

Ah, Rose.....


Sorry you are so sick again. I sure hope you have pain relief.
One day at a time.......

Loveroflife

Oh, Rose....what awful roller coaster rides you have been put through.

Regarding Oraxol:

https://clinicaltrials.gov/ct2/show/NCT02594371?te...

Hopefully, your MO can get you in.

Zillsnot4me

I'm so sorry for your misery. I'm really sorry it's not working. I don't blame you for refusing the next Axbrane treatment. Hope you find some relief.

Kjones13

so sorry! I hate this for you! Sending love

Iwrite

Rose valley, So sorry you are feeling miserable. One day at the beach is not enough! Hoping you can find some relief from the bloating and nausea and strength to get through the summer with your family!

Rosevalley

Well poor Stephanie's drain isn't working again.. I feel so badly for her. I just filled a container so quickly I went past the 1000cc mark. If Abraxane was working there would be a reduction not an increase. Definitely an increase in the fluid. I woke up burping and icky at 4 am and slept in the recliner. I took a bunch of simethicone and that seemed to help. I am just going to lay low.. vacuum and clean and rest. DD3 comes home from camp so there will be loads of laundry. ugh..

Percy cat is laying on my lap being my little lap warmer and purring up a storm. It's cool and cloudy today. I have a sweat shirt on. All you folks in hot humid places I am sorry. Pray they get Stephanie's drain open again. It's miserable to be fluid overloaded. May you all have a good day.

Longtermsurvivor

love, love, love for you, dear Rosevalley, Stephanie

PattyPeppermint

oh rose. Sorry the tx isn't working. The constant vomiting is horribly hard on your body - I know and sympathize. I know your goals been 7 more weeks. You Ave met and exceeded so many goals I pray this is the same. Isnt there someone who can help with the laundry ??? Much love.

Rosevalley

I really hate puking. But I will say it brings relief from the nausea. Awful taste. It is amazing to me how 2 days vomiting can leave you dehydrated and weak.How concentrated your urine gets etc.. It's amazing how fast. DD3 came home from camp. My DH did all the camp laundry, dishes and dinner. Including a fair amount of yard work. I wonder if it isn't hubris that makes us think our kids and families won't carry on without us. Of course they will and they must. It just seems my timing sucks- not that I have choice in this. I am tired.

It's funny how so many talk about dying with family and friends. It is something that I find odd. It's a solitary trip in and out of this world. No one gets to go with you (generally) in or out. It seems more natural to die alone quietly under a tree, peacefully focused on the task of leaving/ separating from this world and the next.

Do you know I text my kids and tell them "Good night love you Mom xoxo." I do this most nights even though she is in college. I hope they know they are loved always even when the texts stop. Sleep well everyone.

PattyPeppermint

rose. The texts nightly to your kids is sweet. I am sure by your post the are going to KNOW that you loved them very much. But now they will also be able to reread your text every night if they choose to. I have found that when I puke I like to eat watermelon or chocolate even if it is just a bite. They taste the same coming up or down. At least the puke taste isn't so horrible. And yes our familky. Friends. The world will somehow go on without us. That's so hard for me to grasp. Was just talking to sister about this. Funny how I want to be able to control so much after I die, but I just can't. No matter what they are going to do things their way and we can't control it. Lack of control is te biggest hurdle for me. I remember when my mom was dying and she was fretting for her children who are all successful happy adults. Trying to plan our futures. I couldn't understand - but NOW I do. I like the idea of dying alone quitely under a tree. I want it to be a solitary time for me. Well of course God and angels welcome. I do like the idea of my dh holding my hand but do not want to put him thru that pain. The pain will be hard enough he doesn't need that memory. I will be cremated. I don't want anyone seeing my dead body except funeral personnel. Unfortunately dh will probably see it to call them. I have strict request that my dss don't see it. Of course again truthfully beyond my control. I pray earnestly that dss won't be the one to come in and find me dead. For a really long time I remembered both my parents in a coffin or a hospital bed because of cancer. Finally I can also remember good times but those horrible visions still come with. Anyway just my personal decisions I know some people want to e surrounded by people when their time comes. To each their own. Right

Kandy

Rosevalley, so sweet that you text your kids every night. That just made me smile. I am sure they feel your love every day and will hold it close to their hearts forever. I also like the thought of dying under a tree. I am such a outside nature girl, that would fit me too. I struggle with the thought of having my DH with me at the end. I also think that would be hard for him. We have known each other since I was 14. A lifetime with him. I always have said I wanted him there but not sure now. I am so directional stupid, I kid that I probably won't be able to find heaven, I will have to wait for him to show me the way, lol. I hope you have a better day today. Praying that you are more comfortable.

feelingfeline

Patty so sorry you lost both your parents that way. No wonder that stuck with you. Truly the mortal remains are the wrapping paper, not the gift.

My dear next door neighbour died yesterday afternoon. We have been neighbours 12 years, and you could not wish for a more lovely neighbour. She had BC after me and got a recurrence, mets in liver and bile ducts, only discovered less than 2 weeks before her death. Unbelievable. Despite the sorrow I thank God she was spared a long illness. Her family have told me she was lucid right before the end, I truly think she had a blessed death. I have noticed over my life that people who are dying from an illness (not a sudden death) often seem to get some little graces in their timing and may be able to go when the one person who could not have coped with being there had taken a break to step out of the room, or they can hold on for another person who needs to be there to get to their side. I pray that grace for anyone who needs it.

Dear Rose it is not hubris. It is human. Our normal instincts as mothers are always to protect and care for our children, at any age. That is why Moms in their 80's (like mine) still worry about their children's well being.

Rosevalley

Well I was puking dark green at 4 and again at 9. Nothing much is staying down. Sucking on butterscotch candies to get that taste out. Ugh.. I can't believe this has turned around this fast from eating to puking up even water. I wasn't going to go in for Abraxane on Tuesday but I think I will go for the IV fluids and a talk about how this is failing totally. DD3 is home all week and I can't see that I will be good for much. Spent the night in the recliner to ease the reflux. This makes my back ache though.. and retching.. I wonder how much of the reglan, prilosec and oxy got absorbed? I wanted so badly to make it till August but this is pretty miserable and if I can't get fluids to stay down then..

Friendsof feelines- your neighbor is blessed to go quickly. Is there as much breast cancer in Ireland as there is in the US? My Dad was black Irish with blue eyes... my Irish Grandmother had Breast cancer too. She had IBC and went in 3 years.

Patty I will also be cremated. Then sprinkled back under the forest trees. My cats are all sitting around me.. greetings good morning! Purr-- it is nice to be loved. Muddling through another day.

feelingfeline

Rose sorry you are so sick. Sad to say BC pretty common here too. Hope today will be a better day for you. XXX

Zillsnot4me

Do you have any anti nausea suppositories or someone sweared by canibis oil? I think it's the worst feeling in the world. I hope you find some relief and get some fluids.

Rosevalley

I puked so many times today I lost count. I have CBD oil from pot. It works especially with zofran. I took zofran and I feel a little better. I have suppositories but they make me so jittery and miserable that frankly I would rather just puke. Zofran doesn't have any side effects.. and the pills dissolve. I will go in Tuesday for fluids. I should be dry dry by then. I am trying to drink fluids. I figure if it comes up, some has to get absorbed.

I am besides myself with indecision about the DWD meds and when to take them. If my gut shuts down I am at risk of puking the meds up before they have a chance at working. Ugh..that would be tragic. When did even dying get so complicated? I am just floored at how fast I have declined. I feel tired and weak. It is just crazy fast much faster then Feb. I guess I should be happy I made it this far. No one thought I would. It just seems incredible that I was eating blue berries a week ago and my system has restricted and shut down in 4 days?? Crap. The cancer was just waiting to pounce... Abraxane isn't working at all. I have blown through ACT, Doxil, Herceptin, Ibrance, Femara, Arimidex, Aromasin, Afinitor,Faslodex, Taxol, Abraxane, and right now all the orals are out.

Should I even bother with another chemo? Any ideas what might be next? My onc said Taxoterre is out. I took a shower and feel better except for a blistering head ache. The deaf kids went to Deaf Church with their Dad. I hope they had fun. I am feeling very useless and discouraged. So much to do and no energy.

mara51506

Oh Rosevalley I am so sorry you are back to the N/V again. Hugs to you.

Jazzygirl

Rosevalley- I am sorry that you are having such a bad time. I know how important it is for you to be around the summer for your DD.

With respect to the meds, are there resources in the program in Oregon to help you to know what to do if you choose this option?

Praying for you.

Kandy

Rosevalley, no advice but I am praying for you to have some relief. My heart is breaking for you.

Kjones13

I am sure you are struggling with the dwd meds. It's a big decision. I believe we all hope for the best, but the reality is much different. But, I think you will know what is right for you...and when.Holding you in prayer.

Zillsnot4me

oh Rose I didn't even think about the dwd were pills. Duh! I completely understand your delimia, fear, anxiety, etc... Sorry to be such a dimwit.

Tuesday is so close. You definitely need some fluids. That will help you feel better and have a clearer mind.

Praying for you to have enough strength and peace for whatever is best for you.You are an amazing woman.

PattyPeppermint

rose. Hoping you are sleeping and fully gotten the vomiting under control. Maybe fluids Tuesday will bring some much needed relief and therefore a clearer head on making the right decisions for you. Who knows. You may get some more quality time with a new tx. Kinda jealous you have the dwd pills. I do remember how much effort you had to put out to work this out. However I hadn't thought of the stress it must be trying to decide the right time to take them. At least it does give you back some control. A two edged sword I guess. HOPING you wait Til after Tuesday to make a decision regarding dwd. Big hugs

Noni

I remember a recent DWD documentary from Oregon that showed the meds being crushed and mixed with apple sauce or similar. I believe that's how they recommended taking it.

Would that be any easier for you? Sending you daily prayers.

Rosevalley

I have my DWD meds and have not opened them to empty the powder and yes you mix them in juice. Make a slurry and down the hatch. It should work to put you to sleep in 20 minutes to an hour. Then your breathing stops. Very dignified and short and sweet. Much nicer then the long drawn out alternative.

I just wanted to get some counseling sessions in for DD3 and say my goodbyes. I will ask about Gemzar as Oriole mentioned it. Maybe it would get me to the end of August. I woke up and puked a couple of times earlier in the morning. Took zofran and feel much better. Drinking tea and clear boost. Hopefully it will stay down or most of it. Off to the oncologist tomorrow.

Thanks for your prayers and well wishes. It sustains me. Lovingkindess back to all! rosevalley

Longtermsurvivor

Oh sweet Rosevalley, this just sucks and I'm so sorry that you are undergoing the revolting N&V again. Plus another treatment failure.

I do remember when you were limping along through December 2015 trying to get to Christmas concerts and festivities.

Seasons have passed and your moments of reprieve stretched into summertime.

Then, bam!

Here you are again.

This time you have the DWD meds - no thanks to your insurance company. But thanks to your perseverance.

Rosevalley, we're both so strongly aligned with life and being here to support and love those we care for. Yours is a nuclear family and my loved ones are my extended chosen family.

We want to keep showing up to make a positive difference for those we love. And yet, at some point, I feel, we must choose to enter the greater stream of life-death-life.

Buddhism and nature teach us that all of life is a circle turning turning. We can try to hold back time and the seasons, but still they come on, regardless of our individual needs and plans.

I recently read of the difference between the ancient Greek words zoe and bios. While both mean life, zoe is the infinite and universal life. Bios is the finite and individual life. Zoe is Life. Bios is life expressed in time and space, our individual lives.*

A lifetime of being alive gives us the perspective that our individual lives matter most. This is reinforced when others rely on us - as your family certainly rely on you and my friends and family rely on me.

Yet, I take comfort in those cyclical expressions of Zoe - the greater life force.

To return to that strengthens me.

Maybe the return will strengthen you too, dear Rosevalley.

We are both Zoe and bios - greater and manifest beings.

Sending much loving kindness as we both contemplate our edges.

Big hugs too! Stephanie

xxx

* "In reality, the difference between Biological life and Spiritual life is so important that I am going to give them two distinct names.

"The Biological sort which come to us through Nature, and which (like everything else in Nature) is always tending to run down and decay so that it can only be kept up by incessant subsidies from Nature in the form of air, water, food, etc. is Bios.

"The Spiritual life which is in God from all eternity, and which made the whole natural universe is Zoe.

"Bios has, to be sure, a certain shadowy or symbolic resemblance to Zoe: but only the sort of resemblance there is between a photo and a place, or statue and a man.

"A man who changed from having Bios to having Zoe would have gone through as big a change as a statue which changed from being a carved stone to being a real man."

Mere Christianity by C.S. Lewis (p. 159)

Rosevalley

Apparently my cat Percy who has spent many of the days at my side sleeping on my stomach decided I needed a treat. He just brought me a baby bird a Tohee I think . I am sad as they are our favorites. The cat's favorites too because they are always on the ground rooting around. It had it's feathers and was ready. pitiful I burried the little baby bird in the front yard. Percy is disgusted... "here I brought you a treat and you didn't even eat it." I put him inside and shut the cat door. Sigh..until all the fledglings get air lifted the cats need to stay inside.

Stephanie.. thank you for your kind words. Zoe it is! Life infinite in it's expression. Although I think of Zoey.. our gimpy chunky toothless 13 year old grey cat. smile... She is Bios for sure. It is amazing I made it thus far. I remember my acupuncturist telling my my "life force" was very strong. How he could tell I don't know.

Zills and Friendsof Felines are visiting together in Ireland! How cool is that! I hope they have a great time. Hoping for pictures.

Jazzygirl

Rosevalley- pictures of Zills and FeelingFine on Insomniacs thread.

PattyPeppermint

their meeting is so cool. I hope to meet some fellow bco sistas sometime before I die