Rosevalley - this is for you!

Holeinone

Rose, thanks for heartfelt post. I enjoyed reading your spiritual history. I will google Shangha, my knowledge of religions is zip.

Hope for a better day for you tomorrow.

Rosevalley

Hooleinone- I didn't realize you were ILC.. me too.

Anyway The Three Jewels in Buddhism are:

The Buddha

The Dharma- take refuge in the teachings

The Sangha- take refuge in the community (like a congregation) You go to Sangha like you go to Church, Temple or Mosque

I have always enjoyed learning about religions and explorations. It's very interesting what inspires folks and gives meaning to life. We are far more similar then different. Sleep well.

Mominator

You're not rambling at all. You're telling me some interesting stories and I'm enjoying them.

I'm happy to hear of DD3's positive experience in Deaf Church. I hope she continues to feel love there.

I wonder so much about the different religions we have on this planet. I like your "many paths up the same mountain" philosophy. I wish all religions could join hands and live in peace.

I send prayers and loving kindness to you for relief from your symptoms. I wish I could help you directly. I wish that your daughter didn't have to see the draining. I understand you want to protect her from that. I know Lori's children helped their dad take care of mom, and dad shielded mom's dignity through most of it. I also know that they have so many more memories of happy times.

There is nothing pretty about breast cancer. I hate all the pink. My BS's office is awash is pink. She and her staff participate in several BC events every year. While I appreciate all the money they must raise, I wish, not just her office but all of cancer land, there was less emphasis on awareness (which has been accomplished) and more work for the prevention and cure of MBC. I had asked about the use of Toradol/Ketoralac to help prevent recurrence, and she said she doesn't use such things until they are tried and tested.

Yes, I'm making a blanket out of the roses. Originally I was just trying to see if I could could use up some leftover yarn, with a smaller project, but then I fell in love with the patterns and will expand it to a blanket.

Longtermsurvivor

Good morning, dear Rosevalley,

Thank you so much for sharing more of yourself - your geographical and spiritual biographies. I loved mentally following you through your changes.

And then breast cancer struck the heart of your life - your ability to participate in Sangha, but more importantly family and future. It seems like chaos and upheaval, suffering and upsets in your already full life.

It strikes too at your everyday comfort and well-being, your ability to participate, to celebrate your husband's birthday with a simple meal out, your attendance at deaf church.

I'm glad your daughter is finding another pillar to cling to now. Does the church have a summer camp? Is there a camp Kesem for kids whose parents have cancer in your region? I know they sometimes welcome special needs participants. You've expressed concern about your DD and want to be there for her all summer long - in spite of your own increasing symptoms.

Prayers that your wishes can be fulfilled and your daughter's summer days enjoyed with you.

Sending so much light and lovingkindness, Stephanie

My friend gardens on the cooler, wetter side of the county and here's a recent photo of her garden:

ruthbru

There is no place like a garden!

Rosevalley

Thank you so much you are so right! Gardens are a bit of heaven on earth. The East side of our house is planted entirely in different types of hostas and foxglove...of course.

Ibrance and falodex aren't keeping my tumor markers down. I got my results. The number went up to 920 from 870. Which is why the increased nausea, vomiting, bloating ascites and symptoms. I didn't think it was working. But my labs are good and maybe it takes a while. I don't know.

Be well sisters. Lovingkindness to all. rosevalley

feelingfeline

Rosevalley

I have one more pill of Ibrance and I can't do it. I just vomited breakfast and that med gives me such heartburn, terrible taste from the belching and bile and bloating. Can't do another. I just pulled off 1100cc the most i have done since Feb. Ascites is way up. All indicators are this isn't working. I could try xeloda but my heart is heavy. How would I keep it down? I wanted to stay for the summer. Do I poison myself; lose my hair try chemo to stay July and August? Would there be enough of me left over to make the misery I would endure worth my presence to my daughter? How did these choices get so hard? I feel awful..queasy and tired. I watered my plants. Couldn't walk the dog even... all my animals are old. It makes me so sad to leave them.

My beloved Percy cat is drinking so much water and he is so thin and emaciated. He's hyper thyroid and probably kidney failure. So he will go too soon. And me. My poor 15 year old. Loss after loss. Thank you for your support and blessings. Love to you all. rosevalley

Kandy

Rosevalley, my heart is breaking over your post. I was so hoping things would get a little better for you. I really don't have any advice. What a difficult decision to make. Maybe talk to your oncologist and see what they think. I am praying for you.

Mominator

(((HUGS))) Rosevalley

Praying for a miracle and/or your MO can pull something out of the hat.

Holding you close in my thoughts and prayers.

Madelyn

Longtermsurvivor

Dear Sweet Rosevalley,

I'm so sad that it's come to this point now.

We'd all hoped for at least three more months to launch your DD3 into her new school year. And to give you two time to regroup.

I've no practical aid or advice to offer you, just love and a listening ear.

Rosevalley, like Mominator, I hold you close in thoughts and prayers.

loving kindness, Stephanie

PS, Did your oncologist say how long it takes the Ibrance to work? Are things likely to get worse before they get better? Or are you in a slide again? You already know your other treatment options and must weigh the risks and benefits of each without knowing how you or the cancer will respond. What agonizing decisions. My heart is with you.

Rosevalley

Stephanie I feel like I am on a bob sled going down a steep slope. It's like the misery of Dec is fast forwarded to June. the ascites has taken off and I am filling a container past 1000 every other day. The relief is instant but sometimes painful. I positively slosh. The nausea is in waves. I throw up anything solid. Milk and yogurt and soda crackers are staying down. Waves of vomiting in sets morning and night. I have terrible gas, burping and my intestines are in an uproar noisy. I laid around all day and just watered the plants and moved the sprinkler and watched the birds. Too tired. My daughters graduation from 8th grade is next week Thursday. I will not be able to eat anything at the BBQ. I will need to load up on zofran and reglan. I need to be at that graduation. No bucket. I need to say good bye to folks and celebrate.

The Ibrance isn't working and neither is the faslodex. My bottle of Ibrance says expires 5/2016. It should still be good. This is happening faster and harder then I expected it to. My DD3 has camp planned and I haven't told my DD1 and2 about the decline. DD2 just finished her exams today and thinks she did well. I was so happy for her. She's worked hard all year. I want her happy and feeling good.

I will call my oncologist and ask her if there is anything to do that would get me through to August. Just so my DD3 doesn't have 7 weeks alone. If nothing works or the SE are too ugly then it's time. We go for broke cause the cancer is having an explosion inside of my gut. The cancer will win I know that. I am selfish I want 10 weeks. I might not get them.

Need to pick out a cremation place. No services or obit... blow the sand away. Sprinkle the ashes under the moss of a fir tree in the forest. lots to tie up. Thank you for your support and well wishes. Blessings to all. rosevalley

Loveroflife

No words, Dear Rose. Praying for you.

feelingfeline

Dear Rose, you know one little thing (watering thirsty plants) is a still step taken, and it sounds like a heroic accomplishment when dealing with such hellish illness. Some days one step is enough. God grant you some rest and respite. I pray you will have a truly great day at the graduation. You must be very proud mom. XXX Susanna

Longtermsurvivor

Oh dear Rosevalley,

My heart is with you this morning and I feel how very, very harsh this is for you now.

It is like an out-of-control sled on a steep and narrow track - all you can do to hold on, try to steer, brake and jump when YOU are ready.

Your daughter has been closely connected to you for so long - I still remember your sharing with us her huge, loud sobs when you were doing so poorly last winter. She "got it" about how ill you were. And your knowing of that pierced your heart and ours. Now it seems like you're quickly headed there again.

I so wish I could ease your suffering dear Rosevalley...or at least, coach you from the ground about how/when to steer, brake and jump.

Please know I'm loving and listening in my own ascites haze.

Flowers from the funeral home parking lot:

Sorry, the name has escaped my mind this morning.

Loving kindness, my friend, Stephanie

Noni

Rose, I'm so sorry to read of your struggle. I so wish that the Ibrance worked out better. Perhaps there is another option that will see you through the summer without losing too much of yourself.

Some can say that being terminal is a gift, because it gives you time to prepare and say and do what needs to be said and done. But some days I envy those who get hit by a bus. They don't have the constant worry and concern about how their loved ones will get along without them.

Your girls will do well, as they've had you as their mother. It will not be easy and there will be pain, but there is help available to them.

I have deep respect for the way you've handled yourself. Gentle hugs to you.

Noni

Rosevalley

Well it's official I am crazy and off my head. I swore back in 2007 that I would Never touch chemo again... no taxol no zip. ACT was that traumatic and miserable. I just signed up for taxol palliative doses pending insurance coverage. It's every week for 3 then one off. I figure I need 2.5 months. Then we can slam therapy and everything else for my DD. It's against my better judgement but oncologist said once it kicks in I won't puke. This I have to see. I will trade barfing for increased neuropathy but if it gives me till school starts then great. Oral pills are not an option they don't stay down. I can not believe I said yes to chemo every week. There must be an ICD9 code for this. I look like shit bald. Uncle Fester from the Adams family - really scary sight. On the up side I will go out looking like Buddha!

Noni- my DD3 was adopted and has a lot of trauma from her early years being in an orphanage. There is mental illness from it all or genetics we are not sure. She still hordes food and hides it and has since she was 4 when she got here. All the years of feeding and loving and she thinks she will starve still. It's pitiful. When I die it will be yet another loss and abandonment in an already hurting heart. When we buried the pet rabbit she sobbed and cried.. the dog and cat too. Never mind the cat was 16 and the dog 18 and OLD! Life is full of separation and hurt. I am trying to instill in her that 40,000 loving Mommies and Grandmas die every year from this crummy disease and it is no ones fault. All she sees and feels is that someone who loves her and cares about her dies and leaves yet again. SIGH... what to do?? I just can't leave this kid alone in a house 9 hours a day while Dad works. I need to try and stay alive until I roundup some care givers and school starts.

You are right that those lucky souls who get hit by a bus and taken out in an instant are spared having to think about what is being left behind. This is hard for me. I feel horrible guilt. I promised to be here for her and I can't. She drives me crazy sometimes and yet I feel very sorry for her. She hurts and is scared. I worry about the future and my DH's ability to cope being a single Dad. I feel guilty about leaving him too. But I can do something for 10 weeks. It's not forever. If it doesn't work then at least I tried and that voice in my head that says "Moms never give up," will be silenced. If I was single I would not do this. I am tired. Now to get through the days until insurance approval.

Hummingbird4

Rosevalley, I was hoping Taxol was being considered. I am so upset and sorry that you are so sick again. You know that I was very sick the same months as you were from Dec. through February, and I truly believe that I wouldn't be here today if it weren't for Taxol. Nothing else was helping. It took 3 infusions, though, to clear things up and it was hard to wait because of all the severe pain and swelling. But once the Taxol kicked in - relief!!! Yes, you will lose your hair but - some women get hair back while still having treatments. I am one of the lucky ones!! Had 17 infusions so far and my hair is coming in!! I'm on the same schedule - 3 weeks on, 1 off. I'm finding it very doable. Very little neuropathy and yes, fatigue on chemo days. The day after though, I have tons of energy from the steroid which is nice!! Otherwise, no side effects. I'll be hoping and praying that Taxol will work for you too. And be an easy treatment for you. Wishing you begin to feel better very soon.

mara51506

I am including this blue iris to you since I know it can mean hope. It is my hope for you the Taxol will at least ease the N/V you have endured for such a long time. You are still an inspiration to me and I wish nothing but the best for you from Mara.

Iwrite

Rosevalley,

If Taxol can give you relief and give you the summer with your children then you will be able to reach your goal. And...as girls...we get to change our minds whenever we want. It's totally different than being crazy!

Praying for you...

Longtermsurvivor

Dear Rosevalley,

Your decision is completely in keeping with your higher purpose in this lifetime. Your ability to accept personal sacrifice to care for those who need you is awe-inspiring.

I bow down to you, my dear, dear teacher.

And, I will pray that you like Hummingbird (our peritoneal sister) get a good response with bearable side effects.

all love always, Stephanie

Rosevalley

Mara- what a stunning blue! So beautiful. Thank you. Iwrite- Its nice to know I can change my mind but it is out of character for me since dose dense chemo. A woman's prerogative! loveroflife- what a sweet picture. Feline feline- I am proud of her. Stephanie- I hope I can do it. I am not a hero Mom but very ordinary. I think those Moms and Dads who brave war, famine and terror to be refugees and homeless with out a country are truly heroes. I watch that and think I could never do that- can't imagine it. I just try to be the best Mom I can. I ate some mash potatoes and that was a mistake.. up they came. I am getting philosophical... it tasted good going down. Kind of stupid to eat them. I am just resigned to spending part of the day vomiting. I need to stick to liquids.

Hummingbird- you give me hope! You have had 17 treatments? My onc called me back today and said she would give insurance a call to authorize it. Then we will schedule. Taxol was top of her list. 3 on one off same as you. I forgot they medicate with benadryl and decadron before taxol. I used to pace the chemo suite just jittery and hopping. Ugh.. Well now I have Ambian to help me sleep so it shouldn't be too bad. I hope it works to keep me here through August. That's my goal. My DH said if it is too harsh I can stop and leave. Sweet. I will try. Hope they get me in soon.

Thank you all for your support. This has been a miserable run.. N/V sucks. Love to all. rosevalley

Kandy

Rosevalley, I am in high hopes that Taxol will be the right ticket. Your determination and strength is unbelievable. I really hope you feel better soon. Holding you in my thoughts and prayers.

Hummingbird4

Yes, I just had my 17th Taxol yesterday. I had my first on Jan. 12. So I went into February still feeling lousy, but then as I continued I felt so much better. On chemo day, the Benedryl puts me out so I don't feel the dexamethasone. But the day after, like today, I'm hyped up! But this is so much easier than the chemo I had early stage. I hope you find that too. I think you will. Taxol is easy on the stomach, no nausea, and that helped my MO choose it for me. Good Luck and I hope you get the insurance approval and begin as soon as possible so you can get relief!

Holeinone

Humming. Bird, this is also my 2nd rd of chemo. Much easier, but still no picnic. First time dose dense Taxol.

This time 6 tx. Of Taxotere.

Rose, sweet dreams, glad you got ambien. I just take 1/2, works.

.

Zillsnot4me

Awwwe Rose I so feel your pain and your determination and your fear. You are so very brave and selfless to soldier on. It's what moms do and yes you can change your mind at any time. We are all here for you night or day.

You are so tenacious. I hope and pray you get relief from the n/v. It wears a body out physically and emotionally.

Good luck with the graduation!

Rosevalley

I love this show on the History channel called "Alone." It's a survival show in the wilds of Vancouver Island in Canada. The people must brave the elements, find water, food and survive being wet, cold, animals and utterly Alone. Two of these amazing people left the race because of loneliness and missing loved ones. Their bodies were fed, their souls and need for companionship empty. These folks compete for a 500,000 prize. The beauty of the Island and the wildlife is stunning, they were making it but not mentally. This area is so beautiful but that isn't enough. I have been there on vacation and love it. My DH and I had a wonderful time up there - together.

Cancer is a lot like the show Alone. We are alone on our journey navigating the cancerland waters- treatment, isolation, feelings about death, living, drugs and side effects. We go on a journey of real life survival. Fighting mentally through the sheer years of treatment and trials of different meds, symptom management, surgeries...on and on. Then the social aspects of cancer - the isolation, social effects and effects on our family. It's a mental mind game. Our families can sit on the outside and watch, support and cheer... but the cancerland journey we go alone.

My DD1 is special needs developmentally disabled and autistic. She sent me the sweetest email tonight. In short it was "we will do fund raiser and get new medicine to fix you. You can stay." Oh that it was that easy. Just pop that pill and make it all right. There is no fun raiser to fund cause there is no cure. The email made me smile. Life is simple for her, literal and good/bad.. I just have to align myself with the good side to win. Mom will stay; Mom is good. Life isn't so clear. She is comforted by seeing me upright and doing normal things. Now I will lose my hair and look like a cancer patient. I have lost so much weight that my wedding ring has fallen off several times. My clothes look like sacks. Now I will look like cancer (bald) instead of me being the only one who feels it. I feel the effects always but only I do. People around me say "you look good- do you feel good?" I hide it. Why talk about what you can't do anything about. Life is what it is. Cancer is eating me alive. Fluids i drink leak into my gut and fill it with fluid, instead of heading out my kidneys. I am always thirsty. I feel that daily slosh of fluid, aches when it comes off. Can't eat, N/V. I take naps.. fatigue. This is so strange this disease. Thoughts about cancer for the night time.. got to go ambien kicking in. Thanks for letting me ramble. Sweet dreams to all.

feelingfeline

Rose, not crazy.

Loveroflife

Your DD is so sweet and innocent. She has a pure heart. Sleep well, dear Rose. May your tomorrow be better than today.

Longtermsurvivor

Dear Rosevalley,

It's a quiet morning on Moonlight Farm – the rooster isn't crowing, the dogs aren't barking and the neighbor's construction hasn't begun. I treasure these quiet moments before life kicks into noise. How fortunate that nausea woke me and I saw the acorn woodpeckers flitting to their dead pine apartment building, the sky backlit by dawn clouds.

It's funny, I used to be so very social and connected, but these years of living on my own have made me protective of my own private and quiet life. With death coming, I feel that slipping away - people come daily to take care of me. Just 2-6 hours and they aren't guests - are responsible for their own food, drink and work. Sometimes I sleep through much of their "visit". But each moment of life on my own reminds me how it's all slipping through my fingers. And that I never feel alone when in relationship with self, nature and the unseen worlds.

Anyway, I'm thinking of you and how it must feel to be the strong one for your daughter. And to know you'll soon again be exposed as "the cancer patient".

Sometimes being with others while being perceived as "other" isn't belonging, so much as feeling separated, apart from them, an object of pity or concern. Other times, we feel our difference and are unable to bridge our inner life with others' expectations based on appearances.

Rosevalley, I love you and appreciate you sharing your open, raw feelings about your life now.

There's nothing practical I can do for you, but open my heart's ear to you and listen, love, admire and respect you.

Oh, if you can, please get yourself at least one set of clothes that fit. It may do wonders for your self-image.

You aren't the old you, yet you are still beautiful, strong you, Rosevalley.

listening and loving kindness, Stephanie