Rosevalley - this is for you!

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  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited July 2016

    Hi, Rose. It's been a while. I'm trying to catch up. Reading your most recent posts, I thought of this poem by...you guessed it... Mary Oliver.

    Reckless Poem

    Mary Oliver

    Today again I am hardly myself.
    It happens over and over.
    It is heaven-sent.

    It flows through me
    like the blue wave.
    Green leaves — you may believe this or not —
    have once or twice
    emerged from the tips of my fingers

    somewhere
    deep in the woods,
    in the reckless seizure of spring.

    Though, of course, I also know that other song,
    the sweet passion of one-ness.

    Just yesterday I watched an ant crossing a path, through the
    tumbled pine needles she toiled.
    And I thought: she will never live another life but this one.
    And I thought: if she lives her life with all her strength
    is she not wonderful and wise?
    And I continued this up the miraculous pyramid of everything
    until I came to myself.

    And still, even in these northern woods, on these hills of sand,
    I have flown from the other window of myself
    to become white heron, blue whale,
    red fox, hedgehog.
    Oh, sometimes already my body has felt like the body of a flower!
    Sometimes already my heart is a red parrot, perched
    among strange, dark trees, flapping and screaming.

    In lovingkindness...

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  • stagefree
    stagefree Member Posts: 2,780
    edited July 2016

    Rose ;)

    How you doin'? İs my favorite line of Joey from FriendsTV show.. This is how I think of you every day.. Always in my prayers..

    I never thought I'd get this far myself, DS was just 7 and now 11,5.. Already a teenager. Weird, he prefers to talk the sex biz with me rather than his dad .. I told him the other day dad knows better cos he has the willy and I don't .. Still he prefers me;))) for the chat. Better start reading cos I have no idea how to manage a teenager boy in such state hahaha ! Help!

    Hugs

    Ebru

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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited July 2016

    Stagefree- You make me laugh!! I grew up with nothing but brothers and all their hoopla and girl chasing! I remember throwing my teddy bear at my brother and telling him to practice being a good kisser! Never maul.. We used to talk and sit on my bed and I would try and give them the "girl" perspective and they would give me the "guy" perspective. It was such an education we spent many an evening laughing and teasing each other. So maybe that's why your son prefers to talk with Mom! He wants to unravel and get to know the "woman's" perspective. Who better then someone safe and loving- MOM! Your son is smart. Learning and caring to understand others is the way to tolerance and loving behavior in life. Caring about others transcends race, sex and religion - universal. I personally think it is the key to Peace on Earth when we see "other" as interesting, valid and like us. I swear being a Mom is the hardest job. Prayers your way and isn't it sweet to see your kids grow up?

    Brenda-Thank you for sharing the Mary Oliver poem I just love her. She has a way of speaking right through things in a very raw and immediate way. Her images paint a picture. It was interesting today in the infusion room. The nurses are opening up more as people. Some have suffered such painful prsonal losses and yet they work with cancer patients daily accepting more pain and loss. That takes strength and fortitude. To watch these life and death struggles.. roller coaster rides up and down. Slowly dying and reviving. Seriously I don't know how they do it. It's hard for me to live it. I can't imagine working in it too.

    I drove myself to the cancer center. The traffic wasn't bad coming or going. I didn't even get out of there until 5:30 and Made it home in a little over an hour! I was kevetching ?? spelling... over how bad it was going to be(before I left) and it wasn't! All that anxiety for nothing. Our fears are frequently way worse then reality. Abraxane seems tolerable. Labs were good have to wait for markers. No change on the ascites fluid portion. Still hoping to maybe stretch draining over 3 days instead of every other. still guess what I ate for breakfast?? Blueberries off our bushes, strawberries and granola. Wow was it good. In March I would have puked my guts up. In July I ate normal food and felt full not sick. It's the little things that really are lovely. A fresh organic blueberry picked right off the bush is one of life's unsung delights!!! Heavenly. Not to brag but Oregon grows the BEST Blueberries!!! Living around cancer is a triumph. But you knew that. Peace to all.


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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited July 2016

    image

    Dear Rosevalley,

    So happy to "see" you eating fresh blueberries in your yard. You are so fortunate!

    Went out strolling around the farm yesterday and found these 6' tall lilies blooming. The luscious scent!

    Wish I could waft it your way.

    And our blackberries are sweet, thick and black - melt in your mouth tender. My neighbor came over with fresh blackberry sorbet - as thick, dark and rich as any dark chocolate confection. Wouldn't that be lovely to share with you!

    We are so blessed by our meetings with the beloved fruits of our labors - and our neglect. Our berries grow themselves and are overtaking fences, barns and small buildings. :) Your fruits thrive in the conditions you provide. And yes, I mean your family, pets and home in addition to your garden.

    Sending much light and loving kindness this morning, my friend Rosevalley.

    warm hug too, Stephanie

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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited July 2016

    I had a hard time last night digesting my food. Lots of reflux and heartburn from dinner. I slept in the chair until 5am and then went in to sleep on the bed. I couldn't understand why since I was doing so well. Well I got my tumor markers back today and they jumped 134 points to 824. Shit. So the Abraxane isn't as available as the taxol which dropped my markers to 690. Ugh. So we are headed i n the wrong direction fast. I am sad. Now what?? Taxoterre? This sure was fast. ugh... I have a week off. to think about options.

    Stephanie our blueberries are all in pots. We move them around in the sun as the light changes. I have summer squash in pots and tomatoes in pots. None are ready. Hope I get to eat them. Well back to the drawing board. Caner humbles even the most optmistic person.

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited July 2016

    Rose, so sorry.

    Hoping they come up with a new plan of action soon

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  • Hummingbird4
    Hummingbird4 Member Posts: 331
    edited July 2016

    Rosevalley, I am so sad to hear this! And I know that feeling of - where do we go next? My mind was all jumbled with worry and research the past few days that I was trying to decide my next treatment. But there is no good, solid, right choice. We just try what our doctors think might be best for us. And then hope and pray and just try to keep going and enjoy what we can. Wishing you the best in choosing your next treatment; hope it works well for you.

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited July 2016

    (((Rosevalley)))

    So many feelings.

    My desire for you is that you achieve your heart's desires -

    A good enough summer to get DD3 launched in a better direction.

    A good enough summer to enjoy eating, life, love, family, garden and life's simple pleasures.

    A good enough summer to not be troubled by treatment side effects and failures or by disease progression.

    I still desire these things for and with you!

    And I will hold you in loving healing light as you're hit by this new news.

    for you, my friend, Stephanie

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited July 2016

    Thinking of you. Hoping and wishing and praying.

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  • Kandy
    Kandy Member Posts: 1,461
    edited July 2016

    Rosevalley, I am so sorry that treatment seems like it's not working. I sure wish I had a magic wand, to make something stop progression. You are so close to making it through the summer. I am still praying that when you do, that you will establish a new goal. I am still praying for you. Hope you are able to enjoy the day.

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  • Mominator
    Mominator Member Posts: 1,575
    edited July 2016

    Rosevalley, I'm so sorry this treatment isn't working. I'm so sorry you had a tough night with reflux and heartburn.

    I hope and pray the next treatment is effective for a long time, and that you're able to enjoy the rest of the summer with DD3.

    Holding you close in my heart; sending light and love and prayers your way. Madelyn


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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited July 2016

    I heard from my onc and she wants to try one more abraxane treatment first. So I guess we do that next week instead of having it off. I am shocked that my markers jumped so much. I don't know why I am having such hellacious heart burn reflux and gas, but after these infusions I am just a mess. I have tooted all day! Sucking on tums.. TMI.. haha That is not supposed to be a side effect of abraxane.

    We went for a drive in the country and stopped off at a river and sat on the rocks and ate lunch. The water was cold and running bubbling... so soothing and beautiful. The area is forested and full of birds and wild flowers. The weather was perfect sunny and warm. We drove up over th mountains and the view was awesome. It was a nice day out. I figure I need to get in as much living as I can muster.

    Madeline- thank you and I wish I could hear your choir sing because it looks like a great group and what a setting. Gorgeous I saw the pictures you posted on Stephanie's site. I love choral music. Thank you everyone for prayers and well wishes I need them. I send them out and appreciate that they return in kind. Love to all.


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  • Holeinone
    Holeinone Member Posts: 2,478
    edited July 2016

    Rose, this works better than tums, for me.image


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  • ShazzaKelly
    ShazzaKelly Member Posts: 909
    edited July 2016

    Rose I wonder if there is any chance you could try the oral version of Taxol called Oraxol. There doesn't seem to be any allergic reactions too it as no premeds are prescribed and trials are showing there is a better delivery to the patient than the IV. I know a number of people on the trial have gastric cancers so having stomach mets shouldn't be an issue. There are a lot of capsules to swollow though for the 3 days of each week you take the treatment. I am on a significantly larger dose of the oral than I was on the IV and have far fewer issues.

    Just thinking out loud here. Hope I haven't caused offence

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  • feelingfeline
    feelingfeline Member Posts: 5,664
    edited July 2016

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  • feelingfeline
    feelingfeline Member Posts: 5,664
    edited July 2016

    image

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  • Iwrite
    Iwrite Member Posts: 870
    edited July 2016

    Good morning,

    So glad you have been able to enjoy being outdoors, tasting fresh blueberries and spending quality time with your family. You are absolutely right...these simple pleasures of life provide a lot of joy in dark times.

    Praying for peaceful and comfortable days for you and wisdom from your medical team to help you stay in a good place for a long time.

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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited July 2016

    I am scheduled to go infor one more abraxane then we talk about options. I will definitely ask about the oral form of Taxol. I got up at 5 just miserable with heart burn and belching. Took reglan and went back to sleep yay. I drained this morning and had quite a scare nothing came out except a few bubbles. I panicked thinking the dang thing was clogged. Its our vacation and we are headed to the beach for the day. So I got another bottle and low and behold it pulled out 1000cc! So it was a defective bottle and the suction was not there.. 158.00. So I need to call the company and get a replacement. Whew...I am sooo relieved it worked and the drain wasn't clogged. I felt full and feel much better to get it off. Oh boy that really scared me. Never happened before. I remember Stephanie writing that hers clogged and she needed to TPA it at the hospital to get it going again. Never a dull moment in cancerland.

    Be well fellow travelers. Off to the beach. Hugs to all.

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited July 2016

    Enjoy the beach. I find it very peaceful and calming.

    I second gaviscon. It creates a layer that floats on top of the acid. I didn't know it came in chewables. I could only find the liquid. Yucky but worth it.

    I bet that was scary. Hope you have no troubles getting reimbursed.

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited July 2016

    Love for you, Rosevalley!

    Enjoy the beach today. Glorious weather in California and may be in Oregon too. The beach can be so clear and beautiful - then the cold, foggy wind comes when the heat goes. It's a different type of beautiful, just not so relaxing.

    Glad your drain worked!

    Mine is clogged again. It's not a vacuum system, but the little hand pump on the line is familiar to anyone who's had breast surgery. Just couldn't get the fluid flowing again. Nurse coming at 4 PM and fingers crossed that clears it again.

    Happy beach combing, Rosevalley, Stephanie

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  • Kjones13
    Kjones13 Member Posts: 1,520
    edited July 2016

    toes in the water, a$$ in the sand...life is good today--especially since the drain worked!!

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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited July 2016

    Well I am sure your beaches are warmer then ours.. we about got blown off our feet today! We were down near Newport and it was 65 and sunny and GUSTY blowing sand.. we did not go down to the water.. could barely stand! Ha ha It was beautiful I had to buy a sweat shirt to keep warm. We did walk around and stop at a bakery. It was a gorgeous drive sunny back over the mountains and 80 degrees inland. Lucky you folks who live where beaches and water are warm and inviting. Thank goodness the drain worked I heard Stephanie's is acting up again. I hope they got it to work. My Cousin is so sweet she sent me a needlepoint that my Grandma made. It's very old and of a Pioneer girl in a bonnet. I guess they found it in storage and I put a note on it that I liked it. That was 48 years ago judging from the handwriting. Sweet of her to send it.

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  • Kandy
    Kandy Member Posts: 1,461
    edited July 2016

    Rosevalley, I am also at the beach. It was 96 degrees but with humidity felt like 112. I love it hot. I was taught today how to get pigeons to trust you. Once they do trust you, they never forget you. Supposedly they can even identify you by a pic. How cool is that? Pretty smart birds. Here's a pic of me with them.

    image

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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited July 2016

    Kandy- So cool! Well actually Hot where you are. I would like to be warmer. You are so lucky to be on a warm beach! I am still getting sand off.. it was crazy windy. I have heard that crows can identify people and remember who they are. Pretty neat. I didn't know pigeons could do it too. Sweet birds. Have fun!!

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  • PattyPeppermint
    PattyPeppermint Member Posts: 11,162
    edited July 2016

    Rose. Darn. I hate to hear the newest tx may not be working. I am glad to see you are still getting out and about and enjoying what you can get out of this life. Prayers for you and your family

    Hugs

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  • feelingfeline
    feelingfeline Member Posts: 5,664
    edited July 2016

    Kandy I remember reading a factual book called "Wait" about the art of delay. There was an experiment that had been done with pigeons and it proved that they had the intelligence to wait and pass up a small treat in favour of waiting for a bigger treat that would come if they passed on the small one, which requires thought projection back and forward, not just living in the present. Avian intelligence has been severely underestimated.

    Glad to hear you got to the wild and windy beach Rose. XXX

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited July 2016

    image

    Wild and windy here too in Ireland. Low 60s. Makes that cuppa tea and biscuit extra yummy.

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  • Kandy
    Kandy Member Posts: 1,461
    edited July 2016

    Feelingfeline, thank you for sharing that. That is really neat. They must be super intelligent.

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  • Brendatrue
    Brendatrue Member Posts: 1,830
    edited July 2016

    Ah, Rose, keeping hopes high that your next infusion will kick those markers back down and that your body will adjust overall to the new chemo and start behaving! I hope your spirits will continue to be lifted by immersing yourself in the natural world.

    Today I thought of all my nature loving friends, including you, as I watched some birds fledge their nest. I felt particularly invested in those young 'uns after saving them from a skink when they were just a few days old. I've also been dragging myself out in the heat to keep my bird, frog/toad, and insect baths filled with fresh water. I have been rewarded daily with the sight of birds, dragonflies and damselflies, frogs and other creatures cooling themselves and drinking. I guess I've been helping the skinks to live, too! Interestingly, as I was writing this, my dog sent out 5-alarm barks to notify me of a garden snake slithering around the front door. By the time I made it outside to investigate, the snake was no longer in sight. What amazing gifts we find all around us when we pay attention!

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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited July 2016

    Brenda I wish I had some hope of the Abraxance working but I feel awful today. Totally bloated, distended looking 7 months pregnant.. gas, unable to eat again. This is NOT working. I feel like my gut is stalled out and everything is fermenting and unable to move. This is miserable. If I feel this awful by Tuesday I will refuse the Abraxane as pointless. Right now on a misery index this is a 7. Talk about a fast decline... on sled again. Sigh.. well I wanted just 7 more weeks. Things are not going well. I just puked my guts up.. and feel a tiny bit better. So the puking begins again.. lovely. Well the last time my markers hit 850 all hell broke lose. Looks like I am in for the same ride as before - repeat.

    I am glad you can enjoy your yard and the critters. I love watching the birds. Trying to be positive. Ebru be safe in Turkey. Praying for your well being and safety. Prayers for all those in Nice, France.

    love to all..

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