Rosevalley - this is for you!

Rosevalley

Clemens Gardens is lovely what a wonderful tribute to a beloved spouse! There is healing and magic in a garden and people know that. Try being sad and miserable in a beautiful garden.. nearly impossible. Like trying not to smile when a baby giggles, children laugh or small animals are being playful. It lightens the heart. When my DD1 was in the hospital we walked around the garden at the Children's hospital and we did it daily ski jacket on over hospital jammies and admired the plants, sculpture and small birds that lived there. It helped us heal as muchas the testing and medicine. Good for the soul.

Ok you stage 4 folks will appreciate this. I went shopping for a few things for my youngest kid. Jeans on sale and got a great deal. I never buy things for myself thinking I am going to die within the year and what's the point? So I have lost weight and many of my clothes look like sacks.. one set of pjs fell off. I had to get rid of those. Kohls had a tremendous sale and I bought 4 shirts! I just can't believe I did it. They were crazy mark downs under 8 bucks each! (They had been 36$) So if I drop over on Friday's infusion I told my friend they are hers. She said I was crazy. But I keep thinking should someone with cancer everywhere and malignant ascites buy new clothes in the light of such a limited life span? I have to admit they look nice and feel good. Well as nice as a boobless, left arm bigger then the right (lymph edema), middle aged woman with thinning hair can look. Good thing I love being alive more then I care what I look like. Zoloft helps too!

Thanks for listening to me and for all your kindness, support and sharing. Coming here makes me smile. JLF I am going to ask about Taxotere if it might be better tolerated. Thanks for the heads up.

feelingfeline

ENJOY YOUR SHIRTS!!

You don't have to be Cindy Crawford to look good. Those kind of looks fade. There are people you know who are not pinups and who look great!

Blessed Mother Teresa always looked fantastic! She was always smiling!

You must forgive me Rose. I confess absolutely that I am here dishing out advice that I am not good at taking myself.

You wrote "Well as nice as a boobless, left arm bigger then the right (lymph edema), middle aged woman with thinning hair can look. Good thing I love being alive more then I care what I look like" - that is word for word exactly what I feel like! I know i am stage 3 NOT dealing with the worse hand you have been dealt.

ENJOY YOUR SHIRTS Rose. You did NOT buy them to be buried in. I am so happy to hear you bought them to LIVE in.

When I was dx-d stage 3 there was a Mum in my daughters school who had been stage 3, two years before me.

Her youngest daughter and my daughter started in pre-infants class together two years after her dx and that was when I first met her.

She probably saved my life as she was the person I mentioned my own symptoms to who absolutely kicked me out the door to get a doctors appt. She was one of a couple of real life angels who flocked to my side when I was dx-d.

Two and a half years ago she got dx-d with a recurrence. It was bad.

Her 4 daughters are all still at school, her youngest is now 10 same as me. She fought and she died last Tue June 14. She was 44.

I went to see her body in repose. This is not something I would usually do (our funerals have a closed coffin in church) but I felt really strongly that in some way I owed it to her. That seeing her remains must be done. It was an emotional kick in the guts because it was hard to remind myself that that is NOT my friend in a box, only the wrapping paper. She was a really groomed dresser (not like me) always had her nails coloured, hair coloured, and her remains were beautifully dressed. They had put her body in a lovely burgandy coat. I am sure that this was a good decision for her and her family.

Last night I told my son that if he is in charge of my remains he can put my body in a sack. Keep the nice clothes for the living.

Feel beautiful in your shirts dear Rose. Take all dem drugs. Please God you have a good experience Friday. Sounds like your team are great.

XXX Susanna

Longtermsurvivor

Feelingfeline, what a poignant story and beautiful tribute to your friend. Thank you for sharing it with us. Wishing you tender grief.

Rosevalley, I too find great joy and comfort with plants and animals. 35 years ago, while undergoing extreme medical treatments, I began regular visits to botanical gardens and arboretums - just to be in the healing environs. Without trying, the plant medicine steeped in me and I became a plant lover and docent.

We have two new animal friends on the farm - a goat, Ginger, and a steer, Mr. Mac. He's a very social guy and misses his humans. When he hears my voice from my window, he'll come to the fence and listen. I get to listen to his lowing more than he to me though. His voice is deep, lovely, so reassuring - except at meal time! And yes, he has a field, but hasn't gotten far past the barn.

Like you, life continues to unfold for me. I remain happy and at peace.

After a while of dressing plainly (bodily fluids, sleeping more oft than not, difficulty getting into & out of clothing), I've reclaimed my beloved beautiful clothes to wear all day as pajamas. Why not dwell in beauty - whether gardens, with our animal friends, in our lovely homes, with our loved ones or in imagination? Life is short - we choose what to focus our attention on - an infinite variety of expression that fascinates me!

Rosevalley, our bodies may be tattered and torn, but we meet the world in presence and beauty.

Sending so much love & light, Stephanie

PS, sorry, no photos today - the poppy was on my doorstep, but I've been living in decline recline.

susan3

yeah.that one bigger arm is a bugger. My daughter ended up with all my fitted sleeves. Boy did I like them. But left arm can't fit in them. So baggy it is

Zillsnot4me

Dressing is a challenge with a bingo arm and Buddha belly. I'm so glad you found something and bought it! I've gotten to love maxi skirts and a tee shirt, large please. I love the way they swish and you don't have to shave.

I know what you mean about shopping but... I'm still worth new (re: expensive) shoes so I can walk and play comfortably with my kids and not hobble the next day.

FF sorry about your friend. She was a true angel.

Stephanie. A steer! Goats, chickens. You are so lucky.

Rose you have such wonderful friends with good advice about Friday. With you in spirit.

Rosevalley

FeelingFeline- I am so sorry about your friend. What a great friend to get you into the doctor and on treatment. It must have been bitter sweet to have so many shared experiences and kids and have her die young at44. I agree with you about giving clothing to the living. But respecting the wishes and needs/ traditions of others is good too. It must have been hard to go to her funeral - hugs for you and a long life with your cat Arthur and daughter and hubby. You are quite the photographer. Ireland is beautiful.

Stephanie your farm and it's animals sounds like heaven. What a lovely place to live.

I just got back from taking my 13 year old toothless cat Zoey to the vet. She needed shots, exam and meds for arthritis. Gimpy old girl. She had such dental disease we had to pull all her teeth 3 years ago. She eats just fine and is a healthy weight. What we won't do for our pets. All my animals are old. 15,13,11,and 8. Love them all. I have one of my new shirts on and it fits so nicely.. soft and comfy. What a sale. Today I am alive and enjoying it. Although it is rainy, cool and the heat is on June 23!! The plants and trees are taking a lovely drink of water. My poor kid is at camp and must be freezing.. good thing I made her take a jacket and sweat shirts. Hoping tomorrow goes well... fingers crossed.

feelingfeline

Best wishes for tomorrow Rose. XXX

Jazzygirl

Rosevalley- I am glad you bought yourself some clothing that fits. Having clothing that is the right size, and make you comfortable is important.

Enjoy your new threads!

ruthbru

Good luck tomorrow, Rose.

Absolutely buy new clothes; it's called 'Retail Therapy'!

Kandy

Rosevalley, Buying new clothes is a must. Glad you did that. Clothes is a funny thing, if they fit and look good they have a positive reaction on your mental state. Bet you look stunning. Hoping and praying things go well tomorrow.

queenmomcat

I'm hoping not just clothing that fits, but clothing that looks nice. Just saying.

Loveroflife

Wishing you a smooth infusion tomorrow.

Mominator

Thinking of you, and hoping today's infusion will give you needed relief and added time to be with your dear daughter.

The yarn garden is blooming.

May you flourish and bloom as well this summer. Sending you much love and light and lovingkindness. Madelyn.

Rosevalley

Well we left at 8:30 got there at 10 - accessed, labs premeds and they started the infusion at 12:15 - same reaction. So I am allergic to Taxol and that's off the table. Tumor markers went down another 50 points. We blew through 2 full days of sick time for ZERO benefit. I don't even have an appointment to discuss what's next. When my markers go above 850 I start puking again. It's been heaven to be able to eat. I ate a toasted cheese sandwich today. Small victory that will be short lived. So now I sit and wait. The cancer wins and I will be with my head in a bucket barfing if they don't do something. I think taxotere should be taken off and maybe we just try something else. Any ideas stage 4 folks? I need to get through July and August. I am pretty disgusted and sad. I feel sorry for my poor DH... this sucks for him too.

Kandy

Sucks is an understatement. I am so sorry that Taxol didn't work out. I don't have any recommendations but I sure hope and pray they come up with something.

susan3

Rosie, I have been on both taxol and taxotere, don't know if that means things I have been on would be on the table for you. With my cancer, each chemo lasts 4 months than cancer wins. Right now, I should have been through all treatment options and waiting to die from the cancer.

18 months ago, I was put on , I thin, the first breast cancer drug they ever came out with. The newer nurses have never heard of it. CMF...fu5. That is what I have been on for 18 months! Doc has nooooo idea why it's working for so long, but we are happy campers. Maybe that is an option for you. An oldie but a goodie. Doc just pulled it out of his hat cause we are running out of options, and why not give it a try.

Good luck, love and prayers Rosie.

Rosevalley

My Oncologist is so sweet and just emailed me back she wants to try Abraxane. I am thrilled. It's attached to a protein and should be better tolerated. She's back from vacation and there is hope. Fingers Crossed folks. We need to wait for insurance and schedule. I am so hopeful maybe irrationally so. I mean this one dose of Taxol dropped my markers 100 points and I went from barfing to being able to eat a toasted cheese sandwich. This is huge from a QOL stand point. My labs look good -my total protein and albumin dipped and the ascites is the same but I can eat better so the gut cancer is lessening. what a roller coaster ride.

Susan I am writing down all ideas in my date planner to discuss! Thanks for the heads up on another treatment option. We have nothing to lose do we? Kids are huge motivator. I am so happy MO is back from vacation yay.

Rosevalley

oops did it twice

JFL

Rosevalley, so disappointing about Taxol!!! Why is Taxotere off table? I think it is worth a try. I have taken it twice, once early stage and once Stage 4, although I am severely allergic to Taxol. My onc has Taxotere in the plans for a third round once I exhaust all oral chemo and hormone therapy options. I didn't develop resistance to it, but took it in the interim while pregnant with Stage 4, as hormone therapy isn't safe when preggos. Not only was it safe enough for me, it was safe enough for the baby. I take it with minimal premeds and no steroids without incident. The other benefit is the infusion is hours shorter than Taxol because Taxotere is highly potent and only requires a small amount.

JFL

Rosevalley, glad to hear you spoke to your onc and Abraxane is an option!

Hummingbird4

Rosevalley, so sorry that you had an allergic experience again today! But I'm glad that Abraxane is a very good option and I'm hoping that your insurance co. approves it quickly, so that you can continue to get some relief! Keeping my fingers crossed!

Longtermsurvivor

(((Rosevalley)))

Surrounding you with loving healing light.

You continue to amaze me!

very much loving kindness, Stephanie

Loveroflife

Was hoping to see a good report Sorry Rosie. Your MO sounds like she is fighting with you.

Jazzygirl

Rosevalley- praying the new medication works. You have lots of folks here pulling for you.

mara51506

Like the others have said, so sorry to hear about the Taxol not being an option. Hope you can get the Abraxane and that it does the same for you that the taxol started to do. Can't tell you how much a grilled cheese sandwich would be appreciated when you haven't eaten for so long. Was in similar position last Oct/Nov 2015. Not as long as you with the nausea of course but that was one of the first things I ate when finally able to myself. My thoughts are with you.

Holeinone

Rose, Bad day.....then "good news". The roller coaster of Breast cancer.

Happy that you get another option.

Rosevalley

I didn't know that all these drugs were variations on a theme... using different delivery systems to get into our bodies. Taxol, Taxotere, Abraxane etc. Cancer drugs never stop surprising me how they are tweaked to find their ways into our cells. Learning something new every day. I am happy there is a taxol I can take since it clearly works against my cancer. .. for now anyway.

I am a little frustrated with my body's acceptance of these drugs. I seem to always have some issue. I had forgotten that the 3rd dose of dose dense Taxol 2007 made blisters break out on the soles of my feet. They dropped the dose by 33% for the 4th dose and I had no feeling in my feet at all. It took months to return and the feeling is not the same. The fluid they gave me today had given me pretty severe edema.. had to get out the lasix to get the fluid off. Way too puffy.

I met a neighbor today undergoing breast cancer treatments, brain, bone, liver... we connected instantly through our gardens and mutual admiration of plants. We live just around the block from each other. She is taking a combo that I tried and I told her the taxol story. We both love the same types of shady plants hostas and rhodies and our husbands were commiserating. Small world. We are probably near in age even. There are just tooo many of us with stage 4 cancer. It's awful. I liked her and hope she does well and we meet again to talk. We have lots in common, sadly. I took 2 walks the steroids make me antsy. My neighbor said all the brain radiation makes her tired. Cancer is hard. They heal in their garden just like we do at our house. Make me well or at least feel better dear plants - heal me. Calm my mind, clear my thoughts and capture my imagination dear garden, keep me grounded and still to grow. Plant therapy. Good night all. (((hugs)))

Longtermsurvivor

Oh dear Rosevalley!

Woke up and found this quote that reminded me of you...and here you are using a garden metaphor to describe your chemotherapy treatments.

Here's the quote:

"The bone marrow of a healthy human body is like a beautiful garden with a variety of healthy flowers--roses, tulips and so on," he said. "The cancer is like a weed. It grows too much and too quickly, and it prevents all of the other plants from growing and staying healthy. We recommend using chemotherapy drugs to treat it. These will kill both the weeds and the beautiful flowers, but hopefully they will also allow new seedlings to grow, without any weeds."

Happy Feet

http://pulsevoices.org/index.php/archive/stories/7...

It's written about AML, not breast cancer, but we too want restore our garden to health and well being. Or at least nurse along our beings for as long and as well as possible.

Sending so much love always, Stephanie

Zillsnot4me

Sorry Rosie about the taxol. Hope the swelling and ancy feeling is about gone. Glad you found someone close to commiserate. Will be good for DH too.

Gardens are peaceful. Best wishes for an appt next week. It sounds like theremight be a few tricks left in your MOs bag. Eat and savor!

Noni

Rosevalley, sorry the treatment didn't work out for you but glad there is another option.

I tolerated taxol okay, but it didn't work. I saw my MO last week to discuss my latest scan (progression) and the failure of tamoxifen. I went in to the meeting completely hopeless. I read the report ahead of time and knew what was going on. My MO found a new trial that I qualify for (EAY131). Chances are not great that it will work for me, but I was elated that for the first time in months I found reason to be hopeful.

So yes, sometimes the hope seems like sheer fantasy but you gotta embrace it when you can.

Huge to you, and fingers crossed that insurance is speedy.