STEAM ROOM FOR ANGER
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I gave my old car to my son and asked my tax accountant if I needed to put a price on it and pay taxes. She said no, not necessary
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Bluebird and company....I have one best friend who we fall in and out of touch but she's the ONLY one who jumps into the trench with me...muddy, wet, depressing...ok, trench warfare...why are we pissed and who or what do you want to rant about it. Sometimes being in a black foul mood is so called for and feels so RIGHT. It doesn't usually last...but it's like when I try to put it off, other people work so hard at "keeping it on the up and up" We'll deal with it, It'll work out, it's God's plan, if the Lord leads you to it, he'll lead you through it...my LEAST favorite of these sayings. Attitude helps...fake it and keep the idiots from crawling up my rear to cheer me up with a pink teddy bear or bracelet. PLEASE. Rather go to a movie, get to go or go for a hike. Give me a break.
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Bluebird- my daughter got me a shower chair and when I feel weak I use it. Works great. I hate taking s shower as I have to disconnect both leg bags and cap off the tubes. It’s a pain in the ass! I hate have these tubes and bags!!!!! Yesterday one leaked and my jeans were soaked. Most people have no freaking idea what we go through
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Indigo, didn't you know that we women are supposed to smile so that men will feel good?
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ShetlandPony , lol, yes; God forbid we disappoint by not showing our pearly whites and upsetting their mood
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I feel like a 12 yr. old trapped in a 50 yr old body!!! Where did all the time go!?!
I feel like my young-healthy-carefree life and body - is gone. It's hard planning ahead. I don't even want to plan vacations - because I don't know - if something will happen and that will be that. There are things that I think about doing or trying - but - I'm afraid to do them - because I don't want to get attached to anything and have it taken away from me - if I become unable to do things...
I want to live - but - I'm afraid to...
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You conveyed what you feel so well, S67. I know that one day cancer or cancer treatment will take away the dancing I love, but I decided it is better to have loved and lost than never to have loved at all. The other thing that helps me is to have a plan B. If I can no longer dance, I will turn to gardening, transferring the time and money I now spend on dancing to making a beautiful garden, hiring a garden assistant to help where needed to implement my design. There is a stage iv lady here with troublesome mets and a husband facing cancer surgery, and they are planning on two cruises this year! I'm sure they bought good travel insurance.
I wonder if changing your screen name would help you move away from feeling so scared. I don't mean to say you should not be scared sometimes, as we are human beings, but there are other things to be like dancin', cruisin', cookin'... What's your secret desire? Can you take a step toward it? Defy cancer!
I'm sorry, I know the steam room is for rants, but I really wanted to offer some encouragement. I hope that is ok.
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I know exactly how that feels wow! What a day this has been. Can't wait to sleep. It's the only place I am safe from thinking about cancer! ~M~
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I can’t even enjoy tv. Almost all the commercials are for some kind of dam drug! It instantly reminds me of my own situation. Why the hell do they need to waste so much money on ads for drugs. Shouldn’t they just educate the doctors. Maybe spend the money on research or to bring the cost down. It’s out of control
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Thanks, we ended up gifting it to him, 30 something dollars to tranfer title.
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wow, Raidergirl, I love your comment "the person who has the cancer gets to say when they are grateful"
I'm pissed off because since I've been introduced to the cancer world, all the doctors keep downplaying my cancer and telling me it's so "easy" to treat. "Stage one" "early stage cancer" etc etc. Someone, not an oncologist, even told me it's might just be a blip in my life. I listened but I just had this feeling, in my gut I kept waiting for the shoe to drop. I was right, today it did. It's not just a blip. Just came from the MO and he has told me that contrary to what everyone has said and thought so far. I will have chemo and radiation and hormone therapy. Luminal B, progesterone neg est positive. And to top it off, they came back with a new take on the pathology review, my cancer is not stage one but stage 2. Now I have to readjust. FUCK
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indiahood, I was er 95% and pr less than 1%. I had one ilc and one idc with lobular fatures, both mitotic score 1 amd just barely grade 2. Each tumor was 1cm. My oncodx score was 34. I didn't do chemo I took hormone inhibitor anastrozole and exemestane.
I will post a link showing some interesting results for you.
I am 6 years NED
http://www.cancernetwork.com/articles/anastrozole-...
Should discuss with your doctor.
https://www.cancercommons.org/tag/luminal-b-breast...
Anastrozole is proving very effective for luminal b hormone positive cancer in former link but they are also able to boost effects of anastrozole.
https://www.researchgate.net/publication/264088331...
This last link you need to read through to the end but AI drugs are proving much more effective than tamoxifen in er+, pr- individuals. This is dated 2014 the first link I gave you is 2004. For 10 years the seems to be the same conclusion.
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As I sit and wait to go into the lab for treatment (zometa)....I hate how everything is white and light wood and glass in this new building. Boring. Bland. I feel like a lab rat.
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I feel like whatever treatments we go through - whether we are in trials or not - it is still trials, the info can be used and should be. Though it is not. Takes them years to provide updates on SEs that weren't obvious in the trials, etc.
Read all the comments from my last post to here, so much insight.
Meow - that is a decent gift, and now not on your insurance. Good deal, glad your hubby budged.
Dianarose - I can't imagine. I feel for you. With the iffy-ness of possible diarrhea which has hit when on the back roads and no toilets - ugh - I still carry a change of clothes and a box of baby wipes in case. Everywhere, most of the time.
What I thought I looked like. I don't even have a photo of me in the last year, the light and health is gone for now. But soon it will be back. I believe that off the txs that caused the terminal nose-dive that I couldn't handle, I will regain the zing and look better soon too.
Until I was 58, last year, I felt and imagined that I looked like I was 30, I think that was when pic was taken, really I did. Then one day I saw the old woman in the mirror and realized I had been forced into my old crone years. I thought when I got to be an old crone I would at least have cascading grey hair and bright eyes and the energy to do everything, even if I was slower. This is unacceptable. But here I am again picking myself up, dusting it all off and trying to give it another go anyway, whether I was told to call hospice or not.
I am not being morbid, really. And when I die I will look like this ---- I think we could all pull out our favourite photos and imagine ourselves there again. Here I look so much like my mother.
Scared - I used a username called Essa for awhile. I got slammed by some who did not like my point of view and treatment choices and so I turned my name to Mad-Bluebird and used that icon. But I got over the mad and and running on the defense and wanting to punch people in the nose. So now am Bluebird-DE. My initials. Have collected bird statues and porcelain birds for years, love the bluebirds too. I think of the bluebird of happiness. hahahahaha well, maybe not all the time. So, see you can change your username and it will still keep all your posts, old ones will have the new username. If you want to do that.
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Thank-you Everyone - for being such a great ear and support...
ShetlandPony - I think I will look into changing my username!! I love dancing...
Micmel - I - too - feel like sleep is the only break I get from cancer. Sometimes - I can't wait until the house is quite and I can sleep...
Dianarose - I don't like how there are so many commercials for things that don't even seem like a real problem. I mean - "dry-eye" as a health issue?!?! I hate that commercial.
Bluebird - You are very pretty!!! I'm 50 and I too get surprised sometimes - when I see the wrinkles - it doesn't look like me!!! But, then so much of myself, is not myself anymore...
Ok - going to work on figuring out a new username...
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Just changed it...
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Bluebird you are beautiful. Don't let anyone tell you otherwise.
Dinarose-love the comment about all the drug commercials and "ask your doctor". Really??? Do you think they are so dumb they don't know what you need? And of course then they quickly read side effects which make you wonder why anyone in their right mind would even take that stuff!
7of9 love that "lab rat" comment! Lab rat and pin-cushion!
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I’m pissed and depressed at the same time. My tumor marker had been coming down with each cycle on Xeloda until now. Went up after this cycle. Sucks
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Sorry to hear about that Dianarose!!! I've heard that - its very easy for them to fluctuate - for reasons - OTHER - than cancer. But, I know that's little comfort... Tumor-marker tests create a lot of stress...
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DancingElizabeth, love the name by the way!
- This “new normal” of ours is something that may well take a while to get used to and it can get overwhelming at the best of times. For me, the way I cope is just by taking one day at a time. As for vacations, maybe start off by going somewhere that is not too far from home so that if you do feel unwell or uncomfortable you can get home within an hour or so . Sometimes just getting away from the house and our usual routine for a couple of days can do the world of good to our well being!. I love Music and it makes me happy so I make sure to stick the headphones on everyday and crank up the sound and sing to my hearts content and for a while - even if it’s just for a little while - I can forget all about breast cancer and this “new normal “ of ours . . .ShetlandPony - very well said and I like the idea of having a plan B!
Micmel - yes, sleep used to be my place of solace too but now thanks to the letrezole, if it’s not the hot flashes waking me up 2 or 3 times a night then it’s just plain old insomnia - I have perfected the art of counting sheep!!!
Dianarose- I agree, recently it feels like every other commercial seems to be an neulasta onpro commercial !
Meow - I bet your son was very grateful for the car
Bluebird - you look lovely but I know what you mean; when I look in the mirror I don’t see the person I was just a year ago - damn cancer really does do a number on us
Jumpship- I have my eyebrows back and my upper lashes back but I don’t know what the hell happened to my lower lashes - thank goodness for eyeliner!!
7of9 and bcincolorado - so true; “lab rat” and “ pin cushion” sums up just about every doctor and hospital visit these days
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I’m glad to know I’m not the only one who has aged visibly in all this. I used to love having pictures taken. Every time I got together with friends. Now, I see myself, and I think WHO is that? And why does she have black eyes? I do t like having my picture taken now. I used to look 10 yrs younger than I am. Heck, I got carded going out until I was almost 40. So what to do? I need a haircut and then I’ll color it. I guess I should start wearing makeup again. Bleh
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The commercials that bother me the most are the Stand Up to Cancer ones. Especially the one with Jimmy Smits on immunotherapy drugs. They are all thinly veiled commercials for big pharma. This one is "supported" by Bristol-Meyers Squibb.
"PSA campaign, supported by charitable donation from Bristol-Myers Squibb, raises awareness about the promising new approach to cancer treatment that uses the body's own immune system to fight the disease." from SU2C website. Do those do-gooder actors not know they are being USED by the drug companies?
DancingE, love the new name.
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I did a paid survey for Ibrance and did speak up about why not use the money wasted on ads and find us a dam cure or at least better treatments.
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I also look in the mirror and look like The Crypt Keeper. The skin around my eyes is so crepey and so many wrinkles. I hear women say that being ON hormones keeps their skin much nicer. You'd have to expect that the reverse when you BLOCK your hormones. I love the look of aged, rustic leather. But not on my face! Thinking about procedures. Or new carpet. Toss up!
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I don't wear makeup anymore. Wash and go hair. I stopped colouring my hair back in 2013 and before that it was once a year. Now the hair in my wide-toothed comb looks like grey-lilac. Seldom use shampoo, but do all sorts of tricks with conditioner and water. Hair and face and some body limbs get coconut oil rubs. Coconut oil is my favourite "makeup" as it leaves my face looking refreshed and w a glow that seems healthier at least. Very natural now. Yup. Not even a bra now, I use scarves around neck to cover my bralessness and lopsidedness.
DANCINGELIZABETH - I really like that. I used to love dancing. Still would but stamina keeps me down right now. My favourite dancing is stepping.
Dianarose - but how do you FEEL? I know some people have TMs that tell them the truth. I didn't. Mine were perfect for three years even with huge honking lesions growing in my liver and cancer spreading all through my lymph nodes in my chest. So they lied and it was costly to my health I guess. But when this first started the CAs or TMs were telling the truth. My labs are always pretty great no matter how bad I am doing. I wish the doctors and nurses would stop looking at the read outs and look at the patient and listen to us more.
Before my primary oncologist moved to Alaska he told me he was learning to listen to his patients and not depend so much on scans and labs. My story was a huge influence on him. But he said that and then his habit and training ended up being hard for him to really change. He had to be reminded. Now he is in another clinic and training too under a holistic doctor to add to his oncology practice later. I hope he is learning to listen and look closer to the patients. I gave him some books when he left, they were all on just that theory and flower essences and homeopathic training and how the patient has their entire story right there, it is mapped into their body and throughout their symptoms. No scans or labs really needed. Though oncology is a much more complicated practice. I miss him a lot.
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Bluebird- I felt like crap the past cycle but feeling much better my week off. I have had a ton of stress so it's hard to tell what made me feel so crappy. I get an upset stomach a lot and some acid reflux which I take meds for. When you have belly mets hard to tell if it's from something you ate, nerves or the cancer. When things start to go wrong my immune system de to commit suicide. Has almost killed me twice. So afraid of it happening again and my MO says it will. She could have left that part out. Everyone's body reacts so differently. Some ladies have tumor markers in the thousands and when mine gets to two hundred I'm in big trouble. The stress of it all is the worst part. I truly feel like I'm on borrowed time as I have been stage IV for years now. I just want Xeloda to work for a long time. Not ready to leave my family. None of us are. This just plain sucks!! Where's all these new great drugs and trials?
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Diana...I was on Xeloda for a little over a year, and every cycle - I swear - was a liitle different. Sometimes I'd get horrible, explosive diarrhea, sometimes I'd get nausea. Adjusting the dosage from 2 wks on 1 wk off to 1 wk on 1 wk off DID help as it was a lighter load on my system.
My sleep was also affected by Xeloda. I hated that. At least twice a week I couldn't sleep at night. If I I don't sleep enough it provokes my anxiety.
Hang in there!
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Lita- nice to hear from you. I had tons of nausea last cycle. I had stomach cramps too. I haven’t had trouble sleeping. I sleep 10-12 hours then still feel tired. I asked about changing to the 7 on 7 off and they don’t want to change me unless it’s not working. My platelets and hemoglobin were both good so I’m to stay on the two weeks on cycle. I’m lucky that I have had no issues with my hands or feet yet. I didn’t realize how expensive Xeloda was till I called for a refill. You know the new year new deductible thing. The cost is over 3200.00 and insurance will pay 2100.00. Still leaves a big chunk. My cancer center is seeing if I have enough grant money left to put towards it. We are very expensive ladies lol.
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The new great drugs get held up in the approval line after they prove they will save thousands of lives in a year. The trials - well don't know about you Dianarose but I was told by the second-to-last MO that I was not a candidate for any trial.
If not grant money from the cancer center, see if Xeloda has a co-pay assistance program. Or try here, they helped me a few years ago when I was struggling to make copays on Faslodex injections. They copay on treatments, not on scans or rads or appointments. Metformin, AIs, chemo, perhaps others rxs that can be used for breast cancer. https://www.copays.org/resources/breast.php Perhaps ask the nurse navigator or medical financial coordinator at the center to get it started for you. Mine did for me though she did ask permission first.
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Read this poem today and want to share it. A lot who are on insomniacs are on here so am posting it here. Very cool.
She Let Go
She let go. Without a thought or a word, she let go.
She let go of fear. She let go of the judgments.
She let go of the confluence of opinions swarming around her head.
She let go of the committee of indecision within her.
She let go of all the 'right' reasons. Wholly and completely,
without hesitation or worry, she just let go.
She didn't ask anyone for advice. She didn't read a
book on how to let go… She didn't search the scriptures.
She just let go.
She let go of all of the memories that held her back.
She let go of all of the anxiety that kept her from moving forward.
She let go of the planning and all of the calculations about how to do it just right.
She didn't promise to let go.
She didn't journal about it.
She didn't write the projected date in her day-timer.
She made no public announcement and put no ad in the paper.
She didn't check the weather report or read her daily horoscope.
She just let go.
She didn't analise whether she should let go.
She didn't call her friends to discuss the matter.
She didn't do a five-step Spiritual Mind Treatment.
She didn't call the prayer line.
She didn't utter one word. She just let go.
No one was around when it happened.
There was no applause or congratulations.
No one thanked her or praised her.
No one noticed a thing.
Like a leaf falling from a tree, she just let go.
There was no effort. There was no struggle.
It wasn't good and it wasn't bad.
It was what it was, and it is just that.
In the space of letting go, she let it all be.
A small smile came over her face.
A light breeze blew through her.
And the sun and the moon shone forevermore.
Here's to giving ourselves the gift of letting go…
There's only one Guru ~ you.
―Rev. Safire RoseWILD WOMAN SISTERHOOD
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