STEAM ROOM FOR ANGER
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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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Bluebird, Wow! Thank you.
I think I might just leave that behind for those who might feel the need to gather and feel pressed to say something. (Minus the last line)
Just reading it takes a load off my mind.
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Bluebird- the problem I have is when they look at our income we look like we can afford it. They don’t take the 2500.00 we pay to my husbands ex each month into consideration. Nine more months then we are done paying her. Hope I live long enough to see that day. We’ll be dancing in the streets!
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That is rough, Dianarose. On copays they didn't ask my income, I don't think. I think it was up to the center assisting me to petition for possible funds. Have you ever tried them.
Nine more months for you to see that milestone and dance in the streets. If you don't think you will make it then dance in the streets now and have it video-recorded. Here is why I say such a morbid and dismal possibility............
I have nine months for the vehicle accident court case and the settlement to finally be had, they hit us, two speeding vehicles with the first in our lane headon, we were just navigating a blizzard at a very reasonable speed and wham. Now three years later still waiting for all the red tape and our own insurance company is balking on any payment for us under the underinsured motorist policy addition, and both vehicles were way underinsured. ugh. I will dance in the streets when this is over too. Meantime the end of this month the attorney is prepping me for a video-recorded deposition and all attorneys will be questioning me early February. The preparation measure is for just in case I die before August or cannot appear in court or talk. True crap. Our insurance company is suppose to have our back and the last thing they would want is to be taken to court like we are being forced to. The retired judge / mediator at the mediation said to our attorney to walk out and give it a few weeks and if they did not contact then court because they were being unreasonably unfair. I know they as in our insurance company are biding their time before they call uncle. But this recorded deposition also shows them how vulnerable my health and life is right now, not good at all as that is going to make my life considered as less worth as far as financial considerations, thus my attorney has said. I tried to get him to use the stage 4 and hospice card and he doesn't want to for this reason. But the video says it all once we get it done. I told him if the case is that far out I could be coming in on a gurney or in an urn. What do they want to do? I said. Just do something, I want this settled before I die! This was the answer to all our woes and problems. Video-recorded deposition from me. no stress. sigh and grin. and the source of all my anger on many many days. I have to let go of this too.
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Bluebird- the cancer center is trying to come up with the difference via a grant I didn’t use up last year. Worst case scenario the ex might get her check a bit late. Oh well.
Lawyers make life tough. Hopefully it will be resolved soon.
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Bluebird, I'm incensed. Your accident stuff should have been settled months ago.
You are right to be concerned. I know a woman, not on BCO, but she has brain stem cancer. In the last several wks, she has lost the ability to speak and can no longer move. She's bed bound. I have 20+ brain mets, so that could just as easily be me any day.
The thought that, "Well, she's sick and dying, so let's just drag this out...she won't need the money once she's dead..." It just infuriates me!
I know a man who was totally screwed over by the insurance co and attorneys who handled his case. He was rear ended by a construction vehicle while waiting at a stop light. His spine was fractured in 3 places. He was in the hospital for weeks and in rehab for months. His back will never be the same. The case should have gone to trial (he would have received more $ because the construction co was totally in the wrong), but the attorneys settled out of court. Poor guy was totally screwed over, but what could he do?
Hope that doesn't happen to you.
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DancingElizabeth, I love your new name!
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DianaRose, I just checked. PAN foundation MBC funding is closed right now. PAF says they are open in their BC and MBC funds. I have been PMing with a person here who is having a lot of trouble with PAF but it is worth a try. If you had a grant in the past with either foundation, they can usually be renewed. I did that once with a PAN grant. Income requirement is 500% of national l poverty level. With Ibrance, if no grant is available, Pfizer gives it to you for free. I don't know about the Xeloda manufacturer. I wouldn't pay the greedy bastards if I didn't have to. You can use the dregs of one grant plus a new one to cover a drug. Specialty pharmacies are good at these things. They want their money. One specialty pharmacy (Advanced Care Scripts) is actually the one who looks for funding for Ibrance (Pfizer) patients. ACS tells Pfizer when no grant can be found. They are all in cahoots.
Bluebird, love the poem. May comment in the other thread where you posted it.
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Bluebird-
Beautiful poem. Brought tears to my eyes.
Thank you for sharing.
Barbara
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Bluebird-love the poem. Thank you for sharing!
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Bluebird - That is a lovely poem; thank you for sharing it with us.
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My longtime friend from Canada had shared it on her FB page. I was so touched and drawn in. I decided it will be the first reading at my Life Celebration (not funeral) along with the Passage - Across the Sky song lyrics.
Passage Prelude and Across the Sky
It's not true that we come here only to live.
We come only in passing.
We do not own all that is given to us.
On this journey we eat, sleep and dream.
And whenever you are ready, oh Maker of Life,
I will come home to you.
And whenever you are ready, oh Maker of Life,
I come home to you.
Joanne Shenandoah & Lawrence Laughing
from Orenda CD
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That said, I was told 2 mo ago to call hospice and am just now addressing end of life organization and responsibilities and making contact w hospice. But only for just in case. I am angry I have to do this at all, but letting go can help. Am not perfect or a saint. Feel in the corner and if only I could put a smile on my face and be a Pollyanna, butthat isn't me.
Yes, Lita, exactly. Darned if I do die and darned if I don't die, at least in this situation. Just did not need the drug on stress of this on top of end of life "stressors" and man what we could have done with the cash back in our pockets that we had to spend at the time of the accident. We paid out of pocket thousands for home helpers coming in. The plan to pay off the vehicle we had then did happen bcz ins paid for that but it left us back in the old truck and running to all those medical appts and then the cancer hit again - all the cancer outbreak within a year was right where the airbag slugged me in the neck and chest. But that does not count, cannot prove anything in court. We had waited for our ins co to contact us after the accident, after all we had the policy for underinsured and it was their time to step up. They didn't and a few calls got no response from appropriated rep/reps. And we looked at each other and it dawned on us, we did not want to call an attorney BUT we were going to have to go up against our insurance company. oh man, sheet sheet sheet. And so we called an attorney firm that only practiced in accidental injury. Our nephew used them when injured as a law detective. And I think that now our ins co has a double grudge. That we were in the accident at all. And that we called an attorney. I feel pretty strong right now and am walking quicker than Hubby. I think I can pull it off, the not actually being hospice material part.
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Bluebird-I love that reading you have chosen for your eventual celebration of life. Really we should be celebrating our lives every day. That reading is a good one for every day. Thanks for sharing it.
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This kind of superficial crap really makes me angry
https://www.cheatsheet.com/health-fitness/breast-c...
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I've learned to avoid any cheatsheet articles. They require you to constantly click, then you find out that the article is worthless/misleading.
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That is crazy. How unhelpful either!
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Love the poems you posted Bluebird. Thanks for sharing them.
Angry as I read about how you’ve been treated by your own insurance company about your accident. I’ve heard similar stories from others regarding having to sue their own insurance company to get the benefits they paid for in uninsured motorist coverage. It’s so frustrating and you sure don’t need this stress on top of all else you are dealing with. Hopefully it will move faster after your deposition.
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Wondering if posters on this thread are aware of up and coming proposed changes to BC.Org site. Here's a link if you want to inform yourself.
Are You Aware of/Concerned about proposed BCO thread changes?
GP
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Had a rough day at work...and went to the store: And got called "ma'am" not once but THREE times by the checker!!!!
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in the south, maam is polite. I get called that. Its respectful imo.
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joy! What changes ?? I hope the threads don't change. I find the threads easy to follow and they are not broken!!! ~M~
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I think we all hate change as we have enough changes out of our control already
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Commented on the changes, took some time I did not have to try to understand these proposed changes and the reasoning. What I get is they are going to be happening anyway, regardless of what the members concerns and reservations are now.
The attorney yesterday said the ins co - my own ins co - wants me to have a physical medical exam by a doctor that is a pain specialist. He said nothing unusual. And so I am but it will be videotaped and Hubby has to be in room. And there are some tests not allowed like no stress tests, walking on machines, no nerve tests to my left hand, and others. I am in the it is what it is phase right now. I am preparing to review w attorney on the first deposition I already went through which was before the mediation that my attorneys were told by the retired judge mediator that it was best if they walked out of the stand off w my own ins company. There will be a second dep which will be for the court room if I cannot be there. The other attorneys will then be made very aware of my present condition with breast cancer and the prognosis being poor, hospice being a viable option whenever I choose. That's them, I am just here doing my best. But I do know my ins co is CRAZY if they let this go to court. CRAZY.
One more comment today, that is that there is no time to die. There is too dang much to do to get ready. So far I have decided to be in the palliative care program - not the hospice yet. Dr. said then that is the one, no questions since I already know what I want right now. And so I am going through all the list of what to prepare for my end of days. I am using the list Sas posted from Bon's info. Gotta get back to it, my weekend is reserved to get this accomplished. And resting and watching a movie or three. But in a nutshell, there is the legal, the logins, the copies of everything, the family tree hahahaha, the what to do with pets, the personal possessions, the stuff that gets trashed and doesn't need sorted through at all, the insurance policies, the bank account, the bills to pay off w my life insurance money, the garden stuff and possible gardening for the year and what to venture into and what to not even bother with, urns, cremation wishes, photos, recipes, thank you notes, letters to loved ones, and on and on and on. I want this all organized into manila envelopes and into my black zipper notebook and in the safe. And then I do not want to think about it again. Just read a good book and brush my puppy.
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One day at a time, Bluebird, that's how I handled mine. Death binder is done and it gets updated as needed. I have hired maintenance gardeners since dh hates yardwork. Best friend gets pierced earrings, dd doesn't have ears pierced and doesnt want them.
Not writing letters to anyone...if they don't know how i feel,about em now, they never will.
Headaches and dizziness much worse from brain mets. Amping up the cbds, and I had to vape for the 1st time in months so i could get a few hrs sleep.
Dh and i have a couple short trips planned. Hope I last a few more months.
L
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