STEAM ROOM FOR ANGER
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The whole boobs thing is so ridiculous. It is CANCER that could kill you, they just don't get it.
Idiot commercials with baldness the focus but look your hair grows back, woman are strong, make me puke in the pink bucket already. So infuriating, this disease KILLs and it is extremely unpleasant and depressing. We need a cure that preserves are health and QOL.
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Boob Lives Matter! We should rise up and protest. How dare they. (not sarcastic).
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Facebook is flooded with bracelets, tee shirts etc.. Nothing goes to breast cancer. As long as these stupid people keep buying it they'll keep selling it and getting rich.
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I wake up and my mind is spinning with all the medical professionals that have let me down. They all think it is the next one's job. Medical assistants that don't get the clues or write them down, nurses that shrug it off, phone nurses who lied......
The specialty practices that pass you off to the next and the diagnosis is finally made from one but then you are sent back to the one before last. I am truly pissed. I feel like I don't have a doctor or treatment for this. After all these. This meaning I was finally diagnosed today with pulmonary arterial hypertension (PAH) and enlarged right heart valve and I think he said enlarged heart on right too. He said opacities in right lung too. That was on the phone, I see the rheumatologist who took the steps to find out the issue on Monday. But he wants me to see the cardiologist or pulmonologist for treatment for this part - he will be treating the scleroderma / lupus which is the cause. I only have a pulmonologist and the appointment is for October 11. A cardiologist would take two to four months to get in from what I understand around here.
Fortunately next week I see rheumatologist on Monday - oncologist/osteopath/internist on Tuesday and my DNP Wednesday. Hoping I won't end up in the ER for this before I see them for help. But tonight was not so sure. How the hell long am I supposed to hang on and wait to be treated? Geez. Someday I will be clear enough to list the mistakes and missed opportunities along the way.
I have great hope for the new oncologist / osteopath / internist / hematologist. If all goes well I may follow him from the practice I am at where he is filling in for two week and onto his own practice not too far from here.
And I am eternally grateful for the new rheumatologist who looked at the worst it could be and it was - he did not mess around.
I am wondering if the past hormone targeted therapies contributed to this PAH worsening. I know the radiation last spring certainly did.
PAH aside - the possibility of mets because of some swelling in supraclavicle and under breast has me getting a PET CT - and the headache / discomfort and unsteadiness means there will be a brain or MRI - both soon.
My puppy just came out of the bedroom to find me - that makes me happy. I wish I could take him for a walk. Danny Boy is his name. About 9 yrs young, my puppy. I never let anyone tell him he is old.
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Blue~I am sorry that this is happening to you. I hope finding some new professional doctors will help you figure out what's going on. I know a lot of medicines make me feel dizzy and unsteady! I am going to send good vibes to you, that you are on the path to the knowledge you need and the help you deserve ! Hugs ~M~
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BeachLover - the DE is initials for my name. First name Diane. He is built for hugs - this morning I brushed him and like always got another puppy out of him just in fur. The undercoat is dense and very tricky to get it out.
Thanks Micmel and BL - I am looking into a family physician at the DNP's office - it will alienate my nurse but she has been ineffective to date on so many things. Except diagnosing the hypothyroid in the beginning, for that I thank her. I just need someone in the core of this with me to navigate all the care. And someone to be on call when I end up in an ER if this goes badly. There are good days and today is one of them - off Xeloda for a full day now and breathing well right now. Going out to enjoy the autumn day!
I like this photo from the road we end up on when we drive out the lane. B U M P in the road - just a bump. Not over the cliff - just a bump.
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Diane, feel so bad for what you're going thru.
Damn cancer! I know a couple of women who now have cardio/pulmonary problems that were BROUGHT on by chemo and AI's. That's one of the risks we all have to take when treating this damn disease.
Hope you get some relief soon.
L
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Bluebird- sorry for all you are going through. I had to have my 4th echocardiogram today. MO wants me to see cardiologist too and can't get in until the end of November. It's crazy!
Lita- nice to see you posting. Praying for you every
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Diane, I too feel badly on your behalf.
It sounds like you need a doctor who is in charge. Someone who knows all the meds and all the problems and adjudicates what should be done. That is often someone's PCP, but in my case it's my oncologist.
At one point I was seeing four doctors and getting conflicting info. I finally said to my onc "who's in charge here?" He said he was. Any questions should be directed to him and he'll get in touch with the other doctors if it's necessary to coordinate.
Do you have someone on your medical team who can fill that role? The rheumatologist maybe?
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Actually Pajim - I am hoping to really connect with the fill in oncologist Dr. Duque. He will only be at the center for 2 weeks. I see him on 12th. He is also an osteopath and I have always really really wanted an osteopath of my very own. Maybe just maybe. Someone who is trained to look at the entire person and history, not the lung or foot. or breast.....
Thank you all for the thoughts and wishes.
Now - do you know what REALLY GETS A BREAST CANCER PATIENT SPILLING THEIR HEAD IN CIRCLES?!
When the repost of the ECHO and the high definition lung CT to check for pulmonary hypertension is mailed to them. They read it and see on the CT that there are no NO NO CHANGES to any of the cancer lymph node masses and no changes to their severely compressed bronchial airways and main airway. And they are sitting there for an hour in a huddle and thinking, omg the Xeloda really is not working. The radiation did but now the cancer is growing strong.
AND THEN they slowly realize the April 2017 ERoom CT of the lung was sent and it was compared to the rads CT from the week before.
I did not receive the current CT of my chest and lungs. So that is both the good news. And the bad news. They screwed up and my lymph nodes may well have changed for the better.
ARGH!
Forget the church part - I love the sign. Blissville 2 miles. or 200?
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Aaaggghhh!! I'm already on my second chemo and why the hell dis I just find a mass in the other fuc$ing breast?!? WTF!!!!
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Just here to scream!!! Lost my hair for the third freaking time!!! It's harder each time!!!! I look like Yoda!
I look around the chemo room and there are people I see each week and they still have their hair! I always get the bald chemo. Just plain sucks!
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Bosumblues- I will always be on some type of chemo. I think that's why this time was the worst. Probably never get it back.
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I'll probably get a wig for the late fall after I'm done with brain rads. Will go to one of those Cancer society places to get a free one (don't know how much longer I have to live, what with more than TWENTY brain tumors wreaking havoc in my cranium.)
It's still TOO HOT here to wear one right now. Even with my boyishly short hair, the back of my nape and hairline sweats a lot. My pillow case is covered in sweat at night, too.
I have a couple of cancer-themed baseball caps, so I'll just wear one of those after my head heals from the bad fall I took on Monday Sep 4.
Then again, I might just make a Sinead O'Connor fashion statement and go bald, wearing cool earrings, keeping my eyebrows up and a nice, bright lipstick.
FUCK YOU, Mr. Cancer!!! And I don't appreciate that you tried to take me out a couple of days ago went I bent over to pull some weeds in the back yard. (Everyone says I'm damn lucky I didn't split my damn skull open and only got some scrapes and two nasty black eyes.)
Rant over,
L
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Lita~I have been thinking about you and I have to say you're strong, witty, clever, funny and so precious! I am always sending such strong vibes and wishes for you. I love your attitude and kindness you have always shown! We love you Lita! Hugs hugs hugs! Who doesn't love raccoons!!??
Dianarose~ you know how my heart feels about you my sweet friend. I am so sorry this hair bullshi* is happening to you again. There are no words I know. I remember how it feels. I wish I could take it away. From us all!!!! I know you have heard it all before, and it doesn't take the sting away. But you're loved so much more than for your hair. It doesn't change how you feel about it., nor how I feel. But you need to know you're very loved! Very! Hugs my sweet friend. ~M~
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Ok, I am freaking out this morning! I get the results of yesterday's echocardiogram, have another round of A/C and will find out what the plan is after I finish A/C next week. It's always this uncertainty and change that gets to me. I try to stay calm but that never works for me. Took half of Xanax. Hate doing that but can't seem to get a grip. Does anyone else get like this? PA said she didn't want me to take anything when I get stressed. Seriously, walk in my shoes lady. I don't know why they think this is all so easy to cope with.
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Diana
You are IN MY PRAYERS!
Damn you, Mr. Cancer!!! Can't you just leave us the hell alone?
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Dianarose-many of us have a hard time getting a grip on this crap- particularly the uncertainty. But somehow, we keep plugging along. Perhaps out of necessity, perhaps out of spite. It doesn't really matter, we just keep plugging. Please know that we get it, and that we're thinking about you! And the hair thing really does suck.
Lira- I've followed your posts over the last couple of years and have admired your spunk and sense of humor. You go, girl! I'll be joining in on Sunday evening.
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MO decided that I would do the A/C today but not next week. Instead I will be starting Xeloda. I wasn't going to argue with that ! My echocardiogram was good so can cancel appointment with cardiologist. Hurray!
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Ginger - hopefully it is giving a last hurrah before the chemo gets it for good. My oncologist told me the dying cancer cells can hurt as much as the ones growing.
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I think the spite part works best sometimes. I have an ex from hell that I surely want to outlive. I have some mean step kids who would love to see me out of the picture so they can get whatever they want out of dear hubby.
The other part of me that fights is I am happy with my life other then dam cancer! My DH and I have only been married 3 1/2 years. He's been my life's biggest blessing. We have a lot to do on our bucket list. We had booked a cruise to the Bahamas now we have to replace that with something else. We are thinking Myrtle beach for Christmas. We have 9 kids and will have 15 grandchildren by then and it's just too stressful at Christmas so I'd just rather go away.
Hope everyone has a wonderful weekend
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Hey, Diana...that MAY be the ticket for me, too - just GO AWAY for Christmas!!!
I don't even know if I'll even be AROUND by then with these darned leptomeningeal brain mets (those are supposedly WORSE than the actual brain mets, cuz they're in the brain fluid and harder to treat).
Hmmm...so maybe Mendocino?
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Lita~ you have so many people sending you good vibes! So many people care for you. You're amazing. If there is power in numbers. You should sail through Christmas! Thinking of you!
Diana~ I adore you!! Whatever you do decide for Christmas. Just make sure it makes you and DH happy!! Make those lovely memories with your precious DH!!
Hugs to both ~M~
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Lita - I see you fell over while weeding. No more of that weeding for now! And no more falling.
I haven't been into the garden since May due to the sun sensitivity (lupus flares too) and no stamina with the breathing issue and xeloda. I do have a lot of pots on the deck with peppers, cosmos, greens and those are all ratty looking now. Except the peppers, they are decent.
Thanks for the platform, got something to bitch about.
I don't like spinning. None of us do. And we are set to just spin wjile it all keeps going on around us and for us. I always planned things though I had a great spontaneity about me at times too.
Next year I don't know what is coming. Garden - no garden - pots of yellow cherry tomatoes, mini peppers and cosmos to take with?
Cuz - We are either moving or traveling if health holds enough. And some travel this autumn. Maybe not far, just day trips - but that is mostly because our dog is having issues and won't get in the Denali. Wobbly, older, can't jump like he used to. He wouldn't be able to go at all so just being home in a few hours is all we could do then back to him. I hope that is not the way it turns out though.
This is Danny Boy 4 years ago in back of Suburban. He laid on back seat like it was his limo. He is 160#, about 9 yrs young.
The 2012 GMC Acadia Denali was purchased in June 2017 so he can get in and out easy and he hasn't been in it once. (And me too, get in easier.)
He wants the Suburban and when he tried the Suburban, again he fell short and had to be lifted. So now won't try at all. Working on a ramp and taking out one back seat in the Denali to see if that helps him try it. If he will get in and is good on energy then we will go for a night here and there. Or for a long haul. The planned trip only in part, like into the UP in MI or to mid-PA.
The plan was a round trip out of IN into OH and through mid-PA, up to Upstate NY, over to VT, into ME and Nova Scotia, Prince Edward Island and back through southern Canada to the MI UP and down through MI. I had some cabins chosen but not booked. A few weeks here and there. Three months to accomplish w us back by Thanksgiving. But I have been too sick.
The ticked off part is.
- This travel was planned for March 2015 when Hubby retired early since I didn't know if I was going to live or die and it was time to just go. I felt better then than I do now.
- And February 14, 2015 we were hit head on by a driver and laid up with broken stuff for months.
- Then the cancer hit me hard and wasn't caught and I spent five months spinning while trying to figure out what was wrong if it wasn't cancer.
- Then it was caught and so the tx and rads.
- And now here I am with my dog not able to go and I am not going without him.
- And I may be looking at infusions if the Xeloda is not working, swollen all through supraclavical like before radz in May, tender lump under breast where it had severely compressed my bronchial and thus collapsed upper lobe on right lung. Seeming like a rerun right now. Will know from PET CT soon. And when I get to see the high definition chest CT that was not sent to me this week, wrong one sent so I am waiting for Monday to see at rheumatologist's office instead.
I see it is not so easy to go out there and live your dream and best life when you keep getting hit with a ball bat.
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Lita,
I am heartbroken as well and will keep your family in my prayers.
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Update on daughter - her spouse visa was approved. She will leave September 25 along with her dog. For the UK to her husband there.
And I may never see her again except on Skype. I have to roll with the waves and this is one I am trying to stay in the moment on.
Meantime have been told tests showed I definitely have an enlarged heart and pulmonary hypertension. The lupus, my rheumatologist said, is damaging my heart. Cardiologist tomorrow.
Oncologist today - I love him, just what a gem, how perfect can an oncologist be. There are plans, tests being done, he is sure there is great improvement.
So far the new doctors coming into my life are helping with old fears and resentments.
Dianarose - I understand your dilemma and the bucket list being changed around. Once I know more about health and recovery I will work on my plans again, only differently. Roll with it, right?
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Oh, bluebird, you are in my prayers!
Heart conditions can indeed be managed effectively these days. My oldest brother, who's still kicking, has been living with a pretty severe case of congestive heart failure and a pulmonary embolism for more than 10 years now.
Take care...one day at a time.
L
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I haven't posted in a while, just been too down and too tired of it all. Also, missing my mom so much. I just posted an update in the Xeloda thread, as I will be leaving X. There were way too many pages to read to catch up on here, so I skimmed a little, and what caught my attention was Lita. I'm so very sorry for your new brain mets. What a nightmare. Sending prayers your way. Sending healing thoughts and prayers for us all! I Fcking Hate Cancer So much!!
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And then I was bounced from the rheumatologist who said enlarged heart, pulmonary hypertension and needed a cardiologist to do angiography (sp) and cardio said no, none of it and sent me right over next day to pulmonologist and he got some new RX to help w this endless cough and is doing what is needed. So I am going to not die from PH and enlarged heart after all. I was spitting nails awhile yesterday but happy today.
Sister said it is good to have a doctor start w the worst that can happen and not say it is all in your mind. And the rheuma did that, he got me help even tyhough he did not have the knowledge to recognize a false positive on the high def chest CT and ECHO - so I still love him. Resting easier this evening,this weekend. brain / body PET CT Monday.
Turns out they can do both at once scanning - I pushed for it and got it. Only ONCE.
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I will never let them give me two neupogen shots in a row. The pain was unbearable yesterday. I rarely cry but sat on the couch and just had a meltdown. After all the pain it better have worked. My white count on Wednesday was only .08.
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