Im bitchy, I moan, I groan.....anyway.
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So it's FIBROSIS in your lungs and not pneumonia? Is that a better result or worse? I'm so sorry the radiation did this to you. HOW COULD IT? I mean, when I did rads, the machine delivered from the right then the left, never straight down, so unless the radiation spreads out once its inside the body, How can our lungs and/or thyroid be affected by it?
I understand the necrotic cyst. in the scar tissue. But deep inside your chest? That's just wrong.
CANCER SUCKS. I'm beginning to believe that radiation sucks more.
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Good question, Con. If it were just pneumonia, we could kill it with antibiotics & it would go away. Fibrosis is another word for scar tissue. I have fibrosis in my chest muscles & my armpit, too, for which I've had to get PT to stretch out the cording & tightness. There are a few reason why rads could get into my lungs. First of all, they usually do, at least a little. They just don't tell you about this beforehand (I've read the research). Also, our ribcages are curved and convex (they stick up a little when we're lying down), so even if they aim radiation from the sides & edges of the breast area, they're sending a straight beam through a curved, convex surface, so it's going to travel just under that curve, if you can picture that. Plus, my surgeon took out half of my breast right down to the chest wall, she told me. I got two tattoos for rads, one in the middle of my breastbone & one under my armpit, and radiation was aimed between the two, so a hunk of lung was in between, just under the margins of surgery. Does that make sense? It's not even that the fibrosis is that deep in my lung, just along the edges & under the surface, which is enough to be troublesome.
I'll tell you what really sucks is the lack of informed consent. I don't mind side effects if someone warns me about them & their possible implications beforehand. What I mean is not being told, so that I was never given a chance to make a truly informed decision. That's just unethical.
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Kathi, that makes way too much sense, unfortunately. THAT SUCKS, SUPER SUCKAGE. So, basically, there's dead tissue on the inside surface of one lung because the rads killed it. In the same way I have necrotic scar tissue. Your's is in the lung, so it's growing? and causing restriction in the lung function? and pain? Seems like it would appear on the outside surface of the lung. Your dx was deep inside? Is that why they took so much? MAN-0-MAN that sux.
((((Hugs))))) for YOU!
I did not handle well the removal of any of my breast tissue. I was freaked out for months that they cut me around the areola. Tender and sensitive ever since. I would have been a total basket case if they cut off half. I was a DD cup, so there's plenty to work with, but now that side is about a small C while the other is still DD. I don't like the way it looks, so I tend to avoid looking. Now that there's apparent infection in there I'm looking constantly to check it's condition.
Two years ago, after the lumpectomy and rads were over, I had an emergency Appendectomy for Christmas. The year before that, my son had one and the year before THAT my daughter had one.. on Christmas Eve at midnight, by Dr. Lord. Funny! how weird.
MERRY HOLIDAYS EVERYONE
~Connie
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hmmmm
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Well, the good news is, once you've had an appendectomy, you generally won't need another one!
otter
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Hi kids, thanks for the well wishes. Connie, Sessna, KAK...I'm sorry you're in the suck pit with me
Unfortunately it's not pneumonia (the irony of saying that!) what I do know so far is that it's my heart. Specifically the right ventricle. We are in the process of getting it help with meds, the steroids they put me on stopped the cough, and I am breathing easier with that and the inhaler. Now, tests to say exactly what is causing it. The suspect is AC, but until that is the final answer I hesitated to put that so as not to alarm anyone who may read the post. I was in the same boat with KAK when that even came up because to the best of my knowledge, I was never told that AC could come back to cause heart failure years after it's been given. I'm a little miffed about that tid bit of information I only got when there was a problem. None the less, if that's what it is there is nothing to be done about it now. Hopefully the answer will be coming with the tests done yesterday.
I hope everyone is well, and enjoys the holiday. I'll be checking in as my strength allows. ((((HUGS))))
Bonnie
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Dear Bonnie, what a shame. Prayers go up for a speedy diagnosis and a plan to treat and avoid any more damage. Kathi, you have been thru too much. Another thing to add to my long list of reasons I did not and will not do radiation.
THAT (just F@*#ing) SUCKS. Hugs, Nancy
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Hey Ladies, I thought I wrote for the last time before Christmas, but I saw by BS again today. That necrotic cyst spot is still quite pink. She said this time that she does not think it's infected, so no more antibiotics for now, but she also said that whenever you see pink on the breast it could be Inflammatory BC !!! She did a punch biopsy today. Hurt like a bitch and she put a stitch in it. I couldn't watch, made me feel a bit sea sick.
Bonnie and Connie are in the waiting room again. And Kathi has definitely been thru enough. Anybody had a punch biopsy? She likened it to a tiny cookie cutter. (how sweet -- Snarl!)
I take a lot of supplements to keep my energy running. What little I have is boosted by a B-Complex, extra C, Iron, Folic Acid, Fish oil. And I still run out before I want to.
Thanks Nancy, it does SUCK. I'm not telling anyone (but dh) about it being a biopsy, not until after the 25th. Then we'll just get drunk, oh, you don't drink. Hey, it's never too late to start. Guess we'll be waiting until Monday for any results. I'm not chewing my nails over this cause I don't think it's the big C again. But I've been known to be wrong once in a while. But ONLY once!!
Funny how ones sense of humor can kick in when we are facing the unknown. I'm excited because dh got me a netbook for christmas and I can't wait to turn it on. No, I haven't unwrapped it yet, hopefully that will be tomorrow night when our kids come to celebrate. And because my mother and dh's mother are still around, we are, after 35 years, STILL expected to visit their homes on Christmas Day. One at 3 the other at 6. it's been like this ever since we married. ONE day I get to stay home and have everyone come to see ME! After all, I am a grandmother now.
My brother used to say Happy Christmas Eve Eve on the 23rd, when we were kids. Now we all say it and mostly the holiday happenings begin on the 23rd. So A Happy Eve Eve to all. and to all a good night!
~Connie
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Time for another rant and since my family are avoiding me because they know I need to complain I came to the place where it's ok to have had breast cancer and it is okay not to be happy & cheerful all the time.
So heres the thing, when I was told I had breast cancer all these people in their wisdom told me that I would be better by Christmas. It is now Christmas eve and believe me I am not better. I am continually tired, a little over being lopsided & the numbness and feeling of my scar .I just long for the old me!
I have opted out of the traditional christmas day with the extended family and am going for a smaller one at home with my dh and kids. This has upset my mother no end who is currently just talking to me. It wasn't even at her house. She lives in the same suburb as me and managed to say that she may pop in on the way home, if there is time. My sister has been missing in action since my dx (also lives in same suburb) but still has time to spend most of her time with my mother. Not that I would be missed christmas day as the time is spend with us listening to my mother talk about her favourite things...herself and my sister!!
I know that this is just one of the hurdles I need to get over (the 1st christmas after cancer) and I know it will get better but boy does it hurt today.
Love to all
Viv
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{{{{{{{{{{{{ VIV }}}}}}}}}}}}}}}}}}
I should call you 9. Like the Roman numerals....or B9....or cloud nine. I dunno, it's early here and I feel your pain and lived it for over 50 years. I learned to keep myself away from people who could hurt me anew, but that didn't help the old pain. They hate when we're not there because then WE are "in control." Who would they put down to make themselves feel better if we aren't there to hear it?
Gentle hugs my friend...
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Barbe,
You are always there for me. Thank you for once again 'talking me down from the ledge'.
It is late here nearly 11pm so tomorrow is Christmas Day.
I hope that I wake in a better frame of mind and feel happier. My family want the old Viv and Mum back and so do I. They deserve so much better than want I am currently adding to the family.
They are a great family and I have been blessed with them. Think of will take my tablets and settle down in bed.
Have a great Christmas Eve
Viv
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Viv, if they are that great of a family, they will wait for you and be there in their own way when you are ready. You have the RIGHT to have Christmas your way this year! Enjoy with peace and contentment....
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Barbe,
The family I was thinking was my DS and kids.....not the others!
And they will wait for me..I am very lucky
Enjoy your day
Love Viv
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Whew! I got confused there Viv! I thought you turned 180 on me there.
Yes, your immediate family is always near your heart no matter where they are. Having an "at home" Christmas may start a tradition that they appreciate more too! Extended family visits over the holidays are stressful for all....
Merry Christmas,
Love Barbe
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i am so tired and achy, my hands and elbows and shoulders hurt, hips and feet not so good, almost nothing done for the holidays, feel so bad for dh who is doing so much already. all theses things i want to do but really hard if hands and arms are out of commission...even typing is difficult and i probably should not be here..but well idk guess you all understand.
vivy - hope you have a wonderful day - just you and the family -
barbe - hugs
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Sorry but I just need to vent some IOS.
Had pain in neck and back, had bone scan 1 year ago- hot spots were assumed to be arthritis. Pain didn't go away, finally sent for new scan and xrays. they'd missed the trauma fracture in the lumbar part of the spine. All this time has now allowed the spine to get further out of alignement and now it's physical therapy while waiting for a date to do surgery. Geeesh, I dealt with BC, I'm dealing with wicked arthritis and AI side effects and now I have to have rods put in my back? WTF? I'm still in my 40's.what did I do to deserve this. This definitely is IOS. I want to feel healthy just for a few months, no more headaches, no more joint pain and definitely no more back pain.
Ok, ok, I know I'm asking for miracles but just once I'd like one. thanks for listening.
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(((((((((((((((((((((((((((((((((Flash))))))))))))))))))))))))))))))))))),
I wish for Christmas miracle for you.
Hugs
Viv
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Flash! That's terrible! It's not only our breasts that get mangled but our bodies age at warp speed. I'm in my 40s too and I'm all rickety and old. Sucks. Sounds like a big surgery -- let us know when it's scheduled so we can ramp up the vibes and prayers.
Viv -- I hope you survived Christmas and your family!
SUX where appropriate.
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Flash that IS a HUGE SUX!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! We trust our docs to take us seriously! Sheesh!
Gentle hugs to all who need one....
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Merry Christmas everyone. I hope you survived it. We spent last night at my cousin's house - his wife is such a great cook and she didn't disappoint last night. Nothing like spending an evening with extended family to bring back all those old feelings. I did enjoy the kids. The adults I could have done without!
Flash - although I am probably 20 years older than you, you just described my symptoms. You shouldn't be having that crap until you are much older (hugs). I am so sorry that you are going to need spinal surgery. Tht does SUX big time. Some days you just feel like throwing up your hands and shouting "enough already."
Vivvy - that sux too! I have to go to my sister's for Christmas Dinner and I dread it. First, she must be the center of attention at all times. Second, it will not be just family - it will be a couple hundred of her closet friends (okay, I exaggerate). I do know what you mean about no one willing to listen - its like "hey, you had surgery, its done, get over it!"
Barbe - hugs - hope you are feeling okay.
Kathi - major suckage for you - I think sometimes these doctors deal so much with this stuff while we only see it once that they forgot to tell you stuff because it is old hat to them and just assume everybody knows that; or, they think we are hypochondriacs.
Elizabeth - When I turned 50 I remarked to someone "I know its downhill after fifty - but all at once!"
Navygirl - lots and lots of hugs coming your way.
It would nice if all the suggage went away - at least one day.
If I have forgotten someone it was definitely not intentional - just swiss cheese for a brain.
Love, gentle hugs, and big fat "THAT SUCKS"
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flash, not that you wanted it, but you get the prize for SUCKIEST day/week. I cannot tell you how sad this makes me. Too many doctors take us as ditsy, moaning, groaning, whiny females who have nothing better to do than tromp off to doctor's office. Yea, just the way I want to spend my spare time. THAT SUCKS. Gentle Hugs for all, Nancy
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A Song for Flash and Everyone (to the Tune of Deck the Halls)
Deck the halls with suckiness issues, (sucky-sucky-su-u-u-u-ck, suck suck, suck suck)
Log on to bco and pass the tissues (sucky-sucky-su-u-u-u-ck, suck suck, suck suck)
Down we now our drugs and cocoa (Sucky suck, sucky suck, suck suck suck!)
Hoping that we don't go loco (Sucky sucky suck, suck, suck, suck SUCK.)
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Dad is home! He was in the hospital for seven scheduled days in November, and we just had and ER trip for nine days. First, it was diagnosed as a blockage or obstruction. Then, it went to lazy bowel. Then it was determined to be a resolving ileus. A resolving ileus is a possible side affect to any abdominal surgery. There is no "preventative cure." The two doctors were talking surgery on his fourth day in the hospital! I was freaking out (inside) because my mother passed away two days before Christmas in 1988, and I thought Dad looked kind of weak laying in his hospital bead. I prayed very hard. I asked for mercy, kindness, and healing. God answers prayer! No surgery (thank you Drs.), and Dad is feeling weak now (hey, seven days on an IV), but much better.
Me? I have the worst cold that I can remember. Scratchy throat, watery eyes (I suffer from dry eye), powerful sneezes, and runny nose. This is still one of the best Christmases ever! My Dad didn't have to have surgery two months in a row. 2009, three trips to the ER, two being mine.
kmccraw423 - Thank you for your right on advice! You and your sister are RIGHT ON! http://www.springerlink.com/content/x4312xwv0402867m/ I read up on the Internet about intestinal blockage and engaged fantastic prayer warriors. The Drs. took it by the book, as the Internet said that doctors should check for a resolving ileus before doing more surgery. They were talking surgery, though. You're supposed to insert the stomach pump tube, give medicine to get intestine to work, and IV fluids for a few days, don't just rush into surgery.
They had to go full incision last time because they saw the cancer with the laparoscope. The surgeon said that all appendectomies start with laparoscopic instruments, and they only open a person up when they have to. The surgeon said he used to have six feet of intestine, and now he has five.
Pulmonary fibrosis? KAK, this is not supposed be a thread for sad Disney-like rhymes. They are giving our KAK treatment in doses, and then they diagnosed her with pulmonary fibrosis. Sessna1 was given a blood test, they found a schism. Lo and behold, a pulmonary embolism! Radiation or chemo can lead to pneumonitis, your resistance is low, and it is so hard to fight it.
‘I'll tell you what really sucks is the lack of informed consent. I don't mind side effects if someone warns me about them & their possible implications beforehand. What I mean is not being told, so that I was never given a chance to make a truly informed decision. That's just unethical.'
RIGHT ON! There was a possibility of my Dad needing a stoma, and no one told him until I heard the term used on official paperwork, went on the Internet, and then called the surgeon's office threatening to cancel the surgery! You can't wake a person up with a hold in their side and not tell them it might be there beforehand!!
I think doctors hope for the best, and IF and WHEN then have to do something they hadn't planned on, yet it wasn't unforeseen, they figure it is all in the route of saving your life, so you'll accept that they did their best. They don't want you going into surgery worried and scared, because that mindset won't help.
The thing is, if you have a person who is big on "give it to me straight doc, two fingers of whiskey," a person who doesn't like surprises... you will blow their confidence in you.
I'm told that surgeons are usually somewhat frosty and matter of fact. They do their specialty and get out of there. Once I had that fit about the stoma, the nurse and doctor looked at Dad and I like real people and treated us better. We're not stupid, he's not compromised in his comprehension faculties, I love my Dad fiercely, and we really needed his (the surgeon's) help. Freaking out diplomatically can convey that to others... Please use that method if necessary to get your points across. By the by, a doctor needs his morning coffee before he'll be kind to anybody.
My hospital assigned pulmonologist ran tests on me until he determined nothing more could be determined outside of doing surgery. ‘The bottom of your lungs are fuzzy. Maybe you had an ailment before you started chemotherapy.' That's what he said.
HA! The female ER doctor found that pulmonary embolism with a blood test. I should ask for some of his fee back... (sad smile)
navygirl, heart failure? You, lady, are scaring me. Okay, Connie07 does, too. More fear I feel than from the drug Coumadin. There are no mainstream news source covers real cancer. They could be more insistent about exams - and more forthcoming with info... Wait. I hear the doctors chanting, "Every body is different. We don't know about your specific case."
Connie07 - punch biopsy? I don't wanna see that core gun again or note that breast tissue looks just like chicken. I don't wanna see that core gun again. Numbing shot. Riiiiight.
vivvygirl, you left me speechless. They said, ‘You'll be better by Christmas.' I'd be apoplectic. "Who told you that? Have you seen my chart? Did you say that to make me feel better or just to have something to say?" And YES! Christmas at home, Christmas wherever those who love you gather and appreciate each other. Christmas love and compassion.
Flash, ladies, miracles do happen. We have to never stop asking for them or believing in the one who makes them.
For all the ladies of the boards .... (Sung to "We Three Kings of Orient Are")
We've bc, the DX did say,Chemo, rads and suture away.
Traumatized tissue: problem not issue, Just can't take no more today.
Side effects come in from the back, Dissolve bad cells and good ones attack.
I read up on it, then, doggone it, Was clinical trial not proven fact.
Test results wonder, markers mine- How on this case are you inclined?
Monitored, mooring, interns touring,I can hear you, ears aren't blind.
May that giant sucking sound be Santa going up your chimney after leaving many presents.Your Sessna1
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Sessna, is there nothing you can't do? ("I read up on it, then, doggone it. . . " GENIUS. Superior to the original, I do believe!!)
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Oh god, way too much suckage again. This is a quickie...but hug& a large That Sux to Bonnie, Connie, flash & Sessna. Flash, get off the damn AI! With a dx of dcis you are only decreasing your recurrence risk by maybe 8%. Meanwhile it is destroying your spine. Rock & Sessna, I think you have the beginnings of a fabulous Christmas album...
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HEY... IT'S A BIG FAT B9 HIP HIP HOORAY.. IT'S A NEW DAY.
Don't remember where I left off....but I know I told you about the biopsy on wednesday. Nobody should have to wait and wonder on test results over Christmas but I did and I survived to say it's benign and I'm beyond relief.
Thank you all for your thoughts and prayers and concern. I Know it's genuine because I feel the same way about you.
Many happy returns on the upcoming New Year and may all results be B9.
~Connie
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OMG Connie!!!!!!!!!!!!!! You must be on cloud B9!!! You done good!
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YAY! Connie, B9... yippee!!!
Have a very happy New Year, everyone!!
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Wonderful news...great for you....Have a Marguerita on me!!!!!
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That is so great Connie! May this new year treat us all significantly better than the last year!
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