INSOMNIACS place to talk in the wee hours
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Judging by my scale the past 2 days, I'm rapidly becoming a cat. Not looking forward to licking fur tho.
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Wren, that would pose quite an interesting dilemma if you were to become a cat. Would you try to catch yourself or just sit and watch your activities from a distance?
Cami, I am so very sorry for your loss. My thoughts are with you and your family. and please do rant away without apologies.
Sassy, hope results are back soon and are helpful. And even more so that they'll start listening to you and that you'll get the appropriate testing at last.
We have a sunny, mild day here so I'm going to make use of it and get outdoors to my very bedraggled garden.
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Hopeful, I would LOVE to get out in my garden, and I can in about 2 or 3 months...Ha!
I turned our bedroom around today.... moved the bed, and dresser, and it looks a lot bigger! It stays a lot cleaner, and is easier to move things around with the Laminate floors!
And I'm making "Noodleburgers." It's just ground beef, browned, then add a can of chopped tomatoes, 1 can of sauce, and throw in chopped celery and onion, cook it for awhile with a can of water....... then mix it with your favorite cooked pasta.... My Mom used to make this for our family when I was a kid.... and we always loved it.
Kind of looks like this!
Or this one.... I'm using Farfelle tonight....
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To all when I say my first AND only chemo was screwed up. Sheesh every step in the process was screwed up. Below is from the 2D6 thread. describing the first two steps. Below the///////////// describes how the nurses screwed up and why I may have bladder cancer. It was such a cluster*k for the whole admission. I refused the other three adjuvant chemo's. At discharge I asked the MO why everything happened. He shrugged his shoulders. I said is there anyone willing to figure it out. He was silent. I said "then I'm not willing to trde off my organs when obviously somethings wrong with the treatment.
Written on Nov. 16th 2014 on the 2D6 thread.
"Ironically, I have concluded that I am alive today because my genetics weren't known. Based on pathology, I had a very aggressive cancer. I was given the standard dose. It's pathway was through 3A4. For adjuvant therapy, my dose should have been reduced. This is based on my genetics as a intermediate metabolizer through that path. I had what's referred to as a relative overdose. Not enough to kill me, but almost did. Not the exact definition, but close enough. Then a second thing happened. The Hospitalist hung the wrong IV fluids when I went in to the hospital with a WBC of 1.5, Neuts of 0.5, and a temp 104.8. He should have hung Normal Saline 0.9%. Instead he hung 0.45% , also, referred to as half normal saline. That put me into Acute Renal Failure(ACR).
Relative overdose + ACR = Circulating elevated drug level for longer than expected because of no kidney filtration. The ACR was reversed by the proper fluids after the nephrologist evaluated the situation.
Important concept. Actually, if there was a decent science researcher reading this, it could be an avenue of research.
The problem is ACR is not always reversible. Thank God, mine did not become permanent Chronic Renal Failure(CHR), otherwise I'd be on dialysis.
Baker, I believe everyone should have their genetics done, but again the irony of the lack of genetics and the doc screw up, are likely why I'm coming up to my 6th cancerversary in Jan."
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Along with the above screw up, the nurses screwed up by not doing a simple "Intake and Output" referred to as I & O. If that had been done they would have known my output was not balanced to intake. I told them what was going in (100cc/hr) wasn't coming out. The urine was overflow type----spraying all over and running down the sides in trickle flow. They asked if I wanted to be cathed---Yes!. 950cc( normal void stimulus 125cc--Cross your legs @ 250cc). My drugs dulled the need to go. Cath in for the next several days.
What that meant is the Cytoxan and taxotere sat in the bladder for longer then it should have. Cytoxan overexposure can lead to bladder cancer. DUH.
BE your own advocate. Everyone poopooed me about the yearly urine for cytology exam. Except PCP. Now if it ends up a false positive Yay. I still need a urine for cytology for life.
You may want to consider adding it to your list of yearlies based on your chemo's.
Then I got to add Rai-131 to the mix in 2014. Poor bladder didn't have a chance.
2D6 thread, fun for those that want to see where I volunteer
https://community.breastcancer.org/forum/73/topic/798301?page=7#post_4284104
BBL Love you guys --thanks you keep me sane
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Chevy, have you ever moved furniture then sat where it wasn't?Hopeful so happy you have joined us
everyone here keeps me sane and humorous. Not my humor. Chevy & Cami. They are the Rowan&Martin, Martin & Lewis, Dickie &Tom, Abbott &Costello, Laurel & Hardy, Rossannadana& Jane. Cami is grieving right now and hasn't been feeling well for a while. But if you go back to page 180 and just look for those two posts to each other, you will see that if they had paired up early in life, they be right up there with the others.Jazzy, I was so hopeful the thyroid meds would take off the weight. They tried, then I noticed the fight. I have this theory about obesity and cancer. Most studies say obesity leads to cancer. I have two documented cancers where there was a rapid weight gain before each. It was a "what's happening?". My Hypothesis: Does a weight gain precede a cancer". It's not been studied. I'll press my BigWig Thyroid doc at Moffitt next visit. There always looking for something to study. I knew something was happening when there was such a weight fight. That and .10cents won't buy a cuppa coffee. LOL But it'll be fun to offer a challenge for study.
Jwooooooooooooooohoooooooooooo where are you?
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Mags beautiful thought and beautiful owl Thank you HugsPattyP saw you on W&F's for the first time. Should have put that on the pain list treatment. Laugh allot.
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Sas- I have read a lot about weight and cancer, and of course, the belief is that the extra fat results in excess estrogen, which I get. But thin women get cancer too, I have known a few of them that have had bc. And I have read more in the past year about sugar and cancer. I gave up sugar 18 months ago after my A1C hit the borderline number. I know sugar helps nothing.
Although I have struggled with weight most of my life, I did well for a long time, but put on a bunch in my 40s with some stressful things that went on with my family, work, etc. I got diagnosed at age 52. I know many women put on weight in the pre-menopause and menpause years. And we know this is women most of the cancer is diagnosed.
I have been working with a personal trainer for months and got my internal fat way down and now working on the rest. I went for a solid 2 hour work out today.
I hope you get some better knews about the bladder situation. You certainly need a break.
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I just read an article about a trainer who thinks that belly fat is caused by stress. To lose belly fat a person needs to learn to let go of stress by whatever means works for them. Could be meditation or mild yoga or just being in a special spot to decompress. It's certainly an interesting idea. She's totally into the idea of lots of exercise, but it should be balanced with down time.
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Wren- yes, stress produces cortisol which creates the abdominal fat. I would not say I am highly stressed at the moment, but when I have been, the weight does go on fast (I also stress eat which I have learned to stop).
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Ah but the weight gain was rapid and out side of normal diet. It was unusual. It was what the "hell". I have been stable at a weight for x time. Then a rapid weight gain,I'm suggesting for a study: Ask if study people noted a weight gain within a short period of time before diagnosis. What has to be determined is time, weight, dx
What I'm saying is research has said cancer has a risk factor of obesity. What if the body recognizes that there is something wrong and tries to compensate by adding fat. .
Well what if the body in a stressed state --gathers weight.
If that's normal, then how can we apply it to an abnormal state.
SORRY my lovelies -----being weird----------lol like Sheldon.
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Just so went off the deep end LOL..........Chevy I'm sure you will make straight what I should be........................................0 -
I don't think it will ever be figured out. Size 8, sometimes 6, my entire life. Huge exercise nut too. Stage 4, and to advanced to do much about it. Go figure. I don't obsess about trying to find reasons or patterns. Things happen, no one gets to stay here forever.....I still have a ton of fun and will till I can't . I thought the news said, every ten years or so it's different, Lol, but I thought the most recent was.....we have no idea why people get cancer.
Our bodies are so complex and wonderful. My wish, prayer, is for the docs to figure out how to make bc patients pain free.....and functional. So many of the pain meds make people sick or sleepy. I can take any pain meds and idon't get sick or sleepy.. Why am I fortunate that my body can tolerate the drugs and others can't .
On a lighter note...her is the sweater I just finished for my daughter
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Susan can I have some of your drugs?0 -
They messed you up big time Sas. If I ever have to do chemo, I will hopefully remember to request yearly urine cytology tests. I probably wouldn't have long enough for bladder cancer to develop, but who knows what will happen in the next couple of years. And I do expect to have a couple of years, maybe a couple of couple of years. LOL
Let me ask you. Last night I noticed an onion smell on my hands. I had not touched onions. I washed my hands, and the onion smell was still there. So I googled it. There was information about the onion odor being an indication of cancer flare. I have also started to run a bit of a fever, just maybe a couple of times a week, lasting just a day. I read this was a sign of infection and that it could mean the cancer is in my marrow. The thing is, my PET scan came back pretty good. In fact that was confusing in that the area where I have the most pain (right front ribs) has "resolved." Very confusing. Tuesday, I get blood work; and the following week, I see the doc. There's some weird stuff going on though. I'm sure of that. Does anything jump out at you?
My goodness, my cockatiel is tweetling up a storm. Usually, he talks human or barks like a dog. I think maybe he is mimicking the parakeet. LOL. He's all wound up, and it is time to wind down. hehehehehehe I love that little guy.
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Very nice sweater, Susan. What a talent!!!!
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I seriously have to get rid of the butterfly..............I had a bunch of things saved.......forget why they got lost. Think it had to do with a virus. Some help would be nice on how to develop a thingy file. Did it once . Forgot how
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Dunes-------------no clue.........I'll google............ Sorry DBF home and I'm cooking0 -
dunes, my doc pretty much goes how I feel now and looks at the tests. We been together a long time now, and I always know about a few months before it shows on a test . Cancer has to,be a certain size, not sure what that is, been told, forgot...lol, before it shows up. I always joke with him about the blood tests. 3 years ago, over 30ish nodes both sides of body...blood tests were perfect. Nothing showed until we were able to actually feel them. And he also only wants one radiologist to look at my stuff. When he is on vacation he waits till,he comes back to view them. I never thought those were open to interpretation , but I guess they are complicated to read. I have always wanted to meet the radiologist. I kinda think I am in his hands. It's his deduction that has my onc making decisions on what to do next. The more I learn the more I shake my head.
Sas.....I would love to share....I try to,take just one a day...not sure why....I deal with being uncomfy cause I dont want to take to much. Gonna have a talk with onc Wednesday. I need him to say it's ok to,take what I need. Never asked before. Always afraid of addiction....but when you are terminal...why should I care lol
And I have no bad effects. I told him once how good they make me feel and the energy they give me. He said I was just like the football players....the athletes who get addicted cause they love the way it makes them feel. That's me!!!!!!! So that is why I am afraid to take to much. Sometimes I go on strike and take nothing to make sure I have no addiction . That's when my daughter says....really mom.....doing well are we.
I go ,to my internist also to manage stuff. Told her my fear of addiction . You should have seen her face when I told her...one a day.....she had that look...you are worried whyyyyyyyhhh look. Maybe I will,go,out on a limb and take two tomorrow.......
Hope you are doing well SAS. My thoughts and prayers are with you. You are still in my top five, so I get you in before I fall asleep.
Boy I am long winded tonight....sorry folks
Nighty night
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Susan, love the sweater. All knitted, right? How long did it take you? (Susan, don't say sorry, you can rant or sing, or whatever floats your boat.
I just read an article last week about why some get cancer and others don't. Except for the heritdary ones, it was just luck. They really don't know why. Is the incident of cancer, any kind, because there's more people or because our environment is bad more now than in the past? It is nice that they can identify different types and better treatment. It's come along way in the last 15 years.
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Susan3 wish I had your internist! The sweater is lovely so pretty.
You know what will make your insomnia worse? Seeing your Mom after 2 1/2 years and watching a vibrant funny strong woman become an entirely different person, flat affect, withdrawn, not communicative and looking utterly different. That will mess up your day and leave you wondering. Dementia sucks. We did have a nice dinner out and she seemed to enjoy it. The Mother I knew and remembered is gone. sigh...
Anyway, sorry for all your troubles Sass. Hope things are improving for ya'll.
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Susan, The sweater is really lovely. I have never managed to finish one for myself. Actually I did one, but it looked so much better on DS that I gave it to him. I think all his GFs loved it.
As long as you are taking pain meds for pain, I don't think you'll get addicted. Maybe you felt so wonderful because you weren't in pain? When you need to worry is when you're not in pain but want one to feel good.
I don't think we know whether the incidence of cancer has gone up. It used to be so hush hush and people wouldn't admit that it was cancer when someone died. And for good reasons, because so many people thought it was contagious. Now there are lots of people who have been treated and are still around. I don't think all the chemicals in the environment are good for us though.
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Susan, my onc immediately gave my oxycontin and oxycodone. I am to to take 1 oxycontin twice a day, and she was not happy when I reported that I was not always taking both of them. So, I do as she says now. The pain is there and the pill helps. Apparently it is a long-acting drug, which is why it is only taken twice a day. The oxycodone is for breakthrough pain. I wasn't using them, but have gradually worked up to actually using 6 of them a day. Then the new onc gave me lidoderm patches, and since I do have a particularly painful area, I can wear that patch and not have to take the oxycodone. If you can point to a place that hurts, the lidoderm patches are a great idea. They are not a narcotic. You wear it for 12 hours, then remove it. Then wait 12 hours to place a new one.
Now I have to find a psychiatrist who is not going to be such a jerk about xanax. I've been taking them since around 1985. It helps me in so many ways. Now they are all uptight about it. When I first got the cancer, in 2012, I increased my dose for a short time. Then went back to my regular dose. Anyway, this lady I am seeing is really lousy. I'm going to ask the social worker who is part of my "team" to make some recommendations. Hopefully, I will get one that realizes that now is not a particularly good time to take it away from me. This is a major concern for me.
I think I am starting to get sleepy, so I will give it a try. Tomorrow is "Positive Monday" for those who are participating, so I can't do any complaining starting in 3 more minutes. Yep. Better get to sleep.
Love y'all.
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never heard positive Monday...but I'm onboard
Yes the sweater is all knitted. Took a long time cause my hands got neuropathy for about 5 months so I coiuldnt knit. Then when I went back to it, finished it, tried it on her, she need it wider in the front. So,I had to order more yarn, but they discontinued it. Took I while to find on a site...and walaaaah finally done. I crocheted a flower with a button in the center for a front closing. Now she wants me to make a mug cozy!!!!!craziest thing I have ever seen.
My sleeping pill is not working. Pooie,.....wow that was just 3 minutes from Monday. Almost blew it. Ok. No more. All smiles
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Chevy, your "noodleburgers" is what my family calls either "Hot Dish" (mom and daddy's side of the family) or "American Chop Suey" (stepdad's).
All ready for that blizzard to come drop snow on us.
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hi, I am behind as usual just want to say happy Monday, well I ll try to make it a happy one. Lol
Sass your history is very sad, no wonder everything that happened, for me all I know is that my cancer was very aggressive stage 3b and the 6 chemo did not reduce my tumor mo never did an ultrasound to measure between chemos so I had not clue if it was working, by the time my surgery came my tumor was over 10 cm which told me chemo did not stop it from growing.
Anyway Susan I love your knitting work, I havent knitted in a wile I learned to crochet stitches which look like knitting n it's way faster lol I enjoy it a lot. Crocheting and knitting helped me no to turn nuts during my journey.
Want you to see a sweater I made for my niece.
Ll send pictures once I find it. Min time I want to share this beautiful fellow
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180??????????? You say go back to page 180?????????? Do you know where we are NOW? I mean WTH! STFU! and stuff. Maybe later when I'm not so busy here, sittin' and talking to you all.
No Sass, but once I got out of bed, and there was a wall! Ha, ha! I thought I was trapped! I stood there for a moment, trying to collect my senses... and there WERE none!
So now we have to think about our "obesity" and cancer? But even trim athletes get it... I can't think of his name... the bike guy?
MY theory is, when something goes wrong, it is because it just does.
Things happen to us, like falls, or illnesses, or even the growing up things, and even the things we take, COULD have a lasting impression on us for the rest of our lives.
Like when I fell in the ditch on that broken brown Clorox bottle.. Or me and my Brother smoking that long brown dried up weed we yanked up in that field.. Or EVEN when they threw me, I mean dropped me on my head when I was taking acrobats.
See those things could have traumatized "things" in side, and at the right time, they decided to become apparent, and raise all kinds of havoc & cause PROBLEMS.
So what was it you were saying? Guess we got THAT all straightened out.
Susan! Holy Cow young lady! That is BEAUTIFUL! I don't know how you guys do it... I mean knit and crochet things that LOOK like something! I am really good at scarves, pot holders, etc. Things that don't take counting and thinking!
No Sass...... no more drugs for you.... That's IT! Pretty soon you are going to be limited... like they do in "those" places. Theresa and Eddy do NOT get any drugs in their rooms! Hah! I mean not even ASPIRIN! Their drugs are doled out at breakfast, lunch and dinner!
Can't even enjoy a joint for God's sakes! Those care-takers are worse than the Mafia... I mean what fun can they HAVE!
DUNES! No more smoking weed! Onions you say? I remember one time I was taking Tetracycline for something, and the whole world smelled and tasted like garlic!
Wouldn't it be funny, if there WERE something going on with you, and it was the onion smell that brought it to your attention? You must be eating or drinking something with the characteristics of onion. That's all I can figure out..
We need Cammi for this one... Like she would know....
Geez, I miss her... wish we could help....
Oh, so SASS! You can't DO anything when DBBBFFFFFFFis home? Hah! You can't cook and talk at the same time? Or anything?
NOOOOOOOOO Susan, don't go sharing nothing with her! See, that is the problem!
You gals are just too sweet and caring, and treat us all like we know what we are doing... but we don't....!
Yes Smarty... You and me are smart! It is, what it is.
Oh man Rosie... I'm sorry... I know... It's just that you haven't been around her to see this coming on slowly.
It really hurts... I was with my Grandma, when this was happening to her. And all you can do is be there... It's like you are on this train-ride with her, and you just have to hang on, and go along with it...
Because there is nothing you can do, except be there for her.. and go along with what she says and does..
Is someone with her? I mean she isn't alone is she? Some of her days will be better, but some are just "empty".....
I hope you get your pain meds straightened out Dunes... It's like we KNOW what works for us, just finding someone to help us out, is the problem!
Morning Wren and Mom2! Yes, the Noodleburgers were good...Ha! Stay warm! I hear about that Blizzard headed your way!
xoxoxoxo
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https://community.breastcancer.org/forum/102/topic...
Oh Morning Enerva!
Sass, this is page 181.. Do you KNOW how long it took me to FIND it? I mean you have to start out at page 3!!!! Page THREE, and then go by 2's all the way up to whatever page you want... My coffee got cold.. My finger was sore...
That WAS funny about Cammi's boat... And sticking that garden hose down her throat... Ha!
I can't believe Cammi had a boat...
This was her boat.
She named it "UpACreek"
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Oooooh. The snow is falling in Reisterstown, MD. It's pretty fine stuff, and that's the stuff that can do the real dumping. Mom is worried as she is 24 hours away from boarding her plane to Florida. I just printed her boarding pass. PARTY!!!!!!
My uncle, in Orlando, says it's only - ONLY - going to be 64. Gee, that's too bad.
Chevy, you are wonderful nut!
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Dunes.... I know! Those people in Florida think it's cold when it's 60!
Spookie even has to put on socks, with her long underwear and fleece robe! Sass just goes and heats up her wine and goes to bed. I don't think they even go out-doors if it is below 60.
Is your Mom with you in MD? I would hate to take off in the snow.... Have her pack a light sweater...
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