INSOMNIACS place to talk in the wee hours
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Lover - I liked that reading spot on the ship. It looks like a huge floating honeycomb then you get inside and it is like a 5* hotel. Considering a cruise ship or regular ship to go from west coast around WA up to Alaska instead of driving.
Sas - hospice was out of left field for me. But I was very sick for a long time and quite weak. Am getting stronger by not being on Xeloda. I think the liver lesions is mostly why they said hospice. Then the pain hit 9 days ago and I took it seriously. But better now.
Lovely snow here. Danny Boy goes out and POUNCES in it, he loves snow so much.
Hubby got a new charger cord for my ipad, mint green, ick. But it works.
This week a cookie swallow test, a scope to record visually and sound wise the vocal chords and maybe they can see thyroid w it, I don't know. And a CT w contrast of throat, chest, abdomen and pelvis. No doctors this week, just prep tests for next appts. This means 3 trips to Goshen. Thyroid specialist is there. New onc is the other direction.
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Lover, my SIL had gotten sent down to St. Thomas after Hurricane Maria went through.
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I need to get out of bed first. If only everyday is vacation day.... Why did Adam and Eve disobey?
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Loverly - Beautiful pics of your trip and the cruise ship. Thanks for sharing. I hope you were able to rest up a bit to get ready for work on Tuesday.
Bluebird - How many miles is Goshen from your home? Three times in one week can be quite taxing on you. Glad to hear you are feeling stronger now though.
M0mmy - Hope your cold is better.
I am still trying to recoup from the trip back east. I've been anchoring my recliner down for the last three days. Tomorrow I go for bloodwork at MO's, then I hope to be able to get an appt. with chiropractor. I sure miss my Kirby. He is still at the trainer's and she says he's learning a lot. Now she just has to give me my refresher course so I can keep him headed in the right direction. I hope I can take him for his "canine good citizen" certification in the next few months.
Kathindc - I hope your pies and cakes came out like you wanted and everyone enjoyed them greatly.
The "Super Moon" is out tonight and I hope you all get a great view of it.
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Junie, desserts came out 👍 Took my basic cheesecake recipe used lemon extract instead of vanilla, left out the milk, and added limoncello and a tad more cream cheese. Used vanilla wafers instead of graham crackers for the crust. Topped it with a thin coating of lemon curd. Would love to see a picture of Kirby when he gets home.
Shep, Sas, Junie, and Liver sounds like you had a great time together. Nothing like bad directions for a bonding experience. They do have you take a round robin route
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Dear Sas and all! I’m still here reading everyother day or so. Just not much new going on. I did interesting enough have a Herceptin reaction after more than 50 doses! We know it can happen at any time, but it took me a few minutes to realize what was going on and call for my Nurse. I was very involved in a movie and at first thought I was having a touch of asthma! Pretty dense for a retired RN! Lol...duh unfortunately now back on IV Benadryl and steroids for the Herceptin and Perjeta. He hasn’t made me restart the oral steroids Thank God for that.
It has really helped the incessant itching...to pre treat.
I stay in touch with our Phyllis by PM. She is on caring bridge also. Somehow she keeps her wonderful self if humor.
Thanks for checking up on me....I’m her
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Blue, which state are you in? We did the cruise to Alaska many years ago. I was amazed how blue the glaciers were. I still remember the only sound I could hear was of the soft engine of the ship while we were cruising on the fjords. Everyone was quiet as each was inhaling in the pure air and in awe of the majestic beauty of the wonderland. Hope you get to see it. Yeah, work to keep the beast in the cage. May you be granted strength to fight.
Mommy, is your SIL with FEMA? Bless her heart.
Junieb, beautiful picture of the wolf moon. Hope your stomach cooperates soon. Still on jello and broth? I don't need to report to work until Thursday, but have plenty to do at home. Need to declutter
Kath, your cheesecake sounds yummy. Love cheesecake, but it doesn't love me.
Queenie, how do you like your new laptop. Which one did you get?
Hi Eeyore and Beatmon!
About our trip to South Carolina, it was eventful at the beginning, middle, and end. Ha! Like I said, we can plan, but He directs. Wish we had more time with our Dear Shep. My other regrets was I didn't get a chance to drive to west Florida to visit Ms. Spookiesmom.
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WHOA NELLY, Haven't been this cold since ought '92. Three layers of clothes. 56 degrees, going into the 30's We may even have snow. So, sorry to all you folks that have this worse than us.
Loverly, those ships are mammoth. Also, beautiful. The ships that sail out of Cape Canaveral aren't as big. Your state room was beautiful. The food looked good too! The play things are better than CC ships too.
I have dwelled on the cell phones. I think I will get one. I'll start saving. When I have the money saved, I'll ask ya' all what's best.
Do you have that selfie in the hotel room?
Was Mitsy happy to see you? I was very happy that you and Junie got to meet Shatzi & Dini.
Blue, Happy dance that your cough is improved. I was on Lisinopril ace inhibitor for about two weeks. It's known for it's cough. My cough with it, was lean over the sink coughing so hard that I's puke. But it was gone real quick when I got off the drug. Everyone here is not in early treatment, so, I can give my opinion on radiation. It sucks, for all the complications it causes. It's a travesty.
Junie, hope the sickies go away soon. Thanks for the pic of the Wolf moon. We have been overcast, so we couldn't see it.
Kathy, I love how you cook. The dessert sounds scrumptious.
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Beatmom, I kinda thought you were still reading. Glad to see you. Great that you don't have to give up the Herceptin. Phylis went into another trial, but you likely know that. She's looking forward to her trip in April. As many times as we have talked about it, I can't think where she's going. She is funny funny funny.
EEyore, Blessings about continuing to work. Hope your drugs don't lay you low. I let my nursing license lapse in 2012 with the braintumor & crani thingy. The hoops to jump through wouldn't have been worth it. But I do miss it. Sounds like you have nice partners. Without specifying, what field of work?
Queenie, what Lap top did you get? I'm going to work on getting a cell phone. I'll save for it first, then I will ask for your help
Sensi, thanks, it was truly memorable. How's Chance?
I think I will put a 4th layer of clothes
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I'm back at working on the CO2 laser thingy. Hours of work, all dead ends.
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Got word from Dr. Retsky, the grant didn't fly. I told him I was very sorry about that, but I will never forget that he asked me to be involved. That it was "way cool i.e. 60's cool" I know I'm weird
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There is a thread for those who wish to post prayers and loving thoughts for MammaRay who is now no longer posting., Her DH has posted for her
It can be found here
https://community.breastcancer.org/forum/38/topics...
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Junie - lovely supermoon photo. I missed it, was so frigid we had drapes closed, darn. Thanks for the photo.
Goshen is 1 1/2 hrs one way. They have offered us a house that is for guests who travel somewhat to a lot far, but we have Danny Boy and have to go home for him. Though my sister and I have discussed us staying there if the need arises and Hubby stays home with the dog.
Lover - I am in NW Indiana near Lake Michigan. But way in country and no cities near us at all. To get to the cruise ship will be a trek across 2/3 of this country. That would be enough driving. And we would have Danny Boy, so driving is a must. I think some ships have kennels and some 'barges' are an option. If I go it will be to be treated by my primary oncologist who moved there end of May 2017. But my sister and daughter are like, ummm no, please don't. because they blame him for this getting so bad. I don't, I have my own blame in this if there is any blame at all. I own it so that makes it easy to forgive him for mistakes too.
Thank you for think link to MamaRay's thread, FeelingFeline.
Sas - cough still improving, I can go to bed and maybe cough once, used to be endless. Today had a scope of vocal chords. Ah yes, the dreaded scope. They sprayed my throat and I freaked! had that blast of chemicals that take my head off then I could not swallow, but I could breathe so I calmed down. Turned out the spray did no good for me, my GAG REFLEX is absolutely set on no one shoving anything in my mouth. So finally after multiple very loud and gaggy attempts that had both techs and Hubby giggling.... sigh..... I whispered, maybe if I hold the wand. It only had to go to the back of my tongue. And when I did that I was fine. Good pictures and sound recorded. She said she can tell from the way my left vocal chord remains a bit loose that there is probably some nerve damage, the coming CT w contrast will show where it is coming from. Answer is to get rid of cause. Then a botox injection which lasts 3 to 6 mo and repeat. Or an implant. Then it will close properly. Right now air is also escaping so that makes it hard to talk too. And turn head to left when I eat and keep chin down so as not to aggravate and cause cough. But of course, cancer first.
Today I pushed my own wheelchair for awhile.
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Love that one JunieB.
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Thinking of you MammaR
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Mamma Ray, all will be revealed.
Blue all drugs have consequences. All drugs react differently within us.
You---Plese,-try to find out in the xeloda group where you fit on the 180 degree spectrum. I mentioned Lisinopril. Lisinopripl's 180 degree spectrum ranges from zero cough >>>>to mild cough>>>strong cough>>>hang over the sink and puke cough. What is the experience of the Xeloda group?
There is the difference between the reading about a drug and the taking of a drug.
For example, pain med. We --medical and patient- can come to very specifics about what is pain. Even more so if the medical practitioner has experienced pain. Then it's a shared knowledge.
What is important is to share our knowledge about drugs. That's why many of the threads exist on BCO about drugs. The drugs went through clinical trials. Many affects are not noted until after market wide usage.
The Aromatase Inhibitors are a classic example. The musculoskeletal effects were not noted in clinical trials. I viewed a video of one of the lead researchers saying such. His following comment was "We will have to look at this" My reaction was "No, shit Sherlock" I was on about 5 drugs to control the pain and side effects.
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While talking about drugs, I will again make my opinion noted about Tramadol. I consider it a very unsafe drug. My opinion is it should be taken off the market.
Reason is it has a twofold affect, pain receptors and serotonin affect. My concern is the serotonin affect. No other pain reliever affects a synaptic neurotransmitter. Never mess with neurotransmitters unless you intentionally want to do so.
SNRI- selective neurotransmitter reuptake inhibitor
SSRI- Selective serotonin reuptake inhibitor
SSNRI- selective serotonin norepinephephrine inhihibtor
Tramadol messes with serotonin. Messing with serotonin sucks. The cardinal example is ask anyone trying to come off Effexor. Which I also consider one of the worst drugs in the world.
You take a dose of tramadol for pain. An individual dose may mean nothing. But daily doses. Trouble, It has been moved to a higher drug schedule because it has become a drug of abuse. WHAT does that tell you?
Sucky drug.
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Transferring both post to Pain and things
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Things get real quiet when there is a disturbance in the force. It's hard. We don't want disconnection, but also don't want conflict.
But IF we don't maintain what we thought ought to be then it will fade for this time....................
What it will return to is the true days of insomnics. They were sooooooooofunny and necessary. Before page 180.
One of the things that came out of those nights was a recommendation to the mods to develop the Spanish section. That was so cool(60's nerd).
Lurking is wonderful, we observe, evaluate, learn.
Engagement is better. Engaging by posting, or better yet by calling.
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Sas - I have checked and read the Xeloda thread completely. What a hunk of info. I was often at puking and coughing, the phlegm came out like water like I had been drowning. Not always. Most that have or had the cough was coughing and or had excess phlegm for no reason. But I already had the cough for other reasons too.
On a lighter note.... one of my favourite winter stories I wrote long long long ago. We lived at a cottage for awhile, we are now married 38 years. Enjoy if you are awake in the middle of the night.
http://www.womens-fiction.com/humor/i-hope-the-nei...
and these two that I posted sometime back somewhere, probably here....
http://www.womens-fiction.com/short-stories/gracie...
http://www.womens-fiction.com/dense-observations/m...
settling down to a long winter's night.
Sas you reminded me of Fuzzy's Romp Room. And They found the cure for stupid. And You know you're a breast cancer patient when. All threads that have lost their action but the life and party was magnificent too.
edited to add photo
my fantasy cottage
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Blue, when you went back to the xeloda thread, did you know that the drug could cause such coughing? Clarifying you learned of the cough (nightmare ) by going to the xeloda thread? The other coughing was likely the pneumonitis.
The key when something happens is never assume it is one thing. It's like unwrapping a package a layer at time.
NOW the question comes is the pneumonitis resolved? If so would the reintroduction of xeloda be relevant. Sometimes a washout period allows for the reintroduction of a drug. The reason to try the drug after a washout is b/c that drug may be life saving.
A typical washout period is 8 weeks. I did that with Arimidex. In the washout period it's important to NOT change other factors. At the end of 8 weeks, I introduced Femara. Within 3 weeks many of Arimidex's s. e. returned. I was then done with Femara. I introduced Aromasin sometime later, but I forget the time between drugs. Couldn't even surmise. I took Aromasin for maybe a year. Maybe longer. Memories are totally gone.
All of it occurred for me in the time period that we didn't know my CYP450, CYP3A4 was abnormal. It was intermediate.(slower). I should of had a reduced dose.
The silver lining, I had a higher dose for a shorter period. Now they call that Dose Dense. Go figure.
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Blue LOVE the cottage. Life long dream to live in such a cottage. With a completely state of the art inside. i.e kitchen, baths. laundry etc
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Blue ----Essa the stories are great. So, much fun..................
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My apartment is soooo quiet and lonely. Mr. Kirby is still at the trainer's. She is working with him on his distraction matters. She took him to the post office one day on lead and he reacted to a teenager on a skateboard, then when she deliberately took him into her chicken coop on lead once, he tried to chase one of the chickens. Kirby got a scolding for that. The hope is that he will learn to not react to other animals in public places, (i.e., the bus, restaurant, doctors office, etc.) He is nearly 15 mos. old and still a puppy, so with maturity he will get better at it.
However, he is having a great time with his buddy Murphy, a Labradoodle. They became acquainted last spring when Kirby was there. The plan is for Kirby to stay until the end of January. Sigh!!! That feels like forever from my end. The apt. is empty and I don't have to struggle for blanket coverage in bed. Sigh!!!
Sas - Stomach has finally gotten better and I am again eating real food.
Blue - What a pretty little cottage.
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Junie - I would miss Danny Boy so much if gone that long, even an afternoon would do it. Though I understand your goal. Considered training DB for service but never did.
Sas - the Xeloda did not work for me, liver lesions grew in spite of being on it for 8 months. So not going back there. The pneumonitis was from July through mid-November. And couples with me going off Xeloda on Nov 25 or so. You are so right, there are layers and overlaps and no one knows anything for sure when moving too quickly. Fortunately, I do know the cough was caused by factors --- the lymph nodes w cancer all around my bronchioles and partially closing off superior vena cava vein.... the developing asthma from that too ..... the cancer drugs perhaps but definitely from Xeloda since that ws when the phlegm started too..... and the pneumonitis. I tracked down the question - is this from lupus and got a no, it was from the others.
Glad you liked the stories. I need to have fun and write more.
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Sas: you know me...I’m not asking you to be my Dr. Want to pick your brain about pain meds. I’m on a Fentanyl patch. Got to that point partially because oI’m unable to take the OxyContin, hydrocodones etc due to severe itching. Fentanyl does not relieve pain entirely of course. Tried Dilaudid for breakthrough...same thing. I’m talking itching head to toe and everything in between.
Now on Tramadol...maybe 1 every 3-4 days. Worried after I read your post. Do you know of any meds not related to these that ladies have taken successfully to help with break through pain? My oncologist is always open to any suggestions.
What distresses me is that all my pain and physical restrictions are from side effects left over from the Taxotere and the continued use of Herceptin and Perjeta. Unfortunately I’m not one that is able to smoothly take this cocktail. I hate to complain because I’ve had great results with tumor load.
Thanks in advance if you or anyone else has suggestions. Brenda
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