INSOMNIACS place to talk in the wee hours
Comments
-
Nah, you're one of us! I'm glad you suggested that. I'm usually using my iPad and my fat, little fingers kept removing my threads.
0 -
Wonder how long it will take my poor addled brain and finger to quit going to the left of the page ?
0 -
Hi, Owlies, Popping in .......not reading yet. Note from Patty, I always get these things posted fast, even if I can't stop and read...................Went to cousins then thrifted. BBL
hi sas. Thanks for updating all for me. How very sweet of you. I am still have allot of very strong pain in my back . so very tired it's hard to sit up long or even reading is too exhausting right now. Off my Ibrance a week early so waiting on counts to come up to feel more human again. Hugs to all.
0 -
0 -
I spent the morning with my friend/neighbor. Husband (finally) signed the paperwork for hospice yesterday. Today the nurse come out to do assessments, and the aide asked me to tell her "the lay of the land." The hospital bed and equipment arrived as I was leaving.
I am wiped out.
0 -
Still not reading.........identifying finds.
Very nice saucepan 5$, found a price on the individual pan for 35$ Cool. Love solid saucepans. Sits flat. Either not used much, or carefully taken care of. My Dad owned a restaurant. He said you could tell allot about a cook by the way they cared for there pots and pans . Cookworks TM brand., apparently, very highly rated.Never heard of them, but happy.
Like I really need another dinner service. I got 52 pieces of cobalt glass for 15$. Complete service for 6 and then extra pieces. Already had a mix matched bunch, picked one or few at a time. Cobalt always demands the highest prices. I recently walked away from 5 glasses at 1.50$ They wouldn't barter. Found the pattern tonight. R.c had them listed for 20$ a piece, but that's okay. Cobalt needs white --linens and surroundings to do it justice. Regretfully, my surroundings aren't white. Must now get some white linens. Many wonderful patterns in cobalt. The ones I thrifted are a rich deep cobalt. But plain like the pic. Put on my black counter top you can't see that they are there.
Found these to go with Dear cousins thrifted Federal Homestead plates. 59 cents( R.c 5$ea.). Lots of snack plates coming on the market, but not easy on the thrift segment to get the cups and plates together. Ebay and R.c have lots of matched sets
Found this while looking for something else. Jeanette glass, National clear. Maybe a 1$,R.c says 16$ Matching with a egg plate by Indiana glass (range 30-40$) hobnail. Then the little footed hobnail that I haven't identified yet. It becomes a set. Just this last week found out Jamie(Soon to be DIL, loves to do deviled eggs) The three pieces will go to her at Christmas.
Yay, what fun........ the thrill of the chase. Sorry for those that it bores.
0 -
Just checking I....cross posting here.. Had two appointments today and pretty sure I'll be making a final treatment decision on Thursday when I meet BS again. Some basics from today. I know I'm going to have to be making some very real decisions here coming up. Here's the basic's from today.
Met with radiology and genetics today.
First appointment was ok. Kind of got mixed messages. I really liked the resident physician I met with. We went over the concerns of radiation and the complications that can arise with NF. There is a possibility of the neurofibroma's turning cancerous with radiation. When I posed the question of "what would you recommend" knowing my concerns of the radiation and then the fact that repeat mammograms would have to be done every 6months to a year. He replied with if I was not attached to my breast and was comfortable with the mastectomy, he'd would recommend that.
When the attending doc came in for the end of the appointment and for the breast exam, he said that he would be comfortable with giving radiation and there's only a slight % of the chance of the neurofibroma's turning cancerous. He did ask/elude to a bilateral mastectomy if I was uncomfortable with the idea of having to do the mammograms so often.
Still have mixed feelings on this. Right now I'm more concerned with the effected breast, but it has been in the back of my mind "what if" with the other. Something I will have to discuss with BS on Thursday when we meet again.
Genectics was fairly basic. I had actually met with her 6 years ago, and she still had my family history ect. Added a few things and talked about genetic testing. Decided to go with a 33 gene test that will hopefully be covered by insurance. Blood was given today. If insurance does not cover I can pay 1500 out of pocket and they will continue with all tests, otherwise I'll only owe $100 out of pocket.
I'll be interested on any final input from my surgeon. If anyone has any added thoughts, please share.
Brandi
0 -
if you have a gut feeling I would go with that. Such hard decisions. I was IDC grade 3 15 years ago. I did
Bi-lateral, and chemo. No rads. Came back 7 years later. Should I have done rads even with both removed?
Who knows....wish the decisions were clearer. But we just gotta do the best we can and truck along. I wish you peace and perfect healing....and comfort with whatever you decide to do. Good luck with BS
0 -
Sensitive- for me, writing down the pros and cons of each option helped me to see more clearly what I needed to do. I am an analytical person by nature so I needed that kind of info to make my decisions. The gut feeling is a good one too, as it never fails. I had no gut feeling with mine, so that is why I did what I did. These decisions are never easy and we are asked to make them quickly.
I had a lot of genetics tests myself due to bilateral dx. Many panels and nothing positive to date. Those tests are hard to get paid for and I had to appeal every time. Be ready for that. Genetics tests will give you more info to help you know what to do. When will those be back?
0 -
Genetics will take at least 4-6 weeks. Yes, need to write out pros and cons (since I can't remember a thought from 5 minutes ago at times). More questions for BS before making final decision.
0 -
Sensitive- I had the BRACA during treatment and those were negative. The other genetics panels I have had through the years as those have become available. My BS is convinced mine in genetic, as most bilateral are, but not a strong history of BC in our family. So far I continue to be a huge mystery to my medical team.
I would also ask if they might do the oncotype test with your surgery if you are early stage? This is another genetics test they do that will help to know if you may benefit from chemo. Many surgeons are doing that now for early stage bc patients. There is a score for this and it will tell you if you might benefit or not. There was a grey area call the intermediate range and a trial gong on when I did my treatment in 2012-2013 but not sure if the results are published yet? My docs felt I would be over treating with chemo, so I had surgery and rads only. It is called the TailorX trial. That can at least help with chemo decisions, if you are still node negative. The surgery will tell you that. Those tests come faster than the gene panels. Also hard to get paid!
This is a very overwhelming time friend, so please let us know how else we can help? We will have lots of advice for thing to prepare for at home when you come home from surgery, things you may not be able to do for awhile you will need others to help with, or find help for, etc. We can help you to prepare for what you will go through based on our own experiences. We have all "been there done that" and some still doing it here on a regular basis. Here to help however we can.
0 -
Sensi, Your docs are hedging b/c they don't want you coming back and saying "you said..." Plus, they are likely truly unfamiliar with NF.
When someone asks my opinion mostly, I don't hedge it. In your case won't hedge it. You've said you already have a propensity for cancer based on radiation b/c of the NF. Don't do radiation. Radiation without predisposing factors creates problems, and can create long term cancer problems. i.e. Mantle radiation of the chest for lymphoma creating long term BC problems 10- 30 years down the road. Many scenarios with radiation. Hey, I had Thyroid cancer dx'd in 2014, but likely there for many years. Likely there when dx'd with BC in 2009(08). Likely caused by many years exposed to radiation when there was no push for nurses to where thyroid shields. But who knows, could have been genetics. Dunno.
This is the hardest time, treatment decisions. In the background is the "What if". We can be buried by the 'what if.' It can paralyze our decision making process. You are in the fact gathering situation with time limits. That sucks. But seek the highest knowing/knowledgeable person you can. Had I done that with the thyroid cancer, I likely wouldn't have received RAI131. I did do it with the brain tumor and I had a great outcome.
I'm sure you have followed your disease. I'm sure you know of who is the best in the field(or several). Call them. Ask if they will do a phone consultation, ask if they're is a cost. Ask them the very same question you have asked here.
Your disease/condition is almost in the orphan disease/condition category. Call NORD and see if they can refer you to someone that can give advice at no charge. Orphan diseases/conditions have many folks that understand you are in unusual circumstances b/c of your condition, and will advise without charge. Hugs.
0 -
Ladies,
If you go to this link and watch the 2 min. video Purina Dog Chow & SoulPancake will donate 1 pound of food to an animal shelter. This give away is only available until April 23, 2016.
0 -
Thanks Jazzy and Sas,
I've already decided against the radiation and will be going with at least the uni-mastectomy. Going to make a list of pro's and con's regarding bilateral. Reading and rereading your input, and making lists and questions. Mind is boggled right now.
0 -
Junie, if you get a link to the new kennel that would be fun. The last link I looked at all the different breeds they did. The owners email brought up a different kennel. The did doodles and cairns doodles and standard breads. A bunch. At first it was kind of overwhelming how many. I was worried, but I figured you had enough word of mouth that it wasn't a puppy mill.
Loverly, me too, One 3 cc injection, something so small possibly is so huge. . Did you notice that Dr S said a brilliant young doctoral candidate chose to do the study for his thesis. That is Dr.Patrice Forget. If this works out long term, he may get a Nobel. Wouldn't that be cool. We knew him when
. I sent him a note with blessings and prayer rememberances after the Belgium massacre. If you feel comfortable PM'g him, he likely would be appreciative. Haven't heard from him this last week. Odd b/c he responds pretty quickly. I could tell he was hurting with the first PM. Pray for him.I'm intrigued by the list on salt cravings on Healthline. 17 diseases outside of dehydration and electrolyte imbalance. Going to list them on P&OT's to study at leisure. Well, maybe not. Wouldn't let me C&P. ????????? The site locked up. Guess I'll try latter.
The window's in a loop have to do cntrl+alt+delete to free it up BBL
0 -
Sas - did you go to chkennels.com? Her name is Cindy Hancock and I did check her out and she breeds Labradoodles & Cairns. However, I just recently realized that she does cross breed the Poodles and Cairns. I seriously don't agree with that. A Cairndoodle is just wrong. Just my opinion. The new breeder also breeds 2 different types. Jack Russells and Cairns. Now that you mention it I am going to email her to make sure she doesn't cross breed. Maintaining purity of the breed is important to me. Also, I did receive my deposit back from the first breeder.
Also, really like your pics of your glassware. Beautiful! By the way how are you feeling?
Shepkitty - Yes, it is a hip replacement that I need to have a revision done on. The Orthopedic Oncologist said that he sees my type of situation about once every two years, and I guess I'm that special one. YEAH! NOT!!!!! But if it will improve my functionality I'm willing to go through it again. Life is too short to spend it being limited by pain that could be alleviated.
So glad Marti had a good check-up. What type of restaurant where you in that you got to take her with you? or is Marti your service dog?
Sensitiveheart - So sorry you're having to make all these decisions at such a young age. I remember when I was first dx'd at 31 with BC. I didn't have a clue. The surgeon never even referred me to an oncologist. It wasn't until 6 mos. later at a BC support meeting that some of the other ladies told me I should get a consult with an oncologist. But by the time I went to that appt., the MO said that I should have had chemo, but at that point he would take a wait and see approach. See, like said I didn't have a clue. Have learned a bunch since then, but also realize how much more there is to learn.
Sas & Jazzy have given you some great help.
Well tomorrow I get to go for my monthly massage. I only have a 30 min massage, and have her work on my back & ribs to help relieve pain there. It always stirs up my fibromyalgia for the first day, but I feel much better after that. Then starting Friday I'll be on my week off of the Ibrance and I'll have a day or two of total fatigue.
0 -
ShepK, stem cells for animals? How does this compare to humans? Chit...........Was it a bone marrow retrieval for the stem cells? Where from?
Junie Why is your PCP 50 miles away? Mine is to be blessed for. The practice has two offices within about 15 miles. 8am-9pm to see docs. Docs do appointments and walkins 6 days a week. The north office is open Sunday's with abit reduced hours. I never have to worry about not being seen. It's very cool. BUT the big two county conglomerate just bought them. So, things may change.
What a blessing that you have gotten word about the hip and your poochie. All in good time. Sheesh, sorry for your pain. If you are walking with a walker tells me reams. UGH.
Still interested in your thyroid numbers. Learned more then I ever wanted to know about the thyroid when I got dx'd with thyroid cancer. I even bugged the Nuclear Regulatory Commission b/c the world wide protocol for RAI 131 had gaping holes in management. It was a fun experience. But guessing it put me on a watch list.
Mominator, yeah that video is pretty amazing. I did a thread last summer on Toradol/ketorolac. It was an intense experience. Then I contacted Dr. Retsky who was the lead researcher on one paper. He put me in contact with Dr.Forget. Then I got to meet Dr.Retsky(Michael & Myrna) in January. It was great fun. I gave Myrna some glass. Cambridge glass to go to Cambridge(Harvard). Except they live in Conn. Hope I remember to take that off the postings about Jennifer. I have a hearing loss, You're right Dr.S. does speak softly. I had to watch the video twice.
Mominator, straighten me out, was it your neighbor or you that entered hospice????
BTW welcome here. Don't worry about catching up. Some threads, folks read from the beginning to catch up. If you did that here, you maybe never be seen again LOL.
Kathy, the --'report post' moved to the right. What else changed? Hmm just read Mominators response. I guess it will work out. How's the wedding plans going?????
ShepK, hmmm when you get the research done please share............Marti sounds so sweet. What's your 'constant pain and fatigue ' from?
0 -
Sas - My PCP is so far away because 1. I prefer female doctors (they aren't usually so judgemental or condescending, although I have met a few who are.) 2. Any of the local PCP doctors who are accepting patients, don't accept Medicare assignment. I pay $400.00 a month for medical/prescription insurance, plus drug co-pays and cannot afford to pay the difference between what Medicare pays and what the doctors charge.
Salem has a population of 250,000 and Portland approx. 2,000,000, so more doctors want to be in the larger metropolitan area rather than the smaller communities.
0 -
Sensi, you haven't mentioned if you're are going to reconstruct. If so, go here,
https://community.breastcancer.org/forum/44/topics...
Read the header than give Deborah your info.
Here's a link to tips and tricks
https://community.breastcancer.org/forum/44/topics...
Little things we have all helped with and makes life a little easier
By the way, if you don't sew, I do. I'd be happy to make you a couple of pillows. I still use one of mine in the car for long trips. Sometimes the seat belts bothers my chest.
0 -
Ladies! Been lurking but not posting.
~ ~ ~ ~ ~
Ms. Sassypants - I know you PM'd me, but my fried brain cannot figure out exactly how to help you, so if I just say "Go ahead and use anything I post here, in threads where you think they might have some value..." would that cover it? I am also open to receiving PMs from anyone wanting more info about dealing with hearing and balance issues, or adapting to Traumatic Brain Injuries.
~ ~ ~ ~ ~
Saw my MO yesterday, for what I THOUGHT would be my last visit... my dx was in Sept 2011, and BMX in Dec 2011, so there I was thinking that this was my five year anniversary year. Happily, for appointment purposes, she uses the date by which I stopped my AI treatment, so I can still see her next year.
Nothing out of the ordinary on the exam, but she did refer me back to the original PS for some possible revisiony stuff on my implants. (And if I don't get good answers from him, she will refer me out for a second opinion.)
Hope all are doing well.... nighty night from California!
0 -
Ms. Smarty
Mominator, I am everywhere? Are you sure it's not my evil twin? Wow, you have the power to influence the Mods to make some changes to the template? Thank you! I usually use my phone to post and a few times accidentally removed " my favorite topics" from my menu list. Also, quite a few times I hit the "report this post"
Bless your heart for caring for your neighbor/friend. I feel sad for her young children and DH.JunieB, yay to ortho doc agreeing to do surgery on your hip. You don't need to lose weight before sx anymore? Yes, it is a blessing not to get a pup this June. His timing is always good. Has the pain in your ear and throat resolved? Fingers cross for favorable CT result. The IBS is a day to day thing. Started not very long in 2007 after we came back from Nepal mission trip. Stomach has not been the same since. Seems like recently I acquire occasional nausea. Could be worse. Makes me grateful for the good days.
ShepK, the pup in the loo looks like a husky. Isn't he cute? I think I would be horrified if Mitzy tried that. She has this weird habit of rubbing her face and body on stinky things on the grass, so I ban her from walking or running on grass. How old is Marti? How can you tell if a dog has dementia? I heard that coconut oil helps. Wish Mitzy is a social butterfly. She doesn't trust people. She barks at some of my neighbors. I'm thinking out of fear. I always have to apologize to them. I don't like it when she barks at the little ones because she scares them. I have tried telling her no barking and at the same time hold her snout. Do you have any other suggestions??
0 -
Loverly - Thanks for the good thought for CT results. Don't see MO until the 28th, but will call for results by thursday if they don't call me first.
No, I don't have to lose weight before surgery, but I will do my best to be very careful about the carbs I eat in hopes of shedding a little bit of weight.
Yes, the pain in my ear has resolved. I don't understand how one minute I am fine, then the next a sore throat & ear that lasted two days then gone. REALLY! Good Grief!
Sleep well, catch you tomorrow.
Off to bed now. 
0 -
Mominator, Brilliant of you to suggest the new tab layout. I'm one who will accidently hit the wrong thing when the tabs are too close together. I am so sorry for your friend/neighbor. Her husband seems like he is kinda lost and overwhelmed. It is wonderful he finally took your advice and your friend will be getting the care she needs. You are a very special person to do all you have done
Sensi, It's so important to have doctors you are able to really talk to ~ it sounds like you have a good team. Keep asking them questions and researching on your own until you feel comfortable making your decisions. The ladies here know sooo much and will give you great advice. Between your medical team and the BCO team, you're in good hands
0 -
Ms. Sas, lovely finds! I especially like the cup and the cobalt plate. I was thinking....it's too late for us, but not for the newbies. What do you think about directing the people who will have surgery to the video of Dr. S and the toradol thread? Not sure if we still have the monthly thread on surgery. Not a violation of BCO rules, I hope.
Oh, hi Blessing! Just saw your post.
Sensi, I don't have anything to add to what have been said. Just wish you peace with which ever path you choose.
0 -
Hi ShepK, I was editing my above post to address you. I edit often to add to prevent loosing my long post. I guess we were typing at the same time.
0 -
Hey Loverly!
I saw your posts after I hit "send" how funny! Dogs do love stinky things. Must be why the Huskypoo was in the loo!
Marti turned 12 last October. Coconut oil? That might something good to try! Being a Shepherd, Marti has always been a bit goofy. Over the past few months her age has been catching up. She'll sometimes zone out and stare off into space or at the wall. There have been times that she has been laying in the backyard, near the back door, and not notice me calling her to come in. Her hearing is fine; she's just "someplace else". She will always come in for the cat though. The kitty will run out, squeak at her and give little nudges 'til she comes in. (My dog has a service cat!) Marti also started repetitive behavior….some in the morning and really bad at night. She'll pace the downstairs, butting her head under the arm of each person for "force petting" and attention, lay down for a few minutes and then start the routine all over again. She's a really big dog so her head butts are messy if we are trying to eat or drink. If I use my laptop in the dining room she nudges me nonstop. It's cute, annoying and a bit sad all at the same time. She was up pacing all night until we started leaving all the lights on. Pris, the kitty, will stay by Marti's side when she is having her episodes. They truly love one another and Pris helps to soothe her doggy friend. Hopefully once we get Marti on meds, find ways to keep her mind busy and do more physical activity, she'll show some improvement – or at least not get worse.
I wish I could see Mitzy to get a read on her body language and reactions. South Carolina to California is a long ride though :-) My first guess would be a confidence issue. Dogs who are unsure of how to behave towards new people, other animals and new situations will "act out" by making lots of noise and alternating between looking happy and looking mean. She could be excited or scared. She's bonded so nicely with you, I would hope that she would start taking her cues from you as to how she should behave. Maybe try ignoring her barking and keep up a happy conversation in your best kindergarten voice while continuing your walk. Toys are a great distraction too. My fave dog book is The Other End of the Leash: Why We Do What We Do Around Dogs by Patricia McConnell. It's like a human to dog translation manual and an interesting read.
JunieB - hip pain is awful. You must be so looking forward to getting the new one! And to have something that can be "fixed", yay! There are so many here that have Fibro - me too. Cancer and Fibromyalgia are both considered autoimmune diseases.........makes one wonder? Where I live is very dog friendly with many stores that allow well behaved owners and their dogs inside. Any restaurant that has outdoor seating allows dogs. One of the steakhouses has an area that allows dogs year round and even brings out fancy water dishes for your pup!
Sas - love the glass! Visiting with family and thrifting too? Sounds like a perfect day
Marti's stem cells were created using fat that was removed from her side. There is a company in California that makes the stem cells and then express ships them to your vet for the procedure. Pretty amazing stuff http://www.vet-stem.com/ Animal medicine is waay more advanced than people medicine. I'll post more on my doggie dementia treatment program as I figure it out. My fatigue is a mix of cancer, fibromyalgia and letrozole. Pain is from all the bone mets, with my spine and hips being the worst. I dread laying down to bed knowing I'll be waking up all night from pain, numbness, hot flashes.....oh, well. Suppose I should tuck myself in before my grumpy husband gets up!Sleep well y'all!
0 -
for newbies. We occasionally post these. Relief from the hohums!
😵
0 -
For those facing surgery and torn between reconstructing or not, check out "I look for other flat chested women: A rant". There are uni and bilateral ladies on that thread, some of whom "deconstructed". It will give you the perspective of those of us who chose that route. Highly informative, Nona-judgemental. It has been quite, but if you have questions, someone will pop in
0 -
Sassy: it's my neighbor that is now on hospice. I spent this morning with her as well. When she woke up from a nap she asked "Who's there." I said "Madelyn, from across the street." While I was giving her a drink, she repeated "Madelyn, from across the street" a few times and stroked my hand. It was the most lucid I had heard in speak in several days. It was a gift to hear her say my name.
Loveroflife: I've seen you on Rosevalley and other threads on Stage IV, and maybe (?) on some of the games. I love your photos. I wouldn't call it power to change the template, I just made a few suggestions.
JazzyJuneBug: best wishes on the new hip.
Beatmon: I hope you adjust to the new placement of the buttons
Sensitivehrt/Brandi: wishing you wisdom and peace as you make your decision about radiation or mastectomy.
0 -
Smaarty - oooh.... I remember having pretty things like that.......... I much prefer your "good morning" to my "good night"
0
