INSOMNIACS place to talk in the wee hours

Smaarty

lover, Wednesday? Where?

Mominator

Loveroflife, girl friend, you are everywhere!!

I will try to hang out with you cool ladies, but you are quite the chatterboxes! I'm not sure if I can keep up with you!

Wren44

Mominator, Don't worry about keeping up. Just jump in. The topics change so fast anyway.

Did they just move the Back to top from the left to the right side? Or have I just not noticed before. I have almost removed my favorite topics several times tonight.

kathindc

They moved it. I noticed it a few hours ago. Someone asked the moderators if they could have the tech team do that and jump to the bottom because they were so close to remove from my favorites. They also asked for report this post to be moved.

JunieB

Loverly - No you won't! But that's ok, because you're a lot of fun when you misbehave. Please give Miss Mitzi a belly rub for me. Where in the world did you find that hilarious pic of the doggie in the toilet? I had my 6 mos. CT today, now waiting for results. Also, ortho agreed to redo my right hip in June, so once I get that done, maybe I can get rid of the walker. HOPE! HOPE! HOPE! Considering this new development, I can see what a blessing it is that my getting a puppy in June wouldn't have worked. Ahh! God always has just the right timing for everything.

Are you feeling good now? or is it a day to day thing with you too?

Shepkitty - Marti and Rex are adorable. How are you feeling?

Hello Wren, Mominator & Kath.

Anonymous

Loverly, Mitzi's fur looks sooo velvety ~ such a pretty girl! Love your sofa arraignment under the windows with the sun shining in. It looks like such a cozy spot to curl up with a good book. The pic of the pup in the loo is too much! Must be one of those "designer" breeds……..maybe a husk-a-poo?

JunieB, Is it a hip replacement you are going to have re-done? That certainly would make having a little puppy to tend to difficult. How much more fun it will be to have your new baby once you are feeling better and able to move more comfortably! Must be why folks say "Heaven knows" :-) Hope your dizzies go away and all is well with your CT scans. How long will you have to wait for the results?

Marti's doctor visit went well. She had a great time visiting all the people and pets. She really likes going to vet. Plus she got to have dinner after on the patio at McAllister's and visit even more folks. She is such the social butterfly. Marti's hips and joints are "stable". The doctor does think she is having mild canine cognitive dysfunction. Doc gave me lots of information on different things to try. I have lots of research to do. Mental stimulation, gentle exercise, adding structure and routines, certain dietary supplements…..all can help with staying "sharp". Maybe I'll learn something for me too? I get wiped out very easily from constant pain and fatigue. I'll have work out a plan for mental and physical therapy for both of us. Marti and I have been a working team for so many years; can't quit now!

Off to bed……..wishing you all sweet dreams of things that make you happiest……….

Mominator

Wren and Kathy:

(Blushing) That someone was me!

There were some of us who kept hitting the wrong buttons on our phones. Moonflower dropped off the TE primer thread for about a week until she noticed.

I made the suggestions to the mods on the tech thread to move "jump to top/bottom" away from the "add/remove from my favorite topics" buttons. Similar "report this post" to move away from the the member name.

I thought the add/remove button would go to the right, but the jump was moved. Oh well. The important thing is that the buttons are separated.

I hope these changes will prevent so many of us from pushing the wrong buttons!

Does this mean I get kicked out of here?

😳

kathindc

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.

Beatmon

Wonder how long it will take my poor addled brain and finger to quit going to the left of the page ?

sas-schatzi

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.

sas-schatzi

Mominator

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.

https://community.breastcancer.org/forum/16/topics/840696

sas-schatzi

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.

sensitivehrt

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

susan3

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

Jazzygirl

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?

sensitivehrt

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.

Jazzygirl

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.

sas-schatzi

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.

JunieB

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.

http://giveitlove.com/one-pound-dog-food-for-a-she...

sensitivehrt

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.

sas-schatzi

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

JunieB

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.

sas-schatzi

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?

JunieB

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.

Smaarty

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.

Blessings2011

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!

Loveroflife

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??

JunieB

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.

Anonymous

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