Nonnie917-89591

Hey lady, how are you?

I am so sorry you are having problems with our computer but I am also relieved that it is your computer and that there is nothing wrong with YOU! I just realized the other day that I was missing your kind words and always helpful advice. Hope something can be done with your computer but, in the meantime, thanks for checking in. Take care. Grace

Thanks for the encouraging words. I start treatment next Thurs. Will do Tacotere and carboplatin with perjeta and herceptin. Doc says this is the lesser of the evils. Hope he is right.

Just passing thru and wanted to give you huggs , hope the Holidays were good to you .

Hi Nonnie, I miss seeing your posts and just dropping by to check in on you and hope all is OK...best wishes. Grace

Hi Nonnie, I hope that you are well. I've been off line because one of my stupid-unbelievable problems came up. My mother died in Oct. I sent an Email to my baby brother in Japan. He didn't answer it. He travels to the Philippines a lot-we know what happened there.

He and his wife have been having health problems, and he won't use a laptop or community use computer for security reasons. He's worked with computers so much that he turns his off for months.

After a week, I contacted the Marine Corps, and they said that telling him that his mother died was against privacy laws. It took me 5 hours of calling Red Cross to get a human-I used 5 phones at the same time to jam the lines. They told me the same thing about privacy laws. I told them everything was paid for-but he needed to know that his mother was dead.

I put his phone number and home address on Yahoo-then Yahoo removed all of that information from my Email. I have over 2,000 books, and it took me over a week to find the address book-no phone number.

I spent days getting into military camps' portals, calling, sending Emails-they either were blocked for security or were returned about the privacy laws. Nov.29, 2013, my brother received the first certified letter that mother was dead.

He called me last night, as he Emailed all of the phone numbers to me. He wanted to make sure that they worked-I could call. I will say this--the Japanese phone system has some really odd ring tones when their phones ring.

Nonnie, it seems like a person could fill out a form to tell a marine that his mother died. I tried the Red Cross Red Crescent people finder. The UN no longer has it's International lost person locator. It's a real shame, as after Katrina, the stupid red Cross and International Red Cross locators didn't work at all.

I used the UN locator, and found about 40 Vietnamese that were in shelters that ranged from East Texas, Arkansas-to Georgia. I was a volunteer ESL teacher and my students began asking me to locate friends-family. Then I helped the people on this end to arrange for bus tickets, etc. to get them out of the shelters. That was another instance of the local Red Cross being useless, it wouldn't help then.

Hi Nonnie. I'm sorry that I haven't contacted you lately. I finally have a new primary care doctor-an internist. I'm on antibiotics again because I still have strep. I'm taking antibiotics again. Since May, I've been feeling like my head was in an oven roasting. I hate to say this-ashamed-but I was very hostile to my new doctor--Poor guy-he just took it. I think that he's very nice-but my perceptions have been so weird from the fever-physical pain of messed up thyroid and infection. Several weeks ago-I even had boils on my face. Enough about negative things. The new toilet is still working well-nobody stole it. I'm just grateful that we'll get our VA and SS. It made me scared. I've been through the Reagan and Clinton shutdowns, but is the first time the VA was affected, and the grocery stores on American bases were shut down. Congress used the same letter for funding that they used with Clinton and Reagan for funding for military support. There are some bases in the West that are about a 100 miles from a town-and lots of the young kids don't own a car. When I was really young-we were stationed at a radar station that was a joint command-mostly AF, some Navy, and Coast Guard. We had to go 60 miles to a town, then a naval air station that had a grocery store-and department store-was was 30 miles farther away-we had to go to that NAS for medical care anyway. We didn't have a car, so an AF wife took me in tow. Gas was cheap. So we made a caravan of cars, took anybody sick, and got our groceries. Gas is expensive now. Democrat and Republicans congressmen were both saying this is the first time that the grocery stores were shut. That after this, they'll have to specifically list repair parts for aircraft, tanks, grocery stores, food for the military kitchens, and money for dead people. The grocery stores did stay open in Japan and South Korea. Anyway-take care of yourself-

Hi Nonnie. I'm looking at your posts below. Your words are so true. I called the ACS-national desk- and they have law school students that give legal advice on how to handle the situations of the doctors forgetting about you. You are online more than I am, so you might want to tell people this. Sometimes, just telling the staff that you contacted the ACs is enough to get things moving. They are good in giving advice and strategies in different situations.

When I had my biopsy, the surgeon told me that speed was of the essence. My primary care doctor said the same thing, and he got me into the cancer clinic immediately. Once up there, I was told that I had to be on the fast track. Maybe I was on the fast track, but the engineer and conductor were out having lunch.

Unfortunately, many patients have to navigate on their own, which makes it hard in many ways. others expect to be contacted by a Nurse navigator, doctor, or somebody from the oncology staff. A patient has to figure out how hard to push without being kicked out-nasty things on their records that make it hard to get care.

They need to start out as friendly, polite, they have to pretend to be understanding and talk in a friendly way. Then escalate. they also need to reach out to as many people as necessary-write letters or Emails to have proof-then you have the dates, etc.

Hi Nonnie, I just want to say that I see your "welcomes" to the new folks and think you are wonderful for all you do on this site...hope you are doing well. Fondly, Gabba aka Grace

Hi Nonnie917, thanks for the welcome! I have certainly appreciated all the support so far, and I've only asked a few questions in the last several months about my husband and it sure isn't fun to now ask questions about me, too.

Thanks for your reassurances. It really helps! Have a good day and good luck to you, too.

Dear Nonnie,

Fortunately since I had an idea that my computer was getting sick, I backed up all my data to an external hard drive as well!...;)

Thanks for your welcome back!
Aliza

Hi, thanks again for asking! See the oncologist tomorrow & have my "Herceptin: IV. Only have to have it every three weeks until next April 2014. I feel like its a vacation compared to the hard chemo. Took a nap for 4 hours today! I helped my seniors clean up our clubhouse craft room & package up a 1,000 greeting cards we made over the last months. I could barely walk to my apt. Tired, weak but I made it! I'm thinking about staying off from work another 2 weeks. Do you the extra time off will be beneficial?

Hey friend haven't talked to you in awhile but I've had a lot going on today really isn't a good day for me. I'm really sad and I just can't shake it. the girls are fine. Hope all is well with you!

Hi, I was off line again. I had my heart tested yesterday. It's in perfect shape. Sounds odd, but I was put out by that. I just wanted an answer. The cardiologist bluntly told me to get a new primary care doctor, the current one is dropping the ball far too often, and it's a miracle that my heart isn't damaged. Furthermore, the system is supposed to be set up, so referrals come from PCPs, not the ER or Urgent Care.

The system is set up, where you have one contact to change PCPs. You get permission, and then if they approve, they put you on a waiting list. My neighbor down the street has been on this list for 6 months.

The phone system for the whole plan was out yesterday. So I decided to call small clinics. I did the finger thing-wave it over a list of network clinics until I got a good vibe. I called that clinic. They have an internist that likes to do primary care, because so many thyroid, and others problems aren't diagnosed, so he likes to find them.

That system worked well in finding my ENT and dermatologist. When you have a doctor shortage, and people with good doctors don't want to share, because then it makes it more difficult to get an appointment, the vibes from a piece of paper is as good as anything. It's like finding a good fishing spot, you see somebody with a string of fish, and they smile and say the fish are--- and you can't find a single fish. Some will tell you the truth, because they know you'll go the opposite way.

Hey friend I hope you have a great weekend. All is well with me I'm a little tired but as soon as I get off it's nothing but rest for me!!

Thank you and best of luck to you and your family also.

Hi Nonie971, I don't think you read some of the answers since I posted my question. My Dr does all his surgery at the "surgery center" not a hospital. And when I talked to him yesterday he assured me that he does not do these kinds of procedures in the hospital because of the germ factor. That being said, several other girls have written to let me know that their bilaterals were done in 1 day and they were then sent home. My surgeon does these at least 3 times a week and is very well respected here. I originally asked about surgery stays because I thought, like you, that it would be at least 1 overnighter, but I am satisfied with the other girls stories of everything going well with them. They are doing amazing things now a days, aren't they?
Thank you for your imput and congrats on your healing process.

Nonnie, Re: the cancer antigen 27.29.
The information on the web says it is non-specific and can have false positives. So, maybe ask your oncologist about it. I was just wondering if anyone else had experience with this test my oncologist says it could go down and have other factors contributing to the results. Still not happy to hear the comment, "Your cancer markers are up."

Nonnie, just looking through posts from when I found What Next. Your comments were so encouraging. Thought you would be interested in the next chapter of my journey. Today I saw a new breast surgeon & scheduled bilateral mastectomy. Finished BC treatment July 2012. This new cancer is Paget's disease in the same breast. Because of my history I opted for both breasts to be removed. I am very comfortable with my decision and know God will walk me through this yet again. Romans 12:12 has been my mantra and I just read this... Don't let your suffering become your identity. I have taken this to heart, my identity is in Christ and I am blessed. I hope you are well.

Hi Nonnie917 applebutter sound so good!!! I've never had it but maybe I'll try it now. I know making mass qty's would probably be too much but if you have a great recipe you could make just enough for a craft fair in your area and make some money and have some fun at the fair too looking at other peoples talents. I sure would like to try yours too!!!! KimG09

Hey Friend!
Hope you are doing well. I am good just a little tired but otherwise ok. I went on Friday and got my bra's with my new fake boob and it looks great!. After seeing this I don't think I want to have the surgery after all. The girls are fine and waiting for school to start and for us to move. I hope all is well with you and your family. Have a GREAT DAY!!!

Hey Friend how are you?

Hey friend!
I see you are having surgery tomorrow. I will be praying for you. Keep me posted. All is well with me I've started eating snacks in the day time and I am actually able to focus better and sleep better at night. My granddaughter is GREAT so all is well at this time.

I have Fibro. too. They also told me the pain might decrease with age. I'm in groups and no one seems to find that to be true. Vit. D has helped me. But getting older just means I can't override the pain with youthful energy!

My vote is no one with Fibro should also have to deal with cancer!!!

Hi Nonnie. Reading your Journal made me feel better. It seems that so many people here are happy, happy. I'm not. There's a difference between being grateful and being happy. I'm so sorry that you had to lose both boobs, and then the doctor didn't seem to care how you felt about his sloppy job.
My first doctor seemed to have that attitude in the extreme. He was so arrogant. He wouldn't answer questions-and lectured me about being too detailed oriented and I should trust him. My grandson went with me to the second appointment, and scared some answers out of the carnioso-Spanish for the worst doctor ever-it's not a cuss word or dirty-It means a surgical quack. Anyway, when we left, my family said that I definately needed a new doctor-- It took me over a month, but I got one that can laugh with me.
There's nothing funny about cancer-But----I was diagnosed with skin cancer on my lip-nose. So the pharmacies and doctors' offices don't open up til 8 am or later and close at 5 pm. Then nurses, receptionists, other patients, pharmacists, etc tell me that I shouldn't be out in the sun at all.

To try to keep from going into a rant, where the people think that they need to call 911, I say-but I'm living a vampire lifestyle, and this clinic isn't open at midnight-. Then they carefully ask me how long I've had this delusion, and do I drink blood.
One day I went to a cancer group-I spent an hour or so, having everybody tell me that I shouldn't be out in the sun. I broke down and ranted to one of my doctors about his staff that was involved in the lecturing at the group. .
Apparently, he lectured the staff and reminded them that there aren't any midnight appointments for anything.
Fri. I had to pick up a med that makes a person stay out of the sun. I quickly said-I have skin cancer and live like a vampire-. The pharmacist said--Okay, I don't need to lecture you, good luck.- and he gave me a sad and friendly smile. That's the way it should be

Hi nonnie
Could you please let me (us ) know how you make out with the genetic counselor and your pursuit of genetic testing.
I too am the 1st in my family to get bc( other cancers have shown up) and I have an appt. w/ a counselor on the 15th of aug. I would like it done for peace of mind for my children.
Mikilog

Hey friend!! I had a great and yet tiring weekend. I went to the doctor yesterday and he sounded very optimistic so I am considering the reconstructive surgery. I am waiting for the CT Scan of my stomach so that they can see if this will work or not. I will keep you posted. How are you feeling? When is your trip? Have a GREAT DAY FRIEND!

Did you finish your procedure and can you share how it went having a double masectomy and implants

Hey friend! My granddaughter turns 1 on Saturday so I will be busy with her this weekend. But I just wanted to say hi and that I love you and I will talk to you Monday after my doctors appointment. Have a GREAT WEEKEND MY FRIEND!

Hi Nonnie,
Thanks for thinking of me. I appreciate it! I enjoy reading all of your comments each day. My cancer did come back to the skin on my right arm and right breast with a new occurrence to the left breast. I am currently on TDM1 which is a chemo that was just released in February. It was used in clinical trials prior with great results. I have absolutely no side effects. I will not lose my hair either. I feel fabulous. The good news is that my BC has still not spread to anywhere else in my body! Plus, after only one chemo my doctor saw pretty good results! Once again thanks for contacting me. May you also be feeling fabulous on this beautiful summer day! Risa