new to forum, diagnostic mammo and ultrasound found large lumps

Thank you. I thing your psychiatrist gave great advice! I am trying, and I feel pretty positive today, following my pre-cancer routine.

I am so glad Harvey didn't get you. We are worrying over Irma now. I'm in the Clearwater area (near St.Pete/Tampa). I've been here nearly all my life and have never evacuated before. A couple times we put up sandbags to prevent water from coming in the house, and taken in all the outdoor furniture and hanging plants and other things that could be flying objects in high winds. The gas stations all have long lines (we need gas), and the few stores my husband tried are already out of water. I'm not even thinking evacuation at this point. It seems like so many times it has shown the hurricane path is going to hit us directly, but it turns and we are spared. Praying that is the case again here.

Irma! Irma! Irma! That's all I can think about. I've been through the threat of, and the minor effects of SO many hurricanes. But Irma is affecting me to such a greater degree. Probably because my emotions are out of whack to begin with! Also, the weather channel spaghetti noodle models have all the noodles going right over my house. Plus, my WBC is so low, I can't get a cut or infection from anything, let alone hurricane debris, plus the stress is affecting my GBS, my legs are feeling more paralyzed!

E, just checking on you to see how you weathered the storm. My sister was very lucky. Wind was an issue, fences down & some tree limbs.

I can't believe it's been so long since I've written. It certainly hasn't been because I've been busy. Just about the only thing I've done is binge watch tv shows. I needed to see the newest season of House of Cards, and since it had been over a year since I watched season 4, my husband and I went back to season 1 and went through every episode through season 4, and just this week started season 5. With a gf down the street we binged on Stranger Things. One of the cable channels has been airing old ER episodes, starting with the pilot. Supposedly there are 15 seasons of ER, but so far they just keep repeating seasons one through 4 over and over.

I've done my pre-cancer warm up routines maybe only every other day. I am up to 4 push ups. I am stuck at 45 sit ups, and the last ten kill me. Splits are still difficult and far from complete. On a few of the 10 point balance moves I can hold the position for a few seconds without much wobbling. But once I do the pivot on my balancing foot, it's all over...... I mean I keep going, but each of the moves I do after the pivot is pitiful. It was never this hard as a beginner. Duh, I have GBS and my feet are numb and I have no sense of balance, so I know I can't expect quick, or even complete success.....perhaps ever.

I've been having a pity party for the last couple days over my hair....which is stuck at 1 1/2 inches, and stands straight up all over my head. Anyone who has followed my thread from the start knows that I have hair issues. I had quite long, and pretty, hair. I'm not a young person, but I had young person hair. I'm not sure how many more years I would have kept it this long, or even longer, but I do know that when the time would come for me to have a more mature person's hair, I would never, ever gone for a mannish cut, like many older women do. And once again, please forgive me for having such negative emotions toward very short hair, I have no idea what childhood incident put that imprint in my brain, but it's there.

Actually, there are four things I've managed to do for decades, because I didn't want the negative consequences that would almost certainly come later. Living in Florida my whole life, as a kid and teen and sometimes one's entire life, is spent enjoying getting a tan. When I was VERY young, like 12 or 13, I kept overhearing my mom and so many of my mom's friends (who were in there 30s and 40s) complaining about the "sun spots" on their hands making their hands look so old. And way back then I remember I started putting SPF 30 on my hands, and I did it daily, even when not tanning, and to this day I do not have a single spot on my hands. Another thing I saw when I was pretty young were the debilitating effects of osteoporosis, and I vowed I'd never end up hunched over. So I read that I needed extra calcium, magnesium, vit D3, and weight-bearing exercises to ward off bone loss through the years. And for decades I have diligently taken those measures and it has worked. When I had a bone density scan before surgery, she said I have the bones of a 25 year old. The third thing was I didn't want to end up with missing teeth or dentures when I was old, so even though I never went to my PC doctor for an annual pap smear or breast exam (STUPID!!!!!!!).... I never missed a six month cleaning.

The 4th thing I've worked on for decades was the hair. I know I sound so vain and shallow. I am lucky to be alive. However, these four things I had control over for decades, and for decades I have succeeded. The hair was lost overnight. It came out 2 days before Thanksgiving last year, and even though I stopped chemo in February, seven months ago, I only have 1 1/2 inches of hair. And my hair grows hideously slow, it always has. So I will have this mannish hair for a very long time. I can't wear a wig every moment of the day---they get hot, itchy sometimes, and I'm sure it's good to have my scalp "breathe".....

It's so hard to have worked on something for decades and have it taken away overnight, and not easily or quickly replaceable. I guess I'd feel the same if chemo caused my teeth to fall out overnight and I had to wait a very long time to have them again, or if I'd woken up suddenly hunched over, or my hands suddenly were covered with sun spots, and I wasn't allowed to even cover the spots for a long time.

So decades of living a certain way to achieve certain results, and then to have one thing gone is traumatizing me. I do feel ridiculous saying that, but it's true.

I still have this deflated right tissue expander and the right side of my chest is quite ugly, yet I'm not traumatized by that. I'm irked I still don't have a surgery date to replace it, but that's different. There was nothing I did every day to protect my breasts, so the loss of them isn't as hard on me, maybe. Maybe if I had religiously done self exams and never missed an annual checkup, I'd feel more "cheated" out of losing my breasts. But I was stupid. I avoided breast exams from as early as I can remember, because my breasts were large and I could feel lumps in them. I'm sure as a 12 year old the lumps were nothing, but I was scared to know for sure, so I just never continued with the self exams and kept away from doctors unless it was unavoidable.

Aye, aye, aye.... I go from not chatting at all to babbling like a self-centered idiot. Of course I have other things on my mind that are depressing me besides my stupid hair, but perhaps it's just easier to pin ALL of my hurt and angry and helpless feelings toward my hair, than it is to address the other issues.

Best of health and positive thought to all. I need to remember this, too, and stop wallowing!

Post Edited (exqualls) : 9/22/2017 3:18:16 PM (GMT-6)

Susie, your trip with friends sounds GREAT! And then the big concert/party at your house! You definitely need a rest from having fun--it takes a lot of energy, so I hope you can chill out and do as little as possible for a couple days.

Thanks for thinking I'm not vain and shallow about my hair, and for pointing out that men go through trauma when they lose their hair from chemo, too (as well as the unlucky men who lose it through genetics..... but that's more gradual. It's the immediacy that your hair is there one second, and the next second it's laying on the couch next to you that is so devastating.)

I will look into wrongful termination. I have always been so quick to presume that everyone is doing the right thing and not breaking any laws or rules. I've always been that way, and often it has been to my detriment.

I am curious as to what TV show got you to binge?

So I did start the process with the EEOC as my first step to find out if I was wrongfully terminated. I was so sure that I was not, but since a couple of people have mentioned that I should look into it further, I am. I don't want to be stupid or naive, just because it is my natural inclination to believe that I was treated fairly. We'll see what the legal minds have to say about it.

i had to look back to the beginning of the thread almost to find out just how long ago my right expander failed, and I was surprised it was so long ago.... early to mid-November. So for ten and a half months I have had what is a truly horrible looking (and feeling) disaster on the right side of my chest. The "hardness" of the other expander does not bother me, as it can't be felt with the expander filled up and rounded out. But on the right side, where it all just collapsed and caved in, there is an easily viewed, and felt, very hard and round "lid-shaped" THING under my skin.

And tomorrow morning it will be SIX WEEKS & THREE DAYS since I was at my PS office to get, what I thought, would be a surgery date to swap this disaster out for a new one. I was disappointed to walk out that Monday without a date, and to have to wait until "maybe up to the end of the week", as the doctor had said, to get the date. I still have not heard a thing.
Two times when I called the office to ask if there was a date yet, I was put on hold while she checked my file or whatever, and was then told both times that the doctor was still getting the information she needed before being able to set it up. I called again yesterday, during business hours, but got the answering machine, and I left a detailed message about how anxious I am to get a date, and even more just to get an update as to what the hold up is, and if there was anything I could do to help. No call back before close of business yesterday and no call back today.

I have been patient. I have thought about what "things" could be holding it up-- like she wanted to have written confirmation from each of my doctors that it was okay to proceed even though I have GBS. So I allowed a decent amount of time for that. Then Hurricane Irma had a significant impact on my county and some doctors' offices were closed for up to 2 weeks.

But WHY hasn't anyone been able to tell me what is causing the delay? I'm starting to feel like I've been "dumped" by my doctor. It can't be something that she's happy about.....to have to re-do a surgery because of a product failure. Maybe she called the insurance company for pre-authorization and they said "the patient already had surgery for tissue expanders, we're not covering it again".......Honestly, if that is the issue, I may lose my mind and not recover it. I CANNOT deal with the endless insurance problems, denials, appeals, any longer. I have started imagining my life going on with my chest being left as it is..... if she's "dumped me", I guess she won't be switching out my left expander for the implant, either! This is where my mind starts to spiral out of control, and all I want to do is curl up in a ball on the couch and cry and watch TV and just not deal with any of this again...When I imagine that I have enough "oomph" to DO anything, I've thought about calling my surgeon, who coordinated the original mastectomies with this PS so she could start my reconstruction by putting these expanders in as soon as he was finished getting the cancer out, and asking HIM if he has heard from her, or should he recommend a different PS to "finish up". But I hate that idea, too, as I can't imagine anyone doing a better job on making all these scars virtually invisible.... But then again, what good are invisible scars on one side, and a hideously deformed, caved-in, and lumpy looking (from the "lid" shaped expander showing through my skin), on the other side? If another, less technically proficient doctor did my right side, and the scars look bad....that's got to be a better result than I have right now.....then again, I am CERTAIN that bringing another doctor into the mix WOULD cause questions/delays, etc with my insurance company, and I really am just imagining that no one is going to take responsibility for this mess ....okay, see how I'm spiraling?

This was supposed to be the "easy" part. Reconstruction. I heal well and quickly from surgeries. I already got the cancer out of the way, done with chemo, done with radiation, and this surgery (although an extra one that most women do not have to deal with), I was ready for--- looking forward to, even. And now nothing is easy again. I was looking forward to the surgery as a RELIEF almost, as it would be a clear sign I was moving past just being a person with GBS. I'd be a woman who was moving toward completing the process of recovering from cancer. Ugh, my brain is going around in circles.... circles that are spiraling the drain.

In less than 30 minutes it will be 9/28 (EST), which is exactly one year since my mastectomies.

Susie, I forgot to ask how your relatives in Florida made out from Irma? Did anyone have much damage? I hope not! I think Pinellas and Hillsborough counties (where I'm guessing they live), got off fairly easy...mostly loss of power a few days, and limbs down. A couple counties away peoples' homes are STILL half underwater and you have to use a boat down the streets!

My husband called the PS's office and was able to get a promise that the doctor would review all my information and call me tomorrow. I called the neuro's office to see if they had sent whatever info the PS needed, and am waiting on a call back.

E, I really do empathize with you over this PS not returning calls, that is not a good sign to me. While she may have the best set of credentials to her credit, there is no excuse for her not returning any of your calls. I mean no excuse. If this is how she handles all of her patients & something tells me yes, perhaps it is time to switch. I think you have an excellent idea of calling the dr that referred you to her. I am quite sure he knows of more than one great PS. Rather than trying to speak with the dr directly, what about asking to talk to his nurse? Or what about scheduling a short appt with him to discuss this? Your phone calls have not been about piddly little concerns, this is major stuff. I am sure she is busy, but being too busy to address something like this, I say move forward with someone new.

Ok, once again, brain fart when it comes to the legal stuff. I know EEOC checks for what is called discrimination with an employer, such as age, race & religion & ect. I don't think your situation falls in that category under Wrongful Termination. I suggest getting online & look for an atty that does labor law, make a phone call or two to get an idea which direction you may possibly go in. It would take a just a few minutes to do this. I had to stop working in 04, it certainly shows what I have forgotten too.

My sister in Tampa had only debris & some branches that fell on her roof. She was very fortunate. She was quite scared so we pretty much texted throughout the night. Between my son & I we kept her occupied as much as we could. She is 75 & lives alone so it was tough for her. We kept reminding her to keep her phone charged, her power was going on on & off. Very thankful she is ok.

Keep me posted on this PS thing. I would be willing to bet the surgeon can help you get another excellent PS. Take care.

E, usually there are a couple of letters that will come after the initial. I cannot remember what my original letter said about Medicare. SSD can be awarded two different ways. They will award it for x amount of time, then do a review to see if the person is still disabled, or award it on a permanent basis. Either way, this little windfall could not have come at a better time & will help with your COBRA payments. Since they went back to March the clock starts ticking on the Medicare. Congrats on getting it.

Oh, your LTD will continue with SSD, so yes, you will have to keep LTD informed with records. SSD gets an offset since you are entitled to LTD. Normally the two should bring you up to what you made while working between the two payments. As long as drs deem you disabled the two will pay normally to the age of 65. Once a person turns 65 the LTD stops & you are kicked over to SSD with an increase in the check from them. At least this is how it has always been.

Wow, finally, finally you get a call from your PS. Lets hope she follows through as she says she will. I am so relieved she finally called you.

Will be praying this thyroid thing is ok!!! Will look forward to a good report once your dr tells you what it showed. You will not find out anything today from the tech. Take care.

Your LTD will continue & you should continue to receive it until you are 65, unless your LTD has a different clause on the length of time a person can collect it. Also, you will have to continue to provide the LTD people with notes stating you are disabled too. You don't want to ever forget to provide them with updates either. Once those bums stop benefits because of not having that "disabled status" getting it resumed again is nearly impossible. They have incredible stall tactics.

My neighbor was an RN, she became disabled & was put on LTD. Her policy required that if she was off more than 6 months she had to file for SSD. They offered any assistance she needed to apply. She was awarded benefits & received them until she turned 65, along with her SSD check. When she turned 65 LTD stopped, her SSD check was increased to make up the difference.

Unum, which is one of the largest providers for LTD, was sued quite a few years ago. They were denying benefits with proper medical documentation from members, kept telling the people we didn't get it or we need more information, a new rep was now handling the claim it was unbelievable what they did to people for years. It came out that the reps were told by their superiors you deny & stall, they got nailed dead to rights when that came out.

If memory serves me right, lol, I binged on a show called Iron Fist or Iron Hand. It was totally not something I would ever watch as a weekly series. But, it sure got my interest, lol. I also use to watch a show called Person of Interest, it was a weird one too, lol. By the time I started watching it, it was into several seasons. I found it on Netflix one weekend at the lake & started at the very beginning & understood the show a little better. So, now you know my two out of the ordinary shows I binged on lol.

Take care.

I do not think I have ever said "congrats on getting a surgery date" to anyone until now, lol. The date will be here before you know it.I can't believe it is already October, summer is gone. However, we are still pretty warm here so I am not complaining.

E, please contact your LTD company, you should continue receiving it along with SSD. The two combined should pay you what you earned while working. The only way it would not be like this is if your LTD policy states it.

What about the thyroid scan, any news on that?

E, now I understand the LTD situation since they have this clause when SSD is awarded. Either way, I am thrilled for you to get those benefits. What a relief!!

I just clicked back to August 2016. All I can say is you have been on some journey since that time. Many bad situations & obstacles along the way. But, at the same time you have had blessings along the way & I will continue to pray this continues.

about the nightmares, it sounds like a combo of anxiety & post traumatic stress thrown in. Just to throw something in if this continues. There are members that were having some pretty bad issues & some had talk therapy & others learned how to practice Mildfullness. Learning how to stay in the moment. You have given a little hint about what all took place in that long hospitalization. Look it up if you are remotely interested. In 04 I started having horrible panic attacks, all health related. I had never had a panic attack in my life. I was a mess for some time.

I think it is fabulous that you are doing the exercises. It is wonderful for you in many ways. I think sometimes when we feel we are losing some control & then try to start taking back some at that control it is healthy for us.

Crazy Texas weather, shorts one day, jeans & a jacket the next. We never have much of a fall here, our seasons are not typical. Springs are very short lived just a few weeks then instant heat. Over the years our weather has certainly changed.

Take care.