2013 Survivors!!!
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thanks everyone for being in my pockets. I have my cargo pants ready with large pockets. I will even put some snacks in for you so let me know what you want.
Aruba - love the cast. Does it really glow in the dark? Casts have come a long way haven't they.
Hugs to everyone!!!!!
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Aruba - smashing! The way it looks and what you can do with it to anyone who says something different! That seems like a huge cast for your wrist, looks like they weren't taking any chances.
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It does not really glow in the dark, can you imagine say in a movie theater or a play lol? It feels big and heavy! Now I eat that extra cookie and when I weigh myself, blame it on the cast
Momof3, extra large pocket to get this thing in there...Believe you too for Monday!
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believe - I am in your pockets for Monday also. Please let me know what you would like us to bring. I remember you saying veggies, but what are your favorites?
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Momof3 - I think carrots are my favorite but I read if you eat too many you can turn orange. Doubt I'd ever eat that many :-) I will bring cookies to your party. They taste better!
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Hi Aruba,
WOW...just what you need. But a great color choice. Matches everything in the wardrobe I suspect. And how long do you get to wear the "jewelry"? I think we should start a on-line signing.
Unless you want a pristine cast, please have someone with a Sharpie write " Ohio Aruba, best to you always!! xxxooo Gracers in California"
Gracers 55
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carrots can turn you orange ? that made me laugh.
The avatar is for the New Orleans Saints who lost today to Seattle - BOOO!!
I was never into the NFL being English and loving soccer (which we call football) but we were in New Orleans the year the Saints won the superbowl.... and since then I've really got into it. Much to the delight of my DH. I was going to update with a pic of me... but cant find a recent one so will have to take a selfie soon. Just like the cast selife - ha ha!
Jumping in pockets... can I bring martini's ?
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Thanks everyone!
Believe Dr is in Lake Havasu City. I do go for a consult on Tues to Tuscon. I've been saving going into Gem World for if you get here.
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Joined: Aug 2013Posts: 359
Jan 10, 2014 09:47pm ndgrrl wrote:
Hi Everyone. been awhile since I last posted. Been busy trying to get unemployment which is taking what seems forever and my old job is fighting it, saying I voluntarily quit( they eliminated my job) and that I was not available to work( I was on a dr ordered medical leave) grrrr
I decided to get a 2nd opinion and saw a new Oncologist- I really like him- very young but took time to answer all my questions and kept assuring me I would be fine and patting my knee, I mentioned to him my older sister died in 1999 from stomach cancer and how I had a cousin age 45 - a niece age 33 - me age 44 and my older sister age 60 all diagnosed in 8 months time.
He said please try to get your sisters records. He said new studies are showing a genetic link between some breast cancers some stomach cancers.
I was not sure how to go about doing it but with the help of my niece and my sisters husband signing for it I was able to get a copy of her pathology report showing what type of stomach cancer she had. I mailed to my oncologist. He must have looked at it right away as his nurse was trying to get ahold of me. Hubby relayed the message so I stopped at the cancer center as I happened to be at the rehab center and the oncologist had a short chat with me-- He said do not worry- I don't want you to worry- but you need to be genetically tested ( I had been BRACA 1 and BRACA 2 tested and was negative) he said you need to be genetically tested for E-cadherin. He said my sister had the type of stomach cancer that is also associated with lobular cancer- My cancer is ductal but he still wants me tested and if I am positive I will be tested for stomach cancer regularly.
Been feeling rather bummed since I read my sisters pathology reports from way back when she was only 41 and relived what she went through before she passed in 44 and now to find I may be genetically linked to get the same things is really hard to swallow.
I still am a bit in shock over all this news and it really scares me- I am trying to get my genetic testing scheduled- he said its not an emergency but get it done in a month or two.. Then patted my knee said you will be fine- do not worry now..
I really hoped 2014 would be better..
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ooooooooh crud ndgrrl ,,,i'm sooooo ticked off for you too!! very frustrating & my heart is with you!
Sorry to hear
Lostinmo also!! Can't name each one of you.. but my heart & thoughts/prayers are with everyone!! I'm so busy with my skinny Fiber business (lovin it btw) and working, my DF was here for his 80th and Xmas & I put on a big party on the 22nd for his bday! he's finally gone home, xmas is almost put away.. i need my home back to norm.. wasn't even finished doing everything after the move and Christmas kinda slammed me!
AM happy to hear about this cool glow in the dark cast.. way cool!!!
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JuneauBugg.. the book.. WHAT THE HELL IS THIS SHIT? I think perhaps I wrote it in my other life (IF I believed in that) or someone wrote it knowing full well what would transpire in my time. So if I vent & be pissy.. is that me having a pity-party?
First I want to say.. I've been way over the top too busy (almost as usual) perhaps I get that way to avoid the quiet, then the thinking of just how much shit a person can go through!! I do try to keep up with everyone & the posts!! my heart smiles (yes my mouth too) & my heart drops with each update from everyone.. will we EVER stop wondering if we'll get IT back or WHEN/WHERE we'll get it back. I honestly believed I just wouldn't get it back anywhere.. and to date haven't found any....although NO ONE IS EVEN LOOKING maybe I'll LOL here!!
on the UP-side .. I'm more blessed than many people I know!! I'm alive and don't want to not be.. but man.. emotionally & mentally I"m exhausted from fighting the medicals and having to be such a loud mouth advocate for myself.
IF any of you remember my blubbering about lumps that were growing in my abdomen months back.. well, yep there still growing & multiplying.. took 5 FIVE months to get Dr to do a Ultra sound.. even though I've had it done I'm still so angry that I had to endure all that.. finally getting my way.. which is the proper way after so much pushing, arguing & yes crying and banging my fists (no not at the Dr office.. had to remain as though I were sane) got sono.. this is how vague it was (& was the fastest U/S i've ever had!!) "There are a number of benign APPEARING lipomata (I capped the word).", it goes on to say the largest on each side. ok. yes I figured they're probably Lipoma's, yes I already knew from having one in the arch of my foot (which is rare) that mine seem to grow fast.. hmmm just like my breast lump wasnt' there days prior .. nothing felt in shower then BAM! so these are 'multiple lipomas'.. finding out WHY the said 'appearing' means they don't want to commit to a DX.. they did not know I was a BC survivor, also they state 'there are a NUMBER' uumm.. hello? how many 5 10 20 100? omg.. I'm so fed up.. so we dont' discuss it much.. he said it's a huge operation, I don't want nor am I a good candidate for surgery, but they're growing pretty quickly and sometimes bringing a bit of pain/discomfort, but the ones under my rib running all the way around to my back get real uncomfortable & owee.. especially after I eat. Since that scan, I've gotten about 4 more close to my spine..and now feels like a biggy higher up in my abdomen closer to chest. NOW.. I'm not saying I think they may be cancerous.. however.. !! I would think that it all would warrant a further investigation.. there are Multiple Lipoma Syndromes and one of them is a direct link w/Breast Cancer. I'm not wishful thinking, of course not.. I just want to be checked.. too many ppl I know havent' gotten checked & it was found too late. This ALL started almost a year to the day after the dble mastectomy!!
So back to Dr 1. to get my thyroid AGAIN figured out.. it's so out of whack!! 2. insist on further investigation.. omg.. he kept saying .. trust me, I've been doing this for 40 yrs.. well, buddy.. do you have xray vision? have you dealt with Multiple Lipomas & a survivor too? no? oh well. .. guess your a genius.. lol n GAWD i'm lengthy yakker. so after a long debate.. No I won't go to a dermatologist who will only FEEL them and do the same thing as you, NO I won't go to a surgeon cuz they only wanna cut.. oooooh your sending me to the LUMP CLINIC at the Vancouver Cancer Clinic? ooooh.. Gals.. I wanted to slap him!! I had to drag it all out of him.. I said.. listen.. had I not had cancer, I wouldn't be making a huge deal .. (well.. I prob would).. it's RARE to have cancer in amongst Lipomas & ALMOST always benign..but the way I get all the weird things happening to my body and the struggles I go through to get action .. OMG
soooo He(DR) says to his girl, I don't know the name of it or who refers her, but you find out. and he said something about biopsies.
I know this is gonna take a long time, and that was one of my points!! by the time I get in they'll be even bigger!! I'm NOT freaking out that there may be possible cancer.. but of course my brain can't be there 100%.. so am I paranoid? or ?
I've also gotten abdominal lymphodema not arm type it's not terrible but it's quite bothersome in evening. Not many ppl get that one.. it's always usually about the arm.. so yo see why I"m like.. someone check me out PLEASE damn it!! I've mentioned a few times that I need follow-up / feel my chest time.. but that's been going on for a few months.. and I think he does't like to TOUCH the patient. yes I'm seeing a new female DR on Tuesday.. but now what do I do now that he's getting the ball rolling with this other stuff??
whew.. xo Cher
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so I hope I got the bad out for the week today. I have been having shoulder pain that I attributed to pain from my AI, but last week I went off my AI and most of my joint pain went away except for my left shoulder which has been getting worse each day. I went for my final ortho appt for my knee and asked him about my shoulder and it turns out my rotator cuff is damaged and I need to go to PT again for 4 weeks. At least I don't need surgery yet! With my DD appointment and my dermatologist appointment later this week I am praying that the worst is over for the week. I also start PT Thursday morning. At least I know the PT place well and like the therapist.
In pockets as needed and HUGS to everyone!!!!!!
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momof3 - yes, it can only get better! We will keep you and your girls wrapped up in gentle healing hugs and positive thoughts. This is going to be a long week.
My appt was ok. I don't have to go back for 6 months. Not quite the year off I was looking for, but that's better. My vegan days are over. I expected her to be delighted - not. Since I can't eat soy, I have practically no source of protein, in her experience, I'd be anemic in 6 months. I've gained 2 lbs since my last visit. Doctor said some of her patients on Arimidex have gained between 25 and 30 lbs on Arimidex. Affected breast is still swollen and the color isn't back to normal color yet. Oh well - I don't go back for 6 months! That was my rainbow. Blood tests were all in the normal range.
Cher - Oh My Goodness - I'd be a total pest as well, we have to be our own advocates. Stay after them until you are satisfied with their responses. I send you strength and prayers.
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believe - glad you had a good appointment and get to have a 6 month break.
Today will be better for me!
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momof3 - I'm in pockets today with good snacks for you and obnoxious jokes for your DD. my DD is about the same age so I got some good ones. Did my Saturday night fever impression as she was walking out the door to the bus!
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Momif3 - in your pocket with lots of very positive thoughts and cookies!
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Momof3---pockets full of carrots for the good girls and peanut M&Ms for me and anyone else not so good.
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Thanks everyone for being in my pockets. The snacks were great and the jokes were even better. So the surgeon wants to do surgery on both spots again and will take quite a big piece on each spot, but hopefully we will get clear margins. The stitches will be internal though so it should look better. She is having surgery next Wednesday. At least the wait is short!
Now I just have to get through my dermatology appointment tomorrow.
Thanks again everyone!!!!!!!! Hugs to everyone!
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momof3 - my sister had that recently in a suspicious mole in her face and they recommended using aquafore to help minimize scarring. I'll be baking in prep for next week so if I'm sleepy in your pockets tomorrow just throw me a latte!
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Karen - thanks for the extra use for Aguafore. I had a bump frozen off my leg today and will start applying it. It also works great on dry elbows. My DS picked it up for me before my surgery in 2012, he's so generous, I have the largest jar I've ever seen. Always looking for ways to use it up.
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Just want to say HUGS to you all xxxxxxxxxxx
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you are most welcome Believe!
Tazzy your avatar is perfect being my two besties are off to a weekend in New Orleans! Wish I could've gone but my daughter had a gymnastics meet in Atlantic city tomorrow night. Oh bummer and woe is me a night at a casino! I'm picking up lots of boxes of salt water taffy for the pocket parties!
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lostinmo: This sucks.... they took the lump out already so aren't you already NED??? Is chemo just preventative? What regimine are they putting you on? Jumping in your pocket my dear....
Marian: I'd be terribly jealous if it weren't for the fact that I get violently motion sick! Try to RELAX... remember - stress is the illusion of control!
momof3; glad you have a game plan now. I actually have my annual derm. appointment next week. My sister had skin cancer in 2011 - they took a chunk of her arm, and then another chunk the next year. This last year she's been on though. My dad though it was "funny" how there's no history of cancer in our family and yet we both got cancer within 12months of each other. I told him I didn't think it was so "funny". (of course he meant STRANGE - but when you are the one who lived through it - using the word funny didn't sit too well with me - even if he was being sarcastic.
Cher - GOOD FOR YOU..... you keep pushing until you get some answers. Like Believe said - be your own advocate.
So I'm off to follow in Ramols footsteps this weekend. Going to Rocking Horse Ranch with my DH, Dad & step mother, 2 step sisters (on lives in NYC the other in Los Angeles, their 3 little ones, (8,7, & 5), my sister (Connecticut) and her husband and their two college aged kids. The two sisters ditched their husbands this year for a divorce so we went from a group of 15 to 13. The reason? My dad turns 75 next weekend and all he ever wants is all the kids in one place. SO - I'm going to TRY not to hurt myself with food since I can't eat eat over 3/4 of what is there... stay active (there's plenty to do) and not take a cheep shot at the sister that managed to manipulate them into buying a house for in Brooklyn Heights - (while we are paying for our own freaking house!).
Speaking of the house... all the artwork is hung so I will be posting photos or video in the next week.... it's HOME now.
Gotta run - love you all!
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Hi everybody, I do not post here often anymore, but I do read. Just want to wish all of you amazing women a belated happy New Year with lots of positive experiences, peace, love, joy and fun. Sorry to hear about bad things happening to some, and happy for those who are doing great. This group has been such a great support to me when things in my life were really bleak. All the best to you!
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Hi Liefie - good to hear from you. You've been missed. Where are you hanging out these days? Happy New Year to you too. We all hope you are doing well.
Juneau - looking forward to your home photos.
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So my dermatologist did 2 biopsies today and will do one more in about a month. Now the waiting begins. I should know the results in about a week. I am glad that I went, but am sore now since one is on the bottom of my foot. Hopefully it will not get any worse, but I have lots of meds to take if needed.
Thanks to everyone being in my pockets today!!!!!!
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Liefie,
Good to hear from you. How was your trip? Just figured you were not back yet. I don't post much anymore either but do enjoy reading how everyone is doing.
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Karen: sorry you are missing out on Nawlins - but hey Atlantic City aint a bad substitute
Good Luck!Believe: hope those fires in California are nowhere near you.
Juneau: Enjoy your outing - sounds like fun. As for your sister... let it go - you will feel more proud of what you have achieved on your own.
Hugs to everyone xxxxxxxx
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lostinmo, like juneau I was wondering what the chemo regime is and how long it is for too?
juneau, how was the guided meditation night. It is so good for me but I just have not found the space or discipline on the boat. I like your saying that stress is the illusion of control. Only a few more days and then back to winter and meditation and lots more exercise. I have been swimming/snorkelling every day and even though there is still a lot of wind and thus boat movement I have been sleeping better and have definitely got my sea legs now.
Cher, I hope you get it all sorted out as it has been way too long waiting.
Websister, good to see you here and hope that your anxiety is quelled by now.
Tazzy I did not know you had gone to a less stressful HR job but sounds as though it was meant to be!
Liefie how was the wedding and being back "home" in SA for a month?
Momofthree and Believe, so many biopsies and concerns~~hope all ends up OK.
juneau also meant to say I hope the weekend is good and that everyone gets along!
WiFi is still flaky so will end here and hope this goes!
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It's been an interesting week. Tuesday we went to Tucson for a consult and this place was amazing. I felt like we were walking into a hotel more than a cancer center. Meeting with the Dr proved educational for all of us. One of the main things we found out is that after my mx they had not retested the tumor for her2 and they hadn't tested the one on my arm for it. So he has requested to the slides to have his pathologist to retest it so we know for sure I am TN. The other thing is my chart doesn't really show how well the a/c worked, because the original tumor grew on Taxol it looks like I didn't respond to chemo at all. He said that it was important to know because it opens up drugs related to the a/c that can be used.
He ended up spending almost 40 min. with us which is more than any other Dr. He told us he could coordinate with my Dr here but in the end we decided that it was in my best interest to move down and let him take over. That's the advantage of being a full time traveler.
To answer the NED questions, no I am not ned there is another lump growing on my back along the shoulder blade. He said he could have a surgeon remove it but if we leave it for now it will let us know visually it the chemo is working. What chemo will be decided when he gets all the test results in. I schedule a PET scan later today to see if the back is the only place it is.
The day ended with me feeling more positive about everything even though it finally sunk in that I am Stage IV. It's hard to believe that when I feel fine.
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