NOLA in September?
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Jaimie - everytime I ask the ACS, they never get back to me!!! I will try again.
Trishia!!! Hells bells. Please keep us updated!!! Did they try to look at the nodes on US?
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Trishia - My gosh! I'm so sorry you're having to deal with more of this crap!
Tracee - So sorry you're having such a bumpy ride. Well at least you've got a bird's eye view of the parades... I hope someone is going down there and collecting some beads for you!
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Yikes, I only have eight hours until I'll be at the park with my workout buddies, so I have to make this short. I haven't been here for a few days and I'm sorry to see that you are dealing with tests and concerns again, Trishia. And Kim, so sorry about your job and your dog. I'm sure something even better is in store for you, so keep your chin up. I have missed your inspirational fb quotes too. My longtime dear friend Lisa's sister had surgery for a tumor on her optic nerve last year, and ended up blind in one eye. We just learned that the tumor is back, and inoperable, but they are going to try radiation. Side effects are just about guaranteed, but the tumor is growing rapidly and her prognosis is lousy. It's not malignant, but the location is really bad. Colleen is a pediatric nurse and probably won't be working within a few more days, in fact may never be able to go back. It's been a sad week....and our friend Joe's funeral in Michigan was Thursday. No arrest for his murder yet, but it appears that he knew he was in danger and was getting rid of stuff in his shop (he customized Mustangs and Shelbys. Trishia, Tracee, Kim, Anne, Alaina, Robyn---my thoughts and prayers are with all of you.
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So much going on for so many of our wonderful ladies here!! ((((((((((((Tracee, K9, Trishia and Sandy))))))))))) Hugs and happy thoughts to you all! We have all come so far, and we did it together...we will be by your sides for all that lies ahead!
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Oh my goodness Kim! I just re-read the last few pages of the thread. I am SO SO sorry. That is horrible. (((HUGS)))
Thank you for the good thoughts. I appreciate them. Nordy, yes they were seen on an US and do not look pathologic, but have been enlarged for over a month. So it's probably just me being lumpy.
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Tracee - how was your weekend? How are you holding up? Thinking of you.
So, we waited on drain #2 and finally pulled it on Sat (it was in the low 20s)...feels great to shower without wearing my drain necklace. Freedom! Unfortunately, my elation is short-lived I am definitely collecting fluid in my tush under the incision where the other drain was pulled a week ago. It doesn't hurt. I called NOLA this AM but they are in clinic so I probably won't hear back until later. Does anyone know if this is normal -- is the fluid (a bit like a water balloon) okay as long as it doesn't get hot, red or make my incision bulge? I'm hoping that's the case. Should I start looking for a local doctor/radiologist to aspirate it? or will it start to reabsorbe and this is normal? Please, someone say yes!
Thanks!
Kathryn
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Kathryn - please go get it aspirated. Developing a seroma, particularly in the hip/glute area is not at all uncommon. However, this same particular area is prone to opening at the incision line from pressure from the seroma. It is not a big deal to have it aspirated, and it needs to be free of fluid to close up. (Think of the fluid in this space as being an open cavity filled with fluid - it needs to be free of fluid so that the space can close up.) This is why the Center is never in a hurry to have you remove your drains. The risk of NOT doing anything is not only that your wound may dehis (burst open) but that you can also develop a pseudo bursa (where scar tissue forms around the fluid). My local PS drained mine and it was not necessary to do under US guidance, but each doctor has his/her own preferences. So... get busy!
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Sandy - I am SO sorry you are having all this to go through too.. sheesh...
Trishia - super happy that they do not look pathological. I have a lymph node on the left that is super reactive... I always know when I am getting sick... but it has always been negative on US, PET, CT... etc.
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Kathryn - I have to agree with Nordy! My seromas were deep so I had ultrasound guided aspirations at my local Radiology facility.
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Thanks for the replies, Nordy & Xfitgirl. NOLA called back and said hip seromas are super common. They said to get it drained sometime this week but it didn't have to be tomorrow. Nonetheless, I got the name for a PS in network and am seeing her tomorrow AM. Her nurse mentioned possibly going to the hospital and getting it catheterized and I said I think it's just a needle aspiration (a catheter sounded way overzealous to me!) If necessary she'll refer me to a radiologist but NOLA said a PS should be able to do it without issue. NOLA was closed by the time I worked out the details on my end -- but I will call them tomorrow AM and they said they have something to fax to the PS.
Hoping to be less inwardly soggy tomorrow.
Kathryn
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Trisha, I am so sorry, I would worry about worsening lymphedema too! Can you get an MRI of those areas instead of a biopsy? I had another breast MRI 2 years out b/c my rads onc wanted to see under the chest wall and also check my lymph nodes. Maybe a biopsy is better, but just mentioning. Thinking of you. You have an amazing zest for life and a fantastic attitude despite your genetics and all these tests and issues! You are my attitude HERO!!!
Daze, What size are you?
Hello all you other goreous ladies!!!! xoxoxoxoxoxoxox I am up North visiting family this week adn working remotely. My Mom had been hospitalized, and is not in rehab, and next we're moving her to a nursting home for dementia/Alzheimers. Sort of sad, but the place is nice. We are pulling together as a family dealing with it! Saw my Mom and she smiled and lit up, she remembers who I am. I don't know why that is so damn important to me! But it is!!! Thank you God...
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Spring_ ((hugs)) I hope you can get everything worked out.
Trishia- You have to come and tell us, because we love you. We are here for you ((hugs)). Hope you are just lumpy.
Kathryn~ I also had a seroma drained. It is fairly easy.
As for me I am heading back to the kidney doctor. I have a lump to the right of my belly button and my back has been bothering me....grrrr... I had an artorey (sp) running acrossed my ureter causing a pocket of fluid around my kidney. I had it fixed in Aug. 2009 but I seem to think it is back....grrrr... I fired the doctor that did the surgery due to his staff but I would rather go thru more stage 1's than do anything with my kidney. The thought of being catherized or having a stint makes me want to RUN!!! So any prayers would be great, is it bad that I am hoping for an infection or just a fat pad.
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Jaimie - I hope that it is something simple. Of course, thoughts and prayers and positive thoughts your way. Trishia's way. Spring's way. Sandy's way. ((((((hugs))))) to all of you.
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((((SPRING)))) Of course it's important to you! I hope all goes well for your entire family.
(((JAMIE))) Damn girl. That sounds painful and no fun at all. I swear you have as bad of medical luck as me!!!
The hospital called to schedule the biopsy today. Only to realize upon my questioning, that they really don't know what they are doing and need to look at the films again before making a decsion. Ugh. It's not inspiring a lot of confidence. Why can't I have every medical procedure done in NOLA?
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((((((((((Kathryn, Beverly, Trish, Jamie, Kim, Sandy)))))))))))))))))))))))) all together like that means I'm hugging all of you and you're hugging each other, too!
Thinking of you, too, Anne. Coming up!
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It has been along time since I have posted. So Hello All. I have decided to go back to NOLA for a stage 2B or 2 1/2. My one breast is bigger than the other and if I raise my arms the bottom falls out of my bra. Also the are fixing the indentation on my stomach. Belly Button problems seem to be better although small, but I can live with that.
Right now I am planning my trip to United Kindom to see my sweetie, Leave in 18 days. We are going into London for a night to celebrate his birthday.
I miss you all, especially Nordy and Minnesota. Who have helped me a whole bunch. Minnesota I was thinking of you last week when it snowed here for 3 days in a row. You would shovel and then the next morning wake up to more shoveling. Then yesterday it reached 50 so it was a mess and now all that has frozen. I will keep you updated on my surgery date. Jeannine is to email it to me today,
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Thank you for the hugs ladys. I just wish the appt. was today so I can get it over with. The though of a stint is like fingernails on a chalk board, especially since they take it out in the office without any sedation unless you include all the xanex and ativan I take before hand. Yup, I drugged myself up good and still was yelling at the doctor to hurry the hell up.
Sally~ I hope your 2b evens things up.
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Sally! It is great to see you on here! I wish I could go to NOLA with you! I am excited for you to go to the UK. Keep me posted!!!
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Just got back from the PS who drained my left hip. She only got 20cc (and it still looks a little wobbly on the outside but I can see the difference. No feeling in my butt so the draining didn't hurt one bit.
She was quite curious about the whole NOLA thing but seemed a bit disapproving (of my going so far away and also doing free flap - whatever) - even after seeing my surgery. She still does Lat flaps and pectoral muscle/implants) so maybe she's a bit threatened
Nonetheless, she was very nice and is happy to keep aspirating fluid for as long as necessary (also she's in network so it only cost me $5 out of pocket!) Hopefully my other hip will behave itself.Minnesota - thanks for the much appreciated hug. It is so nice to come on this board and know that there are others who get it!
Sally, maybe you'll come in mid-May and we can meet!
Jaimiah, good luck to you. Sending you ++ thoughts.
Springtime, I felt great to read that your mom smiled at you -- so it must have really lifted your spirits!
Thanks to all of you!
Kathryn
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Just got back from the PS who drained my left hip. She only got 20cc (and it still looks a little wobbly on the outside but I can see the difference). No feeling in my butt so the draining didn't hurt one bit.
She was quite curious about the whole NOLA thing but seemed a bit disapproving (of my going so far away and also doing free flap - whatever) - even after seeing my surgery. She still does LAT flaps and pectoral muscle/implants, so maybe she's a bit threatened
Nonetheless, she was very nice and is happy to keep aspirating fluid for as long as necessary (also she's in network so it only cost me $5 out of pocket!) Hopefully my other hip will behave itself.Minnesota - thanks for the much appreciated hug. It is so nice to come on this board and know that there are others who get it!
Sally, maybe you'll go to NOL in mid-May and we can meet!
Jaimiah, good luck to you. Sending you ++ thoughts.
Springtime, I felt great to read that your mom smiled at you -- so it must have really lifted your spirits!
Thanks to all of you!
Kathryn
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Back on chemo again, the liver biopsy was positive and the dr says I have studs on my left lung of cancer. At stage four now and really having a hard time with that fact. Thought I had kicked the cancer to the curb and now suddenly I feel like I am in a war that I can never win, just a matter of how long I can battle.
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Oh Brenda I was wondering about you...I am so so sorry ...my heart is breaking for you...
Please log on to www.her2support.org to gain more information about battling this beast from
the others on that site. They are a great bunch and many of them have been in your shoes.
They are warm and welcoming AND seem to be on the cutting edge of anything her2+,
PM me if you'd like,
Marcia
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Oh Brenda, I'm so sorry
I know it's a fear we all live with every day! What are studs on your lungs? I Know I just started getting a cold again and it always freaks me out, I think about it every day what if..... 0 -
Brenda - So, so sorry to read your news. You're just going to have to kick that damned beast to the curb again! And keep kicking until we have a cure, once and for all!
Sallym - Hi! Boy have we gotten snow this year! It's been years since the piles from the snow plows have been so high! England! Lucky girl - and lucky guy for having you visit him!
Kathryn - One nice thing about being numb - no pain upon aspiration!
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Brenda! I am so sorry that you are having to deal with this! (((hugs)))) - and fight like a mad woman!
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I haven't been around much, as we are still trying to settle into the new building and we are also becoming very busy with orders. Half my team is sick with some respiratory thing and so those of us still working are a bit overwhelmed. However, I wanted to check in before going to bed, and I was so sorry to see your post, Brenda. I wanted to tell you that you can battle for a long, long time---many years in fact!
Thank you all for the hugs. Working hard keeps my mind off of other stuff. I'm also dealing with a tax audit and we've found that the employee who was calculating taxes while I was away having surgeries didn't exactly do a good job, so I owe a bunch of money. Hopefully I'll have the final figure on Friday and then it's just a matter of paying it, the idea of which is strangely not as stressful as worrying about how much it will turn out to be.
Hugs back to all of you. I miss keeping in close contact with everyone!
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Brenda, I will certainly be sending prayers your way. Stay strong.
I didnt hear from Jeanine yesterday but that does not surprise me because she told me I would hear from her the first week in January. I didnt push the issue because I wanted to go to England and the belly button cleared up but now I am ready. Nordy I wish you were coming to. (Ya know I dont have a set caregiver yet HINT HINT) I sent Jeanine an email today so I will keep you updated
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Hi Ladies,
Brenda, I was also thinking about you and wondering, and so sorry to hear your news. We all send you hugs and love and strength and prayers for endurance as you figure out the next steps. I am so glad you let us know what was up with you. Dragon is right, we live with the same beast.
Sandy, hang in there, you are accomplishing something so major! I've marveled at all your FB pics over the weeks.
Mom will be moved out of Rehab and into the Nursing Home next Monday. I am so glad I came up here for all this prep. I will be back in NC by then, but my sister is taking off work to be with her. She told me the other day I look "30-something" at which point I got up and gave her the biggest hug you can give a little old lady in a wheelchair you've ever seen!!!
SallyM, let me know when you get your date and I will add you to the list. Soon you will be evenly balanced and no more popping-out boobies!!!
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So... today I spoke with Liz on the phone and am investigating the trip... I have a few options NYC, Baltimore, Charleston or NOLA... and I live in NJ... so you would think NYC would be easiest... but even in NYC, I can't go further than 30-45 minutes after my hospital stay, so I'd need to stay in the city... and at least in NOLA I have a friend who has offered her son't empty condo and to be my caregiver... PLUS something I didn't know until today... if I have a post surgery problem, NOLA flies me back on their nickel... That makes it more doable in a pinch... and I would only NEED to go twice if I chose to get tattoos locally.
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Sally - you let me know the dates and I will let you know if I am available. I will tell you that until mid-June, however, my husband is working a TON... yeah for extra $$ - not so happy for being mostly a single parent...
bdavis - I told you that they fly you back either in one of my PM's or one of your threads! Really... they take care of SO much for you.
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