NOLA in September?
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Thanks so much, y'all!! I get my treatment at UNC, but Raleigh Duke is so much closer to home! I'll see what hey say next week if I even need it....but I suspect I do. I appreciate the recommendations.
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I'm checked into the Hope Lodge. They gave me room 307 with adjustable beds...yay! The center must have requested that for me. The room and facility is very nice. I am a little disappointed that the wifi signal is too weak to even download email. I was hoping to stream a movie, but that clearly is not happening. But I can't beat the price, and I can get my email through cellular. I made it Canal St for dinner today after being a hermit since I arrived on Thursday.
Jennifer/motherandchild -- are you still here? How are you holding up?
Kristen -- are you home in your own comfortable bed yet? Doing Ok?0 -
Marsha, glad to hear you are settling in. I don't remember having a problem using my iPad there. It is a nice facility. Out front is the levee. On top of that is a walking/ biking trail. I spent some time on that before surgery. Has the weather gotten better for you?
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Marsha, that is the room I was in and the wifi was bad, I found if you got closer to the door it was better, but who wants to be standing up doing that. Hope you continue getting along good.
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Flight delays and cancellations made a 4 hour trip 16 hours - but we made it home at 2am Saturday morning and it's wonderful being in my own recliner and with my family. Friends keep asking me what stage my cancer was and I honestly don't know. I guess I should have asked that. I meet with an oncologist this week and I'm hoping I get good oncotype scores back. Dr Gray seemed hopeful that the skin he removed in the 2nd surgery would probably be fine. I do NOT want to hear that I need radiation! It's time to think of other things besides cancer and my breasts. The pain is manageable but it's going to take a long time until I can stand upright. My breasts are kind of like rocks - will they soften up in time?
Marsha - how wonderful that you have an adjustable bed! I didn't have any problem with wi fi. Maybe it's weak on the top floor?
Today I am working on my daughter's graduation and open house announcements. It's nice to do something normal!
Kristin0 -
Kristin - you sound great! So happy you are home. Yes, the breasts will soften with time. You will be standing upright before you know it.
I have never known what "stage" my cancer was and after 28 years, I don't even worry about not knowing. When people ask I simply tell them that what is important is that I had cancer and I have survived. No one ever asks more. We put too much emphasis on the definitions in an effort to mentally assess where one persons cancer measures against another. I often felt guilty that I did not have rads or chemo, sort of like a cancer imposter. It has always facinated me that when I tell people I was fortunate that we got it all early enough that it wasn't in any of the 50 nodes tested, sometimes the reaction is "oh, well your cancer wasn't that bad". The hell it wasn't. I lost my boobs. Now I am thankful for the wonderfully skilled surgeon that is enabling me to get them back!
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Wow Kristen, that sounds like such an ordeal getting home. I can't imagine. As for staging that is used to assess your treatment plan. Radiation is given if you have a lumpectomy or if there is cancer in your nodes. I wasn't sure where the margins were that needed to be reexcised. I would want to know my staging and all the other stats. You should ask for a copy of your pathology report. There is a good section on breastcancer.org about understanding your pathology. Personally i think knowledge is power. When I was diagnosed in 2007 I was up in all the latest Bc news and I requested the tamoxifen metabolizer test and I was the 2nd person at my cancer center to take it. It was not offered to me. It changed my treatment plan because I was found to be a poor metabolizer of tamoxifen, which means it was not working. I do have cancer again but no hormone positive cancer was found.
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Wow Marty!!!! That is exactly how I feel. I didn't know the cancer was there until I got my pathology report back. We caught it early and I'm thankful I didn't/don't need treatment, but I lost my breasts.
Kristen sorry for all the delays, but you are home and with your family!!!
Marsha, glad you are all settled in. You are in my thoughts and prayers!!!
Hugs to you all!!
Chelle0 -
I also feel knowledge is power... As for staging, you can figure it out on your own... It is based on size of tumor, node activity etc. There is a chart somewhere where you look at the tumor size (if multifocal you go with the largest one), and then look at # of nodes involved margins. This was very important to me because my treatment plan depended on this knowledge.
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Hey Ladies, checkin' in....
I have been discharged from beautiful St. Charles... and am now inhabitating the Homewood. I actually was d/c'd yesterday. My surgery was Tuesday... I was due to leave Friday. I was told I was WAYYYY ahead of schedule "activity-wise" on Tues/Wed/Thurs..... and then I think the crap finally hit the fan since I did not pace myself. On Friday, I felt terrible... I was unable to get comfortable and was so tired that I couldn't stay awake... So they actually lengthened my stay by 1 day. I could not get my pain at a manageable level and I also had a low grade fever.
Saturday, I was def. ready to head out... and ready for the next stage to begin. Today (Sunday) I feel really tired... I def. feel like I could roll over at any minute a take a snooze.
I can't remember who asked but the gal who was worried about the BS Dr. Corestta....but don't be!!! He's a keeper and Dr. Dellacroce worked hard to get him at St. Charles. I think Corsetta might be from Oshner too? Not entirely sure but both him and my Dr.... (Dr. Fuhrman) have both started together at St. Charles at the same time. I am quite sure I was Dr. Fuhrman's first surgery at St. Charles even tho' he had work with Dr. D for years at Oshner. Those two were handpicked by Frank. My husband calls Dr. D... "Frank"... which cracks me up.
Dr. D told me himself he would scrub in early and be there the whole time monitoring Dr. Fuhrman... he's a self proclamied control freak and wants things "just so".... He reassured me that there shouldn't be ANY issues keeping my nipples even tho' my breasts are very large and ptotic. As of now, they look good!
If anyone has any specific questions let me know.... I will say I became addicted to Iccee's while I was there... like at least 3 a day.... I was nuts.... they made me happy.
I will probably be the first gal on this forum to say that I did not think all the nursing staff was exceptional. While I feel the office staff and everyone at The Center was wonderful (those who interact with the Physcian's one/one on a daily basis,etc...) were fantastic....
I was actually disappointed serveral times with the nurses at St. Charles. There were several times that the care was fragmented, incomplete, inconsistant, and down right erroneous. While I had a few nurses who I adored (night nurses Laura/Holly, day nurse Jaime/Sarah)... there were several others who I did not care for. A couple had real attitudes, some were less than average... a few were exceptional.... and I'm not saying any of this to be controversial, it is what it is.... I just want to help prepare future new patients realize that bringing a "care taker and advocate" is a very important deicision. I'm a nurse myself and I feel qualifed to make these statements. In the end it was fine for me... but I had high expectations going in and found that my expectations were not met by many the nurses.
Ladies who surgeries are right around the corner.... don't fret.... You'll manage just fine and the time goes by with a blink of the eye. I feel so blessed to have found these physicians... They are wonderful... the facility is wonderful and there isn't anyplace I would rather be. I'm a little snoozy... I think I'll take a nap!
Also I wanted to mention... it was WONDERFUL hanging with Kristin (Klanders)... She really did look fantastic and it was such a blessing to excahnge war stories! xxxoo
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Betsy & to others...You all have so much more experience with these issues and I am seeking some opinions.
I am a bit worried about my next surgery. He will cut away all the ropes, scar tissue and scars on the skin. So, I will be cut again and it will be the entire way around my waist. My hips and butt are hard as a rock now until you get below my incision line which right now is in the middle of both butt checks.
I know my situation is a bit unique but I wonder if massage therapy could've helped me and if it is something I really need to consider after my November surgery.
Just curious on thoughts...0 -
Please understand that I wasn't saying that you should not know your stage. My challenge is with people comparing stages. You know, "Oh, you are a Stage 1? I was a 3 (or my GF was a 4)." Cancer is cancer, no matter the stage. While knowing your stage is very important and helpful to participating effectively in your treatment plan; it is really important to never, ever make another woman feel as if she has lesser cancer because she has a lower number or required a different course of treatment or none. Knowledge is power, but should not be used to make any other cancer survivor feel as if her cancer is less than someone elses.
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Chelle... Yes. I think you should get therapy once you are healed enough... My therapy that I will start this week for lymph drainage should also address scar adhesion. I will report back.
Mother... There was a nurse or two that I didn't care for... I actually requested to NOT have one for a retrun trip to NOLA, and she has been there a long time. Yes, Holly, Laura, Jamie are all great. Do know a few night nurses who I loved were let go a couple of months ago and they had some new ones come in... I think done the right way, you can tell Penny if you have issues. I do question if she told the nurse I requested not to have.
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By the way, if anyone wants to be on the NOLA facebook page, let me know... PM me.
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Well said Marty!!!
My sister of all people made a comment that I was only a Stage II, and to get over it. (and to quit having "unnecessary" breast recon surgery).
Worse yet ... I had a med onc minimize my cancer stage. Fired that one at end of first and only appointment.0 -
I wanted to know my stage in 1994 and I wanted to know for the second one in 2012. For the first cancer I wanted to know as I opted for a lumpectomy and they suggested chemo and rads (and the cancer had been misdiagnosed and was in me much longer than needed to be - so I needed to know so I could make the decision for lumpectomy vs. the dreaded mx).
This time, got it early but still some micro-invasion - so wanted to know so I could make educated decision on to recon now or later but knew my prognosis included probable recurrance and scar tissue made mammograms almost unbearable after the lumpectomy in 1994.
But I agree whole heartedly about not putting ANYONE down for having a lower stage cancer - it's kind of like being pregnant - if you are pregnant you are PREGNANT - it's a baby nonetheless even if you are a 'little bit pregnant' or 'a lotta bit pregnant'! LOL
I would be addicted to the Icee's too!
Motherandchild - being a nurse yourself probably gives you a heads up on what nurses should or should not be doing for us. Good to know that all is not always as perfect as we would like, and prepares others for less than perfection instead of thinking it must be them that caused something different to happen because 'everyone else had is perfect'.
Probably snoozing is what your body really needs right now!
Hugs0 -
My husband and I returned home safely earlier today...it was nice to get away an TRY not to think about cancer, le recon..etc. Wish my incision would have cooperated more and I could have been a bit more active. I know my hubs wishes so too if ya know what I mean...poor guy...he is always so supportive and amazing..it must be frustrating for him. I am leaning towards making the LNTx my priority for the next surgery. I need to get this LE under control. It seems strange to me to do it first if there is so much more that needs to be done to the breasts and body but I know she would not offer it to me if it was not going to work right now.
klanders welcome home and happy healing to you
Mother---sit down before you hurt yourself young lady
Maggie-2
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Had DH pick me up an icee today- I'm terribly suggestive when hearing about food things. Going through chemo I holed up in my room and watched movies - had a horrible craving for Japanese noodles because of a subtitled Japanese movie I watched. Been craving a coke icee since you all first started talking about them! But usually I have it and I'm over it! Good cinco de mayo drink if you can't have a marguerita!
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I was really very bad while I was at St. Charles Hospital. I know that I had a least 3 coke icees every day both times I stayed. It's silly but I really miss them in NC. We had 7-11 stores on every corner in Florida. Hope eveyone is doing well. Speedy healing to all that need it and I'm wishing a low stress time for those that are waiting. Hugs, J
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Okay, so now that you've said marguerita . . .
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I got a call from Dr. Fuhrman.... he was in an even more jovial mood than normal and couldn't wait to tell me my pathology was all clear....
I spent the afternoon riding the streetcars and hanging out at the Marketplace.... watching the Mississippi and sipping on virgin Daquiris.... I'm kind of tired and so very ready to see Dr. D tommorrow and hit the airport.
Take care sweet friends...
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Yay, Mother. Great news. Sounds like you had a wonderfully exhausting day. Sleep well!
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Woo hoo mother! Sounds fantastic news! Safe trip and happy healing.
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Woot woot! All clear pathology! Going home! Being home! Getting ready to go to best MX recon place there is! Happy cinco de mayo!
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Mother, what great news! You must be flying high. You will be home soon. Sleep well tonight.
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I also had a nurse that I had real issues with. The hospital sent a survey in the mail, and I filled it out truthfully. I think honest feedback is very important!
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Yay Jennifer!!!! Did you get my PM?? I never got our request.
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MartyJ, I too feel guilty and a type of imposter. I have never had the diagnosis of cancer and I want to do everything possible to make damn sure I never do. When all this first happened and I was sitting in the onc office talking over my choices I told the Dr that I felt like a fake and I didnt think I needed to be here when there was an office full of truly sick women. He told me: "Barb, it's not a matter of IF you get cancer and join those sick women but WHEN". That really stuck with me, helped me stick with my decisions.
Kristin, what a flying nightmare! So glad youre finally home (there's no place like home, there's no place like home).
Jennifer, you sound like your back on track again.
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MartyJ, I am glad to see there are others who feel like that. Every time I go to my Oncologist appointment and see others there who are REAL cancer patients.....I feel like a fake or I cheated someone because I was lucky that my cancer was caught early and I did not need radiation or Chemotherapy. When I voice this thought to my husband he quickly reminds me of the not so little surgeries I had to rid myself of cancer. He tells me I am the strongest person he knows. Cancer is Cancer regardless of our treatment or stage. Maybe I need to listen to my own self
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Yay for clean margins!!
Before my BMX we thought I had only DCIS and a very slow growing tumor called mucinous ductal carcinoma. The DCIS was extensive enough that I needed a MX, but opted for BMX due to atypia lobular hyperplasia in the other breast. My MO said no chemo and no rads (my case went before tumor board) based on this info. I said then I felt like I was getting off easy 'just' getting a BMX. My MO stopped me right there to set me straight that BMX is *not* getting off easy.
My journey took a different course after the BMX, finding IDC not seen on screenings. And more along the way. I get a mad when I read articles about 'overtreating' DCIS with surgery or 'unnecessary' BMX for BRCA+ mutations. Well, so far there isn't a CURE for BC (especially considering there isn't just one type of BC), just removal of the disease. There's no way to prevent BC (yet! I am hopeful for those vaccines!) other than removing breast tissue. Becoming more aware (not the pink aware) of what a beast BC really is gives me the understanding of just how necessary MX really can be. Chemo and radiation is rough and doesn't mean the disease is 100% gone. On one hand I am grateful for the women who don't have to endure chemo and rads. It sucks! On the other hand, losing breasts, regardless of the circumstance, is no small feat.
I think sometimes that guilt comes from putting a hierarchy on people's pain or grief. I'm starting to get some of that being in active treatment again. Like nobody around me can feel their problems or grief because it pales in comparison to what I must be going through. Well, guess what. I still don't think cancer is the worst thing to happen to me, I just look worse now! I don't believe for a second that my pain/grief is stronger or more important than someone else's and I don't let them get away with that. Or that mine is insignificant compared to someone else's. I've learned how to cope better than I did when I was younger and the pain/grief is very individual.
I'm starting to ramble! Don't know where all that came from, but I guess I needed to get it out! I've learned so much from the ladies on this thread in the past 2+ years. When I was getting chemo the first time, I met a young woman who was getting IV antibiotics after her prophylactic BMX/recon. We talked and I found out she was BRCA+ and her father died a few months before after dealing with BC for 10 years. I'm so glad I got her instantly. She read the FORCE boards but never posted. Another reason I never get upset about someone reading boards but never posting--putting it out there can give someone else courage to make their own best decision.
Hugs to all!0
