NOLA in September?
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Thanks! And I want all the details of the weekend
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bdavis: glad you had a good night and plan to be well rested for tomorrow's date with Dr D. How's the weather in NOLA?
brandyb: when do you arrive in NOLA? Good luck with your upcoming surgery.
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The weather is beautiful... was about 80 when I arrived today... supposed to be in high 70s all week.
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Betsy I will be in New Orleans for my follow-up. If I get there early/before your surgery time I will see if they will allow me back to say Hi and say a prayer with ya. I know that you will be excited to be on the other side of Stage 2!
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Victoria, please accept my apology for not attempting to visit you while I was in NOLA. My hotel was out near the airport and I was at the Center for the EnCourage meeting Wednesday night, but from there immediately went out to dinner with some of the Center staff and graduates. I didn't have a car and I stayed out in Kenner because it's closer to my friend Alaina's home. I'm glad you are doing well.
Best wishes, Betsy!!!
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Surfagirl, I've been on a number of swamp tours and I think the Honey Island Swamp Tour is the best one. They will even pick you up at your hotel. In addition to all of the other seasons, I've done it in January, and there was plenty of wildlife. The alligators are dormant, but we saw a few--they just weren't moving around. We saw many different birds including an eagle and white egrets, several snakes, and the nutria were running around everywhere. The trees weren't green, but I got some amazing photos of the sun behind them. As long as the weather is nice, I think the tour is definitely worth doing.0
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BDavis: You'll probably be going into surgery soon but it's still Sunday for me; almost midnight. I pray that everything goes well with Stage 2. Lots of hugs to you. Glad that you were able to spend time with your mom; that's special.
SandyinParadise: Thank you for the suggested tour company. We'll see if we can fit them into our schedule. I will tell my husband we can do it January.
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Almost time... hopping in teh shower then I am off... YIKES!
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Best wishes Betsy.
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Betsy's day! Thinking of you!!!
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Hi Ladies,
Stage 1 was wed and I'm here at NOLA for another few days. I am hangin out in the hotel today. Bad night. My bed is so soft and I can't sleep sitting up so for about an hour I slept just flat and I know they tell you not to do that but I couldn't help it. Now my boobs (foobs?) feel strange and a bit hard. Is this normal? What did you all do to sleep in an elevated position? Thanks!
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Victoria -- I piled up the pillows and made sure there were several under my knees. As I had basically been sleeping in that position since my mastectomy in March, it seemed pretty natural. Make yourself a cocoon and burrow in. It now feels weird for me to sleep flat -- and I am a side sleeper!
Betsy -- You go girl!!
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Cider8 I did get my schedule. I am set for 7 am so they must really move fast on stage 2. Will be a short night but I never sleep anyway.
Victoria you probably have swelling going on. The fluid mIght have collected there when you were flat. It will even out. You will have the hardness come and go for quite some time. I think someone here equated it to the milk letting down feeling where you get the tingle-hardness-heaviness feeling. I often have it when I get up from laying down, whether I was reclined or not.
Hope to hear good news from Betsy soon. Good luck brandy!0 -
I somehow envy those ladies whose surgeries are scheduled at a more reasonable hour, e.g., 9 AM! Just got word that mine is 7 AM on the 20th December and I am expected to be there at 6 AM!! Yikes! But, as KBodie said, I don't sleep much anyway!! Stage 1 I was scheduled for arrival at 7 AM and was wheeled into th eOR by 7:25! Must be Dr. D wants an early start so he can get Christmas shopping done! LOL!
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7 a.m. is better, then you don't have to be hungry or thirsty for very long! I have an 11 a.m. surgery next Monday. That's going to be torture.
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Betsy - thinking of you...you're probably in surgery right now. Good luck.
Jerusha - I have spoken to so many women that have a clear genetic predisposition to breast cancer - but they tested negative for the BRCA. I recently spoke to a geneticist and she definitely feels that the tests are not adequate as conducted for everyone. Basically, it's like spell checking - they can only check for the words on the paper (meaning the exact things they are looking for) but if you delete part of your text it can't check for the words you have chosen not to use. So if there are other genes and mutations that they are not specifically looking for and aren't on the radar - and those aren't being tested. It is all very frustrating. But even knowing you have the mutation - you don't know if you're going to get a certain type of cancer - you can only be vigilant about monitoring and the truth is - once you've been touched by cancer you can't help but being hyper aware. So maybe it doesn't matter if you have the gene or not since many of us still go the same route.
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just a pre-op update on betsy...dr D told her no probs/fears with necrosis in her pre-op appt!!!#@$%^ so she went into surgery a very happy camper !!! i gather he was running late, so news from her post -op might be later than you all thinking, hope we hear from her tonight though, rosemary
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celtic - I like the earlier one so I don't have to sit around waiting to leave for the center. I had my stage 1 at 7AM and they said I could shower before I went to bed and do the wash - instead of at 5AM! I'm actually so surprised you know your time already!
Victoria - I piled pillows on either side of me, behind me and under my knees. I found having pillows under my arms so they were a bit elevated helped too. Also, it took a few weeks after Stage 1 to get a good night's sleep. There is so much going on with your body, your mind, your meds, etc...it takes awhile for things to settle back down. But eventually it does!
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Oh, I prefer the 7am call time as well! It is going to be so hard not to eat or drink in the morning. It's not so bad when you stumble into the Center at 6am. Plus, if you aren't first, there could always be a delay. Also, my caretaker will probably get breakfast...and I'll be jealous! I'm a breakfast eater. My husband waited to eat until after I went in for Stage 1.
Rosemary, thanks for the good update on Betsy.
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Hello Ladies Dr. D was running very late today. I had an 11 am appt and I did not see him till around 12ish? I had several stitches removed and was given a 3 day break from the nipple guards. Dr. D said to simply cover them with a telfa bandage. He said to be patient as i wait for lipo result. I was like dude you did a great job because some of my clothes already fit better. So I guess the best is yet to come. I have to go back on the 5th to have the rest of the stitches removed.
So I asked if it was okay to travel to Birmingham AL for a meeting Laura-Yes Celeste--umm.be safe? My husband felt like i had dropped a bomb on him. Then came my mini-meltdown. Big meeting tomorrow so my first day back to work would be a 3.5 hour drive and be gone till Thursday. No sure how I feel but I have been off for 2 weeks and I don't know when the perfect time to return would be especially since I am just sitting around....
When did you guys return to work?
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my two surgeries have been early. 5:45 am pickup. i loved getting in early and getting it over with before my hunger pangs came.
rogam - yeah for break from nipple guard! are you dom free? one more sleep in the DOM for me. I can't wait to be free good thing you are in driving distance to have your stiches removed. i will call the center tomorrow to see if i can remove my stiches.
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2 more weeks in the dom for better results. Getting those stitches snipped was like ouch!
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Hi ladies... still feeling anesthesia effects, but here I am.
Surgery was scheduled fo 11am but was leaving the Center at 11... Ro, you were probably in the seating area when I came out and i didn't know it... My mom was sleeping in a chair... Not sure what Dr D was doing this morning, busy, but he got to me quite late too...
So.. Dr D marked me up but good. He revised my ab (including hard knot) and hip scars, butt lift, portocath scar revisions, remove two freckles on outer breast that looked suspicious and will be sent to patholgy, left nipple and LIPO, plus all sorts of breast revisions.
So, to answer a few questions:
- the hard knot just above the ab incision is from the old belly button, but he said he would remove it for me
- Louis13 asked me to ask about lipo and FUTURE fat / weight gain or loss... When he lipos, he leaves a layer of fat to avoid having the skin adheing to the fascia. With that layer, it prevents that problem of fat never returning to a lipo site.. and this is good. I had heard that and can you imagine if fat landed in your ankles? wouldn't look too good... as for any weight change, it may be a little different from other fatty areas, but can be controlled.. hopefully, I will not gain!!
So, I have a pain pump, YAY.. but the ab pain I had at wake up with is bascially been controlled with meds... no other pain ... of course I have not moved out of bed (have a catheter) and sitting up did prove to be a bit uncomfortable.. so for now I am staying put.Back n my old room 208.... was originally in 203, but by the time I got up here they had moved me without my asking, knowing I like 208... BIG room and close to the Icee machine
More later.
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Betsy -- SO glad to hear from you. You have been on my (and many other minds) today! Rest and relax into the meds ... no hurry here. Damn ... you are some gutsy lady ... and a great model for me when I start my 'WHIMP" stuff! Rest well, heal quickly, sister ...
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Kathryn ( and others), there is a VERY interesting post, relevant to this issue of genetics, written by a member named OBGYNDOC. Kaitsmom showed this to me, and I was shocked -- but very appreciative to learn this new info about the BRACA testing.Please note, I do not know anything about this mysterious poster-- it is her one and only post -- or about her reasons for posting --- or even the accuracy of the post, for that matter. I suggest that people look it up. Basically she states that the routine BRACA test by Myriad Labs called ComprehensiveBRCAnalysis only tests for the 5 most common gene rearrangements . Myriad has a protocol to determine who goes on to get the more comprehensive test, called the BART. When I read this, I checked out my report and , sure enough, it said 5 site rearrangement panel! No one ever mentioned this to me!!! I found this to be so disturbing that I was not informed that there was an additional test available. Even if the likelihood is very low that my comprehensive test would be positive, I feel that I should get to make the choice.( I remember reading a ways back fromnJustLaura who said she got one test and her sister the other-- presumably without their knowing ...[ am I right, Laura?] ). The Myriad web site seems to conveniently omit all of this info. My jaded view on this is to suspect that their reimbursement on the BART drops off and that it is not as much of a moneymaker for them. In fact, the BART may actually get done outside of their lab. Don't forget, Myriad has a patent on the regular BRACA testing and no other lab in this country can do it. When I went for my routine f/u onc appointment last week , I asked to have the BART done. This is a very academic practice with well informed docs, and they seemed unknowledeable about the whole thing. In fact my doctor checked off "Ashkenazi panel" on the lab slip, which I later changed to include BART. Since the website doesn't say what this is, I have been trying to find the data. I think that the Ashkenazi panel tests for 3 mutations, but may be a subset of the 5-site. Still searching on this and not sure.
Betsy, good to read your pain-pump post ! I guess I had some pretty funny communications with my kids ( big kids, not little ones) the night after Stage 1, so when I went to NOLA for stage 2 they said they were looking forward to some more "drunk texts" from mom.. After so much waiting, it is done!!! Hope you have a restful, comfortable night.0 -
Betsy glad you are on the other side of stage 2 surgery......hoping it will be smoothing sailing on out.
stay put and rest up!
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wow betsy, good to hear your news and thank goodness!
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Yay Betsy! Sounds like you did great.
Jerusha - the Ashkenazi panel is called the Founder Genes - they are the 3 genetic mutations most commonly found in this group. That does not mean you couldn't have something else but it is less likely that you do. This is outside of BART (which I recently found out about too.) When they ran my panel they should just have done the 3 founder genes but the surgeon requested the whole panel (more $!)...even though it turns out I have one of the founder genes. This is not a very well-understood test even by the professionals...and like so many other aspects of our health - we need to take things into our own hands and advocate for ourselves. If you feel you have some gene you should call Myriad and talk them directly about your other testing options. Good luck!
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Do I SOUND drunk/medicated??Hope not, but for sure still foggy.
Anyway, I had the BART upon request.. It is also done at Myraid. I think I had to qualify for it, but we made it happen. I think your doctor is at fault for not knowing about the comprehensive test .. I didn't know what it called but knew I wanted to, and wanted it covered!!
Rosemary.. I would have called but my throat is SOOO dry. But to repeat myself from earlier, the necrosis I thought I had, he said was not.. and he could break it up.. may be SOME necrosis, but it wasn't all necrosis.. I will report back when it doesn't hurt to press it..
And got my POST op picture with Dr D BEFORE surgery as I don't think I will see him at post op... but he did mention coming by tomorrow
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Betsy - Welcome to the other side of stage 2!!! Sounds like all good news!
Kathryn - Well, happy Cancerversary! I am sorry that you had to go through all of this to meet all of us, but I am really glad that I had the chance to meet you - both here and in person! A billion hugs to you!
BRCA - yes, I was tested. And despite a strong family history, I was negative. I think they worry more about the gene that carries breast and uterine cancer for me... but alas, I agree - even with a negative BRCA - we often follow the same path. My doc did chemo up front to shrink the tumor to allow for lumpectomy and rads. After chemo - all I wanted was to live and never have to repeat that whole thing again if I could help it - I opted for mastectomy. Still had rads... then when my sister was diagnosed with BC almost a year to the day after I was, I opted to have prophy mastectomy on the non-affected side. Then after my second daughter and a miscarriage - my husband said we were "done" having kids, so out went the ovaries and uterus (still kicking myself on that one... would sooooo haved loved another baby... ). So... long story short: negative BRCA, but chose the same path. Life is worth living and I think we all just do all we can to do just that.
Oh, and PS - Betsy - your post above does not sound medicated - but one of the previous ones did - but only a little with a couple of dropped letters here and there! I would think that is normal and really a lot better than expected!
Surfa- I am with Sandy on the original Honey Island Swamp tour. I went on that one with her - it was fabulous... even though I really hate snakes and saw plenty of them. We only saw a couple gators that year - too chilly- saw many more on a different tour I took last fall. BUT I accidently took a different tour company and it was no where near as good as the Original Honey Island tour - do not be fooled by imitations!!!
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