NOLA in September?
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Oh Chelle! That is tough to go through. No wonder why you needed a nap. I am so sorry. Hopefully, you can forgive her at some point and move past this. It may take a while when you are so hurt. Prayers for you girl.
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Hey Chelle, we understand and this is a safe place to vent! Praying for you tonight. Most people just don't get it. We do!
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Hi Kristin. How ate you doing?
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Sleep well Sharon. We will be waiting to hear from you. 🙏🙏🙏
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Chelle, I am sorry you had to go through having a friend disappoint you. You seem like a very loyal-type person so it just hurts even more when a buddy does not seem to have your back. She has NO IDEA what you are going through. I have noticed that the only folks who understand are ones who have gone through similar circumstances... That is why this site does a lot of good. Peace to you.
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Hi Cherrie, thanks for asking. I'm doing well, all things considered! Stage 2 is so much better than stage 1. I was dizzy last night so didn't sleep as well as I would have liked. I don't know if it was from the dilaudid or low blood pressure. I've decided no more pain pills and that has been fine. My breasts are a little tender, but they have been since stage 1. The only real pain I feel is when trying to sit on a toilet! (Maybe TMI?) :-) Any hard surface is tough for me. Thighs are horribly bruised on the sides as is my lower back. Somehow I managed to gain 5 lbs during surgery. And I must be pretty swollen because my waist is 3" larger than when I went in. :-(. I really can't tell yet if I'll like my final look but I'm hopeful! I'm tired today so I've just been laying low.
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Thanks for all the hugs and prayers. I'll go in early tomorrow for stage 2 and hysterectomy (Audrella, Dr. Von Almen!). I'll post when I can.
Chelle, I've given up on some friends never understanding this journey. I am eternally grateful for all of you ladies who do "get it".
Marty, I hugged our Dr. On Friday and she is skinny!0 -
klanders, aren't toilets the most painful experience after lipo??? The first time I sat on a toilet after Stage 2, I jumped up and looked for the sharp stick that I thought had poked me in the thigh! The dilaudid made me very dizzy too -- I couldn't turn my head without getting disoriented. Glad you are resting well.
Michelle, so sorry to hear about your experience. It sounds like your friend knows that she was being clueless. You might want to forgive her one day, but it might not be now while you need to focus on yourself. Some friends make it easy to simplify when times are trying. I'm sorry you had to go through this exhausting experience after exhausting surgery.
Sending good thoughts to ssla and mtpeteacher!
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Sharon - pleasant sleep today!
LA & Klanders - now you are making me think I should reschedule my Stage 2c. That is when she will be doing hip & thigh lipo. How long did the "discomfort" (a mild word) last? I suppose if surgery is on Thursday, I won't be going to holiday parties on Saturday and Sunday?
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MotherandChild5, I just added your 9/26 stage 2 date, per your PM.
And I agree!!! Sitting on toilet seat after lipo, OWIE!!!! (makes you wish for one of those cushioned seats!)
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Marty, you should be fine at the parties - as long as you don't have to sit on hard chairs. I think you will be tired, though. I've had no trouble on walks. (keeping them short - around a mile for now.) But I'm not sleeping as well as normal and I'm pretty tired still. But it is NOWHERE as bad as stage 1! Dr S lets us sleep on our sides if we want but because of the bruising I generally wake up every time I roll to the side. If you are like me you will be swollen, so you might find it tricky to find the right outfit to wear to the party. And I have these plastic nipple guards for a week (then I switch to soft nipple guards) so that makes what l wear a challenge.
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Thanks Kristen! I totally forgot about the nipple guards. That would really make dressing a challenge unless we can bring back the cone bra.
For all my Dom wearing friends - because Dr. M likes us in compression for a long time, most of the summer I have worn workout tights that come just below the knee (my version of shorts and a swimsuit) to cover the Dom. While I haven't been laying out in the sun, I have been walking and biking. I just realized that I have a ring around my knees - tan below, not above.
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can't wait...sounds like a good time.
chelle...it is astonishing the number of people who try to give us "advice" what to eat, drink, supplements to take and even how we should feel. They are so ignorant of how much this takes out of us. We just want our lives back and that includes our breasts, stamina, everything like it was before. Deep down we know we will never really achieve that but we will do everything we can to make it happen, and dang it if some of us dont get awful close to it.
My hubby has not said it but I know all this traveling in search of breast had made him weary. He keeps saying..."whatever you want" which is awesome but I know he is tired of it. Yet i also know that he will be there to see me through it.
"friends" do not understand the daily struggle we have. They assume that when you are done with tx you are done and good. Some of my friends have said why didn't you just get implants? They have no idea that they would not have worked and that this is MY choice and I did all the research to make that choice. They cannot understand why we would put ourselves through this over and over....We get it though...We understand it completely. HUGS to you and I hope that you can mend the relationship if you so choose to do so.
Maggie
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Thinking of you today Sharon.
So happy for your good news Zenful, such a relief.
Chelle, that's a bummer about your friend. I always try to give people the benefit of the doubt, so hopefully she was just trying to be helpful in a tough love kind of way and not intentionally trying to be hurtful. I have a number of people in my life that I know love and care for me, but are just awkward in letting me know. With those people, I just have to keep it clear in my head that their actions stem from care and concern and aren't meant to be hurtful, even if the end result is that I'm hurt or I'm not getting the kind of support I need. They really ARE trying to help, they're just going about it all the wrong way. This helps me not be so hurt by their actions. Hopefully this is the case with your friend as well.
Cherrie and Barb, I'm not BRCA+, but I do have a variant of unknown significance. I'm in a gray area and that's what makes this decision so incredibly difficult. Dr. Stolier, Dr. Von Almen, and my local ob/gyn have all said, there is no right or wrong answer here and that no matter what I decide, it would be reasonable. I thought long and hard and decided since my life was potentially at stake, I didn't want to roll the dice. The problem for me is that it's really a roll of the dice either way. I have no issues right now and am not even close to menopause. By removing my ovaries this young, I very well may be creating issues. But, if I don't remove them and it turns out that I am at a higer risk for ovarian cancer and I get it, I could die. I'm still not 100% certain I'm doing the right thing, but I do hope all turns out fine and I can look back and say I did the right thing. I'm just not there yet. The hysterectomy is not prophylactic, I need one for the awful cramping and bleeding I have 3 out of 4 weeks every month, but the oophorectomy is 100% prophylactic....and that's what I'm uncertain about.
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Chelle --
You have my empathy ... it seems to me that there are so many who "don't get it" and never will, even those who have had a diagnosis and chose another path. And, I found that those I thought I could rely on most for unconditional caring and support were the very ones who were impatient, unforgiving and selfish enough to want me to tend to THEIR needs before my own. So, I quickly found out where there was imbalance, and as difficult as it was (and still is), I had to just let to go to concentrate on that which I knew was right for me. Hell, after the 1st surgery, flowers and cards. Second? An e-mail. Third. Nada. I, like you, needed to remove myself from that negativity and second-guessing and going against my giving nature to take where I need it and move forward with what it right!
That is where this forum has been a life-saver. I have found myself late at night, bawling my eyes out reading posts, knowing that organically every woman here "gets" it ... in spades! Some of us were luckier than others with our diagnosis and timing, but, as my cancer surivor daughter put it, "It is ALL cancer, Mom."
It DOES hurt, no doubt about that. Deep and intensely. But there are other discoveries and others who from nowhere seem to be there to support. That has been a true blessing. That and learning that my pride in not wanting to ask for help has no place here just like not accepting the loving help that is offered.
In some ways, we are blessed. We have had a whack upside the head to "PAY ATTENTION" to that which is important, to sort through the mixed bag of junk we have been carrying and adding to all our lives, and to streamline it to that which we can beneficially carry forward to our futures, a healthy and happier one, stronger for this *$@&!)&#)# experience.
PM any time. Post any time. These ladies have gotten me through so much more than I can say and probably, other than here in a post, I will never be able to thank them for all they have done.
So, bring it on girl! My shoulders are pretty broad now ...
Maggie1
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Hi ladies...
Just touching base now that I am home from the summer and kiddos are back in school. I have tried to keep up reading about all of you... there is always so much going on. My Stage 2 is right around the corner and so I'm trying to hunker down and nest a bit and try to get emotionally ready for this next surgery. But honestly, I'm truly dreading it....FYI Audrella... my oopherectomy was pretty piece of cake-ish... and I sought out a good doctor immediately afterwards to deal with my bio-identicals.... which I would highly recommend given your age. I would do a ton of reading and actually have the names of some really good books... PM me if you are looking for that info. I have about 3-4 that are bibles and gave a tremendous amount of reassurance that bioidenticals were ok given my genetic status. My integrative doctor was also very helpful. I would move forward as your heart leads you... and surround yourself with the best, most open minded doctors. Do a lot of research (concerning what to expect post-op) and you will feel a lot more comfortable with your choice.
Chelle, so sorry you are having healing troubles. It never seems to go off without a hitch. My right breast also did not heal well after Stage 1 in May. It sounds similar in size and I also got the "3 week" healing estimate from Laura... I sometimes wonder if that was said just keep me postive but mine definitely took closer to 10 weeks.... and I think that they have been through this enough times to know my wound would need more than 3 weeks... so that bothered me. They did offer to bring me back at some point to do a quick surgery to close it but I ultimately decided on patience knowing they would be revising the scar during Stage 2. It did however take a LOT of patience.... so I pray for that for you.
Going to run but trust me.. I'll be back! I just said that in an Arnold Swartzenagger kind of way in my head.... and yes, I have no idea how to spell his name.
Take care ladies... warm fuzzies to you all!
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and Maggie 1.... what you just wrote is lovely!
I agree and have found that those you expected to be there, just haven't... but also what's surprising... those you never thought in a million years would care... rise up to the challenge and really reach out and touch your heart.
Luckily, we all have had each other here... and that's a really beautiful thing!
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Audrella, I had a hysterectomy two months before my cancer diagnosis. After much research I opted to keep my ovaries. (After all, I was never going to get cancer - ha.) I debated again whether to have ovaries removed at stage 2. For now I'm keeping them until I get the results back from something called the BROCA test. Similar to BRCA, this test will show if I am at higher risk for ovarian cancer. Although, I was negative for BRCA 1 and 2 and I still ended up with two cancers at once - so genetic testing is no guarantee. So many tough choices we have to make! Literally life and death choices. That's what other people don't get and can't understand unless they walk in our shoes.
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Greetings Ladies,
I am thrilled to finally have a date for my DIEP.
Looks like October 2nd with Dr. Sullivan.
So I have followed the boards (here and the DIEP) but failed to take notes, because I tought the day would never arrive.
My specific questions deal with the stay.
I was told to get there Sunday for full day testing Monday, with possible additional testing .tuesday. So I need a place to stay....any recommendations???
Hubby will also have to stay too.
Then my surgery and hospital stay, then Hope Lodge (they book that for me?)
I was told to expect to see Dr. .sullivan Oct 9th with an expectation to go home on the 10th. So after release from Hospital Hope Lodge is free?
Hearing from NOLA...I almost feel like I had to pull teeth to get Liz to get a date for me...and trust me, it wasn't pulling teeth much, but felt like a lot of unnecessary back and forth (over 2 weeks)...however, because of all of you here I have complete faith in NOLA staff. (My NY doctors office still has not gotten back to me in regards to insurance costs...they've had this sucker since June!)
So, I had spoken to Vicki in regards to my expected out of pocket costs , way back in June, do they ever put that in writing? Who should I expect to hear from next, if anyone? Do I just go ahead and book my flights? (Jetblue has great prices that end tomorrow)
As for travel.
There appear to be 2 flights, at a reasonable price.
One is 9:25 am....the other is 6:00pm.
On the one hand would love to get home and get rid of MIL (well not like that, but set her free!) and see the kids . BUT, will I be up to an early morning flight?
If I "take my time leaving" I won't get home til the kids are in bed....which to me - I can wait one more day, I would just tell them I'm coming home Friday, so they don't wait up all night as I wouldn't get home from airport til after 11:00pm.
Thoughts?
And final,
What to pack....I have hit a few thrift stores for larger clothing....not that I have much of it.
Any words of wisdom greatly appreciated!
Trying to take this one step at a time...but I'm a planner and would like to be as prepared as possible.
Thank you!
Pat0 -
After much thought, I am having my ovaries and uterus removed at stage 2b also. I am BRCA negative, but the third of my sisters to get breast cancer. There's obviously a genetic screw loose somewhere!
I just turned 46 and chemo started me towards menopause, but Tamoxifen has kept me there. My doc does not seem to think I will have horrible side effects from the ovaries being removed since these chemicals have already done all the dirty work. I suffer terrible hot flashes, but Effexor is lessening the severity a bit. I've kind of gotten used to it by now, so hopefully it will not get worse.
I'm scheduled for 2b with Dr. D on January 10th. Hoping to get my behind straightened out, some breast revisions AND the ooph/hyst. Dreading another surgery, but at least almost a year will have passed between them. I've needed the break.0 -
Pat,
Congrats on a date.... I personally was on a pursuit to have the shortest stay possible... I was a Monday to Monday kind of gal.... Flew in Monday AM... had tests Monday... surgery Tuesday... with follow-up with Dr. D on following Monday and then caught a flight home same day. I think most gals don't condense it quite like that and it did make it a bit more stressful but for me that's what I wanted.
Personally I like flying early morning... (i prefer even earlier than 9am)... the airport is usually more quiet and peaceful... but that's just me. I would def. book if there are special rates going on.
I packed too much even after the gals told me to pare it down as much as possible... So whatever you pack... take half... lol. A couple pair of stretchy pants, camis, and some cardi's was all I needed.... (and a pair of pj's.) Good luck!
Jennifer
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Hope lodge is free...before and after surgery. Just have to give them earliest and latest date you need...I did it for my replacement gap surgery in March and it was simple. If you want to stay in town to play that is up to you. We stayed at the Marriot on canal...kinda expensive and not that spectacular but close to everything and walked all over downtown.
Airfare is tough....most carriers charge a change fee to you if you have a complication and have to change the return home. Jet blue at least doesn't charge for checked bag. Southwest does NOT charge for any changes and also free cked bags.
Pack light...you do not need too much esp for the hospital part. plus you do not want a bag for you to have to carry at airport. Your hubs will be allowed to stay with you the whole time at St charles...nice little pull down bed and they will feed him well everyday too.
As far as early or late....you know yourself best. I am not a morning person. Never have been. Getting home late will mean not being able to get up early the next day so sounds like a pick your poison on that one
The hospital/doc asked for my agreed upon out of pocket day of testing and not a penny more. Please try not to stress that part as they really do what they say on that end. Best wishes to you in your planning
Maggie
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Thanks Ladies,
How do I get in touch with Hope Lodge?
(And I thought someone from NOLA had told meI had to make my own accommodations prior to surgery and that I could stay there to recuperate...could be chemo brain, or policy change?). If I CAN stay prior to surgery does that mean hubby has to leave when I go in for surgery?
St. Charles...is that the name of the hospital? Hubby can stay there? (See, I'm REALLY new! Lol)
Thanks again,
Pat0 -
Pat, take a deep breath! You're going to make it through this! Back in April I had all the same questions and fears. Hindsight is an amazing thing!
Regarding airport - if you stay at Hope Lodge you will be picked up 2 hours and 15 minutes before your flight so factor that in as you figure it out. For stage 1 I had to extend my stay by a day because they had to go back in to get clean margins. (Dr Gray did that as my general surgeon since I did mastectomy and recon at same time.)
Katie at the center will book Hope Lodge for you if you ask. She will also handle all your rides back and forth. Try to get a room at the lodge with a hospital bed. I didn't have that and it would have helped me a lot. We just figured out that there is a Dot's Diner and a Picadilly Cafeteria about 1/4 mile from the lodge. We made all our meals in the kitchen at the lodge but that would have been easier. People also leave behind lots of free food. No food or drink (other than water) is allowed in the rooms.0 -
Call Katie at the center and she can answer your questions about travel. She is very good. I have made all my airplane reservations, but she handles hotel /hope lodge accommendations and the car service to pick you up from airport and take you to and from your appointments. I stayed at the Hope Lodge after my stage 1 surgery in March and lucked out on getting a room with a bed that raised like a hospital bed. I didn't request it, since I didn't know about them, but I would make sure to request it. Yes your husband can stay with you at the hospital and at the hope lodge.
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You can stay at Hope Lodge before and after. You can keep everything in your room when you are at hospital. It is a ways from things and you may want to rent a car to grocery shop and get out. There is an Enterprise not far from Hope. They will even pick you up. I didn't know that the Lodge had hospital beds, but that would be so helpful.
Don't pack too much. A lived in yoga style pants and am still wearing them 10 months later. I Bought them one size larger than normal and still wear them. they ran small. wish I had bought my same size blouses. I bought big and didn't need to. I was able to lift my Arms. A zipped hoody was a real plus, but I was there in November. At the lodge you can stay in PJ's and robe if you want. I did for a couple of days and then started dressing again. Pack light.
I came in a couple of days early to play. You can leave the day after post op. (usually) Southwest is nice because if you need to make a change they don't charge. I did and Delta nailed me for it.
Ask any questions you need to! That is why we Re all here.0 -
Thanks Ladies,
I will reach out to Katie tomorrow...I have my first day of jury duty and am hoping to get my travel plans hammered out in my "spare time" there.
Jet blue isn't too bad in regards to change fees, I believe $50.
They waived any fees when I told them i was undergoing treatment for chemo and had to cancel going to a reunion I was scheduled for. Just had to give them my doctors name and number. Their first piece of luggage is free on Jet Blue, unlike Delta...and Delta was also more than twice the price of Jet Blue, so they are ruled out. I will check out Southwest next.
Thank you for the rental car info. I will check out some coupons and see what I can do.
Also forgot they had mentioned, way back in June, transport to/from airport. Awesome reminder!
Cherrie, you came early and stayed at Hope lodge for whole visit, or elsewhere?
Was thinking of coming in on .saturday . Liz had said i should fly in for Sunday as she said I have Monday full day of testing. I wanted that little bit of cushion...jet blue only has 2 flights a day.
Ok, will get my notebook out for my notes and questions. Glad for the "down day" tomorrow so I can figure things out.
Thanks again,
Pat0 -
Pat...your health provider must make the "reservation" for you at HOPE and they are so accomodating and welcoming. It really is a nice place to stay and FREE! you can indeed stay before and after surgery. I was stuck at st charles for 12 days in Mar and our reservation was for the whole time. No worries they kept our room...stuff was still there as I only though I would b at hospital for 4 days but hubby went back daily to use their gym and shower and do laundry. So awesome and did I mention FREE. Car would be a good idea...it is a bit out of the way from city. Suppose you could do taxi for groceries...just another preference.
maggie
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I stayed there 3 days before surgery and rented a condo after. Our condo was nice and near the Center, but Hope was nice and I wished I had stayed there the entire time. It was free and like Maggie said there is a huge kitchen, laundry, library, clean, etc.
The cons are: far away (we rented a car), no food or drink in the rooms, no recliner to sleep in, industrialized area,
Pros: free, nice rooms, make your own meals if you want to, clean, TV's, socialization if you want it, WiFi, laundry
Many girls stayed at the Homewood Suites. There is breakfast every morning and a light dinner (but plenty) on M-F.0 -
Pat... I agree with everyone and nothing much to add... But about flights and times, after a stage I surgery, thre is a lot of prep getting ready for the day, with drains etc. I would not have wanted an early flight knowing I'd need to do all my bandages etc. Just my 2 cents.
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