May 2016 Surgeries
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Hello all,
I'm 38 and was diagnosed two months ago with bilateral BC. After pouring over every article and board since my diagnosis, I've avoided this (awesome) site for several weeks since because all of this cancer crap just got to be too much. But I'm back again, at 1AM on a Saturday night, because my old friends Insomnia and Anxiety decided to pay me a visit in honor of my upcoming surgery.
My NSBMX is scheduled for May 10. I also had a nipple/areola "delay" last month, and had a scary incident as I witnessed what appeared to be (but thankfulky wasn't) necrosis of my left nipple (it made it through, thank God). It is taking forever to heal but my PS assures me that everyone heals differently and there's nothing to worry about. I don't believe him. Has anyone here had a delay done? Why the heck won't Lefty heal already?
Am I doing something wrong? Not eating enough pineapple? I'm BRCA2+ with a buffet of cancers on both sides of the family. Also ER/PR+ and peri-menopausal (yes, at 38)...I've dealt with hormone issues for most of my 30s and am dreading the journey's upcoming turn for the worse. My BS was wanting me to consider neoadjuvant chemo but I resisted. I used to be hopeful that I wouldn't need it but now I'm bracing myself for it. I just don't think I'm strong enough....
Speaking of not being strong enough, my BS is wanting to do my NSBMX as an outpatient procedure. I stared at her like she was crazy and lost consciousness for a moment. Then I came to and nearly scratched her eyes out. While I do know that this isn't all that uncommon (outpatient BMXs, not patients scratching out their doc's eyes), I am one of those people who has 1) major issues with recovering from the physical trauma of surgery and its associated pain; and 2) an absolute horrible time coming out of anesthesia (depths of hell is the only way I can describe it). I told her this, and it didn't seem to phase her. All I know is, if they force me out the door before I'm ready, I'm going to have to scratch someone's eyes out.
It varies from hour to hour, but right now, 'm more anxious about what they'll find once they get inside than the actual procedure itself. I have very dense breasts and they suspect there may be more stuff going on than the mammo/MRI revealed. I'm praying that there's no lymph node involvement.
So that's me in an anxious, angry nutshell.
Thank you to you wonderful ladies for sharing your journeys and wisdom here. And, for letting me rant without judgment. Though this all absolutely sucks, I'm so thankful to know I'm not alone in my fear, anger, anxiety.
May 10 can't come soon enough. Best wishes for everyone in their surgeries and recoveries!
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Ella23 - I have moments of anger too in all this, so you're not alone. I've not had nipple-delay, and I'm sorry you've had some trouble there. My BS's having me use heat for a week before and after along with nitro gel to increase circulation. Maybe ask your dr about something like that? Idk.
The hospital I'm at has an overnight policy for mastectomy patients, with two overnights as needed for pain management or complications. I think having it as an outpatient is insane, but I've heard it happens, and I met a woman at a support group who was admitted and discharged after hers all within 12 hours (things went fine for her). I wish you luck. I hope you can hold your own and get to stay as long as you need to wake up properly and stabilize.
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Ella - I have heard of the delay but I don't know of anyone who has had this done. I hope lefty heals for you! As for anesthesia, ask your anesthesiologist if you could have propofol instead of the standard regimen - I awoke after my surgery feeling wonderfully rested and I had heard from others who had propofol that they had the same experience.
GreyKat, I'm so sorry you are going through this at such a young age! I think us "older" gals may have a different perspective because we already bear the scars of life and the magnitude of having cancer may seem somewhat smaller to us than to someone in their 20's or 30's when compared to everything else we have endured. But please don't give up hope! QOL is so much more than just cataloging pain levels and counting the number of surgeries that lay ahead of you! I hope that you can look back on this in a year or 2, or 30, and say "Meh, that wasn't so bad". In any case, I'm sending ((hugs)) and hope you have a peaceful day.
I've been thinking a lot about the word "grace" and what it means. John Denver's song keep running through my head "and he walks in quiet solitude the mountains and the streams, seeking grace in every step he takes". Wishing you all a very happy Mothers Day. -
Hydranne-so good to hear you are doing well! Keep it up:) Hopefully I am saying similar things this time next week.
Ella23-I never heard of being sent home the night of the BMX. I thought just one night in the hospital seemed a little crazy although you can never really get any rest while you are "incarcerated." Make sure who ever is with you is able to go toe-to-toe with your doctor if they try to send you home too soon. You might be too groggy for the eye scratching!
Also I did five months of neoadjuvant chemo. To you and anyone else who *might* be facing it, it was no where near as bad as I had imagined it. The worst parts to me was hairloss (of course) and the length of the treatment period.
There are a million other things one would rather be doing with their time but chemo is very doable if it becomes part of your treatment plan!
Hang in there and good luck on Tuesday!
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BMX with reconstruction May 20.
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Outpatient surgery does not necessarily mean they send you home that day. My UMX in January was outpatient but I was told well beforehand that they would keep me overnight, even without any complications. And to expect to be in for longer if there were complications, like pain that was not easily controlled, or fever, etc. Good idea to check with your BS ahead of time to be prepared.
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GreyKat--are you using the nitro gel right now? I've heard they give epic migraines and I already get pretty bad ones on a regular basis so that's scary to me...curious how it's going for you? And two overnights at your hospital for pain management?? This is EXACTLY why I think my BS is insane for pressuring her patients to go home a few hours after BMXs. If other facilities and doctors recognize the potential need to keep patients for a day or two, WHY is she adamant that I go home so soon? She claims it's because hospitals are germy and going home would reduce risk of infection. Okay, I get that. But when I tell you that it's not that I'm not a crazy girl who wants to stay overnight because I think it's like a fun girl's sleepover, but because I know myself and my history better than you and I know I will NEED to stay, I expect you to hear me, take note, and respect my concerns. Also: how many thousands of women get C-sections in a hospital across this country, every day, and after spending a night or two in these "germy" hospitals get discharged with NO INFECTION? We've had this conversation (argument) 3 times now in the short duration of our relationship and each time, she has written me off like I'm crazy for objecting to immediate discharge. UGH.
(sorry for the rant...we just had a recent tiff so everything's still fresh. deep breaths....)
Grandma3x--thanks for the anesthesia tip! I'll definitely inquire about it. I wish I had kept a record of what types of anesthesia were administered to me during my various surgeries in the past to know which ones to stay away from. Years ago, I got combative with a nurse once while waking up from anesthesia and it took several of them to hold me down. They may or may not have nicknamed me "Scary Spice."
Angtee15--my nails are nice and long and primed for scratching.
If I'm happily and obliviously doped up on meds when the time comes, I fully expect my hubs, who will be with me on surgery day, to go into combat-mode for me. And take pictures of said combat. I should get his nails filed, just in case. -
Question re: pain meds: what did your docs prescribe? I was on norco/vicoden for my delay which worked fine and for BMX they prescribed oxycodone. Did anyone have pain meds that didn't work for them? I realize this question is a bit premature for most, but throwing it out there anyway.
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I was given Norco for my BMX on Friday. I can take 1-2 tabs every 4 hours. It seems to be working for me
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Ella - I had a prescription for oxycodone after my first MX but asked them to prescribe Tramadol instead. I did fine with that and switched to Tylenol and ibuprofen after a couple of days (taking the tramadol only at night). Tramadol is supposed to be a mood enhancer as well as pain killer and I think that may be why I felt so good after my first surgery.
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Ella23 - No nitrogel before, that comes right after. And yes, it causes terrible headaches as well as blood pressure drops (kind of like the nitro pills for heart attack risk people) so I've been warned to apply it with swabs (not fingers) and sitting down and probably at night. They just said I'll get headaches and to just suck it up and deal. I already get migraines, so I hear you on that. I just expect to suck it up and suffer through. I'm calling it "hell week" for a reason.
And I also understand going three rounds with the surgeon. I've got one last battle before surgery tomorrow morning because i just didn't have enough time with my BS to cover everything I needed discussed. She was the bouncy kind who popped in the exam room, peppily rattled off her facts, drew on me with a marker, said "are we all good?" and bounced back out to let her nurse cover all the instructions. *sigh* They charge insurance nearly $600 every time I see her for 10 minutes, tops, so I wish I could have had more time to talk this over. I am stressing about what I expect will turn into a confrontation since she hasn't really listened to me all along. At least she's likable and big on staying in the hospital as long as it takes and such, so other than this one issue I like her fine. I can't imagine how angry I would be to be in your shoes.
Grandma3X - Thank you for your kinds words. Thank you ALL for your support. I don't know how I could have gotten through my last week without this thread. I just don't have anyone to talk to around here - talking about cancer and all the surgeries I have to have with people my age gets me two responses: the "My 65 year old neighbor had that and it was no big deal. Hey, you get a new set as big as you want!!" or the route my best friend took, which was to utterly disappear on me because she can't deal. I understand but it still hurts. OH - or response #3 - they spend a lot of time telling me exactly how I'm supposed to feel about this and how my actual feelings are wrong. Which is infuriating.
You all rock. You all have helped carry me through to tomorrow morning's terror.
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Glad to hear from the girls who just had surgery doing well.
GreyKat .. will be thinking of you tomorrow. Hugs.
Suz .. reading your post-op news gives me hope I will hear those words "they were clear".
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Robinlori - good luck tomorrow with your surgery. We're surgery sisters, I think.
And to those ladies on the 11 & 12th, since i'll be all doped up and sleeping -
good luck JoJo, WifeMom, Kluga, Angtee, tsoebbin, Ravin, blessed & Bonnie!
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Ella23, is it to late to find another BS? I wouldn't allow any doctor to blow me off like that. I know getting the right BS can be a bit tidious but if the BS doesn't want to hear of it do you have the right to "fire" her/him? My PS and BS say it could be up to 5 days depending on how everything goes. My blood pressure drops considerably after any major surgery so I'm sure I will be pushing the 5 day mark. I won't know how it goes if my insurance won't approve my procedures. At this point I just think they are being major kinks in the water hose!
Wishig everyone with surgeries this week uneventful procedures and fast healing. Is there a Prayer List forum here?
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Wow GreyKat! I'd go out the door after her with my DH right on my heels... My BS has been wonderful so far. Her office staff keeps checking in with me on any word from my insurance yet? Dr Heidt has gone over everything with me at both of my appts with her. When she made a change from doing a left BMX to DBMX she explained in great detail as to why. She's never in a hurry and spends 20 to 30 mins with me. I think I have a girl crush!
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Thinking about you GreyCat, believe me your job is almost done, tomorrow it will be the doctors and nurses turn and your family`s after and you will be more at peace. Wishing you a restful night.
Robinlori, much luck tomorrow too.
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Hi everyone!
Thank you all for the thoughts, prayers and well-wishes!
MonicaM-I am SO very sorry for the loss of your good friend. Big hug and prayers. And lmao re: The bra caused your cancer! I'm sure mine did, too! The bastards! 😀
Glad you all are doing well! (Wildflower, Midwest, Hydranne,Ausbear,Tennispink).
I'm sorry I have been such a slacker on the update! My BMX with tissue expander placement was May 5th. I just had to report that the pain level was still high and they gave me dilaudid every 3 hours, which really helped but I was not able to sleep well because of the pain until the meds were given. Was sent home the exit day on Oxycodone which has worked well in between Tylenol and Ibuprofen. The hours between needing meds are getting longer. The worst thing is the discomfort of the drains. And the camisole I bought with pockets inside for them has Velcro that ends up irritating my skin somewhere. Tomorrow I am going to try the fanny pack idea for the drains. The worst pain is when I have slept 8 hours straight without meds and wake up to all of that soreness and when I accidentally flex my underarm muscle where he removed lymph nodes.
GreyKat-DEFINITELY the anxiety for the surgery was WAY worse than the surgery itself or recovery so far! I look down and pout when I see my area of plains where the boobs used to be but I don't cry. I think, I am alive and I almost didn't make it to this Mother's Day. This is helping me have many more of them. I have the best feeling of relief that it is over!
I am spoiled by my husband who does all of my drains. He helps me get out of the recliner (which is set to recline because it is not electronic) but I can get into it by myself. The trick: using the legs and gravity of your body to lean where you want to go and NOT using your arms or upper body.
I was still asleep when the surgeons came in after the surgery to update my husband, so all I know is it went well, went smoothly, and BS removed a few lymph nodes on the right but saw no cancer so I guess he didn't remove anymore.
The recliner is the best thing! My husband installed a new shower head that is removable so it will be so easy to have a bath/shower, but am waiting on the shower chair we ordered on Amazon! Walking up and down the stairs is not horrible. The biggest challenge is getting up from a reclining position.
My prayers are with everyone, especially GreyKat and robinlori for tomorrow!
Much love,
Georgia 💛❤️
P.s. Raven-LOL re: naming the drains! LOVE that idea! Number 4 has always been a weird one. It will be so fun to name them!😀
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Drain Names Revisited Because I Can't Sleep
Bonnie & Clyde, Frankie & Johnny, Tippecanoe & Tyler Too
Hootie & The Blowfish, Jafar & Iago, Gladys Knight & The Pips
Bugs Bunny & Elmer Fudd, Ren & Stimpy, Pinky & The Brain
Voltaire & Catherine the Great, Descartes & Kant, Freud & Jung
Lucy & Ethel, Romy & Michelle, Tweety & Sylvester
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We all get extra credit in the Konmari competition for losing our breasts, right? #tidyupallthethings
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Grandma and Sensitive, thanks for the responses.
GreyKat, wishing you minimal pain/headaches tomorrow. Sorry to hear about how inaccessible your BS is--that stinks. I'd be going crazy if I had a list of questions and only 10 minutes for each appt...especially with a BMX approaching! Hope you're able to put your confidence in her and have peace as you prepare for tomorrow. Lots of love.
WenchLori, I had appts with three surgeons and chose my current BS mainly because I had the most faith in her ability. I know I could go with another option but at this point, I don't think that would be best for me. So I'm just trying to get through this "disagreement." She is not a bad doc; she's actually very accessible and pretty accommodating in general...it's just this one sticking point that we have. How wonderful that you have what sounds like an all-around awesome BS!
So I've been trying to fatten myself up because, in my head, I think it will increase my chances of getting negative margins, as one of my tumors is very close to the surface of my breast (more fat = more cushion...right?). Is this ridiculous? Oh, well. in any event, I'm rather enjoying eating whatever I want "for my own good."
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Ella - I am confidant in my BS's ability. It's the part where I have to make a fuss about how some of the things in the consent forms violate my beliefs and need to be accommodated that I dread. I've seen her twice - the first time we met, and the pre-op. She's good. She's just bouncy. Bounce in, bounce around, bounce out! Her nurse is super helpful and the main one I've gotten to talk with.
Am I the only person who didn't get to pick her surgeons? They were both assigned to me by clinic staff with no input from me. I felt the BS would do a good job and that was enough, and I didn't like the PS - but by the time we had our first meeting someone in his office had already put through the operation approval to insurance (!fast!!) and insurance denied me the ability to change surgeons. So that was that.
Oh well. Too late now!
I'm off to take my "special pre-op soap" disinfectant shower. Honestly, denial set in yesterday and I can't shake it. This isn't real, it isn't happening, today is just another day with stinky soap for some reason. I am scared of a lot of things - the operation itself, and that moment where I wake up and think "this was a horrible permanent mistake". Future me is going to benefit from this, I hope. I'm going to be so, so angry if I get through all this and some rogue other cancer pops up in the meantime to take me out, you know? What a waste of a pair of breasts that would be.
Ok, chin up, and off we go. Thanks so much ladies! Hugs to all and why do I feel like I'm walking to an execution? Ugh.
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GreyKat and robinlori - sending good surgery mojo your way!
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GreyKat and robinlori, thinking about you both today and sending you all the good wishes I can muster. And best wishes to the rest of us having procedures this week as well.
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So, I had a "come to Jesus" moment yesterday over my upcoming nipple excision. I spent some time looking at pictures of reconstructions without nipples and many of them were not as bad as I thought they would be. Of course, some of them had these awful, angry scars so the best I can hope for is that my PS is as good as he thinks he is and I don't end up with these huge disfiguring gashes in the middle of my new foobs. .And even if I do, I'm starting to embrace the concept of maybe getting some kind of flowery, colorful tattoo - and if you knew what a departure that is from my personality it would make your head spin! My DH is just shaking his head - first blue hair and now possible tattoos? It's like upside-down world at my house these days! My 88-year-old mom has always regretted not getting a tattoo - maybe I'll take her in with me when I go!
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GreyKat, I didn't pick my surgeons my primary care doctor did that for me. My insurance did say I can get a second opion and go with the doctor I felt was best for me. I didn't have to go any further with my PS or BS, I'm happy with both! I wish my insurance was a little quicker on the approval for both surgeons!
I'm still impatenty waiting!
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I have a tentative surgery date of June 15, 2016. If someone cancels and both BS and PS are open they will move me up. At least now I'm waiting for the actual surgery date
That's what I get for having the best surgeons in Bloomington IN work on me. I hope I'm not dissapointed with the results! Good luck and best wishes to all having procedures this week! I'll be think of you and sending prayers your way!!
Lord please hold all BC Sisters undergoing procedures today in the palms of Your healing hands and bless all surgeon's hands as they restore health and a chance for a longer more fulfilling life. Amen
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Hi all - Thinking of all of your surgery girls this am. Praying for your comfort for sure. I took the weekend off from all things cancer and it was good since next weekend it will be in everyone's face (family coming to town to stare at me and celebrate son's graduation later that week). Had some angry moments that came over me - I get paranoid that I'm super hormonal which then makes me paranoid that I'm feeding the little b*%&$# tumor and realize that I have internalized all of my stress in the illusion of "being so strong." I'm jealous of you girls that are over the surgery hump. Thank you so so so much for sharing your experiences and details - it really helps. You prophylactic girls really do have a whole extra set of emotions - things have been kind of decided for you and that super sucks. I'm stubborn and independent and I hate that cancer is being the boss of me right now - we are the same in those feelings. But I am proud of you girls because you are choosing life (and I don't mean that in a political issue kinda way - I mean that in a you are choosing your life kinda way). Both of my folk had cancers so when I was told I had to have a biopsy I just knew it'd be cancer - because my 2 sisters have been negative so far so I felt like I took one for the team. I don't go for my hereditary cancer meeting until July - that's the first available. Apparently there has been a Groupon for all things cancer related in my area since appointments are hard to get. I have my "chemo class" today - they don't let you start unless you have attended the class. I call BS on that but I'm eager to see what the snack situation is and if we get private areas or if it's like a bullpen where we all get to stare at each other and discuss what crimes we committed. Pretty sure they'll make me stay after and clap out the erasers for being a smart-ass but it's all I've got. Again - sending hugs and prayers to everyone this week. Thank you all for being you. xoxo
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Hello All
Sending good surgery outcomes and thoughts to all having surgerie this week. Thanks so much for the updates.
greykat, heres one: frick and frack. popeye and olive oil.. starsky and hutch
val
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Hello all - I am a surgical frequent flyer and don't usually post in the surgery threads because I don't want to scare newbies - but I am having surgery on 5/17, which will be an exchange of left expander to implant, a swap and downsize of right existing reconstruction (silicone implant), removal of the right nipple (I had bi-lat skin and nipple sparing mastectomies in 2010) to accommodate the downsize, removal of my chemo port through separate incision, and a bunch of fat grafting. I have read all of the pages of this thread and decided to post here so that if any of you had questions that I could answer, I am here to help.
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Hi, Specialk - welcome to the board. I'm SO looking forward to my eventual swap out from expanders to implants. Please let us know how it goes for you - wishing you luck!
Some random post-op musings/tales from the other side for those of you going through the BMX recently or very soon: at 3 weeks post-op I can now pull on an actual non-button-down blouse as long as it's not too tight and a little roomy. It's a huge confidence booster - it's tough to look fashionable in blouse-y button downs! Also, I really turned a corner at the end of last week as far as my energy levels are concerned. I got a good solid 9 hours sleep around Wednesday or Thursday of last week and ever since I feel like I don't need to take a nap after every. single. thing. I. do. The downside is that, now that I'm feeling better, I'm getting kind of stir crazy - want to exercise so badly I can taste it! And let's not even talk about intimate relations.......I miss my husband!
Things get better every day! Hang in there girls; we'll all get through this together.
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