December 2014 Surgery Sisters

jbdayton · December 2014

The flap surgeries are very doable. It can result in several surgeries if you have complications. I know some who did the flap in one surgery and very little tweaking and nipples in a second surgery. Flaps are great for feeling warm and looking like real breasts as far as they bounce with you and age with you as well.

I just wanted you to know anything is possible. If you encounter complications, you can still get the same final results but it may take a little longer and a few more procedures.

I definitely did not want to scare anyone away. The majority of people have one flap surgery and one or two revisions only.

I don't know if there will be time to squeeze in the nipples this year. I saw my hand doctor yesterday and he said I could not put off my carpel tunnel surgery any longer. I will do my right hand on Dec 19 and my left hand on Dec 29. The hands hurt horribly at night so the relief will be welcome.

twolumps · December 2014

Hi, y'all. I had my Bmx on Tuesday morning as planned and got to go home yesterday as planned. I have to say for a major surgery, this hasn't been bad at all and the drains have not been terribly inconvenient, either. The only real pain I've had (unless I tried to reach for something) has been from the forced core workouts I've had just trying to get around without using my arms. And those inner thigh workouts.

I've pretty much been home alone, except for the yellow lab and old orange kittaeh, knmtwins. I even stripped my own drains this morning. I am feeling quite accomplished.

I came out of surgery with a very pretty pink floral tube top (when was the last time I was in a tubetop? Oh, wait, that would be NEVER!) and the Joan Katz breast center lady came to show me how to do my drains and drop off an industrial strength camisole (think your grandmother's longline bra) which has two pockets for my four drains. They're kind of in an unwieldy location, but I'm not going anywhere right now anyway.

I get to take a shower tomorrow! Yay!

Hope everybody's surgery is as uneventful as mine and they get the same wonderful news. I don't know how many nodes were removed, but the preliminary report is that there is NO cancer in the NODES. Double yay!

Y'all have a good day and I'll catch up with you later.

sandra4611 · December 2014

Hi December sisters. I know many of you already from other threads on BC.org and look forward to reading all the stories of my new sisters here. Yesterday I saw my I saw my plastic surgeon for a two month check-up after my October surgery. He was so pleased that he gave me an early Christmas present - I now have a date for my final (#6) surgery and it's coming up fast! I'm "on" for December 19th. This surgery will be to finish reconstruction now that it's apparent that surgery #5 was a success. The infection I acquired in the hospital after the BMX with Direct to Permanent Implants (Aug 2013) caused a loss of parts of three muscles on my side, chest and the front of my left shoulder. Most of the soft tissue on my left side was lost including 1/3rd of the way up the side of the left implant, so it had to go as well. I've had surgery to repair the muscles but they are short and don't work like they used to. Let's just say they "don't play well with others." My altered anatomy has pushed and pulled in the wrong ways, irritating already unhappy nerves and muscles and causing pain everywhere. The implants on both sides migrated due to the upheaval around them in spite of several attempts by the PS to keep them in place.

The October surgery was the last ditch effort to get control without abandoning the ship and moving on to a Lat Dorsi flap procedure. The left side skin was paper thin and had been through too many surgeries to survive another one. The PS dissected the pockets again, starting from scratch and grafting AlloDerm everywhere. Two months of holding my breath has paid off. My PS declared victory and said we can move on with the final stage. Fat grafting will cover "skin over bone" areas on my left side as well as divots and low-water crossing areas on my chest which are left over from the BMX. Yeah! I never thought I'd get a December surgery date and figured this would drag on several more months.

Those of you whose journey seems like it will never end - hang in there. You will get to the end even if you end up with some scenic detours along the way.

jbdayton · December 2014

Oh Sandra that is great news. I am so excited for you. This has been a long and winding road.

I should be having my last revision on Monday and you the following week on Friday. I will keep you in my prayers. I will be doing carpel tunnel surgery on the 19th.

My PS is still hoping to do nipples between Christmas and New Year if everything works perfect. But he does not know about my two hand surgeries that have been inserted into this month. The hands are hurting all the time now splints or no splints so, I can't put the hands off. My hand surgeon is off the month of January.

Either way, we are both getting our final revisions in 2014!!! Congratulations on a date I know how happy you are. Never give up faith.

knmtwins · December 2014

ladies - a quick check in.. For those new, Welcome and when I hurt a little less, I'll add you,

Quick what I learned… Your bodily fluids will be blue if you get the blue dye. Scarred my husband to death that I was vomitting blue.

Tell everyone you want 'your' person in recovery with you, seeing a loved one is comforting.

Have someone spend the night with you. If my husband hadn't been there to unplug the leg wrap pump thing and get me to the potty, I would have wet the bed.

At 3am I was cursing myself for not doing a lumectomy. At 5am, I knew there was NO WAY I'd be capable of going home, at 7 I started walking the halls, around noon they said i looked GREAT and to go home. Getting in and out of bed and using the comode were the hardest, but I could wipe myself the 2nd time.

I loved my pouch cami that I concocted, the nurses thought it was great too, but I have improved upon it. I have added a mens tank top under it. My drains are coming out of 3 holes under my arms, on each side,so the tubing was making me itch. HUMMMM…. I had a man's tank undershirt. Cut the sideseam to go down to where they are slightly below the tubes. Put on Tank, thread drains through, put on pouch cami, thread drains into pouch! To strip, take out of pouch, but keep tank top on.

bring sleep mask and ear plug!!!!!!!

twolumps - you are a warrior! I still feel bad, maybe because the surgery was 7 hours, as the ps had to do a reduction to the skin also. I'm doped up in vicodin, flexeril and valium.

I'll be back with more info later, when I'm feeling better.e

Bippy625 · December 2014

knm, recover and take care! You are my inspiration. Love the hourly updates! I am doing delayed recon so hope less pain for me, it is just chop chop.

Good tips, appreciate them all. Go rest up and write us again soon

Chloesmom · December 2014

Thanks for instruction on cami! I just cut the shelf bra out of one I had and made a pouch like your example!

The one I used was reversible so it had the kind of shelf bra that goes all the way around. Cut it off with nail scissors and sewed up the raw edges to make a nice pocket. Nice and soft!

AJ62 · December 2014

Hello everyone!

I am having my mastectomy of my left breast on Dec. 17th.

I will read through everyone's posts. Looks like a lot of you have given awesome advice!

Thanks in advance for it!

Hugs everyone!

twolumps · December 2014

Hi, y'all. I just thought I'd throw in a couple of thoughts while the surgery is still relatively fresh on my mind:

I read all the lists on the discussion boards and I have to say that I think I could have gotten away with taking a much shorter list. The essentials were my c-pap, earplugs, a face mask, my phone and a charger, and a clean pair of panties, my toothbrush and toothpaste. The hospital is only about 30minutes from where I live, so that might make a difference on how much gear you have to take, but since I only stayed one night and did not have reconstruction there was no need for a change of clothes.

I was fortunate enough to have the Joan Katz breast center supply a couple of perfectly shaped pillows for each side and, of course, that cami I mentioned before.

I have to admit that I was highly disappointed by the way my chest looked after surgery. It was not nearly as flat on either side as I'd hoped for and pictured in my head. Thankfully, I had been prepared for the fact that the incisions themselves were closed from the inside so there were no ugly black stitches or staples. That was a real plus to me. I knew losing my breast would require a transition,but having incisions which were not hideous helped soften that transition process.

Now for the disappointing part: I have extra skin and fat left dangling around where the bottom edge of where my breasts would be. I don't know if this is part of "skin sparing" I've read about which will aid in the reconstruction in March or if it just as a result of being obese and doc can't take everything after all.

I had kind of been on the fence about the reconstruction and seriously begun to consider going flat for good. The way my chest looks now has really made that a moot point. I'm really not terribly vain and I think I could handled a flat chest for good, but this is not a good look for me. Maybe it's part of the transition and one day I'll come to accept it, but as of now, I'll be having that reconstruction in March as scheduled.

Another weird thing I've noticed: some days I have almost complete range of motion with myarms and then the very next day, I can't do what I did the day before, but I can do things I couldn't do the day before. Weird. There seems to be no pattern. Just nerve regeneration, maybe?

I've been struck by "the claw" a couple of times when I reached too far or just turned my body a certain way. That was no fun, but only lasted a few seconds and there didn't seem to be any residual pain after the initial burn let up.

Anyhow, I still say this recovery has not been terrible. A little inconvenient and frustrating, maybe, but not terribly painful. It's tough to stand there and look at a sink full of silverware, knowing it would take no more than two minutes for you to rinse them, but also knowing you're not supposed to do that.

Those are my experiences so far. Really looking forward to washing my own hair.

katcar0001 · December 2014

Good morning, I could not sleep in this morning due to the terrible itching and sleeping on one side, which is getting really old.

I went ahead and got the unilateral mastectomy on Thursday--could not spare skin or nipple so I am a flat sister for now. In about 6 months, will get TE on the left, implant and the right and then exchange for permanent implant on the left.

My surgical team in Mexico was exceptional. As my friend put it--MD Anderson care with more humanity and compassion and Mexico prices (although I do have insurance). My afternoon and night nurses were wonderful; the morning nurse I wanted to send her packing back to school, lol.

I also over-packed my bag. The hospital gave me a big bag after I checked in with everything you could imagine, except a cami. The only thing I really needed of my own was my brush, clean undies, earplugs, Prunelax and phone/charger. I am wrapped like a mummy in ace bandages with thick padding and gauze between it and the bandage. I gather there are surgical strips underneath the bandage as well. My two sentinal nodes were clear, so I have only one drain, and I am using a lanyard to keep it from dropping off into the abyss (ouch). The itching around the drain site could drive me mad. I haven't found a solution for that yet, and I am going to have it in for two weeks .

I went home about noon the day after surgery. I have not had much pain except for the first evening and take Tylenol when I feel discomfort. The Ketorolac they were giving me in the hospital shredded my stomach, even by IV, so had to get off that. They don't give you the "good" drugs in Mexico, although I could have Tramadol if I wanted it. The IV was the biggest issue for me. For some reason, my line clogged at 2am, and they tried everything to get it running again and finally took it out since I was not in that much pain. I wonder if the clogging is because I took vitamin K a week before surgery to cut down on bleeding. I certainly have not had that much fluid in my drain--about 25-30 in the morning and again at night. I empty it twice a day.

I won't get the pathology results for a week or so yet. My tumor was completely free-floating, not attached to anything, so that was interesting. I guess this is characteristic of a low grade, tubular carcinoma? Too bad it was so close to the nipple or I could have done a more conservative approach. At this point, it looks unlikely I'll have to do chemo or rads, but won't know for sure until after the results. I feel certain I'll have to go on some hormone therapy.

I am going to try to attempt to wash my hair today with some help. I really like the cami with pocket idea and may try to rig one today as well.

Cheers everyone. I hope everyone's surgery is a success.

twolumps · December 2014

I am right there with you on the itching, kat. It got so intense last night I just took 50mg of Benadryl. Whew! It was that miserable. Since I am not taking hardly anything for pain there was no conflict or drug interaction. Out of all the stuff I've read on this website "itching" didn't cross my mind. Maybe I figured that was "minor"in the grand scheme of things? All I know for sure is that the itching is only "minor" if it's happening to somebody else. LOL.

I have to say that I got the best nursing care I've ever had during this mastectomy business. They were all RNs and all very compassionate people, eager to make me as comfortable and well informed as possible. I'm not sure if we're allowed to name names on this website, but it is a large private hospital in Fort Worth with many branches in the area. Best care anywhere.

I finally had to ask them if my doctor left orders for any pain med lighter than morphine. Taking morphine for my pain was a lot like trying to kill a fly with a hammer.

Hope all goes just the way you want it to, kat. I'll be thinking about you

katcar0001 · December 2014

I think I will try Benadryl tonight if I have another itch attack--thanks for the suggestion, twolumps. It does seem to come on more at night.

Today, I am more sore, esp. at the site of the drainage tube, but I don't see any redness or anything like that. Is this normal? I am what? 3 days out now? I need so use someone's suggestion of pretending like my arm is broken and not using it so much. I am not good at sitting still, and I probably would have washed that silverware ;-). I have been sweeping, which I know is not good. I think I will also switch to the other side of the bed as I have been reaching for things with the "bad" side. I don't see how you BMXrs do it. I guess that morphine helps! I wish I had something a little stronger, but perhaps not so strong as you eloquently described it.

Twolumps, try not to worry too much about how things look right now. I know that is hard, but things will continue to settle for some time. That extra tissue will come in handy should you go through with reconstruction. And you can still decide to go flat. My friend had some scar and skin revision, and it was not a big deal. I wish my surgeon would have done a skin sparing procedure, but he did not for various reasons. I have been flat chested all my life and am looking forward to a little more curve there. I hope that I do well with the TEs. It seems weird to me to look forward to something positive with this disease. Everything has happened so quickly.

Keep me posted on how you're doing.

revup-65 · December 2014

Hello ladies, haven't posted much but have been following all of you daily. I was told this week that my surgery would not be until Jan 7th, I wanted to cry, so disappointed. I had Breast MRI and Bone scan this week, really stressed me out. It is great seeing all of you doing so well, except for the itching!
twolumps I have read other posts were ladies had the same issue as you with the extra skin. From what I read that can be taken care of even if you deciede not to have reconstruction, so hang in there, sending lots of positive thoughts your way.

Bippy625 · December 2014

had a dream last night and I was gettin Surgery in a Mall KIOSK! WTF? Also, my PS was distracted by her home life and left me on the frickin frackin table with deflated boobzillas. Huh? The whole thing was just a feeling of bored annoyance for me, not terror. And my PS in the dream looked like Felicity Huffman, which the real one does not resemble! I am startin to wonder bout myself.

katcar0001 · December 2014

Omigosh, this made me laugh. Your subconscious has a wry sense of humor.

katcar0001 · December 2014

Revup-65, I am sorry about the delay with your surgery date. I would feel stressed out as well. I hope that you can distract yourself over the holidays. I cried when I had the bone scan. I kept remembering my poor mother, who died of cancer (not breast) at age 34. It really freaked me out. I probably need a MRI of my other breast but think I'll put that off until after the new year. I am sorry for all you are going through.

Chloesmom · December 2014

Bippy it must have been a night for crazy dreams. I dreamt that the doctor got me mixed up with someone who wanted skin/nipple sparing surgery. I was crying and said "I told you FLAT!" now you have to put me out again! ".

Woke up with my heart racing Was upset for the lady in my dreams who lost her nipples in my place too. Maybe I should write on them with a magic marker so when I'm asleep they do what I want

pinkninja9560 · December 2014

I'm laughing at all your dreams! I'm going for the bmx on Wednesday do I really appreciate all of you for sharing tips and ideas

revup-65 · December 2014

katcar0001 thank you for your kind words. It is difficult isn't it, I know how you feel, I shook so bad I didn't know if I could get on the table, both times. I will be thinking about you.

quiggy · December 2014

left breast lumpectomy and node 12/2/14. Took more tissue then planned and first shower was a tear filled event. Now have a great shaped DD on the right and a misshapen "b" on my left. Thought I was prepared, I wasn't.

Follow up with surgeon on 10th. Currently no idea what to expect for reconstruction.

How long does the physical pain last?

Suggestions for how to hide the huge difference when I head to work?

Chloesmom · December 2014

Hi quiggy. So sorry you are going through this. Have you been to a shop that sells prosthetics yet? The sweet lady at the one near me showed me foam fillers that were sculpted to replace the missing tissue. The one she showed me was kind of like a slice of cantaloupe that was 1/2 eaten. It fits in the bra and fills in the space. Best wishes on your recovery.

I am counting the hours till Friday to get rid of this tumor.

jbdayton · December 2014

I am on my way to the hospital for revision #2. Praying this will be last one before nipples.

Blessings to everyone else still recovering and those preparing for surgery.

I will update when possible.

quiggy · December 2014

Cloesmom, good luck with your 12/12 surgery. I'll be sending positive thoughts your way and hoping for a quick, successful surgery and minimal pain.

Thanks for your message.

quiggy · December 2014

Jbdayton.. sending all my love and best wishes for a successful surgery. I'll keep you in my thoughts.

knmtwins · December 2014

Quick update...6 days after surgery. Bring a sleep mask and ear plugs. Bring someone to sleep in the room with you. They will have been dripping massive fluds into you and you will need to pee, but you will need assistance getting into and out of bed. If no one can come, make sure they do something so you have the call nurse button. Small bottel of water, I couldn't hold my 24oz, it was too heavy, the nurse then brought me a 16iz Styrofoam, still too heavy, finally settled on a coffee cup size with a bendy top. Ask for 3 or 4 at a time, so you will have them. I couldn't reach mine, as I was in too much pain to move. Warn others, the blue die turns things blue, so vomit, urine, etc will have a blue green tint to it. Make sure they train whoever will be stripping your drains, nurse can do 1st 3, then whoever will be doing it at home,can do it and the nurse can give them pointers. I'm sure there is more, but I'm wonky from Rx's so going back to bed. GooD LUCK LADIES! When I'm less dopey ,I'll add the new people.

twolumps · December 2014

Hi, y'all.

Quiggy, so sorry things did not turn out as you expected. That's rotten. At least there are terrific resources today. I think chloesmom is probably right about finding a prosthetic perfectly for you. You will be on my mind in the coming days.

I had a Bmx on 12/2/14. Honestly I didn't have much pain unless I reached or twisted too far. I finally asked the nurses if my doc had left orders for anything milder and the brought me hydrocodone. Kind of like swatting a fly with a mallet. But everybody is different. I've been telling people for years that I'm a mean old cow.😉

Got my final path report back today and it only reinforced my decision for a Bmx. Evidently I also had LCIS in my right breast to go along with the cancer in my left breast, but not any more! Doc says I'll still probably only have to have hormone treatment. Yay!

Now, I just need to work harder on getting those drains out. So it seems like I've been "doing too much". Sheesh, if I'm any more sedentary, I'll be comatose. Maybe that's what those pain meds were really al about: keeping me snowed under lol.

I'll be checking back later. I'm sure typing is frowned upon, but the silverware in the sink mocks me when I walk by...

Chloesmom · December 2014

What kind of cami is the best? I made a pocket one out of an old regular cami but my coworker who had a BMX said she felt best when there was compression on her chest so she wrapped herself in stretchy fabric like a big ace wrap.

Any suggestions for what to buy or not to buy as I think my insurance pays for some of one.

Thanks!

jbdayton · December 2014

Thanks for the prayers. It appears everything went well. I am at home in my recliner. No real pain as of now. ,hubby is fixing me some soup. I am in lots of compression this time. Knees to upper chest.

Another surgery after our healing issues is a challenge mentally. I am thinking positive thoughts, after my gallbladder got removed my September Phase 2 went without a hitch. Incisions healed beautifully, my gallbladder was harboring a ton of infection my systems was trying to fix.

Love and hugs to all, will follow with details later.

quiggy · December 2014

Jbdayton & all sister's of surgery; wishing you all no pain, quick results and a speedy return to your lives.

katcar0001 · December 2014

I second quiggy's sentiments. A word of caution? I had very little pain the first two days, but by the night of day 3 and all of day 4, I was in a lot more pain. I think because I overdid it instead of staying in bed, and maybe just a delayed response on my part. And I didn't get "good" meds. So, I just wanted to tell you to please take this time to rest and take care of yourself. If you live alone, do not be afraid to ask friends and family for help. Your loved ones feel at a loss, and they want to help in some tangible way--let them. I have people volunteering to bring me food, groceries, movies, books, give me rides to the doctor, do housekeeping, feed the animals and just keep me company. This is not the time to be independent, although I know many of us are strong, able women. I wish all of you a speedy recovery.

December 2014 Surgery Sisters

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