August 2013 Surgeries

I have another drain question. I got one drain out 9 days ago and it drained a bit of yellow stuff for a day and then has been dry. Last night it bled a bit and then really soaked a dressing (and my nightgown) with yellow gunk. I saw the nurse navigator today and she didn't seem concerned. It seemed odd to me to have that much stuff suddenly come out over a week later. I am on antibiotics because it got infected as soon as it was out and hope to take them a bit longer just in case.  My question is has anyone else experienced this?

The nurse also didn't seem concerned that my other drain is down to 30cc a day and is still bright red.  I wish there was a "typical" response with these damn drains. I am exhausted worrying about them.

Thanks Lisa, I will look for Blood Builder,

I think the nurse navigator was just too busy yesterday to completely answer my questions and I intend to follow up with her today. Our health care system works really well but my experience started off wrong because of a positional drain and I just seemed to have bad luck all around.  When I read about other experiences here though I am not bad off.  I think I got in the habit of whining about things because of feeling overwhelmed. My goal today is to notice the good stuff. :-)

Jo6202 - you may also want to try Blood Builder.  I have to admit I thought it was a long shot until I had it with constantly being told "you are anemic again" that I finally broke down and tried it.  It causes absolutely no upset to the stomach.  And brings my blood counts back to where they should be.  Win-Win!!!

Wrenn - i took my own advice about Blood Builder and pulled mine out of the cabinet and took one this morning.  Hoping it helps w/this terrible fatigue I'm having (which may be from doing too much or could be from being anemic again).  Who knows?  But it can't hurt.  But certainly hoping it helps!

Wrenn, I hope you get answers to your questions soon, and that your issues get resolved.  You must be exhausted with your hemoglobin so low.

Lisa, I'll be able to give you an idea next week what the chemo exhaustion level is.  I begin next Friday.  5 days until head shaving...7 days until chemo...yikes!  I am wanting to get started though because the sooner I begin, the sooner I finish.  If I make my counts each session, I will finish in 112 days...not that I am counting.

Lisa

I  started my chemo exactly 3 weeks after my UMX last year  FYI-that was the only way my BS would agree to do the UMX before the chemo.  While I did feel tired, it wasn't that bad.  I slept the weekend of the chemo-I had my treatments Friday afternoons.  I am actually more tired now.  I guess that's because it's been such a crazy year-UMX, chemo, radiation, PMX and recon.   This surgery took more than double the time of last years-so that could account for some of the fatigue.  I haven't had a chance for rest-I just have to keep moving forward all the time.  One treatment down, another one to go!!!!Plus, I am a year older!!!!  

kbee-

I'm like you.  I had count downs for each treatment-it really helped me get through it all.  I hope you don't find chemo to be difficult.  I'm in your corner all the way.  After your first treatment  you'll find your own rhythm.  Remember to let the MO know of any hiccups along the way-they always seem to have something for anything that comes up.  There is no reason to suffer in this day and age!

Wrenn

Rest up and get  strong before your chemo.

Everyone-Have a great weekend! 

Freak out experience:



Last night before bed I was doing the massage therapy. You know how I had mentioned the huge 4cm lump part of the seroma? It's beside the incision site to the right. The hole at my ribcage that opened two weeks ago is to the left of the incision site.



Anyway, while doing the massage I noticed the scabbing was coming off. The tissue underneath to an untrained eye looks like infection but I know from experience with other wounds it is just raw tissue so even though it looks disgusting, it's ok.



So I'm doing the therapy and all of a sudden I felt "pop pop pop" - you know like when you're playing with the bubble packing that you put in boxes? Freaked me out. I guess it is the seroma breaking down.



I sure hope this isn't going to be a reoccurring experience. I'm up to my 3x daily therapy but not at full pressure and I'm handling it.



I did however ask my gp for Demerol. I don't take narcotics. Even after my surgery I only took Tramadol for four days and that was it. Once I started the therapy I decided to go ahead and ask for the Demerol. My doc knows if I'm asking, then I'm in agony. So I take it at night because I find that I'm in more pain by then and even my regular sleeping pills have been having no effect on me.



Anyway, I'm truly hoping this therapy does not cause me to feel like a bloody popcorn machine everyday! I know it couldn't be the stitches that are inside - sutures don't feel like a popcorn machine.



I've found that using Steri-strips that close over a wound but still let it drain if need be have come in handy. Fluid can drain out, nothing can get in. So I just woke up and noticed that tissue exposed so I put the Steri-strip over it. That will help it heal plus if my popcorn boob decides to drain I'll be safe and can slap some gauze over it.



I had a decubitus ulcer (pressure sore) on my right forearm years ago that ended up being 4" wide and 6" long and actually ate through part of my muscle. I had it for almost 4 years. At one point it stopped draining and started closing which caused a seroma near my elbow that was the size of a softball. The ER doc did a one inch cut, drained it and within 6 months the entire ulcer was almost healed. So at least I have some experience with that part of things.



But this popcorn effect? Still freaking me out.



Thankfully my Mum has volunteered to take my little guy for the day and my goal is to pass out for the day - lol.



Hope you other ladies are doing alright with your recovery. Lisa, did they take that drain yet? I've been pretty sick since Thursday night so I haven't had a chance to catch up. My bath was beautiful but within 10 minutes afterwards I thought my world was going to end and been pretty sick since which I mostly blame on this stupid therapy.



Well that's enough whining. Mum will be here in an hour to get Jr. I'm going to get some anti-nausea pills and as soon as he tells me he's leaving, I'm crashing and heaven help anyone who rings me and wakes me - I'll wring their necks! Lol

poodle-mum - I feel physical pain just reading your experience - really!  Owy, Owy, Owy!  Popcorn boob - that's a good one.

I'm glad you're doing your therapy 3x a day as instructed, even though it sounds very difficult.  But no one said this journey we've all been thrown on was going to be easy and each of us has our own individual hardships.  Yours sounds painful and I'm glad you asked for something to help with pain.  Sleep is so important for healing; it's when our bodies heal so if you're not sleeping I'm glad you asked your doctor for something to help the pain so you can rest. 

And to answer your question - yes, I do still have my 2 drains.  My fuild levels were below what is required yesterday, but I'm not going to get excited that I may have turned a corner.  This has happened before but then the levels increase w/in the next day or 2.  As much as I want these out, I don't want to take any chances until we're certain the output has slowed completey.  If they come out too soon, and I end up with an infection because of seroma and they need to be removed - then I'm done w/reconstruction.  This has caused too much of a disruption in my life that I had no clue could happen when I agreed the the procedure...but I've learned more of all the "bad" things that can happen so if the TE's need to be removed for any reason...I'm just done. 

Update on Silicone "Increasers" - to all other ladies with that "itching" or pain w/pressure against chest - I simply cannot wear the fiberfill prosthesis I was provided due to the pain it causes w/so much pressure right up on my chest.  So I tried the silicone "increasers" that Babs posted about and I have to say they are MUCH more comfortable.  I was told I wasn't supposed to wear a bra until 10 days post tube/drain removal so I purchased tube tops with pocket inserts (Amazon - 2 for about $12.00) and put the increasers (again, Amazon for $18.00) in the pockets.  So much more comfortable!  Not entirely w/o discomfort...but much, much more bearable than the fiberfill prosthesis.  Not as much of a "bump" for the boob look; but I personally, at this point, don't care.  Comfort is my main goal and this solved the issue.  Gives a little illusion of breasts and is comfortable enough to get thru the day.

I don't know if any of you have researched this itchy/pain thing that seems to be happening to some of us.  I accidentally stumbled across it (while looking for any info I could find on excessive drainage) - it may be an actual known syndrome - it's call Post Mastectomy Pain Syndrome.  Any of you with these issues may want to google it to read about it and ask your physician if you feel it might be something that is happening to you.  I was surprised to find it, a bit relieved to see what we are feeling might be something that happened to enough women before us that studies have been done and it is a recognized medical condition. 

Hoping everybody has a great Saturday (sunny and pleasantly mild temps here in WI, finally after too many 90 degree days w/high humidity!).  Hope you all have sunshine in your lives!

In a break from sleep :-) Gotta have my liquid shake.



I'm curious about drains. Don't they get removed after the output is 20cc roughly? Or not until there is no output for several days? I read the 20cc thing somewhere and thought that sounded really odd because my "popcorn boob" has maintained approximately 20cc for the past 2 weeks - sometimes shifting either way. So if they take it a drain at 20cc, wouldn't there be a strong possibility of seroma? I'm just curious how that works. I'm one of the few women my doc didn't put drains in.



Yes, I'm glad I finally broke down and asked for the Demerol. Even with all the surgical pain I was at least getting some sleep. I guess it's because it's so soon post-op that they've got this therapy started that has pushed me to the ceiling of my high threshold level for pain.



But, I suppose by the obvious popcorn boob, the man knows when and why to prescribe this therapy. I have a friend whose sister had to do the same (different surgeon) and started at about 6 weeks post-op. She said it was uncomfortable but not painful but she had drains for I think 10 days and no later seroma development. Her therapy was focused on scar tissue reduction - I'm grateful I didn't have her surgeon, I could have done a better job with a hacksaw :-( in fact it was her nurse who did a follow-up with her that recommended the massage therapy.



Yep, I guess we all are in the same boat, we just have different designed oars to row with, eh?

Sorry you are still in so much pain poodlemum, I'm not sure I would have signed a consent had a known the post op compications either. I am sure there are people out there who had an easy time of it and they don't need to come to forums.

I am actually afraid to have my remaining drain removed because of the seroma fear.  I had a huge mess of drainage come out of the side where my first drain was removed more than a week after removal. It was yellow gunk but the remaining drain although down to 20cc is still bright red blood and I don't want to be seeing that coming out a week later...or worse....not coming out.

I wonder if all this fear and panic over drains is a distraction for me from the upcoming chemo. I can't imagine how badly I would be handling it if I had to do the massage and worry about seroma. You keep your sense of humour and that is impressive. 

Wow, poodlemum, sorry for all the complications.  I had an infection at day 10 post-mast and the plastic surgeon immediately opened me back up scrapped out the infection reinstalled new drains and sewed me back up.  Luckily 6 day later he removed both drains and all appears to be ok.

Yesterday I had an appointment with an RO to discuss possibility of rads.  One margin was apparently not clear and is against the chest wall and cannot be reoperated.  So 5 weeks of rads to start first week of October.  My chemo killed the tumor and I only had 5mm of the 3cm tumor left, but DCIS was found in the tumor bed.  Two areas of DCIS were found in the prop breast.  Glad I did not choose the lumpectomy.  My new diagnosis is ypT1a, pN0, mx.  So great final diagnosis.

What I am most disappointed about is now instead of going for DIEP in November I will now have to wait for probably 9 months to pursue recon.  I guess that will mean living with these TE's for a long time.  The RO does not want them filled any more than they already are. 

Onward we march.

Lili - I am praying so hard for the drainage to continue its downward output and you can safely have those drains removed.  It's your turn to march onward.

Wrenn - I don't know about your red drainage but both of mine the final 3 days were a yellowish/clear discharge.  I only had red drainage for a few hours following surgery.  Hang in there your BS I am sure is watching you.

Babs - you sound great.  Keep gaining more strength. 

To those starting chemo, keep a positive attitude, drink water, drink water, drink water.  If no one has told you drink water  Hopefully everyones blood counts come into line.  I had my chemo before surgery so I was very healthy when I started, so I cannot speak about handling chemo after the body has already been worn down.  But your MO will watch you closely and will not treat if you are not healthy enough to handle it.  Praying for very few side effects.  My hardest days were days 3-5 after treatments.  I felt good on day after.  So I chose Tuesdays for treatment and could rest all I wanted on Thurdsay  - Saturday.  Just thought I would throw out that tidbit.  Never had any nausea.  They have lots of meds to prevent that. Take them even if you don't feel like you need them.  Good luck and the chemo threads are really supportive I couldn't have made it through those first 4 months without them. 

Hope everyone is having a great weekend.  I am cleaning out the camper we are going to the beach next weekend for a surfer reunion of friends from the 60's and 70's.  This will be the third year to do this.  Need this so bad.

Wrenn and everyone with low hemoglobin, I sure hope your levels come up so you have more energy soon.  Iron rish foods like beef eaten with a vitamin c source (such as orange juice, etc) may help a little.  Vitamin C helps with absorption of iron.  I didn't pay much attention during my college nutrition class, but I do remember that.

Lisa, I sooooooo hope your drain output keeps decreasing.  I seriously think of you every day!  Getting Fridays for chemo was a fluke, but I am really grateful  MO asked Wednesdays or Fridays...and I had to make an instant decision.  I added days in my head and figured out on Wednesdays, the second treatment would fall on the date of a HUGE event I am responsible for planning at work.  I immediately said Fridays!  I later realized how convenient it would be to have DH be around all weekend, and then have the kids at school when the worst side effects hit on days 3-5.  Sometimes things just work out.  As far as the intercourse question (I used to be a middle school health teacher...no question is off limits here!!!), I think you have to use condoms because some of the poisons...eh, I mean drugs that are so helpful to us in killing our cancer cells, could be transferred.  I'm not sure if I'll have the energy anyway...time will tell!!!!

Poodlemum: I hope your issues resolve and your pain is under control.

Babs and Pam:  Good to see you back!

jbdayton: So sorry to hear about the radiation and the setbacks that will cause.  Uuuuugh.  This waiting game is just about the worst part of the ordeal.  I hope the time passes quickly, you heal nicely and that all goes complication free through the rads and final surgery.

As for me, what a difference a week makes.  Last weekend I was weepy and throwing myself a pity party.  Today, I finally went out for a run (slow jog, but let's call it a run for the self-esteem boost).  I ran a mile, walked a mile, ran a mile, walked a mile, and ran the last mile.  It felt soooooooooo good!  I came home, showered, got the mail and one of my wigs finally came!!!!!!!!!!!!  It is a little blonder than I thought.  I did order it with blond highlights because I thought it would be a good way to find out if I'd like highlights to cover my gray when this is all said and done.  I think I just need to get used to it.  I put on a wig cap and showed my kids.  They LOVE it!  My youngest told me it was nicer than my real hair!  She speaks her mind and doesn't say things to be nice, so I think it must look decent.  I sent a picture to my DH and son, who aren't home, and both gave it a big thumbs up!  I've also had so many people tell me that they are coming out to the bar with me on Weednesday to celebrate my last hour with hair.  These aren't even people I told...they just heard through the grapevine and want to come for support.  Bad times just bring out the best in people, and I realize that all of these people are going to be there, and none of them care whether I have hair or not.  It means the world.  It's so nice to just be back in my happy place, and ready to hit this chemo!

I hope everyone has an absolutely fabulous weekend!

I too am amazed that you can do a run so soon after your surgery KBee. Wow, I can barely make it to the mailbox. I am so glad you posted because it really is good to read about good outcomes. You have a great attitude and one I am working on adopting. :-)

Will remember the orange juice with high iron foods. I am eating a lot of iron rich foods but will add the OJ. 

lol Babs! My youngest daughter has been wearing my wig too!!!! She loves it.

Hahahahaha...my husband just walked int the bedroom and jumped & screamed...startled...the wig on the wig head sitting on my dresser startled him because he wasn't expecting it. It was pretty funny, but then I'm pretty easily entertained these days and have to find humor where I can. He screamed like a little girl...heehee!!

Wrenn – isn’t it funny?  You and I are literally tied to these darn drains the longest and your post about being a bit afraid to have it removed falls right in line w/how I’m feeling.  I want these things OUT – but I guess I’ve now had them so long and have read some of the issues some of you have had (your yellow gunk does not sound like anything I want to deal with! Nor does the seroma Poodle-mum is having to do therapy for!) when either one or more drains have been removed that now I worry something like that might happen.  It doesn’t help that I get a couple days w/levels at 30ml or below and then the next day it jumps up 30-40%.  My fear – I get them removed and my body can’t absorb whatever fluid remains and then the ultimate of fears…..infections and TE removal.  Gosh – does the worry never end with these surgeries??????   Really – I’ve never heard of so many individuals having so many issues all stemming from the same/similar surgery! 

Jeanine – that you for your input on chemo.  It’s really nice having this forum that we can connect with one another and we can have the benefit of others who have had to face some of the issues previously.  It’s really good to know fatigue sets in around days 3-5; I guess that certainly changes my mind on wanting chemo on Fridays!  Right now I’m thinking Tuesdays sound like the best day for me as well but we will see if I have a choice. 

Sorry to hear about your delay in reconstruction.  But radiation and reconstruction don’t always go hand in hand and since killing any remaining cancer is most important…..well, reconstruction will need to wait.  It’s still hard knowing you have to wait so you have my sympathies.   

Is drinking water important? (haha!)  And yes, onward we march – for we must! 

Poodle-mum – good for you doing the Run for a Cure.  Please be careful – you’ve not had an easy time of recovery and doing too much is going to be a real set-back.  Please pay attention to your body (regardless of what your head tells you) and if you need to stop – please stop.  The fact that you are even starting the run is impressive enough.  Just don’t overdo it and then set back a full recovery.  OK?  Oh, by the way – YOU GO GIRL!  Just pay attention to what your body is telling you. 

KBeee – thank you as well for the info on low hemoglobin.  Although, as I was telling my husband “I guess I need to eat more red meat and then drink OJ because vitamin C helps absorb iron” – I have to say I almost wanted to vomit after I said it out loud.  Drink OJ while eating a hamburger?  Drink OJ while enjoying a juicy steak?  See what I mean???  So I ask you this – how about taking a Vitamin C tablet after eating a meal w/red meat?  Sounds more palatable to me but I don’t know if it would be as effective.  

I’m amazed at your energy!  I’m like Wrenn – walking to the mailbox even tires me still!  It is amazing the difference a week can make.  I didn’t hear a “pity party” last week; I heard what is becoming very familiar here and that is “why does recovery seem to take so long” and “I just want to be able to return to my normal routine”.  Not pity – more frustration.  But you had time, shook it off, and are in a better place today.  It is amazing when each of us reaches that “turning point” where things finally start to turn in the right direction and it does so very quickly.  It really helps emotionally when we physically turn that corner!  

I think you are bound to have a very large and supportive party come Wednesday!  Being a firefighter and paramedic puts you in the community spotlight and I think those of us who so appreciate everything you folks do for us….well, its such a little thing for us to come and show you our support in what might seem like a little way yet it means so much.  You’ve got a great group of guys to work with, a community that is surrounding you with their love and gratitude and support – you’re going to get thru this next stage just fine.  You’re a very lucky gal!  

Your wig stories are a hoot!  I can picture your husband’s startled look when seeing the wig on the dresser – and I’m glad it gave you a good laugh.  We do need to find humor where possible…..  I’m glad you (and your daughter) like the wigs.  

Aviva – I checked out the thread you mentioned on head coverings.  I’d like to pass on another site I found that offered free shipping and I received my order in 4 business days.  Here is the web address:  http://www.scarfand.com/

I found a couple of really cute, inexpensive scarves and found the prices incredibly reasonable   I’ve reviewed plenty of You Tube videos and learned there is NO size that is off limits!  I ordered one that is actually a Pashmina – and it works great for a head scarf (you just need to watch whatever videos you can find online to learn how to tie and tuck, tie and tuck).  

I’ll tell you this….tie and tuck is much harder than I thought!!!  I guess it takes practice, practice, practice.  I’ve already received 3 hats/caps and have several more sitting in shopping carts at different sites.  If I’m as terrible at tying scarves when I’m fatigued from chemo as I am now….well, I need backup and I found quite a few really cute hats/caps.  Since it will be the winter months when we all go thru our therapies, those of us in these “arctic” climates need to do what we can to keep our poor bald heads warm – so hats/caps almost seem a necessity.  Although I believe a wig would also be plenty warm and easier to wear during winter than summer. 

Babs – are you as completely wiped out after your first part-time work week as I am?  Good Golly!!  I would have never thought working half-time could tire me out so much!  I’ve spent the weekend trying to rest and still feel terribly fatigued.  I know I have sleep issues because of the tubes but still…..and this week I’m increasing my “in office” hours.  I hope I can manage!  You were pretty wiped out after 3 days, from what I recall, and I’m just curious how you managed the rest of the week. 

Are you driving yet?  Feeling more confident you can handle what the road brings your way?  It’s a wonderful feeling having that freedom back but I took my time with it as well.  What I find most difficult (and have had to make adjustments for) is backing up out of a parking spot.  No problem backing out of our garage because I know there are no vehicles sitting in the driveway – but backing out of a public spot just hurts!  It’s the seatbelt rubbing against my chest while I’m turning my head to look behind me (I never rely on just my mirrors) that is actually painful.  Well, solution – leave the seatbelt off until I’ve backed up.  Simple enough and then I’m on my way.  If you’ve not yet continued on your driving, I hope you get there soon – it’s a real confidence booster!

Have you gotten any better used to the foobs?  I’m just not able to wear them; it’s too painful against the chest.   I hate this tight/taped up/shrinking feeling at the incision sites on the chest – it hurts just having a soft cotton flannel resting on my chest.  I had thought it was the sutures when they were not dissolving but they’re all gone now and I still have that terrible feeling.  Do your still have that itchy feeling?  See, I seem to have a diff sensation than that and I wonder why any of us have these weird sensations.  It doesn’t seem like nerve regeneration to me….but I have no experience in these matters other than what I’m going thru now but have no answers as to why I feel this way.  

I just want to feel “normal” again.  To have the energy I had post op as well as being done with all these strange, odd, sometimes painful sensations that keep popping up making me so uncomfortable!  It almost seems like it will never end……    Is anyone else feeling that way?  

JennH – how did your first week back to work go?  Did you find you tired very easily as Babs and I did?  

Honeybair – how are things going with you?  I wanted to ask you, where did you purchase your turbans from?  I’ve been to headcoverings.com before and I see you mentioned them but is that where you purchased your turbans? 

Did you see PT yet?  I recall you were worried about Lymphedema….  I also seem to recall you were headed for radiation (is that correct?).  If so, have you had that scheduled yet?  And how is your chest itching issue? 

Pam – I hope you get some good answers from your CT scan this week! 

From what I’ve read, generally 4-6 weeks following surgery is when chemo should start.  For me, that’s really pushing it as I’ll be 6 weeks post op this coming Wednesday and just getting in to see my MO for the 1^st time tomorrow!  I pray my labs and everything come back fine because I’m tired of waiting and want to get this over and done with.  It’s frustrating and sad that our system is so overloaded w/cancer patients in need of chemo…..but I feel I’ve been plenty patient having had to wait so long just for my 1^st MO appt that I hope nothing holds up the start of chemo.  For me, it can’t start soon enough! 

Well, ladies…..it appears it will be a busy week for some of us.  Some will be seeing Oncology and getting treatment plans in place, others starting chemo, KBeee going for the shave!!!  (by the way KBeee – I’d like to see a baldy pic if you’re up for it).  Feel free to include the wonderful guys you work with, I’d love to see that great group of supportive men as well!

Keeping all of you in my thoughts and prayers.  May this coming week bring us health and happiness and the fortitude to push forward in our treatments! 

Lisa

Lisa put a small pillow or even a scrunched up rag/sweatshirt under the chest part of the seat belt, really cushions it for driving. I dont like backing up either.