August 2013 Surgeries

Lisa

I ended up working more and more each day.  On Wed I worked 6 hours, came home to rest (we live in LI) and then my DH came home to drive us into NYC to have dinner with our daughter and some of her friends.  Didn't get home until almost 11.  Woke up the next AM and ended up working 7 1/2 hrs the next day and a full day on Friday. Came home made holiday dinner for my DH and me & then collapsed in bed.  I never made it to temple this holiday!  

I did drive to and from work on Friday (I work 3 min by car from where I live).  I put the part of the seat belt that normally goes across the chest behind me so I am only strapped in at my waist.  I find it's not a problem driving but certain turns that I do make my a little worried that I am not getting the usual field of vision and that does concern me.

Saturday my daughter called for us to spend the day before she left to go back to Europe.  So, I drove into NYC, helped organize her, packed her up and ran 2 errands with her before she left.  I hate that she lives in Europe and so does she - I think she'll be back by December-at least I hope so!!!!  Today I'm just tired-probably from overdoing-which is my middle name!

I' m not having any issues wearing clothes over my new foobs.  I wear a cotton tee inside out under all my tops-it just feels weird to have these things since I've been a uni-boober for a little over a year now!  They feel very tight and the left side (Radiation side) pulls more than the right side.  They're mch higher and harder than mine so they seem like foreign things to me.

Is your drainage staying low this weekend?  Hope so, so you can get them out!

Wrenn-showering sounds exhausting for you!

KBEE- I have 3 wigs on wig stands in my bedroom.  The first time my cleaning lady came after I got them you should have seen her reaction-pure bewilderment.  It was too funny!!

Poodle mum-sounds like each day is getting a little better for you-hope it continues that way!

Everyone have a good beginning of the week!

Wrenn - my heart goes out to you, dear!  Having to take care of personal hygeine without being able to shower sounds like such a chore!  I hope that darn drain of yours comes out soon - but only when it's safe - so you don't have such a terrible disruption in your life.  Really, I complain about the drains but at least I was able to shower soon after I got home from the hospital.  So I complain of drains....yet there you are still with a drain yourself AND not being able to shower.  I've learned my lesson - sometimes I forget - but there are others who have it worse off than myself.  I know that, but sometimes I forget, and it's good to be reminded once in a while.

Babs - WOW - you are an amibtious one!  Yes - my drainage is still down on one side; 2 days at 20ml and today looks like it will be the same.  However, the other side was 20ml 2days ago then jumped to 35ml yesterday.  Looks like today will be a replay of yesterday so I don't think that one is ready yet.  I'll give it one more day and see if side 1 stays under 30 and perhaps the other will decrease again and then perhaps buzz into PS on Tues to have both removed.  But I've been here before.....and like I said, when I have a couple good days it suddenly jumps for no reason.  So although I'm optimistic (yeah, I sound real optimistic, don't I?) my track record tells me things can change overnight.  

I did the whole shoulder strap behind me for 3 weeks after surgery when my husband was chauffering me to all my appointments and it certainly helped.  I'm just not comfortable driving like that.  And the shoulder strap only hurts when I turn my head (and with it my body twists) so I keep it off completely when I back up.  Other than that I'm fine with the seatbelt in place where it's meant to be - no problems since it rides between my breasts (well, where they used to be).

So sorry your daughter is going back to Europe.  That has to be hard!  I hope she is able to come back in December.  So how far out on LI are you?  My husband was born and raised in Bellmore.  LI is busy, busy, busy!  We visited by car about 24 years ago and thought the traffic was bad then.  We took a mini-vacation to visit an old friend in Manhattan in April of this year - our friend also has a place out of Fire Island that we went to visit for the day and I couldn't believe how much MORE busy LI has gotten - Oh My!  I don't know how you folks drive in that!  It's insane!!! My head was spinning - I'm not kidding!!!!

Pam - you described your fear very well.  My husbands a 29 year member of the military and I understand completely what that fear is that you described.  That has to be horrible.  So here's the advice we all heard before....try to think of pleasant thoughts and try not to worry.  I know, we've all done that and some of us better than others.  But your fear sounds very deep and that can't be good for you.  Instead, enjoy that shopping!  And enjoy your family from Norway and Thursday will be here before you know it!  Nothing you or anyone else can do or say that will change those results - they are what they are so please don't worry or be in fear of what they show.  You'll find out soon enough and you may just be worrying yourself for no reason - please, ignore everything about it and enjoy life this week.  Just concentrate and follow thru on "I'm just going to enjoy life" - then go to your appt at it's scheduled time with a smile on your face. 

This waiting we've all endured can be hard unless YOU decide you're not going to let it be so.  Really, just throw all responsibility (within reason...) to the wind and do everything YOU want to do for the next 4 days - and enjoy!  You earned it!  And I doubt anyone would begrudge you to do what you want and what makes you happy - so take advantage of it (not too often we get this carte blanche but enduring the surgeries we have after the diagnosis' (I'm not sure you you spell that, sorry)we've received - I am a firm believer that each and every one of us HAS earned it and should use it as needed to get us thru the waiting that seems to never end.  It's all frame of mind - that's what it's all about and will see you thru.

Ladies, I'd like to ask you for some extra prayers. The hole at my ribcage has re-opened and it has almost a 1cm red inflammation around it. I'm praying it's not an infection but I have been pretty nauseous the past two days and I've slept more since Friday than I even did after the surgery.

I'm thinking in the morning to take the dressing I put on it off and take a picture and email it to him. That would give him an idea of what I'm looking at here.




Just a little scared. My follow-up is in 3 weeks but I've already emailed the doc's office with details so I'll hear back from them in the morning.

It's useless going to my local hospital because all they'll say is to contact my surgeon. He's an hour from here. The best ER for these issues is in his town 3 blocks from his office.

When I developed the first seroma I went to my local hospital and they didn't have a clue what to do so said wait for my surgical follow-up 3 days later. 2 days after that the seroma had greatly multiplied in size so my folks drove me the hour to the other hospital where at least we got answers. By that time my bp had plummeted to 90/60. I normally have low bp due to my spinal cord injury. But it dropped from 105/70 ish (which is even low for me) in the 2 days between those ER visits :-(




I hate this whole bloody thing :-(

poodle-mum - you need to get to a doctor.  That's my personal opinion - it sounds like you have an infection and require medical care right away.  Your local ER can determine infection and begin treatment even if they opt to transfer your care back to surgeon - but if you are sick to your stomach, the area is reddened and inflammed - are you running a temperature?, and excessive fatigue...those are all signs of infection.

Please, get yourself medical care asap.  You are in my prayers - you've had a tough time of things and my heart goes out to you.  Please, please get to a doctor.  You don't know how long it will take for your surgeon to get your email so it could be later this afternoon before he even sees it; then it takes an hour to drive there.... - you should not wait, poodle-mum.  You need care now.

Lisa

Poodle mum,

I hope you get good news. I'm sure your surgeon is not wishing he never met you. Please don't be so hard on yourself. Be good to yourself...it will help in your healing.



I am 3 weeks post-op today. I'm feeling good overall. I tend to do a little too much each day and then pain tells me I did too much. Yesterday I thought I was Superwoman, woke up feeling really good and acted as if I was not still in pre-op mode. By late afternoon, I felt intense burning and stinging in my left breast area so today I put myself on mandatory "do nothing" status until at least noon. I've only been back to work for a couple of hours last week. Was hoping to go in this morning but it seems G-D has another plan.



On Thursday, I have an appt with oncologist to find out results of Oncotype DX test which will help me and my medical team decide if chemotherapy is in the picture or not. Really hoping for a low number. If low and chemotherapy is not advised, I am booking a very long awaited trip to Israel for hubby and me!

Ok so we've got good news. No infection. Seems my body thought it was a good idea to expand the incision area on its own so underneath tissue got exposed. So slap some gauze on and go. If he closes it up then we'd have more issues with the seroma.



Jacquie - I envy your trip to Israel. I'm pretty bummed out that I have missed all the holidays so far. I slept through most of them :-(



One of the best times of the year.

PoodleMum - so glad to hear it's not an infection, but I think you were right to get to the Dr to have it checked out. I feel like every medical professional I've met so far on this journey has mentioned concern about infection so I think it must be important to be on top of it just in case. So I don't believe for a second that the Dr wishes he hadn't met you. I live in a rural area and my BS is about 70 minutes away as well.  We have two small local hospitals about 20-30 minutes away in either direction.  The Oncology nurse already told me not to let one of the hospitals/ER's touch my port.  That's not exactly a vote of confidence.

Lisa - thanks for your kind words.  I was still functioning well.  It's possible that my gut instincts were just kicking in big time. (read below)

Jtrosesav - Saying a prayer that you are soon planning a trip to Israel and NOT planning time in the chemo chair. Good for you scheduling a "mandatory do nothing morning".  It's so easy to overdo. If it was someone else we would probably be telling them to sit on the couch but we aren't very good at our own advice sometimes.

My Sunday saga - I went to the ER yesterday with a temp of 103.4. The family wedding this weekend was outside, both for rehearsal on Friday and wedding on Saturday.  And Saturday it poured - so we were outside in the cold damp weather for hours.  Both nights I had the chills by the time I got home and it took some time to recover. Temp was raised a bit but then it went down. Sunday morning after church I got chilled again and it didn't seem to stop and then I got very warm. We decided to go to the ER because I too was concerned about an infection. Although there are still some cultures growing, in the meantime I have an "unusual bladder infection". It's unusual because there were no other symptoms beside the fever. It's the first UTI I've ever had so that wasn't what I was expecting.  However, way better than something to do with the surgery.  They did take a chest x-ray as well as a lot of blood to check it out. So I will take my Cipro for a few days on move on to the next thing. Fever is down today already.

Today's saga - I was sleeping in a bit to recover from yesterday's events and the phone woke me up about 9.  A woman was calling from my gynecologist office and wanted to schedule a pelvic ultrasound.  I said "OK, but how come?"  She had no further information but while laughing together she and I put some pieces and dates together and decided it must be in response to my recent CT Scan. She said the Dr was not in today but she would email her to get some details and call me back.  I checked my email after the phone call and there was a message from my health chart that I had a new email.  It was actually from the Gynocologist from early this morning at 6am letting me know that they saw a small fibroid and some ovarian cysts but they were not concerned about them. However, there was a 1/2 inch of something suspicious in my right ovary. She also mentioned that I would likely be encouraged to do some genetic testing. The other interesting thing about this is that she has not been involved with this whole process so it surprised me that she would be ordering the test instead of the oncologist. I like her a lot so it's fine with me that she's involved - just interesting.  I was able to schedule the pelvic ultrasound for this thursday after my post-op appt with my BS.  It's just in the next building over so it's very convenient - they use the same parking lot.

well we see the onco tomorrow, and unless the wrong tissue was sampled==== my oncotype score is:

2

!

BS said its the lowest he has ever seen. So Im not doing the happy dance just yet, will wait for tomorrow, but it bodes well. Now I feel crappy because my fellow ladies doing chemo have  tough road ahead and I might "only" need AI or tamoxifen.  But will keep you guys posted.

Poodlemum - so glad to hear there's no infection.

Aviva - Yahooooo!  So glad to hear about your low oncotype score.  Don't feel crappy.  This girl who's headed to chemo is nothing but happy, happy, happy for you!

Pam - So sorry to hear of the complications.  I will be saying some special prayers for you tonight.  Praying for quick healing and good news on the upcoming tests.

jbdayton - Sounds like you had a good appointment.  Glad to hear it.

Jacquie - Sounds like you are healing well.  I am hoping for a ow oncotype score for you.

As for me, I had follow up with the surgical oncoligist today.  He said the one scar looked a little "angry", but should heal OK, even with chemo starting.  He said he thought everything really looked great.  I asked him if it was OK that I start running and he said sure.  I told him...good, because I ran 3 miles before showering to come in for the appointment.  He said he wasn't surprised; he aid he figured I'd be doing daily walks the week I got home and would probably work back into running by now, even though not officially released to.  He was exactly right on all counts!  He can read me like a book.   That guy is awesome; every doctor should be like him.

T minus 2 days until the head shaving bonanza.  2 of my coworkers...who are not even on my shift...sent me pictures today that they shaved their heads!!!!  I had no idea anyone was doing it other than the people on my shift.  I don't deserve this amazing bunch I work with, but I sure an grateful for them.  4 days until chemo!

I'm so excited for you!!! Yay!!!

You must feel like a free woman again.

No infection for me, the opening is bigger but he's not concerned because it's just exposed tissue so as long as I keep it covered, should be doable. My next appt with him is in 3 weeks and I have no intention of seeing any hospital or doctor during that time.  I need a break. 

Lots of pain but some is sensation coming back and I think some is that I didn't do therapy yesterday or today because I was freaked out.  So back to therapy tomorrow - they oughta be supplying the bandages free of charge! Hmph

It's so good to see so much good news on here today and hoping for the best for Pam's ultrasound.

Congratulations on getting the drains out Lisa but what a power packed day. That is a lot to take in and absorb. I guess it means you have less time to stew about it though. I hope you feel more comfortable with what is going on once you get into the binder but tonight I hope you just do nothing and take it easy. You deserve it.

I have been thinking of you too poodle mum and am relieved again with your news.

Sleep well everyone.

I've finally agreed to take pain meds at bedtime to get me to sleep (I swore a few years ago that I'd better be on my deathbed before anyone gave me narcotics again). As soon as I asked my gp last Friday he said absolutely and was amazed I had gone as long as I did without them. I did take Tramadol the first four days on a strict schedule - I'm no martyr.



So here I take it alongside my usual diazepam and 3 hrs later I'm awake? Hmph. I want my life back! I want a shower but no dice - only sponge baths because of that bloody hole at my ribs, I want my hair cut but it's almost 1km walk to the hairdresser (usually a 10 minute walk even with a grass inspecting poodle in tow so i have to slow my chair down for his royal highness) and then back and I've only made it 3 blocks outside alone so far. Ok, I know - I need to quit whining, I've got a lot to be grateful for - I just hate being tied to one place and only just this past week made it through without passing out at least once.



I agreed to have them lop off my boobs, not take my freedom away for a month so far - they isolated me for a week and a half before the surgery to my apt so I wouldn't be exposed to anyone with a cold, etc.



Can we all agree that this thing sucks? Hmph



Ok that's the end of my whine-fest. I'm going to try to go back to sleep.

yeah ! no drains! Its amazing the feeling of relief and freedom when they are out. I couldnt shower the whole time, so that first shower was wonderful.  By coincidence we had redone our bathroom right before my dx, so I had barely been able to enjoy the shower yet, so it was doubly nice.

Hang in there Poodle! the worst will be behind you soon= none of any of this is what we planned- I feel still like Im in a dream I will wake up from. These are first steps to being cured, so that is great!  I get angry tho sometimes thinking- yes I should be cured, but not before I had to have my boobs lopped off, take drugs for years, have numerous surgeries, etc etc...

One day at a time

Honeybair – thanks for the info about headcoverings.com.  And good to know about infusion centers……I’m a wee 107 lbs (down from 130 lbs over this past year) and get cold very fast!  I ordered some fleece caps to wear under scarves and some for bedtime but didn’t think about the chemo ward being cold.  They did tell me out of the 19 units I was shown that some do have heated recliners and if I feel I will need that, then I need to make sure I let them know at my first session – I believe I will based on your info! 

Poodle-mum – don’t ever believe your BS ever thinks that!  You’ve had a tough time of recovery.  When it’s tough, the surgeons expect us to contact them and get in to see them when necessary which is what you’ve done.  Please don’t be too hard on yourself – really, you have had a difficult recovery!  I’m so happy to hear your didn’t have an infection (although I’m shocked because the symptoms you talked about sound exactly like everything I was told IS an infection) and that you are on your way to mending again.  And don’t be hard on yourself with medications, either.  When we have pain, we need pain medication…that’s what it’s for.  Being in pain is not good for healing; it makes things worse and takes longer to heal (which is why we all were either given it or offered it after surgeries).  So take the meds you need as you need them. 

I think that itchy feeling you have and the pain “deep down” are all parts of the healing process.  Also could be nerve regeneration and nothing to worry too much about.  My feeling I’ve described before as like someone put very tight tape over my chest incisions and it drives me insane!  Nobody else is describing their feeling like that but my family doctor thinks it’s nerves.  We’re going to keep an eye on it now that the tubes are removed and if it doesn’t get better we’ll try Gabapentin to see if that helps.  I’ve used that before to try to control headaches (didn’t work for that) so it’s a med I’m familiar with and don’t particularly like – it’s an anti-convulsant and they really screw with my head.  But, this insane feeling in my chest is enough of a constant horrible feeling I’m willing to feel a little screwy if it helps.  We will see what happens in the next week or 2.  But since several of us have described similar type feelings…I think it’s part of the healing.  If it gets to the point where you’re being driven up a wall, just let your BS know and I’m sure he can suggest something to help out. 

Jacquie – I’m keeping my fingers crossed that on Thurs you find out you are taking a vacation to Israel!!! 

Jeannine – sorry to hear your reconstruction needs to be put on hold.  But “kill the cancer” is our motto, right?  So first things first and then rebuild….. 

Pam – sorry to hear you were feeling poorly and had to make a trip to ER.  I do hope you are feeling better.  Good thing they found what they did and you can get a closer look at what is going on with that ovary – and if you get genetic counseling too that is great!  I feel the more info we have before starting our therapies, the better!   It’s great they caught it and get a closer look now w/ultrasound – I’ll be saying a prayer that everything is fine for you!

Aviva – I do hope they used the right tissue this time!  That would really stink if the hospital erred again!  I know nothing about what the results mean but apparently you do and it sounds good so that’s great news!!!! 

Don’t be silly about feeling guilty!  Gosh, we all couldn’t be happier for you.  You do that happy dance (once you know the right tissue was used, of course) and know we dance in spirit right along with you.  It’s nice to hear some GOOD news with one of us and I do hope you avoid the chemo, I’m really very happy for you!

Kbeee – I’m thinking of you and will be there in spirit tomorrow night.  You really do have a loving group of individuals at the Fire Station as well as in your community – I hope you have a roarin’ party!!! 

You crack me up w/your running and what you said to your BS!  You’re a strong lady and it doesn’t sound like there’s anything that could keep you down – I stand in awe of you!

Wrenn – Yes, I have very little time to stew about things.  I didn’t see that coming!  With all the waiting we do I expected another waiting game before getting started w/chemo so it really threw me that she wants to start next week.  But, even though I don’t think I’ll get thru the binder she went over the most important things with me and when all is said and done, I don’t feel like I have a choice.  Not interested in taking any chances and the recurrence rate is too high to not do chemo (for me personally – others might feel diff and I’ve no problem with that).  I can cut that 27% chance down to a 12% chance so I’m going for it!  I see it as a life saving measure and I want to be a Grandma one day so I need to stick around a while longer!  Just so much happening so fast but I would stew on it if the time were there so it’s best this way.

Good for you with your walk!  Funny how things happen, isn’t it?  Like I’ve said, we all have that turning point and it sound like you had yours – now let’s just get that last drain done and over with!  True, you’re likely not going to be able to shower right away but they told me yesterday that the hole, under normal circumstances, should close in about 24 hours.  So only a couple days after that tube comes out you should be able to safely shower.  And the area needs to be kept clean (which is why I find it so strange some of the PS’s don’t allow showers when you still have tubes) and showering is the easiest way to get that done.  Beats having to take Q-tips or something to clean specifically that area and seems safer to clean it in the shower.  I just don’t understand the theory but I’m certain there is a legitimate reason.  But that first shower is going to be such a blessing when you get it!!!!!! 

Am I rested – well, no.  I’ve been up since midnight.  That darn antibiotic!  I was rudely awaken and spent quite a bit of time in the bathroom and I could not get back to sleep so I’ve been up for too long and am exhausted.

Update….So, I get home from work and try to just rest for a little bit since I was up most of the night.  My Insurance Coordinator calls and we need to go over everything that MO wants done so she can get all the referrals in place.  So after that, I try to rest a bit….but the phone rings about ½ later and I was in the bathroom (again) and couldn’t get it in time.  Go pick up the receiver and see that there are 5 messages that came in this morning.  All stemming from my Oncology appt yesterday….

Seems my MO wants a port placed for chemo and I don’t want it (and declined it when BS offered it at post op visit) and she must not have realized I was missing one when she did physical exam yesterday (and I sure as heck didn’t bring it up!).  BS looked at my arms at post op exam and said “that’s fine, you have good veins and they can administer that way”.  The nurse who gave me tour of chemo ward looked at my veins as well and said “no problem”.  Well, all 5 messages that came in while I was at work were the CancerCenter calling saying my MO wants a port place and they contacted my BS office and actually scheduled the procedure for Friday.  I know I probably sound like a baby but I DO NOT WANT A PORT – I freak with the idea of a foreign object imbedded in my chest and don’t want it.  I called MO office and left message saying just that – she is going to pass the message on to MO and I’m waiting to hear back.  I want everyone to leave my chest alone for a while – I’m not interested in someone cutting into it again nor do I want something else foreign in there.  The TE’s are difficult enough!  I’m so frightened I’m going to hear that they INSIST I have it for “safety” reasons……did any of you do chemo without a port? 

And my sides burn….I expected to feel great after getting tubes removed but that’s not quite how I feel – far from it.  My PS made it very clear he wanted me to take it easy the next few days and cancelled my next expansion and was adamant no heavy lifting.  He wants to wait 2 weeks between drain removal and expansion so that’s fine.  I’ve not overdone it today and have done NO heavy lifting, but just stretching to reach for something aggravates my sides terribly.  They are just so sore probably from having the tubes so long and then just getting them out aggravated the area – but I wanted to feel great.  Was that really too much to expect?  Does this nightmare never end?

OK – like I said I’ve been up all night and I sound crabby – sorry about that!  Just “letting it out”…..

I really do hope everyone else is having a better day.  I’ll check in later with hopes of seeing just that!!

Aw Lisa, so sorry. My oncologist specifically said there will be no port and I hadn't even brought it up (and I have terrible veins)/  I think you should just stick to your guns and refuse it. You can ask them to let you try without it and say you will get it later. I think you will be fine without it and can prove it to them.  I don't know how you manage to work with so little sleep. I wish this wasn't happening. So difficult. :-(