August 2013 Surgeries

Pam358

Wrenn - sorry you are having to endure a crappy mood - but by all means vent and rant away! Honeybair - thanks for the prayers for everyone and for the tip about the January message board.

poodle_mum

Lisa - Yes, our Thanksgiving is the second Monday of October. So a lot of families generally have their big family supper on the Sunday of that weekend.  The walk/run is the first Sunday of October.

As for the tube top - I too wanted to avoid lace, the ones I found are completely cotton right from top to botom and then the lace is added over the cotton so that it actually does not touch the skin.  That is one of the reasons why I chose those ones.  They look nice and also by next year when everything is nice and healed they will look nice under an open blouse or whatever with the lace, sort of like a camisole style.  Because I am a petite person to begin with, and when everything is healed I'll be about a AA (as opposed to the D that I once was), I found the Asian ebay sites to be fantastic to look for things.  I dread next year when I will have to start re-creating my wardrobe because all my shirts will drown me - right now even the biggest sizes I have seem to be too tight even though when I look in the mirror they look more likes dresses - I'm just so sore and bruised inside (not only from the actual procedure but probably from his fishing expedition since he went right up under the arms to look for lumps, etc.).  I just hate the whole idea of wearing clothes right now even though it's a given, something needs to be put on :-)

Anyway the tube tops I found said they fit 22-31.5" so I thought that would be perfect!

babs6287

Thank you all for your condolences.  The last few days have been very trying-waiting to get word from my brother on the arrangements for his wife's funeral etc.  It's all set now.  Friday and Saturday in Florida so now I have to postpone my first fill so I can be there for him.

Honeybair-happy belated birthday-I hope it was a great one!

Pam-so happy the scans were good!

Poodlemum-great job of fundraising!!!!

Kbee- glad your first chemo went well

Lisa

I too chewed on ice during the treatments.  I never developed any mouth sores.  I was also told to and did rinse my mouth with Biotene mouth wash.  Foods that I usually loved, tasted like metal.  I never iced my hands or feet.  I found myself cold a lot and couldn't bear being colder than I had to be.  My MO gave me all different meds-to take for nausea, anxiety, etc.  I really don't remember all the names.  All I can say is that I only took the anti-nausea medication once.  I did take Prilosec throughout the whole process based upon our closest friend who's a gastroentorologist's recommendation .  The most important thing I can tell you is to drink as much water as possible-especially while taking adriomycin.  You also should have your husband use a different bathroom for the first 24 hours after your treatment.  The AC is very toxic and you don;t want him  to have any contact with it.  Also, eat protein and green leafy cooked vegetables.  I didn't eat any sushi or fresh friut (my favorite thing to eat)  I stayed away from dairy foods.  Since this worked for me and I really did NOT have a hard time with the chemo these  are my suggestions for you. I had really bad SE's after my first Neulatsa shot so after that  I took claritin before and after all of my other neulasta shots which worked like a charm,

I'll probably be very busy the next few days so PM me any other questions you have!

Everyone be well!!!!!!!

Babs 

LiLi1964

Wrenn – see, I told you that we two seem to think a lot alike and seem to have had similar, LONG recoveries.  And it is a blessing we have found this forum – I’d have been completely lost without it! 

You sound like you’ve had a bad day – I feel for you.  You’ll turn a corner soon – I do hope you don’t have another infection…..it’s your turn to feel a little normal before our next step in the horrible journey.  We should at least get a little better before possibly feeling like total crap again – unless we happen to be one of the lucky and handle the SE’s w/o many problems (I’m not too hopeful for myself, given the painful and never-ending recovery – you could say “if I didn’t have bad luck I’d have no luck at all”).  Not feeling sorry for myself, it’s just how things go sometimes.  So I always anticipate the worst and usually am relieved when something isn’t as bad as I thought it might be (certainly was not the case with BMX and TE Placement!!!!!!!).  But perhaps you can be one of the lucky – I pray that for all of us! 

Jennylee – Welcome – you sound like you’re not having a very good day either.  Trust me when I say my patience was sorely tested; and I don’t know if coping well or not is what I would call it.  Some of us have had a very difficult time with our recoveries.  I’m pretty sure none of us expected it to be as bad as it was.  If there was anyone, I’m not recalling who it was – it’s a brutal surgery and we all heal only as quickly as our bodies will let us.  I didn’t have problems w/incisions or infections so I can’t speak to that but wanted to let you know you are not alone in how you’re feeling.  All I can tell you is that you are only a few weeks into recovery and you may want to prepare yourself for a couple more – perhaps not but I believe you should be prepared if it does happen. 

Honeybair – I’m so sorry you didn’t rest well in bed!  I didn’t the first few nights either; and I stayed propped up on 3-4 pillows until just this past week.  That was 6 weeks past my surgery date – so like I said to jennylee – we all heal in our own time.  It really stinks that we were all so unprepared….I think the docs could do a better job and not be so optimistic about everything.  We all should have been better prepared for what MIGHT lie ahead.  I just hope you can get back to bed and be comfortable and rest soon! 

Does the misery ever end – I hope so!  I keep hoping…..

Thank you for all the chemo info – I had not realized you, too, had the same regimen.  I will definitely visit the January 2013 chemo thread – but not until after……I don’t want to read the daily turmoil’s – yet – I’m sure I’ll get there soon enough….. 

Poodle-mum – I hear you about everything looking like a dress!  I was small chested to begin with, but I did have a chest!  Now, well not even the “baby-boobs” I hear others have – just a lot of nothing.  And of course nothing fits.  Nor will it until we get some more expansions and I know they will take it slow given all the post-op pain I had.  But at least w/tubes being removed I have that horrible tight-tape feeling across my chest gone!  I can actually wear my foobs (but they get yanked off as soon as I get home from work) but at least I can tolerate them while having to be out in public.  So, progress! 

I’m assuming KBeee is likely feeling the effects of the first chemo?  I see she has been quiet here as well as the Sept 2013 Chemo thread.  She may just be busy this weekend – but I’m going to say an extra prayer for that little spit-fire this evening.  If I recall these are the days she expected to feel poorly and perhaps her expectations became reality…. 

Good night all.  As always, each one of you are in my prayers and lets all hope for a happy, healthy and as pain-free as possible week ahead! 

(sorry if I missed anyone – if I did it was not intentional)

poodle_mum

Update: I finally did my therapy twice (and one mini version). The one I did sitting up. BAD choice. Not only was it painful and I couldn't put proper pressure on it, I also was extremely nauseous and nearly blacked out.



So tonight I did it after I went to bed. I did the entire therapy and the popcorn boob actually did release some drainage, even the two under the areola (when I did it sitting up I didn't even know there was a second one). I also discovered a swollen pocket (just before bed) under the hole across almost the entire part of the ribcage. I'm going to keep an eye on it. I've noticed I've had a lot of pain there the past few days but I thought it was just from doing too much. I think it is the original seroma but it's just a heck of lot bigger. I say this because when I did the upper part of it I felt it starting to be part of the popcorn boob.



My right side that physically almost looks normal (if you can find a definition of normal with what it looks like), is extremely swollen. Ironic. It had that accordion look to it that is still there but definitely swollen, to the point that earlier tonight I could feel the swelling going in the direction of my under arm and after putting on my undershirt today I looked in the mirror and saw it was bigger than the other one. As much as I hate to say it, I'm hoping something opens and it starts to drain that way.



I'm glad I did it this time while laying down because I was nauseous again and it helped to find spots that were not noticeable sitting up.



If only my right side would turn into a popcorn boob, it would probably be more bearable.

I'm getting lots of fluids - I can't drink clear water because one of my meds causes it to taste like metal but I've bought those huge cans of flavoured ice tea powder and I only use 1/3 or 1/4 the amount of the powder that it calls for to make up over 2 litres of water and just that little bit of flavouring helps me drink at least 4-6 litres a day.



I did visit my Grandma at the hospital on Saturday and decided to show her. She reassured me they will heal and that she was glad they got everything out and it was very nice of the doctor to try to give me something up here. I told her I could have had implants and she said "he was able to create something from what you already have and I'm glad you didn't get them."



To all you ladies here, I feel like I know you so well despite only being here a few weeks and we're each individuals who have different diagnoses and treatments. My heart goes out to each of you as you face the next step on your journey.



I can't recall everyone's names and as I'm on my phone it's difficult to scroll up and by the time I scroll back down, I'll have forgotten your names. That's one thing that baffles me. At 40, this thing has caused so much short term memory problems but they say it's the pain, meds and lack of sleep. I'd like to get back to work but this is a slow recovery.



In any case, I want to express my condolences to the one who lost a family member recently. I also want to wish a belated happy birthday to the birthday girl. As for the head shaving party, I'm glad it went so well, it is such a blessing to have family and friends rally alongside you.



To Jennylee, I extend a warm welcome. I found this support group soon after my surgery and all the ladies welcomed me with open arms, during rants, raves and accomplishments. There are days when I don't think I can bear anything more (especially when I ended up in the ER three times in one week in addition to my surgeon's office! ).



I keep you all in my prayers and I hope even though everyone is going to other topics that pertain to your individual needs (I have as well), I hope we stay together for longer because I feel we know each other so well and we are the August ladies.



All my best to you and you are all in my prayers as you enter this new stage of recovery.

And yes, I think the phrase "popcorn boobs" will stick around - it definitely describes things well but it also makes things more bearable for me during therapy because I get a chuckle even when the pain is so bad.

Sorry for my notoriously long post :-)

poodle_mum

Is it too much to ask to get some sleep for a change?



Even with pain meds and sleeping pills I'm averaging 3 hrs sleep, 4 hours awake and then maybe a few more hours of sleep.



I hurt and I'm exhausted.



My back is killing me opposite the surgical site. What gives? They lop off my boobs, I finally get to the discomfort zone occasionally and now my back aches?



Well that's my beef of the night!

Jo6202

Poodle mum,

I was just complaining to my hubby about now my back aches. He said that I was not standing straight and always have one arm supporting my boobs. Trying to stand and sit straighter and keep my shoulders down.

aviva5675

poodle = have you asked any of the docs about something to help you sleep?  I dont necessarily advocate more drugs, but having something to help you get thru the night will make you feel better overall. When I was dx in July I had to go off the hrt right away and immediately started getting hot flashes again and trouble sleeping. I started taking a very low dose of generic zoloft, and also do a half dose of zzzquil an hour before bed- and now its kicking in, I am able to get a few hours at a time and generally fall back asleep.  Its helping. the anti-depressant is for the hot flashes-= not for depression. If it also mellows me a litlle, thats fine- but I take it for the menopause symptoms.

Of course starting back half days at work today I now have to get up at 515 am, so Ill probably drop into bed tonite and sleep like a baby.

wrenn

Back in hospital here. Seroma formed at site of drain and burst through surgery incision. Bled all over and freaked. In cor 2 or 3 days and hard to thpe on phone but will try to keep up. I quit my surgeon

babs6287

Wrenn I'm so sorry for you.

Please try to stay positive, I know it's not easy, but you have many sisters here cheering you on.

Babs

Jo6202

Wren,

Oh no! I would have freaked out too. Hopefully, you will get some good care in the hospital.

KBeee

Oh Wrenn, I am so sorry that you are back in the hospital. Prayers that you will heal quickly. I hope they take good care of you, figure out what is wrong, and get back on the rapid road to recovery. (((HUGS)))

LiLi1964

Aviva - congrats on returning to work!  Hope you fall, dead-beat into bed tonight and get a good nights rest!!!

I worked 1/2 days for 2 weeks; returned to work full-time today.  And I'll second the use of sleeping pills when nothing else works.

Last Monday, I finally asked my doctor for something.  I hadn't been getting more than 4 hours of sleep a night (if I was lucky) for 5 weeks post op.  Then that first week back to work even at 1/2 time completely wiped me out; but still could not sleep more than 4 hours.  Took the sleeping pills but first night it did nothing.  Next 2 nights, took them and that's all I needed.  Got 8-9 hours of sleep each night and sleeping regularly (ie pre surgery) again.  So when needed, and if anyone goes 5 weeks w/only 4 hours of sleep a night knows, it's needed.  As I've said before, we can't heal if our bodies are not resting properly.  Just those 3 nights of taking something for sleep and I feel SO much better all around it's imposible to quantify.

Jo6202 - posture matters, I found out, too.  I was hunching inward because of the chest feeling so strange and tight.  I had to keep making myself aware of what I was doing and correct it immediately.  Not always easy but in the long run makes a person feel much better.  I hope your back-ache gets better soon.

Poodle-mum - sorry to hear of your continued issues w/recovery.  It has to get better soon; it just has to!

OK, everyone....I'm getting a bit anxious for chemo in 3 days.  I'm really nervous!  I keep telling myself the advise I gave others "we're on a search and destroy mission to kill any remaining cancer" - I keep telling myself that but anxiety is still building.  I have my PET Scan in the morning and EKG tomorrow afternoon.  I hope both come back well; honestly I'm not even concerned because my anxiety over the start of chemo overtakes all.  I hate this journey! 

I have a little more info on the Port in the arm and the PICC line.  The port in the arm IS a PICC line.  My MO nurse called me today and I asked about the PICC line and she said that is what others sometimes call an arm port.  Apparently they don't offer it because most women simply do not want the trouble that comes with it.  Problem (for me, anyway) is a PICC line needs daily maintenance.  Either myself or a family member needs to flush it daily (I can't do that) AND it is partially external (that would be a pain, literally).  So, should my veins give me problems.....I'll just do the darn port in the chest.  There are never simple answers to any of this, is there?  Just one more incision......

I'll continue to post on this thread.  I've posted occassionally on the Sept 2013 Chemo thread and although some seem very nice over there, it seems as though there are a few ladies that keep the conversations to themselves (not saying they aren't very nice women - and a gentleman hopped in last night - they are very nice but they seem to mostly converse with one another; kind of like the cliques you would see in High School).  Actually, they are a group of ladies from the August 2013 Chemo thread that felt uncomfortable in that thread (I believe what I read was "yes, they are nice but not really where I want to be").  I'm not sure what that meant but I think I can somewhat understand because I feel that way about how the Sept 2013 Chemo is - some just seem much more edgy than I myself am so I'm not really comfortable there.

So I hope you all don't mind my hanging out here.  I'll pop into the Oct 2013 Chemo group to see how that is (I'm so late in Sept it probably is more where I should be anyway) but I just feel so comfortable with all you here and feel like I'm among friends.  I can share freely with all of you - and we've been thru many weeks together and ranted and sympathized and encouraged - its just comfy here.

Hope everyone had a great (and as pain free as possible) day!

LiLi1964

Wrenn – I took so long and took breaks during last post I missed your update.  I am so very sorry you are in the hospital and having even more problems because of drains.  I wish I could be there to give you a big hug and just sit by your side to help you thru this – truly I do.  Having come this far and now this…….my thoughts and prayers are with you!! 

I know it’s difficult to be positive with this set back, but perhaps with the hospital staff and a new surgeon, you will get better care and be back on the road to full recovery in a short time.  We’re all with you in spirit; don’t forget that! 

Please take care of yourself.  Keep us updated on your progress. 

Lisa

KBeee

Aviva, I hope work went well today.

Poodlemum, I hope you can get sime sleep.

Lisa, I sure will be thinking of you this week. I hope all goes well with your scans, and that your chemo goes well. Do you have someone going with you? The Sept chemo group is a big group. I sometimes log on and find 3 pages of new posts! I have learned a lot there. Usually when I reply, it is with an update, or one of the questions that stuck in my head. With so many posts, it is hard to reply to them all. I do find people having similar concerns though, and have found the information very useful. By the end of this week, you will have one chemo down and will be that much closer to the finish line! I am so happy to have gotten one done. Now...if I could just fast forward time.........until we are both done!!!

Pam358

Wrenn - oh no, so sorry to hear about you being in the hospital. I hope things improve very soon. Sending positive thoughts and {{{hugs}}} your way!

babs6287

Lisa -Hoping all the scans are negative and that you find your first chemo treatment easier than you think-the mind can make us crazy at times-it goes to so many places!  Just think, by this time next week you'll have one less txtment to go!  Use the countdown system-it really does help!

Kbee-love how you're using the countdown!  When you make it to the 1/2 line you'll really appreciate it!

Wishing EVERYONE an easy day!!!!!!!!

Babs

Jo6202

Lisa,

Hoping your first day of chemo will ease your anxiety. Have not had it myself but sat with my son through it 8 times and was never so anxious in my whole life. After the first one and only a little nausea ( both of us from anxiety) he did very well. His treatments were on Friday and he was always back to work on Monday. I think the unknown causes so much worry. They have so many anti nausea drugs now if one doesn't work ask for a different one.

Best of luck to you. This will be behind you soon.

jbdayton

Wow miss a week on this board and everything changes. 

Wrenn - I cannot believe you have a new problem.  I was so excited when the final tube came out.  Hopefully the new surgeon can repair the affected areas and get you healing properly.  At my first followup appt at 10 days out my PS found small pockets of infection and immediately opened me back up scaped out the infection, sewed me back up with new clean drains and 6 days later removed the drains and said I looked great. 

For all starting chemo my prayers are with you.  I still remember vividly the feeling of dread.  I was lucky and had very few SE's that slowed me down.  I did TAC but all 3 meds at once on a 21 day cycle.  My final pathology was great with a near pathologically complete response.  Just a very small margin not declared clear.  My original tumor was against the chest wall with possible invasion so radiation is still needed.

My best tips for A/C is drink water, drink water and when you feel you are floating drink more water.  I also found eating 6 small meals was better for me.  I did get the thrush each time.  It was nasty.  I used a miracle mouthwash my onc staff suggested.  1 part Maalox, 1 part liquid advil, 1 part liquid benedryll, and 10 drops lidocaine.  It was a wonderful soother.  This is different from mouth sores, that I did not have a problem with, I did suck on ice chips throughout my drip of Adriamycin and Taxotere.  I did and do still have some minor neuopathy in the finger tips and toes and did lose both of my big toe nails but they are growing back in and looking great now.  I did not ice my toes or fingers, good luck to those who choose to.  Some ladies from my group used bags of frozen peas.  Some had luck and some didn't.  I did have a bad case of bone pain wth my first Neulasta shot so the onc had me start taking the Claritin 2 days before chemo and 7 days after and it worked like a charm.  The Neulasta did wonders on my blood counts, never even pushed a bad level in any blood test. 

I know you get tired of hearing chemo is doable but there is no better word to describe it.  Not fun but not as bad as I dreamed it would be.  Lots of walking even when you do not feel like it.  I know it may be harder for some of you because you have already been knocked down with surgery.  I was very healthy going into chemo since that was my first treatment.

Welcome to the ladies joining recently.  I will read and get updated on everyone. 

I plan to remain here on this group and will join the fall rads group and lurk on the chemo boards for Sept. and Oct. to see how things are progressing with each of you.

  

violet_1

Wren,

So sorry! Hope a NEW surgeon gets you healthy soon!



Violet

aviva5675

wrenn- we are all thinking of you and wishing you speedy recovery.

Lisa- good luck with the chemo, we are here for you to share your experience. Just cause we had our surgeries in August and are having different treatments now doesnt mean we arent continuing the journey together.

Today was my 2d day of half day work. Yesterday was more tiring that I expected- more moving/stretching arms so by the end of the 4 hours my chest was sore. Took Tylenol when I got home, took it at work today about half way thru, and I feel a little better today.  The doors there are all solid, I never noticed how heavy they all are! I can push some, but the pull ones are I crack open and shove my knee in.  Put in for another week of half days for next week- easier to get release for 8 hour days and be extra person, than to keep saying every day half day and them have to find coverage. Where I work each working position needs someone there- so I can't just take off and they don't need to cover it. 

honeybair

Wrenn, so sorry for your problems post surgery.  Do hope you get these issues resolved very soon and will heal as you are supposed to.  I am pulling for you.

poodle_mum

So I thought I was home-free of seeing my surgeon for another 3 weeks, but I took a picture yesterday of the wound under my left breast to show that the hole is larger and he wants to me tomorrow after he finishes surgery.  He probably thinks I'm one of the most paranoid women he's ever met in his life but I believe incisions should stay closed and even a seroma opening should not continue to get larger every week.

Oh well.  I'm definitely certain this doctor is wishing he had never met me.  I think if he had just put in the drains in the first place I wouldn't be in this situation.  My right breast just keeps getting bigger too.  It's like a lose-lose situation  and I hate to think of what the ultimate outcome could be if things take a turn for the worse. There's not much "material" left to work with up there and if I lose anything, I'll lose it all :-(

Oh well, that's my beef of the day.  I'm rooting for all you other ladies who are going through tough spots too.

LiLi1964

Poodle-mum - please don't think your surgeon thinks that about you!  If you have a problem.....that's what he's there for.  I have to say I was shocked to hear you had no drains and have always wondered if that is what is the cause for all your problems.  I didn't say anything because what's done is done - none of us can go back and change the past.  All we can do is push forward as best as we can.  I hope everything is alright!

Wrenn - I hope you are getting the best of care in the hospital and things are progressing for the better.  I so feel for you - you feel like an adopted sister to me since we've had so many common issues and thoughts in this journey.  I continue to keep you in my prayers and if we lived closer, I swear I would be by your side helping in any way I could!!!!  I want nothing but the best for you and I know you have your fears in this whole situation (as we all do) but if there is anything I could do from so far away, please ask.  I'll do anything to make it easier for you.  You take care of yourself, get plenty of rest, and update us when you feel up to it, please!

KBeee - yes, my husband will be by my side during chemo.  Honestly though, he likes to nap and I'm sure he will take full advantage of the 4 hours to do just that!  We had to be at the UW Hospital for my PET Scan this morning and we picked up ALL the scones they had in the cafeteria (these are the BEST scones I have ever had in my life - had them years ago when I had surgery and my husband brought one up for me instead of the icky hospital food offered and I've been hooked since).  I figured they would be a great thing to have w/me during chemo because they are filling, they are starchy (help calms the tummy) and they are a treat for me - I deserve one w/what I'm going thru!   I've asked him to closely watch the Adriamycin at the IV line for any redness or swelling because I've heard if you see that the nurse needs to be immediately notified.  Why did I ask him to do this?  Because I have that in my head now and MAY see something happening that is not actually happening so I don't want to cry wolf when there is no wolf - he is more level-headed that way so he's in charge of that (that's the short infusion, isn't it?).  I have told my husband the next chemo he can come in to get me started.  Once that is done, I'm sending him over for the 15 minute drive to the UW Cafeteria to snag as many scones as possible so I can freeze them to have on hand for future chemo sessions. I will treat myself to 1 (or more) between chewing ice.

Jeanine - I'm keeping your little concoction in mind should I need it.  Sounds gross - but if it takes care of the problem, that's all I care about! 

Jo - So sorry to hear your son had to have chemo - that had to be very difficult for you.  I have a little worry about the nausea; my MO said there are several very effective ones but some of those have side effects of headaches....and she wants to avoid using those if possible to keep my headaches from flaring during all this.  However, given a choice of spending a lot of time over the porcelain throne....I think I'll take my chance w/headaches (they can always give me something stronger to keep those from getting too bad for the short period of time needed - I hope it's a short period of time....????)

Aviva - I did the same thing w/2 weeks of 1/2 days; it was actually at my employer’s request.  He knew I was having a difficult time w/recovery and didn't want me doing too much at work that could delay my full recovery.  And I too had an issue w/doors; it is so amazing how heavy they are and we never realized it before!  I've gained enough strength BUT if it is a "push" door....I still use my backside to push it open instead of putting the pressure on my arms and therefore, chest.  And I'm glad my employer made the suggestion of 1/2 days for 2 weeks because I needed it after all.  Having finally been able to sleep w/aid of sleeping pills that 2nd week; I was fully able to handle full-time this week.  And it feels great to be back to some normality (even though there is an insane amt of work to catch up on!).  I hope your energy returns soon - how did you sleep last night, by the way?

Honeybair - did you try the bed again last night or go back to the recliner?  I do hope you begin getting some decent sleep soon - and that you can get comfortable and back to bed to get that rest you so desperately need!

Here's another concern I have:  I've been taking generic Claritin for probably 7 years as well as Prilosec.  Do you think those 2 will be less effective for bone pain and acid reflux because I've been taking them so long already?  All these worries!

Oh, I asked the MO nurse about chewing ice and she said that some people do that - so I asked if they had crushed ice there.  Her answer, "no but we have the cubes that we can let sit in water to soften up" - so I said I would just bring my own crushed ice.  She said they have heated blankets so I don't need to worry about that - and I've opted to not ice my feet and hands (I'll take my chances there).  Reason for that is I've read that cold hands can cause the veins to be less receptive to the IV's and I want my veins as receptive as possible!  I have an actual "chemo box" here at home filled with food that I want my husband to keep his hands off of!  High Protein/High Calorie foods, raisins, craisins, salty pretzels, salty tortilla chips (I hear the steroids make people crave salty foods), Nuts, Cinn/Sugar Graham Crackers and other misc items.  I hope I'm prepared enough for what might come my way.

I had a long talk w/my daughter yesterday and she wants me to try essential oils - I have to get that approved w/MO.  One thing she told me is that Clove and Oregano are GREAT anti-fungals.....my hope is to avoid Thrush.  So instead, since I don't know if MO will be OK w/the oils themselves, I ordered Perio White toothpaste and Perio mouthwash which both have clove and oregano as well as other oils to cover the Thrush issue (I've never had any results from Biotene so I don't want to rely on that).  Also decided to change to a natural deodorant so ordered Arm & Hammer Essential Natural deodorant - I want to stop using those products that contain Aluminum (who knows what those have done to all of us all these years?).  Other items listed in the Chemo Shopping list I already have on hand so I believe I'm covered.  Oh, also purchased a Ninja Crush/Blend/Chop today so I can make protein drinks and smoothies - I am really nervous about losing weight if my appetite drops so I'm doing what I can to have things on hand w/high calories and high protein - I hope it works as I've gotten so thin I don't want to lose even one more pound!

So, I think I'm as prepared as I can be.....should have the EKG results already but my family doctor and clinic PAC are both out for the week and I don't know if the doctor who is working in their replacement will release those results to me via electronic chart (like my doctor always does as soon as they review the results I have it w/in minutes of their review).  I may have to wait until MO visit on Thurs to find out - same w/PET scan.  That's ok - what's one day with all the waiting we've done so far.

I'm still nervous, anxious and worried - but I sound like I fall in w/a very large group of people who felt the same way before the first chemo.  Hoping for the best; that's all I can do.

Thank you all for your words of encouragement - I'll update you as soon as I can.  I have several appointments on Friday but should be able to get a post together letting you know "it was all fine - I worried myself for no reason at all" - I'm trying to keep positive that that is what I will have to report.

Take care all!  Again, my prayers and thoughts are with you all!

aviva5675

I seem to be in a good rhythym- Go to sleep at 9, wake up about 130, but can get back to sleep. If I work I get up at 5. Today I go in at 11, so I got up at 8.  I try not to sleep late cause its hell trying to get used to getting up at 5 again!

KBeee

Aviva - I am glad that the half days are working out for you.  It is probably nice to be able to get back to a little "normalcy" (if there is such a thing) and into a routine again.

Jo - I cannot imagine having to sit through chemo with my child.  One of my daughter's gymnastics teammates had Ewing's Sarcoma last year and had an entire year of chemo treatments.  I remember bawling just reading the posts from her mom, and always wishign and praying that if someone had to have cancer in the family, let it be me and not one of my children.  Everytime my 6 chemos seems overwhelming, I just have to think of her teammate and get a reality check.

Wrenn- I am thinking about you and keeping you in my prayers.  I hope the hospital is getting a handle on things and that you are improving daily.

Poodlemum - I hope your doctors are finally figuring things out with you too.  It must be sofrustrating to continue to deal with complications day after day after day.

Jeannine - I am so glad that chemo was so successful for you.  That reminds me to keep the faith...that these irritating, but manageable side effects are so worth it in the long run.

Lisa - I am still thinking of you this week and praying for manageable side effects.  My mouth was watering reading about the scones!  They sound awesome, and freezing them is so smart.  There are definitely some things that appeal to me and some things that don't.  I am typically very soncerned with eating healthy.  Right now, my only concern is not losing weight, because I am pretty thin anyway.  So...if something sounds good I eat it...and eat more of it...and more of it.  In fact, I might have eaten 6 pumpkin bars last night!  My throat has been a bit blistered, and they not only tasted good, but they were soothing!  Are you at the U of W in Madison?  I have a very good friend from work who just began med school there.  He raves about it.

Pam358

Poodle_Mum  I sure hope your surgeon has some answers and can help get you on a better road to recovery, you've had to put up with soooo much.

Lisa - Good luck with your first chemo tomorrow, I hope it all goes really well and your side effects are few and easy to manage.  The scones sound yummy! Something to look forward to on chemo days - just what we all need.

 Thinking ahead to chemo - I did some online shopping for head gear today (some scarves) and a friend of mine made me a knitted hat and wants to make more. Because scarves are something I haven't worn before I think it's more difficult to shop online -(I've got an idea what a shirt would look like, etc) I did also order a couple fleece hats.  Just a tip - check out the sale/clearance at places like Land's End/LLBean if looking for cheap winter hats. I found a couple for under $3.97  I'm sure part of it is that I don't want to be looking for stuff to cover my upcoming bald head - I'd prefer my own hair to be covering it 

I received a letter in the mail yesterday that the Board of Education at my school has approved my medical leave of absence for "approximately the 2013-2014 school year".  I don't get paid after I use all my sick days, but I keep my same job so I can go back when I'm ready.  I love that it's flexible - could be until spring if all goes well after chemo and radiation but if I need the whole school year and to return next September that is an option as well. 

poodle_mum

So we finally have some good news.  Went in to see the surgeon - I must say I'm grateful all the nerves were cut in the area and that I have no sensation there :-) 

He said it wasn't infected but the problem was that the skin on the top was dead and the healthy skin inside was fine (but the dead skin was closing over the hole not allowing it to heal). So, he cut and scraped off all the outside skin to the point where it was bleeding - nice big open hole but to be honest - it looks so nice compared to before.

I've had a decubitus ulcer before so open wounds don't really bother me. That one took 4 years to heal and ate through part of my muscle - ended up being 4"x6" and 2" deep.  That's why I'm on the ball with this - I know what something small can become.

I told him on Monday, I know some might think I'm paranoid, but there was something definitely wrong.  So anyway, when I saw him I told him he was probably as tired of seeing me as I was of him.  And he told me not at all.  For the first time in 3 months the man actually had a conversation with me.  He actually has a vocabulary of more than a dozen words!!! LOL  In any case, he asked me who had been putting the dressings on this week and I told him my girlfriend and I.  He said, oh, you do it so well, I guess you don't need nursing care.  I told him, nope, but if you guys could supply the dressings and everything I need, I'd really appreciate it.  So even though the nurse was supposed to give me 14 days supply, she gave me 10 which is fine because I still have some of my own here. 

I guess knowledge of wounds related to spinal cord injuries come in handy when you have something like this - I refused to accept that nature would take its course. 

Apparently the therapy is going well - looks like it's really helping everything heal.  The right side is swollen but because there's been no drainage and I have almost full sensation in that area (only a small section that I don't), the seroma (accordion) will probably re-absorb.  There is one stitch still holding the one area together even after all this time so that's a good thing.  If it pops, well, then I'll cross that bridge if it comes.

So change the dressings everyday - continue therapy twice daily and I go back in two weeks.

Congrats to those who have made it through your first round of chemo.  Pam - great news for work.  Lisa, keep your chin up, everything will go fine.  Wrenn - thinking of you and looking forward to hearing what the next step is for you and praying it all comes together.

Jtrosesav

Hi everyone, I haven't been in touch for awhile. Got my second fill Monday and graduated out of the surgical bra to any bra I want! Got my Oncotype numbers from my oncologist today. One was 7 and one was 25. She told me that it's my call to do chemo or not. The 10 year distant recurrence rate with the 25 is 16% and she said chemo would reduce that to about 10%. So I'm doing my research and taking about a week to make my decision. Of course I'd be interested in others of you who had the Oncotype test, what your numbers were, and what decision you made and why. She said that due to my good health and slim shape, I should get through it easier. The regimen would be Taxotere/Cytoxan x 4. If I did it, I could continue getting my fills and my permanent implant and then my oophorectomy. Meanwhile I need to have a colonoscopy and she'd want me to do that prior to chemo. I feel thankfully about 90% recovered from the bilateral mastectomy I had on Aug. 26! If you have any input or experience to share,, feel free to respond to this post or pm me. Thanks.

LiLi1964

KBeee – yes, I am being treated thru UW Madison.  A very well respected facility in the country and I’m glad I have them as my team!  

The scones are so yummy there – I had read “do something special for yourself on your chemo treatment day” and since I’ve no clue how I’ll feel and therefore, don’t know if I’ll want to “go out for dinner” or “go someplace special” so I figured…..I love the scones at the UW – there’s my treat for chemo days!  And it works out great because it should help settle my stomach should nausea creep in and attack me.  Just no way to know how I will be affected.

I’ve been reading that many women find they eat anything and everything because of the steroids – did you have any effect like that?  I’m HOPING I do….I want so bad to gain some of my lost weight.  I told my MO the last visit I’m probably one of the only women who looks forward to weight gain.  Even if I just put on 15 pounds, I’d be happy – like you I just don’t want to lose any! 

Pam – there’s also a good site; www.scarfand.com that had really nice scarves at very reasonable prices; I paid less than $10 for each scarf and got free shipping.  I purchased a few from them and also found some nice, inexpensive ones at Amazon.  Please make sure you keep in mind that the size does NOT matter.  You can YouTube scarf tying and get all sorts of hints on how to tie difference size scarves in different ways – VERY USEFUL to watch videos.  Also bought caps for less than $4 at Amazon and 5 hats (all under $10).  I think I’ll be wearing the hats more than everything else….but who knows?  I might love the wig so much that I may wear that the most – we’ll just have to see. 

I’m happy for you to have received word that your job is safe!  That’s great news! 

Poodle-mum – so glad you got your issues “resolved” w/your BS.  See, we all told you not to worry about “bothering” him; that’s what he’s there for!  It still sounds very difficult to me, but I’m a wus.  It’s good you’ve had enough medical issues in the past to make this easier for you – too bad you’ve had those issues but it seemed to have prepared you for the issues you are now facing. 

Aviva – glad you have a sleep schedule and are able to rest!  Doesn’t it feel great to sleep! 

Wrenn – I’m thinking of you!  I hope we hear from you soon and the news is that you are well on your way to a full recovery! 

I know my EKG results were done yesterday; the technician told me it would be read by the cardiologist and electronically sent immediately to my PCP.  Well, since my clinics Dr and PAC are both out of town for a seminar, apparently the “fill-in” Dr didn’t see a need to forward the results to me.  GRRRRR!  Well, I guess I’ll find out that and the PET Scan results soon enough; appt w/MO tomorrow morning at 8:50 to be immediately followed by chemo.  So, I guess I’ll have an informative day. 

Still nervous but now I’m more of the frame of mind of “let’s get this going and get the first-time over and done with”.  I got a good quote from a lovely lady at another thread;   Don't wait for the storm to pass rather learn to dance in the rain.  Good thought and I’ll focus on that afterwards…instead of worrying about what, if any, SE’s are going to hit…I’ll focus on “dancing” along with whatever comes. 

I’ve told my employer I prefer to not come in on Friday – not knowing how I will feel and if I’m sick to my stomach (and so toxic from the Adriamycin) it’s best I not be sharing a bathroom with other employees and the public.  I’ve no interest in sanitizing a public toilet afterward if I do throw up!  So he agreed it was best I take the first couple treatments and stay home the Friday following just to be safe for everyone.  If I find I’m not dealing w/feeling sick to my stomach or if it is well controlled w/medications, then I can resume my Friday work schedule. 

That’s it from here.  I’ll post again tomorrow if I’m up for it – if not tomorrow I’ll let you all know just as soon as I can. 

As always, my thoughts and prayers are with each of you!  Have a good night!