August 2013 Surgeries

poodle_mum

Finished the walk - I actually did 2k :-) I wanted to see how far I could go but only made it an extra 500m more (about 4 blocks), I saw that corner and kept going until I got to it and then turned around and headed back. Ironically, I was in my power chair but I was toast at that point - I was in pain shortly after arriving but I made it through being out for a total of 4 hours. Might not sound like much but since this was my first outing, it sure was a lot. My Mum managed to do 1.5k (not bad for being 73 and not a walker!). She was so proud - my heavens, I don't think there's anyone she saw that she didn't tell my life story to! LOL

We got our big stickers to write who we were walking for. So she had hers on the back of her coat with my name and "my daughter" underneath. Mine said "Me!" and I put it on the side bag of my chair. On my return trip one of the runners, patted my shoulder. That felt so nice. My service dog walked beside me and on his harness we put one of the stickers and wrote "Mummy" on it. That got a lot of smiles and I was proud to have my poodle at my side.

It was so nice to see people cheering everyone through the walk. There were a number of survivors there and a special booth where we could have coffee and cookies, get fingernails painted - but I was in too much pain to enjoy that :-( Some people couldn't believe I was out there so soon after surgery. It was spitting rain the whole walk - nothing big so I put a raincoat over my legs and tried to keep bundled with my sweatshirt and coat.

I also got some more donations after my post yesterday - grand total???

$1,005 !!!!!!!!!!!!!!!!!!!

Every ounce of pain was worth it to raise that much money :-) I did it especially for the August Girls Club :-D

wrenn

Wow, Fantastic. Congratulations. Your mom must be so proud. I hope you will have a nice long rest now. Thank you for doing this for us all. xo

babs6287

poodle mum

We're all so proud of you and your mom. Way to go!!!!! Now rest up!

Babs

Jo6202

Poodle Mum,

Thanks for your and your mom's effort and of course your service dog ( name?). I was out in the rain yesterday too at a fall festival that supports women's programs in our county. It was held out in a muddy field and we had to walk about ten blocks to get there. My boob is revolting today! But it was great to be out with hundreds of caring women.

poodle_mum

His name is Dayton but we also call him Jr.

I'm off to sleep now - I think I'll sleep for a week - oops, forgot, back to the doc on Wednesday. My one week without doctors has passed.

Jo6202

poodle mum, Sleep hard my friend and hugs to Dayton :-)

LiLi1964

Great job, Poodle-Mum! And thank you again for your dedication - truly an inspiration! Thank your mother as well, and Dayton, too!

You've earned this rest so I hope you enjoy it. It had to be very difficult to be out there with all your recovery issues so I hope your pain stays at bay to allow you the well deserved rest.

Sleep, well and God Bless you, Poodle-mum!

LiLi1964

Question to those w/port who've had chemo (also who have not yet started chemo)-

I just read something about a terrible chemical taste that happens when they remove the needle from your port following chemo - like a really terrible chemical taste that sticks in your mouth.

OK - what's up with that? I never heard it mentioned anywhere online until today but apparently this person puts together care packages for chemo patients and includes very strong breath mints for the patients to suck on when the needle is removed because of this issue. So I wonder if any of you had that happen and if mints helped.

I'm starting chemo this week with my newest implant (perhaps or perhaps not) - my port - and I'll pick up some Altoids to shove in my mouth before they remove the needle if this is actually true. Yes, I'm on an anxiety roller-coaster w/port issue, again, because I read on Friday night that sometimes they're in the neck. Sorry - no flippin way - nothings going in my neck. Chest...don't like the idea of it being cut into again but I'll deal with that but the neck....not happening.

I'm fully prepared to sit up in the OR and announce to every person in the room before they knock me out "no port in the neck! if it can't be placed in the chest then no port gets placed anywhere". Seriously - good God in Heaven, no one ever said anything about that and it is really freaking me out. I know I sound like a basket case sometimes, I'm really not. Anxious....yeah, I'll admit I do get anxious when I find out something that is different than what I've read about or what others have experienced. And if the doctors figure to just conveniently not mention that little fact - well that doesn't sit well with me and yes, brings on a bit of anxiety.

So I reaching out for some info here - did any of you end up w/a port in the neck or the tube running from your port up your neck? I'm incredibly thin and I have no desire to see a tube running up my neck just under the skin (and I'll see it - I am that thin) - and I can just hear doctors explanation now "well you're so thin that we had to put it in the neck....". Good thing I read about it beforehand so they don't get that opportunity! Seriously, my husband and I can see the TE's in the upper part of my chest - so I know a tube will be visible in my skinny neck. I can handle it if it's in my chest because I'm not seeing that when I look in the mirror but my neck is always visible.

Help! Why is this all so horrific w/so many differences on how things are done? Port in chest - that's what I thought was what everyone was talking about in what I've read online so now I wonder if that part of the surgery will even happen. I'm not getting anything in my neck.......

babs6287

Lisa

I had my port in my chest and I too am very thin. I don't know anyone who had it in the neck. I never had that bad chemical taste due to the needle. I did have a metallic taste when eating some foods due to chemo.

My BS put the port in so that I could still wear v necks and halter neck tops which I love-the scar is really not bad at all. Talk to your BS to discuss placement so you don't obsess.

Deep breaths!!!

Babs

LiLi1964

Yes, Babs. I'm preparing a message for my surgeon as we speak. I forget which cancer forum I ended up at when I googled "port placement" but there were a bunch that had the catheter running up their neck to their carotoid artery (gross!). Then I ended up somewhere else where women actually ended up with the port in their neck (that's what they said).

All the ones w/catheter running up the neck seemed to have had horrible pain for many days following placement. Many women stated it was worse pain than the mastectomy - hence my anxiousness.

I don't have many(any) clothes that go up very far on the chest. Mostly cami's and tanks. So I know there is a possibility the port may be seen on the chest (oh well - nobody but my husband should be looking at my chest anyway!) but I can deal with that. I've prepared myself mentally for that. But the neck - isn't that gross to you? Yuck!!!!!

Thanks, once again, for your calmness! And thanks for your experience w/no icky taste in mouth (might that be from chewing ice, too? which I'm going to do as it seems to have helped many here that I've read about).

babs6287

Yes, having the port in the neck does sound gross. I did chew on ice during chemo treatments. FYI- I never iced my head or hands. Actually I didn't know about that until after I finished my chemo. But honestly, I don't think I would have tried that anyway-too cold!

Babs

LiLi1964

I feel the same. It may work for some but I get too cold too easy. Chewing ice will make me chilly enough.

Message has been electronically sent to surgeon. I've explained my anxiety, what I've read, and asked for assurance that neither port or catheter will be in my neck. Hopefully tomorrow I'll get that assurance.

You know, it must have been at that site where I was reading of the women w/catheters up their necks that were talking about the horrible chemical taste in the mouth when needle was removed following chemo. I guess I might understand that.?? With catheter right there in the neck I could see an easier reason for that taste than w/a catheter in the chest.

LiLi1964

Babs - actually that horrible taste in the mouth when needle is removed is being discussed at the October 2013 Chemo thread......(I've been all over the internet tonight looking at port info and nutritional hints while on chemo I couldn't remember it was at this forum that I read that).

Too much time at the computer so I'm off to bed!

wrenn

i hope you get some reassurance tomorrow Lisa. The unknowns with this stuff are scary as hell. I don't blame you for being anxious. Have a good sleep and hopefully you will hear from surgeon early.

honeybair

Lisa... the very quick sensation of taste that you will get when your chemo is completed each time is from the heparin flush which will keep clots from forming.It is over in an instant and you will not need mints because the sensation will pass as quickly as it came. You are suffering from anxiety about the unknown as I did before my port placement and before my chemo began. Anxiety may be too gentle of a word to use. Downright fear is what I felt and it proved worse than the actual chemo experience for me. Still, I won't try to kid you. Chemo will make you feel really bad and tired, but it is doable. Also, remember, each person who undergoes it will have different side effects, and no one will get all of what they tell you is possible to develop. I was vigilant about drinking lots of ice water and rinsing often with my baking soda-salt combo to avoid sores in my mouth. The chemo war is tough on the body, the spirit and the mind. I still see my chemo nurses every three weeks because I receive Herceptin through that much dreaded port. But they were wonderful, competent, and caring and I look forward to seeing them now.

Your skin will become dry, most likely and will remain that way after chemo, so I advise using lots of Aquaphor on your hands and body. My previously oily hair and complexion are no more. That oily skin has kept me wrinkle-free, so I do miss that benefit.

Hope my words will be of comfort to you and i wish you well.

jbdayton

Wow, I also had neo-adjuvant chemo and a port. My port was placed in my chest and the surgeon made sure it was to the side of my normal bra strap for comfort. It was visible with wide neck lines but was able to cover it with most v-necks. The incision is barely visible 6 weeks out from removal. I could feel the tube, it went upwards and then turned downward toward the heart but I don't think it will be visible. I would definitely do the port again.

I did not have the metal taste as the needle was removed, but do agree I had a metal taste sometimes during the infusion. I had TAC chemo.

I chewed shaved ice during my treatments and rinsed my mouth several times a day with both the magic mouthwash and the baking soda mixture. I did avoid mouth sores but had thrush and a very tender and sometimes raw tongue. I would totally lose taste of most foods for several days during the first few treatments and for a week or more in the later treatments. I did not ice my fingers or toes. I do still have some minor neuropathy in my fingers and toes up to the first joint. I am finally starting to feel some improvement. It has not prevented me from doing anything I want to do. I am 3 months out from last infusion.

A good thing is my hair is very thick and about a half inch long now.

When things start returning to normal it is easier to say chemo is doable. I kept a smile on my face throughout the whole process and it made it better even with the side effects. They do pass and you will feel better quicker than you think at the time.

Good luck to all starting this adventure. My prayers will be with you. I will be starting rads in the next week or so my mapping has been done.

Hope everyone has a great week as they pursue each step of this journey.

Hugs to all.

KBeee

jbdayton, thanks for the words from someone who has so recently been there! So great to hear about the hair growth.

Poodlemum: awesome job with the walk and fundraising.

Lisa, I hope all goes well with the port placement. Each step done is one step closer to the finish. You will do great.

This is a crazy busy week at work for me...huge event I am organizing for Wednesday night. It will make the week go really fast before chemo#2. It is a busy week, but it is nice to have it feel a little "normal" for once. I also like being there because no one treats me like a "cancer patient." They treat me like me. I also have been getting out to walk and run. I am doing the local Race for the Cure, which is on Oct 26. I am not a big fundraiser, but I do have several people doing it with me, which should be fun. I am hoping I feel as good this round so I can run it. I have worked hard these past couple weeks since chemo began to get in shape.

LiLi1964

Honeybair - thank you for your honesty and suggestions. I'm actually less worried about chemo than most - it's a journey I must take so I'll take it with a positive attitude. I think attitude has a lot to do with how you tolerate what comes your way but there's no person who can tell a chemo patient "attitude is everything" (and people have said that to me). These are harsh chemicals that our bodies don't like and there will be side effects no matter how positive our attitude is. That being said, I also don't fear that all these side effects will happen to me. In fact, I'm wondering if perhaps my headaches will be better (that will really throw a wrench at all the Neurologists who misdiagnosed my headaches for nearly 10 years) and wondering if my psoriasis might lessen or clear. I took Methotrexate years ago (a chemo drug) because it's known to clear psoriasis - and it did. So who knows? I'll take what comes my way and reach out to my doctors to help with anything that is bothersome or worrisome. And, of course, I have you great ladies to come crying to for suggestions and support when I need it along the way. It's that simple.

Can you please give me your recipe for baking soda and salt mouthwash? I'd love to have that little trick and use it (I really don't want mouth sores, they sound terrible). Do you know if there is anything to avoid thrush? I don't particularly care for Aquafor - used it in the past for psoriasis and hangnails on my hands at night and it never helped. Do you have something else to suggest? Or is there something I should NOT use?

And yes, I do take great comfort in your words, so thank you again!

Are you still sleeping well? In bed? I hope so!!!!

Jeannine - yesterday morning a nurse called me from BS and said it was indeed THEIR INTENTION TO PUT THE CATHETER UP MY NECK!!!! I never met this nurse and told her I wanted the nurse I sent my message to to call me today - that nurse that called yesterday actually thought she was reassuring me - can you believe that? I got a call for the correct nurse today (the one I've dealt with on everything) and she said to me "I've never placed a port and catheter so I think it best if you speak w/BS" and she had him call me a short time later. HE told me that the port will be placed in the upper chest area just below the collar bone. The catheter will be run up to the lowest portion of the neck and inserted into the jugular vein, and then swung over to the heart. I said "thank you - that eases my mind tremendously". He said it was unfortunate that all the doctors on my medical team were having many discussions about my surgery but nobody really clued me in to HOW the surgery would be done - and because they snuck me in when they could (for surgery) and know I don't want any more time off work than I've already lost (and will lose recovering from surgery) I never had an appointment to get into see him so he could explain it all to me. I feel so much better now! He apologized that nobody actually went thru the procedure with me and was sorry for any undue stress it put on me. He is really a very nice man - sometimes "poo poos" my complaints....but he does listen. I just might not have taken into consideration that when I'm explaining something to him and I'm in pain - my pain tends to rule my head and common sense sometimes gets pushed to the side - something I need to work on. And according to every other doctor on my team, they all tell me how very lucky I am with this BS - he's known as one of the best in this area. And I am thankful (sometimes I don't sound it but I am).

Oh, and I'm not worried about the scar. I've got 2 very large slashes across my chest and 2 in the front of each underarm that are clearly visible when I look in the mirror. The port scar is of no concern. At this point, all I say about scarring is "whatever". To me they're just battle wounds and my chest will never be some pretty picture so what's one more scar (and a small one at that)?

I'd like your magic mouthwash recipe as well - and do you know if there is anything to prevent thrush? If you had it, you'd be the one to know if it can be avoided. But if not, what do you do once you get it to get rid of it? And is that the "white ick" I hear women talk about?

You hair sounds great! 3 months and 1/2 inch already! I've read women at 7 months post chemo w/hair only at that length so it sounds like you're doing very well in that arena.

Yep, your comment about a smile on your face during it all is my aim. I know it will be tough at times and other times may be downright impossible, but it's still my goal. Your story proves to me that it does make it easier so thank you for sharing!

I know so little about radiation - I don't know what you mean by "mapping" - what's that? I know what mapping is for sentinel node biopsy but have no clue what it has to do with radiation.

Thank you as well, Jeannine, for your kind words!

Wrenn - as you can see by what I've written, I had no reassurances yesterday. But it came today so....better late than never! At least I now know what to expect.

How are you feeling? How is recovery coming along?

KBeee - thanks for your reassurance. And I love how you always put it so plainly - one down and one step closer to being done. I only hope I can have that same attitude should I be hit and feel poorly w/SE's!

So happy you feel "normal" keeping busy w/your organizing the event and not being treated as a "cancer patient". I think, when I left work for surgery and only a few people even knew what was going on in my life, I asked one of the owners to mention it at the next employee meeting. I told him "I don't want to come back after surgery and recovery and have everyone asking me where I was and how I'm doing and on and on". He did and everyone has respected my privacy on the matter and knew when I returned I just wanted to be the same ole Lisa I always was - didn't want to be "that cancer patient" - like you said. So I've been very fortunate in that regard. When is chemo 2? I'm thinking it's this week, isn't it?

I have to say, as well, that you are an inspiration to us all. You are so active! And you are not letting anything w/chemo get in your way - I hope to have even a itty bitty likeness to you in that regard after my "first time". I've been told to get out and go for a walk even if I'm insanely fatigued because it's been known to make you feel better; but I'm lazy! I know myself and I don't see it happening but when I read how active you have stayed....I'm going to try to push myself and get out for a walk every day. At least the weather has cooled so it will be nice to get out of the house and enjoy the weather before the snow starts flying! You did notice I said "try"??.......

To Everyone - I swear....you ladies are really so much help and such a comfort to me. I'd be lost without you so thank you to all!!! I feel very fortunate to have had my surgery in August - otherwise I would never have "met" any of you (and that would be a shame!).

As always, my thoughts are with all of you and will continue to keep each one of you in my prayers.

wrenn

Lisa, I'm glad you got some reassurance and I hope it goes smoothly without pain. You have a good attitude for all the unknowns and changes that have come about.

I saw the surgeon today and he thinks chemo should be delayed at least 2 weeks for my wound to heal. I see the oncologist tomorrow morning and hope he goes along with this. If he does I intend to spend the 2 weeks focusing on getting a handle on anxiety and will try to think healthy thoughts.

I'll be thinking of you guys who are doing chemo tomorrow and sending calm and no SE thoughts to you all.

KBeee

Lisa, I am so glad that you got some clarification! I hope all goes well with the procedure.

Wrenn, I am glad that he thinks you should wait 2 weeks to heal. Hopefully the MO agrees; It would be crazy for him t=not too since they worry so much about infection.

My theory with the stress of chemo was that I was not going to worry about what COULD come, I was just going to deal with what DOES come. That is much easier since most of the side effects listed do not happen to the majority of people. I also read about 100 blogs between the time I was diagnosed and the time of my surgery and the one thing I gathered from them was the importance of activity. That is why I told my self no matter how busy I am or how rotten I feel, I was going to at least walk. It has helped me immensely. I like to listen to music, so pretty much get lost in my music on my walks. I always feel better after my walk than before. I hadn't intended on running; it just kind of morphed into that one day when I felt really good!

Jo6202

Wrenn,

I'm on hold until at least Oct. 24th. Hope to just continue to heal and try to gain some strength back so I'm ready for what they throw at me next. Wishing you healing and time to relax.

wrenn

thanks guys for helping me to not feel alone in this. Jo I hope your health issues are resolving and that things are going ok for you. Maybe we will finally get to start chemo this month. Take care of yourself xo

jbdayton

Wrenn and Jo I wish you peace and good thoughts while you continue to recover from your healing issues. I don't know what it would have done to my spirits with this kind of set back. That being said, please take care and get as refreshed as you can before starting. We are all pulling for you.

KBeee your thoughts about not worrying about what COULD happen and deal with what DOES happen is a great way to approach this. I was prepared for many issues that could arise and then only had to deal with my bodies reactions. The onco team is so helpful when you do incur a problem let them know and they will have a solution or remedy to help. The onco nurses I dealt with were very knowledgeable.

Lisa - thank you for your responses. I could not get my thrush to actually clear up. It is the white yucky stuff on the tongue. Your MO can best advise you. I used Nystatin for topical treatments and did not clear it up quickly but did ease the problem and prevented it from spreading to my throat. I remember seeing some said to use L-Glutamine but check with your onc team first.

For pain relief I made the "magic mouthwash". It can be ordered through the pharmacy many different formulas are available or a version can be made at home. I told him I was already using home version so he prescribed some lydocaine that I could add for pain relief. I used 1 part Maalox (I used Walgreens Liquid Antacid), 1 part liquid benadryll, 1 part children's advil and 5 drops of lydocaine. Mix it all together and swish for several minutes and spit out. I only added the lydocaine when I needed it. It will numb your mouth and throat. You might check if a prescription would be more cost effective if you have good drug insurance. It would have been cheaper for me but I had already bought the products.

The standard baking soda and salt water mix is 1/4 tsp baking soda, 1/8 tsp salt and 1 cup warm water. Swish several times a day especially following a meal. I actually did this about 6 times a day.

As far as radiation mapping in layman terms; it is where they draw lines on your chest to line up the placement of the lasers and I received 3 pin dot tattoos. Next they did a scan that went for review to the rad team. Yesterday I went back in for a simulation run, a run with lasers but no radiation and x-rays were taken to verify the proper areas were to receive the actual radiation. I will go live for my first treatment today.

As always my prayers are with everyone.

honeybair

Lisa, don't know if you have seen your oncologist yet, but my care instructions were given to me in a huge packet of info which included the instructions on mixing the baking soda/salt . I have forgotten the exact ratio. There is also a mouthwash called Biotene that many people on the chemo forums used. I just stuck with the baking soda/salt mixture and never got sores in my mouth. Thrush was never a problem either. I did not catch a cold or get any other illnesses last winter. To safeguard my health I always wore a medical mask in public, and always used gel after touching anything in public. Most people probably would not go to the extremes that I did to stay well, but I did not eat in restaurants. We ordered take-out. I also gave up going to church and all outside social activities. I did not want to be hospitalized or forced to skip my chemo. My family doctor's nurse advised me to always wear a mask when visiting that office because as we all know, upper respiratory illnesses are much worse during cold weather. I just accepted the fact that my life would have to change for the duration of chemo so that I could get restored back to good health.

I have rosacea, and while on chemo it cleared completely without having to use my meds for it. That was a very pleasant unexpected side effect.

Aquaphor is used only on my hands each night before I go to bed. For my body I use Eucerin intense repair lotion unscented. You will find that your sense of smell will become altered and you will detest the smell of many foods and almost any other item with fragrance. At least that was my experience.

Now when people tell me how great I look, I reply by saying"a little poison never hurt anyone."

Wishing you and everyone else who will undergo chemo the best possible outcome and minimal side effects. My prayers are with all of you daily.

LiLi1964

Honeybair and Jeannine – thank you for your mouthwash info!

I did in fact get info when I first met w/my MO – but I do not see the “magic mouthwash” recipe in it (and it is an actual binder of approx 100 pages!).I do, in fact, have very good drug coverage so I’ll probably go with the prescription version.But if it does not work very well, I now have the home-made version.With all drug versions of “healing what ails you”…. we have found in our household that often times the home-made remedies work faster and more effectively.So, I now have that “little ace in the hole” should I need it.Thanks, Ladies!!!!!

I was wondering why I wasn’t seeing the recipe for the mouthwash but instead kept reading at many threads about “magic mouthwash” and was wondering “what the heck – what is that and why is nobody writing out what it is?” – makes sense if it is often given in the form of prescription.I know so little, but learn much for you brave women who have gone before me.

I am in full agreement w/KBeee and the 2 of you – I am pretty well versed on what SE’s CAN happen but since I’ve no clue if I will sail thru this w/only minor inconveniences or be hit hard and be knocked on my bum……I’m just going to go with the flow and see how I’m affected.With a positive attitude; and with the knowledge that there are many women who HAVE gotten thru chemo w/only minor issues and I may be one of the lucky.I’m informed and prepared for the worst (as prepared as one could be, I guess) but not concerned about what might happen.I’m not wasting energy worrying about things that might not happen; I deal with what comes my way when whatever comes my way.

Surgery today sucked.I was there from 7:00 until 2:00 – very long day!And, yes, quite a bit of pain.Well, that was expected.But I’m really happy I got a port!I had some issues w/IV in the hospital after BMX (backed up and then hours later started leaking and I thought it was just a fluke circumstance) but then this morning they had a difficult time getting IV set.Took one nurse 3 tries (might I add it was really, horribly painful w/all the digging!!!!) and she had to call another nurse to get it placed.He got it – took him a bit but he got it – but it hurt the entire time it was in.So perhaps my veins are not as healthy as they had been all my life.I can tell you after the BMX IV issues and now today, I’m so very thankful I opted for a port because I certainly would not want to go thru the horror of this morning each time I have chemo w/them trying to get the IV placed!

Sounds like I may not get pathology back on the removed node until early next week.If that node is cancerous, I don’t know what that will mean.I didn’t think to ask.I don’t know if they’ll do another PET scan right away if to see if the underarm is still lighting up (meaning there’s likely more cancer still there).I would guess they would; well they’d probably wait for surgery inflammation to go down first…….so they know if they need to do an ALND after chemo – I just don’t know.Best put that on my list of questions for MO tomorrow morning!Any of you ladies have this issue?And if so, what did they do?

Jeannine – hope your radiation went well today!Oh, and it’s good to finally know what that “white icky” is!I kept reading it and wondering what it was……

Wrenn – hope your MO visit went well today and there is total agreement among all parties to wait the 2 weeks so you can heal a little further before moving on to next step.

Honeybair – see, there are strange, GOOD things that can happen w/chemo.Who knows….???We all have to just wait and see if something unexpected happens to each of us that clears up a completely separate medical issue.

Other than work, I totally plan to stay away from crowds!I have an insane amount of hand sanitizer already on hand for at work (which will no doubt dry out my hands!) so I say the better we can protect ourselves…the better!!!!Being that I’ve tried just about every moisturizer out there with my psoriasis condition, I think I’ll stay w/my Amlactin.It’s a good product, no fragrance, and is one of the best I’ve found.It’s actually what professional swimmers use because the chlorine dries out their skin so bad (it’s really a good product – if anyone is interested look into it.)

Babs – are you still feeling well after your first fill?Can I give you a little advice?I don’t know if they would do it with you but I had 50cc’s my first fill, too.This last time….100cc’s in each and it was very painful for about 48 hours.Like, totally unexpected pain.Because like yourself, the first fill went very well (had discomfort for first 24 hours but not pain in any way).And the nurse kept asking, and I was paying very close attention, if any discomfort happened during the 100cc fills and nothing – I felt fine.But a couple hours later – WOW, spasms kicked in like nobody’s business!Right side was worse and the right upper back was the biggest area of pain.So if you can go “low and slow” you might want to do that.You know, why am I telling you this?You work for a Plastic Surgeon, right?So you know all this anyway!Sorry, forgot about that, I’ll shut up now.

I hope everyone has a good evening.As always, I keep each of you in my thoughts and prayers!

LiLi1964

Honeybair and Jeannine – thank you for your mouthwash info!

I did in fact get info when I first met w/my MO – but I do not see the "magic mouthwash" recipe in it (and it is an actual binder of approx 100 pages!).I do, in fact, have very good drug coverage so I’ll probably go with the prescription version.But if it does not work very well, I now have the home-made version.With all drug versions of "healing what ails you"…. we have found in our household that often times the home-made remedies work faster and more effectively.So, I now have that "little ace in the hole" should I need it.Thanks, Ladies!!!!!

I was wondering why I wasn’t seeing the recipe for the mouthwash but instead kept reading at many threads about "magic mouthwash" and was wondering "what the heck – what is that and why is nobody writing out what it is?" – makes sense if it is often given in the form of prescription.I know so little, but learn much for you brave women who have gone before me.

I am in full agreement w/KBeee and the 2 of you – I am pretty well versed on what SE’s CAN happen but since I’ve no clue if I will sail thru this w/only minor inconveniences or be hit hard and be knocked on my bum……I’m just going to go with the flow and see how I’m affected.With a positive attitude; and with the knowledge that there are many women who HAVE gotten thru chemo w/only minor issues and I may be one of the lucky.I’m informed and prepared for the worst (as prepared as one could be, I guess) but not concerned about what might happen.I’m not wasting energy worrying about things that might not happen; I deal with what comes my way when whatever comes my way.

Surgery today sucked.I was there from 7:00 until 2:00 – very long day!And, yes, quite a bit of pain.Well, that was expected.But I’m really happy I got a port!I had some issues w/IV in the hospital after BMX (backed up and then hours later started leaking and I thought it was just a fluke circumstance) but then this morning they had a difficult time getting IV set.Took one nurse 3 tries (might I add it was really, horribly painful w/all the digging!!!!) and she had to call another nurse to get it placed.He got it – took him a bit but he got it – but it hurt the entire time it was in.So perhaps my veins are not as healthy as they had been all my life.I can tell you after the BMX IV issues and now today, I’m so very thankful I opted for a port because I certainly would not want to go thru the horror of this morning each time I have chemo w/them trying to get the IV placed!

Sounds like I may not get pathology back on the removed node until early next week.If that node is cancerous, I don’t know what that will mean.I didn’t think to ask.I don’t know if they’ll do another PET scan right away if to see if the underarm is still lighting up (meaning there’s likely more cancer still there).I would guess they would; well they’d probably wait for surgery inflammation to go down first…….so they know if they need to do an ALND after chemo – I just don’t know.Best put that on my list of questions for MO tomorrow morning!Any of you ladies have this issue?And if so, what did they do?

Jeannine – hope your radiation went well today!Oh, and it’s good to finally know what that "white icky" is!I kept reading it and wondering what it was……

Wrenn – hope your MO visit went well today and there is total agreement among all parties to wait the 2 weeks so you can heal a little further before moving on to next step.

Honeybair – see, there are strange, GOOD things that can happen w/chemo.Who knows….???We all have to just wait and see if something unexpected happens to each of us that clears up a completely separate medical issue.

Other than work, I totally plan to stay away from crowds!I have an insane amount of hand sanitizer already on hand for at work (which will no doubt dry out my hands!) so I say the better we can protect ourselves…the better!!!!Being that I’ve tried just about every moisturizer out there with my psoriasis condition, I think I’ll stay w/my Amlactin.It’s a good product, no fragrance, and is one of the best I’ve found.It’s actually what professional swimmers use because the chlorine dries out their skin so bad (it’s really a good product – if anyone is interested look into it.)

Babs – are you still feeling well after your first fill?Can I give you a little advice?I don’t know if they would do it with you but I had 50cc’s my first fill, too.This last time….100cc’s in each and it was very painful for about 48 hours.Like, totally unexpected pain.Because like yourself, the first fill went very well (had discomfort for first 24 hours but not pain in any way).And the nurse kept asking, and I was paying very close attention, if any discomfort happened during the 100cc fills and nothing – I felt fine.But a couple hours later – WOW, spasms kicked in like nobody’s business!Right side was worse and the right upper back was the biggest area of pain.So if you can go "low and slow" you might want to do that.You know, why am I telling you this?You work for a Plastic Surgeon, right?So you know all this anyway!Sorry, forgot about that, I’ll shut up now.

I hope everyone has a good evening.As always, I keep each of you in my thoughts and prayers!

chimamamia

Hi All,

What am amazing group of women! I am reading your posts and am hugely relieved to see so many women in the same seat feeling the same way.

I wanted to add a note about port scars - they fade. I have 4 ports scars from leukemia treatment 10 years ago and they are blending with my skin tone (fair with freckles) now. Now I get a new one, oh joy. The PS said I will scar well...I asked what that and he said the scars will fade and blend. He's right, it just takes time. I also found that Bare Escentuals foundation covered scars when I felt I needed it.

Best to all.

chimamamia

Hi,

I know exactly what you mean by the tape burns. I am allergic to adhesive and get hives and welts from tape...often the reaction is worse than what the bandage covered. Would appreciate any advice or ideas about dealing with this.

Ren

babs6287

Lisa I don't work for a PS anymore and, when I did, the PS didn't do breast reconstruction- so this is all new to me as well. My PS wants to go low and slow on the fills since my left side had so much radiation. It will be 50 cc each time. (The PS did a full fill on the right side at the time of the TE)

I worked all through chemo-never missed a day! I never wore a mask at work but kept using the hand sanitizer. I chose not to go in close quarters with lots of strangers-so I avoided movie theaters and shows. We did go out for dinners with friends-my thinking was that I was only close to those we went with plus we needed some normalcy during this crazy time. I ate lots of protein, drank tons of water to flush the chemicals out of my body and didn't eat fruit-too hard to clean strawberries and raspberries and I stayed away from sushi and dairy products. I used biotin mouthwash just in case and never had any mouth issues so I guess that worked.

I actually found the radiation harder than chemo-it was very tiring for me. It could have been because it was just 3 weeks after chemo ended. Plus, I did radiation daily at 700 AM (in the cold of Jan-March) so I wouldn't be late for work(That meant I woke up and left an hour earlier than normal). The radiation itself just took minutes and you feel nothing. In between the chemo and radiation I took a trip to visit my parents in Florida and wore a mask on the flights to and from.

Wrenn-hoping you are getting better and stronger every day

Jdayton-how as the radiation treatment today. Use lots of aqua for in the AM and night to help prevent burning.

To all-have a good night !

Babs

LiLi1964

Babs - I must have mistaken what I thought you said previously. I thought when you came back from Fla you had an inspection or something and I thought you had said you managed a PS office. Sorry about that - my mistake.

I forgot about the radiation......I'm just obviously very forgetful this evening! Yes, that would make filling slow.....and I know I'm asking my PS to go back to that. The 100cc's was just too much and too painful. The 50cc's is easy and maybe a little uncomfortable but certainly nothing nearing pain (at least not for me) and that's what I want even if it takes longer.