2012 sisters

mcook301

Juneuabugg - I hope you are feeling a little better. I remember having two really shity days then start to feel good again right bf next dose. It seemed for me it got to be a little of a routine and I got used to knowing what to expect which made it easier. The first few weeks I called my nurse every other day cause of some se. Most days I tried really hard to calm myself bf treatments so no stress bf I got there. Lots and lots of water! Walk if you can it can help flush some of those dam toxian out of your system. I ate bf and after. I kept asking my doc jokingly about medicinal wacky Tabaco thought what the heck only time in my life to try it:) It is not legal in mn but it was kind of joke between her and I. Actually funny story I have a close friend who is a doctor from hs and when she can to see me she brought me a little package but I was too scared to even try it so put in my cabinet where I keep my tea hidden. My mom came for a visit and was pulling stuff out of there and it fell on the floor. now my mom thinks I am a pot smoker and my step dad keeps asking me to sneak it to him:) still have it packed away cause to scared to get rid of it or give it away. all I need is to get throw. I. The slammer That would be my luck finish treatments in an orange jumpsuit. Ha!



Taxol has caused me to be very stiff in my joints three weeks ago and nurse said this is common but I feel like I am 80 instead of 42:( hopefully massages and when I can do yoga will help this. So now that dam wacky stuff is tempting cause this sucks in am.



Well hope everyone has a good days and handling se and that the are minimal! I am going to try and get away next weekend some where relaxing! Any suggestions for Midwest trip?



Love of love!

mcook301

Also thanks ladies on information on TE and experiences with what PS said. I wish I did not have to do rads!

Tazzy

Saying a quick hi to you all.   Busy weekend with DH and good friend on her way over to visit.  DH off golf later today so I will check in with you later.

Sorry Juneau you are having a shitty time... remember it passes - A/C made me feel as though I'd been hit by a truck and then it drove back over me.  But it only lasted a few days and before I knew it had some semblence of feeling normal.  hang in there darling - keep remembering, if its making you feel like shit imagine what it is doing to the cancer.

Mcook - no TE's for me - high % of recurrence so BS advised against recon for approx 1 year.  Plus 5 weeks rads once healed form surgery.

Thinking of you all.  Whatever you are doing today try and find some laughter and happiness through all this crap we are living.   Love you all and chat later xxx

Aruba

Juneaubug,  Hugs to you!  While I have not gotten the Onco test scores back yet so don't know if I will have to endure chemo yet, I do so feel for you. Know that the war within you is to KCA and that you will get through this with all the great sisters on this board to help you take one step at a time.  This disease is crap and no one here derserves to have to go though all that we do.  But knowing that you gave this your all is all one can ask of ourselves...and that you are doing 100%.  Hang in there!

jpmomof3

Good morning/afternoon all!



It's a beautiful day here, warm and sunny but the humidity dropped. Just got back from a 2.5 mile walk with my mom. The soreness is improving. The boob is still swollen but probably only 1.5 times the size of the other one now.



I am a sad that my mom will be leaving in 2 days. She has been living with us the last six months helping me out. It's been nice to have both the help and the company. She also got to really connect with her grandkids which was really great for her.



I guess that means I have progressed far enough to not need so much help. Though I still have a ways to go. Healing from surgery and then on to rads. I Have the worst behind me for sure. I can't help being impatient though to be done with this. I want to be more 'normal'. I don't know if I will really ever know what normal is like again but I will love to get to the point where I can lift things and go for a run.



Juneau that's a perfectly awful experience you had with the port. I couldn't imagine being awake for that. You made it and are a tough chick to be through it. I also feel your pain when you cant lie on either side to sleep comfortably. When I had my lumpectomy they took the port out and both sides were sore. My back ached by the time the morning came around. All this shit gets better though. I wish I had more patience too but that's really what we all need. I hate that this stuff is taking any of our good life away and replacing it with nausea and pain and sleepless nights but try to remember it is all temporary. We are fighting the fight. We don't have any choice anyway. Fuck cancer and all that comes with it.



My hair started falling out from the AC around day 20. As soon as the first strands came out I buzzed it to GI Jane level. The little stubs were itchy as they came out but not nearly as disturbing as pulling longer hairs out of my head and off my clothes and pillow or watching it clog the shower drain. we aren't in control of much with cancer but I decided when the hair went at least.



I agree wholeheartedly with Liefie, the steroids kept me awake for three days after treatments. By all means take a sleeping pill during those days, it really helped.



I found that salty and earthy type foods didn't lose their taste as much as most foods and caused less stomach upset. I reverted to my college diet of frequent meals of ramen soup or giant bowl of oatmeal. Fried eggs gave me some protein too.



Mcook, staying busy helped me too, to get through those days and weeks of anticipation of surgery. Less time to stress if your mind is occupied...



Tpoly and Juneau I wish there was an easy way to get through chemo. Just mark off the days, time doesn't stop even though it did feel like it slowed down a lot. It marches on and you are closer to being done with it every minute. Try to stay as busy as your symptoms allow you to be. And don't be afraid to try to do things even though they might feel too hard due to symptoms and fatigue. You will be surprised how much you can do when you try and it will make the time pass faster. People told me can't and shouldn't for a lot of things and I didn't listen for quite a few things. I got through it and so will you. None of us are superheroes which means that everyone can and will do it because we have to.



Kill cancer!

liefie

Jpmomof3, where would we be without our mothers? So glad she could help you and be there for you. My mom is in a care facility in another country very far away. She has a slow growing brain tumour, and is sinking fast. I was supposed to go and visit her in Feb. when she was still okay, but then cancer came knocking on my door, and I couldn't go. She does not even know about it, because it will be too much for her to hear. At the moment she does not recognize my siblings any more. It is so sad that she most probably won't know who I am when I see her in a few months' time.

The end is in sight for you. For me the rads was nothing compared to chemo. Some redness and itching towards the end, and that was it. I am one month post rads, and I am feeling so good. Had people over last night, and they were amazed at my energy level buzzing around in the kitchen, cooking and serving the meal, and then cleaning up. A few months ago I could not even make a simple salad without resting in between. . . . it does pass!

Blondie51

I am new to this site.  And so confused. I was first dx with DCIS. I had a lumpectomy where the BS found a 3mm tumor, so she told me that I am now IDC. Lymp Nodes were neg. And I had a bilaterial mastectomy.   BS said that I am now T1a with Her2+.  So things are changing and not sure that I understand everything.

Aimz

Hi Everyone.  You have all had so much going on this last week.  I was suppose to start rads last Tuesday, but my RO decided he wanted me to come in to be remapped, this time on my stomach.  The first time I was on my back.  My RO feels there will be little to no chance of the rads reaching my lung if I lay on my stomach.  Boy you talk about loosing all modesty.  Had to lay on the board with my boob hanging thru the cut out while my RO and 3 techs positioned and repositioned me.  I can only imagine what it must look like and to think I get to do that for the next 7+ weeks.  I also received a whole new set of tats and told my DH I now have enough to play connect the dots!  I also thought about having the techs give me "warning, headlights out of alignment" tat, but may have a t-shirt made instead.     Outside of my remapping I had close to "normal" week and I am thankful for that.  I am scheduled to start rads on Tuesday, so back to the "unnormal"!

Juneau, I'm sorry for what you had to go thru with the port.    

Liefie, sorry to hear about your mom and that you have been unable visit her. 

Blondie51, welcome to this site.  Sorry your dx has changed.  I am sure someone here will be able to help you.

KCA! 

tina_jason

I just got back from a weekend of camping.  The weather was perfect and the company was wonderful.  I of course had to take my wound vac with me.  I carry it everywhere!  Today is Day 5 of the wound vac!  I am tired of it but glad it is doing it job. 

jp- So glad you got a good path report! 

Tazzy- I found that when I went to the store with my wound vac the cart covered up the tubes so it really wasn't too bad!  Hope all is well with you.

Aruba- I will not complain when I think of your son having to take his to school.

More complications again.  A nurse showed up at my house Friday to change it and she said my insurance requires me to be homebound in order to have a nurse change my dressings at home.  I am a mother of two teenage boys, one who is starting daily soccer practices next week, I play the piano at my church and I am a teacher who will be going back to work a week from Tuesday.  There is no way I can be homebound so now I have to get set up with a wound clinic.  Not a big deal, but just another inconvenience this stupid diesease has caused in my life!  Also, my wound vac started acting up last night.  My DH and I got it to where it is working and no alarms are going off but it is much noisier than it was before which is driving me crazy.  I go to the doctor tomorrow morning and hopefully they will be able to fix this crazy noise!!! Ugh!

Aruba

tina_jason, glad you had a good weekend!!   I recall the noises getting louder if the seal was not tight enough.  The frustration of thinking it was sealed all up and then that noise drove me up the wall.  If I redid it and all was well..it was like "son...don't move one inch" .  That is strange with the homebound status..but they probably stating if you can get out of house, you can make it to wound center to cut costs of nurse visit.  I remember going all the way to downtown hospital to let the surgeon's nurse help me out when I could not get a tight seal.  Hang in there and remember this is temporary and will be in your rear view mirror (hopefully soon!!!) 

lisa2012

Yes, it is hard to know when a low will hit. I had my exchange surgery 5 days ago, all good. Now Confused and worried about finding as sports bra that opens in the front. Went 2 places and they didn't have. Am I wrecking my results?



A friend I had coffee with today said- didnt they let you choose? wouldn't they let you go bigger? All I wanted was my large B/small c size but now I feel like, did I make a mistake?



And worst if all - a dear friend who had throat cancer last year has to go back for another PET scan because of some small spots on her lung. She came by today to visit.

She told me, and then she asked about my surgery and it didn't really sink in till after she left.

She has to wait a month for another scan. Obviously stressful.



Thanks for listening. When DH comes back well go to Kohls and look for bras.. ( i can't drive yet )

bevg49

I wonder if I need one of those wound vacs... I never even heard of it and the surgeon didn't mention it. My scar opened at least a month ago, deep and gaping. He just started having me pack it but the thing is it isn't really draining anything much. The first day the gauze was yucky but now it's pretty much empty when I take it out. But still, the scar hasn't closed. I don't know what the answer is. He says it will close but I wonder if I should go to a wound clinic. I KNOW there is no way insurance would pay for anyone to come to the house. I coudn't get a nurse to show me how to do the drains after surg.... Then I had a hematoma, came back to the hospital for emergency surgery because I was bleeding to death, THEN 3 days later had another with another emergency surgery... Then when I got out of the hospital insurance was "kind" enough to give me ONE nurse visit. It's not like I didn't work all my life and pay towards my health insurance. I hate the insurance companies in this country....

Tazzy

Juneau: hope something is working for you with the SE's... just hang in there sister.. it gets better - truly it does.

Mcook: that is hilarious about the pot - omg! You never know one day you may just want to try

Jpmom: beautiful said post.

Liefie: sorry to hear about your mum.

Welcome Blondie - sorry you have to be here but it's a great place to land. Lots of support and love. There is so much to take in when you are dx'd - hang in there.

Aimz - that is some tale... good to see you laughing about it still.

Tina_jason: they just keep on putting one hurdle in front of the other eh? Guess you wont be creeping up on anyway with that noise following you  hope you get it fixed tomorrow. Because I am not housebound I have to make a trip to the health centre here to have my dressings changed, last couple of times friends/neighbours took me. Next time I will be taking the bus. DH works other side of town and I told him I will be fine and he doesn't need to take more time off.

Lisa - why would your friend make you second guess yourself about the size ? Sorry about your other friend too. Good luck with the bra shopping.

Bev: I really don't know how you guys cope with your health insurance in the States.

I had a lovely day yesterday with DH. Went shopping for a new bbq - came home had a nice lunch. Then in the evening we sat in our garden around our fire pit and had a couple of beers. I actually forgot about bc for a bit - was lovely.à

Today... I have been up and down, fed up then OK. I hate how BC has stopped me doing what I want. For once in my life an outside force is controlling my life and its hard to take. Just really pissed at it today. Thanks for listening. I'm gonna pour myself a beer and watch a movie I think.

Take care of yourselves, hope you all manage a good nights sleep.

Anonymous

A friend came to visit today and gave me this lovely poem on pink paper. For those of you who have had surgery, regardless of the kind - I hope it will touch you as much as it touched me. It is called "My Breasts are Gone":

My breasts are gone... but - I still have my mind to think, to create, to wonder.

My breasts are gone... but - I still have my eyes to see all that is around me, to read, to view the skies, to cry when I am sad.

My breasts are gone... but - I still have my nose to inhale the scent of flowers and trees, to savor a holiday meal being shared with those I love.

My breasts are gone... but - I still have my ears to hear the beautiful music of a favorite composer, to hear the laughter of my children, to hear the words of love from my husband.

My breasts are gone... but I still have my arms to hug my husband, daughter and sones, to hold a newborn baby, to embrace life in its fullest.

My breasts are gone... but - I still have my hands to write the words I feel in my heart and think in my mind, to do the crosswords which give me pleasure, to express my feelings to those I love.

My breasts are gone... but - I still have my legs to walk along the beach on a warm summer day, to get me from here to there independently.

My breats are gone... but - I still have my heart to love, to laugh, to feel.

So, you see, my breasts are gone... but I still have all of me.

Wishing you all a restful evening and sending big giant hugs!

luvmygoats

Lisa2012 - Don't know if you found your bras at Kohls. I bought front fasten sports bras at WalMart.  Fruit of the Loom. About $10 each. That was earlier in the year but I think they are standard item.  Someone on one of these boards mentioned them. Still wearing mine. I like the no bounce/support. I have a couple nicer ones for dress up/church but wear the sports ones every day. Have 5 of them!

tina_jason

Lisa- I found bras I liked at Kmart.  They are called Bestform and they are sportsbras that open in the front.  They have been a lifesaver for me and because they are cotton with no underwire I am hoping they get me through rads.  Better yet they are fairly inexpensive as far as bras go.  In fact I think I might stop and buy another one tomorrow.

Tazzy- I love your posts and how you keep up so well with everyone!  Glad to hear you're out and about and doing well after surgery.

Bev- I packed my wound for 13 days before they put the wound vac on.  I wish I would've gotten it sooner.  At the point when I had decided I was going to ask for the wound vac my surgeon suggested it before I even asked.  I have only had one dressing change since I got it but it seems to be working well as far as I can tell.  Tomorrow is my second dressing change and I'm excited to see the results.  If you have any specific questions private message me and I can give you more details.

Aruba- I called the nurse and all I had to do was change the canister.  It might have had a small crack or defect in it that was causing a leak.  After I changed the canister it sounded normal again.  Thank goodness!  My DH is a very light sleeper.

RoulaG

Ramols - thank you for that poem. It's true the breasts may be gone, but who we were and still are remain the same.

juneaubugg

D1-2 was THE WORST with SEs. 5 hours after completion I got really queesy. I ate lots before it came on and took my daily walk. set the alarm and woke up all night eating saltines and drinking piles and piles of bottle water provided by my DH (dear husband).



D3: made it out for a few hours with my DH this afternoon to see fiends. Constipation coming. Took one Ducolex and wait. I have Crohns Disease so i then ate all wrong, but no help yet. :-(. Headache. TE hurts, cath port insertion really hurts still ( got it morning on day one) head feels foggy, dizzy, not sure I'd feel safe driving right now. Equilibeium is certainly off. Now waiting for the hair loss.



Brushing teeth after every still good tasting snack and rinsing with that Biot.. Stuff. Exceedrin, ginger capsules help nausea with SEs too. I have a Zofran left I didn't need today. Taking them every 7.5 hours not 8. Then as one ends: the next kicks in.



Tonight was all about sleep. Alarms went off, I took pills, went back to sleep.... Good night Ladies.



Hope you all had a nice weekend and feel better.

websister

Hi everyone

Blondie - welcome, diagnosis can definitely change after surgical pathology comes back. I hope you find the support you need here, it's a great group



Juneaubug - glad to hear things are getting better. My port was inserted with local anesthetic a week ago Thursday but I knew that it wouldn't be a general anaesthetic, it would be very different to have gone in expecting the general. Mine is also quite tender still and is on my operative side. I am noticing signs of cording so I will be contacting a physiotherapist this week but first must get through my first chemo tomorrow. As ready as I can be for it.



jpmomof3 - it will be sad to have your mom leave, sounds like she has been an integral part of your breast cancer journey so far, I'm so glad she was able to help you. My mom is still in the hospital, I won't be able to visit her after tomorrow due to chemo and her C. Diff. My sons and some other friends have stepped up and are helping out with her.



Tinajason - sorry to hear about the hassles with the wound vac and home care vs wound clinic



Ramols - thanks for the poem



Mccook - glad you have a surgery date



Goodnight, hoping I can sleep, sounds like the dexamethasone and side effects might make that difficult for the next few nights.



Take care

Anonymous

websister - thinking of you as you embark on the next leg of this journey today. Hoping for minimal SEs.

Those of you discussing bras post-exchange surgery... I have a long way to go for this, but what do I need to know? Right now with my TEs my PS has encouraged me to not wear a bra and I am very happily complying!

juneaubugg

Ramols: if I'd had both done I wouldn't be bothering. My other side is padded.

juneaubugg

Author Unknown: 1986



The road to success.



The road to success is not straight.



There is a curve called FAILURE,

A loop called CONFUSION,

Speed bumps called FRIENDS,

Red lights called ENEMIES,

Caution lights called FAMILY,

You will have flats called JOBS.

BUT

You do have a spare called DETERMINATION,

An engine called PERSEVERANCE,

Your insurance is called FAITH,

Your driver is GOD!

You will make it to the called SUCCESS, but

There will be one more trip to make.

And when that one is done,

Guess who will be there to welcome you?

And state to you' JOB WELL DONE'

May GRACE be with you and PEACE be upon you.

jpmomof3

Juneau and Ramols, those words of wisdom and beautifully said and should give us perspective on dealing with our situations.



Liefie, so sorry to hear about your mom, I think you may have mentioned her situation before and I can't remember if I responded then, but best wishes to her and your family in dealing with all this. I am very fortunate that my mother could help us so much during this time. It definitely made a difficult situation a lot less difficult. Just having someone there to listen to my rants was a big help. It's hard to talk about most of the emotional aspects of this stuff to my DH. Guys just don't want to hear about that kind of thing because they cant really do anything about it. But just listening helps. I hate that I had to enlist her help though. Daughters shouldnt have to depend on their mothers at my age.



Tazzy, I am PO 'd today too. Maybe my ovaries are starting to work again. Hope not. My DH told me I should be happy the last path report was clear during one of my outbursts last week. Happy? No not happy. Relieved maybe. Relieved that I don't have to get more body parts chopped off for now. But not happy. I still have to do more horrible things to myself. Now on to the next phase of torture with radiation. I am angry that I am in this situation at all. I hate that my body let this happen to me. I can't do things I should be doing at my age because of all this. How far I have fallen in a year. Fuck cancer. Fuck you for existing.



Ok sorry for venting yet again. I have to get over this dark stuff. We are in this situation, no way around it. But we are doing everything we can to get out of it, no choice, we all have to be heroes. We are all fighting the fight of our lives and hopefully passing all these tests that are way more important than any other tests we have taken. Ramols and Juneau we need to surround ourselves with those words of wisdom to help bring us out of the dark places,



Blondie, welcome. Confusion is normal especially at the phase you are in. It does get better though. You are processing a huge amount of information and it will sink in. Ask lots of questions, use lots of sources. I can't say it ever makes sense but it will become less confusing and the information pours in and the plans are made. Use us to help too!



Aimz, ant that the truth, all modesty is gone now... Good luck on rads. I will be there with you in a month or so. Let us know how it goes.



Tina, glad you had a good weekend. Good for you for doing what you want and not letting that vac slow you down.



Juneau, glad you are feeling better. At lest you know what to expect and can plan for it next round. Once those symtoms pass for that round I found that they didn't come back until the next round.



Websister I hope your mom is improving. Hope that cording doesnt worsen for you. A lot of us here seem to be having trouble with that.



Ladies I am going to take my mom out for a nice lunch and drive some more fast cars. Heal fast for those post surgery. Less pain. Fewer side effects. Good luck to those starting radiation and doing the next round of chemo. Get one more step behind you and see the light at the end of the tunnel get closer. We will win. Cancer fuck off.

Tazzy

Ramols - thanks for the reminder that we are still the same people we were before this crap, just a little less of us.   I am going to a workshop in September for women who have had mx's... I will take this with me. 

jpmom... I think its wonderful that you had such quality time with your Mum.  No one knows us like they do.   DH's dont understand our emotions really, if they cant fix it they dont understand it.   I want to get out of this slump I seem to be getting in and I know it aint my overies  It really is so unlike me.   My DH has always said that my signature tune would be "Always Look on the Bright Side of Life" but not so much lately.  Like you I am so angry.    Have fun test driving fast cars... let us know how it went.

Websister... good  luck with the next tx. 

Wishing you all minimal SE days, quick healing for those that need it.  Happiness, smiles and love to you all xxxx

websister

Juneaubug - thank you for the poem, inspiring

In the chair now, excellent nurse. Epirubicin is in and 5 FU infusing now (love the name)

Cyclophosphamide next.

Visualizing FU to the cancer cells

Thanks for the good wishes, drinking lots and have a wonderful 'cell mate'



Have a good day everyone

Blondie51

Thanks so much jpmomof3 !! Its been an emotional day today, but it will get better. Heading to see the PS today and the MO on Thursday.

ohsoconfused

Hello, ladies.  Hope everyone had a good weekend.  I am glad mine is over.  I hate Taxol!  I am so glad I won't be getting it again.  It literally puts me in bed for 4-5 days because I hurt soooo bad from the hips down!  Even my toenails hurt!  Does anyone else get extreme neuropathy from Taxol?  I feel like I'm on that medication roller coaster - -- hmmm..  BC so have to give you poison.  Oh... body reacting to poison?  Here, take Neurontin to help get rid of the tingles - oh... Neurontin making you gain weight?  Sorry.  Can't do anything until you are done"! 

Will the numb/pain/tingle/knives/frostbite/bad burn feeling ever go away in my toes and fingers? 

I didn't have near the trouble with AC... Think the orange juice helped me through the nausea.  As far as sleep?  My Onc nurse warned that I would be exhausted but would not sleep because of steroids for the first night anyway.  Port is still a pain.  Mine looks like it is trying to break through my skin.  Surgeon said not to worry.  She actually sewed mine down.  Gee, thanks!  LOL.  She also said it is not a good idea to have it removed until a year after treatment stops.  That means I have to keep this thing in for another two years?

Supposed to see the radiation doctor this week.  Still nervous about that.  It's a 30 mile drive one way for treatments.  Not sure I can handle 6-1/2 weeks. Do they actually talk to you first? Is there any test they should do before they start radiation? What is it like? I am told that I will do okay at first, but after a while it will wear me out and all I will be able to do is sleep. Is this true?

liefie

Websister, you just cracked me up with the FU to the cancer cells - way to go!

Juneaabugg and Ramols, thanks for the beautiful, inspiring poems. We need inspiration like that to keep us going. Juneaubugg, you sound so much better. The worst of this round is probably behind you, like jpmom said. Next time you'll be better prepared to face the beast.

jpmomof3, enjoy your outing with your mother. She sounds like a real blessing. 

Tazzy, a lovely Monday to you. You are a shining light on this forum - always so positive with an excellent sense of humour.

Blondie, so sorry you have to join us. None of us asked to belong to this club, but now that we are here, we help each other so much by listening, encouraging each other and giving sympathy and advice where we can. Nobody understands like the women on these forums. I cannot imagine what women with bc did in the days before Internet, and where they turned for solace. We are privileged.

liefie

Ohsoconfused, the radiation is not that bad at all. I am sure you will be able to do it; most women handle it okay. I finished rads a month ago. Towards the end I had some redness and itching which hydrocortizone cream took care of. I was a little more tired than usual, yes, but did not even take naps during the day, just slept a little longer at night. Please don't believe all the horror stories you read or hear. Remember, people post their worst experiences here. It does not mean that it will happen to you too. Chances are it will not. Best wishes to you

ohsoconfused

Sorry about my previous post.  Just been a horrible 5 days.  However... I am up and out of bed today.  DH left me a kitchen full of dirty dishes (he has taken care of me ..i.e. cooked while I was in bed).  Bed is stripped and laundry is washed.  I watered both gardens and planted more beans (may be late in the season, but this is a really strange year)

Chickens are fed and happy.  Dogs are fed.. Had to take a break because all of the pain is not gone, but... now.  On to tackle my kitchen. It's a relatively cool day so may even get enough energy together to make some bread and get those nectarines canned. 

Wish me luck everyone!  BC sucks, but it blends into the background a little bit better if we can retain some level of normalcy.  Love to all!