January 2014 Surgery Sisters
Comments
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summer,
My heart is with you. Wow! you have such a great attitude. you go girl. kick BC's ass.
laurie, how is your daughter doing.? I am glad you have a new conviction....My DH and I have some pretty crappy moments...but like you and your BF we'll make it and laugh at the stupid small stuff.
I hope I don't offend anyone with my wicked tiara posts....just trying to be strong with the rest of you.
We are having steak on the grill....my fav. especially since it means I don't have to cook. Yay.
good weekend to you all,
love
Eve
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Eve....my daughter is still suffering from steady headaches. Hard to keep her doing nothing though. But it's 9pm here and she's in bed with lights out. Hope her headache is gone tomorrow.
Laurie
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Haha....have any of you got a chill and then realized you don't have the hard nipples? VERY weird sensation....just say'n. 😊. That's all.
Nighty night.
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Levassell,
Omg that's so funny!! I said to someone the other day, " wow it's pretty nipply out here and then I was like hmm I don't have nipples. It is a weird feeling. Is that the phantom stuff people talk about? It's like some spots are completely numb but then you can feel weird sensations...
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Hi surgery sisters! I know I've been scarce lately. I somehow ended up in charge of making the schedule for my daughter's softball league - something I've never done. We have over 40 teams and also have to coordinate games with the other two leagues in town because for some age groups we don't have enough teams to just keep it "in house". It has been a NIGHTMARE!!! I have literally spent 10-15 hours A DAY working on this, between computer work, phone calls, texts with the other two schedulers at the other leagues, etc. Crazy. I finally wrapped it up last night and sent it to the coaches this morning. I'm exhausted, my husband thinks he doesn't have a wife anymore and I have no energy for my kids. I've had dishes in my sink for days, laundry in the dryer from Monday.... I've been the wicked witch of the west with the people in my house and I hate it, but what can you do? Hopefully a few days of slowing down will let me rest up and get back to normal.
We had a bit of a scare last week. Hubby has had a bump on his tongue for months, and his dentist sent him to an oral surgeon last week to have it biopsied. Well, the oral surgeon took the whole thing, not just a piece for biopsy. So now Hubby has 24 stitches in his tongue. Can you imagine???? Poor guy - he has eaten nothing but pudding, yogurt, ice cream and bananas for days. It is still so swollen and sore. I feel bad because after all I've been though, I know he needs some TLC and I just have been too busy to do it. Thankfully the biopsy came back ok.... NOT cancer. Best news all week!
My appointment with the RO was a non-appointment. Ugh. I was supposed to do my mapping, CT scan/simulation. None of that happened. The RO examined me and said my skin & muscles are still too tight (he told me I need to do my exercises.... I do them EVERY DAY!). Apparently the physicist is going to be out for a week, so RO didn't want to map my plan and then have me have to wait a week or two to start and then my anatomy might change if things loosen up. So now I go back on Tuesday. <sigh>
Eve - You totally ROCKED that post. I loved it. I am going to show it to my husband, but not today because he's mad at me already. LOL In fact, would you mind if I posted it on my blog? I won't use your name or anything.
Thinking of all of you!
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Hi everyone,
I had BMX on Jan 28th after 4 rounds of chemo. My BS won't even discuss recon until I finish RADS. I am leaning towards no recon at this point - don't want more surgeries. I thought the chemo was awful and am amazed at those who can work while going thru it. I totally lost my appetite, and everything tastd awful, even water. I survived on protein drinks from SAMs for breakfast and Ensure for dinner. I would manage to get some solid food down but not much. Of all things, I found Pediasure mixed with cranberry juice tasted good. I had 3 drains after surgery and they came out one week at a time. I have 5 children and 6grandchildrenI am living with my oldest daughter, and both my sons were at the hospital for the surgery. The first time the nurse came in to empty the drains, my youngest son (and the baby of the crew) asked the nurse to show him how to do it. He did it each time until he had to go home 5 days later. ( I came home two days after surgery.) Luckily, my middle daughter arrived the day Tim left, and she took over the drains for he week she was here. When she left, I did them myself because the daughter I am living with gagged at the thought of them. My SIL was willing, but I felt better doing it myself. I am very blessed with my children. The 3 that were there for the surgery actually fought over who was going to spend the night at the hospital with me - not who HAD to, but who would get to. Again, for the first time ever, the youngest overrode the older two and stated that he was staying, the others could do whatever, but he was staying. The funniest part of all is that my surgery was the day of the Atlanta 2inch blizzard, where people were stranded on roadways for hours, so everyone stayed with me that night- they had no choice. Tim won and stayed the second night. I am doing Kay with recovery, but feel like I am wearing a bra several sizes too small. Both arms are stil sore to move- I probably did too much too soon - driving and grocery shopping, etc and have lymphodema in my right arm and hand. I stopped wearing the compression sleeve and gauntlet Fri because they seem to make the hand worse. I will be calling the therapist tomorrow for an appt. thanks for listening.
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Well, hello Michelle,
Was getting worried about you. Glad to know you are ok. What a task, to do the schedule. I hope everyone appreciates the time you spent on it. You are such a good mom! Man o man, I feel so sorry for your hubby...that just sounds miserable. Sucks about not getting to get further with the rads, but I guess they want to do things properly, you don't need any more set backs.
I always loved the wicked witch of the west...was it Margaret Hamilton? Do you know she died from the green make up they used...it had uranium in it.
eeeeeeek yes you can use my not so nice post...lol...and my name too.....I said what I meant and meant what I said. Your hubby will hate me though if you show it to him....my DH has been really pretty awesome....he knows who holds the key to the gates of his heaven if you know what I mean. It is a real motivation for him to be kind...lolLaurie...your poor kid, wow she must have took a really big hit. Hope things are much better today. So you are numb everywhere, in the boob/foob area? no feeling at all when you touch them? I have feeling and the nips kinda work but not like they used too. I still have pain and flinch every time my DH comes close or even with the water hitting them in the shower. I am now wondering if that pain will ever go away. It is all so weird.
Diane ...hope your pain has lessened and you are able to move around a bit more freely.
WELCOME Anne,
You have had a time of it. Your family sounds positively fabulous. I envy you having your kids so close. And fighting over mom....cool. I love my boys too. So good when they call just to say hi.
So your siggy says mets...in the nodes? or else where.. oh I so hope not. Keep in touch, I think we are the best group of ladies here on the forum.
Mary, are you still melting? Hopefully you can get outside and breathe in some lovely spring air.
We went to the dog park today, pup decided she was hot and wallowed in the muddy, very stinky water by the drinking fountain. YUKKY stinky, white, muddy dog. lol she loved it. We then took my hanheld GPS and went geocaching...We found one cache. Walked a long way, passed by a house that had a goat, chickens, roosters and turkeys in their back yard. I am so jealous, I want that! Pup couldn't quite figure out what she was seeing. So funny.
K I am done...off for a shower and a game on the computer...
love to all
Eve
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I just happened upon this post today....
made me cry.... this is from a husband of one of our sisters.
if you are so inclined look up his other posts.
great guy..... our other half's can maybe learn something from him.
my dh is pretty awesome. but not as verbal as this man.
Colt45 wrote:
I am a husband/ caregiver...
I didn't know where this should be posted---and since my wife is going through treatment now, I just picked here.
I have lurked since my wife's diagnosis and have been posting only for a few days. I can recognize a sisterhood when I see one. An army of kind souls.
I am humbled by your humanity. Your grace. Your power.
My wife says she's just doing what she has to when I tell her I'm proud of her. But she's doing more than enduring treatment for self serving means. She's doing it with a grace that doesn't frighten our 2 small, sensitive girls. THAT is strength. I see my wife comforting our 4 year old over something trivial (the kind of thing only 4 year olds think is apocalyptic) and I see a women of strength and beauty the likes of which I cannot imagine life without.
I read your posts and I see my wife or sister or mom. I see a beautiful woman who is power and grace and humanity.
I read accounts of people letting you down or failing to support you.
It breaks my heart to think that you aren't being held or hugged or listened to to the degree that you deserve or more importantly NEED.
You are beautiful. Worthy of love and support and someone is missing out on YOU. It's not your fault. People with a heart and a soul and a brain are inspired by you. Touched by you... whether you think you deserve it or not.
People in pain don't reach out like you do to comfort others. You ask very little. You deliver day after day for others. And you think you aren't worthy of praise or wonderment or fanfare. You are wrong.
You are to be cherished and held and loved. And even on days when someone in your physical environment doesn't seem to be doing quite enough of this, you are being cherished and held and loved from afar by someone you have touched----even if quite by accident.
Know this to be true.0 -
Tiara sisters!
Eve, your last post from colt45 made me cry, too. I am not sure why but this has been an emotional weekend for me and made his post all the poignant.
Michelle, you have been busy! Hug to your husband for quick healing!
Laurie, sorry to hear your daughter is still feeling not so hot. I have the same phantom sensations frequently. I find myself rubbing my former nipple area when the sensation happens only to realize nothing is there! Makes me feel sorta normal so I don't mind at all. I am finding hugs a bit awkward because I can feel how hard I am with the TEs and I don't want others to feel the same.
Wishing all of you a great week ahead.
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Hi momaton
I am happy to say that I made an error when filling out the Dx section. There were several lymph nodes (3) involved but no other mets,Thank God. Both the PET scan and and surgical pathology show me cancer free at this time.
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Hi Anne - welcome! Sounds like you will do fine at home during your recovery with all the help. Nice!
And welcome back, Michelle! Wow. Sounds like you need a vacation...take a trip and get away from it all? Or, just go to your happy place and lock the door
Thanks, Eve, for the post by Colt45 - it made me cry, too. I think I will have to print out his message and tape it to the frig. I've been very emotional this weekend, too, and he touched on some very valid points. I think I'm getting cabin fever and just sick and tired of being cooped up and feeling very isolated and alone. The weather is still very cold here, so I'm going STIR CRAZY!!!
I don't have any phantom pains. My breasts are numb and I have no nips - the left one had to go, so decided to take the right one, too. I can get stuck with the needle during fills and don't even feel it at all.
This will be a busy week for me. On Tues. we'll be leaving for another long distance trip to the clinic. I've got a blood test and visit with my MO before getting Zometa. Then meeting with a RN that specializes in counseling breast cancer patients, followed by fills and meeting with my PS. Then we're driving to my mom's which is only an hour from the clinic. It's been crazy-town there. My mom has Alzheimer's and last week she fell and broke a rib. She's really going downhill fast with her memory and getting more confused and agitated. My brother who's been her full time caregiver at home wants us to get serious about finding long term care housing asap. It's been hard to think about all that since my diagnosis, but I know I gotta saddle up.
So...on Thurs. we drive back to the clinic for appts. at the Survivorship Clinic and PT, then 3 hour drive back home. I feel sorry for my hubby who has to get up at 4:30am everyday for a 2 hour commute to work - each way. This is really been hard on him, too, but what can ya do but keep going....
(((hugs to all!)))
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Hi all. Having a harder time than i thought it would be with this one step reconstruction. I finished rads on Dec 30th so the left side has lots of scar tissue I guess. The right side barely bothers me. The drains are out but still swelling on left side and so tight i cant take a deep breath.
Finally got the path report back, 1 of 4 nodes had residual cancer left after chemo and the 6.5 cm tumor in breast was 1.5. I had a rare IDC cancer called cribriform. The good news is the outcome is very positive and this type tends not to recur in other places.
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Alexandra- I'm so glad you are doing well so far, and that you have the support of you husband. I may be in San Jose next weekend with some fellow students at a Taekwondo tournament...obviosly just watching and cheering for another student, but I will be thinking of you, and sending hugs in closer proximity.
We are all fighting this thing...hoping to make sense of it and looking for a path forward that will help us regain some semblance of normal life. I keep telling my son that we have no control over what happens in our lives...only how we choose to deal with it, and i really believe it. Good for you that you don't care what people think. This is your fight and you decide what works for you.
Ladies - Thank you all for your words of encouragement. Eve, I loved your post and all the reactions to it.
Laurie - I'm relieved to hear that you and your boyfriend are going to get through this together.
While I often wish I had someone in my life so I wouldn't be so alone with all of this, but I also recognize that in many ways it is easier for me. I have been there before, having had major surgery when I was married. You find out who you are with in times of struggle. Your men should support you, and apologize when they freak out and take it out on you. My ex husband just wasn't up to it, but it sounds like all of you have some wonderful men who, although they occasionally fall down, are there for you. I say take out that black tiara when it's necessary, but remember to acknowledge their loss and forgive them when they are butt heads, because something terrible happened to the women they love, that has changed her life forever while they just have to stand by and watch, unable to fix it. This has to be very frustrating for them too.
Some day, I will get back out there and will try to find someone who will love me...foobs and all. It truly scares me. Maybe that is why it is easier to focus on my training.
Sorry for going on and on.
Strength, hope and love to all of you!
Diane
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Ok Diane...not that made me cry. Yes you are right...they do need forgiveness when they are butt heads....but he really has been there when I've needed him the most. Thank you for reminding me.
Laurie
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Lindacam...sounds like you have the same recon I did. No TE no replacement surgery? One shot deal....plus some fills?
Laurie
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Yes I shot deal, but 550 at once
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Diane and Eve, thanks for the thoughts: I think I overdid it yesterday, so I fell asleep on my bed right after dinner on top of the unfolded laundry of the weekend ... oh well, something's gotta go. Today is soso, just trying to wrap my head around some work stuff right now and supervising some tree guys trimming our palm trees. I am grateful that I can work from home today. I don't think I could drive.
Diane, that made me cry as well, I think I am lucky to have a good DH in this situation who does not bug me too much and ask too many questions (everyone is different, and I am the kind of person who talks when I want to, not when people nag me), but who is with me in his thoughts. Also, friends have been invaluable the last few months, just amazing. I hope I will be such a good friend when any of my friends needs it. My family is far away in Europe and in Minnesota, so friends is all we have here.Michelle, glad you are okay, that scheduling thing does not sound like fun. I am not looking forward to the time when my kids will do organized sports ... right now I am just trying to be on the case of my 8 year old and his very relaxed attitude to everything related to school.
I hope everyone is having a good day, as good as possible. I feel grateful for so many things, no matter how crappy I might feel today, trying to keep a positive attitude.
Cheers,
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hi all,
Alexandra, Grateful is my go to word ...I have a pendant in the shape of a key with wings, heart and an amethyst setting.... On the back it is engraved with "gratitude". I rarely take it off and hold it when I need to remember to go through my list for what I am grateful for.
My 11 yo step son also has that lazy attitude about school. His grades are ok but not up to what we know he can do. It is difficult for us because we don't have him with us. I am praying that when he turns 13 he will want to come live with us. Spring break starts this week...I get to spend a couple of days with him while dad is at work...can't wait. We are going to make ice cream and home made pasta... yumm
thanks for reminding me. You also Diane. Of course I realize everything you said. I was just trying to illustrate how silly we can be... an argument over,real plates vs paper...funny stuff....and now we have a new joke between us. Just for the record, I absolutely adore my husband. He takes out my tiara and polishes it and insists I wear it...good guy!
You are so beautiful, if and when you decide you want someone in your life...watch out....I am certain there already is a multitude of eligible bachelors just waiting for the ok.
Oh Mary, so sorry you are going stir crazy. Hope your trip can include some fun. The responsibility of caring for a parent must be overwhelming. My parents died when I was in my early 20's. My heart goes out to you. I have my in-laws but they are still pretty independent. I cringe at the thought of Dad driving....One Sunday on the way to their church...they were running late, my MIL was urging my FIL to go faster...he hit 80 mph..OMG....a cop pulled up next to them and gave the hand motion to slow down. lol nascar driver in training.
ttyl,
thanks for all the support and lovely posts you all are the best
love and hugs,
Eve
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Linda - your pathology report sounds like really good news. In your signature it says your tumor was 3 cm. Was it found out later to be larger than they originally thought? I had a large tumor, too - somewhere between 5-6 cm. Like you, I had preoperative treatment to shrink it down, but I was on hormonal therapy instead of chemo. First Arimidex, then Aromasin. It shrunk, but not enough to remove it with a lumpectomy or re-excision, so went for the full meal deal and ended up with nice wide margins and no more nodes besides the one found during lumpectomy.
Wow, you've really had a long haul. That's interesting that you had chemo, radiation AND hormonal therapy before surgery.
Scary stuff, isn't it? You must be so relieved to know that you stand little chance of having a recurrence. That's awesome!! Congratulations!
Eve - your necklace sounds like a great reminder to be grateful. I need to remember that, too. Grateful to still be relatively young with hopefully many years ahead of me. The challenge will be to use that time wisely and not waste it feeling sorry for myself, which I've been doing a lot of lately.
Be well!
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bc101. I had 2 tumors, 3.0 and 3.5. The chemo and rads made one disappear and the other smaller. Yes a long haul. Very weird not to have nipples I must say.
Now that all treatment but Tamoxifen is done and recovering from surgery I know have to figure out who the new me is. I have scars, residual side effects and memories of the battle for the last year.
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Linda,
That is it in a nutshell. Who am I now?
I am not afraid.
I don't think about cancer.
I don't feel like a survivor....maybe that comes a year or so down the road.
I am not depressed.
My BS says I dodged a catastrophe.....ok.
I feel numb about the whole thing, as if , IF I didn't have the scars and weird looking boobs/foobs this all never happened.
What I do feel is fatigue, all out fatigue. I sleep all night, don't get up until 9:30 am most days and then I am on the couch until 2pm. When I start feeling up to doing something. Very sooooo not like me.
My skin is all screwed up, dry as all get out and blotchy red...I am getting worried as this is looking like the lupus my dad had. My muscles ache and my bones hurt? wth
sigh....one more thing.
I want to feel good...you know? I want to get on with it.
I walk or am on my stair stepper, while using my little hand held weights.
I just can't get to having energy and zest for living and moving...
sorry to be a downer...
trying to figure things out.
seeing BS on Thursday so maybe she will have some answers.
thanks for listening,
Eve
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lol
just read my post, hmmmm, maybe a little depression in there. Oh for heavens sake...I need to get to the doc and figure out wth is going on. I just don't want to spend anymore money on BC stuff.
Kick my butt ladies...a good pep talk would be welcome...
love and hugs
Eve
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Eve,
I was having a pity party for one this morning. I was crying outloud and saying cancer has taken more from me than my breast. It has taken my confidence, my security about my health, my ability to return to work (at least for now), it has made me withdraw from my family at times because i dont want them to see me cry and be weak and upset, it has made me feel isolated at times- because who can truly understand what im going through and how it is making me feel. My family has been great- but their attitude is u should be lucky u dont need chemo and u didnt die from the cancer! I get that, i really do!!! But i am going through so much right now both physically and emotionally that i dont feel i have someone good to talk to. By good, i mean someone who is supportive, positive, will listen and not be little what im going through. I dont have anyone that fits that bill. Like i said, i have a lot of support. People have brought meals 4-5 times a week since january, my family helps w my 4 kids etc etc etc. i am blessed. If asked right now, what do u need? I need a friend. One that will listen, be positive and try to understand how i feel about all this! And at the end of our talk, hug me.
I've waited 10 years for the teaching position that I was finally hired for this past August. Then just 4 months later I'm told I have cancer and need to leave work for surgery. It's just not fair!!!!! Of course I'm new so I have no benefits. I had 6 days of sick leave left when I went on leave. I've been out of work since jan 29. My contract only gives 45 days beyond those 6 sick days. During those 45 days I have to pay my sub so I haven't been getting paid. I'm struggling financially and feel the pressure to return. I don't feel ready. I'm going twice a week to physical therapy, once a week for fills etc. I haven't driven yet since surgery, I don't sleep well.... I meet w my supwrintendent tomorrow to see what options I have if I am unable to come back before the 45 days are up ( April 21). I was told by my principal that she can't guarantee she can give me coverage so I can leave on Tuesday's for my fills and if the day after the fill if I'm too sore she can't guarantee I'll be able to take the day off... After all, I'm out of sick days.
This whole thing sucks!!!! Cancer has not just taken my breast, it has taken part of me!!!! Now I am left to figure out who the new me is and how I can build myself up again to be strong and confident to do the everyday things I used to!
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You dont sound depressed just a little lost like me.
I have cording now on the cancer side and possible cellulitis.
My husband says cant wait to have my girl back. He does not understand i will never be that girl again.
I am stronger but more vulnerable.
I have battle scars but no one can guarantee the enemy wont come back.
Yes i used to be the energizer bunny but not so much now.
People tell me how brave I am but this is a battle so not brave just trying to get through each day with my dignity intact.
Glad to be alive but have short hair, foobs, no nipples, so kinda dont look like me
Linda
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hi everyone, I just read some of your posts and can completely understand what your going through; I'm going through or have gone through each one if those emotions. My self confidence has taken a nose dive, I don't look like myself, I get anxious when I think too much about my situation etc. I feel that I have gotten through treatment thus far, but I know that my journey is not over. I Was just telling my husband that 'cancer" will be with me forever. It has changed me . Not that I will always have cancer, but after what I (we) have been through, it truly is a life altering experience. Now I'm trying to move beyond the shock, the fear, and the sadness...slowly I am integrating back into my life. I have returned to work after 6 weeks off post surgery, I've managed to take my son to his swim lesson, and I even went to a family outing last weekend. Many people font know about my diagnosis, sometimes it makes things easier and sometimes harder. I wish we were all together, I would give each one of you a hug and tell you that it will be alright and they your not alone. Thinking of you all..:)
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Girlstrong, yes a gentle hug all around. Only when you go through this do you really GET it.
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Oh my gosh you ladies...
I love you so much!
so willing to share and be vunerable to let me know I am not alone.
It is difficult is it not? to just be with other people... very hard to all happy and light and fluffy I try but I really don't care any more about stupid shit.
I just want to get up in the morning and feel good...that's all I JUST WANT TO FEEL GOOD!
ahhhhhhhh!
rant again....
eve
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Eve....Yes just to feel energy and no pain.
People ask how you are but they want you to say hood so I do. I feel pretty violated with everything that has happened but they feel all treatment is over so I must be all better right? NOT!
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Oh so yes Linda...
I get that all the time..."you are ok now right"
ummm NO and NO dumb a$$
Arrrrgh.
the thing is I am trying with everything I have to be ok. to feel normal, to simply feel good...It is just not happening. I don't get it.
I WILL get there, just a lot harder than I thought...
night my friends, ttyl
Eve
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Hi Ladies - I've been limping along without a computer, reading your posts on my phone. The computer guy spent an hour cleaning all the crap that downloaded out of nowhere and cleared my son's computer and only charged me $45!! His mother had BC about 10 years ago (she is 70 now) and is doing fine. Everyone we know has someone in their lives that has been where we are now. Amazing.
Today I spoke on the phone with a contracting consultant that I've known for about 10 years. He is one of 3 business contacts that I told about my diagnosis before I had my BMX. He asked if I felt as good as I sounded. I told him that I was doing pretty well, with mostly just some discomfort rather than pain, waiting for my next surgery, and trying to focus on how lucky I was. He said, and I love this..."Well, it's okay to focus on how lucky you are, but it's also okay to have those moments when you just say 'wow, this is a really crappy' and not feel positive". Of course I said I definitely have those moments, and he said it just wouldn't be normal if I didn't. So there are a few non-idiots out there that get it.
Eve and all of us - we get to be sad, get pissed, and miss our boobs. No one but my BS and PS has seen my foobs and I now have 20 lbs that came out of nowhere to loose because I was comforting myself with food. I am feeling stronger and realize that to everyone else, I look normal, but I don't feel remotely sexy, which I guess is good, since I couldn't do much about it if I did, LOL.
I feel very lucky to have found you all. Having a safe place to share unfiltered feelings has made all the difference. I'm going to try to upload my picture from the Oscar Gala (cropped because I was with my son's Kindergarten teacher, who has become a good friend).
Love and hugs to you all! May we all wake up feeling better in the morning!
Diane
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