2012 sisters

mcook301

Mrscich - regarding fills it is pretty easy! Maybe a little poking small pain but other wise nothing. Make sure to watch if your bra thing fits snug you might have to get a little larger one after fill. I got 50cc each time now at 450 cc each as I am a small c before surgery.

MrsCich

My initial fill in the OR was 400cc (My husband thought it was 500cc but was misinformed). I'm supposed to go up to 800 cc because I don't want a huge change from what I was pre surgery, 36DD.

mcook301

Ha! My doc asked if I wanted go to a small D but I am petite w a small frame so I am pretty sure that would look funny on me! So sick of these rocks on my chest!



Bf and I got frisky last night but all I could worry about was the fboob and how hard they felt. It made my mind wonder too much as much as I tried to stay focused on ...well you know. On well practice make perfect so will have to keep trying because dam it if I am going to let this take that away too!

MrsCich

Mcook, Can you lay flat on your back? Side? It definitely takes creativity to get frisky these days. I too refuse to let BC take this too.

NYCchutzpah

BC sure is strange. I feel ok and look fine but got no stamina. DH has suggested at my next Dr's appointment to ask about the fatigue . Guess he still isn't accustomed to my new normal. Feeling like a panini today, worse than a sandwich. 92 yr old MIL is driving me crazy so is DD (who moved back to help out)  Looks like I have to get out my baseball bat and beat them over the heads. It is stage IV and there ain't no stage V! They have to stop expecting me to do all that I usually do. Now is the time for me to get my life in order and decide what kind of life I am going to live from now on.

Just needed to vent

Charlotte

liefie

Marian, Sorry I only saw this now. I took a fat chance and typed in on Google 'My wife and the battle we did not want to fight', and the topic came right up. Curlylocks' post is the one you want to read. Good luck!

Juneau, here's one for you: Faith is to put your foot on the first step although you cannot see the staircase. Will be thinking of you tomorrow for round 3. Time is going by, and this will pass. Kill the cancer, chemo, kill!!!!

Cottontail, how's the rash today?

Awww, Charlotte, vent away. We are here to listen!

Websister, the green, yellow and red analogy seems like a very good idea to express how you feel. Hope your coffee date was very enjoyable!

Mcook, maybe call the dr. It sucks, but better safe than sorry.

Jen25

Thanks Ann,

  I'll look at the surgery forum. It's easy to get lost when one is so new to this. Thanks Jen25 

mcook301

Charolotte- I just read your post and you deserve every right to say who you want there or not! It is hard to have people not get offended but sometimes we need to just tell them what we want or need. hope you get some help with fatigue! I keep typing a sentence to respond to your comment about stage IV and I want to say the right thing to you. My thought is fuck stage IV- and fight and don't ever think you can't beat this dam thing!

Scorchy

Aruba, Scottiee, Ann, Allur, Junig, and Cindyl (looks like a breast cancer lawyer's firm).

Ladies, THANK YOU!  I don't know why yesterday was such a downer (rain and gray skies, I guess).  I honestly have to say that was the first really, really depressing day and you helped me out of it.  I suppose I'm just in a weird kind of limbo and will be satisfied once I can make final choices with regard to oncology and surgery.  I'm thinking too much now.  I need some action.

I'm back!  And I'm stronger for your support.  ((((((((Warm hugs to all!))))))))

Scorch

Scottiee1

Scorchy.....don't ever apologize here as to how you feel, good or bad....that's what we are here for. You are in limbo right now and you are right .....once you have decided

on your treatment plan, you will become quite focused and you will forge ahead with it.



Please vent here all you want....hell I do it and get a lot of good advice from these wonderful, intelligent gals.

Junif

Hey Scorchy--embrace your name and play "Scorched Earth" with anyone that gets in your way!!!  Glad everyone could help--we all have those horrible days...just another BC gift!

jpmomof3

Hi wonderful ladies. Despite my silence the last couple of days I have been reading. I am so far behind I can't begin to address everyone... You guys are the best though. The rants the positive words bring it on.



Welcome jen25, sorry you are in this situation, stick with this group and you will find a ton of support and people in your situation that really understand.



I don't think there is ever too much information. Sometimes it need perspective though. There is so much out there that it is easy to get overwhelmed and confused too. So it is always good to discuss the information we find on the Internet and elsewhere with someone with experience because sometimes it can be misleading. I am a physician and therefore a terrible patient. Doctors also tend to act goofy around other doctors too and do things they wouldn't normally do and there fore cause problems. I am guilty of getting information confused sometimes and getting paranoid. There is a phenomenon that happens frequently in medical school where the students come down with the symptoms of the illness they are studying.



I myself just had about five days of unbelievable stress because is was sure I was getting lymhedema... And I might be but I freaked out. It turns out that the swelling in my arm may have been inflammation from having my arm worked on by a therapist to break up the cords from my rather severe case of axillary web syndrome. The next few days my forearm had pitting edema (swelling that leaves a dent behind when you push on it). Which is a sign of lymphedema. I was in a panic and checking my arm constantly and measuring over and over again, I didn't sleep well for days. I can't tell you how much I would hate to have lymhedema. It is in curable (though in most cases manageable). It decreases function etc. horrible. I would rather lose my hair and breast 20 tmes over. But thank goodness the swelling went down and hasn't come back despite me stressing my arm out and testing it as much as possible by running and lifting weights and carrying my three year old etc. it hasn't come back!



I am still at high risk because of the radiation and the AND and the fact that I had such bad webbing/cording makes it more likely. So I am being cautious and doing exercises and massage for prevention. I have only just begun radiation so who knows what is coming... Man I hate this disease. It never seems to stop.



If anyone wants info on axillary web syndrome let me know there are some great threads on this website and another that really help. There are some really smart women that have done a lot of research on it on this website.



Anyway, I am down to 26 radiation treatments to go. 7 done. No symptoms yet. Expecting more next week but so far so good. There was a woman leaving as I was getting there today that just finished her last treatment and there by ends her active BC treatments. She was happy and crying. I can't wait to be there!



I actually feel lifted and happier and better than I have felt in a while since the lymphedema scare has passed (I hope for good.)

mcook301

Jpmom- so glad that your arm is better! And hopefully you can get some rest.



I hear you on gather information- in the last few days I have called my each of my team of doctors to go over information so I can make some educated decisions. These past few weeks have been mentally exhausting trying to make some decisions based on limited data and I just want to know and understand everything I can about my case. At first I was getting the high level details when I first started this journey. At that time I am not sure I was even listening or hearing everything but now I want them to explain in detail my case to me. They were helpful today and I was thankful for this but now it has to be my decision. I have to decide soon.



I am a little bummed because I caught a dam bug today and I could not go to my sisters. I was really excited to go to hear Doctor speak about his adventures with the organization above and beyond cancer. He works closely with my sister and he took the time to call me back a few weeks ago to give me his opinion about my pathology report and radiation. I was so appreciative that he would take the time to call me. He is a rads doctor. If no one has looked up the group, check it out. It is called, Above and Beyond Cancer and they have a web page and also on Facebook.

Aruba

Hi Gang,  Sounds like everyone doing ok today?  Just a quick update as I turned another corner too and had my mapping and first actual rad treatment with that breathing device to push my heart more out of the way.  My tumor was not near chest wall, but apparently my heart is and this is preventing the heart from being in radiation area.  Frustrating part is that since I had the initial appt with RO, have only seen her for a second during the treatments and not even sure exactly how many I am having.  I will ask tomorrow since I have to be there at 8:30 and then to get me in on Friday at 6 PM..really?  gonna see bout that.  Have a good night ladies!  Onward!!

Moonflwr912

Hugs to ramols, Ann, Cottontail, may you feel better. Cotton, try wiping the area with a little salt water. It stings, but I find it helps heal, and use a different tape and remove the old tape really carefully. I have this problem. They had to use a different cover for my port because the tagaderm made my skin red and itchy, it only ripped in one area though. two more weeks of this accessed port, counting down days.....

bevg49

dear charlotte, my friend Linda is on her 14th year of a stage IV diagnosis... She was diagnosed with it at that stage right out of the box... She is a very positive person, spiritual while not necessarily religious, says whats on her mind too. Anyway, the words "stage IV" mean nothing. In the last 14 years, her 2 daughter have gotten married, given her 7 grandkids and she's lived her life. Will she live forever? Nope but no one will and meanwhile, she has lived her cancer years to the fullest. Don't let your hubby and kids get to you. Tell them how you feel. Live life....

Scorcny, I wanna tell you something I haven't told anyone. First of all, I am also overweight, I guess would would say obese. I've lost quite a bit since my diagnosis (not because I am a good person excercising and eating right all the time, just because I've had complications and have not had the appetite).. Mostly, my big secret is this. I was diagnosed at the age of 62. I am ashamed and it's hard to say but I had not gone for a mammo for 7 years.... Why? Well, I went to make an appt. and they gave me a hard time about getting a perscription because they had merged with another place,  or something stupid like that. I got pissed off and I just put it out of my head every time I thought of it. I dodged a bullet in that it was Stage I but still, I felt guilty and stupid also. I realized, though, that it's time to put past shit out of our heads and deal with the now. You don't have BC because you're overweight. Too many skinny women have it too. We all have our quirks. We all do things not in our best interests sometimes for reasons hard to fathom afterwards. Don't be hard on yourself, please. Just move forward with your new medical team, the one YOU want.... 

Cindyl

bev - You might find this of interest http://www.lastwordonnothing.com/2012/02/08/komen/

Scorchy

Bev,

You're the bomb, baby!  YOU ARE AWESOME!

Scorchy

tina_jason

jpmom- So glad for you that it wasn't lymphedema! 

ramols- You made me think about my 16th anniv in March, 5 days after a chemo treatment.  It was my Taxol and it made my legs hurt so bad but I went anyway.  We went to a B & B in Gettysburg and I had a lovely time except the next day we went shopping and I got really bad diahrrea (spelling?).  Anyway, my husband was waiting in line to buy something and I told me there was no way I could wait for him.  I almost ran to the bathroom which wasn't close at all. When I got there there was a long line and I wanted to scream "Excuse me!  I have breast cancer, just had a chemo treatment 5 days ago and now I'm going to crap my pants!" But I waited patiently with all of the other ladies.  When I finished there was no toilet paper!!!  Ahhh...then I remembered my DH (who was my germ bodyguard during chemo) had given me a bunch of antibacterial wipes to keep in my purse!!!! I used them to wipe my butt!! And that was my 16th wedding anniversary!  I hope that brings a smile to your face because now I can actually laugh about it!!!

bevg49

so, what you're saying tina, is that you really had a very crappy anniversary ? LOL..... Sorry, sometimes I think I'm a comedian though no one else does .....Congrats on 16 years.

tina_jason

bev- Ha ha.....very funny!  You truly are a comedian!

bevg49

wow, cindyl.... just WOW...... that article is must reading for each and every one of us. I had no idea. I have an aunt who does not go for mammograms and we all thought her rather odd... Now, I know why. It's a choice. The article was fascinating and didn't make Komen look good at all.....Like the political party mentioned, science is not all that important.... Thank you so much for sharing the link with me. I was so ashamed and never told one person before tonight (except my sis) that I'd gone so long..... It's not our fault no matter what....

Cottontail

Cottontail's Daily Rambling:



About ages.... I also feel like the odd one at the cancer center. The first time I went was especially distressing. Everyone in the waiting room was much older than me, and they all looked very sick. It was so depressing to be there. I saw a wide range of ages in the infusion room when I was getting treatments, which was also depressing.

I'm not into support groups (or groups of any kind, really), so I don't know how the ones here shake out in terms of age of participants.







Still working on stretches. My range of motion still isn't great, but improving a little bit every day. I now have no problem putting any kind of shirt on, but find myself having trouble getting them off again. I had no idea the movements were so different, but I guess they are. The things we learn!



When lying on my back, I can move my arm from directly overhead to maybe 135 degrees. Motion straight out to my side is much more limited and painful. Hopefully I will have just enough motion to do my rads simulation tomorrow. I've also gathered up my normal moisturizers, powder deodorant, and Aloe Plus gel to take with me. I want to continue using my regular stuff, unless there is a definite problem. I'm really picky about cruelty-free, vegan products, and do not want to switch unless absolutely necessary.



I've been focusing on using my left arm normally, rather than walking around with one arm hanging like a T-Rex. I think it's helped with the pain. I now have very little pain shooting down my forearm (I can still feel the line of pain if I press on my arm, but it's no longer restrictive). The line of pain is still present in my upper arm, and I've got a bit of swelling just above the elbow, on the inner side where it's most painful.

My arm seems to feel better if I massage it gently with the heel of my right palm - gently stroking the length of the arm, arm stretched out and palm up. My PT didn't mention any arm massage techniques, so I hope I'm not doing something harmful.

My left hand has some swelling due to an eczema flare up, and it freaks me out every time I close my hands. Then I remember it's the eczema.



I started the scar massage that my PT wants me to do on the incision at the axilla. So far, so good. Very little pain there.



The infected area seems to be healing, though slowly. It's still painful and oozing. I'm cleaning it once a day with the prep kit (wand preloaded with chlorhexadine and rubbing alcohol), and smearing it with Bactine. Taping the gauze in a slightly different place because of the rash. Interestingly, the rash is only on the front (breast) side, area towards my back is fine. I see my nurse for another recheck on Friday.



I also see my MO tomorrow for a 6-week PFC checkup and labs. I am going to ask if they can check my Vitamin D level, too, as I have never had that checked. With all the things that low D can affect, it seems that should be standard but I guess not.





(((Hugs))) for all who need or want them.

juneaubugg

liefie- couldn't agree more. Closing my eyes and counting on the second step to be there tomorrow. Ugh back in the BGC. I HAD ACCUPUNCTURE for the first time today and it was great! My stiff back feels so much better and I can feel the back of my right arm where I have neuropathy. Not totally, but 60% better.



I backed THREE loaves of bread today ladies!!!! Yummy! Counted my MTWTFSS Meds into their boxes, made oatmeal and defrosted chicken soup. I hate how productive I finally feel the day before I get poisoned all over again. In the chair around noon so I'll probably be stalking you all, but not writing a lot. xxoo



Oh. PS. I order shirts for my team to walk in the making strides against BC walk. My friends are awesome. Let's hope for sunshine!!

Cottontail

Cindyl, thank you for linking to that article.

Cindyl

bev - yeah its food for thought for sure.  It made me feel a little less stupid and guilty.  I went in with a lump in 2010. They did a mammogram and u/s.  Said not to worry, scar tissue.  Come back in 6 months.  They were supposed to send me a card to remind me.  They didn't and I didn't.  In 2/2012 I went to my pcp for a pre-op physical.  Doctor (bless her) wouldn't sign off on my cataract surgery until I went in for my follow up.  When I walked in the door the radiologist on duty was already convinced that I had cancer.  We did another mammogram, u/s, and core needle biopsy.  As he was doing the biopsy he was telling me about the cancer navigator at the cancer center, and telling me that my pcp would be referring me to a surgeon (if need be)  anyway...

 I still feel dumb that I wasn't more proactive, didn't insist on a biopsy in 2010, didn't come back on schedule. blah blah blah

websister

Juneau - sending hugs. I will be thinking of you tomorrow. Hope you are able to have a good sleep tonight, glad to hear you had a productive day and that the acupuncture was effective for you.

Take care

Anonymous

cindyl - thanks for the article. Very interesting read.

bevg49 - very well said my dear

tinajason - thanks for sharing your story. It for sure did give me a smile.

jpmom - love your new avatar. Your hair is coming in very nicely! So glad to hear the lymphedma scare is not what you thought it was. Great news!

mcook - sorry about that bug. What a bummer. Hope you start feeling better soon!

juneau - go get 'em tomorrow! We'll all be in your pocket.

charlotte and scorchy - and all others out there who need a hug and everyone I forgot to mention by name: ((((((((((((HUGS!!!))))))))))))

As for me - really trying to change my mindset these days and get out of my funk, but just woke up with a clear case of conjunctivitis in my left eye and feeling pretty bummed about it. When I reported all my cold symptoms to my nurse today, I included a sneaking suspicion that pink eye was on its way - and she said I'd have to come in to get checked out if that developed. So off I'll go tomorrow to be checked out. Just really want to avoid infections and fevers and stay on track with my treatment schedule. Fingers crossed. Alas - sleep eludes me at the moment... 

_Ann_

jpmom, I'm so relieved for you that the arm swelling was a false alarm.  I was hoping that would be the case!

tina_jason, love the wipe story.  I carry those things in my purse for just that purpose :-)

bev, that anti-mammogram stuff is eye opening isn't it?  All this stupid breast cancer awareness only teaches one thing-- get your mammograms, you'll be safe then.  Not true.  I also hadn't had a mammogram for 7 years (I'm 49).  Had only had 2 since age 40.  I was kinda thinking well I probably don't need it since they're changng the screening age to 50 anyway, but mostly just uninformed about the risk.  I thought BC was only an issue for much older women, and women where it "runs in the family".   Turned out my BC didn't show on the diagnostic mammo anyway.  Due to dense breast tissue, my mammograms just show all white, they're useless.  Anyone who viewed my first mammo (at the recommended age of 40) and was informed could have told me this.   But actually this saved me from kicking myself over not having mammos. 

Then I wanted to kick myself for not doing monthly self-exams.  I had an office exam in February, didn't find the lump, then by June it was 3.5 cm.  So did it grow so fast, or did my doctor miss it in the exam?  Could I have found it at stage I if I'd been doing self-exams?  I'll never know. Coulda, woulda, shoulda.  Is it useful to berate myself over any of this?  No!  I'm angry I wasn't better informed though.

Anonymous

Ann - don't beat yourself up over the self exam thing. I played that gave for awhile - as I gave up on self exams a long time ago when I determined I have (or had...) small, weird and alway lumpy feeling breasts. When my doc put my finger on the lump he so easily identified in the office and asked if I'd noticed it before - I felt like an idiot. How had I not noticed that? Sigh... I think there are a lot of mixed camps out there about the value of self exams as well. And as for the dense breast thing. What is it with that? My lump wasn't seen on my mamo either b/c of dense breasts. It was only the sono that clearly showed the problems with what my doc had felt. But regular sonos are not a good screening tool for all people as I understand it - b/c they can be hyper sensitive and result in a lot of false positives and seemingly unecessary biopsies. I wish the research being done would find out more about the causes so we can work on prevention a bit more and stop making women feel needlessly guilty about their own screening efforts. Screening can be useful - but until we get at the root causes, way to many women of all ages, shapes and sizes will have the rug pulled out from underneath them b/c of this sneaky disease. Sigh... On that note, maybe I'll go give sleep another go...