Jan 2008--Ain't it Great?
Comments
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Maz, I had mine put in when I was having my mast. surgery. Sorry I can't give any perspective on having done while awake.
The site was a little sore for about a week for me. Nothing like being kicked in the chest, just tender to the touch. Like it was a bad bruise. I have noted that some ladies have had issue with their bra strap hitting the site, you may want to ask your doc if they can place it so it doesn't rub.
My incision is a little less than 1". I pulled the steri strip off after about a week. I too am pretty thin up top, my port definitely sticks out a bit, its a little smaller than a quarter. I've had mine in since Nov, have not had meds through it yet, just had it flushed and last week my first blood draw. I'm totally used to it now, my doc said its very durable, I was concerned about laying on it etc., he said don't be concerned. I'll be putting it to use starting this Thurs, and I did request a prescrip for EMLA cream to put on it prior to my appt. I am the "biggest wimp".
I think you'll be surprised how non-invansive it is, Carol
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Maz, My sister had a port for her chemo, so when I thought I was going to get one (I didn't) I did a little research on them. Here's what I learned--for what's it worth. My sis was awake for her insertion. She said they completely numb the area and put a little wall up (I imagined it to be similar to the "wall" you get with a C section) so you aren't having to look at anything. She said she only felt pressure and "pulling" sensations. No pain. Sounds like yet another head game--go somewhere far, far away! Ask if you can take in an iPod (that was my plan--I didn't want to hear them chat). Some tips I got beforehand included--wearing your bra to your insertion and show them where the straps go. And draw the outline of the seatbelt on yourself (ask if a regular ink pen is okay--I wasn't sure what to use to draw it on and since I never got the port, I never had to get the answer to that question). My sister said the most annoying part of the port was that it was constantly rubbed by her seat belt (and she even got one of those terricloth pads to put over her seat belt to lessen the rubbing--didn't help much for her). That's all I know. You'll be teaching the rest of us, soon!
For those mourning the loss of coffee/alcohol--cry no longer. I'm here to tell you I didn't want much of either for the week after tx (although I only went 3 days with no coffee--I really can't live without it), but now I'm consuming both at normal levels.
In fact, the only thing wrong with me now (other than the usual complaints from my family) is I am covered with blisters (the ones in my mouth are not as bothersome as they were last week), I'm tiring more easily, I get dizzy going down stairs, I'm as dry as a desert--mouth, eyes, nose, skin, and my scalp is numb. You guys, this is all manageable. Yeah, I went through some bad days that first week after, but for all of us with the every 3 weeks regimen, we'll have two good weeks between tx's. Fingers are crossed that something unexpected doesn't crop up, but we can really do this.So Jewels, start with confidence. Keep a smile on your face. You're beating cancer!!! FUBC!!!
T-shirts. I love the idea. I've been playing with ideas in my head, too. I even thought about "January Jewels" on the back and then list our screen names in two columns under it (or is that too much?), then FUBC over the breast pocket area. I even toyed with the idea of putting FUBC in an arc on the top of the breast pocket, FUSE in an arc on the bottom and then "breastcancer.org" straight across in the middle of our FU messages. But then I wondered if the bc.org folks would be upset with us if we included FU messages encircling their address. Gosh, I hope I did justice to these descriptions. I keep meaning to try to do a rough layout in Word and then cut and paste it here. Maybe one day this week... I did think about heading to a local shirt shop here to get some pricing, but I know my market will be expensive, so if someone in a more economical part of the world wants to check on that, it would be grand. I'm sorry, I don't remember who talked about colors, but I'm not keen on all pink, either.
Hope everyone is doing okay. I know neulasta aches are probably being felt today. Hope everyone is popping max strength tylenol to keep those manageable.
SIS Kimberly--your dinner sounds like it was so nice. I'm very impressed with the chef! Try not to stress out too much this week.
Okay, my college girl is back to reclaim the computer, so I'll chat again tomorrow.
D1
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Maz - I get my port tomorrow so will try to give you an update tomorrow evening.
D1 - I love the idea for the shirts. I am definitely in. If the FU message is too strong around the Breastcancer.org name, it would still look awesome. And thanks for the hints regarding placement of the port. Will I have a choice of right or left side? I really don't want it on the left side as I don't want to take any chances on that side with lymphedema.
Wish me luck. The roller coaster ride starts tomorrow.
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Maz: I get my port the 14th so I don't have specifics... but I do know ports come in different sizes and my surgeon says she matches based on body size-- so maybe yours will do the same. They need to be flushed once a month I was told-- so if you do chemo every 2-3 weeks-- that's your flush. The EMLA cream is to put on about an hour before the port is accessed-- I'm gonna ask for it after my first treatment. I can't use it for my first b/c my port will be a "fresh surgical site" and the cream can't be put on that. They told me they'll spray it instead with lidocaine. Since your surgeon is having you awake for your surgery to place the port, I'm sure he/she will numb the area and hopefully give you something to relax you. I found out my surgeon is putting me under a little bit (MAC anesthesia-- where I'm not under like general, but I'm also not at all aware of what's going on. I had this for my lumpectomy and it went fine). I also was told the side should be opposite where reconstruction was done (so mine will go on my right side. maybe that'll make the seat belt issue better, at least when I'm the driver. I have heard that is a nuisance). My friend had b/l reconstruction and they put hers in her arm. I wish you the best on Friday!
Carol: Cool you can do the shirts!! Let me know later how they run for sizing and I'll give you my size-- probably medium or large. Also if 100% cotton or not (then I get bigger for shrinkage). Kimberly had the specifics on styling... I think she thought of black shirts with hot pink writing and the pink ribbon on there somewhere. The back was gonna say "Sisters in Survival". I think we should add some sparkle somewhere if it can be done since we are jewels (pink rhinestones for the ribbon?). I personally wouldn't want names, just keep it simple. Also the breastcancer.org sounds cool-- but we may not be able to do it b/c of copyrighting and also b/c it advertises the site. But I like the FUBC over the pocket idea.
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Dear Maz
When I got my port they told me I would be awake they called it twilight Anestassia. I was asleep when they put the port in I was told they woke me a couple of times and I talked to them I do not have any memory of it.
The first day after I was pretty sore after the third day things were better. Ask for a script of lidocaine-prilocaine cream. I put it on hour before 1st treatment I did not Even feel the needle.
Hope eveything goes well for you Friday
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Lady Jewels,
I will stop by a local print shop after work tomorrow, get some idea of pricing, style, etc., to pass along. For now I atleast know that we might be interested in having something printed on the front as well as the back. How about black with pink lettering? To avoid the complication of using breastcancer.org, maybe it could say something different but with similar meaning. Okay I'm brain dead to think of something unique.
I'll ask about womens styling shirts as well as the traditional looking t-shirt. I'm up for anything, if anyone is good with computers, maybe a drawing of what would be cool could help, and it could be posted here for others to see.
If I'm not stepping on any toes I'll get the ball rolling, D1 sounds like you had some pretty cool ideas. I'm personally clothing challenged
. Pretty happy with my sweatshirts and jeans!I'll check tonight to see if there is any input, and I'll sneak a peak at work tomorrow to see if there are any ideas,,, looking forward to your postings, Carol
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Good evening all,
It seems pretty clear that birth control pills have greatly increased our chances of getting bc...it increases hormone production which increases the chances of cancer...we were messing with our hormone balances at the urging of our doctors, who didn't know any better at the time, "the pill is safe, it will make you feel better"...and it did.
I stopped birth control pills 5 years ago after a horrible reaction to a generic version of the name brand birth control pill my HMO decided it would pay for as the brand name wasn't covered anymore. Within two weeks of taking it, I literally was incoherant. If my husband didn't keep pushing my doctor to look at the new pill I'd been given...the only new thing in my world...and discoverd the new pills manufacturer had been cited numerous times and that the machines were cleaned with a compound used in pesticides...I would have been in that state for longer than 3 months. People actually said, "I'm sorry" to my husband when he took me to my many specialist appts. I was OK in the morning...but got worse as the day went on...moving was the problem-walking, riding in a car, sitting up for too long-I took all my meds, including the pill for two weeks after symptoms occured, so I had four weeks worth of the poison in me...and then my husband told me and the doctor we were stopping the pill. Thankfully, it was only 12 weeks from start to finish of this horrific experience. I don't remember most of it, but it terrified my family and my poor dh. I was being poisoned. I now have the same reaction to bug spray and other pesticide like things...so I stear clear.
I think on top of the hormones I'd been taking since my senior year in high school, pesticides helped propel me towards bc...my dad was sprayed with DDT as a kid...they played in the fog as it was sprayed in neighborhoods not knowing the harmful affects. He had breast cancer and prostate cancer. And...then again it could be genetic...the BRCA results aren't in yet for my dad and twin sister.
About the t-shirts: T-shirt slogan: January Jewels...Sisters In Survival... with the breast cancer ribbon of course on the front... and FUBC on the back....on black t-shirts for women-more fitted than the boxy man looking t-shirt- with hot pink ink. I'm tired of all pink...black and pink is more powerful...warrior like colors. CarePress.com takes original designs...which means someone with more talent than I on a computer...can design the shirt and upload the design...and choose the shirt and ink you want. We can all order online from the 'January Jewel's Store' and put the profits towards breastcancer.org's research.
Maz, the port is a piece of cake...really, you'll be sore for maybe a week.
Heading off to be a bum...felt kind of out of it today...sinus headachey feeling when I bend over- can't be chemo brain yet...maybe prechemo brain...like perimenopause.
Your SIS Kimberly -
Hi Ladies,
Count me in. I start 1/11/08 AC/T x 4, dose dense. Although I was more scared of starting chemo than I was of surgery (bilat 12/5, immediate recon with TE) I have since found some peace. Reading these boards has helped immensely - knowing that others have been there, done that. Knowing that some go through it well makes me think "why not me?" I'm ready to get started and get it over with!
I'm new to posting having just felt comfortable enough to comment. So many of you are so eloquent and informed, I think I was slightlu intimidated about saying the wrong thing or saying it the wrong way. I since have come to nderstand that we are in this together, and what better way to navigate this journey than with a friend who understands first hand. Thank you...
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Okay so it takes me forever to type a post, looks like Kimberly has sent a post too in regards to t-shirts. I did not even think or know about doing shirts on-line. Let me know what sounds like the best route to go with ... I'm up for anything, off to dinner!!!!
Carol
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billsgirl, I have felt like the "dork" with some of my postings, but you know what, this is a place where I know you will never be judged.
We are all in this together, and welcome you as one of us.
I'm with you, feeling a little anxiety about starting txt, I think it has to do with the timeframe, with surg I knew that I'd feel better soon. With txt you know you have to do it again and again ... but you'll get continued support right here, alot of the ladies have already started their txt and are our inspiration ... my friends and family are absolutely great, but having a group of women going through the same emotional rollercoaster is invaluable!
I say post whatever your thinking, the resource here is impecable!!!!
Carol
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Thanks, Carol. I feel so much better already, just knowing that someone out there knows exactly what I'm feeling. I have the greatest friends and family supporting me, including one fabulaous husband, but the support here is different. I plan to visit daily. Going for my first expander fill tomorrow. Just wondering if anyone doing dose dense also stayed on a regular fill schedule??
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Welcome, billsgirl! You spoke up just in time--looks like you start your tx this week. (I know, I'm not brilliant, but hey, I can blame it on the chemo now! Woohoo!) I added you to our "roll call," but it would be good to know how often you'll have your tx--every 2 weeks? Every 3 weeks? That way we can think about you on your day.
Speaking of adding you to the roll call, KathyL, I'm slightly stupid with the computer tonight. How do I get billsgirl's name in boldface?
Good luck with the port tomorrow, Deb!
Nitey nite!
D1
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Starting 1/11, A/C every 2 weeks x 4, then T - not sure of that schedule - x 4. I'm a bit anxious about Friday so I'd love to hear how all the ladies did last week through til now. Early this week, I plan to pack my chemo bag,med cabinet and kitchen pantry with all the suggestions I've read about here. I have read countless numbers of articles to prepare myself, and I didn't get half as much from them as I did from you and these discussion boards. Thanks!
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Billsgirl, I had my first AC on Thursday, I didn't get nauseas much but I did have a lot of aching. I didn't take anything with me for my first time, mine only took an hour and a half.
I haven't gotten half as much from any of my doctors as I have from this board, it has really helped prepare me for so many things.
My next one will be on 1/11, so you will have company
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Good morning Jewels! Welcome Billsgirl. I'll add you to our list (I guess I'm the unofficial secretary of our group), and D1 (our prez) has put you on the roll call at the start of our thread. D1, to bold face, it's a tiny Bold B in the upper left corner when you type a post. This is a great group and we're all seeming to be doing pretty well so far. A bunch of us start this week and next week. You can post just about anything here- we're an open group and no one's gotten out of line so far! Though we all seem to have a warped sense of humor
, which I personally see as an asset!Love the t-shirt idea Kimberly. I think it sounds perfect. I like the hot pink and black, too. I'm sick of only pink t-shirts! I still might add some rhinestones to mine... It's gotta look good with the new "rack" I have now. I ordered my wigs this weekend... can't remember if I told you guys or not. I got 2 and a bunch of hats/scarves. I'm at work.. so I gotta run. But I'll check in later. Tonight I'm going to the Look Good, Feel Better class-- maybe I'll have some tips for us to share. Has anyone else gone to one yet?
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Welcome Billsgirl....we have a great bunch of ladies in this group from all over the country!
KathyL-i go to my look good feel great next monday before my dr appt. I am excited about it. they give a ton of makeup and brushes and stuff. I assuming we bring the wigs so they can help us with them...keep me posted
it is my first full day back to work today..i can't complain yet..it is going to mid 60's today for pittsburgh that is warm and we are all going to catch a cold ( i started already) still got a sore arm, got my period, catching a cold, probably starting chemo next week...WHEN IS ALL GOING TO END!! lol sorry had small meltdown, actually can't wait for the period thing to go away.....
t-shirt ideas..we need FUBC (THANKS D1)" sisters in survival" thanks carol
i am thinking Jan jewels on front with some stones on it...
sisters in survival on front and a big ribbon on back with fubc on top and all of our names inside the ribbon......thoughts?
Gotto go back to work...have a wonderful day Jewels
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Ladies, re: T-shirts
I'm off to work this morning, 6:00 am PST, I'll get a chance to check in around lunch.
I thought I'd atleast start by getting a price, and look at what our local shop offers for styles.
Thought about names, makes it kinda hard if we get some new members throughout the month unless we wait a few weeks.
Carol
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I meet with the medical oncologist tomorrow, but I'm assuming I'll be starting chemo by the end of the month. I had my port put in last week when the surgeon had to re-excise the lumpectomy to get a larger margin. I have been looking at this site for several months as I've prepared for various tests and surgery and have gained a lot from it.
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JJ,
Well I am back with the living, really rough weekend, with nausia and horrible headache. Talked to my dr yesterday she called some more prescrip. in by last night I was feeling like a 1/2 person. I am doing the dose dense ac and t along with neustia shot. I keep reminding myself this is to live.....and I want to live so throw everything you got at me because I can do it. Pretty emotional this morning and I really don't know if I am spelling everything correctly. I sit here and I am crying like baby and really appreciate everyone support, I am just an emotional wreck right now BUT I WILL GET THREW THIS..... I want a tshirt for sure so let me know what is decided etc or if I can help in anyway .
I send out all my support to everyone one of you, sorry not mentioning names but I am a big wreck this morning but I at least feeling a little better physically
Arizona Donna
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AZDonna--Good to hear from you. I SO SORRY you had a bad weekend. I know what you mean about reminding yourself that "this will make you better." I did a lot of that, too. Are you doing just AC + neulasta shot now, or are you doing your whole cocktail of TAC + neulasta? I've heard the latter can be a real ass kicker. If it's unbearable together, maybe you can talk to your docs about doing the AC first, and then 4x of just the T. I'm a firm believer in being part of our own med teams. I figure it doesn't hurt to ask the questions. Maybe it'll cause them to look at your solution from a different angle. For now, keep the tissues nearby for any meltdowns and eat lots of small meals to control the nausea. Sipping anything with ginger in it REALLY helps. I've been doing just that non-stop and haven't had any nausea issues worth mentioning.
Got some errands to run while I have access to the car, so I gotta go, I just felt compelled to talk to AZDonna for a minute. Hope to be back later today.
D1
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AZ Deb...I wanted to speak to you first...welcome back to the land of feeling human...or 1/2 human. Feeling crappy sucks..but you've got the right attitude...tears and all!
Dose dense meaning? I will be doing all three AC and T at the same time...does that what dose dense means?
Billsgirl and CathyCA-Welcome. You've found a great group of gals here...there is never the need to edit what you say or feel you'll say something wrong or in the wrong way...here is a safe place because it is us...your sisters...we'll understand because someone here has been there and done that and paved the way for the rest of us.
Diana 63-Welcome back...glad you're feeling up to posting. How's the achiness?
KathyL- Heck yeah show those girls off!!! Rhinestones are perfect....just the right look at me touch. :-)
I haven't even looked at wigs or thought about hats and scarves past the thought...I'm going to shave my head rather than watch all of my hair fall out everywhere like I'm shedding or something..."Oh, pardon that clump of hair that just fell into my soup...chemo" :-) I'm looking forward to hearing all about your Look Good Feel Good class....I haven't had any info on classes as of yet...maybe at my first chemo tomorrow I'll get that info. Thanks in advance for sharing.
Carol- Thanks for taking on the whole t-shirt quest.
Vettegal-Good luck with your first FULL day back at work. I'm just aching for you thinking about how much you'll have to use your arm...mine were aching yesterday by the end of the day, and I wasn't working. Just lifting my soup spoon to my mouth...went out to lunch with the dh... was ouchy. Oh, and about starting your period, going back to work fulltime, and catching a cold...melt downs are allowed. You've had good news lately and a lot of fun with new wigs... think of it this way...you're getting all of this unpleasant stuff out of the way all at the same time instead of one thing right after the other...and you can't really appreciate those good times without these little crappy ones...does that help? Cliches are always good for times like this. HaHaHa
Well, I'm off to eat something as I start my Decodron today....and can't take it on an empty tummy. And oh, I can't have coffee (whine)...I'm drinking peppermint tea...it's good, but it just isn't the same. I am so blaming my caffeine withdrawals on prechemo SEs. FUSE!
Have a good day or sleep well depending upon the time zone in your world.
Your SIS(Sister In Survival)
Kimberly -
Kimberly, I like the idea of ordering t-shirts with proceeds going towards breast cancer.org, I pulled up the website CarePress.com and can't quite figure out where to go next. It would be much easier for each of us to order online. Back to work for now (this work really gets in the way).
Hoping I can check back in after a while., Carol
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I had 4x AC thru 9/07 and 2nd lumpectomy on 1/3. Waiting results to see if surgoen got it all. i saw onc today and set me up for 4X Taxotere while we await results with a start date,if all is go,of 1/24 My hair is now 1" and would like to know if I'll lose it again? I had a really hard time with last two AC with nausea and am wondering if this will be any easier? I was on steroids for four months and gained 20lbs. Is weight gain a side effect? Thanks
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Oh well, I keep hitting lousy luck with statistics.
ER/PR negative. HER2 still pending, probably positive.
Just another crappy piece of news to wrap my mind around.
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AZDonna - Sorry that you aren't feeling well but glad that new (or additional) meds seem to help some. Hope it continually improves.
Welcome Billsgirl and CathyCA. You have found a good place for info and support.
LJ13 - Sorry about the stats but there is a lot of info out there about triple negative. And don't be scared about the statistics for that either. There was a Mayo study that said that something like 35% of triple negative women NEVER received chemo and I'm sure that affected the numbers some. If I can find the link, I will try to put it in here later. There is also a good article at breast cancer watch digest. If you google it, you can get the link. The link wouldn't work when I tried to put it in here. Keep your head up. I know it is easier said than done but being positive sure helps how you feel.
Ok my port is in and it really wasn't bad except that my nose seemed to be a good leverage point?!?
Really though, it went well. It is on my right side and my neck is sore and it is hard to turn my head to the left but that might be because it was in the same position for a while. I am back home and am going to be lazy the rest of the day. Possibility of storms this afternoon and I love to sleep during storms. -
LJ13 -- I'm triple negative. Everything I've read indicates that triple negatives respond well to chemo, so I keep using that as my motivation.
Deb -- I had my port put in last Wednesday and it hurt for the first few days, so make sure you take pain meds if you need them. I'm doing better now, so the pain doesn't seem to last long.
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hey kim-i am at work right now and i could pass out behind my desk..i work for a plumbing showroom and the phone is ringing off the hook and all my customers/plumbers are coming in. my headset on my phone is the hardest thing to put on because of my arm, i do this headdown and put the headset on..looks like i am ready to crashland on a plane or something...LOL
Deb-sleeping during a storm is awesome!! My dh also thinks sex during a storm is great also..sorry he had to put his 2 cents in.......
so far i haven't heard anything about me and a port i hope i don't need to have one.....the thought of another surgery would be killing me....
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Hi girls: Done with the workday. 3 more to go! heading to my class and will check on everyone tomorrow.
Billsgirl: I think dose dense (DD) chemo means every 2 weeks.
Kimberly: Let me know how your belly did with the decadron today. I start mine next week and have a terrible stomach.
LJ13: Let us know what you find out about HER2 status. I am er/pr- and her2+. The good thing (if there is any) is that herceptin works great for that type of BC-- it the miracle drug evidently. I'm doing it for a year.
D1: I added Billsgirl to my list (as you did). I also added Cathy-CA though we don't have info for her yet.
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Good luck tomorrow SIS Kimberly and Deb!!!! Feel those good vibes coming your way! We're with ya!
SIS Kimberly--Not sure if you're on the same plan with the decadron--I take 2 the day before, day of and day after. My onc told me not to take the second one anytime after 3p so the jitters that the steroids cause wouldn't interfere with my sleep. Just thought I'd pass that along. Oh, and drink lots and lots of water!
Vettegal--you sound like me on the port. I am SO AFRAID of needles, but was sick and tired of surgery, so when given the option to do my tx via IV, I went for it. I think if you're getting more than 4 tx's they may steer you to a port, but you should ask about doing it with an IV, if that's what you want. I hope work didn't kick your butt too much today. Put your bad arm on a pillow when you get home and fire up the heating pad for those scars and have the dh bring you a glass of wine. You need to relax.
LJ13--seems to me there are some positives to being negative (hmmm, did that make sense?). I've read that once you get through tx and the first 5 years, that you're actually in better long term shape than those of us who are er+/pr+.
KathyL--Rhinestones for those new girls? Oh yeah! You almost make me jealous that I only have a boob and a half (that sweet little Frankenboob!). You should make those babies shine! And what a total dweeb I am! I was all over my toolbar at the top of my screen trying to figure out how to boldface and it was right here the whole time. Thanks for the assist.
I have my biannual gyn exam in the morning. Not sure how I feel about it. A little weirded out at the prospect of taking Frankenboob out for a show. I know this guy is my doc--and has been for almost 30 years--but he hasn't seen me since he sent me to a surgeon last May. (He did call several times after I was first dx to make sure I was okay.) It'll definitely be "deep breath" time. Not sure why I felt like sharing that, but it's been on my mind all day.
For the record--what is sex??? I've been married 25 years and I can't remember the last time I actually realized I was being intimate during a storm!
You guys are great!
D1
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D1-am i allowed to use a heating pad? I was really never given anything to say what i should and shouldn't do....i would love heat on my shoulder and under my arm? Yes, wine would round off this evening quite well!
What would I do without these wonderful women on this board?
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- 50 Immunotherapy - Before, During, and After
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