Mastectomy Sept 2011
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Olga--- I am praying that they get iv antibiotic take care of it for you.
I hope everyone has a good weekend. Tomorrow I will be representing us all at the Susan G Komen race for a cure in Charlitte.
Today I meet with my BC we are good to go Tues. By by boobes.0 -
Um, Odie? Whine away, girlfriend. If you can't whine here, where the heck can you whine? Drains suck. I'm sorry they couldn't yank yours today . . . I will keep my fingers crossed for you for next week. Then we can all do a little t-rex arm flapping celebratory dance!
xo
Sarah
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It's October! We are done September group! Hopefully the worst/hard part is done.....
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Buh-bye September, 2011 - a month we'll never forget. We do have two sisters going in this week - hope you two are doing something nice and are feeling ready to go . . . .
So Monday will be 2 weeks from surgery for me - I am definitely doing better, but the fatigue is still crippling. For those of you who had surgery more toward the beginning of Sept. - when did you notice an uptick in your energy? My rash thing may have set me back a bit, but I feel like I still need 2 naps/day.
Sarah
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Sarah, I still take a nap most days. I will say, since my follow up surgery last Wed., I feel better than ever. Gettin the last drain out, and the repairs that were made, were exactly what I needed. I really noticed the improvement after then. I think your allergies maybe have messed w/you a bit, but give it time. I was very antsy, like you, but you'll get there, and nap away girl!
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Hi
I'm 11 days post surgery & am still very tired. I also still have quite a bit of pain, mostly the armpits. It gets worse at night ( isn't that the way it always works?).
I had a few set backs but my cold is nearly gone & yeah my drains were removed yesterday. BS said I'm healing well. She shared the pathology report & said I'm Stage IIa due to size of bc. The margin was alittle tight on the right but they aren't too concerned. They found the pre-cancer cells in the left but praise God the nodes remained clear.
I also met my oncologist & she wants to have the Oncotype DX test done to determine if I would benefit from chemo. Any ladies have that & can provide feedback.
Will for sure have Tamoxifen/Aromasin depending on my hormone counts. I'm on the edge between pre- and post-menopause.
I am so thankful the surgery is behind me & the pathology was hopeful. Thank you to everyone for this forum. I have read many posts & they have educated & encouraged me. I'll stick around to learn more & try to support others just beginning this journey.
xxoo
Deb0 -
Txs., Lori & Deb - my surgeon did warn me about this - she said I'd probably feel pretty good pain-wise but that the fatigue would be surprisingly strong. I'm not a patient person. And yes, Lori, I think the rash set me back - have used none of the super-duper itchy cream yet today, though - coming out of the woods on that one!
Deb - so glad your path is hopeful and you have a plan to figure out next steps. I can't help you w/the oncotype stuff b/c it wasn't around when I had my first go-round w/BC and got chemo - then they just gave it to anyone who had invasive cancer - and b/c I was 32 with a 1 cm, grade three triple-positive tumor and some evidence of vascular invasion, they were all freaked out about mets. I think it is SUCH a great thing that treatments can be more targeted now - this is all such a burden on your mind and body - why go through stuff that might not benefit you?
Hoping everyone has a good day today. I just showered myself (and washed my hair too - a first!) and so now I'm back in bed. Just ridiculous. But necessary, I guess.
Hugs all around,
Sarah
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Sarah- I'm just over 3 weeks and there are still days where I need a nap. If I don't nap during the day I'm exhausted at night time. I deffinatey have more energy but tire easily. I'm doing everything around the house and run errands. There would be no way that I would have the energy to be busy all day.
Deb- sorry to hear you had a cold. I have been lucky so far to avoid one. Both my kids have had one and I didn't want to catch it.0 -
Paperwork overload...I spent a good 30 minutes reorganizing and filing every piece of paper I've accumulated since being diagnosed. This sure is a paper intensive disease!
I have never been a napper and only napped during my first two days home from the hospital but I am still wiped out by early evening.
I am, however, still having a lot of tightness in my chest and am always aware of it.I also, periodically, having little zinging sensations on both sides of my chest and my nipples sometimes have a weird tingly sensation. I wonder if this is phantom type sensation or nerves regenerating. I would hope that I will eventually be completely unaware of my chest. Hope everyone is doing well.
Caryn0 -
Just back from the Susan G Komen race for a cure. There were 16,000 people there and 1,000 we survivors. It was uplifting and an emotional day. With that many people there I was surprised to run into my OBGYN, ONC Dr and BS.
I hope all you ladies are healing nicely. Sending you all gentle hugs. I am enjoying my last weekend with my old girls and anticipating the new girls I will get Tues
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Hi All,
Thank you for the well wishes and words of encouragement. My surgery was actually Thursday and I ended up staying 2 nights, so just got home today. I am feeling pretty good. I still have the two drains in and mydischarge papers say I cannot shower until they ome out. I am bummed because I stink and want to wash my hair. A couple of old friends are coming over later and I am going to ask them to wash my hair in the sink!
I only took off two weeks from work-will that be enought time?? I teach and am so worried about my class. I plan on taking off for Chemo for the duration. All of this "unknown" is so confusing. My biggest fear about the surgery was the anesthesia, which wasn't so scary, but the nausea after was awful!
Caryn-Yes we are neighbors. I am also with Kaiser, SSF. I am having a great experience so far. How about you?
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Margie that is great to hear. I am considering doing our local Race for the Cure IF my endurance is built up enough by that time - it is two weeks from today. Hubby will run while I walk. We've both run it before in the past. I can only imagine how uplifting the experience will be do it as a survivor this time.
I went out for my first outing to visit with friends today. It was so great! It did poop me out more than expected, and I napped this afternoon for a few hours.
Had a little scare this morning after my shower when part of the scab on my R nipple (nipple sparing mast) came off, and the nipple started bleeding. I was so scared, but it did stop bleeding pretty quickly. I have been afraid the nipple will survive, but I think it is going to as there is healthy pink skin under the scab. I really need to be more careful. Just an FYI to all to be cautious in the shower and drying off.
Bayareamom - welcome back and so glad you are doing well! Getting my hair washed by hubby made me feel human again. So sorry to hear about the nausea, uggh. Regarding time off from work, I know everyone is different, but I plan to take 4 weeks off. I'm only 1.5 wks out, but I am still quite fatigued and definitely would not be ready to return to work by next week.
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Bayareamom,
I am a teacher too! I teach first grade. My surgeon gave me 6 weeks off for surgery because I had immediate reconstruction and my onc says I can't work during chemo because of compromised immune system and the poor hygiene habits of first graders:). I go to Kaiser Santa Clara and have been pleased with my care. I took a pt/ lymphedema class and chemo class there and they were both good. They also have a bc support group which I haven't been to yet but plan to. Very happy to hear that you are recuperating well. Take good care of yourself and feel free to contact me. Caryn PS: I went through a lot of body wipes before I was able to shower.div class='post_sig'>Bilateral mx 9/7/11 with one step ns reconstruction. One nipple will have to go due to dcis too close to areola
Diagnosis: 7/8/2011, IDC, 4cm, Stage II, Grade 1, 1/15 nodes, ER+/PR+, HER2-0 -
Hi all - checking in before I hit the rack - I am pooped.
Caryn - yes, there is SO MUCH PAPER. Not as much as in my binder at MGH, though - I look like an old lady that thing is so thick - lots o' history there for me. I am also getting zinging and twinging and my breasts are changing shape . . . not sure I love what I see when I'm naked - they do look just fine when they're in the bra though.
Margie - the Race sounds like it was awesome! I did it for a few years after I was dx'd in '01 and loved it. It's really inspirational - glad you enjoyed . . . enjoy your time w/"the girls!"
Dancetrancer - good for you for getting out! I have yet to have an outing that's not to the hospital. This is my week to start being social, but the party's comin' to me. Re your nipple scare - I have read many posts on BCO about nipples turning black and then peeling and being normal again. Mine are OK looking - but my scar on lefty has a wide black part that is pretty freaky looking - that might be what PS is going to get after in two weeks . . . .
Bayareamom - glad you're out of the clink and on the mend - but sorry about post-surgery nausea. My male nurse told me that my bad rash was karma payback b/c I had NO nausea at all post-op!
OK, another random question for you guys - anyone feel like they have plaque on their teeth that they can't get rid of post-op? I use an electric toothbrush and am used to very squeeky-clean teeth and in the last 1.5 weeks I feel like no matter how much I brush, there's fuzz . . . . random, I know.
Hope everyone has a good evening - rest well!
Sarah
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Hi Everyone! So good to see everyone's posts. Sorry I haven't posted since my surgery a week ago Thursday. I'm having that exhaustion that you're experiencing, Sarah. I actually started typing a response on my iPhone on the way home from surgery, and then lost it. I just didn't have it in me to start over -- and here it is almost a week later. My surgery and immediate reconstruction went well. I ended up staying in the hospital for three nights, too much pain to come home. I've been healing well, but I have that tightness in my chest that people talk about. I suspect the tissue expanders. I couldn't figure out what the weird ridges were above my breasts until after the ps took out my drains on Wednesday and, poof, the ridges were gone! I was so excited to shower and wash my own hair this Thursday, that I overdid it. Then I had a lot of breast and armpit pain. So much that I called my ps and got a scolding for overdoing it. Now I'm forcing myself to be a complete sloth. Hard to do. I'm used to accomplishing things, but as you all know, now's a time when our bodies have their own agendas. Got my path report: mostly good news: no cancer in the lymph nodes, but some atypical ductal hyperplasia in both breasts near the saved nipples. Does anyone else have that? My doctor seems to not be terribly concerned about it. I'm sad, though. I thought I'd made the big difficult decision to have a double mastectomy and then I'd be done. Feels weird not to be quite done.
Best wishes to all of you who just going into or coming out of surgery. May you heal quickly and thoroughly. As someone said (maybe it was Sarah?), so glad that September is over. It's a month and year we won't forget. xoxo, Therese
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Hey all!
Checking in for the first time since my NS BMX on Tuesday the 27th. I will start by saying that besides BC, I'm in good health. I've never had health issues. The surgery went ok, but in recovery I asked the nurse when I would go to my room. She said it was an out patient procedure and I was going home. OGM, it was the closest I have ever been to a panic attack. She kept insisting it was no big deal and I was going home. So while I was still pretty disoriented, I was disagreeing with her and my blood pressure shot up. Since my surgeon was already in another surgery, they brought the anethesiest back to try and calm me down. They also brought my Mom in so she could handle the nurse. I'm not really sure how it was resolved because I was so out of it, but while still there another doctor was concerned about bleeding on one side and had to go back into surgery again to correct something about a blood vessel. Thank goodness that I had a different nurse when coming out of that one. Then just had to wait for a room to become available.
Thought things would be better when getting to the room but had a nurse with a real attitude. She was very snippy even with simple requests. That night I was in so much pain and asked for more meds. She just said sorry it's not time, doctors orders. I started crying and asked her to get the doctors. Well she did, the doctors came and I got meds and a new nurse (with out having to ask). Morning finally came and I got my new nurse, Abigail, who was an angel for the rest of my stay! My faith in the nursing profession was renewed. The new nurse on the night shift was great too.
On Wednesday I got the catherter out and could put on panties and PJ's. Just that made me feel better. My sister stopped by and helped brush my hair and sprayed on dry shampoo. That worked so well taking out the oil and making it look normal when I can't do the whole wash and blow dry. Well, the doctors had been watch blood levels and said I would possibly need a transfusion. My veins were being very protective of the blood I had left. Between IV's and getting blood to test the nurses/techs could only get a vein about 40% of the time. My hands and arms have so many pricks. That part got old really fast.
Thursday morning the doctors said my blood was at a critically low level and recommended a blood transfusion for a couple of units. The doctors and nurses gave the list of side effects, but let me know that these seldom happened. So, after signing the consent, the transfusion began. An hour later my temperature spiked and I was having an allergic reaction to the transfusion. I had so many doctors and nurses in the room during the next hour. Thank goodness, the high temp was the only thing I could feel. They did tests on the blood, but never figured out why I had the reaction. About 12 hours later, they gave my tylenol and benadryl then started the transfusion. This time the transfusion went well.
I woke up Friday feeling better and had a lot more energy. The doctors wanted to monitor my blood levels and wouldn't tell me if I would be discharged that day. I needed no morophine and was just on percocet for pain. They also started giving me muscle relaxers which help the "pressure" feeling on my chest. The doctors are also pleased with the look of the boobs. The nipples look ok, and I have hopes for the breasts as the expanders fill more. About 5:00 on Friday I got the ok to go home!
During the stay in the hospital, I napped a lot but got no real sleep. Friday night I slept 9 1/2 hours. I was up a few hours on Saturday then slept another 3 hours. The sleep is helping me feel much better.
It's been good to see how everyone is progressing. Your stories and tips have been so helpful this past month. Thank you all so much!
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Therese and Hope - so good to hear from you two!
Therese: sorry you're super tired too, and so sorry about the path - I'm assuming this means the nipples will go? Caryn has had a similar issue on one side. It just plain sucks - you want this to be over, so badly . . . but wait! there's more! Ugh. Don't have any advice except 1) have read a lot of research on atypical hyperplasia and it's something I would have excised if I had leftovers (insisted on this in '01-'02 when I went thru my first round of BC, then the data wasn't as good, but good enough for me and 2) take it day by day. We are here for you.
Hope - OMG. I literally read your post with my mouth hanging open. What the heck? Outpatient? And thank goodness that didn't happen considering the ordeal that ensued once you got moved to your room!? I am so glad you're OK. That is some scary stuff. I'm glad your reconstruction's looking good and that you are finally able to rest. Hospitals, ironically, are not the best places for sleeping. Keep up the good work - your body's been thru the wringer.
All - I had a terrible night. Not much sleep, terrible headache, really swollen, sore foobs . . . finally got up at 5:45 and came down to drink a bunch of water, make some tea, try to shake the headache and what do I discover? Got my period. A day or two early (thank you, peri-menopause). I feel like a truck hit me or I have the flu or something - thought maybe I ate too much salt yesterday, etc. but nope. Mother nature. Forgot all about this in the shuffle of surgery. Such a pleasure.
Going to take it very easy today . . . hope you guys had a restful night.
Sarah
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Sarah- on October 30 there will be a 5K for the Susan g. Komen fund. I'll do it if you will! We can probably walk it!
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Therese - great to hear from you! My doc said I had some hyperplasia on the L side (my DCIS side). I don't know the details - waiting to read the actual path report. Are you afraid the hyperplasia is too close to the nipple? I couldn't have the nipple spared on the L due to the DCIS being too close, but I did have it spared on the R.
Hope - great to hear back from you, too! Wow, what a scary experience you had in recovery. That nurse! I woke up to someone trying to take BP in my left, post SNB arm - I started yelling out "no left arm, no left arm!", and I heard some other nurse say "Yes, the precautions are right there on her bed!" CRAZY.
And then you had another bad nurse? Gosh! I'm so sorry for that! The nurse you have makes all the difference in the world. Unfortunately, there are many bad ones that really should leave the profession. Thank goodness for the good ones!!!!
Oh my goodness, I'm obviously typing as I'm reading your story. Transfusion and reaction to it??? Good gracious woman! I can't believe all you have been through. So glad you are home now and getting good rest!!!
Sarah - blech for the poor night and early period. Oh joy:-( Hope you get some good rest today!
Lorraine
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Oh Groovy, I dunno . . . I'm on strict physical restrictions for 6 weeks, which puts me after Oct. 30. I'll see what PS says in the coming weeks - if she gave me the all-clear, I would LOVE to do it w/you! Just so worried about messin' up my reconstruction, etc. - but also worried about deconditioning, etc. Definitely wouldn't run it - running days are over b/c of bad joints, but would love to walk. So let's see?
Lorraine - yeah, I was worried the hyperplasia was too close to your nipple, but you've got no nipple there if I'm reading right (remember, little sleep last night). No radiation for you, right? See what the path. says - might be miniscule.
I had a mini-meltdown already today. Need to have someone slap me - hubs did a virtual one but I'm just pooped and down. Need to get absorbed in a book/movie/NYTimes or something. Tired and sore and whiney. Off to get an attitude adjustment.
Sarah
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Sarah - Yes, no nipple on the L - he just saved a small amount of the aerola to help with nipple recon down the road. He said he tested the area under the aerola and felt it was safe enough to save what he did - I sure hope so - gotta trust the docs' judgement! I knew he wouldn't be able to save the nipple on the left from the get-go b/c the DCIS was just too darned close per the mammo. And yes, no radiation or chemo. I am getting a second opinion on the pathology by my docs up here in Alabama - that was my plan all along, since I so respect UAB, and they have been so thorough. That will give me extra peace of mind, since I was told the posterior margin was close to the pec muscle, but no further tx is needed. Can't be too careful and a second set of eyes and minds looking at this will make me feel much more confident!
Sorry for the mini-meltdown, but I'm not surprised since you had a poor night's sleep and likely are PMS'ing! Distraction sounds like an excellent idea - always helps me snap out of a funk!
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Hi Ladies
Had a great first night home from the hospital. My bed never looked so good!
Question: What does it feel like when they pull the drains out? When do they do it? When there is no more drainage or just very minimal?
Also, did you guys go out with the drains or did you wait until they were removed? The kids are having a scout meeting at the park later today and thought I might stop by...wear abig sweat shirt or something. Can't wait to get them removed.
Caryn, I teach second. Love it! Plan to go back for a couple of weeks inbetween this surgery and chemo, although right now, I am not sure WHAT I was thinking!!
jeanne
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I went home with four drains-2 on each side. Two were taken out one week post op when drainage was less than 30 cc a day. The remaining two were removed a week after that when drainage was less than ten cc a day. You really don't want a seroma! The first time the drains were removed it was uncomfortable because I did not know what to expect. Second time around- piece of cake
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Oh Lorraine, that's great you're doing a second op - that'll make me feel better! And yes, you do at some point have to trust your docs - the main reason I went ahead w/my BMX and not two little lumpectomies is b/c my beloved oncologist of 10 years really recommended it - and you know what? What he thought was going on in there was exactly what it turned out to be. Vindication. I did NOT WANT A BMX, so happy it was justified after all.
Jeanne - I had the same scenario w/drains as groovygirls - coincidentally, same group of docs - but some women need to have drains in for much longer - it just depends on how long it takes your body to stop producing so much fluid. I actually could've had all 4 removed after 1 week but they couldn't believe it and were worried that it was too soon (not normal!) and so they left 2 in for a few more days - so 3 days later and w/i 10 days of surgery, I had all 4 removed. None of mine hurt at all. And man, it is SO nice not to have 'em. If you are up for it, go to the park! Just be careful not to over-do . . . . so glad you're feeling good!
Today has gotten better for me, thank goodness. Took a nice nap after lunch, had a visit from my mother (not always a good thing, but today it was!) and am looking foward to a delcious dinner of kale & white bean soup my Italian friend cooked up and brought over, unannounced last night. Just made my husband & daughter take me out for a little ride - good sign that mama's getting sick of the house (although seatbelt is still not my friend - I'm not ready to drive myself yet).
Sarah
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Bayareamom - they pulled my drains post-op day 8. I had 2 drains. I was down to about 10 cc a day, as the others said. I took 1/2 a demerol prior b/c I had heard while most people do not find it painful, some people do. I had a decent amount of pain with each one, but it was quick and over with before I knew it, and the pain did not last. I was so happy to get them out I didn't care if it hurt, LOL! (I had a lot of pain from my R drain and couldn't take a deep breath, especially the last few days they were in. I believe this is probably b/c I am very thin in the trunk area - you can see my rib cage - so no cushion there for the drain...ouch!)
I didn't go out until post-op day 6, and that was to the MD office. I'm amazed you have the energy to go out already - so glad you are feeling well but take care not to underestimate how easily you might fatigue with activity.
Sarah - so glad you concur with me getting a 2nd opinion - I don't want to take any chances! Your oncologist is one smart cookie. So glad you made the difficult, but right decision to have the BMX! And yay for your day getting better! My friends brought food over for me today, too - yummy corn, white bean and turkey sausage soup as well as this wonderful chicken/rice/pecan salad with arugula...and a bowl of fresh cut up fruit...WOW! I told them I felt guilty accepting all this wonderful food especially since I now feel I am up to cooking - but they told me "this is the Southern way, this is how we help - take the food!" LOL Feeling so fortunate to be surrounded by wonderful friends that care for me like family, especially since we have no family here. BTW, I'm not driving yet either - don't feel like I have good enough arm strength or motion yet - but getting closer. Today I went for a 15 minute walk and actually broke a small sweat...it felt soooo good! Can't wait til you are allowed to do that - I know you are an avid exerciser like me and really miss it!
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Oh Lorraine, I am so jealous of your brisk walk. All docs seem to have diffferent views on this, and my PS is so strict - I mean 6 weeks? But you should see her, she is a hard-core exercise freak (which BS told me she was, too) - she was VERY stern w/me initially and even last Thurs. about this and said I was NOT to play fast & loose or I'd set myself back further than the 6 weeks. So I'm sittin' on my hands. I will DEFINITELY be going crazy before this is over.
Also - FWIW, I have no extra padding in the trunk area either - rib city (which is why PS was so concerned about saline implants for me) and so I think it's drain placement rather than trunk padding that governs the pain - I never had all that trouble you did w/the breathing, etc. - I think yours were in tough spots! So glad they're gone.
Our soup was OUTSTANDING. Hubs made a spinach salad w/fresh figs, cut red grapes, walnuts, goat cheese and a dressing of fig vinegar and olive oil. Fresh bread & butter (yes, this health nut does eat buttah!) and oh my goodness, I am set for the evening.
Hope everyone rests well tonight. I'm 100% better than I was this a.m. - just need to remember what a difference a few hours and a nap can make at this stage of the game!
Sarah
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And Linda - if you're still checking this thread - I am holding you in my thoughts for tomorrow! Hope all goes smoothly for you . . . .
Sarah
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Sarah - how interesting about the drain placement and the ribs! So I just must have had them in a bad spot. Ugggh!! So glad that is OVER. Isn't it weird the variation in the MD's restrictions? Mine let me get on the recumbent bike post-op day 7! I would be going NUTS with the 6 wk restriction...but I would be following it diligently as you are. We had different types of recon's, so I suspect that is a big piece of the difference.
Oh, oh, oh -that salad sounds AMAZING. Add goat cheese and walnuts to anything, and I'm sold!
And yes, best wishes to you Linda! I keep thinking today is Oct 1...it's the 2nd! Time sure is flying now that I'm not on a countdown for my surgery!
Lorraine
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Greetings to you all. You have been in my thoughts and prayers. It has been an exceedingly hectic 2 weeks with conference, travel, trying to tie up loose ends, and I am so sorry I have missed a lot of what has been going on with all of you. I will read back through all the pages, but for now hope those of you with complications are improving daily, that all of you are healing. I have a 6 am check-in for tomorrow, 8 am injection, and 9 am surgery. I will check in with you all when I am back online, and am sure I will do well. You have all been such an inspiration to me, my fear and anxiety levels are so much lower than they would have been without you. Thank you thank you thank you!!!!!!!!
Hugs to all, Linda
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Hugs back Linda!!! Looking forward to hearing back from you when you are feeling up to it!
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