Lumpectomy Lounge....let's talk!
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Peggy - I'll track down the Breast Book - thanks for suggesting it. I've been relying on the internet for info, but it would be a lot better to have a good resource. I always feel calmer when I have the facts at hand.
Montreal is a great city! The island of Montreal is very bilingual ... sometimes people switch back and forth between the 2 languages within the same sentence! Usually you speak the language you feel comfortable in, and the other person follows your lead. People are pretty accommodating. I love it here!
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Abracadabra, welcome. I echo what everyone else has said. This is a great support group. I too had to have 2nd surgery because they didn't get clean margins. Just take it one step at a time. Stay busy so you won't think. The waiting is the worst.
DH & I took the motorcycles out today enjoying the good weather.
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Thanks, Trish. You are right about the waiting being tough ... and it seems like it's all I've been doing since that first questionable mammogram set the ball rolling. Waiting for the next test, the next doctor's appointment, the next set of results, etc. I'm sure that I will feel a sense of relief when I have a treatment plan in place.
You ladies are working your magic ... this is my 6th post, and with each, I'm feeling more and more at ease. I think that this support group might be just what the doctor ordered!
Thanks for your kindness.
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Houston I planned for 2 weeks off. Only needed one but I think planning for 2-3 is wise.
Trish I'm 1 month 1 week out from rad's... Last week and the week before where the absolutely worst for (non-steroid withdrawal induced) fatigue through all of this, it's starting to get better now.
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Abracadabra I worked through chemo and radiation, i was on 3 week cycles and took off 3-4 days (on my chemo weeks) then worked the next two weeks. It was very doable (and my employer worked with me to make it doable). I'm absolutely not saying you should....just that if you really want this job, don't assume it's impossible. It may not be!
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Thanks Jill for the encouragement. I'm 3-1/2 weeks post rads. So maybe not too much longer. But, I keep reminding myself to be thankful that this is all I have to complain about now
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Abracadabra, we love Montreal. My DH was sent there on a business trip once and took me with him. I had no trouble communicating with anyone, even though my 3rd grade French was pretty suspect. I was able to order soup and tea, with no surprises. I guess we must have looked Canadian because another couple approached us in a subway station asking us in broken, embarressd French how to find the right train, LOL. I told them we were American tourists, but I was pretty sure I could tell them which way to go.
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Sooooo, my mother is back in the hospital. She called my sister this morning (the one who lives about a mile away) to tell her that she was having terrible pain and "some bleeding." When Sister got there, she found bloody clothing all over the bathroom floor! She about fainted! The doctors thought they saw a mass in Mother's bladder, so they did a cystoscopy to take a look around. Turns out there was no mass, just a LOT of blood clots in the bladder. The left kidney & ureter checked out fine, but the right kidney was so full of blood they really couldn't see much. They put a stent in, to keep it from getting blocked. I suspect she has a small kidney stone in the right kidney which is cutting things up a bit. They have stopped Mother's blood thinner for now, but she'll have to go back on that tomorrow or Monday because she is at high risk for stroke. At this time I'm just trying to make sure that my siblings and her sister know what's going on and that we have people lined up to stay with Mother at the hospital (even though she will insist that she doesn't need anyone to stay with her--huh! NOT HAPPENING!) Hoping that I don't have to go down there this week. I have got to get caught up on some home visits that are due and I have to fit them around all my other doctor appointments.
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Hi LovesToFly! So great that you could keep working through treatments. I really looked for a way to do it, but the job is in the classroom with special-needs children, and the schedule is very rigid. Also, it's a brand new job for me (starting September), so it's tricky. Fortunately, my boss was amazing when I told her why I couldn't take the job after all - very understanding and willing to try to find a place for me after I finish treatment and regain my health. So, the job may still be a possibility down the road ... I just need to get from here to there! Thanks for good advice ... where there's a will, there's (often) a way!
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Oh, Poodles! You're having a time! Hugs!!
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I forgot I have a question: For those of you who have had a laprascopic total hysterectomy, how long were you off work? I work mainly from home via internet and I'm wondering if going back to work at 2-3 weeks is realistic. I'm a nurse, but I don't do patient care. I'm more in a supervisory role, but I do travel a good bit. That part I'm not worried about--DH can drive me to home visits.
I was realy hoping to get reconstruction started in Oct, but when I saw my PCP (whom I love and trust), she strongly urged me to go ahead with the hyst first. I'm pretty disappointed. I don't really care about the hyst--I lost an ovary & tube about 14 years ago and it wasn't too big a deal. I think I was back at work within 3 weeks and I was teaching then. But ever since I got my knitted breast forms I have wanted reconstruction. I'm so surprised because I didn't think I was that vain!
I also need a knee replacement. I saw my rheumatologist for cortisone injections to both knees and the left one is so bad, he had trouble getting the medicine in there. That means there is almost no space inside the joint--the bones are just resting on top of each other. Know wonder my left knee hurts so bad! But TKR is a very invasive surgery with a long recovery. Do I dare take off 2-3 weeks for a hyst, another 4-6 weeks for recon, then 8 weeks for the TKR, all in the same year (Oct to Oct)? I had planned to have the TKR last fall, but then stoopid breast cancer got in the way. I hate to keep putting it off--cortisone injections every 3 months is just barely keeping me comfortable and they aren't good for me. So, do I have the hyst in Oct, then the TKR around Christmas and put off recon until next Oct? I don't know if I can wait that long! Or I can go ahead with the recon in Oct, have the hyst in Dec and try to hold out for the TKR until Oct 2017. Owwww...
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Mustlovepoodes: I am so sorry to hear about your mother. I hope they find and resolve the problem quickly. You mentioned that you liked Montreal ... me too! I'm originally from Ontario, but moved here for a job 30 years ago (never planning to stay). Then I fell in love with a tall dark French-Canadian, and the rest is history. I learned to speak French (with a terrible accent!), but it gets the job done! It's a great city and I feel lucky to have set my roots here.
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Poodles, sorry about your mom. I hope she doesn't have to be inpatient long. I had vaginal assisted lap hysterectomy. If it weren't for my repairs I could have been back to work with restrictions at 4 weeks. Keep in mind that you will be shocked how tired the hysterectomy makes you. It's a lot of internal healing to do.
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Poodles, damn! I'm so sorry about your mother. I would guess her perception of a "little bleeding" and your sister's are quite different. Hope they get her straightened out soon and you don't have to go down there for her. I have no thoughts to offer on your surgery schedule. Too bad you can't combine some of them (well, maybe it's a good thing since they are all so major). I'll listen as you put out reasons for each timeline.
HUGS!
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Welcome Houston and Abracadabra.
Houston - I was feeling better a couple days setter my lumpectomy, but I over did it (yardwork) and I had some swelling. I used the wide ace bandage the doc gave me, and it felt better. My doc said to wrap it really tight, and even wrapped it at night. I wore a soft t-shirt next to my skin, then I wore the wrap. I had no problems.
Abracadabra - It's been a year for me, and I'm finally to the point where I don't think about my cancer all day. It's sho stressful. I started a meditation yoga class, and it really helps. Actually, get involved in anything that will take your mind off cancer for a while. I know Dara does photography class, and Moondust hikes. Just stay busy.
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I was in LA today to see this art exhibit called Liquid Shards. It's made of silver streamers in a net attached to buildings. Here is the YouTube version of what I saw. It's so pretty and relaxing.
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...and for less relaxing but very entertaining shows, watch Stranger Things on Netflix. It's 8 episodes of a show that combines the elements of ET, the shinning, poltergeist, and Stand by Me. It was good!
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SO happy to report that my lumpectomy went well, nodes are clear and the TVHP shrunk the tumor so that all that was left was scar tissue! No evidence of malignant cells. 🎉 I feel like a weight's been lifted! The only weird thing is that my underarm on the surgery sidefrom armpit to elbow is numb. The surgery was on Thursday so I'm thinking this might just be irritated nerves but I sure hope it goes away soon. Anybody else experience this?
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Myraknits - I'm happy for you, too! Great news! I don't have numbness, but I'm a year out and I still get tingling between my armpit and elbow, sometimes in my lower arm. I have a sleeve to wear any time I fly or do repetitive work so I don't get lymphedema flairs. The tingling was worse during chemo, but my doc said it takes many many months for the nerves to re-connect. Good luck!
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Thanks everyone for your replies. They were all helpful. So I gathered it's about 2-3 weeks and here I'm thinking about off for two months. But of course my employer works with me anyway.
Abracadabra, I always planned to visit Montreal one day and also Niagara Falls. I heard its a vibrant city, planned to go there and New York too when all this treatment is over.
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Myraknits, wonderful news! So happy for you! My last surgery was May 17 & my armpit & underarm area is still numb. I've been told that it could take over a year for feeling to come back.
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Sloan and Houston: Thanks for saying hello. Nice to meet you. As I read more and more of these discussion groups, I'm so impressed by everyone's spirit of openness.
Myraknits: So great that the lumpectomy went well! And clear nodes ... well, that is just wonderful. My lumpectomy was 10 days ago ... no numbness along the arm, but lots in the armpit and breast. My margins weren't clear, though, so back I go this week for round 2. Hopefully this will get the job done.
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Poodles, so very sorry both for your mom and your surgery schedule! I can't address the hysterectomy recovery, but I did have a TKR about 1 1/2 years ago. I know people say it's more complicated than a THR, but I've also had 3 THR and I thought the knee was actually easier. My DH said the same as he was the one to help post surgery. I know everyone is different, but I really didn't need 8 weeks after the knee. It sounds like your mom needs someone to check in on her daily. Is getting someone in like with Angels that Care a possibility? I wonder if her nursing background makes her minimize things?
Myraknits, congrats! glad the surgery is now done and you can move on to the next step.
Jill, sorry about the fatigue, but at least now you know you start moving forward again. Hope your energy returns quickly.
Sloan, that video is awesome! I'll have to look and see how long the exhibit is in LA. It is so beautiful! I agree with your suggestion about keeping busy. My first chemo is tomorrow, but I'm determined to go to a jewelry making class next Saturday. My daughter was photographing a wedding at Lake Tahoe last weekend and borrowed my camera to have a backup for wide angle shots. I needed to find a new outlet! Thanks also for the Strangers rec. I was scrolling through Netflix last night and saw it. Maybe I'll access tomorrow.
Abracadabra, know that our emotions can come in waves and run the whole gamut. We all really understand the stress of waiting! And if you're like me, maybe avoid drive through car washes! (I kind of lost it in a car wash and wound up driving down the street with 3 inches of rainbow foam flying off my hood onto the street and cars behind me. :-| )
Peggy, how was the show last night?
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Dara - Thanks for your carwash story!!!! Made me laugh out loud, because I can totally relate!!!
So after 1 day on this forum, I've already decided to change my username .... Abracadabra seemed like such an inspired choice but it is way too long. Just call me Abra!
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Abracadabra - I second Peggy's recommendation to read Dr. Susan Love's Breast Book. My best friend ( a two time BC survivor) recommended staying off of the Internet, except for reputable sites like BCO...especially until I had a post surgical pathology report. Best advice ever. Some of the crazy stuff online was feeding my worst fears and anxiety. This thread was a great resource and so full of credible information and support. Good luck with your surgery to clean up the margins.
Myraknits - Great news on your pathology report! My surgery was in early April. I have a numb area between my biopsy and SNB incisions, but other than that, no more issues or residual pain.
Houston - I was feeling pretty good about 3 days post-lumpectomy, but overdid it cleaning lawn furniture shortly after. Bad idea as it caused some swelling. Once I rested again, everything was fine. Just listen to your body and be careful not to overuse that surgical arm.
Poodles - So sorry to hear about your mom. Hoping she is on the road to recovery soon. Sending peaceful vibes your way too. Sounds like you're not getting any breaks either. No real advice on the surgeries, but hoping it becomes clear once when some of the stress you have been under dies down.
Sloan - love the video
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Myraknits, Great news on the path report. I found the SNLB site most annoying. EVERYTHING irritated those nerves that were so screwed up. How can nerves that aren't working (like when you shave) hurt when you wear a blouse with a small armhole the hits the site? Right. My BS said it can take up to a year for those nerves to reconnect and what you have after a year is what you'll keep. But I found that after about 13 months that area was back to near-normal. I can still irritate the site though.
Dara, the movie was fantastic! I saw "Gleason" a documentary about NFL player Steve Gleason and his battle with ALS. It was pretty raw (though definitely edited). I recommend it if you comes to your city. He is a Spokane native and was at the private premier Thursday.
Off to grocery shop and maybe some rain here today which we need.
HUGS!
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Abra - so sorry you have to be here, but this forum is a really great place. We've all either been there or are going through it. I will be hitting my one year anniversary next month since the wheels came off the wagon. I'm doing fine, and so will you. One of the best things I was told was to ONLY read breastcancer.org on the internet. Not saying other sites aren't good, but this one is great. Lots of bad info can be gleaned off the internet.
I love Montreal as well. My SIL is from there, and his parents still live there. It is a beautiful city.
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Hi Sue! Thanks for the good advice about the Breast Book ... I must step away from this darned computer (soon, very soon ....) Regarding the re-excision, I'll take any and all good luck you want to send this way!!
Hi brithael! It looks like my path will be similar to yours ... surgery then chemo then radiation then hormones. It's great that you're doing fine. I'm not feeling so positive right now ... so scared that the cancer might not stop at the lymph nodes. I'll just have to wait to get the tests done (PET? bone scan?) to find out where I'm at. Thanks for your words of encouragement.
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Abra, sometimes without even having any nodes involved, chemo is still necessary. That's what happened in my case. My genome tests came back that I am high risk for recurrence so they still recommend chemo. I'll still be doing rads and then hormone therapy also. Again back to the waiting which is the hardest. Just know everything you do is aimed at blowing up the damn cancer cells!
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Congrats on the neoadjuvant chemo being so effective, Myra! 11 mos. out, feeling has returned to my pit and inner upper arm, but the SNB and lx incision sites are still numb.
Abra, Houston: my post-op experience is probably atypical, but I never got fatigue after my lx, was able to climb stairs and pull clothing over my head the second day, walk 1/2 mi. w/in 3 days and drive again on day 5 post-op. I am retired from my legal career and had already drastically cut back on performing weekly or even semi-weekly by then. Nonetheless, I was easily able to drive 90 mi. each way, solo, to play a gig in Rockford 2 wks post-op (had help loading & unloading instruments & equipment). My SNB incision's seroma popped at 3 weeks, but I had it sutured and was able to drive to Iowa City for a weekend music conference at 4 weeks. As the cancer center is only 15-20 min. away, had no problems going to daily treatments. No chemo for me, though.
But don't react to your diagnosis the way I did to mine. I had one week between that abnormal annual screening mammo and the diagnostic imaging, two weeks from then until biopsy, and another two weeks till surgery. What I did was alternately panic, catastrophize…..and then attend the pity-party I threw myself. I fell off the low-carb wagon and ate and drank whatever I wanted in New Orleans and then on the road afterwards between imaging and biopsy—I even ate Krispy Kremes in PA, where I had a gig en route home. I had a big plate of linguine & clam sauce (and a piece of focaccia) the night before my biopsy. And I continued to cheat like crazy throughout my post-op recovery and radiation treatments: ordered out for pizza, and even treated myself to a slice of Hoosier Mama pie on the way home from every rads session. I exercised a bit of caution during our Mediterranean cruise in Dec., but still allowed myself more carbs & wine than were prudent. As a result, by the time I started letrozole I was already 10 lbs. heavier than before that first mammo. It's taken a lot of discipline (still occasionally broken) and exercise (harder with achy joints) to get back down to my pre-letrozole weight and (hopefully) not gain more.
Instead, go ahead and cry. Rant. Scream. Cuss. Blog. Throw stuff you can afford to break. (Just don't abuse anyone else). Treat yourself to things that won't make you gain weight, intoxicated or in financial straits.
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