January 2014 Surgery Sisters
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I had a bilateral mastectomy with reconstruction 2 1/2 weeks ago. Also had sentinel node at same time- more pain with under left arm where node was taken. Is this normal? Clothes feel like sandpaper. Anyone else have trouble?
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BigDBeatingBigC...thanks, yes, bad days and good days is right, but one thing that keeps me in perspective is seeing some of the discussion categories, for instance, "terminal". So when I have a bad day I will try to think about that. Hugs to you also!
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welcome 2boysmom,
sounds totally normal to me.
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2boysmom - oh, yeah, that sounds soooo familiar! In fact it took me awhile to feel anything at all because my affected arm and armpit area was totally numb for several weeks. Sounds like you have more feeling to begin with. I had 17 nodes removed. Some feeling is coming back, thank goodness. The sandpaper feeling was all over my chest, but that's getting better, too.
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I had my first good night of sleep last night, thanks to Xanax, and I slept on my side... think that did the trick.
My last drain was removed today, so a full shower tomorrow, yeah! I drove myself to the PS's office, then stopped at Target to buy a few non underwire comfy bras, only found two, better than the tight sports bras I've been wearing. I think I overdid it, because I am exhausted and in pain. I should have asked someone to drive me, but thought I'd be ok.
I see the PS in three weeks, not sure when they'll start filling. Seeing myself in the mirror without the drain and derma skin was a bit of a shock. The scar is rather ugly, but I know I did the right thing opting for the MX instead of another LX.
If you work, how much time did you take off? I figured one month, but a friend of mine, who had BC, went back too soon and regretted it.
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So glad to be reading the good news here! Yay for no chemo and yay for big boobs and yay for sleep, if you got it. I am joining the non-sleepers I am afraid. I took two Hydrocodone last night just hoping it would knock me out and I did not sleep a wink. Work was hard today, let me tell you. And no word on the bone scan yet. I do not know if no news is good news or what to think. Only been one day but just confusing as to why I am having pains. I have two cats as well and no family anywhere near, and they know when you are feeling down. If I did not have them to come home to, would be awfully lonely. Hugs to you all.
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Thanks for the reminder, momaton. I'll put the tiara on ...oops I don't have one, so I'm going to crochet myself one. And I'll only move if I want to
Today I got hungry for real food, though, and made some lasagna. Turned out really good 
Claire - I have Xanax but never thought to try it at bedtime. I'll do that tonight. Ooooo, side sleeping. So jealous! Be careful out there....hope next time you can ask a friend to drive you. I found the hardest part is shutting the car door.
BigD - sending you hugs. It must be so hard to be alone through all this, but cats are like family
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bc101, X has so many uses. I hope it helps you sleep. Good luck!
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(((hugs)))
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2-boys-mom: Totally normal. When they remove lymph nodes it makes for a much more extensive surgery, so more pain on that side. The sandpaper feeling is your nerves being raw after surgery (or so my surgeon told me). The nurse recommended using lotion and gently massaging the area that feels like that to help regenerate the nerves. It's VERY uncomfortable at first, even with a lot of lotion, but it got better quickly after we started doing that.
Claire - the best nights of sleep I get these days are when I take Xanax. Benadryl gives me restless legs so I can't take that (or Tylenol PM because it has that in it), and Ambien has an interaction with another med I take. Does anyone take melatonin to help them sleep? I only work part-time but I took about 3 weeks off. I have a desk job and was pretty uncomfortable after my first couple of days of sitting at the desk, reaching across to type, opening filing drawers, etc. But after that it got better.
BigD - Isn't is so frustrating when all you want to do is sleep and you even take something to make you sleep and that doesn't even work??? I would call your doctor tomorrow. Nothing is as urgent to them as it is to you, even if you have a wonderfully caring doctor! At least call and ask when they should have the results. I had my bone scan results within a couple of days I think. Saying prayers yours is clear and the pain is from something simple!
I emailed my therapist today to ask if there was anything I can do for the cording and tightness under my arm. I'm already doing the stretches she told me to do and it's not helping at all. She said to hold off on the stretches until I see her Thursday and we'll go over everything. The one thing I'd LOVE to do is put some heat on it.... I think that would feel so good. But she said absolutely not. Hmph.
Sending good sleep vibes out to my January sisters. {{hugs}}
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Surgery for DMX on Monday. Have surgical bra, chapstick, pillow for car, hygiene wipes in case. Anything else i need?
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Lindacam-wishing you the best and quick healing-will be thinking of you on Monday! I would really recommend starting stool softners-I used them but still had quite a time after the narcotics. I did get a wedge pillow for bed-needed the elevation and support, recliner works also but I really wanted to sleep in bed. I went thru all the lists and laughed when I read so many suggested backscratcher-I am no longer laughing-could have really used one! Please don't overdue! This is a huge surgery! Take time to rest, eat lots of protein to help rebuild tissues, and use your meds. Let others do for you! Char
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Lindacam...I was too stoned on meds in the hospital to need anything. Don't think I brushed my teeth or combed my hair...lol. My family did bring me a nice blanket and warm socks.
Hugs and good thoughts for Monday!
Laurie
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Linda - I'd recommend to start eating lots of fresh fruits and veggies, and start juicing or something to get the bowels cleaned out. Either way, be prepared for constipation. It was the THE #1 problem for me and the side effect that Dr's don't like to advertise. The pain meds and the anesthesia cause constipation and for some women it can be very serious. Ask your doctor for a regime to follow if you need it and then get your laxatives and suppositories lined up.
Good luck! We'll be thinking of you!
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Michelle - I just checked out your blog and I love your writing! I'm a writer at heart and have often wondered if I should start a blog. Problem is, I'm a very private person and it's very scary to be so open to the whole wide world about my private struggles. I do have a CaringBridge site, which when I started it had no idea how much I'd need it as the saga continues. I don't post much on Facebook, but try to keep close friends informed there, too, since everyone is so hooked on that site. As far as the CaringBridge site, it's a great tool, but I'm afraid that my friends who've not been through breast cancer are getting tired of my journaling and just want to hear I'm okay, The End....but no, in reality, there are many chapters and then several series after that, so it's very therapeutic to journal. In fact I think there have been studies proving this:) BTW, if anyone wants to private message me for an invite to my CaringBridge site, I'd be glad to send one.
We are the January Surgery Sisters!!!
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Linda...I can not agree more with bc101. Constipation was the most serious issue I dealt with post surgery. Not sure it can be avoided....but do anything you can to not let it get out of control!
Laurie
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Linda good luck! I totally agree to constipation was the worst! I took colace and drank prune juice and that seemed to help. Take it easy-let others do for you! I am almost 3 weeks since surgery and feel pretty good! Best of luck! Be strong!
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I take generic Zoloft to help with the hot flashes so I can sleep, and take zzzquil and melatonin at night before bed. Have been taking the zoloft around noon and am experimenting with taking it earlier. It gives me bad dreams.
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Momaton - I loved the story of you and your DH. My grandma, after being widowed twice, met and married the love of her life at 60, and had 17 fantastic years with him, so I know it's never too late to find happiness if you are open to it.
BigD - My little sister used to call me that, LOL. I'm alone every day too so I know how it is. I do have a very good friend in Colorado who calls me daily which helps, but some days, just reading the posts of my January Sisters here is the best medicine.
BC101 - I'm with you. I have a CaringBridge site, and feel like most of my friends and family are disappointed if I'm not posting that I'm doing great. This is a marathon...not a sprint, especially for you sisters with chemo and radiation in your future. We're going to have bad days with the good.
Linda - Good luck Monday! You will do fine. I had major issues with constipation too. Heed the warnings and most importantly, MAKE the doctors do something if it gets bad.
Wow...crazy night last night. By the end of the day my right pectoral muscle was spasming and I was in a lot of pain, but also exhausted. I considered taking some Percocet, but thought I didn't want to add nausea to the list, so stuck with Aleve and added 2 Benedryl. Although I woke up 2 hrs later in pain, after walking around for a few minutes, went back to sleep for 5 hrs., then got up again, and back to sleep until 9:30 a.m.! Really weird dreams...thinking I had a hematoma on both sides now...so real that I had to look when I woke up. LOL...everything is fine. I'm back to the usual burning and occasional zingers, which I can deal with.
Happy Wednesday everyone!
Diane.
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Is it safe to start massaging? My UMX with TE placement was just two weeks ago. I bought bio oil, which I heard can help reduce the risk of capsulation.
Claire
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bc101 - Thank you for checking out my blog! I find writing very therapeutic and mostly do it for myself. Most people who read it (and there are maybe five of them...LOL) probably don't want to hear about every little thing I complain about, but like you said....we can't just say "I'm okay" and go from there. I'm a very private person, too, but for some reason putting my BC journey out there for the world to see doesn't really bother me. Maybe if I had thousands of followers or something. LOL
aviva - I almost bought some melatonin today to help me sleep, but I balked at taking ONE MORE PILL. <sigh> How much do you take?
Diane - Sorry about your disrupted night of sleep. I've been having crazy dreams lately, too. I was up until 2am again last night. Just can't fall asleep and it drives me crazy!
Linda - Welcome to our little group. I'm sorry you have to be here, though. I'll be thinking of you on Monday.
I had a busy day and I'm exhausted!!! I was off, but had a bunch of errands to run and then had a softball meeting tonight. I'm finally home on the couch watching the Olympics. I feel like I was gone all day but got nothing accomplished. <sigh> Tomorrow I go back to Dallas for another PS appointment (and hopefully another TE fill) and then to see the lymphedema specialist again. Productive appointments but I dread the 3 hour drive.
Before my appointments I'm going to visit a friend of mine who is Stage IV ovarian cancer. I'm looking forward to it but not. I've known her ever since our boys were babies (they're 12 now) and she was one of my first "mommy" friends. She's been battling this monster for 6 years and is now in hospice care.
Going to be a sad visit.0 -
Michelle : I'll be thinking of you tomorrow when you visit your dear friend; she's lucky to have your friendship .
Anyone else on an emotional roller coaster? I am currently off work and am having a hard time staying positive. I think I had more distractions when I was working. Now, all I can do is think of "C". To make matters worse, I had an infusion today (have to take Herceptin for a year and it's not available in pill form..I'm tethered to the chemo center!!!!!!) and found it very hard to sit there. It's depressing and makes me feel like I am making absolutely no progress not to mention that my MO (although very smart and I trust her ) has the communication skills of a fly. I wish she were more encouraging, positive...my cheerleader in this mess. I think I'm asking too much. Anyone else have a lack luster MO? Hope my BC sisters sleep better tonight.
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{{Hugs}} Girlstrong
I am not crazy about my MO. I think he's very knowledgeable, although kind of old school, but I have a much better relationship with my BS and PS. As for the cancer center - I HATE going to mine. That's where my MO and RO are. I honestly have never seen anyone there under the age of 60. It's me (I'm 41) and a bunch of old, bald, feeble sick people. So depressing!
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Michelle - I have a 3 hour drive to my clinic, too. Not fun in the middle of a Minnesota winter. You could die of exposure out there! I'm so glad it's finally warming up to the 30s
))I used to take Melatonin (before bc) and it worked for me. I may go back to using it because I am weaning myself off all medication now - well except for my Aromasin, of course. I can't remember what the dosages are, but I just took one per night. So sorry to hear about your friend. Is she at home? When my father was dying we enjoyed many moments together at home. Just being there seemed enough - not so much what we said. And he was never alone - up to the minute he died. Good luck tomorrow.
Claire - I'd like to know the answer to the massage question - also how to prevent capsular contraction - but I think that's something only the PS can answer.
Pleasant dreams and sleep well my friends!
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girlstrong - I was suffering from extreme anxiety from the time of my surgery until just a few weeks ago when I finally calmed down. Now I'm going through the depression stage. I'm seeing a psychologist and I always be sure to schedule that appt. along with my fills and PT. The psych folks there specialize in cancer patients. I'm hoping to get an RX for an antidepressant that will work for me. I'm off work too, and that doesn't help. I'm trying to build more structure in my day, but it's hard.
All of my Dr's, RN's and PA's are young - and all are women except for my PS. They are all very competent and compassionate. I like every one of them...well with the exception of one. I don't think my PS and I hit it off too well on our first visit. That's okay. He's supposed to be very good at what he does, so I guess that's all that matters. I go to the Mayo clinic and I love it there! It's such a wonderful environment. I actually look forward to my appointments. Of course it's different for me because I don't have to do chemo or radiation, so it's pretty easy. Please don't hate me!
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Hi everybody. I haven't been on here for a while and then I got several days behind in reading everybody's posts. I am finally caught up. What is the deal with the sleeplessness. It is horrible and I just drag all day. My regular doctor prescribed me Sonata. It has been a life saver for me. It doesn't leave you with that druggy feeling the next day.
I am glad to hear that other people aren't so crazy about their oncologist. Mine has no bedside manner at all. He always gives me the worst case scenario and I leave there thinking that I will just be a science experiment until I die, which he makes sound like it could be tomorrow. Then I see my surgeon or PS and they tell me the real story. I just hate that roller coaster.
I had a strange sensation the other day. We had finished dinner and my husband was doing dishes and I was cleaning the counter tops off. My TE is under the muscle so when I would move my arm I could feel the muscle moving and it reminded me of the men body builders that flex their pecks. It was strange.
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Well I did get a good night's sleep last night. I was so very tired when I got home, still in some pain and I took one Hydrocodone, watched Olympics, then took an Ambien around 9:15 and within 15 mins, knew I had to go to bed and miss the rest of the broadcast. Thanks, Michelle, I have not heard anything yet and may call tomorrow to see if anything really showed up on that bone scan.
I want to let you all know that there is a product I have used in the past and plan on taking it again, all natural, and at least for me, it really helped me get to sleep once upon a time. I take a lot of this man's supplements and they are costly, so sometimes I have to give up on one to afford another, and the Night product is one of those I gave up a long time ago in order to be able to buy other supplements I thought would be more beneficial to me, but I do plan on getting this again. If you click on the link you will see an 11 minute video that you can watch, if you are so interested.
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Lindacam...as everyone else has said, start your stool softeners. That was a huge problem. Good luck on your surgery Monday, prayers to you.
I went today for my first expansion and was unable to get it. My PS was unable to locate my metal port in my expander because I am still swollen. Scheduled now for next week to get an ultrasound and have ports located that way. I was very depressed when I left, #1 because I was so sore from being poked with needles and #2 because I often feel like this will go on forever. He said I may need ultrasound for the first several expansions. Then went to visit 4 grandchildren and things got better after kisses from my youngest granddaughter who is almost 6 mos. Thank God for them!
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Lighthouselady-There are quite a few of us "grey haired" patients out there-yes the surgery, radiation and chemo is harder for us to recover from but we work hard to recover too and love to live. This BC is a bitch for all of us-young or old! Live in a retirement community (55+) and there are very few couch potatoes here, sidewalks and gyms are crowded all hours of the day. Char - 67 and still going strong.
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Hope - I'm sooo sorry! That sounds just awful. I'm so glad that your grandchildren were able to cheer you up. Hang in there. I know it's tough when you head in thinking things will go one way...and they go sideways, but know that you will get there.
I'm sad to think about all of you sisters with MO's that are unfeeling and leaving you feeling depressed. Every one of you deserve an MO who will ease the journey.
I had a much better day. Took my son to taekwondo class and saw a lot of my fellow students, who were all glad to see me. It was nice to see actual people.
All of them want me to come back. I'm hoping that there aren't any more setbacks to getting that first fill a week from tomorrow. So far no signs of infection from the roto-rooter of the hematoma on my foob. Thinking positive thoughts, but know all I can do is keep my head up and move forward.Hope everyone gets some sleep tonight!!
Diane.
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