Mastectomy Sept 2011
Comments
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Thats so funny! I never underestimate the healing power of comfort foods, as my spare tire can testify to. Have you received 2nd opinion path report yet? Very good you're having it done but a little unnerving waiting for the results (again). Will we ever really feel like "whew", we've put this to bed for good? Maybe we just learn to live with that little question in the back of our minds.
I did check with Dr. Khouri about what happens if the sentinel node came back positive, for example. He said he would go ahead with first round grafting anyway. I plan on telling Dr. T not to do a full AND even if sentinel comes back positive. The lumphedema posts have me really concerned. i will just have nodes radiated instead, which my RO said is a fine plan, as taking them all out does not shorten life expectancy in early stage BC. Radiated nodes is not great, and Dr. K has a challenge with radiated tissue, but yanking them all out is really scary to me.
Hope to hear good news on the 2nd path opinion soon.
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Totally agree with the sentiments here. Sarah, you summed it up exactly. I am so tired of these remaining drains as we are finally getting some nice weather and I want to get out to enjoy it but feel held back.....
Caryn, I hate that you had such a rough day. Hang in there & hopefully it will get better today...
Hugs to all .....
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rk85 - no, I contacted Dr. T's office today and the slides still haven't been sent. Uggh. Not sure what the hold up is, but I'll check back in a few days again and get more aggressive and call the path office myself if need be. They've been so good to me I'm just going to assume it takes some time to make up additional slides to send. Patience is a virtue. Yeah, keep telling myself that. ;-) And yes, I don't think I will ever stop looking over my shoulder, but I've heard the worrying gets less intense as time goes on. Let's hope so for all of our sakes! And thank you so much for the well wishes - I'll be posting as soon as I hear something!
That's very interesting about the nodes - I didn't realize you could get rads on them instead of doing a full dissection. Lymphedema definitely is concerning. I wonder if anyone has had rads after fat grafting yet? I'm sure it will happen eventually with the more immediate fat grafting surgeries they do. Will be interesting to see if the extra fat offers any additional protection to the skin.
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Hi Ladies
Thanks for all your well wishes. Surgery yesterday went great. I did have one drain that was bleeding from the drain site, but it has stopped. I did have a lot of pain last night (muscle spasms) but today they are much better. The Dr's thought every thing looked good this morning we now are just waiting for them to make afternoon rounds so they can release me and we can head home. I had my catheter removed at 8a and IV stopped at 11a. I have made 6 laps round the floor, pied and got my pain under control.0 -
GO Margie!
Sounds like you are cruising!! Here's to a quick discharge and return to your home --- God bless - you are doing so well!!
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Wow Margie - 6 laps! I'm not worthy! So glad to hear how well you are doing - yay!!!
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Margie - that's amazing progress - so so happy for you! Take care getting home and I hope you rest well tonight.
All - bad day for me. Very tired, very blue. SUCH a contrast to the last few days - don't know if I'm fighting a cold, having allergies (but on double-doses of Allegra, still as a holdover from the rash - so seems unlikely). Or maybe I just did too much yesterday. I've perked up a bit this afternoon and just made myself a VAT of buttered, salted popcorn on the stove (all by myself, like a real person!). Dunno why that sounded good, but I actually was remembering eating that after radiation, often, the first time around w/BC. Oh, and hot buttered rice/noodles w/salt was my favorite post-chemo "meal" - for those nights when you know you need something in your belly, but don't want to overload - take notes, chemo friends!
I am now going to attempt to shower/sponge myself off and hope that that too will lift me up a bit. Tomorrow's another day - trying not to read this as a trend and more of just a blip. As you all know, it's easy to get mired down in the muck some days.
Hope everyone else is plugging along!
Sarah
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Hang in there Sarah!!
Great news, Margie. Home will be so nice.
I agree about eating all the junk because we have been though so much. The strawberries were indeed delicious and beautiful. I did send a few to the school secretary because there were 2 dozen!
Had my first outing today to get some lab work done and GOT ONE DRAIN removed!! Yay. Not as bad as I had anticipated, but yes a little wierd. Just one drain left. Then we went to Target. FUn day. Now home to ice my back-the nurse said it is very common to have back ache after surgey...thought I ws alone. They relax you so much and move you around. It can really do a number on your back.
The sun is shining here now after brief showers.
jeanne
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I had an amazing New England fall day today- I had to get out and walk mare than 10 minutes (my prescribed limit) Attached the dog leash to my waist (at least I listened to some of what I am supposed to do) and off we went. Did a 3 mile loop and it was worth it! I don't know how I am supposed to do a marathon in 12 weeks.....
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Sarah,
I guess we all are going through those peaks and valleys. Hope your day got better. I was out of the house by 7:00 am today and off to the gym before going with my younger DD for 3 hour dental appointment. She chipped a front tooth on Sunday so they repaired it and did a cleaning today. While I was there I booked a pre-chemo cleaning for tomorrow. Now, you ask, why did you have to go with your 21 year old DD? Well, about a week and half ago, as she waited by a freeway on ramp, the car behind her smashed in to her and propelled her in to the car in front of her! She was shaken up but fine. The car was not and will be in the body shop for at least another 5 days. We are sharing my car but it's working out since I really don't need it much right now. Both DD and fiancé work at the Jewish Community Center, where I work out, so it hasn't been a problem. Did I mention that she also lost her phone in Disneyland last weekend? Oy!!!!
To better days for us all, caryn0 -
MargieC - Great news!! I am sure you will rest better once you get home to your own bed.
Sarah - Hang in there sweetheart!! Didn't you tell me it is ok to whine & vent a bit? Guess today is your turn. Rest well and hopefully things will be better tomorrow (why do I hear some stupid song in the background?? hee hee) If not, we will still be here for you.
Bayareamom - Wow. What a busy but fun day. Need a nap just thinking of it. Glad you mentioned the back thing as I have had intermittent back pain since surgery which comes & goes dependent on my activity level. Nice to know it is normal.
Wishing everyone a good day.
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Hello to everyone! Day 5 and felling good. My husband is concerned about the color of the drainage and can't seem to think it should not be as red as it is. It looks like tomato color and then cranberry....and then back to tomato. He thinks I am doing too much but I am honestly taking it easy. He had me call the PS and they said as long as it is not thicker, it is ok. What did everyone else experience. (Hope all are doing well and enjoying this beautiful fall weather!)
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That drainage color is normal. You don't want cloudy or any other funky color which would indicate a possible infection
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Margie-I hope you are home and resting comfortably! Glad to hear everything went so well for you.
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Margie, glad you are home! I got a much better night's sleep last night in my own bed. Did a 15-minute walk tonight in gorgeous fall sunshine.
Info on the rads vs axillary dissection: I was told either one carries about a 10-15% risk of lymphedema, and when BOTH are used, the risk goes up to about 30%. So I am not willing to do both. The RO told me that she would guarantee that I would have skin and lung effects, and could not guarantee not to damage my axillary nerve, and I felt more comfortable with the surgeon being able to actually look at the nodes and nerve and that being a little better on the risk-to-benefit ratio. However, I wonder if I had allowed them to do the radiation last year when I did NOT do the SNL, if that would have prevented the recurrence. I am not beating myself up over my decision, but do want to share that it is not an easy decision, there are risks either way. The onc nurses have all talked with me about LE and have reassured me that it is much less common now than it was in years past, that there are LE specialists who can address it much earlier and prevent most of the problems, so the main thing is paying attention to your body and doing the prevention. Again, I would not normally CHOOSE this, but with the positive node, will just be more attentive to limiting SEs and LE.
I am having those "owchie" stabbing pains that come out of nowhere, don't seem to really be related to position every time, but they disappear pretty fast. I have also read about "phantom pain" that some women experience with mastectomy, and I have to say that it sort of feels like my breasts are still there overall.... very odd, but no major extra pain.
Well, if I am incoherent it is because I am taking pain meds on regular schedule today, plan to decrease tomorrow, but not playing hero today. Have had coffee, tea, limeade, breakfast, lunch, pudding, and my mom will have supper ready in a little while. I must enjoy this while I have the chance!!!
I cannot remember whether I shared with this group (I know I have shared with SOMEONE) - my mom is an 18-year breast cancer survivor. She has been an amazing support for me, answers questions, makes suggestions gently. I am so grateful for her. And my DH has also had to go back to stressful job, and I am trying to be extra sensitive to his needs as he has been so attentive to mine. I am blessed.
Peace and rest to you all tonight.
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Hugs and prayers and positive thoughts for all my Sept sisters.
I got my port today, it hurt more than the surgery did. I know this is supposed to be a non event for most, but it really hurt me.
Thank goodness for decent pain meds
My surgeon did take off the steri strips while I was under and "The scars" feels much better...so that is a big plus.
Next step chemo class this Friday.;
Let go - let God
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Margie - It is so good to hear that your surgery went well and recovery is going so well. You remind me of the guy lapping me as I started doing laps in the hospital.
Sarah - Sorry you aren't having a good day. You've inspired me over the last few weeks. I remember really itching all over in the hospital (blaming it on low thread count sheets), but then thought that it's nothing compared to Sarah's rash so just get some benadryl and stop complaining. Wishing you a much better day tomorrow!
Jeanne - Congrats on getting the drain out!
Christine - my drainage did get lighter, but my doctor was more interested in the volume coming out than the color
Caryn - WOW, you are having more than your share of crap. I really hope tomorrow is a better day for you!
groovygirls - I got tired just reading your post. Good for you! Hearing updates like yours inspire me.
Odie - Hope those drains come out really soon!
Lorraine - I think patience is overrated. Hope they send your slides really soon. Your carrot cake sounds delicious!
As for me, I saw the doctor for the first time since leaving the hospital. So now the good, the bad, and the ugly!
Good - He removed all 3 drains! Yay! I barely even felt them coming out. It feels so much better. I wasn't sure if it was the drains or the expander across the top of my chest that was so uncomfortable. It was the drains. The doctor filled the expanders a little bit too.
Bad - I am still on restriction from driving and working from home until at least next Wednesday when I go back to the doctor.
Ugly - Well my pathology report was back from after the surgery. The diagnosis from the biopsy was 2 cm of DCIS. Now they found 1.1 cm of invasive cancer in the DCIS. So now I'm stage I. I'll have to wait to get the oncotype dx before talking to a medical oncologist. At least the 4 nodes they tested were negative. I really don't like the thought of chemo, but will do what I need to do.
Anyway, hope all of you have a great night!
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Aw, friends, you make me feel better. I now officially have a cold - probably from the three trips I made to the hospital last week - freakin' cesspool. Grrr. Sneezing takes on new meaning after a BMX, no? Have just about zero energy, so can't respond to you all personally tonight, but I'm with you all in spirit, celebrating the up's, jeering the down's and hoping for a good night for everyone tonight.
And Linda - I love pudding!
xo
Sarah
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Serenitysue--glad that your surgery is over and that it went well! Yay!
Dancetrancer, I'm glad your PS wasn't worried about the swelling in your SNB side. Although I'm not there yet (it will be two weeks since my surgery tomorrow) I can imagine that it's both liberating and somewhat terrifying to have no real restrictions on your movement. I've already overdone it myself a few times, even though I thought I was being careful enough. I'm just letting my pain by my guide (as well as common sense). Cool that your drains are out! It does feel so much better, doesn't it?
Chonikel, glad that you got your last drains out too! Sorry that you too are having more pain in your breasts. I just saw my PS today and asked him about the pain. He wasn't worried and was quite pleased with how I'm healing. Although that didn't change anything about my actual pain, I felt so relieved to know that. This is such unknown territory for all of us, although at least we have the right map thanks to all our sisters who went before us!
Sarah, thanks so much for your specificity about your experience with atypical hyperplasia. It's very helpful. I may have alread said this (Sheesh, my mind is as gone as my boobs these days-- hopefully it can return and I won't need reconstruction there too!), but I also talked with my brother (a doc) and sister-in-law (former oncology nurse who deal with breast cancer patients. They both counseled waiting and watching. So did the PS today (he co-wrote the five year study with my BS on women with NSS). As you said, I have to make my own decision. Although I'm normally a worrywart, for some reason I think I'm okay with waiting. Maybe I'm just too tired and sore to contemplate more surgery right now. Thanks so much for how generously you give of yourself on this forum, Sarah!
Odie, glad that you had such a good day out with girlfriends. That's something I'm really looking forward to. Today's trip to Santa Monica was two hours in the rain each way, but I was excited to be "out in the big world." Yes, clearly I've been cooped up too long. Glad that you're already three weeks out and feeling even better than you anticipated.
Diana, sorry that you have to make a choice of different kinds of chemo. I can only imagine how difficult that must be. But it's great that you're doing the reading and research. That way you can a decision you're comfortable with.
Linda, sorry that you had to have the ADL, but glad that it wasn't as bad as you'd expected. How wonderful to have your mother as an inspiration!
Jazz, I have that tingling and pain too--as well as the anxious thought, most often surpressed, that it might continue. I had such non-breast breasts that I'll be really ticked if I'm more aware of them after they're gone than before. Really, that just wouldn't seem fair, you know? I hope that the pain has lessened a bit for you.
Caryn, what a bummer about the clueless person on the phone! I suppose they're only doing their best, but it's so disconcerting when they don't know what surgery you've haad done. It doesn't inspire confidence. I had m bs assistant tell me that she'd spoken to "Dr. Westphal," which would be me if I'd ever gone to medical school. Gave me quite a jolt. The doctor was great, but his assistant seemed in way over her head. I got so frustrated the day before my surgery that I chewed her out, then I felt compelled to call and apologize for my outburst. It's not like me, but then none of us have ever had this done before. I just don't think people who haven't had it done truly get how terribly anxious we are about the proceedure and the subsequent healing process. I hope you're able to get in to talk to a therapist soon, someone who works with oncology patients.
Suddenly losing steam, guys, so let me wish you all a painfree, good day tomorrow!
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Morning ladies - bad night last night for me. Swelling is moving around to the sides of my body more - nothing major, but just enough to make my (normally pretty comfy Coobie) bra feel like a tourniquet. Lots of deep breathing to get myself to sleep - finally at 4 a.m. when hubs got up (he now has the cold too, and we both have a lttle stomach thing to boot - it's pure joy over here in Boston!), I had him help me pull my bra to my waist and then I went back to sleep for a couple of hours.
This a.m. I am listening to the blissful sounds of house cleaners doing hard work as I type this. I am so thankful for them - clean sheets and bathrooms being my most pressing priorities!
After they're done up there, I'm taking myself up to bed, finding a dumb movie on-demand, and hanging out there for the better part of the day. Going to venture into school later to get my daughter . . . will be my first trip up there in almost 3 weeks - she has an after-school party w/last year's teacher so we will be able to drive up close to school (we are otherwise a "walking school" w/no auto access - 4 blocks away, but up a bit of a hill and I haven't been up for it yet). Funny how I cannot wait for little things like this.
Today's my last full day/night with my MIL here to take care of me/things. Next week I'll be flying solo again and I will admit I'm nerved up about it. Part of me wants to regain some control of my house (although she has been unbelievably supportive and helpful - I am SO lucky to have such a great MIL), but part of me is worried about getting on on our own. More pressure for my husband who seems like he might implode at any moment. Ah well - we are lucky - one awesome 8-year-old daughter is relatively easy, right? And it's a new week - hopefully this cold will be history and I'll be stronger yet.
Babbling here - hope you guys are hanging in - will check in later. Take care today.
Sarah
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Hey Sarah - so sorry you had a bad night and having a cold/stomach thing on top of this would indeed be miserable! I don't tolerate wearing a bra for very long either - but I've always wanted to burn my bra so that's nothing new, LOL. The feeling is just stronger now! I don't wear one unless company is coming over or if I happen to go out. Happy for you that you get to go out this afternoon! It sure is lonely and boring being cooped up in the house all day. What things are you most worried about taking care of next week? Are you still having meals brought in?
Overall I'm continuing to improve steadily. My legs are becoming less sore (from the lipo) and that hypersensitivity across the chest is not quite as noticeable. I slept through the night last night without awakening by that sharp muscle pain in my R lower ribs (although I did wake up several times, that's my "normal" - not a great sleeper). And for the first time this morning I can say I didn't feel marked chest/pec tightness - it's still there, but not nearly to the same degree. And I'm back to walking 20 minutes with some gentle exercises post without significant swelling under my arm. Progress!
Today I am going to try driving my car around our little development (essentially no traffic here) and see how it feels. I'm very anxious to get my driving independence back. Wish me luck!
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Ooooh, Dancetrancer - driving! That's on tap for me this weekend - I think it'll move me forward toward feeing more myself again. I love my car and I love the freedom. Next week, I have a waxing appt. (I am a hairy part-Lebanese woman!) in the center of town - about a 5 minute drive, tops, 10 min. trip w/parking. That's Thurs. and my goal is to get in there and park by myself. My greatest fear there is that I have to lie down to get my brows/lip/sideburns done and lying down, as we know, is just not fun. I'm sure I'll have to sleep after I go, but I'm pretty determined to do that. Good luck w/driving today - and I'm so glad your pain's better, and your mobility is increasing w/o swelling consequences.
What am I worried about? Still have dinners coming, so that is off the table - although bringing the stuff in from outside if someone leaves it on our patio is an issue - my daughter can help me w/that I guess. Mostly I worry about having the energy for child care - homework battles, logistics since I'm not driving carpools right now, etc. I have a girl, who's well-behaved, generally and just a joy, but she is a HIGH ENERGY person (we are actually two peas in a pod, although we adopted her at 10 mos. old - cancer Round I messed w/my fertility but she is one of the best things that ever happened to us!). So she is getting restless w/mama on the mend. Just this a.m. she said "it's really not that much fun here lately." Part of me feels badly, part laughed in my head b/c this kid's been out every day this week, so far, either playing w/a friend or at a b-day party. It's no fun b/c she's coming home at 5 and having to sit for an hour of homework!
Anyway. I just need to suck it up and do it, and if things fall thru the cracks, they fall. Not having a tight grip on stuff is my bugaboo. This will be one of the lessons of Cancer Round II - letting it go. I need a 12-step program just in how not to tidy my house w/i an inch of its life - the clutter here, while by a normal person's standpoint is minimal, has been freaking me out.
DT, let us know how the driving went!
Sarah
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Hi all. Thank you for your good thoughts. We finally got out of the hospital at 530p which meant we had to deal with rush hour. My biggest issue are the muscle spasm they are killer but the don't last too long. I see the PS this afternoon so I am going to ask for muscle relaxer.
Sarah I hope the cold gets ether.0 -
Hey Sarah I think your car trip for the waxing next week is a great goal! I figured you were probably most worried about child care issues - with me not having any children, I couldn't begin to guess at exactly what that entails, LOL! It looks like just detailing it out was helpful for you - so you can make it more concrete and have a plan, including letting the extra "stuff" go! Not so easy to do for those of us who are perfectionists/control freaks (speaking for myself), but oh the lessons we learn from this diagnosis.
How funny that your daughter said it isn't much fun lately...LOL...I used to complain constantly to my mother "I'm bored!" Gosh, how annoying I must have been, given that she was swamped with caring for 6 kids, LOL!
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Hey Ladies - The ups and downs continue.
I am back in my recliner - even without drains - my bed is not my friend yet. I called the Physical Therapist today to get an eval. I only have 3 weeks of disability left and I want to make sure I am doing the right thing to get my strength back.
I am walking in the morning with the dog and although i get winded and I am holding my arms close to my sides - it's not too uncomfortable. I have driven into town where my biggest challenge is driving the BEAST - our ford F150 from the 90s which doesn't have a door handle on the drivers side -
so I twist myself in a pretzel to try to pop it from the outside - using my RIGHT hand since my left arm still doesn't like to go that way.
Sarah - I had to let the crap go the minute I married a slob
Margie - Glad you are home - and I hope you get that muscle relaxer - the spasms do get better with time....
Hope - Yay No Drains - Hang in there - your sisters are here to support you!
Tappy - Sorry about the Port pain - but it's done and you did it! You are so strong!
I am sorry I can't keep up with everyone - but I follow every day and am praying and sending healing thoughts for all the girls here!
Don't know what I would do without you!
Tina0 -
Good morning all!
Welcome back Serenity Sue - may you continue healing quickly.
Sarah - I am so sorry you had a rough night and hope you can enjoy some downtime prior to the quick outing to the school today, If you find the 12 step program, please count me in. I would just die to have my mother in law see my house right now and won't have the cleaners come in since it is a wreck (funny eh? Not enough therapy for that, ha ha) As DT said, I am glad you are able to mentally prepare yourself for next week as it isn't quite so scary once defined. As for the DD being bored, maybe teach her some card game or play boardgames? Just thinking out loud. Heck in our house, you didn't complain you were bored as my mama would find stuff for us to do, haha....I hope your cold/stomach bug is only a 24 hr bug and gets gone soon.
DanceTrancer - Way to go!! Walking and taking a short drive....Amazing how wonderful the little freedoms or trips outside the usual 4 walls excite us but I too have started to get ansy and love the little outings. Will feel like a new woman once these drains are out.
MargieC - Glad you are home and hope you can now spend some downtime resting comfortably.
Currently my only issues are minor. I can feel the entire outline of my TE's and am certain they are made out of the same hard plastic as milk jugs....(not comfy) and some swelling in the pecks area in the evenings. Again, minor so all is going well in my world.
Hope everyone has a great day; gentle hugs to all.
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Tina - glad you got an appt with the PT - they should really help guide your recovery along. I'm impressed you are driving that big ole truck. Hubby had one of those when we first met in 1991...it had a big old crack across the windshield and the stuffing was coming out of the seats in places. He said he knew I was a keeper when I didn't run away screaming when he picked me up in it for our first date! My oh my how he loved that truck, LOL! I, on the other hand, didn't shed a tear when we sold it. Hubby still talks fondly about it, though, LOL!
Lorraine
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Lorraine - I will have to send you a pic for you to show hubby....
This thing is BEAT!!! We are on the market for a replacement - but we paid $1000 for it two years ago - and have worked it like the BEAST that it is.... it doesn't really owe us a thing.
I do feel like I should wear work boots when I drive it though....
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LOL Tina!
Well all, I did it! I drove my car, and not one person or thing was injured or maimed! Independence Day!!!!!!!!!!!!!!!!
I am seeing the light at the end of the tunnel! 0 -
Hi Ladies.
Glad to hear of all the progress you're making. For those of you who are having a difficult day, senidng you love and support. Margie, glad you're home from surgery! Sarah, hope your day is better. Walking, driving, eating--hey, we're starting to sound like normal folks again. I've been doing more than my share of eating since the surgery, which isn't my norm. Every friend who has brought over dinner has graciously included brownies or red velvet cupcakes or carrot cake cupcakes or chocolate. Yikes. I can avoid it if it's not in the house, but once is it, I've discovered I have no will power. I tell myself and my growing middle that this is healing (yeah, right) because it's made with love. Saw my ps yesterday who was very happy with how I'm healing. For the first time since I had surgery two weeks ago, I feel like myself. I can even imagine getting past this. Have a great day everyone and keep going, keep healing, and stay strong! You are all an inspiration to me.
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