June 2010 Mastectomy

Laurie: that is so cute that your son goes and takes naps with you!  That is just adorable!

4LuvofZ: to me that sounds love of zzzz's, which makes me tired (!!!!!), but to answer your question about heat, I asked a wonderful nurse my first night at Yale about using ice to reduce swelling and she explained to me definitely not to use ice but that heat for comfort should be ok.  Just thought I would pass that on.

Somanyblessings: I had 2 of 18 nodes and I, too, have to have chemo.   Chemo is very refined and for people like us with only a few nodes, I am not confident we are potentially going to be getting sick as perhaps the strength they might use with us could be not too strong.  I don't know and I am sure I am going to have to have scans as well but every day we are getting closer and closer to being healthy again.  If you work hopefully chemo won't affect you too much and you can get back soon.  No one ever told me letting something get me down was going to make it better so don't let it get you down as it won't help matters.  You will be ok...we are all just trying to work through things day by day.  I know it is hard but remember with every passing day you are getting closer to putting this behind you....YEAH!!!!!!

Liz 

Thanks LizzyMack1. That's good to know a nurse thinks heat for comfort is okay. Didn't mean to make you tired ... It's actually for love of myself (Z) - a new idea for me - if that makes it any better

SoManyBlessings - That sounds like an awful lot to handle!! I think all any of us can do is take one day at a time. Know that you are not alone. I will keep you in my prayers. 

I'm going to be calling my PS today too to ask about this underarm puffiness (dare I call it swelling?). They kept telling me last week that it's "normal" but it's driving me nuts! I feel as if my arm is sticking off like a sumo wrestler!

Happy Monday everybody!

Energy Level: I am amazed at what many of you are doing - 4LuvofZ, I had my surgery the day b4 you and I can't imagine going to a museum right now. In fact the only place I've been is to my doctor. Today is 2 weeks post surgery so this week my goal is to try to get out on some short trips, and to start driving. My energy level is very low. My PS said the body uses a lot of energy/calories to heal, and in fact stated "this is not the time to diet". Having said that my stomach has been bloated since surgery, my pants are all tight, and I do feel like I've gained weight which is a bummer. I am not getting on the scale, just trying to eat healthy food & I hope to start walking more this week. I had slowed down activity to get the fluids down so I could get those drains out (and it worked!)

Lizzymack -I agree w/everyone else that you should call your doc's office & see if someone can get those drains out for you.

4luvofz: I still find I need my pain meds, also vicodan - my BS suggested I cut pills in 1/2 and that helped. I am not feeling so fuzzy. I take first thing in the morning when I get up, and then go until late afternoon usually, but from then on it is downhill. I see you live in Tampa - I am in Bradenton, close by, but had my surgery in Tampa, my BS/PS are Cox/Soler. Did you go to Moffitt?

somanyblessings: I am so terribly sorry to hear all that you have been through. This is a good place to come with your feelings, you don't need to be strong here - we are here to help hold you up. What other support do you have? Are any of your adult kids near by? I have said before, I can't imagine going through this as a single person, much less with young children to take care of. What brings you joy? Whatever that is I hope you can find a small glimmer of it each day. One thing this cancer is teaching me is to take it one day at a time, a cliche but in this situation its the best we can do sometimes. I'm holding you in my thoughts today.

I to have the underarm poof, have asked several times about it and was told it is completely normal. It seems to get better from week to week. The holes were the drains were pulled are almost scabbed over, that may play a part in the poof. Our bodies are trying to heal is my guess. I did mention to my PS that the left side was more poofy than the right, the side with more nodes removed, as she agreed that could be playing a part in it as well.

A word of caution on the heating pad - be careful when using so as not to burn the skin. There was a person on another thread who used a heating pad after surgery and ended up burning herself. The nerve endings are gone for the most part, and the skin is more sensitive if that makes sense. I can't remember which thread it was on, but I made a mental note not to use a heating pad after surgery. It is also not a good idea to use one if lymph nodes were removed on the effected side as that could trigger lymphedema. That is mentioned on the preventing lymphedema site.  

On the exercise front - still walking on my treadmill without swinging my arms, and it appears that all the surgery bloat is finally gone! I tend to weigh myself everyday to keep an eye on what is going on. Plus, since I am getting Herceptin every 3 weeks, they don't like it when you gain (or lose) weight as it messes with the dose I guess. Of course they weigh me with all my clothes on and shoes, my shoes weight like 2 lb's at least. 

Just got off the phone with my PS office.

I can't get a referral to see a physical therapist without having symptoms of lymphedema. But, they did recommend that I get sleeves and gloves or gauntlets if I did any flying. Since DH is planning a trip in Sept to my favorite place, we will be flying. So, if my insurance checks out ok, I think it will, I will be getting fitted for sleeves this weekend for both arms. I asked about the right arm with only 1 node gone, and they said yes, it definitely needs to be protected. I just wanted to pass on this information as I know each PS is different. This is just what mine recommended.

Another hot and muggy day in St. Louis, glad I have ac! 

Liz I am glad you 're ok- talk about freaky!  On the bright side, now you don't have to wait to get the drains out .

So many blessings- So glad you found us, I hope you allow us to be there to support you.  You have found a strong group of women to help you through this.  I hope you had a better day today.

luv of z's- Welcome to our group!  Never apologize for being long winded- we are all a bit long winded at times, including myself and I enjoy every long post by every person.  I am glad you feel comfortable enough to put your voice out there amongst us!  

Robin- not to be rude, but what the hell?  I can not believe that you are being put through so much just have a necessary surgery for a disease- come on!  If I were you I would be shaking I would be so mad!  Keep us posted on what you decide and how this progresses.  Keep up the good attitude, you are doing amazing.

I am very happy to say that the nurse took my drains out first thing this morning.  YAY!!  I am free!  They both had small clogs in the lines internally so when they pulled them we had a bit of a mess but I didn't care to be honest.  I haven't had any additional problems  with drainage since then.  I saw my scars today with out steri strips for the first time today and was super impressed.  My scars were just two white lines, I was expecting more of a gory mess on some level, or something purple and angry.  But it looked old?  Weird?  I commented on it and the nurse said, yes, you have a very good Dr and you are healing exceptionally well.  (she doesn't have much of a personality.)  Also, the nurse did not have the "authority" to give me shower privileges- so I sit here one more day dreaming of a shower....I see the PS in the morning.  I did ask about the armpit puffiness and was told it's normal- just like the rest of you.

I hope everyone had a great day!!!  

Wow LizzieMack, that would have totally freaked me out! Glad it worked out okay in the end. It is some ride, it isn't it??

jblcsw10 - You are close by; love your beaches! I went to UCH; my BS and PS are Cox/Albear. I think my Cox is your BS' younger brother  I tried the half-Vicodin thing but it still made me fuzzy. got the Darvocet today and - I've only taken one - but so far so good. Seems to work better for me than the Vicodin.

almagetty - The Tamoxifen decision is a tough one for sure. I don't have a history of cancer (of any kind) in my family  - my BC stunned us all! - so I really didn't like that Tamoxifen increases risk of other cancers especially since it doesn't guarantee that it won't occur in my other breast. Hopefully I made the right call!

I think I stretched/strained the incision where my drain was last night. Woke up in the middle of the night b/c of a sharp pain as I was changing positions. It looks a bit raw and was definitely tender today but the PS says it should be fine. BTW, I was told not to use Neosporin or similar ointments on it as that can slow the healing.

Thanks, all, for the warm welcome and advice on the heat, pain, underarm puffiness, etc. Unfortunately I guess we just have to live with the latter since we're all being told the same thing. (Oh the things we've come to accept as "normal" !)

One more day down and I think I won!

lizzymack1 When I read that, I almost passed out...  Were your drains not stitched on? (( I am sure hoping not ))  Mine are and that is what is so ouchy all the time. So glad things worked out ok. 

Glad to hear of everyones puffy underpits. BS and PS assured me also this is normal and will be better eventually.   Also pain in my cleveage area which was not there last week, or else the other discomfort took priority over it. Seems like something new every day

I haven't had Internet service since Friday afternoon, so it was a long boring weekend.  Just got service back this afternoon and am playing catch up with yall. 

One drain out and the PS said he will remove the other this Friday.  Because of the dying skin, I am not sure if I will get my first fill or not.  jblcsw10 Did that interfer with you getting fills?   I will ask for more details Friday.  I am still sleeping in the recliner and its getting old, but I am more comfortable there than in bed.  Hope everyone sleeps good tonight.. Hugs !!

Liz: Geez! How scary for you!!! Perhaps we shouldn't have all wished quite so hard that your drains would come out soon. We certainly didn't mean for them to pop out on their own! :0 I'm glad that it all worked out and hat you're down to one drain.

Laurie:  Yay for nice, quiet white scars! I'm certain the PS will give you the okay to shower today.

Jeanne: I hope your swelling is down today. My PS cleared me to sleep braless after my first post-op appointment 7 days after surgery. At first, I slept with a stretchy-type cami under my pj's, but have been sleeping completely braless for at least a couple of weeks now. I haven't had any problems with swelling. Tomorrow I'll be six weeks post-op. I'll keep my fingers crossed that you don't have to go back to the bandages.

4LuvofZ: I think you won, too! Interesting about the Neosporin. I hadn't heard that. I did use it on my drain incision. Maybe I shouldn't have ... oops! Oh, well. All's well that ends well. The Tamoxifen call is horribly difficult. I hate it when there are gray areas, and this whole BC ride has been filled with gray areas!

I went to another oncologist yesterday for a second opinion about Tamoxifen. I absolutely loved him! He took so much time to explain everything point by point. Plus, the man is really, really good looking, which didn't hurt at all. (My first opinion onc explained a lot, too. But, since I saw her three weeks ago I've done extensive research and had so many more questions.) Anyway, bottom line for me, both doctors give me a lifetime chance of developing BC in my remaining breast of between 20%-25%. Both agree that Tamoxifen will cut that in half. The oncologist yesterday told me that with or without Tamoxifen, my survival chance remains exactly the same since I am being monitored so closely. Anything that crops up will be caught early. The advantage would be that with the Tamoxifen my chances of having to deal with things like further surgery, rads and chemo (basically with anything BC) would be reduced by half. He confirmed what my first onc said, that my chances of developing a uterine cancer from this are basically non-existent because of my age. The uterine cancer chance, although extremely slight in any case, only affects women in their 60's, 70's and older. The blood clot complication, which terrifies me, happens in 1 in about 10,000. His recommendation for me is to wait until my reconstruction is finished (October'ish counting the nipple re-do) and then to try the Tamoxifen out. He said to evaluate it a few months at a time. He estimates that 80%-85% of the women that he has given it to in my age group have no major issues with the hot flashes, etc. If that is the case with me, I continue on with the dosage. If not, I can then choose to stop taking it forever or to stop taking it until after menopause, with the understanding that stopping it will up my chances for new BC. He said over and over that my starting on Tamoxifen is not an emergency "do it right now" situation, nor is it a matter of life and death. It is not a treatment for cancer because all my cancer is gone. It is strictly a preventative measure. He also told me that if ever I chose to have a prophylactic Mx on my remaining breast, there would be no reason to take the Tamoxifen. I told him that at the first sign of anything wonky on a mammogram or MRI, that is precisely what I would do. I think I will follow his advice. I go back to my first onc next week to tell her that that is my plan. I will stay with her as my oncologist, but the doctor from yesterday told me he'll be available to me if ever I want another opinion on anything to do with treatment. It's nice to have two good doctor's brains to pick.

So, that's where I sit today ... happy healing, everyone!

Getty 

P.S. Liz you have got me watching HGTV now! I am hooked. I am imagining all the great things I will do to my house when I am able.....

You all are going to think I am crazy but this will simply corroborate what you already suspected! All my life I had big fat sacks everyone calls breasts. I hated wearing a tight shirt b/c it would look like I was arbitrarily trying to attract attention...the arbitrary my part, the attention their's! When I ran with my friend who also had large breasts, we would have to tape them down AND wear a sports bra just to have a comfortable run. So yesterday, before I had to rush off to the PS, I put on a tank top which fit but it wasn't humongous and all I could think was, and I promise you all I have not forgotten for one minute bc has gotten me here, but I am going to like my new, smaller, more athletic, less attention-gathering breasts!!! It was so nice to put on a tank top and feel like I was not going to get extra attention. It felt good

Getty...is tamoxifen a form of chemo? thanks for all the wishes on the early departure of the drains! It wasn't the old lady at all but rather all your good wishes!! I guess like they say, watch what you ask your friends to wish for you!!!

Ducki: there was a link here talking about healing scars and they all agreed on something you can buy at the local pharmacy and how it worked pretty well. When I find it, I will pass it on. In the interim, Vit E capsules, open them up and put the E directly on the scar. I steam w/lemons and put vit E on my face 1x per week and the effects of E are wonderful and moreso when the pores are open so perhaps after a shower? Certainly might not hurt.

Jbl: that HGTV has gotten me thinking so much! I have a room off my kitchen which I don't know what to do with....that was before a month of HGTV! Their solutions are cost-effect and obvious once you are watching regularly. I am also addicted to all the shows where people are looking for new homes and I am also trying to guess which one they pick! The guy that does the basement renovation show where he helps people get their basements ready for renting is so very easy on the eye sometimes I forget what the hell they are doing! He is very distracting. So for that room next to the kitchen, I bought a Poang chair at Ikea and put a few Home Goods items in there and it is starting to take shape thanks to my HGTV watching because I am not too creative by nature, truth be known!! Also, about the drain leakage, isn't that scary? I did not know what to do.

4luvofz: I did not know that about Neosporin either. Thanks for the info.

Laurie: showering and swimming?! Great news! Speaking of reaching for your back, yesterday I kind of forgot I had a bmx w/immediate recon exactly 3 weeks ago and went to scratch my upper back and what a pain I got in my neck and it went, quickly, like 5" down my spine! I guess I woke up some nerves....very uncomfortable business, that nerve-waking up stuff!!! My scars went light as well with the dissolving stitches which looked like monster teeth first view!! Your scars, however, sound like they are coming along quite nicely and congratulations to you on that

Jeanne: I hope you are doing well today and the swelling has gone down overnight. Please update and let us know what is going on as soon as you can. You are in my thoughts today, woman!

Good day to everyone...keep smiling...it works!!!!!!

Laurie: I just realized, when I was looking at the June list, you were the 30th so you are doing absolutely remarkable.  I was the 22nd as was MistyJ and Circe...where have they gone?! 

Hi ladies, I have my first fill tomorrow.  I am so excited.  It's been 3 weeks since TE surgery.  Usually he only waits 2 weeks but he was on vacation.  He told me previously that he does 60cc's every 2 weeks until full and then he waits 3-5 months for the exchange.  However, during surgery he got 100 in my previous mastectomy side and 180 in the prophylactic side.  He said he will do 20cc more in the lower volume one each time to get it caught up.  

Here's a question for the ladies who have had fills already.......do you notice 60cc's??  Will I be noticeably bigger?  lol  Just want to start seeing results, so impatient   I figure it'll be a couple of fills before I start to feel like I am growing in size.