October 2014 Surgery Sisters

At one point i tried to calculate how many breasts were removed from all of us, how many implants exchanged in and i got a headache.  It was over 50 breasts at least. 

Hummingbird, I wonder why our desire to read is diminished for a time. Can't even come up with a guess. I used to think it was because anesthesia keeps you in such a fog for so long. But now that I've discovered TIVA, I'm clear in days, not weeks. Any guesses?

Sharp zips, zaps, and zots are completely normal. They can be intense but don't last long. It means the nerves are awake and plenty pissed off!! You had a separate incision for the SNB, right? It's very common to have pain down the arm after an incision in the axilla. Some women report it as going down the back of the arm all the way to the elbow.

Hi everyone, I have been silent on the boards for a while, but I am reading every day and think of you all often. Best wishes to all those having surgery or follow-ups today. I am 5 weeks out today, and am feeling good: still some aches and pains, but nothing requiring meds. Reading through these threads, it is hard to believe that 7 months ago I was living in blissful ignorance of breast cancer and all that it brings with it. This process is so scary, painful, ugly, and sometimes downright ridiculous - but I think some good can come out of it, too. I never would have chosen this of course, but I am still thankful to have found this community of support. I draw strength from each and every one of you.

I am feeling nostalgic today, so I wanted to share the blog post I wrote after my diagnosis in May. I am a long distance runner, so the blog is running-focused, but then, I have always thought of running as a metaphor for life.

My initial surgery was five weeks ago today, and my debridement two days ago. Sharpei has just about disappeared! She was one sick puppy with all that necrosis! Now my little lump (deflated for surgery, so maybe only 200cc's) must be like most of yours with TE's. High and roundish. With a winking incision. No blue eye shadow, though. Gone. All the sad skin, gone.

My surgeon reported to my husband what she had done and we will have to call him the husband who is an unreliable reporter. He said she had to use staples and did not need to deflate me. There is not a staple in sight and I am noticeably smaller.

I have to give the guy credit, though. Ten years ago when I had a six month ordeal of diagnosis, consultation and eventually lumpectomy and radiation, he only took me to two surgeries and then maybe he met my radiologist. Once. He has met all my doctors this time and taken me to my appointments. He is semi retired now, too. He tries, but he is so uncomfortable with all of this. In our marriage he delegates all the medical stuff to me, including most of his medical issues! It is just the way it is. Even with the cats, always when we had children at home.

I am grateful for you and your shared stories, my Visiting Nurses and a couple of friends with first hand experience in all this. I would hate to be alone for something like this.

I was energized this morning but am now feeling sad again. I am trying to accept the reality of this. My body is changed and I don't know if it will ever feel normal again. I know the TE is temporary (6 months of this? It keeps hitting me in the sternum, I can't really bend down or it catches, and it just feels so strange) but does the prosthesis feel less intrusive? 

I know I had cancer in the days before I was diagnosed, but in my ignorance I had a false sense of safety. Right now is the best time I have because it is the only time I have. The future is always uncertain and the past is passed. How can I accept this new reality and live with joy and serenity now? I know it is okay to feel sad and that I do not need to hold onto that feeling one minute longer than necessary. Maybe a breathing meditation, letting out the sadness on the out breath, will help me find peace. 

I will not have enough time to get my fills before the end of the year and our plans to winter in Florida. The cold, the gray, the dark nights are not healthy for me. My weight is ballooning! I have been working on this Florida dream for years and finally had achieved my goal of a light and activity filled winter when I could maintain my weight and feel good. I have so much work to do to finish this condo and create our winter home. 

What can I control here? What do I want and how can I get it? This has been a wonderful year. How can I wrap this experience into that story? How can I make peace with my TE and the five weeks I have " lost" so far, getting to this point. I made a tentative date for my first fill, the last Monday in November. 

 I have read others' posts with poignant, conflicting feelings. The shocking, new, changing diagnoses, the problems along the way, the struggle to explain these matters to young children, the conflict between needing to care for others and deliver at work while needing so much self care and rest. My heart lurches with each new disappointment and occasionally rejoices when someone gets good news. Breast cancer can seem overwhelming. But if it is not going to define me, I need to get back to a more normal life. Ten years ago in a support group we were counseled to view cancer as a chronic disease. We will just keep treating it. 

This is my chronic disease. I need to accept it and live with it, manage it and get on with my life. I need to learn to love this ridiculous TE! Really?

Sharpei 

Hi Ladies!   I decided to make a bold move as my DH would say and saw my PCP today.   I wanted him to check my UMX incision and the seroma that's developed under and across Breast but also I was hoping he had my Path report

GREAT NEWS for the first time since this journey started!   ALND nodes were NEGATIVE !   How awesome is that?   Whooohooo!   Can you tell I'm happy ?   I won't know what treatment I might still need, if anything, but just the fact that it hasn't spread to any more nodes is the best news.   I could have flown home! Lol

Sorry about the blue eyeshadow Sharpei but it would probably have changed to some yellow-green variation anyway so just as well I'm glad you don't have to deal with staples... just the thought of it in such a sensitive spot... Ouch! My BS had to remove part of my nipple with Lx and it didn't look too happy so it's just as well the UMX was done. It's ok to feel and grieve the loss and then in time celebrate the little and big victories that come later. How perky you will look on November 24!! Hugs!

Hi Trails! Glad to hear from you! I read your blog, thanks for sharing

Thanks Ridley! Yes exactly, it was this feeling that I could take a deep breath and exhale for sure!

I am another one who reads what everyone has posted but I can't seem to find my voice lately. I am so disheartened when I read the bad news and thankful when I read some good (woo hoo Su-CQ!). It's unbelievable to me how many of us there are in this month alone.

I have some survivor's guilt because I know if not for what my mom and my sisters went through, they probably wouldn't have caught mine at stage 0. My recovery has been free of any serious complications. Yet I look at myself and feel sad, even though through the skill of my PS, I have a beautiful reconstruction. As Whippetmom would say, I am having "emotional issues after the exchange"! Some days I feel energetic and vital and other days I want to hunker down and cry. What's up with that?

Anyway, ladies I'm grateful for having a place where I can talk about these things, because I know you understand. Hugs to everyone.  

Su - SO happy to hear the rest of your nodes were clear!!! That's great news.

I'm so touched by so many of these posts - they all seem to echo pieces of my puzzle, too. (How's that for a thoroughly mixed metaphor??)

I hope all went well with Akitagirl's ALND today and that everyone will have a good weekend.

Su, congratulations! Sleep well tonight.

Hummingbird lover, hope the evening was relaxing and fun, you wild thing!

Sandra, thanks for some clarity there. I'm not going to like the fill process either, huh?

3littlebirds, you have had a lot of work done. Timing and experience may have been on your side. But we are in here together.

Ridley, I like your friend's theory. I feel as if I have chemo brain without chemo these days

Trails, your road has been circuitous. Glad you are feeling better.

Tomorrow is another day. Good night all.

Sharpei

Welcome to those who have recently joined.

Again Sandra Thanks for the Lymphodema info. I had 13 nodes removed and have been reading your posts, I signed up for the wristbands to remind people to not do blood pressure or blood draws on that arm and they already came today. They'll be handy with another surgery for the exchange.

I want to fly next weekend, and am trying to make sure its going to be OK. I had my 1st post surgery fill today (no pain). She felt it was OK and will give me a letter for security in case TE signals alarm. My team meeting is Monday, but my PA-team coordinator and great support-has scheduled an appt. for post surgery arm measurement (had a measurement pre surgery), and a visit with the physical therapist to determine if I should wear a compression sleeve on the plane. Having the same arm pain as others-I can't imagine how something snug will feel.

I felt this was a small window for me to travel-I was on chemo from May-October, then Oct. 15th surgery, and radiation begins once fills are complete in 2-3 weeks. My DH was laid off 2 weeks before my diagnosis, and has recently taken a job in NC, so he commutes home on weekends. I want to go and help him find a humble abode.

I am not planning on moving at this point-still so much treatment/recovery to finish, I also have my 89yr. old mother living with us, and thankfully our 26 yr. old son lives in an apt. over the garage-who helps out alot taking care of the house and property. He has gone to chemo with me when my husband wasn't available. I also have a great job that I'm not ready to give up until we are sure this job is more permanent than the last.

Three years ago, we both gave up our perfectly good and secure jobs for a new adventure. Unfortunately, a couple of years later, a new CEO at my husband's company wanted his own people. It was a tough time for him-it wasn't until about a week before my surgery he could even say the word Cancer or tell even our closest friends about my diagnosis. I was the opposite-gathering info from those who had been through it. I often wonder if the NC job was a fight or flight reaction. (If I don't see it, its not happening.) His brother was diagnosed with CLL in June and admits he is still in denial and hasn't taken any action yet-although there is not urgency at this time with his particular case.

I have unofficially gone into work a couple hours to begin my transition back. I was beginning to get used to being home-but do miss my job and everyone I work with. I worked throughout chemo.-It is a distraction for the mind. And, like others-I was feeling a little down-but just visiting work made me feel so much better!

Hope everyone is feeling better and has great weekend plans!

Four, what you are feeling isn't normal. I'm concerned that you may have some lymphedema or some other contributing factor. There is no way a little fill should cause severe pain. 30 cc's is only 2 tablespoons of saline and is spread out over the whole TE. 50 cc's is 3.3 tablespoons. I've never heard of tendinitis under your arm...maybe it's called something else more commonly. Radiated skin is troublesome, no matter you try to accomplish, BUT you shouldn't be suffering like this.

As you know, my road is much easier than most others here, not having a cancer diagnosis--and even I can't get interested in reading a book! First week was concentrating on resting and healing and draining tubes; second week, I had the great fortune of having my best friend with me, so when I wasn't resting, we were talking or going out for quick shopping trips or watching TV. This third week, I've been catching up with online life--BCO, Facebook, paying bills, etc. I also really, really want to clean and tidy up, but so far not much actual progress has been made on that front. I have at least three new books (that I can remember) that were given to me for my recuperation period. Not one has been opened, yet I do want to read them all! I think I'm still much more interested in reading about my Surgery Sisters than about most other things, and the ability to shut out the world to delve into a book just isn't there!

Four,

Sounds like you could have axillary web syndrome with cording or postmastectomy pain syndrome. Cording is not an uncommon complication. I had a touch of it for awhile myself. Here are some links

http://www.lymphnet.org/membersOnly/dl/reprint/Vol_25/Vol_25-N2_What_is_cording.pdf

http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

From Memorial Sloan Kettering Cancer Center - on postmastectomy pain syndrome

http://www.mskcc.org/blog/relieving-pain-and-other-symptoms-after-breast-surgery

 P.S. As a longtime AFAA certified fitness professional who has taught many yoga and Pilates classes, in my opinion your doctor's nurse is just plain wrong. There is absolutely no reason why you and yoga can't resume your love affair. It may be altered at the beginning as you heal, but that's it! You shouldn't be doing anything this soon, but in a month or so it won't be a problem unless you are still having pain. As I was being certified, I was required to learn how to work with people after breast surgery. Make sure you find a AFAA or ACE certified instructor.  

The funny thing about not having a nipple is it looks like a Barbie boob.