DIEP 2013

Thanks nahahi. I will keep wearing it. I DON'T want to jeopardize this wound and have more problems. No way. What's a few more weeks at this point anyway.

Bailey, I hate when I lose a long post.  Frustrating, and then you just can't muster up the energy to do it again.

SBE, I once got low potassium from taking a diuretic I had no business taking.  In my early twenties my roommate, and I got into crazy weight loss techniques.  I was so close to being bulimic.  Luckily, I snapped out of it.  But, my point is, are you by any chance on any high blood pressure med that has a diuretic in it? I feel silly asking you such a question since you are a nurse, but it never hurts to ask...right?

Jbloom, you are cracking me up with the hearing loss.  I never heard about a connection between hearing loss, and dementia.  Interesting. 

Good morning everyone i am Up early today and was reading the posts.



I have a big blackboard up in my kitchen that i use for reminders, take vitamins, get milk, pack school lunches, etc...but I just love the quote "Healthiest me I can be" it stopped me in my tracks when I read that, I am going to write that in big letters on my blackboard. It's a perfect reminder to try to do what's best for my body and still be able to enjoy/live in my body.



I was wondering if anyone else had experienced this, I notice sometimes in the late afternoon my tummy will tingle in spots. It feels like when you foot falls asleep. this is relatively new. It goes away after a minute or two, but it seems to be happening only in the evening even on days when i havent overtaxed myself. I am not worried yet, but I would like it to stop.

Gwenny, I turned 58 on Sept. 13!

Nihahi, I was referring to the processed soy comment.  If we are ER+ are we supposed to watch consumption of the soy meat substitute products?  I asked about food and my BS said I could eat anything.  I guess I should have asked my MO.

lol @ jlbloom : AAADD, age activated attention deficit disorder Love it!

sweetpickle, the renaissance fair sounds like so much fun! I've always wanted to go to one.

goldie - so glad you are cancer-free.

mrtw - yep, get that lots. Some days are worse than others and I can see no link to the amount I do. I guess it's just a healing thing.

jlboom - my MO said soy meat replacement products, tofu, soy milk etc are fine (I'm vegetarian). The only thing he said to avoid are OTC supplements.

My warrior spirit has come out fighting today. I've been sitting here moaning about this enormous, hard, lopsided, painful noob and telling myself it's only 3 more weeks until I see the PS, then it hit me reading all your posts here about taking an active part in your own care or the care of loved ones that that is precisely what I need to do. I'm tired of not being told what's going on. My PS never mentioned half the things I have experienced (e.g. removing bits of rib, not being able to stand up properly for weeks, lots of revision surgeries to come) - I had to find them out through this thread. I will be eternally grateful for that, don't get me wrong - you ladies are the best possible resource! But it annoys me that doctors can just play god with our bodies, without consultation with us, keeping us in the dark, not welcoming us into the decision-making process. I want to know what is going on with this noob and am going to make an earlier appointment, because I'm scared and in pain and I deserve not to be.

I'm also seeing the hospital oncologist again on Friday and am going to put my foot down about a couple of things. Firstly, why has he not recommended chemo when I fit the profile re age and menopausal status, cancer type and presence of cancer cells in the lymph node, and secondly, why has he not ordered a chest x-ray and bone scan to check for mets (both are standard practice in many parts of the world, especially when there are cells in the node). The way I see it, I had my boobs chopped off in order to minimise the chances of further cancer, but I feel like they've cut me loose without doing everything to ensure the best possible outcome so what I'm going through now could all be for nothing. It's past time for me to take my health care into my own hands. I'll get a second opinion with a private oncologist if he continues to treat me like a number instead of a patient. Just to be clear, I'm not going to insist on chemo!!! I just didn't get any explanation as to why he decided against it, I got no say in it and I don't understand how he can be so sure it's not needed without doing any tests to check for mets when there were cells in the node. I just want information that enables me to take part in decisions relating to my well being.

So I can be the healthiest me I can be.

Lahela,

I just read your post.  I agree that you need to get all the information that you can from your MO as to WHY they came to the decisions in your treatment that they did.  I don't understand why doctors don't better explain the "whys" - many, not all, tell us "this is how it is" without explaining how they came to their conclusions.  I sometimes feel I ask too many questions, and sometimes I don't ask the right questions, but, I hate that I have to ask in the first place.  Oh, and a second opinion is an awesome idea.  I waited 6 months, but I am glad that I did it.  The biopsy path and my BMX path differed greatly.  The second opinion (from Johns Hopkins) concurred with the biopsy.  Needless to say I switched MO...when my BMX showed I had a "rare" cancer, generally not seen in women my age, he did not question it.  So, I am a big proponent of second opinions.  Do they do the oncotype testing in Switzerland?

Well, Nihahi, put me on the schedule for stage II on 12/19. It must be done lol. Busy at work ttyl.

Grit your teeth, girls...it's October!  Time for pink ribbons, pink tutus, pink wigs, pink striped stockings, pink spatulas and oreos and hedge trimmers and toenail clippers...

Sorry.  I absolutely, truly, appreciate the support and encouragement that PEOPLE want to provide when this month's activities cause them to remember breast cancer and express thankfulness for survivorship.  It's the party atmosphere and over-the-top marketing of "buy lots of pink crap!" that I enthusiastically despise.  

Rant over!  Happy Tuesday, everyone!

sbelizabeth - I was JUST ranting in the lunch room here about Pinktober to a co-worker as HR was putting up October calendars. 

I did not like it pre-BC, and hate it even more now.  Last week I went to get my hair done, the girl doing my hair is a friend, so she knows about the BC...not sure why, but at somepoint the topic turned to Pink, and I went off on a rant. Turns out, she showed me they had a ton of hair products...JUST in for PINKTOBER.  After my rant I apologized, she said "don't, I honestly never really thought about it, but what you said makes sense".  People do think they are helping, so I do feel bad going off, but they just don't get that this is not fun, there is nothing pretty and happy about it,  and that a lot of companies are making good money off of marketing "pink".  Money that BC researchers don't see. And what about all the other ribbons?

Ok, done.

(Edited to finish my sentence added "calendars")

http://www.vcstar.com/news/2013/sep/30/trauma-nurse-grateful-to-be-grandmother-after/

This is the last (hopefully!) story in the 2-year series of the Ventura County Star newspaper covering my breast cancer.  It came out this morning.

Just so you're aware, if you open the photo gallery there is a very graphic photo of the DIEP, with me lying on the operating table.  It's when they were removing the abdominal tissue and you can see a lot of plain surgical work in progress.  Stay away from that one if you'll be disturbed by the image.

I think this link takes you to the story that you don't have to be a subscriber to view, but if it does, and you're interested, PM me.  I'll help you get in.

What a journey this has been.  I am so happy and thankful to be alive.  Katy

Katy - great pix of you and Aubrey.  Can't access the article as is subscription only.

Pinktober - YUCK!  I never, ever really liked the idea either.  The one year I tried to do a walk - it rained.  Telling me something.

SBE: great pic of you and the baby, but you do have to sign up to view article.  I am going to attempt it in a little while when I have more time, but if it's like a lot of newspapers it's for free.

Aspinner, I hate to disagree with your grandma, because they are usually right, but this time I think she was one of those stoic types that was taught not to cry.  I firmly believe in a good cry now, and then.  It's good for the soul, get's rid of excess fluid, and exercises the lungs.  If you want to cry....go for it.  I give you permission to break something if you want to (nothing expensive, or important), and then you can make your list with a much clearer head.  I once went to a therapist (mental kind), and she had a foam bat, and if you wanted to you could beat the poop out of things with it, and it does make you feel better.  

I wish we could all sit down around a cozy fire in our most comfie pj's, with a glass of wine, and talk and talk. I need quality time with people who know how to listen.  I feel like i am always listening, and nobody hears me. I have had three phone calls today from various friends, I listened to marriage problems, what college is my son going to pick problems, and I can't decide what tile to get for the bathroom remodel.  Not once did anybody say, "how are you?" They did for a month, or so after my bmx, then it's just forgotten.  Hey, I am a good friend, and I "always" want to hear what is going.  Maybe, it's me.  Have I forgotten what it's like to just hang out, and have fun?  
 

Crap. I just picked up my Tamoxifen and it had a pink cap. I am not as annoyed as most of you are about pinktober, but that cap really bugs me. Does every rx get a pink cap???

On the bright side, there is a spot with three newswomen on our local channel. They individually talk about the importance of mammograms. No pink to be seen. Sponsored by Komen. I like that.



I had a good appt. with my PS today. I will hear this week about a date for Stage II but it will probably be in 2014. I am ready but my PS is busy. The surgery will only take 2-3 hours. I told him to stay away from my thighs because although they would look better after lipo, I don't want wounds beyond my torso! I can only deal with so much......There is a big area of necrosis at the top of my non-bc boob. He will try to remove as much as he can. He also sculpts the belly to get that "aerobic instructor" look. Those are his words, not mine! I have never aspired to look like an aerobics instructor but we can go there if he wants to! I will look like an a.i. with pudgy butt/thighs.....hmmmm. He will also pretty up the ab scar, lipo my side muffin tops, fix my puppy ears, shape up the boobs a little. I will wear compression for 24 hours/day for two weeks, then during the day for two weeks, then during activity for two weeks. I am more excited than nervous at this point. I am so grateful to all of you because I felt prepared with the questions to ask. He doesn't do nipples until three months after Stage II. This whole hootenanny will take me two and a half years!



Sherry, thank you so much for checking on the shangrila villa! I love all of you, but I think a week would be too exhausting for me. Now that I'll probably have to start over with my insurance in January, money will be a little tight, too. Something a little less grand and less pricey would work better for me. It just has to have a big cozy place where we can talk as a group if we want to. And, heads up, I evidently snore loudly so I may have to sleep alone!



Love you guys!

Jeannie - thigh lipo doesn't give you any leg wounds.  They are very tiny and well hidden.  If your PS is willing, you might want aerobic instructor legs to go with the abs.  Just a thought.