Starting Chemo in December 2013

Crazywabbit

deb, I doubt they would do a PET scan if you had neg nodes, and no symptoms or abn lab test, you are at much lower risk overall.

I had a second one due to persistent cough and low back pain, luckily all good, just bad arthritis and reflux. Both better with Nexium and NSAIDs ( anti-inflammatories)

chicopeach57

My MO said that I really didn't want to subject myself to that much radiation routinely, that it was more important to watch how I felt, look for symptoms, than to have a PET scan. The scan will only show cancers of a certain size or bigger. Also finding it on a PET scan a few months earlier would not change the outcome, so have to just believe it is gone for good. He gave me an 85% survival rate, I think that is pretty damn good so that is what I am going with.

Jodi040812

My appointments went well! I did not see my doctor on Friday since he was out of town. We head back tomorrow, and I'll get my results then. But, the doctor that did my ultrasound said my central lymph nodes were all clear! I have had some rib pain on the right that I told them about. They believe that is from the TE's and holding Lulu on my hip right there. She's a heavy gal and a wiggle worm during Mass😂. They scheduled my surgery for Wednesday. So!

Advice, tips, the do's and do not's ladies! I will not have a cut on my back since they are using the robot through the front to grab my lat. he is going to get some fat from my tummy to inject at the top curve on the right. It was way to tight. PS said usually they wait 6 months to see if that is needed, but he knew I needed it so doing it now. Of course I needed it right? Never by the book😂. The gummies will be put it place immediately. A lot going on there. I expect to be more sore than after the BMX. They did say the right foob will be bigger than the left on purpose. The radiated side will continue to shrink some after the surgery, and it will even out in a couple of months. Ok. At this point does anything phase anyone?! I am just like sure whatever, get it done. As for nipples, we did not discuss that. I really don't care about those but maybe time will change my mind. Pretty excited to not have TE's in my armpits anymore!!! Oh! And my skin held up, so no patch needed. Big week but this time next week I'll be home!

missy6758703

Hi Everybody!! been missing you all!

Good Luck next week Jodi....I'll be right behind you with my surgery on Friday. I will head to Mayo Clinic on Wednesday evening and have appts. on Thursday and surgery will be Friday morning. My best friend Denae will be there with me. I will be getting the fat grafting but will have implants on both sides. I have a feeling that my PS is going to encounter a bunch of scar tissue and don't think things will go like clockwork. I usually haven't been one to worry about the surgeries....I know things can go wrong but i've just left it all in their hands. This time though I have this worried feeling I just can't shake. Maybe it's because of the bad infection I got after my last surgery that I now know things CAN go wrong. Ugh.....or maybe its because this is my 7th surgery in a year and a half. Good Grief.

My Internal Medicine dr. increased my Effexor...not sure if its that or what but OMG i've been so tired lately! Anybody else feeling like this?

Well my dear ladies, on that note, i'm heading to bed!

Hope you are all doing well!

hugs and love,

michelle

tobyholic

ok chicopeach.......I'm taking your advice and I'm going to use your way of thinking.Thanks

Crazywabbit

Jodi and Michelle, sending <<<hugs>>> and best wishes for great surgical outcomes.

I will always worry whether I should have had a mastectomy rather then the wide excision, but my surgeon said the survival stats were the same. If I was your ages I think I would have opted for the mastectomy also.

Lisa, what a rush, zip lining. We should meet up in Ithaca some weekend this summer.

JB I love you new house. The color is beautiful.

Everyone has a great MD- summer is here finally and no daily trips for RT this summer.

Mikesgirl17

Good luck Michelle. I'm sure you'll do awesome! You tough chick you.

RHGSR

great picture mikesgirl on your avatar. Purple is your color. Gorgeous.

Jodi and Michelle - how did everything go?

I've been a little MIA. I'm on day 10 of recovery from open TAH/BSO. Going to see my plastics on the 10th. Hoping to find out when I can get this recon done so I can move on.

Jodi- there was a girl at cancer camp with reconstructed nipples that were tattooed by the infamous Vinny. Never thought I'd say this but... Her nipples were gorgeous.

missy6758703

SON OF A BITCH this reconstruction HURTS!!!!! I had fat grafting done from my flanks....every inch of my body is hurting!

I am so ready for this to all be over

hugs and lotsa love to you all!

michelle

chicopeach57

Went to a wedding yesterday, was talking to a friend that had Hodgkins Lymphoma 5 or 6 years ago, we share the same oncology group. On his last follow up in March the MO said to Bill, "we have been talking about you, looking at your records and decided it has been cured, so we want you to leave and not come back." Wow, I can't imagine how it feels to hear those words! We both got teary eyed. Think I would have cried and danced my way out of there. We will get there one day, have to believe it.

jbokland

tomorrow is my I yr PFC! Man, what a difference a year makes.

Intetestingly, I called on a customer today who's office is in the cancer center own by the hospital. I walked through the breast center and scanned the ladies. Several took notice of my purple lymphedema sleeve and gave me that brief 'ah! I know what that is! ' look. I stopped to chat with one bald lady, proudly showing her bare head and gave her some of my pink ribbon Sassy Heads and a tiara. I always try to carry them in case I run into someone who needs a little gift.

Here is my newly purchased home 1922 bungalow in lovely Mount Dora.

Crazywabbit

JB. What a nice thing to do for that lady. Your new home is beautiful, enjoy it.

I was reminded a week ago of the difference a year makes. I did an special Audubon bird walk that I also did exactly a year before. I was bald then and several people commented on my having hair this time. I told them I grew hair because I was tired of sun burning my head. LOL.

kimie06

jbokland sweet home !! love it

just going through the motions here ladies, I dont know where the time goes.

all is as well as can be for now

love you all

RobinLK

Hello sweet ladies! Currently in Connecticut visiting family and friends. I haven't seen many of them for 5.5 years. It was a long drive, but well worth it.

Beautiful house JB.

Too funny Barb!

Healing thoughts Jodi and Michelle.

Good to see you Mikesgirl!

So sorry about your Dad Kimie.

KimfromCA hope all is able to be worked out.

Chico, those would be wonderful words to hear.

Lisaj514

ok lovely gals! Send lots of positive vibes my way tomorrow. Mamo and us bilat. 6 months since last one. And then there was an area found to biopsy on the L side, my lumpy side. It was benign. Afraid they'll find something again. Anything the least bit unusual they will biopsy. Ugh! My l side has some thickened areas and my R one (the good one) sometimes gets weird feelings (sympathy pains?) and zingers. Have mentioned it every time and mamo, US and mri show nothing. Hoping for nothing but preparing for finding something to test further. Definitely getting nerved up this evening. Ok, deep breaths.

Nice to hear from so many of us again. I've been quiet but reading up on everyone here and on fb. Still think of everyone very often. Let's keep checking in. 1 yr ago we were all finishing and starting rads and our hair was growing back. Seems like yesterday yet also ages ago.

Lisaj514

ok girls.....all clear! Just expected scar tissue and surgical and radiation changes on L and normal glandular tissue on R. I kept asking the radiologist that read my scans"you are sure, right?" Shes the same one that has read my scans prior and did all my biopsys. Nothing to biopsy this time. I was kind of expecting them to find something. But nada, zilch, a ok! Next scan will be MRI in August I think. See MO in 2 wks.

How's the healing going Jodi and Michele?

Robin, so glad you made it to conn.

Have a nice weekend all!

Jodi040812

surgery went well. It was 6 hours long and he did not do the fat grafting. He told my DH that I had way more scar tissue than he expected. The hospital stay was horrible. mD has great doctors but a shorty hospital to be blunt! As soon as they said I could leave I jump up and said yes. My procedure was quite invasive and pain oh lord was there pain. Not going to lie, it was the worse of my life but it is over now.

i had a follow up on Thursday and had two drains removed. 2 drains remain. Hardest part really is driving the 6 hours to MD on one day and home the next after the appointment. 3 weeks in a row I have been in Houston in a hotel or hospital on a Wednesday night. Everything is going ok so the doctor said instead of me coming back next week, to call them when the output from the remaining drains is under x amount for three days straight. DH knows that number I do not remember lol! He is my drain nurse and writes all the stuff down. I have had drainage leaks from one of the pulled drains for two days. Also, I took off my cotton Velcro bra they put on me because it is hitting where the drains enter my body and causing major irritation. I am itchy too but I think that's is from all the tape. I react to the sticky stuff.

I have to brag on my youngest, LuLu. She is two and has been a champ through this! I thought for sure it was going to be awful. But, she understands momma has bo Bos and can't pick her up or change her. She also have up her bottle!!! Yes, we still were on a bottle at bedtime. But not anymore! It has been hard letting other people take care of the girls. And hard to not pick up behind them!!

I have some tightness in the right Breast but all in all amazed at the results. I took a pic and blacked out my scars with black bars to see and they look so close to my old chest. Amazed!

Questions- am I suppose to wear that cotton bra for swelling purposes? Is there any suggestions on how to help the red irritation at the drain entrances? Those thick black stitches are just digging into my skin!! Would you like to see my Foobs? I am so happy that I was a candidate for the robotic surgery without requiring a skin flap. It is just amazing that I did not have to get the back cut or skin patched. Unheard of really. I am still on the fence about nipples. I don't want anymore surgery but time heals right. Who knows what is around the corner. So sharing pic but I did photo edit the light to make it brighter. The right Breast really has some redness on it.

Jodi040812

here are pics from Thursday before my follow up! My IV fell out of my hand in the hospital and blood went all over my pillow, so my arm has so horrible bruising at this point. Just part of it;)

missy6758703

Hello Beautiful Ladies! HAPPY NATIONAL CANCER SURVIVORS DAY!!! WE ARE SURVIVORS!!!!!!!

I am finally feeling somewhat normal again (whatever that is any more!) I can relate to the pain Jodi....OMG why did nobody mention the PAIN?? Holy shit!!! The fat grafting was one of the most painful things I have ever had done to me. My stomach and flanks were one solid bruise. The bruising is all starting to fade now, on my foobs and stomach and is that lovely yellow color. I now have to wear a corset type thing over my spanks for the next month but no bra as my PS uses the tagaderm and creates a bra. I made it 9 days with that on but this morning I just had to peel it off because it was pulling in a couple of areas. All in all, I'm happy with the results and will just wait and see how everything looks when the swelling goes down. I'm actually taking 3 full weeks off from work after this last surgery....haven't done that before even with the other 2 really big surgeries.

Jeanette, your home is beautiful!!! Looks like something from a story book!

Jodi, your foobs look fantastic! I have no idea how to edit the photo i'm about to post with anything, so you all are getting the full monty!

My mood has been much better lately....just finally realizing worrying is getting me nowhere.

Love reading the updates from all.....miss you and hope everybody is doing great and enjoying the start of this beautiful summer!

hugs and lots of love....

Michelle

RHGSR

Michelle and Jodi - Congrats!! Y'all are looking good ladies. Did y'all do implants or flap or both?

Jodi- I will have to post a pic of a drawing my 3 year old drew. He drew me with abdominal incisions. I'm not sure if that makes me want to smile or cry.

Jbokland - LOVE the house. Any pics of the inside?

LISA- your hair is so long. Did you lose the curl?

missy6758703

I did the implants with fat grafting. I was thinking the tummy tuck option would be too painful...ha!

RHGSR

I did the DIEP but wish id done implants. My right FOOB is at least 3 cup sizes smaller than the left (which has settled and spread out). The right keeps shrinking from radiation ( 1 year anniversary of end of rads on July 8th). I'm afraid it's going to just vanish!!

Meeting with PS next week. Was supposed to be finished with all this in December 2014. Hoping 12/2015 will be my year!!

missy6758703

Holli was the DIEP flap real painful? We finished radiation at pretty much the exact same time. I was supposed to have my reconstruction done in February but got that infection in January and had to put it off until now to make sure everything was all gone.

Who all has had reconstruction done now?

RHGSR

I was under anesthesia in OR for 10 1/2 hours. Spent a week in the hospital. I had an "on cue ball (?)" in my abdominal incision so that really wasn't any more painful than my C-sections. My chest hurt. The recovery was long. Came home with drains. I think the most painful has been all the "extras" I've got to experience (total sarcasm)... The radiation pneumonitis, my frozen shoulder, Lymphadema, etcetera ...

Like your infection, all those above set finishing my recon WAAYYY behind. Plus I decided to have a hysterectomy first (my GYN said that way if she messed my abdomen up, the PS could fix it. LOL)

Tomorrow I'll be 3 weeks post op from the open TAH/oophrectomy. Wednesday I'll see my PS again for the first time since late last summer. I so hope we will schedule my next surgeries. I REALLY want to be done by the end of the year.

Holli

Mikesgirl17

Hi girls. Sorry some of you are in pain I have some words of wisdom.) Make sure you get a good tatoo artist for your nipples. I had it done in 2008 when I had the mastectomy and again with this diagnosis. Both times, I used the tatoo artist at my plastic surgeons office. BOTH TIMES, she made it look like a bulls eye. Not impressed! She is NOT good at her job. Even the one (On the right) that she touched up is faded arond the areola and dark brown and patchy in the middle like she drew it on with a sharpie. I would rather have no tatoo than the crap I ws given. Love you all!!!!

DJJ

Hi Ladies, just checking in. It has been a crazy couple of months. I graduated with my master's degree in Cyber Security. I had a scare from my MRI and had to have a biopsy, was just dense tissue, then I had to prepare for my two week "F#ck Cancer" trip to Peru. What an amazing place! I cried when I made it to Machu Picchu. Remember when I started planning this back in the thick of chemo.

I hope everyone is doing great. Kimmie I'm so sorry about your dad.

Tobyholic, I never had a PET scan. I had an MRI and for the first two years I rotate 6 months Mammogram and 6 months MRI. Then from there I should move to the yearly mammograms.

Picture from Machu Picchu!!

Lisaj514

Deb, I LOVE THIS PICTURE! I remember when I listened to your speech at the Avon walk and I didn't really "know" you then but I was so impressed and I remember how you mentioned your trip to peru. You did it! In the most awesome way imaginable. This looks great, you look great! We should all share a 1 yr post victory picture taken sometime this summer. I'm going back to cape cod where the picture below was taken. Will take another. Remember the last one of most of us

And your hair looks great with the red!

Holli, I'm working with using a curling iron to straighten my tight curls. The curls are stil, there but that is my normal hair. The gray is new but getting used to it and I like how it looks with the straighter front but it's a pain to do it as I'm used to just wash, gel and scrunch and go before. And aww, the picture by your son. It's how they see things, at least you have a smile

And sorry for your pain jodi and Michele, glad it's getting better. And thanks for the foob pics...they're looking good!?

Jb, would love to see inside pics of that adorable house

Mikesgirl, Chico and barb, so nice to hear from you

Jodi, love the curly locks!

And DJJ, love the picture again! I want to go there!

RHGSR

I agree Lisa!! New victory pics. I took one in the water in Maui. I was thinking of you girls even out in the Pacific Ocean. Just need to find it. Didn't turn out too well (I look like I'm drowning) which is why I haven't shared. But it'll do for now.

Deb! You DID it. Great picture!!

Here is a great article I found. Thought I'd share in case it happens to resonate with any of you.

Love you girls!! I'm gearing up did 4 doctor appt this week. Wish me luck.

Holli

http://cancerquickfacts.org/index.php/2015/06/08/what-no-one-tells-you-about-surviving-cancer/

Jodi040812

holli- I have implants. Naturelle gummies 450 cc in both Breast. Pain is way better now. Swelling is down and I can feel the damn drain clearly in my back. It will come out next week. Can't wait to be free!

Michelle- you look great! I had the black bar there on mine because that was my cuts. Where are yours? Mine go across the middle of each Breast. Yours looks so good without that Mark! Jealous! Lol!

Up late again tonight. I think my pain medicine is keeping me up. Going to try to switch over to regular Tylenol tomorrow. As for nips, I am not sure of imam going to do anything. But if I do, I will research the artist.

missy6758703

Jodi, my cuts for the reconstruction were following the contour under each breast. He closed the incisions with a "plastics close" and you can't really even see where anything was. I had to have my daughter look under each foob to make sure there was an incision!