September 2013 Chemo Group

BabyRuth

Hey everyone!   I have been checking in occasionally but have not had time to post until today.  I have so enjoyed all the pictures of everyone's hair regrowth and also vacation pics!  For those starting radiation, I know you can do it!  It will come and go before you know it.  For those still going for the fills, keep pumping up those boobs!  You will be glad you did when you see the final result.  It is great to see so many of us back to living life and enjoying it!

  I had my 3 month PET scan and got the results last week.  I am happy to say that I am "grossly unremarkable!"  That is what the report said.  That just cracks me up!  In other words I have again had my results come back showing as NED!  I have almost made it a whole year with out a recurrence.  That makes me very happy!  I feel so blessed to have maybe finally turned the corner.   I am growing weary of the 3 month PET scans.  I feel that it is way too much but my oncologist says with my past history it is the only way she feels comfortable monitoring me for a while.  Hopefully we can go at least to every six months soon.  I have a feeling that my insurance will protest the scans in the near future.

knightzoo-love your picture! 

LHL-what a busy weekend.  That would be exhausting!

KJ-you look like you mean business with that gun!

70charger-feel better soon!

I hope everyone has a happy Monday!  I think about you all every day and am so grateful for our group!

70charger

Baby  Nice to see you!  Happy dance for NED!!!!!

Anonymous

I discovered my tumor from a mammogram. I'd felt it before, but I've always been cystic and it didn't feel any different than previous cysts. I was actually 9 months overdue for my mammo, since I'd broken my leg and didn't have it on time in 2012. As it turns out, that was a good thing, since if I'd had it on schedule in 2012, I wouldn't have had my 2013 mammo until 3 months later than I did. My tumor grew so quickly, my MO says it probably took only 2 months for it to get to 4.9cm. 

Well, I had a fabulous meetup with my sister at a hotel in San Diego
this weekend. We walked around town until we dropped, saw a play, went
for facials and stayed in our pajamas, ordered room service and watched a
marathon of Say Yes To The Dress. Great fun! The best part was not
thinking about cancer, radiation or possible recurrence for 4 whole
days. Back to reality today, but at least I see the light at the end of the tunnel.

70charger

so

You girls are packed & ready to go. I apologize to all whose likeness is not on the sheet. I'm not computer literate & just printed out the montage that someone was so kind to do. YOU ALL are with me whether I have your pic or not. Now lets get a few days sleep & get ready to PARTY!!

lighthouselady

Woohoo 70charger - have a GREAT time!

kjsimpson

Knightzoo,   Congrats!!  What a wild and wonderful month! 

Lighthouse,   you are one enduring mom!!  Four games this weekend was enough for me.  BUT, our games come with free rain!!  ;-)

70Charger,  you need to keep that pic handy for Vegas!  Have fun!!

Clickchick,  Glad you had a great time!  San Diego is one of my favorite places to escape and enjoy!

Babyruth, CONGRATS!!  That is awesome!!  I have a scan on the 18th.  Am a little apprehensive, but hoping it confirms the pathology reports and optimism of my docs and family.  :-)

All,   it is finally warming up here in the NW!!  Yay, we made it to 72 degrees today.  I'm going for a walk!!

Does anyone else here kayak?

kjsimpson

I've been thinking about creating a facebook page for us.  Interested?  Facebook just seems so much easier to use than this discussion board.  Pics are easier to post and threads can be followed easier.    Was thinking of setting it up a little like the IBC facebook page (can't show you, since it is private), but it would be set to "Private" (invite only) and "Secret" (no one but the members can see the posts).

Anyone who has posted here would be welcome there.

What do you all think?  If enough are interested, I'll set it up.  Would appreciate a couple of volunteers for co-admins.  Other than that, I think it would just run pretty smoothly on it's own.  No one here seems dangerous or obnoxious... well... except me with the gun and all...  ;-)

audra67

kj-

I have two guns, one in car, one by my bed and I have a conceal and carry license...so I might be dangerous also...:)

Well, we do live in Texas so I guess we are just normal here

LOVE the idea as I have trouble writing much on here and working the program..duh..

KBee- you are sweet and encouraging and thank you ! My hair is super dark though , so maybe just too small to show yet...wahhhhh~~

Babyruth!  Hoooorayyyy that is wonderful!!!  Thank God!

70 charger- have a wonderful wonderful vacation!

josgirl- I liked the integrative MO also and learned a lot, got a lot of vitamins from her...and eating a lot more greens than I ever did...

betterday, nat, Mercedes, - hope you are doing well and feeling better

Knightzoo= great photo of your tall men!  You look cute and tiny

LHL- hope you get some rest and have a relaxing lunch with your friend...I think your stamina will build from the exhausting days, mine has seemed to..

Praying for you all to have comfort and rest and positive happy thoughts and a future of hope!!!

We are conquerors!

lighthouselady

I would love a Facebook group.  It would be sad if someone on here wasn't on FB, but they could create a fake profile just to join our group, right?  I'm on FB all day pretty much, so I'd post a lot more probably.  I wouldn't mind being admin either.

Tomorrow is my first rads.... #1 of 33.... let's do this!

SouthernGirl1974

goodluck LHL let us know how it goes

I am on FB EVERYDAY WOULD E MUCH EASIERTO KEEP UP AND YOU CAN CREAT A CLOSED GROUP SO ONLY PEOPLE YOU INVITE COULD JOIN

Cougarlicious

KJ - great idea!  I'd love to join a FB group with you ladies!

BabyRuth - thanks for checking in and congrats at being unremarkable!

I also have another delayed diagnosis story, like many of you here.  I felt my lump easily (due to small boobs) three months into my pregnancy.  I had a history of fibroidadenomas so I assumed that was it.  I brought it up to my OB but due to my young age, lack of history, and low risk profile she assumed it was just pregnancy changes and told me to keep an eye on it.  I brought it up again at the next two checkups but since they weren't scheduled full exams she just kept telling me to wait until the next exam.  One night I felt my lump throbbing and it hit me that it was significantly larger than when it started.  I called the doctor the next day and she had her nurse check me.  The nurse immediately sent me to get biopsied.  At this point I was still pretty certain it was a fibroid, I even told the radiologist that's what it was.  She called me the next day while I was at a work conference and told me the news.  I didn't really "get" that I had cancer; not that I was in denial, I just didn't know anyone with cancer so I didn't immediately think of all the bad stuff.  Figured I would just wait until the docs told me what to do next.  I went back to my work conference and proceeded as usual.

It's certainly been a crazy few months!  Despite the bad, there have many silver linings in this whole journey for me.  Finding you guys has been one of them.

simplelife4real

KJ....I love the idea of a FB page for us, it would make it so much easier to do comments and hit the "like" button!  I would also be willing to be an administrator of the page.  I belong to a couple private pages for triple negative BC.

These stories of delayed diagnosis make me sad.  Unfortunately, my story is similar.  We were in the middle of moving to a different state and changing health insurance policies when I realized the lump I felt wasn't going away.  I just hope I didn't kill myself by waiting. 

Sometimes I feel like every decision I have made along the way regarding this cancer has been the absolute worst possible decision I could have made.  I know that I've tried to make good decisions....at least every step of the way since I learned it was cancer.  I try to make my decisions based on all the information that I have at any given time and try not to let fear dominate my decisions.  I also have had to trust that what my doctors tell me is in my best interests, and believe that they do have my best interests at heart as they are making treatment suggestions.  So much about cancer is still unknown.  It's frustrating what a "crapshoot" it feels like for a lot of this and how helpless the doctors are at stopping cancer once it reaches a certain point.  Sorry to sound a little negative....I just found out one of my TNBC sisters that has been very helpful to me during treatment learned she has cancer  in her lungs.  She was diagnosed only a few months before me so it makes me SO SAD.  This is some scary crap!  Apparently, she had spots on her lungs at the time of initial diagnosis, but they just determined last week that they are malignant.   I hate cancer!

On a happier note, I'd done with 5 of 33 rads as of today.  

Lighthouse, I'm so glad you getting your rads....whoopee!  We can do this, just like we have been able to do everything else.

Hugs to all of you.

Kay

VintageGal1111

I love FB, I'm always there!

KBeee

KJ, I am also on Facebook quite often, so that would be great.  I'd be glad to help admin also.  I am a part of 2 other secret/private groups, and it works really well.  I keep wanting to "like posts, and can't here!!!!!  I have never kayaked, but it looks like a ton of fun!  Our family actually talked last week about renting some kayaks and hitting the river this summer for a day or 2.

Simplelife, Sorry about your TNBC sister.  I hate cancer.  I am hitting the bike trails again today.  Thanks again  for the insiration.

Cougar, I agree that this group has been a huge silver lining.  One of my friends had a friend diagnosed late last week with a huge tumor and they started chemo yesterday, so she had me call her.  My first bit of advice was to get on here and find the April chemo group.

LHL, Yay for getting rads underway...and closer to done.

Audra, I scrolled back through my weekly pictures, and mine was similar length at that time.  It seemed to take off shortly after. Your hair looks light because of the lighting in the picture.  Mine came in very dark too...except for the gray...it came in with a LOT of gray.  My hair person is calling me today to set up a time to get back to my old color and ditch the gray.  I've never colored my hair before (too lazy), so this will be a first.

70 charger, That's awesome!  Made my day!!!!!  Can you drip a little of that Corona towards my mouth in the picture while you're there...and maybe lay me flat on the beach for a while?  It's like we're all Flat Stanley's in your pocket!  (If anyone has had an elementary age kid in the past 10 years, you probably know Flat Stanley).

Chickchick, It sounds like you had a fabulous weekend!  Glad to hear it!

Babyruth, Glad to see you back!  Great news on the scan!!!

Knightzoo, Congrats on the accomplishments of you and your family!  You deserve to be on Cloud 9!  Great picture!

It is supposed to be decent out today, so I think I am going to go for a bike ride, do some general cleaning, and then hit the garden center and get some early stuff to plant like lettuce, onions, snow peas and such.  I may not get them in the ground until this weekend, but at least it's a step in the right direction.  I eat lots more vegetables when I can just step into my yard and pick them.

 

 

70charger

KBeee  This ones's for you.  Looks like your are thirsty!

knightzoo

I love the FB idea! SOooooo much easier!

kjsimpson

Ok, sounds like Facebook is popular.  I'll work on setting up a page later tonight and post the link here. Would prefer to keep it to us only. 

Several have volunteered to be co-admins.  Thank you! 

lighthouselady

Ok, just had my first rads.

Am I crazy to "feel" something afterward?  I keep feeling these faint.... not really pains, but sort of....all over that foob.  Is it because of the position I was in for 15 minutes?  Is it all in my head?  It's not my skin, that's totally numb.  It's more like a slight pounding (like a headache) only in my breast area.  Weird!

travlmom

KJ - great idea on the FB page.  I read more here than I post since I did not endup starting Chemo until the beginning of October.  You all have been the group I look to as to what to expect next. Amazing women and hard core fighters!  My radiation started late as well (last week) so I fell out of the Winter rads group too. But read weekly.

Lighthouse - congrats on starting Rads - I have #4 of 33 today. so far so good.

70's - so nice of you to bring the other ladies along on vacation. 

keep kickin cancer's a$$!

kjsimpson

I 'felt' the treatment more as it went along.  The radiology techs say we don't feel anything... but they haven't had radiation treatment.  ;-)

You aren't crazy.... well... maybe you are... but not because of this.  LOL

 

70charger

yup, I think some people feel the tingle with the 1st rad , others later on. I felt mine on 2nd/ 3rd.  When u get a zinger you'll know it's working! The zinger is not THAT bad it just is so sudden it takes your breath away & scares you to death, it's really quick & then done.. ALL normal

audra67

70s-  LOVED the photo with KB and the Cerveza's!!!  Hope you are having fun!

KB- thanks for encouragement, can't wait for my hair to 'take off'!!!  Have fun outside biking!

 I am having swelling in the foobs and arm pit area/ I have been seeing a PT for LMD 3x/week since January.  I just added a massage therapist that does MLD and uses a HIVAMAT- it works way better and lasts longer without swelling.  but of course, she's not covered under insurance and the PT doesn't have a machine..Hoping it doesn't get worse on vacation at end of month after 10 hour flight.  I am planning to wear a tight bra and the stupid sleeve...barf!  How could I have lymphedema? They took 4 sentinel nodes out! 

HATE this disease and the changes it has brought physically.  HATE if I have lymphedema, especially in my boobs!!!  This is all SOO annoying, I'm supposed to be done.  The lingering baldness and the cracked ugly nails and scaly peely feet are pissing me off!!!!  I want to be done!!!!  Sorry, had an 'angry outburst' there!  Makes me feel better to let them out when I think them...

Kay- So sad and scary about your friend.  I have spots in liver and one in lung that I am having rescanned in May...made me more worried now...but hoping they are nothing to do with cancer...I know a lot of people have them..!  I know what you mean about hoping the choices we made are correct....I think making a choice in the midst of the diagnosis and the paralyzing fear is HUGE, so we conquered that, and the side effects, and the despair, and the worry, and the pains, and the sadness, so in doing all of that, I think we did the best we could and just need to realize that it is in Gods hands.  I know all of His plans are for our good and a long life and I am choosing to believe that we are healed and move forward!  We could've gotten ran over by a bus if it was our time to go, right?  We also learned suffering, perseverance, hope, faith, in a more significant way than I ever thought possible...I feel very wise after all of this...don't you?

KJ-  I have kayaked, I grew up in Washington and went with friends a lot...super fun...we also had a place in Colorado in the mountains and went at a lake there.  LOVE the outdoors and it's getting warmer here in Texas so we can be out more!  In between the torrential storms - we have gotten a lot of rain this last week, everything turned green overnight, very pretty.

Looks like the facebook thing is happening so that will be nice!  I am very computer illiterate so tell me- how is it that we only see each others posts and not all of our friends see them too?  Please let me know or I won't be able to figure it out...duh...that is NOT the chemo brain, I was always computer illiterate...:)

Happy day girls!  We are alive and we are here!

BetterDay

FB is a great idea, KJ.  Can't wait to use the like button on all of you!

My spinal MRI is tomorrow.  My MO set me up for thoracic and lumbar.  A little worried about the claustrophobia.  I've done several MRIs facing down (such a miserable position), which didn't cause me any anxiety (other than the experience itself).  But I've never done one face up (I assume that's how they do the back).  Maybe I will just keep my eyes closed and pretend I'm in Mexico with 70charger drinking Coronas with Kbeee on a beach blanket!

70charger

Better  LOL  Hey if it works why not!  Good luck with test.

mercedes60

KJ, OK for facebook

70 charger. Thanks for bringing us with you to Mexico, you can put me on the beach anytime, enjoy!

Betterday, i too am claustrophobic, as long as my face and feet are out i am not too bad, if i had an mri fully covered i would freak, i would need to be knocked out lol, however my last breast mri i did put myself on the white sandy beaches, turquoise waters, you get the picture

Yay for all of u starting rads.

Going for my pre-op test on thursday, starting to get hebejebees about surgery.

Hair is growing nicely, more white than usual, i still feel puffy like i'm retaining water or simply gained 8 pounds! Everything is snug on me, ok ok i do have a sweet tooth LOL. Weather is better here about 45 degrees so will start walking more outside, get this bod in shape fir round 2 

Take care buddies!

70charger

http://community.breastcancer.org/forum/34/topic/819880

this vegas reunion might interest some of you

simplelife4real

70 charger, you can take us all to the beach.  I love the idea of us being Flat Stanly's.  We could do that as each of us travels!

Travelmom, I'm just two days ahead of you on rads.

Lighthouse, I also felt like I felt something the very first day of rads.  I get my rads after lunch each day and in the afternoons I frequently feel something.  Ususally, it's my arm hurting (nerve irritation), but sometimes it's itchy skin etc.   Today, after #6, I feel nothing!  I'm just glad for each day that my skin stays normal.  On one level, I like rads the least because it seems so mysterious.  Oh well,  it is what it is...

Audra, I didn't mean to scare you by writing about my TNBC friend.  I agree with you that a lot of people are probably walking around with spots on the liver and lungs and the spots are nothing.  It was discovered I have a huge benign tumor on my thyroid when they did my breast MRI.  They will keep watching it, but I'm not worried about it.  Maybe if at your next scan the spots are the same size (or gone), it will help you to know they are okay too.  I think our chemo got rid of all kinds of oddities in our bodies.  I know Taxol really seemed to "eat" a lot of my sun spots.  It was a little bonus of chemo that my skin looks much better now.       I'm also really sorry to hear you are having issues with lymphedema.  Since I had an ALND and am getting rads, the risk of LE for me is high.   I so do not want to have to deal with that.  I keep elevating my arm and I do some manual drainage throughout the day.  Have they talked to you about doing strength training and slooooowly building up the weights?  I listened to a webinar by Living Beyond Breast Cancer where the doctor talked about studies indicating that weight training has been shown to both help prevent LE and reduce its severity.  The key is to build up very, very slowly.  I started with no weights, then went to small tomato paste cans.  I'm still only up to 1.5 pound weights.  I'm hoping the weight training will pay off in the long run.  There are also some really good threads on LE on this site.  

KJ, thanks again for setting up the FB page.  As you can see from our responses, we are all excited about it!

VintageGal1111

lighhouselady, oooh really? Is it painful, uncomfortable?

I had the radiation simulation today & did not enjoy it one bit! Keeping my arms over my head for almost an hour was a little rough 3 weeks post BMX. I had to do it all a second time because of the breath holding routine. Had to wear those weird goggles?!

They have me starting on the 18th, but that first day won't be a treatment it will be a dry run.

BabyRuth

Great idea about the facebook group.  

Simple-I have also seen the studies about the strength training and I started back in the gym in November.  I have taken it slowly but lately have been adding more and more weights.  I also need the strength training for my osteoporosis that  was a result of my first chemo and tamoxifen. 

I forgot to mention that I went to visit and celebrate my mom's 80th birthday this past weekend in Tennessee.  She is a breast cancer conqueror from 15 years ago!  She is such an inspiration to me.    I just  wanted you all to realize that life does go and there are many celebrations we all have to look forward to.

lighthouselady

Vintagegal - It wasn't painful really.... just like I was aware of feeling "something", which is weird because since my bmx my foobs have been numb.  LOL   I guess my oncology place does things differently, because my rads simulation wasn't very long at all.  They told me the appointment would take 1-2 hours but we were out of there in under an hour, and I only had to lay there for about 30 minutes of that.  They did a CT scan and marked me and that was that.  Goggles??  They didn't give me goggles!