Starting Chemo in December 2013

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  • Jodi040812
    Jodi040812 Member Posts: 383
    edited April 2015

    I have shoulder issues too. I can not sleep right to say my life. I need to sleep on the left, but I can never get comfortable. So, I end up on the right and my shoulder pays for it. If you touch my neck shoulder area I would cringe. I was hoping it would get better after recon, but I see that is probably not the case. Never heard of Frozen shoulder! I did have PT all last summer because of it and ROM

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  • RHGSR
    RHGSR Member Posts: 774
    edited April 2015

    I know this had been asked before, but I couldn't find it going back through all the old posts.

    What is the name of the coloring book that was so awesome that one of y'all used?

    Thanks!!

    Holli

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  • RHGSR
    RHGSR Member Posts: 774
    edited April 2015

    had to share these. I loved the brain cancer one but couldn't find it for breast cancer or just cancer in general.


    imageimageimageimage


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  • DJJ
    DJJ Member Posts: 229
    edited April 2015

    Hi ladies, just checking in. I hope everyone is doing awesome!!!

    Holli I love those!!!!!

    I had my four month follow up with my oncologist today. She is very happy with how I'm doing. Minus the hamstring tear that also turns out to be tendinitis....grrrrr Physical therapy twice a week. She is having me do a bone density test just to get a baseline because at this point it looks like I am in menopause. My first MRI is Monday. Surprisingly I not that emotional about. We'll see how I feel about it when Monday gets here.

    She told me about a PBS special about cancer. "The Emperor of Maladies" The history of cancer through new breakthroughs. It's 4 episodes of 2 hours each. I just watched the "The Blind Man and the Elephant" episode that talked about the history of breast cancer. It was really informative. We owe so much to the ladies that went before us.

    http://video.pbs.org/program/story-cancer-emperor-all-maladies/

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  • RHGSR
    RHGSR Member Posts: 774
    edited April 2015

    I've been DVRing them. They are all so interesting and informative.

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  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited April 2015

    DJJ. I watched all three episode of the PBS show last week. Extremely well done and Interesting but a bit emotional when they were dealing with the Breast Cancer part. Good luck with the MRI. I had my 18 month MRI done last week, a month early due to some nipple itching issues. All looked OK except some skin thickening. I have an apt with th BS on Monday.

    holli, great comics. How is your lung problem doing lately. Hope the trip to Hawaii is still on track.

    Hope Everyone's shoulders are responding to PT. I reach up and hang from the top of doorway several time a day to keep my arms and shoulders loose.

    I am going up to our, (or I guess I should say my, now that my husband is gone) cabin next week. We had not opened it for the past 3 years when my husband was not doing well. I decided to try to open it up and enjoy it this summer. It is about 50 miles away, up a scenic river. Great rails to trails bike path and canoeing. I am having a plumber meet me to get the well started, replace a toilet and make sure no leaking pipes. Then 3 years of cleaning. I am sure some mice or other critters have been inside so it will be an adventure since he did all the main maintenece work on it.

    Keep waiting for Spring to arrive. I am afraid in the NE we are going to go from winter to summer.

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  • RobinLK
    RobinLK Member Posts: 840
    edited April 2015

    Coring Book Link <---bahaha spell much?

    Holli, the books are Color Me Your Way. They are available online, at link above, or at Costco.

    Here is the one I am on now. Colored pencil, marker, glitter and metallic gel pen.image

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  • kimie06
    kimie06 Member Posts: 215
    edited April 2015

    GIRLS !!!!

    I have been so freakin busy its redonkulous !! My final exam for biology is tomorrow, will be so happy when its done, I need a break from the books everyday/night.

    All is well, the snow it taking FOREVER to go away and I am sooooooooooooo done with it, bought myself a fancy new bike the other day cant wait to get out on it. we have so many trails here that follow the river system its beautiful.

    I am still having a hard time no obsessing over every little thing with my body, I have a regular dr appt coming up in a couple weeks with a list of things to chat about., does tamoxifen make anyone else run a few degrees warmer !!??

    DJJ - you are right on the dealing with Rock hard chest guy, movin on

    holly - I hope you are feeling better and back to the gym treated you well, I am meeting with my personal trainer tomorrow...shoot me

    everyone is looking so fantastic !! and I keep meaning to get on here more....

    love and hugs to all


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  • trickybarb
    trickybarb Member Posts: 3
    edited April 2015


    Ladies,

    I have actually been reading all of your posts since December 2013. ( yes, I am a silent stalker.)  I also started my chemo at that same time.  Reading your posts has given me great strength throughout this journey.  I have not in the past posted on facebook or any sort of forums, so posting to this is new to me.  I am still continuing my journey having just completed Herceptin March 5th.  I have a reconstruction surgery coming up in the next few months.  The reason I am posting here is because even though you do not know me, I feel as though I know all of you from following your posts.  My daughter that is 16, is having a very difficult time coping with my breast cancer.  Even though I am stage 1 it is in the back of her head that I could die from this in the future. I homeschool (as a couple of you also do) and she has avoided me a lot of the time because she is so overwhelmed by this disease.  She does online courses and stays in her room much of the time.  Do any of you have teens that would like to be on a discussion board with her?  She is listed as "baileebug".  Also, do you have any suggestions to me for helping her through this difficult time.  Thanks so much for helping me out without even knowing you were doing it.

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2015

    Hi trickybar, welcome to Braestcancer.org.

    It is so nice from you to try to find somebody for your daughter to talk to. It must be tough to see her suffering for your illness. However, we let you know that our web site's Terms of Use state: "Registrants must be eighteen (18) years of age or older." We're sorry for that. If any member has a daughter or somebody that can help, you can always exchange information via Private Message (see left blue menu) and get in contact privately (please do not share personal information like telephone number or email address here in the boards).

    Best wishes for you and your daughter,

    The Mods

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  • DJJ
    DJJ Member Posts: 229
    edited April 2015

    Ladies, had my MRI yesterday (Monday). My nurse navigator called today and was making small talk. I told her to get to the point because if she was calling to tell me my MRI was clear that would have been the first thing she said. There is a small nodule next to the scar, it could be scar tissue but they have to be cautious. I have to have a mammogram and sonogram tomorrow morning. She told me to stay positive...HA!!!! Fingers crossed and a bottle of wine is my plan tonight!!! I'm so sick of this!!!!!

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited April 2015

    HI ladies, I haven't posted in a while. I still read your posts, though!

    DJJ, prayers for you tomorrow while you get poked, squeezed and prodded again. I schedule my appts in the morning, too....can't stand waiting all day! I hate this for you.

    Barbara, I hope you can enjoy your trip to the cabin. I watched the show too and bought the book. I haven't started reading it yet. Very enlightening program.

    My DD had her little girl on March 18th. I guess that is my last grandbaby...#6. So blessed!

    image

    Emery Rhyan


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  • RHGSR
    RHGSR Member Posts: 774
    edited April 2015

    Terri!! She is adorable and I think she resembles you.

    DJJ- positive thoughts. Testing tomorrow?

    I felt a lump in my radiated side. Went to oncologist today. He thinks just scar tissue but scheduled a mammogram for Friday. Then I had pain in my lower abdomen when I tinkled. Felt like a charley horse (sp?). Doc said I may have a slight muscle tear in my abdomen. Hmmmm.... Maybe too many sit-ups with my trainer yesterday?? Ugh!! I can't win for losing!!

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  • missy6758703
    missy6758703 Member Posts: 218
    edited April 2015

    Hi Everybody!!! Ok....am i the only one that gets just a little bit giddy when i come on here and it says there is an update!!! woohooo!

    Djj.....please my friend, keep us posted. I skipped my PET Scan this time...i was sick of this shit and just needed a break from it all.

    Keepthefaith.........Such a beautiful little baby!!! she is perfect!!! Congratulations to you and your family!

    Kim, good luck on the tests and school!

    Robin, your coloring is so fantastic!

    Barbara, have fun at the cabin! Our family has a beautiful lake home as well and its a place i go for peace. I watched part of that series on PBS...it was really good!

    Holli, how are you feeling???

    Shoulder pain....I am good as far as that goes but have had 2 shoulder surgeries in the past and also experienced a frozen shoulder and they are not fun! Lots of gentle stretching can really help.

    I made it into the Millionaires Club again this year at work. Had to work my butt off in March to make it but i did it! It's a group of the top 18 in sales in our company. We are heading to Puerto Vallarta for 5 nights on Sunday!! I'm bringing one of my best friends with me and we are going to have a blast!!! I have my final (I hope) surgery down at Mayo on May 29th. I have this feeling I have some MAJOR scar tissue on my cancer side where i had all the radiation. I just hope its a successful reconstruction. John was denied parole again. Ugh. In 3 years it will be completely over and she can't keep him in there any longer. I've been going to a psychologist.....seems to really have helped. I even look forward to going now. I was also instrumental in getting our cancer center here to start a support group for all of us that are going through treatments and living with the "what nows?" that we have all felt.

    Trickybarb....WELCOME!!!! :) you little stalker you!! We are so happy that you finally came out of hiding so that we can meet you! My daughter was a Senior in high school when i was diagnosed. I am a single parent and it's just me and her since my son is away at college. She really didn't want to talk about the C word much, but i never kept anything from her either. She was my rock and my caregiver and my errand runner and everything in between. I never wanted to burden her with anything though....i really wanted her to just be able to enjoy her Senior year of school and all that went with it...but in reality, she really had to grow up fast and she handled it with grace and courage and with the help of a great group of friends that supported her and me. Please message me if you would want my daughter to reach out to her. It's tough on them.

    We got a new puppy......his name is Mr. Bogart!! (Bogie for short!) seriously so in love with him!!!

    Hugs and lots of love to you all!

    Michelle

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  • RobinLK
    RobinLK Member Posts: 840
    edited April 2015

    Wow, busy board!! Love you ladies!

    Welcome Trickybarb!

    DJJ - in your pocket and in my prayers!

    Holli - ouch

    Michelle, thank you and so sorry parole was denied. I am glad that the counselor has been helpful!

    Do any of you ever not know what to say to which doctor? I am confused as to who is responsible for what. I will be adding an endocrinologist to the mix, to deal with my osteoporosis. My PCP feels the tamoxifen is contributing not protecting, as he feels I am still premenopausal. I failed oral meds (GERD), so he wants me to get IV meds. I am not really thrilled with that. My arm does not do IVs well at all. My port is out...and there were 5 attempts for an IV for that surgery. I guess it will be up to the new doctor to decide what is best.

    I have had pain in my right hip and lower back for awhile now. I will bring that up with my MO later this month. I don't know if it is tamoxifen SE, osteoporosis related or all from an old hip injury.

    My MRI is at the end of the month, which is yet another IV. UGH...wish my port had not been so quick to clog up. I would have kept it, but did not want weekly flushes.

    I also have non-alcoholic fatty liver. My PCP did not like my liver numbers and I had to have an ultrasound. Weight loss is basically what should correct it. I have to make sure that it is only 1 pound a week, more than that can cause further damage.

    I am so tired of all of this.

    On a better note, I am getting excited about Relay for Life. I pick up my shirt and some luminaria tomorrow night. This will be my first year walking as a survivor.


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  • kimie06
    kimie06 Member Posts: 215
    edited April 2015

    Trickybarb !! so happy you came around and decided to post, welcome!

    DJJ - WTF is happening, hope its all good.

    Sweet little baby !! I cant even deal with the bow on her head !! SO CUTE

    Finished BIO with a 91.99% yay... wrote my final exam just this past monday., now I wait

    I have nothing to report, which I guess is a good thing :)

    xo



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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited April 2015

    Holli, will be thinking of you on Friday and praying that all is good.

    Kimie, way to go!

    DJJ, results yet? keeping my fingers and toes crossed for you!

    Robin, I'll be going to an Endo also. Made a call to my MO today for a recommendation. I should've done it a while back, but just wasn't ready, I guess. Seems like it's never-ending. I'm on Tam, but haven't exp'd any painful SE's. I think it is a common SE though. I am post-meno. Hopefully, your MO and Endo can work together and get a good plan for you. Pics of RFL pls!

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  • jbokland
    jbokland Member Posts: 890
    edited April 2015

    Hello my sisters!

    Love to see all the chatter! Lots going on and lots to congratulate!

    I went to the gyno for an ultrasound of my ovaries...they are fine but the lining of my uterus has thickened slightly. She wants to do a biopsy ( good lord, I think bats may fly out when she unseals that tomb). My MO says I shouldn't be concerned, typical with Tamixifen.

    My daughter gives birth on 5/4. She said he is a Star Wars baby ( May the fourth be with you). I am excited to welcome baby Jaxon !

    Shoulder is improving with PT but it does kick up my Lymphedema a bit. (Sigh).


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  • trickybarb
    trickybarb Member Posts: 3
    edited April 2015

    Thanks to all of you for welcoming me on board.  Soon I will figure out how to post all of the Dx and chemo. information on the bottom of my posts. 

    I had a tram flap after my mastectomy in sept. 2013.  I seem to have a lot of scar tissue.  I am going to the oncologist next week and he is going to check this out.  Has anyone else had a tram flap and had problems with scar tissue.

    Robin, I agree with you on which doctor to see on which item.  I went back to my medical surgeon only once.  I figure all of the other doctors were checking everything that he checked and I certainly did not need any extra doctor appointments.  Maybe I was wrong there, who knows. 

    Hope everyone is getting out to enjoy the spring weather.

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  • DJJ
    DJJ Member Posts: 229
    edited April 2015

    Jbokland, Congrats on baby Jaxon! A spring baby! Sorry you have to do another biopsy...sigh. Enough is enough already.

    Trickybarb, it's hard to keep track of all these doctors. I found a gynecologist that specializes in menopause. At 43 I wasn't prepared for menopause and have a lot of questions. My MO said that I could make an appointment with her and we can discuss menopause, but as my previous gynecologist used to say "you don't have a tire guy check your transmission" :-) So I'm sticking with the menopause specialist.

    Robin, my MO gave me an order to get a bone scan because of menopause to get a baseline on my bones, but didn't tell me who to make it with? Another doctor to see. With physical therapy for my hip these co-pays are breaking me!

    I had a mammogram and sonogram yesterday. The strong cancer warrior I've been over the last 15 months has slipped away. I'm an emotional basket case. I didn't even try to hold in tears. I was terrifying all the women in the waiting room who were probably there for a routine mammo. I sat in the corner and just cried. I think I've cried for at least 24 hours now. I didn't even cry this much with diagnosis. I'm having a hard time staying optimistic. The radiologist has requested a biopsy. She tried to tell me not to worry that what she sees is not something that makes her immediately concerned but because of my breast cancer we need to be cautious. It's in the same breast as my cancer was but on the other side. WTF! That breast has been poisoned, sliced, diced and radiated. How could something appear so fast!!!!!!!!!!! Because it isn't clear in the Mammo or sonogram I have to have an MRI guided biopsy. Scheduled for Tuesday. I have to wait a week to see what this is....grrrrrrrrr I have a girls beach weekend in Ocean City this weekend. That will help get my mind off of it. That and the steady stream of alcohol we will be drinking

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  • RHGSR
    RHGSR Member Posts: 774
    edited April 2015

    DJJ- that sucks. I'm so sorry girl. You know what... It is OK to let that cancer fighting girl slip. We don't have to be strong all the time. I never can remember who said this (chime in whoever you may be) but it made a huge impression on me and I have held on to it over the past 18 months "tears make room for strength"

    Welcome Trickybarb. There are some awsome ladies here.

    Michelle- congrats on the puppy. I get giddy too when I get updates. I love all of you gals so much. I'm so sorry about the no parole :0(

    Kimie- WOO-HOO an "A ". Congrats girl. Super accomplishment!!

    Jbokland - I LOVE it - Star Wars baby. Congrats!

    Robin- I love you new pic. Your hair is so long. I struggle too with who to call with what. I have a fatty liver too.

    I got my compression sleeve and gauntlet. Wearing it for first time today. Did I tell y'all my MO told me I had small tears in my abdominal muscles from doing too many sit-ups? I mean....really? Why can't I get well? UGH. I exercise, eat right, start to lose weight and end up in hospital or damage tissue, or something. I don't normally curse but WTF!! Cancer you have had enough of me and my time!!

    Having diagnostic mammo tomorrow. Hysterectomy May 19. Leaving for Maui this weekend!!


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  • jbokland
    jbokland Member Posts: 890
    edited April 2015

    DJJ- hang in there girl. It may be much adou about nothing. Deep breath and inhale The bouquet of the fine wine you should be drinking.

    I've been wearing a compression sleeve, especially since starting PT. I bought several colors. I wish I could afford the LympheDiva brands!!

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  • Lisaj514
    Lisaj514 Member Posts: 719
    edited April 2015

    oh wow! Hi girls :-). Reading here everyday but not posting. But I too get excited when I see an update from my dec chemo gals. I'm on other threads also but this one is my fav. Good luck DJJ with results. I'm also a lumpectomy and still/also get worried that something else will show up. And Hollys right, you don't have to be superwoman all the time. You are just normal. Just let it all out when you need I it. anD that was me, my saying was "every tear you shed leaves room or strength toenter". My son actually it printed on a canvas with a pretty picture of a sunrise and rain.so cry away.

    Would like to post more but my old iPad gets slower and slower the more I type and I have to wait for the words to come out. Will try on desktop tomorrow mayb

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  • RobinLK
    RobinLK Member Posts: 840
    edited April 2015

    Jeanette, have you looked at Lymphedivas seconds? They are 1/2 price. That is how I purchase mine. It is less than anywhere else I could purchase.

    I am pretty sure I have lymphedema in one finger. My index on dominant hand. I don't know which doctor to ask for a referral back to PT. I also want to be wrong, this could ruin our plans to travel back to CT this year. I haven't seen my sister, brother or friends in 5.5 years. I was supposed to go back in Oct 2013, but we all know what happened then. I don't want this cancer shit ruining my plans again. This is why I have not let anyone know I maybe back.image

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  • Lisaj514
    Lisaj514 Member Posts: 719
    edited April 2015

    robin, same doc that originally referred you or even your pcp. Do your self MLD including the fingers and you prob need an open tip glove, one that includes the fingers. Is your hand swollen too? If so you should have been wearing a gauntlet in addition to the sleeve but now may need a glove with fingers. Do you wear a night sleeve? Or you prob need to learn to wrap at night. You may need a custom fit sleeve and glove. You should go to a certified MLD therapist and they will get you going again and refer for custom fit garments and show you how to wrap your arm and hand. You should be able to fly to visit fam and friends in conn. using compression even if you have to manually wraps. iNsurance will cover customs garments but they take a while to come in as they are made exactly to the measurements of your arm once the swellings is a at its best. Yes, You need to go visit. Wear your sleeve and get a glove or learn to wrap your hand and go. I am an OT and used to do some lymphedema treatment but am not certified. i would refer to a a custom fitter for my pts garments when they were ready once the swelling was down. And you have to do your MLD and exercises. A real pain but at least you can do something about it and control it. Get back to your PT re someone else that specializes. Ugh there goes my ipad

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  • RHGSR
    RHGSR Member Posts: 774
    edited April 2015

    my MO and RO both referred me to an occupational therapist who is certified in LE. She has been doing treatments on me and measured me for my custom sleeve. It was about $100 for custom sleeve and gauntlet.

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  • Lisaj514
    Lisaj514 Member Posts: 719
    edited April 2015

    like fate, this just came in my email today. I get emails from academy of lymphatic studies /Joe Luther and this article is on air travel with lymphedema. Holly,Glad you found a good OT who is MLD cert. 100.00 is good for a custom garment. Did you get a gauntlet too

    http://www.lymphedemablog.com/2015/04/17/lymphedema-and-airline-travel/

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  • RHGSR
    RHGSR Member Posts: 774
    edited April 2015

    yes it was you LISA!! I tell myself that a lot!!

    Had my mammo today.

    Here is an update from my blog...

    Mammogram oh mammogram...

    posted by Holli on Friday, April 17, 2015

    I didn't share this with too many of you. But I went for a mammogram today. It's kind of ironic since I don't really have breast tissue. But I felt a couple of lumps and needed to have them checked out.

    One lump is probably a cyst. The other is probably scar tissue. But there was a blip on the mammogram that was very small but they aren't sure what it is. More than likely scar tissue or a calcification. But I go for another mammogram in six months to be sure that nothing has changed. They want to follow it...

    So not the very best news...but certainly not the worst news either.

    I guess I was more nervous about it than I thought. My stomach has hurt all morning. My appointment was at 11:30. And I am just now leaving it being 2 o'clock. They had to do a mammogram and an ultrasound.

    It was hard not to have flashbacks from October 2013. Now I'm just exhausted. I guess all the adrenaline is leaving.

    So now I wait for my oncologist call me. To see if he wants to follow a different plan than what the radiologist recommended.

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  • RobinLK
    RobinLK Member Posts: 840
    edited April 2015

    Dropped in on my LE therapist. Yes, lymphadema. No need for treatment. Purchased glove for ZUMBA, may be the culprit. Have sleeves, never had need for gauntlet/glove prior to this. The glove felt better than the gauntlet. The fitter agreed that was the better choice since the swelling is almost all in my one finger. The only swelling other than the finger is in between that finger and the next. Had the fitter measure arm to check. Still good for the sleeves I have! Thank goodness.

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  • trickybarb
    trickybarb Member Posts: 3
    edited April 2015


    I go to my MO on Tuesday.  I have what I think is a lot of scar tissue in the breast with the tram flap.  Hopefully, that is all it is.  I have been crazy tired lately too.  Is anyone else having that?  Some days I feel good and then do too much and I am exhausted for a few days.  My bodies has the days and nights mixed up too.  I am up all night and sleep until the afternoon.  I sure do not want to add any other pills to what I already take to help me sleep.  I can do everything that I need to with this sleep schedule, so I will just go with it. 

    RHGSR - have a great time in Hawaii.  We were there 23 years ago in March for our honeymoon.  I hope you get to see the whales.  That is amazing.

    Have a great week ladies!

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