The Chemosabe March Cruise

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  • GrammyNancy
    GrammyNancy Member Posts: 666
    edited April 2008

    Marsha, good to hear from you and to hear that the se's are not as bad as AC/T.  Prayers that you continue to do well and that this bump in the road will soon be a memory.

    Returned from Costa Rica Saturday night and must say I had a wonderful time and never once thought about BC.  Saw lots of beautiful flowers, monkeys, lizards, frogs, birds and two volcanos.  Walking through the rain forests was a delight.  Went to both the east and west coasts, a little disappointing, black sands and not a single sea shell in sight.  Enjoyed sitting by the pool....two pools had bars in the middle of them....and yes Marsha I had a mojito for you.

    Everyone is in my thoughts and prayers everyday!

    Nancy

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2008

    Welcome home (a little late), Nancy. It sounds like you had a grand ole time. I'm so glad you got to go. Some girls at work and I are supposed to go on a cruise in August. I need to get an appointment to get my passport soon or I'll miss out!

    I saw my rad onc last week and I got him to release me! He said he usually followed his patients for several years, but since I was still under the care of my med onc and my bs, he would allow it. I felt kinda sad, cuz I really like him. However, I have too many doctors! Anyway, he just told me to watch for any changes in my skin on that side.

    Marsha, just want you to know that you're in my thoughts and prayers OFTEN. Please keep up updated with how you're doing. Are you working? I don't know how people work during chemo... I know I sure didn't!

    Next week I'll be seeing my cardiologist and in May my BS. I think she is gonna make me get a breast MRI.  Frown

    It ended up costing me a small forture to visit the lymphedema therapist for two weeks. Last year I had already met my yearly out of pocket, so I didn't realize!!! Anyway, I got a new sleeve and it's staying up nicely! It's a shame the LT recommended the one that wouldn't stay up last year.

    It's so annoying to go around pulling up your sleeve every five minutes and shoving down your boob. My parts are driving me crazy! I do have some hair now. It actually moves when I shake my head.  Laughing

    Hope everyone is good.... I miss you guys!

    Love to all,

    Miss S

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  • marshabel
    marshabel Member Posts: 142
    edited April 2008

    Hi, Nancy - Sounds like an incredible trip! That mojito was delicious, thanks for having it for me.

    Miss S - great news about eliminating one of the docs! One step at a time, right?  No, I'm not working either - wouldn't be worth a darn. I'm doing OK, it just seems like I've been on chemo forever - wait, I have! LOL, no, a lot of people have it a lot worse than me, I know.

    I would love to hear how some of our other cruisers are doing, so if you are lurking out there, please check in!

    Hugs to everyone,

    Marsha 

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  • maxgirl
    maxgirl Member Posts: 407
    edited April 2008

    MIA cruiser checking in --

    Marsha -- Thanks for the nudge -- I do tend to lurk. Embarassed

    How are you tolerating the chemo this time around?  I can imagine that it seems like you've always been in treatment -- no fun!

    MissS --  

    That's great you've finally got a sleeve that fits.  I know what you mean by tugging on your sleeve every five minutes.  I'm on my third one, and this last one fits better, but I still have days when I can't get it right.  Another problem I run into is that if I'm active, the sleeve keeps my arm under control, but all the swelling goes to my boob. Tongue out 

    I've just started with a new LT, and she's wonderful.  The only drawback is that she's an hour away.  Not fun spending the gas money on top of everything, but she's worth it.  

    Nancy -- Your vacation sounded absolutely wonderful.  To me, a good vacation keeps on giving with good memories.

    I do think of all of you often and also wonder about our fellow cruisers.

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  • GrammyNancy
    GrammyNancy Member Posts: 666
    edited April 2008

    Wow...found us on page 2....don't think we ever made it there before.

    MissS...happy to hear the new sleeve is working for you.  Prayers for your upcoming doctor visits.

    Marsha, how you doing....experiencing any se's?  My prayers continue for you.

    Maxgirl, good to hear from you.  So happy that you have found a Lt that is wonderful, sorry about the drive...maybe get some books on tape to listen to....it makes the time fly by.

    Prayers to all,

    Nancy

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  • marshabel
    marshabel Member Posts: 142
    edited April 2008

    Hello, Nancy and Maxgirl! So nice to hear from you!

    Nancy - sorry about your long drive, but if you have a therapist you like,you would probably drive even farther, I bet.  How often do you have to go? 

    Maxgirl - I've always been more of a lurker than a poster, too. 

    I just had the my fourth infusion of 12 yesterday. 7 more days of oral cytoxin before my next 2 weeks of rest. As for side effects, I can honestly say this is easier than the AC/T that I had last year, but making myself take the 4 pills of Cytoxin every day is hard!! Remember when we would ask the chemo nurse to slow down the cytoxin drip to avoid the excruciating headaches?  Well, I have to take the pills all together, and so I've been having 2 week long headaches.  OUCH!!!  Also, stomach distress as with the other drugs, and fatigue, but at least I don't have that killer taste of dead, rotting meat that I had with AC/T !!!  Hooray for small blessings!  I'm also pondering about whether I should get a port placed again. I just had it taken out in November, and the idea of another surgery is distressing to me. But yesterday, it took 3 people to get my IV in - my veins are deep and tend to blow as soon as they stick 'em.  I think I will at least try again on the next treatment, I still think I can stand  that discomfort more than another surgery. I'll see what my onc thinks, too.

       Anyway, SO nice to hear from you - let us know what's going on in your lives!

    Marsha

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  • rosebud1962
    rosebud1962 Member Posts: 196
    edited April 2008

    Gosh..I hated that port and I know it was helpful to me but I think that was the one thing I hated most.  I still think feel it at time when my seat belt lands just right on my scar.  Thanks goodness you still have the taste buds! That is a blessing!  Take care Marsha and know I'm praying for ya girl...Rosebud

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  • Keenie
    Keenie Member Posts: 258
    edited April 2008

    Hey Marsha,

    Glad to hear you're feeling sorta okay on the new tx plan. I'd have a port - my poor little veins are still shot, almost a year later. I had to have blood taken in February, and it took 3 pokes to find the vein. Ouch. Sorry to hear about the headaches. Are you getting some relief?



    Lots of prayers are heading your way. Keep us posted!

    Christine

    ;-)

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  • Keenie
    Keenie Member Posts: 258
    edited May 2008

    Is anybody out there?!

    Christine ;-)

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2008

    I'm lurking!!! Laughing

    Miss S

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  • Angelflight
    Angelflight Member Posts: 163
    edited May 2008

    Hi ladies,

    Marsha,

    So sorry to hear you'e on this cruise again, but glad to hear you're still coping.  Keep your chin up sweetie and know that we're here for you.

    I havn't been around in a while but have been extremely busy here getting on with life.  I have 4 friends who have been diagnosed with bc in the past few months.   I'm physically walking 2 of them through the process at present at their Dr. appts etc.  We've been waiting for what seems like eternity for one of my friends who's Kaiser to get her Echocardiogram, bloodwork, and her Her2 test results are still pending after being sent out for the 2nd time over a month ago.  My God I'm sure glad I don't have Kaiser anymore.

    Nancy,

    I'm going through almost the same thing right now.  Lymphodema on the left side, but believe it or not it's not in my arm.  It's just under the armpit area and it looks like I have a boob growing there.  We can't find a pt specialist anywhere near here as yet, but I'm still looking.  The Dr. wants to send me to City of Hope about 1 1/2 hours away but that just won't work out.  Too much time and gas, not to mention you have to go all the time.  I don't have a clue what they'll be able to do for it other than the massages since it can't be compressed because of the location.

    Angel

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  • pmarsh34
    pmarsh34 Member Posts: 108
    edited May 2008

    I too am lurking.  Busy trying to regain some normalcy.  Not sure what that means but still trying!  I was amazed at how difficult it was for me to end treatment.  I really somewhere in my head thought that I was going to just move on, go get a new job, and get back to life.  What was I thinking?  lol  What I have found is that life is so very different that it doesn't really resemble what it used to be except for the people that still surround me.  I have been spending my time taking new found friends back and forth to treatments, etc.  The first time I sat in the chemo suite on the 'visitor' chair, it was really wierd.  I figured out that I can't wash my hands there because the smell of the handsoap makes me nauseaus.  Talk about a lasting side effect!!!  I also am hosting a fundraiser at my church the end of this month.  We are doing a fellowship dinner and both a live and silent auction.  The entire church is involved.  The youth are going to serve dinner and auction themselves off.  The senior adults are going to make all the pink themed desserts.  It is called Prayers in Pink and everything including the food is going to be donated so the very first dollar goes to help someone who is fighting this icky disease.  If ya'all want to come to raleigh, it's May 28th from 5:30-8:30 pm @ www.mbcnc.org.  I would love to do a survivor recognition so anyone close by, come on!!!

    I don't come on the site very often anymore but I am reading the updates everyone sends.  I pray for all of us and our struggles and triumphs. 

    In Love,
    Patti
    Acts 20:24

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2008

    Angel,

    Good to hear from you! Sorry to hear so many of your friends have been dx'ed. It's good they have you to help them through. About the lymphedema in the trunk - they actually do compress that, too. My LT gave me this eggshell looking pad to stick in the side of my bra to compress it. She also actually wrapped my trunk. Crazy, huh?

    Patti,

    You've been busy! Prayers in Pink sounds like such a big project and a wonderful event for your church to host.  It's also very sweet of you to be taking people back and forth to txs, etc. BC has definitely left an impact on all of us. So good to hear from you.

    I'm busy with work, but don't get much of anything else done. I'm still watching over my Mom, who is getting to the end stages of Alzheimer's Disease. Cry

    Chemo has effected my joints and I can't stand for more than an hour without being very uncomfortable. My ankles start to sort of 'give out' after a while, it actually feels like I might fall. I can barely get up the front steps at my house. I have to use the rail to pull myself up. Fortunately, my job has changed to sitting in front of a computer all the time, so I'm able to do that! I started wearing 'crocs' all the time and it has aided a bit in the joint pain.

    Other than that, I'm doing pretty well and loving each sunny day! This is my favorite time of year.

    Thinking of you all and praying for you, too!

    Love yas,

    Miss S

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  • marshabel
    marshabel Member Posts: 142
    edited May 2008

    Hi, Angel and Patti! Angel, sorry to hear about your lymphedema and friends with BC. This is a horrible epidemic that someone needs to figure out soon!

    Patti, what a wonderful thing that you and your church are doing.

    Miss S , sorry about your joint pain. I'm beginning to have a bad ankle, too. Maybe I will give the crocs a try.  Also have a rib that has been hurting for a couple of days. Probably just a muscular thing, but you know that little voice inside my head is thinking something else.....Gotta tell my onc about it on Wednesday if it's not better.

    It was a beautiful day in Texas today!  

    Wishing you all well,

    Marsha 

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  • rosebud1962
    rosebud1962 Member Posts: 196
    edited May 2008

    Marsha..I've had the rib pain a few months ago.  After an x-ray, all was fine.  I realized that we will never be able to put things behind us cause there will be always a worry every pain. 

    Speaking of joint pain..I too have days I can't get going but I'm not sure if it's the Femara or I'm just getting older..LOL  This is what I've been doing..working on my car.  This is me with my first trophy ever.  This was at a High School show with my hearse.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2008

    Congrats, Rosebud! WTG! You look great!

    Marsha, I'll keep you and your rib in my prayers.

    Miss S

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  • marshabel
    marshabel Member Posts: 142
    edited May 2008

    Thanks, Rosebud and Miss S. Love the picture, and yeah, you really do look GREAT!

    Marsha 

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  • Angelflight
    Angelflight Member Posts: 163
    edited May 2008

    Hi again ladies.

    Rosebud,

    It's great to see a pic of you with hair again!  It let's us know we're finally on the road to recovery.

    What are you girls doing to promote your hair growth.  Mine is really short still after 11 months post treatment and a lot thinner because I think the Arimidex.  I am using Biotin but it doesn't seem to be helping.  Anything else out there you ladies are using?

    Miss S,

    The eggshell thing in the side of the bra probably would be a big help, but wrapping my trunk isn't an option.  It would have to go around my boob as well, NOT!  Hey I've only got one good one left and I'm not stiffeling it.......hehe

    Angel

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  • maxgirl
    maxgirl Member Posts: 407
    edited May 2008

    Hi, ladies --

    Marsha: I also went through a rib pain scare -- had a chest x-ray to make sure, but they diagnosed costochondritis, inflammation of the cartilege between the ribs, plus I have a spot on my back where a muscle attaches that was very sore.  Muscle relaxant made me feel so much better!  I hope yours is as B9 as well.

    Rosebud: You look great!  So healthy! 

    Angel: My hair growth is very uneven.  I've had it trimmed twice in the back so it won't stick out under my wig (yes, I'm still wearing it), but the top is shorter and thinner, with some very thin spots.   I haven't tried Biotin.

    I've got lymphedema under the arm, down my side, and in my boob.  My BS recommended a new LT who is just wonderful.  Unlike the other 2 I went to, this one is teaching me manual lymph drainage, which helps reduce symptoms in the middle of the day. 

    She also tapes my lumpectomy scar and under the boob and across the chest to guide the lymph to the other side of my chest.  She spends at least 45 minutes doing MLD and massage of the fibrotic areas.  I have to drive an hour to see her, so I see her only about once every 10 days, but with the taping and the MLD, I'm still seeing improvement.

    Patti: Your Prayers in Pink project sounds wonderful.  Strange, I'm going to be in the area on business, but a week before.  

    I know what you mean about not being able to get back to your life after chemo. I "knew" it would be different, but I was still disoriented for months afterward.  

    MissS: I'm so sorry about your mother -- what a hard year for you. ((hug))  Rotten luck with the joint pain as well. Thank goodness you can work on the computer.

    I had a nerve-wracking 6 to 8 weeks with what seemed to be a breast infection.  My BS and the LT said it was just inflammation as a byproduct of lymphedema, but my primary and the onc kept shaking their heads and looking serious. I had an US a month after my mammogram, and both saw thickening of the skin (which I thought I'd had since radiation).  I was on various antiobiotics for a month with some effect but it didn't entirely clear up, so I had a punch biopsy in the BS's office.  And that came out clear, and I was only about 10 years older. Tongue out

     Sorry for running on so long!

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  • playwriter
    playwriter Member Posts: 316
    edited May 2008

    hey guys, sorry i haven't checked in very often. things are good here, just trying to get end-of-year stuff done with the DDs. they are both on our neighborhood swim team as well, which has daily practices.

    i have a(nother) m'gram and a BSGI scheduled for june 4th, just to make sure nothing is growing. we tripneg girls have to be very diligent for the first 5 years post-dx, since if the cancer's coming back, that's the window.

    marsha i'll e/m u tmrw. really tired tonight, didn't sleep last night. love and blessings to everyone.  

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  • Keenie
    Keenie Member Posts: 258
    edited May 2008

    Rosebud, your hair is awesome! Love the blonde!



    Nice to hear from everyone. I love lurking here. . . I noticed our group was on Page 2 of the message boards and I thought I'd see who else was out there.



    Busy with the Kinders and Mother's Day presents. 27 potted plants coming home this week. Hope they don't end up in the bottom of the backpack and forgotten on Sunday. Sigh.



    Happy Mother's Day to all and blessings for everyone.

    Christine ;-)

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  • Angelflight
    Angelflight Member Posts: 163
    edited May 2008

    <img src="http://img.photobucket.com/albums/v712/Angelflight1/Snags/MDay/HMD.gif"&gt;

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  • Angelflight
    Angelflight Member Posts: 163
    edited May 2008
    " mce_src="" alt="Happy Mother's /day" border="" hspace="" vspace="" width="" height="" align="" />
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  • Angelflight
    Angelflight Member Posts: 163
    edited May 2008

        Happy Mother's Day Ladies

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  • GrammyNancy
    GrammyNancy Member Posts: 666
    edited May 2008

    Happy Mother's Day Everyone....you are such special ladies...I feel honored to have meet each of you!!!!!

    Marsha...glad that your treatment is causing few se's....hang in there girl...we're all praying for you and are always here for you.

    Rosebud..congratulations and you look wonderful.

    Angel...good to hear from you...sorry to hear about your friends...it always amazes me how prevalent this disease is.  I'm sure you have helped your friends so much, they are very fortunate to have you as a friend.

    MissS...sorry to hear about the joint pain....I can relate...these ole bones..I blame the herceptin and arimidex.

    Patti...Prayers in Pink sounds wonderful.

    Love to all you special ladies,

    Nancy

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  • playwriter
    playwriter Member Posts: 316
    edited May 2008

    hope y'all had a great mother's day!

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  • GrammyNancy
    GrammyNancy Member Posts: 666
    edited May 2008

    I found us on the second page and it was a little disappointing but then I realized that we must all be getting to our new normal and this is a good thing!  This time last year we were all in chemo (belch!!)..

    A good friend of mine has just been diagnosed with a soft tissue sarcoma in his arm.  He had his first chemo administered in the hospital over a three day period and ended up back in the hospital.  He was very nauseated during chemo.  When I was diagnosed I did tons of research and asked so many questions....he and his wife on the other hand are just leaving everything up to the doctors (VA hospital).  This concerns me, I know our research can cause concerns but it also gives us ammunition.  Do any of you have any suggestions?  I have given them tons of tips on getting through chemo but want to shake them so that they become knowledgable.

    Prayers for each you each day,

    Nancy

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  • Keenie
    Keenie Member Posts: 258
    edited May 2008

    Hi all,

    Hope everyone is feeling well. My DD and I just got back from a long weekend of shopping in the USA. Very fun and bargains to boot!



    Nancy, I feel so badly for your friend. Those chemo drugs are just so nasty and I hope the docs figure out how to make things better. I agree that we're all so blessed to be better than a year ago. I'm going for my second real hair cut tomorrow. I can't believe it.

    Lots of prayers for all!

    Christine ;-)

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  • Keenie
    Keenie Member Posts: 258
    edited May 2008

    Hi all,

    Hope everyone is feeling well. My DD and I just got back from a long weekend of shopping in the USA. Very fun and bargains to boot!



    Nancy, I feel so badly for your friend. Those chemo drugs are just so nasty and I hope the docs figure out how to make things better. I agree that we're all so blessed to be better than a year ago. I'm going for my second real hair cut tomorrow. I can't believe it.

    Lots of prayers for all!

    Christine ;-)

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  • Keenie
    Keenie Member Posts: 258
    edited May 2008

    Hi all,

    Hope everyone is feeling well. My DD and I just got back from a long weekend of shopping in the USA. Very fun and bargains to boot!



    Nancy, I feel so badly for your friend. Those chemo drugs are just so nasty and I hope the docs figure out how to make things better. I agree that we're all so blessed to be better than a year ago. I'm going for my second real hair cut tomorrow. I can't believe it.

    Lots of prayers for all!

    Christine ;-)

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