The Chemosabe March Cruise

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  • jacqniel
    jacqniel Member Posts: 720
    edited September 2007

    Miss S - so sorry for this huge bump in the road.  My EF was around 45% when they thought I had a heart attack, but it is now in the normal range (60+%).  My cardiologist thinks the fact that I had a lot of trauma to my body, as well as chemo, reduced the EF.  I pray that this will be true for you, too!

    Hugs, Jacque

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  • playwriter
    playwriter Member Posts: 316
    edited September 2007

    MissS! oh my goodness! prayers coming yr way from Houston!

    what's a LVEF?

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  • rosebud1962
    rosebud1962 Member Posts: 196
    edited September 2007

    I heart goes out to you Miss S.  I pray that everything will be alright for you after this is over.  We have endured so much, I hope this will be the last hump you have to get over....Rosebud

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  • Keenie
    Keenie Member Posts: 258
    edited September 2007

    Dear Miss S,

    Prayers coming your way from Canada, too!

    Thank you for the information about heart attacks. It's good to be reminded and be more aware.

    Love,

    Christine

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  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited September 2007

    MissS - oh my heavens! What a shock! Thank you for using your experience to remind us all that a heart attack, especially for women, doesn't always 'look like it does in the movies'. Prayers for healing your heart. . .

    Lisa

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  • 3boys4me
    3boys4me Member Posts: 319
    edited September 2007

    MissS - wow, what a scare.  I'll keep you in my thoughts.  And thank you for the reminder of the signs of a heart attack.

    I just saw my surgeon on Friday as a follow up to my mastectomy.  There was residual cancer in my breast and 6 of the 14 lymph nodes were cancerous.  I now know I made the right (only) decision to have the mastectomy and will know I'm doing all I can to increase my chances for the future.

    I'll be getting another check with the cardiologist sometime in the next week or two before starting chemo again in October.

    love to all,

    Lisa 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2007

    Thank you all so much for your replies. This has been a very scary time for me and it comforts me to know you guys care. You all mean so much to me.

    Teri, a LVEF is left ventricle ejection fraction.  Laughing

    3boys4me, I'm glad you were able to confirm that you made the right choices so far. It can be so hard to know what to do with all the decisions we have to make to get through BC. May your next leg of chemo greet you with the bare minimum of SE's!

    Love you all,

    Miss S

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  • playwriter
    playwriter Member Posts: 316
    edited September 2007

    Lisa,

    are you triple negative? if so, you may want to ask yr onc about caroplatin chemo instead of TAC.

    love and prayers

    terri

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  • GrammyNancy
    GrammyNancy Member Posts: 666
    edited September 2007

    {{{Miss S}}}...I'm just reading your news and want you to know that many prayers are being lifted up for you from Georgia also.  Thank you for your heart attack signs...we all need to know this and act.  Remember take one day at a time and live it to the fullest.

    Lisa with 3 boys, praise God for helping you make the right decision!

    I go to see my BS tomorrow....don't know what that will bring....I'm a little nervous....got my list of questions.

    Love to all,

    Nancy

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  • GrammyNancy
    GrammyNancy Member Posts: 666
    edited September 2007

    So ladies I'm really p*ssed and I need some advise.  Went to see my BS today and guess what.  A new doctor has joined the practice and that is who came in to see me. 

    So he says..."Hi, I'm Dr. A and I see you had your mastectomy in March" 

    I say "No," Feb 9th."

    He says "What treatment are you doing?"

    I say "Completed chemo, doing herceptin and arimidex now"

    He says " What about radiation"

    I say " No"

    He says " What about your lymph nodes?"

    I say "During surgery they took 7 and they came back neg but path report shows 1 with mirco mets"

    He says "let me look at your file....no they only took out 4"

    I say "no, my copy of the path report says 7"

    He says "Oh, I see that...yes there where 7"

    So my appt is 6 months after my surgery, I was sure that I would at least get a mamo....no...he says "we probably should schedule for a mamo"

    I say "Yes, thought that was one of the reasons for my appt today"

    He says "We'll schedule one for sometime in Dec"

    I say "Well since I had lobular and my understanding is that can mirror itself in the other breast are there other things we are going to do?  What about a breast MRI?"

     He says, "Yes you are correct about the mirroring.  We would only use the MRI if something shows up on the mamo or an ultrasound that looks suspicious."

    Well left there with an appt for a mamo in Dec and I was steaming.  Feel like my BS just threw me away to the new guy.  I really wanted to talk to him about the possibility of having the uni-boob removed to give me peace of mind.

    I think I'll spend tomorrow trying to find a new BS....do you think I'm being over senstive?

    Nancy

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  • jacqniel
    jacqniel Member Posts: 720
    edited September 2007

    No, your surgeon had no right to give you to another doctor without your permission.  I would be upset, too. 

    Also, I would push for the MRI.  If your breast surgeon won't order it, talk with your onc.  I had a huge tumor that didn't show on the mammo - and we knew right where it was! 

    Good luck with all the decisions you have to make!  Hugs, Jacque

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  • Keenie
    Keenie Member Posts: 258
    edited September 2007

    I think you should go for the MRI. In Canada, it's not very popular, so I'm insisting on an ultrasound with my mammo. I'll talk to my family doc abou the MRI and see if he can make it happen.



    You are very wise, Nancy, to know all about your case. We are our own best advocates. And I don't think you're being overly sensitive at all. This is your life that you're discussing! Let us know what happens.

    Christine

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2007

    Nancy,

    If you really like your BS you may want to call and speak with him and let him know how you feel. Then if that doesn't work, go looking for someone new. Sometimes we just have to be vocal enough to get our point across.

    I don't think you're being too sensitive at all! We BC survivors have been through a lot and we deserved to be treated gently and with sensitivity!

    Best of luck on whatever comes next.

    Miss S

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  • 3boys4me
    3boys4me Member Posts: 319
    edited September 2007

    Nancy,

    You need to be your own advocate - if you don't, who will?  It's certainly not okay for the office to switch doctors on you without your knowledge.  It sound like the doctor either didn't know what he was doing, or didn't take a few minutes to review your chart before coming in to see you - either way, it's not acceptable.  And insist on the MRI for your own peace of mind.

    I saw my BS today and still have my drain.  I have another appointment on Friday and hope it will be removed then.  I'm really getting rather tired of it.  I also want to to get my mastectomy bras and prosthesis and am hoping to do that Friday once the drain is removed.  Otherwise I'm just trying to educate myself as much as possible and preparing for chemo next month.   

    Lisa

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  • pmarsh34
    pmarsh34 Member Posts: 108
    edited September 2007

    Okay, so I go away for a few days and everyone comes in with something going on!

    MissS - I sure hope that your heart problems can be resolved quickly.  It truly sucks to add more to the mix.  It reminds me of the comment from the docs "so, you are healthy except for the cancer"  Like the cancer isn't bad enough!

    Nancy, I think I would call the docs office and tell them you want a phone call from your original bs.  I have had to see other docs during treatment because of vacations or whatever but I always knew ahead of time.  They weren't always as familiar with my case but they certainly knew more than the doc you got!!!  If you don't get some sort of satisfaction, then I would not blame you one bit for finding a new doc.  It should be an honor for them to treat us.  We are human beings, not just bodies.  Sometimes I think they forget that.

    On a technical note, how do I get my signature to automatically enter at the bottom of a post?  I used to be able to do it but now I can't find the option. 

    Patti

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  • pmarsh34
    pmarsh34 Member Posts: 108
    edited September 2007

    Lisa, (3boys) I do hope that you get your drainage tube out soon.  I had four to begin with and one of them just never quit draining.  I ended up having it in for 5 weeks.  It finally was removed so I could start chemo!  I would not wish for that for anyone.  Those drains truly suck!!!!!!

    Patti

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  • jacqniel
    jacqniel Member Posts: 720
    edited September 2007

    The drains DO suck!  Mine got pulled after 10 days because it was my BS's policy as he had a fear of infection - even though the drainage hadn't slowed down!  I even argued with him, because my mom had been 'extra juicy' when she had a mastecomy and had all kinds of problems.  Long story short - I had to go in three times a week to have fluid syringed off for about three or four months.  Now I have trunk lymphodema -NOT FUN!  So the moral is - as yucky as those drains are - don't rush them. 

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  • GrammyNancy
    GrammyNancy Member Posts: 666
    edited September 2007

    Thank you everyone for your support.....I've got a call into the BS and will see what he says.

    Lisa the drains do suck but as Jackie says it's best to put up with until your draining slows down.

    Nancy

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  • playwriter
    playwriter Member Posts: 316
    edited September 2007

    Nancy, I agree with the others -- talk to yr BS and see what he says, and refuse to see or be treated by the clueless guy.

    I had to see my rads onc today. Waited for a while and read magazines, then decided to read my chart. I found out that after a mass on my RIGHT (the non-cancerous one) breast had had a biopsy guided by ultrasound, due to radial scarring, the radiologist recommended a surgical biopsy. No one ever told me that, and a surgical biopsy was never performed.

    So I traipsed upstairs to see my surgeon, and he recommended another ultrasound to see what was up. He said he'd talk to the radiologist today.

    So I have an u/s scheduled for Monday.

    On top of that, some anonymous person left a comment on my blog, telling me my kids were overweight, my DH was autistic (?), and I always talk about food and never about family exercise in my blog, and s/he worked with a person who worked all the way through chemo, and that my priorities were all messed up.

    Very hurtful.

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  • 3boys4me
    3boys4me Member Posts: 319
    edited September 2007

    Hi fellow cruisers,

    Not many cruisers left, huh?  I'm hopeful about getting my drain out tomorrow.  I'm still getting about 100cc/day, but it's pretty clear.  I'm not sure what it means.  If the drain comes out, I'll be going prosthesis shopping.  I never in my wildest dreams ever thought I'd get excited about prosthesis shopping, but I amTongue out  And I just read not to wear underwires when going through radiation... so I guess I'll shop accordingly. 

    I also have another echocardiogram scheduled for tomorrow to check my heart before starting chemo again in a couple of weeks.

    hugs all around,

    Lisa

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2007

    terri, I cannot believe someone would have said such a thing to you! That is just rude beyond belief. Apparently someone is jealous or something....

    We need encouragement, not being stomped down!!

    *I* think you're wonderful and so are your kids and you're doing a great job!

    Lisa, here's hoping you find a beautiful boob! :D

    Miss S

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  • rosebud1962
    rosebud1962 Member Posts: 196
    edited September 2007

    I can't believe that someone would slam a person blog Terri.  Guess the person that said those things had nothing better to do then that.  Sorry to hear about thew right boobie..hope the test turns out good.

    Right now I've been taken off my Tamox that I'm taking.  I must be having some reaction to it, hives, bruising, etc.  So, I'm off of it for two weeks to see if things clear up.  Don't know what I'm going to take if I'm allergic to the stuff.  rosebud

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  • GrammyNancy
    GrammyNancy Member Posts: 666
    edited September 2007

    Wow Terri....how ugly was that!  I agree with Miss S....someone must be jealous.  Don't give it a second thought, people like that don't deserve our thoughts or energy!  Good luck Monday, you'll be in my prayers.

    Lisa, my surgeon wouldn't remove my drain until I was under 30 cc a day....don't rush it.  I echo, good luck with the boob shopping.

    Rosebud, sorry to hear about your reaction,  Hope that clears up and that you can get on some other med that will work for you.

    Miss S....how are you doing?  I know you where planning on returning to work....did you? 

    I got a call from my Breast Surgeon, he apologized.  Said he was doing a biopsy and got tied up and asked the other doc to see me.  Told him I felt like I was being kicked to the curb.  He told me in the future to tell the nurses that I would rather wait to see him.

    Hope everyone has a great weekend....we're off to see some grandsons play football...should be fun.

    Nancy

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  • dmknanny
    dmknanny Member Posts: 60
    edited September 2007

    Hey Sistas!

    It's been awhile, and I just spent the last hour catching up.  WOW!  First of all, I do NOT like this new format - I thought I'd lost you all at sea for awhile!  Now some SO's

    Nancy - first, my condolences to you, your daughter and your whole family on the loss of the baby.  My heart goes out to you all.  Next, I'm glad you got the issues with your BS cleared up.  Isn't it amazing how something can happen and get us all worked up and the person who caused it truly had no clue they were doing anything to upset anyone?  I know I also need to learn to speak up more if things aren't right........

    Terri - glad you PET was ok, and rads going well.  I am impressed with the workouts, too!  I hope you can get some answers (and action taken!) on the right breast biopsy, and that it will be fine.  And as far as someone slamming you and your family on your blog,James 3:16 says "For where envying and strife is, there is confusion and every evil work".  I think the author is a very confused person...

    Holly - so sorry about the death of you friend Bonnie.  I know how I felt when my son-in-law's father died of lung cancer in April - and you have to learn to appreciate everyday to the fullest and thank God you are still here.  I hope you mastitis clears up soon - ouch!

    Keenie - you are my hero!  2 kindergarten classes, and exercising 4x's a week??  Although I am sure that being surrounded by those beautiful little faces makes the day a pleasant one....

    MissS-I am so sorry for all that you have been going through.  Jeez......Just be thankful that they are finding these things out now and can work on correcting them so you don't end up with bigger problems down the road.  You're in my prayers

    Patti - Glad the hyster and oopho went well, and everything was B9!

    Lisa (3boys) I think we can all learn from your team and start making plans for our 25th reunion now!  I hear you on the port being more painful than the mast - and just hang in there with the drains - they reallyturn into a pain towards the end but the WILL come out! Good luck on your chemo in Oct and keep us posted

    LisaSDCA-I will be praying for you for your surgery on Tuesday.  I had a double mast with immediate TRAM flap recon in February and it was a 9 hour surgery - so make SURE your family is prepared for the wait.  I had the most wonderful night I can remember that night - the nurses had me surrounded by pillows - under my knees, arms, had the bed somewhat raised, I had my iPod on to some soothing spa music, and I felt like I ws just floating on a cloud.  Did not sleep - just was kinda suspended there.  Musta been some good drugs (not morphine, though - I swelled up with hives immediately when they gave me that!)  Thoughts will be with you 

    Jacque - loved the hair!  I am happy to hear that the new chemo regime they have you on has fewer se's.  You are a very strong thread that holds us all together, and I want to thank you for your continued support and reassurances to all of us...

    Angel - have you decided how to spend all that eBay money??  You GO, girl!  great job - although I'm sure it was a tremendous amount of work.  I hope you can get the sweling down soon....

    Rosebud- Hearse Show in Hell -  I LOVE it!  You'll have to send us a picture of you and your hearse!  I hope you have an appropriate costume....

    I am doing well.  Finished radiation end of August with no major SE's, and will have an oophorectomy Monday.  I had genetic testing done but will not get the results until 2 weeks or so, but decided to have the surgery now anyway, because I plan to FINALLY go back to work on 10/1.  Still not the career I want to pursue, but I need to get back to a regular routine.  Over the past 9 months I have NOT spring cleaned my house, cleaned out the storage areas or organized 30 years of pictures into albums - but I HAVE taken the time to take care of ME, spend precious time with my family, my friends and my Lord, and can agree with those who sy that there is a part of cancer that is a gift.  I have always been an optomist but I know have also learned to let go of the little things - they just aren't worth getting upset over.  And I can finally feel this way because my Dr put me on Cymbalta for the funk I was in and could not get out of - and the commercial is true, depression DOES hurt everyone!  Just got back from 10 days at the beach in an incredible rental home ($1.5 mil) with my husband, children, their spouses and my precious grandchildren for 7 days then 3 days with 5 girlfrinds.  In October we are going to Cancun for 4 days with 2 other couples, and we are also in the process of buying me a new car - a convertible of some sort, hopefully the sporty little Pontiac Solstice is insurance is not too high (I DID have a midlife crisis and I AM going to acknowledge it!) Life is good right now, and I thank GOd for his abundant blessings every day, and pray for the same for all of you!

    Thanks to all of you for your continued prayers and support the last 7 months 

    Diana 

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  • Keenie
    Keenie Member Posts: 258
    edited September 2007

    Hi everyone!

    First of all, Terri, what a horrible experience for you with your blog. Some people's children . . .



    Second, thanks Diana, for being your hero. I'm not feeling very heroic today - here's why!



    My hair is coming in very silvery (NOT grey - lol) and TWO of my Kinder Kids called me "Granny" this week. Not "mom", like they usually do when they forget where they are, but GRANNY!!! Now, I'm only 47, you guys, and I was thinking that I was looking like a Silver Fox. Like Jay Leno, but with slightly less chin. I'm now re-thinking the hair dye. Sheesh.



    Have a great weekend, everyone, and I'll be praying for good boob shopping, great surgeries, and excellent drain removals.



    Christine ;-)

    (who still can't find the cute icons with her Mac)

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  • jacqniel
    jacqniel Member Posts: 720
    edited September 2007

    Wow!  It is so good to hear you all checking in. 

    Terri - I am so  mad at whoever trashed you and your family.  What a drone.  I think you have handled your walk with cancer with grace and a flair - and I think your daughters are beauties.  It is so hard to understand people who are so clueless.  I wouldn't wish this on anyone - but let her (or him - but I think it sounds like a her) walk in your shoes for a week and see how SHE handles it!

    Lisa, good luck looking for your new boob.  I am heading out shopping for a new one myself, next week!

    Rosebud - sorry the tamoxifin is causing problems, but there are many txs to choose from, so I am sure your onc will find the perfect fit. 

    Nancy - I am so happy you heard from your surgeon!  Good for you for being proactive!

    Diana - way to go on the SOs!  Prayers for a problem free surgery on Monday. 

    Hey Granny! (just kidding, Christine).  That is too funny - at least to me.  Sorry.  People can tell me all they want that grey is 'in' but I just don't think I buy it.  Course, right now I would take grey, silver, white or even green!

    I have scans tomorrow to see  if my present tx is keeping my beasties at bay.  I appreciate prayers! 

    Hugs, Jacque

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  • playwriter
    playwriter Member Posts: 316
    edited September 2007

    Thanks, y'all, for yr support. i knew i could count on u for some encouragement! it just really made me sad. i thot i'd been doing a pretty good job of keeping everything together. anyway, just one person's opinion, doesn't make it true.

    Lisa -- get a nice perky boob.

    Holly -- how r u?

    Keenie -- i think u look beautiful. give it a couple of months b4 u color -- u don't want that precious hair to fall out again! i told my dd's K class that i used to have long hair like their teacher, and they looked at me disbelievingly. i took off my baseball cap, and said, "But I'm getting hair in. See?" one kid looks at me consideringly and then says, "You look better with the cap." which i thot was funny.

    patti -- how r u?

    lisa3boys -- I'm praying for grace with the drains.

    lisasdca  -- i'm praying for a skillful surgery and quick recovery for u.

    rose -- u are such a cool chick. love the hearse.

    diana - drive to houston! i want a ride in the new wheels!

    my u/s is tmrw night for my right breast. i can feel a something there at the 1 o'clock position...

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  • Keenie
    Keenie Member Posts: 258
    edited September 2007

    Terri,

    Was your original bc on the right side? I have such a lot of scar tissue on my breast and it's kind of thick and lumpy. Maybe you have the same? I'll pray for that to be the case. I go for my first u/s and mammo later in October. I see my family doc this week to update him on what the onc said. And I'll check about blood tests and tumor markers . . .

    We had snowflakes today mixed with rain. Must be fall!

    Christine

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  • pmarsh34
    pmarsh34 Member Posts: 108
    edited September 2007

    I got a chance to speak in front of the congregation of my church this morning.  I prayed and I read verses in the bible dealing with God's grace.  But what I found that really shaped the direction of what I wanted to say was the dictionary.  I looked up the word grace and read the definition:

    a. The freely given, unmerited favor and love of God. 
    b. The influence or spirit of God operating in humans to regenerate or strengthen them.  

    That was the definition in the dictionary but I got to thinking about how many different definitions there truly are.  I came up with a few definitions that God has put in my own personal dictionary.

    Receiving treatment for a life threatening disease despite the fact that I had no insurance and no money

    My surgeon telling me that she is honored to help me and I would never have to worry about getting a bill from her

    The surgery that removed the entire cancerous tumor in my breast

    Waking up from surgery - 4 different times

    My children

    Being able to humble myself enough to let a friend help me shower after surgery when I was unable to do it myself

    Friends taking care of all of the carpool duties to all of the girls' activities

    My boyfriend

    The chemotherapy that ensures that there are no cancer cells lurking in my body

    Participating in the Race for the Cure and experiencing the overwhelming support of other survivors and co-survivors

    My parents

    A garage sale to raise money for the girls and me because my treatment left me too sick to work

    Friends scrubbing my bathrooms, vacuuming my house, doing my laundry, cleaning my kitchen and mowing my lawn

    Phone calls of encouragement when I wasn't sure I could hold the phone because I was so tired and ill from chemo treatments

    Standing here breathing

    Having someone come to my front door and say, "I don't know you but God wanted me to give this to you."  And then hand me an envelope with money

    Prayers, lots and lots of prayers

    When I was looking really bad from chemo and standing in front of the mirror crying and saying how bad I looked only to have daughter tell me, "you just look like my mom"

    The nurse who gave me chemo calling me just to see how I am doing even though I am not her patient anymore

    Everyone in this church

    A benign ovarian tumor

    My youngest daughter choosing to follow Jesus and her baptism

    While sitting in a waiting room to receive yet another treatment, the wife of another patient walking away from me to cry because she didn't want to upset me - having the strength to pray with her when she returned - her thanking me and telling me that I was her angel that day

    Two dogs lying at my feet

    Being able to minister to others while being completely taken care of by others

    Being alive

    The list could be much longer but I'm giving a testimony, not a sermon.  All these things just reinforce the fact that God's grace is all around us and that He uses His earthly angels to help us.  We should experience His grace in a manner that sustains us and carries us through this life into the next one.  When I was first diagnosed with cancer, I would have wished for something different but now that I am on this walk, I wouldn't trade it for anything.  If it weren't for cancer, I wouldn't have been able to see so much of God's love and grace in others or in myself.  I am undeserving, as we all are, but God has chosen to love us all unconditionally and I am appreciative of that now more than ever before.  I can't say thank you enough to God and His angels here on earth.  

    I found a scripture verse that I think sums it all up for me. 

    Acts 20:24  However, I consider my life worth nothing to me, if only I may finish the race and complete the task the Lord Jesus has given me-the task of testifying to the gospel of God's grace.

    Patti

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  • GrammyNancy
    GrammyNancy Member Posts: 666
    edited September 2007

    Diana, so good to hear from you!  You sound like you have your priorities in order and you are enjoying life....A week at the beach with your family and then with friends sounds like heaven to me (I think God would be very happy with that also).  So happy that your doc was able to give you something to help with your funk.  You go girl with the convertible, several years ago my DH bought me a 1978 MGB convertible and restored it for me for my birthday (during my younger years my best girlfriend's  uncle had one and would let us borrow it and we would go out and act so cool).  I must say when I am out it in I love the wind and still feel somewhat like a youngin.  My prayers will be with you tomorrow as you move forward with your surgery tomorrow.  Let us know as soon as you can.

    Jacque and Terri, prayers for your scans tomorrow, I feel in my heart that you will have good news!  Keep us posted.

    Patti....how beautiful, how touching....what a testimony....you are truly living in God's grace.  This journey is not one that anyone would chose but it makes all of us better people.

    Love to my sisters,

    Nancy

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