SEPTEMBER 2008 rads group

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  • KAK
    KAK Member Posts: 1,679
    edited February 2009

    Jeez, Nancy, are you okay now??  I've really felt like crap this week, a bit nauseous even.  Yick.

    Good news is that my mammogram wasn't horrible and the radiologist looked at the images right away and said everything look A-okay.  No waiting!  I did ask the mammographer if she'd ask the radiologist to tell me right way if there was anything wrong.  Glad they did.  I took ibuprofen beforehand & it wasn't too bad and NO DO-OVERS!!!

    Then, after I'm all done, I get a call from my breast surgeon's secretary. I see the BS next week.  She said she was calling to tell me that the BS had wanted me to get all my post-op imaging done at her hospital and did I understood that.  What I recall is that she told me she "preferred" that I get them there.   Well, here's what I prefer.  The place where I have gotten my mamm's all along is 5 minutes from my house.  I work in the same hospital system.  I know most of these folks personally.  They're the ones that found the cancer in the first place and they have new digital equipment.  My BS, lovely as she is, is located 45-60 minutes from my house.  So, I told her secretary that I do work for a living, the mamm center I went to is 5 minutes from my home, they found the cancer in the first place, and I will be bringing copies of the actual images themselves to my surgeon next week so she can see them for herself.  And my implied-but-unstated closing statement was, "Put that in your pipe and smoke it."  Also, "Don't aggravate the cancer patients."  So, she says, "Oooo-kaaay.  I'll tell her."

    Hmmph.  I mean, really.

  • Makratz
    Makratz Member Posts: 12,678
    edited February 2009

    KAK and Nancy - Ugh on the concussions!  Be careful! Hopefully spring is just around the corner.

    KAK - I had a similiar thing happen with my rad onc wanting me to have my mam at his hosp and I wanted to have it where I always had it so like you, I won! 

    Have a nice Valentines Day!

  • Makratz
    Makratz Member Posts: 12,678
    edited February 2009

    Found this on facebook and wanted to share it with you all since we've al been there!  It's a poem about radiation therapy..........

    The 3 Million Dollar Tanning Bed
    By: Kathy Negro/ Breast Cancer Warrior

    I walk into the office with apprehension and fear
    The diagnosis of cancer is what we all share

    Radiation is needed for 6 weeks and 3 days
    Completed my chemo and now it's this phase

    The entire staff is filled with compassion and care
    They make you feel as if they've known you for years

    A mold is made from my chest to my head
    To prevent me from moving and being misread

    The next step seems to be exciting and new
    Not one, not two but many small tattoos

    The first day of treatment seems so surreal
    The patients you meet know how you feel

    It is time for radiation from the 3 million dollar tanning bed
    You get on the table and gently lay down your head

    You look up and the ceiling is filled with flowers galore
    Your heart starts to beat and you feel anxiety to the core

    The staff aligns you and each exits the room
    It feels like you're awaiting some impending doom

    I lie there alone and start to pray
    It is painless, this so called radiation ray

    Each visit gets easier and the staff becomes friends
    Fear, apprehension and anxiety all begin to end

    Yes, the skin can get red, blister and peel
    But doctors will take care of anything you feel

    These words are my gift of appreciation and gratitude
    For encouraging me to always have a positive attitude

    Each day I walk in, I smile as I have learned to cope
    This office has given me care, kindness, but most of all hope.

    From the front desk to the doctor to each one of you
    I am so grateful and proud of the job that you do

  • Wndalina
    Wndalina Member Posts: 98
    edited February 2009

    I am nervous about my first mamm - I was a DDD before and they were virtually painless, I had a reduction at the same time as surgery and now they are a C - I wonder how they will get in there - now I know why most people don't like them....  I don't go until May but I am fearful of it for sure!

    We will get through this - we have gotten through more...

  • Makratz
    Makratz Member Posts: 12,678
    edited February 2009

    Wndalina  - I laughed when I read your post!  I would give anything to have a C cup.  I am an A cup, or as my bra says "barely A" and just had my mamo on Tues.  If they can get my barely A's into the machine, you should have no problem!  Don't worry, you will be OK!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2009

    OH MY!! No more falling on the ice!! That is scary!

     When is your mam scheduled Wendy? Take something before you go - just incase. It might not even hurt.

    Happy Valentine's Day !! Smile

  • Wndalina
    Wndalina Member Posts: 98
    edited February 2009

    Someone suggest taking tylenol or motrin.  I have some stronger stuff left over from surgery - if hubby will drive me, I might take the stronger stuff.  I have to go in April - silly to stress now, but after having 7 years of no worries or pain, it does concern me - we all have our quirks right?  Its better than not going at all!  Have a great day all!

  • KAK
    KAK Member Posts: 1,679
    edited February 2009

    Just bumping.  I see my BS on Friday.  And she better not say one word about where I chose to get my mamm.  Still feeling crabby (and dizzy, sleepy, dopey, grumpy, achey and moody, my version of the Seven Dwarfs (dwarves?) from the concussion.

    Wendy, did you have your mamm yet?

  • mzmiller99
    mzmiller99 Member Posts: 894
    edited February 2009

     Kathi -     "Still feeling crabby (and dizzy, sleepy, dopey, grumpy, achey and moody, my version of the Seven Dwarfs (dwarves?)" Glad to see you feeling better...but I hope your dwarfs morph into Happy, Dreamy, Smiley, Flirty, Sexy, etc.!!

    Susan

  • KAK
    KAK Member Posts: 1,679
    edited February 2009

    I'm waiting, Susan, I'm waiting.  May be after this week, when I'll have gotten a few obligations off my plate.  Then, no doctors visits, no volunteer design/layout gigs ( I just resigned as editor of an art association newsletter I've been doing for a few years), no board meetings ( I also resigned from those), no extra stuff for a little while.  Just the job basically.  And my blog, which I'm enjoying.  Then maybe I can find my washing machine & do some laundry & maybe even make some of my own art.  Then we'll be able to set the clocks to Daylight Savings Time and it will be spring and we'll ALL be Happy, Dreamy, Smiley, Flirty, Sexy, etc.!  I look forward to it.

    Hugs,

    Kathi

  • mzmiller99
    mzmiller99 Member Posts: 894
    edited February 2009
    Kathi - good for you!  Letting go of obligations must make you feel so much lighter!!  Pretty soon it'll be spring somewhere!  I hope here!  That'll make me smile like nothin' else!!  Garden time!  Wink
  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2009

    Hi ladies,

    Just wanted to say HI ! Smile - you girls are funny! I'm ready for garden time too. This year I'm going to try and get into it. I'm ready for fresh veggies! Have a good week everyone. BIG HUGS!!

  • KAK
    KAK Member Posts: 1,679
    edited March 2009

    Hi, ladies.  Just checking in after a tough few weeks in the life of a person Living With Cancer, plus a few exhausting weeks at work.  I'm going to put a longer post on the Starting Hormone Therapy thread.  But I'll just say that I'm really tired & this has been a long winter in more ways than one.  We had a foot of snow at the beginning of the week, I got stuck somewhere, near some patient's house, pretty much every day this week as I drove around for work.  Now today it's near 50 degrees & everything is melting (YAY).  Gawd.  I know it could be worse & I could live in Michigan or Canada or something, but NO MORE SNOW, PLEASE!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2009

    Hi everyone,

    Did you hear tomorrow on Oprah there will be a lady sharing her story was about being told she had cancer - so she had a mast. Later she found out she didn't even have cancer ! How devastating is that!!!!!!!! Dr. Oz will be on the show to talk about what women can do so that doesn't happen to them .

  • Makratz
    Makratz Member Posts: 12,678
    edited March 2009

    Rose, Love the new avatar.  Roses are my favorite.  I will be planting some soon, well not soon enough.  I'm still waiting for the snow to melt.

    I'll try and check out Oprah tomorrow.  That's just awful!

  • KAK
    KAK Member Posts: 1,679
    edited March 2009

    Comrades, I'm bumping and updating.

    Since my negative mamm, I've had a new round of my de-lumped boob forming adhesions,or maybe I've just uncovered some deeper ones that were hiding under the ones I softened up before the mamm.  Despite stretching pretty regularly, my shoulder motion will tighten right up again.  I know this is rads again.  When they tell us the effects last up to two years, they're not kidding.

    However, I went to a seminar this past weekend for PTs and OTs about how to treat this, as well as lymphedema, cancer fatigue and other issues we experience.  It was really awesome.  I met another "sister" there who was also a PT, and she and I got to be the ones who got massaged, which was fab.  I learned a lot of things which I'm going to use to put a homecare team together at work.  I think a lot of us don't get adequate post-op discharge instructions and could use some visiting help when we get home, even from day surgery like mine.

    Also, I met a few therapists there that I can go to for my own scar tissue, etc.  I really have felt very cautious about going to a therapist because I wanted to find one that would really know what she was doing.  Even as a PT myself, I've received bad PT as well as good PT, and I sure haven't wanted anyone who was clueless putting her mitts on me, epspecially if she was clueless and didn't know she was clueless (worst kind of therapist!).

    How are you all with scar tissue, adhesions, nerve/nipple pain, etc.?

    The Effexor Extended Release, which I just switched to from the generic, has totally resolved my nausea issues.

    It was 60 degrees F and sunny where I was this weekend, which was, amazingly, New Hampshire!!

  • Makratz
    Makratz Member Posts: 12,678
    edited March 2009

    KAK - it was a beautiful weekend here too!  I can't wait for a repeat!

    Glad you had fun and learned a lot at your seminar.  Thanks for sharing.  I have scar tissue at the site of my lumpectomy, but nothing too bad. I hate it when I try and do a self examine and it all seems bumpy.  I guess it's suposed to. 

    The only pain I still have is from the SNB.  I have nerve damage from it.  My dh massages it and it really helps.  I do have to limit using my right arm during different activities because of pain.

    How's everyone else doing??

  • NancyD
    NancyD Member Posts: 3,562
    edited March 2009

    I've been seeing a PT at Rusk Institute (part of NYU) since January. The first one I had was very nice and got me started on some simple exercises to limber me up and evaluated me for lymphadema, but when she left at the end of January, a new PT took over.

    I have to say, the second one is better at working the muscle out. (The first one was too hesitant.) I still have to do exercises to keep it loose, but she did something at a single session that just seemed to "pop" (not literally) the pectoral out of it's tight phase. The tight band-around-my-chest feeling is less than half of what it used to be, and sometimes is actually gone.

    She is so pleased with my progress, I may be "discharged" in another week or two.

    But don't get me started on scar tissue. My bilat scars are adhered to my chest wall, but the surrounding skin (which was spared for future recon) is all puckered and full of stretch marks. Now it's the scars, rather than the muscles, that is causing the tightness, I think.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2009

    Hi Girls!!

    I thought I was the only one Makraz Surprised  I really have to watch when I carry things - my purse, groceries, books etc. I will get pain where my 2 nodes were removed and little of my breast. I know it will be a long time before I'm ever back to normal if at all. When I took my 6 month mamm. the surg. said I had scar tissue. That sure will make it harder to see any other lumps if they occur. I haven't even attempted massage. I agree - I don't want someone touching me that doesn't know what they are doing. Guess I should reseach how I can do it myself.

    It's a blessing NancyD that you found a great PT.

     Have a good week ! Cool Nice, cool and sunny today !

  • KAK
    KAK Member Posts: 1,679
    edited March 2009

    Just a bump and a hug to all.  I'm still getting used to the new version of effexor, which is extended release, so it doesn't cause nausea, but my system is not quite used to the "trickle through the day" dose.  So, I've had a few emotional crashes this week, just like I did when I was switching from zoloft to effextor when I started tamox.  Oooooh, this is not pleasant.  GROAN!

    Nancy, I feel the same way about scar tissue.  I don't even want to go into, but just know that I'm with you, girl.  When my surgical swelling first went all the way down and I got a real look at how deformed I now was, I was devastated.  I still feel a kind of love-hate thing for my surgeon.  Yeah, she saved my life, but now I'm mutilated.  Oh, I hate this flipping disease. 

    Plus, where did our sun go???  I need the sun back!!

  • Wndalina
    Wndalina Member Posts: 98
    edited March 2009

    Hello folks!  I actually had some troubles last week when my radiated breast started getting really warm and sore.  So sore i finally called the plastic surgeon, he referred me to radiologist.  Turns out its mastisis (sp?).  Using the steroid cream again a few times a day and it is better.  The breast was swollen and I couldn't wear a bra.  It was horrible.  I feel much better and wore a bra today.  Guess just when we think it is all over, it really never is huh?

    Oh well, life goes on (and it is all worth it).

    Cheers!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2009

    Hugs to you too KAK, This disease leave not only physical but emotionally scars as well, It's a "you don't know unless you go through it" hell.

    You right Wendy -- just when I think I'm getting over all of it - I get sore/pain - it will take years to heal - just MHO.

     Love and Prayers to all !!

  • jap
    jap Member Posts: 172
    edited March 2009

    Hi,

    Does anyone suffer from neuropathy in their feet (from chemo).  If so, what do you do about it?  I hear vit. B6 can be helpful but I don't know how much to take.

    Thanks,

    Jo Anne

  • KAK
    KAK Member Posts: 1,679
    edited March 2009

    Jo, neuropathy in the feet is unfortunately a common occurrence with chemo.  Talk to your docs.  PM if you don't find some help.  I'm a PT & there's a modality PT's can do that sometimes help, but not all PTs might have it at their disposal.

    Thanks for the hugs, Rose!  

    Wendy, I'm sorry you got mastitis!!  Yuck.  I've still had nipple pain & even armpit pain from time to time.  Comes & goes, but nothing as bad as mastitis.

  • jap
    jap Member Posts: 172
    edited March 2009

    Hi KAK,

    I have had trouble with PM to you so need to stay on the boards.

    I am being treated at MGH and have a great deal of trouble reaching a doctor except for regular appointments.  The PT department is excellent and I would like to have some treatment there for my feet if it would help.   Could you tell me more?

    I finished RAD in Jan. and only then realized how numb my feet were.  In late Feb.  I took Cipro for an ear infection and got a drug reaction which made the problem much worse.

    i am now taking vit.B6 but would like to do more to help my feet.

    I hear that for some people it goes away in about a year.

    Thanks,

    Jo Anne

  • KAK
    KAK Member Posts: 1,679
    edited March 2009

    Jo Anne, you can get a prescription from any doc for outpatient PT.  Try your regular PCP if you can't get the MGH docs.   Let me know how you make out.

    To PM me, just click on my screen name KAK, click on "send a private message," which is to the right of the screen, then type above the line & click Send when you're done.  I'll PM you so you can just reply.

    How is everybody?

  • KAK
    KAK Member Posts: 1,679
    edited April 2009

    Sisters, I've just found out that my recent negative mamm wasn't so negative after all.  There are more calcifications in that breast and I need to get more imaging done.

    More calcifications means I don't think I can keep going through all this.  So, a mast may be in my future.

    Shoot.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

                                 

    Yell          Yell

     KAK was this your 2nd mammo ? So you had a lumpectomy?

     If the calcifications in a group? They can just suck those out- right?

    I'm so sorry - I can only imagine how disappointing this news is.

    When are you going for more tests?

  • Makratz
    Makratz Member Posts: 12,678
    edited April 2009

    Kathi - Are you feeling any better?  I've been thinking about you.  Cals can be sucked right out as rose put it.  Hang in there.

  • KAK
    KAK Member Posts: 1,679
    edited April 2009

    Hi, girls, you are all such sweeties.  One of the reasons I feel better is because of all of you.   I do feel much better.   I needed that meltdown Thursday.   I also did a lot of reading yesterday about calc's and DCIS, and even tho' I won't know what's really going on for a while, I do know that if anything's positive, it's most likely just going to be more DCIS and I can get a simple mamm and be done with it.   It's kind of amazing what we all come to tho', isn't it, in  terms of accepting that cutting off one's entire breast is an acceptable thought.  Hmmmm.    But really, in that scenario, it would just be surgery, no chemo, no more rads, and I can deal with that.   Then I wouldn't really have to think of possible recurrence in that damn breast anymore.  Fine with me.

    I wrote a blog post about all this yesterday:   www.accidentalamazon.com

    Then, later, just to keep things in perspective, I heard the most tragic news about my breast surgeon, which is that her husband died on Wednesday.  He collapsed in a chairlift while the whole family was in Colorado this week to watch 2 of their 5 kids compete in a snowboarding competition.   Dear god in heaven.  He was an orthopedic surgeon, 48, healthy.   Awful.   Dr. Wiggins Dies Unexpectedly

    Hope all of you have a peaceful and safe Easter/Passover/Spring Sunday.

    XXOO

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