Western New York Area

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  • karen333
    karen333 Member Posts: 2,037
    edited March 2011

    Maureen, I had it on all day too.  It is hard to watch yet hard to turn off.  I hate to see that Breaking News logo on T.V., it usually is a great tragedy unfolding.  Watching inside that one office, it seemed like the quake lasted just a minute, it seemed like forever for that shaking of everything to stop.  That part of Japan will never be the same again, nor will the survivors ever be the same.  They will either have survivors' guilt or P.T.S.D..  Karen

  • YUMMY
    YUMMY Member Posts: 14
    edited March 2011

    Hi Ladies,

    I'm Justine from Cheektowaga and am 3 years 3 months out from my diagnosis.  Stop in here now and then and Just noticed the WNY post.  Want to wish all of you going through your 'own personal adventure with cancer' all the very best.

  • karen333
    karen333 Member Posts: 2,037
    edited March 2011

    Thank you Justine, I lived in Cheektowaga for a few years, now in Batavia .  I am a year and a half out from my lumpectomy and then rads.  This is a super nice group of women who support each other here and have plans to meet in the spring. We certainly would welcome you to our group if you'd like.  Karen

  • kindone
    kindone Member Posts: 435
    edited March 2011

    Good Evening Ladies, Welcome Justine hope you join us.

    Bevin,  Good news on Pet scan you will feel better when you take to the Lung specialist.

    I also have been watching TV all night, in Japan,  I pray for those poor people how terrible.  So much trouble in the world today, we better not complain about the snow.

    Going to hit the hay now, long day.  Good Night Ladies sweet dreams!

    going to hit

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited March 2011

    HI All, Welcome Justine, so nice of you to join the thread. 3 yrs!!! That's great, here's to having another 50+ healthy and cancer free. I have family in Cheektowaga as well.  Notice you had + nodes, chemo, rads too? Post often, great women on this thread, I'm so excited to meet all of you in the spring.

    Any ideas where we should go for our get together?  Or what to do?  Maybe a Sabres Stanley Cup playoff game? (LOL).

    I'm watching MSN news, the news of the nuclear power plants is devastating. Radiation leaks of that proportion is scary.  I pray for those people every day. The issues they face for recovery and survival is astronomical and that assumes the reactors stabilize. 

    Off to go with DH to sister's house, need to move her dryer to DD apt..  She bought a new one and gave her one for free, she's in school another year, why not?  I'll look for a cheap used washer and she can do laundry there.  Nice to be close to school, but sure miss her living at home.  When I got sick, she basically came home to help me, hoping things get back to normal and she focuses on school. 

    What's normal BTW? 

    Maureen

  • heymoose
    heymoose Member Posts: 682
    edited March 2011

    Hi Everyone,

    Well, I have not seen normal in over 3 years. What am I talking about, I'm not sure I ever saw normal.  But now I have my new normal.  After diagnosis, surgery and reconstruction, i started my new normal.  Not sure what that is but, I am not the same person as before BC.

    Welcome Justine, hope you will be joining us for the spring get together and keeping in touch on this thread.

    So sad about Japan.  The devastation is horrible.  I guess I can not complain about our winters, we really do not have it as bad as other parts of the world and the US.

    Have a nice evening.  (((((HUGS))))),

    Cheryl

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited March 2011

    Cheryl,  Not sure what new normal is anymore.  I loved my life pre-bc and want it back.  On the flip-side I quickly learned who my friends were, not necessarily who I thought I could count on.  Funny, some people I thought would just perform a "courtesy check" brought food, called all the time, offered so many things.  Some people didn't even bother to call or did the courtesy call, you know the type. A lesson in friendships.  I also let so many things go, things that bothered me just don't anymore. I just want this part of my life over and I know I'll get there.  So many great women in WNY!!!  That's a good thing that came out of cancer, new friends, more laid back, closer to my family, really good things.

    Maureen.

  • karen333
    karen333 Member Posts: 2,037
    edited March 2011

    Cheryl and Justine, welcome to the group, it's going to be a good sized group meeting in the spring.I too am looking for my new normal, it's been a medical centered and side effects  tolerated year and a half.  As so many women, not only Maureen , but others on other threads have found, you find your true friends and mourn the loss of some you thought were your good friends.  I have found I can be more real talking to women who have been in my place.  The old expression "walk a mile in my shoes"  is not a cliche but a trueism.  And your real life true friends and your cyber friends are always there for you.  Karen

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited March 2011

    Agreed Karen.  Hope you are well.  Having trouble sleeping tonight.  Maybe need to sleep with prince ativan (LOL).  Heard from BIL in KY, lost his family room furniture in the flood but all is okay.  Will need repair work on the lower level but hopefully nothing too costly.  I love KY, beautiful hills, his house is built into a hill, and lots of farms, they grow acres of soybeans.  They had a sunny day today in the 60's. I'll admit, I'm jealous. I'd be working in the yard, if it was a 60F day here.

    My house is too quiet tonight.  DS worked and off sleeping at a friend's house and DD worked and went to her apt. had too much homework. Yelled at me because I didn't tell her about the rads appt. on Monday. Chemo brain, thought I did. I can go by myself, she's such a sweetheart, wants to go with me so I'm not nervous. Wonder if my anxiety shows that much?  I'm the mom, seems backwards lately. Wonder if this is the start of the empty nest syndrome?  Another change, oh boy.

    The Sabres lost but I think NC lost too so we're still in the running.

    Back to watching the Japan catastrophe.  I pray for all the people in Japan, such a devastating time for them. And the nuclear plant would totally freak me out.

    Have a super night.

    Maureen

  • bevin
    bevin Member Posts: 519
    edited March 2011

    Hi everyone. Welcome Justine - glad you found our thread and congrats on 3 years out. Great great news!!

    Ok Cheryl- got to know why "heymoose" for your screen name. Very unique that's for sure , I am certain there's got to be a good story behind it.:)

    Betty- I'm sure you're right. I will feel better after I can ask a set of good questions to the Pulmonary guy. hey- mu Husband grew up in So.Buffalo - aren't you all related out there :) , betting you know the family. Will have to PM you as I don't like my personal family name on the boards!!

    Aww Maureen - empty nest. can't even imagine that stage in my life given my daughter is so young. Gosh the thought of it makes me sad. I'm guessing you get used to it. did everything go ok w the appliance move?

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited March 2011

    Hi All,  Move went well.  Boys did all the work.  Empty nest will be hard, too accustomed to houseful even when DH is out of town.  At one point, I'd cook breakfast based on the number of sneakers in the front foyer (LOL).

    Sabres won, poor Rick Martin.  Had the opportunity to meet him years ago, handsome, polite, not arrogant at all, RIP Rico!! Hope the Sabres get into the playoffs just for him.  Made me tear up they wore 7's on their helmets and raised their sticks to his banner.  Yes I watched the game and they still won, my son couldn't believe it.  Didn't watch all of the game but did watch some of it.  Much too young to have heart trouble. 

    Went to rads appt. today, Of course DD went with me, she couldn't go into the tx room, so she waited in the wating room doing her homework.  1 hr. appt. Arrived and checked-in, then put on a gown. They put me on the table, took some measurements, then put boards and a form under me while on the table.  Arm on the bc side needs to be up over your head grasping a pole behind you. While you are grasping the pole, you turn your face to the opposite side preventing a sore throat.  After forms are fitted, they are labeled with your name and used every treatment.  Then I had to walk down to CAT scan, they bring all the forms and boards with the measurments and perform a CAT scan to confirm the right area is being treated.  Once the CAT scan was complete, they did the tatoos.  They are permanent. Initially they look quite large, size of 1/8 of an inch.  This is just the dye, not the tatoo which calmed my thoughts.  They do the tatoos,  blood work is more painful than the tattoo, literally took 2 seconds to do the marks, ran through the CAT scan one more time and then finished. The final tatoo is about the size of the period at the end of this sentence. Get dressed and went to car.  I timed from start to finish. Whole procedure took 55 minutes, from arrival to departure out of the building.  I start next Monday with a dry run repeat start to finish, then everyday for 33 days. I see the RO weekly and have an x-ray every other week to check progress (reason provided when I asked reason for the x-ray.)

    Feels really funny not going to chemo today.

  • starbeauty
    starbeauty Member Posts: 106
    edited March 2011

    Hi All... just found your thread too.  Glad to know I am not alone out here with BC treatments and the snow.  :)  I'm done with the chemo and rads - and now just taking the Tam and seeing the onc every three months - hoping to go every 6 months after this next visit.  Having an MRI on the remaining breast end of the month - just a tad of anxiety - I always think it is going to start all over again with every scan I have. 

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited March 2011

    Hi starbeauty, welcome to the site.  You are never alone here, can't promise the snow will improve though (LOL).  Glad you're on the road to recovery.  Understand the scan anxiety, Karen on the site is going this week too!!  Hugs to you when you go for scan, we're holding your hand, right there with you.  Today, when I went for the rad simulation, I kept thinking of all the great women on this thread are a phone call away, nice thought. Understand, I have that thought every single day of recurrence.  What if it comes back.  Everyone tells you well don't think about it. My standard response:  Don't think of the color red, whatever you do don't think of the color red!!  They look at me like I'm crazy and then I ask them what they are thinking (always the color red), they usually have this look of revelation, getting how a bc survivor feels.  Yes, we try not to think about bc or recurrence but it's nearly impossible sometimes.  We'll deal with it IF and when we have to but will always be in the back of your mind.  

    Keep posting, great ladies on the thread!!

    Mauren

  • karen333
    karen333 Member Posts: 2,037
    edited March 2011

    Hi starbeauty, welcome to our group, it is a fine bunch of women, ready to support in any way.  I have had the strangest day, I thought I had a scan today, I didn't have it on my calender which isn't like me, but the receptionist called last week to remind me of it. so I went into scanxiety.  My DD thought it wasn't until after my mammo, next month, which I had marked on my calender.  My daughter got the respiratory infection we have been passing aroud the house, so I called to cancel the appt. this morning since she is my driver in Rochester, I can find anything in Buffalo, but not in Rochester.  I canceled the appt. - an hour later my nurse called me to tell me that my appt. was not till after my mammo., the receptionist was mistaken.  It's a good thing I cancelled since DD was sick.  I can get this confused all by myself, don't really need help. It must be the time for viruses since Wamart was running low on all the OTC drugs I was looking for.  Hurry up spring - next week looks nice, I see 40's and 50's  Yippee, maybe it will kill all the bacteria and viruses

  • YUMMY
    YUMMY Member Posts: 14
    edited March 2011

    Maureen,

    Live consciously, but don't let possible recurrance consume you.  If it does happen, you now know the routine and you know you can do this.  Maybe I'm jsut fooling myself, but I believe I've HAD my experience with cancer, and now I'm going to live to be an old blue-haired lady and die on that bus to Atlantic City!  Maybe it's becuse I work in a hospital but there are so many other things that can happen to us healthwise, if we worry about this thing, we might as well worry that a car will hit us, lightenting will hit us, we'll fall down the stairs with the laundry basket and crack our head open... heck, we'll drive down a different street and a tree branch will fall on our car killing us.  You CAN'T live worried about how you may die because that's not livivng.

    I have become more selfish, I am sacrificing some other things to find the $ and make the time to take vacations with my husband, to see diffent places, even if they're just half a day away, but I've never been there.  I'm not waiting "until we retire" because now I know there is no guarentee we'll see if.  So last year for my birthday, we took a long week-end and went to Alex Bay, Ogdensburg and Montreal.. all places I've never been, Cancun for our anniversary (and our Christmas present to ourselves ) and looking for another long week-end for this years BD.  So, while I don't worry about recurrance, I'm living like there may not be a tomorrow. Smile

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited March 2011

    YUMMY,  I like your thought proess.  Makes sense to me, we should all follow suit.

    Karen,  They messed up the appt?  Unbelievable. Hope she apologized.

    Just watching the Rick Martin legacy.  Such a young man.

    My DD was watching the sports tribute today and asked me " Why aren't they wearing helmets while they're playing hockey, are they crazy?"  It's funny how our kids don't remember bicycles, hockey without the helmets etc....I think that's a good thing.  Didn't tell her I can remember people riding in a car without seatbelts, etc...  I think the kids wear helmets for soccer now too?

    Maureen

  • karen333
    karen333 Member Posts: 2,037
    edited March 2011

    Maureen, I just said that's OK.  I think sometimes I am a doormat and don't let my anger or displeasure show.  Glad your session with the RO went well and it was such a short period of time.  What time of day is your appt. so I can send good thoughts your way.  I remember no helmets in hockey and on motorcycles.  In Pa. you still don't have to wear a helmet when riding a motorcycle,  pure idiocy.  Hugs to you Karen

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited March 2011

    Morning appt.  8ish.  There are two people ahead of me with 15min. between each one.  No helmets on a motorcycle?  That's a special kind of stupid. Just watching the bachelor.  RO sent me to a lymphedema specialist going to this week.  My arm looks fine to me, did anyone who rec'd radiation on the thread have issues with lymphedema from rads?  Have a great night ladies. Sun is suppose to shine tomorrow too!!!  Great day.

    Maureen

  • YUMMY
    YUMMY Member Posts: 14
    edited March 2011

    Maureen,

    Not sure if actually WAS lymphedema, or in hindsight, I just sprained my forearm with wii boxing, but 2 months after radiation had what I thought was lymphedema in my arm on the radiated side.  nothing too significant, but i was concerned and saw Tara (reall sweetheart) at WNY Breast Health on Sheridan. (at the time I think she and someone at Roswell were the only lymphedema therapists in town) I never needed a compression garment, but she gave me some exercises and worked with me in the office and taught me how to wrap my arm as I was going to be flying to Florida and was worried with the lower cabin pressure that it would blow up.  No problems, the swelling subsided after a few months and no problems with the arm blowing up since.  BUT, I do have a lot of tightess on that side still, and have to work to keep it stretched and lose and radiation can cause inflammation, so it doesn't hurt to see someone who can tell you what to look for and maybe advise on what to start doing if you have some symptoms.   And the FUN just continues, doesn't it?  Remember, as in all things, this too shall pass.  Here's to the warmer weather!

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited March 2011

    Thanks YUMMY,  Just curious, like Karen, what's the story behind the log in names?  I'm creative handicapped and often wonder how people think of these sign on names?  Onc sent me to Ortho place on Main St. in Wmsvl.  I will ask if they're lymph specialists, thanks for the great suggestion. The only information I have on lymphedema is the exercises that were given to me right after lumpectomy.  I do those every day.  When I'm on the computer sometimes, my arm gets stiff, but think it's from too much typing/talking with my bc friends  (LOL)   Agreed, this too shall pass.  I'm starting to see buds on my rhododendrons so there is hope. 

    Bevin,  good luck sending HUGE HUGS TO YOU!!!!!!!!!!!!!!

    Sending hello to all WNY friends, Karen, EllieD, D4hope, Cheryl, YUMMY, kmbj, Bevin they are growing!!! Let me know if you haven't posted in a while and I missed someone. Would love to hear how you're doing.

    Maureen

  • kindone
    kindone Member Posts: 435
    edited March 2011

    Hay what about me. lol

    Hello Ladies, I know its late but I worked a double today and just got home.  I was very sadden by Rick Martins death.  I had my picture taken with him about 3 yrs ago at a Sabers game. Nice man.

    Maureen, did you see that Linda Pellegreno just announce she had breast cancer and had a double mast. and she went to Dr. Bauer. She will be getting chemo in the spring but they didn't say who her onc is.

    Thinking about you girls and good thoughts.

    Good night.

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited March 2011

    OMG,  I can't believe I didn't type your screen name. Embarassed Please accept my sincerest apologies.  I'm so glad your humor reflects your screen name. Laughing  You worked a double?  You must be exhausted.  Doubles are a dual edged sword, good for the money, tough to do.  Hope you can rest today. 

    I saw a blurb on Channel 7 news about LP.  My prayers are with her and family during this difficult time. I hope she finds us on this thread.  Many great women with good, solid advice.  I like her choice of surgeons as my experience was very positive with him and his support systems.  Thinking she'll choose the same onc. as they seem to work as a highly functioning team.  Didn't hear what stage etc.... however numbers don't matter, we're all in this together praying for a cure. 

    Off to lymph specialist today, then work, then blah, blah.....busy day.

    Bevin, (((((((((((hugs)))))))))))) for today.  We're praying for you.  PM or call.

    Maureen

  • YUMMY
    YUMMY Member Posts: 14
    edited March 2011

    Maureen, et al...

    My login is for my DH. her refers to me as 'my yummy bunny', 'my yum'.  he actually surprised me with a huge "yum" ornament on the christmas tree this year.  since it's taking forever to get from my cell phone to my work email, maybe i'll send it later... but that's why i am who i am.:)

    also, it's very early, but if anyone is interested in doing the 'strides' walk this October, we started a team last year, "Whatabunchaboobs", had about 20 walkers and are planning on doing it again this year.  Even as out of shape as I am, it's an easy 3 miles and you can do it in about an hour.  Something to think about

    Happy Tuesday, all!

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited March 2011

    I'm in if I can get my butt off the couch (LOL).  I think I'll be healthy by then and maybe even HAIR Wink

    Maureen

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited March 2011

    Went to see LE specialist.  Liked her, really nice lady in Clarence.  Said everything looks good but wants me to get sleeve for flying. Have to for work, infrequent, not my favorite task but required so the sleeve I will get oh and hand garment?  not sure what she meant by that.  Will have me do routine that I've been doing since they took the drains out.  BS provided a PT the day after surgery, she showed me the drill and I do them religiously every day.   I will see her LE specialist after radiation is complete.  Said rads can sometimes trigger LE.  Really need to work now, don't feel like it though,  nice day, sun shining, my hair is on (LOL)  maybe call  sister to go out to dinner or invite her over for dinner or sit with the cat and open the window. 

  • karen333
    karen333 Member Posts: 2,037
    edited March 2011

    Yummy and Maureen, it's just a beautiful day today, and all week is supposed to be nice, just a little rain tomorrow.  Oh - it just might be spring.  Got the windows open to freshen the house. My cousin wears a sleeve for flying Maureen, not the gauntlet though, and like you only when she flys.  Has never had trouble with it.  Karen

  • starbeauty
    starbeauty Member Posts: 106
    edited March 2011

    Thank you Karen and Maureen for the warm welcome.

    Maureen - I have LE that I am fighting off most days - who knows whether it was the MX and removal of all my nodes or the rads that went all the way up my neck and down to my stomach and over to my sternum that "did it", but something did.  At the worst the upper arm is about 1.5 inches larger than the other upper arm.  I manage most days to keep it under .5 inches, but I can feel it - sometimes it migrates onto my back.  I wear a sleeve when I exercise.  Just one more fun part of the BC surprise...  Esther 

  • EllieD
    EllieD Member Posts: 14
    edited March 2011

    Hello all you wonderful WNY women.  I'm back from Florida and trying to get back into the working grove.  So glad to read up about you all and to know you are well.  Maureen, hope the LE is bearable.  Sad to hear about Linda Pellegrino.  BC sucks, doesn't it?

  • horse-n-around
    horse-n-around Member Posts: 8
    edited March 2011

    Hi everyone,

    I am just a smidge south east of Rochester!  Not to far away - we occasionally visit your neighborhood going to the Sabres & Bills game :)

  • starbeauty
    starbeauty Member Posts: 106
    edited March 2011

    horse-n-around

    Then you probably drive by us on the Thurway...  :)