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  • sweatyspice
    sweatyspice Member Posts: 922
    edited February 2011

    I like the Turning Leaf / Cloisters idea.

    Will be unemployed after Weds, never looked forward to being laid off so much!! 

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  • Survivorwoman
    Survivorwoman Member Posts: 620
    edited February 2011

    Flash -- thank you for your support and letting me know that it will get better. That it is a gradual thing. I really hope so, as I am often very hard on myself. I know I shouldn't be, but that is the way I am. I am glad that you reminded me to just be kind to me. I often forget it.

    Sweatyspice -you don't mind being unemployed? I would be so worried.

    I am so glad we are meeting again. Where is that place you are talking about? Turning Leaf?

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  • Kitchenwitch
    Kitchenwitch Member Posts: 374
    edited March 2011

    Sweaty, it seems like if you;'re working I'm not. And since I am working now... I guess it's your turn for a lil time off.

    The Cloisters sounds great to me too! Never been to Turning Leaf. 

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  • Survivorwoman
    Survivorwoman Member Posts: 620
    edited March 2011

    Ladies-- I am having a blood transfusion on Wednesday. My red blood count came back very low and the doctor suggested that I do a transfusion. I am bummed out a bit, but this explains why I am feeling so lethargic, having heart palpitations and the shortness of breath. I hope to be better by the time we meet.

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  • flash
    flash Member Posts: 1,685
    edited March 2011

    survivor- transfusions do make you feel much better.

    sweaty- so when do we do lunch to celebrate/commiserate your freedom from the workplace?

    I love the cloisters, just have no idea of where the turning leaf is.  Cookie???? can you give more info?  Is that what they call the refreshment area at the cloisters inside? (it's never been open when i've been there.)

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited March 2011

    It's actually New Leaf Restaurant, in Fort Tryon Park. 

    http://www.newleafrestaurant.com/

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  • flash
    flash Member Posts: 1,685
    edited March 2011

    ty sweaty

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  • Survivorwoman
    Survivorwoman Member Posts: 620
    edited March 2011
    Hi Ladies -- I had an overnight blood transfusion. I came home from the hospital yesterday. I will tell you all about my ordeal the next time I see you all. But thankfully, I feel a bit better. Thank you Flash for your encouragment. At least physically I feel a bit better. I still have some emotional issues, but trying very hard to hang in there.
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  • citykitty
    citykitty Member Posts: 244
    edited March 2011

    Hi all -- Hope you all are doing well.  Survivorwoman, I hope you're feeling better after your transfusion!

    I'm plugging along.  Celebrated my big five-oh birthday last Wednesday with a 10-mile run, a matinee of "Billy Elliott," and a tasting menu with wine pairings at Babbo (one of the three times I've done alcohol on chemo!).  Tomorrow I have chemo #8 of 10.  By the end of March I'll be done with Taxol+Herceptin, and then it's Herceptin only every three weeks for the rest of the year.  I'm planning my exchange surgery for April 22 (if hospital and insurance finish doing their dance in time to get it scheduled).  I can't wait to recover from that (4-6 weeks) so I can get on with the business of marathon training!  I have two big races planned for the fall.  My biggest challenge will probably be not bc but my left knee.

    Looking forward to seeing you all again soon!

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2011

    hey all...I am all bundled in bandages for the arm....bleh!

    2nd saturday in April...the 9th or sunday 10th?

    I love that restaurant.

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  • Survivorwoman
    Survivorwoman Member Posts: 620
    edited March 2011

    CityKitty- Wow! You are almost done with chemo: 2 more to go, right? Keep on going! Keep on fighting! You will soon feel like Rocky in the movie when he reaches the top of the stairs.

    Cookiegal- what is going on with the bandages? Is it serious?

    I am a bit stronger and less run down. The blood transfusion helped. Since then I have been eating meat or liver daily to keep generating iron in my blood. I was told to do so.

    I can't wait to see you all. I like the 9th of April, but will go when ever is the best for others and where ever you all want to go. I am flexible.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2011

    The bandages are for my darn lymphedema. I actually am not so impressed with how they worked.

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  • Survivorwoman
    Survivorwoman Member Posts: 620
    edited March 2011

    Cookiegal: Sorry, I should have known that you were talking about lymphedema bandages. I hope I wasn't insensitive, it is not like me. Sorry. I thought that for the arm we get the sleeve. I just googled it and saw that there are also wrap-around bandages, too. I did not realize that.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2011

    No sweat...some people bandage at night, during active treatment they are used around the clock.

    Honestly after 24 hours I was so not impressed, and went back to the sleeve and glove.

    For what it's worth...I was always told not to wear a sleeve if you did not have lymphedema yet. Some people believe in preventative sleeve wearing. If you were going to get a preventative sleeve, I really like the one I have, it is 15-21 compression, so it is less compression than a normal sleeve, but it has little ridges to help stimulate the flow.

    I have fount the fabric really effective for my breast LE, and I think it is helping with the arm.

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  • citykitty
    citykitty Member Posts: 244
    edited March 2011

    Sorry, I can't make that weekend in April.  We're scheduled to go down to Atlanta for a memorial service -- although I'm nervous about committing to plane tickets at this point because I have no idea how I'll be feeling two weeks after my last chemo.  I might be fine, but I just don't know!

    Cookiegal, so sorry about the arm, yuck! 

    Survivorwoman, so glad to hear you're doing better.  Yes, 2 more chemo's to go, although I don't expect to feel like Rocky, haha!  I don't feel like I'm fighting, just showing up to sit in a chair for a couple of hours every week -- which, frankly, I will kind of miss when it's over.  It's much less stressful than work!  OTOH, I will not miss the SEs.  The peripheral neuropathy has been mounting the past couple of weeks, and so has the fatigue.  I'm home from work for the third day in a row today, which seems just insane, but it's just the way it is.  Only a few more weeks, though!

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  • Survivorwoman
    Survivorwoman Member Posts: 620
    edited March 2011

    Wow! Only a few more weeks CityKitty!!! It will go by real fast. But may I tell you something? Please keep eating meat!!! I am telling this b/c I did not listen to the chemo nurses while I was doing chemo. My hemoglobin got so low at the end that I had very little energy left and had difficulty catching my breath. The chemo nurse told me to eat red meat, but I only did a little bit more than usual. I should have eaten red meat every day while undergoing chemo, as it would have helped my red blood count and the hemoglobin level. I thought to share this info with you so that you will be able to upkeep your energy for traveling. Keep fighting! You can do it! You have power!

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited March 2011

    Just checking in to see how everyone is doing.  : )

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  • Survivorwoman
    Survivorwoman Member Posts: 620
    edited March 2011

    I was checking in too. I had a lousy day at the hospital today. Maybe it was the weather -- back to winter again (?)---- and had a rather emotional day. Crying and all.....

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  • citykitty
    citykitty Member Posts: 244
    edited March 2011

    Final chemo tomorrow!  Then Herceptin every three weeks till the end of the year.  Also, today my exchange surgery date was confirmed:  April 22.  Progress!

    Survivorwoman, sorry you had a rough day.  Hope you're doing better.  Thanks for the nutrition tip.  I try to get some protein at every meal, but no one said anything to me about lots of red meat.  The good news is they keep telling me my blood counts are all good.  One nurse said by looking at my counts you wouldn't think I was on chemo, they were so normal.

    This Sunday, if I'm up to it, I plan to run a 5K cancer benefit in Manalapan: the Paulette Steps Toward Cancer Wellness.   The race was founded by a running friend of mine who was a healthy marathon runner until her colon cancer diagnosis a couple of years ago, out of the blue.  She just celebrated one year cancer-free. 

    How is everyone else doing?

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  • AnewBeginning
    AnewBeginning Member Posts: 536
    edited March 2011

    Hi Survivorwoman

     I'm sorry to hear you are not feeling well but hopefully each day will get better for you.  I am kinda new here and was reading your dx and it sounds kinda like mine.  Before my lumpectomy I was dx with DCIS stage 0 but pathology report said there was a microinvasion.  My surgeon never told me if its no longer just DCIS but from all that I have read Im sure its not so simple anymore.  I have never seen an Oncologist as I didnt just want to pick one off the internet or the yellow pages. I also live in New York and  I was hoping to get referrals from patients who love their Oncos.  A friend gave me a name today of a Onco at NYU but I would like 2 opinions anyway. 

     Do you have any recommendations?  It would really be appreciated.  Hope you are feeling better by the time you read this. 

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  • Survivorwoman
    Survivorwoman Member Posts: 620
    edited March 2011

    NewBeginning: Welcome to our group. And thank you for your kind words. I am slightly better today. My oncologist is at Bellevue Hospital, but she also works at another hospital (NYU, I think) as well. Her name is Dr. Omene and she is the best : knowledgable, sweet, compassionate and will spend time with you, won't rush, and will listen to all symptoms. I really hope that you will find a good one very soon who you will like, as it is important that you can trust them. My first oncologist was a young woman (student) who did not care much about anything. When her residency was over at the hospital she neglected to assign me over to another doctor and I almost fell through the cracks. I had three chemos without a doctor's supervision. When I demanded to get a doctor at last, I got very very lucky and got Dr Omene who is the best.

    Please keep in touch with us here. We sometimes meet in the city to pour our hearts out to one another. Let us know how it is going for you. Best wishes.

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited March 2011

    Friend w lymphoma became an angel yesterday.Cry

    I had a clear, boring mammogram yesterday (YAY!) - making it all that much more bizarre. 

    NewBeginning - I'd like to invite you to the DCIS area of the site if you haven't posted there already, there are several women who have had microinvasion who can probably be helpful to you.  I was "pure" DCIS, so don't really know the nuances you're dealing with.

    My onc is Volm at NYU.  He's OK but I don't looove him.  My treatment is pretty straightforward (Tamoxifen or not) so who my onc is isn't really a big issue for me. I'd also consulted with Matt Maurer at Columbia but didn't stay at Columbia.  He was OK, I might have even liked him better than Volm (don't remember, long time ago) but wasn't madly in love w him either.

    I've heard great things about Oratz at NYU, but some absolutely love her while some don't like her at all....  and also Anne Moore at Cornell.  

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  • debnyc
    debnyc Member Posts: 111
    edited March 2011

    Hi Ladies!

    It's been a long time since I've been to the boards. Lots has happened since the boat show :) I've actually ended up getting involved at SHARE, self-help for women with breast or ovarian cancer as part of my new life.

    We're having a couple of great (free) educational programs comings up that I thought you may be interested in attending. The first one is on Complementary Medicine on March 30th (next Wednesday). It's part of our Young Women Empowerment Series. (I know all of you women are young at heart and are welcome to come). The second program is on Genetics and Decision Making and is on April 6th. If you're interested in attending or would like more details, please check out SHARE's online calendar at http://www.sharecancersupport.org/services/calendar_of_programs/

    Hope everyone's doing well. When's the next meet up?

    BTW, if you're still looking for an NYC Onc, I LOVE mine, Dr. Amy Tiersten at NYU. 

    xoxo

    Deb 

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  • Survivorwoman
    Survivorwoman Member Posts: 620
    edited March 2011

    Sweatyspice -- I am so sorry about your friend. It  must be difficult for you right now. Love you!

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  • AnewBeginning
    AnewBeginning Member Posts: 536
    edited March 2011

    Hi again Survivorwoman

    I got the names of 3 Oncos yesterday at NYU and made an appt with Marleen Meyers for 4/8. Have you heard anything about her?  Im so glad you found one that you love as I know its so important not to have second thoughts about our doctors. I cant wait for the day to finally see an her but of course I am a wreck here thinking I am going to get bad news.  I try so hard to be positive as I know how important it is but I am having such a hard time with that.  I try to come here often and I amazed at the attitudes of most of the woman who share this dreaded disease. Thank you for your well wishes.

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  • AnewBeginning
    AnewBeginning Member Posts: 536
    edited March 2011

    Sweatyspice

    Im so sorry to hear the news of your friend. Thanks for the heads up on some of the Oncos but I finally got an appt at NYU yesterday and will be seeing her 4/8.  I did post on DCIS and do find it helpful but again I think I guessing the worst case scenario for myself.  I am ER/PR- so Tamox is not an option for me.  Its nice to meet you NYC ladies although I wish it were under better circumstances.  Best wishes

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  • AnewBeginning
    AnewBeginning Member Posts: 536
    edited March 2011

    Hi Deb

     I got an appt at NYU with Dr Marleen Meyers for 4/8.  I'm just hoping she agrees with my BS that I dont need chemo.

    All the best

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  • Survivorwoman
    Survivorwoman Member Posts: 620
    edited March 2011
    NewBeginning: Hi ! It is good you were able to make an appointment with one of the oncologists. It is wise to get two or more opinions. I am also new at this illness and I am still not quite over the anger/shock phase, which a friend pointed out to me yesterday. I guess it will take time to get over it or at least not to think of it, but I am trying very hard to move forward and keep the bad things that I have been through in the past. It is very hard. I hope you have a good social support system around you.
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  • AnewBeginning
    AnewBeginning Member Posts: 536
    edited March 2011

    Survivorwoman

    Im so sorry you to hear about your lousy day.  I guess it just comes with the territory?  I too wake up  depressed (unlike me) and just want to do nothing at all.  Hate getting out of bed lately.  I just feel whats the use of fighting this?

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  • AnewBeginning
    AnewBeginning Member Posts: 536
    edited March 2011

    Survivorwoman

    I do have support although I kinda shut myself away when I cant face certain things so I feel totally alone.  Today I just didnt want to even get out of bed.

    Hope all is well with you

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