Crazy Sexy Cancer in Seattle

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  • Tina-in-Seattle
    Tina-in-Seattle Member Posts: 100
    edited June 2009

    Hi All!

    Jean/April- thanks for the concern on my cousin, we are waiting.  It does feel like some black cloud is hanging over us sometimes.  So happy to hear about your sister, but sorry your mom has to do all this testing.

    I don't remember if I said I was thinking about pulling the plug on work.  As I looked at my treatment schedule with RT coming up I just thought that it was all too much to commute to downtown Seattle, then up to Everett for treatment  or vice versa.  Dropping the kids off or picking them up.  It just overwhelmed me just thinking about it.  It's a bit weird not getting up and going to a job, I feel like I'm missing the action out there.  I am hoping to start something from home.

    The support group was pretty good, I met some really great women there.  However, two of them have the same PS as I do and had major, really major problems with him. So I'm a bit freaked out, I've had a positive experience with him so far but he still has to finish me eventually.  Does anyone know anything about switching doctors mid stream?  I don't know if I will do that I did check him out before I went to him and the Providence breast center gave him high marks as did my breast surgeon.  So what to do?  How do you know your doctor is doing the right thing by you?  AHHHHHHH! I hate cancer (Skinny Maria as I loving call her). 

    Tracy how are your feeling.  I hope better each day.

    Well off to the next thing on today's list, 7:56 and not over yet!

    Tina

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  • tkone
    tkone Member Posts: 511
    edited June 2009

    Hi Tina and all,

    I am feeling like a sausage!!!  I am very tired of being wrapped.  I go in tomorrow though for my post-op appointment so hopefully she will have some miracle cure for the continued swelling.  I don't feel bad and am not in a ton of pain, but come on!  I feel like I am going to bust out of my clothes.  Sigh.  It will all be worth it, right?  Also sick and tired of sleeping on my back.

    OK, enough whining.  I can't remember if anyone besided Carole and I are doing the 3 day in September.  I am going to be at the expo they are putting on for walkers and potential walkers this Saturday at Shoreline community college on one of their panels.  If anyone happens to be there, look me up.  I will be doing the fundraising panel from 12:00-12:30

    Hopefully they don't mind having a sausage on the panel Frown

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

    Tracy - sorry you are so swollen - I imagine that it is typical, and hope your surgeon has a quick remedy.  Something for me to look forward to.  I like the lipo on the arm  - don' t know if I can talk my surgeon into that or not. 

    I will be in the middle of radiation in Sept. so am not doing the 3 day this year - I have no idea how i will feel!

    Keep us posted on your post op appt. 

    I am looking forward to seeing everyone next week - one my last infusion day!!!!!

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  • ginagina
    ginagina Member Posts: 327
    edited June 2009

    Tracy - fingers crossed for your post op appointment. Also, I am thinking about the 3 day. I dont have any chemo/surgery plans for the summer (do TEs in September)...just hoping to get back in shape, grow some hair, live normally. Would your expo be a good idea to figure out how to get involved...knowing that there isn't time to train for the 60 miles? I like the idea of getting involved but not sure how.

    Susan - can you start counting down the days? How about those cytoxan pills (dare I ask???) It is almost here!!!

    Jean - so glad to hear about your sister. What a roller coaster. 

    Tina - hope you are feeling better!

    Gosh - is this weather fabulous or what? Hope it holds through the weekend.

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  • Madge24
    Madge24 Member Posts: 150
    edited June 2009

    Ladies,

    I saw Dr. Susan Love on the Today show yesterday.  You probably know she wrote a book several years ago, periodically updated, called the Breast Book (I think).  Anyway, she has now has partnered with Avon to create a research foundation.  The main goal of the foundation, called www.armyofwomen.org, is to enroll/enlist a million women, both those who have been diagnosed w/ breast cancer and those who have not, to answer questions and participate in studies. Love said she was motivated to start this after scientists told her they had trouble finding women to participate in breast cancer research studies.  Anyway, if you're interested you can look at the site.  I registered and plan to just do questionnaires; they have a privacy policy, too, re: information they collect.  I doubt any of us -- with treatment schedules and kids -- has any time to participate in studies but I just thought I'd put it out there for people to know about.

    On the Today show segment, Love was part of a panel that included the Amer. Cancer Society, and they discussed strides in cancer research, but, honestly, nothing you all wouldn't know already probably.  The interview is probably still up on www.msn.com under the Today show.

    Anyway, thought you all would be interested.

    As I've written this, I see the dog has commandeered one of my shoes in the back yard -- her way of saying let's go for a walk.  So, off I go.

    Enjoy the weekend.

    Peggy

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  • tkone
    tkone Member Posts: 511
    edited June 2009

    Gina,

    The expo would definitely would be a good place to start!  Let me know if you end up coming so I can say Hi.

    Peggy-I am on the army of women as well.  I think it is a great cause.

    Hope everyone is having a good day.

    Tracy

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  • golfer779
    golfer779 Member Posts: 1,378
    edited June 2009

    Peggy, good idea to share the info of Dr. Love ... I'm signed up with the Army of Women as well. 

    Gina, I agree with Tracy that attending the Expo will hopefully answer any questions as to what roles can be assumed at this point for the 3 Day.    Hopefully we'll be able to chat on the 17th as well.   From my experience last year, support from the cheering stations as well as "walker stalkers" (those who would drive by numerous times with music blaring, and whooping it up), we're quite the pick me ups.   I'd love to share my photo album from last year as well, it has some pretty cool pics of those types of things.  

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  • tkone
    tkone Member Posts: 511
    edited June 2009

    Hi all,

    Carol reminded me that our get together is planned for next week (not sure how it got to be the middle of June already!)  I thought I would take a roll call of those who might be planning to attend.

    6:00pm Red Robin at Pier 55 in Seattle, June 17th.

    Tracy

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

    Tracy - I will be there next week!

    Susan

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  • libby
    libby Member Posts: 165
    edited June 2009

    I will be there.  Libby

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  • ginagina
    ginagina Member Posts: 327
    edited June 2009

    Tracy - I will be there on the 17th too! I will also try to come by and see you tomorrow...will see if the kids cooperate!

    gina

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  • golfer779
    golfer779 Member Posts: 1,378
    edited June 2009

    Happy Saturday morning ..... Looking foward to the 17th as well. !!!!

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  • Madge24
    Madge24 Member Posts: 150
    edited June 2009

    I am going to try to come on the 17th, depends on the hubby's schedule.

    Aprilgirl and golfer -- I don't know how to send a PM so what ferry are you taking and you are walking on, right?

    Peg

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  • jeanbean
    jeanbean Member Posts: 61
    edited June 2009

    I plan to come to the get-together but work that day so might be a little late.. If any of you Kitsap folks want to park at my house and walk to the ferry, PM me so I can give you my address.

    Tracy--how's the swelling? 

     Peggy--thanks for the info about the research; I'm going to check it out.

    My mom saw the team at SCCA on friday. We were very happy with the team and thought they were very thoughtful and thorough. The good news is they think it is slow growing so just want to watch it for awhile. The bad news is, they want to watch it because her liver is working so poorly that if she has any kind of procedure she could die! If the tumor looks bigger in 2 months they may consider a lumpectomy under local. Any adjuvant (chemo) therapy is out of the question and they think radiation is of little benefit for her.  The worst news (in my mind) is that she is no longer eligible for a liver transplant because of the BC. My mom's just happy to have a break from procedures :) ! Thank you to all for listening,

    Jean

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  • Madge24
    Madge24 Member Posts: 150
    edited June 2009

    Oh, JeanBean, I will keep you and your mom in my prayers.  Good golly, how much can the dear woman take?!!  I am happy too that she has a break from the procedures.  They are stressful and exhausting.  I hope she can rest up and maybe go for a nice ice cream at the fancy ice cream place on Bainbridge!

     Thanks for the offer of parking at your place.  How do I PM?

    Thanks,

    Peg

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  • jeanbean
    jeanbean Member Posts: 61
    edited June 2009

    Peg, I'll PM you. Just go to your "Home" page and you'll see a header "Private Messages".

    Jean

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  • tkone
    tkone Member Posts: 511
    edited June 2009

    All,

    Swelling is still there.  It is moving around a bit, but I am not quite as uncomfortable as I was.  Did try on an actual button down shirt yesterday from my closet and it was huge on meLaughing!

    Glad to see so many are coming on the 17th.  I have a couple of other friends who are in Seattle but not on the boards that I have mentioned it to.  Don't know if they will come or not, but what the heck?  Might as well all get the benefit of each other!

    Have a great Sunday and I will see you all on Wednesday.

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  • golfer779
    golfer779 Member Posts: 1,378
    edited June 2009

    Peg, you should be seeing a little pink (1) under private messages on your main page.  That means you have a message in your private mail box.  I sent a test message to you.  Just click on private messages, you can respond, etc.

    I'm planning on parking and walking onto the ferry ... will look at the boats  ... hoping that Susan is planning the same, and I see that Jean has offered a place to park.  Looks like some PM's will be happening in the next day or two. 

    Looking forward to meeting you and seeing some of the sister friends on Weds.

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

    Hello - thank you Jean for the parking spot!  I am sorry that your mom is going thru breast cancer in addition to her liver issues.  At least they feel this is slow growing.  It sounds like she has a great attitude about this, and I am happy she will not have to endure chemo.

    Tracy - sounds like you are doing great!

    Carol, Jean and Peg - I am thinking if we take the 5:30, we will be about 10 minutes late - does that give you more time (to get off work and husband home)?  Carol, I agree - parking and walking on is best - last time we took the 4:35 and had a nice walk first.  I am up for either! 

    Looking forward to seeing you all!

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  • jeanbean
    jeanbean Member Posts: 61
    edited June 2009

    I am going to try to make the 5:30 but it's always a little unpredictable about when I am able to extricate myself from the office. Carol, Peg and Susan--go ahead and take whichever boat works for you and I'll get there as soon as I can.

    Tina--sorry those woman at the support group freaked you out! Having to have all these procedures makes us feel so vulnerable too. That's a hard decision about whethor or not to change mid-stream. I wonder if there's some way you can talk to some of his other patients to get a more balanced view. 

    See you all soon!

    Jean

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  • cheers247
    cheers247 Member Posts: 270
    edited June 2009
    Oh, I am so glad to find this thread!!! SEATTLE, yay!  I was diagnosed with IBC on 4/17/09.  I am divorced, 34, I have a 17 year old son.  I am a nurse, on medical leave during chemo.  My next chemo is tomorrow (tues).  I do not tolerate chemo well, I'm on AC now, but I was on TCH for the first 2 doses, then had a terrible rxn to the T, so got switched to AC, this will be my second AC.  I get so nauseated with AC.  I take Emend, Aloxi & Zofran for nausea.  Looks like there's a get together on the 17th.  I'll be in bed with my Zofran Frown but I would love to meet others who are going through what I'm going through, I've been feeling so alone in this.   Much love!  Jessica
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  • ginagina
    ginagina Member Posts: 327
    edited June 2009

    Hi Jessica - so glad you found us...no one should go through this alone!  Where are you getting treatment? I am at Swedish. I started off on TC (without the H) as well and got switched to CMF becuase of terrible reaction on #2. What a rollercoaster ride!  The get togehter on Wednesday is only our 2nd time meeting (I think?) but we had so much fun the first time I am sure there will be other opportunities! Good luck tomorrow!

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  • tkone
    tkone Member Posts: 511
    edited June 2009

    Hi Jessica

    I'm glad you found us too.  I'm sorry the timing doesn't work out for the get together.  If by some chance your steroids are still working-feel free to come meet up with us!  Otherwise, like Gina said, we will most likely do it again.  Where are you a nurse at?

    Best of luck tomorrow.

    Take Care

    Tracy

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  • Tina-in-Seattle
    Tina-in-Seattle Member Posts: 100
    edited June 2009

    Welcome Jessica, so glad you found us!  You're not alone in this.  I did not have the same chemo you're on but it was a bear all the same.  You can do this and get through it!  If you every need anything call on me, we are all here for you.

    I can't make the get together!  ARRRRR!  I have a RT appointment late in the pm and will never get through the traffic from Everett to Seattle.  I am bummed but hope to make the next one.

    Tracy hope you continue to feel better and the swelling goes down quickly.  Sounds like you are doing great.

    Jean, your mom is in my prayers.  I am glad that she is getting a well deserved break from all the appointments and poking. 

    As for my PS well I've had good results with him so far.  I came through my mastecomy quickly and with little pain.  But yes it is hard when you hear other women saying that he did not do what they expected.  I have researched the WA State Med board and other places to see if there are complaints against him and can find nothing so far.  There is a new PS coming to Providence in August, I am considering meeting with her.  The thing that got me was the facilitator also commented that this PS's name comes up frequently (although I'm not supposed to divulge this outside of group, but we are a group as well).  So still thinking.

    I met with my RT Onc last week got my tats but am still freaked out by the surgical margin!  I know silly right.  But apparently the larger tumor (I had two) was close to chest wall and the cancer was present up to the interior margin making it difficult for the surgeon to get the wider magin he would have liked.  He got the tumor and the junk around it but not that nice big fat margin surgeons so love.  So the RT Onc is going to radiate the whole chest wall with a higher dose of rads instead of just localizing it to the areas where the tumors were found.  Does anyone else here have or had the same experience with unclear margins?  I just told my doc to get the biggest stick she can find and hit this bitch with everything she's got.  But I did spend the weekend with my friend Clonipin.  I hate cancer!!!  And I hate that I can't meet all of you in person.  But hopefully will the next time.

    I hope you all have a great time and have a fruit juice for me!

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

    Jessica - happy you found us.  Absolutely you are not alone.  I'm sorry for the nausea - hope this weeks chemo is better, or the meds control it better.  As Gina and others mentioned, if you can't make it this week, we will get together again!

    That goes to you to Tina - sorry you can't make it and I am sorry that you have heard things about your ps that concern you.  I don't know what to tell you about that.....did they have the same procedure or a more complex procedure?  We have so many decisions to make!

    I will start radiation later this summer, so I can imagine you are nervous to get started.  

    I switched my last chemo date to Friday.  There was just too much going on in my kids lives to get into Seattle twice on Wednesday, AND my favorite chemo nurse is working Friday not Wednesday, so the 19th will be IT.  Wednesday is the last day of school here on the island.

    Those chemo nurses are so important.  Love them.

    Susan

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  • cheers247
    cheers247 Member Posts: 270
    edited June 2009

    Hello again ladies!!  I am having my treatment at Swedish (I also work there, but I'm on medical leave right now).  Have any of you experienced "chemo brain" during treatment? My onc. sent me to a neurologist today. I hope everyone has a great time at the gathering!!  I'll check in again when I recover from chemo tomorrow.  Loves, Jessica

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  • Madge24
    Madge24 Member Posts: 150
    edited June 2009

    Cheers247 -- Welcome!  You are not alone, we are with you!  We are glad you are on the thread board and going through this journey with us.  I'm getting treatment at Swedish too; my onc is Dr. Rinn and a few others on this thread see her too.  Why the neurologist?  Maybe I need one too, i can't remember where I park the car anywhere anymore!

    Tina -- Sorry you cannot join us this time, we'll miss you.  I have not experienced the rads yet, but will face it in the fall after chemo...I did not have clear margins on one of my tumors (I had two also).  So I may experience what you are going through, too, I just don't know yet.  Hang in there, honey!

    golfer and aprilgirl -- DH will be home so i'll be able to go Wed.  I'll try to PM; if my computer competence fails, I will call aprilgirl and coordinate!

    Peg

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  • golfer779
    golfer779 Member Posts: 1,378
    edited June 2009

    Peg ... I'll probably give Susan a call tomorrow to coordinate as well if you would like to chat with her .... looks like your our go to gal there Susan .... hope your "up to snuff" this week with all your going's on!  Chat Tuesday ????? Let me know if/when you might be available if you get the chance.  Hate to bug anyone during "family" time if you know what I mean !!!!

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  • TwillNW
    TwillNW Member Posts: 46
    edited June 2009

    I have not been on the boards much in the last month or so (living life - yea!), but I am planning to come on Wednesday - I have my rads planning session in Renton in the afternoon so will come from there.  Looking forward to meeting you all -

    Tricia in Enumclaw

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

    Tricia - great!  Looking forward to seeing and meeting those who can make it tomorrow night.

    Carol and Peg - let's talk tonight or tomorrow to coordinate our ferry ride!

    Jean is going to meet us over there.

    Susan

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