The Leukemia & Lymphoma Society - Fighting Blood Cancers
24 Replies Latest reply: Jun 11, 2011 8:39 AM by jgold RSS

5 years...almost

hilton8433 Registered Users
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Hey all,

Hope you are all hanging in there in your various stages of treatment and remissions.  I hadn't posted in awhile so just thought I'd say hello and give an update.  Tomorrow is 5 YEARS AGO that I sat in my oncologist's office for the 1st time and was told I had cancer.  It's a day I'll never forget, like any of us will!  I was only 26 years old when I was diagnosed.  So much has happened in my life in the short 5 years since my cancer, and I'm so blessed for that.  My biggest blessing of all, of course, is my baby boy Coleston, who is now 10 1/2 months!  He gives me so much joy and purpose in my life, I just absolutely adore being his mommy every day.  I hope and pray I have more time with him, and it's not time for me to start all over again.  I have my 1st PET scan in 2 years (because of being pregnant and then nursing), next Friday.  I'm starting to feel the normal nerves that always come around scan time.  Anyway, I'll update you all after my scan results come in.  After i (hopefully) am given the NED at my appointment, I'll officially consider myself 5 years out

 

I also just wanted to note this, because I've noticed there are alot of new people on the board.  The Leukemia & Lymphoma Society's Light The Night Walk is a wonderful, inspiring event for patients and their families.  It's an easy walk (less than 2 miles) and the events are family friendly with food and activities, plus a program, before the Walk.  All walks take place in the evening and walkers carry lighted balloons (survivors carry a special white balloon). I've had a Light The Night Team for 4 years now and my friends look forward to it each year.  I also work for my local LLS Chapter now.  If you don't know about it, you can find your local LLS chapter on the main www.lls.org site to learn more! Or let me know if you need help and I can direct you to the right person.

 

Tiffany

  • Re: 5 years...almost
    Jeri Registered Users
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    It's wonderful to see your post Tiffany, and I'm so happy everything is well for you and Coleston !  Good luck with your scan!!

     

    Hugs, Jeri

  • Re: 5 years...almost
    CookieMonster Registered Users
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    Hi Tiffany,

     

    I'll polish my dancing shoes and have them ready for your after scan post.  Five years, that will be wonderful!  I'm glad, too, that you have your beautiful baby boy to bring you joy.  Your scanxiety is perfectly normal too.  We're here for you.

     

    Hugs and blessings,

    Jane

  • Re: 5 years...almost
    JohnnyB Registered Users
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    Tiffany,

     

    I am so happy to hear how well you are doing, and your son.  I met you a little over a year ago at the LLS conference in Cincy at the breakout session on follicular NHL.  I don't remember if I told you this, but when I was going through R-CHOP almost 6 years ago, I would often get anxious when falling asleep.  I would automatically think of my 9 month old grandson, picture him, and somehow, I would then relax and fall asleep.  And I then decided that I would live long enough to see him graduate from college.  Six years and counting.  He is now six, playing little league baseball, and addicted to Star Wars Legos.  I just feel so lucky to be here, and to be a grand-father.  I know you feel blessed.  Just try to focus on that.  I also know the jitters about testing.  Last year I felt sick, stomach problems, and was worried enough that I called my oncologist and asked her if I could get scanned a month sooner than scheduled.  I did, and everything was fine.  And I just had my yearly scan last week, and it was fine also.

     

    The Light the Night walk is wonderful.  I invite my friends and family to walk with me.  Last year my chiropractor came.  And a long time friend of 40 years.  It feels empowering to walk with so many survivors and supporters.  I really recommend it.

     

    John B

  • Re: 5 years...almost
    hilton8433 Registered Users
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    Hi everyone it's great to hear from you all!!  Thought I'd post a picture of Coleston.  I'm so looking forward to a long weekend with him!  We are heading out to my parents lake house for the weekend

     

    John, of COURSE I remember meeting you!!  Please come find me at Light The Night this year!  Also, the team captain's kick off will be at the Reds Game on Tuesday, August 9th.  You can bring your grandson!  He would love a baseball game.  I hope to see you there:)

     

    Please take care everyone, and I'll keep you posted when I get my results.  Anyone know if after a PET, I should stay away from my little one?  I'm going to call the PET office to be sure, but I know that I was unable to be breastfeeding when I got a PET, so I'm wondering if because of the radiation, I have to stay away from him?  That will be horrible!!

    10 months.JPG

    • Re: 5 years...almost
      Jeri Registered Users
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      Oh he's just beautiful Tiffany !  Thanks for putting the pic up!  As for the PET, I've never been told any restrictions for afterwards.

       

      Hugs, Jeri

  • Re: 5 years...almost
    bjm Registered Users
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    It's good to see you here, Tiffany, with happy news.  I don't visit the forum as much as I did, but glad I checked to see your post.

    I don't think a PET scan would prohibit you from doing anything now, other that NOT drinking a lot of water because they always tell you to do that after a scan.

    Looking forward to seeing your next NED post!

     

    Coleston is too adorable.  I bet you had much to celebrate when you had your big 30.

     

    Bonnie

  • Re: 5 years...almost
    jprice1355 Registered Users
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    Hi, Tiffany  -   thanks for posting your amazing story!   I was just diagnosed with fNHL - I'll hear on Tuesday what stage I'm in and what will be my plan of action (if any.....).    Your little guy is amazing!!!    Enjoy every minute with him!!!   Every age is special - but that first year is so wonderful watching children learn about the world around them.........it seems like yesterday when I was at this stage with my now almost 20 year old daughter.   (We thought we weren't going to be able to have children - and then miraculously - we had Monica!)   Have a great weekend - good luck with your scan next week!  I'll be thinking of you!

     

    Jo Ann

  • Re: 5 years...almost
    moogaw Registered Users
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    Tiffany,

     

    Thank you so much for sharing your journey with us -  hearing testimonies about long remissions are such an encouragment as I seem to be chasing the elusive remission in my journey.  Your son is a miracle - thank you so much for sharing the photo of him with us.

     

    I am planning on attending my city's Light the Night Walk with my granddaughter.  Alyssa has just finished the 5th grade and as a class project she had to interview 3 people who give back to their community.  She chose a man in the military, a girl scout leader, and a woman that partcipates in Relay for Life and Race for the Cure.  After the project was done her mother (my daughter) asked her what she learned from the project - how it affects her.  Her response was that she wanted to know more about my cancer and if there was a fundraising event she could participate in.  So I told her about the Light the Night Walk and we are planning on going together - hoping to get the whole family to go since it falls on my birthday. 

     

    Will be waiting for your update!

     

    Cindy

    • Re: 5 years...almost
      stella27 Registered Users
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      Congratulations on your 5 years and a new baby. I was told to stay away from holding a baby for the rest of the day of a PET scan, being in the same room is ok but was told not to hold the baby on my lap or things like that. So to be on the safe side, let daddy do all the holding and feeding for the day and you can take a nice break.

  • Re: 5 years...almost
    hilton8433 Registered Users
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    Hey everyone,

    Still waiting for my PET results.  Question for you all...what do you do?  Do you call your oncologist's office and ask for the results, or do you just wait patiently until your appointment?  They've always told me no news is good news so I typically live by that.  But my appointment is not till Friday and I'm having trouble concentrating on anything besides wondering if my cancer is back or not.  I hate to call though, and get bad news by phone.  But if it's good news I want it now!!  

    • Re: 5 years...almost
      FRAN641 Registered Users
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      For  me the PET results were each different.  The first one I had was bad and showed much more cancer than he thought I had.  The day after that test he called me at 9 p.m. to tell me the results and told me to get to his office in a few days.(he was on vacation that time but his nurse called me first)  The next one after my 4th chemo treatment I was getting anxious because I didn't know if I had to get my next treatment or not so I called the office after 3 days and he returned my call to tell me it was fine and no more treatments.  Then I  had my 3 month check up PET and it turned out bad and showed activity in my pancreas so he called me the day after with those results and referred me to a pancreatic cancer doc.  So for me I was crazy with all of them but he was quick to respond when the news wasn't good.

       

      I wish this was easy for us but golly the waiting always makes me nuts.  Good luck with your scan and I'll keep you in my prayers.

      Fran

    • Re: 5 years...almost
      CookieMonster Registered Users
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      Hi Tiffany,

       

      Hmm . . . to call or not to call.  I don't understand why some doctors make their patients wait so long for the results.  Maybe it takes that long and I'm just fortunate to have a doctor associated with a big university and comprehensive cancer center, but I get my results within a day or two if it is a PET/CT, if  it is just a CT scan, I get my scan and see my doctor for the results the same morning. 

       

      I say do whatever you need to do.  No matter the news, knowing something is much better than not knowing in my book.  Knowing, helps us move on to the next thing.  Then again, if any of us could live one day at a time well, maybe waiting wouldn't be so hard. 

       

      How about you take a mental break and join me at Sharon's cabin where we have lots of pets, goodies and plenty of beverages, not to mention gorgeous landscaping with a gazebo. 

       

      Hugs and blessings,

      Jane

      • Re: 5 years...almost
        kgirl Registered Users
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        Hi Tiffany......your baby boy is such a gift, and such a handsome one at that!!!!!  CONGRATS on the five years, you absolutely are a bright light, give us all so much to hope for in this dang world we find ourselves thrown into.  We know the toe tapping, nail chewing waiting, and maybe  the best path forward is the one that gives you the most peace/comfort (is there such a thing in the world of scans??).....SO, whatever your decision is, it will be the right one for you.  In the meantime, please come on over and join us for warm, comforting (and often goofy cause they want to make us smile) critters, dogs, cats, mice (Yep!!) and all the goodies your tummy can handle plus lots and lots of support, sharing and caring.  Sharons Table is presided over by our angel, Sharon, and when and or if in a hard place momentarily, her presence calms and settles.  So hope to see you there, in the meantime, more pics please!!!!

         

        Warm hugs and many blessings,

         

        Kgirl

         

        **Not my Avatar, trying to fix!!!!! 

         


    • Re: 5 years...almost
      Jeri Registered Users
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      Tiffany,

      I am in the same boat - had my PET yesterday and have to wait until next Monday for my follow-up.  I'd call if you're feeling that nervous about it.  I don't think it would matter whether you were in the office to hear good or bad news.  If it's good news, you could relax until Friday.  If not, then you'd have a chance to think about questions you'd want to ask.

       

      Good luck and post when you hear!

       

      Hugs, Jeri

    • Re: 5 years...almost
      JohnnyB Registered Users
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      Tiffany,

       

      Call them.  I usually hear from the office within three working days.  They should know by now.  I know how we can worry about this.  No one else understands.  I think it's normal.  Just call and find out.  Call when your husband is home, or a friend or family member....so you're not alone.  And please let us know, ok?

       

      John B.

      • Re: 5 years...almost
        JudyColorado Registered Users
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        Tiffany,

         

        I'm with John if you're up for it.  From the radiology techs I've spoken with, they know as soon as the scan is done.  Or, wait peacefully if possible!  In the meantime, or after - that trip to the cabin sounds wonderful.  Take care ~ we are thinking about you and praying for the best - Judy

    • Re: 5 years...almost
      MrPat Registered Users
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      Hi Tiffany

       

      Wow, a 5 year milestone, Congrats. I'm sending positive vibes your way. I love to hear success stories. They give us all hope.

  • Re: 5 years...almost
    hilton8433 Registered Users
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    Hi everyone!

    Well I did decide to call yesterday afternoon, after 4, and figured maybe I'd hear back today.  Well my nurse called within about 45 minutes (I have formed a friendship with her, we are about the same age and have babies about the same age), and she said that it was not the dr's policy to share test info over the phone, but since they all know me so well and knew how hard the waiting was especially now with the baby, she wanted me to know that I could breathe easy and that my scan was normal!  She did say that if it was bad news, if they saw anything at all, they would have called before the appointment.  So that is wonderful news, I can officially say that I began this battle 5 years ago and am still cancer free!  Well technically this is 5 years ago my diagnosis, so not actually 5 years remission, but I'm just saying this is 5 years  I will still meet with my dr on Friday to touchbase...am thinking maybe I go to semi annual visits, and once a year scans possibly?

     

    I know there is no "cure" for non hodgkin's lymphoma.  I work for LLS and know the statistics inside and out.  I'm proud to work here and I know that the money raised through all of the LLS campaigns is going towards research to find cures for each of the very different blood cancers and all of their subtypes. There will not be one giant "cure" for "cancer".  It has to be many, very different "cures".  I have faith that someday this will be developed so that each of us can live in a long remission, or manage their cancer chronically.   I'm thankful for 5 years so far, and wish you all the same and many more.


    Jeri, I'm anxious to hear about your scan as well!

     

    Momma & C.JPG

    • Re: 5 years...almost
      kgirl Registered Users
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      WOO-HOO, what terrific, awesome, wonderful news!!!!! You kicked hinney!!!!!  Drag and drop meCelebrate, kick up your heels-n-do the happy dance.....we're all doing it with ya!!!!

       

      Blessings always,

       

      Kgirl 

       


    • Re: 5 years...almost
      Jeri Registered Users
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      YAY!!! I am so happy to hear your news Tiffany!  I am glad you called, and now you can relax (as much as you can w/a little one - lol)!

       

      I am doing some big Happy Dancing for you !

       

      I expect my results to be fine.  I got a copy of my PET (I always ask for one) and as far I can tell it looks good ~ at least nothing glaringly obvious. 

       

      Hugs, Jeri

    • Re: 5 years...almost
      JohnnyB Registered Users
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      Tiffany,

       

      Yes!  Yes!  Yes!   I am sooo happy for you.  I have made up my mind that the farther out we go, the less likely it is that it will come back.  I don't care if the statistics don't support it.  It just feels right.  And I'm sticking with what I feel.  It's 6 years for me, and I'm finally going on a 2 week vacation (we tried 2 years ago, but my gall bladder had different ideas...didn't go).  Life is good.  And you and your son look so happy.  It's great.

       

      John B

    • Re: 5 years...almost
      CookieMonster Registered Users
      Currently Being Moderated

      Hi Tiffany,

       

      I think I heard your sigh of relief here in Alabama.  LOL!  I'm so glad for your good news and that you came on the board to let us know.  You and your son look healthy and happy and I'm thrilled for you.

       

      Hugs and blessings,

      Jane

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