The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 255. Re: The journey continues - Part 7
    Registered Users
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    Hi Penny!

     

    You keeping a "sharon calendar" or what??  LOL  Yes, my self-imposed summer vacation from Benda officially came to an end today.  Went to the new infusion clinic at the new oncdoc's office and things went pretty well.  They even have a variety of drinks and snacks available for the patients (something else not done at the old oncdoc's clinic).  No fewer than 5 nurses of  various levels floating around the floor of 10 chairs - only 3 of us this afternoon.  Old oncdoc had several nurses but only 1-2 dedicated to the infusion clinic and there were a total of 12 chairs.  Felt almost overwhelmed with all the "attention" this afternoon  LOL  Was paid visits at different times by each and every nurse.  Talk about "the royalty treatment".....  lol

     

    Anywho, my red count was a wee bit low so I got a bonus injection of procrit.  No benadryl in the pre-meds (yay!!) and the whole labs, infusions, injection, etc was less than 2 hrs from beginning to end.  Chairs are OK as far as comfort goes but nothing I'd want to snuggle into at home.  Nothing provided for entertainment - and I forgot to take my radio/earbuds but will remember tomorrow.

     

    Oh - and had to do a little advocating for myself.  They don't know me yet and how stubborn I can be in achieving what I want.  LOL  Want 28-day cycles (had me set for 21)....told them why 21 wouldn't work for me...got what I wanted.  Want neulasta after every cycle (they do something similar to neupogen only of needed and it's injections several days in a row)....said that was unacceptable, gave my history of the wait and see strategy and it wasn't pretty, insisted on neulasta...... gonna get it.  Wanted nuelasta on Friday mid-day, on my way home from work as I was beginning the 'crash'.... (hmmm...should get it on Thurs afternoon)....nope, can be 24-48 hrs after last infusion, Thurs won't work...has to be Friday...  Got what I wanted.  <hehehehe>  Who do they think I am?  Some first-timer at bull riding this big mean lymphoma??  Not only am I no rookie, I think I've earned the biggest, shiniest belt buckle by now.  LOLOLOL

     

    Anyway, the decadron isn't gonna keep me up tonite.  Headed to bed soon and will go back for cycle 2 tomorrow.

     

    Thanks for checking in on me.  Hugs and sweet dreams of ice creams...... 

     

    Sharon

  • 256. Re: The journey continues - Part 7
    Boudica Registered Users
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    Yeah - I'm a stalker. I try and keep track of my friends who have made such a huge difference in my fight with this damned thing. And since you have the shiniest and biggest belt buckle, you're easy to spot! Not to mention the aroma of 'possum in the pot!

     

    Well glad you went in there and got them on the program right from the start. Bet the nurses were a little stunned when the whirlwind touched down! Sounds like a much better atmosphere than your old onc's. My place doesn't have entertainment either, but I slept through it all due to the Benadryl anyhow. We did have snacks and drinks tho.

     

    Now the important thing is to get down to business and get this danged thing beat! I am sending you all the most positive blessings, thoughts and prayers. You GO girl and let this time be succesfull!

     

    Penny

    xxxx

  • 257. Re: The journey continues - Part 7
    Registered Users
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    Day 2 of Cycle 7 under my (big shiny) belt buckle. LOL  Went just fine.  That place understands a time schedule for which I'm appreciative.  They operate very efficiently but with plenty of focus on their patients.  Perhaps that comes from having the right ratio of staff as well as not overbooking the docs plus the docs actually being on-time and focused.  All things that seemed to become lost at the former place.  <sigh> 

     

    Anywho, did get the Neulasta issue taken care of and will have it at the clinic, on Friday mid-day as requested, just have to make it by noon otherwise I'll have to wait til 2 (office closed) but now that I know that, if i miss the cutoff...shame on me.  lol

     

    Kickin' back and chillin' tonite.  Slept OK last night although (because of high blood sugar caused by the steroid) did have some pretty serious sweats.  Before I've had night "soggies", last night was a night "downpour" and had to change nighties as well as turn the fan on high to let the sheets dry before going back to bed.  Thank goodness the recliner if a comfy place for a nap.  Sugars come back to normal range fairly quickly though - usually w/i 18-20 hrs after chemo so prolly another night of drenching but after that all will be well.

     

    Crash out awaits me on Friday thru Sunday but that too shall pass.

     

    Thanks for your kind words Penny....don't mind you stalking me at all.  Someone's gotta keep me in line.  LOL

     

    Hugs to all

  • 258. Re: The journey continues - Part 7
    Jeri Registered Users
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    Glad day 2 went well Sharon.  Did you get any scans before starting up again?  How are the peskies in the neck?  It's great you have a more comfy place to go - they should install some tv's in there to occupy you guys with.  My chemo room has big comfy recliner chairs (they're even heated), and tv's, along w/the drinks, snacks and a decent lunch (soup, sandwich, chips and cookies) if you're there for the day.  Makes a crappy experience a little better.


    Hugs, Jeri

  • 259. Re: The journey continues - Part 7
    CookieMonster Registered Users
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    Here you are Wonder Woman of the desert!  Ick, wet sheets, don't like that either.  Wish it wasn't so for you.  Like you said, though, this too shall pass.  As usual, your great attitude and determination shine through . . . yup, must be that shiny buckle you got yourself.  

     

    I found the tv in my oncdoc's infusion area caused more "noise" than help.  Most times it was off probably because no one could agree on what to watch.  I, like Jeri, slept most of the time. 

     

    Hugs, blessings and prayers dear one,

    Jane

     

     

  • 260. Re: The journey continues - Part 7
    julindy Registered Users
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    Hoping things go smoothly for you, honey. Take care of my friend, okay? Love,Judy

  • 261. Re: The journey continues - Part 7
    CaffeinatedSocialWorker Registered Users
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    *rubs shiny belt buckle for luck*

  • 262. Re: The journey continues - Part 7
    bjm Registered Users
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    I HAD to respond to "someone's got to keep me in line."  You, Sharon?  Give me a second.  Ok, I'm done laughing. 

    I'm desperately trying to imagine the creature that would attempt that impossible task.  You SO rock, Sharon.  Don't blush...you've raised the bar in my mind on those with fight and integrity and humor.  A hero.  I would not like to meet  you in a dark alley (my friends know that's my highest compliment for fierce people, whether they are protective mothers, cancer fighters, negotiators, people who fight for what they believe in...)

    xoxo

    bonnie

  • 263. Re: The journey continues - Part 7
    CarolSings Registered Users
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    *Rolling up sleeves*  *stretching fingers* *shaking out feet while standing*  * tilting head from side to side*  *putting on gloves*  *theme from Rocky starts to play*  Da da DA daDa DA...

     

    Let us all hold a strong thought for you of winning this fight.  Look at all you have done already.  When you're in the down low place we will hold a spot for you where you are strong, healed, cared for, loved, and living a wonderful life.  I truly and totally believe that you can do it, are doing it, will do it.

     

    I leave you with this thought.  I saw a poster once that made me laugh and laugh.  It was completely black with a couple of eyes on it looking askance.  The words on the bottom were... "It's always darkest before it's pitch black".

     

    I was in the hospital last Christmas time getting four days in a row of three kinds of chemo.  I looked like shit.  There was a woman in the next bed.  Her husband looked at me and said very sweetly, "You'll be fine, my wife's been coming here for 8 years".  She had a tube down her throat cause food wouldn't stay down.  I had to inwardly laugh.  THE most difficult part of treatment for me was keeping a positive attitude, and believing in my own ability to heal.  This was so over the top a discouraging remark that I laughed it off.

     

    Sharon, you have been working through all of this.  I am so impressed with that.  You take time to help others.  You are very very strong and that strength is enough... more than enough.

     

    Love you,

     

    Rah rah sis boom bah

     

    Carol

  • 264. Re: The journey continues - Part 7
    AndyH Registered Users
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    Dear Sharon,

     

    I've just started my first website. I've designed it to help people with cancer to beat cancer and not just survive it. The site is at : www.beatcancer4ever.com  .I put the site together because my stage IV follicular NHL  has just re-occured after 83 months! I guess in the NIH record books my case is cancer free (60 month statistics) but I've got a mass growing in my rt. mediastinum that is wrapped around my bronchi and is laying on my pulmonary aorta. I guess what Mark Twain said is true: " there are liars, damn liars, and statisticians!"

    For this go around I have decided to use both western and non traditional therapies. The latest chemo for indolent NHL seems to be bendamustine. One oncologist I work with believes that there may be long term effects to the T-cells and is concrned about bone marrow transplants in the future. Have you heard anything about this?

    Let me know

     

     

    Andy

  • 265. Re: The journey continues - Part 7
    NetNewt Registered Users
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    Hi Sharon

    Glad to hear you like your new onc's facilities. Hate those sweats - hope they settle down again soon and you get through the weekend OK. Am thinking of you - the restart of treatment has come round so quickly - time is really flying by. Take good care of yourself and settle into your recliner to take it easy for the weekend. I too am amazed that you continue to work through all this - I was in sucht a state of self pity that I could never had managed it. You are an inspiration to us all. I am off next week to a Light the Night for Leukaemia and Lymphoma and I will think of you while there - I have my boys coming with me so we will all carry different coloured balloons. Hope it is all on the up for you now until next treatment.

    Hugs

    Lyn

  • 266. Re: The journey continues - Part 7
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    Hi all and thanks for checking in.  Your kind words and encouragement mean the world to me!

     

    I've been kinda in the basement since Friday and finally crawling back up the stairs today.  Worked just a half day on Friday, got my shot, stocked up on some light foods, came home and more or less crashed til 6 AM on Saturday.  Guess all my not sleeping well Tues-Thurs nights finally caught up with me.  Sweats on Tues/Wed night (sugars back under control by mid-day Thurs - YAY!) and then really swollen legs/ankles/feet from the Procrit on Wed and Thurs nights(back to normal yesterday - double YAY!) all caused restless sleep.  I was just going to "nap" on Friday afternoon and that nap lasted more or less til Saturday morning.  LOL

     

    Oh well, yesterday I could feel the start of the upswing and today is a little more.  At least I can do more than be a lump in my chair or on the bed.  LOL  Not up to starting a marathon but maybe a (really short) sprint.  Just don't like the get my butt kicked even for a few days!  Don't like not having any energy.  Don't like the lack of mental clarity and focus.  It's not me!  I know, I know...it all passes but man! I don't like it when it hits.

     

    Trying to remember some of the questions posted and prolly will miss more than I remember but here goes...  Jeri, no scan except for the follow-up chest CT due to the little flecks and flakes of unknown origin that showed up a couple months ago.  Lung doc doesn't have a clue as I have no symptoms of any infection.  Oncdoc doesn't have a clue cos it doesn't look like any form of tumor.  Did get a call from the lung doc saying it had improved but wanted me to call him back - just haven't had the energy.  Will do that tomorrow.  I never could do things the easy way.  lol

     

    Andy - welcome to the boards!  I haven't done any checking on depletion of t-cells and how that may effect future SCT.  My docs have never talked about it.  So I dunno.....  SCT is the last thing on my list to consider at this point for a whole variety of reasons not the least of which is the  whole idea scares the bat snot out of me.

     

    Hope everyone has a good week.  Blessings and light to us all

    Sharon

  • 267. Re: The journey continues - Part 7
    AndyH Registered Users
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    Sharon,

    thanks for the welcome! I've been going crazy with about 120 hours of 

    research since my cancer returned in May (well it was found then 

    anyway). One of the non-AMA treatments i've  been hearing about is the 

    use of apricot seeds. The have something called vitamin B17 in them. 

    It makes them taste bitter. In fact most fruit seeds have his B17 

    stuff in them. If you have the interest ckeck out this link to a video 

    series on youtube: http://www.youtube.com/watch?v=MJ_4YkekV9A

    I think the whole talk is interesting and I have confirmed that it is 

    illegal for MDs and DOs to recommend alternative therapies. Kinda 

    thought provoking......

     

    Andy

     

    AndyH,

    >

    A new message was posted in the thread "The journey continues - Part 

    7":

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    Author  : sha_shelt

    Email   : shashelt@msn.com

    Profile : http://community.lls.org/people/sha_shelt

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  • 268. Re: The journey continues - Part 7
    kgirl Registered Users
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    In my mind you are the "light" for many of us.  Keep on kickin' the devil's behind and you must know by now how many of us are pulling for you with oxcarts, muleteams, and the hearts of lions.  You are our Guru of the "yes I can and will".

     

    Kgirl

  • 269. Re: The journey continues - Part 7
    stella27 Registered Users
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    Sharon, havent posted in a while but wanted to let you know that I am praying for you. You give us more help and hope than anyone. I applaud your 'giving' even when you are in a battle. You are always here, bless you.

     

    stella

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