The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 1,860. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    pegetha Registered Users
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    Thanks for all the well-wishes, everybody!  I finally got my appointment at MDA set up for the middle of April.  They'll be checking me out head to toe, including a BMB (which I've never had).  I'm apprehensive, but excited that I finally have a goal in sight.  Boy, do I ever wish I could take you all with me.  Wouldn't that be great, if we could all do this together!

     

    Have a great weekend, all!!!!!!!!

     

    Hugs,

    Pegetha

  • 1,861. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Patti Registered Users
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    Pegatha: That's great news, and they are really good there, so you'll be in good hands. What Dr will you be seeing there? And for the BMB you can ask for consious sedation and that will calm you down. I wish we could be there for support, but we will be in heart and spirit!   Hug's Patti

  • 1,862. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    hbneil Registered Users
    Currently Being Moderated

    Pegatha,  When I had my Bone Marrow Biopsy done it was somewhat unpleasant but not too bad.  They numb the area with a local first so you mainly only feel pressure and very little pain.  Good luck, I'm glad you got in.  We'll all be pulling for you.  Take Care.

    Neil

  • 1,863. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    flower79 Registered Users
    Currently Being Moderated

    i tried posting by replying through my emial,... and don't know where it went?? anyone know where the replied post ends up that way?


    Pegetha, yea!! i'm so happy and proud of you in succeeding on getting the MDP appt!!  will be praying that this will get you some answers and Especially some good resuts on the right treatment needed for you!!   hang in there my dear!  and rest as needed....


    Dee, i hope your electricity problem gets resolved quickly! and please slow down as needed!


    Patti, how is Jay doing? and i hope you are feeling better yourself


    Neil, your posts are always great to read! you sound so positive always... Way to go!!!   hope you get some nice riding this weekend, we are supposed to have some dry skys this weekend i believe... have fun!


    Mimi, thanks for the info again on the itch medicine.... yeah, the itch for me has picked up! and drives me nuts at times!


    wee Pea, we miss you alot! are they ever going to fix the problem for you?? you must be mighty upset about it,... sorry.


    Pauline, i hope that all is going well with you and Ralph.... 


    and all you MIA's.... we miss you!! post when you can.


    Everyone, have an Awesome and Blessed weekend!!!  

  • 1,864. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    flower79 Registered Users
    Currently Being Moderated

    testing to see if this post goes through.... tried earlier and no luck, i know Patti also tired, and no luck...

     

    Dee, hope your power is back up and running!...

     

    take care all...

  • 1,865. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    memy Registered Users
    Currently Being Moderated

    PEGETHA:.........How wonderful for your upcoming appointment at MDA. I am pleased and happy for you. I hope the Anagrelide is working out for you. Seems like some things are falling into place for you to get some good and proper medical attention and I hope the appt leads to some good answers for you and that perhaps they will have a better treatment plan for you. I'm just so proud for you for your persistence in getting the appointment, getting the ball rolling. I hope all goes well for you there. I am curious as to whether MDA is in your area, or is there a long drive for you? Anyway, good luck, dear.

    DEE: Hope your electrica prob has been resolved by now and you r able to get some rest and relaxation.

    PATTI:.......Hope Jay is coming along and improving day by day. I know you are probably over-working but want you to keep you in the picture as well. You gotta take care of Patti so that you can be of help to hubby, so get some rest when you can.

    WEE P: Still miss your presence here! Glad you and Craig are settling into your new Happy Home and pleased that you are enjoying life to the fullest at long last! I hope that soon you will be back on the forum so you can leave us a wee post! Love ya!

    NEIL:...Always a pleasure hearing from you with your uplifting take on things, easing some potential worry for a lot of us. Hope you are faring well and you've been having some nice weather for riding.

    SARAH:.....As always, hoping things are going well for you. Has the itch subsided any? There is also an over the counter anti-itch lotion, SARNA, which is vert effective for me --but it does not rid me of the itch--I have to take the Hydroxyzine (Atarax), 25 mgs and I use Sarna for the break through itch.  Hope you get some relief from that mean ole maddening itch. It drives me bonkers, and I have come to fear a hot shower!!

    My eyes are closing and must get to bed...love to u all............

  • 1,866. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    lkbanks Registered Users
    Currently Being Moderated

    Mimi,just a note to tell you that your story came to me on my FaceBook page last week.I have read it before on this LLS site but now it is on FB.Loved the story.

    Hope all are doing well today.For me I'm okay just tired and this darn foot just won't get better.Took 3 shots to the heel back in Nov.and Dec.That doesn't hurt now,it is the top of my foot now and I have a knot behind my toes.I'm wondering if it might not be a blood clot in the small veins of my foot.Who knows.I almost quit my job on Friday.My boss said the next one that walks out after 6pm can take their personal tools with them and not come back.I work 11 hours a day and most Saturdays(at least 6 hrs.)Been there 12 years and now I'm talked to like a child.He knew I was P-ed off,so at the end of the day he came to me and asked if I would like Sat off.His way of smoothing things over.I will ask for a meeting next week and try to work this out.I've calmed  down now and I know I can not quit.I need my insurance.I get up 3am and have coffee with my husband and get ready for work.Leave the house at 4:45 and get to work at 6am,off at 6pm and back home by 7:15(on a good day) and in bed by 8pm.sometimes life sucks!But God will keep me going.

     

    Sorry to unload on you.By the way my last Dr. visit,all my counts are just fine,just need an attitude adjustment.

    I hope everyone has a Blessed day.....LindaK

  • 1,867. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    memy Registered Users
    Currently Being Moderated

    Linda, unload anytime u feel like it. We're all here for you and hope things improve for you soon. I didn't see the story abt me yet--don't even know where it would be?

  • 1,868. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    pegetha Registered Users
    Currently Being Moderated

    Linda, just reading your post made me tired!  I work full time, but nothing like what you are doing!  And at least, as a teacher in a private school, I do get breaks now and then.  I can't even imagine working the kind of hours you work.  I honestly don't think I could do it.  When I get home from school in the afternoon, it's all I can do to make it in the door and collapse in my recliner.  I have to rest for a little bit, then dredge up the energy to get up and take care of all the critters that depend on me for food, water, etc., then back to my chair for another collapse.  That's basically where I stay, then, until time to go to bed, only to repeat the routine the next day.  You deserve kudos for hanging in there!!!!

     

    No, Mimi, I don't live near MDA, and it will be a long drive for me to get there.  Fortunately, I have wonderful family members who will go with me to do the driving.  I also have relatives in the Houston area, and had planned to stay with them.  However, they live north of Houston, and I've been told that it's about a two hour drive from their house to MDA, so that won't work.  So, I'll have to get a motel or hotel near MDA.  Patti, didn't the American Cancer Society help you out with lodging when you were having your infusion?  I was told that I should plan to stay in the area for 3 to 5 business days, and I honestly don't know if I can afford that, since I don't yet know how much a hotel room will cost in the area.  Good grief, I would hate to have come this far, only to have to back out because I can't afford to stay there.  Oh, woe is me, woe is me.    Is that dramatic enough?   Seriously, it might turn out to be a problem.  By the way, the doctor in charge of the clinical trial in Houston is Dr. Verstovsek (hope I spelled that right).

     

    I have another appointment with the dermatologist tomorrow.  One of the squamous cell carcinomas, which was removed some time ago, seems to have returned with a vengeance.  I'll have it checked out again.  Just hope it hasn't progressed to something more worrisome.

     

    Take care, all.  Thanks for being here!

     

    Hugs,

    Peg

  • 1,869. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Patti Registered Users
    Currently Being Moderated

    Hello Pegatha: Yes if you go to a cancer center now, you can ask to speak with the Patient Navigator there, and she will be able to help you arrange motel stay there. If you dont have that at your center, call the toll free number for "The American Cancer Society" and tell them you need help with lodging while at MDA cancer center. They also have a plan where if you needed to fly there  they may have an option for that too at no expense to you. The Patient navigator is usually in the cancer center but don't work for the hospital, they are part of the ACS. If you need any extra help call me anytime and I'll walk you through it. Hope everyone is doing ok?   Hug's to everyone, Patti

  • 1,870. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    lkbanks Registered Users
    Currently Being Moderated

    Mimi click on the Leukemia &Lymphoma Society Community and your story will be there...LindaK

  • 1,871. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    memy Registered Users
    Currently Being Moderated

    Hey LindaK!


    Thanks for the link--I found it and am pleased with it. I have forwarded to all my family and my extended bloody buddies family!.....Hope u  are faring well. Ciao bella..

  • 1,872. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Patti Registered Users
    Currently Being Moderated

    Great story Miss Mimi!!!!  Thanks for sending it to us.   Hug's, Patti

  • 1,873. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    hbneil Registered Users
    Currently Being Moderated

    Linda,  I'm exhausted just reading about your typical day.  What type of work do you do?  It sounds like you have "forced" overtime.  It there is that much work, why don't they hire more workers so the current workers aren't so stressed.  I presume that you are at least getting compensated for the overtime that you put in each week.  If you are on salary then they are certainly taking unfair advantage of their workers.  Of course, in these economic times with so many unemployed, some businesses do take advantage of their workers knowing that the workers don't want to quit because it would be very difficult to get another job.


    I feel so fortunate (and guilty) to have a job where I can take some time off in the middle of the day if I need to (Dr apt, phlebotomy, or even just a nap if I'm really exhausted).  I'm an independent contractor.  I develop automation software for Hospital business offices.  I only get paid for the hours that I bill, so I can take an hour or two off here and there and everyone is happy as long as I meet my deadlines.  Also my work is sitting at a computer writting code, not very taxing physically to begin with.


    Mimi, I finally found your article on LLS.  I enjoyed it.


    Pegatha, I hope you can get a place to stay in Houston that works out for you.  We're all interested in how the clinical trial goes.  First of all we're rooting for you, secondly, we are always hoping for new medical treatments that can give us more treatment options.


    Neil

  • 1,874. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Patti Registered Users
    Currently Being Moderated

    Pegatha, did you see my post about the ACS helping you with a hotel at no cost? They are usually pretty good about it, and it's usually a nice place too, as they are the ones who can afford to donate a room. Let me know if I can help, and if you saw the post I sent.

    Sarah and everyone who asked about Jay, he's doing very good after the surgery a week ago. He is a bit impatient so annoyed he's not bounced back in just a few days. But getting more energy and felling better everyday.  Hug's to everyone, Patti