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  1. #1
    Missouri Star

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    Dec 2010
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    KY
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    Default Hi everybody! LONG POST

    Hi everybody,
    Its been along time since I have posted here. I hope you all are well and are sewing up a storm. I check in every now and then but alot has gone on since I last posted.
    I haven't been in my sewing room since December . I started getting sick about every 10-13 days . Same time,same symptoms over and over. Always at night, hard chills,spiked temp, dry heaves this went on all night then in the morning temp would be gone and I would have a major sinus headache. Me being me would carry on as normal but it kept happening over and over ( I started tracking it on my phone)13 times between Dec. and Feb. Well after a "spell" one night I got up to go to work and when I got up to leave that afternoon my hips felt like hot pokers sticking in them to the point I didn't think I would make it to my car. I went and had labs drawn and told them to draw anything and everything they could think of because something wasn't right. Came back WBC LOW and my inflammation levels were 10 times what they should be. They referred me to an oncologist He first told me I had a viral syndrome??? (Because I didn't look sick). But wanted to draw labs "one more time" "Just because" . He called me and told me he wanted me to have a bone marrow biopsy ......... So I didresults 70%of my marrow is hairy cell).......Cancer... Rare form called Hairy cell Leukemia. (1 in 5 million ppl get this) This oncologist knows nothing about it and referred me to a specialist in Nashville. We decided when I got out of school I would do a 5 day M-F chemo with an 80% chance it can put me in remission. 2 days before I got out of school my local oncologist put me on Allopurinol 300mg QD to try to keep me from getting gout after the chemo starts. Well it literally about killed me after I took it for 8 days. I was home alone. early morning and I had noticed a rash on my upper chest the night before. googled it. STOP TAKING MED IT CAN BE FATAL!! I had made my mind up to go to Dr. this morning. I got up looking like I had been scalded. My entire body was bright red. I started dry heaving. I got in the shower 7:15 and almost immediately I knew I was in trouble. It was like my heart stopped. I went down in the shower.I couldn't feel anything or hear anything. My first thought was "OMG James is going to find me dead in the tub at 30 this afternoon". I told myself don't close your eyes. I don't know how long I laid there but I was able to pull my self up and get out of the shower. This landed me in the hospital for 2 days,postponed my chemo for a week. I had my chemo June 10-14th Done great . Never once got sick. But 3 days after finishing I spent 9 days in hospital with bacterial infection. They sent me home and 2 days later I was back in hospital with sepsis. spent 2 days in CCU because my B/P got 50/30 and my heart rate was to high. Anyway I came home on July 5th and haven't been back since. I have had such a hard time because with this type cancer I was not allowed to have the neupogen (helps you build WBC) if I got it it would cause my body to make Hairy cells. 2 weeks after getting home I was stricken with severe joint pain over my entire body. I cant take anything for it because the chemo messed up my kidneys. So here I sit. I do think the pain is getting better. I still have days I can't get up from a sitting position but I will wear it out. lol. I'm not able to go back to work just yet. But I will get there eventually. I did not lose any of my hair I did not lose any weight(darn it) and I have the prettiest fingernails ever.( I was a nail biter but my nails are hard as a rock) I just do the total opposite apparently to what a normal person does after getting chemo.
    It is a chronic cancer and I will always have it. If I can go into remission I have to have my blood checked regularly to make sure it isn't coming back.
    Please pray for me that I am in remission. I go in October 8th for repeat biopsy. It takes a week and a half to get results. Other than Joint pain I feel good. I hope this chemo works for me.
    Thank you for reading.
    Rhonda

  2. #2
    Missouri Star

    Join Date
    Oct 2013
    Location
    West Viriginia
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    4,117
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    Default Re: Hi everybody! LONG POST

    Rhonda, I'm so so sorry to hear this :-( You are definitely in my prayers and will continue to be.

    Women are Angels.
    When someone
    break's our wings
    we will continue to
    fly...usually on a
    broomstick.
    We're flexible like that.
    - embroitique

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  4. #3
    Missouri Star

    Join Date
    Aug 2015
    Location
    Canada
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    3,254
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    Default Re: Hi everybody! LONG POST

    Whoa, that is quite an experience. You are certainly lucky to be alive. I will pray for you. Cancer is such a nasty visitor to the body.

    Enjoy life and do what makes you happy. Everything else will follow.

    Every day I try to do one thing that challenges my comfort zone.

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  6. #4
    Missouri Star

    Join Date
    Apr 2015
    Location
    Spring, TX
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    3,469
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    Default Re: Hi everybody! LONG POST

    Rhonda, so sorry you are having to go through this. Praying for good treatment plan going forward and remission. Will definitely keep you in my prayers.

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  8. #5
    Missouri Star

    Join Date
    Oct 2013
    Location
    Wisconsin
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    Default Re: Hi everybody! LONG POST

    OMG I am not a doctor or a nurse but how frightening! Those symptoms sound so extreme and so dangerous. I am so glad you are feeling okay (under the circumstances), and I hope your joint pain subsides soon. You have been through so much. Thanks for letting us know. Take care of yourself.

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  10. #6
    The Guild President

    Join Date
    Jan 2017
    Location
    MN
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    Default Re: Hi everybody! LONG POST

    Oh, wow, Rhonda, you have been through a lot! As a chemotherapy nurse, I have taken care of several patients with hairy cell leukemia (HCL). It can definitely be managed, if you can tolerate the side effects of the medication. You have a tremendous advantage in your positive attitude. Your outlook is critical to getting through this.

    It sounds as though your specialist is on top of things. Please feel free to PM me if I can help in any way.

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  12. #7
    Missouri Star

    Join Date
    Mar 2014
    Location
    Roseville CA
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    Default Re: Hi everybody! LONG POST

    So sorry you have to go thru this trying time. Praying
    for a speedy and complete healing. Know you can
    come to the Forum anytime for support.

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  14. #8
    Missouri Star

    Join Date
    Feb 2012
    Location
    Pittsburgh, Pennsylvania
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    Default Re: Hi everybody! LONG POST

    Rhonda, I am sending prayers for you...you have been through a lot...hang in there...
    Carol

    Sewing Mends The Soul ~ Author Unknown

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  16. #9
    Missouri Star

    Join Date
    Mar 2012
    Location
    Southwest Louisiana
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    9,990
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    Default Re: Hi everybody! LONG POST

    Hey Rhonda, it’s good to hear from you. So sorry to hear about all that you have been through. You will definitely be in my prayers too. My heart goes out to you, this has been a frightening ordeal. But I agree with MSN, your positive attitude will help you through.

    Sending a gentle hug of comfort and friendship to you.
    "I'm putting together a list of 100 reasons why I am NOT relentless!" - Sue Heck, The Middle

    Leonard: For God's sake, Sheldon, do I have to hold up a sarcasm sign every time I open my mouth?
    Sheldon (intrigued): You have a sarcasm sign?

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  18. #10
    The Guild President

    Join Date
    Feb 2018
    Location
    USA
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    569
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    Default Re: Hi everybody! LONG POST

    Oh Rhonda, i am so sorry to hear all this happened to you. You caught it though and are very strong in thought and deed. You can make it and of course you have my prayers too. Every day. Remission, remission, come on remission.
    If you get to where you feel like watching anything funny, find comedian Jeanne Robertson on Amazon utube or netflix. she is a tall older Southern woman who will make you laugh and laugh. Going to bed after a good laugh will give you a good sleep or rest. hugs to you and yours (((())))

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