Saturday, October 1, 2011

GOOD NEWS!

HI..it's been a long time since I updated this blog.  I have spent the last 6 weeks just getting stronger and feeling better.  Almost normal.....

I had an evaluation last Monday at BMC to see if I was OK to go on the Revlimid trial.  I actually was not looking forward to going back on the trial because the drug wreaks such havoc on my body.  I know it was a big factor in my hospitalization.  At the evaluation I had another "Kappa Light Chain" test which measures the amount of Amyloids that are in my blood.  When I started being treated at BMC a year ago May, the number was about 250.  Today it is 44 and has stayed in the range of 50 to 44 for about 5 months. ("Normal" is 20/25)

So, the doctors have declared me "Stable".....no more treatments at this time.  Just my usual meds and watching some other vitals, but mostly just being "normal".  I have started to do some short trip daytime driving and will graduate to highway and maybe night driving soon.   You might see me at the grocery store or CVS or the Christmas Tree Shop!  Steve and I really hope to take a long delayed major vacation later this month.  I still have to "take it easy" and not try to jump into my former life with both feet.  Plus, this "Stable" thing is going to be on a month by month basis.  We will go back to BMC in early November for more Kappa LIght Chain testing and other organ tests.  But for now, I am going to revel in being "Stable" and just living with this disease.

What makes me most excited about being stable is that Sarah and Matt are expecting their first baby in March and I was feeling sad and frustrated that I might not be able to help them.  But if all goes well, I will be able to be a good Nana and help with the laundry and the rocking!

Thank you everyone for your continued thoughts and prayers.  Keep them coming....Steve and I will still need them.

Love, Cilla
XXXXXX
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9 comments:

  1. AnonymousOctober 2, 2011 at 6:11 AM

    Keep up the great work on your recovery.... You can do it!

    Bob Starr

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  2. MaryBeth FinnOctober 2, 2011 at 6:46 AM

    Great News Cilla, we are really happy you are feeling better and hope you have a great trip!

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  3. AnonymousOctober 2, 2011 at 5:57 PM

    I also have AL amy and still on rev/dex. Just stay positive and the FLC numbers will follow. The amy factory is on pause. God Bless

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  4. Wendy NeeOctober 2, 2011 at 6:41 PM

    GREAT NEWS for you on a couple fronts! So happy to hear that!!! Don't overdue it and have some Fun!

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  5. Sarah WeatherbeeOctober 3, 2011 at 8:41 AM

    Who would have thought after this August you/we would get such great news...Let me know when the trip is BOOKED!!!

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  6. LinneaOctober 5, 2011 at 4:43 PM

    Some of the happiest news I've heard in a long time! I'm very excited for you. Let's do another dinner out when you feel like it.

    Love, Linnea

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  7. Barry O'BrienOctober 6, 2011 at 6:42 AM

    Congratulations, Cilla. That positive attitude and fortitude pays off! I agree with Sarah - hit the road! http://www.youtube.com/watch?v=V_w3UG6C_Mo

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  8. Cheryl Conway KurtzOctober 23, 2011 at 11:24 AM

    Yeah!! That is the best news Cilla! All of your prayers and postive attitude are paying off. I am soo happy for you and your family. I think you put it just right when you said you are learning to "live with" this disease. That is the best way to describe it. Life can go on...and you can do lots of things that you want to do...including being a great Nana! Hope you get that trip planned soon! Have a wonderful time:)
    Cheryl K

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  9. John RosenthalDecember 5, 2011 at 7:31 PM

    Awesome news Cilla! I'm so happy for you.

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