Tuesday, June 21, 2011

May....a long month with a short name!

HI...well May turned out very differently from April, but now that it is June, things have turned a corner.  Early in May....around the 9th or 10th...we got the word that my white and red cell counts had taken a nose dive and I had to discontinue the trial.  No socializing, hugging, etc.  Also, no salads or fresh fruit/veggies and some other food restrictions like only well done meat (why bother if it isn't rare/medium?!).  Eventually I had to have a blood transfusion (packed red cells) for the red cell count to bounce back.  Apparently there is nothing to do for the white count except wait it out.  So, I did a lot of laying around, reading, etc.  Steve unfortunately caught a bad cold, which I caught, too.  I spent about a week in the guest room while we listened to each other hack and cough through the walls.  We both recuperated, thank goodness.

By the end of May, I was getting slightly despondent but had lots of fun stuff to look forward to in June.  We went to Casey Rex's 4th birthday party on June 4 which included a "bouncy house" for all the kids. Great party.  The next day he was christened at the United Church in Walpole (our second home ) and we were able to attend the service.  Casey handled the attention and the audience really well and waved to the congregation when he was officially baptised. People asked me later if he was going to be running for political office at some time.  You never know!!!  We followed the baptism with a ride up to Melrose to see Elizabeth dance a lovely ballet in her recital.  Another high spot in my life! 

The Monday after all this activity we went to Boston Medical Center to meet with Anthony and Dr. S. to see about getting started with a new trial.  They found something wrong with one of the cardiac lab tests and wouldn't start me on the drugs until I saw a cardiologist.  We saw Dr. Ruberg, who is the cardiologist on the Amykloid team, the following week.  He cleared me for re-starting the trial and I just started yesterday with the Dex, Melphalan and Revlimid.....in smaller doses so that I can finish out the month.  I hope so!

4 comments:

  1. Good luck with this edition of the trial. I've been thinking about you a lot.
    See you soon.

    Jackie

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  2. Hi Cilla,
    Thank God for grandkids..they do make life much better! Thinking of you and wishing you well!
    Louise Cence

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  3. Cilla, I'm glad to hear they could tweak the trial for you! Best wishes for success in June!
    Love, Laura & John

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  4. Hi Cilla and Steve,
    Thinking and praying for you daily...your strength, patience and faith are incredible! Keep up the fight Cilla...you can beat this. Baby steps will get you there.Hope to see in Sept. at the support meeting @ BU! Enjoy the rest of your summer!
    Cheryl K

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