Back on Track....

HI.  After four weeks of no chemo, I'm feeling very strong and "normal". The white cell count is up, the Kappa Light Chains are down (which I am very grateful for since I thought a month of no chemo might cause a reverse trend). Steve and I spent the afternoon at Boston Medical Center last week and got clearance to resume the clinical trial and I started TODAY with a new round of pill chemotherapy, plus steroids.  Turning in my vitals daily ("Dr. Steve" takes care of that with the blood pressure, temp and reporting weight).  IF there are any big changes, Dr. Sanchorawala takes charge and orders more or less lasix or a visit to BMC.  Otherwise, Steve manages things from here.  I have lab tests done weekly at a lab right  in Walpole.  Again, if things go awry, then it's an "easy" drive into Boston to BMC. 

This last month we took advantage of my feeling relatively good and did several dinners out with friends (always on the early side) and some fun family activities (puppet shows and bowling with Elizabeth and Charlotte) and some playtime, visits and lunch with Casey)  and their parents!  Sarah took the train out one night and we had a rousing game of Scrabble and dinner at the 204.  Steve and I have seen more movies in the last month than in the last year.....we go to the afternoon matinee/senior discount at Patriot Place and have seen "True Grit", "The Fighter" "The King's Speech" and "The Town".  So we're all set for the Oscars.....enough to make some educated decisions and enjoy The Red Carpet.  As most of you know, since you are experiencing it, too....the weather has been atrocious.  HUGE snow mounds everywhere.  We are SO happy to be living in a condo where someone else does all the shoveling and plowing.  Even an extra assessment will be worth it.  We made a deal with a friend who drove to Florida last week to use her garage for the month of February, so the second car can stay dry and out of our driveway to let the plow guy do his work.

So....I got sidetracked.  The fight against Amyloidosis is going well.  I'm not quite so bummed about not qualifying for the stem cell transplant since the long process seems to be working, too.  I have great HOPE that by spring we'll have more good Kappa Light Chain results and maybe can plan some vacations and whether I can go back to work at some point.  Life is good!

Love, Cilla
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Holidays 2010

Hello, everyone.

We had a bit of a hectic Christmas week-end.  All the grandchildren hd various ailments (pneumonia, Ear infections, stomach bug....) so we ended up with a split celebration with me wearing a mask and having to sit at least three feet away from anyone.  Some healthy and recovering family members spent Christmas Day at Alan and Brooke's house.  They put on a delicious buffet and a good time!  The other members of the family came to our house on Sunday. So we got to see everyone, but not everyone saw each other.......So next week-end, we are going to try again for an all-family get together, as long as everyone is healthy and we don't have another blizzard!

The Monday after Christmas I got a call from Anthony, the nurse in charge of my Clinical trial at Boston Medical Center.  He said my white cell count was extraordinarily low ( a common side effect of the treatment I am receiving).  He told me to discontinue the remainder of the clinical trial drugs (Revlimid and Dexamethosone) until the count went up.  Also the mask is now standard gear if I am around the grandkids or anyone, really.....Only air kisses and air hugs allowed.  We'll check in tomorrow (Jan. 3) to see what the next move is.

Hope everyone had a fun New Year's weekend.  I was NOT sorry to see 2010 in the rear view mirror. Looking forward to a healthy and happy 2011 for all!  (Oh, and let's not forget the Patriots!  Go Pats....all the way to Dallas!)

Steve sends greetings!  And special thanks for all of our Christmas cards, treats and meals.  We couldn't do this without such support. 

Love, Cilla