Hello, everyone! This is just an update on the first two weeks of the clinical trial. So far, so good! Supposedly, I'm going to "crash" with some fatigue, etc. over the next couple of weeks, but at this point I have a good energy level (not my normal "HIGH" energy, but better than the Velcade chemo from June through October. ). We've done a lot more social activities....Games Night, a trip to the Museum of Fine Arts new Art of the Americas Wing (A must see!!), some nice lunches and suppers at friend's houses and I even accompanied Steve to the Stop and Shop. Once!
We had a long but productive afternoon yesterday at the Amyloid Center at BU/BMC. Lab work, a chest x-ray (fluid is better), and a meeting with all of the "big guns"....Kathy Finn and Anthony Shelton, the clinical trials directors; Dr. Sanchorawala, my hemotolgist/Amyloid specialist; and another doctor from Europe (Spain, Italy??) who is followng Dr. S. around to learn about the latest Amyloid treatment. They are brilliant and caring people...I feel very lucky to be in such good hands. They are keeping a close watch on me..Steve emails my blood pressure, etc. to them daily and they all chime in via email with suggestions for medication, etc. We go back to BMC on Monday for another round.
Hope everyone has a great Thanksgiving! Our kids are spending the holiday with their in-laws and we are having dinner (and watching the Pats game) at our friend Pat Barylick's house right across the street. We get the family back at Christmas!
Our church continues to be a wonderful source of help and caring. People bring meals twice a week and we keep in touch with visits, emails, etc. We hope to get back to worship very soon...especially with the Advent season. Love it!!!
That's it for today! Love to read your comments. Thanks for "following" me.....Steve says HI, too!
Cilla
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Things sound better than ever. I am very optimistic about this trial. Have a great Thanksgiving. We are thankful for you.
ReplyDeleteJackie and Steve
Cilla,
ReplyDeleteYour update sounds SO encouraging. Good news.
The only issue with not having Thanksgiving at home is that you have to arrange for Pat Barylick to deliver you and Steve Turkey Sandwiches with cranberry sauce, etc. Friday for lunch! That's an important part of Thanksgiving!
We are also without our kids - Peter is staying in Boulder (The Boulder, Co Pat's fans congregate in his bar!) and Kaitlin is having Thanksgiving with her boyfriend Michael's Family. We are heading down to RI for Thnaksgiving to join a couple of families of Friends.
May you and Steve have an enjoyable Thanksgiving, and Go Pats!
Glad you are feeling stronger. Have a wonderful Thanksgiving.
ReplyDeleteBob
Cilla,
ReplyDeleteSo wonderful to hear that things are going well for you. We are loving Williamsburg, but still miss United Church. Happy Thanksgiving!
Love, D & D
The turkey is thawing and the fryer is out of the basement. The Johnston's aren't arriving until late afternoon so Sarah will be Jim's 'wing man'. We will make sure the Pats game is on. We look forward to talking to you on Thursday and keeping you posted on the progress of the bird!
ReplyDeleteLove, Liz & Jim
Thanks Liz!
ReplyDeleteSteve
Hi Cilla and Steve,
ReplyDeleteSo good to see you update and that the trial is going well so far. I hope your energy level has remained good and that preparations for Christmas are going well. The Outreach committee continues to miss you and soon we'll be missing Jon Ahola as he and Rebecca relocate to the midwest. Casey's Giving Tree is up and running and we had our allocation meeting last week.
Thank you again for your donation for the fleece. We got some wonderful pictures of the kids wearing them, which Julie will be posting and we'll get on the website.
Hope to see you soon ! Sending you prayers of strength and healing.
Love, Jill