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
xxxxxxx
Tuesday, November 23, 2010
Monday, November 8, 2010
New Trial is Underway
Hello, everyone......the last couple of weeks with no chemo has been a pleasant respite. We got to have some Halloween fun with The Cat in the Hat, a Princess and a Dinosaur....Melrose Halloween parade and Trick or Treating in West Roxbury. Alan made a special "cocktail" for the adult trick or treat companions called "The Nightmare". I did not have one...stuck to cider and candy.
We took three days last week and went to the Berkshires for our "getaway". It was a nice change of scene; the foliage was shades of gold as it faded into November. By Thursday when we left in the pouring rain, most of the leaves were gone. We stayed at our timeshare at Bentley Brook at Jiminy Peak ski area which is midpoint between Williamstown/North Adams and Lee/Stockbridge/Lenox. So we spent some time in Williamstown at one of our favorite museums, The Clark. The next day we spent in Stockbridge at the Norman Rockwell Museum, another favorite.
We arrived home in time to get gussied up for Sarah's 30th birthday party which was a fabulous event hosted by her husband Matt, who really knows how to throw a party. It was in the pentouse suite at the new Liberty Hotel ( formerly the Charles St. jail) which overlooks the Charles River. Can't believe our "baby" is 30. And even better that Carrie & Paul and Brooke and Alan were there, too.
So, we'll gloss over the rest of the week-end and the horrendous Pats/Browns game. My Patriots earrings, which have brought them good luck this year, will have to be replaced with a different pair for next week.
So, today, Monday, November 8 was the first day at Boston Medical Center and starting the new clinical trial. It seems like a long haul (and it is! Could be up to a year...), but I'm glad to get started. One day at a time! From my totally unscientific and non-medical background, it seems that the Melphalan and Revlimid (chemo drugs) are both attacking the bad plasma cells...one from the inside and one from the outside. Not sure what the steriod (Dexamethosone) is supposed to do, but I found during the last trial that it did help my energy level and appetite. Unfortunately, it also wreaks havoc with my fluid levels, especially around my lungs and heart, and legs, so the doctors need to keep a close on on the lab reports, weight gain, etc. I will also be more susceptible to blood clots and a lower immune system, so will need to skip the flying and will also need to be careful who is around me, especially this winter with flu, colds, etc. Air hugs for all!!!
I was so good at the doctors today that "Daddy Steve" got me a treat on the way home from the hospital....a vegetarian burrito from Chipotle!!!! mmmmm....I ate the whole thing! Don't know when I'll be able to eat one of those babies again! But I"ll have the memory........ :)
So, that's it from me tonight. As my friend Lisa told me, this is the "new step of my recovery" which I thought was a great way to look at it!
Thank you again for "following" this blog, keeping us in your prayers and thoughts, your cards, meals, visits and LOVE!
xxxxxxx
Cilla
We took three days last week and went to the Berkshires for our "getaway". It was a nice change of scene; the foliage was shades of gold as it faded into November. By Thursday when we left in the pouring rain, most of the leaves were gone. We stayed at our timeshare at Bentley Brook at Jiminy Peak ski area which is midpoint between Williamstown/North Adams and Lee/Stockbridge/Lenox. So we spent some time in Williamstown at one of our favorite museums, The Clark. The next day we spent in Stockbridge at the Norman Rockwell Museum, another favorite.
We arrived home in time to get gussied up for Sarah's 30th birthday party which was a fabulous event hosted by her husband Matt, who really knows how to throw a party. It was in the pentouse suite at the new Liberty Hotel ( formerly the Charles St. jail) which overlooks the Charles River. Can't believe our "baby" is 30. And even better that Carrie & Paul and Brooke and Alan were there, too.
So, we'll gloss over the rest of the week-end and the horrendous Pats/Browns game. My Patriots earrings, which have brought them good luck this year, will have to be replaced with a different pair for next week.
So, today, Monday, November 8 was the first day at Boston Medical Center and starting the new clinical trial. It seems like a long haul (and it is! Could be up to a year...), but I'm glad to get started. One day at a time! From my totally unscientific and non-medical background, it seems that the Melphalan and Revlimid (chemo drugs) are both attacking the bad plasma cells...one from the inside and one from the outside. Not sure what the steriod (Dexamethosone) is supposed to do, but I found during the last trial that it did help my energy level and appetite. Unfortunately, it also wreaks havoc with my fluid levels, especially around my lungs and heart, and legs, so the doctors need to keep a close on on the lab reports, weight gain, etc. I will also be more susceptible to blood clots and a lower immune system, so will need to skip the flying and will also need to be careful who is around me, especially this winter with flu, colds, etc. Air hugs for all!!!
I was so good at the doctors today that "Daddy Steve" got me a treat on the way home from the hospital....a vegetarian burrito from Chipotle!!!! mmmmm....I ate the whole thing! Don't know when I'll be able to eat one of those babies again! But I"ll have the memory........ :)
So, that's it from me tonight. As my friend Lisa told me, this is the "new step of my recovery" which I thought was a great way to look at it!
Thank you again for "following" this blog, keeping us in your prayers and thoughts, your cards, meals, visits and LOVE!
xxxxxxx
Cilla
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