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!
Tuesday, June 21, 2011
Tuesday, May 3, 2011
Excellent April
Hello, everyone. I am pleased to report that the 5th Cycle of my treatment during the month of April went off just fine. The dose of the experimental drug (Revlimid) was decreased and that helped keep my blood counts up and things moving along. As far as Amyloid "numbers" go, I am in a plateau and I will probably continue this treatment up through October or November. So by reducing the drug amount, it is lengthening the time of treatment. On the other hand, I was able to complete the entire cycle and felt pretty good all month.
I got to spend quite a bit of time with the kids, other friends and relatives, and Steve. We even went out one night to the Amazing Things Art Center in Framingham with my brother John and his wife, Laura. We saw Jim Kweskin who was one of my folk heros from the Cambridge scene in the 60's. (Does anyone else remember Jim Kweskin and the Jug Band??? Probably not! :) ) Didn't get home until 11:30pm which is VERY late for me these days!
 |
| Steve & I out celebrating- 42 years & counting! |
We celebrated our 42nd wedding anniversary and had a very nice evening out for an early dinner at Sky Restaurant. This last year was definetly a test of the marriage vows (in sickness and in health) and Steve has passed with flying colors!
Easter Sunday was a perfect day! We went to church (I worshiped for the first time in months and months). Beautiful inspirational service and I had a wonderful surprise when Carrie, Paul and the girls came down from Melrose to join Sarah and Matt, and Brooke, Alan and Casey. We all squeezed into one pew and it was so heartening to look down and see my whole family in church with us. The other part of the surprise was the Easter Hats all my girls were wearing, plus lots of other women in the church. I am known for always wearing a big Easter "bonnet", so this was all done in my honor! Very emotional morning. Here are some of the fabulous ladies at United Church:
I just finished a five day "respite" with no experimental drugs and just started Cycle VI yesterday, May 2. So far, so good! So keep the prayers coming that this month continues in the same positive manner that April did!
xxxxxxx
Cilla
Sunday, April 3, 2011
The March of Time
HI, everybody.....After my incredibly positive posting for February, I am bummed to report that March wasn't so great after all. It felt like two steps forward and one step back.
I started Cycle 4 of the clinical trial and had to stop the second week of March (about 9 days in) due to a precipitous drop in platelets and red blood cells. I was incredibly tired and weak...spent one day from 2 pm in the afternoon until 8 AM the next day asleep! I ended up going in to BMC. We thought that I was going to have to have a blood transfusion but instead the medical team opted to give me a medication called "Procrit" which boosts red cells. I was supposed to wear a mask if I went out due to lowered immunity and I had to be careful what I ate (no salads, fresh fruit, rare meat, etc.) After about a week, I was feeling less tired and we actually went to some friends for supper. As I got to feeling better, we had some lunches with pals and socialized a bit more. Still, nothing like February. And I'm still not driving.......
We went back to BMC earlier this week for another shot of Procrit. The white and red blood cell counts improved and I got the word that I can start another round of the clinical trial starting tomorrrow. Good News!
Last night all the kids and grandkids came over and we had a riotous game of Mad LIbs and just hung out. Had an early dinner at Jalepenos Mexican restaurant in Walpole and had a blast. Sarah and Matt had a birthday cake for the March and April birthdays (Brooke, Carrie, and Steve). So we did the famous Weatherbee "Happy Birthday" song....it's "famous" because no one has a good singing voice in our family (sorry, kids!) so it always sounds dirge-like. Great food and a good time. It felt good to be out and about and ready for another round of chemo!
Even though we had a coating of snow on April 1st, it feels like spring is here. Our crocuses are up and are a pretty contrast against the Christmas lights that are still entwined in the front bushes. I think we can untangle those tomorrow and put them away. :)
Thank you to all my family and friends who came to do "Cilla Care" while Steve had to work in March. The meals from our church family continue twice a week and are incredibly helpful.
Wish me luck for April! I hope to do a full round of the Clinical Trial and have some good numbers to show for it by early May.
xxxxxxxxxxxx
Cilla
I started Cycle 4 of the clinical trial and had to stop the second week of March (about 9 days in) due to a precipitous drop in platelets and red blood cells. I was incredibly tired and weak...spent one day from 2 pm in the afternoon until 8 AM the next day asleep! I ended up going in to BMC. We thought that I was going to have to have a blood transfusion but instead the medical team opted to give me a medication called "Procrit" which boosts red cells. I was supposed to wear a mask if I went out due to lowered immunity and I had to be careful what I ate (no salads, fresh fruit, rare meat, etc.) After about a week, I was feeling less tired and we actually went to some friends for supper. As I got to feeling better, we had some lunches with pals and socialized a bit more. Still, nothing like February. And I'm still not driving.......
We went back to BMC earlier this week for another shot of Procrit. The white and red blood cell counts improved and I got the word that I can start another round of the clinical trial starting tomorrrow. Good News!
Last night all the kids and grandkids came over and we had a riotous game of Mad LIbs and just hung out. Had an early dinner at Jalepenos Mexican restaurant in Walpole and had a blast. Sarah and Matt had a birthday cake for the March and April birthdays (Brooke, Carrie, and Steve). So we did the famous Weatherbee "Happy Birthday" song....it's "famous" because no one has a good singing voice in our family (sorry, kids!) so it always sounds dirge-like. Great food and a good time. It felt good to be out and about and ready for another round of chemo!
Even though we had a coating of snow on April 1st, it feels like spring is here. Our crocuses are up and are a pretty contrast against the Christmas lights that are still entwined in the front bushes. I think we can untangle those tomorrow and put them away. :)
Thank you to all my family and friends who came to do "Cilla Care" while Steve had to work in March. The meals from our church family continue twice a week and are incredibly helpful.
Wish me luck for April! I hope to do a full round of the Clinical Trial and have some good numbers to show for it by early May.
xxxxxxxxxxxx
Cilla
Monday, March 7, 2011
February: A short Month
Hello, everyone.
Finished another cycle of the clinical trial. Actually felt pretty good most of the month. We were able to enjoy some social events...lunches and early suppers with pals, plus a couple of "mind expanding" functions like our church Games Night and a very interesting forum at the JFK library about Theodore Roosevelt. Who knew ol' Teddy could be so interesting?
We also had a fun bowling morning with the whole family at "Lanes and Games" in Cambridge. Most of us hadn't bowled in years....since it's New England-style "candlepin", everyone did just fine, including the little ones. A lot of laughs.
I"ve also been doing a lot of knitting. The kids have dubbed our house "The Hat Factory". Hats are easy to do and keep me engaged. Everyone in the family has a knitted hat by me and some are into their second. I have an incomplete kid's sweater I gave up on last summer, so I think I need to focus on that and "finish what I started". Since I got new glasses last week (my eysight had really deteriorated over the last few months....chemo related), I can see to knit a lot better and can now do some daytime, short trip driving. Steve wants to take me out for some practice first....I haven't been behind the wheel since last June. Watch out, Walpolians!!!
As we got to the end of the month, I had a short "break" from all the chemo pills and headed to Boston Medical Center for an evaluation. Turned out to be the usual day-long visit with a chest x-ray (fluid on the lungs is better), an echo-cardiagram, lots of lab tests (one "abnormal result",) and a good meeting with Dr. Sanchorawala and Anthony Shelton. My amyloid numbers (Kappa Light Chains) were down, but just a bit...2 points. Hard to feel excited, but "down" is always good!
We also attended the Support Group meeting. We met several people from around Massachusetts, plus a lovely woman from North Carolina who had never flown before or been to Boston (she was freezing!), but had been referred by her doctor , and a couple from Maine. She had had a stem cell transplant about a year and a half ago, and was feeling good and back to work. Two people (The lady from North Carolina and a man from Lowell) had just been diagnosed and were there for the first time. It was a really good meeting.
Back to the abnormal test result, I had to go back to BMC for a specialized test having to do with natural steroids in my system. After the test (and a IV shot of additional steroids), all is well. I was able to start the next clinical trial cycle on schedule on February 28th. So it's been underway for about a week.....other than feeling tired and having big naps in my yellow chair in the afternoon....I"m doing fine. I actually made Chocolate chip cookies last night (first time in MONTHS). I needed some help from Steve....stirring the dough, etc...but they came out great.
So, as we head into the "longest month".....a lot of snow has melted, the brook in the backyard is flowing nicely and the sun is out. I predict at least one more snowstorm, but spring is definitely on its way.
Keep the positive comments coming...I love to hear from my "followers". :) XXXXX
Finished another cycle of the clinical trial. Actually felt pretty good most of the month. We were able to enjoy some social events...lunches and early suppers with pals, plus a couple of "mind expanding" functions like our church Games Night and a very interesting forum at the JFK library about Theodore Roosevelt. Who knew ol' Teddy could be so interesting?
We also had a fun bowling morning with the whole family at "Lanes and Games" in Cambridge. Most of us hadn't bowled in years....since it's New England-style "candlepin", everyone did just fine, including the little ones. A lot of laughs.
I"ve also been doing a lot of knitting. The kids have dubbed our house "The Hat Factory". Hats are easy to do and keep me engaged. Everyone in the family has a knitted hat by me and some are into their second. I have an incomplete kid's sweater I gave up on last summer, so I think I need to focus on that and "finish what I started". Since I got new glasses last week (my eysight had really deteriorated over the last few months....chemo related), I can see to knit a lot better and can now do some daytime, short trip driving. Steve wants to take me out for some practice first....I haven't been behind the wheel since last June. Watch out, Walpolians!!!
As we got to the end of the month, I had a short "break" from all the chemo pills and headed to Boston Medical Center for an evaluation. Turned out to be the usual day-long visit with a chest x-ray (fluid on the lungs is better), an echo-cardiagram, lots of lab tests (one "abnormal result",) and a good meeting with Dr. Sanchorawala and Anthony Shelton. My amyloid numbers (Kappa Light Chains) were down, but just a bit...2 points. Hard to feel excited, but "down" is always good!
We also attended the Support Group meeting. We met several people from around Massachusetts, plus a lovely woman from North Carolina who had never flown before or been to Boston (she was freezing!), but had been referred by her doctor , and a couple from Maine. She had had a stem cell transplant about a year and a half ago, and was feeling good and back to work. Two people (The lady from North Carolina and a man from Lowell) had just been diagnosed and were there for the first time. It was a really good meeting.
Back to the abnormal test result, I had to go back to BMC for a specialized test having to do with natural steroids in my system. After the test (and a IV shot of additional steroids), all is well. I was able to start the next clinical trial cycle on schedule on February 28th. So it's been underway for about a week.....other than feeling tired and having big naps in my yellow chair in the afternoon....I"m doing fine. I actually made Chocolate chip cookies last night (first time in MONTHS). I needed some help from Steve....stirring the dough, etc...but they came out great.
So, as we head into the "longest month".....a lot of snow has melted, the brook in the backyard is flowing nicely and the sun is out. I predict at least one more snowstorm, but spring is definitely on its way.
Keep the positive comments coming...I love to hear from my "followers". :) XXXXX
Monday, January 31, 2011
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
xxxxxxxxx
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
xxxxxxxxx
Sunday, January 2, 2011
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
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
Thursday, December 16, 2010
It's beginning to look a lot like Christmas......
Hello, everyone. It's time for an update........The last month has had it's ups and downs. The new chemo regimen has been OK. The steroids help keep my appetite up and have given me a bit more energy. On the other hand, the "Dex" creates a lot of extra fluid around my lungs and causes swelling. So, I'm back to having a cough and wheezing. But the doctors are monitoring me daily; Steve sends my "vitals" to them via email every morning. Drugs are adjusted daily. Steve keeps track of all the prescriptions (at least 19 per day! ) and has a detailed medication chart (created by our daughter in law Brooke) that we use.
We've got our Christmas tree and Dickens Village up and decorated, thanks to Alan, Matt and Sarah. I've ordered most of our Christmas gifts on-line. Janet Robinson took me to the Walpole Mall today for my final shopping trip. We used the wheelchair and it truly is a blessing. I always resist using it; Steve insists and he is always right! So, now I need to wrap, and maybe get some cards out. We'll see......
The French family (Weatherbees, etc.) Family Christmas party is this Saturday. We're up to about 50 people just in the "immediate" family...there has been a baby birth explosion over the last couple of years. We rent a hall so the kids can run wild. Santa comes, too. It's a gathering I've been looking forward to for weeks! I'm sure I'll come home and take a nap after....
At the end of this cycle in late December, the doctors will be taking a Kappa Light Chain blood test to see if there has been any change in the Amyloidosis. I hope so! Please say a prayer...
I"ll send an update in early 2011. In the meantime, I hope you all enjoy a Merry Christmas and a Happy New Year.
Cilla
xxxxx
We've got our Christmas tree and Dickens Village up and decorated, thanks to Alan, Matt and Sarah. I've ordered most of our Christmas gifts on-line. Janet Robinson took me to the Walpole Mall today for my final shopping trip. We used the wheelchair and it truly is a blessing. I always resist using it; Steve insists and he is always right! So, now I need to wrap, and maybe get some cards out. We'll see......
The French family (Weatherbees, etc.) Family Christmas party is this Saturday. We're up to about 50 people just in the "immediate" family...there has been a baby birth explosion over the last couple of years. We rent a hall so the kids can run wild. Santa comes, too. It's a gathering I've been looking forward to for weeks! I'm sure I'll come home and take a nap after....
At the end of this cycle in late December, the doctors will be taking a Kappa Light Chain blood test to see if there has been any change in the Amyloidosis. I hope so! Please say a prayer...
I"ll send an update in early 2011. In the meantime, I hope you all enjoy a Merry Christmas and a Happy New Year.
Cilla
xxxxx
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