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
Thursday, December 16, 2010
Tuesday, November 23, 2010
Two weeks in....
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
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
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
Saturday, October 30, 2010
The Next Phase....New Clinical Trial
Hello, everyone!
Last week was very busy at the BU Amyloid Center. I had three days of examinations, tests, and discussions. The final word is that the Velcade chemo treatments I've been doing for the last five months have put a big dent in the amyloid but haven't knocked it out. So without further treatment, the disease will get worse.
The doctors had a meeting on Friday to discuss my exam and lab results and have decided that I am eligible for another clinical trial. If anyone wants to look it up, it's H26320-Phase II Trial of MRD (Melphalan, Revlimid and Dexamethasone). The trial will require a monthly trip to BMC, plus weekly lab tests. It runs on a 28 day cycle and the chemo is in pill form. If I agree to be in the study, (which I do!), it is a year's duration. There are tons of probable side effects, but I should have a week or so each month when I feel pretty good and a couple of weeks of general fatigue and tiredness. The Melphalan, in particular, is a very strong drug, but I will be recieving low doses over a long period of time instead of a high dose "whack upside the head". This trial is like a marathon rather than a sprint.
I"m starting on November 8, so I"ll be able to have a good time at Sarah's 30th birthday party on the 5th. We had hoped to take some kind of a vacation this week, but flying is still problematical. Not to disparage the month of November, but there's no place really exciting we feel like driving to.....we may just do a "staycation" and do some movies, plays and museums right in the Boston area and eat out a lot! :) Will report later on our decision.....
OK....gotta run. We did our annual winter/summer clothes swap and I found out that everything is just too darm BIG!!!! So, we're going to do a little clothes shopping this afternoon. :)
Kisses and hugs to all! and "Go, Pats" against the Vikings tomorrow. I hope it's a Treat and not a Trick.
Cilla xxxxxxxxx
Last week was very busy at the BU Amyloid Center. I had three days of examinations, tests, and discussions. The final word is that the Velcade chemo treatments I've been doing for the last five months have put a big dent in the amyloid but haven't knocked it out. So without further treatment, the disease will get worse.
The doctors had a meeting on Friday to discuss my exam and lab results and have decided that I am eligible for another clinical trial. If anyone wants to look it up, it's H26320-Phase II Trial of MRD (Melphalan, Revlimid and Dexamethasone). The trial will require a monthly trip to BMC, plus weekly lab tests. It runs on a 28 day cycle and the chemo is in pill form. If I agree to be in the study, (which I do!), it is a year's duration. There are tons of probable side effects, but I should have a week or so each month when I feel pretty good and a couple of weeks of general fatigue and tiredness. The Melphalan, in particular, is a very strong drug, but I will be recieving low doses over a long period of time instead of a high dose "whack upside the head". This trial is like a marathon rather than a sprint.
I"m starting on November 8, so I"ll be able to have a good time at Sarah's 30th birthday party on the 5th. We had hoped to take some kind of a vacation this week, but flying is still problematical. Not to disparage the month of November, but there's no place really exciting we feel like driving to.....we may just do a "staycation" and do some movies, plays and museums right in the Boston area and eat out a lot! :) Will report later on our decision.....
OK....gotta run. We did our annual winter/summer clothes swap and I found out that everything is just too darm BIG!!!! So, we're going to do a little clothes shopping this afternoon. :)
Kisses and hugs to all! and "Go, Pats" against the Vikings tomorrow. I hope it's a Treat and not a Trick.
Cilla xxxxxxxxx
Wednesday, October 20, 2010
The end of the "cycle"
HI, everyone.....
Today was the end of a five month chemo cycle to see if Velcade (the chemotherapy drug) and Dexamethosone (the steroid) would "cure" or put me into remission for Amyloid. Unfortunately, the latest "Kappa Light Chain" blood test didn't show any change from the last time or for basically the last six or eight weeks. So, the good side is that it's "stable"; bad side is the doctors need to come up with another idea or two for treatment.
Next week I will be going to Boston Medical Center for three days in a row (M-T-W) for a reavaluation. The tests will be basically what they did during my first three day visit last May: Bone Marrow Biopsy, a flood of urine tests, pulmonary tests to see what my lung capacity is, echocardiagram, and probably others I can't remember now. The doctors will then gather all this info and meet together on Friday afternoon. I will hope to get the results sometime on Friday; if not, it will be Monday.
So, if they decide to give me "a break", then Steve and I will try to plan a last minute vacation someplace....it will depend on whether I am allowed to travel by air or by land. Any ideas, anyone??? Someplace warm would be my first choice. That would be tough if I have flying restrictions. :)
Yesterday was a really wonderful day. I was invited to lunch by a couple of people from my RE/Max office and it turned out to be about 25 brokers from three different offices!! They all came to say how much they missed me and to wish me well. It was overwhelming....... my "pals". I do miss them. I work with the best Realtors in the area and the fact that they would take two hours out of very busy days to come and say HI really meant a lot to me. I got home about 2 and went to bed and slept until 6!!! Steve and I then caught up with the final episode of "Mad Men" which I could talk and talk about, but I won't. If anyone wants to dish with me about what the heck Don Draper is possibly thinking, send me an email........And we dislike Betty even more! :)
OK, when I know my next treatment options, you will be the first to know. Keep the prayers and good thoughts coming. I will need them for sure.
xxxxxxxxxxx
Cilla
Today was the end of a five month chemo cycle to see if Velcade (the chemotherapy drug) and Dexamethosone (the steroid) would "cure" or put me into remission for Amyloid. Unfortunately, the latest "Kappa Light Chain" blood test didn't show any change from the last time or for basically the last six or eight weeks. So, the good side is that it's "stable"; bad side is the doctors need to come up with another idea or two for treatment.
Next week I will be going to Boston Medical Center for three days in a row (M-T-W) for a reavaluation. The tests will be basically what they did during my first three day visit last May: Bone Marrow Biopsy, a flood of urine tests, pulmonary tests to see what my lung capacity is, echocardiagram, and probably others I can't remember now. The doctors will then gather all this info and meet together on Friday afternoon. I will hope to get the results sometime on Friday; if not, it will be Monday.
So, if they decide to give me "a break", then Steve and I will try to plan a last minute vacation someplace....it will depend on whether I am allowed to travel by air or by land. Any ideas, anyone??? Someplace warm would be my first choice. That would be tough if I have flying restrictions. :)
Yesterday was a really wonderful day. I was invited to lunch by a couple of people from my RE/Max office and it turned out to be about 25 brokers from three different offices!! They all came to say how much they missed me and to wish me well. It was overwhelming....... my "pals". I do miss them. I work with the best Realtors in the area and the fact that they would take two hours out of very busy days to come and say HI really meant a lot to me. I got home about 2 and went to bed and slept until 6!!! Steve and I then caught up with the final episode of "Mad Men" which I could talk and talk about, but I won't. If anyone wants to dish with me about what the heck Don Draper is possibly thinking, send me an email........And we dislike Betty even more! :)
OK, when I know my next treatment options, you will be the first to know. Keep the prayers and good thoughts coming. I will need them for sure.
xxxxxxxxxxx
Cilla
Thursday, October 14, 2010
More Information
HI...Yesterday was another "lost week-end" at the Boston Medical Center, but we did leave with some good information. We had an early apppointment which meant we found a perfect parking space right away, didn't have to wait long in the reception area and got one of the nice rooms in the stem cell area. Blood work done in a timely manner, Steve went to Dunky's and brought back a breakfast sandwich and tea for me.....which was fortuitous since the hospital food we were offered later was gross. Steve splurged and had TWO donuts and coffee. Anyway, the rest of the morning went smoothly and we were DONE by about 11:30......except that an appointment had been made for us to see Dr. Berks the pulmonologist (lung guy) at 2:30. So we hung out and waited. I remarked that he'd probably want me to get an x-ray, and sure enough, after he arrived at 3:30 and spent about an hour with us....he really is a good guy.....we were then sent off for a chest x-ray. The results showed that there is more fluid on my lungs than the doctors had realized...which accounts for the horrendous cough, wheezing and shortness of breath I've experienced over the last six weeks or so. So, extra lasix for me and I"ll be seeing Dr. Berks again soon! :) When we finally got out of there around 5, we despaired about the traffic on the Expressway. However, we used the HOV lane down to the split and just narrowly avoided an accident scene and were home in less than 40 minutes....a world record, I believe!
So.....one more treatment in this cycle, then the 3 day evaluation (including a bone marrow biopsy) and then "We'll see", as my father used to say!
I have lots to look forward to over the next few weeks.....Pats game on Sunday, Halloween with the grandchildren, and by early November (Sarah's 30th birthday) I hope to have good news and a plan of action.
Thanks again, everyone, for your continued thoughts, prayers, delicious suppers and snacks, cards, etc. Last Sunday afternoon we drove up to Rockport and Gloucester for an Artisans Tour. We saw some great pottery, paintings and incredible North Shore ocean views. Good for the soul. The Labyrinth Walk at church last Sunday night was a wonderful treat for the soul,too. Looking forward to the healing services starting next Monday, the 18th. Come on down! All these experiences I savor in my heart every day as I continue my R&R at home and wait for life to get back to "normal"!
Love, Cilla xxxxxxxx
So.....one more treatment in this cycle, then the 3 day evaluation (including a bone marrow biopsy) and then "We'll see", as my father used to say!
I have lots to look forward to over the next few weeks.....Pats game on Sunday, Halloween with the grandchildren, and by early November (Sarah's 30th birthday) I hope to have good news and a plan of action.
Thanks again, everyone, for your continued thoughts, prayers, delicious suppers and snacks, cards, etc. Last Sunday afternoon we drove up to Rockport and Gloucester for an Artisans Tour. We saw some great pottery, paintings and incredible North Shore ocean views. Good for the soul. The Labyrinth Walk at church last Sunday night was a wonderful treat for the soul,too. Looking forward to the healing services starting next Monday, the 18th. Come on down! All these experiences I savor in my heart every day as I continue my R&R at home and wait for life to get back to "normal"!
Love, Cilla xxxxxxxx
Thursday, October 7, 2010
Uneventful Wednesday
HI...Nothing exciting to report. Regular chemo treatment with a long wait in the waiting room beforehand. Luckily, by waiting, we got a nice quiet single room in the stem cell transplant area...bliss! Next week we have an earlier appointment, so hopefully that will take care of the long waiting times. So, two more treatments to go, then the evaluation. I am a little nervous and bummed that after five months, even though the "numbers" are down, there's no remission. I know the doctors will come up with a plan.....stay tuned!
Love to all who keep in touch. I can feel your prayers and good thoughts!!!
Love, Cilla
Love to all who keep in touch. I can feel your prayers and good thoughts!!!
Love, Cilla
Wednesday, September 29, 2010
Wednesday Warrior!!!
Today Cilla had her weekly "Velcade" (chemotherapy) and "Dex" (steroid) treatment and was accompanied by her friend, the lovely Brenda Stewart (thank you Brenda!!).
I was fortunate to join the two ladies for an extended lunch break and got to spend some "QT" in the BU Medical Center chemo treatment ward. We gossiped (exactly how many twins are there on Arrowhead Lane in Walpole??), talked business & current events (where is all the Haitian aid money? What's with all these blogger's making movies & millions and how can we do that???), and had tasty (if not messy) sandwiches from Blunch...Try the "Cilla" next time you are in there- cheddar cheese, artichokes, roasted red peppers & tomato panini with extra, extra napkins!
Medical recap based on our visit from "Dr. S.":
 |
| Brenda & Cilla hangin' out at BU |
I was fortunate to join the two ladies for an extended lunch break and got to spend some "QT" in the BU Medical Center chemo treatment ward. We gossiped (exactly how many twins are there on Arrowhead Lane in Walpole??), talked business & current events (where is all the Haitian aid money? What's with all these blogger's making movies & millions and how can we do that???), and had tasty (if not messy) sandwiches from Blunch...Try the "Cilla" next time you are in there- cheddar cheese, artichokes, roasted red peppers & tomato panini with extra, extra napkins!
Medical recap based on our visit from "Dr. S.":
- Cilla has recently been experiencing some pretty significant coughing and wheezing fits. Dr. S. said the wheezing/coughing and evidence of fluid increase over the last week or so is definitely related to being on the "Dex" now for 4 weeks. She reduced the Dex (steroid) down to an "8" for today (last week was 10, she used to be on a 20 back in May/June) to hopefully help with the wheezing & coughing.
- The "tingling" in Cilla's hands & feet is also a direct result of being on the Velcade for as long as she has, however, there is nothing she can do unless she lessens the Velcade which Cilla does NOT want to happen. Cilla made it clear to Dr. S. that she will take the dose "as is!" despite these annoying (and sleep depriving) side-effects.
- Dr. S said Cilla is STRONG and doesn't complain and that she "is doing very, very well"!
- Dr. S. said Mom could probably fly somewhere or "take a break" soon...but TBD
- Dr. S sends her support to all, especially to "Mr. Weatherbee" who had to work today...I think she might have a little crush...but who doesn't love Steve??? :-)
- Chemo will continue to be every Wednesday until October 20th (Oct. 6th, 13th & 20th).
- Cilla will undergo a three-day evaluation in the BU Amyloid Research Center beginning on Oct. 25th...hopefully she'll get to spend some time with the "cute" clinical Dr. that Janet Robinson & Cilla liked so much. :-)
- On Friday October 29th, the "Amyloid Team" will do their weekly amyloid patient assessment meeting and determine the next path for Cilla. It could be more chemo, it could be a break, it could be a Stem Cell treatment...we are not sure yet so stay tuned!!!
 |
| Love to all & thanks for reading! -Sarah |
Wednesday, September 22, 2010
Hello all,
As promised I'm posting a medical update on Cilla. As they might say say in the newsroom, today was a slow news day. We zipped in to the Boston Medical Center this morning courtesy of the hardly used HOV lane on the Southeast Expressway (Boston drivers are averse to ride sharing), then found a spot in the hospital front entrance Handicapped lot (not always the case), and got up to the waiting room around 10:20 for our 10:30 appointment. Then we had to wait for over an hour to get a bed and cubicle for Cilla. There's too many sick people these days! Next to Cilla's cubicle was an 82 year old man who appeared to be delerious, alternately singing "Take me out the the ballgame" and crying out for a sandwich. Today we didn't have a visit from our doctor and they just drew blood for Cilla's weekly lab tests. Everything seems to be about the same.
I'll let you know if anything "newsworthy" comes up. In the meantime, thank you all for your conitinued love and support.
Steve
As promised I'm posting a medical update on Cilla. As they might say say in the newsroom, today was a slow news day. We zipped in to the Boston Medical Center this morning courtesy of the hardly used HOV lane on the Southeast Expressway (Boston drivers are averse to ride sharing), then found a spot in the hospital front entrance Handicapped lot (not always the case), and got up to the waiting room around 10:20 for our 10:30 appointment. Then we had to wait for over an hour to get a bed and cubicle for Cilla. There's too many sick people these days! Next to Cilla's cubicle was an 82 year old man who appeared to be delerious, alternately singing "Take me out the the ballgame" and crying out for a sandwich. Today we didn't have a visit from our doctor and they just drew blood for Cilla's weekly lab tests. Everything seems to be about the same.
I'll let you know if anything "newsworthy" comes up. In the meantime, thank you all for your conitinued love and support.
Steve
Tuesday, September 14, 2010
A Beautiful Day!
HI, all.....Today was such a nice day! Brooke and Casey Rex came by for lunch (and brought some for us!) and we all ate outside on the deck. After they headed home, we decided to take our maiden voyage in the wheelchair lent to us by John and Shirley Lilly. I have been fighting the idea of using/needing a wheelchair, but it was time to give it a whirl.
So, Steve and I went to the Walpole Mall to go birthday present shopping for Charlotte at Barnes and Noble. We had a tough time getting through the big double doors (try being a "disabled person" once in a while and you will see it is not that easy to get around!), but luckily some people came along and held the doors open for us. The B&N salespeople had to move a few items around so I could get closer to the shelves to check out the stuff. THEN, on the way out, I lost control and smacked into a display shelf of audio books.....everything came tumbling down, including the shelf. So embarrassing! :) Steve picked up all the merchandise, but we left the shelf for someone else to fix. A store employee and a customer held the doors open for us for a speedy getaway........
After really resisting the idea of "succumbing" to a wheelchair, I have to admit that even with the problems we ran into, the wheelchair helped me stay a lot longer at the mall and enjoy the day. So, hopefully I"ll only need it until the end of chemo and then be able to stay on my feet longer.
We ended the day at our usual haunt, the 204 Washington, and I'm ready for a new round of chemo tomorrow.
Thanks again to everyone for your prayers and support! xxxxxxxx Cilla
So, Steve and I went to the Walpole Mall to go birthday present shopping for Charlotte at Barnes and Noble. We had a tough time getting through the big double doors (try being a "disabled person" once in a while and you will see it is not that easy to get around!), but luckily some people came along and held the doors open for us. The B&N salespeople had to move a few items around so I could get closer to the shelves to check out the stuff. THEN, on the way out, I lost control and smacked into a display shelf of audio books.....everything came tumbling down, including the shelf. So embarrassing! :) Steve picked up all the merchandise, but we left the shelf for someone else to fix. A store employee and a customer held the doors open for us for a speedy getaway........
After really resisting the idea of "succumbing" to a wheelchair, I have to admit that even with the problems we ran into, the wheelchair helped me stay a lot longer at the mall and enjoy the day. So, hopefully I"ll only need it until the end of chemo and then be able to stay on my feet longer.
We ended the day at our usual haunt, the 204 Washington, and I'm ready for a new round of chemo tomorrow.
Thanks again to everyone for your prayers and support! xxxxxxxx Cilla
Saturday, September 11, 2010
Wednesday, September 8, 2010
Good report today
Hello all,
We went to BU Medical Center today for Cilla's weekly treatment and got some good news from the doctor. Cilla's Kappa Light Chain count has dropped to 47 from 59 last week. Treatment mix of Velcade and steroids will continue for the next several weeks. Let's hope it keeps working!
Best to all,
Steve
We went to BU Medical Center today for Cilla's weekly treatment and got some good news from the doctor. Cilla's Kappa Light Chain count has dropped to 47 from 59 last week. Treatment mix of Velcade and steroids will continue for the next several weeks. Let's hope it keeps working!
Best to all,
Steve
Monday, September 6, 2010
Be the Buffalo!
HI, it's Cilla! I think I've figured out how to "post". I love hearing from everyone via comments and my family will continue to post how things are going. Amyloidosis is a very strange illness and it's hard to tell if my "symptoms" are currently caused by the chemotherapy or the disease. If I don't reply to emails or comments, it's because some days "I just don't feel like it", but I still enjoy hearing from YOU.
So, here's the "Buffalo Story" that is my mantra these days. It came from a recent edition of Oprah magazine.....
"Be the Buffalo" : Wilma Mankiller, the first female principal chief of the Cherokee nation, tells how the cow runs away from the storm while the buffalo charges directly toward it---and gets through it quicker. Whenever she's confronted with a tough challenge, she does not prolong the torment. She becomes the buffalo.
I am trying to be a buffalo too and just forging ahead with the treatment my doctors are doing. The BU/Boston Medical Center Amyloid Treatment and Research Center is the top in the USA....we've met people from all over the country, including Alaska, so I feel very confident that I"ll come through the storm!
So, here's the "Buffalo Story" that is my mantra these days. It came from a recent edition of Oprah magazine.....
I am trying to be a buffalo too and just forging ahead with the treatment my doctors are doing. The BU/Boston Medical Center Amyloid Treatment and Research Center is the top in the USA....we've met people from all over the country, including Alaska, so I feel very confident that I"ll come through the storm!
Saturday, September 4, 2010
Friday, September 3, 2010
Hey all,
Cilla and I have have had a busy week. We went to Cape Cod for a couple of days, Sunday through Tuesday. We stayed at a B&B in Brewster and had a wonderful time going to the beach at sunset, taking a boat ride, and having a great dinner with Cila's brother Frank and his wife Martha who have a summer home near where we were staying. It was really good to get away for a couple of days! We came back on Tuesday night. Cilla had her weekly medical treatment appointment at BU Meidcal Center on Wednesday. We were visited at the hospital by Cilla's brother Bill who entertained us with his stories and adventures, including encounters with bears in New Hampshire! It was great to have him there. Then we met with Cilla's doctor who said that the Amyloidosis hasn't gotten any worse and decided to add a streroid (Dexamethasone) to her weekly treatment along with the Velcade (chemo). .The goal is to reduce her Kappa Light Chain numbers down to the 25-30 range from the current number which is 59. The Kappa Light Chain number is what they use to actually measure what the Amyloidosis is doing. It's like golf, the lower the number the better. The doctor also ordered another Kappa Light Chain lab test which we'll get the results from next week
Cilla is feeling pretty tired today but doing well overall. We'll continue to keep you posted on what's going on.
Best to all,
Steve
Cilla and I have have had a busy week. We went to Cape Cod for a couple of days, Sunday through Tuesday. We stayed at a B&B in Brewster and had a wonderful time going to the beach at sunset, taking a boat ride, and having a great dinner with Cila's brother Frank and his wife Martha who have a summer home near where we were staying. It was really good to get away for a couple of days! We came back on Tuesday night. Cilla had her weekly medical treatment appointment at BU Meidcal Center on Wednesday. We were visited at the hospital by Cilla's brother Bill who entertained us with his stories and adventures, including encounters with bears in New Hampshire! It was great to have him there. Then we met with Cilla's doctor who said that the Amyloidosis hasn't gotten any worse and decided to add a streroid (Dexamethasone) to her weekly treatment along with the Velcade (chemo). .The goal is to reduce her Kappa Light Chain numbers down to the 25-30 range from the current number which is 59. The Kappa Light Chain number is what they use to actually measure what the Amyloidosis is doing. It's like golf, the lower the number the better. The doctor also ordered another Kappa Light Chain lab test which we'll get the results from next week
Cilla is feeling pretty tired today but doing well overall. We'll continue to keep you posted on what's going on.
Best to all,
Steve
Tuesday, August 24, 2010
Hey all,
Just wanted to report that Cilla had her weekly chemo treatment today. It was uneventful and she is feeling good today. Next week treatment day changes to Wednesday and our doctor returns from vacationing in India.
Best,
Steve
P.S. Attached is a picture of "Nana" Cilla with Casey Rex taken last Saturday.
Monday, August 23, 2010
Hey all,
Thanks to all of you who have posted comments on the blog. Cilla and I really appreciate your kind and positive thoughts. Nothing major to report medically--regular chemo treatment is tomorrow.
Yesterday we were visited by all the "kids" and our grandchildren and had a fun time at Barnes & Noble and the kiddie rides at the Walpole Mall. I know it doesn't sound like much but we are really learning to treasure small events like this. Cilla had a good day today so we went to the movies and saw "The Kids Are All Right". We both thought it was great.
So keep those comments coming and I will update you on any new medical events that come up.
Best to all,
Steve
Thanks to all of you who have posted comments on the blog. Cilla and I really appreciate your kind and positive thoughts. Nothing major to report medically--regular chemo treatment is tomorrow.
Yesterday we were visited by all the "kids" and our grandchildren and had a fun time at Barnes & Noble and the kiddie rides at the Walpole Mall. I know it doesn't sound like much but we are really learning to treasure small events like this. Cilla had a good day today so we went to the movies and saw "The Kids Are All Right". We both thought it was great.
So keep those comments coming and I will update you on any new medical events that come up.
Best to all,
Steve
Sunday, August 22, 2010
Cilla's birthday
My Mom continues to go through her chemotherapy treatments and is taking it "one day at a time" (hence the blog title) but tends to have some days better than others based on how many days after she has her chemo injections. As of now, she gets them on Tuesdays so tends to have low energy during mid week and she improves by the end of the weekend in terms of symptoms and energy- Sunday and Monday are her best days. That said, BU Medical is changing her scheduled day of injection to Wednesday (starting in 2 weeks) so then her good days will be Monday and Tuesday.On the good days, she's more interested in visitors and overall just feels better. Her appetite is up and she has even done some fun things like go to the beach and last weekend to Jane & Paul's farm with the Cunningham fam.
Another such good day was two Sundays ago when we celebrated her birthday in the Quincy Marina (pic above). Dad treated to a wonderful luncheon and we all had just the best time laughing and enjoying memories.
That day reminded us all about how fragile these moments are; that something we used to all take for granted such as going out to lunch together is now a rare happening. That is probably one of the most difficult things for my Mom as she is so social and has such a zest for living life to the fullest. As she is, for this small window of time, a bit on the sidelines, I know she absolutely loves socializing with all the people in her life anyway she can- whether by a quick visit, a card, email, or Facebook. We even hope this blog will be a great place for her to feel the energy and love of those who know her. And, of course, she feels your positive thoughts and prayers.
Well, it is Sunday so here's to a great day for Cilla!
Monday, August 9, 2010
Welcome to Cilla: Winning the Day!
In April 2010, Cilla was diagnosed with a rare disease called Amyloidosis or “Amyloid.” It was devastating news to learn that Cilla, our active, fun-loving, hard-working mother, wife, nana, sister, friend, colleague, aunt & cousin with a zest for life like no other would be “sidetracked” with such a serious disease.
Cilla was immediately referred to the Boston University Medical Center specialized treatment center for Amyloidosis, one of only 2 such treatment and research programs in the U.S. and the treatment journey began. For more information on the BU Amyloid treatment center, please see the link below.
Currently, Cilla is undergoing weekly chemotherapy treatments at BU Medical Center. She received an encouraging report last week that the chemotherapy is in fact working and that she will continue this weekly treatment throughout the fall. However, side effects such as nausea and constant “tingling” in the hands and feet must be endured.
Because Cilla is so very special and loved by an incredible network of friends and family, we wanted to create a site where everyone could “check-in” for treatment updates and also reach out to Cilla with words or stories of encouragement.
Thank you for visiting!
Cilla was immediately referred to the Boston University Medical Center specialized treatment center for Amyloidosis, one of only 2 such treatment and research programs in the U.S. and the treatment journey began. For more information on the BU Amyloid treatment center, please see the link below.
Currently, Cilla is undergoing weekly chemotherapy treatments at BU Medical Center. She received an encouraging report last week that the chemotherapy is in fact working and that she will continue this weekly treatment throughout the fall. However, side effects such as nausea and constant “tingling” in the hands and feet must be endured.
Because Cilla is so very special and loved by an incredible network of friends and family, we wanted to create a site where everyone could “check-in” for treatment updates and also reach out to Cilla with words or stories of encouragement.
Thank you for visiting!
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