Hello dear friends,
This is Steve writing to you on Cilla's blog. I think many of you are aware of what has happened but for those of you who live out of our area I need to inform you with great sadness that Cilla passed away on November 30.As she wrote in her blog entry on July 23 she and her doctors were concerned with not only her growing Amyloid count but with her kidneys as well.
You are aware that Cilla had to go in to the hospital in September. She seemed to recover from that but on the night of Novmber 20 she woke up complaining of stomach pain. That was quickly followed by heavy bleeding when she went to the bathroom. We rushed her in to the Emergency Room at Boston Medical Center where it was determined that she had come down with another blood infection.
Cilla was taken up to ICU shortly thereafter and for the next several days my family and I rode an emotional rollercoaster. After two days in ICU the microbe organism that was causing the bloood infection was identified and a new course of antibiotics was administered. At that time the doctors were pretty optimistic that once the infection was under control that Cilla's kidneys woud restore normal functionality. As the days wore on this proved not to be the case. Her kidney function quickly worsened to the point where even dialysis was not an option. On Wednesday the 28th we were told that there was no longer any hope.
My kids and and and some truly remarkable friends maintained a day and night vigil at her bedside. On the night of November 30, exhausted and sad, we left the hospital arounnd 7:30 PM.
At 11:15 I received a call from the hospital that Cilla had finally succombed. I was told that she died peacefully.
Cilla put up a truly amazing fight against her deadly disease and along with being one of the best human beings on the planet she proved to be one the greatest patients too. In her three year battle with Amyloidosis I seldom, if ever, heard her complain about her lot in life. To the end she maintained a positive and loving attitude and soaked up every minute of joy that she could.
Meeting, falling in love, and being married to Cilla were the greatest things that ever happened in my life. She nay be gone but the memories and her spirit live on.
Thank you for all the love and support that you gave to her.
Sincerely,
Steve
Sunday, January 6, 2013
Thursday, October 4, 2012
Chaotic September 2012
Hello, everyone.
I didn't realize it had been so long since I posted. We've had a September that just went by in a blur and we are still recovering.
I did start the new Clinical Trial in late August and it seemed to be going well. We went to the Berkshires for Labor Day week and enjoyed a wonderful concert at Tanglewood (The Great American Songbook) and an interesting visit to the Crane Paper Museum. They make all the paper used for our currency and other money around the world. The Secret Service guards the facility and keeps the process a secret to try to foil counterfeiters. We also went to a new play "Satchmo at the Waldorf", a one-man show about the life of Louis Armstrong. Really good! Steve also got in some fishing and we both relaxed.
I started to have some symptoms of dizziness, lightheaded, etc. while we were there, but I have spells like that all the time, so didn't give it much thought. Two days after we got home, on Monday, September 10, Steve went into the hospital to have his knee replaced. While he was still in the hospital, my doctor called and said, according to my latest lab reports, my red cell count was very low. I needed to go into Boston Medical Center for a blood transfusion.The drug trial was put on hold. My brother Frank and his wife Martha spent the day with me at BMC (I got a ride there from a friend, Suki Meredith) while I had the transfusion. They pushed me around the hospital campus in a wheelchair.
Steve was discharged the next day. Since I was not driving (worried about dizzy spells....) another friend, Kay Sorensen, drove me to Needham to pick up Steve. Our neighbor Bill Holbrook helped us get him into the house and settled in. The next week was sort of uneventful. We had someone come and spend the night every night the first week Steve was home, just in case. Thank you to my sister Suzie, friends Janet, Wally and Cheryl, Alan, Carrie and Matt. Sarah spent a lot of spare time during the day with us.
I thought I'd be able to do the daily work around the house without any problem, but I hadn't counted on how immobile Steve would be. He needed help with PT, showering, etc. I was going downhill and exhausted over the next week. By September 21, I couldn't even walk ten feet without having to rest and catch my breath. I had some other symptoms, too, and Saturday morning Pat Barylick drove me into BMC where they admitted me for two nights. I had three blood transfusions and went home feeling much better. However, it was clear that I couldn't hold down the fort while Steve was recuperating and that I needed to rest.
We are SO fortunate that our friend Lisa Oberly stepped up to the plate and we were able to hire her as our "home care aide". She comes in the morning, makes sure we get all of our meds, makes breakfast, helps Steve with his PT and shower and just makes me rest. She comes back later for lunch, runs the laundry and dishwasher, makes supper, runs errands and is the BEST. We would be "in the soup" if she wasn't able to come help us out.
I went back on the clinical trial on October 2, and so far, so good. Still not driving, but I think if all goes well and I don't have any more dizziness, then I can start to do some driving and get back to normal after next week. We've had lots of neighbors and friends volunteer to drive us to doctor's appointments and that has been invaluable. Steve should be mobile in about 3 more weeks if all goes well. His range of motion and flexibility improve every day and he is diligent about his PT.
The highlight of the month was Jackson's baptism on September 30. We were able to get to church and be there for his big moment. He was the best baby and we had a wonderful family day. We also celebrated Charlotte's 5th birthday with a special cake and pinata after church.
So with the help of marvelous siblings, children, in-laws, friends and neighbors, and lots of prayers and good wishes, we are doing better every day. Thank you all! Keep up the prayers and thoughts.
I didn't realize it had been so long since I posted. We've had a September that just went by in a blur and we are still recovering.
I did start the new Clinical Trial in late August and it seemed to be going well. We went to the Berkshires for Labor Day week and enjoyed a wonderful concert at Tanglewood (The Great American Songbook) and an interesting visit to the Crane Paper Museum. They make all the paper used for our currency and other money around the world. The Secret Service guards the facility and keeps the process a secret to try to foil counterfeiters. We also went to a new play "Satchmo at the Waldorf", a one-man show about the life of Louis Armstrong. Really good! Steve also got in some fishing and we both relaxed.
I started to have some symptoms of dizziness, lightheaded, etc. while we were there, but I have spells like that all the time, so didn't give it much thought. Two days after we got home, on Monday, September 10, Steve went into the hospital to have his knee replaced. While he was still in the hospital, my doctor called and said, according to my latest lab reports, my red cell count was very low. I needed to go into Boston Medical Center for a blood transfusion.The drug trial was put on hold. My brother Frank and his wife Martha spent the day with me at BMC (I got a ride there from a friend, Suki Meredith) while I had the transfusion. They pushed me around the hospital campus in a wheelchair.
Steve was discharged the next day. Since I was not driving (worried about dizzy spells....) another friend, Kay Sorensen, drove me to Needham to pick up Steve. Our neighbor Bill Holbrook helped us get him into the house and settled in. The next week was sort of uneventful. We had someone come and spend the night every night the first week Steve was home, just in case. Thank you to my sister Suzie, friends Janet, Wally and Cheryl, Alan, Carrie and Matt. Sarah spent a lot of spare time during the day with us.
I thought I'd be able to do the daily work around the house without any problem, but I hadn't counted on how immobile Steve would be. He needed help with PT, showering, etc. I was going downhill and exhausted over the next week. By September 21, I couldn't even walk ten feet without having to rest and catch my breath. I had some other symptoms, too, and Saturday morning Pat Barylick drove me into BMC where they admitted me for two nights. I had three blood transfusions and went home feeling much better. However, it was clear that I couldn't hold down the fort while Steve was recuperating and that I needed to rest.
We are SO fortunate that our friend Lisa Oberly stepped up to the plate and we were able to hire her as our "home care aide". She comes in the morning, makes sure we get all of our meds, makes breakfast, helps Steve with his PT and shower and just makes me rest. She comes back later for lunch, runs the laundry and dishwasher, makes supper, runs errands and is the BEST. We would be "in the soup" if she wasn't able to come help us out.
I went back on the clinical trial on October 2, and so far, so good. Still not driving, but I think if all goes well and I don't have any more dizziness, then I can start to do some driving and get back to normal after next week. We've had lots of neighbors and friends volunteer to drive us to doctor's appointments and that has been invaluable. Steve should be mobile in about 3 more weeks if all goes well. His range of motion and flexibility improve every day and he is diligent about his PT.
The highlight of the month was Jackson's baptism on September 30. We were able to get to church and be there for his big moment. He was the best baby and we had a wonderful family day. We also celebrated Charlotte's 5th birthday with a special cake and pinata after church.
So with the help of marvelous siblings, children, in-laws, friends and neighbors, and lots of prayers and good wishes, we are doing better every day. Thank you all! Keep up the prayers and thoughts.
Sunday, August 12, 2012
All Good Things Must Come to an End
Hello everyone.
I haven't published anything lately, because life was humming along very nicely and I was sure I would bore everyone with reporting on our trips, family time, etc. but lurking under the surface for the last several months has been the realization that eventually I was going to get unsettling news from my every six weeks evaluations at Boston Medical Center. So, last time I went to BMC (July 23 & 24), we were told that my kidney function had worsened and that my Amyloid "numbers" had gone up about 14 points. Over the last year they had hung out in a plateau going up a couple of points each time I had the tests, but nothing alarming. Now that the doctors feel the Amyloid is "trending upward" fairly significantly, it's time to try to slow it down and maybe get it into the normal range.
So, after about two weeks of soul-searching, asking questions,talking to Steve, the kids and some friends, I have decided to go on a new clinical trial that is just opening up in Boston. It is for a drug called Pomolidimide which is similar to the Revlimid I had last year. It has been throughly researched for treatment of Multiple Myloma, but not vetted for Amyloid yet. However, from what I can tell, all the Amyloid treatments and clinical trials are all based on what has worked for Myloma. I will be the third person to be on this trial with Pomolidimide. The possible side effects are similar to Revlimid and include low white cell count, low platelets, fatigue, blah,blah. I'll need to break out my mask again and keep out of crowds, malls, the usual. No more grocery shopping for me (one of the few benefits! :) ) This trial will last for just a few months to up to a year, depending on how I tolerate it. I will start on August 20.
In the meantime, I also have my kidney function to worry about. I've had to REALLY reduce my salt intake (I was careful about it, but now I have to be fanatical). And reduce how much I can drink and take more diuretics. I have lost about 8 pounds in the last two weeks, which was all fluid. Yikes. If I can reduce the amount of Amyloid forming in the kidneys then I can keep the function where it is or maybe improve somewhat. That is the hope!
Steve is having knee surgery on September 10th to replace his bum knee. He is looking forward to no more pain (me, too), but we may both be on the "PUP" list for a good part of the fall.
We do have some wonderful things coming up in the next couple of months: Alan and Brooke are expecing a baby girl in December so we will have another grandchild! The new baby will join Casey who is starting kindergarden. Jackson continues to do very well....he is really cute!...and Sarah and Matt are coping with a new baby, new MBA and job, new schedules and hanging in very well. Carrie and Paul have moved and the girls are really enjoying their new yard. Elizabeth will be in first grade and Charlotte missed the kindergarden cut off and will be spending another year in Nursery school. They do all kinds of fun stuff.....dance, swimming, soccer and coming up next, karate.
So, it's time for me to ask for more prayers and good thoughts to come our way. We will need them!!! And I so appreciate your comments and cheering me on. I really do try to be a Buffalo!
I haven't published anything lately, because life was humming along very nicely and I was sure I would bore everyone with reporting on our trips, family time, etc. but lurking under the surface for the last several months has been the realization that eventually I was going to get unsettling news from my every six weeks evaluations at Boston Medical Center. So, last time I went to BMC (July 23 & 24), we were told that my kidney function had worsened and that my Amyloid "numbers" had gone up about 14 points. Over the last year they had hung out in a plateau going up a couple of points each time I had the tests, but nothing alarming. Now that the doctors feel the Amyloid is "trending upward" fairly significantly, it's time to try to slow it down and maybe get it into the normal range.
So, after about two weeks of soul-searching, asking questions,talking to Steve, the kids and some friends, I have decided to go on a new clinical trial that is just opening up in Boston. It is for a drug called Pomolidimide which is similar to the Revlimid I had last year. It has been throughly researched for treatment of Multiple Myloma, but not vetted for Amyloid yet. However, from what I can tell, all the Amyloid treatments and clinical trials are all based on what has worked for Myloma. I will be the third person to be on this trial with Pomolidimide. The possible side effects are similar to Revlimid and include low white cell count, low platelets, fatigue, blah,blah. I'll need to break out my mask again and keep out of crowds, malls, the usual. No more grocery shopping for me (one of the few benefits! :) ) This trial will last for just a few months to up to a year, depending on how I tolerate it. I will start on August 20.
In the meantime, I also have my kidney function to worry about. I've had to REALLY reduce my salt intake (I was careful about it, but now I have to be fanatical). And reduce how much I can drink and take more diuretics. I have lost about 8 pounds in the last two weeks, which was all fluid. Yikes. If I can reduce the amount of Amyloid forming in the kidneys then I can keep the function where it is or maybe improve somewhat. That is the hope!
Steve is having knee surgery on September 10th to replace his bum knee. He is looking forward to no more pain (me, too), but we may both be on the "PUP" list for a good part of the fall.
We do have some wonderful things coming up in the next couple of months: Alan and Brooke are expecing a baby girl in December so we will have another grandchild! The new baby will join Casey who is starting kindergarden. Jackson continues to do very well....he is really cute!...and Sarah and Matt are coping with a new baby, new MBA and job, new schedules and hanging in very well. Carrie and Paul have moved and the girls are really enjoying their new yard. Elizabeth will be in first grade and Charlotte missed the kindergarden cut off and will be spending another year in Nursery school. They do all kinds of fun stuff.....dance, swimming, soccer and coming up next, karate.
So, it's time for me to ask for more prayers and good thoughts to come our way. We will need them!!! And I so appreciate your comments and cheering me on. I really do try to be a Buffalo!
Monday, April 30, 2012
Catching Up
Hello everyone....I realize it's been a long time since I updated the blog. I have been doing well and been taking advantage of this respite from chemo.
After being kept from cruising in late January, I continued to be on medication and recuperating for at least another month into late February. Had my regular amyloid evaluation on Feb. 27 and 28th with the usual array of tests and procedures. Figures were still stable, so I had another six weeks until I went back on April 10th. Numbers are still "pretty stable", so I've been given another six weeks off. I know at some point the numbers are going to continue to creep up (as they have been) until the doctors are going to have to recommend another treatment. But for now, I will enjoy my life for each six week increment!
The biggest news is the birth of our sweet new grandson, Jackson Campbell Walker, son of Sarah and Matt. He arrived on March 14 and we were his first visitors at 4 hours old. I've been able to drive in to Boston at least once a week to give Sarah a hand and spend some time with her and Jackson.
Steve and I went to Sanibel Island in Florida for a week and went to the Red Sox last home game of spring training at the new stadium in Fort Myers. A fun time. Sanibel is beautiful and I recommend it! Warm water on the Gulf, bike paths everywhere and great restaurants. Actually, the restaurants may have been my downfall; I came back with an overabundance of fluid on-board and had to take lots of Lasix (water pills) to take it off. I lost about 10 pounds in eleven days! yikes.
Have also kept busy with other fun things....lunches with friends, forums at the Kennedy Library, birthday parties, Games Nights, Museum of Fine Arts, and enjoying the grandchildren. I've also volunteered to take on writing publicity for United Church in Walpole. It keeps my creative juices flowing and is something I can do from home on my own time. So keep an eye out in the Walpole Times and Hometown Weekly!
That's it for now. Have a Happy Spring and I'll check in later in May/June with another update.
Thanks again for all your prayers and concern. I can feel it and I appreciate it.
Cilla
After being kept from cruising in late January, I continued to be on medication and recuperating for at least another month into late February. Had my regular amyloid evaluation on Feb. 27 and 28th with the usual array of tests and procedures. Figures were still stable, so I had another six weeks until I went back on April 10th. Numbers are still "pretty stable", so I've been given another six weeks off. I know at some point the numbers are going to continue to creep up (as they have been) until the doctors are going to have to recommend another treatment. But for now, I will enjoy my life for each six week increment!
The biggest news is the birth of our sweet new grandson, Jackson Campbell Walker, son of Sarah and Matt. He arrived on March 14 and we were his first visitors at 4 hours old. I've been able to drive in to Boston at least once a week to give Sarah a hand and spend some time with her and Jackson.
Steve and I went to Sanibel Island in Florida for a week and went to the Red Sox last home game of spring training at the new stadium in Fort Myers. A fun time. Sanibel is beautiful and I recommend it! Warm water on the Gulf, bike paths everywhere and great restaurants. Actually, the restaurants may have been my downfall; I came back with an overabundance of fluid on-board and had to take lots of Lasix (water pills) to take it off. I lost about 10 pounds in eleven days! yikes.
Have also kept busy with other fun things....lunches with friends, forums at the Kennedy Library, birthday parties, Games Nights, Museum of Fine Arts, and enjoying the grandchildren. I've also volunteered to take on writing publicity for United Church in Walpole. It keeps my creative juices flowing and is something I can do from home on my own time. So keep an eye out in the Walpole Times and Hometown Weekly!
That's it for now. Have a Happy Spring and I'll check in later in May/June with another update.
Thanks again for all your prayers and concern. I can feel it and I appreciate it.
Cilla
Friday, January 27, 2012
Focusing on the good stuff
First, here's my "bummer" news...just to get it off my chest. (bad pun) I've had a bad cold/sinus infection, wicked cough, etc. all month....starting New Year's week-end! Have been to the doctor at least 3 times...so, now several antiobiotics, inhalers, steroids,codeine,lung fluid later....I have some kind of chest infection/asthma thing that has caused my doctor to cancel our Carribean cruise. So today I am feeling sorry for ourselves.. Steve is taking it very philosphically and feels it was inevitable. I was still hopeful up until yesterday when Dr. Dusseault layed the hammer down. So we're around this week and I"d love a call or visit. We can pretend we're on a cruise together! I was thinking of dressing in my summer clothes and visiting the Olde CountryBuffet to try to duplicate the cruise experience. See, just writing this is making me in a better mood.
In the meantime, we had a wonderful Christmas with all the kids and everyone was healthy and happy. Went to the Disney on Ice show with Carrie, Sarah, Elizabeth and Charlotte and Carrie's mother in law Mary. A fun girls afternoon out. Love figure skating! even the Disney variety... Had a fun New Year's week-end with Mary and Ron at Chatham First Night on the Cape. I didn't stay up until midnight (my cold had already kicked in) but we had a lot of laughs together. We've been enjoying the Patriots march to the Superbowl, too.
We are excitedly waiting for our newest grandchild to make an appearance. Sarah's pregnancy is coming along nicely and she is due on March 7. The winter has been mild and so I do have lots to be thankful and appreciative for.
Thanks for listening. :)
Love, Cilla
In the meantime, we had a wonderful Christmas with all the kids and everyone was healthy and happy. Went to the Disney on Ice show with Carrie, Sarah, Elizabeth and Charlotte and Carrie's mother in law Mary. A fun girls afternoon out. Love figure skating! even the Disney variety... Had a fun New Year's week-end with Mary and Ron at Chatham First Night on the Cape. I didn't stay up until midnight (my cold had already kicked in) but we had a lot of laughs together. We've been enjoying the Patriots march to the Superbowl, too.
We are excitedly waiting for our newest grandchild to make an appearance. Sarah's pregnancy is coming along nicely and she is due on March 7. The winter has been mild and so I do have lots to be thankful and appreciative for.
Thanks for listening. :)
Love, Cilla
Thursday, December 15, 2011
Happy Holidays Everyone!!
HI...It's hard to believe the difference in my health from this time last year; no chemo, neutrepenia, mask,etc. I had another evaluation the week after Thanksgiving and I am still "stable". So I have been given another reprieve for three months. The evaluation did show that the amyloid numbers have crept up a bit and so has the kidney function test. However, neither of those tests caused the doctors to feel we had to make any immediate changes or find a new treatment, so I am just going to enjoy the holidays (and the the Carribean cruise we have planned for late January!) and have another evaluation in early March.
So I am feeling well and have been very active. We had a week vacation in Tucson in October. Sunny, warm, desert landscape and plenty of time with our friends Fran and Anna. Glorious. We've had lots of other adventures, museum trips, etc. I do run out of energy if I do too much, so Steve tries to get me to "rein it in" and rest more during the day. But compared to recent months, it's "all good".
So we are getting ready for Christmas and New Year's, our cruise, and Sarah & Matt's expected baby arrival and then see what's what at the next evaluation. So keep the prayers and good thoughts coming our way. I really know that they work!
xxxxx
Cilla
So I am feeling well and have been very active. We had a week vacation in Tucson in October. Sunny, warm, desert landscape and plenty of time with our friends Fran and Anna. Glorious. We've had lots of other adventures, museum trips, etc. I do run out of energy if I do too much, so Steve tries to get me to "rein it in" and rest more during the day. But compared to recent months, it's "all good".
So we are getting ready for Christmas and New Year's, our cruise, and Sarah & Matt's expected baby arrival and then see what's what at the next evaluation. So keep the prayers and good thoughts coming our way. I really know that they work!
xxxxx
Cilla
Saturday, October 1, 2011
GOOD NEWS!
HI..it's been a long time since I updated this blog. I have spent the last 6 weeks just getting stronger and feeling better. Almost normal.....
I had an evaluation last Monday at BMC to see if I was OK to go on the Revlimid trial. I actually was not looking forward to going back on the trial because the drug wreaks such havoc on my body. I know it was a big factor in my hospitalization. At the evaluation I had another "Kappa Light Chain" test which measures the amount of Amyloids that are in my blood. When I started being treated at BMC a year ago May, the number was about 250. Today it is 44 and has stayed in the range of 50 to 44 for about 5 months. ("Normal" is 20/25)
So, the doctors have declared me "Stable".....no more treatments at this time. Just my usual meds and watching some other vitals, but mostly just being "normal". I have started to do some short trip daytime driving and will graduate to highway and maybe night driving soon. You might see me at the grocery store or CVS or the Christmas Tree Shop! Steve and I really hope to take a long delayed major vacation later this month. I still have to "take it easy" and not try to jump into my former life with both feet. Plus, this "Stable" thing is going to be on a month by month basis. We will go back to BMC in early November for more Kappa LIght Chain testing and other organ tests. But for now, I am going to revel in being "Stable" and just living with this disease.
What makes me most excited about being stable is that Sarah and Matt are expecting their first baby in March and I was feeling sad and frustrated that I might not be able to help them. But if all goes well, I will be able to be a good Nana and help with the laundry and the rocking!
Thank you everyone for your continued thoughts and prayers. Keep them coming....Steve and I will still need them.
Love, Cilla
XXXXXX
I had an evaluation last Monday at BMC to see if I was OK to go on the Revlimid trial. I actually was not looking forward to going back on the trial because the drug wreaks such havoc on my body. I know it was a big factor in my hospitalization. At the evaluation I had another "Kappa Light Chain" test which measures the amount of Amyloids that are in my blood. When I started being treated at BMC a year ago May, the number was about 250. Today it is 44 and has stayed in the range of 50 to 44 for about 5 months. ("Normal" is 20/25)
So, the doctors have declared me "Stable".....no more treatments at this time. Just my usual meds and watching some other vitals, but mostly just being "normal". I have started to do some short trip daytime driving and will graduate to highway and maybe night driving soon. You might see me at the grocery store or CVS or the Christmas Tree Shop! Steve and I really hope to take a long delayed major vacation later this month. I still have to "take it easy" and not try to jump into my former life with both feet. Plus, this "Stable" thing is going to be on a month by month basis. We will go back to BMC in early November for more Kappa LIght Chain testing and other organ tests. But for now, I am going to revel in being "Stable" and just living with this disease.
What makes me most excited about being stable is that Sarah and Matt are expecting their first baby in March and I was feeling sad and frustrated that I might not be able to help them. But if all goes well, I will be able to be a good Nana and help with the laundry and the rocking!
Thank you everyone for your continued thoughts and prayers. Keep them coming....Steve and I will still need them.
Love, Cilla
XXXXXX
Monday, August 15, 2011
Summertime
Hello, everyone. This has been a crazy summer.....end of June and all of July were "ups and downs". Low platelets, low white cells, blah, blah. No clinical trial treatment, just lots of "keeping an eye on things". We did have plenty of good days....went to the beach at least three times (used the handicapped placard and special needs wheelchair to full advantage ). We also had several very good lobster rolls (Thanks especially to Pat Marwell!) and visited the Franklin Park Zoo with Carrie and the girls. We had a fun birthday dinner for my sister and I got to see all my siblings and a few cousins, too. The last week-end in July, we took the first "getaway" we'd had since last year and went to Maine to stay with friends for two nights. We had a lovely, relaxing time and came home on Sunday afternoon. The next day, August 1, all hell broke loose.
I ended up late in the afternoon with an emergency trip to Norwood hospital ( had a temp of 104 and bleeding). They stabilized me, started some IV's including a super-antibiotic since they suspected I had a penicillin-resistant blood infection. Then I had a wild ambulance ride from Norwood to Bostom Medical Center (up the expressway with lights and sirens......I hope never to be repeated! ). There I spent 4 days in ICU with the BEST bunch of nurses and doctors ever! It was a hellacious four days....no sleep or food(just ice chips), lots of tests and IV's. Then I was finally moved to a medical floor for another 5 days. I was "neutrapenic" so I had a single room with a fantastic view of the Boston skyline.
So, now I am home...gathering my strength and recuperating. I don't know when the Amyloid Center will start up my treatment cycle again. I've already been back for a visit to the clinic since I got out of in-patient, so I imagine I'll be going back again soon before any decision is made.
My family was fantastic. I was never alone in the ICU...always had Steve, Carrie, Sarah or Alan keeping an eye on things. Casey sent in a beautiful picture of the beach (sans ocean!) that he did for me and Charlotte and Elizabeth made me beaded necklaces. My wonderful "in laws": Paul, Brooke and Matt, came to visit, too. I am SO lucky to have such a beautiful and fabulous family. And even MORE lucky to have them within driving distance. I so appreciate their presence. XXXXX
The whole time I was in the ICU I kept repeating the words of a favorite hymn that I had just heard up in Maine "Jesus calls us o'er the tumult of life's wild and raging sea.......". It kept me focused on God, my church and "getting through" the tumult. We never know when our calm seas are going to turn raging and being able to focus on a hymn or a prayer really helps.
Bye for now. I hope everyone enjoys the last couple of weeks ot the summer. We hope for one more trip to the beach if all goeas well!
I ended up late in the afternoon with an emergency trip to Norwood hospital ( had a temp of 104 and bleeding). They stabilized me, started some IV's including a super-antibiotic since they suspected I had a penicillin-resistant blood infection. Then I had a wild ambulance ride from Norwood to Bostom Medical Center (up the expressway with lights and sirens......I hope never to be repeated! ). There I spent 4 days in ICU with the BEST bunch of nurses and doctors ever! It was a hellacious four days....no sleep or food(just ice chips), lots of tests and IV's. Then I was finally moved to a medical floor for another 5 days. I was "neutrapenic" so I had a single room with a fantastic view of the Boston skyline.
So, now I am home...gathering my strength and recuperating. I don't know when the Amyloid Center will start up my treatment cycle again. I've already been back for a visit to the clinic since I got out of in-patient, so I imagine I'll be going back again soon before any decision is made.
My family was fantastic. I was never alone in the ICU...always had Steve, Carrie, Sarah or Alan keeping an eye on things. Casey sent in a beautiful picture of the beach (sans ocean!) that he did for me and Charlotte and Elizabeth made me beaded necklaces. My wonderful "in laws": Paul, Brooke and Matt, came to visit, too. I am SO lucky to have such a beautiful and fabulous family. And even MORE lucky to have them within driving distance. I so appreciate their presence. XXXXX
The whole time I was in the ICU I kept repeating the words of a favorite hymn that I had just heard up in Maine "Jesus calls us o'er the tumult of life's wild and raging sea.......". It kept me focused on God, my church and "getting through" the tumult. We never know when our calm seas are going to turn raging and being able to focus on a hymn or a prayer really helps.
Bye for now. I hope everyone enjoys the last couple of weeks ot the summer. We hope for one more trip to the beach if all goeas well!
Tuesday, June 21, 2011
May....a long month with a short name!
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!
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, 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!
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| 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
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
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