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
Subscribe to:
Posts (Atom)