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
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The best news ever!!! Keep up the hard work and we'll keep the prayers coming. I may be near Walpole City on Saturday and will stop by with hugs if I can.
ReplyDeletekathleen
xo
Cilla, Great news..keep up the good fight and i will continue to pray for your renewed health.
ReplyDeleteWould love to see you for a cup of tea sometime. will talk to Janet and see if time permits. I take care of Laura's babies (Mason and Kieran 4 mo.) and dylan 3yrs. as she has returned to work full time at the BIDMC in Boston. I also just got a new listine in Walpole and another one coming in NAttleboro. I clean our office so you see I have lots of "hats" to wear each and every day. Love to you and Steve and I enjoy reading the updates. God Bless both of you, Louise
Great news...forget about work and think retirement.....Glad you are out and about....lets do Chinese lunch soon. Love, me
ReplyDeleteCilla, It's great to hear good news and to hear you sounding so upbeat! John and I continue to pray for your continued progress. It sounds like you're making the most of every day. Keep the faith & stay hopeful!! "Life is good - even when it stinks!" :-)
ReplyDeleteLove, Laura
We needed a dose of good news this week and your progress is it! Keep it up, girl...with everybody pulling for you it's just a matter of time before you'll be "Kickin' ass".
ReplyDeleteLove, Mary Ann and Jack
So proud of you & Dr. Steve for your positive outlook and winning the day, one day at a time. love you!!
ReplyDeleteDear Cilla,
ReplyDeleteI'm glad things are going well for you. That's great about seeing many movies, and having fun with family & friends! Your outlook is very postive! I love Patriot Place! I will pray for your fast recovery~ Keep up your great spirit!
Love, Beth
Cilla, I'm so glad that you're feeling better and that you're able to be out and about doing FUN things! That's so awesome! I sure hope that your health continues on this upward trend!! Claudia J. Dupre
ReplyDeleteCilla, we are so pleased that things are back on track and hope we can all start planning an extended family vacation to Disney or a cruise. The sun is breaking through today which is a pleasant site after Tuesday and Wednesday! Keep up the good work.
ReplyDeleteLove,
Paul and Mary
Hi Cilla, I am so happy things are back on track. I am so proud of you, and how strong you have been, spiritually, physically and most of all mentally. You are my inspiration! Steve is as well. You could not have a better husband. Talk Soon, Love, Your Sister Mary
ReplyDeleteHi Cilla, That is sooo great. I was psyched to hear your news. I'm sure it feels great to get out and about even in this weather. You are so strong and truly a fighter. Those Amyloids are "history" with you and Dr. Steve on the job! Keep up the good work. If you ever feel like getting out for coffee or tea, give me a call. I would love to see you! You are always in my thoughts and prayers!
ReplyDeleteCheryl
Hi Cilla,
ReplyDeleteCyd and I were so glad to here that thing are going well. You don't know how often I think of you and wonder how you are doing. We can't wait to take you our for lunch/supper and catch up with you. We are ways thinking of you and hope everything is better for the future.
Love Ceil and Cyd
Hi Cilla and Steve!
ReplyDeleteWhat a team you are! Strong and steady wins the race to feeling better. Cilla, you are such a terrific writer. I love reading about your journeys and activities with your family. As I read all of these comments from your friends and family, I can't stop to think about how much love surrounds you each and every day. Sending more love and hugs your way.....big time! So glad you are feeling well. Keep it up girl!
--Just Janet Wellock
Keep the Faith, I am also an AL amyloidosis patient on Rev/Dex and my kappa free light chains are pretty close to the normal range. God Bless You and let those free light chains keep on going going going going DOWN.
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