Wednesday Warrior!!!



Brenda & Cilla hangin' out at BU

 Today Cilla had her weekly "Velcade" (chemotherapy) and "Dex" (steroid) treatment and was accompanied by her friend, the lovely Brenda Stewart (thank you Brenda!!).

I was fortunate to join the two ladies for an extended lunch break and got to spend some "QT" in the BU Medical Center chemo treatment ward. We gossiped (exactly how many twins are there on Arrowhead Lane in Walpole??), talked business & current events (where is all the Haitian aid money? What's with all these blogger's making movies & millions and how can we do that???), and had tasty (if not messy) sandwiches from Blunch...Try the "Cilla" next time you are in there- cheddar cheese, artichokes, roasted red peppers & tomato panini with extra, extra napkins!

Medical recap based on our visit from "Dr. S.": 

• Cilla has recently been experiencing some pretty significant coughing and wheezing fits. Dr. S. said the wheezing/coughing and evidence of fluid increase over the last week or so is definitely related to being on the "Dex" now for 4 weeks. She reduced the Dex (steroid) down to an "8" for today (last week was 10, she used to be on a 20 back in May/June) to hopefully help with the wheezing & coughing.
• The "tingling" in Cilla's hands & feet is also a direct result of being on the Velcade for as long as she has, however, there is nothing she can do unless she lessens the Velcade which Cilla does NOT want to happen. Cilla made it clear to Dr. S. that she will take the dose "as is!" despite these annoying (and sleep depriving) side-effects.
• Dr. S said Cilla is STRONG and doesn't complain and that she "is doing very, very well"!
• Dr. S. said Mom could probably fly somewhere or "take a break" soon...but TBD
• Dr. S sends her support to all, especially to "Mr. Weatherbee" who had to work today...I think she might have a little crush...but who doesn't love Steve??? :-)

The schedule for October is as follows:

• Chemo will continue to be every Wednesday until October 20th (Oct. 6th, 13th & 20th). 
• Cilla will undergo a three-day evaluation in the BU Amyloid Research Center beginning on Oct. 25th...hopefully she'll get to spend some time with the "cute" clinical Dr. that Janet Robinson & Cilla liked so much. :-)
• On Friday October 29th, the "Amyloid Team" will do their weekly amyloid patient assessment meeting and determine the next path for Cilla. It could be more chemo, it could be a break, it could be a Stem Cell treatment...we are not sure yet so stay tuned!!!  

Love to all & thanks for reading!
-Sarah

Hello all,
As promised I'm posting a medical update on Cilla. As they might say say in the newsroom, today was a slow news day. We zipped in to the Boston Medical Center this morning courtesy of the hardly used HOV lane on the Southeast Expressway (Boston drivers are averse to ride sharing), then found a spot in the hospital front entrance Handicapped lot (not always the case), and got up to the waiting room around 10:20 for our 10:30 appointment. Then we had to wait for over an hour to get a bed and cubicle for Cilla. There's too many sick people these days! Next to Cilla's cubicle was an 82 year old man who appeared to be delerious, alternately singing "Take me out the the ballgame" and crying out for a sandwich. Today we didn't have a visit from our doctor and they just drew blood for Cilla's weekly lab tests. Everything seems to be about the same.
I'll let you know if anything "newsworthy" comes up. In the meantime, thank you all for your conitinued love and support.
Steve

A Beautiful Day!

HI, all.....Today was such a nice day!  Brooke and Casey Rex came by for lunch (and brought some for us!) and we all ate outside on the deck.  After they headed home, we decided to take our maiden voyage in the wheelchair lent to us by John and Shirley Lilly.  I have been fighting the idea of using/needing a wheelchair, but it was time to give it a whirl. 
So, Steve and I went to the Walpole Mall to go birthday present shopping for Charlotte at Barnes and Noble.  We had a tough time getting through the big double doors (try being a "disabled person" once in a while and you will see it is not that easy to get around!), but luckily some people came along and held the doors open for us.   The B&N salespeople had to move a few items around so I could get closer to the shelves to check out the stuff.  THEN, on the way out, I lost control and smacked into a display shelf of audio books.....everything came tumbling down, including the shelf.  So embarrassing! :)   Steve picked up all the merchandise, but we left the shelf for someone else to fix.  A store employee and a customer held the doors open for us for a speedy getaway........
After really resisting the idea of "succumbing" to a wheelchair, I have to admit that even with the problems we ran into, the wheelchair helped me stay a lot longer at the mall and enjoy the day.  So, hopefully I"ll only need it until the end of chemo and then be able to stay on my feet longer.
We ended the day at our usual haunt, the 204 Washington, and I'm ready for a new round of chemo tomorrow.
Thanks again to everyone for your prayers and support!  xxxxxxxx  Cilla

Hey all,

We had a nice visit from Carrie, Elizabeth, and Charlotte yesterday. The highlight for the girls was story time with "Nana".

Best to all,

Steve

Good report today

Hello all,
We went to BU Medical Center today for Cilla's weekly treatment and got some good news from the doctor. Cilla's Kappa Light Chain count has dropped to 47 from 59 last week. Treatment mix of Velcade and steroids will continue for the next several weeks. Let's hope it keeps working!
Best to all,
Steve

Be the Buffalo!

HI, it's Cilla! I think I've figured out how to "post". I love hearing from everyone via comments and my family will continue to post how things are going. Amyloidosis is a very strange illness and it's hard to tell if my "symptoms" are currently caused by the chemotherapy or the disease. If I don't reply to emails or comments, it's because some days "I just don't feel like it", but I still enjoy hearing from YOU.

So, here's the "Buffalo Story" that is my mantra these days. It came from a recent edition of Oprah magazine.....

"Be the Buffalo" : Wilma Mankiller, the first female principal chief of the Cherokee nation, tells how the cow runs away from the storm while the buffalo charges directly toward it---and gets through it quicker. Whenever she's confronted with a tough challenge, she does not prolong the torment. She becomes the buffalo.

I am trying to be a buffalo too and just forging ahead with the treatment my doctors are doing. The BU/Boston Medical Center Amyloid Treatment and Research Center is the top in the USA....we've met people from all over the country, including Alaska, so I feel very confident that I"ll come through the storm!

Cape Cod pix

Hey All,
Here are a few pix form our getaway to the cape this week.
Best to all!
Steve

Hey all,
Cilla and I have have had a busy week. We went to Cape Cod for a couple of days, Sunday through Tuesday. We stayed at a B&B in Brewster and had a wonderful time going to the beach at sunset, taking a boat ride, and having a great dinner with Cila's brother Frank and his wife Martha who have a summer home near where we were staying. It was really good to get away for a couple of days! We came back on Tuesday night. Cilla had her weekly medical treatment appointment at BU Meidcal Center on Wednesday. We were visited at the hospital by Cilla's brother Bill who entertained us with his stories and adventures, including encounters with bears in New Hampshire! It was great to have him there. Then we met with Cilla's doctor who said that the Amyloidosis hasn't gotten any worse and decided to add a streroid (Dexamethasone) to her weekly treatment along with the Velcade (chemo). .The goal is to reduce her Kappa Light Chain numbers down to the 25-30 range from the current number which is 59. The Kappa Light Chain number is what they use to actually measure what the Amyloidosis is doing. It's like golf, the lower the number the better. The doctor also ordered another Kappa Light Chain lab test which we'll get the results from next week
Cilla is feeling pretty tired today but doing well overall. We'll continue to keep you posted on what's going on.
Best to all,
Steve