I love Christmas time...I really do. I love everything that Christmas means. Especially this Christmas. I also love the music, the shopping, the food, decorating the house. I love the cards and letters, the parties, the TV Christmas specials, and celebrating with family. I love that all my kids are home now. I love watching Elf...over and over and over. Most of all, this year I love that this past week Fred, Del and I made what will be a semi-annual pilgrimage to BU's Amyloid Clinic.( I couldn't go without my entourage!) It was time to have a series of tests to determine the durability of the (incredible) SCT I went thru 6 months ago, (even if I did have to endure another Bone Marrow Biopsy...ouch!)
For the last couple of weeks, I have had a calm feeling overall...quite the opposite of what you would expect. I cannot explain it. I suppose some of it could be that I had a laundry list of seasonal projects to keep me busy, lots of shopping, baking etc. Despite the fact that I still having all the symptoms that I had prior to treatment, I really felt like I was going to get a positive outcome from all the tests and I was not too worried. I knew that nothing they could throw at me this week could be worse than what I just came through, and whatever the outcome I could deal with it. I had truly surrendered to God and knew I could rely on his strength and grace to see me through anything.
One of the best things about these 3 days was that I was able to connect with other patients. Some new patients, recently diagnosed and who are weighing their treatment options, and other patients who are returning for their follow up evaluations. I love that I can share with others about the incredible caregivers at BU, about the treatment I have received and to sincerely be a source of hope for their future. There is so much to learn and so much to think about as a new patient.
After 2 days of tests, poking and the dreaded biopsy, we sat down with Dr Skinner (who began the Amyloid Program @ BU 16 years ago!). She gently reviewed the statistics with us again: Four tests need to come back negative in order to achieve Complete Remission. 45% of patients who get through the SCT/HDC actually achieve CR. That means the Amyloid factory has been shut down. (It takes several years for the Nephrotic Syndrome to abate due to the Amyloid proteins still in my kidneys.) Of those patients, about 25% have a relapse within 2-5 years and require additional treatment. (NOT even going to think about this right now!) 55% of SCT patients do not achieve "CR" and require further treatment. Treatments vary depending on lots of factors. Organ involvement, reactions to SCT and various Chemotherapies plays into these decisions. One thing is for sure. Everyone is different.
With all of this info to consider, we went back home to wait 2 days for the results. On Friday, my mom drove up from CT to sit with me while I received the call. Does God know about these statistics?? Is he considering my chances?? Not sure. But I do know he is sure about what he wants for my life. I think I'll go with his plan.
At 2:15 I got the call from Dr Sanchorawalla. She congratulated us! We did it. Complete Remission! Less than 5% of Lambda proteins in my bone marrow- which is far better than what it was prior to treatment, and indicates no further invasion. Yup...that's right...We did it, ...shut the amyloid factory down. I say "we" because I could not have done it without all of you! WE did it together. You were with me in spirit, and in prayer, right beside me...rooting for me the whole time. I could not have made it without all of you. You kept me positive...laughing...and my eyes on the prize!
Wow! I am ecstatic. Yet as I sit here, I am having a hard time putting my feelings into words. (hard to believe i'm at a loss for words right??) Part of me knew this would be the outcome, part of me couldn't believe this was the outcome, and all of me wants to shout it from the rooftops! Merry Christmas!
I barely heard the Dr. tell me that I need to make an appointment for 6 months to have all these tests repeated.
Right now I just want to enjoy the holidays with my family. I am incredibly lucky...and I am alive. Tomorrow is not just another day. We never know what tomorrow will bring and that life can change in an instant, but I know that its a new beginning for me. With new blood, new hair(OK...just a little), and a new lease on life...i'm going in...cover me!
Love and Peace to all this holiday season!
Cheryl
Sunday, December 19, 2010
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I was informed of your Christmas gift Friday afternoon and couldn't be happier for you! What a fighter you are. Keep up the good work and enjoy today for the gift that it is.
ReplyDeleteCheryl,
ReplyDeleteWe are so very happy for you. I have been checking your blog all weekend hoping for a positive post and you just made my day! What a great Christmas gift for you and the family!
Cheryl, I can't tell you how thrilled I am for you and your family! I think I'M going to find the nearest rooftop and give you a huge WOO-HOO shout out! Congratulations and abundant Christmas blessings. Joy!
ReplyDeleteCongratulations on CR! Robert too is in CR! Hallelujah! Futher, the doctors at MGH expect that he will recover from the GVHD as well. Everyone is hopeful and this week has been his best by far since the SCT. We too were HOME for Christmas. We are so happy for you! Much love and best wishes for continued health and recovery from the SCT in 2011. Bunches and Bunches of Hugs.
ReplyDeleteMartha and Robert
Yeahhhhhhhhhhhh! Power of positive attitude and faith! Congrats and a truly wonderful 2011! Julie M
ReplyDeleteWonderful, wonderful. I'd been nervously checking your blog in December. I'm so glad! What a way to start 2011. Thank you so much for sharing the journey. I will remember it during my own painful times. That's how we help each other. :-)
ReplyDelete~ Jacquie
I check your blog all the time to see how you are doing, and continue to pray for you and your family. I am thrilled beyond belief and praising the Lord for your great results. How encouraging to know that this horrible disease can be held back. We are still struggling with it, Bob hasn't heard good news like you... yet... but we are certainly uplifted by your news! Thank you for sharing your journey, you have inspired us.
ReplyDeletePatra Bugg
Good bye to 2010, and HELLO 2011! Great news, Cheryl! What a great Christmas present! See ya in and around the town. Continued prayers, Mark and Linda
ReplyDeleteHI Kurtzs, this is my 2nd try at posting a comment, i have a very difficult time doing anything on the computer. i can not figure out what i do wrong. anyways just checking to see if you had done any new postings. love uncle jack
ReplyDeleteHI, Cheryl....Finally catching up with your blog and all your good news! You give me such hope! I can't believe that MONTHS have gone by since I met you a BMC. So far, so good for me. The Kappa numbers are coming down...slowly but surely. This has been such a nasty winter that I don't even mind being home most days. :) It does feel like life has been stripped down to the basics: husband, kids, grandkids, close friends, our church. I do feel lucky!
ReplyDeleteSteve and I would love to come by for a visit and a cup of tea.Or you and Jeff could come here.....
Hope to see you soon. My daughters ask about you all the time.
Love....Cilla