I know it’s been 3 months since I posted an update! We’ve been going to Boston once a week since December with the exception of 2 times. It looks like that will be our schedule. The cycle of taking the drug is 3 weeks, so we won’t have to go to Boston on week #2. Ray will see if they will allow me to have blood work done at Harry Gray on week #3 and sent to Mass General. We should find out about that within the next week.
Anyway, I’ve had two scans since last writing and both have been stable. The one I had March 1st had shrinkage in the lung nodules. The scan I had last week showed shrinkage of 2 of the 3 tumors in my liver! When we went to my appointment yesterday I asked to see the scans and it was nice to see that the tumors are so much smaller than when we began this journey almost 2 years ago. Another exciting thing is that my liver is also shrinking–this is a GOOD thing! It means that the inflammation is going down and the drug is working!
The large tumor, that was 6 inches when diagnosed 2 years ago, is now 3.5 x 2.2 inches. This tumor was 3.75 x 3 inches on previous scan. Another tumor in my left lobe was 1.93 x 1.9 inches on previous scan, is now 1.73 x 1.73 inches.
New sweatshirt. Bile Duct Cancer Messed With the Wrong Woman!
I have to watch my phosphate levels on this drug. I think I’ve got it down pretty good now. I can’t have any fish because it’s way too high. I can have tuna fish and shrimp though. I could have one piece of pizza, but I’d rather go without. If I stick to one serving (1/2 cup) of vanilla ice cream, it’s high for a snack, but I can do it. Haven’t done it yet though.
A lot of our time has been spent with our beautiful Clemmy!!! She lights up my life! I’m so in love. And, of course, so is Ray. Heather calls him the baby whisperer! She is growing day by day and is a bundle of joy. She’s full of energy and likes to be moving around even though she’s not able to crawl yet! She likes to stand up and sit down in my lap and smiles all proud of herself. She tells a good story too! And we’ve gotten a few laughs out of her too. Can’t believe she’s just about 4 months old already. We are so fortunate that Jason and Heather live nearby. Jason picks Clemmy up from daycare and stops by for about 1/2 hour several days a week and we’ve babysat numerous times and have had for entire day’s also!!! Loving every minute of it!
We’re hopeful this drug can do some damage for a while. Downside is that I do have fatigue. If I do anything around the house, it exhausts me beyond what is very hard to describe. It does aggravate me, as I like to be doing something. For the most part I’m conserving my energy for visits with Clemmy and social events. My mouth also is sensitive to certain tastes and gets dry. I’ve got some things to help with that. Important thing is that I continue to not have any pain. I’m hoping to do an update in a few weeks when I hit the 2 year mark. I’m enjoying proving that first doctor wrong!!!!
Just out of the bath!
Yes she is the coolest girl ever!
Asleep in swing at Nana & DeDa’s.
Hanging out with Mommy.
Yay for Nana,Deda and Clemmy! Such great news Bea💜
Thanks Linda.
So happy to read this, Bea! Most importantly, that you’ve had shrinkage 🙂 and aren’t experiencing any pain … secondly, to see pictures of your adorable granddaughter! I’m actually at work right now & just called Sharon in to show her the pics and she said that I missed Heather last week, while I was in Florida… damn it!! She’s super cute! I pray that you will continue to heal! xo
Thanks Melanie. I’m a fighter and won’t give up that’s for sure. Heather came here right after she left IPMS last week. Too bad you missed her. Clementine is such a joy in my life! Love her so much and thankful that I get to see her all the time! She’s the most beautiful baby to me, but of course, I’m biased! Your little guy must be getting big too! Thanks again Melanie!
So happy to read the update. Loved seeing you when I was home and the power of prayer is strong! Your little Clemmy is so cute!
Jean, the power of prayer has gotten me where I am and will continue to bring further along with this fight! Loved seeing you too! Love my Clemmy! Thanks Jean!
What a great update! And Clemmy is adorable! They bring such joy, you truly are blessed.
Thanks Sue. I really feel that I am blessed. I’ve got people praying for me all the time and I’m convinced it’s helped me in this journey. And, yes, you know the joy a grandchild brings. Clemmy is the love of my life! I enjoy her so much.
I am so excited about the shrinkage Bea! You keep proving that Doctor wrong! Such good news! I’ll talk to you very soon ❤️
Thanks Julie. We are too – especially that the liver inflammation is going down. I’m thinking I have to drop that doctor a note on my 2 year anniversary, since he told me I had only 1 year! See you soon Jul.
Love it, momma! We’ve come a long way. So proud of you. And love these pics of the cutie pie!
Haven’t we my Julie. It’s amazing when you think of where we were 2 years ago. I thank God, all the prayers, support and love and my dream team at MGH. And of course it goes without saying all of you for your love and support. Some of those pics were taken last week. I swear if she could crawl or walk, she’d just take off. She’s moving all the time! Love you
I thought something was going on …. When I saw you let your hair grow out white because I always remember it being so black. You never know in life the crazy things that happen. But stay positive and strong and eat lots of veggies…. I wish you lots of love and many prayers to you and your family. I’m 6 years Cancer free on May 26 so I can relate to how you must be feeling. Stay POSITIVE…..Remember the fun Summer’s with the girls from ANS. Lots of good wishes
You were right Karen. What happened was my hair thinned so much that I shaved my head! I wore a wig for several months and then it started growing back. The texture is not back to normal yet so my hairdresser hasn’t colored it yet. The white was okay at first, but I need my hair color back! I’m lucky that I don’t have any pain. Congrats on being 6 years Karen. Then you know how this feels. I’ve been positive most of the time. Remembering the summers with the girls of ANS is enough to make me laugh!!! We go to Misquamicut for vacation every year now and I always take a walk by the big house we had on First Street, which looks different now. Where those idiots hung the ‘young boys wanted single and free’ sign!!! Thanks Karen
SO happy for the great news! Love the pics of Clemmy. 🙂 Thinking of you lots. xo Love, Bren
Thanks Brenna.