Marisa says: I don’t know what the word is for a group of doctors, if there is such a word. There are some neat ones for animals, but I just couldn’t think of what would fit. Gaggle of docs doesn’t seem right…bevy, exultation…so I came up with my own word…a determination, because that’s what it feels like when you see five different doctors in five days, and they all come together to agree on the same plan.
Thursday, as you know, was the visit with the surgeon in Charlotte, and we came out of there with some new ideas. Last Friday, we were at Hopkins, where the doc there confirmed the approach suggested by the surgeon and added some new thoughts to the mix. Monday was the visit with our oncologist, who had been talking to everyone and coordinating the next steps. Tuesday was Scott’s stent replacement, where the gastro was rather matter of fact (no liver, no Scott) and threw his weight behind the next steps, and Wednesday we met with the radiologist who will perform the liver-directed therapy. We liked him a lot. He’s a good fit for the team. And Scott has decided to proceed with the SIR-Spheres. We need to do that first, before the chemo-embolization, due to the particle size (first small, then big). The first step is to get insurance approval. Then, they perform a “mock” procedure to map Scott’s liver vasculature, block off any extra vessels and make sure that too much radiation doesn’t leak out of the liver. If all goes well, then we will proceed with two treatments one month apart to irradiate the crap out of the tumors in Scott’s liver, then wait to see where things are before deciding to proceed with the chemo embolization.
In the meantime, Scott has started on Tarceva…which compared to earlier chemo regimens is supposed to be a walk in the park. One pill a day. From how it has been explained to me, Tarceva is supposed to keep things stable outside the liver to give us time to focus on the liver.
It has been a busy couple of weeks on our personal roller coaster. Originally, there was no plan to scan until after the holidays, but as we were reminded, we do not make the plan, we’re just along for the ride, and I think it worked out better this way, to be able to start the new year with a new plan.
Scott has been focused on all of this stuff, instead of getting into the Christmas spirit, but the boys are bursting at the seams, waiting for tomorrow. They are so excited to show us the presents that they made and picked out! I sure hope that sentiment is contagious. Time to turn on the Salsoul Christmas album and start cooking or baking something!
Merry Christmas from our house to yours! I hope you’ve got the Christmas spirit, too.
And, while you are sipping egg nog or noshing on some cookies, please be sure to keep praying BIG!
I am always glad to get your updates even though the subject is difficult. I am amazed at your strength and determination as you continue to move forward, always forward. But this is truly the season of miracles, and that is what I pray for for all of you. A Blessed Christmas and HEALTHY New Year.
Comment by Barbara Lore — December 24, 2011 @ 11:59 am |
I haven’t left a comment before because I am usually crying with joy and heartache all at the same time after reading your updates. Thank you so much for sharing this roller coaster ride with so many, you are in my prayers along with so many others. Thank you also for the wish of a blessed holiday season, I wish the same for all of you. Stay strong and please continue to update, you not only inform so many of the “ups and downs” but, you inspire people with your wit and faith.
Sincerely,
Tammy Jones (Tom’s sister)
Comment by Tammy Jones — December 24, 2011 @ 12:01 pm |
Merry Christmas Marissa! Thank you so much for your blog – it mirrors me and my husbands journey in many ways. We wish you love and light on Christmas and a positive 2012! Becky Saltoon
Comment by Becky Saltoon — December 24, 2011 @ 12:49 pm |
Perhaps a dose of doctors? But a determination seems to fit for your situation, not only because of the number, but because of the attitude you’re bringing. As I walk dogs and hike in the woods, I send waves of those crisp vibes down South, and of course they’re big. Merry Christmas and Happy New Year to all of you too! xxoo Kim
Comment by Kim Karman Dobson — December 24, 2011 @ 12:51 pm |
Dear Marissa & Scott,
Thinking of you this holiday season. It is all about the Spirit of Christmas and sounds like your boys are bringing it home for your all!! We bake the cookies, we clean the house, we run around shopping, we eat & eat…but really it is all about gathering together and being connected…in body & spirit.
I was thinking the other day of when Jesus returned to his disciples after his death. He was in a different body, but his Spirit was recognized as being Jesus. Of course, there was Thomas who didn’t recognize him right away because he was clouded with doubt. I wonder why Jesus chose to come again in a different body. For sure he could have come back the way he was. Anyway, I guess the most important message I came away with was his Spirit was recognized for who he was! Your Spirit shines as a witness to all. “It’s not by might and not by power, but by my Spirit says the Lord.”
May the joys of Christmas fill your hearts with peace and strength to carry you on your journey. One day at a time!!
We are with you…in Spirit.
Blessings and “Embrace the Day”…hugs, Jane from Michigan
Comment by Jane Cruse — December 24, 2011 @ 2:13 pm |
Wishing you all well this holiday season. I hope and pray for nothing but blessings to come from your new plan! Your strength and fortitude is amazing and inspirational. Thank you again for sharing.
Comment by Jennifer Roberts — December 25, 2011 @ 8:45 am |
Merry Christmas and I will pray BIG for your family.
Comment by Paulette heath — December 25, 2011 @ 10:21 am |
Scott, I just wanted to let you know that there is a liver directed clinical trial at NIH in Bethesda and the Principal Investigator is very communicative and articulate. I have met with him several times–he’s a hepato-billiary surgeon– and we have been very impressed. Both my husband and I are health professionals.
I too am in my 2nd year of this disease and have been receiving chemo at Hopkins. I will be entering a cell adoptive therapy clinical trial at NIH starting next week. The approach has been very successful with metastatic melanoma patients and now they are turning their attention to digestive tract solid tumors.
If you would like to communicate via email, just let me know.
All the best for the New Year, Karen
Comment by K. Nurick — December 25, 2011 @ 11:48 am |
Scott, Marissa, Max and Cole,
Merry Christmas and Happy New Year, keep plugging.
We love you.
God Bless,
Bill and Cheryl
Comment by Bill Bertram — December 26, 2011 @ 7:13 pm |
I’m praying and thinking of you all during the holiday season.
Comment by annehcharityhudley — December 31, 2011 @ 12:58 am |
Happy New Year Marisa and Scott! I hope you and the boys enjoyed the holidays. That Salsoul Christmas album is a long time favorite in our house too. I’ve continued to pray BIG for you all in 2012. Thanks for keeping us all informed. Lots of love.
Comment by Sheryl Stoessel Suarez — January 26, 2012 @ 12:20 am |