Sarah’s Story

Site created on January 2, 2020

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place.

First I wanted to explain the title of my site: my tumor is located on my sciatic nerve. When most people hear sciatic nerve they think back. Well mine is a little lower.....donkeys are a part of our life so naturally my family thought I should include the King James word for donkey. Our pastor uses the KJV so I told them that if he used that word during the Christmas Eve service I would include it......well he didn’t include it in the sermon but it was in GIANT letters on the big screen in a hymn we sang! They all said “it counts”.......so I apologize if I’ve offended anyone but Christmas Eve I went from laughing to crying over the word ass because I took it as proof that God knows exactly what we are going through & He too has a sense of humor! The second part of the name is my mom has always called me Sassy or Sassa - I’m sure it had nothing to do with my behavior growing up! So S-ass-y just seemed right.
Synovial Sarcoma is rare, 1-2 per million so we are thankful for the opportunity & ability to come to Mayo, even though they aren’t close, because they have a Sarcoma Team. The weeks & months to come are going to be a fight but it’s the path we are on & will walk in faith.

We appreciate your support and words of hope and encouragement and most importantly prayers.

Thank you for visiting.

Newest Update

Journal entry by Sarah Colley

A quick update about my latest appointments for those who only follow here…..
We went back to Mayo last week for my 3 month-ish scans. Technically mid-January was 3 months since my previous scans but they couldn’t get them all squished into 2 days until February. I was a little anxious about putting them off an extra 2-3 weeks because if something is amiss the sooner it’s caught the better but I just had to trust God’s timing. And just like all the daily provisions He provides, this timing was no different. The boys got to take a guys skiing trip to Colorado with friends mid-January & it’s hard for Jere to take off 2 weeks back to back. Then there was the giant ice-snow-rain storm that swept through this half of the country just a few days before we left. By the time we were on the road Saturday the roads were mostly clear (I’m sure all the people who are used to snow & ice would consider them just fine but we still don’t like the icy-snowy patches that the locals just plow through at speeds that make us nervous), but we got to see all the beauty of the frozen landscape. The ice was gorgeous! It just glistened in the sun. I know it was a mess for the people who lived through it but for us just passing through on the highway it was magical. It really looked like the silver tinsel trees. I can’t tell you how in awe I was of the beauty & pictures just don’t do it justice. Then a little farther north everything was snow covered. We stopped for the night just north of St. Louis. The next day had lunch at our favorite stop in Waterloo, Iowa: Single Speed Brewery. The road in North Iowa on the 2-lane part was a little slushy but not too bad. 
Monday started with labs & chest CT & an MRI that took a bit longer than usual, but that just gave me extra time to pray & then nap, nothing else you can really do when you are strapped to a table & squeezed into a tunnel for an hour or 2 ;P  Barely an hour after I was done with the MRI my surgeon messaged me that my scans looked good! No evidence of recurrence & the nodules in my lungs are stable (still praying they are just random & not cancer-related). Praise God! Again: timing. I know several others who have to wait days to get their results. I didn’t even have to wait until my afternoon doctor appointment with my radiation oncologist. I think she was disappointed that she didn’t get to tell me 1st. She mentioned something about doctors liking to be the the one to deliver the good news 1st. But she did get to show me the images 1st & where my surgical site is continuing to heal. It’s been 20 months & STILL healing, There are days when I wonder if I’m at the end of the “improving” phase post-treatment but my body apparently isn’t. I’m so thankful that Mayo is set up to give the doctors the results of the scans so quickly.
And to bookend the weather timing, the mid-West is again being hit with snow, rain, wind & tornado watches. Thankful we aren’t driving home this week. God squeezed my appointments in the week between the 2 bad weather systems.
Overall things are good. Still trying to get the brace thing worked out. I got a second custom the week before we left (the 1st one was all wrong) & I really liked it but while we were gone it started to rub a wound on my shin so back to the off-the-shelf brace I’ve been wearing since July that doesn’t quite fit. Hopefully I will have the remake any day, the company is in California. It really did feel better than I realized until I was back in this one. So I’m optimistic that the next one will be dialed in & be as close to perfect as one can get.
Next set of scans will be May-June. This will mark 2 years since my surgery (June 8, 2020). The 2 year mark is where they will let me go to scans every 6 months (assuming they are stable). Once a Synovial Sarcoma patient reaches this point without recurrence or metastasis everyone lets out a deep breath. At 2 years the 5 year survival rate is 80%. What does that mean? It means that I’m 80% as likely as someone who doesn’t have cancer to live for 5 years after being diagnosed (we’d like it to be 99% but 80% isn’t awful). The key to all this is for it not to show up again anywhere, especially in my lungs. As I type this I had a passing thought that it’s interesting that both my sis & I pray for our lungs! (She’s just over 4 years since her double-lung and liver transplant 🙏🏻🙌 so thankful for these years!). 
So timing…..we like to plan & schedule & set times to do things, thinking we are running our lives, but in reality it’s His timing & life is more peaceful when we submit to & trust in His timing (oh if I can remember that more often-like when stuck in traffic or any other time I feel like things aren’t goin my way). 
As I sat in the waiting room for my MRI & scrolled through Instagram (a definite time-suck) a suggested account to follow was showing Psalm 34:4-7, verse 4 just so happens to be my phone’s lock screen since my diagnosis. Talk about His timing….the comfort it brings to know He knows exactly where I am & what I’m going through.

1. “I will extol the Lord at all times; his praise will always be on my lips. I will glory in the Lord; let the afflicted hear and rejoice. Glorify the Lord with me; let us exalt his name together. 4. I sought the Lord, and he answered me; he delivered me from all my fears. Those who look to him are radiant; their faces are never covered with shame. This poor man called, and the Lord heard him; he saved him out of all his troubles. The angel of the Lord encamps around those who fear him, and he delivers them.”
‭‭Psalms‬ ‭34:1-7‬ ‭NIV‬‬

I trust my Lord with the timing of all this as well as the results. He already knows my days.

A person’s days are determined; You have decreed the number of his months and have set limits he cannot exceed. Job 14:5
(Jesus said:) “Can any one of you by worrying add a single hour to your life?” Matthew 5:27.

Thank you all for your continued love, prayers & support! Love & hugs to you all!

Patients and caregivers love hearing from you; add a comment to show your support.
Help Sarah Stay Connected to Family and Friends

A $30 donation to CaringBridge powers a site like Sarah's site for one month. Will you make a gift to help ensure that this site stays online for them and for you?

Comments Hide comments

Show Your Support

See the Ways to Help page to get even more involved.

SVG_Icons_Back_To_Top
Top