Set your Heart on Him
In my last post, I mentioned some progression in my lung, particularly concerning my hilar lymph nodes. I also had an MRI of my brain, which revealed new metastasis. This situation has presented us with new decisions to make. I will share all that, but first, I’d like to share our spring break.
I love spring; it might be my favorite season. The days are longer and sunnier, and they remind me that summer is just around the corner.
Thank you all for checking in and praying for our family; I know I have said it many times, but your prayers stabilize my foundation of faith.
We headed west!
Given my upcoming treatments, we knew we wanted to make the most of this time together.
We loaded everyone up and headed west to my cousin Khrissy's house in Durango. The boys did a little skiing; Ryan Kate did pretty well for her first time. I sat this one out. First, I'm not very good and can't keep up with Josh and the boys. Second, I'm tired.
There is a level of exhaustion that people with cancer feel. It is hard to describe; it's more than just being a little tired. I have tried for almost three years to push this away. I also had a round of chemo on March 3rd, which kind of wiped out my energy for a bit. I try to always be on the move; when I am idle, I get sad. I don't like to be sad. I tend to overthink myself in that dark place, the place that steals my hopes and my dreams and tries to steal my faith. When I get to that place, my time there is short. The Holy Spirit is real; he whispers loudly to me, Karly, this place is not for you.
“Your faith may be just a little thread. It may be small and weak, but act on that faith. It does not matter how big your faith is, but rather, where your faith is.”
Durango is one of my favorite places. My cousin Khrissy, her husband Bruce, and their kids Zoe and Chrisoff have given my children a Colorado family, much like the one I had while growing up with my Aunties.
We have created so many memories in this little town; this trip was no exception.
We rode the Durango and Silverton Narrow Gauge Railroad, skied, ice skated, and visited the Wolfwood Refuge.
We left Durango and headed west. We took Highway 160, passed through the Four Corners, and made a few stops along the way. Then we got on SR 64, up Desert View Drive, right into the South Rim of the Grand Canyon, and continued to Tusayan, AZ, about 30 miles ahead. Just as we entered the Grand Canyon, they shut down 64. A massive winter storm hit the area right when we pulled in, dumping over 4 inches of snow. Mind you, this is the South Rim, not the North. The conditions worsened as we slowly made our way through the Grand Canyon. We couldn't turn around because the road was closed. The stretch of road we were on should have taken about 30 minutes; instead, it took us well over 3 hours. Many cars had slid off into ditches, and RVs were stuck; finally, our suburban reached an incline we couldn't climb, leaving us stranded. We weren't alone; many other cars were in the same predicament. Josh and I felt a bit nervous about being stuck for much longer. We had plenty of food but only half a tank of gas. Eventually, a park ranger came through and instructed us to sit tight, informing us that a snowplow was on the way to help us all get out. The kids handled it like champs and found it exciting.
Please enjoy this short video I created to capture our snowstorm adventures.
The weather was a bit colder than expected, but luckily, we had our ski gear. No pictures of the Grand Canyon will ever capture how breathtakingly beautiful it is. I highly recommend you put it on your list if you have never been.
Thank you, God, for your beauty and for allowing our family to make these memories together. On our way home, we stopped by Bearizona; there were bears.
What’s Next
As I mentioned at the beginning of this post, I have had progression to my lymph nodes as well as my brain. On March 3rd, the Young Lung Cancer Initiative shared an updated video that included my recent eligibility for surgery.
I know there have been many questions about why surgery is happening now; I also recognize that there have been a lot of new friends since my diagnosis almost three years ago. I will provide a quick recap (I have blog posts explaining more details).
On June 10, 2022, I went to the ER for neurological symptoms, which led to a brain CT scan that revealed three masses in my brain. This prompted further testing, which showed a mass in my right upper lobe. I was hospitalized for five days. While I was in the hospital, the mass in my right lung was biopsied and confirmed to be adenocarcinoma, non-small cell lung cancer. There was one mass in my lung and three in my brain; I was diagnosed with Stage IV lung cancer.
As of today, these are the treatments I have received:
June 2022 - August 2022: Five rounds of Gamma Knife radiation for the brain masses.
July 2022: A biopsy confirmed that I had the EGFR Exon 21 mutation and started Tagrisso.
November 2022: The tumor in my right upper lobe had decreased by over 90%; I received stereotactic body radiotherapy (SBRT) for the remaining tumor. (SBRT is a precise, high-dose radiation therapy.)
February 2023: We sought second, third, and fourth opinions. I consulted with the top oncologist specializing in and actively involved in research for my specific type of lung cancer. I visited two doctors in Boston, one at Dana-Farber and one at Mass General. Our final stop was MD Anderson in Houston. I am grateful to have established relationships at these world-renowned hospitals. If we had gone to MD Anderson first, we likely would not have sought other opinions. Most of my treatment team is currently based at UT Southwestern in Dallas, alongside a few specialists at MD Anderson. My treatment plan remained unchanged; everyone agreed that Tagrisso with surveillance imaging every three months was the appropriate course of action.
August 2023: Routine imaging revealed oligoprogression to my T12, left ninth posterior rib, and a suspicious lymph node in my lung. I underwent my second bronchoscopy to biopsy the lymph node. However, no signs of cancer were detectable in my lymph node; thank you, Jesus. I completed two rounds of SBRT to my T12 and rib. Those two areas have since been resolved.
November 2023 - January 2024: I completed four rounds of chemotherapy. This was added to my treatment plan based on the FLAURA2 Phase III trial.
December 2024: A routine CT scan showed progression to my hilar lymph nodes, and a PET scan was ordered, which confirmed the findings.
January 2025: A routine brain MRI showed three new brain metastases, the largest measuring 6 mm, about the size of a pencil eraser. I completed one round of Gamma Knife radiation.
Dr. Antonoff has entered the chat.
Last month, I had a consultation scheduled with Dr. Antonoff, which was arranged before we knew there had been progression. I had been following her, and I knew I would be remiss if I didn't take the opportunity to be seen by her, especially since she practices at MD Anderson.
I have often said that God has had His hand in every aspect of our story. I am cared for by some of the best medical teams in the nation. Dr. Gerber, Dr. Wardak, and their nurses, Melissa and Bryan, it’s hard to describe how this team has taken care of me; they truly see me.
The first time I spoke with Dr. Antonoff, I knew she belonged on my team.
She had done her homework, knew almost everything about me, and had studied every scan, test, and procedure. When she introduced herself to me, she said;
"Karly, I have four kids; there are ten years between my oldest and youngest. I'm not going to pretend I know what you are going through, but I can imagine that you live in a place of deciding whether to keep working because you have four kids to send to college or to stop and spend as much time as possible with your family. I want to take that away for you; I want to give you decades."
She indeed saw me.
Josh and I will be going to MD Anderson on March 19th. The 19th and 20th will be for imaging and appointments. On March 21st, I will have a right upper lobectomy with mediastinal and regional lymphadenectomy. I expect to stay in the hospital for three to four nights. The anticipated recovery time is four to six weeks.
Oh, how He loves us
I have spent much time talking to God and reading His word. The Bible is a love story. From the beginning to the end, the love God has for every one of us is evident. God has set His heart on us; I will set my heart on Him.
Thank you for reading this, caring about our family, and praying for my complete healing. I’m incredibly grateful that three years have passed, and I’m still sharing my story. My deepest hope is that when you see me, you see God and understand that He is the author of my story. I pray that I can represent God’s goodness, faithfulness, and His unchanging love.
“In the same way, let your light shine before others, so that they may see your good works and give glory to your Father who is in heaven.”
Lastly, on Saturday, March 29th, our family will participate in the GO2 for Lung Cancer's 15th Annual 5K Walk/Run in Dallas. Josh and Rush are running the 5K, Rhet, Ridge, and Ryan Kate will take part in the kid dash, and I will be there cheering everyone on. I would love for you to join us. I've linked some information.
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