I apologize to those of you who wish I updated you more frequently. It has nothing to do with wanting to withhold information and has everything to do with me feeling like when I write about myself and my cancer I get anxious in the specifics of medicine and the things I don’t understand. I am also guilty of feeling as though writing or typing out what the doctors tell me is me confirming those facts that I don’t want to be factual. A few weeks ago I received an email from a new friend who said “the fact is you have cancer, but we serve a Fact Changing God!” And let me tell you what that was a game changer for me and I remind myself of that every day, and that really does help me.
But then there’s tougher days like last Wednesday when I lose sight of the big picture… But I don’t want to bore you with that yet- first I want to highlight the month of February!
I got through two a days radiation just fine, and I got to spend a lot of time with friends and family who drove me and spent time with me at the center. We still have not done follow up MRI scans to confirm how successful radiation on my brain and lower back was; that will most likely be done in early April allowing time for it to fully run its course.
The radiation did not help the pain in my lower back and each day that passed had me doubting I’d ever see a day where I could walk or bend and not wince in pain. But! Then I met a new doctor who was able to help with a simple caudal epidural and I’ve been pain free ever since! And a near perfect month has it been…
Bentley girl turned ONE on February 2nd, and we had a lovely time celebrating with friends and family. A little bit of makeup and no pain went a long way for this mommy that day and I will forever remember Beni’s first birthday as a perfect day shared with ones we love most!
Last May I didn’t know if I’d see the end of the year let alone throw my baby’s first birthday and be well enough to bounce around the room hugging our friends and enjoying a Royal Tea party. One happy mommy.
I have also been one happy wife!! Adam and I were able to celebrate Valentine’s with a country music concert and see a favorite, the Josh Abbott Band, who performed our first dance wedding song. A night out together in our boots was just what we needed.
I know. I’m spoiled. And how can this month get better? Well! I was able to travel to Kansas City where I was again spoiled beyond belief staying at the Raphael Hotel right on the Plaza and the weather was insanely beautiful allowing me the opportunity to WALK around for hours, all pain free, which I hadn’t really done in I don’t know how long. Our main reason for the trip was to see Phantom of the Opera which was just a dream come true for me because I had never seen it. And of course we were spoiled there as well and we’re given a backstage tour and spent some time with the lead actor who plays Raul, who is a friend of a friend and he was so kind. He and his team are like US Olympians in the world of the arts and we’re all so humble. It was really a trip of a lifetime for me AND I got to spend quality time with my mom and dad.
And then like at the end of every February I turned 27! Another milestone I wasn’t sure about when I was first diagnosed. But here I am and my friends, like always, spoiled me with a detailed birthday dinner with all of my favorite things!
February was great for all the exciting reasons highlighted above but also in ways pictures can’t capture. A very important friendship in my life was mended and restored. Notes from strangers about their faith being renewed through my story continue to pour in and a local business owner decided I was the missing link in their organization and they were so bold enough to name a product after me and adopt a program to give back to other cancer patients. I have also been able to get back in the pool at my fitness center where I’ve been healing as I imagine a dolphin would 😉 kidding. But the water feels like home and I’ve made many friends in the group water exercise classes. I hope you can all see the common thread here, that there is so much in my life that I have to be thankful for and there is no way that I could appreciate and be a part of these things if I had any other life lined out for me. Through my trials God has shown up. He’s answered prayers, He’s using people, He’s protected promises and extended grace upon me in a way that makes a stranger in a hot tub say to me “your light is just infectious and I felt like I needed to tell you that.” Friends, it’s not my light, it is God’s finest work.
In the midst of all of the above Feel Good days I had routine scans (last scans showing the leptomeningeal cancer spread to my brain and spine) showing even more cancer progression below my lung and in my liver. These small tumors flagged my team because this meant my systemic treatment wasn’t controlling this new growth so they decided to do a biopsy to test for a new mutation. That right there is enough to rock my faith a little. I don’t like admitting it but each time the bad news comes I ask “WHY? What did I miss the last time?” I had a biopsy done and within hours of going home I found myself back in the closest ER and then transferred to my hospital for a direct admission so my own doctors could access my files and be involved. I had some minor bleeding from the biopsied site which isn’t uncommon in that type of procedure so once found and medication was given to control my pain and anxiety about bleeding out (a major fear) I was A OK.
The sadness and anxiety grew inside over the week and eventually led me to a quiet place where I could get on my phone, knowing where I could find and read scripture to pick me up. The words that first grabbed me in a social media post led me to a favorite song of mine and for the first time in my life I was urged to get on my knees, all in the midst of some real ugly, mourning tears and snot everywhere crying. A few seconds later I was interrupted by a phone call which happened to be my nurse Robin (who I believe to be one of my angels here with me) and the first thing she asks is why I am crying and after our exchange she told me the results of my liver biopsy came in early and the doctor wanted to see me in the morning. I was supposed to hear the news 3/22 which was another two weeks and I knew that the breakdown I was having was partially rooted in my fears of dwelling over the next couple of weeks so the call was a huge relief and answered prayer for me. When we hung up I felt like angels were all around me and I was metaphorically held/hugged/comforted like a baby and spoken so clearly to “don’t worry child, I am with you and there is no need to worry.” I was covered, held, calmed. A day I will never forget. >>>The only other day I’ve ever felt that way was the day Adam told me about Boston when we first started dating. We were sitting in my living room and the words poured out of his mouth like a scared, shamed young man and I was overcome by a supernatural peace and comfort greater than I alone could have ever provided and from that moment forward we started down a journey that forever changed all of our lives. I wasn’t aware of Jesus Christ at that point in my life. But that was my first personal encounter with His presence and it wasn’t until I was invited to life.church.tv that any of it started to make sense.
So here is where we are at after meeting with my team this week:
The Initial diagnosis of the protein EGFR exon 19 still presents in the bio marker tests we got back. This means that the new cancer cells have not mutated to the expected T790m protein as anticipated. The other test for PDL1 expression (RE the possibility of me being put on immunotherapy rather than chemo) did not come back from the specialty lab. The test is either not complete or they weren’t able to get enough tissue for complete sampling. The latter is probably true after the passing of this much time and the doctor’s initial concern that my cancer spots were hard to get to in biopsy without putting me at risk. Since my initial tumors are still showing to be responsive to the Tarceva and continue to abate them, my oncology team has decided the best course of action is to keep me on Tarceva. For the new cancer “clone”, they have decided to augment my treatment with chemotherapy. The combination of Carboplatin and Avastin have demonstrated super power fighting agents in studies for my kind of cancer so we are hopeful to arrest the progression and continue with my wellness plan of controlling nerve pain and gentle swim therapy.
As you can imagine, I was disappointed that I could feel so good on the outside and be so betrayed if you will on the inside. We have been prepped that my kind of cancer can be progressive but with my mustard seed faith you all know how that I’m hoping for scans to be clear, not show what they’re showing!! I can see now why people give up. Honestly I can empathize with the deepest darkest misery someone who feels alone and abandoned must feel. But for me, no matter how dark the devil tempts my heart and head to get, I’m brought back in an instant when I think of God’s unique and unfailing love for me. Remember what my friend told me: we serve a fact changing God. So while all the earthly facts swirl around me I’ll be taking one step at a time listening to the spirit inside and hopefully live out the legacy I am supposed to, reminding myself of the day I was brought to my knees and found a spiritual encounter strong enough for me to share with others.
This next week, I’m traveling with family back to some roots in Arizona where I will be rich in love, baseball, and sunshine before I return to start my first round of chemo. Just what the doctor ordered. 🌵☀️😎
I thank you for your loyal following and continuous prayers.