This week I’ve come to some realizations that make me kinda laugh. I think about half of my followers are glad they don’t have to log online every single hour of every single day to get my updates- I’ve tried to keep it as simple as possible so there’s a landing dock and hopefully the latest information is there for you to catch up on… and then there are the rest of you who are knocking on my doctor’s door’s at this point trying to find out “Helllloooo is she okay? What’s next? Have medicines changed? How’s she doing spiritually and emotionally? Why don’t we know anything yet? Is she ready to talk now? Did she try the supplements I sent her? Oh, you want me to come visit right now, ok??” I feel ya. I feel all of you, trust me and I love you all for the ways you check in on me and I hope I everyone can understand I try my hardest to express my thoughts, feelings, and perceptions in graceful ways (trust me there are times my thoughts are pretty ugly!) and I also want to communicate my health news in an accurate manner (because I know I can sure butcher it!) so I try to find balance in that and on top of it all I want so badly for my writings to be led by the spirit in this journey rather then from any scared, blind moment from the heart, which is usually when it’s easy to write because it’s like our minds are molded to have negative diarrhea of the mouth when things aren’t going our way.
So to pick up where we left off.. my mom, husband, and I went to two large cancer centers for second options, very much blessed and encouraged by my team here in OKC. We liked the modern/forward-thinking approach we found in Boston’s Dana Farber Cancer Institute but then we felt much more at home when we got to Nashville’s Sarah Cannon Cancer Center and the doctor there who was a female heroine if I’ve ever met one! She was so eloquent when she spoke but careful never to speak over our heads. She had a very specific clinical trial picked out for me, which was the one we were hoping (through our own research) that someone would be able to get me on since it wasn’t offered in OKC or anywhere close by. For those following my cancer closely this trial is called BGB324 and we left Nashville with all the plans to return the next week to start on a heavy-travel-fight-for-my-life plan. This trial included an AXL inhibitor to treat my kind of cancer rather than using TKI inhibitors (which we’ve done since last May. All the science pointed us in this direction and even though our little family was getting pretty used to having my energy back and feeling pretty mighty at home I came home from TN to OKC feeling a new sensation in my arms and back of my neck which all got progressively worse day by day. This area had never hurt in relation to my disease before so I tried everything from IcyHot, massages, heavy ice, to heavy heat all on top of my pain medicines trying to find any kind of reason – I did too much, I held Bentley too long, I slept on bad pillows or carried too much at the airport. Excuse excuse excuse until I woke up and knew that something was wrong. . . One call to our Wonder Woman nurse Robin and she suggested we go into ER. So my mom escorted me, yet again, to the emergency room where they did a 3 hour MRI of my brain and spine to see if they could find what was causing all the pain.
Just in the last few months since my last MRI scans (& remember that is separate from the recent CT scans that had us looking for a new way to manage the new lung and liver mets that were found) new cancer has indeed developed and moved. And boy did it move!
So, what we are looking at now is an answer to why the increase in pain was so dramatic. The last (2nd) time I had brain radiation it wasn’t because the 18 mets came back it was because of a new type of cancer growth I explained called Lepto Meningeal Disease which is an extension of my kind of cancer that is more creepy crawly then a tumor type met. This lepto disease made its appearance back then but was managed. Unfortunately it is back and has traveled and penetrated the lining of my Central Nervous System and is now presenting up and down my spine and in to new areas of my brain.
I’ve been in the hospital a few days because they can control my pain better than if I was at home. After meeting with my radiation oncology team they explained what’s happening and what options I have. Because this is a very fast and aggressive cancer, time is of essence for decisions. My doctors were tender and compassionate and through tears of my reality I decided to start radiation on my entire spine immediately (holding off of the brain for now). While I’m in the hospital I will be transported across the road to the cancer center to receive two doses of spine radiation per day. Once I’m home I will receive one dose per day, receiving a total of 15-20 treatments. This go around I’ll be on my tummy for treatment rather than facing up- sounds like it would be more comfortable but I promise it’s not at all!
My oncology team is putting me back on Tarceva and we’ll need to come up with a different plan to treat the growth in my lungs and liver since the lepto disease precludes me from the clinical trial in Nashville. There is just not enough study and knowledge in successfully eradicating my kind of cancer….YET!
I told one of my doctor’s yesterday that my faith is stronger than ever and I believe in the miracles that he doesn’t. (His reality: He gave me 12 months max to live. My reality: I serve a fact changing God!) After all, I’ve defied the odds thus far with all your warring prayers and steadfast support! I’m reminded there’s nothing too big for me because God is WITH me His Power is IN me. “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” John 16:33
To 100% update you I’ve been struggling with some blurry eyesight which makes typing on my phone somewhat aggravating. But anyways I saw an ophthalmologist and he confirmed I have Radiation Neuropathy that is not a super common but a not unheard of side effect from brain radiation, let alone twice. Next known steps to attack this problem is to meet and consult with a new Retina Specialist who is promised to be able to do a procedure on my eyes. This procedure cannot reverse the damage already done but it is known to be able to prevent it from getting any worse. I had an appointment set up for this last week but like everything else we go with the flow and since we got the second opinion doctor appointments set up so quickly we had to postpone the Retina doctor. And now that we are back and have landed myself into more radiation we will move that back even more until we are for sure done with that.
So many people, in fact all of you, are fighting some kind of battle and if it’s not now~ enjoy every minute! ~ because the promise is real and this life is not meant to be meaningless and your trailing time may look very similar to mine or very different than mine but regardless of how it looks it is meant to be met with Truth and Light to bring meaning to each and every circumstance!
I’ll be somewhat lethargic the next few weeks and you all know where and what to pray for at this point! If you feel so inclined to send physical mail this is our first official notice that we have closed on our house yesterday in the hospital and a bunch of friends and family have helped Adam move us! Please contact my parents, me or Adam direct for our new address. God is good, all the time.