I was thinking about the time my mom and I went on our first trip together; just the two of us. It was 5 years ago and we were supposed to be meeting up in Newark, she flying from Texas and me flying from Tennessee and then on together to Rockland, Maine where we would travel by rental car to Kennebunkport. We were excited because we had never been there before, we wanted to see lighthouses, and I was eager to have my mom all to myself. That is rare when you grow up in a house with three other siblings and when you are grown and travel over holidays, it’s always a big group.
I got a call from her that morning. I was still asleep and she was at the Houston airport. The weather along the northern east coast was severe so our flights had been cancelled. My husband got on the phone and started making other arrangements for the two of us. We ended up both flying into Chicago about the same time. We took the train into the city. I got some great photos of my mom looking like she was living the thug life on the train. We stayed at a nice hotel after walking blocks and blocks, went to a nice dinner, and had a good night rest. We were supposed to fly out that afternoon, but my mom and I had a feeling if we got to the airport very early in the morning, that we just might get on as stand by and be able to have the whole day in Kennebunkport. If nothing else, we would spend the day at the airport people watching and visiting. It doesn’t take much to entertain us.
We did get on that flight! We were not prepared for the weather at the end of May where it was cold and rainy the entire time we were there, but we were just happy to be there at our quaint, little cabin. We had a GPS that I am not exaggerating everywhere I drove it would say “re-routing” and have me making u-turns constantly. Of course this became something we constantly said throughout the trip and now these years later sometimes it comes up in conversation, “re-routing”.
I am reminded of this because of my last oncology appointment and the scan not revealing what we had hoped for and so many have been praying for, even though I wasn’t surprised by the news. I just had a feeling. I was overwhelmed by how quickly I needed to make decisions and these aren’t decisions such as do I want to go left or right. This is a decision based on if I have the potential to live or die with a crap ton of information coming at me at lightning speed. I’m glad that I recorded the conversation to be able to go back and hear it all again. I highly recommend this even if you have another person at your appointments with you. I learned this from my amazing friend, Lori who has done this at several of the appointments that she has been with me.
Noel and I left very overwhelmed and as he drove out of the parking garage he said, “I don’t know what we should do. What do we do?”
I didn’t hesitate, I said, “we pray because God has never failed me”, and as I was saying this I began to cry and was searching for a tissue in my purse. I didn’t carry tissues in my purse until just recently when my sister-in-law sent me a very sweet care package: Sunshine in a Box that came with two packages of beautiful tissues otherwise I would have been digging through the console of the car for a rough napkin trying to keep all the junk on the console from falling off. As I looked in the pocket where I keep my prescription sunglasses and swap them out several times a week with my glasses, the silver cross that I have had since I was a kid was face up where I could read the words: God Loves You. I got this as a church visitor, I can’t remember the church, I can’t remember which friend I was with, but I’ve been carrying it on my person for so many years. I usually forget I even have it, but I thought it was in my wallet. Yet, no, there it was and I was saying those very words to Noel, I pulled the cross out and said, “see, God has never let me down”.
I knew we had decisions to make and very quickly, but just like when we went to M.D. Anderson I prayed for a very clear answer that our decision of what to do wouldn’t be difficult and that day not thirty minutes after we left the appointment the nurse called me to tell me that the clinical trial was put on hold even though I was pretty certain that I didn’t want to participate in phase 1. We flew back to Nashville and I felt like we were on the right track.
I prayed about this, my husband researched, my cousin researched, I researched and it really comes down to what I want to do until I can no longer make medical decisions for myself. I put my trust in God because I just get signs all of the time throughout my life and even though I feel like I’m being pulled in another direction, when I trust my gut (God), it’s the right decision, when I have not, well we won’t go there. That’s a 30 page blog and stories you would think are completely fiction. I woke up Thursday morning with clarity, feeling like certain things had just fallen into place.
When my mom was diagnosed with cancer last summer, I would have never imagined that I would be diagnosed with GBM months later, but we just got re-routed. It happens. And just like our trip, I think about how good things still came out of it. I have met people that I would have never met or grown closer to others if I wasn’t on this re-routed path. My mom has taught me so much about rolling with what life throws at you. She is the strongest person I have ever known.
I know some of you may think that I am contradicting myself when I state that God has never failed me because a lot of you know some of the tragedies that have occurred in my life, but my faith is what has always kept me going. It’s what makes get up every morning and embrace each day with gratitude instead of feeling sorry for myself, it’s what makes me live a life with no resentments toward others and the ability to have empathy for others.
I look at it like this, when I had that first seizure and backed into the school bus and my children and no children or driver on the bus were hurt, I didn’t hit a pedestrian or a pet that was an absolute miracle. I think of all of the scenarios that could have happened and I have to stop myself because I get chills and begin to cry. Especially since I recently found out while talking to my kids that they thought that they were going to die and I was there but I have no recollection of it. It breaks my heart, but we were protected. The fact that my neighbor Liza was home to help. She’s always on the go and the bus driver’s wife has epilepsy, so he knew what to do for me while I was seizing.
Even with my diagnosis, I prayed to get through my craniotomy resection just if it was to see and hear my kids one last time. We were all supposed to go to the hospital that afternoon together once they got out of school, but the hospital called us that morning and said they could get me into surgery sooner. I was ready. So, even though I sent them off to school with an “I love you” and a hug, it wasn’t the same.
I awoke from the surgery and there were Noel and the girls. I was so grateful and thought Okay, that’s all I asked for, so if I don’t make it past this, then I’m at peace.
Now, here I am just over seven months since my surgery even with some of the setbacks, every day since the surgery has been a bonus day. Some people don’t even live this long with my diagnosis. I am at a peace with whatever happens because I have to be. I cannot live my life worried and anxious because that’s not living, that’s just being miserable.
I still feel very optimistic and I have an amazing oncologist who is on board with my choices to follow a Western medicine along with holistic approach. As far as doctors goes, that is very rare.
So onward we go with the voice of “re-routing” from the GPS in my head, which actually makes me laugh.