“I have to know, did you marry into that name?” another administrative healthcare person was asking as I handed new patient paperwork.
“Oh, yes we’ve known each other since we were kids.” I replied with a smile.
“Well what are those odds?!” she said.
Odds. Don't get me started on odds. Actually yes, let's talk odds for a second .5% of college players get drafted by a baseball organization. You have a .029% chance to make it to the Major Leagues. I watched that happen from start to finish with my husband's career. After his career-ending injury, we were told that he was at maximum medical improvement. Statistics said once you are past 3 years from the initial incident of the TBI the damage and remaining symptoms are permanent. He went from not being able to read or work, and having migraine headaches 23/30 days a month to now being healthy with none of the previously listed ailments. The odds of me getting Neuroendocrine Cancer were 4 out of 100,000... thats .00004%. What is even more shocking is I know a fellow baseball wife with the same type of Cancer and our husbands were on a team together for one season. Rare seems to be my thing. So what are the odds of having the same first and last name? .069%
“Well if you knew him - well I mean just take a look at him and you would understand why the name thing wasn’t that big of a deal for me.” She looks in the direction of my gaze and then back at me and smiles big. He is too far away to know why we are looking at him and is oblivious sitting there looking all cute.
We had made it safely to Arizona, and Nevin handled the drive with the kids with a helpful but sleepy co-pilot like a champ. I was worried about them mainly due to the bathroom breaks in the middle of the night travel, since I was the one usually driving across the country with the kids in tow for all those years. Through extended family which was another blessing we were able to secure a place to stay over the holidays, from there we would get another place for the remainder of the stay. Romans 8:28 NLT And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them. God is so good.
The first day, Mom and I met the doctor and we were hurrying to the appointment that morning unsure where to go using the GPS, we never turned on the radio in the car. After the appointment, we went to the store to get some things and I retreated to the car to rest. I called my sister to update her, and Mom came back to the car. Before I hung up the phone she asked, “Have you had any signs from Dad?” “Nope.” I replied. After I hung up I told Mom what she had said, and as we were driving back to unload I turned on the radio in the car for the first time and the lyrics to a song played that Dad used to sing a lot. “I am with you, it doesn’t matter where we are…” If you know that song by Chicago the intro is long and it was right as I turned the knob the lyrics started - impeccable timing. Mom and I looked at each other mouths wide open and tears down our cheeks. I grabbed her hand and we listened to the rest of it.
We found a local church, through another friend in the area and it felt good to plug in. Mom and I put up a Christmas tree and had fun bringing a little Christmas cheer to our unexpected spot just in time for the boys to arrive. I was able to start treatments right away, every day.
I walked every day, the fresh air and sun was much needed. Sometimes I would lay in the backyard on the turf, just to feel the sun on my face and stay calm. When I was walking and I found “real” grass I had to touch it which makes me giggle now. I showed up to Arizona an anxious mess, wearing a bracelet 24/7 that I got myself for Christmas and opened up early which naturally calms my nervous system down. (if you are interested in this bracelet, I can email you a referral code to save you $40) I began wearing it less, sleeping, and was back on track to just keep going. Psalms 23:3 NLT He renews my strength. He guides me along right paths, bringing honor to his name.
This new treatment center was integrative, meaning they incorporated conventional medicine with natural. They use methods and treatments that are shown to be effective. Why did I have to go across the country to get the care I needed/wanted? Because each state has different legislation in place for medical care and what they offer. In the state of Arizona, they are legally protected as naturopathic doctors to practice, and mine established a protocol for me of IVs, nutrition, and supplements along with fractionated Chemotherapy. This is considered a whole-body approach. Indiana doesn't have that, the standard care model is what they follow. For some that is fantastic, and successful. In Arizona, they can use off-label, and targeted methods to administer the Chemo. They refer their patients to outside conventional doctors as well, which I love. I think that is the way it should be, a collective approach to what's best for the patient. However, none of it is covered by insurance so they don't have to seek approvals, because once you are in this sort of situation - you find out quickly that insurance dictates what your doctors and team can and cannot do.
I got another CT and we were referred to a radiologist, who then referred me to another one. And then a special PET Scan. If I had these certain receptors in the bad cells then we could inject radiation that would seek and destroy them. I have had all sorts of scans before, but not this type. I reached out back to Indiana to see if they do this sort of injectable radiation and was met with a - no, which was disappointing because insurance would cover me in Indiana. But also this was reassuring me that I was in the right place. I had at one point earlier in this diagnosis about injectable immunotherapy I had read about it when I first was told I was doing immunotherapy and the response was “No, we don't do that.” At the time I didn’t question that, but now I understand it.
I kept reading in my Bible about all things working together for good, healing, and trusting. With the mind, you have to keep pouring in the truth and positive to make it stick. We are scientifically known to hang on to negative words by nature (another reason why our words matter, and comments and anything repeated to ourselves make a worn-out path and we believe it). So while we are easily able to do that with negative things, we can reinforce and correct that with the positive. By repeating it over and over or reading it over and over until it becomes a path and we believe it. There is a fantastic podcast I love that explains it much more eloquently than I can. I never was a person who needed to be told “Good Job” or be encouraged, and throughout this, I have needed that. Proverbs 18 NLT The tongue can bring death or life; those who love to talk will reap consequences. What we say matters both to ourselves and others. I realize now how much better I need to be about this in my own life, when it comes to supporting other people going the extra step is a big deal. Speaking life to and about others can make such a difference.
An amazing friend who I will refer to as Lupe set up a GoFundMe fundraiser for my family, while I know some people have reservations about this sort of thing let me tell you - it helped so much. We had large amounts we needed to pay upfront to get things moving - I was sweating and scrambling and wondering how in the world we were going to do it. GoFundMe does take a small fee out, but we were able to transfer the funds safely to our account and pay each week for my treatments and that was such a blessing. I have mentioned this previously but the people who have shown up for me…prayed for me… and were generous on my behalf brings me to tears. My hope and wish is that I too can be that for them in their times of need.
Make sure that you have people, if you are not sure that you have them then pray that God will bring them into your life. That was me a few years ago, I was praying for quality friendships - I have always had friends but not a ton of really close friends, and the ones I became close to always lived so far away. But not anymore, I made friends over the last few years that have quite honestly blown me away with their ability to make me laugh, and make me walk away feeling good after spending time with them, and I thank God for every single one of them. Sometimes they show up and sit with you before a radiation appointment, unannounced because they knew what time you were there each day and just felt like they should. Or even a simple text that says I love you, a FB message with songs that made them think of me. Even through this storm, He has resurfaced some, created new, and so much more. It is important who you surround yourself with, in Luke 5 for instance the paralyzed man was carried by his friends, and they couldn’t see or reach Jesus because of the crowd so they went onto the roof took off some tiles, and lowered their friend down in front of Jesus. Because of their faith, Jesus healed him.
I have also found wise counsel through being plugged into a Small Group Bible Study. I had looked for a group once we came home from baseball and were more stationary, I wanted strong leadership and knowledge because I just knew that what would help me grow. I found mine a few years ago at CFC Evansville, I attend virtually sometimes in the car while my kids are at practice, with my headphones in on long drives, or just at home, and it's been something I can do from anywhere and I love that. They hold me accountable each week to dig into the word, and they are so knowledgeable. I highly recommend plugging in wherever your church home is, praying out loud with other people for other people has helped me grow to be more confident in my knowledge of the bible and faith.
We often refer to this place as “such a small world” because we wind up being connected in so many amazing ways. I don’t believe in coincidences or luck. Those happenings are blessings from God. The reason I mention this is because through 20-year-old connections I was helped by two different people skilled to be able to help in their own specialties. I believe that was God’s hand in more of the details. They helped me more than they will ever know, and had I not gone to Arizona I'm not sure if that would have happened. One of them found a clinical trial that as an otherwise healthy young person I may be a candidate for. I didn’t like the thought of a trial because what little I knew about them seemed too risky, but I tucked the information in my pocket and kept the door open to it. I had gone from zero options to a few and I thank God for those options.
The results were in - I prayed specifically for clear direction. We had to make a hard decision as to what would happen next and I didn't want to make the wrong one or have any doubts or concerns or what-ifs. And that is what I got. The scan was cold, there were zero receptors for the treatment plan of attack. Worse - there was slight growth from the one week from the CT to the PET. I was told that I needed a “home-run” and that anything we do from here will extend my life but make me feel like crap in the process. Which was the first real thing anyone had ever said to me, in a way that made sense and what I had been saying all along. Keep in mind I was on the side of Camelback Mountain (moderate trail - and I knew when to quit) just a day or two before that. And the day I got the CT results and the new referral I went for a jog in a hoodie while Arizonans were wearing gloves and beanies. I mentioned the trial and a call was placed to another person who confirmed that is what I need.
“You need a home run. And this is your best shot at that.” the doctor’s said. We joked with him he said that on purpose and he really didn’t. I asked for clear direction, and that is what I got. Getting in is usually the hardest part, but I had kept that door open as an option and had my laptop on my lap during infusions sending information and working on everything I could to help speed up that process prior to meeting to get those results. Thank you, God, for my brain and my abilities.
The next few days were rough, we were waiting to see if I was eligible and I went back to my regular infusions. I was upset, and I had my very first anxiety attack. 0/10 do not recommend. This was also the same day back at home when so many people were praying for me. Maybe that was what needed to happen for me to walk away from the comfort of that place into the unknown. It is like my body just knew something wasn’t right. I was overwhelmed. I politely asked my nurse if I could just pop out the door for some fresh air for a minute, while I was attached to my IV pole that you have to wheel around if you go to the bathroom (I am a terrible driver with that by the way). She could see the distress in my swollen eyes and snotty nose and she said sure whatever you need, I promised her I would not go far just outside the doorway where she could still see me. She is a young wonderful nurse, and I was lucky enough to have several really great ones. This was the first time I had the same one almost every day. There was a lot going on in there that day and I was reading important information and I put my headphones in to drown out the noise around me with Firm Foundation by Cody Carnes.
Nurses just don’t get enough credit. They have such stressful, high-adrenaline, demanding, emotionally exhausting jobs. Back, in the beginning, I had a nurse who stopped on her way out the door and turned and said, “ I really have faith that all of this is going to go away for you, I truly believe that.” and then she turned and walked out the door. And I remember I couldn’t speak I just sobbed because she didn't have to say that - and maybe she isn’t even allowed to I am not sure, but it meant so much to me. There was another nurse who made me forget everything for a little bit and I felt like I was just visiting with a friend. We bonded over our KSlade bags and how much we loved them and those handy zipper pockets because she noticed mine, and had to show me hers. Another time I was stopped by a man outside of the building I went to every day and he asked if he could pray with me and my husband, to which we replied absolutely. Now I am not saying I didn't have any negative interactions because I did, but I am choosing to not highlight those here. I don't want to give those any sort of grounds, there is enough of that in the world. This blog is about light.
I was informed that I am eligible for the clinical trial, we made the decision to not continue treatments in AZ since the plan was derailed, and there was still progression, I felt like this was the necessary step. We would have to continue more of the same if I stayed, and the other ideas they had which were second string to the original - if I went through with them could knock me out of eligibility for the trial. I loved the care given at that place, I believe in what they do there, and we were still waiting on a large piece of the puzzle to my targeted treatments and it still had not arrived. Time is of the essence and I need to get going as soon as possible so we notified the trial that I wanted in, made the appointment with them, and then told the place I currently getting treatment that I would not be returning, which was very difficult to do. But I also felt strongly like it was what needed to happen. There are three U.S. phase 2 trial sites: Indiana, Alabama, and New York. Indiana’s is on hold due to restrictions and it is unknown as to when it will open. Alabama is open and I have an appointment for the consult and scans. I have to clear those steps first before I will know for sure what happens next.
We packed up that same day and drove home through the night. Our kids and my mom are literal rock stars. After the initial shock of the news when we came home, we had a group hug and got to work. The next day while driving we stopped for a late lunch and then again to get gas, at Buc-ees. If you haven't stopped at one make sure you do they are huge amazing places and they are filled with great finds, food, and a lot of people. We were somewhere in Missouri, and I had sent the kids out to the truck after a bathroom break. I needed to just walk a little bit, and I was looking for some fruit to snack on. Suddenly I hear - “Ashley?” I was in a hoodie with the hood up, I have no idea how she noticed me or recognized me. I'm sure my face was pure shock and we hugged and cried. This sweet friend I had not seen since G was 1-2 years old and we were with the Indianapolis Indians both of us young moms raising babies in the ballpark and on the road. She was in the Bible Study with me that year as well. And she had been reaching out and checking in on me and praying for me throughout this storm. Her husband was equally excited as he and Nevin had become great friends too so he ran out to the pumps to find him. She shared with me that she had been praying for me every day and she had told her husband I just want to see her, maybe I should go to Arizona and see her. “ Well, here I am!” I said. We caught up and both our then toddlers were taller than us now. God is so good. Our hearts needed that, and the several hugs that came with it. They live about 25-30 minutes from that place and only stopped because of a relative in town, the timing of it all was just incredible. We were somewhere in Missouri and smiling so big.
We are back in Indiana now, for a little rest and reset. There are a lot of unknowns and I am trusting in God. Daniel 3:17 NLT The God whom we serve is able to save us. Deuteronomy 1:30 NLT The Lord your God is going ahead of you. He will fight for you, just as you saw him do in Egypt. When we told the boys my oldest we were going home and then possibly somewhere else he was shaken up and worried, and I told him that I know it's really scary and when things change suddenly it makes us uneasy.
“Who do we believe in?”
“Right, and He can make a way for us when there is no way. But we have to trust Him. And we always stick together as a family. So let's just do this one step at a time because we can do hard things, right?”