Hope | Ambient Light in a Cancer Journey

“What’s your name?” she asked.

“Ashley…” I replied.

“Last name?” 

“Also Ashley, the same name twice” I replied, trying not to anticipate the next question which has been just the same conversation on repeat for over 15 years now. 

I was running close to the time of my appointment. I showed up at the Hospital in the usual place, we hurried in and realized this PET Scan was in a completely different area of the campus unlike the last one. So we got back in the car and raced a few miles to the other building that we had never been to before. My husband dropped me at the door and I told him I would text when I figured out where to go, I can’t be late and miss this appointment. After a quick exchange with a new person at the front desk who wasn’t entirely sure where to send me someone else stepped up and pointed me in the right direction. I was anxious and worried so I jogged down the hall where she told me. After scanning the QR code to check in, I still waited in line I wanted to make sure I was officially checked in. 

“Wait, your name is really Ashley Ashley? I thought for sure that was a typo.” she said with a smile.

I wasn’t in the mood today, I was nervous about the scan and cutting it close to the appointment time and I knew they needed to get my IV going with the radioactive dye so that this show could get on the road. I tried to not show annoyance as I thought to myself, no matter what I want to be kind to these people they are dealing with people who are at their worst most days. I decided early on in this diagnosis that it’s not their fault, those are your feelings they are helpers. Be the girl they are not dreading to come in, spread some kindness. 1 Thessalonians 4:1NLT Always be joyful. (Paul gives some amazing advice in that Chapter)

“Yes, it is....I know..” I smiled back.

A guy sitting nearby who was listening chimes in - “ What? So did your parents name you that?” he smiled. He was older and sitting alone. 

“Nope, even worse I did it to myself!” I smirked back. 

He had the biggest smile and laughed loudly.

I went on to take a seat and shortly after my husband Nevin walked in, they called me back. You have to go back to these alone. I sat in that room went through the paperwork with the nurse like we do each time and got the IV inserted. I was never bothered by needles before. But by this time I had had 4 3day cycles of chemo (every 3 weeks), 38 rounds of radiation (everyday), countless blood draws in between all of those, and then 3 rounds of immunotherapy (every 3 weeks). I did it all without a port, which everyone in healthcare seemed so surprised by. I had gotten to the point where I could not look while they did it, and I would pull my hoodie over my face like a child and say - just tell me when you are done I don’t need a countdown. I had read about the trauma associated with Cancer patients and honestly I thought PTSD from that sounds a little dramatic. And I feel embarassed and terrible for thinking that, because it is a real thing the daily grind mentally and the "scanxiety" associated with re-entering and these spaces and smells and environments - are REAL. For this type of scan, you have to sit in a room alone for sixty minutes while the radioactive tracer circulates throughout your body. It helps the machine locate all the bad stuff. So you have some time on your hands, and your stuck with your thoughts. your thoughts are SO important but thats for another blog post. During the first one I ever got I closed my eyes laid back in an uncomfortable chair and sang worship songs in my head for the whole hour. The same one kept coming up over and over - it was Holy Forever by Chris Tomlin. I love the chorus, it just hits differently. I love music - but that is a whole other blog for this story as well. And a really cool one I might add. But this time, while waiting I wanted to just read the Bible so I did. I used the Bible App on my phone and I came across a verse that just fit what I was feeling. I wanted to be able to read it over and over while my heart raced and I was stuck with no other distractions. You have to lay still for the machine and it’s just you and your thoughts. And I wanted to memorize this one, and so I did what I used to do in school years ago when I wanted to remember something. I wrote it on my hand with my pen. 

Psalm 39:7

While Nevin was in the waiting room, he overheard a guy sitting with a group of people telling this story about a girl with the same name twice and how she said, “She did it to herself! That made my day!” and they were all smiling and laughing. He never told them he was married to that girl he just smiled and listened.

Well, at least I made some people laugh and smile who were sitting in that waiting room probably nervous about some findings for a health issue.

Afterwards, you can try to read the faces of those techs but they are great at giving you nothing. I bet they are excellent at poker, is what I told Nevin on the way out. I could never do that job. Remember the issue with my thoughts appearing on my face? The results would not be given to us until the next day when we met with the Doctor to approve the last round of the two immunotherapy drugs I was receiving. We had reached the point in my diagnosis that my doctor referred to this type of treatment as my hail mary. We weren’t sure if it would work, not enough data on my type. 

When I had gotten the last round of bad news and found out I was to do the immunotherapy a sweet friend had found an article and sent it to me, it sat on my phone for over twenty-four hours. I had been told since the chemo+radiation was a medical fail (spoiler - to me it wasn’t and I will detail that later as well) that if we did nothing I had 6 months. I was not in a good space mentally or emotionally. I couldn't bring myself to read anything about Cancer or research and I was scared to open it. I had told my husband, “I just need to find someone who has done this before and I will feel better”. Because my Cancer is so rare, the chances of that are probably slim to none, and if I do the type that I have is so aggressive they’re probably not alive. That very same day I got that text message - It was an article about a man in a later stage than me, with the same rare type of cancer, and I had it saved to my phone screen so I could read it over and over. He had been given 6 months - just like me. It was in his liver - just like me. He received the two immuno drugs I was going to get. And he was 4 years out with no evidence of disease. That article about one person had given me so much hope - SO much hope in the middle of my storm. He helped me and he never even knew it. I wanted to know what he did, what he ate…what workouts. I tried to connect but the friend requests were never accepted, until after I was off that path. I had found someone like me who had done this before and had a positive result. The article was just enough to keep me positive and focused on moving forward. We can each be a light for Jesus, and sometimes we don’t even realize we are doing it. Every single interaction we have no matter how big or small - has the potential to help someone. 

Which brings me to why I am writing this, I want to be able to help the next person. Whether it is someone diagnosed with the exact same type of Cancer as me, or not. Not so they can think well if it didn't work for her it won't work for me - no no my story is not your story! But maybe it can help in some way, maybe it can give you ways to cope, pray, live, and not feel like a zebra in a herd of horses. If I had not leaned in and repeatedly asked God and put my life in his hands, I could have never navigated this on my own. Never. He gave me the strength - He kept the tears at bay while I interacted with my kids and was dancing with them in the kitchen pushing out the negative thoughts. He protected my mind after I prayed for the helmet of salvation and joy despite the circumstances. Ephesians 6:17 NLT Put on salvation as your helmet, and take the sword of the Spirit, which is the word of God. He gave me that strength that everyone asks about, He keeps me in the fight.

Neuroendocrine Carcinoid is a nasty type, it’s extremely rare and sneaky. There are two types: slow grade and high grade. Mine is the High Grade - that means it divides and multiples very quickly. I didn’t even know my ki67% until the end of my first go around with conventional chemo - and that was probably for the better because mine is 90%. 

Thats bad. My case is additionally rare in the sense that it presented backward, it usually is not symptomatic until it’s everywhere and by then it is too late. 

I am in a very critical part of my journey, and part of me wanted to wait it out and see what happens and then tell the world about what Jesus did for me. But here’s the thing - he has already done some amazing things for me and my family. Truly amazing things, that only He could do. There are miracles in my story already, and with that I have a responsibility to share that with whoever is willing to listen. I will get into the details as we go - I want to make sure that I remember them and that my kids can come here and read this and know about them too someday, because they are young and they don't know all the specifics. 

That next day we went back for my appointment with the Doctor, they drew blood again and I went to the waiting room. He walked in and immediately said, “I don't have good news for you.” The rest is a blur…my heart beats fast just thinking about it. Somewhere in there, I blurted out “Are you a believer?” He replied, “No, I would describe myself as an Athiest.” I’m not good at hiding what I am thinking on my face so who knows what that looked like but he then said, “..is that important to you?” My husband replied quickly, “Yes!” And I said, “Yes, in the sense that I am a believer, but I don’t think you are not a good Doctor or a bad person because of that.” He said, “Well thank you.” He then proceeded to share that four patients had left him because of it, and two tried to convert him. I said, “You have the hardest job - and I just think that it takes more faith to not believe in God than it does to believe in Him.” Then I apologized for being intrusive, he said “No if I was uncomfortable I would have told you that.” Then I asked if he had ever seen a case of Spontaneous Remission (that’s what a miracle is termed in the medical world) and he said once but it was in Cancer of the kidneys and so yes but not with this type. At this point in my story, I was told that I had a to go back to Chemotherapy to buy time. That the end was written, he has seen what this does from here and I needed to slow it down with Chemotherapy immediately and I needed to get on the schedule for the following week. That I had a few months. I asked if I should try to get into another place or go to Texas or another country and I was told, “You don’t have time for that, I know you want to be with your kids and your family.” That last part he was right about.

This news was given to me just before Christmas. How do you fill your house with joy at Christmas with this on your heart, I just kept asking God how am I supposed to do this. We drove home, and I was waiting for a call to be put on the schedule for more Chemotherapy, it was the weekend so I knew I wouldn’t hear anything right away. I was crying a lot off and on, not sleeping, and I was in a ball on the floor begging God for help. The next day, I told my husband I just wanted someone to tell me what to do. I have run out of mental space and energy to hunt for the next steps. If you know me at all I am a researcher, problem solver, and a planner. I don't give up easily on anything or anyone. But I had hit a point mentally where I was just so heartbroken for my kids, and my husband. I was not mad at all I was just so sad. I had made a post relaying that we had not gotten good news because there are so many people who are praying intentionally for me and my family. The fact that bold Christians were fervently praying to God on my behalf not just looking at a post and saying they would, but doing it each day and following through with it is just…..I am in awe. To see people show up, and pray like that - I don't wish that anyone has to ever be at a point where they need this type of prayer. I am blessed to be here to witness it, all of that love and all the little connections you have made throughout your life that meant something to someone besides you. I can't explain that feeling. James 5:16 NLT Confess your sins to each other and pray for each other so that you may be healed. The earnest prayer of a righteous person has great power and produces wonderful results.

My phone dinged with a message from another sweet friend many states away, she had entered my life through our husbands playing baseball together and I got to know her through a Bible Study in Montgomery, Alabama during a summer after my father passed away. We are sisters in Christ. She sent me links to a treatment center along with an encouraging message that was something like, don’t you dare give up hope - please contact this place. And then more links to articles about success that they had with cases like mine specifically the same type. She found out about it from a friend of a friend who had placed her testimony in a post online. (Are you seeing a pattern here? - and the perfect timing) Someone I didn’t know at all, told her story and impacted mine positively. We are friends who text regularly now, and I love her heart for Jesus. It is like we skipped all the get-to-know-you parts and jumped right in, our hearts are just the same. He did that too.

That night, we researched ourselves and decided to call first thing in the morning to see how it all worked and if I could get in. Not knowing how long it may take or if it was even the right place to go we prayed together that night and I pleaded to God, please make a way and help us find it. 

The next day, I was on the phone early before they opened and doing things around the house. They called back and walked us through the process and what they needed before we could get an answer or timeline. At the absolute quickest they mentioned they could get me on the schedule in a week and a half away from that day - we were okay with that. What usually takes days - with quick thinking and (thank goodness for the digital age and knowing how to use it) that process was completed that day. I shut the laptop put my wig on and quickly changed. It was time to go to the boys' Christmas concert and put a smile on my face and not think about the fact that it could be the last one I see. The next day midday we got the call, and my case was accepted. They understood the urgency they get a lot of cases in the late stages, and more paperwork needed to be filled out which I immediately sent back. The woman on the phone said your consultation is on next Thursday and said the date. I politely asked if she meant this Thursday because today was two days before the date she mentioned. “Oh hold on a second let me look, I am so sorry……..I did mean this Thursday but that’s really short notice would you be able to?” “Yes! I'll take it.” This close to Christmas and New Year's being out of offices - the next opening they had wasn’t until after both. Songs pop into my head and what comes to mind here is “Never early, never late, He gon’ stand by what He claimed lived enough to say…help is on the way” TobyMac. This is what I needed, at just the right time. I had twenty-four hours to pack for our family to move twenty-four hours away from our home in Indiana to Arizona. And I was immediately filled with amplified hope.