“I love you!” I would say every night after a tuck-in and prayers.
“Love YOU”
“Love you MORE” and then it would be who could have the best answer to that as I would quickly sneak to the door and try to get the last word. Sometimes it was love you infinity, love you more more more,...you get the idea. Which always left us both smiling as I would leave their bedrooms starting when they were just learning to talk and every night since.
I think about how much I love my kids, how I would do anything to keep them safe, happy, and healthy - and then I think about what God did with his only son for us. And it wrecks me. John 3:16 NIV For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. The fact that we can never fully grasp how much He loves us. Wow. Romans 8:32 NIV He who did not spare his own Son, but gave him up for us all - how will he not also, along with him, graciously give us all things? There are no prayers that are too small or insignificant. I used to think that only big important things are worthy of asking for in prayer. That simply is not true. He wants to be your bestie. He wants to know all the things, so being honest about your frustrations and your feelings and asking for His help, when you do that - you grow.
Nevin and I drove to Alabama for the consultation and evaluation trusting in God as he leads every step. These tests/scans I could not study for, but I continued to take care of my body to the best of my ability. Nutrition, physical movement, mental stability, in all the things I keep asking for His guidance and protection. 1 Corinthians 6:19-20 NLT Don’t you realize your body is a temple of the Holy Spirit, who lives in you and was given to you by God? You do not belong to yourself, for God bought you at a high price. So you must honor God with your body. My thinking has always been that if I am disciplined and intentional on my end, I am giving God something to work with - I am doing my part. When we arrived we met with the doctor and the ladies who I had spoken with a few times over the phone. They ran some tests and reviewed the paperwork with me. The last step was a clear brain MRI, but that was the next day.
A lot of people ask how are you feeling? Does it hurt, or are you in pain? The answer is I feel good. I think the support I have given my body has helped in that aspect. As a pretty active person, I decided early on to keep it that way. I get small blips of uncomfortable feelings in random areas, but they come and go away. Sometimes it feels like your pants are just hitting the wrong spot and you readjust. Sometimes my back gets sore and I realize I'm slouching and I sit up straighter or stop leaning and it helps. I have noticed that since I have been home I have been more tired. Throughout my other treatments, I needed naps sometimes. But if I pushed through I didn't need them and slept better at night so I didn't take them. Other than that, every day I get up take my supplements, focus on eating healthy and as often as possible, and move my body.
The next day, we went for the scans they had scheduled three in a row. When they had me prepare and take blood again, they pulled out the drink for the CTs which would be first. I remembered asking a previous tech if they could see the brain on other scans and they told me no they do jawline down because the contrast can mess with the imaging and the brain would light up not giving a clear read. So that's why the brain is done separately. So I questioned the order and explained my thoughts. They were happy I asked and confirmed with a Radiologist. I explained the CTs would show things that we knew already, but the MRI of the brain was most important and we need a good clear read. So she agreed it should be first and they switched the order. Thank goodness I asked. When I went back for the brain scan, they put in ear plugs and foam and this thing over my head that I could see out of and then you go in the machine. This type is loud and there were no headphones this time with music. So I decided to sing Firm Foundation, over and over in my head. The scan lasts 20 minutes, and you cannot move. My eyes were shut the entire time. I remember feeling very peaceful and content and I must have been pretty relaxed or something because everything quieted and I saw my Dad's face. He started to say something and then a nurse touched my arm (the rest of me was still in the machine). This sort of thing has never happened before.
“Okay Ashley, I am starting the contrast you will feel a cool sensation in your arm, you have 4 minutes left. Are you doing okay?”
“Uh - Huh” is all I could get out. I opened my eyes and I was so confused how had it been 16 minutes already and had I fallen asleep? What just happened? Don’t move! Then it was done and I went back to the waiting area to drink the nasty drinks for the CTs.
We stopped to eat, I had to fast for those scans so I was excited for food, and then we hit the road to go back home. On the way home my doctor called - I got my first batch of good news! I was approved to be in the trial, and my brain scan was clear. The CTs were as expected with slight growth in the liver. After seeking approval, since my chemo was fractionated the half-life is low so you can start earlier than anticipated - next week. Who would have thought getting into a clinical trial would be the good news, right? Not me! But here we are.
This trial is unlike what most think of, there is no placebo. Both groups get the drug and it is in Phase 2 already which means they are trying to establish the highest dose with the least amount of side effects. To be able to start there is a “dry out period” from all anticancerous treatments. With how fast mine spreads that was and is a huge risk for me, but one I was willing to take at this point. If I had done what the doctor told me in Indiana I would have never known about this trial. And if I had stuck with conventional chemo I would not have been healthy enough to get into this trial. I'm just so thankful. I think every step of this was leading me to the next, and maybe I had to go through that because this wasn’t ready. 1 John 4:16 NLT We know how much God loves us, and we have put our trust in his love. God is love, and all who live in love live in God, and God lives in them.
Data shows this immunotherapy t-cell type is effective against my cancer, higher than any other treatment option out there. But of course, we don't know how my body will react to it and there are side effects of all variations. But honestly, everyone reacts differently to the other treatments I have already tried too. God didn’t carry me this far to fail me now, he has a plan and purpose for me. I am now sitting in Alabama with the sunshine on my skin as I type this. I have an outpatient procedure tomorrow, and I start the trial on Wednesday. The Bible says in James 1:2-4 NIV Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. A trial can be referred to as trouble - which brings opportunity for great joy. I find it interesting that my journey has led me to an actual “trial” for a type of medicine that to get it I have to trust and offer myself into a lot of unknowns - so that my body may be able to fight off this disease. And in doing so it may give me more time with those I love so very much - while also helping the next person who is affected by this neuroendocrine cancer.
Our Love Story
Nevin and I met in the third grade, we rode the same school bus every day and we had the same teacher that year. I remember his chubby cheeks and large chicklet front teeth with the racing stripes etched in the sides of his dark hair just above his ears. It wasn’t until the next year that we started to seek out each other during reading time. We were in opposite classrooms and he would sit in the window on his side and I would on my side (where the rooms connected and there was a walkthrough) reading our books. I still have a piece of Lisa Frank Stationary that he signed his name on and said, “Hang on to this, it is going to be worth something someday.” That paper lived on my corkboard in my room until well after we left and went our separate ways for college. Our 4th-grade relationship didn’t last after a hilarious exchange of breaking up and asking for things back - and me asking a mutual friend of ours to be my boyfriend and when he said yes I said “Just kidding- just wanted to see what you would say” and then Nevin sending that same friend to ask me if I wanted to be Nevins girlfriend again and when I said yes he gave me a dose of my own medicine - “Just kidding, I just wanted to see what you would say”. After 5th grade, I switched schools, but I remained friends with my original schoolmates, all the way through high school. We never dated back then, we were just great friends. There was this time in middle school when he would flirt with me on ICQ and I called him out because I knew he was doing that with three other girls. Ha, sorry pal! We laugh about how glad we are that we didn’t ever date when we were younger because one of us would have screwed it up. The cool part is he is in almost all of my memories growing up, and it's sweet because we watched each other date other people, make mistakes, and do a lot of growing up. We know everything about each other, even the parts we wish we didn't. After I got my tattoo at eighteen with friends, I went over to his house and threw my foot in his dad's lap to show it off. His dad despises tattoos - but they were like an extra set of parents to me even back then. Years later my dad knew that Nevin had a tattoo before his dad did, and was giving him a hard time about not taking his shirt off at the beach. So when he did, he made me stand in front of him while he told his father that he had a tattoo, as a grown and engaged man. I just stood there as a small shield smiling. Nevin had also put a wallet-size photo of one of his senior pictures and tucked it into a frame of our family at my house, and he told my mom it was because he was going to be in the family someday. I would roll my eyes, and that picture stayed tucked into the corner of that frame for years. My parents let me have a place where my friends all felt welcome, any time - all the time and I am so grateful for that.
After high school, he went an hour north of our hometown and I went an hour south. We kept in touch, and then he got drafted for baseball as a junior. I called and left him a message congratulating him thinking - well I will never see him again. We talked here and there during his first season in pro ball, and when he came home he was flying into my college town. I had an event to go to, but I decided to swing in and welcome him home first. I was waiting for his plane to land and I got nervous. I called another friend and I was like I have known him my whole life why in the world am I nervous about this, and they said - it's because you like him, Ash. I think I told them to shut up and hung up the phone. We had never talked about anything like that, we were just friends. But he got off the plane walked up to me and kissed me. Then he said can I take you on a date tomorrow night? And I said yes. Then we walked to the baggage claim and as we turned the corner his parents were there, and his dad said, “ Well, what are you doing here?” and gave me a big hug. I said, “I’m here for the same reason you are.”
And the rest is history.
Ways to Love Someone with a Cancer Diagnosis
As a completely healthy 38-year-old with no previous health problems and no primary care practitioner - I was completely side-swiped. My advice here would be just love them in the best way you know how, if they are not responding don't take it personally - they're processing a lot and they may be trying to protect themselves or you. Pray for them, please please pray for them. If they want to talk about it they will, and sometimes hearing about someone else's life and happenings is just what they need to stop living the same nightmare that is Cancer over and over every day. If you called to tell them about something silly that happened to you that day, still do that. They want to feel normal because their whole world has been flipped upside down and run over three times.
I have created a list of my favorite things I found to be extremely helpful and valuable during my journey with Cancer. Some of the products listed I found and continue to purchase, others were gifted to me and I now use them daily. A wonderful way to show your love and support to someone in this type of situation is to send something from Amazon with a note of encouragement. As an Amazon Associate, I earn from qualifying purchases when you use my links below. All of the proceeds are used to support my health journey.
Ashley’s Favorite Things
Spiritual Encouragement
365 Days of Healing Devotional - This was sent to me by someone I have never met in person and I use it every single day to remind myself and spend time focusing on God’s truth that he wants us to be healed. This is great for someone who is in this type of season - a very trying season where they need to heal physically, or spiritually with direct reference to truth from the bible but put in a way that is relatable and real.
Pocket Bible Devotional for Women - This is an NIV version of the Bible with daily verses and a reflection for the day. It is easy to take a long to keep in a purse or car and read it when you have a few minutes in between appointments or if you are waiting on kids to pick them up from school or practice.
Confidence
Clean Makeup Foundation - Clean products are a great idea for overall health, especially when your body is fighting and being put through so much. It is legit, I have tried several kinds and it's just as good as the stuff full of chemicals but so much healthier.
Tinted Moisturizer - another clean product that I have used for years, and it comes in handy when you just want to grab and go with some mascara and chapstick.
Castor Oil (Face & Lashes) - I was not super consistent with face use but I was with the eyelashes after mine all fell out I was consistent with the wand and using it and mine came back thick and long very quickly!
Lash Primer & Mascara - I am super picky about mascaras so going clean here has not happened yet because I always go back to this one. It's tried and true and don't get waterproof if you're growing back new lashes treat those puppies with care!
Treatment Take-Along Items
Bogg Bag - Having a bag that holds shape on the floor next to you so you can easily access things, that you can wipe down and clean out after each time is key. The larger size is needed, you will bring more things than you think and your blanket can roll up nicely and tuck inside. You can even have fun and personalize it if you want and then use it for the beach or the ballpark too.
Soft Blanket - this is needed for treatments, the rooms and areas are cold and you need to stay warm to get the meds where they need to go, it helps your veins too if your arms get cold like mine did.
Zip up Hoodie - comfy clothes, and depending on if you have a port or not this is good either way. You can slip one arm out to be used as needed or have easy access to a port.
Healthy snacks are key, there will be candy and other things offered in conventional treatment centers. Make your choices wisely, or just bring your own. Nuts, fruits, whole foods… it's worth it.
Charging Bank - you may not always be near a plug-in, and you want to be able to put Wired Apple Headphones in to listen to an audiobook, or music playlist, or just to take a call from a friend.
Travel Kleenex just put them in the car and replenish as needed, Travel wet wipes, and a Travel pill organizer.
Supplements
Mary Ruth's Multivitamin - My hair health and nails are probably the best they have ever been. I have to trim my nails weekly and they were very thin and papery before.
Mary Ruth's Dose Vitamin C - This is helpful for your immune system, liposomal is better than all other forms of it. Make sure that it doesn't interact with your treatments, consult with your doctor.
Orgain SuperFoods Probiotics - This is added to my protein shakes or smoothies. Created by a Cancer survivor and packed with all the good stuff.
Orgain Protein Powder - I use this every day in shakes or a smoothie.
Almond Milk (6 pack of cartons) - I use this for shakes and smoothies instead of milk.
Hydrogen Water Bottle - I have a lot of water bottles and this one I love, there is a lot of science behind it. It lights up when you run it making it easier to see at night and is a big conversation piece in the treatment centers when people see you with it. I get asked about it a lot. Make sure you have a water bottle in your take-along bag for treatments as well.
Exercise & Wellness
Cold Gel Eye Mask - A great gift, it is my go-to for headaches.
Mini Trampoline - A lot of cancer centers have these. 10 minutes of jumping is equivalent to 40 minutes of cardio. It's easier on the joints and helps with bone health and oxygenating the blood. When you have been radiated and chemoed this is a great low-impact way to keep lymphatic flow without overdoing it, and it is fun.
Castor Oil Pack (Liver) - This tool has been a regularly used item, research the benefits of Castor Oil and you will be amazed. Make sure you read the instructions, I did it backward for weeks!
Red Light Therapy - While stretching after radiation or on dreary days I would put this near me while I did my workout.
Personal Sauna - This was my daily routine before my treatments ever started, I hit it hard with nutrition and 15 minutes every night while I waited for my official diagnosis and until I started my first treatments. After that consult with your doctor.
Grounding Mat - I use this while I am at my computer or sitting and watching TV I make sure I'm barefoot with my feet on it. It calms inflammation in the body, you can look up more information on the benefits of grounding.
Alpha Lapoic Acid - I started taking this when I had neuropathy in my feet after chemo/immuno it started in my toes and would come and go. I started taking this supplement and it improved. When I went to AZ I was on an IV version of it so I stopped taking the supplement. Now that I am back home I take the supplemental version again, I can tell you that it is gone completely. Most days I was wearing Compression Socks which are a game changer. I have now gone a week without wearing compression socks and I am having none of those sensations.
For the Person with the Diagnosis
Each person will handle this situation differently like all life-changing events. For me, I asked my close family and friends not to treat me any differently. I didn’t want to be viewed as sick or weak, I even gave strict orders that there would be no crying, especially in front of my kids. My husband and I went into a heightened protective mode for them. They need to be carefree kids, and they don't need to carry the weight of any of this. We told them what little they needed to know and approached that delicately one step at a time. But if you don't tell them anything, as kids - they imagine the worst. So honesty is important but each family has to decide what is enough and what isn't - because truly only the parents know their kids best.
Once I stopped being stubborn and plugged into groups of other people with the same type as me and other cancers, they too had felt this way. For those groups you find for the support online - be mindful of what you are getting into. While they can be amazing tools to learn from others who have already “been there” they can help give you information on what else you can do or doctors who specialize. Stories of success and complete recovery happen, but there is also horrible loss and they come for support for that too. I have mentioned it before - but your story is not their story. So when you get smacked in the face with a post of a person younger than you, diagnosed with the same type as you, who got diagnosed the same month that you did, and they pass - you shut the device down and take a walk or a run and remind yourself that you're still here and that's not your story and you pray for that family. Always remember too that we don't know the hearts of other people, only God does. Do not compare your journey to anyone else, and be happy for those who have had success. This sort of thing can make you look around and envy people who take their health for granted if you are not careful. Don't let that happen. I have also had people reach out to me with other types of cancers, and they don't publicly share that they have been diagnosed for a lot of reasons. I too found it easier to talk about the situation with people I was not super close with - because you don't have to watch their hearts break. It's hard to explain but it was easier to talk to someone who wouldn't fall apart with me. It is awkward for everyone, people want to acknowledge that you are going through something and show that they care because if they don’t say anything that feels wrong and weird. And sometimes people say really weird things, but they mean well.
Keep your head up, you CAN do this. Take one day at a time, and just keep going. Don't you dare quit! Find your people the ones who will encourage you, you don’t have to answer every message or text, you can feel how you want to feel, let people help you, cling to your faith pray for protection and healing - rebuking the negative in all aspects of your life - ask God to remove it. When the tears come, let them out - tears are like toxins just feel it (if you push it down you will eventually explode unexpectedly), get them out, and then you will feel better. Look for the light and beauty in the every day, and just know you always have me in your corner cheering you on.