“Tremendous shrinkage…I knew it! I told them in the beginning it IS going to work! This will be our miracle drug.” One of my nurses was beaming as he walked me to the infusion room to get my next dose after a three-week break. I smiled as I walked beside him.
My team is invested in me, and I love each of them. We all smile and laugh every time we leave, regardless of the situation. I will continue to travel to get my infusions because the overall experience, people, and care will keep me coming back even if a closer option opens. They have paused the trial because the maximum number has been reached for patients, but there are plans to open more sites due to success. I am so excited for more people to have this option for treatment.
Each month I take a nine-hour drive with the cutest “Uber driver” as he calls himself. That also allows us to have one-on-one conversations about all the things, which is great. We drove through the night, arriving at the imaging center with an hour and a half to spare - so we took a nap in the car. After a day of scans and bloodwork, we retreated to the hotel room slept, and ordered copious amounts of sushi having a picnic at the end of bed. The Lord sent me the most loving, honorable, best friend, and soulmate. I thank Him every day for that. We hold hands and weather the storms, together.
Romans 5:1-5 NLT says “Therefore, since we have been made right in God’s sight by faith we have peace with God because of what Jesus Christ our Lord has done for us. Because of our faith, Christ has brought us into this place of undeserved privilege where we now stand, and we confidently and joyfully look forward to sharing God’s glory. We can rejoice too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us because he has given us the Holy Spirit to fill our hearts with his love.”
To break this down, I credit Tara Leigh Cobble for this interpretation I learned in a podcast. We have peace with God because of what he did for us - not because of anything we have done. We boast in our afflictions (trials and trouble) because we know that it creates endurance and we need that to make it through them. Endurance creates proven character, so God is developing our character. Proven character produces hope, making us hopeful people and that hope will not disappoint us. God's love has been poured out into our hearts through the Holy Spirit whom he has given to us. Faith, Peace, and Hope - through the spirit. His presence in our lives. We are hopeless without Him.
The results were official from the scans that most of the tumors cleared completely, and critical areas shrank significantly. YES!! The good news took time to sink in because it took almost a year to get good news with no “BUT” included. We know that IT IS WORKING. What does this mean? This means I can continue to get the infusions every three weeks, for up to 3 years or until it stops working. So we are preparing for the long haul, and we will do scans in another 6 weeks to monitor the progress.
As it was time for the infusion I walked into a new area they deemed “overflow” for patients. I am always the first to arrive and the last to leave due to the long observation time after I receive the drug. The first roommate fell asleep quickly when she got started with her treatment. The next one who entered was an elderly lady very well-kept - I imagine she was a show stopper in her younger days. She was accompanied by her husband who lovingly assisted her to a chair and put a blanket on her to warm her up. As I sat there excited to receive my medicine, working on my computer she started to cry about getting hers. She said softly to her husband, “I need to gain weight, we keep asking to see the nutritionist but she never comes.” My heart broke for her. Nutrition is such a HUGE part of this in my opinion. And when you are overwhelmed with everything it is so hard to focus or retain what you need to do- it's overwhelming for someone young and able to research and network let alone someone older and already tired. I watched her husband comfort her and tell her not to cry, this is just a bump in the road and we will get the treatment to get you better. I stopped what I was doing, grabbed a piece of paper out of my bag, some sort of flyer with a blank backing was all I could find, and grabbed a pen from the nurse's station. We were the only ones in the room at the time and I was waiting on my cocktail to be brought up so I wasn’t “hooked up” yet. I started jotting down the big important things that I thought may help her or her husband so that she could have some solutions today. Most nutritionists will just say to try to eat healthy fats, or whatever sounds good to you. They ask you a bunch of questions and give you the basic cookie cutter that fits everyone's answer like eating small amounts frequently not just three big meals…etc. - info that you will forget as soon as you walk out the doors. Actual meal/snack ideas need to be tailored to the patient and written down and consulted - not just a quick conversation. Each person has different ailments, due to their treatment and disease. For example in the beginning I was told to eat anything and everything one nurse even said, “Now is not the time to be healthy”. I just sat there crying when she said that, and I didn’t listen to her thank goodness.
My diet changed drastically when I found out I had cancer. I didn’t want to put anything into my body that would “feed” it. It was something I could control, and I think some of it was very effective. But I have learned a lot over this year, and from being with different types of doctors, hospitals, and treatment centers.
I walked over and squatted down next to her chair, and I handed the paper to her husband stating, “ I am NOT a nutritionist, but here is what I have learned so far.” I walked them through the basics like how much protein to aim for, and told them where to find some great drinks giving them examples of what to eat that are delicious but also healthy. I wrote down brand names and showed them pictures of what to look for. I told her that for me a big baked potato with all the toppings was my favorite when I was hungry but didn't know what to eat because I too was trying to gain weight. She smiled and said, “ Oh, I love baked potatoes!”. She thanked me and put her arms out for a hug. I hugged that sweet woman and I could feel her spine. She was so much thinner than me and I barely broke 100 lbs - and I said, “You can do this.”
Each time she started to cry I would speak up across the room and ask them questions to get her mind off of things. She perked up right away telling me all about their life together. He was a musician and played in a band that played in Evansville, IN sometimes at the Casino. She got sent home that day because her counts were too low to receive treatment.
The rest of the day went by quickly because this overflow room was also referred to lovingly by others who had been there longer than me as the “Boom Boom Room”. I wasn’t sure why until I met the other ladies who specifically requested to be put in that room. One even got assigned to the regular room only to get up and sneak down the hall to this one anyway. She was told not to do that again, and she smirked and said oh I will. My husband and I laughed so hard at the women in that room, their stories and conversations were priceless. Movie quotes were flying, and we were so loud. Our nurse had tears running down her face at one point. Nurses were stopping in and sticking their heads in like what’s going on in here you guys are having too much fun I want in! It was so refreshing. I pray for those women. I wondered why it took so long for me to be put into this room like it was a secret VIP access. It was beautiful, those women and one man are full of life - despite the diagnosis choosing joy and spreading it around.
Proverbs 17:22 says, “A cheerful heart is good medicine, but a broken spirit saps a person’s strength.”
Since I have been back at home, organization has been at the top of the list. I have an entire cabinet dedicated to my morning routine and setting up my supplements in a pill organizer for the week so I don't have to think about it I just get it done and this has made taking care of myself while still being Mom, much easier. We are full force back to both kids in travel baseball and we run every night of the week to practices. I created a document that keeps everything organized and up to date when taking all of the supplements, liquids, and powders at the right times each day.
I was recently asked to share my story at a local women's conference Free to Be Confident, and I was surrounded by so many bold believers, and women who with open arms welcomed me. There is a segment where four people speak and tell their stories. I listened to stories of infertility and loss, infidelity, alcoholism, and redemption. I was so calm, I was not nervous at all. I knew that it was something I was supposed to do if that makes sense. Early in my diagnosis while at church I imagined myself telling my survival story on a stage, and then months later while in Arizona a call from a friend told me she envisioned the same for me and that maybe that was my purpose, resulting from all of this. Oddly enough, that's what this conference is all about. Helping women find their passion and their purpose. Goosebumps. Even if I was able to reach one person and bring them one step closer to God, then I think that's worth it. I know there were women in that room who needed to hear my story, some have reached out to me because they too are struggling through a battle of their very own with the same ugly disease just a different type. The ironic thing is, when I got the diagnosis I wanted nothing to do with anything associated with it, I didn't want to be the girl with cancer. I didn't want to tell anyone about it. But now here I am writing, speaking, and sharing my story with the world because it's bigger than just me. People need to know that even in the darkest moments there is hope and that your words and voice matter in other people's lives more than you realize.
Here is a small clip from the conference that someone sent to me who attended. I was so honored to be asked to be a part of it. If you ever get the chance to attend one - you definitely should take the day to pour into yourself. There are so many people with fantastic stories and talents to share that will inspire and fill your cup.
It has officially been a year since this whole thing started. In some ways it feels like the longest year, but in other ways not so much. I still can’t believe that this is my life right now, and I would be lying if I said I didn’t yearn for the “old me” and the days of not even thinking about the C word. But also, I have grown so much in so many ways and for that I am thankful. I have a different outlook on many things now, and a deeper relationship with God. I used to get caught up dwelling on things that didn't matter. I spend my time differently, I don’t waste it. I take time to take care of myself - and by that, I don’t mean going to get my nails done or getting a massage. I take walks, sit outside, and absorb the sounds, sunrises, and sunsets. I start my day with my caffeine-free coffee, with added liquids that kill cancer cells, and spend time in my Bible. I tend to plants and the garden and I leave my phone in the house. I take extra steps to simplify things as much as possible to keep stress and cortisol levels down. I tend to the house, schedule, groceries, and all the things that keep us going each week and weekend for baseball. I watch my kids - their smiles, laughs, and what makes them light up when they talk. What is important to them is important to me, even if it's something that seems silly. I listen even more than before, and I look at women and “beauty” completely differently. Our world is so broken in that regard.
I don't take a single minute for granted. I just want to use the talents that God gave me to help other people and serve my family. I am not "out of the woods" yet but I am en route and so thankful to have surpassed the timeline I was given. I'm still here.
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