Holy smokes, it has been a longgg time since I have written a blog post. People keep asking when I’m going to post another one or why it’s taking me so long to update. For a while, I was blaming my lack of updates on being too busy or just having too much going on. Well… now I’m quarantined in the house and still have not wrote anything. I honestly believe that I want to write, and have thought about posting hundreds of times, so what is holding me back? I have no problem rattling off words in person to fill someone in on Scott’s condition, so why is writing it down so much different? Maybe it’s having to make sense of the scattered thoughts enough to get words down on a page in sensical order. Maybe it’s because having thoughts in writing feels more vulnerable and concrete than just babbling on. Maybe it’s that watching the man I love battle through the cancer journey sucks enough. Writing about it just reopens the wounds that I’ve worked so hard to ignore and patch with duct tape. Whatever it is, I need to not waste this opportunity. Levi Lusko wrote, “Life in real time is messy. The fingerprints of God are often invisible until you look at them in the rear view mirror.” If you have never read his book, Through the Eyes of a Lion: Facing Impossible Pain, Finding Incredible Power, do it. It is an awesome book on handling pain and undesired trials in our lives.
Back in November, I had written in a blog that Scott had to delay his chemo round because his neutrophils were too low. This happened a few more times over the next months, but for the most part, he was able to keep on his chemo schedule pretty well. From November to April, his chemo dose was increased so that was less than awesome but he’s a rock star and battled through.
We took a long weekend getaway with our friends Rob and Rachael to Myrtle Beach. The getaway was exactly what we needed to realign ourselves as a couple and with God before we entered into this next long round of chemo. Our vacation was cut short when we got the news that Scott’s grandmother, Louise, had passed away. We hurried home and by God’s grace, Scott had enough energy to make it to the funeral.
A week later, he was able to go to the U.P. for some male bonding time with his dad, grandpa, and uncles at deer camp. The guys were all so awesome and supportive.
They set up camp, took care of the chores, and set up Scott’s tree stand so he was able to just rest and recover from the chemo round. We are beyond blessed to have such a loving family. We celebrated Scott’s 30th birthday with a low-key dinner at home, and rested.
December rolled around and we were hopeful for a good month to celebrate the holidays with family. We started out strong by being able to meet Vice President Pence. He stopped by the American Legion downtown Grand Rapids unannounced to say thank you and talk to the local veterans. He took time to hear Scott's story and then gave him an awesome challenge coin. If you aren't in the military world, a challenge coin is something that is exchanged between members of the military. Giving someone a challenge coin is a sign of respect and honor. They aren't given easily and the coin must always be earned so this was a really cool moment for Scott.
We kept the good month going by taking a long weekend get away with our friends David and Becca to Florida. Scott felt pretty dang good on the trip, I definitely think the warm weather and humidity helped. We were figuring out how to manage symptoms through timed eating, meds, and lots of naps.
After we got home, Scott’s numbers tanked. When I refer to his “numbers”, it typically means his ANC, WBC, and platelet counts. We tried all the tricks that had worked in the past but nothing seemed to touch his symptoms.
Fever, chills, body aches, nausea, cough, GI issues, sore throat, congestion, he wasn’t doing well and nothing was working. He has struggled with random bloody noses ever since his brain injury in Afghanistan but they still can't figure out where the bleeding comes from. He got a bloody nose which is not out of the ordinary except that it wouldn't stop because his platelets were so low. He started choking and coughing up blood which landed him in the hospital and being diagnosed with Influenza B. For anyone who has had influenza before, you know it’s straight misery. Then to be battling cancer, chemo, radiation, and Influenza at the same time? My heart broke watching his body try so hard to fight this virus but his immune system was just so weak. He was at battle, physically, emotionally, mentally, everything. This was supposed to be a happy month, it was Christmas time. Watching my husband's eyes fill with tears on my birthday because he couldn't make me dinner or go get me a gift was something I will never forget. There is so much pressure in society to get a better job, make more money, get fancier things, reach the next achievement. I wish there was some way for me to express to people that money and things don't matter. So what if you miss a meeting, go to your kids games. Instead of staying late to get a few more things done, leave early and pick up flowers for your wife. Your house is trashed, so what. Go out for a date night. Make memories. Please. Tell your family you love them. Do that thing that will make your spouse smile. Having Scott still sitting next to me on the couch, holding my hand, was the best birthday gift I could have asked for. It's one I honestly didn't know that I would get this year.
Not being able to make it to church throughout this month was really weighing on us. One of our friends, David Bronkema, offered to bring his tablet to church and video conference with Scott so he could watch the church services live. It was so refreshing to feel like we were still a part of the body of Christ on Sunday even when we couldn’t be there in person. We missed our Blythefield Northview family and it was fun to see everyone even through the screen.
The flu stuck around for a few weeks before Scott was able to stay awake for longer periods of time and his numbers began to climb back up. One afternoon, I got a text from Jenna Arcidiacono who is the Chef at the restaurant Amore Trattoria Italiana, one of our favorite places ever. If you haven’t eaten there before, stop planning dinner tonight and go, you won’t regret it! (She has vegan and gluten free stuff too for those of you who need it.)
Anyways, Chef Jenna texted me and said she wanted to stop by to drop off a meal for Scott. When she showed up, I gave her a big hug and then saw an entire news crew behind her. She told me that they were with Fox17 and we had been chosen as a family they were blessing this Christmas. The amount of love and surprises that Jenna and Deanna Falzone gave us was unbelievable. Words still can’t thank you enough for that. The video is posted online if you want to watch it. Click on this link and then scroll to the second picture and the video should start: CLICK HERE FOR LINK.
About a week after the surprise, Scott’s numbers tanked again and he was back to being in isolation. He had to push back starting chemo this month and his new start date was Christmas day. I was honestly pissed about this, because I just wanted him to have the day to enjoy family, laugh, eat food, and celebrate Christ’s birth. Instead, he was so tired, nauseous, starving, and on top of it had to start the next chemo dose.
For those of you who know Scott, he’s a solid mind-over-matter kind of guy. He doesn’t let many things affect him so it shredded me to watch him have to fight so hard mentally and physically to swallow his chemo. If he tried to just take the pills without dominating the mental battle first, his body fought back and the pills would come right back up. It’s as if his body felt the pill heading to his stomach, realized it’s poison, and instantly rejected it. The only way to get a full dose down and keep it down was to do battle mentally and convince his body to accept it. Sometimes he could do this within an hour, but other times it took all day. Christmas day was one that took all day. I felt so helpless watching him go through this, knowing absolutely nothing I had to offer would help, so I just prayed. When we face trials and we're in the thick of it, God wants us to lean in closer to His embrace, not fight to run away. Chemo is no joke. If you know anyone going through it, give them a hug, because they’re rock stars. To celebrate Christmas with family, we did video calls so we could watch the gift exchange, that was a very welcomed distraction.
Shortly after Christmas, Scott’s numbers went back up and so did his energy, praise God. He was determined to make it on the Passion 2020 trip to celebrate New Year’s with our church down in Atlanta. We drove to the event separately so he could have a quiet car ride and sleep as often as needed. He slept during most free time or social time on the trip but was able to make it to a majority of the conference with minimal symptoms, such an answer to prayer.
Most of January was pretty uneventful in regards to crazy symptoms. Things were fairly predictable and we were able to manage the chemo side effects without any major complications. There were two definite highlights of the month, hands down.
First, my aunt Janette texted me one day and said they had extra tickets to go see the play Hamilton and wanted to know if we would be interested in joining. Neither of us had seen this show before and honestly had very little idea what it was about, but we knew its reputation and were so excited to go. They took us to Ruth’s Chris steakhouse for dinner before the show. Holy smokes that place is amazing! I had never eaten there, but let me just tell you, even their side of broccoli is to die for. So delicious. We had incredible seats and the show was on a whole different level. I have seen my fair share of productions, but nothing even came close to this. If you haven’t seen it, you have to. Thank you so much Uncle Ken and Aunt Janette for taking us!
Second highlight was at the end of the month, my parents took our family to Marco Island for vacation. We were so excited until we were told Scott’s next chemo round would fall on the exact 5 days we were going to be down there. Our instant reaction was frustration, stress, annoyance, but we know there’s a reason for everything. So instead of letting stress take over, we pray. See? We're learning. As always, he dominated. He slept anytime he needed to, and joined in activity whenever he was able to. Our family was so awesome and flexible with scheduling and events that it allowed him to join in at any time and eat whenever he was able. This round went way better than the last. I think a combination of the sunshine, humidity, and mass amounts of prayers from loved ones made for an easier round this month. We had a blast being able to play with my nephews and hang out with my siblings and parents. Everyday at the beach, my dad and Lindsay would create some sweet sand sculpture and the rest of us would help the nephews add the details. The alligator was the biggest hit for sure.
While we were waiting at the gate for our flight to go home, we noticed a lady who was obviously shaken up and couldn't stop crying.
Without missing a beat, Scott walked over to the lady and asked if he could pray for her. She burst into tears as she explained that she was in Florida visiting friends but received a phone call late last night that her husband was killed in a car accident. She got the first flight she could back home to Michigan. He sat and prayed with her for awhile and bought her a water. Here was Scott, who had just taken his last dose of chemo, didn't feel well, yet still blessing others. I have so much to learn from him. I hit the jackpot of husbands.
February was jammed packed with appointments. I’m not really sure how that happened but we had numerous appointments every week. He had everything from an MRI and oncology, to gastroenterologist, labs, ENT, QTC, and lots of VA appointments. Super busy month but nothing that was very exciting. This round of chemo was miserable with nausea specifically. He was able to get the meds down, but vomiting started quickly after and was by far the most violent yet. It was every 10-15 minutes for over 4 hours. He wasn’t trying to eat or drink anything, just relax enough to stop, but that wasn’t working. He was still getting sick from his own saliva so he started spitting in a cup to avoid swallowing anything. That eventually started working and he was able to go spans of closer to 30 minutes without getting sick. After a few hours, he was able to eat a cracker and keep it down but no liquids would settle. That was a rough night. Numbers tanked a few days later. It was just a rough round altogether. The next week, I ended up getting sick with a cough, fever, and body aches so we were a lively bunch at our home. I spent what energy I had sanitizing the house and doing laundry in an effort to keep our house a safe space for Scott since his immune system was down so low and we couldn’t afford him to get anything. We kept our distance in the home and by God’s grace he didn’t get sick.
March was very welcomed. New month and spring, bring it on. But then Covid-19 took over. We were supposed to visit my cousins AJ and Abby Mida down in Puerto Rico for a week but the trip got cancelled 5 days before we left because the island went on lock down. We were so so bummed because we were looking forward to a week away to re-coop and just relax for a second, but again, everything happens for a reason, right? Instead of getting upset, we decided to make the most of it and take a virtual vacation that week. We had fruity cocktails, turned up the heat in the house, wore tank tops and shorts, and cropped ourselves into a picture with them at their house. Quarantine makes everyone a little weird, don't judge. We took the whole week and just relaxed at home. It was wonderful.
After that week, we spent quite a bit of time at my parent’s house making masks for friends and family as the virus craze continued. We were able to visit my parents and Scott's mom throughout the quarantine because they were gracious enough to follow our strict isolation rules. It was awesome to have a place Scott could go outside of our own four walls. As the weeks went on, Scott’s numbers weren’t great so we had to be extra careful, but most of society was doing life like we were anyway. The one big scare of the month was when we were told that if there was a surge in Grand Rapids, and space was limited in the hospitals like what was happening in Detroit, that Scott wouldn’t qualify for a vent or treatment because of his diagnosis. Maybe it's just me, but that seemed like complete madness. How could they already determine something like that? It gave me increased urgency to pray for those in other cities who were actually facing that situation. We wrestled a lot that week between panic, trust, frustration, peace, fear, and hope. The whole situation was so unpredictable and unknown. We spent a lot of time in the Word and trying to lean into God's embrace but felt the ever present tension of evil trying to pull us back into panic and anxiety. Just because we know God is good and believe that His plans are perfect, doesn't mean life struggles are easy. We stayed home for the remainder of the month. We used Shipt to deliver our groceries and had them dropped off in the garage. People like my mom, Scott’s mom, and Joan Kuipers were our go-to runners if we needed something from the store right away. Since Scott’s numbers were barely above the baseline, and having everything so unknown with the virus, we chose to skip this round of chemo. He needed all the strength he could get and couldn’t risk his numbers dropping anymore.
April was a unique month for most everyone as the quarantine kept getting stricter and more places were closing down. Having places shut down was actually a total blessing for us. I was able to stay home from work and receive unemployment, and Scott was able to maintain a full paycheck while spending his days at home recovering. I’ve said it before but can’t say it enough, Shoreline Power Services, where Scott works, has been an absolutely incredible support throughout this whole cancer journey. They have not only let Scott keep his job, but have fought for us, gifted us, and supported us. They have constantly adjusted workdays to allow Scott to work as he could tolerate since day one. Having the opportunity to work on random days when he felt well helped boost Scott's energy and motivation so many times. So thank you Mike, from the bottom of our hearts, for never doubting Scott, and for allowing him to thrive.
Scott had an MRI this month. It was different than normal because I wasn't allowed in the hospital with him and we couldn't go upstairs right after to meet with our oncology team which has been the routine in the past. Instead, I waited in the car during the procedure. I was surprised at how difficult this was. What was happening? How was he doing? Since day one, I have been at every appointment, and now I couldn't be. I sat in my car and just watched the world around me. I saw paramedics drive from the ER drop off to the parking spots in front of me. They sanitized every inch of the ambulance before hitting the road again. They looked exhausted. I watched an elderly gentleman struggle to get out of his car while managing his cane and oxygen tank alone. He had to take numerous rest breaks to make the long walk into the hospital. I watched a mom and dad unload their daughter's wheelchair from their van. Machines surrounded the child and were all attached to her wheelchair. The parents worked to cover the mother, the daughter, the wheelchair, and machines in plastic bags barriers before running into Helen Devos Children's hospital. The father sat in the car with his head bowed because only one caregiver was allowed in. My heart ached for these people.
Who was I to feel sad that I couldn't be at Scott's appointment? We are so blessed that Scott was able to walk into his appointment without needing a cane or wheelchair, blessed that he can handle this himself and doesn't require a caregiver to help, blessed that this is just an MRI and not a surgery or emergency. I pulled out my Bible, turned to Psalm 46, and started memorizing. "God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging. There is a river whose streams make glad the city of God, the holy place where the Most High dwells. God is within her, she will not fall; God will help her at break of day. Nations are in uproar, kingdoms fall; He lifts His voice, the earth melts. The Lord Almighty is with us... He says, “Be still, and know that I am God." Amen.
After his MRI was finished, we had a virtual appointment with our oncologist and she said everything looked great, thank you Lord. This picture is a comparison of his last image with the current one. They said his scar tissue has reduced and there is less pressure on the brain. This is basically an ideal image and what they were hoping for his MRI's to start looking like. The goal from here on is to have no changes. We want it to look like this on every scan going forward. The tumor is gone from surgery and radiation, and the chemo attacked the cancer at the cellular level. Because his cancer was reproducing, there is always the chance that it returns. If there was a single cell left that chemo didn't get, it will return, we just don't know how soon. They have told us it could return between 6 months and 30 years, so now we just wait. We have made it to the 6 month mark and he's going strong. We know God's plan is perfect, we've trained for this. We have our prayer warriors surrounding us doing battle everyday. Words will never suffice to express our gratitude for each and every one of you.
Scott had his last round of chemo this month!! Thank you Lord! It was a long road, but he made it. We can’t wait to have some sort of celebration once all of this quarantine stuff is over. Chemo didn’t present with any extreme symptoms this time like some other months, but he had consistent symptoms that seemed to just linger forever. He would be rough for a few days, good for a few days, then the symptoms would return and he was down again. He is still currently battling symptoms but I would like to think it’s slowly getting better by the day. A big blessing this month was a 3 day stretch where he didn't just feel good, he felt really good. He told me one evening after doing yard work, he hasn’t had that much strength or energy in the last 2 years. He felt the way he used to feel before his headaches ever started or discovering his tumor. His decreased energy, decreased endurance, and slower processing had been obvious throughout this process, so seeing him like this was amazing... just so encouraging and refreshing.
If you ask Scott how he's doing, he will respond that spiritually, he has never been better. Physical wellness varies and emotional stability is a constant battle, but he has wrestled in his faith more in the last year than ever before. The constant support and encouragement from all of you has been pivotal in running this race. There were so many days when Scott was struggling, and would received a random card in the mail from someone sending words of encouragement. Every card and note has been hung on our mantle and he re-reads them often. Nearly every time someone sent us a photo of them wearing their warrior shirt, our eyes filled with tears because it's physical proof that we are being prayed for and supported.
We still have some shirts left if anyone is interested. Just text me or email nofast104@gmail.com. Some of you have asked what the email of “nofast104” means and I guess I never really explained that. It's simple. No One Fights Alone Scott’s Team. N.O.F.A.S.T. The 104 comes is the numbers of the verse we have chosen for the back of the shirt, 2 Corinthians 10:4.
We know that he’s not out of the woods yet, but having radiation done, chemo done, and a solid looking MRI is a blessing that we didn’t know if we would ever have or not. The statement I quoted at the beginning of this post by Levi Lusko has been so true for us. Life in real time is messy and confusing, but when you are on the other side of a trial, it is so much easier to look back and see how God’s hands were at work. Throughout this battle, we have learned a lot about our own hearts. We long to have our very first knee-jerk reaction when faced with confusion and pain, be to trust and have faith in God’s goodness and His promises. We don’t want to scramble trying to fix an undesired situation so that it fits a mold we deem acceptable for this life. We serve a big God, why would we ever try to limit His plans to our thoughts and plans that we think are rational. For some reason, God has allowed our household to battle infertility and cancer. While these may not seem like glorious opportunities, they are just that, opportunities. We don’t want to miss an opportunity because we are too busy complaining or trying to change it. C.S. Lewis once said, “For you will certainly carry out God’s purpose, however you act, but it makes a difference to you whether you serve like Judas or like John.” I love this. Even though God knows how I will respond in obedience during a given trial, I must still endure the trial for my own sake so I can continue to learn more about myself. The most wonderful part about knowing God, is that you can stop staring at your feet while you walk through life and finally look up. You can see life for the long term. When you shift your gaze forward towards heaven, it eases the pain of the current undesired changes in life. We have been blessed with these trials for a reason and we aren’t about to wish it away.
Anchored in Christ,
- Scott & Tina