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Tag: chemotherapy

  • Butler’s Brain Cancer Story – Part 5

    Butler was able to come home about a week before Thanksgiving – his favorite holiday! The day he came home from the hospital was an exciting, yet scary day. I have taken care of my mother in the past after 2 broken hips, and I was more afraid of Butler falling and hitting his head than I was of my mom falling. Everything seemed so fragile and heavy at the same time. He was a fall risk the entire time he was in the hospital, so wasn’t he a fall risk at home? Butler was never a breakfast person, but he worked up quite the appetite in the hospital, and became used to eating breakfast. The first morning he was home, he woke up, and asked me for pancakes, hash browns, eggs, and bacon!! I was amazed, excited (I always told him he needed to eat breakfast), and overwhelmed! Could I make a breakfast that size, every day? What I didn’t know at the time, was he was still in a period of deep healing, which required lots of nutrients, and rest. I was happy to do everything I could to help the healing process along, no matter how overwhelming. We made it through that period just fine.

    I was never prepared for the amount of sleep he would be sleeping. He slept all the time, which considering everything he had gone through, made sense. Almost immediately, we had occupational therapy, physical therapy, speech therapy, and a home nurse set up and coming to our home fairly often. There was so much going on when he first got home. Everything was overwhelming for me, for him, for the kids. Too many people in the house, too many sounds, too much going on overwhelmed Butler greatly. On Thanksgiving day, my family and his family came together at his moms house to eat. He spent the majority of that time sleeping in his moms room. It was a different Thanksgiving than what we usually experience, but we were just happy to have him under the same roof as us. If he wasn’t doing some kind of therapy or eating, he was sleeping. This went on for a few months after he came home, and it honestly got to a point where it greatly concerned me. I wondered if it was normal for him to be sleeping like he was months after his surgery. I wondered, if this was our new normal.

    Butler’s treatment consisted of one month of daily radiation (45 minutes daily, Monday through Friday) alongside one month of daily Temozolomide (Chemotherapy – this was a daily pill, not an infusion.) The radiation treatment was incredibly uncomfortable for Butler. You cannot move during your radiation treatment, and the location where the radiation hits has to be exact every single time. To ensure this, Butler was fitted with a plastic mask that was molded to his head. It covered his entire head, part of his neck, and would be strapped down to the table while he was in it so he could not move. It was imperative that the treatment be precise. I remember his beard was so long and thick when he was fitted for his mask, that he couldn’t trim it the entire month he did radiation to ensure it fit exactly as it needed to. The goal of the radiation was to kill any Glial cells that were left behind from the tumor. While the entire tumor was removed, microscopic Glial cells can be left behind, and grow new tumors. Glial cells are cells already in your brain, they serve a purpose, but they have these tentacle like arms all around it that grab onto brain tissue and can cause new growth, so we wanted to eliminate any possibility of Glial cells left.

    Example of a radiation mask for glioblastoma

    Glial cell anatomy

    Butler started his treatment towards the end of December. Every day, we drove to Roper Berkeley, (thankfully we did not have to drive to the Cancer Center in West Ashley every day) for Butler to do his treatment. We did Christmas as usual – mostly- we had family come to our house this time so as to not wear Butler out. We celebrated our daughter’s 10th birthday, a day I was so thankful he was able to be with us for. Things *almost* felt normal. Most of the time, I think people assume chemo makes the patient’s hair fall out. While that is mostly true, it depends on the type of chemo. Butler’s hair fell out from his radiation, and it only fell out where the radiation hit his head. He head a line about 2 inches thick around his head where his hair fell out. He did wind up shaving it more towards the end of his treatment. His scalp became red, flaky, and inflamed from the radiation. I used my homemade Calendula Salve to help soothe it.

    Ella’s 10th birthday
    You can see where Butler started to lose his hair, and the irritation on his scalp

    On January 19th, 2024, Butler completed his radiation treatment, and first month of chemotherapy. He rang the bell at Roper Berkeley, and when we went home that evening, he burned his radiation mask. He took the month of February off to give his body some time to recoup. March 2024 started the long and grueling process of 5 days of chemo every 28 days. We learned, thanks to our Neuro-Oncologist at MUSC, the best time for Butler to take his chemo was at night on an empty stomach. That gave his body a chance to better absorb the chemo. He would take Zofran for nausea about 30 minutes prior to his chemo. We had a great system down. During the weeks he was on chemo, I would try to make dinner earlier so he could eat and give his stomach a chance to digest. I tried to give him the space and grace he needed to get the extra rest he needed during those weeks. The dosage of chemo on his 5/28 rounds was higher than his month of chemo, and around month 6 or 7, his oncologist upped the dosage again. His body seemed to handle the chemo decently well, with exhaustion being the only main symptom. There were a couple of times where he would get pretty sick, and by month 8 he hit a wall where he didn’t know if he could keep going. I told him I would support him no matter what he chose to do. If he chose to end his treatment, I would stay right by his side. This was his treatment, his decision. But the man is strong willed, and he kept pushing through, finishing his treatment in March of 2025. The long, drawn out process was finally over, and on April 21st, he had his first clean MRI post treatment.

    Butler will continue to have routine MRI’s every 2 months or so to monitor his brain.

    Butler’s last day of radiation! 1/19/2024

    I would like to take this opportunity to thank everyone who has prayed for my husband and our family, to everyone who has given to our family. When Butler first went into the hospital, I truly did not know how my family would make it through. There was so much uncertainty and fear, and I have seen firsthand the work of God through this entire situation. I learned we have the most amazing village around us, and it warms my heart like you wouldn’t believe to see the support for our family. We love all of you, and “thank you” will never feel like enough. We are still traveling this road, and will for the rest of Butler’s life; but having the support system we have makes it all the more better.

  • My husband has terminal cancer – and I’m pregnant?!

    Let me just preface this by saying, I get to a point in my life where I feel like nothing else crazy can happen. I make a plan, I envision how my life is going to go, and BAM life knocks me upside the head and throws me another loop. And this is a crazy one! I guess this story is the perfect example of succumbing to the ups and downs and unexpected ways of life.

    I had my first child when I was 21 years old. I had only been dating my husband for a year when we conceived, and he was living halfway up the coast in Baltimore. 8 Months after Ella was born, we moved to Fayetteville, NC to open a furniture store. The following years were so full of running a business, planning a wedding, and raising Ella away from our family that I didn’t think we could handle another child. So I got on birth control, and we just lived our life. I thought about more children every once in a while, but the older Ella got, the more secure I became in accepting she was our only child. She was my little buddy, and I didn’t really think I could love another child the way I loved her. (boy was I wrong about that!)

    Fast forward to when Ella was 9 years old. I had been off of birth control for almost 4 years, and had been actively working to heal my hormones through pro-metabolic eating, herbs, and generally trying to get my body in a better place. We were in the middle of selling our home in Florence, SC and were preparing to make the move back to Butler’s hometown of Moncks Corner when I noticed my cycle was late. After an entire life of my periods being wildly irregular, I had 2 cycles within 28 days of each other for the first time ever. That 3rd cycle never came. I took a pregnancy test, and BOOM. Baby number 2 was on the way. I’ll be honest, I was TERRIFIED. I had 9 years in between my kids! I was starting over completely and totally. I had no baby items, we were selling our house, we were in between businesses. I didn’t know where we were going to live, what we were going to do for work, holy shit we were in trouble. Nevertheless, we pushed forward, moved home, and started the process on prepping for baby number 2. This wasn’t the first baby where our lives were far from settled, and turns out, it wouldn’t be the last. Babies come earthside when they are ready, not when mom and dad are ready.

    I had spent the last few years learning about natural home births, after getting to know women who focused on attachment parenting, home births, sovereign births, and I found it beautiful. I told myself if I had another baby (thinking I most likely never would) I would do that. I would want many more children. I would have them all at home, I would homeschool them, and spend my days raising and nurturing them. Thomas was born at home, in the same bed he was conceived in, in February 2023. I immediately wanted more babies. I wanted to experience that oxytocin high over and over again. I was hooked!!

    We had JUST opened a mattress store a month before Thomas was born, we were living in a tiny 2 bedroom house, and I wanted to let my body heal before we started trying again. We were looking to the future, trying to figure out when we should start trying again. When Thomas was 8 months old (what is it about big things happening when my kids are 8 months old?) Butler was diagnosed with a terminal brain cancer, Glioblastoma. We learned his cancer is genetic, so we decided between the risks of our children inheriting the cancer later in life and the potential that I could be raising these children on my own, the responsible thing to do is not have anymore children. I knew it was the right decision, but this was one of those times where my heart and my brain did not align. My heart was shattered. I had finally come to a place in my life where I wanted all the kids, and that dream was gone.

    I actively grieved the children I would never have, and worked on it in and out of therapy for so long. It was so hard, though. Everywhere I looked, I saw pregnancy announcements, birth announcements, and I was jealous of those women who got to have the babies they wanted. They didn’t have to worry about if their husband, their life partner was going to die. “How long do I have left with him?” They didn’t have to worry about the financial stress of cancer, of having the sole provider of the family not be able to provide anymore. Of course, I truly don’t know what these women were stressing about. Everyone has stressors, no matter how perfect someone’s life may look on social media. But my heart was hurting, my brain was telling me lies. As they always say though, time heals all wounds. It hurt less over time, and I honestly became consumed in keeping my family afloat. I didn’t have time to grieve anymore, I had to keep pushing forward, and so I did.

    Butler was on an incredibly extensive treatment of chemotherapy. He did one whole month of daily Temozolomide, followed by 12 months of 5 days of chemo every 28 days. Throughout his treatment, his dosage would increase periodically. Temozolomide is a pill, which was a relieving and new concept to us. We always thought his chemo would consist of constant trips to the hospital and being hooked up to infusion machines. We were told before Butler started his chemo that we needed to…take certain precautions… while he was on his chemo, considering the changes the chemicals can have on his body, bodily fluids included. We also had always been told, heard, ASSUMED that chemo can mess with your sperm count, or ruin it altogether. But different cancers require different chemos, and maybe his chemo didn’t effect his sperm like others do, maybe he has super sperm? I don’t know. All I know is this man got me pregnant for the 3rd time!!

    Butler completed his chemotherapy in March of 2025. It was so liberating for him! We finally felt like we could move forward with our life, and start focusing on getting back to “normal.” About halfway through March, I started to feel incredibly run down, and sick all the time. I had taken the role of the sole provider of my family after being a stay at home mom for 6 years. I started a cleaning business in July of 2024, and after many months of hard work and word of mouth, my business was finally taking off. It was hard work, and not where my heart was. My heart was being a stay at home mom, cooking, cleaning, and educating my children. It sounds wildly domesticated, but I truly believed that is what God put me on this earth to do. Obviously, things happen out of our control, and you have to do what you have to do. Butler was staying home with our children, filling my role as best as he could, but neither one of us were happy with the roles that had been bestowed upon us. I thought my exhaustion and general feeling of crappiness stemmed from me not living out my purpose. I thought I was emotionally, mentally, and physically burnt out, but how was that possible? My feeling of being ill only got worse. It got to a point where I was nauseous all the time. I didn’t want to eat anything. I couldn’t even speak half the time without gagging. What the hell?! Was my body riddled with stress? Was my body rejecting my current lifestyle? I started questioning if I had mold poisoning.

    My best friend and my sister in law both casually mentioned that maybe I was pregnant. Yeah right!! I have never experienced morning sickness with any of my pregnancies, surely it wasn’t that! We had been using protection because of Butler’s chemo, we weren’t…incredibly active at the time because hello…. chemo takes it out of ya. And life, lots of life. I quit nursing Thomas 2 weeks into February when he turned 2. Prior to that, I had 4 regular cycles in 2024 but by March 2025 I hadn’t had a cycle in 5 months. There was NO WAY I was pregnant. But I was desperate for answers. So, on April 7th, just to eliminate the possibility, I decided to take a test one night right before I hopped in the shower. When I say that test came back positive immediately, it came back positive IMMEDIATELY.

    I had a meltdown. How could I be pregnant?! As much as I grieved not having more children, this was not going to work now! I was working my ass off trying to pay the bills, and feed my family, and I was barely doing that. Life at home felt like it was barely hanging on with Butler doing the best he could, we have 1 car, a 2 bedroom house. Ya’ll have seen the housing market, right? OMG how are we going to make this work?? What happens if Butler develops another tumor? What happens if i’m a widow in my mid thirties with 3 kids?! My mind was racing, all the bad thoughts running through my head. Meanwhile, this is my husband…

    Ya’ll, this man was so excited! He told me he had been wanting another, had been wanting to convince me to have another. Is there something wrong with your brain, sir?? (Get it?? – you gotta laugh to keep from crying my friends.) I have to believe God has a plan for everyone, us included. I have seen him work in our life, especially in the last 2 years. I have to have the faith that things will work out for our family, for my husband. We told our family pretty quickly because we were kind of freaked out. We thought if we told our family, it would relieve some of that fear, but they were just as freaked out as us. I’m sure some people think we are wildly irresponsible, crazy, whatever. We know condoms don’t always work!!

    We did some research, and chemo has a very low chance of causing birth defects, especially when it’s the male taking the chemo. The reality is, this baby was meant to be. All of my babies were meant to be, and they all have their own special story. At the time of writing this, I am newly in my 2nd trimester, Butler has gotten a job in sales, something he is passionate about, and I am doing everything I can on my end. The car, the house, that will come in time. We may be a little bit uncomfortable if the baby comes before we can find/afford a bigger house, but hey, my family is comfortable with being uncomfortable. I do intend to birth this baby at home as I did with Thomas, and we plan to do an early DNA test to check for abnormalities, and this baby’s anatomy scan will also be beneficial in that kind of information. In the meantime, faith is what is getting me through. I never thought I would have more children, and here I am, pregnant with my 3rd. It truly is a beautiful miracle. A scary miracle, but a beautiful one nonetheless. I’ll keep everyone updated throughout my pregnancy, and if you have any questions about this experience, leave them in the comments below and i’ll make sure to answer them. Thanks for reading!

  • Butler’s Brain Cancer Story part 4

    Throughout the entire process of Butler’s craniotomy & tumor resection, his coma, intubation, and process of getting him off the ventilator and finally on a path to healing, we had not received any information in regards to his tumor. We (not so) patiently waited for news on his tumor, but everything else going on had everyone a bit distracted. A few days after Butler came out of his coma, we received news from his neurosurgeon that they received the test results from his tumor, and we made plans for him to meet and speak with us later that day. This moment felt so heavy as we wondered what news would come from the neurosurgeon. I sat on one side of Butler, and his mom sat on the other side as we waited to hear the words that would forever change our lives. “Butler’s tumor came back as Glioblastoma – brain cancer.” It was like the entire world came crashing down, but the full weight was not felt by me for a while. It took forever for me to process the information that had just been given to me. I watched as Butler and his mom reacted, and I tried to keep my tears inside. Obviously, everyone’s emotions were high. I held Butler’s hand, and said all the things I could think of to bring him comfort. “I’ll be by your side no matter what.” “We are going to make it through this.” What do you say to truly comfort someone who was just diagnosed with a terminal cancer? I was doing everything I could to comfort him, but inside I was falling apart.

    Butler’s father, Marion Graham passed in 1999 from the same cancer, Glioblastoma. After Butler’s official diagnosis, I did as much research as I could. I learned that only 5% of Glioblastoma cases are genetic, and Butler was a part of that 5%. I didn’t need a doctor to tell me that. We also learned after digging further into his lineage that there were other cases of GBM in the family. There are only 12,000 new reported cases of Glioblastoma in the United States every year. This was not a coincidence. His oncologist swore it was not genetic. Fast forward about 6 months later, he comes back and tells us new studies are showing it actually can be genetic. Insert eye roll here. My research also showed the average prognosis of GBM is 6 to 8 months. After the happiness of my husband making it through a brain tumor, a heart attack, and a stroke, we were looking at a very grim outcome. That did not stop our hope, it did not stop Butler’s determination to learn to walk and function again. We kept pushing forward, because we had children depending on us.

    The rest of Butler’s hospital stay consisted of daily physical therapy, occupational therapy, speech, and getting him ready to go home. He was quickly growing tired of being away from his family every night, of eating hospital food, of not being able to go outside. I believe a crucial part of healing is exposure to the sun, and everyone in the hospital who is able should be taken outside for some good old fashioned sunlight. There were 3 times where we were able to get his nurses to wheel him outside for some sunlight exposure. One time was when he was still in ICU, his nurses along with me and the kids wheeled him outside in his recliner. I will never forget the happiness on his face, the joy in my heart. It was like we were taking a walk as a family again. His nurses at Roper St. Francis were seriously top notch, and we will never be able to thank them enough for loving Butler the way they did.

    When we couldn’t get Butler outside, we talked the nurses into allowing us to wheel him in his wheelchair around the floor. We would load Thomas up in the stroller, and Butler in his wheelchair, and we would walk lap after lap. The floor he was on was a large circle with 2 nurses stations in the middle, so it was perfect. I remember feeling like we were a disturbance to others around us. I don’t really think we were, but it felt like it. I really just wanted to be with my husband and kids. For us to feel some kind of normalcy again, and walking those laps around the hospital floor was normal at the time. We had so much fun doing that, and it helped keep Butler’s spirits up. He struggled whenever I took the kids home for the night. He would beg me to stay overnight, but with the kids I just couldn’t. His mom and sister took turns staying with him because none of us could bear the thought of him being alone. When I wasn’t with him at the hospital, he was blowing my phone up! At the time it broke my heart and stressed me out, because as soon as I would leave he would be calling and texting me asking where I was, when I was coming back. Now, we look back at those old text messages and laugh because he really was being quite silly! Not long before we were able to take him home, he had 34 staples removed from his head. According to Butler, it was incredibly painful to experience.

    Soon, there were discussions of Butler going to stay in a rehab facility downtown. Butler DID NOT want to go to a rehab facility. He wanted to go home! He was looking at 1 to 2 weeks in the rehab facility, and the thought of that made him absolutely miserable. At the time, I thought it was what he needed, and even though he dreaded it, I was prepared to drive downtown everyday to be with him through rehab. Then, literally overnight, the decision went from him going to a rehab center, to “He may go home TODAY!” TODAY?! I was not ready. We have 3 BIG dogs (my wonderful best friend had been keeping them in the weeks Butler was in the hospital. If you ever need a wonderful in-home boarder, contact The Hippie Mutt Hutt,) and a really small house. Butler was still somewhat unsteady on his feet, I had a baby, and I knew that there would be so much on my plate in helping him with the most basic things at home. It wasn’t that I wasn’t willing to do these things, but I was scared. I was so afraid he would fall at home because of the dogs. So afraid of what our new life held at home, outside of the hospital, outside of all the professional help. Could I handle all of that??

    On November 18, just in time for Butler to be able to enjoy Thanksgiving, he was released from the hospital, and we went home to continue his healing. From there, we would start his extensive treatment of radiation/chemotherapy, and face our new life together; navigating cancer and raising a family.

    If you’re still here, reading and keeping up, THANK YOU! Part 5 will be released soon.

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