My Husband's Cancer Journey and Updates

This will be a long blog post. And I will post updates at the bottom as they become available. I wanted there to be a central location that friends and family could refer to for updates and answers to their questions, if they were available. Thank you for reading my husband's cancer journey updates, and thank you for being a friend!

In December 2019, my husband, Ben, noticed a few swollen lymph nodes in his neck. It was a few weeks before Christmas and he didn't want to alarm any of us, but he told me that he felt like he needed to go to the doctor and get it checked out. We both assumed that it was just an infection or something weird going on, and never really expected it to turn into the cancer hurricane that it has become.

The family doctor he went to measured the nodes and examined him and decided to just wait a few weeks to see if they went down on their own. Of course, they didn't, so he went back to the doctor. She then decided to refer him to an ENT doctor. When my husband went to that appt, the ENT played it all down as "probably benign" and nothing to be worried about, since he was "so young," at age 36. That was, until he found a mass on his thyroid. 

The mass on the thyroid was fairly large and he said that it could be benign, but even it was cancerous, it was likely a slow growing kind that is very treatable. We tried to stay optimistic and didn't really tell anyone. The ENT scheduled a biopsy.

The biopsy was not a simple in office procedure. It was my husband's first hospital experience. It wasn't pleasant, but little did we know, this would be the start of many hospital visits, as the biopsy came back positive for papillary thyroid carcinoma.

We immediately told our boys, then 6, 9, and 11. There were lots of tears and lost of questions. It was a shock to all of us, but we tried to remain optimistic that the doctors would do their very best to treat him and he would be cancer free.

Ben kept hearing the same things over and over as his treatment plan was discussed. “You're a young guy, you should beat this" and "this is the good cancer" and even "this will just be a nuisance to you for the rest of your life." A nuisance? Mosquitos are nuisances. Barking dogs at 2 am are nuisances. But cancer? How can that be thought of as just a nuisance?

His first surgery was scheduled for March 26, 2020. The predicted 3-5 hour surgery took 6 hours, and many more cancerous lymph nodes were removed than anyone expected. We were both kind of naive and new to all of this, and we didn't even realize the dangers of surgery.

This was all when Covid hit the US and everything was shut down. I wasn't even allowed to stay with him at the hospital. We were trying to protect our parents so the boys had to stay home alone for a while when I dropped him off at the hospital. Everyone was scared about covid and while many people offered to help, we opted to follow the precautions and just try to do everything alone. 

Ben went home the next day after surgery, ill-equipped to handle the stress of numbness, extreme sensations, surgery drain tubes and care for those, post-anesthesia fog, and lack of sleep. Ben, who never really ever struggled with anxiety, had a panic attack just 48
hours after surgery. 

We called 911 for an ambulance because we were both scared. The ER assured him nothing was wrong. The ER nurses were not caring at all. He had to be alone during this visit and it was a very bad experience. I remember driving up to pick him up and he was all alone, outside. I drove past the Covid patients drop off as people on gurneys were being wheeled in. It was a very sad experience.

It was a very painful and mentally distressing month of April as Ben laid in bed recovering, while the rest of the world was shut down for the pandemic. The boys were at home and life was not normal and we were likely all suffering from extreme sadness and anxiety.

As Ben regained most of his strength, there was a major loss. His accessory nerve had sustained major stretching in the OR and rendered his shoulder at about 25% capacity. He knew the summer as a youth minister would not look the same, but COVID actually helped him out, because it was not the same for anyone. He stayed optimistic and was given the opportunity to rest and heal.

We had moved to our current church in the summer of 2019 and we both definitely feel this was part of God's plan. We have been in a few different churches since getting married in 2005, but this church was bigger and thus had more willing adults to help out with the youth group while my husband recovered. We have always had a few volunteers who were dedicated to helping the youth, mind you, but this church is very special and like I said, larger, so the number of people with a true passion for guiding youth is much larger. It has truly been a blessing and we have always known that we are in the right place. God lead us to this church and we have learned to accept support from those around us who love us.

Ben turned 37 soon after his first surgery and went to therapy to rehabilitate his injured shoulder. He also underwent a high dosage of radioactive iodine, which is the customary treatment of papillary thyroid carcinoma after surgery. Ben reports that it was not too bad, but it was challenging because he had to be on a special low iodine diet and also do without his thyroid meds for awhile.

Months came and went and he could see the light at the end of the tunnel. He was recovering well and I could see him laugh again and he was slowly returning to his pre surgery self. 

Well, he was 7 months post-op when more swollen lymph nodes were found in the same vicinity, just a bit further past the first scar on the right side of his neck. The ENT surgeon assured him, even if they were more cancer, there would be just a quick surgery to get those last couple he missed. Sure enough, it was “quick.” Well, quicker than 6 hours. At just 2 hours, he bounced back much faster this time. 

By the end of the December, he was determined to start 2021 cancer free and back on track, but that hunch that it wasn’t over stayed with him.

2021 started off great. The church, as I said, has been nothing short of a
miracle in assisting Ben and our family through many of these struggles that comes
with these kinds of burdens. 

Ben went to an annual ministry conference where he was determined NOT to be the object of everyone's sympathy and he wasn't. It was a very relaxing, fun, life giving time. It allowed him a fresh start and to hit the ground running in his ministry, scheduling out a normal winter/spring (socially distanced of course), with very little deviation from his normal work-load. He even launched the idea and got a bunch of leaders excited about a new outreach ministry he was planning to launch soon. 

Then Feb 28, he found more lymph nodes. This time they were lower on the right side of his neck. It was very upsetting. He knew the signs to watch for and these reacted and grew just like the first ones. He mourned. He was angry. We cried together and immediately went to get them biopsied. Sure enough, more cancer.

Only this time, the surgeon didn't have the optimism he had in the first two surgeries. “I will need to refer you to another surgeon,” he said.

If you’ve ever dealt with HMO insurance for things like this, you know this is no
easy task. So on the search we went. We saw 3 different surgeons in Dallas before
landing on one in our network that we felt good about. He anticipated a long
surgery…5-6 hours. 

On May 4, 2021, the surgery lasted 9 hours. His post-op report was “you had disease all over your neck. I tried to save your nerve for 2 hours, but I had to take it.” The nerve was part of Ben's laryngeal nerve. The one that operates one of your vocal cords. Ben, who has always loved to sing, had permanent vocal paralysis to his right vocal cord. The doctor also had to take a vein that supplies a chain of vessels in his face, which caused a permanent droopy eyelid and constant pressure when using his jaw to chew or when exercising. 

The doctor also took so much scar tissue, nerves, and muscles that his neck doesn’t look “semi-normal” like it did after the first surgery. And sure enough the pathology report showed that most of the tissue that was taken, was covered in papillary thyroid cancer.

Loss…so much loss…Ben didn’t know where to start with the mourning. This time he didn’t bounce back. He stayed an extra day in the hospital and let the nurses take care of him. His mother, his sister, and I were thankfully able to stay with him in the hospital as covid restrictions had lifted. We worked together to get him the best care he needed, while my parents gave the boys the care they needed for that week at home. 

We focused on what could be addressed first and started rehabbing that. After such a long surgery, his body didn’t restart very quickly. He was miserable for a week straight. His neck muscles and face were next on the rehab list. Then his
shoulder and his voice. 

He endured his second radioactive iodine treatment after being off his thyroid meds and on the low iodine diet once again. All of this to find out that he is radioactive iodine resistant, which means all of that was for nothing. Some people are RAI resistant, and Ben was one of those people. 

He has also dealt with hypothyroidism and had to get his medicine adjusted. It takes a lot of doctor visits and blood tests to get the medicine right when one of your vital organs is removed. 

After that was treated, he met with a doctor in a voice clinic that gave him hope to restore his voice. Ben spent most of his college and young adult life singing in a four part harmony group. He loves a cappella music and is a beautiful singer. But after his May 2021 surgery, his voice was raspy and he didn't even enjoy singing. Church was hard because he wasn't able to participate in the singing. Of all of the complications of his surgeries, I would say that the paralyzed vocal cord was the worst. It was absolute grief for him. 

In October of 2021, he was able to have an implant placed through surgery that allowed his vocal cord to be propped up, so to speak, and assist it in singing and talking. It has given him a vital part of his life back, but his voice will never be quite the same. He is able to sing again and has even lead singing at church and sung on the praise team once again. He is able to sing with our sons and even recorded an album with his good friend, Brian, in 2024. You can listen to it in it's entirely here. There is also a track with Ben telling his story. It is Track 8: The Interview - Ben's Story. Big thanks to Brian for making that happen.

For the longest time, Ben has referred to 2 Corinthians 4:16-18 as his favorite bible verses. “ 16  Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.  17  For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  18  So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”

Ben wrote on his now closed down blog in 2021, that he didn’t fully relate to this passage until recently. "This is what suffering realizes. We are all wasting away. Some at a different rate than others. But the sooner we realize it, the sooner we can grieve it and then learn thru it. I’m still grieving it. But I can’t wait until I’m on the better understanding side of it. When my eyes are fixed not on what is temporary, but on what is eternal. Then and only then will I achieve the glory that outweighs them all. The glory of the eternal. God’s glory."

I need to take a time out in this story to focus on something important that I wish everyone knew. "Cancer free" is a word that is thrown around a lot. Doctors can say they have gotten all of the cancer, but they usually say they got as much as they can. Treatments can successfully shrink the tumors and keep the cancer from growing...but cancer usually returns. This isn't something any of us want to hear or think about, but it's true. There are some cases where cancer is fully eradicated and it never returns, but that is rare. Cancer usually comes back and sometimes, a new cancer forms. More on this later.

After Ben's vocal cord implant, life improved. A joy was brought back to his life. He was beginning to get back to "normal," his new normal, as he calls it. May 2021 and the months after absolutely were horrible. After October 2021, he had optimism again.

The May 2021 surgery also caused his eyelid to droop. He dealt with that for 6 months until the holidays, when our sister-in-law Crystal introduced him to an eye drop that helped with droopy eyelids! What a miracle! He has used this eye drop since then and it has been such a blessing. It is quite expensive, but it is worth it because it not only improves his self esteem, but his vision.

Because of the surgeries, and for some unknown reason, Ben's nose was affected, as well. His nose would close randomly and he was unable to breathe through his nose, especially at night. He had a couple of surgeries to try and repair that, but they didn't help for long. 

In November 2021, unfortunately he found more lymph nodes and had to have another short surgery, but the recovery wasn't bad. 

Through all of this, he has been able to be an effective youth minister and do his job well. He has, of course, had to take time off for doctor appointments, surgeries, scans, etc. This is, in part, due to the amazing volunteers at our church and a very awesome lady, Melody, a volunteer who has a passion for serving the youth. She has been instrumental in helping the youth group succeed without a hitch when Ben had to be out and we are very thankful to her and her husband, because we know it hasn't been easy, but she does it well because of her love for the youth and for God.

Back to Ben's medical history, finding lymph nodes in his neck had become a common occurrence and in February 2022, he had to have another short surgery. It was getting to be redundant, time consuming, expensive, and arduous, but there was a break in sight.

After the February 2022 surgery, Ben's oncology ENT surgeon recommended him to another oncologist in Dallas, who specializes in testing and medication for cancer, a medical oncologist. 

He sent off his tumors for biopsy and genomic testing and although this had been done before, this new company showed a positive for NTRK.

"TRK fusion proteins, which are encoded by NTRK gene fusions, are oncogenic drivers in many cancers. An understanding of the oncogenic mechanism behind the TRK fusion proteins expressed by these gene fusions and the prevalence of TRK fusion-positive cancers is critical to providing optimal targeted therapy." - ScienceDirect

This brought hope! The fact that we found out what was causing his cancer, a gene fusion, meant that there might be a medication to help....and there wasn't one, but two! 

In February 2022, Ben was prescribed entrectinib, a targeted therapy that is used to destroy cancer cells that are caused by the NTRK gene fusion. After just a few days on this medicine, he wanted to quit. It made him feel horrible. Weakness, fatigue, brain fog, pain, and more, and while he tried to power through the side effects, he quickly realized he needed to quit. 

After a few good scans, September 2022 came around and he and his doctor decided that a few troublesome spots on his CT scans made the need to try vitrakvi, another type of NTRK inhibitor, a good idea. Ben started on this medicine, determine to power through any side effects and get his body used to it. Luckily, the side effects, while still present, weren't nearly as bad as those he had while on entrectinib. He was able to continue his day to day life while on this drug. 

He had great scans for the next 2 years. He was given a much needed break from the surgeries and while he still had to go for scans every 3 months, he felt he was getting a good handle on his cancer and his life. Vitrakvi was an answer to a prayer. 

He has to take these meds every 12 hours and the worst part of this treatment is that he has side effects sometimes before the 12 hour mark, which is his body coming off the drugs. He still had pain, numbness, delayed senses, and a little brain fog, but for the most part, he was able to live life normally and do his job effectively.

In June 2024, Ben was able to climb Mt. Antero in Colorado with our then 15 year old son, Bennett, and some other high schoolers and adults from church. This was very hard on Ben, but he did it!

In August 2024, Ben had his regular scans and they were once again all clear. The medicine continued to work. The doctor decided to give Ben a 6 month break from scans because he was doing so well. This was another nice break, as scans always cause anxiety. But beyond that, Ben is also allergic to the contrast they use for CT scans and must always prepare for each scan with a heavy dose of steroids and benadryl, and must have a driver.

In February 2025, the "vacation" was over. His scan showed a growth on his right collarbone area. We had both noticed that the area was getting larger, but this part of his body, where he has had multiple surgeries, fluctuates a lot, so neither of us had thought anything of it. We assumed the medicine was working and it was just a fluke. When we saw the results of the scan, we both knew that we were just ignoring the tumor growth. 

After a pet scan, a biopsy, and talking with his doctor as well as a friend from MD Anderson in Houston, one of the leading cancer facilities in the United States, they all agreed he needed to get in with MDA as soon as he could to address the tumor.

He was able to get in with a team of doctors and have multiple new scans, MRIs, biopsies and other tests within two weeks’ time. I went with him and his mother stayed with the boys at home, which allowed them to continue on their normal day to day lives, uninterrupted. 

The biopsy results began to slowly come in, and nothing was definitive. They knew it looked suspicious, but no one was able to tell us what it was. It wasn't thyroid cancer, they thought, but they just didn't know, but they knew it needed to come out.

On March 18, 2025, Ben had surgery to remove the tumor, which had grown to 7 cm and was the size of a tennis ball. His recovery went pretty well and they sent the tumor off for pathology.

On March 31, Ben went back to MDA, for the third time, to get more testing done and to prepare for radiation on the spot where they removed the tumor. He also had a biopsy on his lung where there was a 7 mm spot that had popped up. 

The results came back from the tumor pathology and also the lung biopsy. They seemed to be the same thing, but what? What was it? The reports had lots of "it looks like x, y, or possibly z" and "we can't rule out xyz." Genomic testing is still ongoing for the actual tumor, so maybe we will soon find out and be able to find a drug match to try to treat this from the inside out. 

On April 14, Ben will start a series of 5 radiation treatments to the collarbone/neck area. They will be over the course of 10 days. Then, on April 17, Ben will start a series of 4 radiation treatments to the spot on his lung. 

Radiation dates:

April 14 - neck radiation #1

April 16 - neck radiation #2

April 17 - lung radiation #1

April 18 - neck radiation #3

April 19 - lung radiation #2

April 21 - neck radiation #4

April 21 - lung radiation #3

April 22 - lung radiation #4

April 23 - neck radiation #5

Please pray for the radiation treatments to work effectively, to not have major side effects, and for him to be able to tolerate them well. Also, please pray for his cancer to subside and for the genomics report to come back with ANSWERS and a clear path to treatment. We know that Ben will always have to live with cancer, tests, doctor visits, and everything that comes with it. Even if his scans show "no evidence of disease," he will never be able to just quit the medicines and treatments, or the cancer will return. 

We believe in God and we believe in the team at MD Anderson. We are thankful for the years of research and dedication of individuals determined to find the causes and treatments of cancer. We are so thankful for the medicine that allowed him a "break" from the cancer and surgeries for 2 years. 

Ben turns 42 on April 20. I will continue to update this post with any new information, so bookmark it and check from time to time. Thank you for reading and supporting us!

update 4/5/2025 I was working on this post yesterday and just had to make edits, but before I was able to post, Ben started feeling pain in his chest on the same lung that he had a biopsy on two days before. He called MD Anderson and they said it was best to get it checked out, because one of the risks of a lung biopsy was lung collapse.

He drove himself to the walk-in clinic, they decided to do a CT scan to get a better idea of what was going on. He wasn't experiencing labored breathing so we thought he was really okay.

The doctor came in and said there was a 40% collapsed. All of the doctors and nurses were stunned saying "you don't look like someone with a collapsed lung!" They said he needed a chest tube so they wheeled him off to the ER and had that very painful procedure done.

Soon after that was over and I had picked up the kids from school and fed them a quick dinner, I joined him at the ER. He was still on pain meds, but was in a lot of pain.

They had told him he would need to be taken by ambulance to the main hospital for monitoring, but there were major storms and tornado warnings last night, so the ambulances were busy with accidents and also not able to leave for awhile when there were threats of tornadoes or downpours. So, we waited 7 ½ hours in the ER for an ambulance to become available. It turned out those hours were beneficial because it look that long to get the pain under control.

Close to midnight they came to get him and carefully moved him to the ambulance and put him in a room at the main hospital. His sister, Vanessa, switched with me and I was able to then come home and take care of the boys, who, had to shelter in a safe place in our house alone for a while because of the tornado warning.

Thankfully everything was fine and everyone was safe. We went to visit Ben today in the hospital and he had an okay day. The hospital staff was very good and so was the food, he said. However, he is being monitored for at least one more night while his lung repairs itself and is functioning normally.

This could all affect his radiation treatments, we will just have to wait and see.

Please pray for his lung to heal and his treatment to continue as planned. Thank you!

4/6/25 - Ben's chest tube is out and he's home! He is to take it easy and not lift anything over 5 lbs, but he is home and feeling good.

Check out my article on what to do when supporting a friend with cancer.