Our Cholangiocarcinoma Story: A Big WTF

On May 1, 2018, Matt and I found out we were pregnant with our first, and subsequently only, son, Bryson James (aptly named Pistachio at the time). In August of 2018, we moved from our beloved townhouse in Baltimore City to what was supposed to be our forever home “out in the country.”  On January 14th, 2019, I gave birth to our son and we became parents. One week later, at the age of 34, my husband Matt was diagnosed with Stage IV Cholangiocarcinoma (pronounced co-lan-gee-oh car-si-no-mah), or Bile Duct Cancer. Our lives were changed forever. 

It has taken me five months to gather the strength to write this post, and I write it with mixed emotions. I don’t want Matt’s cancer to define his legacy; it doesn’t and it never will. While cancer may have marred one year of his life, the 30+ years before were full of  energy, life, charisma, and love;  it pains me to even address this. You can read about that here. I hate talking about cancer; I hate talking about sickness, sadness, and hospitals. But I also know that Matt left me with a mission to spark change; to provide hope and to continue fighting in his place. I’m not a scientist; I’m not a doctor; I’m not a trained healthcare professional or counselor; I’m a 34 year old widow with a pen (or keyboard) and I hope that through my words and my actions, I can affect positive change and do a small part in providing hope.

So, here is this chapter of our story. 

Leading up to the Cholangiocarcinma Diagnosis

I don’t recall dates exactly, so you’ll have to bear with me. I’d like to preface this all by firmly asserting how medically conscious my husband was. He never missed a doctors appointment; he never ignored a symptom. He’d often be my voice of reason during my intense hypochondriac moments, assuring me that “if I was really worried, I should check with a doctor, at least for peace of mind.” As an example, he found a tick crawling on his skin once, immediately made an appointment the next morning JUST TO MAKE SURE the tick didn’t bite him and he didn’t get Lyme’s disease. 

So when he started experiencing some mild stomach discomfort in late November, we joked around that he was probably having “sympathy pains” in response to my ever growing belly. In 2002, Matt was diagnosed with a mild form of Crohn’s disease. He went on medication early on, but had been symptom free for almost 18 years. He never required any procedures, and went for a colonoscopy every two years to keep an eye out. He started to think that maybe his Crohn’s was flaring up, so he immediately called his GI doctor to schedule an appointment. After some blood work and an exam, the doctor didn’t feel as though there was any cause for alarm. He had a few liver enzymes that were slightly off, but they weren’t anywhere close to what would cause concern, and can be heightened for many, many, non-urgent reasons. They told Matt to call back if symptoms didn’t go away or lessen in a month. Ha, a month. SMH. 

Matt continued to have stomach pains, similar to what he experienced when he had Crohns flare ups. These pains would come and go,  but they were never to the point of preventing him from carrying on life as usual. He was working out, going to work, doing yard maintenance, accompanying me to all of my appointments, eating and drinking as he normally would, and even engaging in his crazy holiday antics on Christmas Eve. After our neighborhood Christmas Party, I remember, as a very pregnant, sober wife, impressing upon Matt how things were going to change once Bryson was born. Ugh. 

Then, the random side pains came on. Right around the beginning of January, Matt started getting shooting pains in his side. Though he brushed it off at first as a workout strain, he started having trouble laying on his side at night. He decided to go to the doctor, who agreed it was probably musculo-skeletal, but asked him to get X-Rays done, just to err on the side of caution. On the eve of my due date, we went in for the first set of what would be many imaging appointments.  At this point, any form of cancer was SO far off my radar. Oddly, I felt like the tech who was conducting Matt’s X-Rays that night  kept looking at me, knowing I was very very close to giving birth, with this look of pity. I didn’t read too much into it, but looking back…she knew something was up, and there was a solid chance it wasn’t good. 

The next day, I was at work on my due date when I got a call from Matt. He was heading into the city and was going to pick me up. We had to go to the ER. His doctor had called and the X-Rays showed what looked like lesions on his liver and a distended gallbladder. Still, at this time, the doctor thought that maybe his gallbladder had erupted and he needed to get to the ER. At 40 weeks pregnant, I sat in the ER for about 12 hours. Scared; anxious; irritable. All of those words can sum up how we felt at this point. We’d grow terribly accustomed to these feelings moving forward. We left knowing little more than what we entered with. Matt’s blood work all came back fine; he had no symptoms of any form of malignant disease, and all his vitals were great. However, the scans still showed those lesions and it was recommended that Matt meet with the hepatologist.

I’m not going to get into the disdain I have for some elements of patient care and the need for reform within certain aspects of our medical system in this blog, but don’t worry Ralph, I will address those in the future. Needless to say, it took some time for Matt to get in for a meeting with the hepatologist, who then ordered more detailed blood work. In the mean time, I gave birth to our son. Despite feeling disenchanted with the hospital we had been dealing with, Matt chose to meet with the hepatology team there, simply because that’s where I was giving birth and he wanted to make sure that if anything happened, we were in the same location. 

I couldn’t sleep the second night I was in the hospital; I had these awful, anxious feelings surrounding Matt’s health. I tried not to think of worst case scenario, but at this point, with no other explanations, I couldn’t help but mull over it. A week before, I read the doctors notes Matt was sent home with. I saw that word: malignancy. I saw another word: metastatic. They were couched with terms like “possible.” I called Matt in the middle of the night, and he calmed me down; he assured me that he was scared too, but we were going to deal with whatever got thrown at us. It just couldn’t be…cancer?! Not us! 

It took awhile for Matt’s blood results to come back because of a holiday weekend (don’t get my started on that ). When they did, they did not look good. The markers in his blood used to detect possible cancer were quite high. The team wanted to schedule a biopsy. I was in the room with Matt when he took this phone call; I dropped to my knees in tears. It felt like I was living in a nightmare. This can’t really be happening right now. I could hear the cries of our days old son in the background and it all felt surreal. In the meantime, Matt had sent his imaging out to get second opinions from a team of doctors closely connected to our family. They agreed that it didn’t look good for Matt. It appeared as though he had malignancies on his liver, but they didn’t look like liver primary malignancies, indicating some form of metastatic disease. A lot of thoughts were thrown around at this point, but no one could know anything for sure until a biopsy was done. Can you imagine we were at a point of hoping it was one type of cancer vs. another?

Before Matt could go in for a biopsy, he noticed that his urine seemed really, really dark. Maybe he wasn’t drinking enough water? Impossible; Matt drank at least a gallon a day. Eventually, that pee turned brown and Matt, once again, was asked to go into the ER. This was the final time Matt and I would be in our house together before his cancer diagnosis was confirmed. 

Eventually Matt was admitted into the hospital and went through a series of tests. The GI team had to put a stint in his bile duct to open it up, and did the biopsy then. I had been spending my days in the hospital, and my nights at home with my newborn. As I sat in the passenger seat of my dad’s CRV the morning we were getting results from the biopsy, I kept telling myself “whatever it is, it’s treatable.” That’s what my father in law had said; and I stood by that as my crutch, praying to god that this was some big mix up and it wasn’t as serious as we all suspected. 

I walked into the wing where I was supposed to meet the doctor, arriving before my father in law, while my dad parked the car. The GI doctor brought me into a room and asked me to sit down. Alone, he explained to me that Matt had cancer. While they couldn’t 100% confirm the type of cancer, in his professional opinion, he believed it was Cholangiocarcinoma, or Bile Duct Cancer, that had spread to Matt’s liver. The prognosis wasn’t great: days, weeks, months. He didn’t know. He affirmed that he isn’t an oncologist and that there may be clinical trials and new treatments to provide some sense of hope; the fact that Matt was young and healthy otherwise played in his favor. I never told Matt about that conversation, especially the “days, weeks, months” part. I just wanted to keep hope alive for him as much as possible. 

Treatment went well for the first six months.

I cannot tell you how grateful I am for my father in law, and how disenchanted I was with the medical system when I left our first hospital. The ONLY reason we got a diagnosis and treatment as fast as we did is because he interjected and did not take “no” or “maybe tomorrow” for an answer. I hope he knows that he did everything he possibly could for his son, and Matt knew that; he held onto that and it gave him hope every damn day of this nightmare.

When we finally left the hospital, Matt was put on a chemotherapy regimen that required him to go into hospital every other week for about 4-5 hours. The chemo he was put on is actually for colon cancer patients, but because his bilirubin levels were still a little high, this was the safest option. He would go in two months later for his first scans/blood work/consult. We decided to transfer Matt’s care to Johns Hopkins, as it is one of the leading cancer institutions in the country and, assuming that we’d have to look into clinical trials at some point, this was the place to be.  

Physically, Matt was feeling pretty good. He tolerated the chemotherapy regimen well and aside from some tingling and numbness in his hands, he felt normal. Mentally, he was in just as dark of a place as any of us would be. He was robbed of all the emotions of being a new dad; he was trying to grapple with the very real possibility that he would die. In a matter of weeks, his entire realm of happiness disappeared. His life, our lives, had been turned upside down. I mean honestly, what. the. fudge. He emotionally shut himself off from me and from Bryson during the initial weeks. Understandably so.  

Personally, I was scared, shocked, confused, angry, and determined to do everything in my power to hold things together. I hope you never have to experience simultaneously telling people about the birth of your son and the cancer diagnosis of your spouse in the same conversation.  Any time someone would text or call me, in shock, I would respond with “but he’s young and healthy and he’s going to fight this.” I wanted everyone else to feel hope and confidence in Matt’s ability to beat this. One of Matt’s physicians told me never to forget that there is always hope; I kept that in the forefront of my mind throughout this journey. I gave Matt the space he needed to cope on his own, but always expressed how I was there with him through it all. In sickness and health. We would do this. Underlying all of this,  I grappled with the chaos of being a new mom; I knew I couldn’t crack. I didn’t have that luxury; I had an infant son who needed me now more than ever. I spent a lot of nights over this past year rocking Bryson and just praying with every ounce of  faith I had that Matt would be the miracle; that the book I’d be writing one day would surround his personal journey in overcoming cancer. That was the book I wanted to write. Not this. 

About a month in, Matt ended up coughing up blood. Understandably, we all freaked out thinking that the cancer may have spread and the chemo wasn’t working. Matt ended up suffering from bilateral pulmonary embolisms (blood clots in his lungs). Apparently this is a less common side effect of chemo; Matt was lucky he went to the hospital when he did. The blood clots were serious, but Matt recovered VERY quickly. He had some blood work done during this time, and some preliminary measures indicated to us that there may be some positive movement in Matt’s numbers; of course, we wouldn’t know until his scan and consult, but the doctors kept discussing how Matt’s quick recovery is a testament to how well he took care of himself and how “healthy” was. 

It was after the PE experience, that Matt decided that it was time to take the bull by the horn and attempt to return to some sense of normalcy. He started going to therapy and working out again. We started eating dinner together at the table and he even started reading to Bryson.  We hung out with friends when we could and that always lifted his spirits. One Friday night, a group of our friends came over the house, and Matt expressed how it was nice to just have some normal conversation. There were a lot of highs (in relativity) and lows; Matt felt completely normal, physically, which sometimes made it even harder for him to understand this all. How can he feel so healthy, but know he’s so, so sick? We all felt that way. If you didn’t know the battle Matt was facing, you could not tell. He appeared healthier and way more fit than most. 

Fast forward to the end of March and Matt’s first scans came back great. His markers were SIGNIFICANTLY down and his lesions had all shrunk more than 50%. This response was not common, and the oncologist was very happy. We got this “good news” before our family trip to Florida. The glimmer of hope became stronger and helped to mitigate some of the tremendous pain we all felt. 

Over the next four months, things seemed on the up and up. Matt was looking and feeling (physically) like his normal self. He lifted weights every morning, even on the mornings of chemotherapy. I kid you not. He started playing with Bryson more,  drinking the occasional beer with a buddy (oncologist recommended), finding new projects around the house, playing with Charlie, and making a solid effort to provide us all with a minor sense of normalcy. The toughest times were at night. We’d lay in bed, and the hard conversations would happen. We talked about cancer, death, and how totally unreal this all felt. We were living a nightmare. Six months ago, this wasn’t even on our radar. We were just a normal couple, with the only “worry” being how much our life would change with the birth of our little man. It’s still mind numbing for me. 

 Matt didn’t want to hear “you’re strong” or “you’re going to fight this” or “you need to stay positive.” He just wanted to vent how he truly felt; and as much as it hurt to hear all of this, I know how vital it was for him. He needed to be vulnerable with someone, and that person was me. 

Change in Direction

Matt had a series of positive scans, giving us all hope and even prompting his physician to chat with him about potentially being able to take a break from chemo at some point or getting to a state of “no evidence of disease.”  Then, in late July, right before heading out for a wedding in New England, we had the first “not great” scan. Some of Matt’s lesions had continued to decrease in size, but he had one that was growing. We had yet to try out the chemo specifically used to treat Cholangiocarcinoma and Matt’s oncologist felt like this was the time to make the switch. 

While I tried to stay hopeful for Matt, and for the rest of our family and friends, I divulged a lot of my insecurities and sadness to my parents. I may have seen the worst of Matt; but they experienced the worst of me. The rage and the tears that accompanied this entire situation. 

The second chemo was much harder on Matt, taking a lot of him physically. He pushed himself to still work out, but you could tell the chemo (and perhaps the cancer) were taking their toll. On Matt’s 35th birthday, his brother pulled together a great surprise birthday for him. His buddies from CT came down and all of our friends from Baltimore joined in the celebrations.This may have been the last time I saw Matt happy. 

The Last Couple Months

This chemo didn’t do much to improve Matt’s condition, and we were now left in a very scary place. Cholangiocarcinoma is a rare cancer; it’s incredibly rare for someone Matt’s age and level of health.  Unfortunately, as a result, there are few approved treatments available, which is why the mortality rate is so high EVEN when it’s caught in earlier stages. We knew we may have to go in the direction of clinical trials one day, but we were hoping that day was far down the road.  

My sister in law had been researching clinical trials across the country and presented us with one very promising one, and a few others. Unfortunately,  because of his history of Crohn’s disease, Matt was continuously turned down for these trials. Want to make a gut-wrenchingly awful situation even harder? Add in the constant denial of potentially life saving treatments. To say Matt felt deflated and disheartened is the understatement of the century. As hard as it was for all of us, it was ten fold harder for him. I watched him play with Bryson, with tears in his eyes, knowing that the reality of seeing his son grow was slipping away.  As for me, I tried to focus on what we could do…anything. I researched treatment options and protocols as often as possible. I taught myself about terms associated with cancer, clinical trials, criteria, etc. The mission was my distraction.

Slowly, Matt physically started to deteriorate. His body was getting more tired, with treatments that weren’t working and hope that was fading faster and faster. We were all in hyper research mode. We looked into all trials, contacted professionals everywhere, and did our very best to figure out what was next. I can say with confidence to this day that Matt never felt like there wasn’t a next step. I guess there’s a silver lining there. 

It got real hard. And I mean harder than I thought I could survive. If you’ve ever seen your husband break down, amplify that times a thousand. I had never seen Matt cry uncontrollably  before; I couldn’t help but break down myself. I tried so hard to keep it all in and keep it all together; I mean, what hope would I provide him if I started crying all the time? But in these moments, I just couldn’t help it. And my poor baby…I’m glad he will have no memory of this. His innocent eyes have seen so much; I grieve for him more than I grieve for myself. 

Then, things got real bad.

I won’t go into detail about everything that happened leading up to Matt’s final hospitalization and everything about the hospital stay. Some of this is very personal not only to me, but for our family.  My last memory outside the hospital with Matt was going to get our Christmas tree, a tradition he refused to give up for cancer.

Matt had a procedure that we were hoping would lessen the burden on his very diseased liver, but it was probably too late. A couple days later, when we went into the hospital, Matt was mildly in and out of it, but it got progressively more intense as the weeks wore on. Terms like “hospice” and his “body shutting down” started to fly around. Still, we hoped there would be a turn around. We held on to time. 

I stayed with Matt day in and day out, only going home a couple of nights, as my mother in law, father in law, and brother in law held down the fort. There were many heartbreaking moments during this hospital stay; there were visits we knew were final. Matt, in his semi-lucid state, told me that he was still holding onto hope; I secretly think he just didn’t want me to think he knew what was coming. He knew how painful this was for me; the only discussion we EVER had about “things possibly going wrong” were correlated to his insistence that I find happiness again and that Bryson have a father figure. He wanted me to know that he worried about us, even more than himself. 

We thought the move from the hospital would be to a hospice care center, or even home, but not to a funeral home. Matt had other plans. Things fell apart quickly, and on Christmas Eve, Matt ended his fight with Cholangiocarcinoma, leaving this side of the universe with a whole lot of broken hearts and spirits. To that point in my life, I had never seen someone die. I mean, I’ve had people die in my life, some in very tragic ways. But I had never experienced death like this; watching the man I love slowly fade away. It is the hardest, most inherently wrong, experience I’ve ever gone through. Everyone knew it around us too; the nurses, the social workers, the doctors, even. This was not supposed to happen to a young family. This was not supposed to happen to people who were just like them. 

And here we are.

If you were to ask any of my closest friends and family about my greatest fear in life, or what caused me to have night terrors and anxiety, they would have told you cancer. I didn’t watch shows like Grey’s Anatomy, ER, or even Touched By An Angel, because it caused me so much anxiety. And there I was. Here I am. Living my nightmare.  I try to focus on the happier times; the pre-cancer times. But, I often flash to the worst times, like the time Matt had tears in is his eyes as we drove to the grocery store and “Fat Bottomed Girls” came on the radio. He didn’t have to say anything; I knew that look. It was a look I had, to some degree, flashed myself. The mourning of our past life; a life void of complications and pain.

It stings to think about what we’ve experienced. I know I’m not the only person who’s lost his or her partner; I know that I was not the only person to say goodbye to her love on Christmas Eve. I know I’m not the only person left to put the pieces back together, try to make sense of the nonsense, and move forward without feeling the weight of this incredible baggage. We all cope in different ways. For me, I need to do what I can to continue the fight for Matt. So, if you find yourself annoyed with Matt Moment Mondays, posts about A Matter of Hope, or anything else correlated to my experience, you should probably stop following me. This is how I move forward; this is how I take this shitty situation (yes, it’s worth a swear) and try to do something actionable. As  Matt would often allude to, prayers and thoughts are nice, but action is what we need. 

I do hope I can fulfill Matt’s wishes one day; I can move forward, keeping his legacy and spirit alive, while creating a happier life for us. I will never be able understand this; I will always have anger and sadness. I miss Matt every day and every night. I grieve for my son, knowing that Matt won’t be here to see him off for his first day of school or help him navigate through the strange teenage years. I grieve for Matt, knowing that he was robbed of all his ever-present happiness and tender moments with his son. I hope he’s out there, watching over us and able to experience the milestones from afar. I hope that Bryson will feel that ever powerful presence of his father through the stories and moments he left all of us with.  I hope that if I do ever find love again, that person understands that a part of my heart will always be with Matt. I just…hope. 

I wrote the synopsis of our year for a purpose. As hard as it has been to rehash the most traumatic period of my life, it’s important for people to know. Whether it allows the few who understand a source of empathy, or the greater audience a little push to give your loved one an extra hug and kiss tonight, then it’s served a greater purpose. I am lucky to have loved one of the greatest humans to walk this earth.

Until next time,

Xtina