A couple of weeks ago, my fairly normal, quiet life had a disruption. I pulled into my driveway around 9 pm, coming home late from a work meeting. My husband, Tom, was waiting for me in the driveway with a worried look on his face. He told me to back my car out, that he needed his car because he had to go to the emergency room. We agreed to meet inside.
We switched the cars, got inside and I saw that the whites of his eyes were yellow. Tom had been saying for a few days that he felt dehydrated, no matter how much water her drank, and that is urine was dark in color. He assumed he had kidney stones, which he has a history of. But with the jaundice eyes, it was time to go to the ER. Our 3 year old, Zack, was still awake, so instead of freaking him out too much by having someone come sit at our house while I accompanied my husband to the hospital, I brought in blankets and pillows and told Zack we were going to have a sleepover. I was worried and just needed to be near my son.
I didn't sleep that night. I eventually went back to my own bed, but was tossing and turning and checking in with my husband via text. I was googling things. I was checking and rechecking to make sure my phone was on so I would hear if my husband or the hospital called me. I finally fell asleep around 5 :30 am, only to wake up again at 7 to start the day's routine with Zack.
Meanwhile, Tom was at the hospital undergoing bloodwork, ultrasound, ct scans, etc. He was admitted to the hospital. This would not just be an ER visit where they quickly figured out the issue and then sent him home with medication.
Over the next several days, my routine became waking up Zack and doing our normal morning routine, getting him to daycare, and heading the hospital. Tom's bloodwork was showing that his liver enzymes were incredibly high (in the 1600's, supposed to be under 100), but so far, nothing in the bloodwork was indicating WHY.
My brain told me that this had to be cancer. Because of where I work and my family history of cancer, I couldn't let go of the fact that my husband could have liver cancer. I found myself bursting into tears at various times throughout the day. I tried to stop my brain from going there. I told myself "you are catastrophizing". But that didn't help.
By Monday morning, 5 days after Tom had initially gone to the hospital, it was time to go through a liver biopsy. Because the bloodwork was not showing anything, and his liver enzymes were still very high, a liver biopsy would be the only way to determine what was going on in his liver.
For the next few days, we waited...anxiously. I was balancing being at the hospital during the day with Tom, taking care of Zack in the evenings and mornings, trying to keep up with work responsibilities, and keeping my own mental health in check. It was hard and it was exhausting but I just kept pushing forward.
On Wednesday, two days after the biopsy, we learned that the biopsy indicated Tom had autoimmune hepatitis. This is a fairly rare disease, about 31 people out of 100,000 will be diagnosed with it. Essentially it means that Tom's immune system is mistakenly attacking healthy liver cells, which is leading to inflammation and damage to this liver. This is a chronic illness that cannot be "cured", but can be managed with treatment.
The first round of treatment is steroids, which Tom is on now. The goal is that eventually the liver settles down and we can wean down and off the steroids and be put on a less aggressive medication. Likely, he will have flare ups throughout his life that will lead to inflammation and short term steroid treatment. In the beginning, Tom will need weekly bloodwork to keep a tab on his liver enzymes, and frequent visits to the doctors at the liver clinic.
In other words, it's going to be a long road. He will have to be cautious to not get sick as both viral and bacterial infections could lead to a flare up. He will need to avoid alcohol (he wasn't much of a drinker anyways) and tylenol, stick to a health diet, and be aware of any triggers.
But still, despite the challenges ahead of us, I am grateful. It is not cancer. It is not liver failure. Most likely, he will not need a liver transplant. Tom is not in pain, and feels relatively well, and is able to work. We can rejoice in knowing that we have a plan to move forward, and are away from the terrifying unknowns. We are lucky to have so many incredibly kind, empathetic people in our lives who prayed for us, sent Doordash or Starbucks gift cards, watched Zack, sent presents for Zack, or just have asked how we are doing. The support has meant a lot to us, and I leaned on it to get me through a very difficult 8 days.
When we took our marriage vows, I was already well aware of the meaning of "in sickness and in health", as I had watched my mom stand by my dad's side as his body deteriorated from cancer. Tom's diagnosis is nowhere near comparable to cancer, especially not my dad's stage 4 cancer, but still, I am now living that vow. I sat with him daily in the hospital to keep him company and I can't imagine being anywhere else. I just wanted to be with him, talk to him, and be his advocate. I will continue to stand by him, and to stand by our family unit, no matter what. From the day we took our vows and every day since and every day forward.
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