My favorite authors are people who have words to describe things that I may have intuitively known, but didn’t have the words to bring to the surface. Sometimes, I wonder if I’ve always known these things, or if the words just seem so natural that it makes me feel like I’ve always known them.
That’s how I feel about life without Jeff: I wonder if I’ve always known life without him, or if grief tricks me into thinking that I feel like I’ve always known it. Sometimes, it’s difficult for me to remember what it was like before his diagnosis. Life. Marriage. Parenting. Laughing. Praying. All of it.
A year ago today, we were at our nephew’s first communion luncheon. Jeff was his godfather.
Jeff got a phone call. It was from the gastroenterologist who ordered Jeff’s CT and then his biopsy. The doctor told Jeff that he had liver cancer.
I didn’t know about this phone call. My version of the day is that I was worried about Jeff, but still in mom overdrive, trying to do the work of two parents and still care for Jeff. I don’t know what time he received the phone call. But the GI doctor followed up with an e-mail on MyChart at 1:26 p.m. She encouraged him to set an appointment with an oncologist in their medical practice.
At the party, Jeff told me he wasn’t feeling well. He was going home to rest. I think Randy drove him home. I stayed with the kids.
Later in the afternoon, I packed up the kids. We were walking out to the car, and I turned to Randy and said – and I vividly remember this – “Jeff’s going to be okay, right?”
“Of course he is,” Randy said.
I’ve thought about that moment a lot. Did I know? Did the foreshadowing over years finally play out? Was my sneaking premonition laid bare?
I drove home and mostly did bedtime by myself. Jeff tried to help where he could. I don’t remember what Jeff and I did that night, but he still didn’t tell me about the phone call.
That night, I woke up and Jeff wasn’t in bed. This never happened. I walked downstairs. No Jeff. I walked in the basement, and he was watching How I Met Your Mother and laying on our sectional couch.
“Are you okay?” I asked.
“Yeah. Just couldn’t sleep.”
“Okay. Love you. See you in the morning.”
I wanted to protest, to encourage him to come back to bed. But after years of marriage, I knew that when Jeff needed his space, that I should respect that. So, I went back to bed.
I think he eventually came back to bed. I don’t entirely remember. The next day was Sunday. But I don’t remember much about that day, either. I have one vivid memory from that day, April 29.
We had put the kids to bed. I was doing school work. Jeff was working. He walked downstairs into the family room.
“I think you’re looking less yellow,” I said. “You look better.”
“No. I don’t think so,” said Jeff.
“Are you sure?”
“Yeah. It’s just the lighting.”
Right at that moment, Jeff knew he had cancer. I’ve thought many times about how ridiculous I must have sounded, and how he must have so desperately wanted me to be right.
Jeff told me the next day. On April 30th.
Leading up to Justin’s first communion, Jeff had continued to get more and more yellow. After the CT scan revealed the mass, Jeff had a liver biopsy on April 26. Randy took him. I went to school.
To obtain a liver biopsy, the most common method is a percutaneous biopsy, which means they insert a needle in your abdomen. Most of the time, they guide the needle placement with ultrasound. But, as it also happened when Jeff was hospitalized, the mass didn’t show up on the ultrasound. Here are some notes from the biopsy summary:
“Patient was initially placed supine on the ultrasound examination table. A preliminary ultrasound of the patient’s liver did not definitively identify the mass. The decision was made to transfer the patient to CT. Patient was placed supine on the CT examination table. A preliminary CT of the patient’s liver demonstrates a hypodense mass involving the right hepatic lobe. An appropriate area was marked on the skin then prepped and draped in sterile fashion.
Using CT guidance, a 17 gauge guide needle was advanced into the right hepatic lobe mass. Through this, 5 samples were obtained using an 18-gauge sidecutting core needle biopsy device. Specimens were collected and delivered to the pathology lab.”
But the part that gets me is the last line: “There were no immediate complications and the patient tolerated the procedure well.”
Maybe in medical terms, Jeff tolerated it well because he wasn’t hemorrhaging. But in lay terms, I would not say that Jeff “tolerated the procedure well.”
MyChart times his biopsy at 2:07 p.m. Jeff later told me that they couldn’t find the mass, so they kept taking him in and out of the CT scanner. In and out. In and out. Once they finally took the biopsy, he went to recovery, where he was in intense pain. He lay there for several hours while Randy waited. Jeff couldn’t bear to see or talk to anyone, and he lay there listening to the nurses talk about their lives, and he seethed with annoyance. He would later tell me how unprofessional their conversations were, and how he felt a complete disregard of decorum and patience.
Also later, we would find out that a percutaneous biopsy might have exempted Jeff from certain treatments. On the Mayo Clinic page for cholangiocarcinoma, it says:
“If the suspicious area is located very near where the bile duct joins the small intestine, your doctor may obtain a biopsy sample during ERCP. If the suspicious area is within or near the liver, your doctor may obtain a tissue sample by inserting a long needle through your skin to the affected area (fine-needle aspiration). He or she may use an imaging test, such as an endoscopic ultrasound or CT scan, to guide the needle to the precise area.
How your doctor collects a biopsy sample may influence which treatment options are available to you later. For example, if your bile duct cancer is biopsied by fine-needle aspiration, you will become ineligible for liver transplantation. Don’t hesitate to ask about your doctor’s experience with diagnosing cholangiocarcinoma. If you have any doubts, get a second opinion.”
We, of course, didn’t know to ask these questions. The doctor says to get a biopsy, you get a biopsy. This is something we absolutely should have been made aware of beforehand, and something Jeff and I would later write in a review of this medical practice.
I spent a lot of time on that review, and part of what I wrote went something like this, “It is your moral responsibility to make patients aware when the demands of a particular case reach the edge of or extend beyond your expertise. And it is your professional responsibility to know what those boundaries are. In my husband’s case, three different doctors from three different specialties did not do their due diligence, which led to misdiagnosis, delayed treatment, and anxiety.”
The tricky thing about being a doctor – I think… I’m not one – is that you must have the hubris to think, “I’m the right person to do this!” and the concurrent humility to say, “Uh, yeah… this is beyond me.” I would imagine this is especially true in tough specialties like oncology.
So there we were: Jeff had been hospitalized. He had gone for follow-up bloodwork. He had seen his PCP who referred him to gastroenterology who ordered a CT and then a biopsy. The biopsy was awful; Jeff and I stayed home from work the following day; and the next day – BOOM – Jeff gets a phone call in the middle of a first communion luncheon telling him he had “poorly differentiated invasive adenocarcinoma with extensive necrosis.”
Jeff was diagnosed three days after Kate’s birthday, and died three days before mine. All of that was a year ago.
And yet – three years ago yesterday – we came home from the hospital with our new little girl. We picked Jake up from daycare on the way home, because I wanted our whole family to be together. I wanted us to be under one roof.
We made it through the first night with Barb’s help, recording each diaper change and feeding on a steno pad, just as we had done with Jake. We congratulated ourselves in the morning and prepared to do it another day.
Exactly three years ago today, we were sitting in this very family room watching TV. Jeff was wearing his gray, long-sleeved Iowa State t-shirt. Kate was swaddled and still wearing her little white beanie from the hospital. And sitting on our couch looking over at Jeff, I was so touched to see him holding our daughter. I loved that we had a little boy and a little girl. I loved that he was their dad, and I was their mom, and we were a family. I knew that the next months would be difficult, but I also knew I wouldn’t want to do it with anyone other than Jeff. So I took a picture.
And now, three years later, I wonder if I can bring to the surface what that life was like. Or – just as the author can make a reader feel like she’s always known something – if grief has performed its menacing and merciful act of sometimes making me feel like this is the only life I’ve ever known.