When the Doctor has Bad News (Again)

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I was holding my daughter’s hand—again—reaching down to her as she sat in the exam chair in the surgeon’s office—again. Chris, my husband, was there too, as he always is.  And—again—the surgeon was not coming right back. Chris and I looked at each other.  What we did not need to say out loud was that we already knew the surgeon would have bad news. 

Each time the surgeon does not come right back, the news is bad. It had been so for a year and a half, and now, we told each other with our eyes, we knew what to expect. So we took turns holding Lucille’s hand, and we waited.

We know we aren’t the only family to sit in an exam room waiting for more bad news—though that isn’t what I was thinking while were sitting there. The truth is that even while were waiting, countless other families were sitting in their own limbo, waiting for doctors who shouldn’t have been taking so long.

I can’t say exactly what it’s like for everyone, but here is what it’s like for us.

Something Feels Wrong

Lucille was three months past her radical surgery, six months out of drug therapy, and two months into getting back to normal. Everything should have been fine.  But it wasn’t.  She started feeling pain in her jaw.  The pain was intense enough to need Motrin and ice packs, and it was in her mandible—her lower jaw bone—right where the tumor had grown.

We let it go for a few days, telling our daughter and ourselves that everything should be fine.  When we called her surgeon, he advised us to watch her for a few more days.  She had been sick; maybe her jaw was sore from throwing up, or from crushed nerves healing enough to feel again, or from adult teeth coming in.  After all, the pathology that came back after the surgery was perfect—no tumor cells anywhere. But after a few more days, he asked to see her—just to be on the safe side.

So Lucille had a CT scan as soon as we walked into the office. It was April again, and now we were waiting for the surgeon to look at a CT scan, just like we had one year ago, when the surgeon had come in and apologized for keeping us waiting before telling us the tumor had grown, and Lucille would need to start treatment with an oncologist.

Now, as the surgeon finally came back into the room, he said, “Sorry to keep you waiting.  I wanted to take my time looking at the CT.”

So he had bad news for us again.

I wanted to drop the f-bomb but didn’t, not with Lucille sitting in the chair.  In a minute, Lucille’s scan illuminated the screen.  We could see something there, in her jaw, in the middle of the newly-grown bone.

The surgeon went over the options: It could be nothing, just bone growing more densely than the bone around it. It could be bone infection. It could be tumor.  She needed a biopsy. And she needed it soon.

I’ve already written a post about the biopsy waiting game. Each day is an eternity. Other parents have been there.  First, you wait for the day of the biopsy, then you wait through the procedure, then you wait for the results. You Google it just to make sure you aren’t the only family who has waited this long for a biopsy. You recite the possibilities like prayers—dense bone, bone infection, tumor recurrence.

The Morning of the Biopsy

We pulled Lucille out of bed when the dawn light was still grey. She knew this routine; we all did. She brushed her teeth, and we left the house with Lucille still in her pajamas—pink plaid bottoms this time, paired with the pink 1984 Detroit Tigers tee shirt I got when I was her age.

Like her first biopsy fifteen months ago, this one was happening in the small operating room inside the surgeon’s office. Unlike the first one, we knew her surgeon well now, so he let us stay while he slipped the needle into Lucille’s hand to sedate her. Chris and I stood beside our daughter, holding her hands until her pupils dilated, and the surgeon told us what we already know. She was out, and we needed to leave the room.

I’d have stay if he would have let me. I’d always rather see what is happening to her. But parents aren’t allowed in operating rooms.

In the waiting room, we think things are taking too long. Each time the surgeon does not come right back…

“He must be doing more than the biopsy,” I said.

“I know,” Chris answered.  The surgeon had warned us that if he got inside her bone and saw what was clearly either tumor or infection, he’d widen the incision and remove all he could.

Chris and I have gotten into the habit of not touching each other in waiting rooms.  Having a critically ill child is hard on a marriage.  You forget you are the kind of people who like holding hands. You forget you are the kind of couple who can do anything with each other except hold your family together.

The wait continued, and we didn’t say much else.  After a time—who knew how long?—we looked at each other and spoke enough to agree that the news was definitely bad. And just then the surgeon’s assistant, still smocked, came to bring us to a consultation room.

When the surgeon came in, he wasn’t smiling. (After her radical surgery three months ago, his grin had been the first thing we noticed).

Now, he uttered some preemptive word, like “well.” But I beat him to the punch and said, “You had to do more than a biopsy.”

The surgeon began explaining. The bone looked great.  It killed him (this was the phrase he actually used) to put a hole in the beautiful new bone. But drill a hole he did. And he came to a hollow space.  And it was filled with what looked like mononucleated giant cells. The cells that, in Lucille’s case, make a central giant cell granuloma.

“It looks like tumor recurrence or multiple recurrences,” the surgeon said and went on to explain that it was possible the cells were infection, not tumor. Either way, the news would be bad.

Under the table, I reached for Chris’ hand. His fingers folded around mine.

The Bad News Comes

Knowing the news will be bad, either way, we wondered which we should hope for:  Bone infection or tumor. This time, the wait seemed longer than Lucille’s first two biopsies.  Though it ended up being the shortest by over a week.  Lucille was still recovering from the surgery when the news came in.

Lucille’s surgeon is a nice person, and Lucille is a special case, so the phone call lasted for nearly half an hour.  He told me she would have been more likely to lose her jaw if the cells had been a bone infection. He told me he removed the tumor during the surgery, but the surgery won’t be enough: Tumor cells were certainly still there. He assured me we caught the recurrence early. But still, Lucille would need more drug therapy.

Facing the Immediate Future

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Lucille bringing her new dog home from the pound. We hope pet ownership will help her face the tumor recurrence. 

In the days to follow we will face the complex web of consequences and decisions brought on by this re-diagnosis. We will talk about oncology options and a feeding tube. We will calculate weight loss. We will hand our daughter antibiotics and probiotics as her body fights a post-surgery infection. We will adopt a dog.  And through all of this, our brave girl and her brave face will absorb the news.

 

The tumor is back. The biopsy shows central giant cell granuloma tumor cells, a recurrence. Lucille is going back to pediatric oncology. Her beautiful, brave face will continue to fight.

The Biopsy Waiting Game

651E8626-4585-41A7-A26F-A2BE7AF66F1AFirst, you wait. As anyone who has become an oncology patient knows, the biopsy comes first. You have the biopsy—or your child has the biopsy—and then you spend your hours thinking not so much about what the pathologist is doing, as what the results will mean for your life.

When Lucille had her first biopsy, a year ago, we knew she had a solid tumor in her face. We were waiting to find out if the tumor was cancer or what it turned out to be, a central giant cell granuloma. I don’t remember much about what I was thinking that day. Our third child was four days old—I was exhausted and still leaking from everywhere. But I do remember wearing the baby in his sling, kissing Lucille before they sedated her, and thinking everything would be okay as long as it wasn’t cancer.

That day, everyone, even the surgeon, was still referring to Lucille’s tumor as a “mass,” and we had not realized how fundamentally a benign tumor could change our lives. We had not imagined how large the tumor would grow or how disfigured our daughter’s face would become. We did not know that some people with benign tumors still became oncology patients. We thought that if a tumor was benign, most of its effect would be benign, too.

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One year later, we got it. This time, as we waited for pathology results, what was on the line was the oncology: the need—or not—for more drug therapy. Lucille had spent eight months on a drug called denosumab, still experimental in its use for this kind of tumor, risky, but not chemo. If she needed more drug therapy now, chemotherapy was looming as one possibility.

This time, we weren’t waiting for a biopsy, exactly. This time, the surgeon had cut most of the bony tumor from Lucille’s chin and had sent every chunk to the pathologist. This time, everyone was hoping the drug therapy had turned the giant cell tumor tissue into bone tissue, at least around the parts that had been touching the tissue the surgeon had left behind to form her new jaw.

This pathology wait began with Lucille’s recovery from a radical surgery. Helping Lucille through the beginning of her recovery buoyed us through the first week of waiting. This time, I did think about what the pathologist was doing. So did Lucille’s surgeon, who told us at her five day follow-up and her eight day follow-up that it takes a long time to slice up so much bony tumor into readable sections.

So Lucille continued a difficult recovery, and we waited. And we waited. Another thing anyone who has waited for a biopsy—or any kind of pathology report—knows is that the rest of your life keeps going. The rest of your life doesn’t care what the pathologist is doing. The kids—including the one recovering from a radical surgery—still need to be fed. The important emails from work still need your response.  The fight you are having with your health insurance company still needs to be fought.

So we waited. My husband, Chris, and I went back to work. I won one skirmish with the insurance company. Lucille progressed from a liquid diet to soft foods. We prayed, and we hoped.  We tried not to get irritable with each other. The surgeon emailed the pathologist to check in. The surgeon promised he would call me as soon as he got word. I carried my phone to class and apologized to my students when I had to look to see who was calling.

Lucille read and colored, took a lot of selfies, and wrote a story on her Chromebook. Nicolas went to preschool. Wade teethed a lot. The kids and I went for walks and played a lot of snorffle-tickle-monster. Friends and strangers sent cards and meals and gifts and flowers. We read and ate and opened and appreciated. And we waited.

And then, like most of the other times in my life when I’ve been waiting for news, the news came at the exact moment I’d forgotten to think of it. I’d just gotten back from class, where I had forgotten to bring my phone. I sat down in my office, and heard my phone vibrating from inside my desk. It was Lucille’s surgeon.

He had just that instant gotten off the phone with the pathologist. I could tell from the sound of his voice that the news was good. I did not get up to close my office door. I sat and listened. The news was better than good. There were no giant cells anywhere, not anywhere at all. Not in the border tissue, not in the tissue deeper into the tumor. Not even in the small, snowman-shaped declivity everyone thought would probably still hold some tumor cells inside.

“Do we need a second pair of eyes?” I asked, wondering if another pathologist should give a second opinion. Funny how sometimes good news can be just as unbelievable as bad.

But an entire pathology team had studied her tumor and with special interest. (She was, after all, a very special case.) No, we did not need to get another opinion. We did not need to make another difficult drug therapy choice. We did not need to do anything but stop waiting.