Appointments and Waiting Rooms

On August 4th, Jacob had his first endocrinology appointment. It had been on the calendar for seven months, which somehow made it feel both long-awaited and strangely unimportant.

A few weeks earlier, Jacob had undergone a follow-up MRI through Clearview Cancer Institute to monitor a pineal cyst in his brain that had been discovered back in January. Thankfully, it wasn't nearly as concerning as it sounds. We had been told from the beginning that pineal cysts are common incidental findings on brain MRIs, often discovered after things like concussions. In Jacob's case, because the pineal gland is part of the endocrine system, his doctors wanted to monitor it more closely.

The appointment went well. Two days later, we received the results: no changes. Better yet, they felt comfortable moving him from imaging every six months to once a year. We both breathed a sigh of relief. There is something deeply comforting about hearing that the thing everyone told you wasn't concerning is, in fact, behaving exactly as expected.

Jacob's care at Clearview Cancer Institute has been nothing short of wonderful, but even writing that name is difficult. It is still strange to think that this is somewhere we go now. Every time we walk through the doors, I feel as though we have wandered into a place where we do not quite belong. This is a place for really sick people. Jacob is not one of them. Sometimes it feels like we've drifted into an alternate reality where everyone else is wondering why we're there, while we sit there and wonder the same thing.

Regardless, the team at Clearview has taken excellent care of him. As of today, we have every reason to believe there is nothing immediately concerning. When we had a brief scare a few months ago, one of my close friends, who happens to be a nurse practitioner for a local gastroenterologist, helped get Jacob seen the next day. She assessed his symptoms, ran additional labs, and put our fears to rest.

Clearview's role is primarily to coordinate his care among various specialists, manage his imaging and blood work, and, should we ever need one, provide an oncologist. Gastroenterology addresses symptoms and tumors that may arise in the gastrointestinal tract, particularly around the pancreas and duodenum. These tend to be the most clinically concerning, so much of the MEN1 literature recommends having a specialist in this area. But because MEN1 is first and foremost a condition of the endocrine system, endocrinology is another essential piece of the puzzle. Still, with the excellent care Jacob had already received, I felt we had covered most of our bases.

I was not prepared for how much the endocrinologist appointment would affect me. 

I picked Jacob up from work, and on the drive we mostly talked about his day and my morning with our son. When we arrived at the hospital where the new doctor practiced, we both noticed that the building next door was another Clearview branch. That felt a little surreal. Even more so when we reached the hallway and saw another Clearview office just a few doors down.

Seeing that name felt both strangely comforting and a little unsettling when we were there for something else. I don't know how to describe it other than a cross between it's a small world and the uneasy feeling of being followed.

We left Clearview in the hallway and entered the endocrinologist's office. They checked us in quickly. Less than five minutes later, they called Jacob back, and the doctor joined us soon afterward.

Overall, it was a very good appointment. She was kind, knowledgeable, and thorough. We both felt reassured that she would stay on top of his care. Her priorities aligned with ours: early detection is our best defense, and the inconvenience of rigorous testing is far better than the alternative. We left knowing Jacob was in capable hands. And yet, for the rest of the day, something in me felt off.

My patience was shorter. I carried an underlying restlessness I couldn't explain. My mind felt crowded, but none of the thoughts were concrete enough to say out loud. Reassurance didn't help. That night, I tried to write, hoping that the words might help me understand what I was feeling. All I could do was describe what had happened. The moment I tried to move from the events into the emotions, I hit a brick wall. Eventually, I admitted defeat and went to bed, hoping a new day might bring more clarity.

It did, though sorting through everything I had felt in that room was still an arduous process. Some of it was obvious fear. It is difficult to sit in a doctor's office while your spouse is discussed as a ticking time bomb that may or may not go off someday.

One of the hardest things about living with MEN1, particularly for me, is the constant unknown. Statistics tell us tumors are likely to form at some point. What we do not know is when, how many there will be, what kind they will be, what symptoms they may cause, what treatment they will require, or how any of it may affect our lives in the moment or over time. My counselor said it best in our session two days later. "The only certainty you have is one you desperately wish you didn't." Most of the time, I refuse to even think of it as certain. This is where my “winner” mindset comes in again. There is still a part of me, sometimes rather small, that believes Jacob will beat the odds. I don’t care if there is a 99% chance that a tumor will form by the time he’s 50. I refuse to let go of that 1% chance. But feeling the weight of 99%, which I absolutely do not want to hold onto, is one of the hardest things I have ever had to learn to live with.

I try to remind myself that we are in the deeply fortunate position of knowing about Jacob's condition before he has clinical symptoms. For now, we can remain in what his new doctor called a state of aggressive surveillance rather than reactive treatment. That is truly a gift. Then she prescribed him a glucose monitor, just in case. It is such a small device, but something about bringing it into our home felt like a concession. Like admitting that everything may not always be okay. Like acknowledging that something could change suddenly and we need to be ready.

Another part of the appointment was even harder. The doctor confirmed what we already knew: Jacob should have been tested as soon as his brother was diagnosed.

Hearing a medical professional state plainly how wrong the earlier guidance had been given reignited anger I have worked hard to manage. Sitting through that conversation, knowing our son's first endocrinology appointment was only a few weeks away, made it even worse.

What I can now recognize as grief, injustice, and anger boiled over the moment the doctor left the room. I cried before I fully understood why. The grief still comes in waves.

Most of the time, it is hard to believe this is our reality at all. Jacob and our son are both, in the doctor's words, "impressively healthy." Neither of them shows any visible signs of carrying this gene. The strange questions about symptoms, the testing recommendations, and the repeated reminders of what we are watching for drag the diagnosis out of the periphery and place it directly in front of us, forcing us to experience the grief all over again.

I hate it. I hate crying over it. I hate being pulled back into sadness, anger, and fear that, most days, I can rise above or perhaps simply ignore. I'm still not sure which.

I want to be solid ground for my husband and son. I hate that while I sat in a doctor's office trying to pull myself together, my husband, the one sitting on the examination table, comforted me. Why couldn't I be the steady one when his life was being discussed? I struggle deeply with the sense of failure that comes whenever I fall apart.

I also hate that there is nothing I can do to fix any of it. My role is to walk beside them, support them as best I can, attend appointments, become another set of ears when the details are too numerous to hold alone, listen when things get heavy, and pray. For so many reasons, that doesn't feel like enough.

Maybe that's because so much of my identity has always been wrapped up in solving problems. My instinct is to gather information, make a plan, and move toward a solution. This isn't a problem I can solve. It's only one I can walk through. I'll also confess that prayer can be difficult. I want God to cure them. I want Him to remove the mutation, eliminate the risk, and make it all disappear. That is not the answer we have received. At least with medicine as it exists today, that kind of healing would require a true and undeniable miracle.

The next prayer would be for the strength to walk beside them well. But even that prayer requires me to acknowledge how fragile and inadequate I feel. There is rarely a convenient time, especially with a two-year-old running through the house, to explore the full depth of that inadequacy or to have the kind of cry that often accompanies it.

When I reach the end of myself, what I find is helplessness. I feel helpless to provide real solutions for my family. Helpless to resolve the anger I still carry toward those who gave us inaccurate information when Jacob's brother was diagnosed. Helpless to know exactly how to introduce this reality to our son so that he can grow up understanding it without fear, shock, or a distorted view of himself. I still don't know what to do with that helplessness.

This is one of the moments when I am particularly grateful for the book of Job. I hope that doesn't sound dramatic or like an attempt to spiritually bypass what we are experiencing. I just find it oddly reassuring that an entire book of the Bible makes room for someone crying out to God from within a genuinely unfair experience of suffering without receiving a neat explanation for why it happened. Job reminds me that I am allowed to be angry, heartbroken, confused, even deeply wronged, and that God can handle all of it

There is also a strange peace in knowing that we may never understand, on this side of eternity, why some suffering occurs. God never explains the suffering. He never untangles every injustice. He never answers Job's why. And somewhere in that, I know it’s not my lack of faith that keeps my why from being answered. Instead, He gives Job a picture of who He is. In my better moments, I can recognize that this may actually be the better answer.

I've also have had to learn to be okay with hope coming later. One of the most important things counseling has taught me is that hope cannot easily be layered on top of unprocessed pain. At least for me, the grief has to come out before anything more positive can make its way back in. That doesn't mean the pain disappears or that everything suddenly feels okay. It means my heart can only hold so much at one time. If I refuse to acknowledge the hurt, I often spend enormous mental energy avoiding all of my feelings, not just pain, and miss the good God is placing in front of me.

After a good cry, a couple of conversations with people who love me, a run, and some time to reflect, I began to notice those gifts again.

I realized we now have three different physicians who have each looked us in the eye and told us the same thing: "Don't be a stranger. There is no such thing as a dumb question. No concern is too small." They are just as committed as we are to helping Jacob live a long, healthy, ordinary life. On one hand, I hate that we even need three specialists. On the other hand, once I accept that reality, I can begin to recognize what an incredible blessing it is that they exist.

Yesterday the glucose monitor felt like admitting defeat. Today, it tells me that if something changes, we'll know and catch it early. It also reminds me we already have people who know how to use one of the darn things walking beside us, willing to help. That isn't the future I would have chosen, but it is a gift.

Then my thoughts drifted somewhere entirely different, to our placing family and the incredible privilege of walking this unexpected road with them, to the children's book slowly taking shape, and to this blog.

I don't take it lightly that I get to tell this story.

If sharing it gives someone else permission to admit they're angry, heartbroken, scared, or simply exhausted, then it will have been worth writing.

If it reminds someone that faith and lament can coexist in the same prayer, it will have been worth writing.

And if, after sitting honestly with those emotions, they notice hope slowly returning, then maybe this difficult road won't just shape our family. Maybe it will also become part of someone else's healing.