The Things We Carried

I do a lot of thinking in the shower. Something about the pounding hot water, dim lighting, and steam makes everything feel a little otherworldly and opens the mental floodgates. It’s always interesting to see what comes out. Recently, I've crammed a lot of thoughts in there, and three main complaints have forced their way back out.

First, decision fatigue is very real.

Second, I’m a little sick of adulting, and apparently, I have a whole lot more of it on the horizon.

And third, I really wish we didn’t have to be our own best advocates.

That might sound like a sad little pity party, and you would be right. Part of the beauty of doing your most unfiltered thinking in the shower is that all those ugly, petty, slightly victimized thoughts can wash down the drain once they’ve had a chance to express themselves.

But if you’ve ever found yourself looking around for the more-adult adult in the room, only to realize there isn’t one, you probably know what I’m feeling right now. It’s been one of the most unnerving parts of turning thirty. For most of my life, I’ve seen adults, particularly my parents, as confident, decisive people who always knew exactly what to do and how to navigate difficult situations with grace and poise. I’ve been waiting to “arrive” at that level of adulthood. I’m slowly recognizing that we’ve reached what must be the epitome of adulthood (having a child and being thirty); there is no magical switch that flips somewhere along the way to turn a teenager into a grown-up.

We had a strong start with Jacob’s new endocrinologist, but that situation quickly became challenging. Her office is an hour away, which we initially thought would be manageable because we could complete blood work and other testing closer to us. We hadn’t anticipated how difficult communication would be.

We haven't been able to find a portal messaging system, telehealth seems outside their workflow, and Jacob's direct conversation with his doctor about his blood work was about 5 minutes long. Though brief, the conversation was reassuring. Everything looked really good, with a few slightly abnormal numbers that might ordinarily be attributed to his low vitamin D.

During his initial visit, she mentioned she wanted to order two tests in addition to the blood work he completed that day: a “parathyroid scan” and a 24-hour calcium test. Based on how the scan was described, we assumed she meant an ultrasound. No big deal. If she wanted a visualization and not just blood work, Jacob didn’t mind spending twenty minutes with some jelly on his neck.

Then the imaging center called to get it officially on the calendar, and it sounded a little more involved than we had anticipated. We did some googling and found that what was actually ordered might have been a nuclear medicine scan involving an injection of radioactive tracer, an initial set of images, and then several hours of waiting before another set. More importantly, everything we could find suggested this scan is generally used to locate an already-diagnosed parathyroid adenoma for surgical planning rather than to diagnose hyperparathyroidism in the first place.

That left us confused. If his blood work looked good and we were just establishing a thorough baseline, why were we doing a test typically used for surgical planning?

After several phone calls, we confirmed that the nuclear medicine scan was indeed what had been ordered. Jacob decided to go ahead anyway. Maybe MEN1 put him outside the typical use case we kept reading about.

I don’t know about you, but having a nurse walk into the room carrying a lead container holding what they are about to inject into your body is rather intimidating.

That was followed by instructions to stay away from pregnant women and small children for 24 hours. Oh, and maybe don’t go to the airport or drive through the Arsenal gate because you might set off the radiation detectors.

Cool.

This is one of those moments when I’m incredibly grateful we both have biochemistry degrees. In this strange world we now inhabit, having the confidence to ask questions, and at least some clue when we pull up blood work or medical journal articles, has become an invaluable gift.

I want to be very clear here: neither of us is a doctor. We haven't spoken directly with his doctor about why she ordered this scan, since we learned what it was, and the reputable medical information we found describes the test as safe. I am not offering medical advice or suggesting someone else should make the same decision we did. Jacob just realized he didn't understand why this test was necessary right now and, given everything else involved, felt it was worth asking before proceeding. Thankfully, the nurse administering the scan was incredibly gracious about his concerns and agreed a conversation with his doctor was probably in order. Jacob decided to reschedule until that could happen.

Then another phone call complicated things further. His doctor was out of town, but he spoke with her nurse, who gave him a very different explanation than we had heard before. This time, he was told they believed his blood work indicated an adenoma and that the scan would be used before referring him to a surgeon.

That stopped us both in our tracks.

Wait.

How did we get from everything looks great and these slightly abnormal numbers wouldn’t be concerning at all in someone without MEN1 to we think you have an adenoma and may be sending you to a surgeon?

We eventually tracked down the actual blood work in the hospital’s larger patient portal and started reviewing it ourselves. From our admittedly non-medical perspective, nothing seemed to warrant the urgency we suddenly felt we were hearing. We also wondered how some tests were performed and whether those conditions could have affected the results.

Suddenly I was back at the mental decision tree, with more unknowns than knowns, and questions no one can answer yet. The what-if manufacturing line went into overdrive, pumping out every possible scenario it could think of, rank-ordering each one’s plausibility, and trying to figure out how we could pursue them all simultaneously.

Maybe his doctor will explain everything, and this will make perfect sense. Maybe the labs need to be repeated. Maybe we need a second opinion. Maybe we should transfer his care entirely. Maybe we should shoot for the moon and see if a major MEN1 research center would take us. MD Anderson looks like a fantastic option.

Whether my husband agrees that any of these is a reasonable use of mental energy is, of course, an entirely different matter. On a completely different front, things with my fertility clinic have also gotten a little cloudy.

Recently, they asked me to provide contact information for a specialty pharmacy to use for some of my medications. Immediately, I thought, Wait a minute. I thought we were doing a natural cycle transfer. I had gone into this expecting little to no medication, so seeing two hormone injections and progesterone suppositories immediately raised questions. Had something changed? Was this simply their standard protocol? Had I misunderstood what “natural cycle” would actually mean? I didn’t know yet. That meant, alongside the fifteen different what-if scenarios I was working through for Jacob, I added about ten more of my own.

There’s a difficult balance here. I want to do everything reasonable to give this embryo the best possible chance of becoming our child, but I also don’t want unnecessary hormones that could make me feel worse than the normal discomfort of pregnancy.

 The entire reason we chose this clinic and jumped through the hoops required to get Jacob’s work benefit to make an exception allowing us to use it was that we were told a natural cycle transfer should be possible if my testing looked appropriate. No one has told me otherwise. So, in an entirely different arena, I find myself needing to ask questions and advocate for myself and my body too.

I can’t help but think some of this stems from the fact that both Jacob and I are currently odd ducks in the medical systems we’re navigating. His condition is rare, and my circumstances are unusual for a fertility clinic. Standard protocols don’t always fit either of us neatly. The difference is that mine should hopefully be a one-time experience.

Meanwhile, in the embryo adoption world, we finally ironed out the communication-agreement portion of our contract. Thank goodness Snowflakes already had language drafted, because trying to figure out how to legally specify how we wanted to interact with a family we don’t know yet, but who will hopefully become part of our family, was rather intimidating.

Thankfully, the wording Snowflakes provided felt surprisingly comfortable. We agreed to unrestricted written communication at least once a year to exchange updates and photos. Beyond that, we said we were open to other forms of communication if both families agreed. It felt like the balance we had been hoping for: enough room for the relationship to grow without forcing it to become something before any of us knows what that something might be.

We signed it the day it arrived. Now we’re waiting for the other family to approve it. It has been two days. Somehow, my brain has decided to add that to the pile as one more unknown I can’t do anything about. Is that fair? Absolutely not. Is my anxiety, which is already gone rogue, aware of that? Nope, not really.

Instead, I am trying to focus on some of the other fish we have to fry, including our toddler, who apparently decided this was an ideal week to begin refusing naps.

It’s another one of those moments when even asking people to pray feels difficult. We need so much context to explain what we’re asking them to pray for that I’m sometimes afraid I’ve lost them halfway through. Because so much of this is ongoing, part of me also wonders whether people eventually get tired of hearing about it.

I am ready to make normal adult decisions again. I want to work on plans for our bathroom remodel. I want to agonize over tile colors and cabinet hardware instead of communication agreements with our soon-to-be placing family or whether my husband should undergo a test that will make him radioactive for the rest of the day. We legitimately almost used that as our excuse for missing a birthday party.

“Sorry we can’t make it to your daughter’s birthday. My husband is radioactive and isn’t supposed to be around small children.”

I made more than one Spider-Man joke because sometimes the absurdity is more than I can handle. It was one of those laugh-to-keep-from-crying moments. Who would have thought we’d ever need contingency plans for my radioactive husband spending the day in quarantine? Although, given the town we live in, stranger things have probably been discussed.

Underneath all of that, I desperately want to finally conquer my brain enough that, when questions cannot be answered immediately, I can comfortably work on the next right thing, and only that, without jumping ahead into the multidimensional unknown. The problem is, life doesn’t work that way very often, and I’m not sure I was hardwired that way, either.

Which means right now, trusting God in uncertainty looks like a lot of external processing, a lot of attempts at praying, and a lot of trying to lay down my million-and-one potential scenarios and leave them there. Which means that when Jacob says he wants to wait and give his doctor the opportunity to explain her thinking, and then decide whether this test makes sense, I am listening.

I am still gathering information about potential alternatives, and we are discussing those options, but I’m also waiting for Jacob to have a real conversation with his endocrinologist when she returns, and another with CCI when his provider is available. He’s going to make those calls, and I trust that.

That gives us enough of a plan and enough forward progress to quiet some of the noise in my brain—and enough motivation for me to call the fertility clinic and explain exactly what I’m hoping for with my transfer protocol.

All of that is enough to give this family, whom we will hopefully be connected to for the rest of our lives, a few days to think about how they want to relate to us.

There is truly nothing else to be done tonight.

That’s the trust I’m asking God to grow in me: the ability to lay down unresolved things and leave them there until there's something practical to do about them.

So as I sit here in the dark writing this, I’m taking a few deep breaths and remembering that, for now, nothing has actually changed.

Jacob is not rapidly deteriorating. The goal for a transfer is still months away. I have time to figure out what these medications mean and whether they are necessary. This family has plenty of time to look at, and presumably pray over, this communication agreement.

We can breathe. We can sit. We can wait.

And for tonight, that can be more than enough.