And Then a Neurologic Emergency Upended Everything

Trying to disrupt a disaster before it becomes more disastrous

Turns out I’m having major spinal surgery on Tuesday.

This was not the next update I’d planned nor one I’d ever wanted to write. In fact, I already had two other posts in various states of draft nearly ready to go, but I didn’t manage to post either of them before leaving on our annual extended family beach trip.

Let’s back up a bit.

We had a beautiful time with family at our special and beloved beach (Santa Rosa Beach, on 30-A in Florida, part of the glorious Emerald Coast).

Parents are now officially outnumbered by children, though my own children would hasten to point out that they are now adults, not children. By my math, we now have 8 adults and 9 kids (ages 5 months to 18 years). By theirs, we have 10 adults and 7 kids (ages 5 months to 16 years). Either way you slice it, that’s a lot of Dukes - and a lot of fun.

For me, the goodness of it all was unfortunately overshadowed by a lot of medical issues - worsening discomfort and pain, plus worry over both. In particular, I was dealing with a lot of left shoulder pain and intensifying back pain; the back pain in particular was keeping me awake at night.

I’ve been having - and reporting - concerns related to the back pain as well as to new and intensifying ribcage pain since mid-June, and I’ve been requesting an MRI since then as well. The ribcage pain has been similar to what I had in fall 2018, when the cancer metastasized to my T5 vertebra and fractured it. For various reasons, an MRI was not what happened.

At my July 6 appointment with my oncologist to start my new clinical trial, I discussed my worsening back and ribcage pain, and my concerns about this. I reminded my oncologist of a relevant piece of my mother’s history - she had malignant melanoma that metastasized to her T5, shattered it, and irreversibly compressed her spinal cord, causing complete paralysis from the T5 down.

Side note: until last year, I always thought my mom’s spinal metastasis and fracture was at T6, which is what my dad indicated in his book about her (and their) experience. Last summer, however, when I was cleaning out their estate, I found some of her medical records and they are very clear: the metastasis and fracture were actually at T5, like mine.

My mother lived 18 more years with stage 4 melanoma, a practically unheard of outcome at the time (and when she died in September 2015, it was not from melanoma). I would like to be an outlier like her in terms of survival, but I’d prefer not to do so as a paraplegic.

So at my July 6 appointment, I asked again for a spinal MRI. My doctor did not seem to share my sense of urgency or concern - the hope was that the trial drug would soon be working and would address the pain I was having - but she understood my anxiety and agreed for me to have the MRI if it would make me feel better.

By that point, however, I was unable to get the MRI scheduled before our trip, so I got it scheduled for the day after our return. The MRI was this past Monday, by which point my back pain had become so terrible that there were times I could barely speak.

The disaster I saw coming yet was seemingly powerless to prevent

On Wednesday, I was supposed to start the second cycle of the trial drug. The first cycle went really well - no discernible side effects whatsoever, and my blood counts all looked fabulous! My liver values were all normal, too, which to me was a hopeful sign that the drug was working well on the disease there. I’ve had other reasons to think the drug was working well, based on symptomatic relief. But the big concern by Wednesday was the excruciating back pain and what to do about it.

Some day I will tell you about the uselessness for a person like me of the Visual Analog Scale (VAS) for pain (you know, on a scale of 1 to 10, rate your pain), and about how I am similarly undermined by my generally energetic, upbeat personality and my unconscious, unplanned, unintentional tendency to appear completely fine when I am actually not fine at all. But on Wednesday, my pain was evident to anyone who knew me at all (like my PA), despite the VAS I’d reported to the tech (a 5, y’all).

The MRI results had still not landed, for me or for my sarcoma team. But the PA could tell how dire my situation was and was concerned enough to leave to go consult with my oncologist about what to do. My oncologist read the MRI scans herself, consulted with two spine experts (a radiation oncologist and a neurosurgeon) and then came back to give me the upshot.

The metastasis at the T5 is back, yes, but not in the bone the way it was before. It is now in the epidural space between the vertebra and the spinal cord. It is, in fact, compressing my spinal cord. And the optimal treatment for this is spinal surgery followed a couple of weeks later by radiation.

That whooshing sound you may be hearing now is my brain exploding. Or possibly my heart. Or maybe the bomb that went off in Paul’s brain and heart at the same time. It is the combined sound of fear, grief, and absolute white-hot fury.

I could and would say more, so much more, about my fury, but I am trying hard to reel this mammoth story in, believe it or not.

The good news in the midst of disaster

My oncologist told me that the neurosurgeon she’d consulted with had graciously agreed to take on my case, would have a video consult with me on Friday (yesterday) and would do the surgery himself on Tuesday. The neurosurgeon’s name is Nicholas Szerlip. I had a consult with him back in November 2018, after my original T5 metastasis and repair, and I absolutely adored him.

After she told me I’d be having spinal surgery, there is nothing better she could have said next than “Nicholas Szerlip.”

Even before I met him in 2018, I knew he was brilliant, innovative, and supremely talented and capable. He and a radiation oncologist founded a multidisciplinary spine oncology clinic at Michigan Medicine, and published a guide detailing the management of spinal metastases in the ever-changing landscape of spinal oncology (ever-changing because patients with metastatic cancer are living longer than they once did, and many of those cancers will ultimately go to bone). You can read about him and about the spine oncology clinic in this great article, which was published nine months before I met him.

I also knew from his bio before I met him that he went into this subspecialty after losing his mom to metastatic cancer. So in addition to knowing he was brilliant, innovative, talented, and capable, I expected him to be compassionate and maybe even empathetic, which he was.

What I did not expect was the seeming lack of ego that came barreling through the door that day, energetically sticking out a hand to shake mine, and announcing, “Hi! I’m Nick.”

Nick? Did this neurosurgeon just introduce himself to me by his first name? Yes, yes he did.

There’s good reason to expect a surgeon to have a big ego, and there’s good reason for them to have one. And there’s especially good reason to expect a neurosurgeon to have a big ego, and especially good reason for them to have one. When a neurosurgeon instead shows up first with humanity and humility? It feels like a revelation. It feels like a revolution. It feels like a real commitment to partnership with a patient.

When I learned on Wednesday that Dr. Nicholas “Hi, I’m Nick” Szerlip would be the neurosurgeon doing my surgery on Tuesday, it was the best news I could’ve gotten after getting the bad news I’d been fearing.

My consult with Dr. Szerlip

Thanks to the unending ways things can go not-quite-right in a large hospital system, I did not get scheduled on Thursday for a video consult on Friday, nor did I have a video consult at all.

But Dr. Szerlip called me himself first thing yesterday morning, and we spoke at length by phone. I felt so much better about everything because of this conversation, even though the surgery itself is actually going to be a lot more complex than I had envisioned or hoped.

First, he told me I have a “moderate-to-severe cord compression” - YIKES.

Then, he told me what he’s going to do about it. He will be going in and removing the back, sides, and front of the T5 (so, uh, the whole thing, it sounds like) to decompress from the spinal cord, resect the tumor, and make room for the radiation that will need to happen a couple of weeks later.

After taking me apart, he will then put met back together again with a multilevel spinal fusion - another yikes. The fusion will go from T3 to T8. It would’ve stopped at T7, but because I have cement in that vertebra (from a 2018 vertebroplasty), that vertebra is not secure enough to anchor the fusion, so T8 it is.

The surgery is first thing Tuesday morning (first surgery of the day is always a good thing, in my estimation), and should last 2-5 hours.

I asked him what this surgery was called, since it was clearly not the simple laminectomy I’d hoped it might be. He said it doesn’t really have a name but he calls it a stealth transpedicular decompression and resection of epidural tumor with spinal fusion.

He does about one of these surgeries per week, so the fact that it has no name other than his wild made-up one doesn’t faze me.

Of course I’d be lying if I said I wasn’t scared. I’m scared. I’ve never done anything like this, but my supervised ministry experience as a hospital chaplaincy intern on the neurosurgical unit of an Atlanta hospital my first year of seminary left me with one enduring impression: I hope I never ever ever ever have to have spinal surgery.

But on Tuesday, I’m having spinal surgery.

And then what?

We were supposed to be starting a staycation on Wednesday, with plans to spend a last precious few days at home with our kids before dropping Rob off to start college the next week. Instead, I expect to be in the hospital for 3-4 days after surgery.

The good news is that, according to Dr. Szerlip, after I’m released from the hospital, there’s no reason I won’t be able to go to South Carolina for Rob’s move-in!!

He says the only difference between that trip and the one I just took is that I should be in a lot less pain for that one. Sounds great to me! Of course I won’t be doing any of the actual moving of boxes, etc., but I already wasn’t planning to do any of that. I just want to be able to make the trip with Paul and the boys, be there as a kind of field marshal as everything gets set up, go to the family orientation, attend a legacy luncheon as a family, be there for and with my boy as he makes this major life transition, and then say our goodbyes. It’s a huge relief to know that, if all goes to plan on Tuesday, I will get to do exactly that.

Radiation will be done after I return from that, probably a couple of weeks after surgery, by one of the radiation oncologist colleagues who co-leads the spine oncology clinic, 3 treatments of targeted treatment.

I have to remain off systemic treatment for all of this, which is worrying, of course, especially since we don’t know yet what will happen next in terms of systemic treatment. I’m on pause with the clinical trial for now and it remains to be seen whether or not I’ll be able to resume it.

One last word from Dr. Szerlip

At the end of the conversation, I told Dr. Szerlip I'd had a consult with him in November 2018 after the original T5 metastasis (I knew it was in my record but I haven’t seen him since then and I would not expect him to retain that information). I told him what a great consult that had been for me, and how, because of it, I was glad and relieved when my oncologist told me that he would be the one taking my case.

Then I told him (as I had in 2018) of my mom's history with T5 metastasis that led to complete paralysis from there down, for 18 more years. I told him what I already told you above - I would like to be an outlier like she was in terms of survival, but I'd rather not do so as a paraplegic. He understood - he affirmed how good it was that she survived so long, while expressing empathy for how awful it was that she had to live with that level of neurologic compromise for all those years.

And then he offered this crucial piece of information - he said that, given my mom's history, they should've been following me much more closely since my original T5 metastasis, and that I should've been receiving spine MRIs every few months since then. He said if that had happened, they could have caught this when it could still have been treated with just radiation as opposed to needing surgery first. 

This certainly validated for me that my concern about getting a timely spinal MRI was more than mere anxiety. It was maddening too, of course, to have validation of what I already knew "in my bones," so to speak - that things should not have gotten to this point before imaging and intervention. But ultimately, it's reassuring for going forward. Assuming all goes well on Tuesday and beyond, I expect to remain in the care of the spine oncology clinic (in addition to the sarcoma clinic), and I expect my spine to be much more closely monitored going forward.

Towards Tuesday

So now I’m doing all the things a person apparently does before having major surgery and a planned hospitalization. I realized last night that, apart from my C-section 18 years ago, I’ve never had a planned hospitalization (actually, even that wasn’t fully planned, since I had an emergency C-section the day before my scheduled C-section). I’ve had two other hospitalizations since then, both in 2018 and both of them emergencies, and nothing (thankfully) since.

Turns out, when you know you’re going to be hospitalized, you do all sorts of things like surgical pre-op consults and the printing/signing/notarizing of legal documents, and the purchasing and packing for the stay and the COVID test the day before surgery (which, if positive, will mean postponing surgery for two weeks, no matter how urgent). And you might also spend a lot of time lying awake due to high dose steroids and also hoping and praying your spinal cord is not completely breached before it can be decompressed.

My current plan is to be in church tomorrow morning leading worship. I really want to be there, and Dr. Szerlip said there are no restrictions on what I can do between now and surgery, as long as I let pain be my guide. Unfortunately, the pain has been getting worse.

But Tuesday is coming. And as scared as I am of having major spinal surgery, I am far more scared of the neurologic emergency with which I’ve been living. And that’s what this is, a neurologic emergency, now on the verge of being stopped before irreversible neurologic compromise. I’m so glad. So glad. Way more glad than scared.

As always, I appreciate any and all love, support, prayers, warm thoughts, and positive intentions beamed my way, or towards the universe, or towards the God above and beyond and beneath it all. And you don’t have to believe in God, the universe, or even in me for it to make a difference. Atheist, agnostic, religious or spiritual of any type or none, if you are holding me in warm, positive, intentional regard, it matters, and I appreciate it. I rely on it all, and I need it all now as much as ever. Thank you, thank you, for all the ways you hold me up and carry me forward.

Casually walking along the beach with a moderate-to-severe spinal cord compression and a smile, as one does

I can’t believe I spent a week at the beach in a state of neurologic emergency. I’m so glad I made it safely, albeit painfully, home.

Here’s hoping for more happy beachy times with fam in the future