Scar Tissue

I still have a hole in my head. It’s not the same one but it’s still a problem. The infection is finding the path of least resistance and this new hole is it and the old wound has closed for now.

In the past year and change, I’ve had two surgeries on my head to address the bone infection issue (the official term is osteomyelitis, which we have been told is incurable), I began a new career as a high school math teacher, suffered from a seizure during this spring break, and undergone all sorts of antibiotic prescriptions and infusions in an attempt to get this wound to heal.

I last wrote when I was undergoing Hyperberic Oxygen therapy (referred to as HBO, that was me sitting in a tube of 100% oxygen for ninety minutes a day for thirty days) and it did not help my situation. Even after surgery and concluding the oxygen therapy, the wound continued to remain open. The aftermath of the surgery was extremely painful. I still kept my long-ish hair and it felt like I was continually trying to wash away a patch of grease whenever I would wash my hair. The wound care nurse suggested I try using Dawn dishwashing soap as a shampoo. After seeing wound care and the plastic surgeon again they recommended me for another surgery to entirely remove the bone flap so that bacteria would not be present at all and no infection would be allow to remain. The side effect would be that my head would have a noticeable divot in the right side where the skull flab would be removed.

I was going through all of this while entering a professional to teacher program called GATE (Greenville Alternative Teacher Education). It’s a three year program that requires application and acceptance before applying to jobs at schools. I had begun the application and interview process in early January, substitute teaching is highly encouraged before beginning the program. Another friend had clued me in that substitute teaching is also a good way for you to “interview” schools, even if you’re only there in a limited capacity you get to see a lot of how things are handled. Part of the GATE program requires you to prove proficiency in your area of expertise. I had the option of Math or Science due to my engineering degree and math degree, I choose math. To prove your proficiency you have to take a Praxis subject-area specific exam. I starting studying in January while in “tube time,” and continued through March. I took the Praxis exam (which is a $120 registration fee) on March 10th, 2023, my last day of “tube time.” Since it’s a computer exam, you receive your scores immediately after taking the test unless there is some sort of technical error or procedural issue that requires more scrutiny. I took my 3 hour / 60 question math test and learned that I did not earn a passing score.  

Even though there was much confusion about what even is a “passing score” I knew that I would have to take it all again, hopefully without undergoing intense would care treatments and surgeries at the same time. Time would disappointment me on that front.

It was difficult to deal with not passing the Praxis and a failed surgery / intense wound care therapy at the same time, also while working as a substitute (getting back to work for the first time in nine months) and interviewing for a future math teacher position.  I managed to get a couple of calls backs from applications and a couple of interviews before the next skull flap surgery.  One of those interviews (which seemed like the quickest and most perfunctory) offered me a position as a math teacher at their high school (shout out to J.L. Mann Academy!).

Still continuing to meet with wound care and plastic surgery (this doctor does both cosmetic and reconstructive plastic surgery), I continued to work as a sub to make some money and usually only accepted desirable opportunities or if other teachers nicely requested me. (My favorite was an orchestra class that already had a student-teacher conducting. I was just another-responsible-adult-in-the-room-gig but I got to enjoy nice live music all day and get paid for it.) I knew an upcoming surgery was going to be scheduled but I didn’t know when. It came as surprise at the end of one week. It would be in early May.  I cancelled some of my substituting commitments because I knew the surgery would require at least a week of recovery.  I got a buzz cut for my hair and said good bye to long hair for a while. At least all my interviews were done.

It was another “out-patent” surgery. It sounds light, but it isn’t. I was still checking into the same pre-op rooms as before, still put completely under general anesthesia, still had to spend time in post-op, but was sent home after the surgery (as I learned later, this was not good.) This surgery seemed to take. I also learned that the surgeon had managed to save the bone flap and reinsert it so I would not have a divot on the side of my head. This all sounded good.

It was much easier to deal with a buzzed head during post-op than my long hair. I could see the wound was closed but I did have a spot of irritation that by all appearances looked like an obnoxious zit but dermatology said was a burst cyst (after biopsy), more on this later. I had a combination of stitches and staples. By this point my skin is getting so tight from being stretched out it’s becoming thinner and harder to close for these surgeries. And due to that tightening, the pain from this surgery was on another level. Opening my mouth to eat food was extremely painful. Chewing was painful. Anything that stretches or pulls on the muscles or caused tension in my face meant extreme pain. I did take the prescribed painkillers this time. I was done with work. Nothing to do until summer stuff so I sat and recovered by watching movies in a sort of stupor induced by the pain meds. No real limitations this time, I was allowed to drive (when not on pain meds) and shower / shave normally.

The rest of the summer I spend in a normal-mode with the kids, except I did not get in the pool at all during the summer. I drove the kids to Tampa and they went to church camp, Cedarkirk. Will went to overnight camp for the first time and handled it like a champ. I filled time with studying for the Praxis exam I didn’t pass and watching Star Trek reruns (I find Star Trek very calming). Thankfully, the doctor visits during the summer were few and far between. Some routine cancer check ups and tending to stitches and staples. July started teacher training with two weeks of in-person training sessions for this program. I would usually spend evenings with the kids by the pool reading about effective classroom management.  The exam was in the back of my mind but I also realize one of the best ways to study for it would be by teaching it (I would be proven right in this revelation), so I mainly focused on becoming an effective teacher. Oh, we didn’t have a kitchen because it flooded but this isn’t a home improvement blog. It would be fixed in time for Christmas.

On the first day of school I remember nervously getting ready. I remember distinctly that some water had pooled up in that burst cyst area on my forehead. I used too much forced to wipe it dry with my towel and a small cut formed. I panicked a little bit but kept it all to myself. I would monitor the small wound for weeks. At the moments there was hardly any blood and it wasn’t noticeable from a distance.  We got school pictures of the kids and one school picture of me “First day of teaching high school.”

Teaching high school math is an adventure but I have been blessed with great colleagues who are very knowledgeable and good friends. I got through the Fall semester pretty smoothly. I even took my Praxis exam again in the fall, I opted for an online exam but it went disastrously even though I felt I was doing well on the problems. The internet went out or the test software froze (I think it was the latter). Eventually, I got a voucher to re-take the test and I was determined to take it at a testing center for avoid the same problems.

Around October, I notice the area of the burst cyst is starting to become raised and scabbed up. I start taking pictures of it daily. At some point, the scab comes off and and a normal open wound was left. I start putting bandages on it daily, first normal size band-aids that run into my hair (which had finally start coming back) and then the small spot bandages that are circular (I use these currently, twice a day). Alarm bells start going off in my head and and I reach out to my plastic surgeon and the wound care clinic. The wound care clinic takes a long time to schedule and eventually they’d just refer me to the plastic surgeon who performed two surgeries on my already and he’s got quick availability so I go to see him.

Before Thanksgiving, I take the Praxis test again and pass it this time. Finally one less thing to worry about. Now I focus on this wound to try to get all I can done before the end of the year when my health insurance deductible will start at zero dollars again.

The plastic surgery world is vastly different than cancer world. I expected someone with slicked back gelled hair that drives a convertible camaro, and while my doctor was not like that, the world of plastic surgery can be. His office was newly remodeled and it is an independent practices with access to both local hospital systems for surgery and records. His nurses all looked like they had been the beneficiaries of his some of his previous cosmetic surgeries, he’s a cosmetic and reconstructive plastic surgeon. The waiting room seats were all stiff wooden chairs meant to look like expensive antiques, country music played loud in the waiting room at the same time a TV played reruns of Family Feud at a significant volume. The dissonance was maddening. This was not the cancer center. I remember one appointment noticing a large blue roll (like a screen) attached to the top of a patient appointment room wall with a pull ring and a string attached to it. It could unfurl and produce a large blue background (for cosmetic patient picture he’d later tell me). A circle of gel sat on top of a jar in on the patient room counter. Upon picking it up, the underside read, “Silicone implant sample.” This was definitely not the cancer center. At the appointment he dug into my wound to gather a sample to test. I was extremely painful. Gel-based lidocaine was used (which in my opinion is worthless). While enduring the pain of the doctor digging into my wound, I was vocal about the pain and asked for some leather straps to bite down on, only half-joking. He reached for the silicone breast implant sample, blooped it down on my lap, and encourage me to squeeze on it. “They’re remarkably resilient.”

One the way home, in pain and despondent, my passenger side rear-view mirror accidentally grazes a  mailbox and shattered the mirror glass. I taped it back together comically with packing tape when I got home. It ends up holding up for months but costs a thousands dollar to repair.

At another appointment (no silicone samples this time) lab work from the sample had come back and I’m placed on antibiotics pills. Giant horse pills, four times a day. I carry a giant pill bottle around everywhere and pop pills during meals and a snack. After eight weeks there is no improvement. And it had been suggested to be to start seeing an infectious disease doctor for the issue. It looks like some sort of surgery is lurking in the future and we consider involving Duke but I want to give Greenville doctors one more shot with infectious disease.

It takes weeks to get an appointment. We are finally back in a professional hospital environment but I’m prescribed more  antibiotics and have to check in at a virtual appointment in eight weeks. Thankfully, my body is okay with the heavy antibiotics. I’m not rushing to the bathroom or anything, which is good since teaching is going fairly well and teachers don’t have the freedom to use the bathroom whenever it’s needed.

The new antibiotic still has no effect and my virtual appointment is anticlimactic. I’m told to take another antibiotic and get an infusion of another and if that doesn’t work then it’s back to getting a plastic surgeon.

The pharmacist fills my new script and cautions me when handing it over. It’s a strong antibiotic prescribed at a large dose called “Cipro” for short. The documentation for caution is lengthy and sometimes contradictory. Take with food but also take on a empty stomach. Don’t consume dairy at 4:30 in the afternoon. Don’t think about pink elephants. That sort of thing. I’m only half-joking. One quick google search (be careful, Dr. Google is dangerous) and you’ll find significant side effects to cipro. I begin taking it over spring break. There is one large side effect I wish someone had warned me about.

Spring break starts out great. I take my kids to the museum of illusion in Charlotte and we hang out around the town all day. The next morning, I take Will to get donuts. We play lots of Fortnite and have fun. Then on Thursday I start to catch up on school work I need to complete over the break. Breaks from school are great but after working professionally for fifteen years I am dependent on routine and breaks from work break the routine. What’s bad about that is if you have a health situation like mine and are used to taking medicine. That Thursday morning, we wake early to drop off cars so that they can have their needed check ups. I can’t remember if I ended up eating breakfast and taking my medicine but I don’t think I did. I’m so used to waking up and getting a bowl of cheerios before taking my medicine every day that I can’t conceive of not having done it. But here’s the thing about cipro I wish I’d known; It lowers the threshold for seizure.

I sat down at a prop-up card table in our newly carpet guest room / office to work. I am grading Algebra 2 tests. There’s a moment where I can’t find some students’ papers that I know I brought home with me. I look under piles. Very suddenly I feel overwhelmingly dizzy. I stare at my hands and can’t focus on them. I try shouting for help but as this point I can’t make words verbal. I can’t control anything happening to my body. It’s like a sleep paralysis dream but it’s real. I’m still trying to shout. I can tell my whole body is shaking. I am fully conscious watching all of this happen through my eyes. I can’t tell where exactly I am (I had been sitting on a chair) but the next moment, THUD. I can see the ground close to my eye and my head is in a lot of pain. I’m still trying to shout and nothing is coming out. At some point my son, Will, comes in to tell me something and finds me. He runs out of the room as fast as he can. Paige is now here and I hear her telling Mina to dial 911. I hear her talk to the operator and describe the situation and give our address. A ambulance is on it’s way. The kids are ordered to go upstairs. Paige is trying to roll me on my side. I am trying to help her but I can’t. I start to regain some control of my body but breathing is still difficult, as if I’ve sprinted a mile. Paige can’t roll me on my side and I can’t control my arms enough to do it. I panic but then test out my fingers and toes. I can move those. Good. I’m starting to come out of the seizure.  Paige is with me and talking me through it. I am out of the seizure but I still have caught my breath and I still feel dizzy and nauseous. The EMTs arrive and come into the room. One EMT is helpful and quiet (a driver and trainee, I’d learn), the other EMT is direct and speaks with an accent I can’t place. He also says weirdly unhelpful things sometimes. He spends about fifteen minutes talking to us and accessing me. I’m catching my breath and trying not to throw up. Paige says something like “I think he was under a lot of stress when the seizure happened.” And the EMT says, “Well, he doesn’t look like he’s under a lot of stress now.” That’s what I mean, he would weirdly undercut some helpful information we were trying to give. We give them a lot of background on me and seizures and brain issues and cancer. They insist on taking my EKG in the ambulance (only place they can do it). I am verbal and moving now, very blocky and clumsy movements. They wheel in a special chair because a full gurney can’t fit through the narrow hallway to get me. I’m strapped to the special chair and wheeled out of the house, thankfully no neighbors are outside staring at me being placed in an ambulance in this Hannibal-Lecter-style chair. I’m in the ambulance and my EKG is fine but given my history we decide a hospital visit is best. “It could be a brain tumor has come back,” the EMT says. Why say that, I think. “It happens a lot, you know.” This guy was so direct, I don’t think he had an inner voice.

Paige arranged child care with the neighbors and met me at the hospital. The ER doctor greets us and wants to send us home until he hears my history. An CT is ordered. Keep in mind CT scans are very board and abstract. A tech once told me, “We can see stuff but it’s like a three year old drew something. A bunch of lines and scratches.” I do fine with the CT scan and think I’m starting to feel like myself. I never threw up, with is good. The doctor gets the results and there’s a spot on the scan they’re concerned about. It could be cancer re-occurrence in the brain. An MRI is ordered. I go through all of that. The MRI results show it’s all clear and fine. I am discharged around 12:45am.  I don’t really sleep that night.

The rest of spring break is trying to see doctors and assessing the fallout.

After meeting with the endocrinologist and my neurosurgeon, we find out: I need to take my anti-seizure med twice a day as intended (I was only taking it in the morning and stupidly not taking it at night), I need a better system to keep track of my meds, my blood pressure is fine and my adrenal insufficiency is not really an issue right now but needs to be closely monitored by me, therapy and/or more mental mindfulness practices are needed. And the big bomb shell: I can’t drive again for six months.

This seems silly and a bit over the top. I strew for a few days and scheme ways to get around this until I discuss it with Paige and see brings up the pesky issue of liability. If I did get into an accident and my medical history became a part of it, it could potentially cost my family everything. Paige also reasons she only has six more weeks of school.

So after Spring break she becomes the sole driver for the entire household. Taking Will to school, me to work, and Mina to school and then herself to work– in that order.

I inform my students of my incident over Spring Break. The hard part is adjusting to the correct dosage of anti-seizure medicine I need to take. One side effect of the medicine is feeling like you’re having a seizure. First thing in the morning, with coffee I’m fine but after 10:30am something happens to my body and when I’m working complex math problems on the board I hesitate and have to sit down because it feels like I’m going to have another seizure. Around this time, I get the other infusion of antibiotic medicine the infectious disease doctor wanted. It’s two infusions that take about a half-hour each time (and apparently $20,000 each time before insurance). The medicine doesn’t affect the wound or the drainage. I wonder if my seizure feelings are from this new infusion. I avoid Dr. Google (I learned my lesson there) and Paige confirmed it was my anti-seizure medication and not the antibiotic infusion causing the seizure-like feelings.

The next step for the infectious disease doctor would have been getting a local plastic surgeon involved and operating again. Throughout this whole process I’ve been told I’m “9 times out of 10”, this works. I’m perpetually the exception to the rule. With this in mind, I made an appointment for Duke.

While finishing out the semester, Paige and I went to Duke to see their neurosurgeon for a consult.

My experiences at Duke at vastly different than local hospital systems. I’ve hardly ever been made to wait long. Appointments are pretty easy to get and I’ve never had to worry about finances. The neurosurgeon we saw was very direct and got straight to the point. First, the situation was non-emergent. I needed a fix but it didn’t have to be in the next week or but probably in this season. Second, I could elect for a local to the wound fix that would probably not hold up over time, or go for a more permanent solution by replacing my bone flap. He also mentioned the possibility the infection / bacteria was could be helping to keep the cancer at bay since that state of inflammation would focus my body on my brain. It was obvious from the framing that the bone flap replacement would be the better solution. However, it would require another meeting with another doctor before surgery, their plastic surgeon who specialized in reconstruction.

Scheduling with the plastic surgeon was a bit more difficult but I managed to get an appointment for the second week of summer. Keep in mind, each of these trips require coordinated child-care, an overnight stay and navigating the maze of Duke University hospitals and clinics.

One of the requirements of meeting with the Duke plastic surgeon was having a CT scan along with a 3D cranio-facial CT scan (this one was new to me). I’ve had plenty of these before and since out appointment was set to 1pm, we thought we could meet with him and then stay the night and leave early the next day to avoid the awful Charlotte traffic (which has delayed us numerous times), I arranged to have both scans consolidated into one and take them at 3pm after my 1pm appointment. However, one afternoon I received a notification on my phone (on the MyChart app– which I practically live on) notifying me my CT scan appointment had changed to 7am. After some calls to Duke, I learned that I would need the scan before the appointment with the doctor in order for the appointment to be useful at all. We changed our arrangements to drive up the night before and wake early the next morning for the scans (I’ve become partial to early morning appointments. They’re quicker and there’s less opportunity for delay since you’re usually one of the first patients to be seen.)

Finding child-care was a hassle but some church friends came through and some adult (or recently adult) sisters on summer break watched Mina and Will while we were out-of-town. Our trips together without kids always seem to be out of duty for my health and almost never for recreation.

The 7AM CT scan went extremely smoothly. Duke University hospital is a huge campus and calling it a maze is an apt description. Our hotel was close enough that we could walk to the hospital for my scan. It took about 5 minutes. It took longer to walk inside the hospital to the radiology department than it did for the scan.

We spent the rest of our morning having a nice breakfast and driving around town to take up time until our 1pm appointment. We went and saw the Kate Bowler mural, and had a fancy breakfast at a place called Mad Hatter Cafe. We tried to go to the Duke library (which features stained glass windows) but parking was crazy and it didn’t work out.

We decided to head to our appointment early. We went through security and put on a mask (required at the cancer center because of immuno-deficient patients) and then got lost. The information desk informed us we were in the wrong building. The building we needed was the next one over and it was easy to get to but we walked what felt like a half-mile to our doctor’s particular clinic.

The appointment was not what we expected. After some brief introductions, the doctor pulled up my scan from the morning (pictured above) and showed me what condition my right bone-flap was in for the first time. It’s a mess. I had never been able to see it before. Thoughts of Hamlet and Yorick went through my head. It’s very strange to see your own skull in such detail. It looked like a ceramic plate that had been glued back together many times and still not resembling the original form. He explained, it was visually apparent that it was in a poor condition and the irregularities from the bacteria and infection needed to be addressed.

I would need two surgeries. The first to completely remove the bone flap. The effect of removing the bone flap would mean I’d have a dent or a divot on the right side of my head. I’d have to wear a protective covering / prosthetic for that during most of the day to protect that side of my head / brain from any inadvertent damage. The bone flap and material collected would need to be tested and I would need to work with their infectious disease doctors while staying at the hospital (between 4-5 days). The bacteria / infection would need to be completely cleared before the second surgery. That could take anywhere between six weeks and six months.

Then I would need to come back to Duke for a second surgery to have an artificial bone flap placed and fitted into my skull. It would be 3D printed and made out of a plastic material harder than bone. After this surgery, the dent or divot would go away and I would appear as I normally do and be able to “go life my life,” as almost every doctor tells me.

The second surgery news was a complete surprise to us. It all makes sense, but we had not anticipated that requirement, the previous appointment with the neurosurgeon has not hinted towards it.

The doctor elaborated on the bone-flap saying that in 60% of cases after a craniotomy the bone-flap heals along with the skull and fuses back into it without issue, but in 40% of cases it develops issues like that what I’m experiencing. The holes in my head that have been draining wounds have just been the paths of least resistance for the infection. That is why the first wound was at the incision site and the second wound moved to my right temple. 40% of cases is a high enough number that Duke doesn’t even take the chance, they don’t even put the bone-flap back in anymore. If not for the infection, I would probably be able to have the bone flap removed and replaced in the same surgery.

We discussed timing for the first surgery. July would be ideal for us but we’re at the mercy of two surgeons and their availability. It would be some sometime this summer. July was a high possibility, most likely before August.

We ended the appointment and left to drive home, processing the news and wondering what the coming months would look like. The drive home was awful. A wreck near Charlotte has us using alternate roads that just ended up more backed up. Keep in mind, Paige is doing 100% of the driving and has been for the last three-and-a-half months. We came back exhausted and deflated, knowing that at least two more trip back and forth lie ahead of us.

The next morning, I woke up to find missed calls and voicemails on my cell phone. I needed to call Duke back because my surgery had been scheduled for June 24th. The issue with this is that we had planned camps for the kids and a trip for me down to my hometown of Tampa and my beloved camp that I’ve worked at and grew up in, Cedarkirk. We had arranged camps that each kids were excited about and Mina and I were going to help out around camp for a while, while Paige was going to stay home and enjoy some much earned solitude. I had bought plane tickets down there for me and the kids and then Paige was planning on driving down to get Mina when her camp was done (Will and I were going to catch the return flight back). But June 24th was in the middle of all of this. There was no way to make this work. I sent an email to the plastic surgeon asking if there was any way another date could be picked. He responded quickly saying the the surgery required two surgeons this was the only time and pushing it back further would probably take us into August (August is when school starts for everyone here. I go to work, Paige goes to work, and then the kids start school on the second week.) August was not an option.

So we cancelled all of our plans to make this surgery work. (This all reminds me of the old joke: Know how do you make God laugh? Make a plan.)

As it stands now, we leave today to head to Durham for the surgery (which I’ve just learned is called a craniectomy). My surgery time is Monday at 7:15 AM (first of the day) and I need to report to the hospital at 5:15AM. The kids are going to spend the week with a college friend on Edisto island. Edisto was a close second to Cedarkirk so that’s good for the kids. I’ve buzzed my hair again and am finishing this up to spend a few last hours with Mina and Will before heading up. Love to all! I’ll write again when I’m on the other side of this.