cancer Archives - Enlightenment At Gunpoint

Brain surgery No. Five

“I decided to reimagine my survival as a creative act.” -Suleika Jaouad

I was instructed to take my daily medication at 4:15am and not to have any water afterwards (food was cut off at midnight). We had to report to the Surgical building at 5:15am. Surgery was scheduled for 7:15AM, the first of the day.

As we walked from the hotel to the Surgical building, we saw few people walking by, few people waiting at crosswalks, and someone sleeping in a bus stop shelter. The air was heavy and humid even at 4:45AM.

The night before was strange and perfunctory. It was as if I was on auto-pilot and all my apprehensive and consternation was behind me. We had arrived in town. Checked in, then had a sketchy walk to get dinner and then settled in for the night.

I think I was most panicked before we left town, especially saying goodbye to the kids. I don’t know exactly what Jesus felt in the Garden of Gethsemane but I was feeling anticipation for something heavy that I did not want to do but that I knew was necessary. I wished I could forget about it, that the kids and I could go to camp and that I could keep taking showers vigorously towel drying my hair (I knew this would be an extremely long way off soon but I didn’t realize how long), and keep enjoying screens like shows and movies with the kids and shows with Paige when the kids went to bed. I had no idea what the post-surgery restrictions would be, I knew in the past they were long and extreme (five minutes of screentime, no shaving or getting my head wet for six weeks, no driving for six weeks– which isn’t a problem at the moment due to the post-seizure restrictions). I just wanted to be able to feel like myself after the surgery. I think my deepest fear is that I go into one of these surgeries and I’ll come out of it in a version that’s not myself and I’ll say things or do things to hurt Paige and the kids. That’s my frequent nightmare. The first surgery was so unexpected and so heavy, I had living wills and a medical power of attorney arranged. I had long discussions of how I manage the finances and go about other duties in case I wouldn’t be there to do them anymore. I recorded numerous audio logs so my speaking voice would be preserved. I said goodbye to the kids, to Paige, my parents, the world. Every surgery I debated if I needed to retrace the same steps again.

It felt like I should this time. But, to be honest, I ran out of time to do any of that. It was time to enjoy a last meal (a very forgettable burger and fries combo), shower (I wanted to shower as many times as I could do before the surgery), shave (I didn’t know when it’d be able to shave again), and then go to sleep to wake up at 4AM.

When we arrived at the surgical check-in floor, there was a couple in front of us. It felt as plain and routine as if checking into a hotel. We gave information, signed some documents on the e-pad where you may or may not see your signature and took a seat and waited. This is the point when I start sending out texts to friends and colleagues, I’ll say “love you” a lot and picture them getting it 3 hours later and perceiving it almost like a drunk text message. That’s fine, I just want to attempt connection before going into the cave again. It hadn’t been too long and my name was called.

I was taken into the pre-op room where everything was nice and welcoming. I went through the usual routine of placing all my belongings in a bag and putting on the hospital gown, then getting the first IV line. The anesthesia residents and doctors came by. After about 45 or so minutes of prep I really wanted some sort of “relaxation pill” to just put me at ease. The surgeons showed up, they were both suited up in scrubs and ready to go. I had to sign a paper acknowledging the risk of permanent brain damage which the neurosurgeon assured me as “very low.” After they left, an anesthesia nurse finally put the “happy juice” in my IV telling me I wouldn’t remember anything afterwards. I remember snippets of conversations people were talking about where they were from some casual laughter. Paige was making sure I was okay. I remember the mood felt light and easy. I remember looking up into a large bright surgical lamp and that was it.

My next memory was waking up and hearing a nurse talking to me. There were lots of questions and I couldn’t understand them. I was very groggy and my mouth was extremely dry. Movement felt restricted. Everything felt slow and clunky, like a bad hangover. The questions kept coming. I couldn’t answer them and I couldn’t follow what was going on. I managed to ask where Paige was. I don’t remember the response. Again, more questions were being asked and I didn’t have an answer. I wanted to know the name of the nurse. She would tell me but I kept forgetting. I was so thirsty. I kept asking for Paige. I couldn’t answer anything except to ask for water. At some point a different nurse came in and I asked for her name, “Marine.” Okay, I thought, I can remember Marine. That’s different and unique. Marine. It was a nice name. I asked her where Paige, my wife was, and she told me she’d work on it. Some cracker saltines were placed on the tray in front of me and I was instructed to eat. I remember struggling mightily with these crackers and they became a big wet ball of crackers in my mouth. It was difficult to open them, eat them, and get them down. I just wanted Paige with me and water. Eventually, I don’t know how long– Paige came into my room and found me. They hadn’t told her where I was. She was exasperated that she didn’t know where I had been taken. Eventually my situation became clear. I was okay. I was in the ICU. The surgery was more difficult than they anticipated. They had to remove more infected skull than they initially thought they would. Infectious disease would be testing the material taken and trying to determine what exact infection I had in order to treat it correctly. When they removed my skull’s bone flap (the part of the skull they remove to perform brain surgery) they saw that my brain’s dura was infected. I know I won’t exactly get this right but the surgeon applied treatment to the dura to help. I’m still fuzzy about exactly what happened. In any case, both surgeons deemed the surgery a success. The need to wait for something to grow from the cultures, then I could be sent home, with the next surgery happening in the next 3 months or so to place a piece of skull back in. I also noticed that I had a tube coming out of my head and it was discharging liquid into a device above my shoulder. This was a JP drain. The drain I had heard about but never got but probably should have. Now it was plugged into my head and draining a thin red liquid.

I was in a lot of pain. My only options were tylenol and oxy. I really didn’t want to take oxy. At one point the head floor nurse heard about my pain meds and asked out loud “Why are we being so mean?” They gave me something else but it was only for the next day or so. Being in a hospital, I had pictured floating on a cloud with whatever pain meds they would give me but since I was hesitant to take oxy, tylenol was my only pain med. And that was not like floating on a clock. I tried the oxy once at night and decided never again.

The next day (Tuesday) I saw a large number of doctors and residents checking on me. The infectious disease doctors and residents asked a number of questions and told me their process of waiting for the cultures to grow. The neurosurgeon’s team would check in and give me frequent neuro exams. As did the nurses. The plastics team would come in and check on the JP drain and the wounds.

We got used to the shift changes of nurses and we were lucky to have an extremely warm and caring night nurse and the day nurse most days. I learned that the nurse who woke me from my surgery was not the most warm or engaged nurse, which explained why I was so confused and barraged with questions when I woke up and why my wife was not informed about my room until much later. These nurses were great. In all of my hospital stays, I always have at least one nurse who is always incredibly caring and goes way above and beyond to help me on this crazy journey of healing. On this trip, I had two. Talking with these nurses helped me to feel like there was life beyond those four walls. By day two, Paige and found her way around to find where the Starbucks and Chick-Fil-A were. The hospital is a maze and you could walk miles trying to get a cup of coffee if you get lost (is the impression I got).

We would get daily updates and they would monitor my progress which all seemed fine. After the first day in the ICU, I expected to be moved to a regular room. In the hospital world, this feels like a promotion. Out of the ICU and into a place close to the door where you leave. But for one reason or another, the step-down units were not available and I would end up spending my entire hospital stay in the ICU.

Around day four is when things got very heavy. The tube for the JP drain was pulled from my head. It is as basic as it sounds. By this point the drain was only collecting clear fluid, not red fluid from my head, which my plastic surgeon informed me was spinal fluid at that point. So a resident came to take out the tube. He told me to take a deep breath and hold it while he would pull. While I was trying to inhale I messed up my breathing but it was too late, he was pulling a tube out of my head. It was over before I could react and I was left feeling perplexed and strange. The hole where the tube was just heals itself. A tube had been pulled out from my head, just as nonchalantly as someone takes a sip of water.

But the real heavy situation came when someone sent from infectious disease came to show me how to administer IV antibiotics to myself at home, work, or anywhere for the next 6 weeks. We had a previous discussion with the infectious disease resident and I did say I would be willing to take infusions to fight this infection. They had described a sort of portable ball system that you take with you that slowly administers the medicine. It became clear to me that this person with us now was not an infectious disease doctor or resident but, she was a vendor. She was telling and informing me for the first time (which I don’t think she was aware of) that I would have a device called a picc line inserted into my arm. This line would be like a permanent IV line, I would not be allowed to get it wet or sweat with it in, that would run the risk of getting that infected. I would have to wake up at the same time every morning, take my medicine out of the refrigerator in order for it to get to room temp. and then undergo a 75 minute infusion. I would have to do this every morning and evening at the same time for six weeks. When I said I was open to infusions I had pictured going to an infusion center during my time off (this is all happening during the summer, my first summer off as a teacher). That was not what was on the table. Whether for insurance, timing, or the requirements of the medicine, I would have to do this myself for the next six weeks. The vendor laid out a place-mat that had steps for performing the infusions. I protested that I wouldn’t be able to do this at work. There would be some overlap for the beginning of school. And like an infomercial she responded that I could do this anywhere, as long as I have a clean area to lay the stuff out.

She laid the place-mat out and started to lay out out the IV piping and tubing. This is the point where I became a coward. I shut down. The vendor was saying words and I wasn’t listening. I heard sounds and my eyes lost focus. I can’t do this, it’s all over. The vendor continued on with the instructions. The only thing that saved me, to allow me to get out of that hospital, to beat this infection, to return to a semblance of a normal life, was Paige stepping up and being incredibly brave for me. She took the IV piping and flow rate clips and practiced the steps as the vendor had her rehearse. It’s one of the many incredible and brave things I’ve seen her do. The vendor eventually had everything she needed from us and left. Paige looked down at me and told me it was going to be alright. But I could tell from her tone and her eyes that she was telling me that in order to convince herself of it. She had done the job when I couldn’t and she knew she’d have to for the rest of the summer.

Without her, I wouldn’t be alive.

The next step before my discharge home would be to have a picc line placed in my arm. It’s a minor 20 minute surgery with only local anesthesia. There was still no growth in the cultures from infectious disease. This procedure would insert a thin wire which would be a catheter that would go from my arm to my heart. I was extremely nervous about this procedure. It was scheduled to take place at 8:30pm Thursday night. Once this picc line was in place I would have to begin my daily infusions that would last for the next six weeks. The late time of the procedure especially worried me. I didn’t want the doctor’s at the end of their shift to be tired and mess something up.

We were waiting around in my room and saw people coming and going around 8pm. Soon a couple of people dressed in head-to-toe paper protective wear came into the room towing a stack of various boxes. It was a team of two, a nurse practitioner and a technician. They started unpacking their boxes and explained that the procedure was a series of un-packaging things for them. They also mentioned that they had started work at 7pm and only had three procedures tonight. Only one more after me. This made me feel a little better but I was still nervous about a procedure that would insert a device into a vein in my arm that would reach all the way to my heart. I was instructed to lie flat while they lowered the railing on my gurney bed. The pair raised it up the bed about a foot and a half and asked me to put my arms out at my side. I was lying crucifix-style. It almost felt like I was about to be ritually sacrificed. They began the process of opening packages and lying out sterile hospital coverings over my body. I was covered in protective paper with pre-cut holes for them to access the parts of my arm they need to work with. They made a few measurements and continued to unpack items. A local anesthetic was injected into my right arm (I chose my right arm since I’m left handed) after which I didn’t feel a thing. I was trying very hard to only focus on the ceiling. I did not want to see anything they were doing. The only things I saw were from my peripheral vision. I could sense them working on my arm and unpacking more items. At some point a wire was taken out (the catheter). They continued adjusting things and unpacking. Some time later a large monitor device was taken out of a box and now it was turned on. I couldn’t feel it but I could tell they were inserting the wire into my arm. The large device started making musical sounds that were pleasant to hear. The nurse and the technician discussed something I couldn’t understand. The device continued making pleasant sounds. This was a surreal experience. It was as if they were proceeding based on the music the device made. There may have been a screen on the device too, I’m not sure. At some point the pleasant sounds were agreeable enough for them and they had finished unpacking. The procedure was done. The paper coverings were removed and my bed was lowered. I now had a picc line in my right arm. I was glad it was in but this also meant no swimming, showers or outdoor experiences involving sweat for the next six weeks. The team packed up their boxes and wished me well, they were very nice to talk to the entire time.

There were still no results from the infectious disease team but at this point they were only trying to rule out the most difficult infections (like MRSA). I was ready to go home. A nurse agreed to let me take a walk around the hospital building and the floor. It wasn’t until then that I realized most of the people on my floor were unresponsive patients. To them, I was an oddity. Once I got back I put my street clothes on and just waited for staff to check in so I could give them the, “I’m-ready-to-go,” look. I scared a nurse by getting up and getting a glass of water by myself (I was not attached to any IVs at this point). Finally the word came, I would be discharged soon. But this also meant that when we got home I would have to begin my first infusion. A delivery service would be bringing me all my medicine and required medical supplies in a temperature cooled box. I was also returning home with a picc line dangling off of my right arm. If this got caught in something and pulled I would need to go to an emergency room immediately. The previous night’s technician recommended cutting a hole in a sock and using that as a sleeve to protect the picc line (this is what I ended up doing at home until I had the chance to purchase sleeves from amazon) but for the car ride home the picc line dangled nonchalantly at my side.

We said our goodbyes to the friends we had made on staff and somehow tried to remember we would be coming back soon for a second surgery to place a device back in to act as my skull. However, before we could drive home we were instructed to drive to downtown Durham and go to a start-up company that would scan my head to 3D print a device that would protect my exposed skull until the second surgery.

It was a strange but not unpleasant visit. It was a start-up in a building downtown and the owner met us and showed us around. We really just wanted to go home but we let him give us the tour since this protective device seemed essential to my care until later. The company got its start from a few former college football players at Duke that started making custom 3D printed protective coverings for college and professional athletes. Somehow the plastic team at the hospital heard of them and Duke started sending patients there for custom devices. My bare head was scanned with an iphone app they created and we were told a device would be mailed to us in a week or two.

That was our last stop and then we finally finally finally headed home.

The next six weeks were long and difficult. It included messing up the first infusion the night we got home and calling multiple emergency lines because blood got into my tubing line. But we tried to make the best of the summer. I watched multiple Star Wars movies with my son. We still made a trip down to our camp, Cedarkirk in Tampa, for family camp. And I became used to administering the infusions myself, finally giving Paige a bit of much deserved rest. Not being able to shower was strange, so I ended up taking baths and buying other protective sleeves to keep the picc line from getting wet. We completed the 72nd and final infusion on the weekend before the beginning of the school year. I still couldn’t drive due to seizure protocol but the green light would be coming soon. I had finished up the infusion in time to be there for the first day of the school year. When my picc line was removed the doctor (local in Greenville) said it looked great. The picc line at long last was removed and in twenty-four hours I could finally shower again. It felt amazing. Don’t take your showers for granted.

I finished all of this up right in time to be present on the first day of school. I am about to head back up to Duke for the next surgery to put a plate back into where they removed part of my skull (the wait ended up being six months not three months). The semester I spent teaching and getting ready for this has been a long, arduous tenure, but that is a story for another time.

I’ll let you know how the next and hopefully final surgery goes.

Check my Instagram account (@john.catoe) for some pictures of the event described above.

Scar Tissue

Craniofacial CT scan of my skull done at Duke Univeristy Hospital on 6/5/24. The skull flap is the piece they remove to access your brain during a craniotomy. After two craniotomies and more work you can see the condition of my bone flap is poor.

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.

Limits & what a sort of early retirement is like

When I last wrote I had a rather quick ending to my post. I think that post was perceived as a lot of Gunpoint, and not much Enlightenment. Well, maybe I can get back on track here.

Thanks to everyone who reached out to make sure I was okay and those who gave me advice to help. Let me catch you up to where I’m at this fall.

I saw my endocrinologist in late July and the visit resulted in a discussion and the order with a battery of blood tests. She warned me that she was going to require a lot of blood to figure things out, and also that additional money would be needed to require the tests she was going to order (on top of the out-of-pocket max I had already met). I was also instructed to buy a reliable blood pressure monitor and record the results at least twice a day.

Two days later I was working on a pipe under our kitchen sink and experienced a mini-seizure. It was very scary– one second I was hunched over white-knuckling a wrench against a PVC pipe and the next my hands were shaking uncontrollably. I was narrating what was happening to me to Paige who was over my shoulder. My words were cryptic to her at first. “I can’t move,” and “my hands are shaking,” it was difficult for me to consciously describe what was happening to me as it was happening. Eventually Paige helped me to lie on our kitchen floor and got me some towels to rest my head on.

While laying there, I started some deep breathing exercises and I felt a sensation take control of my face. I knew the right side of my face (also the side of both my surgeries) was twitching involuntarily. Paige later told me it only lasted for four to five seconds, but for me it felt like five minutes. I laid there breathing deep for the next half-hour or so until I thought I could sit up. Luckily, I never lost consciousness and did not have to go to a hospital or any doctors offices immediately afterwards. But my mind raced with the possible implications. I messaged my neurologist and endocrinologist about the event. They put me back on the anti-seizure drug I had previously weened off.

I found out the hard way that I can’t “power through” things— physically or mentally. My blood pressure is too low to take on the tasks I previously had. I suspect the low blood pressure had a lot to do with my mini-seizure.

Being powerless and not being able to trust your body is a profound experience. Some people never have to go through this until very late in life, some people not at all. I feel lucky that it had these experiences as a middle-aged adult and not in my youth. It really drives home the point that nothing is guaranteed– nothing is a given. Raising a glass to your health is not an empty gesture. Disability can happen to you in an instant. If you’re disability-free, find gratitude in that. And try to empathize with those who do have disabilities.

[THIS ALL SOUNDS PRETTY DARK AND BAD, BUT I PROMISE, IT GETS BETTER! JUST WAIT.]

In another two days I was going back to the endocrinologist’s office to start those lab tests. The very first was a simple blood draw lab test. When the results came back I was told I had almost no cortisol (a stress chemical your body needs to function daily) and that I had, in a sense, been running on fumes since I tapered off my cortisol steroids in November of 2021. My directions not were to start a low-dose cortisol steroid called hydrocortisone (you may have this in your house as a topical cream to put on bug bites), and to come back to for more tests soon.

(We also chatted about Neil Gaiman since I had brought a copy of Coraline to read while waiting. She was currently reading American Gods and enjoying it. We haven’t talked about the Sandman show yet but that’ll happen at our next appointment.)

These results and the implications made sense to me. I had been mentally foggy and exhausted for almost 9 months. It was impossible to gain weight, energy, or strength. No wonder I slogged through work when I tried to go back, why I couldn’t increase my work hours, why I had no motivation to do the things I loved doing with any free time.

Usually, the feeling that a revelation like this brings about middle aged adults is a light-bulb moment. Even when told about a cancer diagnosis, the immediate feeling is not one of resignation, anger, or disbelief but one of clarity. This happened when I was told about the 2.5cm brain tumor in my right-frontal lobe. Suddenly, the headaches and the vomiting all make sense and the mystery was gone. So there are some brief moments of relief when news like this is passed down to a patient. This makes the ensuing feelings of dread, disappointment, and foreboding more agonizing. The questions are answered by more questions.

So as July ends I started taking my low-dose medicine. For the month of August, were no noticeable side-effects. However, I didn’t see any benefits either. I was stuck at my low weight, not gaining any energy or strength. I was simply told to keep taking the medicine. Then mid-August rolls around and school starts. I had planned on starting work in some sort of educational capacity when school started. But I consciously decided not to rush things or sign up for a bunch of training or workshops since my body isn’t responding to the medicine yet and my daughter is starting middle school.

The first day of school comes, and I can tell that this is going to be a major lifestyle shift. My son is still in elementary school but my daughter is now starting 6th grade at a middle school. The elementary school is our Hobbit Shire. We don’t want to leave our Shire. It’s comfortable, it’s close, and we like the teachers and friends we’ve met there. Mina starting middle school forces us to leave the Shire. Middle school is more like Rohan or Gondor. It’s different, it’s far away, and it’s unknown to us (and probably no “2nd breakfast” or “elevenies”). By the time I come home from dropping our daughter up, I’m exhausted. And it’s well past the 7:30am mark which is the typical start of an engineering day. It’s past the start of any school day. I am glad I didn’t rush into anything because it wouldn’t have worked. On a positive note however, the longer commute and new routine doesn’t allow me to come home and crash into a morning slumber. I stayed up and drank coffee. I slowly started to be productive.

I found myself walking my dog almost every morning, reading books, playing guitar, and cleaning things around the house. I felt a nagging sense of guilt. “I should be working,” “I should be contributing to our household monetarily,” “I should be contributing to society.” As one friend told me his therapist said, I was “shoulding” all over myself. Eventually I made these voices go away by allowing myself to just have one month off. It’s just one month. Give yourself one month to not think those thoughts and not feel guilt. This ended up being difficult. Our culture does not make this easy. Sometimes I found myself googling employment opportunities of different careers and jobs than the one(s) I’d envisioned. I told myself to join the gig economy one day and then convinced myself to become an entrepreneur the next. At some point while on a post-coffee moment and walking my dog I managed to drown those voices out and take my month off in peace.

Some observations about not working. It’s harder than you think. It’s incredibly lonely, and if you don’t treasure solitude than you’ll be desperate for the social interactions you’re missing. When the topic of what I do comes up with mixed company I dub myself “Mr. Mom.” I made lunches for the kids in the mornings, I act as their chauffeur to schools and back (for Mina). I do the grocery shopping, I try to make dinner (most nights), and struggle finding food the kids like. (Mina tells her friends that my only job is to “feed the dog.”) I plan elaborate projects around the house but tend to neglect routine cleaning. I don’t feel drawn to be a become a PTA parent , or to join any organizations that have attendance commitments. I do want to volunteer for charities here and there. To maintain some sort of social life, I try to organize lunch with a friend once a week. Most of the time people are busy, but I do get to have some good lunches with friends.

Another aspect of taking time off is if you have a working spouse. The concept of retirement that’s been shown to us is a couple enjoying life together with all the time in the world to do everything. But I don’t think that will be the case for most of us. During my time off, I found myself lonely but well rested, meanwhile, my wife Paige is socially fulfilled but exhausted from her daily grind. Time off, or a sort of retirement, is not the “grass is always greener” promise that’s on display during financial investment banking commercials. If you or your spouse really loves their job and it’s a job you don’t typically age out of like teaching or education, or they are ambitious and driven to work until old age, then you may mismatch your timing of retirement or whenever you have extended time off from work. This maybe not a problem if you don’t get along with your spouse, but I want to use my free time to do things together (travel, take walks, baking, crosswords, etc.). That’s been an unexpected discovery for me during my extended time off.

Quality of Life (AKA where I’ve been)

I’ve lost so much weight it’s a problem. None of my clothes fit and I need special belts with no notches to make sure my pants stay up. I think I’m back down to my high school weight or even maybe late middle school.

Every since my first brain surgery I’ve notice a “pulse” in my head when I rest against a pillow. It’s like what you might feel in your finger when you have a finger stick at a doctor’s office. I think of Buddy the Elf saying, “My finger has a heartbeat!” It keeps me awake unless I position my head in the exact center of a pillow. Now with the weight loss, I feel my whole body’s heartbeat at night– It’s strong enough that I feel the movement in my chest. I make an art of finding the perfect position where I don’t feel any pulses long enough so I can sleep.

My evening routine of sitting and building LEGO sets is met by back pain and body aches when I standup to finish for the night. The act of getting down to a hard surface and then trying to sit and then stand back up filled my head with the pain I knew that would come. My upper-body strength is gone. I struggle to pick up Will whenever he asks, most of the time I needed to leave it to Paige.

Mina and me on her 11th birthday. Cake by Paige.

I try to do push-ups like I would do after my treatment, and my body collapses on to the carpet (forget about trying it on a hard surface).

I find myself in a position that many men fear, empty of strength and endurance. I am emasculated.

When I took my last dose of cortisol steroids in November of 2021, and now I feel stiff and uncomfortable all the time. I was told the feeling would “probably” last about six months. My vegan comfort food is void of all taste (all vegan food really), so I abandon veganism, ironically to become more healthy. When I need it the most I cannot gain a pound of weight despite indulging on all of the food I was avoiding during my time of cortisol steroid bloat and heaviness. I eat cake, milkshakes for lunch, ice-cream for after dinner. The sugar headaches are gone, and the weight is gone. Yet I cannot do the things I desired the most when I was under the control of the steroids. Even sitting down for long periods of time hurt– I have no butt. It was suggested I take a cushion with me where ever I go, but after seeing a co-workers cushion laughed at as a “booster seat,” I decide to live with the pain.

When I’m at doctors’ offices they measure my blood pressure and once its displayed they exclaim and tell me I should go to my doctor or a hospital. They make me take it again when I’m standing up and its marginally better. The only reason they let me leave, I think, is because Paige is always there with me. My blood pressure is low but I have little trouble in daily life. If I stand up fast, I steady myself and move on. This continues for months. I return to work. The doctors have cleared me for that.

I arrange a part-time schedule. It’s only supposed to be two days a week. It seems like enough to make progress on projects but not get sucked into the inevitable overtime deadlines and crunch. Returning after two years and after the worst of the pandemic, I know my boundaries, and I won’t let work overstep it’s given place in my life. During working hours the office has the low hum of computers running and mice clicking, but the human interactions are as silent as a monastery. There’s the half-hearted, “How was your weekend?” or technical questions about CAD features. I sit in the cube-farm of the office. It features brand new standing desks and low-profile cube-walls so everyone is visible. There are project discussions about how late somebody can work that night, if a deadline can really be met, or griping about a new county permitting requirement. But when it comes to actual sharing or getting to know a human being, it’s radio silent.

“I’m a stage 4 cancer survivor and that’s why I haven’t been here for two years,” I announce to no-one in particular.

Engineers do not have the tool set to talk about or address cancer, or at least it’s very rare. They are good at laying out a project and finding the resources to execute the issues, but cancer is not a billable client with a deadline.

To their credit the people around me respond and thank me for sharing. I realize then that most of the office knows except the people I’m sitting three feet away from whenever I’m in the office. “I wanted to tell you because everyone else knows except you all.” I realize it’s the truth as I’m saying it. My disease has been a known quantity to the people that were there that Thursday when they found a 2.5cm malignant tumor in my brain. But its been two years and everyone that was there has an office with a door in this new building, and the cube-farm are all new co-workers to me except one person. I understand that it would be against the law for anyone to discuss my health in the workplace, but it’s still alienating.

My questions about software changes I’ve missed are met with helpful responses and patience. I still find myself heading out to lunch alone, usually grabbing a milkshake and some fries. Despite the junk I put into my body, my weight doesn’t move. I know this isn’t healthy– I want to gain back weight and feel healthy before making myself a diabetic or give myself a heart attack.

My non-work days usually consist of shuttling the kids to school and picking them up. Some of those days are stacked with doctors appointments once the kids are at school. This routine starts during the winter and my body takes in any cold and holds on to it for too long. At several outdoor winter events I attend, I notice my hands turn white and my teeth chatter. I seem to be the only one this cold, everyone else is commenting on how nice it is outside and we should hold these events outdoors on a permanent basis. Even sitting at home I find my hands turning white. I do everything I can to warm them up, but nothing stops me from being cold. Especially office air-conditioning. I go to the mens’ room just to run my hands through hot-water.

In a sense, I hibernate through the winter. On off-work days I drop off the kids and go back to sleep until lunch. I might do a grocery run or make insurance calls for whatever latest billing errors that I’m going through, and then I nap until it’s time to get the kids. In this time I don’t do anything I want to do, even though I have the time for it. Even when the weather changes, my habits stay the same. I don’t write, I don’t play guitar, I don’t take walks, I don’t play video games or watch TV. I live 2 seasons like this. I stay working out for 3 months, and then leave in early June.

We try to squeeze all of this into a mid-June 20 minute doctor appointment with my oncologist. My scans are good, there isn’t much to talk about from a cancer-perspective. He deems this a “quality of life” issue and says he will refer me to an endocrinologist. We spent the summer waiting for a phone call. The phone finally rings in July and offers an appointment in early August– and our hearts sink. That’s so long from now. I’m on a waiting list for cancellations. I sometimes call to just if there happens to be an opening. There is not.

My phone rings in mid-July and they have a cancellation at the end of July– if I’m interested. I was drained and cynical at this point, but this appointment would be more helpful than my body could anticipate .

A Good Day to Die

After my seizure experience I am attempting to pick up the pieces and reconcile my two very different experiences of near death.

If someone hears about a brain tumor most people would think it’s the end. A seizure, on the other hand, happens fairly often. But for me, it’s the seizure experience that has me seeking out ways to cope with the trauma.

My brain tumor experience was full of messy emotions, mystical experiences, and saying goodbye to everyone. It was long and drawn out. I waited five days in a hospital room for the surgery. I had Paige by my side nearly every minute. My parents were there, I had visitors from church who brought flowers, and we had family drop everything to take care of our kids for what ended up being my nine day hospital stay. I really felt like I left everything there. I was full of gratitude and awe looking back at my life and what I had experienced. There was no bitterness, no regret, no desperation for anything more. Before being wheeled off to the operating room, I was held by my wife and my parents, and I told them where they could find me if I left my body. It was sweet, serene, and peaceful.

The seizure experience was the exact opposite end of the spectrum. There was no build up. There was no time to contemplate. It was a futile struggle of myself against my own body, failing to cooperate but knowing that something was very wrong with my brain. I flailed at a window in front of Paige and my children, asking for help, and then fell into a bush and went to black.

That’s that.

Jim Allison: Breakthrough

If you read one book, watch one movie or show that I talk about on this blog: WATCH THIS DOCUMENTARY. You can stream on a PBS app or you can just click here.

This past Monday (4/27) PBS aired a documentary on their Independent Lens program. Jim Allison: Breakthrough serves as a part biography and part history of cancer treatment. Although the documentary is an hour and half, it feels like it goes by in 20 minutes.

Jim Allison is the reason I’m alive and well today. His work led to the development of the drugs used for all immunotherapy treatments. He spent half his life chasing his own theory on effective cancer treatment and then finally found an indisputable medicine using the body’s own immune system. But just because you have a cure for cancer doesn’t mean it gets made and distributed. Allison has dedicated the rest of his life (not just professional career– his life) to making sure that this treatment got developed and distributed. And it was quite a war.

One of the things this documentary shows to you is that even with incredible breakthroughs and solutions, it still takes the mechanism of the business world to implement those solutions and put them on the streets. Many times businesses don’t have the courage to do it. It’s much safer not to spend the money, not to take the action, not to incur the possible liability. We live in a very real vetocracy. It’s a system that nearly kept one cure for cancer from getting to cancer patients! Jim Allison, for very personal reasons, refused to let his cure die on the vine. And he wasn’t alone– there had to more champions within business to make this happen (specifically, Dr. Rachel Humphrey).

The documentary also features someone who was diagnosed with melanoma in her 20s in the early 2000s. This was before immunotherapy had been accepted as a possible treatment for melanoma. Despite conventional cancer treatments, the tumors spread to her brain, leaving her with metastatic melanoma– my same diagnosis. Through various twists and turns, she becomes one of the first patients to undergo immunotherpy. Her tumors disappeared. Completely.

There is a chance moment when her doctor gets to introduce her to Jim Allison, the inventor of the treatment that cured her. In recounting that meeting, she says these words:

I just couldn’t talk.

How in the world are you suppose to adequately thank somebody, standing across from you, that you are 100% positive that without them you wouldn’t be here?

There is no “thank-you” for that.
Sharon Belvin

Those words touched me. They have a lot to do with what I write about in this blog. This sense of “There is no “thank-you” for that.” I’ve called it grace. Maybe it’s something that can’t be contained in words at all– something ineffable. But it is real. I’m living proof.

Again, WATCH THIS DOCUMENTARY! Look for Jim Allison: Breakthrough on PBS’s Independent Lens series, or click here. You’re in for quite a ride. Jim Allison does not project the scientist-curing-cancer vibe you might imagine!

Love in the time of COVID

Photo by James Emery, creative commons licensing

I am grateful for my cancer. Cancer has taught me to focus on the moment. No matter what happens to me, nothing can take away the moments I’ve lived in. It is impossible to fully take in a moment without love. Without love there is no inner peace, there is no stillness. Can you imagine fully appreciating a hot shower, a quiet walk, or looking out at the stars without love?

I’ve read that 99.9% of our universe is composed of empty space. But I don’t think so. I think it’s composed of love. It’s hidden in plain sight, right in front of us, waiting to be taken in.

Yes, there is also great suffering. But suffering can show us how love unfolds. It can show us the infinite dimensions of love.I don’t know why we need suffering to really see it, but we do. Suffering forces us to focus of the moment with sharp resolve.

There was once a man who was running in through the jungle, chased by a hungry tiger. After breaking through a clearing, he came to the edge of a cliff. The long fall into the river below would be fatal. The tiger forced the man to stumble and fall but he grabbed onto the edge of the cliff with his hands. The tiger was relentless and started for the man’s hands. The man saw a branch growing from the face of the cliff just below him and he managed to grab onto the branch with his hands. Dangling from the branch, the man saw a plump strawberry had sprouted out of some greenery on the branch. Hanging on to the branch, he reached out and grabbed the strawberry and popped it into his mouth. “This strawberry tastes delicious,” he said.

Life Post Cancer Treatment and Life During COVID

I remember the first moment we decided that we were going to shutter-in because of COVID. It was March 13th and I ran some errands. I was at Publix and I felt like I knew a secret no one else did– I loaded up on food and milk to get us through what I hoped would be a couple weeks (it wasn’t). It was a Friday so it was easy to slide into a typical weekend routine and just tell the kids we were eating at home and not going out for meals.

Then we woke up on Saturday and it’s been the same day ever since. No work to go to, no school for the kids.

Stillness is the Key

I haven’t read the book yet, but I pre-ordered it and it arrived on my doorstep on Tuesday. I am so excited about this book.

Some background. I found Ryan Holiday on a podcast when he released Ego Is the Enemy. The podcast was simply a sample of him reading a selected chapter, entitled What’s Important to You? It tracks the post-Civil War careers of Ulysses G. Grant and William Tecumseh Sherman (known to us as General Sherman). While Grant was swept along into politics, eventually becoming president, he was out of his depth and did not know when to say no or how to be comfortable with himself. He accomplished little in office, and then was caught up in a Ponzi scheme. He finished his days trying to write his memoirs in order to leave something behind for his family.

The Kingdom of Heaven is Within You

I’m excited to share that my PET scan came back with phenomenal results. The melanoma has not spread anywhere new. Of the existing 6 tumors that lit up previously, only 1 tumor showed up on this PET scan, registering at 5mm (down from 1.2cm in May). 5mm is also the smallest measurement a PET scan can pick up. This is the nodule in my right lung. I don’t have pictures of the scans to share with you, but I will tell you that the May PET scan of this nodule and the August PET scan are night-and-day. My oncologist even remarked that they wouldn’t even notice if they weren’t looking for it. The term “remission” was used (more on that in a bit).