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.

Continue reading “Scar Tissue”

Healing Wounds

I have a hole in my head.

It’s about 1mm wide and it’s at the incision site from both of my craniotomies.

The scans of my skull show a thick white outline of what my skull is shaped like. It’s all healthy and round, what you’d expect a skull to look like. Except the incision site– it’s my right side, about 2″ from my right temple. When you look at that part of the scan the think white line becomes broken and infrequent, like a bridge that’s been bombed.

I either have a bone infection or dead bone beneath that area. This is the same area that’s been shot with gamma ray radiation twice. Radiation can make an area extremely difficult to heal, but for small cancerous growth it’s the only early option (besides letting the cancer progress).

After my last craniotomy I didn’t think the scab that kept forming on the side of my head was much to worry about. The entire incision line across my scalp had scabbed up and eventually flaked off and healed. But this area kept forming a scab. At a routine check-up with my neurosurgeon I mentioned it and he referred me to a wound care center to get it checked out.

If you combine a retirement home, a hospital, and a doctor’s office– that’s what a wound care center feels like. My first appointments were easy and quick. They would measure the hole, apply a gel-based lidocaine ask if it was still “draining”, then open the wound back up “debriding” the wound using a sharp circular tool. Debriding the wound opens it up so the side of the wound don’t dig into the surrounding tissue, this resets the wound and should allow it to heal in those problem areas. The doctor said there was a small chance it was a bone infection but that he didn’t think that was it. They would have to see me weekly until it was healed. I was also to consume at least 60g of protein a day and apply an antibacterial ointment to the wound. Ensure has a line of high protein drinks they recommended. Each drink has 30g of protein. But these drinks are not cheap. They scheduled my next appointment and told me that this wound should heal very quickly and they did not expect me around much longer in the wound care center. 

I kept up the weekly appointments through Thanksgiving and Christmas. Since the wound had no real affect on my daily life I wondered if these appointments were necessary but after talking to a doctor friend about bone infections and understanding that it’s an infection and not something to be ignored, I saw the need to address this wound and have it healed. After Christmas, the appointments started to break the usual routine. At one point the doctor came in, looked at the wound, and declared he wouldn’t be doing anything to it today. He made a referral for me to get a CT scan and consult with a plastic surgeon. One of the nurses had previously mentioned the extreme-side of wound care which would involve lots of time and costs not covered by insurance. I hoped it would not come to that but I could see that it was approaching.

I completed the CT scan (where the skull beneath my wound looked like a bombed bridge) and met with the plastic surgeon who told me I would need to have an out-patient surgery to see what’s going on with the wound and to most likely replace that part of my scalp with a healthy part of my scalp. He mentioned that the surgery would need to be “saddled” by something called hyperbaric oxygen therapy (usual abbreviated to HBO or HBOT). Fortunately, the recovery from the surgery would not require any of the limitations I was used to from craniotomies.

I went back to wound care for appointment after completing those referrals. I expected the quick in-and-out that I was used to but it turned into a hyperbaric oxygen therapy orientation. Here I was told that HBO would require me to come to the wound care center every weekday to be be confined to a tube for 2 hours.
I was given a list of “don’ts”: don’t wear deodorant, don’t wear any hair products, don’t apply any lotions, don’t wear glasses. Later I learned that HBO therapy is the equivalent of a dive 33′ below sea-level with a pressure of about 15 psi (pounds per square-inch). I would not be allowed to bring anything in the tube with me as it would be a fire risk. I would most likely experience ear-pain due to the pressure. There would be an increased risk of seizure due to the possibility of oxygen toxicity. Once the nurse finished her orientation, the doctor explained the science about it and how it would help the healing but at that point my mind was somewhere else.

I had anticipated 2023 would start some other way.  I had begun looking into teaching and substitute teaching training for the local school district. I was looking forward to getting back to work and returning to the flow of a routine, and earning money again would help too. But what I thought when the HBO nurse instructed me to follow her to see the HBO room where I’d be starting next week, I walked into a low-lit room with two large tubes, a person lying in each one,  it looked very casket-like, there was a TV attached to the foot-end of the tube so that the patient could watch something, the TVs were both playing black-and-white westerns and there was no noise, the people in the tubes were older, I met another HBO nurse who informed me they were only sleeping, and I asked myself silently Why this?

As I was escorted out I was told I could bring in any DVDs and that they had DirecTV, so I could watch anything on that. I would start whenever insurance approved me. (It would be the next Monday. Insurance only approved me on the condition that I pay out family out-of-pocket max., even though it would only be me, the individual receiving treatment.)

The next Monday I showed up, went to a locker and changed into baggy starch-heavy hospital scrubs (complete with disposable footies– can’t pick up floor germs on the way to the tube). I sat on a gurney where they checked my vitals and ears. Then prepared me for what I was going to experience in the tube as they gave me an oxygen mask (like the ‘in-case-of-emergency’ ones you see in a plane) and a small water bottle. The gurney attached to the tube. I told them I didn’t want anything on the TV for now. I laid down on my back. I was then pushed into the tube and heard the air sealed shut behind me. The nurse demonstrated that he could talk to me from a little phone attached to the tube (it looked like the prison-phone set-up that you’d see in a TV show). And that he could hear me if I talked. The air became still and then I felt a growing sense of pressure in my ears. It was almost like flying in a plane taking off or driving up a mountain road, except the pressure kept coming. I resisted the urge to grab my nose and exhale and pop my ears (this was a mistake). The pressure in my ears kept building. Opening my mouth and moving my jaw didn’t help. The pressure built into pain and the pain somehow traveled from my ear to the my jaw. The nurse checked in on me with the prison-phone. I told him what I was experiencing. He slowed down the pressure. I would get to 15psi and stay there for 1 hour and 40 minutes. It usually takes 10 minutes to build up to pressure and 10 minutes to come down. But this time would take longer since that 10 minute pressure build would be slowed. I got to pressure and my pain lessened. Then it felt like being on a plane, just laying down.

This is my tube for hyperbaric oxygen therapy. I’ve heard some people get claustrophobic but compared to PET scans and MRIs, this tube feels roomy to me.

A few friends knew I was going to be doing this and I heard a couple of ideas repeated. “You’re going to be a Zen master of meditation after this.” and “What will it be like? Since it’s oxygen being pumped in there, are you going to feel amazing afterwards?” The Zen master experience and the Vegas casino experience. I can tell you, it’s never been like any of those. The pressure build is distracting enough that my deep breathing didn’t really put me into a meditative state, as much as I tried. I didn’t feel amazing like I was into a casino with oxygen being pumped into it to make people more amped up and impulsive. That first time in the tube I felt very bored and towards the end, profoundly sad. It wasn’t about anything in particular, although my thoughts sometimes drifted to the game That Dragon, Cancer. I think it’s just the effect of being lonely and not able to access distraction. If you were to lay two in a tube for 2 hours with nothing but your thoughts, would you not feel sadness at some point?  Or the whole time?

After the allotted time the nurse turned a dial on the outside of the tube and I felt the pressure releasing. My ears popped like Styrofoam as a chill passed over me. The temperature doesn’t change in the tube, even though you feel like you’re getting warm when the pressure starts and getting cold when it’s being released. After they checked my vitals I changed back into my clothes and left. It was past 3:30 at this point. My appointment started at 1pm but I arrived at 12:30pm since I wasn’t sure how all of this worked.

The next day I did some googling and found out that audiobooks can be played on DVD players. I checked out a Stephen King audiobook from my local library. I wasn’t too picky, I just needed to start something that day. Over the course of that week I learned the routine. I came in early, changed, and was ready before 1pm (time slots weren’t negotiable). Before and after tube time, I would talk to the nurse about my upcoming surgery. Details were emerging. The number of HBO sessions I needed before the surgery would be 5. The number of sessions I would need total would be 30. (30!) I could feel my willingness as a patient was lagging. Cancer? Ok. Brain surgeries? Sure. Wound Care? Blah. I would never be the favorite patient at the wound care center like I thought I might be at some other doctor offices. I wasn’t trying to be charming or funny, I was simply going through the motions.

When the weekend came, I was excited about not having to spend 2 hours of my day in a tube! I gladly did all of the “don’ts”.

I went back the following Monday to start my groundhog day routine of sitting in a tube for two hours. It was at this session the nurse told me she had heard about my surgery date, it would be next Monday, February 6th. While in the tube I listened to a particularly profanity filled section of the Stephen King audiobook, I realized that if the only way to communicate to anyone outside was by me just speaking, then the nurse would be able to hear everything I was listening to inside the tube. I felt a little self-conscious but there was nothing I could do so I sat back, listened, and waited. As soon as I got out, I asked You can hear the book, can’t you? The nurse confirmed but told me that she can turn down the volume on the tubes so she doesn’t hear anything that’s being played. And she said, “I just can’t listen to Westerns all day.” That same day another patient was starting treatment in the other tube next to mine. An older gentlemen, he chose to watch Fox News for his two hours.

The next day the nurse told me a detail about the surgery I hadn’t anticipated. I’d need a JP-Drain attached while in surgery. The nurse described it as a grenade shaped device connects to a tube that runs into a wound in order to drain it. You have to detach the “grenade” part and dump any drainage it collects from the wound it’s hooked up to. A discussion regarding the necessity of a haircut (or buzz cut) followed. If I am vain about any aspect of my appearance, it’s my hair. There was really no way to know if I should buzz it or not for the moment. The second I got back in my car I googled “JP-Drain” and searched for images of what a JP-Drain attached to the scalp would look like. I called the doctor’s office with my question but could only leave a message (which is standard). Paige had to endure all of my anxieties about these unknowns I would be walking into, and trust me, there were many anxieties.

A JP-Drain. Attribution: www.oncolink.org/cancer-treatment/hospital-helpers/jackson-pratt-jp-surgical-drain

(Paige also had to endure my anxieties about the previous week. Not just the adjustment to tube-time but I was getting over a cold which turned into a head-cold. The won’t let you go into the tube if you feel sinus pressure in the top of your nose or your forehead. I didn’t feel that. I just had a head-cold. Enduring the pressure with a head-cold generated a lot of headaches for me and some even when I slept later that night at home. It was alarming since that’s how my whole journey started. I asked my doctors about it and the consensus was that the tube can’t do anything to you to exacerbate headaches. Eventually my head-cold went away and the head-aches stopped. But I know what I felt, and it felt wrong. However, head-aches aren’t objective events so I just had to let it go.)

When I arrived for the next session, I had to wait because another patient was in my tube and still needed to finish his therapy before I could go it. For some reason my wound care doctor came into the room and asked how I was doing. I shared my concerns about the surgery details and the JP-Drain. (A doctor has to be present in the office for HBO to take place but the doctor doesn’t need to be in the room during the sessions, a nurse has to be present the entire time in case of an emergency. They sometimes rotate in-and out.) He explained that the tube to the JP-Drain could be a variable length so most likely the tube would go down to my abdomen where the bulb (grenade) would sit. This made me feel better since I was picturing a bulb attached to my scalp.

I later heard from the surgeon that he recommended to have my hair trimmed. So I cut my hair short the day I got that message.

I don’t have all of the details about how long I’ll need to have the JP-Drain attached to the wound. Or what follow-up appointments with the surgeon will look like. I’ve been called by the hospital and given instructions on when to arrive and what to do and what not to do the day of the surgery. Paige will be there to drive me home. Past that, I have to let go what I don’t have control of.

After my first week of January 2023 I thought I’d be working in schools as a sub by late January latest, that date will have to shift again and I’ll have to make peace with it. How’s the saying go? “Time heals all wounds”?

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.

Continue reading “Limits & what a sort of early retirement is like”

The goal posts move, again

Update post

“I’ve been told’ve been told that all these ties would surely bind
And hold me tight
Hold me tight
‘Cause I’m hanging at the end of my own line
And I hope that all these ties will surely bind

When, oh when, will I be changed?
When, oh when, will I be changed?
From this devil that I am
When, oh when, will I be changed?

Josh Ritter, When will I be changed?

It’s been a rough roller coaster folks. I was planning on one of my pondering post (I’ll still get to it) but first I want to give an update.

Written from someone more cable of clear communication at the moment (Paige):

John had been growing steadily worse since [last] Friday. He had a previously scheduled appointment with his neurosurgeon on Monday, which was supposed to be our final check with him, but John did not do well on the neurological exam, so he had an MRI Monday night. The MRI showed increased swelling that is crossing the center line again

The neurosurgeon and radiation oncologist agree that John is still suffering from radiation necrosis, which is causing the swelling. Though the surgery cleared out as much as could be taken out, apparently some had seeped into surrounding tissue. The hope is that returning John to the highest doses of steroids for 1-2 more months will help that tissue heal on its own, now that the surgery cleared most of it out. If that does not occur after a couple of months, then we will have to consider other options. The Radiation Oncologist says that he has seen this play out in other patients, and most see significant improvement within two months. 

One of the hardest parts is that I was sure I was walking into an appointment that was going to grant me freedoms, not take them away. It’s also a return to scheduled pill taking, which I thought I was over with for the most part– steroids every 8 hours, including the middle of the night. Previously, I just had to take a dose in the morning and that’s it– I want badly to get back to that. It helped with sleep and daily routine very much. I don’t like living by the clock again, always within reach of a jar of pills.

Writing and reading bring me a lot of relief so that’s nice. I also think LEGO building is really helping my brain. There’s a passage in The Art of Learning by chess phenom, Josh Watskin, when he talks about playing twelve players simultaneously. Which usually wasn’t challenging for him (similar to scenes in The Queen’s Gambit) but inevitability someone would cheat and move pieces when he left the room and upon returning, it was the most confusing experience ever. Nothing would make sense until he pieced together that the opponent had cheated and that would make reality right again. The same thing happens to me sometimes in daily life, when I’m trying to get my brain right. But no one is cheating, it’s just life and it’s just my brain trying to figure things out again— I don’t like it. I don’t like that I can’t take a walk by myself or pick up my son and put him on my shoulders or carry my daughter downstairs when she’s sleepy and doesn’t want to wake up for school yet. I still can’t drive, wash my hair or cut it. But every appointment seems to push these events further out and not closer. The messaging from the doctors seems to get more murky, not clear. It’s suffocating. I’m not dealing with cancer, so sometimes the reaction from various doctors and centers seems to be, “What’s the problem?”

The steroids make me hungry and emotional– everything makes me cry including detergent commercials (“they got the stain out!”)I’m eating all the time. I’m the most I’ve ever weighed (“puffy John”). Exercise is out of the question at the moment. Diet is difficult when you can’t scan the grocery isles and be very selective about nutritious food. (keep in mind I can’t drive.)
I’m extremely grateful for everyone who has donated cash for take out of money for activities that help my brain like LEGO or craft projects– thank you so much. It’s really helping.

To finish up here. I don’t usually get extremely religious or preachy but sometimes you hear something you simply must repeat. My apologies if you find the below offensive or a turn-off. It’s my blog so I get to post it. Please move on if it doesn’t strike a chord with you. But denouncing Nazis shouldn’t be a difficult thing to align yourself with. I am writing this blog from my grandfather’s desk who was a POW in WWII and fought with his life against Nazis for the freedoms we have today. To watch some of us idly standby and dispose of accountability in the defense of an empty authoritarian leader who offers no truth and nothing but false promises is more than just heartbreaking, it’s a bridge to despair.
The following passage is from my pastor’s sermon 2 weeks ago. I don’t think many have the guts to get up and say this to a room full of diverse and unknown opinions so that’s why I think it bears repeating on my blog. Take it or leave it but don’t stand along side Nazis please.

“These unclean spirits traffic in hate and bigotry, racism and xenophobia, and are fueling a global rise in authoritarianism—sometimes called the new fascism— as would-be strong-men-and-women around the globe prey on the fears and psychological vulnerabilities  of people who are all-too-ready to believe and follow  anyone willing to entice them with lies and empty promises. 
This global phenomenon is like the religious cults of yesterday, only more powerful and infectious due to the pervasive reach of social media.These forces of death at work in America, and among American Christians, as the insurrection at the Capitol provided clear evidence.
These forces of death  are at work against the goodness of life, but Jesus has come, in word and deed, to stand against the forces of death. Now you may prefer that your pastor avoid these things in his sermons. And frankly, it would be easier if I did. And it would be easier to avoid talking about these things, if it weren’t for our fellow Christians who were carrying “Jesus” flags,  alongside Confederate flags and flags promoting violent insurrection, as they stormed the halls of our democracy, or displaying a “Jesus Saves” sign  alongside a gallows built to threaten our elected officials.
My Christian friends,  insurrection in the name of White Christian Nationalism fueled by lies and false conspiracy theories, is not the work or the word of Jesus.  It is the work of false prophets. 
Whatever spirit is possessing the White Supremacist mob  is every bit as unclean as the spirit possessing the man in the synagogue at Capernaum.  
Given that this past Wednesday was Holocaust Remembrance Day,  there is another rule of thumb that I should mention  on discerning false prophets and unclean spirits:  that is,  the presence of Nazis in the crowd.“Be they “neo-Nazis, casual Nazis, master race Nazis,  or the latest-whatever-…-Nazis… if they are on [one] side of the demonstration?  [That is] the wrong side.
It is tough to argue moral equivalence when…standing next to a Nazi.  Look to [the] right.  Is there a guy wearing a 6MWE (6 million wasn’t enough) t-shirt?  [That’s] the wrong side.  Look to [the] left.  If that guy is wearing a Camp Auschwitz t-shirt? Wrong side. Are speakers being applauded for referring to things that Hitler got right?  Wrong side.
The forces of death  are at work against the goodness of life… but Jesus has come, in word and deed, to stand against the forces of death. To the extent we stand in resistance to those forces, we stand with Jesus, and are following him. 
We have bronze plaques in our sanctuary bearing the names of Fourth Pres members who offered up their lives in the World Wars fighting against  these forces of death. May we find courage in remembering their sacrifice as we are called to stand against these forces of death— these same forces of death—today. God promised a prophet like Moses, saying  Anyone who does not heed the words that the prophet shall speak in my name,  I myself will hold accountable. Friends, the gospels proclaim that Jesus was and is that prophet.  And we all—all of us— will be held accountable to his words.
You know, these are difficult days. And it give me no pleasure to have to preach sermons like this. I long for the day when I don’t have to. But the gospel demands it.
The gospel calls on us to stand under the authority of the one who was willing, in both word and deed, to confront the powers that destroy life to call them what they are, and to speak a word that sets free  those who have been enslaved by the unclean spirits of the age. 
The gospel may call forth convulsions for those under the spell of the unclean, but they are convulsions  on the way to freedom. 
Friends, let us stand together  under the authority of the one who gives life to the world. Jesus Christ our Lord.
In him—in the Jesus we come to know by a careful reading of the gospels— the kingdom of God has come near; 
Let us all repent,  and believe the good news.

Struggles and some good news

Now I’m trying to mend my ways
I had enough of pain and bad will
Good enough for you someday
Till then, it’s a losing battle…

It’s always been in my nature to be the beast
Blame the maker but stay with me

Josh Ritter, Losing Battles

Hello everyone! I am glad to be back and writing again. I am pacing myself very carefully considering my strict screen / reading time limitations. I’ve been very eager to write and update but haven’t been able to due to those restrictions / limitations (post surgery was limited to five minutes a day of any screen time).

The second time has been much more of a struggle. The hospital stay was filled with lots of intense situations. My surgery went fine but protocol requires one night in the ICU. While I was there, there was no ICU room available so the hospital converted the post-op room into an overflow ICU. I was stationed there for one night, checked in on at every hour to make sure I was stable. The things that I heard and were happening in that overflow ICU. It was brutal. I had a perimeter of curtain drew around me so I couldn’t see anything (and really didn’t want to) but I could hear everything. Lots of moaning and suffering. The hospital staff was doing their best but you knew there were stretched too thin and worn down. Nearly everyone I talked to was on a temporary “floating assignment” and away from where they normally work. I overhead talk of how many nurses were calling in sick because they themselves had tested positive for COVID. Still, the nurses were there, holding the line, doing their jobs. It felt like a military situation in someways. I thought a lot about institutions (like hospitals and healthcare) and mission (this was more than just a job to these men and women– there had to be some higher calling and strong purpose to what they do everyday for their job). Even though the results were not A+, these men and women were holding it together by their own sheer grit. Still, being in the hospital, espeically the overflow ICU felt like being in a bomb waiting to explode and I wanted to get out of there (I can still hear the sounds from that night). I wore my facemask nearly all the time. One time Paige found me with my facemask and eyemask on (I brought the eyemask so I could sleep, the lights stay on in the overflow ICU 24 hours) I must’ve looked like a cross between Darth Vader and Bane, trying to sleep. I was very nervous about contracting COVID the entire time. At one point Paige had to take my facemask away so I wouldn’t try to sleep with it on.

One of the good things was how well I was doing post surgery. As opposed to the first cranitomy (or cranny as my neurosurgeon starting referring to them), I remember it taking a while to get “with it” and feel lucid. This time I was lucid and with it from the moment of waking up (still in the operating room!). I remember looking at my hands and pumping each hand to make sure I had motion on each side of my body…I did! Paige got to come back and see me and she was blown away on how well I looked and well I was communicating. My neurosurgeon talked with me and I got to hear how well the surgery went.
You don’t know this, but there was a strong chance they would find cancer when they opened me up again. At our consult at Wake Forest, the surgeon there said they find it, “a lot”, if they find it, they remove it. The also were installing “chemo wafers” on my brain in case there was ever a reoccurance. These “chemo wafers” are supposed to be especially good at treating melanoma. So when they operated on me, there would be taking a sample of my brain tissue, freezing it for 20 minutes, and running a short-term pathology to see if it was malignant or not. Any other samples obtained would be send to long term pathology which takes two weeks but would determine if the sample was cancer tumor or not (this was how I was first diagnosed with metastatic melanoma). Well, when I came to the first question I had for my neurosurgeon was “What was the path?” Response: “Necrosis. Dead brain tissue. There’s another sample sent to long-term path.” I knew what that meant– I wouldn’t know long term path for a couple of weeks. But in the short term, they hadn’t found cancer, only dead brain tissue consistent with necrosis. This was very good news!

Continue reading “Struggles and some good news”

My Survivalship Story Revised- and an Update

An update about this week

[A lot has happened this month. My last post discussed the timing of my needed urgent surgery. I was told that because of insurance reasons I would not know until the day before the surgery but they would go ahead and schedule it. So the surgery was scheduled for Tuesday, December 29th. Because insurance offices were already closed for the holidays, we would not know officially until Monday December 28th if it would be approved (even though it’s an urgent surgery I supposed their protocols require attention since the surgery would be before the end-of-the year). Well, I got the call and the surgery is on for tomorrow. The next time you see a picture of me, my hair will be a lot shorter. Tomorrow at 9am I report to the hospital for another craniotomy to remove the dead brain tissue. It’s been a difficult month and the anticipation leading up to this surgery has been brutal. The drugs I’ve been on to keep my brain swelling in check have worked well for my brain but my body is ready to surrender to the needed recovery that will have to take place over this next week. There has been a lot of anxiety, shaking, crying, and insomnia. It’s been hard to bare that during Christmas. I’m looking forward to getting this done, getting back home and recovering and starting to feel like myself again.

Paige is going into full caretaker-mode and will be my visitor during my hospital stay. We still don’t know yet how that fully works and won’t until tomorrow. I have some family driving up to see me but with COVID protocols it’s all a mess so we all just have to wait and see. It’s a lot of impossible situations.

Thank you all for your support and prayers. If you’d like to do something for me or my family during my recovery, please wait until I get home from the hospital and I’ll get the word out about what can be done (meals, etc.).

I plan on blogging during my recovery. From what I understand, my limitations and restrictions will be the same as before. So we’ll just have to see.]

Some news about the direction of the blog

I haven’t posted in a while. It’s not because I haven’t been writing. It’s because since the seizure I’ve been thinking a great deal about what I want this blog to be and some goals that I have in mind.

After a lot of thought and discussion with Paige, the wisest one in the household, I’d like this blog to start featuring survivialship stories. I believe there is a critical need for positive survival stories for those facing cancer or those who have a loved one facing cancer. I sought those out when I underwent my treatment and I clung to those stories like rosary beads. Even with my limited reintroduction to the world, I’ve heard other success stories in my own community and want to share them. I don’t want to focus on figures that can take private jets to the most advanced medical centers in the world for the best treatment. Rather, I’d like to focus on people and families you and I would come across in our daily lives. And there are so many stories. Cancer is not going away. But we keep surviving and it’s import to keep reminding ourselves of that. Our stories not only contain the heavy pathos and revelations that only those who’ve stood next to death can feel. But these stories contain details– details that may help you, or someone in your family who may be affected by cancer. If there’s even a chance that it helps only one person then let’s keep sharing these stories.

While thinking about where to start it became starkly apparent that my story had many holes in it to fill in. If you’ve read my blog since I start writing it in May 2019 and you read my original ‘My Journey’ page, then you read my experiences right up to the point of my first PET scan. I did not even yet know where the cancer was in my body and what my treatment might be. In the last couple months I’ve been working to fill in the gaps of the story. To tell my survivorship story from going to work as usual on a Thursday morning, discovering a malignant brain tumor later that day, to finding my tests results in late August that my brain and body were clear of any detectable signs of cancer. So it the most natural place to start was my own story.
I know many of you read the original post. This one is much longer and contains a lot more detail– but I promise you, this will help you or someone you love that has to deal with cancer and that’s going to happen to you at some point in your life. I’m sorry, but that is a reality.

And to be clear, my struggles are not over. But like chapters in a book, the revised Stage 4 Cancer Survivalship Story page is the story of my cancer survivialship, not my struggles with immunotherapy-induced hepatitis or my ongoing struggles with necrosis. But at 26,000+ words I had to break somewhere. And, many struggles with cancer end up being with side-effects of the treatment itself, which I feel deserves its own attention due to the detailed nature of what goes on in our mysterious bodies after we receive these amazing but still yet still nebulous treatments. As an expert melanoma doctor at Duke Cancer Center once said, “Sometimes, I fee like we’re still in the dark ages with these treatments.”

So here is my story again. It’s Rebooted. There are more details. Some dates have been corrected. Some original memories righted. Memory is a funny thing. I wrote what I remembered but it’s only after talking to family and reflecting on it more that I could recall that what I wrote was not actually what happened sometimes. For instance, my family wasn’t there in the ICU to see me wake up post-surgery. That’s crazy. Family wouldn’t be allowed in until I was awake, conscious, and stable. My mother didn’t leave my side while I dreamed I was dying and had an out-of-body experience. She was sitting right next to me because no one else was with me at the time. So, this revising my own survivorship story let me reflect on those details, and piece together our insane calendar of events that was the summer of 2019.

I’m eager to start gather more survivorship stories. Unfortunately, I think I’ll have to wait until I can sit next to someone at a restaurant and talk about their experience with cancer intimately for multiple hours. COVID times are not the best of times for cancer close talk.

I still intend to publish posts about my spiritual ponderings. I’ve added some categories (as if that matters to readers) for book reviews, reflections, survivorship stories, and updates. I still have yet to decide what to do with the “updates” section. I’d like to keep everyone who wants to be up-to-date with my health but I don’t want to overwhelm anyone or have redundant posts. Please reply with a suggestions.

The Hard Road Ahead

It’s been a while since my last update or blog post.

This is mostly an update. Sorry no picture for this post.

While Christmas approaches we have been through a lot and are about to go through a lot more.

I was in the hospital last week for brain swelling. It’s the worst I’ve looked and felt through this entire experience. I lost feeling on most of the left side of my body. I couldn’t use my left hand (I’m left handed). Hand-writing and daily tasks became extremely difficult. I needed a STAT MRI which showed radiation necrosis swelling in my brain. It was significant enough that it was pushing on the other side of my brain and creating another mass-shift– disrupting the center line of the two brain sides of the brain. The results were the same “whooshing migrate” headaches I felt in April 2019 but also the loss of strength on the left side of my body. This included my face. Paige said it looked like I had been to the dentist. I had slowly noticed this happening but I had conflated it with another issue (taper off of another drug). After my MRI result discussion I was directed to increase my steroid intake, which should also help with the control of the left side of my body. Unfortunately, by this time the swelling was so bad it was causing serve nausea and I couldn’t even hold down water. So every time I took medicine I threw it up. At an appointment at the cancer center they took a look at me and sent me to the hospital for IV fluids and IV steroids. In the meantime they made me an appointment at Wake Forest Hospital for a surgical consult about a less invasive procedure to remove the dead brain tissue from the necrosis, which would stop the swelling. The appointment was set for Monday 12/14/20. I would have to improve by then.

To review, in June 2019 I received stereotatic radiation treatment to my brain to kill any remaining cancer cells possibly left there after my tumor removal surgery. One possible side effect is necrosis, or dead brain tissue. We’ve since learned it appears 15-18 months after treatment which falls in this window. My radiation oncologist said I appeared to be a “text-book” case of necrosis.
It’s not cancer but it does have its own serious issues that need to be handled. We known that I would probably need to have a procedure to remove this tissue but previous appointments were optimistic that this procedure could wait until a various time in 2021, possibly after COVID numbers went down. At the same time they also proposed a less invasive procedure called Auto-LITT that showed a potentially incredible recovery time. Two of my doctors recommended Wake Forrest for the procedure. A consult was set up for next Monday 12/14/20.
My hospital admission was set up with the express goal of getting me healthy enough in time to a surgical consult at Wake Forrest to evaluate me for this procedure.

Continue reading “The Hard Road Ahead”