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.
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.
(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”?