From a Thursday morning to Stage IV Metastatic Melanoma
I woke up on Thursday, April 18th with a headache. I had been having headaches for two weeks. I can even pinpoint the precise day and time it began–2am, Sunday, April 7th. I was excited about going to church and hearing the lecture series for Sunday school. Instead, I woke up at 2am with the most painful headache I’d ever experienced. “This is what a migraine is like,” I thought. I watched the hours slip by thinking that I just needed to get to 6am and then I could drive to Walmart and buy some advil. I had been taking a lot of advil lately, but I thought that was related to stress at work, since I had been putting in time at nights to attempt to get a project out the door. Our house was out of advil, and I had left a bottle at the office. What’s open right now? All I could think of was Walmart. I remember at one point I tried a mindfulness trick of going with the pain– just allowing it to happen. Man, did that backfire! The pain became searing and provided no relief. At 6am I woke up my wife and explained I was going to Walmart. She was confused but relented. I didn’t make it to the stairs before I had to run into my kids’ bathroom to vomit. Avoid reading if it’s too much information, but it was all green bile and no food whatsoever. It felt like hell. When I vomit, the whole house hears it. I feel sad when I do because I know it traumatizes my kids (Well, at least Mina. Will probably isn’t old enough to care.) Paige came to calm the kids and put me to bed. She would go to Walmart while I rested. No church, no lecture series today unfortunately.
Monday, April 8th was the first day of Spring Break. Paige and I had worked out a carefully crafted schedule of splitting kid duty for Mina, our 7-year-old daughter in 2nd grade. I was to take her to work with me on Monday and Wednesday, and then Paige would take her on Tuesday and Thursday. On Friday, they were all going to head to Columbia to celebrate Paige’s mother’s birthday. Monday morning I woke up (headaches starting at 6am, so at least a little more sleep) and started to pack lunches for the kids. Bagels with cream cheese and jelly are a staple for kid lunches. I had it all laid out and the cream cheese spread on the bagel, and something about the food and the smells got to me. I vomited in the sink. Will was eating breakfast watching me, asking “What Dada doing? Dada? What you doing?” Again, no food. I didn’t make it to work that day with Mina. I did drive in to grab my stuff with the intention of working the afternoon or that evening, but the day was spent with me laid out on the couch and Mina binging episodes of Trolls: The Beat Goes On.
Tuesday came and went. I went to work, took 3 advil for the headaches and thought nothing of it. The only thing notable about Tuesday was that we all went out to Jason’s Deli for dinner, and my wife’s car got a flat tire before getting out of the parking lot. We had a heck of a time changing it but finally did (we thought the wheel was locked onto the axle with special wheel locks– it wasn’t), and I got home and got to sleep a little after 9:30pm. Strangely, no headaches during the whole flat tire incident.
Wednesday was a pretty typical work day except that I took my 7 year-old daughter (Mina) with me to work. Equipped with an iPad, she sat in my cube and binged on episodes of Lego Ninjago until the iPad died around 5pm. The headaches were there, but I was taking 3 Advil regularly and it seemed to be helping. I got some hot soup for dinner (which seemed to help) and headed home. I informed my family I was very tired and going to take a very passive role in the bedtime routine that night. I ate my soup (maybe too fast) and then got sucked in the vortex of putting a 7-year old and a 3-year old to bed.
My son doesn’t do very well at bedtime, but I had discovered a trick. His recent obsession with Batman had him asking for “Batman in the blue suit,” meaning [big sigh] Adam West Batman. Well, I would go to youtube and find some videos of Adam West Batman (and Batgirl— one of his favorites as well) doing their cheesy precursors of pro-wrestling. We’d watch for 10 minutes, and he’d acquiesce to 10 minutes of cuddles with me, and I could leave in peace and he’d go to sleep.
Tonight was different. I was holding my phone and watching this Adam West Batman video. We were lying there in bed, and I had my arm around him. The video was playing, but it didn’t feel right to me. The screen would flash up with the solid color background and large letters: BANG! And then again: POW! SMASH! BONK! BIFF! It was all too much. I was feeling nauseous. I told myself I ate my soup too fast. Then all of a sudden, it hit. I threw my phone down and did my best to make it to the kids’ bathroom. I got to the bathroom but didn’t get to the toilet in time. [graphic] I projectile vomited everywhere. Again, it felt like hell. But was this different? This was food this time. Paige turned to me and said, “Alright, enough. I’VE GOT THIS. GO REST NOW.” She handed me two towels and sent me to bed. I could tell by the tone in her voice that this was a time for listening. I went to bed and fell asleep quickly while she cleaned and cleaned and cleaned.
I woke up the next day feeling good. I came downstairs and saw the shower curtains hung on the stairs to dry after they’d been cleaned. Man, she did everything! This was Thursday. Paige was taking Mina to work and then going to an Easter celebration at Will’s school. I was heading to work solo and planning on grinding on a project until it got out the door. “You should stay home and sleep for the morning,” Paige suggested. But I felt good. “I’ll take a long lunch and come home and rest.” An 11am to 1pm nap time ought to do it, I thought.
I went through my usual morning routine. Got showered and ready, then dropped Will off at his school, and then commuted in. I set to work and quickly started to watch the clock for when I could go back home and sleep. Sleep seemed to be the only thing that made me feel good. The hours crawled by, and despite my determination, I kept running into road blocks on my project, not progressing. Paige called to check on me, and I told her I was counting the minutes to 11am.
I have a friend who is a primary doctor in Asheville. At one point he told me one of the reasons he became a primary was to help out friends and family with questions. I had texted him what I was going through off and on. He reached out to me with a text:
DR: “How are you doing?”
Me: “Hmm. Up and down. Mostly down. Sleep seems to be the best thing for me. I threw up a ton last night.”
DR: “Ugh, somethings not right. Did they do labs?”
Me: “So what should I do? Go to an ER and ask for labs and a head scan?”
He immediately called me: “Make an appointment with your primary as soon as you can. Push for a head scan through them. They can set it up an as out-patient procedure and it’ll much cheaper than going to the ER and waiting.”
Ok. I called my primary at 10:30. “Are you close? We have an 11 o’clock cancellation.” Well, there went my nap time.
I went to the 11 o’clock appointment and saw my primary doctor’s physician’s assistant. I had seen her before and knew she was very good. I also felt lucky to get an appointment so quickly.
She sat me down, read my file, and pulled a paper towel out from a paper towel dispenser and started to write on it. “Ok, start from scratch. When did all of this start?”
She jotted down notes as I told my story. At one point she stopped and said, “Ok, I think you need to get a head scan. It would make me feel much better, if anything, just to rule other things out.” I told her I was very relieved to hear her say that and that I was actually going to push for that if it wasn’t suggested. She left the room to make arrangements. “Did you eat or drink anything this morning?” “A few sips of water— that’s all.” I was still unsettled from nausea episode the night before that I didn’t have any breakfast, even though I’m a daily breakfast eater. That worked. There was a 1pm opening for a CT scan. I had to head to the outpatient center at St. Francis Eastside (next to the ER) and wait until 1pm. Go early to get paperwork done.
So I arrived at St. Francis Eastside at noon to fill out paperwork and wait. TVs were all around and I just wanted to escape from them. I found a quiet chair that wasn’t facing a TV and tried to close my eyes. They called me into a back room to ask more insurance questions and see if I could pay for the CT scan before receiving it. I tried my luck with our HSA card, and it went through (in case you’re wondering, a CT scan is $715 after insurance).
The CT scan itself was very quick and easy. I didn’t even have to empty my pockets, which I found a little strange. I laid flat on a plank and it moved me up and down and then in and out of a room-sized machine with an empty body-sized hole in the center of it. The whole process took 60-90 seconds. The nurse informed me that since this was a STAT order that I needed to wait in a waiting room for the radiologist to review the results quickly. After that, I could go home and wait for my primary doctor to call me with the rests. The radiologist actually came out and asked, “No car accidents or anything? No hits to the head recently?” I hold her no on all accounts.
The nurse escorted me to a waiting room that was empty. It was darkly lit with plush leather chairs. There were Bibles on the end tables. A TV was there and on, but I reached up and turned it off. I grabbed a Bible and tried to find one of those short Pauline epistles like Jude or Titus. I usually don’t like Pauline stuff, but some reading I’d done recently had me giving him another chance. I sat there and waited. 5 minutes. 10 minutes. 15 minutes. The nurse reappeared,
“I need to take you to the ER to be registered right now.”
Well, this isn’t good, was my first thought. I silently followed her. I didn’t ask her any questions. What was the point? I was going to be seen by someone in the ER who would tell me what was going on. The waiting wouldn’t be good, but it would come and go. She took me to the registration window in the ER, told the receptionist my name and birthday (an invocation to be repeated over and over and over during the course of the next 9 days) and I took a seat and waited to be called back. After 10 minutes I walked outside and called Paige. There wasn’t much I could tell her except I was waiting in the ER because something on the scan necessitated it. She wanted to come immediately to the hospital, but I told her to please go to Will’s Easter celebration. There was nothing that could be done here in the ER for me. Not yet at least.
While I sat and waited, my primary doctor called me. She apologized for not getting back to me sooner. The hospital had called while they were on lunch break. She explained that the scan found a 2.4 cm mass in the right frontal lobe of my brain and that they wanted an MRI to get a closer look at it. She asked if I had any family in the area she could call. I said no. Could she call my wife? At first I said no, but then I thought about Paige’s ability to remember things I couldn’t. My engineer brain is not as good as her professor brain. I took her up on the call to my wife. She called Paige and told her that her husband had a brain tumor and needed an MRI. Paige was driving down Woodruff Road with our 7-year old daughter Mina, heading to a 3-year old’s school Easter party when she got the call.
I was finally called back in the ER. A nurse sat me down and took my vitals— temperature, blood pressure, and oxygen level. This would also become an invocation to be repeated over and over and over during the next 9 days. The nurse explained to me that I had a brain mass in the right frontal lobe of my brain and the problem was that it was swelling and causing it to push on both sides of my brain. They wanted to MRI to know more. She explained they were working on a room for me here and a doctor would see me when I got into a room.
At this point I’m texting people. My brother. My attorney friend who was working on power of attorney and my living will. But not my parents. Not yet. They were returning from a long trip, and I knew they were looking forward to getting home, and with my Mother’s multiple sclerosis, I knew it would be challenging to get to Greenville after already traveling across the country. Once I called them, I knew they would have to turnaround and fly or drive 500 miles to get to me. My phone was dying. People were trying to call me. I directed them to Paige because I didn’t want to lose my phone so I could call or text Paige. Thank God for text messaging.
They readied a room for me and a new nurse started to take care of me there. She was warm and welcoming. A calming presence. She took my vitals and hooked up an IV into my right arm. She explained that they would give me a steroid to stop the swelling on the mass soon. She left and an ER doctor came in about 10 minutes later. The ER doctor introduced himself and explained that I had a mass in my brain that was about 2.4 cm large on the right frontal lobe. It was swelling and pulsing and pushing on both sides of my brain, causing a “mass shift” that was leading to my migraines and vomiting. I held eye-contact and nodded throughout his explanation. He stopped. “You’re taking this very well,” he said. I told him that was because my wife and kids weren’t there with me. But really, what was I supposed to do? Start ripping apart the medical equipment and throw stuff around the room? No one had told me anything I thought was disastrous yet. He informed me they were going to move me to their downtown hospital that had the neurology unit. They would do an MRI to see what they’d be dealing with. I asked him about operability. He deferred to the neurosurgeons, but did say that since it was right frontal lobe that it appeared to be easy to access (as opposed to deep in the center or back of the brain). I asked him what would’ve happened if I had never gone to the doctor that day. He said that my symptoms would have progressively gotten worse and I probably would’ve had a seizure or something other significant event that would’ve hospitalized me.
Thank you Asheville Doctor buddy for telling me to go to the doctor today.
The ER doctor gave me my first of many neuro exams. “Grab hold of my fingers with each hand. Push. Now pull. Follow my finger with your eyes. How many fingers am I holding up? Can you feel this on your foot? What about this foot? Can you feel this on your face? What about this side? Push on my hands with your feet. Now pull toward yourself.”
He left and told me I would be taking an ambulance ride to the downtown hospital. I pushed back and asked him if I or my wife could drive me. I was thinking about expenses. He told me that in the big scheme of things the ambulance ride wouldn’t be the big ticket item, and I agreed. He still said he’d ask the hospitalist and left.
After about 20 minutes of waiting the hospitalist came to see me. She gave me a neuro exam and repeated the same information. She told me she would not be comfortable with me or anyone else driving me in case something happened and that the ambulance ride should be covered since they were moving me to a facilities that had resources they didn’t. She looked me in the eyes and said, “We’ll be praying for you,” and my heart sank. This woman was tough as nails. The appeal to religion don’t boost my spirits, but made it sound like my chances were more of a Hail-Mary football throw.
The hospitalist left and the warm nurse returned. She boosted my spirits and told me the ambulance people were coming very soon. She said some encouraging things about brain tumors and getting them removed and cited a case in her own family and told me not to worry about what the hospitalist said. She took good care of me. Ironically, I had brought a mouse book with me, Notes on Nursing: What it is, and it is not by Florence Nightingale. This woman knew what nursing was.
The ambulance crew and Paige arrived at the same time. We discussed how the move would work and how Paige would follow. The ambulance crew tried to calm our nerves by explaining how well equipped the ambulance was. They put me on the ambulance gurney and started to wheel me away. This is when I knew I was in for it. There was no turning back. No getting into my car and going home. No sleeping in my own bed. No kissing and hugging my children good night. I was in mild shock, but these thoughts were occurring to me.
We arrived at St. Francis Downtown with no problems (besides a concert at the Bon Secours Wellness Arena that made us take a detour and threw Paige for a loop. What was the concert? I just looked it up. It was Casting Crowns on the Only Jesus 2019 tour). I could lean up from the gurney and see Paige. I waved to her. Then I thought, I shouldn’t do that. She’ll think I’m in trouble. I was trying to be fun, for whatever it was worth. I made conversation with the ambulance crew. They were friendly and had lived through many stories— good and bad. They wheeled me to my room on the 7th floor (the neurology floor) and left. They did a good job.
A nurse named Allen helped me get set up in my new “home.” I had to completely undress and put on a hospital gown. I had to wear special thick socks with raised grips on them for fall prevention. I had to wear special leg braces that pumped air in and out of them to prevent blood clots. And I was now tethered to my IV drip. Any movement I made would have to have the IV come with me. The nurse agreed to get Paige a chair and some blankets for her arrangements. Paige was being wonderfully supportive of me. “Well, didn’t we say we needed a night away from the kids?” I joked.
Paige’s sister dropped everything and drove to Greenville from Columbia to take care of Mina and Will. She had arrived and had them bathed and in bed. She is an amazing woman. I am so grateful to have extended family like that.
Nurse Allen informed us that the MRI would be tonight but that meant I couldn’t eat or drink anything. I was craving water and very hungry at this point. I hadn’t eaten or drank anything all day, and these tests needed me to keep away from food and drink. Soon enough hospital transport showed up and wheeled me down to the MRI room.
An MRI is a big machine that fills up a room. They put a big plastic mask on you (close your eyes unless you like claustrophobia) and slide you into the hole in the center of the big machine. You lie there for about 30 minutes while loud sounds occur around your head. It sounds like 90s-style dial up internet connection noises. An MRI nurse said jackhammer noises. Anyway, it’s not a great time. I did my best to meditate or count the number of seconds to the minutes they said it would take. (They did talk to me through a speaker and give updates like, “5 minutes left.”) Once it was done I would have to wait for hospital transport again to take me back to the room. They arrived shortly, and I was back and could finally eat and drink water. It was fantastic. Water never tasted so good. We called a local restaurant and had them deliver a couple sandwiches. Those tasted amazing, too. We even turned on Jimmy Kimmel to laugh a little bit. Paige was surprised I was going for all of this stuff, but I wanted to feel normal.
That night of trying to sleep was the introduction to the phenomenon of “hospital sleep.” Every 4 hours someone would come into check my vitals. I did my best to greet them by name and cooperate. Around 3:30am someone would come to draw blood out of my left arm for labs. I do not do well with blood draws due to a bad experience 5 years ago or so. I came to dread the hours between 3am and 4am. My typical routine would be to fall asleep between 11pm-3am, then lie awake from 3am to 5am, then drift back off to sleep after 5am and wake up around 7:30am. I would take a wash cloth and soak it in water, ring it out, fold it and put it over my eyes. This helped keep the room dark, even with interruptions, and it also helped to soak up the tears when I got emotional— which would be often.
Paige and I also learned all of the noises of the hospital after-hours. Every once in a while my IV would run out and start beeping. We’d page a nurse. Sometime my leg wraps would not be plugged into the air flow device correctly, and it would beep. We’d page a nurse. When I had to go to the bathroom, I’d have to wake Paige up so she would make sure I made it to the bathroom and back to my bed safely. We learned the outside noises, too. Sure, there were times when the nurses would talk to each other across the hall— that was to be expected. But there were these very loud, high-pitched up-and-down noises that sounded every 20 to 30 minutes. I called them noises like “slot machines from the Flintstones.” We learned they were actually bed alarms from when other patients were trying to leave their bed and escape the hospital.
Friday morning a knock on the door came, and a younger doctor, wearing a antiviral face mask, entered. He introduced himself as my neurosurgeon and explained the mask was because his 18-month old son had a cold. He explained that I had a 2.5cm tumor in my head that needed to be biopsied. They were going to schedule a surgery and perform a craniotomy. Open up my skull, get a sample of the tumor, put a titanium plate over my head, and patch me up. Right now it looked like the surgery would be on Tuesday, April 23rd. (This sounded like forever away. It was only Friday, April 19th.) He explained the possible side effects of the anesthesia and brain surgery— I had never been hospitalized or put all the way under before (except for a quick wisdom tooth surgery as a teenager). The possibilities included death, coma, brain damage, vegetative state, he explained very matter of factly. We asked about the possibility of a 2nd procedure needed to remove the tumor, and he answered that it would depend on the pathology, and unfortunately pathology takes 5 days to 2 full weeks— “Those guys work bankers’ hours,” he said. He off-handedly mentioned that he himself had had a brain tumor in his right frontal-lobe that was successfully removed. He needed to move on to finish his rounds but explained he would stop back by before the end of the work day. We thanked him and sat in silence as he left.
Immediately both of our thoughts were running wild. People were already suggesting we get a 2nd opinion or just pack up and go to a more prestigious hospital like Duke or John Hopkins. To us it didn’t make sense to pack up and go somewhere just for this biopsy procedure. We were already in line here, and we didn’t want to start somewhere else. Tuesday already seemed like an eternity away. But we knew we had to get things nailed down. I would need to see the kids. We would need to get the living will and power-of-attorney figured out. We would need to discuss finances and final wishes in case of the worst. We took it all very seriously.
Breakfast never came that morning. But I was scheduled for another scan. They wanted a CT scan on my chest and abdomen area. Hospital transport wheeled me down to the ground floor and deposited me into a room with 6 curtain partitioned areas. A technician was working in the center of the room, entering data while an old lady was yelling at him and threatening to throw up if she didn’t get a pillow— no, two pillows right now. It angered me to listen to this old woman complain. I did not say anything, but I was upset that she mistreated this technician. Eventually, they wheeled me into the scanning room. This scan was easy. I just had to stand up while a rectangled-shaped device scanned my abdomen up and down twice. Done in 2 minutes after 30 minutes of waiting. Then another 15 minutes of waiting for hospital transport.
Back in the room I tried to live as normal a life as possible. I wanted to shower and shave. Paige took down a list of things to bring from home. I got a shower, I got a shave. I opened the shades and sat in the sunlight for a while. I felt good. Nurses came in to check my vitals and give me drugs through my IV or pills for me to swallow. I was on a steroid to stop the mass from swelling. I was on a anti-seizure pill. I was on an IV injection to ease digestion. I took everything in like a good little boy. I was actually feeling great. No headaches. No nausea. No vomiting. But the surgery was looming, and there was a lot to get in place before Tuesday.
I didn’t want the TV on. I wanted as much natural light as possible. I sat in the sun as much as I could in my 7th floor room. For times when I wanted to sleep, I read fiction. I had started Charles Dickens’s David Copperfield a year ago and found it comforting to pick it up before a nap or bedtime. The Kindle app on my phone came in very handy for this. The night-vision feature softened the light so that it dimmed to a natural yellow color. I could read this without waking up Paige. I did a lot of reading of David Copperfield when I couldn’t sleep and Paige always said she had no idea I was even up. The only ominous thing about it is that the Kindle app measures how fast you turn pages and gives you an estimated time of completion in the lower right corner. 10 hours and 48 minutes left. It felt like it was my life clock counting down.
For my non-fiction reading during the day I began Richard Rohr’s Falling Upward. This book was and continues to be extremely influential to me, and it spoke directly to the experience I was going through— letting the first half of my life die. The book is subtitled A Spirituality for the Two Halves of Life, and even though the book draws heavily from the Christian tradition, Rohr also draws on Jungian archetypes and other spiritual heroes such as Odysseus and his journey. The book spoke so powerfully and directly to me. I kept telling my friends about it. I was underlining it and it seemed like I was underlining every other line. Here’s a sample:
“I have lived much of my subsequent life like a man without a country— and yet a man who could go to any country and be at home. This nowhere land surprised even me. I no longer fit in with either the mere liberals or the mere conservatives. This was my first strong introduction to paradox, and it took most of midlife to figure out what had happened— and how— and why it had happened.”
-Richard Rohr, Falling Upward
My parents arrived Friday afternoon. They had left in early morning and drove straight through. 9 hours in total. They were glad to see me and see what good care Paige was providing me. They were eager to tell me how many people were praying for me. I tearfully told them that I was determined not to leave this hospital “in a box.” Imagining the horror of losing one of my children before my own demise, I was not going to let that happen to them either.
After a couple of hours, my parents left to check into their hotel. My pastor came for a visit that afternoon. I had some questions for him. We chatted about meditation and he recommended (as long as I like British accents) an app called Buddhify. He showed me its layout, a wheel-based visual that opens up different subjects when pressed. I liked it. I also tasked him with providing me with the names of three therapists that I could choose from. I knew I was going to need therapy if I got out of this. He promised to send me something and then prayed with us before leaving.
Friday night came and went uneventfully.
Saturday morning my parents and Paige greeted me early. My Dad likes missions so I gave him a special one— bringing me my favorite cup of coffee. My favorite coffee is a flavored brand produced by a local roaster named West End Coffee. They have a “Jamaican Me Crazy” flavor that’s a blend of caramel, kahlua, and hazelnuts. They use oils during the roasting process to produce the flavor— not mixing heavily sugary syrups in the coffee when serving.
My Dad came back with the coffee and a story. He found the little coffee house easily but tripped over the name of the flavor. He confessed that he was on a “mercy mission” for a cup of his son’s favorite cup of coffee and that he was in the hospital. The barista noted that none of the carafes out there had that flavor but asked for one minute. He then went and opened a brand new bag of Jamaican Me Crazy and made me a large cup of coffee. “What is your son’s name?” He ask. My Dad told him and he replied, “I will pray for him.” This surprised my father because he was judging a book by its cover— the barista must have been a bona fide hipster. When my Dad tried to pay, the barista refused to accept it. My Dad left the money in the tip jar for whoever needed it. I have to admit that this story of the praying hipster barista and his act of coffee kindness did help me. I repeated it to family members time and time again.
It sounded so small, but coffee and kindness are so important.
Sunday was Easter morning. Paige really wanted her sister Amy to be able to be home for the morning to enjoy Easter with her family. Amy had been watching our two kids since Thursday night. She had taken them grocery shopping (even letting them sit in the big race car buggy, which we never allow), played with them in the backyard, and sent us videos and pictures of our clean and bed-ready kids telling us “goodnight and love you.” We arranged for my parents to be there early Sunday morning and they would watch the kids for the entirety of the morning until Amy could return. As part of it, my parents would be overseeing our kids finding their Easter baskets and goodies. During all of my drama, Paige and Amy were still finding ways to decorate and get the kids well-stocked Easter baskets for Sunday morning. The morning went well, and the kids were excited to get their Easter baskets and eat a little bit of their chocolate bunnies. My parents succeeded in getting them dressed and ready for the day, and that evening Amy came back to take charge of full-time parenting once again.
During this time, Paige and I streamed the Easter church service from a laptop in our hospital room. It was a good service and it was good to see my church. We have a series of stained glass windows and the sun was shining through them— even on a small laptop screen over video they looked luminous.
For Easter, Paige and I had one idea that we wanted to happen. We usually go to church and then take pictures of the family at the church garden. Obviously that wasn’t going to happen today. But we had a family photographer (who we had first found on Facebook years before) and wanted to see if we could get her for just 15 minutes to snag a family Easter photo. She agreed. The hospital staff was great and allowed me to unhook my IV and go outside for a picture as long as I didn’t leave the property. I got all cleaned up— shave, shower, and well-coifed hair. Paige had brought me a nice outfit from home. The kids were dressed in Easter season clothes and looked great. It was overwhelming, but I wouldn’t become weepy about it until hugging them good-bye after the photo shoot. The photo session itself was a little dicey but we managed to get some eye contact and smiles from Will, which is usually impossible. There was some sibling rivalry between Will and Mina that caused some tension, but we were happy with what we got in 15 minutes— we actually think the shorter duration helped us get better pictures. As a result of this photo shoot, we got one of my favorite photos with me and the kids. It was an Easter treat for me and Paige. I hugged and kissed the kids goodbye and enjoyed the fresh air while I could.
Monday morning I woke up early. This was the day before the surgery. A lot needed to get done. My neurosurgeon greeted us around 8am. He informed us that the surgery was scheduled for late afternoon or early evening tomorrow. My heart sank. I had all confidence in him but didn’t want to be the last surgery of the day when everyone was itching to get home. The surgery duration would be a window between 3 to 5 hours. The would perform the craniotomy and take a small sample of the tumor. They would take 20-30 minutes to freeze the tumor sample, cut it into small slices, and perform a mini-pathology during the surgery. If it was possible, they would then remove the tumor. If not, they would just proceed to the process of putting a titanium plate on my head and seal me back up for the tumor to be removed later. I mentioned how much work we had to do and how many goodbyes we had to say. He stopped me, “No one is saying goodbye. We are just going to take a look inside and seal you back up. No goodbyes.” Through tears, I told him I understood.
The first child to visit me was Will. Paige had decided not to take him to daycare that day so we could work in the visit and not split the day into awkward chunks. He came in with his batman t-shirt on and gave me his get-well card, which brought tears to my eyes (and is currently on my closet door). He asked about my haircut and when it would be. We told him tomorrow. We spent about thirty minutes together watching Sesame Street on the ipad— his request. It was the episode where everyone goes to the beach. We were supposed to go to the beach this summer and both kids were very excited about it. All I could think about was how that was not going to come to pass now. Whether I got through the surgery or not, the money was not going to be there for the trip we had planned.
Will became restless after the show ended. I snapped some pictures and Paige took some pictures of us together, but he was starting to fuss. I had to call it. With tears streaming down my checks, I said goodbye to him and hugged him deeply. Paige took him away and I hurried to my window and watched him walk with Paige. I snapped some pictures with my phone. They got into the car and drove off out of my field of view.
Next we had arranged for Mina to get out of school early for a visit with me. She was excited because she got out of school and knew she would get some treats out of this. I greeted her with a big smile when she got to my hospital room, and she also gave me a get-well card that brought tears to my eyes (it’s also currently hanging up on my closet door). We had explained that Dada was going to have some surgery and he would look different next time we saw him. He would have a haircut. She was nonplussed and asked what else we could do. I had one last Easter gift to give her. The complete series of Avatar the Last Airbender on Bluray. We would watch the first episode together there in the hospital with her sitting beside me on my hospital bed. We had spent the winter watching the complete series of The Legend of Korra. It was some of my favorite moments with her. She was completely engaged by the show. We would cuddle together and she would love watching every second, always begging for just one more episode. She would laugh when they had a joke on the show, she would feel anxious during dramatic moments, she would question why characters acted the way they did sometimes or have her own theories about what would happen next. She was the perfect age for this show.
Afterwards, Mina starting getting the Avatar the Last Airbender graphic novels from the library. She would devour these and want the next one immediately. I watched her become a voracious reader before my eyes and it was in a universe where bringing peace mattered more than winning a war.
Both Avatar and Korra are both very spiritual shows. In Korra, the titular character is constantly failing. Her ego and eagerness block her from understanding herself and her role in the world she is trying to help. At the end of season 1, she loses all the extraordinary powers that made her the Avatar. She collapses and sobs. In a vision, a past Avatar appears to her and tells her, “When we are at our lowest point we are open to the greatest change.” She becomes enlightened, finding her past selves, and regains her powers again. This show still speaks to me on a spiritual level even as a 38-year old adult. There is so much to love about this series.
“When we are at our lowest point we are open to the greatest change.”Legend of Korra
We sat and watched the first Avatar about Aang— a very young and silly boy coming into his gifts amidst great conflict in the world. It was definitely more kiddy than Korra but that was fine. Mina was still hooked. The show ended and it was time to say goodbye. I asked that she please smile pretty for pictures, which she hated doing. I held her to me and hugged and kissed her. We got a good picture of her doing her “crazy happy” face. I said goodbye and watch her leave, and I cried. As soon as she left, I rushed to my window that overlooked the parking lot. After 5 minutes or so I saw Paige and Mina walking to the car. I took pictures with my phone and then watched as they got in the car and drove off past my field of view.
That was it. I sat in silence. I had just said goodbye to both my children.
While Paige was gone, I started recording audio logs for her, Mina, and Will. They were full of advice and what I was going through and how much I loved them and how proud I was of them. I recorded a loose narrative of a story that I made up to put Mina to sleep when she was 4 or 5-years old. It’s called Henry the Goose and it’s about a Canadian goose and his adventures with his other geese, a dog friend, a hawk friend, and a bear friend. Eventually the villain, Feaster the vulture, shows up and they all have to band together to defend their home, the pond. I had always wanted to draw pictures together with Mina and make it into a little book made of construction paper. I didn’t get to do that, but I thought the audio log would be my best chance at recording any of it.
The rest of the day and night were full of reviewing “house-in-order” items with Paige. Finances. Will / estate planning. Medical power-of-attorney. Life insurance policy. I told her where to spread my ashes. I talked to my parents about how they would need to step up and help assist Paige whether it’d be financially or with childcare help. I told my parents Paige would need help navigating the hospital bills and not to let my hospital bills hurt the future for her or the kids. They agreed.
Paige and I spent Monday night together in the hospital bed. Even with all the interruptions, we didn’t mind. We kept each other close and warm. We both slept.
I imagined that she was Superman, and I was the sun. I was giving her superpowers by holding her close and keeping her warm. And she was the superhero who was saving me everyday.
Tuesday morning started with the usual vital checks and breakfast. Then they told me they wanted me to have another MRI in the morning. Same routine— wait for transport, go down to the MRI room, go through the claustrophobic 90s internet dial-up sound for 20 minutes and finish, and wait for transport back to my room. I tried to meditate the entire time.
Some friends were calling me, and I did my best to speak with them but my time was running out. A nurse came in around 9am and told me I had to give myself a sponge bath specifically with the materials they provided. I starting doing that and at 9:30am they came to get me for pre-op. The 2nd operation of the day had been cancelled, and I had been moved up in the order. I was now going into surgery.
Pre-op was not what I expected. It was a small crowded room filled with a lot of anxious staff. I had two nurses tending to me. One was very warm and accommodating, and the other was warm but had an air of concern about her. My parents and Paige were allowed into Pre-Op to be with me. I thought they were going to shave my entire head right then and there, but that never happened. They gave me a pill to “calm my nerves.” I urinated in the restroom one last time after waiting for one to open up. My parents were holding my hand, and Paige was massaging my shoulder. The moment was coming soon.
The nurse anesthetist showed up and introduced himself to everyone. He explained what his role would be and what he would be doing to me next. He was warm and friendly. He assured me that he would be there the whole time monitoring everything.
The moment came when it was time to wheel me into the operation room. I had to say goodbye. I told my parents I loved them and was so thankful for everything they had ever done for me. I told Paige how grateful I was that I had the chance to spend such a wonderful life with her and our two beautiful children.
I told her that if anything bad happened that she just had to look for me playing with Athena, our 12-year boxer we had to put down 6 weeks earlier. I would either be playing with her in a field or cuddling with her taking a nap somewhere— come and find me there.
I think the “calm the nerves” pill hit as soon as I was rolled away. I made conversation with the nurse anesthetist, but I was obsessed with the horrible thought of soiling myself. I kept telling him how I really didn’t want that to happen and it shouldn’t be anyone’s job to clean that up. He smiled and assured me that it happened sometimes and it was alright. I told him that my father would clean it up if it happened, that we spoke previously and he said he would (this is true). He laughed and told me not to worry, it would all be okay.
I had worked with someone whose wife is an nurse anesthetist, so I tried to play the name game with him but we didn’t get anywhere. I ended by saying, “They just had a baby boy almost a year ago.” “That’s great!” He replied.
The operating room was not what I pictured. It was cramped and low. There was a dry erase board on the right side of the room. My name was on it, but my birthday was wrong. I asked the nurse anesthetist if I could be particular about something–that the birthday on the dry erase board was not my birthday. Your name and your birthday are your keys to everything in a hospital. Having 50% of it be wrong was bothering me. They erased the old birthday (a 1959 date of birth) and replaced it with mine. I felt better, I guess. The nurse anesthetist placed a breathing mask on me while putting in an IV. He told me to take some deep breaths. That was it. That was the last thing I remembered.
I woke up and my family and Paige were all around me. There were so many people from my life. Had I died? (Of course I had died!)“There he is!” My eyes opened and I registered the people and things around me. I was in the ICU and would be spending the night here.“The surgery was a success. They removed the tumor. It’s gone.” I can’t even remember who told me. Probably Paige. I felt happiness.
My head felt heavy. Something was on it. Someone took a phone and showed me what I looked like. I had a heavy bandage wrapped all around my head. It looked like a turban. “I’m a Sikh!” We had just had a Sunday school lecture studying sikhism, and it was incredibly powerful. We had watched clips of a short film called American Made about a Sikh family who becomes stranded on the side of a desert road and needs help. The turban becomes a sources of conflict in the film— dividing father and son. But I would gladly call myself a Sikh and wear a turban proudly. My pastor reminded me that a Sikh would have very long hair, past the shoulders, that the turban would hold up, and I did not have that hair. It was true. I assumed I was completed bald but had no idea what I had under that heavy bandages.
There are a few more things that I “first said when I woke up.” It’s become a sort of mythology now. In one of them my first words to my Dad were, “Dad, I didn’t shit myself! If I had, I promised them you’d clean it.” In another one, after I heard the surgery was a success I told my parents and Paige, “Good. Now we can go on the Disney cruise with the kids and go to Normandy, Paris, and Rome.” These were trips we had talked about forever but seemed impossible (mostly because of time, not because of money). Now I was determined to make them happen.
My neurosurgeon came by, and he was dressed like Leonardo DiCaprio in The Great Gatsby— looking very good and extremely sharp. I suppose he was taking a victory lap. He asked me how I was. Before I knew it we were talking about music and table top board games. He had played the Forrest Gump and The Last of the Mohicans soundtracks during the surgery. He said I really lit up during the Last of the Mohicans, “Promentory” track. He was laughing about how well I was responding to his questions. He gave me a neuro exam (the first of many, again) and told me he’d see me tomorrow.
The mood was celebratory. I had survived the surgery, and they had completely removed the tumor. I was in the ICU with a catheter, but I was happy to be alive and with family. I couldn’t believe it. I was talking and hearing things coherently. I wasn’t experiencing any pain or missing a beat mentally. The surgery had lasted about 4 hours.
I remember the ICU nurse introduced herself to me as Michelle, and I immediately started singing the Beatles’ song Michelle, complete with the French chorus. I remember drifting in and out of sleep. I did have my phone and played music out loud. (It was a custom Big Little Lies soundtrack I’d made. I really like Michael Kiwanuka.) I remember thanking the ICU nurse for letting me play my music. I felt like myself, but I understood enough to realize that I was at the very least “woozy.”
Eventually everyone left, and it was just me and Paige. They originally told her she could not stay the night with me, but they relented and provided her a reclining chair and blanket to sleep in. That night was difficult. Part of ICU protocol is checking in on the patient every hour, especially a patient coming out of brain surgery. The nurses were wonderful and apologetic, but I was woken up every hour and tested in one way or another (vitals or a neuro exam).
I woke up the next morning (keep track now, it’s Wednesday morning) and felt more of myself. The turban on my head was heavy, but I knew well enough not to touch it or adjust it. My neurosurgeon came by to check in on me. He was very pleased with how my recovery was processing. He also delivered some news. The result of the “mini-pathology” during the surgery found that the tumor was metastatic, meaning it had come from another part of my body and formed in my brain as a tumor. This also meant that the tumor was malignant, but I didn’t understand that at the time. He also told me I would be moving out of the ICU today and back into a regular room on the 7th floor.
I knew I had the catheter in and wanted it out. It was not a painful process so much as it was awkward and embarrassing. I didn’t care about body issues (those were out the door the night I was admitted to the hospital), but it was more about my body not functioning as it should. Even after the catheter was removed, I couldn’t urinate at all. I’d later learn that this is a side effect of the anesthesia. At the moment all I wanted to do was urinate freely standing up, but it was impossible.
We moved back to the 7th floor shortly after lunch. This was a welcome development. I couldn’t wait to be back on the 7th floor and have my own private room again. I pictured it being like it was before the surgery. I knew I would still be tethered to IVs and medical devices, but I thought I would regain some of the autonomy I had earlier. I would learn the hard way that this would not be the case.
A male nurse named Steven helped me move gingerly into my new arrangements. I was now sporting an extremely thick IV in my right hand, so now the IV and monitoring equipment was on my right side and not the left. The power cords and IV tubes always fell awkwardly. The turban on my head continued to feel heavy and drift down towards my eyes. I still felt compelled not to touch it or adjust it myself. Paige put a sign on the door asking people not to disturb me unless necessary, and we settled in for the night. The usual interruptions occurred but it was at the normal frequency and not every hour.
Thursday came, and it would be the hardest day. There were a lot of factors. My parents arrived in the morning and I sent my Dad on another coffee mission. While he was gone and my Mom was getting breakfast, my neurosurgeon came in to check on me. He saw how far my turban was sinking down and adjusted it so I could see better out of my eyes. I was starting to look less and less like a sikh and more like a mummy.
I had written down many questions for him. To begin with, I wanted to understand the process for receiving the pathology information. As an engineer, I wanted to know the logistics. He became a little impatient but did explain that they took a sample and it was mailed to a pathology lab (I called it “Fedex’ed”) where they would take their precious time analyzing it and make a determination in 5 days to 2 weeks. He explained that he would call me in for a face-to-face meeting to discuss the results. He would not reveal them over the phone or to any other family members. And in the meantime it would be of absolutely no use to research or worry about potential results. This all made sense to me.
I didn’t know it, but I was still not understanding what I was hearing.
He turned to leave, but I had more questions about my recovery. What about handwriting? TV time? Reading? Video games? Slow, slow, slow— he said repeatedly. Everything in 5-10 minute increments, that’s it. He repeated this phrase over and over until I laughed, “You just had MAJOR BRAIN SURGERY.MAJOR BRAIN SURGERY. MAJOR BRAIN SURGERY. MAJOR BRAIN SURGERY.” Ok, ok, I get it, I told him. The only thing I could do without limit was take in audio— music, podcasts, audiobooks. That sounded good to me. He told me we were superpower brothers, and I needed give the radioactive spider bite time to take hold. He had me smiling as he left.
My Dad returned with my coffee, and as he did, a barrage of interruptions began. There was a speech therapist to test my speaking abilities. A nurse to administer a verbal and written cognitive test. Physical therapists to evaluate my motor skills. But the last one was the one that hurt the most. A team of three doctors knocked and walked in. The lead doctor came close and shook my hand as he introduced himself.
“Hi, I’m your oncologist.”
My heart sank.
I shouldn’t have let my emotions show so visibly, but I know I did. I hadn’t understood the implications of the jargon I’d been hearing over the past 24 hours. I was now being treated for cancer. I naively thought I had avoided the c-word. This was not the case. Metastatic means a form of cancer that has traveled to somewhere in your body. It means you have a cancer, and it has spread. And if you have cancer and it’s spread, that means it’s a late stage of cancer. As in stage 4. What the cancer was was still a mystery. That’s what the pathology was for. I had mistakenly thought that the pathology was still to even determine if the tumor was benign or malignant. It was definitely malignant and it had definitely spread from somewhere in my body to my brain.
I naively thought I had avoided the c-word. This was not the case. Metastatic means a form of cancer that has traveled to somewhere in your body. It means you have a cancer, and it has spread. And if you have cancer and it’s spread, that means it’s a late stage of cancer. As in stage 4.
At risk was the possible diagnosis of a glioblastoma brain tumor. This is very rare, but it’s the worst and most fatal type of brain tumor. However, its symptoms matched mine. My neurosurgeon had told Paige and my parents that he did not see evidence of that from his work and brief pathology on my brain. My oncologist said that it was still on the table until the full pathology came back. “The tumor is the rumor and the issue is in the tissue,” was the aphorism that he quoted. This hurt Paige because it took away a small comfort that had been given to her earlier. I was still not comprehending the whole picture.
By the end of his introduction and explanation about further appointments, I regained my composure (or at least tried) and thanked him sincerely and shook his hand and said personal goodbyes to the rest of his team.
Thursday wore on. My turban kept sliding. People were calling my phone, but I did not want to talk. I thought I would be more physically able but I was not. The pep talk my neurosurgeon had given me had worn off. I was in a strange room, I didn’t have my full field of vision, I had a heavy bandage sitting on my head, I had just met “my” oncologist, and I didn’t know when I was ever getting out of here, or if I even was.
Unexpectedly, my neurosurgeon came by Thursday night. He was dressed in scrubs because he was the on-call neurosurgeon for the night. He pulled up my turban again. Gave me a quick pep talk, told me we’d be removing the head bandage tomorrow, and then casually mentioned that I was probably going to be discharged tomorrow. WHAT? I was so excited. I told him I couldn’t wait to see him again, and he told me I wouldn’t want to see him— he was the on-call doctor. I’d only be seeing him tonight if something went really wrong.
Thursday night was rough. The hospital noises haunted both of us. We only got fits of sleep.
Friday morning came with sunshine. My neurosurgeon does rounds early, so the nurses assured me he’d be by sometime between 8-8:30am. Sure enough, he knocked on my door and came in around 8:15am with a pep in his step. “Let’s take that bandage off!” He said with energy. He started on unwinding the bandage. We joked about my hair and how I used to take it way too seriously. Well, that would be different now that I had no hair! Except…wait. He finished unwinding the bandage. My head felt light again. I could see out of my eyes with no problem. This felt amazing. But I was only missing 1/4 of my hair over the right side of my head. No one had shaved my head. Most of my hair was still there. In some ways great, but in other ways almost a practical joke, or at the very best a playful mystery.
The wound itself was a sight to behold. The incision started at my right side, mid-sideburn, and continued all the way to slightly left of the center of my eyes about a third of the way up my hairline. There were staples holding my skin together. It looked like they had tugged roughly on my skin to make it flap over itself and then stapled it together. I had 31 staples total.
Wound care came with explicit instructions. The incision was so low on my right side that “there has never been a better time for you to grow a beard.” No shaving. “You cannot get the incision wet. No shower water hitting the wound.” I could only shower from shoulders down. “No hats. Open air only. Sleep only on your back, not on either side of your body. No lifting anything more than 5 pounds. Of course, no driving.” All of this sounded fine at the time especially because discharge appeared to be in sight. My neurosurgeon left again referring to me as his superpower brother. He said he would be sending in the discharge nurse shortly.
We were like kids at Christmas.
A no-nonsense (but still caring) nurse came in with discharge instructions. We reviewed medication schedules, wound care, signals and sensations that would necessitate immediate action, etc. I asked about getting my IV out, worried that it would be quite painful since the tube was so thick. “It won’t hurt,” she said. I couldn’t believe it. I was able to be untethered! She got to work on both the IV injections. The first one was small and easy. The second one was the large one and she was right— I only felt the slightest twinge of pain. She bandaged me up and said that she was paging transport to wheel me down in a wheelchair. Paige would have to pick me up at the hospital sliding doors. We asked her to snap a picture of us. I smiled happily when she took the picture.
I didn’t know what my future held, but I was going home. Going home!
The hospital transporter wheeled me out. I talked with her, and she told me she was dealing with a chronic disease that made work and school difficult. I could tell she was tough, and I told her so. I wished her the best. Paige had pulled up in her car. The sky was blue, and the sun was shining. The sun hit my skin, and it felt like a warm bath. I got on my feet and slowly got into the car. I shut the door, and we drove home.
As we drove away from the hospital, I looked back on the large building in the skyline. Its dark blue corporate brand-siding was clearly visible above the tree line. I realized that I had died in that hospital and never left. That hospital was my tomb. John Catoe: born June 10, 1980; died April 23rd, 2019. What I was experiencing now was pure grace. Every day past April 23rd was and is a gift. It is a day that I didn’t expect to experience. It is another chance to hug the ones I love and tell them I love them. It is another chance to share grace and joy with strangers and community.
I was now living my resurrected life.
The next two weeks were difficult. I had follow-up appointments with the neurosurgeon and and initial appointment with my oncologist. The neurosurgeon would also call me for a face-to-face meeting once the pathology results were in.
Coming home was incredible. It was strange and intimately familiar at the same time. Seeing my children was joyful and heartbreaking. Paradox was my new way of life now.
We took things very carefully and slowly. We had a downstairs bedroom that I used to sleep and rest in. I did not go up the stairs for the first week. This meant I couldn’t help put my kids to bed (and that hurt). I did everything very slowly. Paige made sure I was safe in the shower and always had help if I needed it.
My own body was driving my crazy. I hated not being able to shave. I couldn’t wash my hair, and it developed into a sort of rats’ nest, staining pillowcases and giving me a halo of bad smells. My sleep cycle was broken. I would wake up at 2am or 3am. Wide awake for at least 2 hours. I would eventually fall back asleep with great difficulty. I was paranoid about getting a headache that would wake me from sleep. I was hearing the hospital nighttime noises every time I closed my eyes at night. I was anticipating nurses to come into my room and take my vitals or a blood sample.
On the other hand, every time I woke up in the morning, I would feel a microdose of euphoria. “Yes! Another day!” I would think. I would wake up well before Paige. The first night home was 4:15am. The next morning was 5:15am. I couldn’t wait for 6am so I could wake the kids up and start making their school lunches and make the coffee. (Paige eventually convinced me to wait til 6:30am.)
During the day Paige would find me crying from happiness in a random room in the house. I called them continual “epiphanies of happiness.”
Then the dread started. We knew the pathology results were around the corner. We began to live in fear. Would it be a metastatic glioblastoma? I began to consider my life in terms of number of months I had left. The idea of not being there for my children caused me to break down in tears nightly. I would hug and kiss them goodnight and treat it as if it would be my last visit with them. I still do this every night. It’s so heavy. I try to drink in every moment and enjoy every scene. It’s frustrating when I lose my patience, but I am human. If I’ve lost my composure at some point during the day, I always make it a point to apologize to both of my children before bed and tell them how much I love them and how proud I am of them.
My neurosurgeon called on a Tuesday morning. We drove straight in and waited to hear the pathology. The receptionist and nurses were very jovial— that had to mean it was good, right? After the perfunctory vitals and nurse visit, my neurosurgeon came in. There was some small talk about how my wound was doing. He then delivered the news. Metastatic melanoma.
Huh. We had some questions. It wasn’t glioblastoma. That was good, right? Yes. It was. But there was still a lot of reasons to be very cautious. It was metastatic. It was out of my brain now, but we didn’t know where it came from. My neurosurgeon would be letting my oncologist handle the load for my treatment and future questions. From there we focused on my wound. It looked good. I could get the staples out. I could shower and shave but still not get the incision itself wet. No haircuts for now. I still couldn’t drive and still couldn’t lift anything more than 5 pounds. My media limit was upped from 5-10 minutes to 30-45 minutes. It would take close to a year before my head and body felt normal again. (The fact that they quoted a “year” made me celebrate in my mind. They’re talking in years! Not months!)
A nurse came in and removed all 31 staples with a little tool. Only one of the staples stung upon removal. She said it looked and was healing great. I could wash the margins of it with a wash cloth every night. It was going to be very scabby. We exchanged hugs with the nurse. I got a picture with mu neurosurgeon. We then made a follow up appointment for another MRI for my brain and another wound care appointment for the first week of June.
We got in the car and considered this a win. We didn’t know how bizarre and sneaky melanoma could be.
Later that day we had our first appointment with my oncologist at the Cancer Center. This was the appointment that made us very nervous.
They called us into a patient room and we didn’t wait very long until a very energetic oncologist doctor and his nurse came in. My oncologist was very positive and very patient. Even though we had a list of written questions that we wanted him to answer we let him go through his prepared review first. The melanoma was out of my brain. But now we had to find where in my body it came from. I had a small lung nodule in my right side. Was that it? Was it in the lymph nodes or sentinel lymph node? Before we decided on treatment, we would need to test and test and test in order to determine the treatment.
I needed to see my dermatologist again. Have all records sent to my oncologist. We were informed that we were still waiting on some pathology results to result. There is a certain melanoma mutation called BRAF that rules out immunotherapy and results in drug therapies. My oncologist didn’t disparage the drug therapy, but whenever anyone talked about immunotherapy it was in language that praised it as the “hot new thing.” The next step would be a PET scan. This would hopefully show where the melanoma was and how far it had spread. For a PET scan you drink a lot of sugary liquid on top of a “radioactive sugar” IV injection. Cancer likes sugar, and under the scan, it glows and reveals the “hot spots.” The first available date for the scan was two weeks out. The results could be discussed at an appointment a few hours after the scan. At least that was a relief to hear— all of the waiting for results and discussion just breeds more and more dread and anxiety. Once we knew where I need to be treated, then we would determine the appropriate treatment for me and make a treatment plan.
We then unloaded all of our questions. He answered them to his best and was very patient. He sat with us and talked for all long as it took and until we were out of things to ask or comments to make. Responding to one of his questions he referred to something in terms of “5 to 10 years.” Again, I was so happy to hear someone talk in terms of years and not months! I understand, nothing is guaranteed and it can all change in a day (like it did April 18th, 2019), but I was allowed to hope again. If I could just have a few more years with the kids— what a gift!
Every day is a gift. Everyday I wake up happy that I survived another night. Every night I hug and kiss my children and tell them how much I love them and how proud I am of them. Every night I tell my wife I love her and how thankful I am to be married to her. I’ve had many great years. I’ve gotten to see the world and live like a king. Even if it all ends tomorrow, it’s been an incredible ride and I have deep deep gratitude for the pleasure of being allowed to exist. Existence is a gift no matter what comes after. I wake up every day and attempt to live in the moment for every second. Everything is so beautiful. There is grace everywhere. People are kind and precious. Thank you for being on this journey with me. It’s worth it.
If you’ve arrived here, congratulations! You’ve just read through 12,000+ words about my journey. That’s an accomplishment, and I’m deeply grateful. I hope some of my story has helped you. I hope other parts of this blog can also be helpful. I will continue to update the My Journey page with medical updates to keep folks informed. The updates will be same day as I receive news as long as I’m able to write.
Please feel free to email me at firstname.lastname@example.org with any comment, questions, cries of joy, or shouts of anguish.
Grace and Peace,