From a Thursday morning to Stage IV Metastatic Melanoma and Survivorship
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 my daughter, Mina. My son 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 15th 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. My son was eating breakfast and 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, April 16th, came and went. I went to work, took three 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, April 17th, 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 three 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 ten minutes, and he’d acquiesce to ten 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. 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 Thursday (April 18th) 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, I was 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: “No.”
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 was actually the third medical professional I had seen in a span of four days. One urgent-care visit that wrote me off as a sinus infection and another nurse practitioner that thought it might be something seasonal but advised me seek more professional attention if my symptoms continued, especially the headaches waking me at night. However, yhis was the first medical care provider that wanted me to start from scratch.
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 call and response to be repeated over and over and over during the course of the next nine days) and I took a seat and waited to be called back. After ten 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 2.5 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. She ask, “Could I call my your 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 that her husband and father of two young children had a brain tumor and was at the hospital.
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 routine to be repeated over and over and over during the next nine 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 like my brother, and 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 for them 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 brain mass soon. She left and an ER doctor came in about ten minutes later. The ER doctor introduced himself and explained that I had a mass in my brain that was about 2.5 cm large on the right frontal lobe. It was swelling,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 potential 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 on the same level as 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 the IV coming along 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 combined with a jack-hammer. 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, “Five 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 our introduction to the phenomenon of “hospital sleep.” Every four 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 five 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 young 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, and vegetative state, he explained in a very matter-of-fact manner. We asked about the possibility of a second procedure needed to remove the tumor, and he answered that it would depend on the pathology, and unfortunately pathology takes five days to two 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 when he was sixteen years-old. He needed to move on to finish his rounds, but he explained that 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 second 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, so 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 six 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 with the way she was addressing the technician. Eventually, they wheeled me into the scanning room. This scan was easy. I just had to stand up while a rectangle-shaped device scanned my abdomen up and down twice. Done in two minutes after thirty minutes of waiting. Then another fifteen minutes of waiting for hospital transport.
Back in the hospital 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, and 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 brain 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 I found the book so profound, as if it were speaking directly to me. I kept telling my friends about it. I was underlining striking passages 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. The drive was nine 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.” I was imagining the horror of losing one of my own children before I died myself, and I was determined not to let that happen to my parents.
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 I 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 asked. 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. 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 fifteen 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 pictures, as long as I didn’t leave the property. I got all cleaned up— shaved, showered, 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 fifteen 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 three to five hours. The would perform the craniotomy and take a small sample of the tumor. They would take twenty to thirty 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. Those were 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: The Last Airbender and The Legend of Korra are both very spiritual shows. In The Legend of 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 one, 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: The Last Airbender about Aang— a very young and silly boy coming into his gifts amidst great conflict in the world. It was definitely more kiddy than The Legend of 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 five 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, what I was going through, 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 1990s internet dial-up, jack-hammer 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 twelve year-old 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 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.
“Oh, he’s coming around. He’s waking up. John? Hello.”
I woke up and a nurse was talking to me. She explained that I was recovering from my surgery and that I would be able to see my family soon as long as I was stable.
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 lay under the 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 music from 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 four 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 (by either checking vitals or a by being given 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 sat with me, while Paige had a quick run home.
I remember sitting there waiting in hospital time– somehow time slows down and speeds up at the simultaneously. I was playing music on my phone, and just laying there waiting. I was playing music on my phone and I’d picked Paul Simon’s American Tune. As I sat there I didn’t feel my body any more. I felt no sensation. It was like a state of deep meditation. The lyrics to the music almost perfectly described what I was experiencing.
And I dreamed I was dying
Paul Simon, American Tune
And I dreamed that my soul rose unexpectedly
And looking back down at me
Smiled reassuringly
And I dreamed I was flying
And high up above my eyes could clearly see
The Statue of Liberty
Sailing away to sea
And I dreamed I was flying
It was so still and peaceful that I became gripped by sudden fear. Somehow I felt very alone. I think that when we experience true peace it’s so foreign that we really don’t know how to handle it. I came back to myself and Paige rejoined us. I felt better now that I was in “reality” even though I had just experienced true peace. A few minutes later 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. All visual media in five to ten 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 superhero 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 twenty four 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. At risk was the possible diagnosis of a glioblastoma brain tumor (something my aunt developed and passed away from). 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 a quarter 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 five pounds. Of course, no driving.” All of this sounded fine at the time especially because hospital discharge appeared to be in the near future. My neurosurgeon left again referring to me as his superhero 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 un-tethered! 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. I could not maintain any semblance of a sleep routine. 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 I woke up at 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 in a random room of the house, crying from feeling overcome with a sense of joy. I called these moments “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 every night. I would hug and kiss them goodnight and treat it as if it would be my last visit with them. I did this for months. It’s was 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? Almost every patient indulges in mind-games like this when they’re about to hear something very heavy. Of course, it doesn’t mean anything. Outpatient and hospital staff still laugh and joke even when news of terminal diagnosises are about to be delivered in the next room. It’s not cold or callous, it’s just what the day-to-day environment is like. 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 good 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 my 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 yet know how bizarre and sneaky melanoma could be.
Later that day we had our first appointment with my oncologist at the Cancer Center. We were very nervous about this appointment.
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. we had a list of written questions that we wanted him to answer, but 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– the primary site.
Melanoma begins with a primary site, usually a dark amorphous mole that can change shape over time. If caught early enough it can be surgically removed with clear margins. This is typically a stage one melanoma. I had been going to a dermatologist since 2008 and receiving body scans. I did have a “severely atypical” mole removed in 2010 from my back and the margins did come back clear. But more than likely, that severely atypical mole did not contribute to the metastatic melanoma that metastasized to my brain. The rest of my body scans came back with no significant findings.
This began the search for the primary melanoma site. 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 and have all records sent to my oncologist. We were informed that we were still waiting on some pathology results to return. 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!
We left and we had our mission– find the primary melanoma site. To begin with, I would need to see my dermatologist to discuss my condition and obtain all of my medical records to be shared with my oncologist and his hospital system. When you call your dermatologist and tell them you have advanced stage melanoma that was recently removed in the form of a brain tumor, you get an appointment the next day.
The appointment was very strange. I’m talking to the dermatologist I’ve been seeing for over ten years and here I am with advanced stage melanoma that moved to my brain and messed up my life. Even though my staples were out I was still sporting a gnarly head wound and did not look like someone who was well and healthy. So it’s obvious something is really wrong but I’m having to explain everything– and explain it to the doctor who had the best chance to catch it before it became the problem it was now. He listened to my story, performed a thorough body scan, and told me about another patient who had metastatic melanoma but completed immunotherapy treatment and was all clear. I pointed out a small bump that I could feel under my skin on my right thigh. It was just below a scar I got as a kid after falling off a tree branch. He felt the bump and thought it was probably a cyst but thought it would be safe to biopsy and check it anyway. We talked about treatment options and he was positive on immunotherapy but cold on radiation treatment to my brain. “Melanoma doesn’t respond to radiation,” I remember him telling me. I was very nervous about shooting radiation into my brain and this option wasn’t helping me get comfortable with this part of my needed treatment.
I didn’t blame my dermatologist. I still don’t. Melanoma is so bizarre, so sneaky. I talked with my North Carolina doctor friend and he mentioned to me that melanoma can take shape in small white dots on your skin– nearly impossible to identify and do anything about. This is called an amelanontic melanoma and can appear pinkish, white, red, or even clear. I definitely had those tiny white dots in various places on my arms. When you think of melanoma you think of a dark, black sinister shape. You don’t think of a tiny white dot, but melanoma can take that form too. At the same dermatologist appointment he told me about regressive melanoma. It’s a phenomenon that occurs when a melanoma appears on your body but is turned into fibrotic components (damaged tissue) due to an immune response from your body. If this occurs, it’s extreme likely to metastasize. From what I’ve read, there is only one recorded cases of a regressive melanoma that did not metastasize to somewhere else in the body.
Wait. What? You can have a melanoma, your body’s own immune system can take care of it, but before it’s gone, it can still spread to…your brain and all throughout your body?
Yes.
The dermatologist recommended a lot of tests to find the primary melanoma site. I would need to get my eyes checked for ocular melanoma. I would need an endoscopy to check my guts. I would need a colonoscopy to check that area too.
In the mean time, he would biopsy the bump on my thigh and get back to me.
There was only one active neuro-ophthalmologist in Greenville that could check for that condition. We were able to get a rushed appointment for the next week.
I remember sitting there and being roughly handled for the exam (keep in mind, I’m still sporting a head wound) and I’m thinking, “Is he going to tell me right here, right now if I have ocular melanoma? Or is he going to leave and make me wait before telling me over a phone call or something?”
“I don’t see anything concerning,” he said. Well, at least that was a relief.
Before we left he told us a personal account of a friend of his who passed away from melanoma. “He had a primary anal melanoma,” he said slowly. “Unfortunately, if the primary melanoma is on the anus, there’s nothing that can be done. So get that checked.” Well, great, I thought. He even wrote the phrase ‘primary anal melanoma‘ on a purple post-it note and handed it to me. As if I was going to suddenly forget the fatal condition that could be spreading in my body in the most embarrassing area.
We made an appointment five days away to have that area inspected with my primary doctor. That was a fun phone call. The only thing that comforted me until that appointment was that primary anal melanomas were often accompanied by loose, bloody stool– and fortunately, everything in that area was working normally.
We also learned that the endoscopy and the colonoscopy would be unnecessary because anything that would be found in those exams would show up on the upcoming PET scan as “hot spots.” Less procedures and exams was much welcomed news.
The next week, my primary doctor examined me and performed a prostate exam as well. Nothing concerning. Thank goodness. She also went through my dermatological records, focusing on the severely atypical mole removed in 2010. It was all just guesses but she wondered if that had something to do with what I was going through now.
While Paige drove me back from that appointment I got a call from a number I didn’t recognize on my phone. I picked up and it was my dermatologist. If it was the dermatologist himself calling the news was not good. Paige pulled the call over and I put the phone on speaker as our hearts were pounding.
He informed us that the biopsy of the bump on my thigh came back as metastatic melanoma. It was not the primary but another metastasis. He informed me he had called my oncologist and told him. My PET scan was the next day, so depending on what that found we could take action and cut out the tumor or decide what else to do. He gave me his cell phone number and told me to call him anytime and then hung up. We drove home and sunk into our living room couch.
We spent the rest of the day in shock. Before this news, we had a small hope that my PET scan would come back completely clear. Maybe the brain tumor was it and since it was gone, maybe my body was clean. But now we knew for sure that that wouldn’t be the case. The PET scan was at least going to find the tumor in my right thigh. In addition, over the last few days I had felt a very slight pain in my right side, where the liver is located. I voiced my fear that the PET scan was going to find something in my liver too. Paige could only say, “I know,” as she hugged me and cried.
The next day was May 21st, 2019. This day was going to determine what my prognosis was, what my treatment would look like, and how much time I may have left. All of this would come out of the results of the PET scan. It was scheduled at 7am. We had a friend in the neighborhood take Mina to school early that day and we had another friend meet us at 6:15am to take Will to school early. The kids were accounted for and now I needed to find out my future.
We arrived and checked in. They confirmed insurance information and then took me to a room to get my radioactive sugar injection. The nurse had trouble finding a vein. When it comes to injections I am a fainting risk because of a bad experience I had when getting blood drawn for life insurance purposes years ago. I was getting very upset and worked up. Part of it was that I knew that if I needed immunotherapy that there would be a lot of injections in my future. To have this first diagnostic injection go so poorly was a bad sign. It took three nurses and five attempts. For my later PET scans they remembered me and the difficulty with the injection (I learned that magic phrase to say to them is, “I’m a tough stick”). One technician told me he was “haunted” by that experience and wouldn’t let it happen again.
After the injection, I was given a plastic bottle of water that was nearly full. It was a water / sugar-syrup mix that had to be drank slowly over twenty minutes. I would need to sit in this room for an hour, let the radioactive sugar course through my body, and drink this water mix. I needed to stay in a reclined position. The water mix wasn’t bad– no problems drinking it. The only issue I had was that I was trying to meditate and close my eyes but the room had automatic light switches. So for half of the time I was trying to meditate and close my eyes with beams of florescent light shining through my closed eye lids. Finally, the lights turned off on their own accord and I had my darkness. I knew my body wasn’t clear but I meditated on hope, being at peace, and a sense of ‘clean.’
After the hour for the sugar to take effect, a technician walked me to a trailer.
Yes, I was walking into a trailer to determine the fate of my body. For whatever reason, the PET scan device is housed in a trailer attached to the cancer center. I think this is because a PET scan device is so extremely expensive that it needs to be mobile for some hospital systems. I also later found out there’s an incredible amount of red tape associated with buying and operating a PET scan machine. It’s easier to house it somewhere portable than installing it in a facility.
The scan itself was shorter than the wait time for the sugar to course through my body. After thirty-five minutes of lying on a table that moved me back and forth through a huge, hollow eye I was done. I felt fine. They walked me out and urged me to drink a lot of water to get all of the radioactive material out of my body.
Paige drove me home and we both collapsed on the couch. We would be going back to the cancer center at 12:45pm to hear the results. We were exhausted but on edge. What were we going to hear? Stress and exhaustion took over and we didn’t move until time to get a light lunch and then drive back to the cancer center.
We arrived at the cancer center, checked in, and waited in an exam room. I remember focusing on positive thoughts. I didn’t know if my thoughts could change the course of the news I was about to hear, but it couldn’t hurt. I was just going to have the hot spot on my right thigh– that’s all, I would say to myself.
After what felt like an eternity, there was a soft knock on the door and my oncologist burst into the room, eyes wide, and quickly said, “I’m really encouraged by the results of your PET scan!”
Stunned, shocked silence from both of us.
His nurse followed him in and started taking notes. He began his explanation. “There is the right-lung nodule which did light up. It looks to be about 10mm. It’s probably not the primary.” We knew about the lung nodule from the CT scan at the hospital, but now we knew it was part of the cancer and probably not the primary. “There is nothing in your lymph nodes, all of the other hot spots are only subcutaneous skin nodules.” It was at this point that the good news was sinking into Paige and she starting crying.
My oncologist deftly handed her a box of tissues while he continued talking. It was one of the smoothest moves I’ve ever seen a doctor perform.
He showed us the scans on the computer screen which looked like cross-sections of my body. The hot-spots were showing up as bright white.
“You have six hot spots. The brightest one is the subcutaneous one in your mid-back. There’s the one in your right thigh, although it’s hardly there since some of it was removed for the biopsy. There’s the lung nodule, which we already knew about but it did light up, and we don’t think it’s the primary. There are two very small ones found in your left glut muscle. There’s a very small hot spot on your right shoulder. They are all subcutaneous, just under your skin, except for the lung nodule. As far as your body goes, that’s it.”
Paige was crying tears of joy and I was just realizing how incredible this news was, “So nothing in any organs? Nothing in the bones? Nothing in any lymph nodes?”
“Nope.”
He then went into his plan for my treatment. He wanted the lung nodule removed. This would delay my immunotherapy treatment due to recovery from the surgery but that would be the next step. I would need to get a consult with a thoracic surgeon and he would make the referral for me to someone he recommended within the same hospital system. The date of the surgery would be made at the consult appointment. He would also make the referral for the radiation treatment I would need for my brain. He was recommending stereotatic radiation as opposed to whole brain radiation. I would have to get more details and set that up with the radiation oncologist.
He laid out how immuntherapy treatment would work. I could start two to four weeks after my lung surgery. The treatment would be an intravenous infusion every three weeks for four treatments total. Immunotherapy includes side effects– almost any ‘-itis’. Colitis, hepatitis, any inflammatory disease. Some patients only make it through one treatment. The efficacy is widely variable since the treatment is so new. About 50% of patients show a response after receiving treatment. After initial treatment, I would need maintenance treatments. That would be an infusion every four weeks for two years.
We finished the appointment by asking about how the melanoma developed. His thought was that it had grown and metastasized over the course of a few months, not years. (So doing the math in my head, I had somehow developed a melanoma in January 2019, maybe.) He also said he thought it was a regressed melanoma– he advised to not become obsessed with finding the primary. Many dermatologists can get fixated on finding the primary melanoma when it’s past the point of being useful. He advice was to move on and treat the hot spots we now knew about.
Lastly, because of my issues with getting injections and needles he recommended I get a port installed. It’s a device that sits on under your skin, close to your collar bone and gives easy access to your veins. No more “tough sticks”. It would be an easy out-patient procedure.
And there is was. We knew what we were dealing with. We had an idea of how it happened. We’d never really know the full picture. But what was important was dealing with what we knew. I needed another surgery to get this lung nodule out, and then I need immunotherapy to take care of these hot spots before they could spread even further. Radiation was on the horizon as well but I wasn’t too eager to pursue that because of the possible repercussions to my brain function, and the comment that my dermatologist had made earlier about radiation being ineffective at treating melanoma.
The next day we had an appointment with my dermatologist to get the stitches removed from the biopsy that turned out to be a metastatic melanoma tumor. We shared the news from the PET scan with him. He was glad to hear and then said, “Well, let’s cut them out!” He was ready to dice me up to get those tumors out. The call to action was nice for me to hear but at the same time we knew there were a ton of factors and immunotherapy was my best shot at getting past this. He gave me a quick body scan and found the subcutaneous tumors. They were there, we could feel them (except for my lung nodule). It’s so strange to touch and feel something so small and firm yet so deadly and destructive to my body. They felt like little grape seeds, just under the surface of my skin. He removed my stitches, recommended some specialty cancer hospitals when asked (Sloan Kettering, MD Anderson, Duke, Emory, Mayo Clinic). He strongly recommended getting a second option. Even if everything was cut-and-dry, even if my PET scan had been completely clear– go get a second opinion from a specialty cancer hospital.
My dermatologist had a very good point. My oncologist treated every type of cancer. I remember him asking me if I was sure I never smoked in my life (I think he thought it was probably lung cancer before the official pathology report came back). He’s treating me for melanoma, then he’s treating someone for lung cancer, then he’s treating someone for breast cancer. The exam rooms all had educational cross-sectional diagrams of what lung cancer and breast cancer tumors looks like across various stages. I had not seen a melanoma expert yet.
He finished by reiterating his opposition to the radiation treatment to my brain. He didn’t provide an alternative– he could only say in his experience, radiation was not effective in treating melanoma.
This was the third day in a row of doctor appointments. One PET scan and three appointments. We finished that last appointment for the week on Wednesday afternoon exhausted. But our work was still ahead of us. We knew I needed immunotherapy treatment, we knew I needed a surgery to get the lung nodule removed, and we knew that we needed a second option from an expert source. My entire family agreed that seeing doctor that specialized in melanoma was critical.
I remember waking up Thursday, May 23rd with a mission. It was the first day that I had no appointments but I knew I needed to work the phones to get an appointment with an expert melanoma doctor as soon as possible. I called Emory (Winship Cancer Institute in Atlanta), Duke Cancer Center in Raleigh, North Carolina, MD Anderson in Houston, Texas, and the Mayo Clinic in Jacksonville, Florida. Travel would not be a barrier– we’d hop on a plane in a heartbeat if we’d had to. And we’d do it over and over, if that’s what it’d take to get the treatment I needed.
Surprisingly, all of these hospitals were welcoming and tried to get me an appointment as soon as possible. I was thinking anything would at least a month out. But when you’re dealing with cancer, everything is emergent and expedited. Emory Winship Cancer Institute (where President Jimmy Carter was treated for melanoma) was the first to give me an appointment for June 4th. That was only a week and an half out. Not bad! Next up was Duke Cancer Center which some friends had already highly recommended to me because of friends and family with brain issues that had been treated there. Duke offered an appointment on Friday, May 31st. That was only a week out. One week! I couldn’t believe it– these specialty cancer hospitals really do want to help and see people as soon as possible. I felt pride in my fellow human beings. See? We can do good things and help each other. I booked the Duke appointment and began the registration process. I called MD Anderson just to say I tried three different specialty hospitals but they could only offer something in mid-June and since it would be a travel experience to Houston, Texas it was easy to decline taking the process with them any further.
But I had an appointment next Friday with a doctor who specialized in melanoma! How amazing!
The rest of the Thursday and Friday were dedicated to getting all of my medical records to Duke Cancer Center. We had to go to a records room in the downtown hospital where I had my brain surgery. Fortunately, the procedure was administrative but not bureaucratic. Everyone working there was genuinely working to help me. Even though a lot of medical records are electronic, hard-copies of everything (include DVDs of scans) would need to sent physically to Duke to be entered into their system.
We had just finished an overly scheduled week of appointments, scans, and treatment planning, and the coming week was going to be even more involved. Tuesday would be the consult with the thoracic surgeon for my lung. Thursday would be my first appointment with a radiation oncologist, and Friday was my appointment with a melanoma specialist at the Duke Cancer Center in Raleigh.
The consult with the thoracic surgeon was quick and easy. He was an older gentlemen who didn’t go into very much detail unless prompted. He stated that he did not think that the lung nodule was the primary melanoma. When asked about recovery time and how that would impact when I could start immunotherapy treatment, he said there would be no impact. There would be no need for an ICU stay as long as everything went well. As long as there was not an air leak (very rare) during the surgery I would be able to return home the next day. He went into detail about the surgical procedure which would involve multiple small incisions but the entirety of the surgery would only be one hour long. He detailed what would happened if they encountered scar tissues, which is very rare. They would send the removed nodule to pathology, and we would get results on it quicker than my brain sample.
We pushed for schedule. We needed the surgery scheduled as soon as possible so I could begin immunotherapy. He said the surgery would be scheduled two to three weeks out but that I would need to speak to his nurse to get it officially scheduled.
He left and his nurse came back to schedule the required pre-operation tests and procedures. “Let’s see. We can do the surgery either June 3rd, or…June 17th.” June 3rd was the next Monday– that was only five days away. Securing the surgery that early would get me immunotherapy treatment faster. Waiting til June 17th for the surgery would put my somewhere in late June to start my treatment, possibly even later– that would give the cancer that much more time to spread. That option was not ideal.
We pushed hard for the Monday, June 3rd surgery. It would require me to come back the next day (Wednesday, May 29th) for a battery of lung tests, and then the day after that (Thursday, May 30th) for a hospital pre-operation meeting with the anesthesiologist. That same Thursday (May 30th) would be my first meeting with my radiation oncologist. After that, we had our Friday, May 31st meeting at Duke Cancer Center.
The rest of the week was going to be extremely busy. But we were happy to have all of this stuff lined up and scheduled. Many things were happening and that was good.
You can’t afford to let the default scheduling carry you through cancer treatment– you have to push, and push hard. Don’t be a jerk but be your own advocate.
The Wednesday lung tests consisted of me sitting in a plexiglass chamber and blowing hard into a tube. I was instructed to keep blowing even when I was out of breath. I had to repeat this exercise over and over. Only one test involved me blowing into the tube with some encountered resistance.
At Thursday morning pre-operation meeting at the hospital I met an anesthesiologist but not the one who would actually be practicing on me on the next Monday. The actual anesthesiologist wasn’t available for this meeting but he could walk me through the steps. On the day of the surgery I would go in for a CT scan of my abdomen. The would locate the lung nodule in my right lung. From there, the procedure was to numb my right side and stick a trace wire into my skin where the lung nodule was located. The surgeon would use this trace wire to make the incision and remove the nodule. I asked about anesthesia– while I would be under total anesthesia for the surgery, I would be awake and conscious during the procedure to put the trace wire into my lung. That part got me a little nervous. The idea of sitting there and watching a wire being inserted into a vital body organ sounded nerve wracking, but I had just been through major brain surgery so I was sure I could withstand this small, hopefully quick period of discomfort. Still, the idea of laying on a gurney and saying “See you soon,” to Paige as a metal wire protruded from my right side was not the way I pictured a lung surgery.
That same afternoon we had our first meeting with my radiation oncologist. Within five minutes on our appointment it was clear that he had a sense of urgency about him regarding my treatment. Paige and I could feel this energy and it reassured us that this doctor knew what he was doing and we very invested in getting me the correct treatment I needed. He was surprised I had not yet had another MRI since the surgery to see what was happening with my brain. It was great that the entire 2.5cm tumor had been removed but what about the resection (area where the tumor used to be)? Where there anymore lesions in any other places in my brain since then? A whole month had past since the surgery. He didn’t scare us but he did instill a sense of urgency about treating my brain. We already had a sense of immediacy about getting immunotherapy treatment but I had been slow to pursue radiation treatment because of my own apprehension about it. Now I may be paying the price for my own trepidation if the cancer was spreading in my brain.
There were two options on the table for radiation treatment to my brain. Whole-brain radiation and stereotatic radiation. Whole-brain radiation shoots radiation into your entire brain. The potential side effects are numerous and frightening. He handed us a paper to sign entitled “Disclosure and Education for Radiotherapy.” The scariest item on the item list was “Brain damage causing a loss of some degree of thinking ability or memory, or personality changes.” Other named, but not all, side effects: hair loss, nausea, vomiting, headaches, fatigue, and drowsiness. It was quite a horrifying list.
The second option, which was recommended for me, was called stereotatic radiation. This procedure consists of shooting radiation into specific area of the brain with a guided radiation laser. The area of my tumor removal would absolutely need this treatment in order to kill any remaining cancer cells still present. While describing the side effects of this treatment he found the item on this list that listed “Brain damage causing a loss of some degree of thinking ability or memory, or personality changes,” and he crossed it out. “That’s only for whole-brain radiation.” Okay, this is good, I remember thinking. The other items didn’t sound great but ruling out brain damage was lifting my spirits.
At this point I brought up the issue that my dermatologist had raised– that radiation was not effective in treating melanoma. He was quick to respond, “There are different results for radiation treatment of melanoma in the body and melanoma in the brain. Radiation treatment for melanoma in the brain is effective and if no treatment is given, cancer reoccurance is around fifty percent.” When I added that my dermatologist had told me that talking point, he did say it was “infuriating” to hear since the treatments in the body versus in the brain were entirely different playing fields. He told us that he would have no hesitation to recommend these treatment for himself or someone he loved if they were in the same position as me.
That assurance combined with his sense of urgency regarding my MRI and overall well-being won us over. I signed the disclosure form and he described what the rest of my treatment would look like.
To begin, I would need an MRI to know exactly what needed to be treated. But unless something very unexpected presented itself, I would only need one treatment of radiation to my brain. It would be a forty-five minute session and in order to use stereotatic radiation I would have undergo a procedure that utilized a device called a cyberknife. This device was located at a cancer treatment center in Spartanburg and even though it was outside of the hospital system currently treating me, they refer patients for treatment there very often and it’s not a problem. I would need follow-up appointment to have a mask made in order to keep my head still for treatment. We would be able to schedule the cyberknife procedure at the appointment when the mask was made.
He escorted us to the check out area and used his sense of urgency to schedule an MRI for me and the follow-up appointment to have the mask made for the cyberknife treatment. We were grateful to have someone advocating for us, especially a doctor, when it came to scheduling these critical scans and procedures.
We headed home to process the new information and how it would effect our timeline. But as soon as we returned we needed to pack up to travel to Durham, North Carolina for our appointment with a melanoma doctor at Duke Cancer Center. Durham is around three and a half hours away from Greenville– not a bad drive but not a small one either. Paige’s sister graciously agreed to watch the kids for us and my parents used their saved-up hotel points to book us a room for Thursday night– we didn’t want to take a chance and get stuck in traffic and miss our chance at a 1pm appointment with an expert melanoma doctor. So we came back home, put the bags in the car, and took off for Duke Cancer Center.
A friend later described the Duke hospital system to me as a “maze.” And, boy, was he right. The next morning we drove to the hospital system and it is gigantic. I had planned our our route and directions the night before but we had trouble even finding the correct parking deck. We ended up in a parking deck that was a very long walking distance away from the building we needed to report to. We got out of the car, trying to find a route to the building. I’m looking at my phone, crossing streets haphazardly, and Paige is cautioning me. Anxiety levels were high. At some point we finally found the parking deck we were supposed to park in, which was very close to the building we needed to report to. The hospital campus buildings around us appeared massive. We found our building and walked in, following the signs to the specific floor we needed to be on. There wasn’t a check-in counter. Instead, there was a check-in line that utilized ropes and stanchions and weaved around itself like a TSA security line at an airport. We were early for our appointment so we weren’t rushed, but it was surprising to see the difference between a medium-sized city hospital system and a nationally prestigious cancer center.
We checked in and waited. To our surprise, we were called back right at our 1pm appointment time. I had a blood draw and my vitals taken with one nurse, then we were shown to our exam room. Another nurse came in to review my case, and the purpose of the appointment.
“So, you’re here for a second opinion. Is that correct?” She asked.
“Right, we want to be sure we’re moving forward with the right treatment. I have one lung nodule and five subcutaneous hot-spots. Immunotherapy is on the table but my dermatologist just wants to cut the tumors out immediately.”
The nurse gave a slightly visible snicker. “Got it. Okay. That’s all I need.”
After a twenty minute wait the doctor came in to examine and consult me. This was the doctor we’d be waiting for– someone with tangible knowledge and years of experience in the field of treating melanoma. We could notice that he was a little guarded in his interactions with us. He introduced himself and me and Paige. He saw that I sat ready with my notebook and pen– I my notebooks everywhere. Every appointment, scan, or consult, anything– I took notes. If you weren’t going to take notes about something as serious as this, what would you take notes about?
“What did you say your profession was?” The doctor asked.
“Civil engineer,” I replied.
“Ah,” he said and he relaxed a little bit. Perhaps he thought I worked in some sort of legal-based career.
He then launched into his analysis of my case. “Your immune system has most likely identified and eliminated the primary melanoma. You are a good candidate for ipinivo [this is an abbreviation of the two drugs that make up immunotherapy: ipilimumab and nivolumab] and I would recommend upfront treatment. The immunotherapy will “reprogram” your immune system. I’ll discuss the side effects a little later. I would recommend stereotatic radiation for your brain resection site.
I would not recommend surgery on your lung to remove the nodule. You are too close to your previous major surgery to engage in another surgery without more recovery time. From a melanoma treatment prospective, it is not good practice to chase after lesions with surgery. You need a full systematic approach to the melanoma in your body. Even with surgery and a pathology report that indicates clear margins, you are still potentially leaving cancer cells behind to spread to other places. Also, we have also seen that lesions of melanoma in the lung respond more readily to immunotherapy. Typically patients start immunotherapy fourteen days after the first tumor is found.
As for the side effects, all of them were auto-immune. The most common side effects are colitis, dermatitis (rash), inflammation of the liver, lung inflammation, inflammation of the thyroid and pituitary gland. Most side effects develop in the first phase of immunotherapy treatment. But even patients that only make it through one treatment due to adverse side effects still show good immune responses to the melanoma.”
I asked about the lung tumor over time. If not now, would it ever need to be removed?
“You want to treat the tumor, stabilize it, and then remove.” He drew a graph and I copied it down. “Treat it, remove it in maybe two years.”
“Do not have a dermatologist remove the lesions! The lesions are good markers to tract the progress of the immunotherapy treatment.”
We asked about the timing of beginning immunotherapy and the stereotatic radiation. We had heard that there would need to be a two week lag between the two, which stereotatic radiation coming first.
“There are no concerns about the timing of the two. If you were being treated here, you would have already had your radiation treatment and begun immunotherapy fourteen days after your tumor was found and diagnosed.”
Paige immediately picked up on the impact of this sentence but I didn’t.
The doctor asked us if he should begin to schedule the treatments there at Duke. When dealing with medical issues, it’s always easier to schedule and cancel, rather than wait until the dust settles and try to create the perfect schedule. So we asked him to move forward with scheduling treatments at Duke, except for the stereotatic radation which we already had a follow-up appointment made to get my mask made for the cyberknife procedure even though the procedure itself hadn’t been scheduled yet.
The doctor then performed a physical exam on me, examining my lymph nodes and performing a routine body scan. I will say, he was the only oncologist that had administered these tests to me. It gave me trust in his care and also made me question some of the care I was getting elsewhere.
The appointment was done and we were free to leave.
We trekked back to the wrong parking deck we’d parked in and headed home. We had a lot to discuss. First was the surgery. I had gone through a battery of tests and pushed the hospital to move heaven and earth to get it scheduled as soon as possible. And now we’ve been advised against having it. It was a quick decision. The expert had advised us not to go through with it and I was not eager at all to return to surgery after just having only partially recovered from major brain surgery just five weeks earlier. It was now 3pm on a Friday afternoon and the surgery was scheduled for Monday morning. I called the hospital and told them I would not be going through with the surgery. They said, “Okay,” and hung up. Done.
The next thing was a bigger item. During his assessment the expert doctor had said “If you were being treated here, you would have already had your radiation treatment and begun immunotherapy fourteen days after your tumor was found and diagnosed.” Reading between the lines, we were late. I should’ve already started immunotherapy. We didn’t even have my first treatment scheduled yet. How far behind were we? Had I missed my shot at curing myself of this disease? The story we had been told was that we needed my radiation treatment, then to wait two weeks, and then begin immunotherapy. If we went by that schedule, that was going to put us into beginning treatment in late June. Who knows how much spread would happen by the? My radiation treatment wasn’t even scheduled yet. Duke Cancer Center was offering to begin me on immunotherapy right away and was not concerned about the timing of the radiation treatment.
Where do we get treatment? Greenville, where my home and family are? Or Duke Cancer Center? Three and a half hours away when I can’t even drive. “Three and a half hours is nothing,” Paige would say. “If Duke can do it, we go to Duke.” And I knew she was right. The drive was a huge pain. Finding childcare for the kids would be very difficult. But if I had a chance of getting treatment at Duke faster I needed to take it. Even if it meant back-and-forth trips the entire summer.
So we came home to Paige’s sister taking care of Mina and Will. They had been binging through Avatar the Last Airbender, one of my favorite shows to watch together with them lately. We got the kids to bed and then collapsed. We had just finished out one of the most exhausting months of our lives. It felt like every second had been scheduled. And we knew that we had the weekend ahead of us, but come Monday I would need to start working to the phones to see who would be able to get me to treatment faster– Greenville or Duke.
We spent the weekend letting the kids play in the sprinklers for water time in the backyard, followed by popsicle treats. (I was not yet cleared to swim in the neighborhood pool with the condition of my head wound.)
Monday, June 3rd hit and I started working the phones. I also had the urgent MRI that afternoon, but getting the ball rolling on my treatment was the most urgent item on the checklist. First I called my Greenville cancer center and pushed for the earliest possible start for my immunotherapy treatment. This also meant my oncologist would be finding out I did not go to the surgery he recommended for me. Then I had to call Gibbs cancer center (different facility) to try to get a rush order on my stereotatic radiation treatment so I could begin the immunotherapy. I didn’t even have my MRI yet, which was later that afternoon, but scheduling these big ticket items is more than half the fight. They promised to look into it and call me back.
In the meantime I called Duke to see what was the soonest they could get me started on immunotherapy. That would mean I would be transferring the entirety of my treatment to Duke Cancer Center– a three and a half hour drive from my home. Similar to Greenville, they promised to look into it and call me back. If Duke won out, that would mean an entire summer of three and a half hour drives every three weeks– hotel stays, coordinating childcare, lots of logistical considerations, but worth it if it meant getting the treatment I needed.
That afternoon (June 3rd) I had my first MRI since my hospital stay in April. This particular test called for “with and without contrast.” It’s the same procedure, going through the claustrophobic 1990s internet dial-up / jackhammer sound for twenty minutes except for the last ten minutes they inject your arm with a sugary contrast dye the is supposed to show “hot-spots” or lesions in the area of your brain. I had started practicing loving-kindness meditations during my MRIs and PET scans. The meditations helped to block out the constant machine noise and help me visualize something positive and meaningful. There have also been a number of articles and some evidence-based studies touting loving-kindness meditations for their positive well-being benefits. My brain needs all of the help it can get, so if loving-kindness meditations even slightly helped some “re-wiring”, I was going for it.
After the MRI I got a call back from Duke. They would be happy to provide all of my treatment but it would take them two more weeks before I could have my first immunotherapy infusion. This was all due to health insurance red-tape. The infusion consists of two IV bags of very expensive drugs– somewhere around $20,000 to $40,000 per bag, so it requires a lot of paper approval before anyone can start sticking needles in my arms and pumping me full of this potential home-run treatment. (And keep in mind, the entire treatment consists of four infusions over three weeks, so lots of money on the line.) That meant that the earliest I would be able to get into to Duke for treatment would be late June, which wasn’t ideal.
Almost immediately I got a call from the Greenville hospital system that had been treating me up to this point. They could schedule my first infusion for June 10th, the very next Monday.
I still didn’t have a scheduled radiation treatment appointment, which up to this point Greenville was insisting was necessary before the first infusion, but now they were not pushing that as a prerequisite requirement. According to them, I could have my radiation treatment after the first immunotherapy treatment. This echoed what my Duke melanoma expert doctor had said about the timing between radiation treatment and beginning immunotherapy infusions.
I didn’t mean to pit Duke versus my Greenville hospital cancer center. But I had and Greenville won. A part of me was very relieved. I wouldn’t have to do all that travel and organize all those logistics. I had some friends reach out that lived close to the Durham area and offer me a bedroom, which was incredibly considerate, but I was so happy that I could remain close to my wife, kids, and own home during this whole season of treatment.
In the back of my mind was the thought that “What if the treatment didn’t work?” And I had spent four months of my live traveling back and forth to a distant city, away from my family, for a gamble that would all be for nothing. Fortunately, that wouldn’t be something I would have to dwell on.
Talking to doctors, and doctor friends, everyone agreed– there are no differences between the drugs they give you at Duke and the drugs they’ll give you in Greenville.
While the consultations were very different, the treatment would be the same. So in that sense, locality did not matter. It’s also worth mentioning that no egos were bruised in the process of making this decision. I had been clear with my oncologist about my trip to Duke– he even recommended some colleagues at a Mayo clinic. Even with the disagreement about the lung surgery, there was no sense of egotism, nor did I even sense him become territorial. I lauded my Greenville doctor for this and he mentioned that the connections that the internet has brought has had a lot to do with not feeling the need to be territorial or feeling compelled to save face. It’s helped medical professionals accomplish what they’ve dedicated their profession to do– help heal people in the best way possible, whether they’re involved it in or not.
So, we had a scheduled immunotherapy session. This was great! A big part of the treatment was falling into place but we still had a large piece of the big picture missing. I needed the radiation treatment to by brain to clear out any remaining cancer cells, and anything else there. The next day, Tuesday (June 4th), I had a follow-up appointment with my radiation oncologist to discuss the results of my MRI and schedule that treatment, now armed with the knowledge that I would be starting immunotherapy the very next week.
As I mentioned before, my radiation oncologist had a sense of urgency about him and that was not just for our first meeting. He shared the results of the MRI with us. There was not much to say about the cavity (where the tumor had been removed). He referred to this as the resection. No new movement, activity or lesions there. However, I had two new brain lesions that the MRI had picked up. One 6mm lesion in the left frontal lobe or my brain and on 4mm lesion in the right frontal lobe (close to where my original tumor had been).
This meant that in the time between my surgery and this MRI the cancer had been spreading. We were right to act with such urgency. What would’ve happened if we had dragged our feet on treatment? If we had gone through with the lung surgery and waited for the recovery time to begin treatment? If we hadn’t pushed so hard to schedule all of these scans, appointments, and second opinions? Cancer doesn’t care about status or class. Can you consider what it would take for all of the people in a position like this without the ability, financially, intellectually, socially or otherwise, to push for urgency and the right care?
It’s no wonder that cancer claims so many people– it fights using an asymmetrical guerrilla warfare style of destruction to a body and we’re using a bureaucratic institutional response to it– but it’s the best we’ve got.
My radiation oncologist did not have any reservations about the timing of the first immunotherapy treatment and my radiation treatment. I would definitely be having the immunotherapy treatment first, despite their initial recommendations that the radiation treatment come first. The two new lesions (the 4mm and 6mm ones) were tiny enough that radiation would have been the first method of treatment regardless. Those spots would be added to the cyberknife procedure. I would need an appointment to have a mask made (in order to keep my head very still) and the cyberknife procedure itself would either be this coming Friday (June 7th) or next Tuesday (June 11th, the day after my first immunotherapy infusion). He emphasized how much mathematical computer modeling goes into the planning of the procedure and given all that necessary computer crunching, it would probably be next Tuesday, June 11th.
We went home feeling good. The only thing that slightly bothered us was the fact that I would be getting my radiation treatment after my first immunotherapy treatment when initially the doctors all recommended a two week space between them. We were breaking some standard protocol. For an engineer and an English professor, going against norms causes anxiety. But this was the best shot we had, and it was amazing that these procedures were scheduled and my name was on the books. Things were falling into place. On the other hand, the cancer was spreading in my brain. We knew about the hot spots in my body– it was time to get this thing going if I was going to make it through this.
The next day, Wednesday June 5th, we had a scheduled follow-up with my neurosurgeon to check up on my head wound. I held this doctor, a fellow younger than myself, in very high regard. He had given me a new shot at life, however long that may or may not be. It was great to see him and discuss everything that had played out since the last month. He was happy to hear about our scheduled treatments. He agreed with the radiation treatment to the new lesions– they were too small to even consider surgery. He inspected my head wound and thought it was healing nicely. We even had discussions about the possibly of me starting to driving again and maybe even swimming in the neighborhood pool before too long.
We had two critical appointments for Thursday, June 6th– our forth day in a row of appointments, follow-ups, or scans. In the morning I had my appointment at the Spartanburg hospital system (Gibbs cancer center) to have my mask made for the cyberknife procedure. While I had pictured some sort of fortyfive minute mold / plaster procedure the entire process only took minutes minutes. A plastic ring is prepped to be malleable and then pressed onto your face and held for five minutes or so while it solidifies. The holes on the periphery of the mask lock in and secure to pegs found on the plank you have to lie on for the procedure. I blogged about it in the “Updates section” but here’s an image of what the finished product looks like.
The afternoon appointment was with the our main Greenville cancer center and consisted of a series of prerequisites before beginning chemotherapy treatment.
This is confusing but worth writing out. Sometimes chemotherapy and immunotherapy are used interchangeably even though they are different procedures utilizing different drugs. So even though I was going to begin immunotherapy on Monday June 10th, I still needed to take a chemotherapy prep course through the cancer center. Technically immunotherapy falls under the umbrella of chemotherapy.
The chemotherapy prep course consisted of information and any follow-up questions with three different cancer center staff members. A social worker, a financial counselor, and a pharmacist. During my discussion with the social worker I learned that technically I was considered an adolescent and young adult cancer survivor. This is extended to anyone under the age of forty (I was thirty eight at the time with a birthday the next week). The adolescent and young adult label granted me different waiting rooms, a larger room for infusions with TVs and gaming systems, and other warm and fuzzy benefits– if I chose or asked to use those offerings. (The only thing I ended up utilizing was the adolescent and young adult waiting area which had comfy chairs and was quiet. The larger waiting area was surrounded with TVs on loud volume settings always playing reruns of Murder She Wrote or Barkitecture (I’m not joking)). The rest of the social worker talk consisted of various programs the cancer center offers (Music for Cancer Survivors, Yoga for Cancer Survivors, etc). For me, I did not feel compelled to be around other survivors at this point. This part of my journey felt like it should just between myself, Paige, and my kids at this point. I didn’t think I would be able to handle the weight of making a close friend out of another cancer survivor only to have that friend take a turn for the worst somehow. It’s selfish but my focus was my healing.
I had blown past my out-of-pocket max for my health insurance plan so the talk with the financial counselor was very quick.
The talk with the pharmacist just went into the preparation of the IV drugs for the infusions I would be having for my treatments. First they would perform a blood draw for lab work and if everything checked out, then they would mix the drugs, and perform the infusion. All of this would happen within the cancer center pharmacy. I didn’t know it at the time, but as I mentioned earlier, these drugs go for about $20,000-$40,000 per bag and two are needed for a treatment. So, yes, there’s a lot of procedure that goes into making sure your body can handle what it’s about to get.
I got a binder full of materials from each staff member with their specific program items and that was it. We headed home. We were done with appointments for the week and that was hard to believe. My next appointment would be an immunotherapy infusion on Monday, June 10th. This was what we had been fighting hard for since mid-May. After Duke, we knew we were behind. We knew we had to push. Now we’d done it, and the runway was cleared for take-off. We felt very good but, of course, the ominous questions still lingered. Had we acted fast enough? Would I fall into the fifty percent of efficacy for the treatment? Would having the first infusion and radiation treatment in back-to-back days have any negative effects?
All of those were questions we were walking around with but we dwell on them. We had done everything we could. Everything. My only focus now was meditation and diet. By this point I was meditating multiple times a day and had switched to an entirely plant-based diet.
The meditation space felt blissful. It was an activity I could engage in and all of the attention, negative sensations, or feelings in my head would stop. I couldn’t drive, or do extreme exercises, or even go swimming with the kids at the neighborhood pool but I could meditate. All of the queues and phrases that the meditation guides always used now crystallized during the sessions. The breath kept me present. Every day I could enter a retreat of health and wellness in my own mind.
The other thing I could exert control over was my diet. A family friend lent me a book called How Not to Die: Discover the Foods Scientifically Proven to Prevent and Reserve Disease. The same friend also brought me to a vegan potluck meal. When you face something as monstrous as cancer and are looking for lifestyle choices to help your chances, your skepticism shield should melt a way a bit. I once told a friend that if someone told me that dancing naked in the middle of the road would help get rid of my cancer, I’d do it. So it wasn’t difficult to embrace the health benefits presented to me that come with a lifestyle of eating plant-based, animal hormone-free food. And really, restaurants make it very easy now. I’ve found that nearly every restaurant has an option that’s meat and dairy free, and that the cooking staff has always been accommodating if I requested something a little different. And when it came to family trying to cook me large meat and/or dairy-filled home-cooked meals, I could always just say, “Sorry, cancer,” and eat a peanut butter sandwich guilt-free. (It was the same with desserts and drinks since I gave up added-sugar and alcohol too.) Especially after major brain surgery, alcohol was too risky. I could make myself dizzy by spinning myself around in a circle– I didn’t need to add alcohol to the mix to make things worse. There’s a lot of back-and-forth about alcohol and cancer, but I decided it wasn’t worth the risk for me.
I credit meditation, mindfulness, and a plant-based diet with a large part of my healing.
Monday June 10th, now embracing a lifestyle of meditation and a plant-based diet, we walked into the cancer center for my first immunotherapy treatment. I blogged about this in the “Updates Section”. When you’re in-and-out of medical facilities your birthday and home address become your identifier– more so than your own name. So the nurse arrives who is going to perform my infusion and asks me to confirm my birthday and address. I had just had a birthday (I turned thirty-nine, so technically I was still an adolescent and young adult cancer survivor), so a part of of me was expecting, “Well, happy late birthday.” But this nurse was no-nonsense. That’s okay. This first infusion was the best birthday gift I could be getting. The infusion nurse took a blood draw, tested it to make sure I was okay to receive the drugs, the drug IV bags were then mixed on-site at the cancer center pharmacy. The infusion nurse then appeared with the IV bags. She was dressed head-to-toe in protective coverings including a face mask and safety glasses. She donned latex gloves while another nurse (also covered head-to-toe in protective coverings, also with face mask and safety glasses) joined her. She questioned my name, birthday, and address which I confirmed. She then read aloud the name and dosage of the IV bag that she was preparing for the infusion. The second nurse listened, and signed off as a witness that everything was correct. The infusion nurse, dressed as if prepared for radioactive fallout, then took the IV bag and connected it to the IV tethered to the vein in my arm. Whatever the hell this was, it was now coursing through my veins. And I couldn’t have been be more relieved.
The first bag took a half-hour, then I had to wait to ensure I didn’t have any adverse reactions– this was a first-time-only thing. Then they repeated the same procedure for the second IV bag of drugs. That bag took about a half-hour and then I was done.
We had done it. Whatever this stuff was, it was now in my body– potentially working its magic. We had given myself the best shot at a systematic solution, potentially a cure for my cancer. Would it work? Who knew. I didn’t even have the energy to dwell on it. I took a page from the stoics– focus on what you can control and lead a good and virtuous life. I went home and meditated.
The next day, Tuesday, was my stereotatic radiation treatment. One forty-five minute session. As mentioned earlier, I wrote about this in the “Updates Section” but for simplicity here’s what’s there:
“[I received] [s]tereotatic radiation to three spots in my brain. One for the cavity, and two for the recent 4mm and 6mm spots they identified last week. I am going to post pictures of the mask I had to wear (which I got to take home) and the view from the conference room-style “observation room” where Paige sat and watched. They were happy to ask what Pandora station I wanted. I asked for Bach (if you listen to classical music, especially Bach, that is at 70 beats-per-minute, your heart rate will automatically sync with the music. I wanted to be calm and at peace for this.) The procedure was 35-40 minutes long. I kept my eyes closed the entire time.”
I was escorted into the procedure room and the technician walked me through what would happen and asked my music preference for the pandora station. She had spotted the book I was reading at the time and told me she was reading the same book (Living Buddha, Living Christ). I laid down on flat on the plank and was strapped in, with the masked locked into place around my head and face. The procedure started. It’s strange. (Of course, it’s strange!) Nothing actually touches you. You can hear these machines moving around to match whatever pre-programmed course they follow to aim radiation directly in to the pre-determined spots on your head. Sometimes the table you are lying on has to move up or down. They told me that the table would probably tilt by five degrees sometimes, but I never felt that. The sense of sound is the sensory element. It was quite peaceful. I mediated and listened to the music the technician had queued up for me. After the procedure I felt fine. I gave the radiologist technician a hug. I saw the doctor and he talked about side effects, and advised me not to go bungee-jumping, sky-diving, or base-jumping that day. We set appointments for eight weeks out. Those appointments would be a brain MRI and then a follow-up to discuss the results.
My radiation oncologist did set expectations for that follow-up appointment. He is not going to come in and say the results are “all clear.” The most ideal scenario is that he will say the results show scaring where we wanted them to. He said to think of it like skin cancer. You surgically remove the suspicious spot but there is always a scar left from surgery- your skin isn’t clear. It’s like that, except with your brain.
I walked out of the hospital feeling fine. I took it easy the rest of the day but still felt okay. Then, after the kids were in bed, 9pm rolled around and I felt like I was hit by a train. I was so cold. Then I was so hot. My head hurt. I took Tylenol PM but still couldn’t sleep. I did not want a fever. If I got a fever of 100.5 degrees or higher, I’d have to call it in to the Cancer Center. And I did not want to risk be taken off these drugs. It was a rough night.
I was still laid out when morning came. Paige had to handle the kids and get them off to daycare or camp. I slept in til 10:30am. But I woke up feeling much, much better. I called the nurses’ number and she said fatigue for 24-48 hours was the most common side-effect. Boy, I’ll tell you, radiation into your brain will give you a heck of a bad night.
Our collection of work, set it motion on a Thursday morning on April 18th, was done. We’d done all we knew to do. I had drugs in my body and radiation in my brain, in addition to recovering from the major brain surgery in during which my neurosurgeon was able to completely remove my 2.5cm tumor instead of merely being able to only biopsy it.
When you are fighting something terminal like cancer all you can do it chase the treatments you feel are right. Yes, I could always meditate more or try to fine-tune my diet even more rigorously, but the bulk of the work was the medical treatments– I had received them and hopefully I had received them fast enough to make a difference in the final outcome. Now there was no worrying, no fretting, no wringing of hands or frantic phone calls. I spent most of my time simply sitting and looking out my living room window, since my screen time was severely limited due to effects of the brain surgery. The quote below become ingrained in my soul with each passing day, each hour looking out the window.
Nature does not hurry, yet everything is accomplished.
Lao Tzu
I would wake up each morning and make myself a large plate of fruit, go outside, eat it slowly, and listen to an audiobook or lecture. There was a lot of meditation. I did start going to see a therapist to talk about everything I’d been through. I started this blog– telling myself I could still do something on a weekly schedule (and then alternately using it as a platform to provide letters to my children in case my treatment wasn’t effective).
We waited for any side effects. There were some joint aches and pains, but besides that nothing else. The subcutaneous tumor found the the middle of my back actually became more solid and rigid. There was nothing more or less noticeable with the other subcutaneous tumors. Was that a bad sign? (Much later, through this documentary, I would learn that this is actually part of the process of the immunotherapy working.) But for the moment I was having no severe reactions and it was looking like I would make it to the second infusion. One down, three to go. I kept remembering that my Duke expert doctor had said that peoples’ immune system starting responding even if they’d only made it through one treatment.
The next infusion was on Monday, July 1st. Now we were finding the rhythm to this medical dance. Except this time they would be using my port instead of putting an IV into my arm. The port-a-cath is like a USB drive for your body. I blogged and described it in more detail in the “Updates” section here (this links described the surgery to install it, but there was a tiny bit of drama) and here (description of an infusion utilizing the port). This allowed me to move my arms freely to read a book or play a game on my Nintendo switch.
We waited for any adverse reactions after the second infusion. Fortunately, there was nothing to report. Even the joint aches and pains from the first infusion did not present themselves. I did start to lose some hair around the areas where I had received my stereotatic radiation treatment. Some of the surrounding hair turned grey in the areas where I didn’t completely lose patches of hair.
I remember having lunch with a friend who remarked, “Wow, your hair is so grey now!” and I remember telling him, “That’s what happens when you see God.”
For the record, I do take my hair way too seriously but I do not care about it being grey at all. Grey hair means age. Age, for me, would be a blessing.
Paige now noticed that the subcutaneous tumor found the the middle of my back couldn’t be found. Had it disappeared? We were imagining this? Were we looking in the wrong spot? We searched but couldn’t find it. This started happening with the other subcutaneous tumor spots. What was happening in my right lung was anyone’s guess. We brought this up with my oncologist but we were careful not to jump to any conclusions. “That can’t be anything but positive,” was all he could say. The only definitive conclusions about the treatment would come from the PET scan scheduled for scheduled for August 29th, with the follow-up appointment to discuss results September 3rd (that included a long break over the Labor Day weekend).
The third infusion was Monday, July 22nd. It came and went with little to report. Each appointment for an infusion was a milestone. More of these drugs were entering my body and working their magic. So far I was having no side effects at all, and that was incredible. My body was feeling very good. I couldn’t believe I was a person walking around fighting cancer– I felt more like someone procrastinating about joining a crossfit gym. At the same time my friends were telling me not to become a crossfit-vegan, or they’d have to rethink our friendship.
I also started returning to work on a very limited part-time basis around this time. Everyone was supportive of my limitations and schedule.
When I underwent the cyberknife procedure (the stereotatic radiation to the lesions found in my brain), the diagnostic test to determine its efficacy would need to be three months out. This meant that I would know if my head and brain were free of cancer before I would know the same of my body. The brain MRI with-and-without-contrast was scheduled for Thursday, August 8th.
Before the MRI on Thursday, August 8th, I planned a visit to my hometown of Tampa, Florida to see friends and family. Our family spent a couple days at the beach and we had the chance to all go to my childhood summer camp. It was an amazing experience and friends traveled from all over the country to join us. These were the friends I had grown up with– some from school but all from our church youth group. We had managed to keep in touch over the years, despite the odds. One of my friends took on the un-official role of rallying “the troops.” My time there was so serene and peaceful. I lived in the moment every second I was there despite not knowing what my future held. I could feel the peace, serenity, and Spirit found in nature and the camp around every corner. It led me to write one of my most popular blog posts, Camp is a Pure Land.
I don’t know what it was, maybe the air travel or the just having a full slate of activities, but my head started to pound. It was nowhere near the sensation of the white-hot pain that the tumor had caused in April. But still, there was a sense of pressure. I was reluctant to take headache medicine since I was downing those like candy before my hospitalization and diagnosis. On a pain-scale, it was low. They always ask you to rate your pain during appointments. I would say this pressure pain was a two or three out of ten. But I always underrate these things. When asked about the white-hot migrate pain caused by the 2.5cm tumor that was pressing one side of my brain against my skull, I had said it was an eight.
So I was slightly uneasy going into my Thursday, August 8th brain MRI that would show the efficacy of the radiation treatment. I tried to take a page from the Stoics and focus only I what I could control– I meditated, prayed, and took lots of time to look out of my living room window watch nature slowly accomplish her tasks. For some reason I always saw lots of red-tailed hawks. I don’t know if it was the specific trees in our neighborhood or just our particular area, but I would see red-tailed hawks daily. I knew that the ancient Greeks and Romans would read into birds as omens of the future. It was difficult not to indulge in this superstition a little bit. A hawk couldn’t be bad right? What does a hawk represent? Vigilance? Watchfulness?
I laid down on the MRI table and began to go through my loving-kindness meditations. This time I decided to do these meditations through deep time. I usually go through my immediate and extended family– one at a time and then all together. But this time I went through everyone in the preset, deep past, and deep future (within the limits of my imagination). I would keep performing this routine for future MRIs. I walked out and drove home when the scan was done– I had done all I could do.
Last infusion was Monday, August 12th. By this point we had the routine down. I had my books, music, and Nintendo switch ready. It felt great to be going into my final treatment– I had made it this far with no side effects. I was receiving the full regimen of suggested treatments, giving my body the best shot at a response. If my body responded well, the next part of the protocol called for two years of maintenance infusions. That would consists of an infusion of only one of the drugs once a month for two years. But for the moment we needed to focus on the last infusion and see what effect a season’s worth of treatment would have on my body.
There are a lot of ceremonial exercises around cancer centers to celebrate last treatments. Some have you ring a bell while everyone within ear-shot claps, some have you create a bracelet or necklace and you get a bead or charm of a different color depending on what type of treatment you completed that day. Some have family gatherings outside of the cancer center for celebrations. I never rang any bells, gathered any beads, or had a family party to celebrate. It was always just us walking out the door, feeling a sense of hope and gratitude– and that was enough.
My follow-up MRI appointment to discuss results was Tuesday, August 13th. I would know what was happening with my head and brain before my body. That sat well with me. Since the beginning, I’d been more nervous about losing cognitive ability than physical ability.
All the news was good. There were no signs of cancer cells in the cavity where my brain tumor had been. The 4mm lesion that appeared in May was now “imperceivable.” And the 6mm lesion from May showed a “near complete response” (translated as: significantly smaller, it was disappear entirely in future MRIs). My radiation oncologist even used the term, “home run.”
There were no new lesions. There is was no growth. The areas that were treated had showed a response. And the chances of further metastases to my brain were thought to be minimal (as in, less than 5%).
The brain images below give you an idea of what this actually looks like.
This is was a huge relief and provided a big boost for one critical part of the problem. I was so apprehensive about radiation treatment to my brain. Now, on the other side of it, I’m so happy with the doctor who oversaw my care and his steadfast belief in the effectiveness of his craft. I was awestruck at what modern medicine is capable of. People are not exaggerating when they say that cancer treatment has progressed at the speed of light within the last decade.
Next up was the PET scan Thursday August 29th, and the follow-up results appointment set for Tuesday, September 3rd (the day after the Labor Day holiday).
For the PET scan I repeated the same practice I started during the last MRI. I did loving-kindness meditations but then repeated them in deep time as best as my consciousness and imagination would allow. The preparation for the scan was very cut-and-dry. There were no issues getting the radioactive sugar injection in me like the first PET scan. The PET scan tech and I were on a first-name basis now and this is when he told me he’d been haunted by that first five-time fail injection experience. Pro-tip: always go out of your way to remember the names of the people you’ll be seeing a lot at the cancer center. From the nurse who simply checks your vitals, to PET scan techs, to the HIPAA / insurance administrator– being the favorite patient never hurts your chances.
You always leave the MRI and PET scan and want to look at the techs and say, “So…all good?” But, you can’t. And they can’t say anything. Your scans go to a radiologist who pours over your scans and write a comprehensive report on its findings. Yes, even a tech can tell if you light up like a Christmas tree during your PET or MRI but don’t put them in that position to share that with you. Respect his or her role and if something is urgent, someone will tell you same-day.
I remember leaving the PET scan feeling very good. I was confident. I wasn’t arrogant about the results- I’d learned that nothing in life was guaranteed. But I felt a sense of peace and serenity. We’d done everything we could. We raced to get treatment and we got it. I’d transformed myself into a plant-based, no sugar, no alcohol body who practiced daily meditation and buried himself in spiritual teachings. I’d never felt better in my life.
Whatever was happening in the news meant nothing to me. I had mostly disconnected from social media even before April. I had some posts to instagram to share some news and pictures but then I deleted the app from my phone. Books and music had become my news.
Since the PET scan was performed on a Thursday, August 29th that meant that I wouldn’t get the results until after the long weekend since Monday September 2nd was Labor Day. Since you’re injected with radioactive sugar, and then have to drink a strange sugary water mix on top of that so PET scans can take it out of you. They advise you to spend the next day drinking a lot of water. I remember that Friday. The kids had gone to school and daycare, and Paige was teaching at University. I felt tired and laid down for some rest.
My phone rang and I could see that it was the cancer center calling. This either meant that something was really good or really bad. If it was bad, they were calling because, most likely, I needed something before the long weekend hit. I really didn’t want to have to check-in to a hospital, give up driving, and say goodbye to this next life I’d just built. But that’s part of the deal when you’re in this struggle with cancer. I thought through all of this in the three second it took for me to pick up the phone and answer.
It was my oncologist. “I wanted to call and tell you everything looks good. I didn’t want you to have to wait over the long weekend to hear that. We can go over the details at our appointment next Tuesday but everything looks good, so enjoy your weekend.”
I thanked him profusely, especially for going out of his way to make the phone call, and hung up.
You’d think I’d leap out of bed and dance like a wild-man and shout a joyful chorus from the rooftops, right?
Nope. I just went back to sleep. I don’t know what it was and I don’t want to sound ungrateful but I just knew that this would be the case. I just knew somehow that for this moment I could rest in complete peace.
I didn’t rest much longer. Of course, the first thing I did after getting up was to tell Paige. We knew the results but we also decided to wait to tell everyone else, even close family. This was our moment. As far as anyone else went, they could wait. I know there were a lot of prayers, worries, and positive energy being sent my way, but for this short span of days, this privileged information was ours to reflect on and to share later.
We had the results follow-up appointment at the cancer center Tuesday September 3rd, and we learned that my PET scan came back with phenomenal results. The melanoma had not spread anywhere new. Of the existing six tumors that lit up previously, only 1 tumor showed up on this PET scan, registering at 5mm (down from 1.2cm in May). 5mm is also the smallest measurement a PET scan can pick up. This was the nodule in my right lung. I don’t have pictures of the scans to share with you, but I will tell you that the May PET scan of this nodule and the August PET scan are night-and-day. My oncologist even remarked that they wouldn’t even have noticed if they weren’t looking for it. The term “remission” was used (more on that in a bit).
I had “graduated” from treatment and was now into maintenance treatments for immunotherapy. This meant I would get an infusion of one drug once a month (as opposed to the two drugs every three weeks during the summer). This would continue for the next two years with periodic monitoring (more MRIs, more PET scans, etc.) that will stretch to longer intervals as time passed with more good results.
This day, Tuesday September 3rd, I had received my first maintenance treatment before the official follow-up results appointment. I didn’t know it at the time, but that would also be my last maintenance treatment. The single drug, OPDIVO (nivolumab), would introduce a toxicity into my body that would end up creating another epic struggle (one that I’m still dealing with). When dealing with cancer, the treatment itself can cause a lot of damage that requires years of healing. This was now the case with me. But that’s a chapter in this story for another time.
But going back to the results– we were in uncharted territory here. Melanoma is such a bizarre, strange form of cancer that there isn’t a lot of data to draw from to derive clear-cut definitions like “remission.” It’s only been the last six to seven years that have seen advanced-stage cancer survivors do very well with immunotherapy treatment used against melanoma. There aren’t any stories profiling survivors spanning multiple decades because this is so new. It’s incredible. It’s a reason I’m writing this blog.
At my first follow-up with my dermatologist in May he had told me how recently effective melanoma treatments had come into practice. “Six or seven years ago, we’d have told you, ‘Sorry. Go fishing.'” I heard there was a lot of “Get your affairs in order,” advice as recently as a half-decade back, especially with metastatic melanoma that had metastasized to the brain. Going back to the immunotherapy documentary I’ve touted so much, the man behind the breakthrough received his Nobel prize in 2018. 2018! A year before my diagnosis.
Stage IV melanoma is not a death sentence. Cancer is not a death sentence. I hope if you’ve read this far that you will take that with you. It will affect someone you love, someone in your family, and maybe yourself one day. It’s not going anyway anytime soon. I hope there are lessons you can take away from my story that may help you in your encounters with cancer in your life. Act with a sense of urgency, be your own advocate, be open to change, and live in the moment. Despite its ubiquity, we keep gaining ground on cancer. Treatments like immunotherapy and the drive of scientists like Dr. Jim Allison, professionals like Dr. Rachel Humphrey and the whole team of professionals scientists, and clinical trial volunteers that worked with Dr. Jim Allison show that advancements in cancer treatments can change in at a rapid pace– it’s not glacially slow, like I had thought before being forced to enter this world. People are working hard everyday to beat all forms of cancer. They won’t stop. We won’t stop. We will defeat you, cancer.
I will keep writing about my story and stories of other cancer survivors. As I alluded to earlier, there are other struggles of my own that are worth sharing that don’t fit here. There’s my struggle with immunotherapy-induced hepatitis that began as soon as I received the good news about the efficacy of my summer full of treatments. There’s my struggle with necrosis caused my the stereotatic radiation treatment to my brain. I am still dealing with those struggles and the aftershocks of them today. But I’m still here to share openly and write about it. I am still full of gratitude and hope.
I originally wrote this draft of my experience and called it “My Journey.” I published it on May 20th, 2019, the day before my first PET scan and before knowing the extent of how the cancer had spread through my body. In the original post, I closed the +12,000 word piece (now +26,000 words) with the paragraph below. I still think it’s worth keeping at the end.
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 26,000+ 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 john@johncatoe.com with any comment, questions, cries of joy, or shouts of anguish.
Grace and Peace,
-John