January 27, 2021 was my surgery date. It was hard dealing with it as the time drew closer. “Total Gastrectomy” just sounds as brutal and traumatic as it was. But it had to happen. For a moment I thought about resisting. FLOT Chemotherapy was successful. They described my response to it as “remarkable”. My stomach was working again. I could eat like a king. Do they really have to remove my stomach?
Yes, they do. It was my decision in the end. I had nothing to battle against the fact. Chemotherapy didn’t rid the stomach of cancer 100%. Close but not enough. It would grow back. Possibly more aggressively. All the cancer-starvation techniques out there require a well-working digestive system. The consequences are severe and irreversible. My decision.
My last full meal was braised lamb shanks, from pastured, local, coastal lamb. I took great care in preparing that recipe. I remember much of it. I ate the whole shank. It was a pretty calm evening. I had my bags ready for a week in the hospital. I went down the checklist, showered up, and went to bed. And cried. A lot. This was my last night as a complete human being. I read many accounts of others who recently went through the experience, and was confident that I will be ok. But it was terrifying anyways. I had anxiety attacks, worrying about being pinned to a bloody and sweaty hospital bed, gutted and dizzy, unable to move. I worked through those thoughts the best I could, and got a little sleep that night. My wife comforted me each time, and I have her to thank so many times for getting me through these attacks. Life has not been easy for her either.
We got up early, dropped the kid off at preschool, and headed up to Stanford Hospital. The campus was eerie. Normally, it would be bustling with people of all ages but all dressed in white lab coats, having breakfast, riding bicycles, being doctors, doing doctor stuff. But because this time was the height of Covid deaths, everything was cleared. There were at most a half dozen people outdoors in the plaza, and the massive atrium was a large, empty cavern. It was the creepiest check-in ever. My wife was not allowed into the hospital. So I kissed her goodbye, and we held each other for a few minutes, being in a small shock that she couldn’t even come in and visit during my stay.
I checked in, and found my waiting gurney, and realized that I hadn’t completed my paperwork for my Advanced Directive. I panicked a little bit, mostly irrationally, and Carmen made a few calls. She reached the hospital chaplain, who said he would find me and help out. He was the best person to happen to run into. While I didn’t get the Advance Directive sorted, we talked for over an hour about all these fears and anxieties I have been having. I spoke with an administrator who requested some forms to be signed so that they can use my stomach for research, and that was that.
So the time has arrived, and it’s time to get knocked out and wake up with a new life. And that’s how fast it happened. I had many surgeries before due to a bad knee, so I was used to getting knocked out. However waking up after this surgery was something different. I came to and it felt like the usual, but then the pain set in once they disconnected me from anesthesia. I had never experienced pain like that in my life. I just started to shout “it hurts! it hurts! make it stop!”, as my entire abdomen just started raging with pain. It really let me know what I had just gone through. After they transferred me to the gurney, they connected the pain meds and I was ok. I had the “green button” for the next few days, and I was pretty trigger-happy.
I didn’t move for about 2 days. I had tubes connected everywhere, so it’s not like I could move if I wanted to. That first night, I shifted a bit and alarms went off and a night nurse immediately came in and warned me about any motion that first night.
By the way, the nurses at Stanford are amazing. At the surgery center, or at the chemotherapy center, they are compassionate, friendly, and aware of your situation. One nurse showed me her own belly scar from having colon cancer as a teenager. Another nurse understood completely as I told her how I’m looking for ways to speed up the raising of my daughter, just in case. My peers don’t want to hear that kind of talk. But thats the talking that I have to do now. And with Covid making my stay basically an isolation period, the nurses were all whom I had to talk to, and they listened.
I spent the week recovering at the surgery center with the main focus on pain management, getting mobile, and making my new digestion system come online. Pain management was difficult. When they stopped the pain meds, I couldn’t sleep, and I couldn’t heal. It was tough. Twenty years ago, doctors threw any pain drug at you and very liberally. Now though, after the opioid crisis, doctors are very apprehensive about prescribing pain medication. But we managed to find a balance, and I was able to manage the pain.
Getting mobile was tough as well. I had this new 10-inch scar on my belly, and lots of things rearranged internally. When I was on pain meds, I could walk, climb stairs, sit up, and so on. Off pain meds, I couldn’t even stand. But after some time, I also found a balance and began my physical recovery as best as I could.
Starting up my new digestion system was obviously difficult. The first thing I ate was a nasty barium drink while propped in front of an X-ray machine. They performed a swallow test to make sure things don’t leak. A metaphor I often use to describe how I feel now is that of an old used car. An early 2000s Volkswagen Passat is probably the best metaphor. Leaks everywhere, doesn’t always start up. Breaks down often. Smells like gas. But cleans up well…
I had to start with a sip of water. I had been hydrated by IV fluids for the last 4 days. It went ok. It felt weird. I could feel the water trickle down my pipes much further than it had before. Then I felt a little irritated. The feeling of cold water hitting my intestine. No acids, no getting warmed up in a stomach. It felt inorganic. I didn’t take many pictures but I did get some footage of my first meal:
There was a pause on my eating recovery on account of my blood test showing I was extremely low on potassium. So low that they put 4 bags of liquid potassium into my IV. It was caustic enough that it burned my arm. They had to switch to my chemo port and a diluted solution. A hard lump was left on my arms for several weeks after that. During this time I was extremely thirsty. Like an old western movie that has a shot cowboy dying of thirst in the desert kind of thirsty. I was begging my nurse for just sip. Pleeeeease! Just one sip. I beg you… Finally, 4 hours later, I got a sip of tea. Best drink I ever had. And I don’t like tea.
Anyways my discharge orders were dependent on me successfully eating and digesting food. The assistant pointed to the extremely small list of items I can try on the hospital menu. I went with cream of chicken soup. It went down ok, and I felt a little human again, actually eating something. The second meal didn’t go over as well. I had plain yogurt and it caused a lot of upset. Apparently yogurt isn’t the go-to digestif anymore. I still can’t handle it.
Up next was confirmation by Occupational Therapy that I was capable of moving about myself, and I missed my family so much that I did my best to cover up any pain (a lot), and showed that I could get out of bed, walk around, climb stairs, and so on until they approved my release. It was nice moving around. Stanford has a lot of fine art where they park all their cash in, so much of it that you can be sitting in a waiting room next to a $100,000 art piece. So on my walk I discussed art with my therapist as we walked by each piece. That was nice, I felt human once again.
Finally, my wife has arrived and I get to go home. A week of isolation, fear, anxiety, pain, blood, you name it. I so badly wanted to go home. And I did. And now the real recovery must begin.