A Submariner's Take on Chemotherapy

Spoiler alert: I fucking love it.

                                                                                                                                                         March 2022           

A Submariner’s Take on Chemo and Multiple Myeloma

So here I am, 21 days after an MRI showed that multiple myeloma had eaten away my T2/T3 vertebrae and threatened to collapse my spinal cord and paralyze me. Phone calls were made. The most skilled humans who have ever lived to solve spinal cancer problems did emergency surgery to stabilize my spine within 36 hrs. Biopsies were taken. Medical imaging was done and astronomical hospital bills were incurred. I have no paralysis whatsoever. And transcendental experiences were had and written about.   

My friends and family now ask me the question: how are you feeling about chemotherapy?

Let’s be clear. I fucking love it. I almost die (or get severely paralyzed) because of a failed spine. Some humans I’ve never met get together and say, “hold my beer, I got this” and fuse my spine on a Sunday morning. Now, another wizard human (known more colloquially as the Medical Oncologist), says “if you drink this elixir I’ve been perfecting, you might feel a bit woozy but after that we’re pretty sure you’re going to make a full recovery. What say you?” 

Yes please. This medical oncologist, and others like him, paid attention in undergrad biochemistry, unlike me in my engineering classes. He likely didn’t close down the pub or stumble into class the next morning as frequently as I did. He was probably responsible adulting a lot earlier than I was, and now has the solution to what ails me. My only appropriate response is: “I acknowledge it is the middle of the workday, but may I buy you a drink, sir?”

I need to invest a little effort to make sure I don’t mess up my end. This writing is my homework to make sure I have some idea what is going on. At a minimum I will show up, ingest the recommended chemicals, and heed lifestyle recommendations to make the drugs most effective. I will try not to complain excessively and remember that the alternative path was much bleaker. This means I need to have a mental model of how chemotherapy works. I do not need to understand biochemistry. I am not doing any mixing of potions or designing of molecules. I need to be compliant in this controlled experiment, manage my energy, and provide feedback to a complex optimization problem. In short: 1) show up. 2) drink what is in front of you. 3) provide blood samples and feedback to know that it is working. 4) repeat until cancer is in full remission.

The Problem to be Solved:

I have multiple myeloma in a higher concentration near my T2-T3 vertebrae where the main tumor was. Much of it was removed during the surgery to stabilize my spine. The vertebrae above and below these vertebrae might have higher concentrations of myeloma infused bone. This is concerning because the spongy bone is holding screws which are holding my spine up. CT scans showed that every bone in my body has some form of diffuse myeloma in it, threatening to weaken them over time. There are no other known major cancer sites. The good news is it was caught early at Stage 1, and is of a well-known and well-studied cell structure.

The Countermeasures (Therapies)

There are several broad ways to kill cancer cells.

To build this mental model, we need to take a little detour and understand something about…

The World War II Diesel-Powered Fleet Submarine

Gato-class submarine built in 1941-1943

These machines were marvels of their time and were manned by some of the saltiest sailors who ever went to sea. During the early parts of the Pacific War after Pearl Harbor, US submarines were the only US forces bringing sustained war to the Japanese Empire, sinking warships, merchant ships and threatening supply lines across Japanese-occupied islands. They spent most of their time on the surface, running with four diesel engines which sucked in fresh air. To avoid detection when attacking, or evading depth charge attack, these boats could submerge for some amount of time, usually hours, but up to two days if necessary.

Once they submerged deeper than the snorkel could ingest fresh air, the crew had the oxygen that was sealed in the people tank at the time of submerging. The CO2 concentration started going up with each exhaled breath. Unnecessary crew members were sent to bed. After 24 hours underwater, the air became unpleasant. After 48 hours, the air was nearly toxic and unbreathable. Time to come up.

Once the diesel engines stopped, the boat ran “on the battery” and creeped slowly on electric motors. The battery charge level was life. Every diesel boat captain to this day must salute to the only number that matters: battery charge % left. Ideally, you always keep your battery charge topped off around 100%. When you get into a situation when you need to draw from it, you have more options with a higher starting charge. A submarine on the battery has choices. It requires a certain % just to keep the lights on. The Gato-class boat above could creep about 2 knots for 48 hrs using electric motors. This meant it could creep 96 miles away. Or, it could run its motors at full tilt at 9 knots for around a couple hours before draining the batteries. You get the point, creep for a while or sprint for a burst. 

In the case of our WWII US Gato-class submarine, if it submerged with 100% battery charge, two days later, you would find it surfacing within a 100 mile radius circle before its battery charge dwindled to zero and its air became too foul to breathe. Battery charge, measured in amp-hours, is the capacity to do anything. So it is with personal energy management and chemo.

I usually operate somewhere between 75-95% battery charge. My normal life is a sawtooth pattern. I wake up, start drawing on the battery, recharge with meals, drain down the battery with work webex / zoom meetings, then recharge to new full while I sleep. Sometimes I’ll go a few nights with shorter sleep and hover between 70-80%, but then fully charge back to 99% over the weekend. Over an 8 month period, my charge levels might look like this: 

Cancer treatment, chemo in particular, draws down the battery a lot. I’m estimating 30-40% over the course of a 4 week chemo cycle, and even more over an 8 month course of treatment. This means I might be operating in a sawtooth between 30-60% at any given time. This is not the ideal energy configuration for doing deep, sustained, focused work. A reasonable goal might be to execute the plan of the day safely and politely and show signs of spirit and character for those around you. This energy pattern may persist for 6-9 months. “Chemo brain fog” is real and quantifiable. Acute pain draws down the battery significantly. So does anxiety, grief or severe depression. 

Below is the list of therapies and their timing. I will have 8 x 4 week cycles. Each cycle is designed for 3 weeks on, and one week of recovery. “X” marks when I will receive the therapy for that week. I will go in for chemo injections and infusion once per week, and take pills at home. Radiation will be a daily 10-day stretch.  

This chemo treatment is a combination of proven therapies known as Dara KRD.

• Daratumumab is an injection of monoclonal antibodies. It was approved in 2015 for multiple myeloma. It works by attaching to CD38 proteins on myeloma cells, preventing them from multiplying. This action directly kills the myeloma cells, or marks it for the immune system to kill. It is an injection to the stomach and the action looks like this: 

• Kyprolis is a protease inhibitor which prevents myeloma cells from multiplying. It stops cells from cleaning up proteins, which make them too full of proteins to multiply. It was approved in 2012 to treat multiple myeloma. It looks like this and is administered by a 30 minute infusion.

• Revlimid is a molecule which helps the immune system identify myeloma cells to kill. It also kills myeloma cells and prevents them from multiplying by starving them of blood. It was approved in 2006, and is a derivative of thalidomide (which caused birth defects when expectant mothers first took it for morning sickness). It looks like this and is ingested as a pill:

• Dexamethasone is a corticosteroid that reduces the immune system response to reduce pain. It prevents white blood cells from flooding to myeloma cancer sites, reducing swelling and inflammation. It also treats nausea from Revlimid. It was first used in 1958 for a variety of clinical applications. It looks like this and is ingested as a pill:

These therapies are approved in combination with each other to have constructive effects. The Dara KRD regimen is very new. Its effectiveness was first published in 2019 and the recent studies are very promising for newly diagnosed patients. Each drug has a long and unpleasant list of side effects. The side effects can vary widely among recipients. Given the treatment schedule, I have modeled out how I expect to feel over the next 8 months given the stackup of therapies:

There are incredible new therapies being developed now. In 2021, a CAR-T (cell replacement therapy) was approved. As I am only stage 1, I don’t qualify yet. This involves taking out T-cells from me, re-engineering them to kill myeloma cells, and re-inserting them into my body. Incredible. I expect this to become more accessible in my future.  

Recharging the Battery

The basic 126-cell submarine lead acid deep cycle battery is reliable and robust. It does, however, have some handing instructions. If you drain it too deeply (below 30%), it requires more time to charge back to full. It tends to lose voltage as it is discharged, then fall off a voltage cliff. It does not operate well near the low charge fritz. When you are completely out of juice, the screen is blank. No amount of willpower or spirit will bring it back to life. Only voltage and amps of current. So it is with personal energy stores during chemo. It might be easy to say, “take it easy and roll with it.” Running out of energy, staying in a drained state, and not being able to make good on commitments to yourself or others is not a healthy state of being. Being a victim of energy drain means hospital visits, delayed chemo, and a damaged spirit. Getting through chemo becomes an exercise in energy and expectation management. This is within my control. 

It starts with a good input model of energy drain, storage, and charge. What and how quickly will chemo drain the battery? What are minimum energy requirements for daily hygiene, eating, and communicating? What are the minimum energy commitments I need to make and give to those around me?

Then, we arrive at these operational rules:

• Understand your sawtooth energy band requirements and make them consistent.

• Operate at the highest charge band as possible. Avoid operating in the low charge band for prolonged periods. 

• Expend energy in disciplined, focused ways. Prioritize energy usage carefully.  

• Stop energy leaks.

• Know how to efficiently charge your battery. When you have a window to snorkel and charge, use it wisely to get into a higher charge band. 

Charge Bands, Energy and Expectation Management

Every moment, day, and week, I must be able to state how much battery charge I have. 0-25%, 25-50%, 50-75%, 75-100%. When you ask how I am doing, I’ll answer with a charge band, and you’ll know what I’m dealing with. Each of these charge bands has their own operating rules. 

My goal is to stay out of the red (0-25%) zone. I may dip into it from time to time, but when I do, I need to focus on getting out of it. Powering through and fighting this head on is not the answer. Being aware of trends and knowing when to conserve energy is the key. Not doing things is as important as doing things. Of course I have a list of activities for each band, with their energy draw and recharge value. Some things include renting a cello and starting to learn how to play it, to getting my instrument flight rating and current with flying so I can take the boys up.

I also need to allow my spine to heal, which means do not mechanically stress my newly fused vertebrae. Let the screws take hold, and bone to grow over the titanium instrumentation. Let the chemo and radiation reduce the myeloma-infested spongy bone, such that the screws will be firmly planted. When the time is right, do physical therapy to strengthen muscles to support and project the spine. This will require energy as well.  

The irony is not lost on me that a failed spine almost did me in. I have relied on my strong backbone (and sheer stubbornness) to get me into, through, and out of plenty of interesting situations. Now that it is a titanium-reinforced spine, I expect to stand tall for more things and people I believe in. 

Indomitable Spirit

This battery model assumes that a chemo patient is limited by energy and not will or spirit. In other words, I will always want to do more than I have energy for. In my case, this is a safe assumption even before this cancer diagnosis. My will to heal and live well is strong. There is much to live and be healthy for in the coming decades.    

When I was 17, I visited the Naval Academy for the first time for an introductory experience prior to applying. During that week, our detailers led us into Memorial Hall - a sacred place for midshipmen to ask themselves if they could live up to the highest principles and courage of the Naval Academy’s finest graduates. In a small alcove is an austere hand drawn portrait of James Bond Stockdale as a prisoner of war in North Vietnam’s Hanoi Hilton. Stockdale’s Medal of Honor Citation is worth reviewing:  

For conspicuous gallantry and intrepidity at the risk of his life above and beyond the call of duty while senior naval officer in the prisoner-of-war camps of North Vietnam. Recognized by his captors as the leader in the prisoners' of war resistance to interrogation and in their refusal to participate in propaganda exploitation, Rear Adm. Stockdale was singled out for interrogation and attendant torture after he was detected in a covert communications attempt. Sensing the start of another purge, and aware that his earlier efforts at self-disfiguration to dissuade his captors from exploiting him for propaganda purposes had resulted in cruel and agonizing punishment, Rear Adm. Stockdale resolved to make himself a symbol of resistance regardless of personal sacrifice. He deliberately inflicted a near-mortal wound to his person in order to convince his captors of his willingness to give up his life rather than capitulate. He was subsequently discovered and revived by the North Vietnamese who, convinced of his indomitable spirit, abated in their employment of excessive harassment and torture toward all the prisoners of war. By his heroic actions, at great peril to himself, he earned the everlasting gratitude of his fellow prisoners and of his country. Rear Adm. Stockdale's valiant leadership and extraordinary courage in a hostile environment sustain and enhance the finest traditions of the U.S. Naval Service. 

The Stockdale didn’t just survive 8 years of captivity. He found a way to fight back in a way that buoyed the fighting spirit of those around him. In 2002, Stockdale came to the Academy to speak. Almost 80, he had lost none of his vigor and indomitable spirit. Twenty years later, my classmate and friend Mike Smith and I wrote up a veteran code, inspired by Stockdale’s example. 

This is what an indomitable spirit looks like. 

As midshipmen we were fed a steady diet of these legendary stories of grit and heroism. In the 20 years since graduation, my classmates have etched their names into Memorial Hall with their own distinguished service. My plebe year roommate, Erik Boyce, was a Marine attack helicopter pilot and later died test flying a new helicopter. I am unsure what Erik would be doing today if he had the opportunity, but I do know he would excel at it with humility, as he had done everything else. Dan Cnossen, a Navy SEAL, lost his legs when he stepped on an IED during a patrol in Afghanistan. He later became a paralympic gold medalist in biathlon and is a motivational speaker. I had lunch with Dan last week. We talked about the nature of human grit and resilience, and Dan reminded me of the distinction between the pain you choose, and the pain that chooses you. Dan asserts that despite all that has happened to him, it was easier to bear because he chose the life of a Navy SEAL. Cancer, on the other hand, choses its hosts without consent. That said, we both draw strength from the paths that we chose in our twenties. Dan describes an excruciatingly difficult first day of Hell Week during BUD/S training. I sustained a spontaneous collapsed lung while at the Academy, and fought back from the brink of medical disqualification from service as a line officer within one semester. In both of those cases, conversations were had with ourselves, and permanent decisions were made about who we were. In short, chemo will not be the hardest thing I’ve had to endure. It will not be pleasant, but I’ve been through worse of my own choosing. 2022 will be a minor setback, but also a year of growth which will pay dividends for decades.

On this point, if you’ve googled the median survival time after first diagnosis of multiple myeloma, the interweb will tell you 62 months. If I believed that I only had about 5 years left to live, I would be writing a paper on my bucket list, and how to squeeze in 20 years of parenting into 5 years. A majority of multiple myeloma patients are diagnosed in their mid-60s. They have complicating health factors and may not be able to recover from surgery and endure oncology treatments as well as someone in their early 40s. The statistics are also based on people who have already been diagnosed and died who did not receive some of the newest therapies. The median age is just that- it doesn’t say anything about the data points on the right who live another 40 years. New therapies are coming out every 6 months due to the genomics and biotechnology revolution underway. The science points to a long life for me.

Having an indomitable spirit doesn’t mean that you don’t get frustrated, have meltdowns, or get demoralized. It means that despite those valleys and setbacks, you know that you will keep moving forward and reach your destination. We all have our own past achievements that we draw strength from. We have friends and people who inspire us. We keep these spirits close to us in times of hardship. When you ask how I’m feeling about all this, I really want to answer by telling you the story of Admiral Stockdale’s indomitable spirit, and the people I know who have carried that spirit in their own lives. As Stockdale had Epictetus and Marcus Aurelius to keep him company during his darkest days, I have many living examples to draw from.

I hope that this paper gives you a sense of how I am approaching 2022. It will be a good year. Plenty of people have endured and triumphed through far worse. Plenty more would gladly trade their own cancer diagnosis for mine. 

I wish for you to manage your own energy well and thrive to your fullest.