This blog covers what I’m doing daily through this first month of chemotherapy and why.
Events raced in my blood cancer. I was diagnosed and admitted to the hospital on a Wednesday, put through various scans Thursday and Friday, started with steroid therapy on Friday, and started with chemotherapy on the Friday of the following week. My current chemotherapy lasts one month and puts four cocktails of drugs in my body at different times during the month. I got a list of medicines in these cocktails and scanned the side effects of these drugs on the internet.
It was a shock. The total breadth of side effects is massive. It covers short-term side effects (felt during the therapy) to long-term side effects (encountered years and decades beyond). Short-term effects range from nausea, vomiting, drying skin and skin problems, loss or alteration of taste, loss of head hair, blood during urination, diarrhea, susceptibility to infections, etc. For all of these effects, the doctors have defenses — other drugs they could give, if the side effects were felt, to stabilize me. The doctors can’t predict which patient would develop what short-term impact. So, I quickly stopped thinking or worrying about these effects. They are beyond my locus of control, and the experts can handle them.
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Then comes the long-term side effects. My hospital roommate is suffering long-term side effects from his treatment in another blood cancer. He has difficulty with German word lookups and searches for a word for a concept he knows. He finds it difficult to correctly pay attention to the material information while ignoring the noise and focus for more than 1 hour on any task. He feels pain in moving muscles of his ankle in specific directions and issues maintaining muscle mass. Every chemotherapy patient has such a distinctive mix of long-term problems.
The doctors disclose such long-term side effects for my particular therapy via an official paper. They include everything from the whimsical to the tolerable to the materially impactful to the grave. A whimsical effect is that some chemo patients lose all of their head hair, and it grows back later much curlier than earlier. So, a curly-headed Meher is in the offing :). A tolerable effect is the permanent loss of fertility. The doctors bought me insurance against that by storing my sperm samples before initiating chemo. I would class my roommate’s attention and lookup issues as material. There is a colloquial term called “chemobrain” that is a superset of similar brain issues. Grave issues of my cocktail are future increased risk of other unrelated cancers, increased risk of diabetes, weak bones, and the body finding it hard to seal cuts. All these side effects are happening because our current chemotherapy technology is not targeted enough. It kills the cancer cells, but it also kills other healthy cells performing perfectly well. Imagine a city with a few criminals loose. The mayor brought in the army to destroy the criminals. The army killed the criminals and indiscriminately blew up the science museum, damaged the water treatment facility, and took down a few schools. That’s state of the art in chemotherapy today.
How do I respond? How does any prospective chemotherapy patient respond? This article is my answer, and from it flows a plan for my (every) day at the hospital.
Dreams of Churchill
I dreamt I was old, wizened, battle-scarred, obstinate, determined Winston Churchill on the eve of the Battle of Britain. Once Hitler had consolidated his hold over Europe in 1940, Germany set its eyes to bombing and subsequently invading Britain. I saw myself in Churchill’s shoes scanning over a massive hologram of Britain — people, factories, weapons, the palace, and hamlets. I saw it all, and I realized I will need to choose who and what to try to save. I woke up feverish from the insight and knew how to think.
Churchill was faced with an unpredictable enemy strategy. He could not have known where Hitler would bomb and invade… Churchill also knew that no matter his efforts, the future contained a changed Britain with the loss of many people — destruction itself was outside his control. He did have something in control — prioritization of what to save during the Battle of Britain… I believe I also have that same element of control — prioritization of what to preserve from the ravages of chemotherapy.
Churchill was faced with an unpredictable enemy strategy. He could not have known where Hitler would bomb and invade. The indiscriminate chemo is similar — I cannot tell what healthy part of me will affect, save the definitely known side effects like hair loss. Churchill also knew that no matter his efforts, the future contained a changed Britain with the loss of many people — destruction itself was outside his control. He did have something in control — prioritization of what to save during the Battle of Britain. There are examples where Britain chose to let the German war effort destroy elements even though they had intelligence of upcoming attacks to prioritize the more critical features. I believe I also have that same element of control — prioritization of what to preserve from the ravages of chemotherapy.
You see, we all can make a catalog of all the capabilities we individually possess. On the dimension of the body, we can inspect the body muscle by muscle and joint by joint and articulate the range of motions these elements can do. In the dimension of the mind, mental capabilities can be broken down into classes — short term memory retention, long term memory retention, attention targeting (paying attention to the correct piece of information and ignoring the rest), word lookups, language construction, visual shape manipulation, facial recognition, arithmetic calculations, etc. A catalog is easy to make.
With this catalog, the next problem comes into view: How to prioritize what to save? This is where each chemotherapy patient will diverge in their preferences — they must decide what matters to them. For me, the answer is breadth-first prioritization — I want to save some capability in every element of the catalog, even if I lose the peak performance in that capability. Some examples clarify.
I am good at mental math and can add or multiply relatively large numbers in my head. I am OK to lose much of this ability as long as I retain the essential knowledge to add small numbers. I am great at high-intensity running at a heart rate of 190, and it’s acceptable to lose that ability as long I can simply run. I am poor at word lookup (scrabble is difficult). Therefore it is highly critical that I retain whatever capability I do have in word lookups. My thigh muscle is stiff and doesn’t articulate well, so I must preserve what I have there. On the high level, I want to walk away with at least small or medium levels of ability across all catalog elements, even if that means sacrificing what differentiates me as an individual. After chemotherapy, I will again train and develop some parts of the catalog to a high level of performance. Make sense?
That leads us to the final problem: How do we tell our body what to preserve. What’s the preservation signal? It’s blindingly obvious.
Our intelligent bodies operate on a use-it-or-lose-it basis… The use of any capacity in our body is not just a physical or mental work — it doubles down as a signal for the future development priorities of the body… If true, I, the Winston Churchill of my body, can signal my preservation priorities simply by using capabilities in the catalog during my entire month of chemotherapy on a breadth-first basis.
Our intelligent bodies operate on a use-it-or-lose-it basis. Whatever part of the catalog of abilities is used to its limit develops further. Powers seldom used shrivel to free up space for other things. The use of any capacity in our body is not just a physical or mental work — it doubles down as a signal for the future development priorities of the body. I suspect the body uses sleep to aggregate these signals and build structures according to the development priorities laid down by actions in the day.
If true, I, the Winston Churchill of my body, can signal my preservation priorities simply by using capabilities in the catalog during my entire month of chemotherapy on a breadth-first basis. That’s the protocol my wife, Apoorv Tiwari, and I have minimally designed and are iterating on further. The two prominent execution elements are Sukshma-Yoga and Lumosity.
Sukshma-Yoga or Subtle Yoga
This is an ancient practice of Indian yoga that my wife has learned and is further specializing in for me. Yoga is associated with complicated postures, hot temperatures, and balance exercises. Sukshma Yoga is very different from the commonly held conception of Yoga in the West.
In Sukshma Yoga, there are no complicated postures or even a need to get out of bed. Instead, a session goes through joint by joint and muscle by muscle making subtle, slow movements across the entire articulated range of the body part. Slight movements are accompanied by different types of breathing — single nostril breathing, dual nostril breathing, throat muscle-based breathing, and stomach-based breathing. Glands are exercised via massages. A 1-hour session of Sukshma Yoga is feather-light on energy requirements since all of the movements are subtle. The low energy need is an exquisite property to have in chemotherapy. I, or any other patient, won’t be at their peak energy during chemotherapy.
Sukshma Yoga is my method of sending a breadth-first preservation priority signal to my body.
Lumosity
Apoorv researched the catalog of brain abilities and searched for solutions to the prioritization signaling problem. He settled on Lumosity, an application containing around 50 simple mental games. These games exercise different aspects of brain function such as information lookups, short-term memory storage, flexibility, arithmetic, shape manipulation, logical problem solving, and speed. I play different games on Lumosity every day and make sure to spend 10–15 minutes on each part of the catalog. I don’t try to do well on any of the games or look at the scores of other people on the same games. This is not a competition or training; it is a preservation signal!
Dissatisfaction
I was proud of this 2-day hacked-together protocol until a significant doubt crept into my mind. When I scan my entire life and all of the successes I have been blessed with, I associate them significantly with an ability to plan and strategize for the long term. In my post-cancer life, my ability to address future cancer is a problem where long-term strategizing and planning are a material determinant of success. There is nothing to practice long-term strategizing of the kind needed in the real world in Lumosity. I thought of the natural variant: strategy games like Age of Empires. I downloaded the latest and greatest on the iPad and was busy learning the rules.
And then, another flash of inspiration struck! The best preservation signal for long-term strategizing ability is not some software game but a blog. The blog would cover my recovery plan from blood cancer in the short and long term. It will force me to think strategically every day. As a side effect, send a preservation signal for my strategic mind. That digital manifestation of the tool is this chemo-diary you’re reading.
In effect, I am breaking my earlier rule of breadth-first preservation to make one depth-first exception: long-term strategic ability. This is the only ability in the catalog I will exercise intensely every day.
Design of my day
I wake up at 07:00, groom myself and give my blood measurements until 08:00. The following 1–2 hours are engrossed in Lumosity. After that, follow some doctor appointments and then 1 hour of Sukshma Yoga. Then, I break for lunch. Post lunch, I work on the blog as much as my energy permits. I have video calls with family, friends and walk in the park during breaks in blog writing.
One final thing: I interact socially with everyone who comes into the hospital room: nurses, janitors, caterers, doctors, etc. I remember their names and get to know their stories. It improves the vibe on my floor, and it doubles down as a social intelligence preservation signal.
What do you think? Send me feedback, questions, likes, comments. Don’t shy away thinking a cancer patient needs his rest. On the contrary, I am Winston Churchill, and I am fighting a war for preservation.
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