What's it all about, Alfie?

 (In honour of recently deceased iconic songwriter of the 1960’s, Burt Bacharach. Burt will be resting in peace and some awe, certainly if any celestial composer’s hall of fame be listed somewhere in alphabetical order)

 

Last week I fired my shrink, or at least agreed a pause in our sessions. Do not draw the wrong conclusions. I like my shrink very much and feel that if anybody can offer me value in that role, she can. I was encouraged to seek mental health counselling by my family when first diagnosed, and I quickly overcame my generational and national cynicism towards that profession (which immigrant New Yorker could grow up watching Woody Allen movies and not be cynical about shrinks?) and signed up, once it was confirmed that my insurance would cover it.

 

The reason that we declared a pause was very positive. She had given me the reassurance I needed at this time, so additional sessions felt like they would only offer marginal value. She has a waiting list as long as your arm, so freeing up space for others seemed only fair, so long as it was agreed that I could jump the line again if my circumstances changed.

 

After the first couple of sessions, our time together had tended to follow a pattern. The shrink would try to explore my state of mind, and concluded that I had been doing the same thing and reached defensible conclusions. She might try a technique or a device like a questionnaire or model, only for me to be more interested in critiquing the model than being a subject of it. And she would finish the session with howls of laughter, declaring that she probably needed a shrink more than I did.

 

One probe that she used a few times tested how anxious I might be about my legacy, and  questions concerning the meaning of life. What’s it all about, Graham? My stock reply to this probe, after a bit of thought, was to profess that I wasn’t sure that life needed to have much of a deep meaning, and that even if it did, I was not overly concerned by the question. Am I not just a humble creature trying to do his best for himself and those close to him, someone whose demise would probably not change the course of history a great deal?

 

In our last session, my shrink tried a slightly different tack, unveiling a model where I had to select from a long list of values, and then progressively narrow my selection down to only five. The surviving values did not need to represent the meaning of life as far as I was concerned, but probably gave a good clue to what affected my mood. On a bad day, one or more of my core values will probably have been violated in some way.

 

I raced through the exercise, and came up with Integrity, Creativity, Service, Education and Health. The shrink pointed out that all her patients tended to choose health, and I readily agreed that a year ago I would probably not have made that particular selection, health being something we typically assume will be all right on its own, until it isn’t. For me education was the nearest available proxy for lifelong learning and growth. Along with that one, integrity and creativity are values I would probably have chosen ever since becoming an adult, while the choice service owes a lot to the influence of my wife and the fulfillment we have discovered together from volunteering at the old folks’ home.

 

Now I look again at my list, and by cheating a bit, we can use the exercise to come close to answering the question that Burt wrote for Cilla to ask. Health is a prerequisite – without that, not much will be accomplished. Integrity represents a personal set of fair rules, and could encompass honesty, fairness, justice, equity and other values. Education and creativity are my selections for how best to go about activities, but I could also have chosen curiosity, growth, teamwork or even competence – we are at our most effective when we utilise our strengths and work collaboratively. Service is the closest of my five to a purpose. When selecting service I rejected alternatives of three types. One group included family and nation, a second one faith and religion, and a third included pleasure and happiness.

 

Happiness was tempting, for what is the point of choosing to be unhappy? But it can also be rather hedonistic, for our own happiness should not exclude that of others.

The religious ones had the same problem for me, in potentially being exclusive. I struggle with any group that likes to think of itself as chosen by God what gives us the right to consider ourselves so special compared with others, or even other creatures? I do find the teachings of Jesus to be quite a good guide for my behaviour, but there are other good guides available and I wouldn’t want to proclaim my own to be superior. And, while I use prayer, I certainly can’t believe that any God would be selective in who to love or to save, or waits to sit in judgement.

The group including family and nation also felt too exclusive to me. I believe that we should be careful not to identify ourselves uniquely with any team or tribe. Inevitably the service cannot be totally inclusive, since my life will bring me closer to some than to others, and that focus will maximise opportunity. And life partners, really close friends, and family must be where the focus starts.

 

The exercise of my shrink can can offer a sort of answer for Alfie. While healthy, I should act with integrity (according to my definition) to use growth and creativity (and a few other things) towards the purpose of finding happiness through service. I find this summary helpful. The exercise is surely available online if anybody else feels the urge to complete it.

 

But we can take an even more literal and biological approach to defining our purpose. All creatures on earth seek to stay alive and healthy long enough to procreate, hence prolonging and evolving our species. If we include that dimension, it is obvious how our children and their other parents must lie at the core of our purpose. That insight leads me to another, even simpler answer for Alfie, and it uses another baseball metaphor. Some hitters are all about themselves and aim to hit every pitch out of the park. I prefer hitters who will hit a home run if the right pitch comes along but whose main priority is to get on base one way or another, even via a walk or a bunt. These players describe that approach as keeping the line moving. If most hitters reach base, the team will score a lot of runs every inning as the line keeps moving along.

 

I hope I have kept the line moving, whether or not I have hit many home runs. I like the comparison with ants, creatures I find admirable, where everyone knows their role and works as a team towards a common purpose.

 

A final dimension of this musing concerns the end of life, and the need to get out of the way having set up the rest of the line to thrive without us. It gives me great satisfaction that my partner and all my kids, and even many within my wider orbit, are so well placed to thrive. That gives a sense of completeness, and offers a whole bundle of happiness.          

 

Thank you Amanda for prompting these musings and for all the reassurance over the last few months. You provided exactly what I needed, and perhaps can do so again later in this process. And thank you too and rest in peace, Burt, perched next to Johann Sebastian. I hope Alfie had his own Amanda to find his own answer to your question.

Lags and Delays

 It is now ten days since the end of my intensive treatment phase. One thing it has taken me time to become accustomed to is how different effects and symptoms arrive at different and unexpected times. This factor makes it harder to assess, and to plan, and it must also make the job of the doctors much tougher as well.

 

I was given warning that this would happen but chose not to listen fully. The intensive treatment of both the radiation and the oral chemotherapy lasted six weeks in total. We might think that changes would start to occur soon after treatment began and for conditions to revert to their prior state soon after treatment ended. The reality has been very different.

 

Nausea is just one of many examples. My nausea did start as soon as I began my course of oral chemotherapy. It came more strongly on some days than on others. It was usually at its worst during the afternoon. I learned that the best way to reduce nausea was to eat, even though the nausea itself led me to have no desire for most food. I suspected that some of the other medication made the nausea worse, and that the radiation treatment might also create some nausea. But it was not at all consistent, and my theories might be rubbish.

 

The nausea having started soon after treatment began, I naively expected it to go away again quickly after treatment concluded. But it did not. Today is the first day I have experienced no nausea at all, and even that does not give me a guarantee for tomorrow or the day after. I am fairly sure that the oral chemo is the main culprit, and it must have started coursing through my system as soon as I started taking the pills. But the continuing nausea means that the chemicals were still affecting me long after I stopped taking pills. Next time I should make fewer assumptions and be more ready to challenge my own theories.

 

For steroids something similar happens. In this case, it takes only a day or two for me to notice any effects after starting on a course. But the time lag between stopping the course and my body returning to normal is much longer. This time my dosage was quite low, but it still took over a week for my sleep pattern to return to anything resembling normal after I stopped the pills.

 

When it comes to my peripheral vision, I again find inconsistency and unpredictability. The basic influences are clear, but how they work in parallel or with which time lags is far less clear. For sure the operation before Christmas led to a major additional loss of peripheral vision, and the swelling that the operation undoubtedly caused will have probably made things still worse before starting a recovery. Then the radiation will have caused more swelling and deferred any recovery further. But the short burst of steroids should have acted to reduce the swelling, and the end of treatment should have naturally started swelling to diminish as well. Indeed, I have observed all these effects, but not in a straight line or with any consistency. I believe my peripheral vision now is better than it has been since before the operation, but not every day.   

 

A final example is different. Towards the back end of the treatments, I started noticing changes to my skin. Some long-term lesions vanished completely while others seemed much looser, as if I could even scratch them off if I tried. Other lesions appeared that I had never noticed before. Then, a few days after the treatments ended, I started to experience a mild burning sensation across much of my body, mainly in the evenings and at night. The burning sensation came with a strong urge to scratch, which still persists, though perhaps it is moderating a little bit and certainly I am becoming more adept at resisting the urge.

 

I reported this new symptom and now the doctors must try to work out what is happening. Luckily my team is very responsive, and I have a dermatologist appointment set up for Monday. I guess the most likely cause to be more delayed effects of the oral chemotherapy. I hope this theory turns out to be correct, because the alternative is that this new symptom is a development within the cancer itself. Hopefully we can learn more next week, though the symptom itself may have changed by then, and the dermatologist will surely have to run some tests, and even those may be inconclusive.

 

These different timings of onset of symptoms, combined with unreliable tests and even more unreliable self-assessment by patients, must make the job of the doctors much harder. And I am one of the lucky few. For many illnesses for people with weaker insurance and access to fewer medical professionals, it can take weeks just to secure an appointment with a relevant specialist. The timeline for many people involves a lot of waiting, interspersed with repeated frustrating findings which may rule some diseases out but fail to provide a diagnosis of any certainty and one that can be effectively treated.

 

It must be tempting for both doctors and patients to try to predict what may be coming and when. I confess that I tried to influence my doctor to time the most recent course of steroids, predicting that the energy burst (and improved singing voice) would come just when I needed it. I was lucky this time in that the tactic seemed to work, but there simply too many variables and too much at stake to make it a good strategy.

 

There are parallels in other aspects of life. A classic one, very much in the news, concerns how central banks set interest rates. They have a mandate to try to control inflation and employment within desired bands and interest rates are their primary weapon. But it is hard to time the policy because the effects of interest rate changes usually lag by several months. They have to try to treat tomorrow’s symptoms but only with today’s data, filled with unpredictability and influenced by several external variables. It is no wonder that mistakes are made.

 

This is one reason why artificial intelligence may soon make substantial contributions to medicine. My doctors are trying to choose the most suitable treatments and medications to treat my cancer, knowing that every patient is different and that the data they can use is subject to poor measurement and variable time lags. Having a database available of how tens of thousands of other cases played out is potentially very useful in this situation.

 

With the current frontiers of medical science, I am certainly lucky. Somehow I managed to spot my visual symptom early enough for treatment to be able to start before the cancer had already won the war. As a result, I am surely healthier than many patients and able to contribute useful measurement data. Thanks to the hard work of my wife, the insurance available through her job and our location in the global capital of cancer research, I have access to the best expertise.

 

But the confusing time lags are just one of many factors to draw a conclusion that even a lucky patient such as me must accept lots of uncertainty and an incomplete toolkit. This science is progressing at a rapid pace and the guesses made by doctors twenty years from now will surely benefit from improved data and tools. Perhaps I can benefit from some of this myself. At least I can offer one unique data point among thousands to assist in the process. God bless science and humanity.     

Graduation. Now what?

 I reached a milestone this week. The most intense phase of cancer treatment concluded after six long weeks of radiation and oral chemotherapy. I came through it largely unscathed, and it is a wonderful relief to not have to commute for treatment every morning and to feel the nausea sliding away and my appreciation of food return.

 

I find it hard to define distinct phases for this cancer journey, but one characterisation might set the first phase from August to December and all about discovery and diagnosis, and a second phase ending this week all about intense treatment. The third phase, starting now, envisages more of a maintenance level of treatment, with a higher dose of oral chemotherapy but only for five days per month. We can almost describe this as waiting and monitoring and hoping. Still, this is something to celebrate. One person very close to me confided that they feared we would not reach this point, and for sure others had the same thought in their head.

 

In some ways this is a strange form of success. For most projects we define clear, observable, measurable goals and can produce a dashboard to summarise performance. What would that look like for the phase just completed? I believe it would have just two items. Firstly, survive, endure, and maintain functional activity. And secondly, run up a series of zeroes onto the scorecard. The list of zeroes is long and thankfully unblemished. No new or worsening neurological symptoms. No infections, no fevers, and no seizures (apart from those under general anaesthetic). No severe or persistent headaches. No issues with blood where it shouldn’t be or insufficient blood where it should be. No slips or falls or serious loss of balance. No cognitive or motion issues, or scar or scalp damage.

 

I almost feel like Max Scherzer, playing a baseball game where my team has no offence but plays defence every inning. I must pitch a shutout, through the whole game and into extra innings, realising that any scrambled run for the opposition signifies defeat. At least I have the best available defenders and pitching coaches and they have plenty of weapons to stymie the offence of the opposition. At this point the opponents are batting with a bunch of clueless rookies, but we all know that any kid can walk into a perfect swing and that rookies learn and improve.

 

It feels great to see all those zeroes on my imagined Citi Field scoreboard (and perhaps soon I can celebrate seeing some for real once the season starts next month). But, without being in the least bit ungrateful, there is something missing in this game. Where is the offence? We love to see great pitchers, but the real glamour in the game comes from home runs. Everyone can remember that last year Aaron Judge scored a record number of homers, but only the diehards can quote the stats of the Cy Young (pitching) award winners. I am playing in a game where only the opposition can score homers. I can accept that.

 

Another issue crops up now as the intense treatment phase concludes, that that is about our planning horizon. When playing to survive, endure and function, that is the only meaningful horizon. Every plan pointed to reaching the (negative) goals achieved this week. But successful projects have simultaneous goals for multiple time horizons. In business I have generally advocated for three horizons. The shortest looks forward only a couple of weeks and is all about immediate execution. The second horizon plans towards the next project milestone. And the third horizon looks, with less specificity, for progress towards the ultimate successful completion of the project.

 

In my project the intense treatment phase only really included the shortest horizon, and goals of zeroes (and no actions) in the second horizon. That was necessary. But what now? Can we dare to reintroduce a third horizon?

 

Things can go very wrong at any time, but I understand that at this point I have a reasonable shot at a period of several months or even longer of relatively good health. The zeroes are being posted, the great tools to stymie the opposition batters have been applied with apparent success, and even the maintenance tools are pretty good. My tumour chose to be rather docile while it was free to run riot during the diagnostic phase.

 

Yet there is something scary and difficult about reintroducing a longer horizon. Would such thoughts jinx it? Might it result in loss of focus and offer a hanging slider for some opposition rookie to knock out of the ballpark? Or is it a smart thing to do? Projects often fail because they forget the third horizon. What is the point of goals that only survive and endure anyway, leading only to yet more survival and endurance? I don’t have a long bucket list, but at the same time I have no wish to suffer progressive disability and to impose that burden on my loved ones.

 

I am discovering that it is easier to narrow a time focus than to widen it. Smart as ever, my wife has started asking me third horizon questions, usually at six o’clock in the morning. Should we think about moving back to Europe after all? Can she rethink her career goals once again? I cannot yet offer any answers. I am out of practice. There are many new considerations to factor in. I must stay realistic. My team has no offence, and my primary task remains to help prepare my loved ones for the time when the opposition score that home run. All timeframes remain highly uncertain. And I am frightened.

 

So, all being well medically, the coming weeks will involve some new thoughts and new discussions. We would be remiss not to consider the opportunities that those zeroes might be providing us. Perhaps there is a worthy or fascinating project out there that I have never considered. I have not really got into deep thoughts about the meaning of life, but this is the sort of situation where they might emerge.

 

In the meantime, we must remember what has helped us to reach this milestone in a healthy emotional state. However we eventually address the third horizon, we should do it as a unified team, recognising that the fundamental reality is unchanged and that we are on parallel journeys to different destinations. And we have more reason than ever to be thankful.