The Cursed Cure of Steroids

 Another week has passed and I still have no stable diagnosis and hence no treatment plan or reliable prognosis either. On Tuesday I will meet again with MSK and by then they will have had all the data for eleven days and might be ready to make some proposals. Feeling fine in the meantime helps us to retain the necessary patience through this phase. Actually most of the time I feel better than fine, amped up for action (and then suddenly unable to keep my eyes open and requiring an immediate nap). We have established the reason for this weird state – it is the steroid medication I am taking.

 

I have some family history of steroids that I only start to understand now I am experiencing them myself. The last fifteen years of my mother’s life were cursed by steroids. In 1997 she had a medical episode that led to a diagnosis of temporal arteritis, something we never really understood and never really observed any symptoms from, though apparently it carries risks of blindness and other ailments. Mum was immediately placed on steroids to counter these risks, and she was never again able to escape from them, whether due to a form addiction or simple bodily requirement. Whenever (under family pressure) a doctor tried to reduce her dose, it led to sickness and behaviour change and within a week she was back at her regular level of prescription.

 

No doubt the steroids helped her to stay alive for as long as she did and to avoid the worst of her core illness, but the side effects were very serious. Her face and body swelled up like a grotesque red doll. Her bones became very brittle and her recovery from any incident became very slow. Her legs were constantly a deep purple colour from bruises that refused to heal. I don’t know, but the steroids may also have led to incontinence and other medical issues.

 

What we failed to understand at the time but is now starkly revealed is how the steroids must have affected her behaviour. Once dependent on them, her sleep pattern was never healthy, and she hated the curse of having to sit up for half the night with no chance of sleep. And in her later years her personality hardened and she found it hard to be trustful or generous in any relationships, which probably impacted how willing people were to be friends with her. It has taken my sister and I years to reconcile ourselves with our mum, and I believe a lot of that comes down to how tough she was to like during the steroid years. My concern is that during those twilight years this will have caused her much mental hardship and to struggle to love herself.

 

Now I am quickly observing precisely the same mental effects myself (thankfully not the physical ones, but they will no doubt come over time as well). It is extraordinary how just 3mg per day is having such a profound effect. The longest I can sleep at any stretch is three hours, and a typical night will have two bursts of deep sleep of two to three hours divided by an hour of reading. The 5am soccer world cup games have been a valuable distraction for me. By 6am I am wide awake and in full-blown production mode, but then I need two or even three deep naps during the day, before collapsing by 10pm and starting the cycle again.

 

More concerning are the personality impacts. My wife has spent ten years turning me into a more mellow and likeable person, teaching me the glorious benefits of service, kindness and generosity. My daughter visited from Dubai last week for a perfect trip, and she has observed my transformation as well. Together they were quick to spot the changes and motivated to alert the medical professionals to them.

 

I have reverted to my behaviour from a younger, more selfish and opinionated age. I have become needlessly quick to express an opinion or to offer feedback when silence would be a wiser course. The hyperactivity works against a peaceful household atmosphere. We are all obviously emotionally vulnerable just now, and this new me is far more likely to generate conflict among my most valuable relationships, the ones where we will have to rely on as this medical situation evolves. From the start of this ordeal, my greatest fear has been personality change threatening the legacy between me and my wife, and the warning signs are surely there now. Although we start the journey with a lot of love and goodwill to counter the threat, we need all the help we can get.

 

Urgently alerted by my wife and daughter at our first meeting with MSK last week, my quarterback gave full respect to their concerns. This is exactly the sort of area where we expect the well-resourced, patient-centric approach of MSK to pay dividends compared with the stressed individual clinicians of Long Island. My steroid dosage has already been halved and perhaps can be tapered further as we move into a new treatment phase.

 

We also must accept the benefits of the steroids. Their purpose is to reduce or prevent swelling of the tumour, and it is usually swelling that brings on the core symptoms and the risk of catastrophe. My core symptom remains as it was back in August, and perhaps that would not be the case without the steroids. We cannot afford to take unnecessary risks with the tumour. The quality time it is giving us every single day is worth accepting some trade-offs.

 

The hyper-activity is even a bonus in other ways. I am getting stuff done, including the unpleasant but necessary stuff like sorting out my complicated finances in Portugal. Even more fundamentally, feeling well must be the single most valuable contributing factor to staying well. If I start to feel sick, that can lead down a rapid slippery slope. Thanks to the steroids, that risk feels low just now.

 

While welcoming the benefits, I am thrilled that my wonderful family team was so quick to highlight the risks, and that my new medical team will take them seriously and perhaps find an appropriate middle path. I wonder how the last years of my mother’s life might have been different if she had enjoyed those opportunities. I wonder how many other people around the world are thrust into this cure that can so easily become a curse.

 

I wrote this blog in one sitting in forty minutes. That is my early-morning superman routine in action. It is how I am just now, for better or for worse, but the difference is certainly extreme. It is no wonder that sports stars and others are lured into the trap of taking steroids, for I can bear witness to the performance enhancing potential every single day. Heck, even my voice is much improved, with a strong core tome and breath control, a more flexible high register and greater awareness of the sound around me and how I can contribute to group intonation. I'll certainly happily take that.  

But while I can admire the new me and even make valuable use of it, I fear for its effect on my core relationships, and nothing at all is more valuable than those. There are aspects of the new me that I struggle to like, and that is sad after all the years of learning to be lovable. Still, we are still in the early phases and opportunities to find the right responses, and I can feel thankful to my family, on this Thanksgiving day in the USA, for being truly on my team when I really need it.

Symptom Bingo and other unhelpful models and analogies

 We are still stuck in the same loop waiting for a diagnosis that the oncologists trust enough to recommend treatment. This week we met at Memorial Sloane Kettering and we will probably rely on them from now on, and they have all the available material at this point so will pontificate once their pathologists have done their stuff. Meanwhile I still feel fine – actually eerily better than fine thanks to a steroid medication that is hyping me up – and somehow the longer we manage to go without any new symptoms or catastrophe, the quieter the ticking clock sounds in the back of my head and the easier it becomes to remain patient. It has been a blessing to have my daughter with us for the last week too.

 

Ever the strategist, I can’t resist finding models and analogies for the various aspects of the situation we face. The most morbid one concerned the brain biopsies; my mental model for those was Russian Roulette. No matter how the neurosurgeon tried to reassure us, those two procedures felt like taking mortal risks, and preparing for the first one was undoubtedly the toughest part of the ordeal so far. But, having survived one pull of the trigger, being asked to repeat the exercise was not easy either and I really hope that there won’t be a request for a third.

 

Now I seem to have been inserted into an episode of House. There have been many best guesses of a diagnosis shared with us over the last month, all containing various words that do not auger well, but the second biopsy led the experts to retreat a bit and to doubt some earlier assumptions. There is some unusual material in the sample and that has piqued their interest. Unfortunately follow up tests (including a gender-supporting mammogram this week) have not provided a breakthrough so far, so we now have rival teams of Hugh Laurie’s searching for answers. Like in all the best House episodes, I, the patient, am perfectly lucid and free, with my family, to contribute unhelpfully to the process. So far I have not provided the drama of an episode every time the show needed a commercial break. But there is the House background of the ticking clock for added tension.

 

The next analogy that came to mind concerned our transfer for leading our care to Memorial Sloane Kettering in Manhattan. The Long Island University Hospital is full of talented people doing their veruy best for their patients, but it was clear that their resources were stretched to the limit in many fields, and the result for the patients could be witnessed in compromised bedding solutions and in hurried communications. MSK is obviously abundantly resourced, and thrrefore hs the luxury of being able to supply a top quality patient-centred experience. On our first visit, the senior neuro-oncologist leading the team for my case described himself as my quarterback, and that was exactly what I wanted to hear.

 

The analogy that came to mind was an experience in a crowded airport departure lounge awaiting boarding for a packed long-distance flight, but being approached by an airline staff member and offered an upgrade to club class. On the rare occasions this has happened to me, I can recall a glorious sense of warmth flooding my body. The introduction to MSK felt very similar to that. Of course I have to remember that the passengers in club class are travelling in the same rickety plane with the same flawed pilot to the same destination the same distance away. But the cosmetics certainly matter.

 

My final image is the most common one, and that is of symptom bingo. I know the rules of this game very well, having undergone perhaps a hundred tests of my optics, motion skills and cognitive awareness over the last month. Many practitioners have used very similar tests to check me out. Most of them have read in advance that I have a peripheral vision issue so they start there and often seem bewildered that I can see anything at all, let alone get their questions right much more often than not. A few resort to making it more difficult by hiding their hands almost behind their backs so that only a four-eyed monster could ever tell them how many fingers they had raised.

 

Because the tests all focus on the same areas I have a sort of agenda for my own future. I suppose this is reassuring in a way, despite any clues about timelines or severity of handicap. What it does offer is a template for self-assessment. I play this bingo game with myself all the time.

 

The problem is that it is a hard game to play accurately. Worst of all are the phantom symptoms, brought about by fear and anxiety. As soon as I start to think about the numbers on my bingo card, I imagine I feel them. One of my clues towards self-awareness is when this starts to happen less; it signifies that I am closer to being at peace with myself. It is no surprise: in the end is these symptoms that will drive the agenda and the rate of my decline. It would be strange to imagine nothing in this situation.

 

The next problem are true symptoms from external and short-term causes. Last Saturday I noticed a rather strong burning sensation in both my hands focused at the lower end of all my fingers. I was immediately worried because that symptom is most definitely on my bingo card. Worse, unlike the optical issue, it was something I could easily imagine getting worse quickly and leading to a lot of pain and incapacity.

 

What I failed to note amidst my mounting panic was that on Saturday I had a PET scan. A heavily radio-active chemical was injected into my body, and then I was asked to lie still for an extended period. Surely that is quite likely to lead to the bingo symptom? Sure enough, by Monday the symptom had almost vanished again, though actively noting the absence of something can also be something I forget to do.

 

Then there is the challenge of judging how the true symptoms are developing over time. I try to monitor my peripheral vision issue each day. Some days it seems much worse and other days it seems a little better. But then I realise that on the days when it seems worse there is usually an external cause such as a very dull day or a heavy glare or trying to read something with small print in bad light. My conclusion so far is that the symptom has neither become better nor worse for a full three-month period. That is rather reassuring.

 

This week my quarterback reminded me of an extra bingo rule that I often forget about. Because the tumour is on the right side, I should expect most symptoms to arise more strongly on the left side of my body, as indeed has been the case with my peripheral vision. So far all the burning and other symptoms have seemed equally prevalent on both sides, and that is comforting evidence that they really are phantoms of unrelated to the core illness. If you play a bingo game or any other game, it is smart to remember all the rules.

Not even MSK can afford to give me an MRI every week so my own bingo card monitoring is surely an important indicator of my health and of the behaviour of the tumour, and it is something I have to carry on with as rigorously as I can and report honestly to my doctors. But it is not easy to do that. The many external tests give me an agenda but the quality of their execution I often lacking. I know I cannot trust many of my own assessments, due to the phantom symptoms from anxiety and then the true but temporary symptoms caused by external factors. I have to move past this towards a bingo card that I can trust and report. I guess it is something to pass the time, and certainly more fun than Russian Roulette.     

Succession and Legacy

 This blog may take on a new character from now on, because I am entering a new phase in my life. I may not follow the same discipline about frequency or length of post, but the purpose otherwise remains the same.

 

The new phase started last Friday when my health journey led to a clear diagnosis of a high grade malignant brain tumour, something that can be held at bay for an uncertain time but not cured.

 

The two night stay in hospital for the repeat biopsy was not comfortable. This time I did not make it to a ward at all owing to a shortage of available beds. Before my procedure, I was parked in various parts of the emergency area, in a crowded service corridor followed by a holding area where space, privacy and peace were minimal. I lucked out after the procedure though, because they left me in post-op overnight, and I discovered that this is the only part of the hospital that does not come alive at 5am, because their patients only start to arrive after 9am. Instead, once others had been cleared away, I had two nurses more or less to myself and would have been able to sleep had I not been pumped up on steroids. My book was a saviour that night.

 

Then it was no surprise that they packed me off home with indecent haste; we were pleased to exit before 10am, just 16 hours after waking from general anaesthetic and three hours after the devasting news was delivered, thankfully professionally and with due empathy. But it was maybe inevitable that later in the afternoon, with anaesthetic wearing off, medication not fully effective and the stress of many phone calls to close family, I suffered a crisis of phantom symptoms that made me think I would soon be back in ER. Luckily it passed, and now I am fully recovered once again.

 

Crisis can create miracles, and I am astonished at how much emotional progress my wife and I have been able to make over these recent days. It may have been the saddest week of my life, but in other ways it has been one of the most joyous. We are truly surrounded by love. Facebook has its uses, even if my Meta shares are rapidly becoming worthless (at this point, who the hexck cares?), and I have derived joy from renewed contact from many old friends, all showing great kindness. Strangely, the ones that are driving me to tears tend to be former work colleagues. A bi-product is a torrent of compliments that cannot be good for my inflated ego (once again, who cares?).

 

I now find many of my thoughts and intentions to revolve around legacy and succession, and I have a series of projects in these areas I find a weird drive to complete. Fortunately, these will play to my strengths.

 

I love the TV series Succession. The patriarch is so broken and unconfident that he survives only through sadism, usually exercised against his own children, who he breaks in turn while bequeathing all of his worst qualities. The show is somehow funny while also being as dark as could be imagined, and there not the slightest hint of a Hollywood redemption ending. Excellent.

 

Somehow I seem to have been able to find a diametrically opposite path in many areas of my life. Parenthood is all about giving our children the tools to fly solo and then getting out of the way, and the rewards are the greatest pleasures I know. At work, at one point I managed a team and stumbled into a model by which the primary purpose became to ignite talented careers. Somehow I got away with this for years, and we became very good at it and the reputation ballooned as we went. Many of the team have gone onto truly great things, and the pleasure I can derive from that is almost as great as that of a parent.

 

If I could offer one piece of advice to most bosses, it would be to get out of the way. Let subordinates develop relationships with your own boss, and let your team manage its own affairs. Set goals but give freedom of method, without constant reporting back to you. It works. And your own life becomes simpler too. But unless you are confident and competent it is hard to find the courage to work this way.

 

Now I have a series of projects to execute, ranging from some valedictory thoughts to simplifying finances and, most important, trying to help my wife to make good decisions to shape the altered life that she must face. In a way, the timing is lucky, because we were already in a process of planning our transition from the USA back to Europe. Last week I handed over my president responsibilities for our local community choir. It is a relief to have achieved that and to see the choir in such a strong position to thrive. Getting out of the way yields rewards.

 

These projects share a unique feature, their variable timeline. I have no idea how long I have, so everything is urgent. Every project must reach an optimal closure point every day, recognising that circumstances may necessitate immediate closure at any time. If that point comes quickly, a shaping study and Myers Briggs readout and a check in process are not much use, but the disciplines behind these tools can still help. It is a strange contradiction.

 

I have been thinking about any parallels from my experience, and the nearest I can come up with is as the last CEO of Norske Fina, after Shell had bought the business and before its final integration into the mother ship. My goal (succession again), was to get out the way as soon as possible, and external actors had incentives to accelerate that timeline to a faster pace than I was comfortable with, so I had to be ready for closure all the time. But we also had useful projects to execute and a business to run. I remember clearly our first Monday morning operations meeting after the merger, trying to refocus a dispirited and distracted management team onto day to day matters like pricing and signing customer deals and bad debts. It was interesting and fun and we made something of a success of it – I had always wanted to be a proper CEO and wasn’t going to waste my fleeting chance.

 

It is quite  good discipline to have the attitude of a best possible closure every single day. This does not mean skipping important steps – a poorly framed project will always fail. Critical items that take time cannot be shirked, even if the consequence may be a small chance that the project does not close at all. So there have to be clear priorities, with focus on those projects where that incomplete outcome would have the most negative consequences.

 

Most useful, the mindset of daily closure works against procrastination. By forcing a strong daily closure, and then iterating to a better closure on each subsequent day, there is a useful bias towards action and decision, with the comforting backstop that in an iterative world every decision can be changed the next day. A good example of a procrastination tendency is where there is need to resolve something with a life partner. It is wrong to rush in without thought, but almost as bad to put the discussion off until a perfect moment which never arrives. A mindset of best available daily closure is very helpful here, as I can testify based on the things that my wife and I have managed to resolve over the last few days, yet another source of joy.

 

I cannot really recall how this priority of getting out of the way first came to me, but I am grateful that it did and to anybody who helped me along that path. Facing the ultimate task of getting out of the way, I cannot imagine a more valuable life skill at this point. But the TV show would be much less fun than Succession.