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.