Recovering from Recovery

 Last Monday I had brain surgery number five. It was a relatively small procedure as brain surgeries go, and I must have recovered quite well because I was singing by Thursday. Now I have another scar on the other side of my head to match the ones from previous procedures.

 

While the surgery and recovery went well, one purpose was diagnostic, and those outcomes are not so good. After a full year where treatment seemed to keep the cancer in check, it is now clearly proliferating within my brain (though thankfully not anywhere else so far). Because I have so few symptoms and feel so well, the oncologists can now try different treatments, which will include more radiation therapy, different chemotherapy and perhaps some immunotherapy, whatever those things all are. If I am lucky these can give me a further period of good health, but from here we have to also accept that health is more vulnerable, and symptoms could appear, progressively or suddenly.

 

We are so grateful for all the support we continue to receive, from medical professionals, friends and family. In tough weeks like the one we have just been through, that makes all the difference.

 

The procedures all seem to follow the same emotional pattern, and I make the same wrong assumptions every single time. The tendency is to focus on the procedure itself whereas the tough part is actually what follows afterwards.

 

I remember well the frenzy of activity I went into in the days before my first surgery. Once I went under general anaesthetic, would I ever come out again? What do I need to tell my wife and family, just in case? What if I do survive, but as a vegetable or with severe disability?

 

I have been around the same loops with each subsequent procedure, but with a little more realism and a little less frenzy. I don’t sleep the night before surgery, but I find it helpful to distract myself and to travel to the hospital by public transport, fooling myself that this is just an ordinary day.

 

Of course all of these worries are logically rather silly. Yes, procedures carry material risks, but I am probably far more likely to die crossing the road each day than I am on the operating table. It is rather like the feeling we all have waiting for a plane to take off. We are probably doomed to suffer the anxiety, but at least we can remind ourselves of some relevant statistics.

 

The same mood prevails into the operating theatre itself, though of course the odds of real physical suffering during an operation under general anaesthetic are even more miniscule. It can go catastrophically wrong, but I would know nothing about it, at least until I might revive from coma or whatever other consequence arose. Once again, there is little logical point in all this focus and worry, but probably no escape from it either.

 

So anxious do I become about the operation itself, I always forget that the tough time is usually afterwards. There are many recurring features, and I am never well-prepared.

 

First of all, I wake up, heavily dosed with anaesthesia and disorientated. The medical staff are discussing their findings, openly, not knowing I am awake. I hear things I would rather not, and then spend hours wondering whether I heard them correctly or even dreamt them.

 

Then I find myself in another room with the welcome presence of my wife. She and the nurses scramble to find some juice or tea, realising that I have consumed nothing for over 24 hours. The anaesthesia starts to wear off and the pain might build. With an open wound in my head, there is no way to lie and be even remotely comfortable. I start to understand that this will be my fate for the whole night.

 

This time I was lucky to have a quiet, spacious room on my own and with an attentive nurse almost to myself. I can start to give thanks that I am still alive and functioning and that nothing major seems to have gone wrong. But the night is long, with no sleep to speak of, and low levels of pain building up through the night. Smartly, I persuade the nurse to allow me to sit in a seat rather than try to lie in the bed. That helps but makes sleep even less likely. Even if I can doze a little, the nurse has to wake me hourly to check my functions. It is all a bit like an eight hour night flight in an undersized middle seat.

 

Then there is the inevitable visit at 6am from the interns in the surgery team. They try to pass on news, generally bad news, but their skills at this are not great and in any case I am struggling to focus, and only later remember all the questions I forgot to ask.

 

Luckily this time went very smoothly, and I was allowed to go home barely 24 hours after arriving at the hospital, pain wearing off and a little sleep possible at home.

 

But the worst part is still to come. The pain dissipates, but the job starts of processing what has happened and what lies ahead, and of communicating this news to family. These are always the toughest weeks emotionally. This time we had two hours or more of dedicated tele-meetings with wonderful experts, very illuminating but utterly overwhelming too, and a little foreboding as well.

 

The last difficulty with recovery is perhaps the toughest of all. Just like after my initial surgeries, I now know I am much more vulnerable to changes in my condition. That will be a constant worry for a while. I already notice the return of phantom symptoms. If someone asks if my hands are tingling, they immediately tingle. If I am prescribed more seizure medication, I conclude that a seizure must be imminent.

 

I know I have many things to be thankful for, and that also helps, in the end decisively. By the time we must face the next meetings and the treatments that will follow, we will be ready.

 

I apologise for being a bit morbid today. As usual, my main purpose is to crystallise my own thoughts. If my thoughts trigger anything useful in anyone who has a similar experience, that is a bonus. If it just depresses you, then I am sorry.

 

Perhaps now there will be no more surgeries, which is a sobering message in itself but at least spares me the cycle of anxiety and recovery. If there is another surgery, maybe I might even be smart enough next time to know that the part to prepare carefully lies not before or during the procedure, but after it.    

Moving forward or going round in circles

Only nine days have passed since we returned to New York after our idyllic month in Europe, but it seems much longer. The relentless humidity poses its constant dilemma of putting up with either the fetid atmosphere or the noise of air conditioners, and it is sobering to reflect that there are many more weeks to endure before we can expect any relief. Every year I promise myself that never again will I suffer a New York summer. Perhaps this time my hope will finally come to pass.

 

It did not help that I managed to pick up a covid infection on my travels home, which led to some mild cold symptoms but also, more annoyingly, the need to stay indoors most of the time and to mask whenever I was near others. Thankfully that seems to have passed, but it is my third cold-like experience since April so my resistance must be low.

 

The return to the US also seems to have heralded another new phase in my cancer journey. A scan on Friday was followed by a series of consultations yesterday. There does seem to be new tumour material developing, and now the added complication of a tiny new spot on the opposite side of my brain.

 

The situation does resemble the months after my initial diagnosis. Lots of tests did not help a lot to clarify the diagnosis, but after a while the oncologists decided to act based on their best available guesses. This time their first action will be a biopsy next Monday of the other side of my brain. The hope is that this will either show up the new spot to be harmless so they can concentrate back on the right side, or something less benign in which case new treatment will have to address the issues on both sides.

 

Whatever the findings, we are expecting this procedure to signal only the beginning of this new phase. It will probably take a few interventions before a decision is made for a prolonged course of treatment. Part of me is quite relieved that this is happening during the summer, when there is precious little else to do in New York, and with some apparent urgency, so that we can hope that our move to Portugal is not delayed.

 

Nonetheless, all the news yesterday was a bit confusing and disturbing and will probably take a few more tearful days to digest fully. We have been in this situation before, and that experience has given us some tools to help us cope.

 

Important among those tools is to find ways to stay positive and to be thankful. As usual, relief comes as soon as we focus our minds into those directions. It is a simple and wonderful balm.

 

One reason for cheerfulness is our confidence in our clinical team, notably our lead oncologist and his neurosurgeon. They are obviously both established leaders in their fields, and their communication and behaviour is exemplary. Yesterday, bouncing between consultations, I heard evidence of them changing their minds about the best approach at least three times. Some people might be annoyed by that, but I only derived positive emotions and insights from their indecision. They acted as a true team, consulting each other frequently, as well as allowing us into their deliberations, showing respect as well as humility. We are truly lucky to have these two gentlemen at our service.

 

Then I can always derive comfort from how I am usually feeling. How could I be about to keel over when I generally feel so well and am able to carry out such a regular life? There may be damage in my brain, but it still seems to be able to function quite well. When I look around me in the street on in a subway car, most of the people of my age seem to be much worse off health-wise than I am.

 

There were a few quotable quotes from my consultations yesterday. Each oncologist visit involves a series of cognitive and physical tests, and I continue to ace all of them, except for the glaring gap in my left-side peripheral vision, which is no great inconvenience. The oncologist delegates all this to his nurse practitioner, but I noticed yesterday that he watched quite carefully. His verdict at the end was quite telling. He described me as neurologically intact, a new term to me. It was clear that he was quite impressed with this, and I could only reflect how lucky I am compared with most of his patients at this stage of their treatment. Later in the day the neurosurgeon appeared to show a similar emotion.

 

Then I feel truly blessed with the support I have received from friends and family, especially from my wife. We trust our medical team, but it is even more valuable that we trust each other. During difficult weeks like this one, we have established a routine of stoic acceptance followed by quiet reflection and then shared determination to move forward together. It is so obvious to each other that our primary motivation is the welfare of our partner, as we continue our parallel journeys to different destinations.

 

 

Our team is also supported by our shared dream of moving back to Europe and being able to spend even a short period of healthy time there together. We can almost touch the moment when that dream can become a reality now. The shared goal binds us together. We occasionally debate tactics, but always from an attitude derived from that shared goal. This is another powerful blessing.

 

No doubt I will once again be consumed by dread in the hours before the procedure on Monday, and no doubt there will be even tougher challenges ahead, perhaps very soon. But, almost all the time, I do not find it difficult to remain hopeful and thankful. By now we also have a lot of experience to draw on. Whether the current set of challenges feel new or somehow a repeat of what we have already been through, we feel we are as ready as we can be to face them, and to face whatever consequences may follow. I will remind myself of that as I ride the subway on Monday morning to the next episode in this drama. Our mantra has not changed. Reject anger, accept fear and fate, find solace in thankfulness. We hope that this mantra can still guide us, no matter how many times we seem to go around in medical circles or how much uncertainty we face.