My Happy Place

 The treatment continues to work as intended, proving tolerant to me but attacking the cancer cells in my body. I am well into the more gentle regime of five nights of oral chemo each month and little in the way of other medication. And the last two MRI scans have shown as positive a picture as the oncologist could hope for. This pattern is not uncommon, but is far from universal, and is a great blessing and source of hope, even though statistics say that the cancer nearly always returns eventually.

 

Best of all, we were cleared to travel to Europe. We arrived in Portugal on May 19 and will stay here until June 17, after which we will spend one further week in Italy before returning to the USA. I must take one cycle of pills while here, and also visit a local lab for a blood draw each week so the oncologist team in New York can continue to monitor progress somewhat. I also have to be especially careful in the sun.

 

Portugal, and specifically the villa I bought in 2005, has been my happy place for a long time. To me, Faro airport has its own unique smell and arrival there signifies many blessings in my life. It is where I relax with family and friends and ponder all the reasons to be thankful in my life. What is most remarkable about this visit is how my nausea disappeared the moment I arrived here. The previous cycle included regular bouts of manageable nausea, but in Portugal I have only noticed a slight passing twinge once so far. My appetite is back to its normal state too, so we have been able to enjoy the full range of fine food and drink here.

 

The other remarkable thing about this visit so far has been that I have found myself to be emotional a lot of the time, with frequent bursts of tears. It took me a while to understand what lay behind that, but I think I worked it out eventually.

 

Goodbyes are the hardest part of my emotional journey, and this trip has already included several. My son-in-law had to leave after just a few days, and yesterday my daughter and her daughter also left, on the day before Kiara’s second birthday and her last day of eligibility for free flight. Spending time with loved ones always has a bittersweet element in the new situation, and it always leads to a mixed menu of mixed emotions when I am with my daughter and grand-daughter. I find I am the subject of more photos than usual and I am called into more deep conversations too. My family has also signed me up for a service called Storyworth, in which I am asked to write on defined topics each week. It is a bit like blogging, and it is clear that all these unusual projects are nakedly about creating memories for after I am dead, especially for baby Kiara. I go along with it and even appreciate it, even if the context is rather sombre.

 

Then we are also using this trip to simplify my affairs in Portugal, so that my daughter can take over seamlessly when the time comes. My wife had a theory that implementing some of these changes, after all a preparation for death and a significant concession of control, might be one reason for the tears. It is possible, but I don’t think it works as an explanation. Actually it has been a relief to get the necessary administration started, especially because my wife and daughter have bonded over the project and I can live free of worries about any future disputes.

 

Even so, all those practical changes might have left an emotional scar. The goodbyes certainly did, with the prospect of many more in store over the coming weeks. The deep conversations can be tough and have also surely contributed to some emotional consequences. Part of this is about our change of mental timeline. A couple of months ago we felt unable to plan more than a month or two ahead, but now we have allowed more optimism into our minds and even talk about 2024 sometimes. It is good, but it does not change the fundamental situation so can be tough. And the new horizon makes such discussion more complicated too, involving many dilemmas and trade-offs. 

 

 But I have decided that none of these are primary causes of my tearfulness. One sure primary cause is a torrent of thankfulness. Portugal and time with loved ones always cause me to feel thankful for the unusual range of blessings in my life, past and present. This trip has already surfaced an abundance of happy memories, as well as much present joy.

 

But thankfulness does not explain it all. I have worked out that I am also mourning. I am finally mourning the loss of a large part of the anticipated shared future for my wife and I in retirement in Portugal.

 

It was just about now that our plan was for my wife to retire early and for us to move permanently here. That notion had given me much anticipated joy in recent years and it vanished on the day of my diagnosis. We both quickly realised that it makes little sense for my wife to plan to live here as a widow, at least not until she is much older. We could hope for some joyful visits to Portugal. In our new mood of optimism we can even open up possibilities of spending much of my remaining time here together. But the dream of a long, peaceful, idyllic life here together is no longer realistic.

 

I started this mourning process in the frenzied steroid-charged days and weeks following diagnosis, in the same way that I also started the administrative changes that we are implementing on this trip. I suppose the steroids did their job. But the administrative changes eventually required a trip here, and I believe the same is proving true of the need to mourn.

 

I have been calmer in recent days and am hopeful that the mourning process may be running its course now. Even if there prove to be more tears, I know that the tears are healthy ones in a necessary cause. I am in my happy place. We have achieved what was required administratively. I am surrounded by love and full of thankfulness. There is joy to be had from memories and from current experience and even from some anticipated future joy, even if the final category of joy has been curtailed somewhat. And that requires some mourning. Bring it on.   

How have I changed?

 Nine months from the initial symptom and six months from the primary diagnosis, I took time to review how the dramatic events of recent months have changed me. The physical changes are most obvious, though sometimes easy to overlook and downplay. But there has also been ample opportunity for changes to how I think and behave. My conclusion is that the changes in these areas are probably unusually minimal, and that is a good sign.

 

While I am still functional, I have to accept that the disease and its treatments have had physical repercussions. The most significant impact has been to my eyesight. Two weeks ago I saw my ophthalmologist and the latest field vision test made clear that my left sided peripheral vision is indeed much worse. What before was a scary but smallish black circle on the chart has become a vast sea of black on the whole of the left side. While I no longer see apparitions and the double vision has gone away, the left side is very much limited. Being careful, I manage to avoid tripping and it is rare now that I bump into people or things, but I am certainly only fit to drive very short distances. I can read, watch TV, and sing, but I suspect my competence for all of these activities has diminished somewhat. I believe it is the secondary effects that have an impact, in the same way that if I misplace something small nowadays I often struggle to recover it. I can read the music with few errors, but am I hearing the ensemble sound as well as I was? I now have to rely on replay to see what is going on in all sports, and I also find that I am not following the plot of a TV show as well as I was before, even with the volume set louder than I used to have it. Still, my brain is adapting, and I am broadly functional, so I will take it.

 

My other significant physical issue now is recurring nausea. Whereas the vision problem comes from a combination of the disease and its treatments, I understand nausea to be only from the oral chemotherapy pills I am now taking five days per month. The job of the active ingredient of the pill is to hang around in my body as long as it can and to kill off cells it does not like. Mercifully it seems to be doing an excellent job and my body is tolerating the treatment well, but the nausea is a downside, and seems to hang around for several weeks after a cycle of pills. I am averse to loading myself up on too many anti-nausea pills, and in some ways I also welcome the nausea as a sign that the main pill is having an effect.

 

When my mood leads me to silently complain about my physical limitations, I find it helpful to consider the ways in which I do not suffer physically. I still pass all the motion and strength tests easily, and also the cognitive ones. I am not bothered by headaches and have avoided fevers and infections so far. I do feel a bit wobbly sometimes and have to take some care when moving about, but I still feel safe on the streets and in the subway. I do find an urge for a nap once or twice during the day, but so far have not felt so tired at a choir practice that I have asked to finish early. Immediately after the operation I was lucky to avoid any referral for physical therapy, and the longer that situation pertains the better, as far as I am concerned.

 

So there have been physical changes, and no doubt I can expect more over time, and some of these might involve accepting some unwelcome compromises. But what about changes to what I think, my attitudes and values, my overall frame of mind?

 

I have learned that this question needs framing as well to take account of the effects of medication. This was most obvious with steroids. For the last three months of last year I was taking dexamethodone daily, and this had a significant effect on my personality. I was more active, more direct, more opinionated and less inhibited in expressing those opinions. I was full of energy, especially early in the morning, and rushed into many legacy type projects.

 

Looking back on that time, it was probably a good thing, for my mental as well as physical health. I needed to find the strength to sort out various financial matters somehow, and the steroids gave me that strength. I could even take quite a sanguine attitude to the possibility of death or disability from the first two biopsy procedures – the alternative of crushing fear would probably have been less useful, and put even more pressure on my family.

 

But I have only taken ten days of steroids in the last four months, with no immediate prospect of needing to go back to taking them. My personality is my own once again. How does that compare with how I was twelve months ago?

 

There are certainly changes. Nowadays I am prone to burst into tears with little provocation, usually when I am alone and thinking. I am not sure whether this occurs out of sadness, or fear, or love, or being overwhelmed, or physical issues. It is probably a combination of all of these factors. Most often I feel tearful when I contemplate the years ahead facing my wife.

 

Some things don’t bother me as much as they used to. I find it easier now to be extravagant and generous, though I have hardly become spendthrift. I booked the flights to Europe without much care for their cost and we will probably splash out a bit while we are there. I am also less invested in the daily news. I find it easier now to ignore the Trump circus and all the related US political circuses, and I think I am a bit less judgmental about America and Americans generally. The world does not need me to sort out all of its problems, and I retain an optimism that the generation of our kids will achieve great things. I remain critical of US policy to China, mainly because of its negative consequence for human development. The coming AI revolution will most likely become another lost opportunity in this regard, or worse. But again I do find it easier to put aside such thoughts than I used to.

 

I guess one dimension where many people in my situation would change the most would be spiritual, yet I find my whole approach to religion and spirituality have not changed at all. I assign this to having had mature and thought-through positions beforehand. I may prove wrong, but at this point I can’t see myself rushing to God as my situation deteriorates, though I am fully content for my loved ones to find solace in religion.

 

I also don’t witness major changes in my key relationships. My marriage seems even tighter now than it was twelve months ago, and we certainly know each other more thoroughly than we did. The same holds true for my children, and I am grateful that I have no sense of unfinished business with anyone.

Thinking about it, what seems most remarkable is how little my daily routine has changed compared with a year ago. I still potter about doing the groceries or laundry, read and write, walk and swim, follow sports on TV, and traipse into Manhattan for choir practices.

What does this mean? Am I so limited in imagination not to be able to dream up more interesting ways to pass my time? I prefer to conclude that I am content with my daily life, and was indeed content before. I am delighted that my wife has kept her routine too and is invested in her work - she has a longer future to prepare for.

 

We will all need to endure many physical changes when a serious disease strikes us, but I sense I am lucky and unusual in not having had to navigate much change in my attitudes and relationships, certainly once I had managed to move past the steroids. Perhaps I was a stubborn bastard before and simply remain the same now. Perhaps I was lucky that my core relationships have allowed some serenity under pressure. In any case I can only pity those fellow sufferers whose lives have been upended mentally and emotionally as well as physically. One way or another, I have so far managed to avoid such turmoil.

 

I may be wrong, but my short answer to the question about how much I have changed would be “not much”, and I believe that answer, if true, to be one more cause for gratitude.