Throughout the journey, I was struck by the theme of dichotomies, or dualities, as I reflected on my reactions, and the reactions around me. Looking at my reactions through a framework of opposites or contrasts gave me a better sense of where I was on a continuum, and how this evolved over time. When I was having a good week, I was clearly leaning in one direction, when having a bad week, learning to the other. Recognizing the dynamic helped ensure that I neither veered into depression or, at the other extreme, Panglossian optimism.
Much of this was challenged when I relapsed much sooner than expected after only 14 months. It took me longer to get back in the same space, it was harder and harsher on me and my mental state. And given my treatment options: do nothing and have further relapses and death within a few years, or go the high risk route of an allogeneic stem cell transplant, the stakes seemed higher.
Some of the key dualities that provided this frame, and which evolved over time, were:
A lot of the cancer-related reading, and some comments by friends and family, focussed on how normal anger was as a reaction. How can this happen to me? Why me, married with two children, and not my brothers, who were not? Does not all my efforts to keep fit, eat well, and have a balanced life mean anything?
Relapse made it worse: why could I not have the average 3-5 years before relapse?
However, I never really went there, even during the difficult days coming to terms with my relapse and the brutal options I faced, as anger did not help me, nor my family and friends, deal with what I had to accept and take as a given, whether justified or not. The darkness of anger, and its corollary, depression, simply did not resonate with what I had to do to get through the treatment, and support family and friends in their support for me. Tolle’s discussion of acceptance was helpful here, as is of course the acceptance embodied in many religions.
Related to the acceptance/anger duality was surrender/control. While much of the cancer literature and comment uses language like ‘fight’, ‘combat’ and ‘cure’, I found myself more inclined to surrender to the fact that I was no longer in control. I had to rely on my medical team for their advice and direction. I had to rely upon family and friends for support, particularly emotional. I also had to rely upon my colleagues and workplace for both emotional and practical support during my absence. For someone who is normally ‘in control’, the ‘being in others’ hands’ shifted my perspective, and a new appreciation for the importance of others. Interdependence and the implicit trust with others that it entails became key to viewing my relationship with others, whether family, friends, colleagues, or my medical team.
While overall I needed to surrender, I also needed to figure out where I could and should exercise control. Surrender was the big picture, the devil was in the details. For me, control happened on a number of levels:
First, it meant engaging substantively with my medical team and being on top of ‘my file’. Post relapse, I became more involved, provided more feedback when things were not moving as quickly as they should, made stronger and more pointed suggestions regarding treatment options, and insisted on a second opinion.
Secondly, and on the emotional and psychological level, it meant using the time available to me during the treatment – and between treatments – to achieve something. For me, this was a mix of walking with my wife, wonderful connecting time with her, as well the comfort of physical movement and enjoying nature and being outdoors, as well as ensuring I remained connected to my kids. It also meant coming up with a reading list, my own and suggestions by friends, to keep me intellectually engaged and alive, rather than watching videos. And travel, both during my remission (family holiday to Australia, Paris getaway with my wife) and between the ‘salvage’ chemo and my stem cell transplant (another Paris getaway with my wife) was an important part of feeling alive, experiencing life, and creating memories together.
Thirdly, writing remains a way to make sense of it all. During my initial treatment, this was through a daily journal, keeping track of what I was going through, both emotionally and physically, reinforced by my weekly updates to staff and colleagues, which then turned into my blog. During the initial phase of my relapse treatment, I focused more on the blog, developing it further through finding and sharing health related articles that resonated with me. The mechanics of the ‘salvage’ chemo, and the largely repetitive nature of the side effects, were less interesting, and the emotional and treatment option discussions were best captured in the blog. I expect, however, that I will need to journal the stem cell transplant process and aftermath, given that it will be new to (and hard on) me, with the consequent need to track it carefully.
One of the first bits of advice I received concerned the need to focus on myself – I had to look after myself. And in a very real sense, this was true, the lymphoma affected me, I was the one being treated, I was the one whose mortality was in question.
Yet at the same time, it was not just about me. First of all, it was about my family, and the impact that my journey was having on them, and how much we all relied on each other. It was about my friends, and it was also about my colleagues, given again the degree of mutual reliance and support.
My realization and focus shifted from the ‘me’ to the group, and what I could and should do to support them. The degree to which I could support them, through being open and sharing what I was going through, and focusing on acceptance rather than anger, would in turn help them provide more support to me, a mutually reinforcing circle of support. For me, it was about me with the group, not me and me as an individual. Interdependence, not independence.
This became even more acute when facing the options of doing nothing, and essentially having up to 2 years to live, or taking the high risk of the stem cell transplant in the hope of living longer. When our son asked me what I thought of these options, right after receiving the brutal second opinion, reflecting on the spot, what came out was the importance of being there longer for my family: had I been alone, doing nothing without the risks of the stem cell transplant might be attractive; having a family, being with them for as long as possible and for more of the milestones of our kids became more important.
Partially influenced by Tolle, I was struck by simple awareness as distinct from thinking and analyzing. My natural personality is analytical, which has served me well professionally, but has led to struggles at the emotional or psychological level. Having the requirement to reflect upon something that defies in many ways analysis was salutary and helped me come to greater awareness. In many cases, this was as simple as going for walks and being more observant and attentive to natural beauty, whether flowers, trees, the sounds of the birds, the way the light played with the leaves, and the spectacular vibrant fall colours. It was ensuring that I was truly there when talking with my family (the Blackberry was off both literally and figuratively – and it felt good when I finally gave it up!). When I was particularly weak, I found comfort in listening to classical music and just letting the music wash over and through me. Our Paris getaway between treatments gave both of us a needed break from the rock and a hard place options before me (and us). I did not meditate but took more of a conscious effort to find moments simply to be, rather than analyze.
I found outlets for my analytical nature. Being on top of my file for when I met with my specialists, my extensive reading, and writing this blog and my daily journal all helped me analyze what I was going through and helped me feel more in control.
Finding the right balance between acceptance/anger, surrender/control, individual/group, and being/thinking helped me develop the necessary attitude not only to ‘carry on’ but to appreciate the good days and moments. Much of the literature and folk wisdom stress the importance of attitude. I am not sure this has been empirically demonstrated to affect overall lymphoma success rates (i.e., through control groups – see post on How positive thinking affects patients with serious illnesses). However, it clearly makes the journey easier on oneself and the people who care about one, and allows one to enjoy and appreciate what one has, particularly people, and time with them and doing things one likes. Many commented on my positive attitude, and their comments in turn reinforced this.
This is not the delusional positive thinking that Barbara Ehrenreich rightly criticizes in Bright Sided, for after all, cancer, particularly an aggressive form like mantle cell lymphoma, is not just a ‘learning opportunity’. And no measure of positive thinking can wish it away.
However, given the alternative, a positive attitude to dealing with it, and sharing that attitude with family and friends, recognizing this interdependence with them, all makes an enormous difference. When I was suffering from side effects, ‘this too must pass’ was my way of getting through. When I was not, more than half of the time, I consciously tried to take advantage of that time, being with family and friends, going for walks, reading, doing a number of small projects (organizing family photos, videos, writing this blog).
After relapse, and facing a stem cell transplant and attendant risks, having a positive attitude was much harder, particularly given the poor odds (only 2 of 5 people make it) and the risk of a seriously compromised quality of life from chronic Graft versus Host Disease (GvHD). This was a greater fear than death.
Fortunately, I made it to the one-year mark with only mild GvHD, and only a few bumps in the road after the initial first few rough months.
The ultimate duality.
While the other dualities came early and easily to me, later on, well after the immediate danger zone of my allo SCT, I realized I had missed the obvious duality between living and dying. Perhaps it was so embedded in the decisions I took, my wish to be as active as possible, and my ‘this too shall pass’ attitude when times were rough.
I think for most of us who have cancer, or experience a heart attack or equivalent event, this living/dying duality makes us more appreciative of being in the moment, not taking time for granted, and shifting focus to the short-term, when we can do things, from the more uncertain longer-term.