I was skulking around the house last week, ruminating on just how bad I smelled. My wife was getting annoyed with me, insisting that I did not smell any differently; it was a hot, stagnant summer day and I was sweating (I felt) profusely. My chemo treatment was beginning to purge from my system and it seemed to me that as I would walk around a corner or even just turn my head, I would get a wiff of something nasty, putrid, sour. And I couldn’t shake it — that smell was just plain bad.

But it couldn’t be identified, or even located. And I was the only one smelling it.

Then I started to take stock of all my symptoms, which I do now and then as both a way of monitoring my body and keeping a sense of humor about the process. Because it can be pretty gross. Let’s face it, no one likes to think of themselves covered in puss-filled sores, hobbling about on swollen feet and wafting fetid breezes from God knows where throughout the room. At least I still had my hair, although at 48 it is hard to deny the change in hairline and overall thinning regardless of the chemicals attacking my cellular DNA. My fingernails, though markedly clearer than they had been my entire adult life (always with little clouds and ridges for some reason, now suddenly looking pristine and even), suddenly became prone to breaking, noticeably thinner and in constant need of a trim lest they snag and tear. But the acne, the array of hard lumps I had contended with for months up and down my back and through my waistline, was finally showing signs of serious change; it was healing, slowly, and it no longer plagued me with itching or soreness, but it was being replaced by those little blemishes I still remember so well from my teenage years. Tiny whiteheads were popping up on my face and arms exactly how they had not been doing for approximately 30 years.

When I last met with my oncologist, I mentioned the acne to him. (And the nails. And the incredibly acrid smell of my urine, which left a burning sensation up my nostrils. Sometimes I overshare.) We laughed about how those pimples really just made me feel young again. Then I told him how incredibly silly it seemed to focus on any of these side effects because, other than the swollen feet that I had specifically wanted to talk to him about, none of these were truly interfering with my life. I called them small annoyances and said that, really, other patients seemed to have it so much harder.

He smiled kindly at me. He’s good that way, with a gentle demeanor and soft voice that must help in the delivery of difficult news. Then he said he wasn’t so sure about that. He said that he felt it was much more about my approach than the symptoms themselves. This insight of his made me take pause. Did that mean that I was much worse off than I had thought? Of course not, because clearly I wasn’t. I felt only as bad as I felt. And I did not see the point in dwelling on things I could not immediately change. I did want to mitigate any symptoms as quickly as I could, which was why I rambled on about even the littlest of them sometimes, in the hopes of raising a light bulb of inspiration that would take one or another of those annoyances away. And I really wanted to get rid of the swollen feet. But the idea that those annoyances could control my life, drive my perception of the treatment or — worse — inhibit my recovery in some way, well, that was something I would not be able to accept. Because I’m in control of “me,” not a bunch of random inconveniences.

Then it turned out, miracle of miracles, that my oncologist deemed it a good idea to cut my steroid use in half. The thing about steroids in chemo treatment is that they perform two basic functions. First, they help prevent (or mitigate) allergic reactions to the chemotherapy drugs. Since I have never shown any sign of an allergic reaction, we felt it would be safe to reduce the use for that purpose. If I have a reaction, the dose will go back up. Second, they help prevent nausea. I also have not been having any problem in that regard, and if I do there is some anti-nausea medicine in my cabinet just in case. If I am vomiting after my next round of chemo, then up the dose will go.

On the other hand, if all goes as hoped, I might be able to cut back the steroids even more. And that would be great, because steroids mess around with my head. They make me slightly dizzy, a little forgetful and distracted and extremely tired (partly because of the dizzy stuff and partly because they keep me awake most of the night). Steroids are also very likely the reason that my feet are swelling up.  And the reason that I am irritable or overly emotional some of the time. I don’t cry at every old song I hear quite as much at this point, so I may be getting used to some of the steroids’ effects, but it is still a good bet that I’ll function better without them in my system as much.

Relishing the good news about the steroids, I found myself in a pretty peppy mood for the next few days. My daughter’s school had begun again and I was seeing a lot of people I had not seen in months. We were talking about our summers and swapping stories. Inevitably, I was getting checked in with about my health, about how the treatment was going and whether there was any new info on my cancer diagnosis to discuss. It didn’t take long for it to come up that I was “looking well.” Or that I seemed very positive. Heck, I was in a good mood. I’d been on vacation. I’d been given great news about my steroid use. Things appeared pretty positive to me. Then I was asked how I managed to keep a positive outlook. You know, because CANCER.

I responded about how I initially approached everything very blah blah blah science blah blah blah reason blah blah blah methodical blah blah blah what was the point of being a total bummer around other people… Of course, I was probably losing my friend’s interest at this point, because I think I totally misread the actual question and was dangerously close to going off on one of my rants about the noisy clutter of misinformation abounding in the realm of Internet-based advice. As I was about to shift gears, a few other people approached, conversation shifted and my friend had to leave. But it left me thinking about how my cancer diagnosis actually did affect my perspective, how it affects every patient differently and what we can all do to focus on the positive aspects of our new perspectives.

It probably is no surprise that I have read a few blogs by other patients dealing with lung cancer specifically and other cancers generally. Even before my own cancer diagnosis, I had read a few in preparation for the possibility. And for months now it has been good to check in and see just how out of range my comments or experience might be. Every now and then, an author has died or simply stopped keeping up the blog without an obvious reason. Most of what I read, however, falls into two camps. On one end lies the blog of the self-professed cancer survivor who really is trying to sell things from the “alternative medicine” world of pseudo-science. In those cases, it is usually readily apparent that the author knows little about cancer and might even be faking the experience as a means of gaining credibility for a potentially harmful treatment. None of those sites really offer much in terms of personal stories that inspire, mostly because the stories that are there do not entirely make sense. I vastly prefer the authentic blogs by patients who detail their struggles and how they have come through their cancer treatment with a positive outlook on life going forward, especially when they are not trying to sell you miracle cures or some other basket of lies.

One of the defining elements of these inspirational and empowering blogs is that they share a sense of purpose. By that, I mean the authors, each in their own way, has a reason that they want to live that goes beyond merely not wanting to die. Perhaps it is the desire to have a child and watch that child grow. Perhaps it is something yet to be accomplished creatively or professionally. But these are not idle patients, they are people with motivation to continue living and growing as people. This is something that maybe shouldn’t be so extraordinary in and of itself, and yet it is.

When I received my cancer diagnosis, I knew that I had a choice of either living my life full of doom and gloom or approaching each day with a sense of humor, light and purpose. My wife asked me around that time if I truly had thought about my passions; she suggested that I take some time to think about the things I really wanted to do with my life. It was good advice. But the fact was that, in this special way, the diagnosis was truly a gift.

For the first time in many years, it was clear to me what I wanted to be doing. As a writer, I’ve had the (perhaps stereotypical) problem of beginning more projects than I could ever hope to complete, shuffling them one on top of another and never managing to work squarely from either the top or the bottom of the pile. It always amazed me when a project would actually be done (unless I was getting paid and had a hard deadline, but I’m talking about the work I supposedly “wanted” to do for myself). But now I had this new thing offered up in the form of adenocarcinoma to make me really focus on what is important. The source of my love. The things that bring meaning to my existence.

Interestingly, my “bucket list” is very short. While there are certainly thousands of places I would love to visit, I don’t need to go far to experience true beauty or peace. And though being a world leader was a really cool job aspiration, I’ve long since decided that I’m comfortable if I only influence people one individual at a time, even on single issues. But let’s face it, my future as President is most likely shot now (thanks, Internet). But that list, which up until then had been basically scratched out in faded pencil, was now printed cleanly with indelible ink. The word “no” became a whole lot easier to say. So did the word “yes.” When my daughter would hold my hand, I swear I felt it more. Suddenly, everything became much more simple. Things either mattered or they didn’t. There was an abrupt lack of bullshit. I also realized that although the list was short, the work required to meet my goals would be long and I had no time to waste getting started. Opening my eyes with this subtly new perspective was certainly one of the reasons my outlook has remained positive.

There is this notion that we should all live every day as if it is our last. But I don’t think that really nails it. In my mind, we should approach every day as if it is our first. Because if our eyes are going to remain open and focused, we are going to have a lot to accomplish and it all starts from the present moment.

When I read the stories of other people living with a cancer diagnosis, going through treatment and working hard to ensure that they reach their next milestone, I consistently see people with an acknowledgement of their past struggle, an eye keenly focused on their future goal and, most impressively, a strong sense of being in the “now.” Sometimes I think how nice it would have been if my younger self had been aware of how great each moment is. But as a younger man I spent far too much time living in the past or escaping to a future that never quite unfolded the way it had been planned. Wisdom comes in many forms, supposedly with age (although I’ve seen plenty of examples to refute that theory) and often with experience. It is always there to be tapped. In a weird way, that is what cancer seems to represent for a lot of people: the little spout being pushed into the keg that focuses the potential wisdom inside.

*****

Below is a video that I found particularly inspirational. Emily Bennett Taylor is a young, highly driven woman with a pretty amazing story. The speech here is worth watching through to the end. Her cancer had snuck up on her in a way very similar to mine, albeit much earlier in her life. Her response to chemotherapy was remarkable by itself, aided no doubt by her overall health and very healthy approach to treatment, but her aggressive and focused approach beyond that is one of the things that really sets her apart in the world of cancer anecdotes.