Cancer is complex -- biologically, physically and mentally. This is my blog to sort out some of that complexity. Diagnosed with follicular lymphoma in 2011, I started blogging about my cancer the day after I was diagnosed. Part mental therapy, part conversation, and part update, the blog talks about all the myriad aspects of being diagnosed with cancer -- symptoms, treatment, attitude, support, research and many other topics.
A couple months back, I posted this list about what I've learned from cancer. It's now been more than three months since my chemo ended; more than two years since I began the trip down biopsy road which would end with my follicular lymphoma diagnosis.
Along the way I've gone from anxiety and awkwardness (about disclosing my diagnosis) to understanding and openness, passing through a variety of states -- denial, ignorance --on my way there.
One constant has been learning. So before my next three-month check up in June, time for another list of what I've learned from cancer.
1. Maybe it's just me, but there seems to be a paradox among cancer survivors: we celebrate our successes quietly and we celebrate other survivors' successes loudly. Maybe it's that I don't want to jinx my own success, but the further removed I am from the inner circle of diagnosis, the more comfortable I become using words like "cancer free" and "congratulations.'
2. Every season in New England is the best season. I thought that before my diagnosis and I feel it more strongly now. It's not that I'm enjoying each season as if it's my last -- far from it. It's almost as if I'm enjoying each as if it's my first.
3. Anger is the most useless of all emotions, but passion and anger often get confused. Anger comes from darkness; passion comes from light.
4. Here's another cancer paradox: every cancer is different yet many cancers share similarities. No two people will present exactly the same, but on the biological level, understanding the similiarities of cancers -- not just of one particular cancer, but of cancers even of different origin, is one of the keys to unlocking treatments and cures.
5. There are few things better than watching a kid who has struggled at something, and really tried to get it, finally get it. Doesn't matter if that something is hitting a baseball or understanding quadratic equations. It's great when it clicks. (Okay, in truth, I didn't need cancer to learn that one.)
6. It's amazing how much research is going on into new drugs, new approaches to treating lymphoma, and in particular NHLs like follicular lymphoma. But every time I read about the "promise" of this or that approach, I want to scream: "Stop promising. Start delivering." It can be maddening how long it takes for drugs to get to market. Sometimes I feel like it's a race between drug discovery and indolent lymphoma growth.
7.Knowing you have cancer every day is different than thinking about your cancer every day.
8. Cancer sucks. No doubt about it. But smiling helps. So does laughing. It's hard to be angry, nervous, anxious or any other negative emotion if you're laughing. It's as if your mind is occupied with the laughing and it crowds out the other emotions.
9. There's a lot of talk about defensive medicine and over testing, and the burdens it puts on the health care system. But if my primary care physician didn't continually chase my initial complaint about a swollen lymph node that wouldn't go away, my lymphoma would have grown and grown until... who knows.
10. Don't worry about seizing the day, just seize the moment. That's good enough. The next scan, the next blood test, the next appointment is months away. It's tempting to want to rush to turn the pages in a calendar to mark the weeks, months or years in which we are in remission, cancer free, surviving. But it's better to live the days than count them.
It seems like a lot of my cancer blogging friends are stepping back. Some that were blogging regularly are doing so less so; others have turned the spotlight away from cancer, or even health, and others still, have flipped the light off and closed the door behind them.
I understand it.
I've written about how often I should blog, and if you closely examine the content of the blog over the past month or so, I seem to have veered slightly away from writing about my thought process and mental health as it relates to cancer. My last post didn't even mention cancer or lymphoma -- but then again, if you examine the early posts, I stayed away from the big C word. Denial? Fear? It wasn't accidental. As a writer, I usually think carefully about word choice so it couldn't be coincidence that a blog called,Thinking Out Loud: A Cancer Blog, didn't mention the word cancer. Most often, I would use the term, my diagnosis.
I'm comfortable now talking about my lymphoma, my cancer. But it comes at a time when my cancer doesn't have much to say. The chronology of a cancer crisis progresses like a nova. The intense light builds and builds, bursting to the forefront of your identity with such blinding brightness, that it obscures all other elements.
All you can see -- and all, you fear anyone can see -- is that white hot light of fire. The rest of your identity exists; it just seems invisible to those who can see that explosive brightness. This is why so many struggle with who to tell, and who not to tell. If I tell this person I have cancer, will they still be able to see me. Or will they just see the cancer?
But here's the thing about novas: they slowly return to their original state. Their brightness fades, and the rest of your identity seemingly shines more clearly. It's not that I have less to say about cancer, it's just that the bright light of cancer has faded. For some cancers -- those with legitimate cures, it may fade to black, leaving only a residue of light. For the more chronic cancers, the light will stay softly on in the background, pulsing with activity from time to time.
As the light grows stronger, it will be reflected here. And when we have found a definitive cure for follicular lymphoma -- not a push-it-into-the-background-and-wait-for-it-to-return treatment, but a god's honest, it's-not-coming-back cure, then perhaps both in my identity, and in this blog, cancer will fade to black.
Torn between writing about running or not writing, I'm going to write about running. Or at least I'm going to start by writing about running, again. I've found out during these past two months as both my frequency and distance has increased how important running is to my well-being. Yes, the exercise has been great and the shirts that didn't fit so well at the height of steroids and post-chemo carb-loading now fit a bit better.
What it really comes down to is that running is my quiet space. No email. No social media. No phones. No people. Just me and my music. The cliche often portrayed in commercials, books and movies is the runner's epiphany. Lace up the shoes. Take a few strides and answers to vexing problems crystallize. That never happens. Not to me, at least.
My mind wanders a lot when I'm running. It thinks about the lyrics of the music playing; it observes the surroundings; it usually grouses a bit about the lack of friendliness of other Boston runners (the runner's courtesy wave is all-but-never acknowledged on my Boston runs, and always acknowledged on my Barrington runs); maybe it bounces a bit from how to phrase an email or what to say to a colleague; it thinks about how to run a baseball practice; perhaps a couple of ideas will float in for a future blog post. and often, it calculates how far it is to the next turn, the upcoming section of run, how its body feels, and the pace of the run. It's rare that I even think of cancer, or my cancer, unless it's done with a little bit of n attitude. And after my mind's processed all that, I have a mile done and four more to go.
Then a wonderful thing happens.
Because for all the noise pumping through my headphones, running is my quiet space -- my meditation. It's my way of learning about myself. Because once the scattered thoughts have come and gone, and it's just me, my music and my running, my mind turns inward and stops processing tasks, and starts thinking about who I am, how lucky I am to have the life I have, and how I want to live. I almost always end runs feeling inspired and energized, not simply because I've released a few endorphins and burned some calories, but because of the quiet space I was able to inhabit for the last few miles.
Once upon a time, "how are you?" wasn't such a loaded question. Nor wasv"how are things going?" Or, "hope you're well?" Or "how's the family," for that matter.
When you think of it, "how are you?" is an impossibly broad question if you think about it literally. Of course, most people don't think of it literally, but then, I'm not most people. I have a need for accuracy that I've been told by at least one person in my house, can occasionally stretch my stories to a somewhat unbearable length. Matthew, fortunately, has inherited this gift. While his brother is the talker of the two, if Matthew actually gets going on recounting, say how Messi scored in a recent Barcelona game, the story might take longer than the game, even with stoppage time. But you will know everything happened before -- and after-- that goal with preciseness, if not conciseness.
Which brings me back to, How are you?
The meaning of the question lies in the interpretation of the answerer. And for someone who feels the need to be fullly truthful in their answer, that can be tricky, leading to long answers and awkward exchanges. When I was first diagnosed, I always took the question, often asked by caring people with a tilt of the head and a touch on the arm, to mean: "I'm so sorry you have cancer. How are you dealing with it?"
When I was going through treatment, I heard the question differently. It sounded to me like: "Oh, you're going through chemo? But your hair is not falling out. And I saw you running last week. Are you really going through chemo? Because if you are, you seem okay. Are you?"
But now, as I'm a day away from three months post chemo, I'm almost ready for the meaning of "How are you" to return to its rightful place on the shelf of available small talk.
There are still times when someone I haven't seen in a while will use the question, asked with a pronounced emphasis: "How are you?" to let me know that they know -- to inquire without inquiring, to ask about my cancer without having to say the "c" word. When you think about, it's a lot less awkward way of asking, than, say, "So, how's the old cancer doing?" as if my lymphoma was a bum knee that's been bothering me.
In the past, I might have tired to answer with an honest description including the results of my latest scans, and the details of symptoms related and unrelated to lymphoma. But after two years of being asked the question by a growing group of people in the know, I've learned to save the boring details for Dr. L, and answer, instead, based on my interpretation of the question: