I Used To Be Disgusted...

 'Tis the season. 

Not the holiday season but the season of end-of-year school activities. Beginning of summer fun. It's a chance to enjoy all the simple things that make summer great - longer days, sunshine and swimming pools, vacations and backyard barbecues, and seeing friends who we haven't seen in a long time. But cancer has a way of complicating even the simplest things.

Catching up with friends often brings the inevitable earnest inquiry: "How are you?" or "How's your health?"

The subtext of the simple question is: "I know you have cancer and I'm concerned (or maybe just curious) and you don't look sick but I don't want to presume and I I don't know how exactly to ask about it and since saying something like 'How's the lymphoma doing? Not acting up again is it?' seems inappropriate, I'll just ask: How are you? With emphasis." 

That's a lot of subtext. 

It's taken me a while to figure out how to deal with the question. It used to bother me quite a bit at first. There was one  friend who, if I hadn't seen him in more than a week, would ask that question, with particular emphasis. And to be honest, it would piss me off, like the very asking was an affirmation of the cancer that I was trying to ignore.  

Part of it, too, was that I didn't know how to answer. Sometimes I'd awkwardly say, "I'm good, how are you?" And sometimes I'd just blather on about when my next oncology appointment or next CT scan was: "Yep, I'm good. No scans for another year!"  But usually, I'd just say, "I'm good. I'm fine." And then try to change the subject as quickly as possible. 

I've been able to pivot, at least in my head, my reaction to the question.

Somewhere over the last four years, I cleverly realized that my lymphoma is going to be here whether someone asks about it or not. So I can understand now that, in most cases, asking about my health is nothing more than a concerned inquiry from a well-meaning friend. Being the friend of a cancer patient/survivor is no picnic, and people deal with it in different ways. Some avoid the topic. Some avoid the person. Others want to express concern and don't know how to do it. And others bravely venture forth. 

So next time someone who I haven't seen for a while asks, I'll simply look the person in the eye and say, "I'm doing great, thanks. And thanks very much for asking." 

--michael

p.s. -The title of the post comes from a great, old Elvis Costello song, or at least this phrase: I used to be disgusted. But now I try to be amused."  The song itself has nothing to do with the topic, but the phrase stuck in my head one run. Here's the song:

Keeping the Cancer Card in the Deck

Two years ago, this is what I wrote.

And later, this...

Two years ago, yesterday, I heard my diagnosis for the first time. It's interesting to read my first two posts -- back when this blog was private. But there's nothing in that private post that I haven't said many times in this quasi-public space. But what's more interesting to me is that yesterday came and yesterday went and while I knew the date, I forgot its  significance. That's a good thing. It means I'm not living and breathing my diagnosis every day, which also explains why I'm not posting as frequently. If I had remembered the date I would have prepared the post I'd been planning about my goals for year three. Instead, this is the post I wrote yesterday...

* * * * *
Many times, I've played the cancer card in my head.

It usually goes something like this, "Ha, but if they only knew I was a cancer patient, survivor, whatever..." 

While there were a couple of times when I did voluntarily disclose my diagnosis --  when I had to cancel my dentist appointment, for example, or  when I had to bag out of a softball game because I was still tired from chemo -- it was only in the hopes it would ward off any further conversation. I suppose I could have simply said I had some "health concerns" but I'm pretty bad at being vague. Disclosing my diagnosis as an explanation of why I couldn't do something (get my teeth cleaned, play softball) gave it context, and, I suppose, helped cut to the chase. 

Last week, I had the opportunity for a completely gratuitous disclosure and I'm happy to say that I left the cancer card unplayed. I was giving a talk at a content conference and there was a perfect spot in my talk where  I could have inserted that I was not only a cancer communicator but also a cancer patient. It might have added a little shock value to the talk, and I was a little curious to see how the room would respond. Would they perk up with renewed interest? Or simply go back to discreetly checking their email while pretending to listen.

I never found out.  

There was little context to the disclosure and in the end, I didn't want to elicit any unneeded sympathy; I didn't want the perception of  my talk to be influenced by my health status. "That was a great talk ... for a cancer survivor."  No thanks. We may all need understanding from time to time, but we don't need pity.

A common theme I hear from people who are ambivalent about disclosing their diagnosis is that they don't want to be known as "the cancer girl" or "the guy with cancer." If the value of my talk is judged by my diagnosis, then by extension my value is defined by my cancer. I've touched on this theme many times in this blog. Once cancer enters your life, it unavoidably becomes part of you forever. And at times cancer can define your day or your week or your month, but it never fully defines you. 

* * * * *

The goals for year 3 post is coming, but if you have suggestions for cancer-related goals, please share in the comments.

--michael

The Bright Light of Cancer

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.

--Michael 

Small Talk

Shortly after being diagnosed, Stacy and I talked about talking -- to the kids, specifically. We didn't talk about talking for a few more months, but that's a different post. And sometime last summer we had a conversation with them about it. Part of me was reluctant to do it, but part of me wanted them to know.

There was a decent amount of stress and worry around the house, particularly last July and they knew I was making a few trips to the doctor, had a little bandage on my neck. Something was up. And we wanted them to know what that was.

Between my psychologist, the Dana-Farber web site  and Stacy, we figured out a good plan to discuss with them. We'd explain that I had cancer, but there were a lot of types of cancer and they were all different. And my type, called lymphoma, also had a lot of different types (more than 50, if you're counting) and they were all different. So if they hear friends at school talking about cancer, or if they read about it in a book, or see it in a movie, they shouldn't think that's the disease that Dad has. It's almost definitely NOT that type. (There are very few plot lines that include a character with follicular lymphoma.) And most importantly, I was now seeing some of the best doctors in the world who did nothing but treat my type of cancer. They would watch it and when they thought it necessary, they would treat it. Our lives probably wouldn't be changing anytime soon because of the news - except that I might be making a few trips to Dana-Farber now and then. 

Noah had questions. 

Was this because of those bumps on my neck? Yes, those were symptoms.

Can I go play Wii now? 

Beyond that, there weren't many questions. And, here again, we run into the good challenges of being in  watch-and-wait mode; without treatment and any visible symptoms, the kids don't see anything different. So the issue has washed back out to sea with the tide of time. And we haven't brought it back onto the beach, so to speak.

A year later and I don't think it crosses their mind and we don't look for ways to remind them. There will be time and there will be a time. For now, let them worry about more important things - how to hit a fastball or how to deal with girls, for example. 

I'm still working on both of them.

Inching Closer to Public

Well, I shared the link to my blog post on Facebook moments ago. So now my tight group of friends and family who know is expanded to the 200 or so "friends" on Facebook, including a bunch of high-school friends who I haven't spoken with in about 30 years. 

Interesting.

It's not as if anything has happened recently that's driving this into a more public discussion. It's just that I might be ready.

It's hard to see your mindset change as it's happening. But over nine months, that's what's happened. In the beginning, I struggled with how to define myself -- cancer patient implies someone in active treatment; cancer survivor implies someone who has beaten cancer. Neither seemed right. I never said: I have cancer; I always said, "I was diagnosed with cancer."

Now when I look at it, I see why. Saying I have cancer is an admission of a current status. If I just say "I was diagnosed," it isolates it in the past (and in passive voice, at that). It's somewhat of a mental defense mechanism that I must have needed until I could wrap my mind around what it meant to have cancer.

I'd be lying if I said I know what it means, but I know what it doesn't mean. It doesn't mean I'm getting radiation. Or chemo. It doesn't mean I'm losing my appetite. Or my hair.

Right now, it doesn't mean anything. So I think in the next day or so, I'm going to flip the switch on the blog and go from a private blog open to just you all, to a public blog. The title: Thinking Out Loud: A Cancer Blog. And I'm going to try to commit to three posts a week. (You don't have to read them all.)

We'll see what happens. Maybe two people will read it and it will help them. Maybe two hundred will. Whatever happens, though, I'm ready.

Going Public

My blog post about Watch and Wait is now on the Dana-Farber blog.

Optimism

Most people would say Matthew keeps his feelings inside --unlike his brother whose emotional state is to open books what the Super Bowl is to football.

But that's not a true description of Matthew. He's actually far from stoic. When Matthew is happy or excited, it's pretty obvious. It's only when something's troubling him that he keeps it inside.

 Here's my theory.

 Matthew is an optimist. So when things are going well, there's no reason to hide what he's feeling -- it jibes with his overall outlook. But when things aren't going well, when your world outlook is sunny, but the world is giving you a skyful of dreary, what do you do? If you were to show that you're sad, upset, troubled -- that the world isn't as rosy and shiny as you like to make it out to be -- well, that just doesn't compute with your internal programming.  So you don't let on. You still project optimism, while internally you worry that the pessimists are right. You wage an internal battle of half-full versus half-empty. And if you're a powerful optimist, you can keep the pessimism at bay. But at times, the darkness is just overpowering and it escapes from the bottle it's been kept in.  (I'm trying hard to resist Star Wars metaphors here but they seem almost inevitable.)

Matthew, most people would agree, is a lot like me. And whether or not that's good for him is open for debate, but it's been helpful for me in dealing with my diagnosis. When I was first diagnosed, it was briefly overwhelming. Yes, it was a slow-growing lymphoma. Yes, it was treatable if not curable. Yes, I felt fine. But it escaped the bottle.

Briefly.

Then it got stuffed back in. With a relatively tight seal. I jumped at the good news of a potentially great new job close to home. I convinced myself that I might not even need to have treatment for many years. Maybe the somewhat ambiguous pathology was because it wasn't really cancer. (Never underestimate the power of the force.)

That's not going to happen. It is lymphoma. The enlarged lymph nodes haven't miraculously returned to normal (although my blood work has -- and I'm no longer anemic!) and a few nodes are slowly growing. It is going to need treatment sometime; if not in six months, then maybe a year, or 18 months. It's not going to be 18 years. But that's okay. I'm in great hands with Dr. LaCasce and with Dana-Farber. I won't go into the treatment options here, but there are many good ones, I'm told. And that's all I need to know right now.

In the last couple of weeks, Stacy and I have been talking a lot about how we share the news of my diagnosis. If you're reading this, then you know about it. But beyond a small circle of people who I see daily or weekly, I hadn't told many people. It's only in the last couple weeks, that I've started to tell my old high school friends, my college friends, my coaching friends, my old colleagues from Pohly where I worked for nearly 13 years... really anyone who will listen.

There are a lot of theories for this. Talking about talking about it helped. So did this great post from my colleague at Dana-Farber. But the biggest reason for the increased openness is that I've learned over the last six months how to have my bad news coexist not just with my optimism, but with my image of myself as an active, healthy person.

It's been a tough six months.Our cat of 17 years died; Matthew broke his elbow in such an unusual way that it's likely he'll never have full range of motion in his right arm; I was diagnosed with cancer; and I lost my job for the first time -- not just in my professional career, but in my life.

That's a lot of bad juju from Darth Vader's peeps.

But it doesn't change my outlook. It doesn't change me. I am an optimist.

--michael