A Collection of Random Thoughts

• I was driving home last night and feeling rather healthy. Some minor aches and pains were finally abating, a minor cold had passed and I had that post-sick it's-good-to-feel-good feeling and I thought, "Why the hell am I getting treatment?" I get it. Cancer inside growing. Treat before I feel sick. Still...

• I haven't feel like blogging much this week -- just not in the writing mood -- yet I've missed writing. That's an enigma, a catch-22, or ironic -- I don't know which. But I know that if I waited until everything was roses and sunshine before I wrote, I'd never write. Or put another way, the time I feel least like writing is the time I most should be writing. That is irony. 

• Yesterday morning, I read this blog, 100 Days of Real Food and was thinking of taking the 10-Day Pledge. Last night, I had wings and pizza for dinner. Oh well.

• Our team is working with one of our oncologists to create a video about "what to expect on your first day of chemo." Great idea. I've got a list of questions you can address in the video
• 
  As always, Momastery had a great post the other day. It was about addiction, which although far afield from this blog, reminded me of something I was told about a year ago, which went something like this: "Everyone has or will have some disease they have to fight, now you know what yours is." (Apologies if I mangled the thought, but that's how I processed it.) 

• As Yogi Berra would say, I feel like it's deja vu all over again. Having a hard time making decisions about who to tell that I'm starting treatment, just as I was when I was first diagnosed. I'm coaching soccer again this fall and I was debating telling my co-coach, but then, he doesn't even know that I have lymphoma. And what do I say? Of our 8 practices, there might be one where I might feel a little tired? So what?  It'd be easier to say, "Hey, read my Thinking Out Loud blog." 

I'm feeling the same way about my coworkers. I have a staff of 15 and five peers within a 40-person department. Who do you tell? It seems to make too big a deal of it to announce at a team meeting when the reality is, I expect the only difference externally will be that I'm out of the office twice a month for the next 4-6 months.  Do they really need to know why?

I think what I struggle with is dealing with people's responses -- or more accurately, I worry that I'll be affected by their responses. As I've said before, I've always been horrible when I've been on the other side of the conversation -- I wouldn't know what to say if someone told me they were going into treatment. It's hard to find the right empathetic balance. I, and I'd guess people in general, either lean too heavily on sadness and condolences, which makes the whole affair graver than it needs to be, and makes me feel like it's a bigger deal than I want it to be, or they veer to the other sunny-side up extreme.  

It's hard to find the happy middle -- and hard to stay there once you find it. The emotions are  like a perpetually moving pendulum, constantly shifting from  extreme to extreme, and only for a slight period traveling through the balanced middle.  

 

The balance is so elusive because it's a complicated mix of emotions -- and if empathy is understanding how someone else is feeling, it's kind of hard to get the right empathetic response if the feelings (optimism, anxiety, relief, fear, stoicism, pity, anticipation, anger) are constantly moving.  And for me, I feel that the tone of the responses will sway how I feel. It gets back to the central issue of control. If others cumulative response sways how I feel, then by telling more people, I risk having less control over how I feel. 

If cancer is going to teach me anything, it's going to be how to let go of this need for control.

-michael

Can You Hear Me Now?

Another connection between marketing theory and philosophy/spirituality.

Did you ever notice that after you make a major purchase or decision, you suddenly are inundated with messages (subtle and direct) about what you just bought? Let's say you bought your first Honda - it seems like every car you pass is a Honda.  Well, maybe Honda is a bad example because in my town, every car you pass is a Honda, specifically a gray Odyssey. But you get the idea. It's similar to the cognitive dissonance theory.

But let's look at another example that has nothing to do with purchasing.. Let's say you're reading a book or an article and you encounter a new word -- or even just look up a word that you didn't now. All of a sudden, you find that word in every story you read; in books, newspapers, even emails.

Did your purchase or your discovery spark a rapidly developing trend? Suddenly, everyone is using this brand new word? Of course not. Your brain is now just alerted to its existence - of the new word, the new car, the new food, the new friend. Whatever.

I've been reading the Momastery blog a lot this year. Yes, it's gone ridiculously viral and that's brought it to my attention. But two years ago, would the messages of a bruitful life (beautiful and brutal), of faith and hope, of individual kindness and understanding have resonated with me as much?

Probably not.

Did I just discover it because I'm more attuned to the message now, or did something more powerful than Facebook and Google,  help me discover the message now that I'm prepared to receive it?

-michael

A Relaxing Routine

It's been a little quiet here at TOL. Although I managed one post this week, for the most part, it's been a low-tech week.We were on summer vacation and taking a week to disconnect a bit, and enjoy some simple things - like swimming, kayaking, playing cards, and reading books.

A view of Lake Winnipesaukee
from the top of Abenaki Tower

It's our vacation on the lake and it's been a  summer staple for us since before the kids were born. We've been visiting the same town, on the same lake since 2000. And since 2005, we've been staying in the same house. There's a serenity in the sameness; a calmness in the expected routine, even if it changes inch by inch as the boys -- as we all -- get older.

The last two years have been physically the same, but mentally, worlds apart. Last year, I was just starting an ill-fated new job and about one month past my diagnosis. My world was changing in so many ways and as good as it felt to be away, my head wasn't really there. I was consciously trying to sort out how to make my new job work out (that was a waste of time) and unconsciously trying to sort out how to make my new post-diagnosis life work out.

Sunset over the lake, a view from our dock....Ahhhh...

This year, I'm back in a more stable and interesting job, and I left for vacation on the good news that the diagnosis (and thus treatment) was the better of the two possible outcomes. I could disconnect and leave both my job and my cancer behind. No checking work email. No daily tweeting. No blogging (either reading or writing.)

Of course, no matter how much you disconnect, a cancer diagnosis is never that far away. And I'd be lying to say that I never thought about it. I emailed back and forth a bit about the scheduling of my upcoming treatment; I talked about the logistics of that first treatment cycle. (The first day is between 6 and 10 hours of infusion!) The truth is, I didn't have a whole lot to think about, or to blog about. I begin treatment on September 13th, and sure, I'm hoping that the side effects will be minimal or unnoticeable. I'm hoping that I can continue to work, play, and live as I have been, with a couple days aside every four weeks.

Planning about the future (e.g, what will I bring to keep myself entertained on that first day) is different than worrying about the future. As I've said before, the present is the only thing you can change. When I begin treatment, I'll know how I feel, and I'll take it from there.

-michael

A Goal

Vacation mode.  As I spend the waning days of summer (or at least some of them) on vacation, I'm spending less time in front of a screen. At first, I was spending more time in swimming pools and amusement park rides.  Now I'm spending more time sitting on a deck and watching the sun reflect off the lake. Life kind of slows down at the lake and that's a good thing. But the combination of a leisurely pace and nothing new happening means not much to say on the blog front.  

That said - I did have one idea kicking around in the form of a goal.

The day after I turn 50, I'll start my fourth treatment cycle. 

That's the schedule as it stands today. And that could be the beginning of the last cycle. Even if it isn't, the treatment should end by February. That's the plan: 4-6 months of beating back the growing lymph nodes and then.... I don't know. The theory is, we go into remission but it's been a long year of living with growing lymphoma, that it's hard to imagine a time when they're not growing. And in reality, they probably will be growing, just so slowly that it will take a long time before they're noticeable again. 

Hopefully, a very long time.

 My goal: cancer free for my 50s. Given the average remission rates for follicular lymphoma, that may be an ambitious goal. But as far as cancer patients go, I'm youngish and healthyish -- and I don't expect that to change, even with a treatment plan that spans my 50th birthday.

--Michael 

One of These Things is Not Like the Others

My hair will stay. (More later on why that's important to me.)

The results are back and it's good news. There is no presence of cancer in my bone marrow; and the pathology from the needle biopsy confirm that this is indeed follicular lymphoma (stage 1-2) and not a faster growing Non-Hodgkin Lymphoma.

And that means that the treatment plan will be rituxan and benzamustine (not CHOP)... which is less often (every 28 days instead of every 21), has less side effects, and shouldn't involve my hair falling out. Which is good.

In case it's not obvious, I don't really care about my hair falling out. It'd be at least a little interesting to see what I look like bald. No, it's what my hair falling out would symbolize that troubled me, which is probably why I was more nervous for this appointment than others. And why I love how Dr. LaCasce just came in, said "Hi" and before she could sit down had already said, "It's good news." I know other oncologists follow a similar "get-the-results-out-quick" protocol and whoever taught them that is a genius. But I digress.

For the last year, I've considered myself more unlike than like other cancer patients. Although there are many patients my age, if you go into a cancer center, you'll find that a young 40-something, healthy, relatively fit male is more the exception than the rule. And unlike many patients, although I was diagnosed, I wasn't being  treated.

By undergoing treatment, I'm already edging closer into the category of every other cancer patient; losing my hair would have put me firmly in that group. More to the point, it would have announced my diagnosis to everyone I work with, to all my friends, to all my acquaintances... to anyone who knew of my diagnosis. On the surface that may not seem a big deal to someone who blogs publicly about having cancer. But when I blog, I decide what to say in my posts. I decide what I reveal and how; I provide the context and the timing. I'm in control of the conversation. If I show up at work on one Monday; at a softball game some Wednesday night; at a conference and I'm suddenly bald, I lose control of the conversation.

So hidden in the good news of less disease progression than we might have seen, of less frequent chemo, of less toxic chemo is the chance to maintain just a little control.

And that's good news.

-michael

Gratitude

Midnight. New York City. Lying in a sleeping bag on a cot in the American Museum of Natural History,  staring up at  amorphous images that float across the ceiling panels 150 feet above my head. Next to me, my boys sleep in their sleeping bags, happily exhausted. It was a great moment. A great evening.  And I was grateful for it.

The somewhat fuzzy view of sleeping quarters
 from the top of the stairs.

That's not unusual. I often feel grateful for all the opportunities we have. But there was something different in how I processed this gratitude the other night. I started out thinking as I often do about how lucky we were are to be able to do these things; but I changed that thought. What I was really grateful for wasn't just the opportunity to do events like this. It was for this particular thing. This sleepover at the museum. 

This night. 

This moment.

There's a huge difference -- at least for me. 

I have a friend who I always felt did things - travelled, had adventures, lived life as if he was building a giant list of events that he could check off when he completed them. Been there. Done that. 

It's not that the adventures weren't worth having -- just the opposite, they were cool, and full of fun, but the purpose of the adventure shouldn't be simply to have done it. You can't live a moment with the express intent of creating a memory of it. 

To me, that's the difference between living in the present and living in the future.  And it comes back to gratitude. To say, I'm so grateful that I get to do these things, there's the implicit expectation of future things to come --  for events, moments that I expect will continue. That's laden with problems. It speeds up the moment, rushes it to completion instead of inviting it to linger.  It shifts the focus from the present to the future. If living in the past can fill you with regret and longing, living in the future can only fill you with anxiety and pressure.

If I can let go of the expectations of the future, I can abandon the anxiety that comes with it. I can trust that living in the present will be both its own reward, and the foundation for a good future. 

As I lay on the cot at the museum, I wasn't sleeping, but I wasn't stressed about the lack of sleep. I wasn't doing what I would typically do -- which is think, "I need to get to sleep now so I can get 7 hours of sleep. Okay. Really need to sleep NOW so I get 6 hours of sleep." 

Instead, as I listened to the sounds of the room, I focused on how cool this particular moment was. I let go of the anxiety of getting enough sleep. If I was awake all night, I thought, so what. I would get to spend the entire night lying under a giant suspended whale, and staring at the cool shapes transform themselves, all the while knowing that my boys were happily sleeping while having "the best birthday ever." 

It was a good moment.  A great moment. And that was more than enough.

-michael

Subscribe by Email

I finally added a little gadget at right that lets you subscribe to this blog not through Google Reader or  Google Friends or anything... just by email.

So if you want to know when the latest brilliant post is published, just enter your email. Fair warning: you'll also find out when the latest not-brilliant post is published - it doesn't distinguish between the two.

Who knows, I might even spend a little time this vacation working on the design.

--michael

From Biopsy to Baseball

That wasn't so bad.

I had my first bone marrow biopsy today and it was pretty much as advertised. 5-10 minutes of prep/consent; 15 minutes of procedure. Probably better than having a cavity filled, if you ask me. So now in the last week, I've contributed my data (lymph node tissue, bone marrow, bone -- they take some of that too in a biopsy) and it's up to pathology.

I meet with Dr. LaCasce next week and figure out the plan. Whatever it is, I know I'm in good hands at Dana-Farber. One of the things I like beyond the fact that everyone is always smiling, personable, warm and just downright friendly, is that everyone seems up to speed on my case and care. 

Remember the Brigham surgeon who made the faux pas of saying, "So, I understand your lymphoma's come back"?  Not Zach, the Dana-Farber PA who saw me for all of 20 minutes. He knew my diagnosis, why I was there, that it was my first bone marrow biopsy, and probably a lot more.  

So more to come next week. In the meantime, I've got a softball game to play. 

-michael

How Good Is Optimism?

An interesting post and link to a NY Times article from a Lymphoma blogger  And then another interesting read from an article on the same subject from last year.

Both of them discuss the potential and the pitfalls of too much optimistic thinking -- and also of too much pessimism. I'd suggest the old adage applies: Everything in Moderation. Blind, unfettered optimism can be as harmful as no optimism, I would guess.

Cognitive Dissonance

Among the defining characteristics of Sagittarius's, if you believe in that sort of stuff, is an almost unflinching loyalty and honesty. In that respect, I'm astrologically accurate. 

The honesty, well, hopefully that's reflected in this blog. The loyalty manifests itself in my reaction to my Dana-Farber team. I feel protective, proud and proprietary about them; I celebrate their successes when I see they are talking at a conference or authoring a paper. And my ear is attuned to the slightest slight I might hear. Some of this is a natural cognitive reaction -- what consumer behaviors call postpurchase cognitive dissonance theory. That theory, if I remember my marketing theory classes, says that when you make a purchase, let's say a car, you unconsciously seek out positive information about the car you bought and avoid negative information that would create dissonance. You've created a world view in your head that the car you bought was the right choice and your mind looks to reaffirm your choice - to create consonance and avoid dissonance.

Now, the downside to cognitive dissonance is that the more important the decision, the more powerful the effect, and therefore, the harder it is to recognize when you've made a bad decision. If you've spent $500 for a lemon of a car, that's easier to come to grips with than if you spent $50,000 for a luxury lemon. 

And on the scale of important life decisions, choosing an oncologist would seem to sit slightly higher than buying a refrigerator or a car, which means the theory of "postpurchase" dissonance would only apply more. If I'm trusting my cancer care to someone, I'm going to be even more motivated (consciously or unconsciously) to reaffirming that I've made a good choice. And as my care extends from months to years, and I develop a stronger relationship with my team - I can only imagine that the combination of my natural loyalty and cognitive dissonance will make me fiercely defensive of my team. 

I'll need to rely on family and friends to keep me rationally honest and objective. But in the meantime, don't be saying anything bad about Dr. LaCasce.

A Long Week

It's been a long week. Monday's appointment seems like weeks ago. Time has a funny way of contorting itself.  It seems the more you do or think during a period of time,  the longer it stretches it out, as if your mind has a hard time believing that all of that activity could have happened in the span of time that it did.

And my mind's been in overdrive this week. Decision to treat on Monday. Process that news on Tuesday and Wednesday. Readjust the plan in my head on Thursday. Needle biopsy on Friday. Throw in a busy week of work and an eight-year-old-birthday, and that's a lot to fit in a short period of time.

Now we wait for the pathology to figure out what the plan really is. In the meantime, I have a bone marrow biopsy at Dana-Farber on Wednesday afternoon. I'm less worried about the procedure itself than whether it'll stop me from playing softball that night.

I've now had two needle biopsies, an ultrasound guided one on my neck with local anesthesia and a CT-guided one with an IV sedative on my abdomen. The ultrasound one was a bit uncomfortable, but a lot quicker -- about two hours all told. The CT one was much more comfortable, but an interminable wait. Three plus hours in the prep room watching the Olympics before the procedure. Add an hour for the procedure and an hour for recovery and it was a long day. It would have been less painful but I couldn't eat or drink anything prior to the procedure -- for the whole day. Since I arrived at work at 6:30 that morning, by 2:30 pm when they wheeled me in, I was starving and severely decaffeinated. 

That didn't bode well for the  doctor who came over to explain the procedure and get my formal consent. (Dana-Farber partners with Brigham and Women's Hospital for their adult oncology so while most of my appointments are at Dana-Farber, any radiology, surgery, pathology, are done at the Brigham.) I might have snapped a bit at him when he said, "So, I understand that you're here because your Lymphoma has come back." 

No, I said, with not a little disdain in my voice. It hasn't come back. I haven't been treated for it yet. And then I thought, but didn't say, "read the damn history or ask me for it."

He asked me. I explained. Much better.

He also said, "You look anxious." To which I said, "No, I'm not." Hungry and tired, perhaps, so stop patronizing me and let's get on with this, I thought.  Because I really wasn't anxious. I wasn't looking forward to be poked in the abdomen, (or belly as he kept referring to it when he spoke to me. Really? Belly? I may not have studied anatomy, but I've got a Masters in Literature. I can handle the big words, like "abdomen.") but I wasn't worried about it. I just wanted some water and a sandwich -- which I finally got at about 4:15, fifteen minutes before they released me.

-michael

p.s. On an only marginally related note, as I continue in my efforts to eat healthy, our vegetable garden will certainly help. Today's bountiful harvest included cukes and tomatoes that made their way onto our dinner plate, and some chili and serrano peppers, which will make their way into fresh salsa.

Fresh tomatoes 

Cucumbers from the garden

Serrano (small) and chili peppers (long)
from the garden

Postscript

For most of yesterday I was feeling crappy, to tell the truth. I've had a kink in my neck (not related to cancer, but to reading my iPad on the train) and was trying to process the news from my Dana-Farber visit.  

But what was really bugging me was that I was having the hardest time writing about the visit. I was blocked. I got the basics down but couldn't get any further.  

Once I actually got it down on paper (or the digital equivalent), I felt instantly, noticeably lighter. It's as if by writing it, I'm committing to a plan -- as if the talking about the plan is part of the actual plan itself. 

-michael