Tuesday, April 30, 2013

So, How are You?

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:

"I'm doing well. Thanks for asking."


Sunday, April 21, 2013


Thinking Out Loud's been a bit quiet this last week. It's not as if there wasn't much to think about, or enough time to write about them -- I only worked Wednesday and Thursday this week but I was a weird emotional distance from the Boston Marathon Bombing. Fortunately, I wasn't close enough to have the traumatic emotional response that many have; I was three years removed from that. Nor was I far enough away to be completely insulated from what transpired -- I don't think anybody was.

Instead in the initial hours and days after the bombing, I seemed to occupy an emotional middle ground. I vividly remember 9/11 and how I felt then and this event was closer to me than that; yet I still felt slightly detached from the rawness that many people felt.

I was talking (and emailing) with a couple of card carrying members of the Cancer Club about this, and the sense of guilt that accompanied that partial detachment. It's not that any of us viewed the events with apathy or anything close to it, but the same cancer cocoon that protects us from too much negative information coming in, perhaps prevents too much emotion from spilling out, even in the most traumatic non-cancer events. It's as if there are two worlds -- our cancer world and the other world, and that other world is sometimes viewed through a haze from our world looking out.

On Saturday, I thought it right
 to wear my Dana-Farber
Marathon Challenge gear from
2010.  Not only Boston Strong
but also Dana-Farber Strong.
And then I went for a long run today.

I've been running a lot this week, in fact -- today was my 7th run in 9 days and the first time I've tackled my favorite 6-mile loop in probably 3 years. As I settled into my pace after the first mile, my mind settled down too, and I thought of how many of the victims of the attack were runners (either marathoners or casual runners), and how many months, or years, it might be before they can throw on a pair of running shoes and go out for a run on a beautiful spring day.

And I thought about an acquaintance of mine who contracted Lyme Disease and can no longer work.

And I thought of all the cancer patients who were recovering from surgery, or undergoing chemo, or stem cell transplants, or radiation, or all of the above.

A bit of the scenery on my favorite in-town run.
Photo by Mary Motte, from the Barrington
Virtual Art Gallery
Cancer comes with an ample amount of guilt, served up in many flavors. From guilt that what you did somehow caused your cancer to karmic guilt that wonders what you did to amass such dark karma, to guilt that your cancer is "easy" compared to other cancer patients to the more predictable guilt over being a burden to friends and families.

It's one of the perverse ironies about the mind that at a time when we should be most open to receiving, we often feel guilty about doing just that.

But guilt comes not only in flavors, but also in depths. Sometimes you can peel away those layers of guilt, and when you do, you're left at your emotional core...  with perspective.


p.s. Adding a link about my fellow DFMC runners, http://www.necn.com/04/18/13/Runners-gather-in-Bostons-Back-Bay/landing.html?blockID=838291

Monday, April 15, 2013

If It Weren't For Cancer . . .

This post was going to start like this: Oh for god's sake, not another post about running. I formulated some ideas for this post as I was out enjoying a beautiful spring run on a day off. Then before I even made it inside my house, Stacy told me the news from Boston.

I don't know what I can add to the discussion that will consume us. There will be grief, sadness, anger, frustration. There will be relief, joy, appreciation and gratitude. Many will feel some of those emotions. Some will feel all of them. It seems a natural human reaction to tragedy to gauge our proximity to the event. We measure the degrees that separate us from disaster.

Three years ago, when cancer was something I witnessed and not experienced, I finished my Boston Marathon in an official time of 4:11. The first explosion went off at between 4:09 and 4:10 and the second one shortly thereafter. But for three years, I would have been running down Boylston Street in smoke.

I had though of volunteering for this year's race -- to thank all the Dana-Farber runners for their dedication and fundraising. I was going to ask to be at the finish line to help escort runners from the finish line back to the Dana-Farber Marathon Challenge headquarters. In the end, my boys are off this week and I wanted to spend some time with them... and not have to deal with the crazy traffic that usually ensues on Marathon Day. So instead of volunteering, or even working today, I took a vacation day and spent it suburban Rhode Island.

Crazy indeed.

Friends and family who know the Dana-Farber connection to the Marathon (and my connection to running and Dana-Farber) have reached out to me and Stacy to make sure I'm okay. When one found out I was fine, she commented, "You must have a guardian angel watching over you."
"Yes," we replied. "It's called cancer."

If it weren't for cancer -- for six months of chemo, would I have been running the marathon today? If it weren't for cancer, would I have turned a milestone birthday (50, last December) into a reason to run? I've done that before. If it weren't for cancer, would I have been as concerned about taking time off to drive my kids to soccer camps and dentist appointments and ice cream shops on their school vacation week.

Who knows? It's likely that my knees and my wish to remain married would have kept me from another marathon. But it's hard to think of what decisions I would have made if I didn't have cancer. It's hard to think of how I even thought before I had cancer. And, in some respects, it's pointless to try.

There are thousands of decisions over the course of my life that took me to Dana-Farber five years ago. And who knows whether any decisions I made in my life had any affect on my developing cancer. It's likely.

I'd like to think that there is some kind of positive life force -- karma, God, human conscience, whatever -- that balances things out. But at times like this, it's hard to see how things balance out. It's hard not to think that it -- all of it -- is anything but serendipity. A string of connecting decisions that map out our fate from day to day, from year to year, from cancer diagnosis to safety.

Friday, April 12, 2013

The Capacity for Joy

I was going to write about fear and guilt but I'll get back to that topic in a later post. Instead I want to talk about the flip side of that coin:  joy. 

One of the things that cancer -- or any serious disease -- threatens to steal is not just happiness, but the capacity for joy. Mired in the day-to-day struggle of symptom or side-effect management, the disease becomes not just the oft-cited "new normal" but it becomes the new routine. Instead of a daily dose of happiness, we look for a serving of "am I okay today?" 

At best, our answer is yes. At worst, it's answered by uncertainty, ambiguity, and a day of obsession (or worse, Internet searches.)

In the process, the constant thinking about the question adds layers of clouds to your emotional weather that become harder to penetrate.The little things that once gave us joy can't make it through and even the larger bursts of sunshine are muted by the time they reach us.

That's the danger. But it doesn't have to be the reality. While the events that occupy our days and lives help shape how we feel, it's often true that the emotion you find is the one you're looking for. Looking for an argument? I'm sure you'll find one in pretty short order. Want to get mad? Good bet, you'll be able to find something in your day to sate that appetite for anger. 

I often look back at moments in my day and wonder why I deprived myself of joy. Was that offense really so egregious? Where was the harm? Why instead of laughing it off, did I pile on another layer? 

If you want moments of happiness to visit, then you have to have the capacity for joy. You have to be able to put aside the worries and obsessions, and decide that you're going to receive the joy that surrounds you. It becomes self-fulfilling - clouds beget more clouds; sunshine produces more sunshine.

* * * * *
There's a great little article that's circulating around social media and blogs from the LA Times. It's somewhat on topic here, but probably more related to item # 6 in my list of 10 Things I've Learned, and the impact that cancer has on those near the center of the storm. A short, but well-worth it read.


Wednesday, April 10, 2013

Spam, Spam, Spam

A quick post to say that the spambots have been finding this little blog with increasing frequency. I've been getting about 10 or so anonymous spam comments on a daily basis so I've had to enable word verification for comments going forward. A pain -- but a necessary evil to avoid spam comments which are, at best, annoying and at worst, dangerous.

And since we're talking spam, a little Python spam for you.

Hope to have a more thoughtful post for the ride home.


Thursday, April 4, 2013

That Cretin Creatinine - A Detective Story

Let's start with the good news: it's very unlikely my kidneys are failing.

Of course, I never really thought I had kidney failure... except maybe for a brief couple of hours between my first creatinine test and my second. Have I mentioned that the Internet is a scary place for medical information?

The problem is, nowhere on all the wonderful places where one might surf does one find a site that says, "It's probably nothing. Go have a glass of wine and calm down." That's what your doctor says. Except the last part. He usually says, "It's probably nothing.... but let's run a gajillion tests just to rule out all the somethings that it probably isn't"

Maybe some context would be helpful here.

About two years ago, I was in the midst of following up on a couple things that I had brought to the attention of my doctor. The first one, which was probably nothing, was a swollen lymph node that was eventually diagnosed as follicular lymphoma. The second was some swelling in my lower right leg. That was probably nothing, too, but my track record with nothing wasn't that impressive. So after blood work - normal and an ultrasound to rule out a blood clot -- ruled out, we were left with essentially nothing.

My leg was never really bothering me, but it was just kind of there, a little swollen, and noticeable. Sort of like my lymph node. Two years later and my lymph nod is no longer "swollen" -- thank you rituxan and chemo, but here's my leg returning to its less-than-normal status.

This time round, I have a few more variables in the mix.  For one, I've been doing the whole standing desk thing for three months. Not eight hours a day, but enough hours to probably have an impact. And then there's the chemo.

I reached out to Dr. L who, checked my recent scans and also noted that I had mentioned this problem two years ago when I first saw her. She didn't suspect it was lymphoma related and while I would have preferred to see her than my primary care physician, for a variety of reasons including proximity. I set up an appointment with my PCP.

I have to say up front that I like my PCP well enough. We're not hanging out on the links together, but he's a nice enough guy, thorough and smart. He is, after all, the one that had me do tests on that pesky swollen lymph node that was probably nothing. The problem is, after two years of care at Dana-Farber, the bar is set pretty high. So after checking in with a not un-friendly desk person, I waited.

Eventually a nurse came out and asked if I had filled out any paperwork? No, I hadn't. She looked confused. She came back with paperwork -- a health questionnaire that I started to fill out. She reappeared and asked if I was here for a physical. Um, no, and I started to explain. OH, she says, that's why I didn't have paperwork. She had just assumed that because I was being seen in a time slot that's usually reserved for physicals that this must be why I'm here. Um, no.

If you're wondering, yes, it is the same nurse who believes that "they" have already discovered a cure for cancer but are keeping it to themselves. After we have that awkward conversation, nurse leads to doctor, doctor leads to lab tests (and yes, another ultrasound). Lab tests lead to slightly elevated levels of creatinine.

Huh? About 10 minutes after I saw the tests online, I get a call from a nurse saying that my PCP wants to run the test again. Okay. In the meantime, it's time for me to figure out what the hell creatinine is. And why mine is slightly elevated. I do some reading. I convince myself that I am beginning to have kidney failure, even though my kidneys feel just fine. I do some more reading, trying to find why it might be elevated. I'm now certain that my kidneys are failing... or I have pre-eclampsia, which only applies to pregnant women. I read some more. I know that "Creatinine is a breakdown product of creatine, which is an important part of muscle" but I haven't started any giant muscle building program. I finally hit upon this nugget: among the things that can elevate creatinine levels are strenuous exercise, high levels of red meat, caffeine.

My bloodwork was done on Monday around 3 pm. What happened in the 48 hours prior? Well, ran about 3.5 miles at 6 pm on Saturday. Ran about 5 miles at 11 am Sunday. Had leftover brisket (mmmm) for lunch on Sunday and Monday. Oh, and I didn't sleep well on Sunday so had an extra cup of coffee on Monday around noon. Strenuous exercise. Red meat. Caffeine. My kidneys visibly relaxed.

When they retested me on Wednesday morning, just to be safe, I had them prick the other arm. Wednesday afternoon, I got the results: as I suspected, creatinine levels were back to normal.

I celebrated with a nice brisk run this morning (after my coffee, of course). And resigned myself to the fact that my veins, like their owner, are just older and more tired than they used to be.

Monday, April 1, 2013

Conspiracy Theories and Cancer

Stop me if you've heard this one before: Cancer is cured. It has been for a long time. But the [fill in the blank] are keeping the cure a secret because they're making so much money treating cancer patients.

That's a theory that's been going around for I don't know how many years. Usually, the alleged conspirators in this plot are the pharmaceutical companies who don't want to let in on the cure because it would eat into their profits. They're also experimenting on people. And, by the way, don't eat the Soylent Green. See, I do love science fiction, but there's more than just a space separating science from fiction.

There's so much crazy out there that I expect to hear conspiracy theories from everyone.. about everything. I just didn't expect to hear the cancer conspiracy theory from a nurse. Here's how it went down.

I was visiting my primary care physician and as I sat in the exam room, I saw this magazine:

As an editor, this sensationalist headline bugs the crap out of me. Granted, I've never had to compete on the newsstand like Time does, but the idea that a magazine journalist is going to reveal to the world how to cure cancer is absurd, misleading, insulting, and, to all the people looking for answers and hope, cruel. So I was about to engage my nurse on the subject.

Me: "Oh, I see you have the Time magazine that's gotten a bit of attention."

Nurse: "Oh yeah, that. Well, they found the cure a long time ago."

Me (doing my best Scooby Doo): "Huh?"

Nurse: "Yeah, I heard that years ago at Dana-Farber, they..."

Me: "You know I work at Dana-Farber?"

Nurse: "Oh. Well, didn't they fire a, um, not a doctor. What do they call them?"

Me: "A researcher?"

Nurse: "Yeah. They fired him because..."

I'll just stop the conversation there... NOT because she stopped. Oh no, she continued. She continued, even after I added that I'm not just a Dana-Farber employee, but also a CANCER PATIENT! She claimed that Dana-Farber didn't want to cure cancer because they made so much money treating cancer patients. Dana-Farber. A non-profit. That has curing cancer as part of its mission. Now, I'm not naive enough to think that just because you attach a non-profit label to your organization, you guarantee goodness. But I've seen the dedication and commitment of Dana-Farber doctors, nurses, and what do you call them, oh yeah, the researchers up close. And, you know what, they have cured some cancers. And hopefully more cures are on the horizon. But there is no conspiracy.

I wanted to scream at her but I remained polite. She was a nurse and she had to take my vitals. Plus she probably had access to needles and other sharp things.

Look, everyone's entitled to their opinion - crazy as it may sound. But if you're going to be a nurse, shouldn't you have the trust and faith in your fellow healthcare professionals? Shouldn't you at least vet some of your crazy theories before your launch them on your patients? Or at least, check your patient's chart before you open your mouth.