Thursday, December 20, 2012

Terrorism and Cancer

I've been toying with the idea for this post all week. The idea came to me as I was leaving the T station on Monday. Usually I write a post in the morning and publish it that day. For some reason, I've been hesitant with this one. But here it is nonetheless...

It's easy to say we live in a dangerous world.

From there, it's almost as easy to say that we need to remove all those dangers from our lives as if we're childproofing our house from newly ambulatory infants; that we need to refrain from activities (air travel, movies, shopping malls, school) that create that danger. That, ultimately, would leave us living in a bubble, if we could invent one, or under our bed (although as fans of Calvin and Hobbes will remember, that's where the monsters live at night.)

Last week's act of terror in Newtown made me think of the daily risks I go through. Here's my typical routine. I drive in the dark and often weather-impaired conditions along a five-mile stretch of road populated with makeshift memorials at the site of past accidents. That leads me to the highway into Providence. (There are somewhere in the neighborhood of 40,000 motor vehicle deaths each year in the U.S.)

I get on an Amtrak train headed into Boston, walking past the Amtrak police, the Providence police, and often a bomb-sniffing dog. Amtrak trains have not been the scene of any terrorist actions to date, but derailments aren't foreign to US train travel.

Once in Boston, I either bike through Boston streets (enough said) or now that it's cold, take the T (the Boston subway) which locks a couple hundred people inside a moving electrified trolley. As you enter or leave the crowded stations, emergency evacuation signs are among the largest ads you see. More often, I'm most concerned about the smells and germs circulating around me and less about derailments or acts of terror.

I try not to breathe too much.

Then I walk a half-mile to work, where, in an unsecured building, I spend nine or so hours, with a couple hundred people, including researchers, IT folks and fellow communicators. There are some great people in all those departments, and a lot of folks who I don't know -- and at least two of those professions attract at least a few individuals who seem to prefer technology and science to people. 

I then turn around and repeat the process to go home.

If I spent too much time thinking about the risks, I'd calculate them to be a lot higher than they really are and I might never get out of bed.

So what's that got to do with cancer?

There's a song by one of my favorite artists. It's called "(Everything Will Give You) Cancer" by Joe Jackson (the video is below as well). The chorus goes like this: Everything. Everything will give you cancer. There's no cure. There's no answer. Everything will give you cancer. 
It's an old, sarcastic little song, maybe 25 years old and he's got a point. If you started making a list of things that might be linked to some forms of cancer, you'd have a list that unfolded over many pages -- and included on it, would be things like, alcohol, a high-carb diet, tobacco, and oh, the sun. 

For 48 years, I carried on mostly oblivious to any risky behavior I engaged in. Did any of that fuel my cancer? Who knows? Did all those delicious cold cuts I ate - piled high, Dagwood style on fresh-baked Italian bread lay the seeds of my lymphoma?  Did shots of Jack Daniels start the process of the DNA mutations that led to my swollen lymph nodes twenty years later? Doubtful. I have a hard time believing that anything I did was in excess enough to be related.

Sure, I'm more careful about what I eat and drink these days. I try to eat more fruits and vegetables, more whole grains, less processed foods, less sugar-fueled snacks. But that doesn't mean I won't have a drink with friends and not  think twice about whether that's dangerous. If I stressed over every bite I ate; worried about each time I had a cookie or a bowl of ice cream, I'd probably subsist on bread and water. There's some interesting research that is examining chemo brain - the real and quantifiable changes in brain activity that some patients experience -- and its relation not to the chemo drugs themselves, but to the stress of the diagnosis.     

As with the threat of terrorism, the threat of cancer can hang over our head like a weighty, oppressive cloud, forcing us into a fetal position. Or we can accept the risk inherent in living, take a deep breath and process the risk as awareness, even alertness, but not anxiety. 

The tragedy in Connecticut filled me with sadness. The more I think about it -- its proximity in so many ways to the life we lead in Barrington -- the easier it becomes to overflow with that sadness. The same can be true with my cancer diagnosis. 

I read a story about talking to your kids about the tragedy which had this bit of advice: This may have been an act of evil but it's one event in an otherwise good world. It's what I believe. If I'm going to continue my optimistic  view of the world, it's what I have to believe.


 Here's one of a few options for (Everything Will Give you) Cancer on YouTube.

Friday, December 14, 2012

Random Observations, December 2012

It's time to fall back on the blog chestnut: random thoughts and observations -- which means of course that I'm just not finding a thread to tie together my thoughts. I could blame it on the chemo but as it's Thursday and I'm as clear-headed as I've been in five days, that's a weak excuse. So we'll just dispense with the rationale and get into the observations.

I got a lot of positive response from the news that my chemo was working. That shouldn't be surprising. But the level of relief (measured in the digital lexicon of exclamation points, caps and emoticons) made me to do a mental double-take. I suppose that the option of the treatment not being effective was something I entertained somewhere deep in my consciousness; the chances of that idea escaping the stranglehold that was suppressing it were pretty slim. Whether optimism or naivete, I always assumed that the chemo would work. The reality, of course, is that high success rates are defined by the rare failure. And just to illustrate the point, when I was getting chemo, a young woman (young enough that she had a one-year-old at home) was getting news that her treatment wasn't having the effect they wanted. 

Hello neighbors, I have cancer. As more people know about my diagnosis and treatment, more people will know about my diagnosis and treatment. At a recent neighborhood gathering, one of my neighbors asked Stacy how I was doing. The rest of the group then asked for the missing information. I don't think it fazed Stacy; it certainly didn't faze me -- which is to say we've come a long way. 

I ran across this article about a British researcher and former cancer patient. Her tweet upon receiving her PhD had a familiar refrain to it. It started with a little flavor of a cancer center ad campaign ("Dear Cancer") and ended with a phrase that I've invoked at times -- "Take that."

Exercise is key. These past two cycles, I've made it a point, even on my most fatigued days to at least walk around the block, do a set of push-ups, walk to the bus stop and collect Noah, or some combination of the three. If this past post-chemo is any experience, it certainly helps. 

Salt lick anyone? One of my most insatiable cravings in the days after chemo is salty foods. I'm not sure why - a product of the fluid retention? The drugs? It just screws up my taste buds and many things seem unappealing. Ask Stacy about my aversion to juiced fruits and vegetables. Suleika Jaouad writes about the more intense effects chemo and treatment have had on her eating experience in the NY Times blog, Life Interrupted. (Thanks Andrew at My Lymphoma Journey, for highlighting the post) Once  again, I count myself lucky.

This seems a bit obvious but I'll say it anyway: Chemo is disruptive. For two days of actual chemo, there's a familiarity to the routine of bloodwork, office visits, trips to the dining pavilion, infusion, retrieving the car. We even squeeze in a lunch or dinner without the kids and this cycle, a trip to Ikea. But come Saturday, we descend into a holding pattern as we wait for the storm to arrive. The house is boarded up; we've stocked up on batteries and water and we go about our business as we watch the clouds move ominously closer. As much as we prepare, it's still a disruptive storm. Once it's passed, we clean up from its effects and celebrate the clear, blue sky -- but catch a glimpse of the long-range forecast and know that there's another storm brewing. Only two more storms. 

And staying with the metaphor, it's a persistent storm. Even after the skies have cleared, the occasional cloud or ill wind will blow by in week two, even week three, reminding me of its presence with a passing nausea or wave of fatigue. 

The movies are filled with images of sick patients, who despite how crappy they feel, muster up the strength to be particularly warm, caring, and patient with everyone around them. Remember, most movies are works of fiction. The fatigue seems to sap any lingering threads of patience, particularly with the under 12 age group. 

I've been starting to think about what happens after February. What happens when the chemo is done?  What happens if we make no more progress? What happens if we do make more progress? Do we watch and wait again every three months? Do we live on the edge of our seat waiting for lymphoma to return? Do we get to that place where hours and even days go by where cancer, my cancer is not the dominant thought in my head? And if that's the case: what do I write about? 

Perhaps the difference between now and a year ago is that I may be thinking (and writing) these thoughts, but for the most part, I'm not staying awake at night worrying about them. I'm learning, day by day, that I can't control the future - no matter how much anxiety I harness to try.

And finally, to leave on a more upbeat thought. It's Friday now (though the post started on yesterday morning's commute) one week post chemo and there is nothing like the weekend one week out. It's a blank slate of possibilities and even the mundane events (transporting kids to soccer practice, shopping, housecleaning) present themselves as unwrapped gifts waiting to be opened. 

Happy, happy weekend all.

Monday, December 10, 2012

It's Monday and I'm Blogging

This is a good sign. 

My post-chemo recovery has usually followed a consistent pattern: fine on Friday, a little tired Saturday, then a sluggish Sunday followed by still slower Monday. It's usually not til Tuesday that I can muster up the eyeball energy to look at a computer screen. (See last month's post for reference.) But today, I've even been able to  get a little work done -- nothing fancy, but just some email that required a slight dose of brain power. 

Good thing it didn't require much more, because I've been sitting here trying to string two solid paragraphs together and this is about as far as I'm getting. Ah well. I'm optimistic that tomorrow will bring a somewhat normal day with maybe the need for a few more breaks than normal.

Four rounds done. Two to go.


Thursday, December 6, 2012

It's Working

I wasn't quite sure what to expect from today. Three cycles of chemo and I could feel the effects in ways pleasant and not so pleasant (nausea, fatigue, fuzziness) . But were the physical manifestations of the drugs merely unwelcome side effects or evidence of effectiveness.  In other words, was the chemo working?

After CT scans -- my first since beginning treatment -- and regular bloodwork this morning, I'm happy to report that the answer is yes. It's working.

The swollen lymph nodes in my neck are no longer palpable. The larger ones in my abdomen have shown "marked improvement." A few new, "subcentimeter" nodes were evident but other areas were "unremarkable." 

Or in non-radiology speak, the scans look "great" according to Dr. L -- and in Dr. L we trust. I don't say that lightly. Trusting your oncologist -- your entire care team -- is an important part of care. The cancer journey can be one full of serpentine roads, forks in the path, even the metaphorical red light. And as we motor along that journey, at times we're just the passenger in a vehicle driven by oncologists, radiologists, pathologists, nurses, and other cancer professionals who travel this road regularly. 

It's like traveling along in a foreign country where you don't speak the language. You see the road signs and the words look somewhat familiar, but you're not sure if the left turn ahead will take you to a restaurant or a rest room. So you ride along, putting the trust in your navigator that when they say, I'm going to take a left up here to take you a restaurant, ok?  You have confidence not only that the road will take you there, but also that the restaurant is where you want to go. You trust their decision, which is really your decision.

Last week, I wrote that I wasn't sure if I'd preset my expectations before the scans. I didn't. I decided to calibrate my expectations based on what I learned,  even though that's a little bit like answering a Jeopardy clue after you find out the right answer. The illogical part of me thought that maybe all the lymph nodes would miraculously melt away. But if that were the case, then we'd only be doing three rounds of chemo, not six. 

So here we sit in the infusion chair, beginning round 4 with the knowledge that halfway through the treatment, the drugs are working.

Not a bad day-after birthday present.


Tuesday, December 4, 2012

The Interwebs

The two scariest words in the medical lexicon are: The Internet.

Rest assured that whether you have a paper cut or a softball-sized mass visibly growing on the side of your head, some web site, some blog, somebody, somewhere on the Internet will confirm that your symptom could be a sure sign of some fatal malady. When I was first diagnosed, I surfed around a bit and decided that I'd limit my information gathering  to sites and people who I fully trusted.

Then last Thursday, my knee started hurting. 

Two years ago, I would have first dismissed this as a sure sign of an aging knee,  one-too-many surgeries, and perhaps, one-too-many marathons. I would have complained about it for a couple of days; obsessed about how I could have hurt it and anxiously wonder whether I re-tore my ACL. Then I would have Googled "knee pain" and found all kinds of interesting causes - arthritis, bursitis, tendonitis, cancer.  I would have thought it was cancer. I would have scheduled an appointment with my orthopedic surgeon -- only to cancel it two days later when my knee had healed itself with a little ibuprofren.

This time, I followed a similar mental trajectory. After wondering what I did to it, I checked my  chemotherapy information sheets for possible side effects. The Bendamustine sheet had nothing to report about knee pain. But here's what it said for the Rituxan sheet, under the heading of "Things that may occur a Few Days or Weeks Later"

1. Mild Nausea may occur.
2. Some patients may feel tired, also known as fatigue. . . Talk with your doctor or nurse. 
3. Rituximab may cause Tumor Lysis Syndrome (TLS). If you start to feel joint pain, swelling or stiffness, you should contact your doctor.

Oh, let's see. My knee is a joint. It's painful, swollen and stiff. 

So what the hell is Tumor Lysis Syndrome? Let's Google it. I didn't have to get beyond the descriptions on the results page to encounter this: "Tumor Lysis Syndrome is a life-threatening oncologic emergency."

I can deal with nausea and fatigue but would prefer to stay away from life-threatening oncologic emergencies. 

Luckily, I've since found out that TLS almost always occurs with large volume, aggressive lymphoma (not mine) with the first round of chemo (also not mine). This I found out from Dr. L, who responded to my Friday night email in exactly two minutes. (You ever notice how health  issues never present themselves in the light of day.)

Her recommendation was that I take ibuprofren.  

Two days later and my knee is back to normal -- life-threatening oncologic emergency averted --  and I'm back to my relying only on my trusted sources.