The Beginning of a Plan

This blog has been more of a spot for thinking than updating. But having spent yesterday at Dana-Farber for my six-month scan and bloodwork, an update seems in order. 

Six months ago, Dr. LaCasce had suggested that we look at a CT scan around this time to see how the lymph nodes were growing and probably talk about a treatment plan. And that's exactly what we did.

The scans showed some gradual growth in the size of the affected lymph nodes. They're not huge (huge would be 10 cm and these are still under 3 cm), but they are showing growth. My bloodwork looks  perfectly normal, though, with no evidence there of any lymphoma. But the gradual growth of the affected nodes is driving the decision to start treatment.  

Deep breath. 

What does that mean? 

For starters, it means a few more tests to definitively characterize the disease - including a needle biopsy of a lymph node in the abdomen, and a test of the bone marrow. And that determines how we treat;  both options involve rituxan, but the chemotherapy drug that accompanies the rituxan is different in the two different scenarios, and the timing of delivery differs slightly. Both plans call for infusion two days in a row, either every 21 days for R-CHOP or every 28 days for BR, for 4-6 treatment cycles. The goal with either one would be that I remain working, active -- no restrictions on anything I eat or do, although the R-CHOP tends to have more side effects. If you're interested, a recent article on the two is here:

Then what? 

Then, after we've beaten back those nasty lymph nodes, we wait. For a long time. We hope a really long time. And when it comes back -- and that's the deal with follicular lymphoma, it does come back -- we beat it back again. 

So what does this mean? 

I have mixed feelings about this. As I've said before, it's tough to be sitting around just waiting for the cancer to progress. The natural reaction is: Attack! But now that we're starting to put an attack plan in place, well, it's kind of like getting diagnosed all over again.  New routines. New procedures. New unknowns. And unknown is code for no control, a thread that runs through a cancer diagnosis, or any chronic illness, as a wise person said to me recently. 

Lack of control isn't something with which I deal too well. Remember, this is someone who plotted out what his busy day looked like when he was 7 or 8 years old. Planning is as natural for me as breathing. So take away my ability to plan and it's a little hard to breath at first. I had mapped out in my mind that I'd be watching and waiting for several years; then we'd treat and be in remission for a few years and then we'd do that again. But there's a little roadblock on that map so we'll have to detour around it. Once I figure out the path of that detour, I'm sure I'll map that out, as well.

-michael

Tomorrow

Bright and early tomorrow, we head into Dana-Farber for the quarterly visit. This one entails blood work and CT, along with the visit, which means a few things.


For starters, it means I get to drink lots of fruity contrast agent but nothing else tomorrow morning until the scans are done. (I'm hoping to have at least 15 minutes between last scan and appt to stop at the dining pavilion for coffee!) 

But more importantly, it means that I'll find out how things have progressed since last scan. Three months ago, my blood work looked great and I still feel great. But still...


This visit is also the time when we might begin to talk about a treatment plan. If you were watching me write this, you'd see a large pause after that sentence -- something no amount of punctuation could convey. If you want to know the truth (to quote Holden Caulfield), I'm not sure how I feel about that. In a weird way, the idea of treatment -- of action, of moving from watch and wait to attack, of doing something -- is somewhat reassuring. But along with a treatment plan comes the logistics of scheduling a plan -- even if it's not an intense plan, and by everything I've been told, this wouldn't be intense. It could also mean replacing what is today purely mental side effects with physical side effects 

None of that is trivial, but it pales in comparison with the real complication. Namely, it means I have to fully recognize that I have cancer. It's something I've been gradually accepting over the last year, and particularly over these last three months. Blogging has helped with that, to the point that while I hope we remain in watch and wait mode, if it is time to talk about a treatment plan, I'm about as ready as I'll ever be.


-michael

Lymphoma vs. Cancer

You may have noticed over the course of a year's worth of posting or so that I don't use the word cancer that often -- at least not by itself and not referring to myself. I'll opt for lymphoma instead. Or maybe cancer diagnosis. Or simply diagnosis.

Growing up in the 60s and 70s, the word cancer carried with it such fear and power - it was the Voldemort of its time - the word that shall not be said. It was whispered; it was mouthed but it was often not uttered aloud. And when it was, it was monolithic - it was Cancer. Or even CANCER. Not HER2-positive breast cancer. Not small cell lung cancer. It was just cancer. Said once and not repeated again, for fear of... what? 


In some circles today, it's still avoided. It's the C-word, or it's said in hushed tones over kitchen tables on hot summer nights.


I don't think I say I have follicular lymphoma because of a burning desire to be factually accurate. I just don't like writing the word cancer. Sometimes I'll be typing along at a good clip and then I'll get to the point in the sentence where I should write the word "cancer" and my hands will pause, the cursor will stop moving, and I'll detour around the word. 


There's a funny scene from Monty Python's movie The Life of Brian, where an old man is being stoned to death for uttering the word, "Jehovah." As they detail the specifics of the man's heresy, he continues to say the word. Jumping around and dancing as he says it.


Sometimes that's how I feel about the word cancer: At times we bestow upon it such supreme power that we make the word stronger than it is; at other times, we realize it's just a word and we're a lot stronger than any word. Saying it will not make anything worse. So with me, everyone dance about and kick the dirt. Cancer, cancer, cancer.   


-michael

Guilty Pleasures

I love burgers.  Big, juicy burgers with melted cheese and greasy bacon. Fried chicken too. Pastrami sandwiches.  Ditto french fries, hot fudge sundaes, potato chips, cup cakes. 

I also love broccoli. Fresh fruit of any kind. Vegetables. Salmon. Whole grains. Natural peanut butter. Even tofu.

In short, there are few things I won't eat -- shredded coconut is one of them. Nothing ruins a good piece of cake quicker than some shredded coconut.

What I eat though, has never had any real consequence. I've never had to battle any real weight issues, never had cholesterol or high blood pressure or anything that made me changed my diet. But I've been reading a lot in the last few months about nutrition and cancer. The amount of information out there about food and its relationship to cancer is like an all-you-can-eat buffet on a cruise ship. It's free information and so the temptation to gorge on it can be hard to resist, but like the food itself, there's something to be said for moderation. 

Among the topics floating about are cancer and a plant-based diet, cancer and sugar, cancer and acid/alkaline diets, cancer and phytonutrients and antioxidants, cancer and grilling. 

For the most part, the effects of the information have been positive. I'm certainly more conscious of what I eat. I  count the servings of fruits and veggies I eat and try to hit 5-10 servings each day. I've made an effort in limiting how much sugar I consume. But I'm having a hard time this summer with the grilling ... and the burgers.

As I'm standing by the grill watching the flames kick up from the burger drippings, I can hear the voice of the nutritionist in my head. And as I bite into the juicy burger, on a fresh roll with some crispy lettuce and sweet red tomato, there's just a tiny bit of my brain that wonders if I should be eating this, and a tiny bit of joy drips away. 

In the scheme of things, it's not a big deal, but it's just one little way that cancer can saturate your thoughts.

-michael 

Welcome!

Welcome to everyone who has discovered this from Is My Cancer Different. Thanks for checking out my blog. I should have a more substantive post tonight.
-michael

Diving In

Yesterday, I came across a post on Is My Cancer Different's Facebook page that made me stop and comment. I've been following IMCD on Facebook for a while now but had really engaged with them. As I dug around their FB page, I liked their posts. 

The website is here: but most of the activity takes place on their Facebook page. Their goal is to encourage all patients to consider asking that question: Is my cancer different? And they're right in that every cancer, and more importantly, every cancer patient is different. It's what the good folks at Dana-Farber practice. 

Now IMCD is sponsored by a GE Healthcare company called Clarient, but I don't see anything wrong with that. There's the occasional story that involves GE perhaps, but nothing untoward or unethical.

So why am I sharing this?

Well, in addition to their goal of getting one million shares on their FB page, they have a group of bloggers they call the Founding 100 and I've been admitted to that group. That means they'll be sharing my blog with the 22,000 people who follow them. 

So we might get a few more people listening to me think out loud. But as I said when the blog initially went from private to public, I don't intend to change what I write, or how I write. At the risk of repeating myself. writing for me is therapeutic -- not just for its ability to get things out of my head where they might do more harm than good, but also because I enjoy the act of writing for the blog, in a way that may be hard for non-writers to understand. It's my way of finding fun in an otherwise un-fun situation. I look forward to writing posts, and I look forward to sharing them with a few more people.


 -michael

Finding the Fun

Can you look forward to a doctor's appointment?

How about an oncologist's appointment?

As my appointment with Dr. LeCasce draws near, I'm finding that I'm looking forward to it. And then I'm finding that I feel something close to guilt for looking forward to it. Clearly I think too much.

But it's true that I'm looking forward to the appointment, and I think I know why. Yes, part of is that there's always that part of me that denies that I'm sick -- that part that believes this will all be written off as a lymph node or five run amok. The more rational part of me knows that's not the case -- that I may be leaving with the beginning of a treatment plan (and I'm getting to be okay with that but more on that in a future post). When you get right down to it, though, as an eternal optimist, a doctor's appointment to me is always the opportunity for good news of any kind.

 There's also a more tangible reason for the anticipation. This being a six-month appointment means that along with the blood work comes CT scans. Beyond the added joy of drinking some cherry-flavored beverage and going from 6 am to 10 am without food or, more important, COFFEE, it means that Stacy comes along for the ride -- and that when we're done with appointments, we can have lunch in Boston.

 It may seems little trivial (and if I had the chance to pass on the doctor's appointment and just have lunch with Stacy in Boston, I would gladly do that) but I think that it helps at least in a small way to find ways to have fun, even in trips to the oncologist.  Maybe we'll even take some pictures. -


michael

What is a Survivor?

Suleika Jaquad writes a beautiful blog for the NY Times. In this post, she writes about the survivor label. She is obviously in a very different position than I am, but she covers the subject so well that I'll let her do talking. (I commented on the post but am waiting for it to be moderated and posted in the comments.)
-michael

Ah, Sports

I've often talked about the challenges of watching and waiting, and about how the intervals between thinking about cancer, my cancer, are expanding. At first those spans of time were measured in seconds, then minutes, and, now finally hours.

I'd like to say that it'll get to days, but I have a hard time thinking it will ever happen. Still, there have been times when hours have been passed without a passing thought about cancer, symptoms, or anything of the sort. 

Most often that happens during some kind of sporting event. 

Running, unfortunately doesn't have that same effect, but still plays an important role in my mental health. Running gives me the ability to prove that I'm symptom free; that I'm fine. Sports for me give me such a total focus that I forget just about anything for the hours of the game.

 Last night, I had a softball game. This is an over-40 year-old men's league where 95% of the players know what they're doing, play well and hit well. It requires some level of concentration - particularly when you're playing in the field. But even in the dugout waiting to hit, my mind is zeroed in on the game - it's not straying out to other fields of thought. 

Last year, my first game was the same day as my biopsy so I could only sit and watch and feel the bandage on my neck. By the second game I had my diagnosis and I followed that by doing something I've never done before (or since) in a softball game -- I hit into a double play, two of them. Both times, step on third, throw to first. Done. I might have been trying to crush the ball. 

This year, things have been different. I'm hitting better, for one. Playing well in the outfield. I know the team more so enjoy hanging out after the game and having a few beers. And best of all, last night, from at least 7:45 till 11 pm when I got home, cancer wasn't even on my mind. 

--michael
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Five Questions Worth Asking

Whenever I've met people who have cancer, I've been at a loss for what to say and what questions to ask.

I realize the irony.

If I had to guess, I would say whatever I said ranged from horrible to not altogether upsetting. So often, I would just say nothing. I would talk about anything and everything else, but not about their cancer, being fully cognizant of the elephant in the room. 

But here's the thing: the elephant's not in the room. At least not for the cancer patient; not all the time. It may have been all that I could think about, but as I've said in this space many times before, to let the topic of conversation be the elephant is to let the disease define the person.

And it doesn't. 

Ever.

So not discussing the topic is always a completely acceptable option. But if you feel compelled by compassion, concern or curiosity to ask questions, (and assuming your friend is open to talking) here are a few good ones to ask. All of them  have been asked of me many times by many friends and family members. I only wish I had been able to think of any of these when I was on the asking side.

• How are you? Seems simple enough. But it's better than: are you okay? Because most cancer survivors if they're in anything but full cure, aren't okay, by definition. They have cancer. Are you okay? asks for a yes or no answer and it's just not simple.
• What type of cancer is it? This beats the alternative that I've heard asked "Is it the good kind of cancer?" There are different types of cancer to be sure -- and all have different outcomes and different prognosis -- and it's important to know what cancer type your friend may be battling. But there is no good kind of cancer.
• How's Stacy? Granted, this only works if you have a significant other named Stacy. But cancer diagnoses place a hugely unfair burden on spouses/significant others; they're often the unforgotten partners who bear the brunt of logistical challenges, not to mention the difficult emotional challenges. It's always good to ask this, particularly if your friend's significant other is named Stacy. If not, improvise.
• Is there anything I can do? 99 times out of 100, the answer will be no. But it lends great support just to ask the question. But be careful, one of these times, someone will say: Yes.
  
• Want to grab a beer?  Or coffee. Or Del's Lemonade. Or fruit smoothie. Boredom is anxiety's playing partner. Getting together would be its own benefit just from its ability to keep people busy and off the information overload online; but a beverage and the company of a friend makes it even more valuable.
  
  

As I said, these questions and many other compassionate questions have been asked of me. Even more numerous have been the messages of support, prayer, good vibes, positive juju, you name it. All of it - every last well-meaning word is appreciatively received.   

-michael

Check Up

Milestones, arbitrary as they may be, are convenient points in time to look back, look forward, look around you. June 30th. That's my milestone and it evenly divides the calendar year, making it an even more opportune time to reflect.

This January, I made some actual New Year's Resolutions for the first time. Among them, I resolved to accept people for who they are, to remember how good my boys are, to keep my anxiety at bay, to keep learning, and to have fun. So, at the halfway point of 2012,in the words of former NYC Mayor Ed Koch, "How am I doing?

For the most part, I think I'm doing pretty well. I find myself being less judgmental (except when surrounded by idiot drivers -- Noah says I shouldn't use that word. He might be right.) and slightly more patient with the boys. (In the interest of full disclosure, Little League coaching season was a little trying at times, at least trying for my patience, but we're in full summer mode now and that helps a lot.)

Returning to Dana-Farber has helped with the learning. I've dove into a lot of new stuff (magazine app development, slideshare, podcasting, blog editing and analytics) and that makes my days fun (certainly more fun than my time at Tri-Moron.) 

As for having fun, well, to quote the alt band Cake, "As soon as you're born, you start dying. So you might as well have a good time." (Admittedly, I've been trying to work a Cake reference in here for some time and when I heard that when I was running the other day -- it's from their song, Sheep Go To Heaven (Goats go to Hell) -- I knew that was it. They're a fun band with sometimes explicit lyrics.)

Keeping anxiety at bay - that's the most challenging resolution from this year's set. I see Dr. LaCasce every 3 months, with CT scans every six months. For the first two cycles, I would anxiously turn the calendar over in my mind, trying to pull the appointment closer and closer. 10 weeks to my next appointment. 9 1/2 weeks left. Now 9.

I wanted to prove that I could make it three months without any progression. And I looked at my next appointment as the next opportunity for someone to tell me that it's a mistake. We screwed up. Go on home.  

I haven't quite resigned myself to the fact that the "we were wrong" news isn't coming but I've settled into my new normal of watch and wait. As my next appointment approaches, time has returned to its fast forward pace. Though I'd be lying to say I have no anxiety. Six months ago, the plan was to see how my bloodwork was in three months, and then scans in six months and maybe talk about treatment plans. Now that talk may be 3 weeks away. And there's some anxiety that goes with that.

I'd been getting pretty comfortable with the thought of treatment as something that may happen someday.  Treatment to me implies a move to the next step, implies disease progression. But it also means we're doing something to attack the disease. And sometimes action -- any action -- seems better than inaction. It's also true that treatment of follicular lymphoma these days doesn't necessarily imply any particular breaking point. Some studies are evaluating the effectiveness of Rituxan (with or without other therpaies) as a "first-line" treatment or as a "maintenance" treatment. 

I like the idea of "maintaining" for a long time -- and I like that people are studying my particular disease. Alhtough I'm not exactly sure what the new fNHL studies mean for me,  that's something about which I will talk to Dr. LaCasce at my next appointment.

My next milestone.  

 --michael