What's A Guy Like Me Doing at A Conference Like This?

A funny thing happened on my way to last blog post. I had been writing it over the course of a couple days and right before I posted it... I hesitated. Then I hit publish.

The post has been somewhat popular, and I'm not that surprised. For one, it was a Top 10 list. But it was also as honest as I've been in my blog and I think that helped. So did  a couple of posts on a Facebook site I hadn't discovered yet, and on one I had.  

The anticipated popularity  is part of why I hesitated. Now that more of you may be reading this, there's more pressure to post with both frequency and quality. It's the frequency that frightens me. When I switched the blog from a private thinking, and perhaps healing place to a more public forum, I resolved not to write any differently, or through any different filters. I didn't -- and still don't -- want to post on some set schedule that pushes me to post when I have nothing to say, or no time to process what I'm writing. Because first and foremost, that's what I'm doing here -- processing things by thinking out loud. Hopefully that process is also helpful to others. That means I might post three times a week sometimes; or, like this week, only once. 

Okay, enough blogging about the blog. Back to our regularly scheduled post. 

* * * * *

Some observations from the Lymphoma Research Foundation's workshop in Needham, Mass. on Saturday. 

The advance billing was: great info; great food. It delivered on that. But it was at least a little odd sitting in a room of 150 or more lymphoma patients (or family members). I've been to many conferences before. I've gone as a reporter, an editor, an exhibitor, a presenter, and just an average old attendee. But this was the first one where I went as a patient.  The room was set up in round tables and as I walked in, there were a bunch of partially filled tables, some with coats thrown over the backs of chairs holding space. I tried to find coats that looked friendly. Really. I was looking for youngish looking coats -- or even older coats that looked like they belonged to youngish people. I partially succeeded. But the oddest part was that as we made small talk about the weather, the traffic, the coffee, the overwhelming question on everyone's mind was:

"What are you in for?"

I'm sure we all wanted to know if the person sitting next to us was patient, or family member, and if patient, what type of Lymphoma patient? And what was their status? And what treatment they had? And what side effects? And a million other things. But we kept it to small talk. At first. Later, after we broke up into smaller groups of different disease types, and then broke for lunch, the ice was already broken. We knew we were all folliculars and we had more opportunity to talk.

Outside the meeting rooms, there were small tables set up for the sponsors. It's one thing to have information from a cancer center (Dana-Farber was there), or from the Mass chapter of the LRF pitching their walk-a-thon. But it felt odd to have drug companies exhibiting at a conference for cancer patients.  I know it's perfectly legitimate. It just felt odd. 

I've said it before and I'll say it again. I get someone possessive about my oncologist. Dr. L presented about the history of lymphoma and in a weird way, I was rooting for her. For what, I don't know. I suppose, I wanted her to be smart, informed, compassionate, articulate. Part of this could be because she represents Dana-Farber, my employer and center of care. But I think the deeper reason is that if she were to present well, answer questions expertly, then it would in some way reinforce the trust that I have in her as my oncologist. She did great. 

So did Dr. Freedman who answered about an hour's worth of questions from patients in the Follicular Lymphoma breakout session. The instructions to all the attendees was to try to keep the questions broad so they would appeal to as many people as possible, it didn't stop some people from using this as a public appointment with Dr. Freedman.

A lot of the discussion was focused on the issue of maintenance therapy. In short, many follicular patients have embarked on a two-year plan of Rituxan treatment once every two months, following successful treatment. There's no evidence that this so-called maintenance therapy improves overall survival, but a study has shown an increased duration of remission. Sounds good, right? Well, I had gone into the conference pretty well set on the idea of not getting maintenance. But on listening to the Q & A, and then having a discussion with my table mate -- a gentleman a little younger than me who was now about halfway through his Rituxan maintenance, I was now leaning the other way. Why not do maintenance?

That was the question I tossed about as I drove up to NH for the remainder of Matthew's soccer tournament. By the time I arrived I was convinced I would do maintenance. So after dinner, I emailed Dr. L with some questions. Shortly later, she replied. And the long and short of it is this: none of the maintenance vs no-maintenance studies involved patients who had been treated with Bendamustine-Rituxan, which is proving to likely be superior to other therapies studied. So the likely benefit of maintenance after B-R s likely to be less pronounced, or non-existent, not because of maintenance's shortcomings, but because of B-R's strengths. So we are back to making a decision based on the Do Something / Feel Healthy decision axis.

Which for me, means I'm back to no maintenance.

--Michael

10 Things I've Learned from Cancer

We are always learning. Sometimes more so than other times.

Nearly two years ago, I was diagnosed with cancer -- follicular Non-Hodgkin Lymphoma (or FL) to be specific. Until then, I thought I knew about cancer - having spent several years working as a director of editorial and creative services at Dana-Farber Cancer Institute in Boston. I met with cancer patients; worked with them closely on some projects; I walked the floors of the clinics; I edited stories about research advances; I was surrounded by cancer.

I knew nothing.

I spent more than a year watching and waiting. I spent six months undergoing a chemotherapy regimen known as BR (bendamustine and rituxan). It was comparatively mild -- both in terms of its side effects and its disruption to my daily life. I worked through it - literally, taking a day or so off each month to manage. I've had friends and colleagues spend two years in treatment; friends deal with surgeries, radiation, the works. And then when that was done, even more. What I had to go through was mild. But cancer's effects are not rated like buffalo wings -- mild, hot, and extra hot. Yes, there are different kinds, and some more serious than others, but any degree of cancer is hot enough. And any diagnosis carries its own challenges.

In March, I had my post-treatment scans, which came with the good news that I am now no longer in treatment. I watch, and I wait for my lymphoma to return, and when it does, we'll deal with it. In the meantime, here's what cancer's taught me.

1. Friends matter. They say it takes a crisis for you to know who your real friends are. I don't know that I believe that. I know who my real friends are; I knew that before I was diagnosed. Some of them were great at expressing their concern; some weren't. The fact that they weren't -- because they made stupid comments or ran away from the problem -- doesn't make them less friends; it just makes them poor at dealing with emotions. Who knows why? Maybe it drudges up bad memories, or bad anxieties, or they just are lousy communicators. All I know is that I know who my friends are and I'm grateful to have them and their support -- well expressed or otherwise.

2. I don't know of any study comparing the outcome of pessimistic patients versus optimistic patients or whether either group makes better treatment decisions. But I have to believe the optimists have a better quality of life. I've had my moments of anger, frustration, sadness, fear, and anxiety. I'm sure I'll have more of them. But they've been short-lived -- not because I figured out the answers, but because I realized that those emotions don't subtract from the problems, they add to them. 

3. I've never been big on prayer in the formal sense of the word. So it used to bother me when people would say: "I'll pray for you."  It doesn't anymore. Pray. Send positive vibes. Do a random act of kindness. Meditate. Run. Whatever. It all helps. I don't know how. I don't know why. But it does.

4. People who practice oncology - nurses, doctors, assistants, technicians, phlebotomists, schedulers, you name it. They are a cut above. The people who practice it on the 8th floor of Dana-Farber? They're a cut above a cut above. They bring a level of compassion, respect, understanding, and (and this can't be understated) knowledge to what they do that can't be measured.All of this gives you a sense of comfort and trust; two companions constantly needed on this journey.

5. Cancer takes its toll, and it's cumulative. It's not just a giant shock to the system on the day of the diagnosis, but a constant pounding of the shore wave after wave. At times, the waves are small, and the sand holds strong; at other times, they crash violently and leave the landscape changed by their effect. It takes time and energy to reclaim the land .

6.  Patients are just the tip of the iceberg. Family, friends, coworkers, caregivers - everyone is affected in ways small and large. For immediate family, it's doubly difficult. They face not only the impact of the disease and its disruption of daily life, but also the burden of emotional support. 

7.  To borrow from Glennon Melton, we can do hard things. We can face diagnosis. We can withstand the anxiety; we can manage the treatment. We may not want to do it. But we can.

8. Everyone's cancer is different. There are lots of male, follicular lymphoma patients out there. But are there many 50-year-old follicular lymphoma patients with the exact level of disease progression, with the same health status, the same mental outlook, the same molecular blueprint as me? No. So you can look at statistics and know that they are comprised of sets of cases that are all unique, even if they share some characteristics.

9. It's easy to find daily examples of cruelty and indifference -- just watch the news, read the paper. I've been amazed over the past two years with people's capacity for kindness and compassion. Not just to me but in the stories I've heard from others who have been admitted into this unfortunate cancer club.

10. Bucket lists are overrated. There are thousands of things I'd like to do in life. I could fill pages alone with just the places I want to go - let alone the events and sites that I'd like to see in those places. And that's not even adding in the geographically agnostic experiences I'd like to experience. But to me, life isn't about creating checklists to check off; to me, it's about experiencing what you have, where you are, and who you're with. That doesn't mean I don't want to see Barcelona vs Real Madrid in Barcelona, shag flies in Fenway Park, or sample Thai food in Thailand. I'd love to do all of those and a  thousand other things -- but I'm as excited to watch Noah pitch in Little League. Life's a journey not a to-do list.

-michael

The More Things Change...

I've had the whole day to write but  it's 7:15 and these are the first words to eke out of my mind. I was going to write about my five-mile run yesterday -- the first time in more than 6 months that I've gotten back up to the five-mile mark. But frankly, this is a cancer blog, not a running blog and I've been covering that ground a lot lately. That said - the run was great and followed it with just shy of 4 miles today. So take that cancer.

It's funny, but about a year ago, I was debating going to the lymphoma conference and wondering why I didn't write more often.

The more things change, the more they remain the same.

Although of course, a lot has changed in a year. In chronological order, in the last 12 months I made this blog public, went from watch and wait to active treatment, turned 50, and made it through six months of chemo.  That qualifies for an eventful year.

But I'm here on the other side of chemo feeling in some ways very similar to how I felt pre-chemo. Feeling fine (knock wood) and watching and waiting. The challenge, to me,  is not to get too hung up on the watching, and spend plenty of time on the waiting. Too much watching can be an obsessive,  anxiety producing pasttime. And not enough waiting means  living in three-month intervals, waiting for the next clean bill of health so I can say 3-months clear, 6-months clear, until what? Until I've made it past the median progression-free survival number? And then what? In the meantime, living from visit to visit tends to speed up life when I'd rather do the opposite.

I've written before about living in the moment, and enjoying those moments as they happen. It's easy to say, but hard to do.

Of course, beyond the treatment, there is one thing different from how I felt a year ago: back then  I decided I didn't feel enough like a cancer patient to go to a lymphoma conference. This year, I'm going. 

-- michael

Processing

Dorothy Parker may have written to have written, but I write to process information.

At least that's one of the reasons. When I started blogging 18 months ago, it was to get the ideas out of my head and onto paper. The ideas, I thought, could do less harm there. I also enjoy the craft of writing - of stringing words and sentences together. Rearranging them so that sentences fit into sentences, into paragraphs, into a seamless, smooth surface. What I discovered along the way of 100 or so posts is that writing is also how I process information. It's how I digest what's been said, and figure out in my brain what it means to me, and how I'll deal with it. Even when what I'm presenting seems straightforward, it's never about reporting information to me; it's always about processing.

Which brings me to Monday night's post. I had the hardest time writing it because it was just information, and it was just information because I didn't know how to process what I heard. It was good news - scans looked great; bloodwork looked great. If we were to do PET/CT which isn't always necessary, we'd likely find No Evidence of Disease. It was good news!  But I was blocked. And the more I was blocked, the less I could process; the less I could process, the more I was blocked.

Dog chase tail. 

Then to confound things, my inability to write - to celebrate through words, to celebrate with this small handful of people who have been my crutch and my support, well that just pissed me off. And then, because I couldn't write about that -- about the fact that I was angry and frustrated that I couldn't use my writing to process it -- well that just made me question whether I should be celebrating. That's just crazy. My inability to write started to affect how I felt.

Dog chase tail.

I wouldn't be the first person to say that as lousy as cancer is, it brings blessings in disguise. A fellow blogger uses that very title in her blog. To me, the blessing has never been about appreciating moments more, I've always been grateful for the life I lead, even if I might be just a bit more aware of the beauty in the mundane these days. To me the two greatest gifts cancer's given me are an ability to do my job better, and a chance to do what I love to do: write.

There are many stories of writers who can trace the seeds of their writing career to their childhood  --to stories written for their elementary school magazine or a teenage writing contest or such. Not me. I had a love and aptitude for numbers as a kid. I was going to be an accountant. Truth. Then somewhere, in college, I think, I started writing. Crappy poems. Amateur short stories. Oddball pieces for fringe magazines and newsletters. But they got me to a point where I was 23 and  sitting by myself on English Beach in Vancouver, B.C., at the end of a day that I don't remember, writing. And  I decided. This is what I should do. 

More than 25 years later, thanks to this blog, I'm writing today more than ever, and like the news I got yesterday, that's a good thing.

--Michael

Good Scans. Good News

Just a short post here to report back that I met with Dr. L to talk about the post-chemo scans and they  looked good.

But for all the good results, this has proven to be an all but impossible post for me to write and I'm not sure why. So rather than labor over this for any more than the 90 minutes that I've been laboring, I'm going to sum up:

• Scans and blood worked liked great.
• Whatever nodes that are visibly larger than normal are under 1 cm and most likely just scar tissue at this point.
• I have the choice of watching and waiting on Rituxan maintenance therapy (1 day every two months for two years). While some studies point toward some remission benefits from the Rituxan maintenance strategy, those studies didn't look at patients who had come off a BR (bendamustine-rituxan) regimen as I did, but rather at those coming off R-CHOP. And even in those studies, there wasn't necessarily an overall survival benefit.
• For me, maintenance therapy may give some sense of empowerment in that you might feel like you're actively attacking the cancer, it also to me is an acknowledgement that you're still sick, which, if you haven't guessed, means I'm leaning toward watch-and-wait.  

That's about all I have for tonight. 

--michael 

Waiting for CT

And now we wait.

I had scans yesterday morning but due to scheduling, I'm not seeing Dr. L until Monday. I've been debating whether to post something between now and then or not. I guess I've decided to post.

The people at the CT reception desk have one of the most difficult jobs. They are greeting people who are likely anxious at best (what will the scans show?), tired (my scans are always in the morning and that means trying to trek into Boston ahead of the commuting crowd), hungry (no food for at least four hours prior),  and forced to drink two bottles of crappy tasting contrast that is only partially masked by a Crystal Light.  And to top it all off, the pressure is on the CT folks to keep things moving  because for many, that's how the day begins - blood draw by a nurse and then CT, followed by either MD appointment, infusion and/or other fun.

And yet at 7:30 yesterday morning, the gentleman who checked me in was smiling, pleasant and efficient. The nurse who prepped me for CT (questions, ID check, dispensing of contrast) was friendly and equally efficient; the assistant who walked me to the nurse was kind and sweet; the nurse who drew my blood? Again, smiling, chatty, and a big fan of Dr. L (not the first nurse I heard to say that). And lastly, the CT tech, friendly, personable, and from Rhode Island.

One of Dana-Farber's core values is compassion.  And to me, it's never demonstrated better than by the ability of everyone I interact with on any given day to greet me with a smile and a kind voice.  I was in and out of CT in 90 minutes and the consistency of the warmth and friendliness made a difference.

-michael

Fellow bloggers

My fellow blogger and Dana-Farber patient Tara has a great phrase when it comes to all the information about cancer out there... wherever there is. She calls it her cancer cocoon.

I like that phrase.

Sometimes the information is good, sometimes it's bad, and sometimes it's downright scary. So much so that you feel like you need a protective little cocoon to shield you from what you can't handle. That's how I felt a lot of the time during my first year post diagnosis.

Stacy would dig around online and find out information about lymphoma and follicular lymphoma, but I never looked. I'd occasionally run into some info naturally (I do work at Dana-Farber after all) but even when I started treatment, when maybe it would have been good to know more about CHOP vs. Bendamustine and alternative treatments and all that stuff, I still stayed nestled in my little cocoon, putting trust in my care team (and really the entire Lymphoma team at Dana-Farber, as they all review all the cases -- weird to think of myself as a case) to know what to do and to present the options to me.

Now, after a year plus of watching and waiting, six months of treatment, and 103 blog posts, I'm coming out of my cocoon. Part is the natural evolution of processing my diagnosis; part of it is blogging; and part of it is the small community of fellow bloggers and patients I've met, particularly in the last few months.

 I want to introduce a few of the newer ones I've been following.

Total Recovery. Full Stop. Checkmate. I Win. - This is Tara's blog, mentioned above. I'd follow this just for the title but there's more to it than that of course. I love the energy and spirit of this blog. Tara is not a lymphoma patient but as a comparison of her posts and mine will reveal, some issues that cancer patients face are universal across different types of cancer.

Lympho Bob - I didn't know what to expect from a blogger/blog called Lympho Bob, but as I found out, it's a great source of updated information about follicular lymphoma from a lymphoma patient. Regular, frequent posts for more than five years, it's a great source of lymphoma info.

Blessings in Disguise - Rachel is also a follicular lymphoma patient and a dedicated blogger whose posts are imbued with messages of faith, along with  information and even some great recipes and food photography! I may not share the same faith as her, but I do share a lot of her sentiments.

My Lymphoma Journey - Andrew is neither new to me or new to the blogging world but I had to include him here because I've been following since the very early days of my blog. He is a post stem-cell transplant patient, blogger and now book author who shares insights and information on lymphoma, cancer, healthcare, and even movies.

I would guess that as I come more out of my cancer cocoon, I'll find more fellow bloggers, and through events like the upcoming lymphoma conference, even a few more fellow follicular patients.

-michael

Just Getting Old

The jury's in. I"m just getting old.

Yesterday, I wrote about, among other things, a good and a bad run this week, trying to decide how much of the bad run was cancer/chemo related. (Notice how whenever something good happens, you don't say, "I wonder if this is because of my cancer or treatment." And, I would bet, that in some cases, you could probably trace the roots of the good back. But that's a can of worms for a future post.)

After this morning's run with my friend -- easily my favorite part of the week -- I've decided that the only thing to blame for yesterday's slow run is my fitness level. This morning's run wasn't super fast.  But it was faster than yesterday, and as always, we talked throughout the run.

Having run three marathons in my life, I always assume that I should be able to jump back into a running rhythm as if I'd never stopped. But my last marathon was a full three years ago. And although I've continued to run casually since then, due to winter weather, schedules, aging, and, oh yeah, chemo, it's been hard to keep to a steady running schedule these past six months.

I sometimes forget that when I started training for the last marathon, I ran 2 miles a day 4-5 days a week for two weeks before I moved up to running 3 miles a day 4-5 days a week. And then, I moved up to 4 miles, etc., etc. It was a slow and patient progression -- which was difficult for a somewhat impatient person. With treatment over, I think I assumed that I could just flick a switch and return to pre-treatment life, running and all.

Not so fast.

I'll have to build my running base week by week, mile by mile -- maybe even a slower build-up than three years ago (although I have no aspirations to run another marathon... a half marathon? maybe in October.) And when I get up to running 15-20 miles a week, I'll look back at this week and be glad for the progress. Until then, I'll take pleasure in the fact that four Sundays ago, I couldn't have even managed to sit and watch my boys play soccer. Progress.

Mixed Bag

This Thursday, I woke up extra early, took the 5:25 am train in to Boston and went for a run on a gray last morning of February. Beats waking up early for chemo.

Instead of the steroids, I was full of adrenaline (and coffee) and I had a good, relatively fast run. Always hard for me to gauge my speed because I don't really know distances when I'm running on the paths in an around Jamaica Plain and Brookline. But I know that I went out in just over 14 minutes and came back in under 13. That's always a good sign.

Then this afternoon, I took off for a normal Saturday run but felt like someone pumped heavy sand into my legs. Pretty sluggish - confirmed by my split times for various half-mile stretches.

What to make of it?

I'd like to be nonchalant and write it off to just a slow day, a mediocre run; they happen. I could also point an accusatory finger at my diet - the effort to eat better and shed a few pounds may have left me with a little less energy this afternoon. But in the back of my mind, I'm always wondering if this is still the lingering effects of chemo (the drugs do stick around in the body for a couple of months) or worse, the effects of growing lymphoma.

I know the chances of the latter are slim, but it doesn't take much for the weeds of anxiety to start to grow. In the process, they threaten to choke out the confidence you need to continue living normally - to live in the present without worrying about what the future brings.

I always write with music playing in my ears. It's the way I've done it for 20 years or so, to the point where I find it hard to write without music on. As I wrote this post, Another Day shuffled on to my playlist. It's an argumentative duet from the Broadway play Rent. Part of the chorus goes like this:
"No other road.
No other way.
No day but Today.
I can't control my destiny.
I trust my soul.
My only goal is just to be."

I like that song.

* * * * *

Someone asked me recently whether I sit down to write with a specific idea or if it just sort of came out. The answer is: both. I sat down with the intent of writing about how this week felt; how people often feel uncomfortable leaving treatment because they leave the active fighting behind, they leave the support of their care team behind. And I was going to write how I don't necessarily feel that. Part of that is because I don't really feel like I'm done with treatment -- not until I get scans and see Dr. L in a little more than a week. Part of it may also be that I still work at Dana-Farber so I never really leave my care team behind.

In fact, I was in a 90-minute meeting with Dr. L and others yesterday. Ironic, isn't it? I've seen her every four weeks for the last six months and the first month that I don't see her, she happens to be in a meeting with me for the second time in five years, on the very day that I would have seen her if I was still in treatment.

I was also going to write about how it feels odd when people say "congratulations" for finishing treatment. While I know what it's meant to convey -- good wishes, celebration, maybe even relief -- I still feel weird accepting congratulations when I haven't don'e anything extraordinary. Sure, finishing treatment is a good thing, but it's end is not the result of anything I've controlled. I've simply taken a bunch of drugs, hoped they do their job, and tried to carry on as close to normal as possible.

And like any normal life, it will be filled with ups and downs. Good runs and bad. Tomorrow is another day. One that will start with another run.