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

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 

Small Talk

Shortly after being diagnosed, Stacy and I talked about talking -- to the kids, specifically. We didn't talk about talking for a few more months, but that's a different post. And sometime last summer we had a conversation with them about it. Part of me was reluctant to do it, but part of me wanted them to know.

There was a decent amount of stress and worry around the house, particularly last July and they knew I was making a few trips to the doctor, had a little bandage on my neck. Something was up. And we wanted them to know what that was.

Between my psychologist, the Dana-Farber web site  and Stacy, we figured out a good plan to discuss with them. We'd explain that I had cancer, but there were a lot of types of cancer and they were all different. And my type, called lymphoma, also had a lot of different types (more than 50, if you're counting) and they were all different. So if they hear friends at school talking about cancer, or if they read about it in a book, or see it in a movie, they shouldn't think that's the disease that Dad has. It's almost definitely NOT that type. (There are very few plot lines that include a character with follicular lymphoma.) And most importantly, I was now seeing some of the best doctors in the world who did nothing but treat my type of cancer. They would watch it and when they thought it necessary, they would treat it. Our lives probably wouldn't be changing anytime soon because of the news - except that I might be making a few trips to Dana-Farber now and then. 

Noah had questions. 

Was this because of those bumps on my neck? Yes, those were symptoms.

Can I go play Wii now? 

Beyond that, there weren't many questions. And, here again, we run into the good challenges of being in  watch-and-wait mode; without treatment and any visible symptoms, the kids don't see anything different. So the issue has washed back out to sea with the tide of time. And we haven't brought it back onto the beach, so to speak.

A year later and I don't think it crosses their mind and we don't look for ways to remind them. There will be time and there will be a time. For now, let them worry about more important things - how to hit a fastball or how to deal with girls, for example. 

I'm still working on both of them.

All's Well

I do like when the word "perfect" comes out of Dr. LaCasce's mouth, especially when it's prefaced with: "Your bloodwork is." That's the word from today's visit. We chatted more about lakehouses and summer houses (rent vs own, sebago vs winnipesauke), cats (siamese that cry vs. domestic short hairs that cry), sports and kids (she has a six-year old boy), our agency search (she's on the committee) than how I was feeling. 

So all clear until next visit in July - blood, scan, check up. 

This was my first visit since returning to DFCI and I did feel a bit incognito sitting in the waiting room with my ID bracelet tucked inconspicuously under my shirt sleeve. Outside my department, few people know that I'm also a patient but that my change. I think I'm going to come out, so to speak, via a blog post on our external blog 

Here's the theme: watch and wait.

Or wait and watch. It's a rehash of some of what I've been writing here, but it's a point that coalesced a bit today. See, whenever I told someone that I'm watching and waiting, I usually hear how difficult it is. Even Dr. LaCasce said that some people have a hard time with it because when you hear you have cancer, you want to GET IT OUT OF YOUR BODY. So the notion of sitting around waiting... and watching... and waiting, can seem stresful. But here's the deal: once someone tells you have cancer, you will always be watching and waiting -- whether you're waiting for a relapse, or waiting for a clean scan result, or clean blood work. Whether you're 20 days or 20 years out of treatment, you're still going to be watching and waiting. If I had treatment tomorrow and was cured in a week, or a month, or a year (not an option in follicular lymphoma), I'd still be watching and waiting. 

Which is kind of where I am now.

So let's recap. I feel great. (No longer tired now that I've kicked the little coldy thing I've been fighting). Nothing remarkable or palpably growing in terms of lymph nodes. Bloodwork perfect.