Hoping for the Best

I have a very simple New Year's Resolution this year. It's, of course, not the first time that I've taken to this blog for resolutions. Over the course of ten years of on and off blogging (mostly off these last few years), I've resolved to feed my mind, body and soul, and to be more accepting and have fun, among other things.

But first a little backstory. I am an optimist by nature -- territory I've also written about over the years. But theses past two years have tried the faith of even  the most eternal optimist. You may have noticed there's a pandemic out there that's killed millions, turned lives upside down, and tested the resilience of individual, family, and community. 

So on the one hand, you have the pandemic, and on the other hand, cancer. Scans in early 2021 showed tumor growth compared to my 2019 scans and as I booked my November appointment, it was with the expectation that we would be talking about treatment options for 2022. 

The familiar expression is: hope for the best, but prepare for the worst. Smart business planning perhaps, but also a guard against disappointment. Don't get your hopes up and you won't be let down. And I was bracing against the challenges that 2022 treatment might present: how to attend my nephew's wedding in March; how to visit Matthew in Copenhagen during his semester abroad -- presuming it still happened. 

But there's a problem with that thinking; when you prepare for the worst, you start expecting the worst -- or at least fearing the worst -- and that anxiety crowds out any space for hope, for optimism. And it's hard to be happy if you are living in a state of perpetual anxiety.

I like what I wrote back in 2013 when I said that "every year is filled with its moments of greatness, of pure happiness and gratitude... Sometimes, they're so tiny, so fleeting that you can miss them if you don't pay attention." 

If you're too busy expecting the worst and preparing for it, you can easily miss them.

A funny thing happened in November. Instead of my scans showing more growth, they actually showed some smaller tumors and others pretty stable. Will I need more treatment in 2022? I don't know. Right now, I have an appointment in a couple months and then more scans in August. So we'll see. But importantly, I feel fine. (I ended 2021 and started 2022 with a run.) And  so I'm simply going to hope for the best. Period.  

And that leads me to my New Year's Resolution, which is simply this: I will allow myself to Be Hopeful; I will allow myself to Be Optimistic; and I will allow myself to Be Happy

It's a resolution I hope a lot of people take. 

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

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

Optimism

Most people would say Matthew keeps his feelings inside --unlike his brother whose emotional state is to open books what the Super Bowl is to football.

But that's not a true description of Matthew. He's actually far from stoic. When Matthew is happy or excited, it's pretty obvious. It's only when something's troubling him that he keeps it inside.

 Here's my theory.

 Matthew is an optimist. So when things are going well, there's no reason to hide what he's feeling -- it jibes with his overall outlook. But when things aren't going well, when your world outlook is sunny, but the world is giving you a skyful of dreary, what do you do? If you were to show that you're sad, upset, troubled -- that the world isn't as rosy and shiny as you like to make it out to be -- well, that just doesn't compute with your internal programming.  So you don't let on. You still project optimism, while internally you worry that the pessimists are right. You wage an internal battle of half-full versus half-empty. And if you're a powerful optimist, you can keep the pessimism at bay. But at times, the darkness is just overpowering and it escapes from the bottle it's been kept in.  (I'm trying hard to resist Star Wars metaphors here but they seem almost inevitable.)

Matthew, most people would agree, is a lot like me. And whether or not that's good for him is open for debate, but it's been helpful for me in dealing with my diagnosis. When I was first diagnosed, it was briefly overwhelming. Yes, it was a slow-growing lymphoma. Yes, it was treatable if not curable. Yes, I felt fine. But it escaped the bottle.

Briefly.

Then it got stuffed back in. With a relatively tight seal. I jumped at the good news of a potentially great new job close to home. I convinced myself that I might not even need to have treatment for many years. Maybe the somewhat ambiguous pathology was because it wasn't really cancer. (Never underestimate the power of the force.)

That's not going to happen. It is lymphoma. The enlarged lymph nodes haven't miraculously returned to normal (although my blood work has -- and I'm no longer anemic!) and a few nodes are slowly growing. It is going to need treatment sometime; if not in six months, then maybe a year, or 18 months. It's not going to be 18 years. But that's okay. I'm in great hands with Dr. LaCasce and with Dana-Farber. I won't go into the treatment options here, but there are many good ones, I'm told. And that's all I need to know right now.

In the last couple of weeks, Stacy and I have been talking a lot about how we share the news of my diagnosis. If you're reading this, then you know about it. But beyond a small circle of people who I see daily or weekly, I hadn't told many people. It's only in the last couple weeks, that I've started to tell my old high school friends, my college friends, my coaching friends, my old colleagues from Pohly where I worked for nearly 13 years... really anyone who will listen.

There are a lot of theories for this. Talking about talking about it helped. So did this great post from my colleague at Dana-Farber. But the biggest reason for the increased openness is that I've learned over the last six months how to have my bad news coexist not just with my optimism, but with my image of myself as an active, healthy person.

It's been a tough six months.Our cat of 17 years died; Matthew broke his elbow in such an unusual way that it's likely he'll never have full range of motion in his right arm; I was diagnosed with cancer; and I lost my job for the first time -- not just in my professional career, but in my life.

That's a lot of bad juju from Darth Vader's peeps.

But it doesn't change my outlook. It doesn't change me. I am an optimist.

--michael