Rocky Balboa, Cancer, and Me

My wife and I finally watched the movie Creed yesterday. It features the character Rocky Balboa, who has already been featured in seven "Rocky" movies. I'm going to talk about the movie Creed below, so if you haven't seen it and you plan on seeing it, don't read any further.

Here's a photo of Rocky punching some meat to block your way:




Rocky Balboa is one of my favorite characters of all time. The original Rocky came out in 1976, when I was 8 or 9 years old. I loved the story of the underdog who got a chance to make it big, and I especially loved that he had a goal -- just going the distance. And I loved that in the end, he got what he wanted -- he went the distance, and he won Adrian's heart. He's a true champion for a cancer patient.

Sometimes, when my wife has time to sneak in a nap, I'll wake her up by sitting next to her on the edge of the coach, and going through this scene:


And she's pretty good about doing Adrian's lines, even if she's still half asleep. She's good about going along with the goofy stuff that she knows will make me happy. Best of wives and women, as Alexander Hamilton would say about his Eliza.

I could go into a lot more of my love for the other Rocky movies, but let's talk about Creed.

In the movie, Rocky Balboa, now about 70 years old and grieving the death of his wife Adrian, when he agrees to become the trainer for Adonis Creed, the son of his friend and former opponent Apollo Creed.

Along the way, Rocky learns that he has cancer. This was pretty widely known even before the movie came out last year, but it was a surprise to me -- even more a surprise when the doctor told him he had Non-Hodgkn's Lymphoma!

I'm very interested in how NHL is portrayed in movies, TV shows, and in the news, because a lot of what people know about it is learned from those places. Misinformation is not good -- it creates fear (of how horrible a cancer diagnosis is) and ignorance (of what it means to be a cancer patient).

So I want to take a look at Rocky's cancer experience and see how ti holds up.

• First, Rocky gets the news: This was pretty realistic. Rocky was doing a pretty intense late night training session with Adonis when he got nauseous and fainted. He went for some tests, and then got a call from the doctor. And here's where it got very real -- he spoke calmly on the phone, and then in the next scene, he was in the doctor's office getting the diagnosis. Same thing happened to me, and it was the WORST way to get the news -- the doc said by phone, "Come on in and we'll talk about the test results," and then I had to wait four hours for the appointment. I asked what the news was while we were still on the phone, and she refused to tell me until I came in. Well, obviously it's bad news, right? That was not a good four hours. I understand wanting to be there for the patient, but I asked for the news -- tell me. I guess she wanted to be face-to-face so she could answer my questions. (Oh, wait -- she refused to answer my questions and told me I should ask the oncologist instead. But, hey -- she did offer my wife some valium.  My wife calmly refused, pointing out that we had three kids to take care of, and this was not a good time to be high as a kite. Best of wives and women, I tell ya.)
• The diagnosis: The doctor told him he had "Large Cell Non-Hodgkin's Lymphoma." Now, as far as I can tell, there is no straight up "Large Cell NHL." There are two more specific types, though: Diffuse Large B Cell Lymphoma, and Anaplastic Large Cell Lymphoma. DLBCL is a B cell lymphoma, and ALCL is a T cell lymphoma. Both of them are treated with CHOP. I'm not sure which one of these was the one that Rocky was supposed to have, but I'm going with ALCL. Mr. T, who co-starred in Rocky III, is a T cell Lymphoma survivor (though I don't think he has ALCL). So I'm going to assume that Rocky's diagnosis is a loving tribute to Mr. T. Either that, or he just made up a type of NHL that sounded real. 
• The treatment:  The doctor describes the treatment -- surgery to remove the tumors in his lymph nodes, and then chemotherapy. Rocky refuses treatment. He'd already been through this with Adrian, and it didn't work for her. He eventually gives in and gets chemo. I think he skips the surgery, which is good, because I've never heard of removing tumors from lymph nodes. If anything, oncologists want the lymph nodes to stay, since lymphomas are systemic -- the cancer cells travel through the body, so removing a lymph node where they are gathering really won't do any good. And "removing the tumor from the lymph node" is kind of silly. Rocky is shown in a treatment room, with what looks like three IV bags. I assume they are Cytoxan, Adriamycin, and Vincristine (the C, H, O of CHOP)? 
• The aftermath: I have to say, they did a pretty good job of making Rocky look tired and weak after he has the chemo. They show him getting sick, with Adonis taking care of him. I'd call that part pretty realistic, both in how the chemo affects Rocky, and in how Adonis acts as a loving caretaker. That was nice.

One problem with it all -- while Rocky had a realistic reaction to the diagnosis, in real life, he should have gotten a second opinion. The diagnosis might have been the same, but a specialist could have told him about some other possible treatment options, including clinical trials. In fact, he could have gone to the easy-to-use clinical trial search tool at Lymphomation.org and found that there are 14 ongoing trials for ALCL in Pennsylvania right now.

That's the kind of product placement I'd really like to see in a movie. An aging boxer sitting with his laptop, making informed choices about his cancer treatment.

So Creed does a decent job of handling cancer, though there could be a few changes without affecting the plot too much.

But more importantly, one of my movie heroes and I now have something in common. Besides being underdogs who won't give up the fight.

If I gave Nodes of Gold honors for fictional characters, Rocky Balboa would definitely have earned them.

I'll be back soon. I've gotta fly now.  (Rocky joke.)

Sly

I have some lymphoma-related stuff -- exciting research -- to share, and I will soon, but I just found out that today is Sylvester Stallone's 63rd birthday, so I need to give a quick shout out to him, because he's awesome. The original Rocky remains my favorite movie of all time, and I've loved so many more of his other movies, good and so-bad-it's-good, over the years.

This will be, like, three straight non-cancer blog posts, so I'll try to relate some Stallone stuff to lymphoma, just to "keep it real."

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Of course, the best thing about Stallone, lymphoma-wise, is that he introduced the world to Mr. T, lymphoma survivor, featured in Lympho Bob's Nodes of Gold. Here's a clip of Mr. T in Rocky III, set to "Eye of the Tiger."

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I have to say how much I appreciate my wife's patience with me when it comes to Rocky. She will (though a little reluctantly) act out scenes with me from the Rocky series. One of my favorites is in this clip, which I like to act out when Isabel and I are standing on a beach. Go ahead to about 2:15, when Adrian lists all of things they have that that can be replaced, and asks Rocky for the truth, and he tells her, "I'm afraid! For the first time in my life I'm afraid!" We act that one out a lot. It's some great acting, and some even better tight shorts and tube socks. Stick around for the training montage (though Isabel and I don't act that out).

I act out this one even more often, usually when Isabel is taking a nap and I need to wake her up. In the scene, which happens the night before his first fight, Rocky sits on the bed as Adrian sleeps. Rocky admits to her that he knows he can't beat Apollo Creed. He gives a little speech about it. At that point, Isabel is usually awake enough to join in, and says Adrian's line, "So what are you going to do?" Rocky lies down (and so do I) and explains that he just wants to go the distance. (Can't find the whole scene, which is a sdhame -- just this small piece of it.)

I suppose those aren't exactly lymphoma-related, but they're nice life lessons, and really, isn't that what we have to thank Stallone for?

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Of course, those of you who are Facebook friends of mine know that I use this photo of Stallone from Rocky Balboa as my image.

I use it partly because I don't want my students to see my pitcure on Facebook and use it in ways they shouldn't (I've heard too many stories of that happening), but also because most days I feel like a 60 year old palooka. Especially after a run, it seems.

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Finally, Stallone's career is so up-and-down (Oscar nominee, then named Worst Actor of the Century by the Razzies, then wins acting awards for Cop Land, then makes a movie like Rambo 4 -- that it's kind of like the waxing and waning of Follicular NHL.

OK, that cancer connection is stretch, but still -- you know you love Stallone, and there's at least one movie in this body of work that you'll watch, guiltily, on a rainy Saturday afternoon when you find it whille flipping through channels when there's nothing else to do. What finer tribute is there?

Some Quick Updates

I'm teaching a summer course, which is great, but taking up lots of time (15 weeks of work in 5 weeks -- I discourage students from summer courses). Plus, this week there's an on-campus conference on teaching that I'm trying to sneak into when I can. (I always like hearing my SCSU colleagues talk about teaching. It makes some of them seem less mean-spirited when they talk about how much they care about students' learning.) And I'm still catching up from my four days in Philadelphia.


Anyway, that's all an excuse for why I'm not being better about blogging lately. People often tell me I'm lucky to "have the summers off." I wish.


So just some quick updates on a couple of things I've written about recently.


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First, on "Not Knowing":


This morning, a colleague from another department came up to me and said he'd heard some things about my health, and he while he was sure I had a support network, he wanted to let me know he was available if I needed someone to talk to.


That was really nice. I think he's the first person outside of my department to mention my condition. It's nice to "know who knows," at least with this one person. I wouldn't have guessed it would have been this particular guy who was the first to say something. We worked fairly closely together on a committee a few years ago, and while we had a few disagreements, we worked together well. But he isn't someone I talk to regularly. I was pleasantly surprised.

So I guess word is getting around campus, which is oddly comforting.

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I've been reading some other blogs from people who also went to Philadelphia last week for the Society for Technical Communication conference. Very interesting to see what they liked and didn't like about the conference. For me, it was one of the best conferences I've been to in a while. I learned a lot.

One blogger, who calls herself Tina (after the technical writer from Dilbert) talked about sightseeing in Philadelphia. She said that one day she "made a mad dash for the Art Museum and ran up the stairs like Rocky." I didn't get to the Art Museum, and it's my only real regret about the trip. But I just couldn't find time to travel across town and back without missing something good. (Did you know I have a little bit of a Rocky obsession? And did you know that Mr. T, co-star of Rocky III, is a lymphoma survivor?)

But then I looked at Tina's own "regrets" list. A friend of hers, a Philly native, had given her "a list of things to see and eat," and she didn't do any of them, including seeing the Liberty Bell and eating a cheesesteak. I did those things and more, without sacrificing my education. So I guess I'm one up on Tina the tech writer.

One other thing from Philly that I forgot to mention: STC had a raffle for everyone who registered for the conference hotel through their web site, and I won a prize -- a nice red iPod Shuffle. Sweet! (But Lady Luck still owes me big.)

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That took way more time than I wanted it to, or could spare. Blogspot failed to save my earlier draft, so I had to retype it all. Technology -- grrrr!

I'm working on the next Nodes of Gold entry. Look for it soon.

13 Years

Today is my diagnosiversary.

13 years ago today, I was diagnosed with Follicular Lymphoma. 11 years ago today, after two years of watching and waiting, I had my first Rituxan treatment. 

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13 is considered an "unlucky" number by many. I can't say it's been entirely unlucky for me. As hard as the last year has been in so many ways, I know I'm lucky to be here. I'm lucky to have a form of Follicular Lymphoma that has grown slowly, responded well to treatment, and stayed stable since then. As much as I'd like to say I have stayed healthy for so long because of things that I did, of steps that I have taken to actively push my cancer away, I know that's probably not true. 

I've gotten plenty of advice over the years from people who tell me what to eat and how to behave in ways that will "cure" me, but I haven't seen any evidence that those things will help (as much as I would like there to be). I'm pretty good about eating my fruits and vegetables and getting up and moving, but my cancer cells are going to do what they're going to do. They just aren't good listeners.

That's just the nature of Follicular Lymphoma. It can "wax and wane" -- go for months or years without growing. And it might even shrink, on it's own. It's easy to think that whatever we did during that time was the cause of that good behavior from cancer cells. And that's OK, as long as we don't let that thinking keep us from doing things that are proven to help, like conventional treatments. Eating more broccoli won't help a cancer that has turned aggressive.

Let me be clear -- I'm not saying we don't have any control over anything. I don't believe that, either.

As my 13th diagnosiversary has been approaching, and I've been thinking more and more about "luck" and the role its played in my life as a cancer patient, a quote keeps coming back to me. It was from a book about athletes that I read (and re-read over and over) when I was a kid. One of the chapters was about the baseball player Ty Cobb, a great baseball player and a less than perfect human being. Someone accused him of being lucky, and he said "I make my own luck." 

There are lots of other quotes about luck out there that say something similar -- luck isn't about chance, but about being prepared for a situation so you can take advantage of circumstances. (I'll stick with baseball for another example -- "Luck is the residue of design," said Branch Rickey, probably a better role model for a young boy reading books about baseball.)

So eating vegetables and exercising probably aren't going to cure my cancer. But they will help keep me strong, if and when I do need treatment. And learning all I can about Follicular Lymphoma -- its biology and its treatments -- will help me work with my doctor to make good decisions when I need to. 

And, of course, doing all of those things helps me feel in control. Even if eating an apple every day won't keep the cancer away, it helps my mental health. At a time when many of us are feeling even less in control than we normally would be, even as cancer patients, it's an enormous help to know I am doing what I can to understand what is happening with my body now and where it might go in the future. There are so many things I can't control, but so many that I can. 

I can make my own luck. I can narrow the path that I walk on.

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A few weeks ago, my wife and I were doing some cleaning, and we make a really remarkable find -- the folder I had kept with notes and materials from my first few months of oncologist appointments. 

There are some typed notes, lists of questions for my first oncologist Dr. R, and then for the Lymphoma specialist I saw a few days later, Dr. C. Reading the notes brings back a lot of memories, good and bad. I can almost feel all of the up and down emotions from those few few weeks and months after diagnosis. 

(For those of you who are just starting all of this, I'm so sorry for you -- all of that unknown future, all of that focus on tests and results and figuring out what they all mean, all of those decisions about treatment options. It all sucks. A little part of that is always with us, buried, even after 13 years. But seeing it all again in my notes and in the questions I was asking brings it all up to the surface. I can only say I hope your questions are being answered and you're getting the support you need. If I can help, let me know.)

One piece of paper especially brought back memories. It was from one of my first appointments with Dr. R, after the diagnostic tests were done, and we finally had a picture of where we were. It's a plain piece of thin paper, with torn edges. I recognized it immediately. At that appointment, I didn't bring paper, or maybe my wife was using the notebook we had brought to take notes. So as Dr. R spoke, I took notes on the only paper I had available -- that "sanitary" paper that they put on the exam table, and then throw away and replace for each new patient. As Dr. R spoke, I sat on the table, spread my legs apart, and wrote furiously on the exposed paper. When the appointment was over, I tore it off and brought it home.  

The notes are all over the place, written wherever I could find blank space, shifting my legs to give me more empty space to write on. They are "all over the place," too, in terms of what I was writing, shifting from very hopeful to very pessimistic, but ending with hopeful (which isn't surprising). I remember coming home feeling better about my situation, having a slightly better understanding of what I was dealing with. It was a good feeling that would disappear a few days later after I talked to the specialist, Dr. C. (When he made the referral, Dr. R had warned me that Dr. C would be very straightforward. He was, and it put me into a very dark place for a couple of weeks.)

Another piece of paper that we found was a list of questions for Dr. C, and the first one was especially interesting --

"I am watching and waiting. What exactly am I waiting for?"

It's a question that can be read two ways, and it was written so long ago that I don't remember which one I meant.

"What are we waiting for?" can mean "Which changes in my body should we be looking for that will signal it is time for treatment?" That's a pretty standard question for people who are watching and waiting.

But "What are waiting for?" can also mean "Why are we waiting?" as in, "Why aren't we treating right away?" That's also a pretty standard question for someone on W and W, and certainly one I was asking myself in those early days. I remember thinking the idea of not treating was ridiculous the first time I read about it. I couldn't wrap my brain around it. I think a lot of newly diagnosed folks feel that way. I eventually came around to understanding the watch-and-wait approach and accepting it. (And I'm glad I did it.)

But those two ways of asking the question -- what changes am I looking for, and why am I even waiting in the first place -- kind of represent the two sides of a patient after a diagnosis. There's the physical stuff, the symptoms that need to be watched for. And then there's the big questions about goals for treatment, and how to handle the uncertainty of it all -- the mental and emotional parts of being a cancer patient. 

I've said it a lot on the past, and I still believe it -- for many of us, Follicular Lymphoma is as much an emotional disease as it is a physical one. With an indolent, slow-growing cancer, we often go months or even years without physical symptoms. But that doesn't mean we don't have the emotional symptoms that come with it all -- the fear, the worry, the guilt. What are we waiting for? Is that bump on my arm a mosquito bite or a swelling lymph node? Why am I worrying about this? Why not just get treatment? Should I call the doctor? Am I being paranoid? Why aren't there easier answers to all of this?

Both of those things matter -- the physical symptoms and the emotional symptoms. They mattered 13 years ago, and they still matter today.

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That question, "What are we waiting for?" has one more meaning to me.

I'm going to go back to sports for this one.

That question comes up a lot in sports movies. Usually about two-thirds of the way through the film. The team or the athlete has already shown how awful they are. There's no way they're going to win. And then something happens. Some breakthrough. Something that brings the team together, or that inspires the athlete with a spark of hope. There is a sudden realization that they might actually have a chance. They just need to come together, to work harder, and they can do it! And somebody says,

"Well, what are waiting for?!"

And then there's a cool training montage, of that group of awful athletes working together to learn how to win, or the single athlete digging deeper and finding the strength and will to make the impossible happen.

It's usually both really goofy, and really inspiring.

[And while I'm thinking about lots of sports movies that have this scenario (there are dozens), the one that keeps coming to mind is Rocky II. 

I love all of the Rocky movies, though Rocky 2 is my least favorite of them all. But that's what's in my head. And bonus -- in a later movie, an aging Rocky goes on to be diagnosed with an aggressive Non-Hodgkin's Lymphoma.]

And it's this third meaning of "What are we waiting for?" that I think we all need to keep in mind. 

There is so much beyond our control. So many things that we can't do.

But that doesn't mean we are helpless. It doesn't mean there is nothing that we can do.

We can take care of ourselves, physically. We can eat well, and exercise in whatever form works for us, and stay away from others who are sick.

We can learn all we can about our disease. We can know enough to ask the right questions and understand the answers and ask more questions if we don't like the answers we get. We can be active members of our care team, not just passive recipients of what others decide.

We can support each other. We can answer questions and give encouragement and share our story with people who need to hear it.

And if I've learned anything in 13 years, that's it . When someone asks "Well, what are we waiting for?" the answer should be "I'm not waiting for anything. I can start today, right now, to take control of the things I can control. I can make my own luck."

And that's true if you were diagnosed last week, or 13 years ago. It's never too late to get started.

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As always, thanks for reading. It has been a privilege to share my story with you. Thanks for being here with me.

New Feature

Today, I am debuting a new feature for the blog, "Nodes of Gold: Famous People with Lymphoma." For the feature, I will profile a famous person who has or had Lymphoma, so as to educate you all about how widespread the disease is. I'm going with Lymphoma in general, including all types, and not just NHL, as a goodwill gesture toward those who have Hodgkins Lymphoma, and who generally think they're better than those of us with Non-Hodgkins, since they came first and define who we are by what we don't have. (They call us "Leftovers.)

So, first in the series: Mr. T.

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Nodes of Gold #1: Mr. T

Mr. T is an actor, two-time winner of the America's Toughest Bouncer competition, and one-time professional wrestler.

He is best known for playing Clubber Lang in Rocky III (that's two Rocky III references in a matter of days!), and B. A. (Bad Attitude) Baracus on The A Team. Born in Chicago in 1952, he is the 11th of 12 children. His brothers encouraged him to "get big" as a way of surviving his tough neighborhood, and he eventually became a bodyguard for Muhammed Ali, Steve McQueen, and Diana Ross, among others.

His big- and small-screen success led to his becoming a national phenomenon, and he eventually had his own comic book, TV cartoon, and cereal, as well as as his own Shrinky Dink set, which is perhaps his greatest accomplishment.

His tag line, "I pity the fool!," struck fear into the hearts of millions, terrified that they had done something pitiable to Mr. T. He was an outspoken opponent of drug use (sorry, you medical marijuana fans), alcohol (sorry, most of you on both sides of the family, and most of my friends), and just plain being a fool.

In 1995, Mr. T was diagnosed with T-cell Lymphoma. Naturally, he's Mr. T, so it was T-cell and not B-cell, and he pities the fool who has B-cell, which means me. Actually, T-cell is much more aggressive than B-cell, but with treatment appropriately aggressive for Mr. T, he beat the disease in 2001, and is now in complete remission.

After Hurricane Katrina, Mr. T gave up his trademark gold chains. He recently appeared in a Snickers commercial in Great Britain.

Also, he's good to his Mom, and thinks you should be good to yours, too.

Congratulations, Mr. T! You've got Nodes of Gold!

(Be sure to click those links, especially the last two, which are just incredible.)

Dropkick Murphys

Where to begin with describing this busy weekend?

I guess we'll start with Friday night -- that's when we got the pakage from Ken Casey, lead singer for Dropkick Murphys, one of Peter's favorite bands. If you aren't familiar with them, they're Punk Irish band from Boston. Think guitar and drums, plus bagpipes and penny whistle. They're probably now best known for having their songs in The Departed, which won the Oscar for Best Picture last year. If you haven't seen it, it's all about Boston Irish cops and Boston Irish mobsters. One of the songs from the film is "Shipping Up to Boston," one of Peter's favorites (and mine, I'll admit. Good running song.)

They also have a big connection to the Red Sox. They sing a song called "Tessie," which is a very old tune about a woman who loves the Sox. They rode in the Sox Workd Series victory parade this year, with Jon Papelbon, the Sox closer, jigging along with the band. Personally, I like "Wicked Sensitive Crew," which features the lyrics "In Pittsburgh they called us closed minded/but we know that's simply not true./Yeah, we're touchy, feely, sensitive guys/I ain't ashamed I cried when Mickey died in Rocky 2!" (Yes, it was Rocky 3, but that doesn't rhyme.) Plus, I like some other songs with titles I can't print in the blog.

So that's the band.

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We knew we were going to this Irish party on Saturday, so ISabel and I looked for fun t-shirts for the kids. I saw a Dropkick t-shirt at a Bob's Store that I wanted to get for Peter (it says BOSTON IRISH on the front), but they didn't have his size. I called my Mom to see if they might have one at the store near her. She called back to tell me that my dear cuginita (little cousin) Christine was friends with the lead singer. Mom remembered his last name was Casey. "Kenny Casey?" I said. "I used to play baseball with him." He grew up in Milton, and he was a neighborhood kid, so we'd play pick-up baseball, or football, or basketball sometimes. I'd hardly call him a close friend, but I certainly remembered him. (He has the same face 30 years later.)

After I talked to Mom, I told Peter that I knew Ken Casey, and he about fainted. (He gets a little star-struck at times.) In the meantime, Mom told me that she had contacted Christine and hold Christione that Peter was such a big fan, so Christine called Ken Casey. Apparently, they knew each other well as teenagers, and have kept in touch. (Still not sure about the details of their relationship. Christine -- could you explain?)

Ken sent a package to out to us immediately: an autographed picture, two shirts, and a bunch of stickers. Here are Peter and John wearing the shirts at the St. Patrick's party Saturday:

Yesterday, we wrote to Christine to thank her, and asked if it would be OK to e-mail Ken Casey directly to thank him. She asked Ken if it was OK, and he agreed ("Anything for you," is what I think Christine said that Ken told her. Seriously, Christine, can you explain this relationship?). So Peter e-mailed him last night to say thanks. He wrote about two sentences, and I asked if that was all he wanted to say. "I don't know what else to say!" Peter told me, all nervous. "I've never written to someone who's world-famous before!" (Peter knows Dropkick is off to tour Europe in a few weeks -- thus, "world famous.")

So, thank you my dear cousin. You made Peter's week -- maybe his month. He'll be bragging about this at school for the rest of the year.


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We had a good time at the St. Patrick's Day party (two weeks early, but that's what you need to do if you want to book an Irish DJ, apparently). Catherine especially enjoyed herself. She didn't stop moving the whole night. When slow songs came on, she danced ballet. When fast songs came on, she dragged someone out to the dance floor (usually me) or just ran around in circles. Here are some pictures:

John getting down, doing the Macarena:

Catherine dancing with some friends:

Peter doing the Chicken Dance. Instead of the clapping part, he makes armpit noises:

And yes, he really did write a piece called "Concerto for Saxophone and Armpit." But every time he tried to play what he'd composed so far (with himself on sax and his brother on armpit), John would laugh too hard to make it work, so he abandoned the project.

Discussing music makes as good a transition as any. Next entry: the kids perform at the Connectocut Young Musicians Festival, and Dad runs a 5k.

Covid, Cancer, and Trusting the Trail

My wife and I went for a long walk this weekend at a state park near where we live. It was a beautiful fall day, a little cool, but sunny. 

We walk every morning, usually a couple of miles. We bring the dog with us. She's a puppy still, and has more energy than my wife and I put together. Our neighborhood has some hills, but the state park is basically one giant hill. Plus, the paths are full of ankle-twisting rocks. In other words, this is more of a hike than a walk. Lots more challenging.

Still it's fall in New England and it was a beautiful day, so off we went. The exercise is good for our bodies, and being in nature is good for our minds and spirits -- Shinrin-yoku, as the Japanese call it. Taking a forest bath. It might even help the immune system. Especially good during a pandemic. Better still for a cancer patient.

The state park has a lot of different paths to take, all of them headed uphill. We texted our son for advice for which one to take. He knows this park well (and works now in the stunning White Mountains of New Hampshire as an ecological field tech, collecting data to changes in plants, animals, soil, and water -- an ideal job for a forest bather like him).

He recommended the Orange trail -- not too steep. When we got to the park, we looked at the trail map and looked at the Orange trail and decided to take a different one -- the Violet trail. It's one that we walked a few times with our kids when they were small. It begins near a small river before heading uphill.

 When I suggested this trail, I had forgotten how rocky it was. Not just the ankle-twisters on the ground, but large basalt rocks, twenty or thirty feet tall, that needed to be climbed. The path that has been cut through the rocks made it easier, but it was still a challenge for our middle-aged legs.

We got past the big rocks and made it back on to the trail that heads to the top of the hill. This was the one we hiked with our kids years ago, and it led to a tall rock face, 200 feet high. Our son told us that a pair of peregrine falcons nests there, and doesn't like people hanging around when their babies are small. We didn't see them, and we didn't stay long. This was also the point where our Violet trail broke off into three other trails.

And that's the point where our memories failed us. We couldn't remember which trail we usually took with the kids.

I tried to get the trail map with my phone, to figure out where the three trails went to. We'd only walked a mile, half of what we usually walk in the morning. But we'd added a bunch of rock climbing. So we were already tired from our hike. 

The map didn't load very well. Poor phone reception in the woods. I couldn't really see the map in much detail.We could turn around and go back the way we came (going over the big rocks again), or we could take one of the other three trails, and hope that we picked the right one to take us back to our car.

As we slowly walked up a rocky trail on tired legs (even more tired because our puppy was pulling the whole way -- she loves a forest bath us much as our son does), my wife stopped to rest on a rock. "How much longer?" she asked.

I confessed that I didn't know. The trail map on my phone was too fuzzy to show distances, and I confessed, I didn't even know if we were on the right trail. But we were on a trail, so we wouldn't be hopelessly lost. We just might be walking for a lot longer than we'd expected (or hoped). My wife thought for a minute, and then got philosophical.

"I feel like we've been going on this walk for the last 18 months. Climbing over obstacles. Not knowing where we're going. Trusting that the trail we've been on is the right one, and whoever marked the trail new what they were doing." 

We walked on.  My guess was right -- the Red trail took us to the Blue trail, which took us to the main trail, and downhill to the parking lot.

And my wife (as is often the case) was right. She sees things clearly. Our walk really was a metaphor for what we've been through in 18 months.

And for the years before that, too, since I was diagnosed with Follicular Lymphoma. We never quite know where we're going, and we have no choice but to trust whoever marked the trail -- the doctors, the researchers, the patients who came before us. 

It helps to have some companions.

A Thank You

I didn't announce it when it happened a few weeks ago, but I was named a Finalists for the Social Health Awards. I was nominated for several of them, but after the first round of judging, I made the finals for the Revolutionary Researcher Award. They describe that one as being for online health advocates who "refuse to let medical jargon and data slow them down! The winner of this category stays up-to-date on the latest research, treatments, and clinical trials. This winner has a knack for transforming complex information into layman's terms for the greater community."

If I was going to win one, that would be the one I'd want to win for. Alas, I did not win this year.

And I didn't expect to. Even before they started judging, I looked at the other nominees for the award, and I guessed who was likely to win. And I was right. She's kind of awesome. It was a very good group of winners this year in all categories.

But this gives me the chance to thank you all - those of you who nominated me for the awards and who were able to vote for me. Recognition like this isn't necessary, but it's really nice when it happens.  

And a thank you to all of you who read the bog, and leave comments, and email me. All of that is even more important than awards. I always say I would write the blog even if no one was actually reading it, because it's good for me to keep up with what's happening in the world of Follicular Lymphoma. But it's even nicer knowing you're all out there.

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My posts were shorter than usual over the last week, and that's because I was away on vacation (though still checking up on FL World because I can't help myself).

I was in Maine, in Bar Harbor and Arcadia National Park, with about 30 or so family members for a reunion.

I don't know if any of you are from Maine, but my goodness, what a gorgeous state it is. We did lots of hiking, ate some lobsters, drank some good local beer, and just enjoyed being with each other. 

Arcadia is stunningly beautiful, and I was struck by how very different the landscapes were, just a few miles from one another. Rocky mountain trails, then evergreen-covered coast, then traditional New England fishing village. Always something interesting to look at.

(If you're familiar with Arcadia and curious, we did the Mount Gorham Loop, Wonderland Trail, Bar Island, and  Jordan Pond. Each more beautiful than the last.)

 

 

I don't have many "cancer moments" these days -- those times when you stop and gaze and you're aware that you're alive and you feel lucky. Being 16 years out from my initial diagnosis has made those moments less frequent.

But I had a few of them this past week. Walking the Wonderland Trail, at about 50 yards from the coast, I suddenly felt the air get just a little cooler, and the smell of salt hit my nose. I love that smell. You can't help but stop and focus on the moment and forget about everything else and just enjoy what's all around you. That to me is a "cancer moment." And smelling that salt air and then walking a few more steps and seeing this just brings it all into even more focus:

And then, at night, sitting with loved ones and playing a silly game and laughing together, you have another of those nice moments. You just stop and appreciate that life is good.

It was a very good week. I hope you all get the chance to have those moments every now and then.

I'll get back to "refusing to let medical jargon and data slow me down" in a day or two. I'm going to enjoy that last bit of salt air first.

 

Lighthouse Day

Happy National Lighthouse Day!

Established in 1989 to celebrate the 200th anniversary of the law that established lighthouses in the U.S., this day now recognizes and supports lighthouses and their preservation.

Two of my favorite lighthouses:
At Lighthouse Point in New Haven...











The Gay Head Lighthouse on Martha's Vineyard.



















OK, honestly, I really don't have a whole lot of interest in lighthouses. I think they're cool and all, but I'm no fanatic.

What I like is the cancer connection. There are a bunch of groups, support organizations, etc. for cancer patients and their families that have "lighthouse" in their name.

Fascinatingly, I recently saw a blog post from a cancer patient that asked why the pamphlet she received on radiation therapy had a lighthouse on the cover. She was stumped as to why there would be one there, and asked for commenters to explain. I'm not going to link to the post, because her commenters didn't do a great job of explaining the connection. (They seem like an angry group. I'm not judging. Cancer does suck, after all.)

I suppose the light beam on a book about beams of radiation is a little ironic, and possibly upsetting.

But I choose to see them for what they are to many cancer patients -- a symbol of hope. A beacon of light in the darkness. A guide through rocky waters.

And finding a seemingly random bit about a kind of random "holiday" when I was searching for something completely unrelated, I'm going to ere on the side of serendipity and just take it as a reminder that on a tough day, when there are lots of things to worry about, it's nice to have a little ray of hope.

Diagnosiversary Beach Day

Last Friday, I celebrated my 13 year diagnosiversary, as you may know.

It was a good day. Like most celebrations these days, it was not what I had planned, and not what I would traditionally have done. And that's OK.

(And, yes, it was a celebration. As I've said before, my wife always cringes a little when I say I'm "celebrating," and I always remind her -- we're not celebrating the day I was diagnosed, we're celebrating the 4789 days since that day.)

In the past, I have used January 15 as a day to "break the rules." I'm allowed, since it's my special day. That has usually meant staying home from work (that's one rule broken), going back to bed,  and the seeing an early afternoon movie with my wife. We'd buy sandwiches and sneak them in to the movie, breaking the "no outside food" rule. 

This year hasn't really been a "break the rules" kind of year. Most of the rules I can think of there are in place to keep me safe. No movie. Too risky. I won't go out without a mask, or get closer than 6 feet/2 meters from anyone. I needed to rethink my day.

We've all been very good about following Covid rules for months and months. Maybe this year we won't break rules, but we can at least break our routine?

We decided we'd take a little drive -- me, my wife, and the two kids who are still living at home (for a few more weeks, before they go back to school). I haven't driven longer than about 20 minutes in I don't know how long. So we took a drive to Hammonasset Beach, about 40 minutes from home.

It's the middle of winter here, and the temperature at the beach was about 40 degrees F (about 4 degrees C). That's the kind of rule I'm into breaking this year -- why go to a beach when it's sunny and warm?

But I really needed a beach for some reason. I needed to see some water. I've read that human beings are drawn to water, and being near it naturally brings peace. I believe it. I've lived near the ocean for most of my life (except for a few years in Louisville, Kentucky, which I loved despite its lack of salt water nearby). 

We stayed for maybe an hour, just walking on the sand, picking up shells, watching the birds, and talking. 

The beaches in New England (the part of the U.S. where I live) are not exactly world-class (too rocky for that), but they do the job just fine.

 

(That's me in the Cookie Monster hat.)

On the way home, we stopped for our usual sandwiches. It's not the same as sneaking them into a movie theater, but they were good anyway.

And my daughter was  good enough to make cupcakes that look like B lymphocytes (those are the white blood cells that turn cancerous in Follicular Lymphoma. Very satisfying to eat.)

 

All in all, it was a good day. Not the day I would have planned most years. But a good day.

And if cancer patients know anything, it's how to make the most of what you've been given.

Stay well, everyone.