Goodbye and Godspeed, Dear Friend

By Johna Till Johnson

Tom on father/daughter day, 2016

Earlier this week, a man who had become very dear to me and to Vlad slipped the surly bonds of earth.

Tom Marsilje, a cancer scientist, patient, and patient advocate, left this world on Tuesday November 14. I can’t write a better obituary than the one that appeared in the Philadelphia Inquirer, for which he wrote a regular column.

As with Vlad, Tom’s loss is more than personal. He was a beacon of hope and optimism for all of us dealing with cancer, in no small part because he lived every possible role in that experience.

As a graduate student, he became caregiver and patient advocate for his mother, helping to get her into one of the earliest immunotherapy clinical trials (in 1999) and quadrupling her life- and health-span in the process. He went on to co-develop a breakthrough drug for lung cancer. And from the time of his diagnosis in 2012 to his death this week, he experienced the disease “from the inside”–all the while serving as a guiding light for those of us in the same situation.

The loss of that light, as much as of Tom the person, was a real blow to all of us in that world.

And because cancer will strike nearly 1 in 2 of us, and touch the lives of nearly all of us, I’m including here a Facebook post I wrote for my friends in the cancer community (and yes, I hate that there is such a thing, as much as I love the fact that through it I’ve met some of the smartest, bravest, nicest people on the planet).

Tom’s approach is not a bad way to live for any of us, cancer or no.  Life, after all, is a terminal condition.

Some thoughts on Tom, and the impact of his death on me and on us. Some background: Tom and I were friends in real life, as well as on Facebook. We visited in NY and CA. He knew and respected Vlad, and vice versa.

He coordinated closely with Vlad (neuroscientist) and Dan (Vlad’s best friend from grad school, and an immunotherapy researcher at Emory). We would literally strategize together (the four of us) about the most promising treatments. Vlad was the most skeptical (he knew the odds, and also the science).

So to me, Tom wasn’t a superhero, he was a really smart scientist with early insight into how science was turning into cures.

As we all know, he also had that incredibly contagious combination of optimism and humility. Anyone who interacted with him walked away feeling, “Heck, if it can work for Tom, it can work for me!” (or my loved one).

So.

The fact that it did NOT work for Tom is a gut-punch to many folks. I mean, if super-hero-cape-wearing-scientist died ANYWAY, what are the chances for us ordinary folks?

I didn’t have quite that reaction, because I knew him better, and knew the science pretty well.

Here’s the thing.

Tom’s approach was spot on, and it continues to be spot on:

Step 1. Stay alive, and as healthy as you can possibly be, for as long as you can. That means: Build an exercise, nutrition, and treatment routine that works FOR YOU. That could be 5 minutes a day of yoga and a steady diet of Bic Macs to keep the weight on. You don’t have to run triathlons. Do whatever works for you.

Step 2. Take joy in every day, and every moment. Your “joy intake” is as important as what you eat, drink, and do. That new puppy might possibly have the same ability to inhibit tumor growth as the latest radiation therapy.

Step 3. Stay on top of the research. Keep leveraging your network. We are here, and we’re NOT going to stop researching for you. There is going to be an exponential explosion of new treatments over the next 5 years.

I know this. Tom knew this. Vlad knew this.

Some treatments will work amazingly.

Some will keep you alive until the next treatment.

And some will fail.

The stronger you are, the more runway you have, and the more treatments you can try.

And the more knowledge you have, the better able you are to point that runway in the right direction. That’s what Tom did.

And it DID NOT fail him!!

The science failed him, as it failed Vlad, and will continue to fail people we love (maybe even us). Until it doesn’t any more.

That’s how science works. It fails, until it doesn’t any more.

And we are so, close to the science not failing any more.

As awful as it is to say this, if you’re reading this now, you’re already ahead of Tom, because you’re 24 hours closer to that day (very soon now) when the science won’t fail us.

Why am I writing this? Because I know how devastating it is when your magic talisman for the future is lost.

I’ve been dreading Tom’s death less for the loss of the unique and beautiful soul that he is, and more for the fact that I’m afraid it will emotionally devastate so many people that I love, because they will lose hope.

And it does devastate people. I can’t fix that.

The only thing I can say is… following the three steps above is what Tom did, and what he’d want all of us to do.

And what, in my considered opinion as a scientist and engineer, is what is most likely to result in the CURE of everyone dealing with this awful disease.

And a permanent cure is NOT an unrealistic hope for people dealing with this disease. A long shot, yes. But It’s out there, and very, very close.

I know Tom is fighting for all of us, still.

Trip 15: Hudson River, Manhattan-Piermont-Ellis Island

By Vladimir Brezina

The (old) Tappan Zee bridge

Saturday, 1 April 2000

Launched at Dyckman St. around 6:30 a.m. Half-hour after sunrise; sun lighting up Palisades. Sunny all day, with some high clouds. Air and water warming up now, but both still cold enough for drysuit. Paddled north with flood current, crossing over to west side of the river, past Alpine, Italian Gardens, up to Piermont Pier.

Turned around with the current and paddled back south along the Palisades. Wind now picking up from the south. Lunch, around 11:30 a.m., just south of Englewood. Then continued south along the New Jersey shore. South wind 10-15 knots, whitecaps in main channel.

Opposite the last few miles of Manhattan, great view, but many delays for ferries.  At least four or five ferry landing points; NY Waterways ferries and Ellis Island/Liberty boats very active, though still few other boats. Ellis Island around 2 p.m. Still significant wind from the south.

Met two kayakers from the Boathouse, going to the Statue. Current, at least around the back of Ellis Island, already turning against me, so went with the wind back along the New Jersey Shore to the level of the Holland Tunnel ventilator. Then crossed over to the Manhattan side. Waves in the main channel fun: already longer, 2-3 ft, some breaking.

Whole scene in this section of the river always exhilarating, full of energy: great views of the skyscrapers of downtown Manhattan and opening south into the harbor; waves and wind; boats of all kinds criss-crossing the river.

Took out at the public dock on Pier 24. Paddling time around 8 hours; 36 nm.

(Note: Once again, this is an unusual route, one that most Manhattan-area kayakers would not have thought of paddling. Usually on the Hudson one either goes North (towards the Tappan Zee, now Mario Cuomo) or South (toward the Statue of Liberty). Doing both on the same trip is distinctively “Vlad”. 

Also, once again he is making excellent time. Covering 36 nm in 8 hours is an average of 4.5 knots, or 5.2 miles per hour—significantly more than a typical paddler. A good bit of this is his conscious decision to paddle with the current, which can be up to 2 knots in the Hudson.)

Trip 14: Combined Circumnavigation of Manhattan and City Island

By Vladimir Brezina

The iconic Manhattan view

Saturday, 25 March, 2000

(Note: The prosaic title does not do this trip justice! City Island is a small island in Long Island Sound; just getting there and back from Manhattan is considered an achievement by most New York-area paddlers. A Manhattan circumnavigation is a little more common—most of us have done quite a few—but still a non-trivial paddle.

But combining them both…? I wonder, from this vantage point of almost 20 years, what inspired Vlad to take this trip, after the previous runs up and down the Hudson. If I were able to go back in time and ask him, how would he have answered?) 

Combined Manhattan and City Island circumnavigation

Launched at Dyckman St. around 6:45 a.m. Low tide: wading through horrible mud, careful launch between pilings under pier. Sunshine already lighting up Palisades, but sun dimmed periodically by thin clouds. Quite warm: later, high around 60° F.

Paddled south with ebb current, against slight head wind from the southwest. Under George Washington Bridge, past 79th St. Boat Basin, Chelsea Piers; Downtown Boathouse in about 1 1/2 hours. (Note: This is very fast). Very few boats. Round the Battery; tourists already waiting for Statue of Liberty and Ellis Island boats; in a few minutes saw three of them emerging from their dock in East River.

Up the East River; waves from two of the tourist boats and a tug bounced around and built to about 3 ft. in the triable between the Brooklyn and Manhattan Bridges. Under the Williamsburg Bridge; hazy sunshine. Now going with the wind and strong current. Out of the muddy Hudson, water now very clear. Just south of the United Nations narrowly avoided seaplane taking off, and later, almost at Roosevelt Island, landing. (Note: That seaplane will appear later in our writeups; nearly two decades on, I still encounter it regularly on the East River!)

Air traffic in the East River

Took the east channel past Roosevelt Island. Current dramatically speeding up. Through Hell Gate: water quite flat (no boat wakes) but heavy swirls. Still with the current and wind, past Rikers Island, under the Bronx-Whitestone Bridge and the Throgs Neck Bridge. Reached Throgs Neck at around 11:15 a.m.: 4 1/2 hours for about 25 (?) nm. (Note: That’s a blistering pace, 5.6 knots, or 6.4 miles per hour!)

Past Throgs Neck lost favorable current, in fact now some contrary current. Good view of Stepping Stones lighthouse. Crossed Eastchester Bay over to City Island and around the east side. Water beautifully clear, blue and green. Some intermittent sun, but increasing clouds. Strong contrary current flowing south between islands. Lunch on small island with tall transmitter just off City Island. Two huge white swans looking at me suspiciously. Beach littered with oyster shells. Inviting view east among the islands, past the Execution Rocks lighthouse, out on to the open Long Island Sound.

After lunch, round the northern tip of City Island, under bridge connecting it to mainland, and south through Eastchester Bay. Now paddling with some tail current, but opposed by head wind, now building up to 10-15 knots. Whitecaps everywhere in main channel. Slow going. Back to Throgs Neck again at about 2 p. m. Turning toward manhattan, beam to the wind. Severe weathercocking: boat not balanced. Crossed over to the south shore and landed to take on water ballast (not much, but perhaps some, effect). Starting to rain; misty views of Manhattan. Back under Bronx-Whitestone Bridge, past LaGuardia and Rikers Island. Still slow going, partly against, and still weathercockng into, the wind. Speeding up with favorable current toward Hell Gate. Sun coming out again. Through Hell Gate easily around 4 p.m.

Orange sun setting into Palisades

Through Harlem River, sun low in the sky, wind dying down, water smooth. Rapid smooth progress with good tail current. Emerged into Hudson again just as the orange sun was disappearing behind Palisades. Hudson hazy and calm. Back at Dyckman St. just after 6 p.m.

Paddling time around 11 hours; about 50 nm.

(Vlad’s humorous, gentle sensibility emerges so clearly from this entry: The “huge” swans look at him “suspiciously”; the “inviting view” looking out across Long Island Sound; and the “orange sun disappearing behind the Palisades”.

Perhaps I’ve answered my own question: Vlad was forever in search of new beauty to delight his eye and heart.)

Trip 13: Peekskill to Manhattan Redux

By Vladimir Brezina

Bright sky beyond bare branches..

Saturday, 18 March 2000

7:43 a.m. Metro-North train to Peekskill. Sunny all day, no clouds at all (got sunburned), but chilly. Temperatures in the 30s, possibly just making it into the 40s. Some snow on the ground around Peekskill; puddles and shallow water spilling over into the parking lot frozen overnight.

Launched by 10:00 a.m. Paddled south against the current into Haverstraw Bay, then along eastern shore and across to Croton Point. 10-kt tail wind and 1-ft following seas (whitecaps in main channel), both increasing significantly alongside Croton Point and south into the Tappan Zee. Some icing on the boat from freezing spray.
Croton Point around noon. Followed eastern shore of Tappan Zee; wind and waves gradually diminishing. Lunch on north-facing beach at Philipse Manor, vey cold standing wet in the wind. Now good ebb current (close to spring tides today). South of the Tappan Zee wind completely calm; water mirror-smooth though still some residual ripples. Still very few boats (saw only three or four boats all day, mostly commercial, tugs and barges) but planes and helicopters flying over the river seemingly every couple of minutes.

Spent some time photographing around Yonkers. Wind then picked up from the south; head wind but not too strong. Reached Dyckman St. around 4:30 p.m. Paddling time around 6 hours; about 28 nm.

(Note: Vlad’s pale Eastern European skin was prone to sunburn, and he suffered badly from it—he would even get feverish at night.

Beyond that, the Vlad I met is emerging clearly from the page: casual familiarity with the tides (spring and neap), currents, and wind speeds. And completing a 28 nm trip in 6 hours is a characteristically blistering pace: 4.6 knots, or 5.4 miles per hour, some of it against the current!

Finally, it gratifies me that he found Yonkers, where I now keep one of my boats, pleasing enough to photograph. I’ve fallen a little bit in love with the place myself.)

 


A Prayer for Puerto Rico

By Johna Till Johnson
Photos by Vladimir Brezina

Crescent moon high above the Castillo San Felipe del Morro

Vlad loved Puerto Rico. One of his dreams was that we’d go there together some day, perhaps even circumnavigate the island by kayak (though he warned me about sharks).

Vlad knew the island well. For many years, he collaborated with a colleague at the Institute for Neurobiology at the University of Puerto Rico. That meant taking regular trips to Puerto Rico, at least annually, sometimes more often. And he took advantage of those trips to explore the island and its environs.

View of La Perla from the Institute of Neurobiology

Entirely aside from the exciting work he did with his colleagues, Vlad really loved the place itself: the warm, moist tropical air, the vivid colors, and most of all, the people.  He often told stories about his time there. One of my favorites was about the “palmetto bugs” that scientists caught from the lab floor for experiments (apparently it was cheaper and easier to catch your own than to order them from suppliers.)

View from the Castillo San Felipe del Morro

But my all-time favorite story was when he talked about how the scientists in his lab were almost universally young, beautiful women. I didn’t believe him, so he forwarded a photo “as evidence” (as he put it). Unfortunately I can no longer find it, but the photo indeed featured a half-dozen or so mini-skirt-clad young women holding martini glasses and smiling at the camera (it was an evening outing of the lab). Not exactly the first image that comes to mind when one thinks of “a gathering of neuroscientists”–no wonder Vlad was enamored of the place!

Beyond the sheer physical beauty of the island and its inhabitants, Vlad also appreciated its many biological wonders. Among  them: the bioluminescent bay
at Vieques Island, the bat caves, and the El Yunque Rain Forest.

Clouds after sunset, San Juan, Puerto Rico

I know he would be deeply saddened by the devastation that Hurricane Maria has wreaked on Puerto Rico. Fortunately the Institute for Neurobiology has reported that it has survived; but recovery will be a long, slow, painful process for them, and for everyone affected by the storm.

If you want to contribute, here is a list of charities that have been highly rated by CharityWatch and are contributing to Irma relief in Puerto Rico.

Trip 12: Hudson River, Peekskill to Manhattan

By Vladimir Brezina

Winter sunshine on the Hudson

Sunday, 5 March 2000

7:34 a.m. Metro-North train to Peekskill. Spring-like day, mix of sun and clouds. Cold front crossing in the morning and early afternoon; mostly cloudy, then gradual clearing, and mostly sunny toward the end of the trip. Very windy all day; small-craft advisory. Launched around 9:45 a.m. Few ice floes still in Peekskill Harbor and in coves south of Peekskill, and some snow further south along the shoreline of Haverstraw Bay, but, part from the bare trees, these the only signs remaining of real winter. Water still cold (according to the Web in the mid- to upper- 30s), but no longer stinging on contact.

Paddled in moderate tail wind (10-15 knots) and following seas (1-2 ft), but against the flood current, south to entrance of Haverstraw Bay, then crossed to west shore and followed it south.

Sequence of points provided shelter from the wind, then wind and waves increased with fetch before the next point. Periods of increased gusty wind raised numerous whitecaps in the main channel through the middle of Haverstraw Bay. Water leaden grey except turning light brown in the brief intervals of sunshine. South to the Tappan Zee. Current now starting to ebb. Wind increased from the west, to 20 knots or so, just north of the Tappan Zee bridge. (Using wind meter, found that real wind speeds about 5 knots less than would have estimated. Quite strong wind was only about 15 knots.)

Confused 2-ft breaking waves. Boat trim incorrect, so very strong and hard-to-control tendency to turn directly into wind. (Note: Kayakers call this “weathercocking”. As Vlad notes, in some cases it can result from loading (“trimming”) the boat improperly; in other cases it’s an inherent quality of the craft.)

Must ballast stern in tail winds and following seas. Although open framework, Tappan Zee Bridge provided significant shelter for some distance past it, but the same conditions again just north of Piermont Pier. Lunch at Italian Gardens.

Hard to pee unobserved; people everywhere along the Palisades path, and no leaves to shield my mango suit. (Note: We kayakers are forever asked, “But how do you manage to pee?” The answer: With difficulty, it’s an art!)

Wind now apparently coming from the northeast, so crossed river back to the eastern shore. Clouds now starting to break. Making very fast progress with fast ebb current (probably speeded by runoff) and tail wind. Wind-with-current conditions really smooth out the water; waves only 6 inches, but breaking. (Against the current, this wind would have produced waves of 3 ft or more.) By Yonkers wind increased again to 15-20 knots for the rest of the trip, breaking waves building to 1-2 ft. Landed at Dyckman Street around 4:30 p.m.

(Note: This is Vlad coming into his own. Notice the attention he pays to wind and current conditions, plus obvious preparation beforehand (looking up the weather and water temp). What’s most significant—though also very subtle—is the way he compares the objective situation (“..according to the Web site, mid- to upper- 30s”) with his subjective experience of it (“…no longer stinging on contact.”). He does this several times in this piece. The net effect over years of experience will be his ability to gauge the situation at a glance, with almost supernatural accuracy. In future years he will be able to estimate the wind and water conditions and forecast the weather without appearing to consult any instrumentation–the Vlad I knew.)

Trip 11: Hudson River, Manhattan

By Vladimir Brezina

George Washington Bridge on a winter day

Sunday, 27 February 2000

Launched at Dyckman Street around 10 a.m. First paddle since ice gone. Relatively mild winter day, but foggy, despite forecast, essentially all day. Brighter spots through the clouds now and then, but rather grey, and so a little cold, most of the time.

Paddled south under George Washington Bridge and along the Manhattan shoreline, with ebb current. Slight head wind (10 knots) and so some whitecaps. Later wind calmed down; in the afternoon completely calm.

Reached Downtown Boathouse around 11:30 a.m. Turned round and returned, dodging between the piers, against the current. Just south of Chelsea Piers sopke with paddler from there, Rufus, with all-new red Khatsalano and full high-tech equipment. Gave him my phone number: may go out with him and his group of Feathercrafters in future.

Lunch on the water in empty marina immediately adjacent to driving range at Chelsea Piers. Then continued north along Manhattan shoreline to 79th Street. now should have been strong flood current, but still slight ebb. Some weak flood current only much later, at peak of astronomical cycle, and in retrospect ebb current in the morning was much stronger than it should have been: presumably runoff and ice melting up the river.

From 79th Street crossed river and went up along New Jersey side. Under George Washington Bridge and back across to Dyckman Street. Started packing up the boat around 4 p.m.; now, of course, sun finally coming out, weakly.

(Note: Here we see more of the essential Vlad. First his characterization of a 10-kt wind as “slight”; most paddlers consider that substantial! Second is his joy in connecting with kindred spirits, along with his teasing characterization of the “high-tech equipment”. And finally, there’s his thoughtful analysis of the current; indeed in springtime (which was rapidly approaching) the runoff often cancels the flood entirely in the Hudson.)