November 2022 Archives

Mr. Toad's Wild Ride

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Mr. Toad’s Wild Ride has nothing on this day’s adventures. (AKA, "The Thanksgiving Day Group 2 Zodiac..." Not murders, so... what, then?)

(I am starting this story from the middle: we've been in Antacrtica on the Viking Octantis for a few days, but today is different because we're going out for our first excursion on a small boat in the Southern Ocean. This is the story of that excursion. We begin our story as Heidi and Bill are preparing to go out into the cold, harsh Antarctic spring. It was foggy, but not awful, and the seas were reasonably calm, which was a significant change from the day prior.)

...Back to the room to change into our warm weather gear: our own regular underwear; a base layer of socks, pants and long-sleeved polypropylene of ours; a mid-layer of our own shirt and pants; our own heavy socks and rented heavy legs/torso layer from Viking; and an outer, waterproof and wind-proof layer of boots, pants, and Viking vest and shell; and our own gloves. As we bundled up, sweating from exertion was part of the process, so I dropped the window by about 6" to refresh the room air. Once bundled, we trundled off to the “A”-level embarkation area where we were helped into our PFDs (that’s fancy-speak for life vest, otherwise known as personal floatation devices), and upon completion of a tip-to-stern once-over by the staff and a check-in, we “booped” our room keys, thus recording our departure, and headed down the steps to the hole in the side of the ship.

The Zodiac, a trademark name for the extremely-durable, solid-floored, flexible-sided, outboard-powered boats that you have all seen in every movie with some kind of water-borne drug runners and/or SEAL teams involved, was pulled up next to the ship and we let go of the handrails, grabbed the two people in the boat, and stepped on a stool down into the boat. The water was very calm, all of about 1'—quite a change from the previous days’ seas.

With ten of us in the boat (one couple on each side in the bow, Heidi or me amidships, and one couple on each side in the stern) plus our captain, we were a fully-loaded boat. (We learned later that "fully loaded" is actually 15 people.) Our captain was garbed in his bright-yellow equivalent of our own outfits, and drove the boat’s outboard motor standing up just as one might on the way to find the catch of the day. Our boat was paired up with another, which seems to be how Zodiac excursions are conducted. Our guide was José; the other guide was Nick.

We had ten passengers aboard; the other boat, nine. So José said to Nick as we were putt-putting away from the ship, "We're heavier. You have to go slower so we can keep up." Off we went.

We putt-putted into the fog with our quite-capable diesel ouboard motor doing its job. (Diesel? Yes. Why? I'll leave that to you to figure out.) We saw sea ice, which was a dark, fragmented layer of ice just below the surface of the ocean. It was a sheet of little triangles, maybe 4-6" on each side, and we cut through it pretty easily. We also bonked into little bits of glacial ice which were blue-white and floated partiially above the surface, leaving most of their bulk below the surface. The multitude of sea ice triangles was very consistent and interrupted only by glacial ice chunks and by the trail of Nick's boat.

Pretty soon we could no longer see the ship, and we had stopped at a small pair of icebergs with the other Zodiac nearby. We could overhear their guide giving them a short lecture on icebergs and how they are formed. Our guide made a joke about how he couldn’t see the ship anymore, but the other Zodiac had the GPS, so all was well. Wait, what? He then gave us some words of wisdom about icebergs: the tons of pressure and multitude of years causes the snowfall to compress, and what once was fluffly snow becomes blue, compacted ice. When a core sample is taken, the air characteristics give a detailed history of the core sample.

It was about this time that the weather began to turn for the worse and did so rapidly. The fog which had obscured our view of the ship closed in around us, and what had been just a few snowflakes wandering around became a concerted effort to coat everything with snow. Both guides agreed that it was time to head back to the ship.

Again we putt-putted after Nick, though we had considerable trouble navigating the sea ice and iceberg ice, where Nick did not—luck of the draw, I think. We tried to follow in his wake, but pretty soon a loud clunk was followed by our motor stalling. A restart only led to another stall. José radioed Nick to let him know of our trouble and, getting no response, pulled the engine up, put one leg over the transom, and kicked at a large icecube which had become trapped between prop and fin. The blows he was delivering to the ice were rather vicious, and he wasn’t successful with the first kick. About this time, one of the wives on board sang a little bit of the Gilligan's Island theme, the part about a "three hour tour." After some rather considerable effort on José's part, the icecube popped loose.

We suspect that it was during this effort that he lost his glasses.

Anyway, we were off, though Nick had already putt-putted away, unaware that we had stopped with prop problems. The good news is that there was a “Special Ops Boat” (or “SOB,” of course—a much more capable, sheltered, and durable craft) nearby, so we aimed in its general direction and followed it in, all the while our guide was calling for guidance into the ship. Well, sure, because fog, right?

The weather had done one of its famous Antarctic Turns (a term I just coined) and had made itself quite inhospitable to a Zodiac which is trying to keep up with a much faster and less-capsize-prone SOB. We were all told to squeeze to the back of the sides of the boat so that the boat would ride in the waves better, and we held on for dear life. As we rode, we faced away from the blowing snow and the splashes of the Southern Ocean which we were either swallowing or doing our best to ignore. The waves were 4-6' high, and that’s very, very uncomfortable at any kind of speed, much less “don’t-let-that-SOB-out-of-our-sight” speed.

I was glad not to be José. He was unable to contact anybody on the radio, was unable to make sure that the SOB knew we were depending on them for navigation (and perhaps to slow down as a result), and so on. In a situation like that when I was much, much younger, I felt panic. José was cool as a cucumber, and all he could do was plow forward at "uncomfortable but probably-still-safe" speed, drenching all of us with Southern Ocean and coating us with snow.

We kept plowing onward, and then I saw the ship which I pointed out to our guide. We were all relieved since we would be back on board soon, especially since the waves seemed to have increased in height.

This is what our path looked like up to this point, according to my GPS tracker. (Ignore the red pin and the "tail" leading to it.) It's a fairly normal out-and-back trip.

As we neared the ship, though, we saw that only the large overhead doors on the side of the ship were open. Since they’re about 10' above the waterline, they wouldn’t have worked very well for us. But the little human doors made for loading and unloading the Zodiacs were closed—they’re at the waterline, and the waves were rising well past their bottoms and encroached on the bottom of the large side door opening. We think it was at this point that our guide began to refer to our boat as Zodiac 1 instead of as Zodiac 23, and he kept asking how long it would be until we could be unloaded. He was only told to hold on until the SOBs were on board, and then we’d have our turn.

The message from José to the bridge was starting to sound a little more insistent, however, though we thought it really couldn’t have been worse. But then he told the bridge that he had lost his glasses and he couldn’t see because he’s nearsighted. Having heard this, I pondered it a little bit, being nearsighted myself, and said, “Do you think you’ll be able to see the door?” “I hope so,” he said. I said, “Well, if you can’t, I can guide you if we need to.” (I motioned my hand to show that I could see and indicate direction with it.) “OK, thanks.”

I hypothesized to those assembled that once the SOBs were on board, they could close the back door then open the people door. It was a pretty good theory until the people door opened up before the SOBs were on board, thus blowing that hypothesis out of the water (so to speak). We headed dutifully towards the people door, but nobody was there.

In the meantime, Heidi was pondering, "Is 'Zodiac 1' secret code for 'Uh-oh, something’s gone wrong, get me in!'? If so, it didn’t seem to make much of a difference, because there were about ten Zodiacs circling around on the port side of the ship in swells that were 6' or more, and nothing was happening in the people door. Meanwhile, water was actually going into the big overhead side door, which is, remember, about 10' above the waterline. As we heard on the radio, the SOB was lining up for another try. It failed again. Water gushed in and out of the people door. Nothing looked good for the Zodiacs.

At this point, one passenger became an expert in the situation. He declared, with some authority, that this “situation has deteriorated to the point of being extremely dangerous.” I'm glad he said that, becaue I had no idea and thought it was just a joyride. HIs wife piped in with something to the effect of, “We’re adventurers, and we’ve never been on anything this dangerous. I mean, we’ve whitewater rafted, and it was nothing like this!”

The rest of us now knew that we can handle whitewater rafting.

We had been circling on the port side of the ship for a while, staying as close to the ship as we could without bonking into it. Oh, we might have crashed into another boat or two, but mostly, I think, because José wanted to confer with his co-guides about the situation, not because he was driving blind-ish. Nobody had any additional input, so we continued to circle, counter-clockwise, riding into the swells as we moved forward, and riding backwards on the swells as we made the return trip towards the stern. At one point, we actually surfed on the swell, and it was not so swell—a bit frightening, actually. We were all still holding on, and we got some more comforting assessments from the couple-who-knew-about-these-things. She also began asking José why we couldn't just go over to the door and unload. The rest of us kept wondering how we could do that without drowning. 

I did figure out what was acutally happening, so I explained it. (As recounted in the lunchroom by one of the couples the next day, it was a very cogent and helpful explanation.) I said, “Based on what I know about boats—I am a sailor so I do know something about winds and such—they have to have the ship headed straight into the wind and seas for the SOBs to get on board. Once they are on board, they will turn the ship so that it blocks the winds and we’ll be able to unload.” I wasn’t quite as concise at the time, of course, because salt water in your eyes and stomach make for runny nose and brain fog. However, I got the point across to everybody except the couuple-who-were-getting-a-bit-panicky. She continued to ask, “Why can’t you just go over there and unload?” I repeated my explanation of why we couldn’t and added, "There’s nobody there to catch us!”. This scene repeated a couple of times in the half-hour that we were out there doing laps.

It seemed to take forever to get the SOBs on board. "How long?" you might ask. This GPS track should give some idea of how long it took, and what it looked like:

As we found out later, the first SOB made it on OK, but the second one really had to gun it several times to get up onto the ramp far enough in that they wouldn’t be dumped unceremoniously back into into the seas, presumably with bad consequences. Once the SOBs were on board, sure enough, the front thrusters and the rear Azipods began to churn the water and all boats were radioed to stay out of the propwash. We might have gotten in the propwash a couple of times, but what's a little more excitement on the already exciting moment? And, just as predicted, with the boat turned 90° to the wind, we were on the leeward side of the boat and it was surprisingly calm as a result.

Faces started to appear at the people door in bright green dry suits with harnesses on, etc. Even Lars was there! (Lars is not the name of the first officer, but that’s what I call him in my head since he is a tall, slender, and very Scandinavian-looking 35-year-or-so-old.) And when we made our approach, he yelled out at us, very politely of course, to please wait a minute or so more, that they weren’t ready.

Perhaps in frustration, perhaps in regular preparation for unloading, José did what any other guide might do in the same situation: he drove us in one more circle and then straight into the side of the ship just behind the people door, thus gauranteeing that we would indeed be first to unload. He begain to draw parallel to the side of the ship and, eventually, the interior crew reached towards our boat and lines.

As we pulled even with the door, they handed José a line, and he attached it to the front right side of the boat. The front-most husband on Heidi's side moved out of his position to the box that was in the bow of our Zodiac, ending up facing the door—a pretty good move, I thought, to get out of the way. And then another line was handed across. Both were tied pretty solidly to the side of the ship—at which point the peak of the swell that had lifted us even with the door gave way to the trough of the same swell, thus pointing the starboard side of the Zodiac, firmly tied to the side of the ship as it was, up into the air while the port side fell towards the sea with five of us holding on for dear life. Realizing their mistake, the interior crew loosened the lines and retied them at a more appropriate tension. The Zodiac floated up and down such that we could commence departure.

That same husband made an odd move and looked like he was going to leap into the interior before they were able to catch him. Just about everybody yelled at him to "Woah! Stop! Careful!" etc. As Heidi learned the following day, again in the lunchroom, he was just trying to get out of the way of lady who seemed to want to get off the boat ASAP. OK, fair. But his timing was awful!

We began to unload into the interior. There were two yellow-suited people tied to the ship who were helping people out of the boat. The starboard side got off the boat without any incident, thus clearing the way for the port side. They got a step stool into the boat for the rest of us for some reason. We unloaded the couple in the front, and then it was the lady in the port/stern's turn. She had been pretty squooshed at the back of the boat the entire ride back in, and it was her turn to get across the boat, onto the stepstool, and out. However, several things all went wrong, nearly simultaneously.

First, she stepped across and somehow her crotch PFD strap got entangled with the motor’s tiller. It stops her dead in her tracks, so now she’s on the starboard side of the boat and can’t move forward, left or right at all, though she’s trying. To make matters worse, she was worried about having dropped her beanie, which was now on the floor near her. Somehow, between looking down for it, trying to move forward, being unable to do so, and so forth, she now fell backwards on her rear end into the stern of the boat between the tiller and the starboard rail. This movement dragged her crotch strap across the tiller’s gear selector which engaged the motor into reverse. We were now moving in reverse, or at least as far as the ship's ropes would let us go.

Her husband and I had been trying to help her across, but to no avail. She started trying to struggle up, grabbed wildly at the tiller, got the throttle and throttled up momentarily. Her husband grabbed the throttle, I yanked up on her strap so that it could go over the gear selector, and I think her husbtand then pulled the gear selector back towards neutral. We were once again back where we’d been a few seconds before. Finishing the pulling motion, her husband and I disentangled her from the tiller and she was able to move forward towards the stepstool and—blissfully—out.

I went next, her husband followed, and José presumably drove the boat back to the Hangar where it was removed from the seas.

What happened inside was pretty clearly what happens when a crew of a boat recognizes that they have a disaster unfolding and that they’ll have a lot of cold and wet people to manage back to a calm sea state. Heidi was well in front of me and was asked if she had her room card to “boop.” She told them that it was about three layers deep and they said that wasn’t a problem, who are you and what room are you in? Thus accounted for, she entered.

I “booped” my card because it was in the same spot as hers (front right pants pocket) but I have a torso and thus could remove it successfully.

Once in, we were handed towels, hot towels, and hot chocolate, and were assisted out of our PFDs and coats and such. They had gathered every pool towel onboard into two big rolling laundry hampers, and they had a stack of towel warmers which manufactured the hot/wet towels that were given to us. The chief steward, who is a warm woman and not Scandinavian, said to Heidi, “You have an empty cup, and there’s nothing that makes me more nervous than an empty cup. Here, have some more hot cocoa.” Heidi and I were in the throes of winding down the adrenaline, so the warm towels, the hot towels, all helped. Though we wanted to stand around and see what happened next, we decided that getting out of the way might be better.

And that’s how I found myself up on the fifth deck in the pretty-warm swimming pool sipping on a hot toddy while Heidi slept off the adrenaline rush in a deck chair nearby.

As we found out later, a Quark expedition ship’s Zodiac had overturned, killing two from hypothermia. Apparently, everybody else, including the couple in the front of the boat, knew about it, so we were blissfully ignorant of the real danger and just grinned, laughed inwardly at them, and bore it.

And enjoyed the hot chocolate afterwards.

PFS

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(This is part 11 in a series. Read the previous part hereNew to the series? Start here.)

It’s been some time since I last updated the world (all ten of you?) on how Heidi’s doing, but given the level of busy-ness that Heidi and I deal with on a daily basis, perhaps it’s forgivable.

A lot has happened since the last update: we sold the family house in Tolland; we had a bunch of semi-successful garage sales and such; Heidi and I adventured in Italy for 30 days; we’ve made a couple of trips to South Carolina to visit beach, family, and our southern abode; Heidi sold her business; we bought a beach house; we are in Antarctica as I finish this entry; and we’ve had several trips to Mass General to visit the brilliant minds of Drs. Lin and Schneider.

The news—and I’ll start with the punch line here—is very good, and has remained so, for each of those visits.

But a bunch of emotions are mixed up inside me as I write this. Because even as Heidi’s cancer has been stable, two others in her ROS1ders group have not been as fortunate. I read of the death of a young woman in England whose life had barely started. She has two young children and an active, exciting life. But the cancer wasn’t found until it was too late… until even the best of medicine couldn’t heal her cancer-ravaged body… until her body was so weak that any intervention caused so many side effects that she eventually succumbed to them and to the cancer. I wept tears of sorrow for her, for her family, for her friends. Those tears were also mixed with those of joy, though: for Heidi, for me, for Heidi’s family and friends, that we should not know this kind of loss… yet.

Yet.

Which leads me to the title, PFS. It may stand for a lot of things (and it does), but most relevantly here it stands for “progression-free survival.” When used in terms of medicine, it usually describes the efficacy of a treatment or progression of a disease, and it’s usually measured in months, at least in the ROS1 cancer circle. The various generations of tyrosine kinase inhibitors (TKIs) have increased the PFS for ROS1 cancers to the neighborhood of 20 months from zero. For example, lorlatinib, the drug of choice for patients whose brains have been invaded by lung cancer cells, has a PFS of 21.0 months for the 21 people who had never been exposed to another TKI who participated in the study.

The cynical side of me wonders if our health insurance company is happy to pay the $12,000-$20,000 per month in drug costs because, well, they won’t have to pay for them for that long, will they? End of my cynical aside. Back to our story.

For those who have been treated previously with another TKI, as Heidi has, that number is 8.5 months PFS for the 40 people in the study for whom lorlatinib was their second TKI. That’s right. If you started taking lorlatinib after crizotanib, say, in November of 2021, by now there’s a good chance that your cancer has resumed its unholy march through your body, unhindered and free to roam. And since it’s November of 2022, perhaps you’re thinking that you’re living on borrowed time.

That’s why “yet” and “PFS” are two three-letter words that are kind of important to us right now. And why we count every day beyond the 8.5 months PFS as a blessing, as bonus time.

However, it turns out that Heidi has been living on borrowed time in the first place. Her cancer was in the works for five years before the discovery of the metastatic tumors in 2020, so at this point, she’s eight years after her initial diagnosis. Sure, tests didn’t exist for ROS1 at that time. But that she has had little to no progression in those five years? Miraculous. As Thanksgiving weekend comes and goes, we are incredibly grateful to God for the gifts that he has given us. (See the second paragraph.)

As I write this, though, something has been niggling at the back of my head, because I discovered that I, too, have a PFS. That’s right, folks, I have an expiration date! I think I’ve related it before, but just in case I haven’t (and HIPAA be damned) I have polycythemia vera, and it’s a “lower-case ‘c’” cancer, one that isn’t malignant and which can be managed by, of all things, leeching.

OK, not leeches. But “bloodletting” doesn’t sound quite as exciting, as medieval as it still sounds. 

And until pretty recently, I was blissfully unaware that the underlying disease, while treatable with a maintenance regime of dropping off a pint of blood every now and then (which the American Red Cross doesn’t want, unfortunately), actually comes with a PFS of its own. Now, it’s measured in years instead of months, but it’s significantly less years than I had thought I might live. It’s still pretty generous, at 24.5 years or so, leaving me with the work of making it past Heart Attack Alley at 56 years and some other significant male hurdles we have to get through to make it to 90. With a father at 90 and a mother at 81, I thought I had more than a better-than-even shot of getting on up in years, and maybe because of good genes, I still do. But I could just as easily be the lower end of that bell curve as the upper end, and that put a new spin on my life’s outlook.

So, kids, I’m sorry to say this, but you’re not getting any cash from me. Instead, Heidi and I are going to do our damndest to outlive our PFSs—if need be, we’ll do it in poverty, just so long as we enjoy the time together, the places we are together, and the family which is willing to stand alongside us as we battle it out.

Because life is more than a statistic. Sure, the actuaries will tell you that it’s all quantifiable. They’ll look at my self-induced doughy middle, Heidi’s metabolism-induced “pleasant figure for, say, the 18th century,” and give probabilities that we just won’t make it.

To them, I say, Y’all haven’t met us yet. We’ve made it this far, and we’re going to make it a lot longer!

To PFS—and beyond!