October 2020 Archives

On The Cusp


(This is Part III in an everlasting-we-can-hope series on Heidi's journey to a cure for her cancer. Read Part 1 here and Part 2.)

Heidi and I had the privilege of listening to—and asking questions of!—an amazingly talented and smart group of Enormous Brains at Massachusetts General Boston Hospital. Drs. Justin Gainor, Lecia Sequist, Ibiayi Dagogo-Jack, Jessica Lin and Zosia Piotrowska were empaneled for a webinar called, New Strategies in Lung Cancer: Innovations in Clinical Trials, Treatments, and Patient Care and spoke on some of their recent research activities and positive steps they’ve made in the treatment of lung cancer.

I was pleasantly flabbergasted to see a panel composed of 80% women! STEM women ROCK. It should be noted that we have encountered nothing BUT Enormous Brains in our experience at Dana-Farber and its next-door neighbor, Mass General, and these women are four of the superstars in the thoracic cancer treatment department. As Heidi pointed out, these are women who are doing amazing, super-smart thinking and research and clinical work—and they’re also probably making peanut butter and jelly sandwiches and trying to get the kids to do their homework, too. Quite the impressive group.

We learned some interesting facts about lung cancer along the way. I hadn’t realized the progress that lung cancer treatment has made in the past decade, but Dr. Gainor introduced the talk as moderator by showing a three-step treatment graph for lung cancer as it existed then. Before about a decade ago, the graph was shorter: “Diagnosis -> Die.” That progression became “Diagnosis -> Chemo -> something-I-couldn’t-read -> Die.” Naturally, his graph didn’t show “die.” I’ve added that step because it’s what happened next—rather rapidly, too.

Then he showed a graph which showed today’s treatment options based on various biogenetic markers and it’s quite complicated. Yes, each of the paths ends in a not-so-great terminal condition, but the length of time in between steps is getting longer, progressing from months (days, really) to years. And tonight and in a few papers I’ve read, we’re learning that there are loops in the treatment protocols which may extend life, with good quality, even longer.

Their work is amazing, certainly! All are working on the treatment of cancers in new and amazing ways, but I think it was Dr. Sequist who is leading the charge in that group for early detection using such never-heard-of-by-me techniques as AI applied to CT scans, inhaled biomarkers which would be detectible in urine, and other sci-fi level testing. I was also intrigued by their predictions for the next five years. I can’t remember who said what, exactly, but there were two predictions that stuck most in my mind. One doctor-cum-scientist said she was most hopeful about the ability to use testing to construct custom treatment plans for each patient’s cancer progression. Using such tests as “liquid biopsies” (which is a neat way of saying “detecting cancers by using blood and other bodily fluids”), being able to track the progression or regression of the disease would allow on-the-fly tailoring.

The other prediction that stuck in my mind was COVID-19-driven, and I apologize to the four panelists because I can’t remember who said it. We are blessed to live within 90 minutes of at least two world-class cancer treatment centers. With the advent of telemedicine and testing at a distance, labs that can be done via FedEx, and so forth, the reach of their care and, importantly for their research needs, their ability to get data from across the globe gives them the ability to help millions more people. We’re looking forward to our next face-to-face visit with Dr. Kehl, but we’re also very thankful that others will have the ability to reach that level of care as well.

In any case, I feel very much like we are on The Cusp of an enormous breakthrough in the treatment of lung cancer, and cancers in general, with the advances in technology that we have at our disposal. I was particularly pleased to hear that these and other researchers are working to do what are known as investigator-led trials. These are trials that are led by independent, institutional investigators, such as the panel we heard this evening. They’re able to work on combination therapies which cross drugmakers’ boundaries, such as the studies led by Dr. Dagogo-Jack who is using multiple drugmakers’ treatments in patients at the same time or in sequence. The other kind of trial (that I’m aware of, anyway) is the drugmaker-led trial, where the corporation is most interested in learning how its own drug works. Now, don’t get all mad at them, that’s the right thing for them to do, and their trials enable studies like Dr. Dagogo-Jack’s... and life-extensions for my wife…

And so every time we read about someone on the ROS1ders Facebook group who didn’t make it to The Cusp, we are saddened and again reality reaches up and slaps us in the face. Our ultimate goal is a long and healthy life for Heidi, of course, but I feel like the short term goal is to get her to The Cusp where some major change in cancer treatments will make a step change in her life expectancy.

This evening’s talk gave us hope that she will one day be able to make it to The Cusp. The Enormous Brains are working on it.

Continue on to Part 4

The Ride is Worth It (Isn't It?)


(This is the second entry in a surely-to-be decades-long journal. For Part 1, see here.)

We went to Jamaica.

Now, in case those words don't shock you, let me remind you that (a) my wife has Cancer (I like to say she has "capital 'C' Cancer" because I have "lower-case 'c' cancer" which is manageable and probably won't kill me, whereas the opposite is very likely true of hers) and (b) there's a world-wide pandemic involving the coronavirus. Everything bad seems to start with the letter "C" these days, except for cookies and Christ. But this entry isn't about desserts or religion; I'll save those for another day.

Our aim in the coming months, years, and (dare we hope?) decades is to travel, and we began with a trip to Jamaica. The trip was fantastic and, though I'm sure people will eventually catch on that places like the Riu Ocho Rios on the north shore of Jamaica are deserted, we had the place largely to ourselves and thoroughly enjoyed the experience. We have already begun planning our next trip to the Caribbean where tourism has bottomed out and we can spend less on accommodations and more on tips.

The trip was a marvelous high.

Except that one time.

One day, Heidi said, "I have this ache here [pointing to her clavicle]." Instantly, I worried. "I'm sure it's muscular, from where I hauled a bag or something." I still worried. She massaged it a little bit as I realized that this was really the first taste of the down side of the roller coaster, the worry that comes with a new... something.... A diagnosis, a finding on a scan, an ache or pain, or a bruise that wasn't there yesterday. These are all hanging out in the wings, waiting for their turn on stage, where they aren't so well-received until we know what they're all about.

Fortunately, the ache ended, as did the worry. Unfortunately, the vacation ended as well.

The worry stopped pretty quickly because the most-likely-muscular-ache disappeared, but I had just had a glimpse into the life of a cancer survivor and into the life of someone whose next bad day may be as unpredictable as the surprise tunnel on a roller coaster.

Then there are the good days, days when life seems kind of normal, as if the seasons of life could possibly, just maybe, continue to change and proceed unabated. The days where a beautiful drive among the colors of the fall leaves makes you forget that there's a diagnosis that will eventually kill her hanging over your love's head. Those days are the best days.

Then there are days like Saturday when she was slapped in the face by the diagnosis which killed someone else. We joined the private ROS1ders FaceBook group, kind of expecting that the conversation would revolve around helping each other with treatments. There was some of that in our initial scan of the posts on Saturday, but there were several announcements of people whose fingers were pried from their gasp on life by their diagnosis which had, finally, killed them.

Those announcements reached up out of the iPad and slapped Heidi across her emotions with a solid SMACK! as if to say, "You won't be any different! You're going to die! You're a mere mortal and I AM YOUR DIAGNOSIS!" The sting of the slap was visible in the tears that followed and the roller coaster of emotions that she dealt with through the rest of the day and into Sunday. There was nothing I could do about it other than provide hugs and an absorbent shoulder. And yet the strangest things can change the trajectory from tragedy to comedy. These course-changers are as unpredictable as the emotions themselves.

On our way out to the Country House (i.e., my house, which is in the country compared to her townhouse), I said, "I read a tweet this morning which said to take the vowels of an animal name and replace them all with the same vowel. I'll start with 'O.' Chomponzoo." The mood changed, turning 180° on a dime, as Heidi successfully made it into a game--could we guess the animal knowing only what the vowel is? "Kitten" and "O" stumped me because I heard "cotton" and didn't even think that the leading consonant could be a "K." But that's neither here nor there. What's important is that we were on the good side of that hill, and it was the strangest little thing that did it.

Remember the part of the roller coaster when you come up a hill and then make a long slow turn towards the next frightening descent? I sure do. We have those days, too. Some of them are nail biters, such as those following the CT that she had last week. Thankfully, nothing new showed up, and what was there already hadn't gotten any bigger--or smaller.

Then there are the loopy days where the ups and downs come in rapid succession. From the excitement of transitioning from chemo to crizotonib, the ROS1-targeted drug, to dealing with the rapid onset of its side effects and dealing with those. To be fair, her side effects seem to be mild compared to others who are on the drug, but the ferocity of some of them has been a bit surprising. However, even as she begins to get used to the loops, things change and we're on another hill again.

So, yes, just like a real roller coaster, the whole ride is absolutely worth it, even as you go from anticipation to emotional pee-your-pants or laugh-your-head-off scary or fright or glee or to whatever it is that comes next... because you're in this ride with someone else, and hopefully you're in this with someone you love--yes, this ride is worth it.

The ride will eventually come to an end. We're just hoping that we'll be able to get off the ride together.

Continue to Part 3