Hope, Even After the Other Shoe Dropped

(This is part 9 of a series. You can read the previous part here. New to the series? Start here.)

I have previously characterized life with cancer as being a roller coaster ride, but perhaps that’s not exactly right. You see, most roller coasters don’t give you choices along the way. (This brings to mind a rather silly image of stopping a roller coaster in its tracks, taking a vote, squabbling over the results, and then taking the “Tunnel of Love” route instead of the “Three Short Humps” route. Now, if someone decided to do that in real time… you heard it here first, folks. Anyway, I digress—welcome to my brain.) But we were given a choice almost eight weeks ago, and it gave us hope to have the opportunity to make a decision that, we hoped, will be for the better.

As I mentioned before, I think, we were on the scary part of the coaster—up, down, or upside-down, it doesn’t matter; whatever scares you the most—with the appearance of two small brain tumors. And by “we,” I mean, “Heidi,” of course. But it’s no less scary from the seat behind or the adjacent seat. Trust me. The following week, which is now about 11 weeks ago, we decided to wait things out, and then take action if necessary. And action was necessary.

About a week after we first saw the tumors appear, we met with a neuroradiologist and discussed, essentially and over-simply, “zapping the tumors.” Stereotactic radiosurgery is an absolutely amazing technology that can kill tumors deep in the brain with minimal effects (and without the very consequential effects on cognative abilities that whole-brain radiation has) on the surrounding tissues. In a gross oversimplification of the technology, I’ve likened it to shining a bunch of flashlights into a smokey campfire. Each flashlight doesn’t light up all that much, but at the place where they intersect, it’s a lot brighter. In this case, the flashlights are up to 200 beams of radiation, each not significant enough to do much damage to the tissues it passes through, but at the point where they intersect, brrrrrrzap! And it kills the cells in that area of the brain with a resolution of 1mm. The neuroradiology department recommended we wait about six weeks to do another MRI to see if the tumors resolved, were an artifact of the MRI and its technology, etc.

By the way, I’m an electrical engineer. Again, though I understand the results and the basics of the SRS technology, even to me this is an amazing technology, nothing short of a miracle. (More on miracles later on.)

And so we waited.

Six weeks later, we had the news: the tumors had not resolved, had increased slightly in size, and were not a figment of Heidi’s imagination. It was that same day that we made one of those very important “which way is this roller coaster going” decisions.

But first, let’s introduce the new characters in our drama: We met with two doctors, one who is a leading specialist in ROS1 in the world, and one who is undoubtedly her protégé. This time, instead of using pseudonyms, I’m going to use their real names, and I’m also going to unmask the superhero caregiver whom we had seen earlier on in this adventure.

Until now, we’d been seeing Dr. Enormous Brain, aka, Dr. Kenneth Kehl. He remains to this day one of the most amazing caregivers I’ve met. As one person said to us, “You don’t get hired by Dana-Farber if you're a slouch.” But based on our experience, you also don’t get hired by Dana-Farber unless you have a tremendous bedside manner, empathy for the patient, and ability to explain what’s going on in one of the most common and least-understood diseases we get. And Dr. Kehl has all of the above, with a sense of humor to boot. When asked how he pronounces his hame (Is it “keel” or “kell”?) his response is, “I usually just say ‘Ken.’” We still don’t know to this day.

Our decision, then, was to move away from his care to that of another oncologist. It pained us to transfer Heidi’s care from one of Dana-Farber’s best and brightest to another of Boston’s best and brightest, even though it was for all of the right reasons. We felt as if we were betraying him, choosing another doctor over him even though he is immensely capable, and we also felt as if we were leaving the superb care of Dana-Farber where, as I’ve said before, everybody from the parking garage attendant to the physician all know you’re there because something is very not right and treats you with compassion. Every medical institution in the world could learn from Dana-Farber’s model of patient interaction.

However, we met with Dr. Jessica J. Lin who is at Massachusetts General Hospital, aka Mass General; and a fellow at MGH, Dr. Jamie L. Schneider. (She doesn’t seem to have an MGH webpage, so here’s her Twitter page.) Both of these women are superbly-well qualified and trained in the science of oncology, and like Dr. Kehl, they have an amazing bedside manner which is patient-focused and, better yet, they have a wealth of experience with ROS1 NSCLC patients. After a long and thorough discussion with them, we decided to move Heidi’s care to Dr. Lin’s practice. We both will miss Dr. Kehl, but the opportunity to work with someone whose experience includes dozens of ROS1 patients is something we could not pass up.

A side note: I have the most amazing level of respect for all three of these physicians and caregivers. I know that I’m a reasonably smart person, but these three are the best of the best, the cream of the crop, the tenth-of-a-percent-ers. Whether they are intelligent or not by some scale is irrelevant to me; I can tell that they know the science to the gnat’s ass and that they are able to translate that from the microscopic level to the macroscopic, patient-centric level. For you smart young women and men who are able to communicate and empathize, and whose interests are in the most amazing fields of science and biology, consider medicine as these three do it: they are both clinicians (meaning they see patients) as well as research scientists (meaning that they conduct studies, do scientific research, and advance their field). Give it some thought.

I am honored to know all of them and for Heidi to be in their care. I am also torn by the thought that there are so many in the world who cannot see such capable physicians and who do not have access to the science, medicines and technology that we have here. I don’t know what to do with this… yet.

OK, digression concluded. Back to our narrative.

Dr. Lin and Dr. Schneider, whom I will refer to as the Dynamic Duo (because they are an amazing onco-force!), discussed SRS vs. changing Heidi’s medicine from Xalkori to Lorbrena, also known by the generic name as lorlatinib. (Insert joke about naming these drugs with Boggle dice or Genesis 5 from the KJV of the Bible). The choices were: (1) leave her on Xalkori and zap the two brain tumors or (2) change to Lorbrena and see what happens to the brain tumors. Leaving her on Xalcori was attractive because we know it is working to keep the body-centric tumors at bay, and zapping the brain tumors should take care of them. However, we don’t know that there wouldn’t be more brain tumors to show up, and there’s a limit to the number of tumors you can zap before whole-brain radiation is required. (The current recommendation is around six tumors, but MGH is experimenting with as many as 10-15. One of the ROS1ders is having 26 done, however, so the state of the art is being pushed rapidly.) Changing to lorlatinib was attractive (and was Dr. Kehl’s initial recommendation, too) because it has been shown to have very high potency in the brain. The only questions to be answered is how much would that brain penetration affect Heidi’s cognition (it’s got some pretty nasty side effects, brain and otherwise) and could it keep her body tumors at bay as well.

Here’s where some experience with a ROS1 patient pays off: Dr. Lin heard Heidi’s primary concern that she be able to continue to think at the levels that she needs to conduct and run her business, that her cognition be unimpaired by the Lorbrena, and, in combination with the fact that she only had two evident tumors, recommended a dosage of 75mg/day vs. the standard of 100mg/day. We also learned that Lorbrena is a third-generation TKI (tyrosine kinase inhibitor) and a lot has changed between Xalkori and Lorbrena, so side effects were likely to be different from Xalkori.

Of course, we accepted her advice, but not without an hour-long discussion—two-way, interactive—about the change, the ups and downs, the risks and benefits, with the Dynamic Duo. And we emerged from that meeting with confidence that this was the right thing to do. After all, when one of the docs (Dr. Lin) looks at the other doc (Dr. Schneider) and says in answer to the question of prognosis, “I feel very confident that we’ll achieve complete resolution of these tumors,” you should start crying with joy because you’ve been told that there’s a chance that your death sentence has been pushed out for a while.

And so, to the neuroradiologists’ dismay, all of us agreed that we should switch to 75mg of Lorbrena per day, and follow up in six weeks. We left with hope.

It has been eight weeks since that visit, and we had a scare between visits. Only two weeks before the followup MRI, Heidi came down and asked me if I could handle some of her worry. Of course I could, so she shared that she was scared. The cough that she had exhibited since we got back from her sister’s wedding in Houston (Happy wedding, Heather and Rob!) had stayed the same and felt an awful lot like the cough she had in January to April of 2020… you know, right before the re-diagnosis of cancer. Not quite sure what to do, I encouraged her to call MGH and see what their recommendation was because they always say, “Call.” And I sensed that they mean, “call,” so she did later that day. By the end of the day, we had a follow-up CT scan of her chest the next day, two weeks before the scheduled follow-up, and an appointment with Dr. Lin as well.

I am blessed with a job that allows me to work wherever, mostly-whenever, and so we took off for Brigham and Women’s for the CT in Boston the following morning. By the time we had the followup appointment with Dr. Lin at MGH, we had already read the radiologists' report and, to our untrained but pretty experienced eyes, it looked like things were largely unchanged. Drs. Lin and Schneider confirmed our preliminary reading and, in spite of Heidi’s guilt for taking up valuable resources (two doctors, one CT machine, a radiologist and a supervisor, etc.), we were told repeatedly that she had done the right thing. Call, then let them make the call. And they, too, were concerned, so we and they had taken the right course of action.

What we learned that appointment, though, was really fantastic to us: the lorlatinib/Lorbrena was doing what it’s supposed to do in her body, namely keeping the cancer at bay. (Remember, this isn’t a curable cancer; the best we can do is keep it from growing for as long as possible.) That gave us a pretty good hope that it was going to do the same thing for the brain. And so, again, we left Boston with hope.

And here we are at last Thursday, the day of the “ultimate test” to see whether things are going the right way or the wrong way. Or no way. Anyway…

This time, Heidi’s younger daughter, whom I will call “C,” joined us for the visit, partially for the educational value, and partially to see what the big deal is with these drugs, the cancer, etc., and also partially to see these amazing women in action. (Don’t tell C, but I think she is super smart in a not-book sort of way—emotionally intelligent, compassionate and passionate, and extremely funny, too—and will, with the right mentors, blaze a path that will gain her similar respect in whatever her chosen field of study ends up being.) And so, after a morning spent in the MRI, and a picnic in the back of the car on the top deck of the parking garage under a sunny blue sky with the emergency helicopter flying in and out, and after spending countless hours on conference calls (that’s my role here), we visited Drs. Lin and Schneider.

Heidi and her one visitor, C, went up to the visit, and I joined by FaceTime*. Of course, we had the preliminary report, and to our eyes, when it says something to the effect of, “The two intensities seen before are no longer visible,” we read that, somewhat unbelievingly as, “The tumors are gone.” But we needed another pair of much more intelligent eyes to read it before we believed it.

Funny thing: the neuroradiological team called shortly after we got that report and said, “We, um, don’t see this. Ever. No, we don’t need to zap the tumors. They’re… not there.” We, too, were still unbelieving, but that was one step to believing. It was kind of like the angel at the tomb saying, “Who is it you seek?… He’s not here. He is risen!” But there was still some doubt.

And so C and Heidi visited with The Dynamic Duo. They read the report and viewed the MRIs themselves as well with the oncology team’s radiologist, and they, too, agreed: the tumors are no longer visible. Does that mean they are gone? Well, most likely, but remember that we’re looking for control, not complete cure, and a ROS1 tumor of less than 2mm in size (the smallest discernible feature on an MRI) won’t necessarily be visible. But they had been visible. And they are now not visible.

So is the Lorbrena/lorlatinib doing what it’s supposed to do? Yes, yes it is. Heidi was in tears as she asked Dr. Lin, “Why?” And Dr. Lin, in the most compassionate way she could, said something to the effect of “Bless your little heart,” though the words were more like, “Well, the medicine is supposed to do that, and I said it would, and it has.” (I imagine Dr. Lin has never been to the south, where I write this from today, and where the phrase “Well, bless your little heart” is kind of like saying, “Oh, you poor, ignorant child…” She was kind about it, but there was no doubt that Dr. Lin was… kind. Let’s just leave it at that. We all laughed about it later!)

And so, once again, we left MGH with hope. Only this time, the hope was real. The hope was palpable. Heidi’s next scan is in twelve weeks. Will it come out clear again? Nobody knows. But we know that there is at least one drug that can do something and is doing something and we might actually have a few more days on Planet Earth, with all of its worries and heartaches and pains and wonders and beauty and kids and life.

For that, we are grateful, to God and to science.

Oh, yeah, about that: I haven’t fully fleshed out my thoughts on why I believe that science and modern medicine are a gift from God, miraculous in nature, but I fully believe them to be so. Not that God needs any help.

In any case, we left Boston that evening having had a celebratory dinner with C, Heidi, and me in the North End. We had our Upper Room experience in a way. There was no doubt. Heidi no longer had lung cancer in her brain.

And we left Boston that night with hope.

Here’s hoping for a wonderful Thanksgiving and Christmas for you and your families as we sneak into 2022!

Continue on to Part 10.

*Dear Tim Cook and the Team at Apple: Thank you for this amazing technology that let me be virtually part of the visits over the past two years, through COVID and through a cancer diagnosis and through hospital walls and onto the parking garage. With respect, Bill