Results tagged “Cancer” from Bill's Words

(This is part 11 in a series. Read the previous part here. New 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!

(This is part 10 of a series. You can read the previous part here. New to the series? Start here.)

After the scare of the last scan, which had a good outcome but which involved a lot of dread and anxiety and which I’ll write about further some other time, Heidi and I both told each other that no matter what the outcome of today’s scans is, we’ll have a good cry about it, but tackle it as we’ve tackled other major hurdles of the past month or two. And if everything is OK, we’ll have a good cry (tears of joy, of course!) and continue to tackle life.

And then everything about today is wrong. She forgot to bring her notebook of medical details and her purple pen. One of the CT machines is down. Did a lipid panel get ordered? We’re still not sure. I’m not sitting in a garage somewhere, sitting instead in the waiting room on the “wrong” side of the office. Superstitious much?

I am glad that God is above superstition. Tomorrow may be Friday the 13th, but other than having a bunch of idiots out there doing everything differently because, you know, it’s Friday the 13th instead of Tuesday the 13th, it will be a normal day. Unless something goes wrong, in which case we’ll blame it on Friday the 13th, it’ll be just a normal Friday. The good news is that God is constant, yesterday, today, and tomorrow, no matter the names or dates of those days.

So I tell myself that and ask God for forgiveness for thinking that He’s influenced by our strange superstitions. His plan supersedes our superstitions, thankfully. That doesn’t mean we’ll necessary have a good outcome today—that’s still up to the drugs and Heidi’s body’s reaction, her providers, and the skills and technology that God has gifted all of them with.

In a way, then, everything is right: God’s got a plan… even if I did choose the wrong chair.

Continue on to Part 11.

(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

(This is part 8 of a series. You can read the previous part here. New to the series? Start here.)

We had a great morning at Dana-Farber Cancer Institute today. I had been anxious all week about this visit, and I had some kind of weird premonition that something would be awry. So after we made it to DFCI at 5:45am for a full morning of thee CTs, two MRIs, and a blood draw, and the preliminary report from Dr. Enormous Brain was, “Yes, I think it all looks good. Not sure what these little things are because the neuroradiologists haven’t read the scans yet, but the thoracic radiologist and I think that’s probably a blood vessel or something” we were both overjoyed! Relief! I could stop clinching.

We went to lunch at The Mission Bar and Grill and enjoyed a delicious cucumber martini (Heidi) and Diet Coke (me—because I was running on fumes at that point—did you catch the 5:45am arrival time, which required departing Connecticut at 3:30am?). Throw in the shrimp Cilantro Lime Shrimp Salad for Heidi and The Mission Burger for me, and we had one humdinger of a lunch. And the bartender was very friendly, too!

On a whim, Heidi checked to see if the final reads had come back for the MRIs, and indeed, they had. She started reading at the top. I jumped to the last chapter. “Oh, shit.” That’s all I could say.

“What? This?” she said, pointing at the Big Word Description at the top.

I pointed at the bottom line: “…are most likely metastatic tumors.” Tumors. Plural. My innards went wobbly, and Heidi and I both began to sob quietly on the barstools with each other. I’m sure that the bartender has seen that happen there before, and it happened again today.

So that’s what a falling shoe sounds like. Silence. Quiet muscle spasms racking our bodies as we silently and tearfully recognized that the day we had been dreading… the first of the many that we have been dreading… had actually come. Our first of the worst fears had been realized.

We were fortunate that we were at DFCI which, though it is an enormous cancer institute with thousands of specialists and caregivers and patients, had enough time to see us again. We called and left a message for Dr. Enormous Brain, who had clinic hours continuing into the afternoon, and his coordinator called us back to say, “Come on up. Wait and he’ll squeeze you in.” And so we did. And indeed he did, too. He came out to the waiting room, retrieved us, and said in a compassionate way, “Well. That is not what I was hoping for.”

Though he was squeezing us in, he carefully reviewed the notes from the radiologist with us, helped us understand that the tumors are 2mm in size (which is very small, and very early days yet), and described some of the possible treatment plans. In the intervening days (I am finishing this several weeks later following that visit) we have returned to DFCI to consult with Dr. Zapthetumor, the radiological oncologist (another enormous brain!) and he’s expanded our knowledge of what’s going on exponentially.

Essentially, there are four combinations of changing drugs and zapping tumors. They are: change drugs, zap tumors; change drugs, don’t zap tumors; don’t change drugs, zap tumors; don’t change drugs, don’t zap tumors. Add in wait/don’t wait, and there are really eight paths.

Let’s do a rundown on the possibilities, starting with drug changes.

First, should she change drugs? Well, really, is there a reason to? Her current drug is crizotinib. It is doing very well at controlling the tumors in her body. From the neck down, all’s currently in check. Crizotinib doesn’t cross the blood/brain barrier particularly well. That’s an amazingly hard-to-cross physical barrier between the bloodstream and the brain tissue. It really does a great job of keeping everything out of the brain that shouldn’t be there, and only admitting the good stuff to the brain. You know, oxygen, nutrients, and so forth. However, some drugs don’t make the cut particularly well, and crizotinib is one of them. There are several other drugs that do make the crossing well: lorlatinib, entrectonib and reprotrectonib, all newer drugs of the “…nib” type. They can cross that boundary and, in theory, can find these two tiny tumors in her brain and kill them with carefree abandon. So why not go ahead and switch to one of those?

There are four reasons not to switch:

1 - Each one comes with more side effects than the crizotinib, which she’s tolerating pretty well.

2 - Every new tyrosine kinase inhibitor (TKI) that she starts means that she can’t go back to one that she’s already been on, so it’s forward motion only, so that’s the downside. Weight gain, neuropathy (tingling and numbness in fingers and toes, for example), and other unpleasant side effects can happen, but they’re not guaranteed, nor are they worse than death. So lorlatinib has a pretty good upside. If it works.

3 - We think that the more TKIs she’s been on, the less likely she’ll be accepted into a study for a drug which is entering clinical trials (we hope!) this fall. I am hypothesizing that the more confounding factors involved in her previous treatments, the less likely the statisticians will recommend her as a good candidate for the new drug’s trial.

4 - We don’t know how effective the new drug will be in general. Remember that none of these “nib” drugs were specifically designed for ROS1 fusions. Really?! Yep. They were all designed for ALK mutations and they happen to work against ROS1. There’s a risk, though pretty small, that the new drug won’t be as effective.

So, stick with crizotinib.

Second, there’s the question of what to do to the two 2mm tumors in her brain. They are very small: 2mm is a bit thicker than a penny, so they’re very, very small. (Note to Dr. Inthedark, the enormous brain who read those films: Thank you! for finding those minuscule spots!! Every doc we’ve met with who saw those spots says they were impressed that they were found in the first place! In fact, Dr. Zapthetumor said that they are at the hairy edge of being visible on an MRI—a 2mm spot is as small as can be detected!)

I’ll start with the punchline first: Dr. Zapthetumor said to wait and get another MRI six weeks after this one because there are several unknowns:

1 - Are these two spots real, and might they go away on their own? In answer to the first question, they are most likely real and not necessarily an artifact of, say, the angle at which Heidi’s head was placed in the MRI. Two of them appeared at the same time, which is too coincidental to ignore. And in answer to the second question, yes, they could. Crizotinib does have some effectivity on the other side of the blood/brain barrier, but that’s a low probability outcome. Could they just get absorbed somehow? Yes, that’s happened, too, according to others in the ROS1ders group. So a second MRI is necessary to see if they’re real and if they’re still there to treat.

2 - If these two spots are real, how fast are they growing? If they’re growing quickly, then intervention is necessary sooner than later. Again, since our goal is to preserve Heidi’s candidacy for the clinical trial this fall, we might want to delay until the study gets to say “Zap em!” or not. However, with larger size comes greater risk to surrounding tissue during SRS and greater the chance that neurological effects (when the tumor’s around 20mm or so, roughly the diameter of a penny) may be observed, so there’s a delicate balance here. Also, Dr. Zapthetumor said that the trials he’s known of have asked that SRS be performed before the trial. So we don’t know much more than that.

3 - Are there more of them? If so, how fast are they appearing? We only have two snapshots in time separated by six months, so we have no idea whether there are more, tinier tumor seeds lurking elsewhere in her brain. Beyond a certain number of lesions (fancy word for “tumors”), you don’t get to use SRS and have to look at whole-brain radiation.

Err… es-squeeze me? SRS? Whole brain radiation?! Like, Three-Mile Island?!

Yes. Well, sort of. So let’s take a moment to talk about radiation.

Every minute of every hour of every day, you and I are bombarded by radiation. It comes naturally from the sun, from our environment, from electrical devices and radio stations, and really there’s no way to avoid it. Most of that radiation, if not all, has absolutely no effect on us. But when a cell is exposed to a high enough dose of radiation, the cell is damaged beyond repair and it dies or mutates. (Of course, in the case of cancer, we hope to kill the cell, not have it mutate!) What is “enough”? Well, it’s a function of both time and intensity. Expose a cell to a low dose of radiation for a long enough time, and it’ll die. Expose a cell to a high dose of radiation for a short time, and it’ll die. Keep that time-dose exposure low enough, though, and not much happens.

The least-invasive and lowest-side-effect means of killing cancer cells in the brain is to do what is known as stereotactic radio surgery, or SRS. The procedure is entirely non-invasive and uses upwards of 200 very small beams of radiation to kill cancer cells. The procedure works because each of these 200 small beams isn’t strong enough to do much harm to the tissues it passes through. However, where all 200 of them intersect, there’s a lot of radiation and the cells in that intersection are killed. If you want to see how this works for yourself, next time you have a campfire, shine two flashlights through the smoke at each other. You’ll notice that the beams are brightest where the two of them intersect. That’s exactly what SRS does, except with 200 very low-power beams of radiation so that where they intersect, you get 200 times as much radiation.

I asked three questions about SRS which I hadn’t been able to find on the web.

First, what’s the resolution of SRS? It’s 1mm, which is amazing (to me, anyway), which means that that 2mm lesion can be zapped, and a minimal amount of tissue around the lesion will be touched.

Second, when a tumor is removed from the body, a “clean margin” is established around the tumor. The margin is determined by microscopic examination of the tissue to see that there are no cancer cells at the edge of the removed tissue. Since you can live without good chunks of each organ in your body, that’s OK below the neck. But in the brain, since all brain tissue is important, the minimum amount of tissue is zapped because you might zap something important, like Aunt Irma’s recipe for carrot cake, and that would be a tragedy. (Or walking. You know, nothing all that important.)

Third, what’s the upper limit to the number of lesions you can treat with SRS? Right now, that number seems to be about six. Why six? There’s a lot of computation that goes into making sure that the current treatment doesn’t intersect with any other ray from any other treatment. Why not? Well, same reason as before—the more radiation that a cell gets, the more damaged it becomes. However, at DFCI, they’re experimenting with a randomized group of patients where they think they can treat up to 20 lesions before damage becomes a problem.

Then what about whole-brain radiation? How do the cancer cells get zapped and not the good brain cells? Well… they all do, and nobody really knows enough yet. There are very likely to be long-term side-effects of whole-brain radiation. So we’d really, really, really like to avoid it.

There’s a lot that will go into the decision whether to use SRS or WBR and when, which led to another one of my questions, Is there a risk of leaving these tumors there? Will they spawn other tumors? The simple answer is, No, they won’t, but they might get bigger and require intervention anyway. Wait a minute… how’d they get there in the first place? What I didn’t know is that when you talk about a metastatic cancer, what you’re saying is that the cancer from one part of the body left that part of the body and is now found somewhere else. These things in Heidi’s brain are most likely not brain tumors, but likely are lung cancer cells growing in Heidi’s brain. Weird. What that means, though, is that they travelled north from her lymph nodes through the bloodstream until they got caught in the brain and started to grow there. (There’s a fancy word with the root of “hemo” which I can’t remember for this activity of wandering about via the bloodstream.)

And there you have it. Wandering cancer cells, zapping tumors, the blood brain barrier, and hope.

Speaking of hope, someone asked me how we cope with this. Heidi is an effervescent ray of sunshine and somehow “optimistic”s her way through things, and if there’s one thing that you apparently need as a cancer patient, it’s optimism. (Tell somebody about cancer, and without a scintilla of expertise, they’ll assert that you need to keep your spirits up and to be positive—whether it’s true or not.) Me? I bury myself in the research and look at all possible avenues, and as long as there’s an avenue, I’ve got hope. I can tell you that I don’t place all my hope in science and that I have a good deal of faith in God, too, because there are just too many variables of the cancer’s progression (or regression!) for any of us to have true control of what’s going on.

Only One has that kind of power.

Read Part 9 here.

(This is part 7 of a series. You can read the previous part here. New to the series? Start here.)

D-2 Days

In two days' time, we'll be back at the Fortress of Cancer Research, Dana-Farber Cancer Institute. There we will meet with Dr. Enormous Brain. Heidi's blood will be sampled and analyzed using  Heidi's body will be examined using magnetic fields, radio waves, and X-rays. Dr. EB will look upon the results and declare, "Hmm, not bad," or something along the lines of, "Well, that's not so good."

I understand scanxiety, though I'm not the one undergoing the tests. During the beginning of the week, she was upbeat, positive that the results of Friday's scans will be good. In my engineering head, I know there's no real way for her to know unless something is bad enough for her to notice. But until then, it's really a tossup governed by the biochemistry—or "biochem-mystery"—that is the functioning of the human body. Amazing stuff, but pretty darned unpredictable. Certainly not predictable enough to say, "Yep, it's all going to come out well on Friday."

D-1 Day

It began to affect her yesterday. The anxiety was beginning to peek through. She got angry where she would have merely been annoyed. Weepy instead of dry-eyed. That sort of thing. And it really manifested itself more today when she admitted to her anxiety.

I began to ponder what I will do if the results are anything less than neutral at worst. Am I ready to handle the renewed concern, anxiety, worry? Can I handle not knowing what is in store without imploding myself?

As I ask myself these questions, it dawns on me that the answer does not lie within, but without. You can't derive peace from turmoil. I would liken that to standing in the middle of a sandstorm and trying to have an intimate moment with your spouse. Yell at the sandstorm, shield yourselves as much as you might, but it's not going to help. Instead, you have to look to God for the ultimate peace—the peace, as the Bible says, that passes all understanding.

D-0 Day

It is the morning of the scans and our visit to Dana-Farber. You might think that I'd be most concerned about what I will do in Boston for 7 hours while I need to work and she's in the Institute. But, no, that's not my concern. My anxiety is still looking forward to that moment when we have Dr. EB on the phone... well, I'll be on the phone and the two of them will be in the Institute... and he'll say something like, "Well, we got the scans back and..." (Drumroll please. And let me tell you something: HGTV has nothing on this kind of tension with their silly, "We chose... [pictures of each participant, the houses involved, the dogs, the cats, the leaves and rain]... The Little Bungalow!" cliffhangers.)

The reality is that unless something has changed drastically, the Xalkori/crizotanib should still be doing its thing, for a while anyway. We're only about four months into this treatment and median (Or average? I can never remember.) progression-free time is something like 21 months, so we really don't have to worry about that, unless she's an outlier... which she has been in the past... so... [insert anxious music here].

But the MRI is something new, and if there's something that terrifies Heidi, it's brain metastasis. Why? Because Xalkori doesn't cross the blood/brain barrier. It makes good headway between the bloodstream and most (all?) other kinds of tissues in the body, but the brain is a special fortress of solitude, taking in only what it deems worthy, and Xalkori isn't one to make it across that moat. (So maybe "headway" wasn't the best word, huh?) There are other ROS1 TKIs, though, which can cross that barrier, but finding "mets" in the brain would be a pretty significant step... and not in a positive direction.

And so that's where I am. I can feel my anxiety today, which is a bit more than usual. I will pray right alongside Heidi and the rest of you for peace and wisdom, both for me and Heidi and also for Dr. EB and the folks at Dana-Farber, especially those whose journeys are further along and not headed in a good direction. And I'll do my best to be not anxious, because as Paul wrote, "Be anxious for nothing, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."

Amen.

(Don't forget the thanksgiving. We owe a lot of that to Him!)

Continue to Part 8

(This is part 6 of a series. You can read the previous part here. New to the series? Start here.)

I’ve been contemplating the choice between these words over the last few days.  

Yesterday (2/4) was World Cancer Day.

Today—looking back—is the 6th year since my single lung tumor was discovered and I started a Survivor Journey.

Today—looking forward—will be our 3rd day at Dana Farber Cancer Institute. This time for routine (How is that word even used in cancer care?) blood work, CT scans of my entire short torso, and an MRI of the brain.

Tomorrow—the sun will still come up and we will again be grateful for the day that the Lord has made and that we get to be in it. 

On my calendars, 2/5 has the notation of “Anniv #6”.  But my view of that has changed over the last seven months.  

An anniversary is some event that happens every year, each cycle around the sun. Dependable events, ones that are to be remarked upon or have memories revisited.  

February 5th no longer feels like an anniversary of a static event.

Since the recurrence of my cancer seven months ago and the miraculous discovery of the ROS1 RNA fusion, the things that felt like past accomplishments don’t feel just the same. “Cured” was a short step on my Survivor Journey. This is now (and maybe always has been) a dynamic and changeable path, one that we have to follow with Faith with the knowledge that our work and impact here is not yet done.  

So, I think the word milestone is more appropriate now as my confidence that anything will be the same 365 days from now as it is today has changed.

Along the way, we will have many more milestones.

Today—looking back—is the 6th milestone of stumbling upon a tumor that we never would have looked for in a never-smoker. And my life was saved.

Today—just now—is the daily Blessing that there are medical miracles, that my cancer has been typed, and that a treatment is available. (Imagine: Heidi taking a gulp of water and swallowing that big Xalkori pill. It's almost as big as my pinky!)  The ROS1ders have been a light in our lives to know that I have a rare cancer diagnosis but that we are not alone in it.

Today—looking forward—is the 2nd milestone when the scans will come back looking good and my brain will still be clear of cancer and just full of love and faith and quirky humor.

Tomorrow—we will start packing for another milestone trip to favorite places with our loved ones.

I am supremely grateful and know how blessed that I am to have had each of these last 2,190 days. AND I fully expect to have thousands more!

Thank you for all the Hugs and Prayers - they work!

Heidi

Continue to Part 7

(This is part 5 of a series. You can read the previous part here. New to the series? Start here.)

Hi, Y’all!  This is my first foray into blogging and I am not a seasoned pro like Bill.

So we waited and while Bill was posting, the sun set and we waited a bit longer to hear from Dr. EB.

I was in the tenth-floor waiting room. Bill helped pass the time by standing in a visible spot under the Christmas trees on the plaza and waving up at me until I could see him. You can envision the scene for the others passers-by on the ground and the other cancer patients in the waiting area, as we were both standing and staring at some spot and doing a full-length arm wave like we were trying to land a plane. All silently and socially distant, so as not to disturb others! 

And Dr. EB understands the stress of waiting and responded. He called me in at 5pm, a full half hour early! We got Bill on the phone and then braced for the news.

Dr. EB didn’t bury the lede—the scans looked good! Indeed they had to look thoroughly to compare, but the tumors had shrunk and my lymph nodes are now normal-sized.  Pause for a tissue—we were both a bit misty with relief. We both had a silent and not-so-silent, “Thank You God!”  

A few more details of side effect management and review of the radiology notes, and then another reassurance of, "The tumors are normal-sized. The Xalkori is working.”

The waiting is over. The news is good. The prognosis is greatly lengthened. So many prayers and effective warriors have been heard. We can look forward again, and maybe for longer than two months at a time.  

We know that there will be more waiting. But just for now, it is a time for gratitude and celebration! And maybe a really good bottle of wine!

Maybe our next entry can be about a travel adventure and not a medical one. :-)

/Heidi

Continue to Part 6

(This is part 4 of a series. You can read the previous part here. New to the series? Start here.)

For Heidi, the last three or four days have been anxiety-filled. I can't imagine what it feels like, though I have had pretty severe bouts with anxiety myself. Others in the ROS1ders group describe similar anxiety. It's an anxiety that I hope neither I nor you ever have to deal with, though I'm pretty close to it right now: the anxiety associated with finding out if your cancer is progressing or is in remission.

And so I sit here on the rooftop of a garage in downtown Boston near the Dana-Farber Cancer Institute. Near, and not in, because I'm not allowed to go in with the patient, Heidi. So while I'm sitting out here, enjoying one of Boston's most beautiful fall days (60°, sunny, clear blue skies, light winds... really quite perfect), she's inside. The good news is that DFCI does their best to ensure that the patient, Heidi, gets tests done in short order and all in one visit.

They called the patient, Heidi, a couple of weeks ago to make the appointment. First, bloodwork at 1:50, please arrive no sooner than 20 minutes prior to your appointment to ensure that there aren't too many people in the building. And the patient, Heidi, will be the only one allowed in. No visitors because you've already had your first visit where the patient, Heidi, can bring a visitor.

After that, go to have a CT scan done at Brigham and Women's Hospital. To get there, go from DFCI to Massachusetts General which requires a vertical traverse of several floors, a horizontal traverse through a bridge, and another vertical traverse through MGH. From there, walk a ways to another bridge to BWH, grab an elevator, and check in on the appropriate floor. We'd like you there at 2:30 so the patient, Heidi, can have 32 ounces of Raspberry-Flavored Barium Contrast. Is that dessert, perhaps?

After that, the patient, Heidi, will see the oncologist (reverse the path above) at 5:30pm. On a Friday afternoon. Yeah, he works long hours. But we're very happy that the patient, Heidi, is getting to see Dr. EB (Enormous Brain) and that he can consult with others in the thoracic cancer unit who have seen ROS1 patients before. It's not a specialty that everybody has because there are just so few ROS1 cases in the world at any one time. (That there's a targeted therapy at all given the low population of cases is, in my opinion, a miracle in and of itself.)

Now, I'm not making fun of any of this. It is wonderful that we're able to drive to Boston on a Friday afternoon, that she can have all of these labs and tests done prior to her oncology appointment in one day on the same visit, and then that she can see Dr. EB who has seen ROS1 patients before. In spite of the fact that I am not allowed to accompany the patient, Heidi, into the appointments for hand-holding and reassurance, we consider this time here in Boston to be a blessing.

And it's beautiful outside. So I can't complain about being out here, either.

However, no matter the circumstances, there's waiting involved. Is the cancer progressing? holding steady? in remission? We won't know for another couple of hours yet.

Imagine that you're the patient, (insert your name here), and try to feel like the patient, Heidi, as she walks the halls of DFCI, MGH, and BWH on her own, stopping to ask for directions (only twice!), being nervous about the tests you're about to have, being stuck with a needle (only once! I must say, these folks have their act together! the blood draw was done with an IV which was left in for anything else that might happen today!), having a scan done in a big machine ("hold your breath.... now breathe") which whirs disconcertingly around you ("whirrrrrrrr WHIRRRRRRRR!!"), and knowing that all of this effort and mental stress that you're going through may end up at the end of the day with a diagnosis which says, "You're progressing, and that's great, Live some more of your life!" or "It's not working. Remember when we said eight months? Well..."

If you can put yourself in her shoes right now, you'll have an idea of what it feels like to really wait.

I wait, too. However, I have work I am doing with a laptop, a cell phone tether, and a big Diet Coke which has melted to ice water at this point. I am distracted enough that I merely wait. Now, at some point, the patient, Heidi, will make a phone call when she's in with Dr. EB, and together we will wait out the last few minutes before his declaration.

OK, I'll be a bit more transparent here: I'm going to have to do some work tomorrow, too, to make up for the fact that I wasn't quite distracted enough by work. So Ipaused to write this and that I, too, might be waiting right now.

I might also be praying, too. In fact, not "might." Am.

That reminds me that the Bible says a lot about waiting. Funny thing, though: the Bible doesn't say anything about waiting for a cancer diagnosis. It talks about "waiting on the Lord." Since the Bible mentions "waiting on the Lord" well over 50 times, it would seem that it's just as difficult, if not more so, to do.

But right here, right now, waiting seems to be much, much harder.

Added 3:56pm: The scan is done... and right now, there's a computer somewhere with all the information in it necessary to make a conclusion. And so we wait some more.

Continue on to Part 5

(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

(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

It has been a good day. That’s compared to yesterday, which was a not-so-good day. And the day before it, that one was a not-quite-bad day. The day before that? That was a horrible day. The day before that day? Oh, that one was superb.

And thus began the roller coaster ride that is cancer. My fiancé, Heidi, is a cancer survivor. She was accidentally diagnosed five years ago with a stage I non-small-cell adenocarcinoma tumor in her lung. “Accidentally” because she went in for a chest x-ray because she had some pretty serious bronchitis. When she woke up from the surgery which was to remove the newly-found tumor, she was told they’d removed her lower left lobe, which equates to a significant part of her lung capacity. She was a tad dismayed, but when she was told that she was clear of cancer—cured, as it were—she went on her merry way.

…until somebody reviewed what they found in her lung and decided that the lymph system had been involved. And so they threw the kitchen sink at her: chemotherapy with cisplatin. Having survived that with flying colors, she was declared cured pending five years of followup.

In the meantime, she and I met in October of last year. Because of COVID Spring 2020, we had considerable time together, learning more about each other than I think either one of us thought possible in such a short time. She watches out for my health, and I watch out for hers. Neither one of us is a spring chicken, having just turned 50-years-young, but we’re in pretty good shape. She had some bronchitis early this spring with a persistent cough, but that’s about it. And I have an array of weird genetic and non-genetic anomalies that make me just interesting enough to the docs to keep them interested.

And so it would not have been at all surprising to anybody if Heidi had called and declined a 5-year CT scan, saying that COVID-19 “is a thing” and that she feels fine, which she does! But no. Instead, the ever-compliant patient dutifully reported for her final and fifth annual CT scan, the one that decides whether she has earned the label “cured.” A few zaps of the X-rays later, and she was prepared to hear the words,

“Off you go! You’re cured.” Whee! It’s all down hill from here!

What she heard devastated her and me both. Instead of “clear” and “unremarkable,” the words were “concerning” and “suspicious.” Her oncologist called her in and explained that there appeared to be cancer in several lymph nodes. Worse yet, if it really were metastatic non-small-cell lung cancer (mNSCLC), then the treatment plan would be palliative.

Palliative Care is not End-of-Life Care (Even Though it Kinda’ is…)

For those of you not familiar with what palliative care is, let me explain that it’s not the same thing as comfort care, such as is hospice care. What it means is that the treatment is not going to cure the patient and is going to be something that lasts throughout the rest of the patient’s life. But because cancer is a mean and nasty disease, palliative care would last for months, maybe 12-18. And “years” is out of the question.

There was a lot of crying that day. I’m a big man, and yet she and I cried on the floor of her bedroom. The sobs came easily, because why wouldn’t they? Also, I thought palliative care was the same as hospice care, so I was really angry at God. We had met our ideal partners. We’d just started thinking about what retirement might look like. We had committed to each other, regardless of our marital status. Our families had adopted us into the other’s family with such rapidity that we were both amazed. Life was just getting started. Yes, even at 50. This was a blow.

What I didn’t know about her is just how feisty and fierce she really is. At 5’2” (rounding up these days), she is a tiny human, as she likes to say. “Small but mighty!” are her watchwords. And so she dragged me upward out of the anxiety and depression that I sank into. What we did worked well for us; maybe it will help you, too, whether you’re the caregiver or the cared-for.

Mentally Dealing with the Diagnosis

Any time I asked, “How are you feeling?” she would respond with, “I feel well. I’m not anxious. I’m not worried. I’m a little annoyed.” and I would repeat each phrase back to her, “You feel well. You’re not anxious.” and so forth. It became a mantra. It was edited a little bit as time went on. She stayed annoyed for some time because, really? Returning lung cancer? After five years? For a never-smoker? Who wouldn’t be annoyed?!

To this day, we continue this practice. Sometimes we add, “And we’ll be OK.” We don’t really know that in the earthly sense, of course, but we have it on good authority that the long term—eternal, that is—sees us as being more than OK.

Denial Doesn’t Usually Work

The next step, of course, was flat out denial. Well, these are lymph nodes, after all, and she was sick, so isn’t it possible that it’s an infection and the lymph nodes are doing what they’re supposed to do? Her oncologist told us “No,” and the cardio-thoracic surgeon who was consulting with us at the time, and who had performed the lobectomy years before, spotted us a “Well, maybe, but highly unlikely.” The oncologist ordered a PET scan. She reported for that PET scan and we anxiously awaited the results.

In the meantime, the oncologist had ordered a stat biopsy of one of the nodes and an MRI of the brain, but we didn’t know about the MRI yet. Let me tell you on my good authority, you don’t screw around with the emotions of a cancer patient. Here’s how I know.

Don’t Mess with a Cancer Patient’s Emotions

We had arranged a family vacation to Pawley’s Island, South Carolina, right in the middle of a COVID-19 hotspot, for late July to celebrate Heidi’s 50th birthday. My parents, my sister and her family, and the two of us would be there. While we were waiting for the rooms to be ready, a scheduler called from the imaging center (not Hartford Hospital’s, but one that will remain nameless) and asked Heidi when she would like to schedule her stat MRI of the brain and a biopsy to be performed in four to six weeks.

When it’s the scheduler telling you that an MRI to detect brain tumors has been ordered (but not mentioned by the oncology team) and she can’t explain anything, and when it’s the scheduler telling you that your stat procedure won’t happen for a month or so, you tend to explode, but in the nicest way possible. You tend to ask why these orders contradict the ones you know about. You get very sarcastic and cutting. You begin tearing the scheduler “a new one”—in a nice way. You then begin to worry about why the oncologist has ordered an MRI of your head because isn’t the cancer in your lymph nodes in your chest and just what the hell is he looking for in your head that you don’t know about?

At that point, through anger and tears, you call your oncologist who can’t be reached because it seems he’s on vacation again (well-earned—we get it!) and the oncologist’s MA turns out to be the most helpful person in the world. Kudos to Kristan; she figured out what was going on and to make a long story short, the scheduler had no idea what she was talking about, the scheduler wasn’t supposed to have called the patient at all, and Kristan would have been able to help if things had gone right in the first place.

All was figured out when the MRI was explained off as standard procedure (though we didn’t understand until later) and the biopsy was scheduled for the day after we returned from vacation.

During our vacation, we prayed hard for an infection. Heck, we even prayed hard for COVID-19. Anything but cancer.

And during our vacation, the cardio-thoracic surgeon called and walked us through the results of the PET scan.

It was cancer. No two ways about it; it wasn’t an infection. It wasn’t COVID-19. It wasn’t an erroneous result for somebody named “Peidi Hartain.” It was Cancer. Again.

We cried that day, too, and we prayed for a miracle.

Why an MRI is Needed Even with a PET Scan

That didn’t necessarily make us feel better, but his explanation to us why the MRI of the brain was necessary did make us feel better. The PET scan shows the cells in the body with high metabolic rates. Cancer cells, which eat more food (if you will) and grow faster than other cells in the body, have high metabolic rates. So they show up as bright colors on the PET scan. The other cells that consume a lot more food in the body are the brain cells. The brain lights up like an orange Christmas tree! A ball of sun! A bright light! And now I completely understand why depression, which kicks the brain into overdrive, can cause weight loss! (It normally accounts for about 20% of the body’s energy use.) Looking for an orange tumor cell amongst all the orange brain cells is hopeless, like staring at the sun to see sunspots. (Don’t try that.) And so an MRI is needed to look for masses that are non-brain, e.g., cancerous, in the head.

However, we had some hope left, and we now hung our hats on the glimmer of hope that we had. Because of some other lab numbers that Heidi showed, the cardio-thoracic doc said it could be run-of-the-mill lymphoma, something that is somewhat manageable and has a pretty good prognosis with a lot of folks living five years or more. That’s still not great, but any time somebody tells you that you might have metastatic lung cancer, your assumption is that you’re going to die very much sooner than five years. (And you’d be right for the most part.) The only way to find out what it really is was to do a biopsy, and so a bronchial biopsy would be performed under general anesthesia unless… unless what? I truly don’t remember now because that was about ten years ago and I can’t remember what caused a deviation from that plan.

In any case, a needle biopsy ended up being ordered on one of the axilary lymph nodes/tumors. And so a day after we returned from Pawley’s Island, paradise of the Southeastern Seaboard, Heidi was in an exam room having a needle poked around inside her armpit while her sister and I quaffed a beer at a nearby restaurant.

Never Underestimate the Value of Family

She wasn’t my sister-in-law yet, but she was there for us both. She’d flown up that week to support Heidi and, by extension, me, through some of these more difficult events. Her presence was truly a godsend. Now, if your relatives come and all they do is sponge off you and lie about on the couch all day, maybe having your family come to support you isn’t the best idea. Having Heather here, however, was helluva good. She was calm, pragmatic, and helped us avoid the emotional pitfalls we ran into.

Pretty soon, we got those results, and the answer really was, as her oncologist had expected, mNSCLC. However, the biopsy would be sent out for what is known as “moleculars,” which is a shorthand way of saying “molecular diagnostics.” The moleculars examine the genetic materials of the sample to see if there’s something wrong with them that can be treated. The oncologist told us that day that the previous tumor was PD-L1 and ALK negative. Dammit. There go the most popular treatments including immunotherapy targeted at the PD-L1 gene. On the other hand, PD-L1 is present in more-aggressive tumors (as we learned from the Interwebs and reading many papers online), so maybe that’s not such a bad thing after all.

That day was not a good day for the people at the physicians group. Why? Here’s what happened:

We visited the oncology clinic after confirming via E-mail that the appointment would be face-to-face and not telemedicine. We were told, rather rudely, that the visit was supposed to have been telemedicine. The receptionist did confirm with Heidi’s oncologist (to be fair, a wonderful doctor and caregiver), that he would see her and announced to Heidi that “The doctor will see you after all.” It was a rude start to the visit.

The nurse who checked Heidi in was pleasant, and for that we are grateful.

However, after the visit in which the diagnosis was pronounced, the doctor took us to the checkout desk where the scheduler was clearly annoyed to have had her lunch interrupted. We were not greeted in any way. She finished what she was eating. We stood there as something happened on the computer. Still, no greeting or word from her. When prompted to set up a port placement, she was unable to answer Heidi’s questions in a way which did not cause Heidi frustration. We left that clinic with a most dissatisfied opinion of its clerical staff.

Clearly, the staff needed training in patient compassion. This clinic does not deal with runny noses all day; they deal with patients whose diagnoses are life-altering and life-ending. Their attitude should match the nature of their clientele. And if they can’t be bothered to interrupt their lunch to deal with someone who just had a Stage IV cancer diagnosis pronounced, they should have been fired on the spot.

Again, there were tears shed. There were prayers said. And as Heather has oft said, “Heidi, you can’t die yet. You haven’t pissed off the last person you’re supposed to piss off.” Ain’t over ‘til the small lady rings (and presumably pisses you off during the call).

During the visit, a treatment plan was put into place that matched what we had expected, namely chemotherapy. What we were surprised by was that the standard of care for mNSCLC included an immunotherapy drug: Alimta (a chemotherapy drug), carboplatin (a chemotherapy drug) and Keytruda (an immunotherapy drug targeted at the PD-L1 genetic mutation). That last one was the surprise, precisely because of its target, which Heidi doesn’t exhibit. But it helps—the trials say so, and, well, that’s good enough for us.

In the meantime, we got in touch with the Dana-Farber Cancer Institute, with our oncologist’s blessing, because if there’s something in the works, in a trial, etc., we wanted to know about it.

Thinking that we’d have the results of the moleculars back by two weeks after the biopsy (which sounded reasonable to everybody), we scheduled an appointment with DFCI and one of their Enormous Brains. (And by “we” throughout, I really mean “Heidi,” because she is super at taking care of these sorts of things. It’s a large part of her life’s work for BrightStar Care of Hartford, her company.) So we ventured north to Boston to visit the Enormous Brain.

Without the moleculars.

Yep, the moleculars were nowhere to be seen. But Dr. EB, a research oncologist specializing in thoracic cancers and who sees patients 50% of the time and researches 50% of the time, spent a good hour educating us about mNSCLC and his thoughts on the origin of this recurrence. His thoughts: for a non-smoker, a lung cancer well-removed, and over-the-top treatment of chemotherapy which was overkill to say the least, it had to be something genetic. He recommended that we go ahead and do a blood test that would reveal if there were any mutant genetic material floating around in the bloodstream. These random bits of genetic material get tossed into the bloodstream because aggresive, rapidly-growing cancer cells are, in my words, careless and messy, throwing DNA and RNA around and making a mess of otherwise-clean blood. The results of that test would take only 7-10 days; we weren’t sure how long it would take for the moleculars to return. It just made good sense.

We learned a considerable amount about targeted therapies at this meeting and it was clear that we should be really hoping for a genetic mutation that is treatable with a targeted therapy. Chemotherapy is a non-specific therapy and targets all cells which are fast-growing. That’s the cancer cells, but it’s also hair cells and lots of other cells that get killed in the crossfire. (Why it doesn’t kill brain cells, I have no idea.) Targeted therapies, on the other hand, work to attach themselves to the genetic mutation and somehow kill the cell or otherwise prevent its reproduction. They have some side effects, too, but they aren’t nearly as destructive as chemo.

To use Keytruda, or not to use Keytruda: That is the Question

Dr. EB also recommended that without the moleculars, we not proceed with the Keytruda for the first cycle of chemo. Keytruda makes lung infections more likely, and some targeted therapies also make lung infections more likely. Because Keytruda has a half-life of 26 days (meaning it’s in the body in large amounts for a considerably long period of time, with 25% remaining at the 52-day point and about 6% at the 104-day point) and because nobody’s sure if the risk of lung infection is additive or exponential, he said that if we used Keytruda, it might prevent the use of a targeted treatment if one were available. 

We agreed. He is Dr. EB, after all.

(To be fair to our local oncologist, I’m sure he’d reached the same conclusion. He’s a smart cookie.)

The best news of all, however inconsequential to her physical health it may have been, was that the three-drug soup prescribed is not so caustic as to require a port placement. What’s a port? A port is basically a piece of plastic that goes under the skin near the upper left of the chest, right about where your fingers rest when you say the Pledge of Allegiance (provided you’re not kneeling). It connects to the vena cava, a very large blood vessel that has lots of room for caustic drugs to dilute before really getting up against other tissues. When you go in for chemo, they poke a needle through your skin and into the port and deliver the drugs through the port into the big pipe. It’s a big convenience for the nurses and protects your veins and skin from the deadly (literally) drugs you’re receiving.

It’s also an emotional hurdle if you had one five years ago and fought to have it removed. It’s a symbol of the cancer’s return. It’s a touchpoint. It’s something you will fight to avoid if you can. And when you’re told that you don’t need a port, you rejoice if your name is Heidi. And that’s consequential to your mental health.

We wandered down to the phlebotomy lab and, as elsewhere, the people were kind and compassionate and willing to explain everything about everything, education seemingly part of their mission. A very nice lady poked Heidi’s arm nearly painlessly and drew the blood to be sent off to California for the testing. After that, we left for home.

Our trip home was subdued because we didn’t learn anything that was particularly promising. On the other hand, we hadn’t learned anything that was negative, either. We gained a little bit of hope in the blood test, learned about genetics and testing and targeted treatment. We also learned that Dana-Farber is a superior organization in every way to any we’ve encountered yet. That’s not saying anything about most of the individual people in the organizations we’ve encountered, but as a whole, these organizations pale compared to Dana-Farber.

Why I Would Go to Dana-Farber Cancer Institute Even if I had to Travel a Long Way

It was clear from the moment we were greeted by the parking attendant to the moment we left and were greeted by the other parking attendant that everyone at Dana-Farber was thoroughly aware that the patient and her family were there because they have a very serious illness, one which is causing mental stress, anxiety, fear, and other emotions which make coping with the myriad details of a complex visit difficult. They made every effort to make our visit as smooth as possible. Each person was efficient and effective in their roles, and yet each person we encountered was pleasant. As we left, we recognized that the pervasive atmosphere was compassion. Every single person we encountered was compassionate toward us. Though the news was no better than we had heard elsewhere, the staff around the doctor at Dana-Farber exhibited respect for the condition of the patient… and showed compassion.

Will the Waiting Never Cease?

After our visit with Dana-Farber, we consulted again with the local oncology group and set up a port-free chemo session. They agreed with Dr. EB that Keytruda would not be given for the first round and most certainly we’d have the molecular studies back sometime soon to determine what to do with the second round. They also agreed with him that a CT would be useful to assess the starting condition at the time of first round of chemo. That would give us a useful reference point to compare to when treatment is done.

Shortly after we spoke to Dr. EB the first time and had the blood draw, we had another call with him to review the results of the blood analysis. It showed almost nothing, with “nothing” being a distinct possibility. Remember that it takes an aggressive cancer to throw off enough genetic material to test? That they didn’t have enough to test is good news as far as we’re concerned. However, the results did say that there was possibly an RNA mutation, but the amount of material was so low that it was just below their threshold to call it a finding. So that report showed, essentially, nothing. And for the reason above, we considered that a good thing.

The local oncology team and Dr. EB are working well together. I do not mean to insult the local folks, either: they are danged smart and I make no comparison about their abilities to the folks at Dana-Farber. They’ve had to call the lab repeatedly to prod forward progress on the moleculars. They’ve had to answer the numerous calls we’ve made to figure out what next steps should be in light of changing circumstances. They’ve done a yeoman’s work in keeping Heidi on the right track. And it is clear that they do care. (I wish I could say the same about their support staff.)

However, the moleculars from the lab never seemed to be headed to us. It was now about five weeks after the biopsy was done, and everybody seemed to think that the results should be back. And yet we waited.

Meanwhile, the first round of chemo was administered without a hitch without a port, and Heidi was happy! Of course, after the steroids wore off, she crashed hard and was exhausted for about three days. We caught up with the oncology APRN the following week and listed off all the symptoms and were told, Yep, that’s normal. (Whew.) Things, overall, had gone pretty well.

The Waiting Ceases

We finally got the report back for the moleculars that day, too, six weeks after the sample was sent to the lab. However, they didn’t look all that great. Of the 44 DNA mutations tested for, she had only one, a PTEN mutation—and there’s no targeted treatment for that… yet. It’s an interesting mutation in that it seems to be present in a bunch of different cancers (including mNSCLC) and is a cancer suppressor. If yours is off, you’re more likely to have cancer cells running amok. And it’s hereditary. (Oh, dear, kids…)

Good news, though: initial studies have shown that cruciform veggies (e.g., broccoli, cauliflower, Brussels sprouts) have a compound which is abbreviated I3C that can, through a molecular pathway, turn that gene back on. Of course, to be effective, you’d have to eat six pounds of raw Brussels sprouts daily, so that’s not a likely solution. (There is an OTC supplement, but don’t go out and try it without talking to your doctor, of course! We asked Dr. EB about it and the problem with all of the studies so far is that they’re not in clinical trials, nobody knows whether it will help or harm tumor growth, and it might interact badly with the treatments you’re already on. So, Brussels sprouts in normal quantities, lightly sautéed in butter, please.)

Once we got that report back, we discussed it with the local oncology team and had it sent to Dr. EB with whom we had a third discussion the day before our wedding. (Yes, we got married. Heidi says I’m either brave or crazy. I just say that nobody ever talks about being sane in love and leave it at that.) During that conversation, we pointed out that the RNA results were strangely still pending. We also pointed out that the blood test showed a possible ROS1 mutation… which is an RNA mutation! In other words, there was a good possibly that there was a ROS1 mutation still out there but that the outstanding RNA tests didn’t show it yet. He was hopeful and curious in a very genuine way.

We held off on the port placement again (Heidi just couldn’t emotionally handle the port as a last resort yet) and forged ahead towards chemo round two. One week after our wedding, the local oncologist called and said that he had pestered somebody into giving him a preliminary result from the biopsy, eight weeks after the core sample. And guess what showed up?! Yep! She has a ROS1 mutation in her RNA! Yay! That’s one of the targeted treatable RNA mutations—of which there are only four tested for! He sounded genuinely pleased and happy for us because it is a big deal. The treatments available show an efficacy rate of 70% at slowing or shrinking tumor growth. That’s twice as good as chemotherapy, and some people live for years on these drugs.

Some.

But not all.

However, it’s still wonderful news. His recommendation was to continue with the second round of chemo because it would take a week to get the written report from the lab and then another week to get the drug approved by Heidi’s insurance. In the meantime, two weeks after when she would have round two administered would have passed, and leaving the cancer to do what it wants to for two weeks is not a good idea.

We called Dr. EB and he agreed with everything that the local oncologist said. His one hesitation was about round two, but after we explained why there was a two week delay, he agreed. His one suggestion was to get a second CT scan at the end of the 21 days following the second round so we know what the effect of the chemo is independent of the targeted treatment. At some point, it’s likely that the cancer will resist the targeted treatment, and it’s possible that Heidi’s in the 30%, so having an idea of the efficacy of the chemo is a good idea.

And so here we are. Heidi is ROS1 positive (ROS1+). And we’re learning all kinds of stuff about ROS1 fusions—it’s not really a mutation because some of the curly bits of the RNA have fused together at the ROS1 spot (i.e., normal RNA, just fused together where it shouldn’t be). And the more we learn, the more we can’t possibly believe that all of this stuff works and is self-repairing and so forth without a stronger belief in God. Now, we choose to believe in the God of the Bible. You may choose to believe in intelligent design. In either case, we both agree that this stuff is just too complicated to be random. It’s insanely complex. And yet… it… works….

We learned about a ROS1 treatment with a drug called crizotinib, the brand name of which is Xalkori. (I commented to Dr. EB that the generic names seem to be tongue twisters. He thinks it’s to make it more likely that we’ll call it by the brand name. I tend to agree.) Xalkori a Pfizer drug. And we will be investing in Pfizer because the daily dose is 2 capsules. At $320 each. A month’s supply is about $19,000.

Nineteen. Thousand. Dollars.

But good news! There are coupons available! (Not kidding.)

So remember we prayed for a miracle? No, we’ve not seen if this drug is effective or not, but ROS1+ is a 1% mutation of all non small cell lung cancers. So Heidi is one of about only 1,700 people annually for whom this drug would be useful. Wonder why it’s so high priced? (It’s Pfizer’s third-highest grossing drug.) Me too, but I have a good understanding of supply and demand, the economics of patents and research, and I’m not surprised that it’s expensive.

I am a little taken aback that it’s that expensive.

But we are both blessed with health insurance. And we have been blessed with each other and the support we’ve been able to give each other.

Thanks be to God.

We’ll continue to update my blog as we progress. I know this is a big brain dump, and you can see that it’s a bit of an emotional roller coaster. There is much left to come.

Resources

If you are a lung cancer patient, find a support group.

If you’re a caregiver, find a support group, too. It’s an emotional road. You’ll need your own Heather.

And donate to the American Lung Association. Please.

Lastly, if you’re ROS1 positive, check out the ROS1ders. This is a small group of people who are distilling a lot of deep science and drug info into regularly-updated summaries. Support them, too, with your time and talents.

Continue to Part 2

[Edited 9/11/2020 to clean up some punctuation, extra-long sentences, spelling (though I’m sure I’ve missed some), and such. WNE]