Results tagged “Cancer” from Bill's Words

It's Called "Scanxiety"

|

(This is part 7 of a series. You can read the previous part 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!)

(This is part 6 of a series. You can read the previous part 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

(This is part 5 of a series. You can read the previous part 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

Waiting

|

(This is part 4 of a series. You can read the previous part 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.

On The Cusp

|

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

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

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

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

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

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

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

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

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

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

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

|

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

We went to Jamaica.

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

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

The trip was a marvelous high.

Except that one time.

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

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

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

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

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

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

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

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

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

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

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

Continue to Part 3

The Roller Coaster That is Cancer

|

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]