Tag Archives: terminal lung cancer

Six oh

I am sixty. Six omg I can’t believe this is true.

The first thing I said when I got up this morning was ‘Linnea, it’s your birthday. You’re still alive. Not sure how you do it, but you do.’

Gotta say, I didn’t think I was going to have an opportunity to get old. And so far, I’m loving it.

However it is all very bittersweet. Yesterday I spent time with someone who I care very much for. Someone who is young–too young–and who is in the last stages of fighting this disease.

And that breaks my flipping heart.

We’ve made significant progress when it comes to the treatment of lung cancer. More of us are living longer. However, the majority of effective treatments are still targeted therapies that are classified as inhibitors. By definition, inhibition restrains or restricts. When you are talking about targeted therapies, inhibition is almost always temporary. Cancer is an incredibly wily bitch; it finds a way around.

And sadly, medical research doesn’t operate at quite the same speed as wildly mutating cells.

It’s all quite complicated, actually. Regulations, incentives, the sheer enormity of the problem. However, from the perspective of the patient, it is actually absolutely straight forward. We want to live. And far too many of us are still dying.

So yes, I am happy to have this opportunity to turn sixty. It is a reminder of far we have come. But also how far we have to go.

xo

Deets

I am generally possessed of a mighty thick skin. Not a quality I was born with but rather one acquired through repeated injury. I don’t say this with any drama—it’s simply a fact. And I, being a scrappy survivor, have developed tools/personality traits to effectively protect myself.

However every once in a while something gets under my skin. When I logged onto Facebook this morning, another cancer survivor had characterized my cancer as ‘amazingly slow growing.’ I should have just let it go but I responded by saying that I wished my cancer did grow more slowly, before listing for her all the modalities of treatment that I have undergone since my diagnosis. And then I counseled her to be more sensitive when describing another’s cancer as amazingly slow growing.

For those who wonder what the fuss is all about, here is the synopsis from my most recent radiology report:

Surveillance for lung cancer status post left lower lobectomy. Sub-solid mass like opacities in the left upper lobe have increased in size and attenuation since the prior study as described.

Persistent and slightly increased groundglass and interlobular septal thickening in the basilar left lung, suggestive of lymphangitic carcinomatosis. 

Additional subsolid nodules in the left lung are stable or slightly increased in size compared with the prior exam. 

Slightly increased small loculated left pleural effusion.

First of all, the possibility of lymphangitic carcinomatosis. Now you don’t want to let those horses out of the barn.

Secondly, just for scale, the largest of my masses is now 4.4 by 2.1 centimeters. No small potato when one is talking about cancer.

So yes, I am darn fortunate that I have been able to survive for as long as I have. But I haven’t exactly been sitting around and eating bonbons as I’ve fought (yes, fought) rather tirelessly to stay alive.

There. Got that off my chest. Now if I could just get this other shit out of my chest I could get back to that box of candy.

xo

IASLC 2019 World Conference on Lung Cancer

So it gets better. Not only did I travel to Italy this summer, I also attended the 2019 World Conference on Lung Cancer in Barcelona, serving on a group panel addressing ways to improve clinical trials, along with my peer/good friend Janet Freeman Daly.

Janet is a scholar among advocates/activists and she presented compelling data. My territory is the more emotional piece, pulling on years of boots on the ground experience. I had no slides. My speech was written the night prior to our panel. I would imagine there was no presentation even remotely similar at this conference with 7500 attendees.

Of course, I was preaching to the choir as almost half of the people in the room were fellow advocates. Ideally, this message would reach a broader audience (I’m shooting for the plenary session next year). As it was, I received a standing ovation, some tears, quite a few hugs. And requests that I share my speech online, so folks, here it is.

*And no, I’m not a doctor. But I was tickled to be called one.

What would you do to stay alive?

Chances are, almost anything. 

If, as I was, you were diagnosed with lung cancer at the age of 45, you might have most of one lung removed, not by vats, but rather a good old fashioned lower left lobectomy, followed by four rounds of adjuvant chemo—a notoriously nasty doublet of cisplatin and taxotere. 

You would do these things because of your husband, your children, your parents, your siblings. You would do these things because the youngest of your children has not yet turned eight. You would do these things because, at 45, there is so much left undone. And you would do these things because you don’t just like life, you love it.

That desire to live might not diminish even as your cancer returns and metastasizes to your right lung. You might well hang onto hope right up until the moment you ask if it is time to get your affairs in order and the answer is yes—best guess, three to five months in which to do so. 

Dazed acceptance takes the place of desire as you say your goodbyes. And then something quite unexpected happens. You learn that the re-staging biopsy revealed that your cancer is positive for a newly identified oncogenic driver in lung cancer, an EML4-ALK fusion. 

By chance there is a phase I clinical trial for an ALK inhibitor at the very hospital where you receive your treatment. One other person has enrolled but quickly died, in part from side effects from the experimental therapeutic. 

You know that you are also dying. However, on this day you discover that you have not lost hope. The trial is a long shot but maybe, just maybe, it will extend your life by several months. Your greatest anxiety is that your decision to enroll may hasten your death. But you can’t not try, and so you do.

You end up being the 4th person in the world with non small cell lung cancer to take the first ALK inhibitor. 

Eleven years and two more phase 1 trials later, you are still alive. You have lived long enough to see your youngest graduate cum laude from Phillips Exeter Academy. In two weeks, he will enter his fourth year of study at MIT.

In November you will turn 60, and your oldest child 35. None of this was imaginable. None of this would have happened without both the opportunity as well as your personal decision to enroll in clinical trials. 

Your life is full and you feel abundant gratitude in regard to your good fortune. You are aware that for many, your continuing survival is a miracle.

However, you know differently. This was no miracle. It was a combination of medical science and much blood, sweat and tears. 

I succinctly describe my clinical trial experience this way: it has been my privilege and my burden. 

Since October 1 of 2008, I have spent more than a decade as a participant in clinical trials. First in human, early cohorts, all of them. Each time I’ve had approximately a 70% resolution of my cancer and all told, six years of stability. My quality of life has  been, for the most part, extraordinary. However, that is not to say there have been no side effects. Most have been manageable, but some have been extreme, from liver toxicity to cognitive deficits.  I have borne these and not let them get in the way of an incredibly full life. However, the challenges are not to be minimized. 

Every year I max out my deductible in January. Many are under the impression that clinical trials are free—in the trials I have been in, drug has been provided by the sponsor as well as the cost for occasional procedures—for instance, echocardiograms in my current trial. All other medical procedures have been billed to my insurance, which means I am paying the copay. And the non medical expenses—travel, lodging, meals, parking—have all come out of pocket. My pocket. 

Trials are time consuming—consuming in general. My marriage of 24 years ended six years ago—in large part because my then husband found our lives too cancer centric. The financial fallout of divorce has been that my own income is limited—with far too much of it allotted to my medical care.

The emotional burden of the ups and downs of literally living while dying has taken its toll on not just me, but my three children. Uncertainty has a permanent place at our table. 

And then there are the astounding number of scans I’ve undergone—not because they were clinically indicated but rather because they were mandated by the one size fits all protocol of clinical trials. To wit: even though my cancer, invasive mucinous adenocarcinoma, is confined to my lungs, I have now had sixty abdominal CT scans, ten of which were PET. More than one hundred spiral CT scans of my lungs, ten of which were also PET. 42 Brain MRI’s. And sundry x-rays, bone scans, full body PET scans in addition. This in an individual with highly mutable cells. 

Several years ago I requested that the scanning schedule be amended from every six weeks—not standard of care—to every three months. Not just for me but for every participant who had been enrolled for twelve months or longer. And that attention be paid to individual diagnoses. That someone such as myself, with no brain METS, should not be required to undergo such frequent brain MRIs. Keep in mind that in addition to being exposed to unnecessary radiation, I paid copays on those 60 abdominal CT scans and 42 brain MRI’s. 

When my request was ignored by the sponsor, I made the risky decision to become noncompliant, refusing to have anymore abdominal CT scans and also declining injected contrast with MRI’s of my brain, as I was concerned about the possibility of gadolinium retention. Sadly, a year later my MRI was in fact positive for gadolinium—what is referred to as a brain stain, so I now have heavy metal in my cerebellum—a finding with poorly understood consequences. 

Oddly, there has been a push to humanize the role of clinical trial participants, by euphemistically referring to them as partners. As I have written in a blog titled ‘Don’t call me partner’, this is not a partnership of equals, and in fact, is a relationship that at times is abusive. 

That’s right. I am grateful but also angry. Angry because this potentially abusive relationship is codependent. You need me but I need you too. Desperately. 

Therefore, there is nothing to be done but to work on this. 

I would begin by suggesting that there should be some sort of bill of rights or manifesto for participants in clinical trials. A sort of contract that would acknowledge, recognize and even honor the fact that the ultimate purpose of clinical trials involving human beings is not to advance science or to enrich shareholders—it is to address human suffering brought about by disease. 

Recognize that we are not truly volunteers. We didn’t choose this course, we were chosen. A terminal illness is a terrible thing and we all understand that desperate times call for desperate measures. Clinical trials are not some extreme form of community service—we are enrolling because we are hoping that our lives shall be extended. If our contribution helps others, that is a bonus, but do not make us feel that wanting to live should be anything but our primary motivation.

Healthy ‘volunteers’ in clinical trials are almost always compensated for participation. Why? Because they wouldn’t volunteer otherwise. And yet those of us with cancer are not only not compensated, we generally pay to participate, in the form of deductibles and other out of pocket expenses. In my more than decade of participation I have never even had my parking comped, a not unreasonable expectation as more frequent visits are required per protocol. Ideally, I, like those ‘healthy volunteers’, should be compensated for my time. And any argument that doing so might constitute inducement is ridiculous—I am induced only by my impending mortality. Compensation would merely serve to lessen my financial burden to some degree.

Remember, always remember, that I am a human being. And that when you describe me as either compliant or noncompliant I do not feel respected. 

Know that participation in a clinical trial comes with a certain loss of autonomy. Do not abuse this by favoring the collection of data over my individuality. If a scan or MRI is not clinically indicated, then do not expect me to get one just for the sake of science.

Be aware that not only must I qualify for a trial, I am always at risk of being booted. Whether it is progression itself or a comorbidity that develops once on trial. I had a terrifying scenario several years ago where it appeared I might have developed pancreatitis. When I called my oncologist her first words were ‘I hope it’s not pancreatitis as it would preclude you from participation in any other trials.’ and then she asked me to come in for testing. I refused. Telling her that I may be in a tight situation (I used saltier language) if I had pancreatitis but it was a tight situation with options. If I came in to be tested I would simply be in the tight situation—minus options. This sort of scenario should not exist. 

And lastly, realize that clinical trials are a social contract. Understand and honor my sacrifice in the same way you would a soldier. 

Which brings me to my final ask. 

A year ago I developed resistance to my third ALK inhibitor. In my years of participation in clinical trials I have collected not only side effects and bills, I also have a coterie of resistance mutations. Had it been up to me, I would have pulsed my treatment right from the start, as even to a layman, it made sense that if you take an inhibitor daily, resistance is inevitable. 

However, in this sense I was compliant. And now, eleven years after starting my first phase I clinical trial, I am at the end of the branch. 

There will likely be no 4th generation ALK inhibitor. Certainly not in time for me and perhaps not at all. Why? Because there is no financial incentive. What was 4-6% of those diagnosed with lung cancer has been cleaved and cleaved again by the time you get to resistance with a third gen. 

I am a veteran of these wars. An outlier. And yet, now I must live with the knowledge there is no next treatment.

It is likely that I have now been on this third gen ALK inhibitor longer than anyone else. I am one person. However, as an advocate and activist, I feel the weight of all those who are just behind me. And I ask, what are you going to do when they too develop resistance to a third gen? How will you tell a 35 year old with three kids that there is nothing else to do? 

It is my suggestion that as a part of this social contract, we should not be abandoned. It is a poor return on an investment, it is bad science, and it certainly is not in the best interest of humanity. 

Demand, as I shall be, that our government mandate some sort of umbrella clinical trial to study those of us who are outliers. Honor our contribution. You’ve helped bring us this far, now see just how far we can go. Do not leave us on the battlefield after we have fought so valiantly. Bring us home.

Thank you.

The relaxed hostess

Cancer crashed my party more than fourteen years ago. The guest from hell. Uncouth, unkempt, possessed of a nasty disposition and with no respect for boundaries. Lousy fucking company.

And then there was the matter of an underlying agenda: this guest intended to kill me. To say the ensuing relationship has been uncomfortable is an understatement. And all attempts to evict the interloper have ultimately proved unsuccessful.

Yep. Chances are cancer and I are in this for the long run. At times I think the only remaining question is which one of us is going to burn the house down first.

Now, with no shiny new weapon to pull from the arsenal, I have had a lot of time to reminisce about previous treatment modalities. Cutting, chemicals and more chemicals. In the process I have lost hair, teeth, toenails. My skin has erupted, my esophagus bled. Sometimes I have not recognized who I had become, inside or outside.

Throughout it all I have viewed myself as a warrior, my body the battleground. Fighting, always fighting.

A few months ago I decided that perhaps it was time to try another approach. I would listen to my body, talk to my cancer. “I go, you go,” I said in a reasonable tone. “But it doesn’t have to be this way.”

I’d like to tell you that my cancer perked right up, slapped itself on the forehead and told me it didn’t know what it had been thinking. Apologized for the selfishness, the nihilism, all that stress it had put us through. That now that it had seen the light, it was going to just pack up and go home. Mea Culpa.

But of course that’s not what happened. And I also discovered that my own sense of antipathy overwhelmed any sort of pseudo empathy I might be trying to pull off.

When all was said and done I realized that there was only one thing left to do. I would decide, yes decide, to simply ice cancer. Just like that. “Cancer, you’re dead to me.”

You know what? It’s working. My stress level immediately plummeted. Already familiar with the fact that not giving a fuck can be a super power (really truly) it simply hadn’t occurred to me to stop caring about cancer.

I had scans last week, a review two days ago. And even though the historical precedent has been that once progression starts, it just keeps going, I felt calm, cool and collected. I already knew. My cancer is stable. STABLE, Y’ALL.

We’ll discuss this further. But in the meantime, think about it. Pretty much everyone with cancer is stressed out all the time. 24/7. Can’t be a good thing.

What I’m doing now—deciding not to care—isn’t just some simple party trick. It takes determination and a strong, strong will. But the positive feedback was instantaneous once I figured out how to let go of the stress. Give it a go. Even if for just a few minutes or an hour or two. And then see if you can do it longer.

I am not cancer free but then again, I am cancer free insomuch as I am anxiety free. And I will wager that is bad for the cancer and good for me.

These are mine, this is mine.

Peter has been in Hawaii for the past week, studying the environment with his program at MIT. He has been sending me joyful photos of jungle, ocean, volcanic ash. Obviously he is in his element and it makes me oh so happy. I just hope he comes home to New England 😉

And August and Lily made it to Toledo, despite some momentary drama the morning of their departure. It was the day with single digit temperatures and when Aug hit the highway, his car started shaking violently. Fortunately I have THE BEST MECHANIC IN THE WORLD (J & R Auto Repair in Chelmsford MA) and Aug turned around and headed straight there. John (of J & R) took one look at the car and diagnosed ice in the rims and prescribed a good spray at the carwash as the solution. John is honest, smart, kind and a bit of a mensch–he sent that kid off without charging him a dime. ❤

Of course I’m missing August already and fortunately the feeling is mutual. He sent me this text from the road: “I miss you a ton mom. The last few months were some of the best of my life.” Swoon. And then Facebook gifted me with a reminder of the backpack I received from Aug last Christmas. There is a little clear plastic sleeve for name and address and August filled it in with this precious message:



Being a mom hasn’t always been easy but it has always been the best. My three kids have taught me more than anyone or anything else and I love them to the moon and back. I take nothing for granted and am so profoundly grateful that I have had the opportunity to see them grow into adulthood.

Thank you medical research. Keep up the good work 😉

Where do I go from here

It’s an interesting question contingent upon several prepositions.

See, I have a problem and the fact that it is a good problem (all things considered), makes it no less daunting. It would appear that I am going to live. Appear being the supposition here, as one can never be too sure. However, if the current trend continues, well, than I have at least a rather immediate future.

This is not something I planned on.

Nope. Stability is a concept I am only beginning to embrace. However, keep in mind, it remains a contingent, suppositional stability. Which is about the same degree of stability that one would experience sleeping in a tree.

Here are the basic facts. I am fifty-eight, almost fifty-nine years old. I am currently in fabulous physical shape but remain in treatment for advanced–aka terminal–lung cancer. That treatment has proved remarkably effective and although my cancer is not gone (70% response) it is gone enough. Better yet, I’ve had a sustained response to my current therapy–four years, three months and counting. The rub? At the moment, this is the end of the road for me–treatment-wise. When (do I dare say if?) this one fails, there is no other. Been there, done that as each time I’ve started a new treatment it has been with the understanding that there were not yet any others. Medical science has thus far managed to keep apace with my cancer but I’d be lying if I said it didn’t weigh on me–life with limited options.

So, there’s that. Cancer. And then there are the side effects of treatment. In my own case, the most debilitating have been the cognitive issues. When it comes to short term memory, I’ve got shit for brains. My own children were skeptical of the severity of my issue. That is, until my son August tried to teach me something. It took his repeating directions countless times and finally writing it down as well before I caught on. This concerned him enough he shared his experience with his younger brother and now I think they both have a little better understanding of what I face.

And although I am not nearly as anxious as I once was (perhaps an inadvertent blessing that goes with loss of short term memory), I am incredibly worried about finances.

I may be one of the few people with terminal lung cancer who does not qualify for disability. This is due to the number of years that had elapsed (stay at home mom) between my last paycheck and diagnosis. Alimony is my income; in an amount insufficient to actually get by and so each month my credit card bill steadily grows. And those checks stop arriving fifteen months and three weeks from yesterday.

I have started reading the classifieds looking for gainful employment. Unfortunately, my own work history is heavy on waitressing, with some other odd jobs mixed in. And although my work in advocacy should qualify me for something better, I am terrified that my short term memory issues are going to make any job difficult to maintain.

Take a deep breath. These are good problems to have.

I

can

do

this.

The lung cancer blues

I was a miserable child. As in, I was miserable; a good deal of the time.

As a ward of my parents, I felt a good many things to be out of my control. However, with careful observation it became clear to me that I was in charge of my personal happiness. And I set about making certain that my own disposition became–through much effort–a sunny one.

This has served me well. Certainly, it has made me more likable but it has also impacted my outlook on everything.

Even cancer. Yep, when I was first diagnosed I look at my odds (not very good) and decided that it was going to be hard, but that I could do this. As in, I had the skill set (that sunny disposition being part of it) to give this a go.

And so I have. But of course, I never could have guessed that I’d be at this surviving thing for such an extended period.

It’s a blessing. And a curse.

There was a sweet little op ed in the NYT’s today about the good in taking things for granted. Sadly, that is a luxury well beyond my reach; an innocence lost long ago.

No, my life is fraught; every frigging moment. Not by choice, but rather circumstance.

Thirteen, going on fourteen years of living with a disease such as lung cancer. For the bulk of that time, well over a decade, I have also lived with the knowledge that my cancer was terminal.

My cancer has remained stable for an extended period. Somnolent, resting, biding its time. I feel good/strong. Sometimes I even pretend that I can let down my guard–just assume I’ll be sticking around. Those are the good days.

But then it hits me. All of it. Like a ton of bricks or a platinum doublet. I am alive but alone with an uncertain future on every front. Grateful and terrified all at the same time. Sad and sometimes angry too. Anxious about my friends because even if cancer’s not breathing down my neck, it’s breathing down theirs.

I was right; this is hard. Really hard.