So Long, Progression-Free Survival

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It dropped.

That other shoe.

Let’s pull in a slow-motion sequence here and see if we can capture the physics of that moment – the transformation from the shoe in the air all the way to the shoe on the floor, in a series of freeze-frames.  Let’s watch it tumble and roll over, grommets flashing metallic in front of us, then hidden as the shoe rolls, flash of shoelaces whipping the air, lashing out into space.

That’s exactly how it fell.  Slow motion.  First there was the odd entry in the Michigan Medicine portal, the note written by the physician’s assistant.  My follow-up email to my oncologist, Dr. Gadgeel.  His reassuring response, and the promise of a phone call.  The subsequent phone call, an odd conversation in which two people who respect each other spoke at cross purposes.  The suggestion that we move up the date for the next set of scans.

Confirmation of a growth in those scans. A subsequent PET scan revealing growth of a nodule in the left lung.

For the first five years that I survived after the diagnosis of my stage IV lung cancer in November of 2012, I belonged to a group of cancer patients who enjoyed the privilege of progression-free survival, known in most PubMed articles as PFS.

According to the Dictionary of Cancer Terms provided by the National Cancer Institute (NCI), progression-free survival is “The length of time during and after treatment of a disease, such as cancer, that a patient lives with the disease but it does not get worse.  In a clinical trial, measuring the progression-free survival is one way to see how well a new treatment works.  Also called PFS.”

More simply, the term suggests that the treatment agent or intervention halting the growth of metastatic cancer has remained successful. The treatment has kept the cancer from progressing. The cancer is not developing, growing, or moving forward. It is progression-free. The patient’s state of survival, then, is called progression-free survival.

Since metastatic cancer is cancer that has spread from one site to one or more other sites of the body, the cancer bears the potential to progress to several areas at once.  Therefore, it’s important to note that when an individual with cancer lives in the realm of progression-free survival, the cancer has been halted in all areas of the body.  In my case, that meant in the lungs and in the bones.  The cancer was still there; a patient with stage IV lung cancer is not cancer-free or in remission. When one is in the state of progression-free survival, the cancer is present, but not progressing.

I like to describe my cancer as being in solitary confinement within my body, in whatever nooks and crannies it inhabits.  That term, “solitary confinement,” oddly enough conjures up a positive association for me – one of watching Burt Lancaster on black-and-white television with my parents as he starred in The Birdman from Alcatraz.  Sitting with them and watching the images flicker on the screen provided me with one of my earliest moments of intellectual and artistic appreciation as well as one of my first twinges of social justice.  As a result, when I think of my cancer in solitary confinement, I imagine Burt Lancaster and his birds inhabiting in miniature form all those areas of my body marked by the cancer.

I don’t remember when I learned the term “progression-free survival,” but I appreciated having a term to describe my cancer situation.  It’s difficult to describe one’s cancer to someone who may not be familiar with the disease in all its variations.  Many people think that cancer sufferers are actively undergoing chemotherapy or radiation therapy, or they are in remission.  But cancer mutations are on the rise as scientists begin to understand the mechanisms that cause cancer to grow and as researchers develop drugs to address those growth patterns.  Being in a state of progression-free survival while taking a daily, oral targeted therapy pill is not the same as being in remission, although the two states may look very similar to the beholder.

Progression-free survival for the stage IV lung cancer patient imposes a heavy psychological burden and a proliferation of quandaries when it comes to making short- and long-term decisions.  While I am ultimately quite thankful for those progression-free years, there is clearly an irony here which researchers and oncologists may or may not talk about at their conferences and conventions in between appointments at their clinics in which they counsel dying patients. For the patient, progression-free survival may mean that while the cancer is not progressing, the patient’s life may not be progressing either, particularly in the case of a stage IV diagnosis.   Cancer may have arrested the patient’s development as a human being.  The patient may be like a bug cast in amber, trapped, unfulfilled.  Preserved but immobile. Behold the progression-free patient, unable to move forward for any number of reasons but often because it’s difficult to make decisions when you don’t know what the future holds.

Well-intended individuals point out that none of us knows the future.  That statement is quite true, but stage IV cancer patients on targeted therapy know that there is not presently a cure for their disease, which will eventually progress, unless a cure is found.  And if the cancer strikes while one is still in the midst of one’s employment years, the decisions about employment alone, separate from the burdensome issue of paying for cancer treatment, can be nearly impossible to address.

At the time that I left my progression-free survival state in late November and early December of 2017, I was too busy mourning the deaths of an aunt and my brother-in-law to mourn the loss of my PFS state.  Yet certainly, the change affected me.  Not only did I have to deal with developing cancer in my lung; I lost the term progression-free survival and the handy acronym that went with it.  Some might find that second loss laughable in comparison to the first, but given that I am a person who values words and, to a lesser extent, labels, and given that I’ve struggled mightily with identity issues over the course of my life, I found it sad to let go of my trophy status.  PFS.

As fortune would have it, I quickly found a new term to embrace, a new home for my cancer situation.  While travelling with my husband on one of his business trips in the weeks following my cancer’s progression, I began Googling information about the stereotactic body radiation therapy (SBRT) I would be undergoing for the apparent growth in my left lung when I returned to Michigan. At an earlier session with the University of Michigan Hospital Radiology Department I’d been trained to breath and hold my body still.  When I returned, I would receive three treatments of 18 Grays (GY) each, three intense and powerful blasts of radiation directed at my lungs, for a total of 54 Grays.  This treatment, the literature said, worked well for individuals already undergoing targeted therapy with oral drugs, especially people whose cancer had progressed in minimal ways – oligometastatic disease.  As we drove to catch our plane on our return trip to Michigan, I said to my husband, “Hey, I’ve got this word with the prefix ‘oligo.’ The only word I know related to ‘oligo’ is ‘oligarchy’ as a form of government, but I can’t remember what it means. Remind me.”

“Government by the few,” he said. Another search of the National Cancer Institute’s Dictionary of Cancer Terms revealed a definition for “oligometastasis,” which is defined as “A type of metastasis in which cancer cells from the original (primary) tumor travel through the body and form a small number of new tumors (metastatic tumors) in one or two other parts of the body.” I had a new way to describe myself and my condition. I now had oligometastatic cancer or oligoprogressive disease. I lived in a new realm of cancer.

Now we must fast forward to February of 2019, a full year after I received SBRT for my cancer progression.  In the intervening time, I ignored this blog.  I’d lost family members.  In fact, even as I prepared to receive my radiation treatment, my mother-in-law slipped away. We mourned her.  We buried her ashes.  My husband and his surviving brothers cleaned her house.  I continued my studies in medical billing and coding.

Two women I’d met with the EGFR mutation died in those intervening months, their cancer having progressed in a manner much more ferocious than my own progression had been.

In those twelve months from February 2018 to February 2019, I had some odd scans, the radiologists’ reports noting new scarring, presumably from the radiation, and speculating on what the new observations meant.  In December of 2018, stressed and fatigued and confused about my health, I was convinced I was dying, and I was prepared to join my relatives and the women whose cancer type I shared.

But the latest scans in February granted a reprieve.  The radiologist who read the report for those scans didn’t see obvious signs of progression.  My oncologist remains convinced also that at this moment in time, my cancer is not progressing, in my lungs or in my bones. In other words, these scans reveal that even though I no longer occupy a state of progression-free survival, I seem to be progression-free within my oligo-progressive state.

If this seems confusing, I have captured the nuances perfectly.  I am confused also.

Who’s on first?

Where are we here? We have a dropped shoe, a movie allusion to Burt Lancaster and The Birdman of Alcatraz, a comparison of my cancer to time spent in solitary confinement, and an allusion to Abbott and Costello and their famous baseball word-play skit.

Disorientation reigns.

I am confused, but grateful.  In the fall of 2018, when I experienced some heavy stress, my body reacted, and I thought I was dying.  The problem with cancer is that if you have it, you are always looking for it, waiting for it to peek around the corner. Yet sometimes other non-cancerous things affect your body, changing your thyroid numbers, your labs in general, your energy level, your ability to concentrate. So how do you know what’s happening to your body? How do you read the signs?

I am determined to stay abreast of my health information, study my disease, and understand its nuances.  I believe strongly that our nearly broken medical system will be fixed only when we can train individuals to understand their health and disease and not view physicians as magicians who hold the secret elixirs that will save us.  Our health model needs to be based on shared information and collaborative decision-making.

In the very end, maybe I can’t read the signs, however determined I am to try.

My oncologist says there aren’t any studies I can look up on PubMed to help me chart the future and understand how much time I have left.  He reminds me that we zapped the supposed growth in my lung; we didn’t biopsy it first.  Perhaps it wasn’t cancerous?

I am confused, but grateful. Yet angry as well.  I keep living; other people are dying.  How do I deal with how that makes me feel?  How can I be truly grateful for some circumstance of cause and effect out of my control that has me winning the lottery while others lose? I can’t make sense of it.  I want to be like Burt Lancaster.  I want to find peace and contentment in the birds while I’m living in solitary confinement.  I want to value my time on the planet and appreciate its beauty, find a measure of design and pattern in its making.

I feel I should embrace my current status with oligoprogressive disease.

Or perhaps I should go outside the realm of cancer terms and acronyms.  Malcolm Gladwell wrote a book called Outliers which bears the subtitle, The Story of Success.  He begins the Introduction with two definitions for the term “outlier:”

“1. Something that is situated away from or classed differently from a main or related body. 2. A statistical observation that is markedly different in value from the others of the sample.”

I have not been successful in the world that places value on artistic achievements, economic prosperity, physical prowess, or extraordinary vision and acumen.  But perhaps I can claim success in this small arena: staying alive beyond statistical expectations.  It is not anything I’ve accomplished as a result of my own efforts; it is a feat that simply occurred.

Lou Costello finds enlightenment as he nears the end of the baseball monologue “Who’s on First.” He figures Bud Abbott’s patter out; he understands the names and positions of the players.  He is no longer a dupe, frustrated and confused. He has achieved success.

I want to understand my disease and its progression, but perhaps as an “outlier,” I can claim only success, not understanding.

Outlier.

 

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