Tag Archives: stage IV lung cancer

This is what stable looks like

NINE. That is the number of times the word stable appears below: 🙂

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.

Profanity and profundity

At the age of ten I possessed a diary; red, covered in naugahyde, and secured by a lock and key. Its primary function was as a repository for each notable expansion of my vocabulary. Wonderful words like twat, that curled my tongue and piqued my imagination.

My classmates were one reliable resource, but I also scoured books that I pulled from my parent’s shelves. A quick study, I became incredibly adept at skimming until I got to the juicy parts.

Although I understood the need to be discreet per my prurient interest, it never occurred to me to be ashamed. I was curious, and frankly fascinated by not only what was being described, but the words themselves. There are so very many forms of human expression.

I also grew up in a strict and fairly repressive household, those books on the shelves notwithstanding. It would take a good long time before I became comfortable enough to simply be myself. Rather a bit of a randy (turning an adjective into a noun for my own purposes).

Or, as I was described (to my delight) by some young women: ‘dirty but elegant.’ A sentiment recently echoed by my friend Kate B: ‘so regal but can still tell a person to fuck off.’

My self description would be dignified but profane.

Megan Rapinoe just publicly apologized for using the word fucking. ‘“I stand by the comments that I made about not wanting to go to the White House, with exception of the expletive,” she said. “My mom would be very upset about that.’

Now I hear her. My mother would be upset if she heard me speak. However (and I am not representing a franchise like Megan is and my mother is deceased), I do not feel the apology was warranted.

I just made a presentation to GE where I used the word fucked three times. It is possible that some in the audience felt offended, but fucked belongs in my narrative. It describes actual words I used (communicating to my oncologist) and at the time seemed like the most expedient, honest and (yes) elegant way to describe how I was feeling.

What we refer to as ‘swear’ words are valid and time proven forms of verbal expression. And, to be honest, I don’t really understand how people can find them offensive.

Cancer offends me. And if a dirty word helps me get that point across, well then I will damn well utilize it.

xo

And these are life lessons

So. I want to have a little chat about love and will. Love first.

The last five years have tested my heart in ways I never imagined. My interpersonal relationships, once tied up in a tidy package called family, totally unravelled in the summer of 2014. My mother died several days after I took my first dose of lorlatinib. A month later, I was served with papers and my divorce moved from somewhat amicable to highly contentious.

The initial side effects of lorlatinib (I entered trial in the third cohort, dose escalation phase) were unanticipated and horrific. Arthritic neuropathy so severe I awakened one morning to hands that felt like blocks of wood. Hallucinations at night, a sense of disorientation and unreality during my waking hours. Emotions that were both unfamiliar and impossible to modulate. An inability to recall much of anything including wide swathes of the past. And my short term memory was totally fried; I could no longer think in a linear fashion and became incredibly disorganized.

I was alive but a friggin mess. Struggling with the details (cooking, paying bills, getting through that awful divorce) while also adjusting to a totally different lifestyle.

Eventually I began to revel in my freedom and the fact that I was feeling physically strong again. Sadly, my increased irritability and lack of inhibition meant that I got into arguments with far too many people. Some would come to understand that this was beyond my control, others have yet to forgive me.

It was, at best, an imperfect life. At times I was incredibly sad. But I would drag my ass out of bed every single day and go outside and walk. Sometimes for miles and miles, taking in the (also imperfect) world around me.

I was learning about unconditional love. I didn’t need to be cancer free, my relationships didn’t need to be shipshape, my home could be in disarray. I loved life and eventually came to truly love myself as well. Before long I realized that simply being ok was enough. More than enough.

And of course while I was being schooled in unconditional love I was also coming to understand the role of will. There were times (many times) where I thought it was all too much. One crisis would be followed by another and I was dogged by depression. However, I began each day with ‘I’m alive, I’m alive, I’m alive’; my form of litany and a sincere expression of both wonder and gratitude. I also kept walking–convinced that being physically strong was one way I could take back some control.

Eventually my brain began to heal; old memories like a field that had been scorched but now sending up fresh shoots. And just as I was growing stronger physically, all the trials and tribulations were building emotional muscle as well. When I would go to the gym with my son August he would encourage me to always push harder. ‘It’s not going to help until it hurts’ he would say. Oh how true; how applicable to life itself.

So here I am. Once again facing the unknown and yet, as prepared as a person can be. If will alone could keep me alive, I’d be immortal. It can’t and it won’t but I have no doubt that a strong will is only a good thing. And life? Well, as my love is unconditional, it shall not disappoint.

This is life

It occurred to me some months ago that one of the you can’t win for losing aspects of cancer is the accompanying stress. A diagnosis, progression—just living with this shit—it’s all incredibly anxiety making. And you know what? That is to the cancer’s advantage, but not to ours.

I am certain stress has such a deleterious impact on our immune system that it exacerbates malignancy. Yup. Cancer really has the upper hand as it not only fucks with our cells, it fucks with our heads as well.

That is, if we let it.

Cancer may kill my body but it will never get my spirit. I have decided, yes, decided, that I’m just not going to let my progression get me down.

Crazy maybe, but so far, so good.

To wit. The week before I travelled to Italy (trip of a lifetime!) I went on six dates. That’s right–seven days, six dates, five different people. And I found a place to live.

The three weeks in Italy? Could not have had more fun. Ate a ton of pasta, drank way too much wine, and had gelato at every opportunity. Walked a minimum of six miles each day and actually lost weight. Also wrote and submitted an abstract as I am heading to Barcelona in the fall as faculty at the next IASLC annual meeting.

I hit the ground running upon my return, as I have begun to pack for the upcoming move. I’ve already been on two dates (one the night after I returned) with two more before the week ends. On Friday I will be presenting at Harvard Medical School and on Monday I fly to NYC to speak at GE.

My cough reminds me of what is going on in my chest but determination is keeping me from dwelling on it. The goal is to stay strong enough to live with my cancer until the next effective therapy comes around.

And in the meantime? I am living large. Over the top, unrealistic, and totally blissed out. Not a bad way to go. Wherever it is that I am heading 🙂

An atheist in Italy

That would be me.

Although I am very open about my lack of belief in or adherence to any religious doctrine, I also don’t focus on it or make it part of my general discourse.

No need to, from my perspective. I am firm in my disbelief. And just as I won’t try to talk you out of your viewpoint, I would prefer that others not try to talk me out of mine.

I am, however, very generous when it comes to religion. Again, as long as you don’t step on my rights, I am always open to learning more about and even experiencing the things that are important to others.

Cathedrals have always drawn me–particularly the notion of sanctuary. And not only are they often architectural marvels, houses of worship are home to much precious art. However, visiting a place of worship is not a religious experience for me. My awe is strictly secular.

In addition to churches and cathedrals, my friend Marc and I have been making the rounds of the museums. Last Thursday we went to Museo Galileo, where the Medici collection of scientific instruments is housed.

Museo Galileo

Atheism is not to be confused with belief in nothing. This atheist believes in love, life, death, art, being in the right place at the right time, and a whole slew of other marvelous (and some not so marvelous) things. And, of course, science. Observation, experimentation, empirical evidence. All in a quest to better understand ourselves and the world we live in. This is my belief system. This is the source of my joy.

Patients talk about Clinical Trials

Couple of my friends/fellow panelists shared this video on facebook and I felt I probably ought to do the same. This is from last spring–thank you Bonnie Addario for inviting us to participate and share our experiences and viewpoints. Together we are moving that needle.