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Working it

Last week I spent two days at pharmaceutical companies in Cambridge MA (a mecca for pharma) describing my personal experience with cancer and clinical trials.

As an advocate/activist for lung cancer, I continue to represent the viewpoint that those of us in clinical trials should be treated with deference and respect. That words such as compliant and noncompliant should just go away. That we be compensated for our time just as healthy volunteers are. Perhaps most importantly, that no one lose track of the fact that we are human beings, who are enrolling in medical research not because we want an advanced degree in community service, but rather because we are hoping that these experimental therapies will extend our lives. As people, it is our right to assume that we will not be subjected to a plethora of non clinically indicated testing–we are more than our tissue. That we are pleased that our contribution will help others but that it is not and should not be our primary onus. We, like everyone else, wish to live. And we want to do so with dignity and respect. The current model of more blood, more sweat, more tears, more money has got to be realigned. If it is, recalcitrant issues like accrual and disparity will be addressed as well. Win win.

Blue in the face I am, repeating this message for so long now. However, and this is important, I am beginning to feel heard. The emphasis on partnering with patients—more an aspiration than a reality—means there is far greater interest in learning from patient experiences. ‘We are sentient beings’, I remind my audience. Unlike the white mice who are our direct mammalian predecessors when research moves from in vitro to in vivo, we can communicate. ‘Talk to us’, I say. Listen. Learn. Stop making it so damn complicated. Make us true members of the team and treat us like the astronauts we are.

In September I will have the opportunity to travel to Barcelona as faculty for the annual meeting of the IASLC. I will once again be discussing my experience in clinical trials. Patient as partner; and faculty. It has taken a long time and we have far to travel yet, but progress is being made.

Keep talking.

Dichotomy

A message from an email address I did not recognize. Cryptic, it said only this: ‘He will not last much longer.’

I had been tasked with walking the neighbor’s dog. She had requested that I message her once I had done so and although I had walked the dog, I had forgotten to send an email.

My first thought was that the message was from my neighbor and I responded accordingly. But it bounced right back, undeliverable.

And then I began to wonder. ‘He will not last much longer’ could have a very different meaning in my world.

My neighbor has been apprised that all is well with her pet. I, however, am now on edge and ruing the fact that I am not more meticulous when it comes to recording contact information.

I am also reminded of how close the mundane can be to the extreme, and life to death. How we can use the same language to reference two very different things. And how this is both comforting and disconcerting.

Dichotomous.

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.

Oh dear hearts

Eleven ounces and no larger than a clenched fist. In my own case, shifted to the left, post lobectomy. When I roll over I can feel it, right there, underneath my breast. Beating, beating, beating.

Blood in, blood out. Breath in, breath out. Pumping, inhaling, exhaling. Pulsing; without pause.

Our little workhorses, heart and lungs. Flesh, muscle, vapor, fluid.

Animated tissue that is our emotional core. Breath can be taken away, a heart broken; we feel it right here, in our chest.

Today, a heaviness. The weight of those who have been traveling the same path but for whom the journey has now ended. Called home, as it were.

I ponder the possibility that my weighty heart is in stark contrast to theirs, which is now light. That I am holding them here, in my heart yet, but that dying is a letting go. Maybe even a sort of euphoria.

An end to pain but also a new beginning. A rolling back into the scrum that is all of life. Unbound. Unburdened.

But always loved.

On being human

Twofer day as it turns out I have a lot to say and my dog Kumo’s not interested.

So. Online dating. In September it will be two years since I jumped into this arena. For the most part I have had a truly positive experience. Got badly burned once but after a little pause I got right back at it.

I have learned so very much about the human heart. Their’s and mine.

Along the way I have met a number of extraordinary men and women–I am gender agnostic ;). Some have remained friends and for this I am truly grateful. It makes it all feel more civilized somehow.

For the most part I have approached the dating game like a school yard. No standing on the sidelines–instead I’ve gone out and played with little concern about getting hurt. If someone was not that much fun or didn’t play nicely, I moved on.

Of course, I have come at this with a rather considerable disability. Telling people that ‘oh yeah, I have stage IV lung cancer’ has taken considerable courage and, with time, increasing finesse. I’ve learned how to spin it so that it sounds like a positive. However, I am only too aware that a terminal illness isn’t an advantage.

Online dating, under any circumstances, is not for the faint of heart. At times it resembles a contact sport. Yesterday I got knocked down hard. Maybe, just maybe, it had nothing to do with the fact that I have lung cancer. But I understand only too well that if it’s between me and someone who is hale and hearty, well, the choice may be only too obvious.

Today I am feeling both sad and a little bit bruised. In need of a hug. And validation. I recognize that it is not an easy choice–stepping into my life. But I am (and I have to believe this) absolutely worth 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.