Tag Archives: attitude and cancer

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 ūüôā

Throwing shade

Just go away, you sticky little bastards.

I talk to my cancer, and that was this morning’s heartfelt greeting.

Yes. After years of hardcore warfare, my body the battle ground, I’m trying another approach.

Not a surrender, not a truce, but rather one in which I attempt to understand where the enemy (that would be cancer) is coming from. Not go high, go low.

It’s such a bizarre concept, my own cells run amuck. Unlike a virus, which can jump hosts, when I die, my cancer dies. Lose lose. Total annihilation.

Of course, it’s wrong to assume that this is not an end unto itself; The End. I mean, we all know this planet’s getting crowded. Of course, in this particular case, it sucks to be part of the solution.

I also think that part of the genius of DNA is the possibility for error. A consistent state of stasis is one big drag. Given the rate at which DNA replicates, errors of transcription offer fresh possibilities. Mutations allow life to evolve but they certainly can wreak havoc on an individual organism.

Which brings me back to my morning conversation. At this point I am at some sort of personal ground zero. Not emotionally (I am fine, really fine) but rather at a loss per how to address these errant cells of mine.

As captain of this ship, I can’t help but feel that a mutiny is under way. “If my body goes under, you go with it.” I tell these rogue cells. “Your ways are self serving and short sided. By gobbling up everything, you shall kill us all.”

Of course I see the parallels—what we humans are doing to the earth is not so very different than what my cancer is doing to me.

“What’s the point?” I say. “Why can’t we all live in harmony?”

These little bedside chats are my attempt to stay reasonable. But cancer is beyond reason. If I am to survive, I’m gonna have to fight–probably dirty.

Hey cancer, nobody likes you.

Cancer, well, cancer don’t care. And that’s the flipping problem.

Getting the joie back in the vivre

I’ve been on drug (LDK378) again for over two weeks now and my liver enzymes look great. Business as usual, but with a less than subtle change; it is increasingly obvious that my formerly sunny attitude has lost some sparkle.

Sustained stress can be a real buzz killer, and we are attempting to address several sources of anxiety on the home front. However, even as the potential for greater serenity becomes a reality, I am aware that something else is missing.

Somewhere along the line, between work and worries, joy has been neglected. The Merriam-Webster online dictionary defines joy as such:

1
a : the emotion evoked by well-being, success, or good fortune or by the prospect of possessing what one desires :  delight  b : the expression or exhibition of such emotion : gaiety
2
: a state of happiness or felicity : bliss
3
: a source or cause of delight

As I read these words, joy seems very far away indeed. Although relieved that I could stay on trial, I cannot shake my unease as to what is next. With scans every six weeks, and automatic expulsion from the trial once statistical progression has been reached (20% by RECIST standards), I am unable to settle.

It has been my intention to channel the underlying angst I am feeling into proaction; I am staying very busy, with particular focus on researching and realizing some opportunities for Peter. Last night David expressed gratitude for my hard work, and to have his recognition felt good.

However, even a flurry of productivity isn’t always enough to keep sadness at bay, and on those occasions when depression simply flattens me, I grab a book and head to bed.

Pema Chodron, a Tibetan Buddhist nun, is the author of several books in which I found great solace following my initial diagnosis with lung cancer. I am reading those books again, starting with¬†When Things Fall Apart–Heart Advice for Difficult Times. The following paragraph offers apt resonance:

“Things falling apart is a kind of testing and also a kind of healing. We think that the point is to pass the test or to overcome the problem, but the truth is that things don’t really get solved. They come together and they fall apart. And then they come together again and fall apart again. It’s just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy.”

The word joy shines like a bright jewel at the end of that passage. Regard the company it keeps; grief, misery, and the somewhat pedestrian relief. All mixed up together.

I think, perhaps, I have become preoccupied with fixing things. In a rush to identify what is broken, my perception has become selective. Seeing what is wrong, I am missing what is right. It seems obvious, and simple really.

But it’s not. Life is complicated and so am I. However, a determined student, I find myself ready and willing to take my lessons when and where they come. I shall start by welcoming joy back to the table; to let wonder and delight be part of the conversation again.

Beauty and the background

Trying to stay out from under the weather

Yesterday school was cancelled and we did our best to stay snug in the house as a blizzard roared outside. ¬†More inclement weather was brewing inside, as we’ve all fought a virus off and on for several weeks now. ¬†I’ve developed a cough over the past few days, and ever since my diagnosis, it is hard for me to view this symptom as benign. ¬†In addition to worries about recurrent cancer, (always part of the background noise), we are now anxious about H1N1 flu. ¬†There has been no shortage of hype regarding this illness and its potential to burrow deep into our lungs. ¬†What there has been is a shortage of vaccine, and despite my continued queries, I have been unable to secure a dose for any one of us. ¬†You would think that people with lung cancer might be in one of the early tiers, but that is simply not the case.

Anyway, what we are dealing with is likely just a garden variety virus. ¬†In addition, the snow petered into sleet last night and today the sun is shining. ¬†I always find it easier to have a positive, or sunnier, outlook when that is the case. ¬†My attitude is something else I no longer view as inconsequential or benign. ¬† When I was initially diagnosed, I was frightened, angry and depressed all at the same time. ¬†I didn’t even try to fight these feelings. ¬†They, in fact, felt like a totally justified response to the set of circumstances.

Justified or not, once I got all that sadness and rage out of my system, it was time to move on.  My dark mood evolved into dark humor, as I once again felt the necessity of laughter.  Eventually, heeding the advice of my oncologist, I sought counseling and began taking an antidepressant.  Both were extremely helpful to me.  At a certain point I felt I no longer needed either the medication or the counseling.  However, when it was confirmed that my cancer had spread to both lungs, I needed no urging to return to both practices.

You see, I really want to do whatever I can to promote my survival. ¬†I take my medicine, I do my best to eat well and to keep moving (excercise when possible, but just keeping busy when it’s not) and I pay a lot of attention to what is going on in my head.

I read a really interesting quote from the book The Survivor’s Club, by Ben Sherman. ¬†He said, “The twin enemies of survival are fear and inflexibility. ¬†Fear is demotivating and paralyzing. ¬†Inflexibility means that you don’t adapt to the new reality.” ¬†Part of my new reality is living with a terminal illness. ¬†I really need to be at the top of my game so as not to let that paralyzing fear get the best of me. Having my head in a good place is going to make a big difference when it comes time to weather the storm.