Tag Archives: ALK+ lung cancer

Another dawn, another day

A story that bears repeating. Pun intended 🙂

I found this greeting card yesterday at the local Market Basket. It was meant as a birthday card (who knows why) but I shall co-opt it to my own purposes.

This is not the downedest I’ve been (made up word intentional as well). Nope. Almost seven years ago, post progression on my second ALK inhibitor, I was getting chemo yet again. And although I was married at that time, I truly felt alone. 

However, I’m pretty adept at turning inward for the things I need. And what I needed more than anything else was for someone to have my back. Literally and figuratively, as I desperately wanted to be held.

And so I turned to my imagination. Tried out some animals in my head (yeah, I’m a weirdo, I know). A wolf, a lion, and then a bear. Bear seemed just right. Kinda cute and cuddly looking but also potentially lethal. Just what I was looking for in a pal.

In my mind, bear was holding me. Big spoon, to be more explicit, those sharp claws resting gently on my forearm. ‘Bear,’ I said. ‘If you will just stay beside me while I’m going through this shit, I’ll make a deal with you. If I die, you can eat me. But if I don’t, you can’t.’ I could feel the bear’s breath on the back of my head. Bear didn’t budge.

Right there and then I decided bear would be my spirit animal. 

Now and again, I call bear back. Although as time has gone on, I’ve needed him/her less and less. When I’m feeling strong, it’s a lion I imagine. 

Having bear show up yesterday was a reminder that I’m not alone. Now there’s a chance that bear is hungry. But a deal is a deal and I’m not planning on being dinner.

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.

Rise and shine

Because what else would you do.

This, my friends, is necessity/habit/resolve at its leanest.

As long as I have the opportunity to do so, I intend to make the very best of each and every day. Right now that means prepping for one particular outcome (getting my affairs in order) while staying open to the possibility that those efforts are in fact premature.

It’s a delicate balance, this living while dying shit. A bit of a challenge, if you will. But–strangely–one I am embracing. It doesn’t get more clear headed than this. I am rapt with attention. As honest with myself as I have ever been. Taking it all in while wrapping it all up.

Acknowledging my inevitable destination (if not now, later) while savoring every moment. Truly present. Unafraid. Aware.

Clarity.

I am at an interesting place. Truly.

Part of this comes from an overriding sense of it’s time to close up shop-ness. A nice way of saying, I might be dying.

That. But also (and this is the scenario I much prefer), all that hard work is paying off. I’m talking about personal growth and my quest to be a better, saner version of myself. Not long ago my son Peter, our little mensch, made the observation that I was at my most reasonable. I realize that sounds like an incomplete sentence but I knew exactly what he meant. It’s a high compliment and just like my favorite word ok, does not overstate.

I’ve been through a little bit of hell in this lifetime of mine. The good news is there is always a potential benefit to struggle. Think of it as stairs versus escalator. They both get you to the same place but one gives you a bit of a workout, thereby building muscle.

I am strong in body and in spirit. And also brave enough to regard myself with compassion but not charity. This is thread the needle time. And if I want to hold it all together I need to lighten the load. Let go of what is not essential. Revel in that which is.

Reach. But also maintain reason. Rise to the occasion.

Eyes

wide

open.

The heart is a muscle

And you damn well better use it. Even if—sometimes especially if—it hurts. Love is the heavy lifting when it comes to this little pump. Love, love and more love.

Heartbreak? It’s real but, in the same way a tree requires wind in order to put down deep roots, a heart can do with a good gale now and again. Yes, really. Loving and losing is our greatest fear. But that is also what makes love so very precious.

The hardest part of living with a disease like lung cancer is the loss. If you make the decision to establish connections with people who are facing the sort of survival stats we have, well, you need to understand from the get-go that death is going to be a frequent part of the equation.

It sucks, and sometimes it overwhelms as well.

I asked my oncologist, Dr. Alice Shaw, how she dealt with losing patients. Her response was that she viewed her role as a thoracic oncologist as a privilege. That caring for someone (in all senses of the word) as they faced extraordinary circumstances was an honor.

Her response struck me, because it is exactly the way I feel. Privileged to love so very many. Honored to share this fucking journey. And in awe of the fact that my heart–although at times so very heavy–has only grown stronger.

Life is hard, and avoiding that reality is not going to make anything easier. Nor is letting your heart go all flabby, just because you’re afraid of giving it a workout. Use it or lose it y’all. Live. Love. Heart, eyes and mind wide open.

xoxoxo

Bits of me: an update

I got a call from Alice (Dr. Shaw) last week with some news per my molecular testing. As luck would have it, I was trying out a new edible (delicious, weed flavored lollie) and was starting to feel the effects. I probably should have left my phone untouched but when Alice calls, you pick up.

So I did. And…I was pretty flipping stoned so trying to make sense of what she was telling me (while also doing my darnedest to maintain decorum) took a lot of effort. Going over the conversation in my mind the next day, I wasn’t quite sure I’d understood correctly and so I emailed her, fessing up as to my state of mind at that time and asking for clarification.

I didn’t hear back from her until Monday. In the meantime I had requested that she prescribe an antibiotic as my left lung has been really boggy and my energy level exceptionally low. Obviously it could be my cancer but I was hoping that my symptoms might represent a concurrent infection. So Alice called to discuss and this also provided that opportunity for clarification.

I heard what I thought I heard, which is basically this. Evidently my biopsy was contracted and paid for by the sponsor of my trial, which meant that they also ‘owned’ one of the core samples. Another went to MGH, another to research, another was used to attempt a mouse model of my cancer.

As my tumor is highly lepidic (lace like in its spread) it is difficult to biopsy. And, as it turned out, the samples that Alice had access to actually had no viable cancer cells for molecular testing. So she asked the sponsor if she could have some of me back and they–graciously–said yes.

The hope is that this last sample will hold the holy grail and will provide some information useful to guiding my next treatment option.

If it doesn’t, we might have to consider another biopsy. That is, unless my friend the mouse (sorry little guy, I had no idea) grows my tumor, in which case the mouse will be biopsied.

In the meantime we must rely on how I am feeling in combination with a scan two weeks hence in order to assess the speed at which my cancer seems to be progressing. Given the change in histology, there is the distinct possibility that it will now be more aggressive. I hoped there might be a silver lining here, as more aggressive cancers are typically more responsive to chemotherapy, but Alice did not feel that would be true in my case 😦 Always trying to look on the bright side, I am.

Oh–and at the end of our conversation on Monday Alice asked, on behalf of one of her other patients, about the steps required to apply for a medical marijuana card. Discussing this all later with my nurse practitioner (who found the entire episode highly amusing) I told her that given the fact I was able to help Alice, we could consider my personal research as community service. 😉

And, on another bright note, I am feeling significantly better–I believe the antibiotic was exactly what I needed.

xo

ps: check out this great Health Stories Project article about my friend and fierce fellow advocate Andrea Borondy Kitts. I get to play a small cameo 🙂

Threading the needle

So. For me, this, right now, is the most difficult part of dealing with my own cancer. The mind fuckery of waiting. 

My friend Tom Monks replied to a previous blog with a comment that could be a little Haiku poem:

Waiting for results
Waiting anxiously
Waiting patiently
Waiting ……..

Yes. As I remarked to Tom, waiting is such a part of this journey they even have designated spaces for it: waiting rooms.

Unfortunately there is no such space in your head. Bills come due, plans are made, the Holidays happen with or without you. 

It is such an exquisite balancing act. Talking down the fear, the angst, the worry. Staying positive in the face of a level of uncertainty that is, at times, almost incomprehensible. Making myself walk and go to the gym regardless of the fact that I already feel a physical diminishment. Rather, going explicitly because I do. 

Getting my warrior on even as I look around me with ever greater tenderness; I love this freaking world. Readying myself to battle an enemy who I am familiar with in a way that borders on contempt, and yet still at a loss as to how to go about it.

Trying to be at peace while simultaneously preparing to wage war. 

Threading the needle.

xo