Tag Archives: stage IV lung cancer

Stone baby

Night shadows

Life threw me a little curve last Saturday. It started with a sharp pain in my right side. At first I thought it was a muscle cramp but it went zero to sixty as it wrapped around my back and moved up between my shoulders. Two hours later I realized I was in some trouble when I tried to go to the bathroom and almost fainted.

Living in a community has some solid perks. We have a loft-wide email and I sent out a plaintive message: Help. Within five minutes a number of neighbors had responded. One called 911, another agreed to watch Kumo.

In the meantime I had messaged my oncologist, who made it clear that she preferred I come to MGH rather than the local hospital. Once the ambulance arrived they told me they weren’t able to transport me to Boston so two of my neighbors, Ann Marie and Bill, pulled their car up to the entrance of the lofts and then drove me straight to the ER at MGH.

My daughter Jemesii and son Peter were already there when we arrived. And man, did those two advocate for me.

I was in the most serious pain I’ve ever been in (with a spiral fracture of my ankle, a ruptured ectopic pregnancy, and vaginal delivery of a 10 lb 4 oz baby for reference). Jem and Pete manned the call button and pestered the staff until I got my first dose of morphine and a handful of relief. When the ER doctor came to examine me he asked what I had been doing just prior to the pain starting. ‘Eating popcorn’ I said. ‘Buttered?’ he asked. Well, of course.

He then said, ‘I am almost certain this is a gallbladder attack.’

I could live with that. The problem is, none of the diagnostics (labs, CT scan, HIDA scan, x-ray, ultrasound, colonoscopy) were confirmatory.

Fortunately, by Tuesday (day four) the pain and nausea began to ease. That night Peter came to hang out with me and he was reading to me about what it was like to pass a gallstone. It suddenly occurred to me that that morning when bathing (after a little accident secondary to prepping for the colonoscopy) I had found what, in retrospect, was almost most definitively a gallstone.

Well, medical science likes clear hard data so the official diagnosis is no diagnosis. But I haven’t any doubt now what happened. In fact, when describing the pain, I said it was like trying to pass a cherry pit through the head of a needle. And once the morphine kicked in, I joked with my kids that at least labor resulted in something good, like a baby. Not, as it would turn out, a stupid stone.

However, even though I could have done without this particular adventure, it was a formidable bonding experience for me and my adult children. In the face of crisis, we all responded quickly and without hesitation. In the ER my son and daughter took turns holding my hand and only left just before midnight because I shooed them out.

This will not be the last storm we face together, and as a trial run, I’d say we all got an A+. Yea for team Linnea.

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.

Hurry hurry hurry up

So. I need a 4th generation ALK inhibitor. Stat. And I’m not encouraged by the fact that it’s been almost five years since lorlatinib, a 3rd generation ALK inhibitor, became available in clinical trials.

And although no one would argue that the 6.8 years of median overall survival that is now a statistical probability for ALK+ patients is a good thing, I can’t help but believe it may have negatively impacted the urgency to identify further ALK inhibitors.

Over here in Linnea Land we are feeling that urgency thing big-time.

Today was scan reviews aaaaaaand……just as I expected the news was not cheery. Continuing progression. Not rapid and yet decidedly of the rampant variety. Upon further questioning, an estimated three to six months until lorlatinib is not going to be enough. Which would be okay if there was in fact anything else.

Symptomatically, I knew as much. A nebulizer is being delivered tomorrow and I will once again become an albuterol junkie. Breathing is some necessary shit and I need to get mine back on track.

Me.

Last weekend I was in Colorado for my niece Mesa’s baby shower. That, and a much needed break from my own reality. Yesterday morning I sat in this egg shaped chair, my sweet spot, and said to my sister Bink: ‘I’m just going to stay. I mean, why would I go?‘ Bink and her husband Greg brought me a smoothie and a latte each morning and a martini every evening. The life, y’all. But my own reality show was calling and I boarded that airplane back to Boston anyway. This morning I was at Yawkey, not eager and yet ready to receive that reality check, gently delivered by Goddess number one, Dr. Alice Shaw.

Sweeeeeet spot. Notice the empty smoothie glass. And that Colorado sunshine.

After an appointment with Goddess number two (my social worker, Mary Susan Convery), I walked to the Boston Common to meet a date because even when, maybe especially when the shit goes down this hard, you need to just keep on living. As loud and as large as life will let you. And sometimes, even larger.

The gorgeous Boston Common.

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

LOVE

I feel it. Coming in from all sides. Cradling me, like a nest around an egg. Buoying me, like the waves beneath a boat. Holding me tight, like one big group hug.

There’s something flipping wonderful about having a personal motto that is ‘all people are my people’. I love me some people. By FAR my favorite animal, and that’s saying something, as the animal kingdom is rife with coolness.

The thing is, when you love other people, they tend to love you back. Magic, that. I mean, really, truly, some special sauce. And the best thing is, you can spread that shit around.

So here goes.

I LOVE YOU I LOVE YOU I LOVE YOU.

xo

Personal skinny

I had my every six week oncology appointment yesterday. Echocardiogram, labs, and a consult with Dr. Shaw’s nurse practitioner Jen Logan followed by a visit to my social worker.

It was an opportunity to double back and clarify whether or not the way I perceive my current situation is accurate. And, it would seem, I hold no illusions.

In a nutshell. My cancer is yet ALK+, and therefore partially responsive to inhibition with lorlatinib. However, the two newly acquired secondary mutations are preventing the lorlatinib molecule from binding as completely as before. Hence, the resistance. And–unfortunately–these acquired mutations are not actionable; there is no effective inhibitor for either of them.

Fortunately, my cancer is not aggressive. Nor is it indolent–but after fourteen years, we have a pretty clear understanding of how fast it grows.

Simply put, barring any new developments, I figure two years.

That can feel like a little or a lot, depending on your perspective. And as I have already wrapped my head around a much shorter time frame (3-5 months) I can do this.

However, it is also important to remember that although I am talking about a probability, possibility is not out of the question.

To this end, Jen assured me that Dr. Shaw is reaching out to both chemists and researchers urging them to come up with a magic molecule. It could just happen.

If it doesn’t, we can try a combination therapy. However, unless there is some not yet identified synergistic effect, it is unlikely this approach would be successful for my increasingly resistant cancer.

Worse comes to worse, I could return to chemotherapy (this would be the third time) in an effort to abate symptoms and possibly stabilize the cancer.

As we finished talking about possible scenarios, Jen asked me if there was anything I was particularly scared of or worried about.

I told her that I was sad but not afraid. And still hopeful. As for worries, two things. I’m not crazy about the way I’m going to die. I’d like to remain calm and I understand that not being able to breathe is going to make me feel panicky no matter how much self control I exercise. But my biggest worry is my three kids. They are all grown-ups now (something I am so grateful I got to experience) and I know they’ll be fine but we’d all prefer to have their mom hang around.

It was hard but also good, to speak of the future and the potential lack thereof. Jen asked me how I keep my cool and I told her it was time and practice. This is not my first death rehearsal.

xo

Medicine should not be a luxury good

First, for those of you who are starting to shift in your seats, I have not lost my mind. Rather, I have come to a place of clarity. Truly.

I have done my due diligence. Put in the hours. Decided that just being polite (ie: expressing gratitude and playing along nicely like a well mannered advocate) is not going to cut it.

Nope. People are dying out here and I am one of them. Raising awareness? I haven’t got time for that. And, frankly, I question the actual value. It’s simply not enough to make people aware, we need to make them care.

Care not just about lung cancer, but also about core values. I mean, how did we come to a place where the primary incentive for developing drugs is financial?

Think about it. A pill is not a diamond—it’s just some powder encased in gelatin. And yet, because this system is so incredibly screwed up, the pharmaceutical industry is able to justify charging thousands and thousands of dollars for a months supply. Why? It goes back to something referred to as intellectual property. Essentially, justification for recouping investment. And, of course, reaping profit.

Well, I have to tell you that as a working artist, I don’t base the prices of my artwork on a concept as nebulous as intellectual property. If I did, my paintings would be priceless.

The incentive for developing new drugs should be, simply put, to ease human suffering. In fact, let’s drop incentive and instead call it moral imperative. And once developed no drug should be so dear, so ridiculously expensive, that those who truly need it cannot afford it.

Illness should not be viewed as an opportunity; healthcare as an industry. Which is not to say that researchers, providers, insurers, or those in the pharmaceutical business should work for free.

Appropriate compensation is justified. Over the top salaries such as those paid to these pharmaceutical CEO’s are not.

The Great Dictator was a satire made by Charlie Chaplin In 1940 and I am going to close today’s diatribe with this. A political vehicle, it condemned both fascism and antisemitism. The movie concludes with a speech that remains transcendent, and which is pertinent to far more than politics. Please take a few minutes to watch. And then think. Really think. About reason.

Let us fight for a world of reason. A world where science and progress will lead to all men’s happiness.

Mr Chaplin