And they call this coverage

$8.80 a puff

Boys and girls, the price you see on the package of Advair (thirty day supply) is my frigging copay. Well, it would be if I’d actually taken that little inhaler home with me.

Yep. I’ve got health insurance again, as mandated by the laws of my country. Coverage that is designed for people like me who are lower income. Coverage that barely covers anything.

First, there is the fact that I had to get this insurance two months before the end of the next enrollment period. I had already met my deductible with my last policy but now I’m back to ground zero and unlike my previous policy, this one aims to meet said deductible in one fell swoop.

And….I can’t. I simply do not have the money to pay $528.11 for an inhaler that will last me thirty days.

I’d been hoping against hope that my health would hold until the end of this calendar year so that I could avoid the necessity of maxing out my deductible. Not. I just had scans and a month from today I am scheduled for a needle biopsy, a surgical procedure. Historically, every single needle biopsy I have had has resulted in a partial pneumothorax or collapsed lung. And that means an overnight in the big house; aka the hospital.

So I guess there is no avoiding hitting that deductible in every category. And then it will be January and I’ll start all over again. Hopefully the tires on my car will hold, because income taxes come due in April.

I’ve said this before but in case you did not hear me, I will say it again. It is not tenable.

This is health care in America when you are caught between poverty and prosperity. My income qualifies me as lower middle class and yet, with a chronic illness, far too much of that income goes toward medical costs.

The stress is unrelenting. And, unlike veterans of other wars, there is no agency to make certain that in recognition of my service as a clinical trial participant my medical needs are met.

It’s crazy. All of it. Lousy health insurance. $528.11 copays. And the fact that Pfizer is now poised to make beaucoup bucks off of the experimental therapeutic that I, one of the first trial participants to ever take lorlatinib, (three people in each cohort–does escalation phase–I was in the third) helped bring to fruition. And here I am, unable to pay for an inhaler.

Really kinda blows, doesn’t it.

The weather in here

Dark out here but there’s a light on somewhere

Sometimes when it rains it doesn’t just pour, it tsunamis.

Hell of a couple two weeks. Fortunately, weathering/withstanding is something I am very practiced at. The fact that I can do a three and one half minute plank is less about muscles and more about the ability to push past pain.

Life has been having its way with me again. Loss, progression and what feels like betrayal.

There is someone I love dearly. Have, from the moment I first set eyes on them. Longer, really.

Someone I would walk through fire for. Someone I would eat shit and die for. Someone who chose this week of all weeks to hurt me in a way that is beyond comprehension. Someone I must finally walk away from.

I had an abusive childhood. Certain aspects of my marriage as well. One might assume this has made me more sensitive to emotional pain. In reality, it has set my threshold higher. A useful trait, as it turns out. But it also means that I have to self monitor. Just like my neuropathic feet, it is necessary to keep a close eye on my heart.

At the moment, that organ’s a bit bruised, as is my liver. Too much of one thing has led to too much of another. Time to back off on that as well.

Last night I had an edible. My sons were both here and we were watching a horror movie when the power went out. Oddly, the little closet gallery across the hall from my loft was yet lit and we gathered there with our neighbors. It was a bit of a party atmosphere and I was having fun taking photos when I noticed that the wall was the only thing holding me up so I crept off to bed.

I love the way cannabis lets my mind simply unspool. It feels like a big brain massage as my thoughts do the leading and I simply follow. Once I was asleep my dreams were extraordinarily vivd and at one point I thought there was a man kneeling at the foot of my bed. He was in distress, arms flailing, and I realized he was struggling to breathe. I wasn’t sure if he was choking or if, like me, he had something deep in his lung that could not be dislodged. Nonetheless I leapt into action, (literally) as I began to pound the air/his back in my sleep. It was frightening but also a reminder that bystander is never my natural mode; I will always act. And if I’m drowning and you are too, I shall do my damnedest to save us both. However, if in doing so, you attempt to pull us both under, I will eventually make for shore alone.

Such is my will to survive.

Bitch is back

When I awakened yesterday morning my first thought was that I would be getting bad news at my scan review later that day. And then my second thought was that if I was truly experiencing progression, Alice was already both aware of and on it.

Two for two.

Like some pernicious weed, my cancer is cropping up again in the same exact spots it always does. Nothing drastic yet—interval thickening and slight increase in size—but the concerning part is how quickly I have become symptomatic. That and the fact that I have now acquired resistance to three ALK inhibitors, with lorlatinib being the biggest hammer in the tool box and supposedly covering most resistance mutations.

Slice of me

So I’m up a bit of a creek. Last night I got a text from my youngest in which he said he was so sorry and then ‘I’m scared.’ I wrote him back saying that I was also sorry and scared but that I was strong and Alice is smart and we will figure this thing out.

At the moment I am staying the course on lorlatinib. We did discuss going up in dose but Alice felt I would experience no true therapeutic advantage while increasing troublesome side effects.

I will scan again in eight weeks and Dr. Shaw is looking into whether it would be safe to perform a needle core biopsy. One area is too close to the diaphragm and the other is inconveniently located underneath my left breast. The last time I had a biopsy it was straight through my boob (as uncomfortable as it sounds).

Hopefully that will be possible though as it could help us figure out possible avenues. Discussed so far have been radiation on the area furthest from the diaphragm and a combo of lorlatinib and some other agent.

Mostly I am sad. Feeling fine (not so very long ago) was absolutely amazing. I’m on a roll with my art/writing/gym/dating and I realize this is going to put a major crimp in things. In short, logistically life is going to get a hell of lot harder and I’m not looking forward to it.

Per the bigger picture, I’m trying to keep my head from going there. Focusing on what’s right in front of me is going to help me maintain my cool and my courage. And I’m gonna need them both.

However, I’m not in this alone. The outpouring of messages after I made a post on Facebook confirming progression has been astounding. As I left my appointment yesterday Alice and her PA Jen Logan both hugged me hard. And then Jen looked me in the eye and said ‘We’re going to fight this together.’ I know she means it.

An ill wind

I have health insurance again, as of five days ago. Trial back on track with scans last week and labs and a review tomorrow.

However, my relief at regaining coverage is tempered by some unaccustomed anxiety.

For more than a month now my upper lobe—all that remains on the left side—has been making a crackling noise when I exhale. I know this noise and there’s nothing good about it. In addition, I have experienced an occasional cough and some shortness of breath as well as some streaking of blood in my sputum.

Best case scenario, this is an infection. But the fact that two rounds of antibiotics have not knocked it down is not encouraging.

This wouldn’t be my first time at the rodeo but damn, I’ve gotten nicely accustomed to an easier ride. Of note, lorlatinib was just granted FDA approval. This is the third time I’ve been in a first in human trial where the experimental therapeutic has gotten approved for prescribed use. A good feeling, that.

And now for a stable scan.

Every breath we take

November is national lung cancer awareness month, thirty days devoted to increasing public perception of our shitty disease. And for those who are counting, breast cancer, in October, gets thirty-one.

But then, seriously, WTF with these days and these months? Does anybody really believe that white ribboned apparel is flying off the shelves? And even if it is, that it truly makes a difference to anybody but the t-shirt vendor?

I guess 160,000 people dying annually isn’t attention grabbing enough.

You know how many lung cancer months I have personally observed? 163, the number of Jan/Feb/Mar etc… since my own diagnosis with lung cancer. I, like most people, never gave lung cancer a thought until it smacked me hard upside the head.

Therein lies the problem. How do we entice others to care about something that seemingly has no impact on their own lives?

I understand that a day and a month devoted to lung cancer awareness is well intended. But to me, an increasingly cranky iconoclast, it actually trivializes my experience.

What I want (and no, I don’t believe it is too much to ask) is for people to be aware of lung cancer every single day and month. To understand that not only is it important to care about those who have already been diagnosed, it is also critical that we all start thinking about the air we breathe. Because that, my friends, is the one thing that all of us with lung cancer share. We inhaled–exposing the tissue in our lungs to harmful particulates and carcinogens in the atmosphere surrounding us. 960 times an hour, with the average person taking between 17,280 and 23,040 breaths daily.

So yes, awareness of lung cancer should be as secondary to daily living as breathing in and out. Because baby, that’s risky business. If you’ve got lungs, you can get lung cancer.

And that’s enough to make a person care.

Christian Nataline.

‘Energy like you has no beginning and no end. It can never be destroyed. It is only ever shifting states.’

My dear, dear boy. Nobody ever fought as hard as you did. Superhuman, that. You wanted very badly to stay and honestly, we all thought you would.

Eight years of friendship but so much more. From the moment we met that connection was there. With a twenty year difference in age, I was old enough to be your mom and in many ways you felt like one of my children. As we each moved from trial to trial, I was Batman and you were Robin. I talked you off the wall more than once and you did the same for me. For eight years we never went more than a few weeks without being in touch and once you moved to Florida, we would spend hours on the phone.

We were astronauts who had gone to strange places others could only imagine. But you—you went further than fathomable. Beyond fear, beyond pain, beyond suffering. It was both terrible and beautiful to witness—your hungry love of life and what you were willing to endure in order to hang onto it.

And a wonderful life it was. Karen, Christina and Ellie. Your three gorgeous girls.

I was on my way to see you when I learned that you had passed. Fortunately the woman on the bus had a big bag of tissues. When we got to Logan I ended up messy crying on the floor of the Jet Blue terminal. Made a scene, I did. A blubbery, righteous, raw demonstration of unbridled grief.

You are no longer suffering and those who love you will love you always. These are the two things I hold onto but man, I gotta tell you. I am gutted.

However. We both embraced those battle metaphors because we knew what it was like to be on the front lines. You—I heard that just last week you were asking about chemo. Christian Nataline, you raised the bar.

Just know this. I will never, ever stop fighting. And I will keep my eye on your beautiful family.

Rest now.

Love, Linnea

 

*Panache Desai

And the overcome

Because we all need a can-do story now and again.

So. If the part fourteen years have taught me anything, it’s how to power through. Not saying that such an approach is 100% effective but then again, sometimes scrappiness and un utter lack of hesitation is key.

My son Peter and I have our inside version of the joke is on the universe (not us). It goes like this: ‘It’s impossible, now let’s do it.’ Oh, and we have. Both alone and together.

A couple of prime examples. When I began my first clinical trial in October of 2008, I was three months into ‘you have three to five months left to live’. In other words, officially a dying woman. I also lived up past Lake Winnipesaukee in New Hampshire, a good two and one half hours from the hospital without traffic. I drove myself both to and from the hospital in the same day for all of my trial visits. And yes, I was married at the time and it wasn’t until much later that I would feel angry about the fact that I made those trips alone. However, more importantly, I did it. And, of note, I am no longer married 😉

Getting Peter into private school was a monumental effort as well. I was going through chemo and I would lay on the couch as he wrote essays and then when I was feeling better, we would go on tours and interviews. When he got into Phillips Exeter Academy it was an immense sense of accomplishment. And when it was time for him to apply for college, we repeated this routine, as I would go and hang out in his room at PEA while he wrote, just to offer support. Of course, it was his own academic prowess that got him into MIT.

When I left my marriage, I was post chemo and pre lorlatinib, my health again failing. Some close friends helped me move the heavier items but I drove the 26 foot truck myself—a first. The day it was due to be returned I had one more load and a seemingly impossible deadline but I simply told myself that failure was not an option and I got the job done.

Of course, some situations truly would be impossible without assistance. I own a little airstream trailer, and the parking lot here at the lofts is being hot topped. That meant I had to move my trailer but when August and I tried to hook up the hitch, we discovered the mechanism was rusted into place. One of my neighbors suggested that if we got enough people, perhaps we could simply lift the the hitch onto the ball. So, the next day, we did just that. Six people lifted a 3500 pound trailer by the hitch, gently placing it on the ball of my truck as I deftly (yes, deftness was mandatory, failure not an option) inched it into place at just the right moment. Not probable, but possible.