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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.

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

The undertow

My son August and I were leaving the gym two nights ago when we heard a commotion coming from a white panel van on the edge of the parking lot. The interior was lit and the door on the driver’s side was wide open. Someone was yelling and as I glanced over I saw a young man on the narrow strip of grass between the lot and the woods. Oddly, he was hopping up and down, in addition to hollering.

Aug turns to me and says ‘Let’s go, I don’t want to get involved.’ Honestly, at first I thought that somebody might be getting a blow job (yes, I’ve seen that on my walks around town before) but it quickly became clear to me that this guy was in duress. Aug dialed 911. Another young man, a kid really (turned out he was 20) walked right over to the guy who was freaking out to ask him what was going on. I later learned he worked as a police dispatcher, and so knew exactly how to respond. I walked over too and told him we had called 911 and he said we should ask also request an ambulance.

When I walked back over to where the van was the young man who was freaking out was trying to pull his shirt off. He was crying and yelling and puking and kept scratching at himself and talking about how much he was itching (I would later read that both the itching and vomiting are a reaction to heroin). He was holding his belt in his hand and I am sure he had used it to tie off. He kept saying something about ‘Seamus’ and how he was throwing up inside. He also kept apologizing and said they had just come from the hospital and he produced a bottle of prescription anti-nausea medication that had Seamus’ name on it. If this was heroin, he was on a hell of a bad trip.

The first officer arrived within minutes and when he shone his flashlight on the young man I saw that he was a handsome kid with curly dark hair, clothes dirty, eyes wild and clearly frightened out of his mind. His face was the last thing I saw as I fell asleep that night and the first thing when I awakened the following morning—I will never forget the look in his eyes.

As it turned out, Seamus was inside, puking in the locker room. Once the ambulance (and a firetruck plus one more police car) arrived, August and I took off, but we were both really shook up. August hated the fact that we had to call the cops as he didn’t like getting anyone in trouble. ‘Hon, he was already in deep trouble and it was the right thing to do.’

Life is hard. Really, really hard for so very many people. All I could think of as I was watching that kid in that bad, bad place was that somebody out there loved him. And as his arm was already full of needle sticks (the cop looked him over) I didn’t feel terribly optimistic about his future.

I couldn’t go to the gym last night but August did. He said the white van is still there, the interior light yet lit.

Don’t call me partner

Warning: this may be the most contentious blog I’ve ever written.

That is because I am about to desecrate a sacred cow–the idea of patient as a partner in medical research. Lovely in notion, the reality is something quite different and nowhere has that been more clear to me than sitting in the audience at DPharm 2018.

Let’s start with the straightforward definition of partner:

And then let’s parse that definition, piece by piece. A person who takes part in an undertaking with another or others. I have no quibble with this. As a participant (I refuse to call myself a volunteer—I did not ‘volunteer’ for this shit) in a clinical trial, I am a member of a ‘team’ composed of researchers, other participants, clinicians, schedulers, nurses, sponsor, phlebotomists, techs, lead investigator, regulators; even payers.

Every member of this team has an important role to play and, as the term stakeholders implies, to a certain degree the outcome of our endeavor will impact each of us personally.

However, this is where the concept of partner starts to fall apart; shared risks and profits.

No one has more on the line than the participant. The skin in the game is not figurative for us, it’s our actual tissue. Best case scenario: we get to continue living. Worst case scenario: we die. Those are some pretty bloody high stakes and not in the same category as fourth quarter losses.

And now we get to the word profit. Don’t even get me started. I pay for the privilege of participation. Clinical trials are not gratis. The experimental agent/therapy is provided to me free of charge and sometimes certain labs or procedures; in the trial I am currently enrolled in echocardiograms are covered by the sponsor. However, everything else is billed to insurance, and I am responsible for deductibles and copays. Gas, parking, lunch—all paid for by me.

And then there is the physical toll. One hundred and one chest CT scans, 60 abdominal CT scans, 42 brain MRI’s.

So, let’s just get really real here and stop the pretense. I am not your partner and if I am, this is one heck of an abusive relationship. One in which I am bound to you by desperation, you call all the shots, and my only true power is to withhold. Where words like compliant and noncompliant are used to describe me. One in which your need for data is greater than my need for autonomy/personal safety. Sure, you keep me alive but you can also kick me to the curb if my cancer gets out of line again. And when and if you do, there will be nowhere else for me to turn.

We are codependent, you and I. That much is true. But we are not equals and certainly not partners. And we won’t be until you recognize that I am a human being. That I have hopes and dreams and family too. It is my bad luck that I also have cancer. I want to live and I will do almost anything to stay alive. You know that. But don’t exploit it. Do not continually ask me for more blood, more sweat, more tears, more money.

Instead, provide me with genuine support. Understand what I have sacrificed and compensate me for my time, just as you compensate healthy ‘volunteers’ in clinical trials. Being a subject in a trial does not mean that I am also subhuman so treat me with the respect that I deserve. Let’s ditch the condescension and start with transparency. Stop pretending that I am your partner. I know what a true partnership looks/feels like, and baby, we’re not there yet.

Does it get anymore ridiculous than this

Really? A little bit of radiation is good for us? Tell me the EPA is not really on board with this: ‘Calabrese and his supporters argue that smaller exposures of cell-damaging radiation and other carcinogens can serve as stressors that activate the body’s repair mechanisms and can make people healthier. They compare it to physical exercise or sunlight.’

Perhaps chemotherapy is also good for our skin and maybe cancer itself is character building. I sure feel a hell of a lot better about my 101 chest CT’s now. And those 37 chest x-rays? Just icing on the cake.

Read the whole ridiculous article here, at STAT. And weep.

S.N.B.T.H.

That’s my go to complaint. It really should not be this hard. But it is.

Health insurance. Didn’t want to fess up but I’ve been without it this past month. Long story short, the assistance I was counting on per making my selection did not come through (not responding to emails is such an easy way to blow someone off) and when I showed up at the office in person instead (an hour drive, each way) I learned that A. I had missed a deadline and B. I needed to go back home and get on the phone with the folks at the Mass Health Connector anyway.

So….I cancelled my appointments for September and before I left the hospital, stopped by to see my clinical trial nurse. I should always talk to a nurse when I have an issue—no one is more empathetic, more pragmatic or less likely to take shit or no for an answer than a nurse. I then made arrangements with Alice to contact the sponsor to see if I could get drug even though I was not coming in for my labwork/echocardiogram.

Arrangements were made to have my drug mailed to me (not quite without a hitch–they forgot and it had to be overnighted) and I figured out (on my own) which policy would work best for the remaining three months of this calendar year–a higher premium, no deductible plan. As my income is 360.70% of poverty (yes) I qualified for a tax credit which brought my premium down by $127.00 a month.

I feel better when there’s something in my checking account, so I waited until last Friday, three days prior to the deadline, to choose my plan. Because the 23rd (the deadline you have to pay your premium by in order to get health insurance for the following month) was on a Sunday, I needed to get my online payment in by that afternoon. When I attempted to log onto my account, the system did not recognize me. I called back, and was offered two options—drive an hour to Boston to make a payment in person or wait another three hours at which time I was assured my account would be active. I gambled on the latter. Three hours later I still did not register and I placed another phone call to the Health Connector. This time I was again assured (and by now I was in tears) that even though it wasn’t working now, my account should be online by the next day, Saturday.

‘I don’t think you understand’ I explained to the woman on the other end of the line. ‘I am a cancer patient, I already had to cancel my appointments this month, because I had Cobra if I don’t get insurance by the end of this month I can’t get it until January, and if I don’t have insurance for next month, I will have to cancel my appointments again in October and will likely be kicked out of the clinical trial I am enrolled in. I need to know that this is going to work.’

I had a good cry after hanging up and a giant pit in my stomach. And, just as I’d feared, I was never able to access my account.

So I called first thing this morning only to learn that their entire online system was down and that I would need to call back later. I did, two more times. By this afternoon it was finally up and running and I spent an hour on the phone with a very sweet and patient representative. By the end of our phone call I was talking to someone else–an account specialist–as it had been determined that there was a technical error on their end–my billing account had never been activated.

I was given a case number, as this would now have to go into resolution. And I was now informed that I could have health insurance for October but only if I paid for November as well, even though the mistake was theirs. The reason being that the system would not recognize my retroactive payment as an active subscriber as we were past the billing period unless I paid for the next month as well.

Sigh.

The dollar amount for two months of premiums exceeds the amount I currently have in my checking account by several hundred dollars. As in, not doable. I have been told that my case will take several days to resolve. I have to hope that by then my alimony check will have arrived so that I can make the payment.

Caseworker y’all. It would be so great if I could worry about staying healthy and somebody else could help me with this other crap–all of which is a cumulative side effect of years of living with cancer as well as clinical trial participation. Cognitive, financial, emotional toll; unrelenting stress. The wear and tear of dealing with an advanced cancer for almost one quarter of my life.

It’s hard, really flipping hard. And until there are more supportive services in place, it’s not going to get any easier. As in, bucket list, my ass. I’m just trying to get by here.