Monthly Archives: October 2018

Christian Nataline.

Posted on October 29, 2018 | 7 comments

‘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

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Posted in Death and dying, Uncategorized

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And the overcome

Posted on October 25, 2018 | 6 comments

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.

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Posted in Attitude

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The undertow

Posted on October 24, 2018 | Leave a comment

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.

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Posted in Uncategorized

How can it be that I feel so damn fine

Posted on October 21, 2018 | 4 comments
IMG_3242

Nocturnal fog

Yes. Memory and financial challenges aside, this girl is good. Actually-absolutely amazingly goodie, good good. I guess I’ve still got that pesky cancer and I’m coming up fast on my fifty-ninth birthday, but I don’t feel the least bit ill and middle age? Meh.

Two months ago I joined the gym that my son August belongs to. Bless his heart, Aug has allowed his mom to tag along and has even become my personal trainer. I basically follow his workout routine (heavy on free weights with some machines mixed in) and just lift less. Same number of sets though and I get a kick out of the fact that I am shadowing a cut thirty-three year old male. And although I still can’t do either a full push-up or a pull-up (that will happen though), I can hold a respectable plank for three minutes, thirty seconds. For real.

The trick to going to the gym is making it a habit. I joined a week before August left for Burning Man and he figured I’d bail while he was away. Not. I got that routine established and once he was home I was all about it. One thing I just love about working out is that all that hard work pays almost immediate dividends—I was stronger by week two. Talk about positive feedback.

While acknowledging that chance and one of the best oncologists on the planet are key, I like to think that my lifestyle has contributed to my longevity. In addition to exercising one to two hours daily (walk + gym), I eat a healthy diet–few carbs, lots of veggies, almost no processed sugar. Organic everything when I can afford it. My biggest sin is alcohol (put that one in the pleasure category) but I drink moderately. And I indulge in an edible now and again but that seems more a plus than a minus.

I believe my immune system is now stronger than my cancer. And that belief is bolstered by this article from the NYT:

‘Given the abundance of cancer mutations in healthy people, why isn’t cancer more common? Dr. Martincorena speculated that a healthy body may be like an ecosystem: Perhaps clones with different mutations arise in it, compete for available space and resources, and keep each other in check.‘

Per my own ecosystem, I’m obviously doing what I can. However, I have another theory as to why I feel so fine. In addition to it’s cancer inhibiting properties, lorlatinib has an interesting side effect. When I first went on trial I was sleeping ten hours or more a night. Wild, vivid dreams but a deep restful sleep as well. On lorlatinib, if I don’t get enough sleep, I get shaky and feel like shit. So I’m highly motivated to make certain I am not sleep deprived. And although I no longer need ten hours, I now get a solid eight.

Prior to starting on trial for lorlatinib, I had spent most of my adult life struggling with sleep issues. Insomnia, restlessness, waking up in the middle of the night and not being able to get back to sleep, night terrors. As a result, during the day I was always exhausted. I mean, always. If I could find a way to take a nap I would but that just made the whole nighttime sleep cycle more screwed up.

Now I sleep like a child. Soundly. Lots of vivid dreams but I hardly move. If I have to pee in the night I fall right back to sleep and many nights I sleep straight through until morning.

This has had an astounding effect on how I feel. No longer am I yawning all the time and struggling to keep my eyes open. But better yet, I think this wealth of sleep has put my own personal ecosystem back in balance.

Once upon a time, everyone got more sleep, as the sun was our primary source of light. Now our circadian rhythms are subject to the influence of artificial light. I think sleep deprivation has a far greater influence on our biological clocks than people realize–resulting in a negative overall impact on our health.

My advice? Eat well, play harder and sleep longer. Your body won’t regret it.

xo

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Posted in ALKPositive, alkpositiveworldwide, lung cancer survivor

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Don’t call me partner

Posted on October 8, 2018 | 31 comments

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.

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Posted in Advocacy, Attitude, DPharm2018, Uncategorized

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Does it get anymore ridiculous than this

Posted on October 4, 2018 | 5 comments

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.

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Posted in CT scans, Uncategorized

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It gets better

Posted on October 1, 2018 | 7 comments

Which means worse. But I sure am acquiring some useful (not to me, but to my advocacy work) first hand experience.

Let’s start with the good news. I just spent three days in Boston wearing my ‘expert’ on clinical trials hat. First at DPharm 2018, an annual conference which bills itself as ‘Disruptive Innovations to Advance Clinical Trials’. Any conference with disruptive and innovation in the title has curb appeal for me. From an industry perspective, (pharma and biotech companies) it was both. From a patient perspective, we still have a long way to go. However, I am grateful that I and a small handful of other advocates (talking to you, Alicia Staley 😉 ) had the opportunity to attend and to sit on a panel. In addition, the networking aspect of this conference is amazing–lots of bright, fresh, enthusiastic individuals who are willing to both converse and listen. Hopefully I will have the opportunity to attend again next year.

Next up was an action packed day as a team member of the Patient Data Access Initiative, a nascent cross industry effort and a gig where I got paid for my expertise. I call this out because given my current economic climate, it is better than lovely to have monetary compensation in recognition of both my time and education/experience (ie: boots on the ground clinical trial participation). In addition, I went in skeptical–with data collection my first question is always ‘what’s in it for the patient?’–but emerged hopeful that this particular initiative might make certain things better/easier for us as well. Such as, tracking the number of scans we’ve had.

In the meantime, I was queued up for my new health insurance when it occurred to me that I hadn’t checked if MGH actually accepted it. Back in the day I understood this was something you needed to do but A. this was the first time in my life I was purchasing my own insurance (in my youth, I kept the same plan my parents got for me and then once I married, it was whatever plan was offered by the company my husband worked for) and B. I just forgot. This is my ongoing problem–this inattention to detail.

So I called the hospital late Thursday afternoon and guess what. As I was going through the Health Connector and getting tax credits, I could enroll in one type of insurance and one only. Two choices of plans—one with a $2500 deductible and $500 copay each time I had a CT scan and the other with a $1000 deductible and 33% of the CT billed directly to me.

This is why I held onto cobra as long as I did. The plans available to me through the Health Connector have lower premiums but high copays and when you are in a clinical trial, that sucks.

Anyway, all moot now. Because I screwed up I am now entering month two with no health insurance. Come November, I will be covered again. I am oddly calm about this. I don’t know if it is acceptance or surrender.

Once again, I cancelled appointments. Fortunately my scans and review were not until the end of October so it’s not that big of deal to move them to November. I should have enough drug to get by and only one prescription was due to refill. Ironically, it is my antidepressant. I am going to have to bite the bullet and pay full price.

I told my son that if I fall ill or am injured not to take me to the doctor. I was only sort of kidding. This is health care in America. Oh, and don’t forget. I will incur a penalty on my 2018 income taxes for the two months I have not had health care coverage. Hit me. Hit me again. Just make sure it’s not hard enough that I require medical assistance 😉

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Posted in Insurance

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