Tag Archives: ALK + lung cancer

The struggle is real

Posted on October 15, 2019 | 19 comments

Just breathe.

If only it were so simple.

When I’m not coughing I’m wheezing. My left lung is getting boggier by the day.

It sucks, this downward spiral. Been here, done this, doing it yet again.

I mean, I’m tough but this is fucking demoralizing.

There, I’ve said it. Allowed that this shit gets me down. That not falling into despair as I hang on until the next clinical trial that may or may not work takes enormous will power. At times I feel like I’m running on sheer survival instinct. I want to live.

Just live.

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Posted in Attitude

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Branching out

Posted on October 5, 2019 | 13 comments

So. The goddess came through.

First we reviewed my scans and discussed the findings:

Sub-solid mass like opacities in the left upper lobe have increased in size and attenuation since the prior study as described.

Persistent and slightly increased groundglass and interlobular septal thickening in the basilar left lung, suggestive of lymphangitic carcinomatosis. 

Additional sub solid nodules in the left lung are stable or slightly increased in size compared with the prior exam. 

Slightly increased small loculated left pleural effusion.

No surprises there and I am grateful that the word slightly predominates. It is clear where this trend is going but it would also seem that we have time to figure out what the best approach shall be.

First, I am to start nebulizing in an attempt to address my bronchorrhea–the source of the persistent crackle in my left lung. And should it get worse, there is the option of combining pemetrexed with lorlatinib–which would mean leaving the trial and getting lorlatinib by prescription. Avastin could be added to the mix for possibly greater efficacy. Alice is going to start the ball rolling in that direction so that I can apply for financial assistance to help pay for the deductible on lorlatinib–just in case. However pemetrexed kicked my butt energy wise when I was on it seven years ago, so this course will only be as needed.

Most exciting is the news that Alice is going to be opening her own trial at MGH in a couple of months–combining lorlatinib with a MEK inhibitor–binimetinib. She feels this is something that could be effective in my case, so it is my first choice.

Also encouraging is what has been going on behind the scenes in Alice’s lab. My last biopsy identified three secondary acquired mutations. One, G1202R, I had previously and lorlatinib is likely at least somewhat effective against that yet. The other two are newly acquired: S1206F and G1269A. S1206F is rare; Alice has not seen it in any of her other patients. However G1269A is becoming a more common mechanism of resistance to ALK inhibition, along with G1202R.

Alice then shared with me that they have been attempting to make models of all the possible combinations of my three mutations, so as to test drug against them.


I tell you what. This is not the Cadillac of health care, it is the Bugatti La Voiture Noire. It is incredibly humbling to understand the astounding degree of highly personalized effort being expended in the interest of saving my ass. So I damn well better show up.

Yes. That branch just got a little bit thicker–it might even be sprouting some new growth. Alice’s parting words to me were ‘If anyone can do this, you can Linnea.’ To which I responded, ‘If anyone can do this, we can, Alice.’

xo

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The relaxed hostess

Posted on July 11, 2019 | 12 comments

Cancer crashed my party more than fourteen years ago. The guest from hell. Uncouth, unkempt, possessed of a nasty disposition and with no respect for boundaries. Lousy fucking company.

And then there was the matter of an underlying agenda: this guest intended to kill me. To say the ensuing relationship has been uncomfortable is an understatement. And all attempts to evict the interloper have ultimately proved unsuccessful.

Yep. Chances are cancer and I are in this for the long run. At times I think the only remaining question is which one of us is going to burn the house down first.

Now, with no shiny new weapon to pull from the arsenal, I have had a lot of time to reminisce about previous treatment modalities. Cutting, chemicals and more chemicals. In the process I have lost hair, teeth, toenails. My skin has erupted, my esophagus bled. Sometimes I have not recognized who I had become, inside or outside.

Throughout it all I have viewed myself as a warrior, my body the battleground. Fighting, always fighting.

A few months ago I decided that perhaps it was time to try another approach. I would listen to my body, talk to my cancer. “I go, you go,” I said in a reasonable tone. “But it doesn’t have to be this way.”

I’d like to tell you that my cancer perked right up, slapped itself on the forehead and told me it didn’t know what it had been thinking. Apologized for the selfishness, the nihilism, all that stress it had put us through. That now that it had seen the light, it was going to just pack up and go home. Mea Culpa.

But of course that’s not what happened. And I also discovered that my own sense of antipathy overwhelmed any sort of pseudo empathy I might be trying to pull off.

When all was said and done I realized that there was only one thing left to do. I would decide, yes decide, to simply ice cancer. Just like that. “Cancer, you’re dead to me.”

You know what? It’s working. My stress level immediately plummeted. Already familiar with the fact that not giving a fuck can be a super power (really truly) it simply hadn’t occurred to me to stop caring about cancer.

I had scans last week, a review two days ago. And even though the historical precedent has been that once progression starts, it just keeps going, I felt calm, cool and collected. I already knew. My cancer is stable. STABLE, Y’ALL.

We’ll discuss this further. But in the meantime, think about it. Pretty much everyone with cancer is stressed out all the time. 24/7. Can’t be a good thing.

What I’m doing now—deciding not to care—isn’t just some simple party trick. It takes determination and a strong, strong will. But the positive feedback was instantaneous once I figured out how to let go of the stress. Give it a go. Even if for just a few minutes or an hour or two. And then see if you can do it longer.

I am not cancer free but then again, I am cancer free insomuch as I am anxiety free. And I will wager that is bad for the cancer and good for me.

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On the move

Posted on June 3, 2019 | 4 comments

Peripatetic. Such has been my existence as of late.

No complaints. I have always craved the traveling life and feel extremely fortunate that I have been provided with these opportunities.

First, the annual Hope Summit sponsored by LUNGevity and now referred to by some acronym I shall never use (the world doesn’t need another acronym, but it can never get enough HOPE).

Each year this giant reunion of my lung cancer family becomes ever more meaningful. One big love fest. And given the fact that the majority of the attendees are living with a terminal illness, you’d never believe how much fun we cram into those few days.

People who have been living with lung cancer for ten+ years

LUNGevity outdid themselves this year, with the best lineup of speakers yet. I was honored to be part of a committee that planned the conference as well as to sit on a panel, ostensibly about palliative care, but titled Sex, Drugs and Rock and Roll. Next year I think we should drop the pretense and just jump right into an extended conversation per the living part of dying.

A little over a week post conference, I returned to DC for my annual get together with some of my childhood friends. We can’t not have a good time (really) and they too are like family to me. Kate, Melinda, Sally—I love you so.

When grownups take a selfie: Kate and me and a monument

I caught my breath (sort of) before departing for Florence, Italy on the 27th of May. This was an opportunity that came about because A. my friend Marc comes to Florence every summer and invited all his friends to join him and B. as I just turned 59 and 1/2, I have access to my retirement fund without penalty. If I thought I was going to live to 80 I might not touch it but friends, the reality is somewhat different. And in its own way, freeing.

  • V for victory after conquering the Duomo
  • Sunset over the Arno
  • Rapt in the Brancacci Chapel

It’s going to be interesting to see if I run out of money or breath first. Fortunately I now have a little wiggle room in both areas and I’m going to give life a run for its money. So to speak.

So yes, Florence. Dream of a lifetime. Second full day here we climbed the Duomo. 463 steps up, 463 down. I did it, y’all. Fourth in line and only had to let four people pass me on the way up. All young enough to be my children. Own that, lung cancer.

And of course I have been taking lots and lots of photos. Should you like to share in some of my experience, give me a follow on instagram: @Linnea Olson.

xoxo

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Posted in Attitude

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Where I am and where I’m not

Posted on February 19, 2019 | 7 comments
Lunch at Slanted Door in San Francisco

I have been an advocate for lung cancer for a decade now, beginning with a story which appeared on ABC World News with Charles Gibson on June 2, 2009. Weeks later I began my blog and that fall I became one of the original peer reviewers for the CDMRP.

Ten years ago a blog about lung cancer was an unusual thing and lung cancer advocates were few and far between. Thankfully neither of these things is now true.

As I continued and broadened my advocacy efforts I have had the privilege of coming to know and care about so many extraordinary individuals. And I have watched with amazement as they have poured their passion and individual skillsets into advocacy in ways that were often beyond my own scope.

The past few weeks have been a time of soul searching. I am, without a next treatment available, once again between a rock and a hard place. It is what it is. However, this circumstance has meant that I must reassess my priorities. And what I have realized is this: I need to focus on living.

What does that mean? I shall continue writing my blog, my most consistent form of advocacy/activism all along. And I shall selectively participate in additional opportunities. However, I am on the short end of a long stick with much yet to do. As long as I am able, I want to write, paint, travel, love. Take it all in. Swallow life whole.

So there you have it. Two weeks ago I travelled to San Francisco for my friend Kate’s sixtieth birthday bash. Nos amis Melinda and Sally were there as well and we partied for three straight days. A fabulous time. And then I headed south to Palo Alto for some time with Wendy and Cristina, who I met, gee, a little over a quarter century ago when we all worked at the Redwood City Library. They generously paid for my flight and showed me a good time as well. So much fun. So much love.

And then this week my friend Lynn gifted me with a trip to Miami. I fell fast and hard for that city–lying by the pool with the sun on my face and a warm breeze blowing–a little slice of heaven. And Lynn was both a gracious host and a fabulous tour guide; we saw a little bit of everything.

So that, my friends, is where I’m at. In, out, about, around. Living it. Loving it.

  • little me
  • pole as kiosk
  • little Sally
  • at my feet
  • c’est moi!
  • les champignons
  • Miss Sally
  • Linnea, Sally, Melinda, Kate
  • first to arrive
  • the Birthday girl
  • Melinda, Linnea, Sally, Kate
  • Cristina and Wendy
  • a very fine cocktail
  • belly up to the bar

  • Wendy at Duartes
  • Two swedish chicas
  • ah nature
  • ah more nature
  • Wendy, Cristina, Linnea
  • perfection
  • Linnea and Wendy
  • two swedish chicas again
  • Florida!
  • Lynn
  • sky high
  • yes
  • maybe
  • transitioning
  • flora
  • fauna
  • My foot and it’s inmFlorida
  • more Lynn 🙂
  • this is Florida too
  • Miami Beach Art Deco
  • message
  • outside in: public restroom

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Posted in ALK mutations

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Holding it together; each other

Posted on November 20, 2018 | 9 comments

*A hug is a form of endearment, universal in human communities, in which two or more people put their arms around the neck, back, or waist of one another and hold each other closely. If more than two persons are involved, it is referred to as a group hug.

The origins of the word are unknown but two theories exist. The first is that the verb “hug” (first used in the 1560s) could be related to the Old Norse word hugga, which meant to comfort. The second theory is that the word is related to the German word hegen which means to foster or cherish, and originally meant to enclose with a hedge.[1]

*Thank you Wikipedia 🙂

And I hope all of you felt the power of that group hug just as clearly as I did.

Because really, there is nothing quite like a hug. Akin to the word ok—it doesn’t overpromise. Unlike a kiss, which suggests greater intimacy, a hug can happen anywhere, anytime, and between total strangers. And like ok–it can soothe, calm, provide momentary comfort.

Most importantly, it reaffirms our connection to others, reminding us that we are in fact not alone.

And that’s why it had to be a group hug. I got squeezed but I was squeezing back hard. I know I’m not the only one going through a tough time right now. Lung Cancer is a ruthless disease–those sucky survival stats are not just for show. And even though those of us with a targetable mutation have seen a dramatic increase in five year survival rates, it’s like playing poker. There are a limited number of cards in this deck and once they’ve all been dealt it’s a whole different game.

So, my tribe, my fellow travelers. Let’s hold each other tight.

9 Comments

Posted in ALK+, progression, Uncategorized

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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

4 Comments

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.

31 Comments

Posted in Advocacy, Attitude, DPharm2018, Uncategorized

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Deepest Indigo

Posted on August 26, 2018 | 34 comments

IMG_2826

Depression is having its way with me.

Yesterday I took myself to Five Guys for lunch. A small cheeseburger, fries and a chocolate malted. Not so bad, as I am working out again.

But then dinner rolled around and so did my gloom, just like a bank of fog. I started with a glass of white wine (that bottle was staring at me so I just decided to kill it). Some black licorice. Five olives. A beer and a banana. Cereal with goat milk kefir and frozen blueberries. My repast all over the place, just like my mood.

I feel as if my schtick is strength and positivity. For the curriculum vitae I am putting together I have Adversity Expert as one of my skills (given my lack of actual substance, I am taking some creative license with my CV). And honestly, I feel as if I am letting some of you down by so openly sharing my current depression.

However, in the name of keeping things real, this is part of it. Any one of the stressors in my life (emotional, financial, physical) is enormous and when you add them all together, it is, on a good day, extremely challenging. And on the bad days–overwhelming.

What I am describing is OTSD–ongoing traumatic stress disorder.

Yes, I am unusually resilient. However, almost thirteen and 1/2 years of dealing with this shit has taken its toll. Last night I managed to waken myself from a nightmare because (and I distinctly recall saying this to myself) ‘I don’t want to see where this is going.’

If only it were so easy to walk away while awake.

So please bear with me as I move through this tough place. As my Granny B was fond of saying, ‘this too shall pass.’ And so it shall.

34 Comments

Posted in Attitude, Coping, Living with lung cancer

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The lung cancer blues

Posted on August 25, 2018 | 8 comments

I was a miserable child. As in, I was miserable; a good deal of the time.

As a ward of my parents, I felt a good many things to be out of my control. However, with careful observation it became clear to me that I was in charge of my personal happiness. And I set about making certain that my own disposition became–through much effort–a sunny one.

This has served me well. Certainly, it has made me more likable but it has also impacted my outlook on everything.

Even cancer. Yep, when I was first diagnosed I look at my odds (not very good) and decided that it was going to be hard, but that I could do this. As in, I had the skill set (that sunny disposition being part of it) to give this a go.

And so I have. But of course, I never could have guessed that I’d be at this surviving thing for such an extended period.

It’s a blessing. And a curse.

There was a sweet little op ed in the NYT’s today about the good in taking things for granted. Sadly, that is a luxury well beyond my reach; an innocence lost long ago.

No, my life is fraught; every frigging moment. Not by choice, but rather circumstance.

Thirteen, going on fourteen years of living with a disease such as lung cancer. For the bulk of that time, well over a decade, I have also lived with the knowledge that my cancer was terminal.

My cancer has remained stable for an extended period. Somnolent, resting, biding its time. I feel good/strong. Sometimes I even pretend that I can let down my guard–just assume I’ll be sticking around. Those are the good days.

But then it hits me. All of it. Like a ton of bricks or a platinum doublet. I am alive but alone with an uncertain future on every front. Grateful and terrified all at the same time. Sad and sometimes angry too. Anxious about my friends because even if cancer’s not breathing down my neck, it’s breathing down theirs.

I was right; this is hard. Really hard.

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Posted in Attitude, Uncategorized

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