Category Archives: ALK mutations

Yes to this

Imagine a health care system based on these principles:

Services are funded through progressive taxation, so access is based on need, not ability to pay, and financial contributions are based on wealth, not health.

That’s the German model, as reported in the NYT’s today.

Although I have felt blessed to reside in a country where I’ve had access to cutting edge medical research, it has also meant that I max out my deductibles in the first two months of every calendar year. The end result is that more than one third of my income has gone to healthcare. Incredibly stressful and not a tenable situation. In short, there has to be a better way.

For a more in depth look at the German model, follow this link: The German Healthcare System

Where I am and where I’m not

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.

Oh Lorbrena

Like some fancy fantasy girlfriend, the drug formerly known as lorlatinib has been rebranded Lorbrena. And not a cheap date, Lorbrena. Check out these over the counter prices for a months supply:

However, even given her top shelf status, my Lorbrena is handed over in a brown paper bag to be carted home wino style. A brown paper bag that evidently blends into the surroundings so very well, I simply forgot it was there.

Yep. One whole week without taking my cancer meds. Blame it on stress; they sprayed my loft for bedbugs for the third time this week, on the same day I was getting surgery on four ingrown toenails that are an apparent side effect of hanging out with Lobrena all these years. And change; August and Lily moving out did a number on me. Then there’s memory; I just can’t. Remember. And it’s getting worse with time.

So there you have it. Gotta say, I enjoyed my little respite but starting up again resulted in a full on case of the runs and the shakes; just like our first date so very many years ago. And now, in order to keep this relationship on track, I need to begin (duh) setting an alarm to remind me to take my meds. That is, if I can remember to. Maybe I’ll even start filling out the daily diary (I usually do it in the office and when my nurse comes in, I sing a little song ‘making shit up, making shit up.’ Honestly. I am not non compliant for the sake of non compliance but those diaries are busy work. And, this being 2019, you might think we’d have a more sophisticated mechanism for capturing supposed data than a worksheet. I’m over it.

But the taking of the meds? I need to be on it.

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.

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.

So this is pretty fabulous

I want to share something wonderful with you. As a member of the ALKPositive group, I offered to start an Instagram page where photos and stories of ALK+ patients could be shared. I knew it would be special but I had no idea how special. Nor did I realize how moved I would feel as I transcribed these individual stories of suffering but also formidable grace and courage. So many beautiful faces. Almost all of them stage IV. Far too many of them young, including a number of women who were diagnosed either while pregnant or just after giving birth.

But what shines through the most? Love. Lots and lots of love. Please go to Instagram and check it out at alkpositiveworldwide. Follow us. If you are ALK+ (or if you have lost someone who was–this is intended to function as a memorial as well) and you’d like to be part of the wall, submit a photo to me as well the following information: Date of diagnosis, stage and age. And a brief statement about living with ALK+ lung cancer.

This is our opportunity to show the world the faces of lung cancer. Brave, beautiful, loving, living, finding ways to cope and always, always hoping.

Words matter and this one’s gotta go

Screen Shot 2018-06-04 at 5.38.14 PM

Yesterday was National Cancer Survivors Day, and I just went meh. Wait–make that hell no.

I don’t ‘do’ Survivors Day. My lack of enthusiasm is manifold. First of all, cancer is not a damned day. For many of us, there is no life ‘after’ cancer. Nope. As I’ve said before; been there, doing it. This is present tense.

And then there is the word survivor. I loathe it. Survivor is too much, too little, too late. If you haven’t stopped to read the definition of survivor lately, let me refresh your memory:

Screen Shot 2018-06-04 at 5.58.20 PM

Yuck. Who wants to be the ‘person remaining alive after an event in which others have died.’ Or the ‘remainder’. I suppose someone who ‘copes well’ is a good thing but then again, a rather serious understatement when you are talking about cancer.

The word ‘survivor’ is inadequate. It is also implicitly negative/ugly. No one wants to be ‘the sole survivor of a massacre’–we want everyone to survive. Ever wonder where survivor guilt comes from? Look no further.

In the past I have referred to myself as ‘surviving cancer’. The verb vs noun thing seemed to better capture the fact that I am now and likely always will be in treatment.

However, after thirteen years of surviving, I’m sick of this shit.

From now on, I reject both verb and noun in favor of a far more positive/forward thinking term. I am living with lung cancer.

And you know what? There is no guilt associated with being alive. If you’re not already there, join me.

xo