Monthly Archives: November 2018

OTSD

Posted on November 29, 2018 | 12 comments

Ongoing Traumatic Stress Disorder.

I have it. There is no way in hell I could not.

Fourteen years of dealing with my own impending mortality. That one, I sort of have a handle on now. Not easy, but understood.

But the others. All the other people I have become so extraordinarily close to and then lost. Dozens. A hundred. More. Goddamn it hurts. And hurts with the knowledge that it is not going to stop–this ongoing loss.

There are reasons why I insist on embracing the battle metaphor. Cancer really is a war and I have been in active duty for far too long now. On the front lines against an enemy that gives no fucks. A relentless, nihilistic, take no prisoners foe.

Alive but with the knowledge that the only option open to me is to keep fighting. Even on days like today when I want nothing more than to have someone hold me close while I simply weep.

I am bent. Bent with grief. Wracked with sobs. Tired. Oh so very tired. But always battling; for me, for them, for all of us.

Rest in peace my friends. Now rest.

12 Comments

Posted in Death and dying, Uncategorized

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Giving Tuesday

Posted on November 27, 2018 | 1 comment

S’alright. Shameless (make that proud) pitch for two of my favorite organizations on Giving Tuesday.

First, Camp Kesem. Honestly, I don’t know how my family would cope without Kesem in our lives. This free (yes!) camp for children impacted by a parent’s cancer diagnosis has played such a positive–make that transformative–role in our son Peter’s life.

Peter at Camp as well as a quote from him (Coati is his camp name).

Only seven years old when I was diagnosed with lung cancer, Peter’s childhood had a shadow over it. The summer he turned eleven, we were told I had three to five months left to live and both Peter and I began counseling. Obviously I didn’t die then, but we were all traumatized.

I had to talk Peter into camp and could only hope it would prove to be a positive experience. He came home from his first Camp Kesem MIT (college students from around the country both staff and support chapters) with the assertion that it had been the best week of his life.

Peter continued to be a camper right up until he aged out and now that he is a student at MIT, he is a counselor. His fellow campers and counselors are part of Peter’s extended family–a family that gets what it’s like to grow up with cancer in the house.

Last fall I had my own opportunity to attend ‘camp’ in Peru, as a fellow with A Fresh Chapter. Unlike Peter, I required no urging. However, my experience was every bit as transformative for me as Camp Kesem was for him.

Like Peter, I was surrounded by others who got my experience with no prior explanation required, as each of us had been diagnosed with cancer. For two weeks we worked in the morning as volunteers in the communities surrounding Lima. After lunch we’d sit in a semi circle of comfortable chairs in a large room that overlooked the ocean. Many magical conversations happened in that space and along the way we formed an unbreakable bond. My tribe is now part of my extended family–twenty three people that I love and respect to the moon and back.

So please, on Giving Tuesday, consider supporting one (or both) of these two life changing organizations.

Camp Kesem (Peter Duff’s fundraising page 😉 or A Fresh Chapter. And help spread the gift of healing.

❤

1 Comment

Posted in Cancer and our children, Connections, Coping, Uncategorized

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I did it again

Posted on November 26, 2018 | 20 comments

Got older, I did. Woke up this morning to the ripe old age of 59. Yup. A feat that not so long ago I thought impossible.

Now I’d be lying if I said it was getting easier, this having of the birthday. Like that throw away phrase ‘just breathe’, what may be easy for some is a hell of a lot harder for others. But I’m determined to keep doing it, for as long as I am able. Possibly longer.

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Yesterday my friends in the lofts threw me a surprise party. Both my sons were in attendance as well and it was a really special treat.

This morning I left my house at 6 am for my annual mammogram. Later today I see the vaginal/vulva specialist to address some uncomfortable side effects potentially related to treatment with perhaps a bit of aging thrown in. Pressed, poked and prodded. The indignities of keeping it all in working condition. But, viewed in another light, a privilege.

I love this body of mine. We’ve been through a lot together with more to come. And the least I can do is to try to take care of it.

To that end, August and I will head to the gym later today. And then this evening we are going out for sushi and perhaps a show. In most respects, just another day. Which is exactly what I wished for/wanted 🙂 .

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20 Comments

Posted in Living with lung cancer, Uncategorized

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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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In serious need of some mojo

Posted on November 19, 2018 | 44 comments

Plum out of that good stuff.

At the moment, my biopsy is three weeks away. Not so far really and yet also not close enough. Nebulosity. The in between. And for someone who is information driven (that would be me), not a lot of purchase.

I have the best oncologist in the world. There is no doubt she will come up with something but there is also no denying my options are limited. That pesky G1202R mutation that I acquired while on ceritinib has me backed into a corner. Fortunately lorlatinib overcame that particular resistance mechanism.

It was heady stuff; feeling good, and I had a mighty good run. But I also got a little carried away as I allowed myself to believe that maybe, just maybe, I was cured.

Yep. That was fun while it lasted. But now I’m ready to rumble, so to speak.

In the meantime, I am grateful for my formidable group of friends. After my last blog about the over the top copay for Advair, I received lots of offers for assistance. Linda S. got right on it and overnighted me an inhaler. Mucho mucho gracias darling–I am breathing easier because of it. And thank you to the rest of you as well.

But back to that missing mojo. It has been my experience that the best way to refresh that particular feeling is a giant group hug.

So lean in y’all. And squeeze extra tight.

xo

44 Comments

Posted in ALK+, progression, Uncategorized

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And they call this coverage

Posted on November 14, 2018 | 38 comments

$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.

38 Comments

Posted in ALK mutations, Uncategorized

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The weather in here

Posted on November 10, 2018 | 2 comments

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.

2 Comments

Posted in Relationships

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Bitch is back

Posted on November 7, 2018 | 18 comments

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.

18 Comments

Posted in progression, Uncategorized

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An ill wind

Posted on November 5, 2018 | 18 comments

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.

18 Comments

Posted in ALK mutations

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Every breath we take

Posted on November 1, 2018 | 1 comment

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.

1 Comment

Posted in Advocacy, Uncategorized

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