Tag Archives: stage IV lung cancer

Perfect alignment

The first thing I saw upon opening my eyes today was the planet Mars. Cold little fire in the early morning sky.

‘Hey Mars’, I said. ‘Save me.’ To which Mars calmly replied: ‘I got nothing.’

Honestly, I was somewhat taken aback. But as I stared across the millions of miles of space, I saw not Mars but the light of the Sun, reflected. And I thought about the other side of this star-like planet, now sheathed in darkness. A jet passed high above. I pictured the passengers inside, people on their way somewhere. So far and yet so close as well.

A bird flew past the window; fast. And then some more, buffeted by the breeze. Mars was growing dimmer, and I had to concentrate to keep it in focus. Two more jets, their contrails now lit by the rising Sun. Seagulls, playfully riding the thermals.

All this I could see. Yet the air was also filled with microorganisms, invisible to the eye but very much part of this marvelous froth of life. I felt this overwhelming connection to everything and nothing, as nothing was actually something. And I understood with a clarity that felt like pure joy that even when I was no longer me, life would go on.

At last glance, the bright planet was obscured by daylight. Far, far away. There, but not there.

Thanks for nothing Mars 😉

Threading the needle

So. For me, this, right now, is the most difficult part of dealing with my own cancer. The mind fuckery of waiting. 

My friend Tom Monks replied to a previous blog with a comment that could be a little Haiku poem:

Waiting for results
Waiting anxiously
Waiting patiently
Waiting ……..

Yes. As I remarked to Tom, waiting is such a part of this journey they even have designated spaces for it: waiting rooms.

Unfortunately there is no such space in your head. Bills come due, plans are made, the Holidays happen with or without you. 

It is such an exquisite balancing act. Talking down the fear, the angst, the worry. Staying positive in the face of a level of uncertainty that is, at times, almost incomprehensible. Making myself walk and go to the gym regardless of the fact that I already feel a physical diminishment. Rather, going explicitly because I do. 

Getting my warrior on even as I look around me with ever greater tenderness; I love this freaking world. Readying myself to battle an enemy who I am familiar with in a way that borders on contempt, and yet still at a loss as to how to go about it.

Trying to be at peace while simultaneously preparing to wage war. 

Threading the needle.

xo

Where do we go from here

inked

Prior to my biopsy, this mystery mark was made on my left shoulder. Not certain as to the significance, but hopefully it aided them in getting the right (make that left) side of me.

Aside from that, I am left with two tiny entry points high on my left breast as well as parallel tracks on my left cheek—a red mark from lying face down on top of the oxygen tubes for more than four hours.

Unlike my previous biopsies (there is a benefit to scar tissue), my lung did not partially collapse this time. Diane was able to take me back home with her with the caution that I was to have no alcohol. Therefore, I only had a small glass of wine that evening 😉

What I know thus far is that they were able to get adequate tissue, including a sample for the sponsor of my trial (a token of appreciation). Over the next four weeks, results of genetic testing should start trickling in. This is the watch and wait part of cancer.

Alice called me yesterday (as well as once the night of the biopsy and she also came to see me twice on the day of—goddess that she is). This was a CT assisted biopsy and the surgeon/radiologist who performed the procedure is  also the radiologist who reads my scans, so he is extraordinarily familiar with my body/cancer. He told Alice that the tumor around my heart (which they did not biopsy–too proximal) has grown very little and that the tissue that they did sample–along the chest wall–is growing rather slowly. She feels radiation may be an option there but not for the cancer hugging my heart. 

Aside from that, there is nothing concrete to discuss yet. I am optimistic, she is cautiously so. 

It really is pull the rabbit out of the hat time. And as important as the magician (Alice) is, I am focused on that rabbit.

Nice-ness

So life might be bonking me on the head a tad but there’s some mighty fine shit going on as well.

Take my birthday. Child number two, my son August, took his mama to dinner. Sushi boat and Mai Tais. Yummy yummy ice cream. Paid for by my spawn (a term of endearment in our family). Really quite special and a rite of passage for us both.

Aug and Aug’s mom Linnea

And then there’s the Advair situation. My friend Lynda mailed me an inhaler pronto with the promise of another to follow and a whole bunch of other folks offered to send some as well. However, just the other day I received a package from another friend, Ginny, with six of those puppies inside so I am all set. 

She who prefers not to be named (but thank you) set me up with a massage which I’m going to be taking advantage of in the next couple of days and I am STOKED. I’m the sort of person who likes to go to the dentist because it means someone is touching me and there’s been all too little of that going on as of late. If you know what I mean 😉

Got a guardian angel out there as well—who out of discretion will remain unnamed but he’s friends with some of you as well. Several months ago he just went and made a large deposit in my paypal account. A loan to be paid back when I am able. Unbelievably kind, generous, and knowing. Asking for assistance is not easy for me and frankly the only way this could have happened is the way he chose to do it.

I’ve also got some other loose ends to tie up getting rid of my vintage clothing and replacing the floor in my little airstream. Local friends have offered to help me with both. 

A neighbor paid the fee for my key to be replaced when I lost those. Another friend (girlfriend of a friend but now my friend too 😉 ) is keeping me on track with my book. She is just what the doctor ordered—sassy, smart, incredibly organized. Exactly the sort of task master I am in desperate need of.

And of course I have received many, many messages of support and encouragement.

So, as you can see, I am RICH in friends. Almost obscenely wealthy. And there is no form of plenty I would rather have.

Holding it together; each other

*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.

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.

The weather in here

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.