Category Archives: Attitude

Baller

Let me start by saying my last scans showed continuing stability. Fifty (50!) months and counting; thank you lorlatinib.

And then, a salient detail per those last scans.

I walked out on my brain MRI.

Yessiree bob. Alice and I had talked about the fact that given my persistent lack of brain mets, MRI’s of my brain every three months (mandated by the protocol of the clinical trial) were not clinically indicated. And that it might be more appropriate to get them (yea!) annually.

I hate brain MRI’s. Yep. I’d rather have twenty needle sticks in a row. The percussive and excessively loud noise of an MRI makes me hyper anxious. As I drive to scans by myself, I cannot medicate for anxiety, and so I simply ask them to stuff as much wadding in around my ears as is possible.

To date, I have had 50 (FIFTY) brain MRI’s (hold the presses—I need to get myself up to the records department to check this #. Patient Gateway is a cluster fuck and I’m not sure my tally is accurate. In the meantime, know that it has been a lot.) Wrap your mind around that number in a slightly different context. Since 12/22/16, it has been known that I have gadolinium deposits embedded in the tissue of my brain; secondary to intravaneous contrast. Although it is unknown if I shall suffer side effects secondary to gadolinium deposition, it is concerning and I have been forgoing contrast for two and one half years now.

When I showed up for my scans last Thursday, I was scheduled for a brain MRI in addition to the chest CT (I am non-compliant per the abdominal CT scans, with 44 of them below the belt to date). As I lay in the CT scan I had this little conversation with myself. It went sort of like this: ‘Would I rather be sitting in the MRI machine or in my car, with the radio cranking?’ Then of course the guilt set in. Lorlatinib is months away from FDA approval. If I walked out on my MRI could my non-compliance throw a snag in the trial? Should I simply take one for the team?’

In truth I’d been taking one for the team for a decade now. And, if my walking out today truly screwed things up, I could always get an MRI at a later date.

When I told the technician that I would be skipping my MRI she warned me that patients are sometimes kicked out of trials for this sort of thing. ‘Well, then wish me luck’ I said.

I walked out to my car, put the key in the ignition, and drove north. Balls out, y’all. This girl’s gonna live and although that’s a big YES it sometimes requires just saying no.

Something’s not right here

 

I’ll be going along going along and then every once in a while I get this sense; the world has lost its goddamn mind.

To wit. I ordered some Tickled Pink Pickles (delicious, you ought to try them) from Walmart, way back in April. I was to pick them up at a local store and after being notified they were ready, I got a second notice that they were out of stock. Fine. Weeks passed and I forgot about the pickles.

Until yesterday, when I received a notice from Walmart that my order was in. Stranger yet, 21 minutes later I received a second notice thanking me for picking up my order.

Not me. Not my pickles.

It took too much of my time to find the number for Walmart Customer Service (thank you google) and then to explain to the person on the other end of the line the intricacies of this situation. The four month lag between order and delivery, the impossibility that it was actually I who picked up the pickles (‘They just want them back’ she said). It really shouldn’t be this hard.

And then last night an email from the person I share a storage unit with, thanking me for paying my rent but also reminding me that our rent had risen again and thus I owed her another five dollars (this is a loosey goosey arrangement). Well, as this same scenario had happened a few months ago and rent hikes are per the calendar year, I inquired further. She sent along a copy of the rent notice showing that the price for the unit had risen from $176 to $179 a month. Huh? I messaged her back saying ‘So it went up $3 and you raised mine $5?’. Yes, she responded. And then wrote a long-assed explanation as to how she had measured the space inside and discovered that I had 1 sq ft more than she did. And so, just to make things right, she had, without discussion, been arbitrarily hiking my rent while also blaming the landlord: ‘This kind of sucks the rent is going up. Your share will be 85. Sorry about this but I have no control.’ Uh, yeah.

Oh, the humanity.

Sometimes it’s funny. Other times a little bit funny but sad too. But then it can just be sad, like when I open the New York Times and read stories such as this: TRUMP ADMINISTRATION UNVEILS ITS PLAN TO RELAX CAR POLLUTION RULES. That can’t be right, can it?

It’s not. And it would be easy to say we have no control and/or that it’s too hard to fight back. But we must. We share this planet and if we are complacent, we are complicit.

Never ever be afraid to stand up for what’s right even if it’s a small thing (pickles). Deciding not to sweat the seemingly minor transgressions can be a slippery slope. Lately I’ve noticed that when something is priced at, say, 1.99, the merchant automatically keeps the penny. It may seem like nothing but…it’s not. A penny is a something and if I want to give it to someone, that’s my choice. But they shouldn’t automatically assume that it is theirs. Speak up, speak out, and don’t be afraid to ask for and sometimes even demand change–double entendre intended.

Those pennies add up.

Words matter and this one’s gotta go

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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:

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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

 

Oh yes you can

When it comes to life, I am not adverse to dreaming on a large scale (go big or go home). And yet I remain ineffably grounded in reality. Words such as scaleable and practical come to mind. And, my all time favorite, doable.

I like doable because it is a word that neither dashes hope nor over-promises. Doable simply says, this thing could be done. Put another way, it is possible. And that leaves a lot of latitude.

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And the phonetic rendering is absolutely charming…

When I first learned I had cancer and specifically, lung cancer–I knew I was heading into some stiff winds. However the little voice in my head said, ‘This is going to be hard but I can do this.’

That can-do attitude has served me extraordinarily well, and the word can’t has been pretty much excised from my vocabulary.

The truth is, some words just aren’t particularly useful. Take cure; that word is absolute bullshit. First of all, the meaning is nebulous: ‘relieve (a person or animal) of the symptoms of a disease or condition’. Secondly, the impact of a word like cure is potentially nefarious.

Everyone with cancer wants to be cured. Far too many of us have been told we never will be, that our cancer is ‘incurable’. The distinction/distance between these two supposed states–cured and incurable–is one of immense emotional devastation.

It you are incurable, than what can you possibly hope for?

Well, how about being healed. Whereas cure may be a technical impossibility, (and do remember, these are words, all words, not necessarily realities), healing is actually incredibly doable. The definition of healing is ‘to become sound or healthy again’.

So do it. Reframe the way you regard yourself. Discard that which is unhelpful and even hurtful. Embrace where you are at at right now. Heal yourself.

xo

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On Privilege

My morning ritual now is to roll out of bed, release Kumo from his crate for a brief hug and scuffle, pull on yesterday’s clothes, grab leash, keys and sunglasses before heading out the door for an hour-long walk with a little white dog at my side.

We have become a bit of a fixture in this neighborhood and it is no longer unusual to have people wave or offer a greeting. On this particular morning we saw a young woman jogging and I thought to myself that the U Mass students must be returning. Later, as we crossed a bridge, we moved over to let a young man on a bicycle pass. He too appeared to be a student–nice bike, preppy clothes, trim hair and eyeglasses, smelling freshly scrubbed as he rode by.

As pedestrians, we had the actual right of way on the sidewalk and yet it is my practice to move over for cyclists, a gesture which is almost always acknowledged with a smile or a thank you.

However, this young man, who looked the very epitome of privilege, did not appear to notice the woman and her dog (us), scrunched against a traffic barrier so that he could pass without dismounting. This irritated me–in a way that it would not have had he not possessed the air of privilege. I berated myself for feeling judgmental–perhaps the young man was simply shy and lacking in social graces.

However, it got me thinking.

One of the privileges of privilege is a special set of blinders; if you are privileged, you are also unaware of your privilege because it is something you take for granted.

Privilege is autonomic–like breathing, or the beating of your heart. If you are privileged, you don’t give it much thought–again, the privilege of privilege.

Of course, there are so many layers to privilege, something I was reminded of when we walked by a group of construction workers and one of them laughed in a lascivious way. It is a laugh I am all too familiar with–one that connotes a very different sort of privilege.

I gave this more thought. What a privilege it once was to lie on the beach rather than in a CT scanner. And what a privilege it is to lie in a CT scanner rather than on a table in a morgue.

It’s all relative, privilege.

 

Terminal, incurable, alive.

It’s a heady mix. You have advanced cancer which is, by definition, both incurable and terminal. And yet, thanks to ‘the wonders of modern medicine’, you’re alive–aka–not dead yet.

Because you prescribe to not just a glass half full but rather a ‘my cup runneth over’ mindset, you always try to stay focused on the bright spots. First, waking up in the morning. Never, ever, taken for granted. The chance to see your children even a few minutes longer–mind blowingly awesome. Meeting fellow travelers on this friggin ‘journey’–others who’ve been smacked upside the head with cancer–your life has been made oh so much richer by each and every one of them. And then there is the fact that you get to hang with your oncologist (a goddess) and a bunch of swell nurses—perk and more perks.

So yeah, you’ve been fortunate. And at the moment, you are on a targeted therapy that is keeping your cancer in check. You don’t even look as if you’re sick, let alone terminal.

Which, by the way, makes it very easy for those around you to forget that you have cancer at all.

But you, you’re always aware. Friedrich Nietzsche once said “That which does not kill us, makes us stronger.” Bullshit. Sometimes it just keeps on trying.

Each day you continue surviving is an achievement. It is also a tremendous struggle–physically, mentally, emotionally, financially. An endless struggle too, as there is no top of the mountain, no victory lap, no cure in sight.

The heady mix becomes a mind fuck. If you are lucky, you have adequate support. Enough resources so that you don’t live in a constant state of anxiety; friends and family with sufficiently long attention spans who don’t drop away when terminal becomes chronic.

Because the truth is, nobody wants to think about cancer all the time. My marriage ended, in large part, because my partner found our lives too ‘cancer-centric’. I’d break up with cancer this very moment if I were able to, but it seems we are one and the same. Cancer doesn’t just inhabit my body, on a cellular level, it is me. My own selfish, nihilistic and wildly dis-obediant cells.

Sigh. Living well may be the best revenge and most of us do whatever we can with what we have to work with. I’m certainly not interested in becoming a schadenfreude. However, when living itself (liv·ing: a : having life) is a big fat uncertainty, then living well often requires more psychic energy than a person can muster.

Short of curing cancer there’s not much you can do other than to be understanding. And supportive. It’s not easy living with the knowledge that you are terminal; harder still to remain happy while doing so. Honor that.

Going where I don’t really want to go

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There is very little that makes me anxious any longer. However, I am parking phobic. I will drive anywhere, in any sort of weather, but having to search for a parking space causes me undue anxiety. And so I generally avoid situations where parking is an unknown. Which of course means I miss out on certain things.

However….these days I am all about embracing challenges. Yesterday I was meeting a friend in Cambridge for lunch. I also needed to stop by my son’s dorm at MIT as I’d finally located my missing electric toothbrush charger (it had gone to college along with my son).

When I left my loft in the morning I was feeling incredibly scattered and rushed and was doing my best not to get stressed out by the fact that I was leaving late and also that I would need to find a parking space when I got there.

Traffic was a breeze (thank you traffic god) and as I approached my destination I decided that it was high time I faced this ridiculous apprehension of mine head on (of all the things to be afraid of!). And I would do this by approaching the task calmly, assuredly, and with the end goal in mind. No big deal.

Well I immediately passed by two empty metered parking spaces (the ones I was looking for) but they were on the wrong side of the street. It was too narrow to negotiate a u-turn in my SUV so I decided I’d keep driving until I was able to turn around. As I waited at the light one of the spots was taken. I got a little sweaty as my anxiety started to rise but I talked myself down. Two lights and one (probably illegal) u-turn later, I was on my back to what I hoped was still a vacant parking space.

To my relief, it remained unoccupied. To my exasperation it was, thanks to the construction vehicle parked in the space to the front, not quite a full space. And said construction workers were sitting on the steps of the neighboring building having their lunch. Oh goody, an audience!

This is probably a fine time to mention that the only thing I didn’t pass with flying colors in Driver’s Ed was parallel parking. And this, of course, was a parallel space. However, I put myself in the ‘I cannot fail’ zone and after positioning my vehicle just so, I cranked that wheel and eased on in before the watchful gaze of all those construction workers. One more tiny adjustment and I was parked, mere inches from the curb with not much more distance between my bumpers and those of the adjacent vehicles.

Damn, that felt good. Confronting something I was afraid of.

Later in the day I had an errand to run in Lowell. With my confidence running high, I settled on yet another tight parallel parking situation. This time an elderly gentleman walking by stopped to watch my progress. This space, tighter yet, required several wheel cranks and adjustments before I was in. When I glanced up, the gentleman was giving me the thumbs up.

When I got out of my car I looked over my shoulder. He had walked several yards but he turned around and gave me a second thumbs up. “That wasn’t easy, you know” I said. He smiled widely, waved and nodded his head in agreement.

I smiled back, outwardly and inwardly. One more bugaboo, banished.