Monthly Archives: August 2018

The down, the dirty, the skinny, the scat.

Gadolinium: heavy on my mind

You have no idea what’s going on in my head. Really. And, nor do they–the authorities.

That’s an MRI of my brain, demonstrating gadolinium deposition secondary to injected contrast. It is the rather faint, white, symmetrical ‘stain’ (it is actually referred to as a brain stain). Rorschach like. It’s been there since at least December of 2016, when it first showed up in my radiology report: There is nonspecific intrinsic T1 hyperintensity involving the globus pallidus and dentate nuclei bilaterally likely secondary to gadolinium deposition of uncertain clinical significance.

I had been aware of the possibility of gadolinium retention for at least a year prior to this finding and because of my concerns, had once again become non-compliant—in this case, refusing contrast.

To be clear, I have more latitude here than someone with either active or a history of brain mets. I’ve never had mets to my brain, which is part of the reason I have pushed back on scans that were mandated by protocol but not clinically indicated. Part of the rub when one is a clinical trial participant rather than a patient.

The day I found out about the gadolinium I was pissed. Really, really pissed.

As a requirement of the trial we took a cognitive test at each visit and part of that test was to write a simple sentence. I had a monkey in the cage/rage moment; threw a little scat at the keeper, if you will. My sentence that day read ‘Fuck you (sponsor of the trial), I have heavy metal on my brain.’

The jury is still out as to whether or not there already have been or will be side effects associated with gadolinium retention. Although everyone can certainly agree that it’s probably better not to have gadolinium in one’s brain.

And before anyone panics, know that it is still extraordinarily uncommon (and no, I did not want to be the poster child for this one). I believe I am Dr. Shaw’s only patient to date with this finding. And in discussion with her about this issue, she is adamant that a CT scan of the brain without contrast is basically useless.

My frustration was with the fact that I didn’t need the bloody MRI’s in the first place and I have had–at MGH alone–42 of them. That, my friends, is why I no longer hesitate to be noncompliant.

Bounce

I don’t do things halfway and when I go low, I go low. Take no prisoners, lethal sort of low.

My face couldn’t couldn’t get out of the way soon enough and so I made a minor mess of it. If you’ve never picked your skin you wouldn’t understand, but if you have, you know. Damned if you do, but in some sick way, self damage is an amazing way to relieve stress. However, just like alcohol, it tends to make things worse the following day.

That said, my mood is on the upswing. Sometimes when you hit bottom you bounce. I plan to take that momentum to propel me forward into some healthier activities. Writing (I’m on a roll), working on my health insurance, going to the gym and yes, painting.

It’s been a long time since I’ve held a brush but my easel beckons. And getting my art on might just be the perfect antidote to much of what ails me.

That, and the always amazing outpouring of love and support that a post brings–both here and on Facebook. Thank you. Know that every message goes straight to my heart in the best of all ways and that as alone as I feel at times, I’m really not. Because I’ve got all of you. ❤

Deepest Indigo

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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.

The lung cancer blues

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.

Word.

American Cancer Society, we need to talk.

You, with the snappy first-in-the-phone-book name, American Cancer Society. The organization that I first turned to when I was diagnosed with lung cancer in 2005, because, as far as I knew back then, you were it.

The only game in town.

However, you disappointed. Nada, in the way of advocacy/assurance/assistance. Unless, of course, I wanted to stop smoking. Which I didn’t, as I’d never smoked in the first place.

Eventually you got on board. Sorta. You just couldn’t let go of that smoking/lung cancer connection. Perhaps it was contrition–making up for your past sins, like this article that appeared in The Atlantic in January of 1956, in which Dr. Charles S. Cameron, then Medical and Scientific Director of the Society states: ‘It does not hold that smoking causes cancer of the lung. It does not propose to tell the public not to smoke.’

Now you just can’t seem to talk about anything but smoking and whether or not it is your intention, the American Cancer Society’s obsession with the tobacco/lung cancer connection–which ignores the fact that roughly 80% of those newly diagnosed with lung cancer are either former or never smokers–adds constant fuel to the perpetual stigma fire.

You just came out with a survey in which you ask people what they care most about when it comes to cancer and though you make references (twice–each) to both tobacco and smoking you never mention lung cancer. Even though it is the Number One Cancer Killer in the US, according to the Lung Cancer Foundation of America, killing more than breast, prostate and colorectal cancers, combined, every year’.

 

So what I’d like to know is why is it that you can talk until you are blue in the face (been there, done that–shortness of breath is a common side effect of LUNG CANCER) about TOBACCO and SMOKING and yet you can’t come clean about the fact that LUNG CANCER is something that can happen to ANYONE. That really, all you need are lungs. And that the NUMBER ONE CANCER KILLER IN THE USA AND THE WORLD should be declared a national priority as well as a FUCKING EMERGENCY.

Just saying.

This life of mine

I woke up in a hotel bed in Vegas this morning. Work, not play as I am here on behalf of Pfizer to speak on a panel. However, any morning I can sleep in feels a lot like vacation.

The highs and the lows. I rode to the airport yesterday via Uber and I actually wasn’t quite sure I’d make it. My driver was a recent immigrant and possibly yet unfamiliar with the rules of the road. At least, that’s what I said to myself as he cut across four lanes to take an exit after veering off course for the second time. Fortunately the flight was uneventful and I was picked up by a shiny black SUV at the airport.

Poser. I didn’t actually drink/eat all of that 😉

This is the third time I’ve travelled in the past month as a friend donated miles to get me to Louisville for the first annual ALKpositive summit. It was meaningful to meet many of my fellow mutants and their families and I had a blast. I flew from there to St. Louis—via Chicago, even though it would have been a two hour drive. Not my dime or my itinerary, but in the end, certainly my pleasure as I got to spend several days with members of my Fresh Chapter tribe in meetings at Eli Lilly (an important sponsor of A Fresh Chapter).

Hugging my man Scott after our interview.

We crammed a whole lot of connecting into a little less than three days but it felt as if we were just getting started. And as glad as we were to be together, each of us felt the absence of the other members of our tribe. By the time we reprised our group hug at the end, I was feeling mighty emotional. In the best of all possible ways. You just can’t go through an intense experience like volunteering in Peru without developing some extraordinary bonds.

All of this diversion has been a good thing as I’m having a moment.

Three months ago I took myself off of Prozac, the antidepressant I started taking not long after my diagnosis with lung cancer. Prozac is highly effective for me and I tolerate it well, although it is not without side effects, including reduced libido. On three occasions I have taken myself off of it and each time shit has hit the emotional fan. My experience this time was no different, as I was slammed with the double whammy of losing my insurance and a bad breakup.

My insurance was restored but my confidence, not so much. Although there is no question I am better off without the relationship, I am feeling wary–sort of a persistent, creeping anxiety. I am certain that shall soon pass and in the meantime I am healing my heart in the best way I know how; loving on my friends, my children, and my little white dog.

Oh yeah, and Prozac. As much as I like the idea of being off an antidepressant, I am better on. And better is definitely the look I’m going for 😉

This really just happened

I once told a customer service representative from Verizon that I understood why they were the most hated company in America. ‘No,’ she said. ‘We’re actually the second most hated company in America.’

AT&T must be number one.

Y’all know I have memory issues and that if a bill has been paid late, I am the usual suspect. However, when a caller identifies themselves as a bill collector and then asks if I am still living at an address that is not and never has been mine, I figure I’m talking to a scammer.

The third time I received a similar call I dug a little deeper. They said they were calling on behalf of AT&T. Never for a minute did I assume that the bill was not mine but rather explained that given that the address was wrong, there was no way I could have known I’d had an outstanding bill. And could they please send a paper copy.

Which they did. When it came it had no identifying features other than the AT&T logo and the outstanding amount of $155.25, which I promptly paid. But then I also called AT&T to make certain the delinquent payment would not show up on my credit record, as I had not been receiving notices.

Well, at this point in time it became clear that not only was the address associated with the account not mine, nor was the email address or even the phone number. WTH? Multiple phone calls (‘due to unusually high call volume our wait times are longer than usual’) later I was put in touch with the fraud department where a very unpleasant customer service representative ascertained that my identity had been stolen, that it was too bad I’d paid the collection agency, and that they, AT&T were not responsible for any of my troubles. But that they’d go ahead and launch a fraud investigation.

When I got off the phone I called the collection agency and asked them to reverse the charges on my card (they did not). I then called the bank to ask them to stop charges–it was pending and according to them, too late.

Several days later I’d not heard a peep from AT&T so called them this morning (twice, another hour wasted). I learned that A. rather than launching a fraud investigation, my account had been closed due to fraud and B. even if they did refund my $155.25, it would go to the 20 Chester St address and to the person whose bill I already paid. So I am not only out my money, I have a black mark on my credit.

I have filed a formal complaint with the attorney general’s office and will likely seek out a reporter interested in consumer issues as well. But what a freaking mess. AT&T, you suck.