Monthly Archives: August 2018

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

Posted on August 29, 2018 | 9 comments

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.

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Posted in Clinical Trials

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Bounce

Posted on August 27, 2018 | 14 comments

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. ❤

14 Comments

Posted in Attitude, Uncategorized

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Deepest Indigo

Posted on August 26, 2018 | 34 comments

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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.

34 Comments

Posted in Attitude, Coping, Living with lung cancer

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The lung cancer blues

Posted on August 25, 2018 | 8 comments

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.

8 Comments

Posted in Attitude, Uncategorized

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Word.

Posted on August 23, 2018 | 14 comments

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.

14 Comments

Posted in Advocacy

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This life of mine

Posted on August 13, 2018 | 4 comments

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 😉

4 Comments

Posted in Advocacy, Connections, Uncategorized

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This really just happened

Posted on August 10, 2018 | 5 comments

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.

5 Comments

Posted in Uncategorized

Baller

Posted on August 9, 2018 | 2 comments

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.

2 Comments

Posted in Attitude, Clinical Trials, Uncategorized

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My happy place

Posted on August 5, 2018 | 12 comments

All three of my kids are within an hour drive now.

I can’t tell you how happy that makes me.

The last five years have been both challenging and ripe with opportunities for personal growth. Living alone has allowed me to get back to me, in a big way. However, this independence has not been without collateral damage.

When I left my marriage I ripped apart the fabric of my family as well. Changing my own circumstance negatively impacted the lives of those I love, and it was not a decision made lightly. It is never easy to be the agent of change.

I think I can safely say that we have all adjusted and are in a better place now. Certainly I understand far better, well, so very much. It had gotten difficult to see through the lens over my former existence and it would not be hyperbole to say I see things clearly now.

Having my son August in house has been wonderful. I had forgotten how much I enjoy the simple act of cooking for and eating with another. And his brother has been coming by more often and it is a joy to see the two of them interacting.

I’ve also been able to spend some quality time with my daughter Jemesii—last week I dropped by her to store to gift her with a crown; this girl was born a queen. I have my scan review in Boston on Tuesday and I will be meeting Jemesii for breakfast beforehand.

My little princess

I’m writing everyday, squeezing some art in and working on liquidating my vintage clothing business. Busy, busy, busy. Happy, happy, happy. Alive.

12 Comments

Posted in Cancer and our children, Uncategorized

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Something’s not right here

Posted on August 3, 2018 | 6 comments

 

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.

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Posted in Attitude

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