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.

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.

My happy place

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.

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.

And as if you haven’t heard enough…

My friend Casey—aka Mighty Casey Quinlan, interviewed me for this week’s Healthcare is Hilarious installment and we discussed my Cobra debacle. One more time. Happy, shiny, glittery ending and all.

Support Casey (a formidable individual and advocate too) and give a listen here.

The naked truth about losing health care coverage

I learned a thing or two from my now-you-have-it-now-you-don’t insurance debacle.

First, that individuals with expensive conditions like a cancer that’s turned chronic are sitting ducks. We represent one of the worst case scenarios for the health insurance industry—someone who requires costly long term care, effectually increasing burden to other policy holders as well as reducing company profits.

As keeping us alive is so very expensive, we are inherently vulnerable. No insurance company actually wants us on their policy and, if pre-existing conditions were still a valid reason to deny coverage, people with cancer would be shit out of luck.

Because we are incredibly vulnerable, we have to make absolutely certain we never provide a valid excuse for booting us—like I just did.

Which is why I was so terrified. Given that I’d missed a grace period, I understood all too well that no one was legally compelled to restore my coverage. From a business perspective it made perfect sense to deny my appeal. The fact that the denial was overturned underscored an exceedingly important point: this was not a legal victory–it was moral.

I also learned the importance of having multiple plans of approach. Not just A, B, C, but rather A, B, C, D, E and F.

When I first realized I’d missed a payment I called WageWorks and, after confirming that my coverage had been suspended, overnighted an appeal. It took multiple phone calls, a second faxed appeal and a full week before I learned that my appeal had been denied. Scratch plan A.

Plan B was to send an email to my oncologist as well as the director of the cancer center–as Dr. Shaw is my personal goddess (yes, I do understand that I have to share her) and the cancer center is my home away from home.

I also initiated plan C, posting a clarion call beseeching everyone I know to contact WageWorks on my behalf.

Plan D was reaching out to LUNGevity; an organization I’ve worked closely with.

And then plan E, F and G happened organically as a result of my multiple requests for assistance, as various people reached out to the trial sponsor, LUNGevity hooked me up with Patient Advocacy Foundation and some pals on twitter introduced me to Medicaid Matt.

Well my friends–it really does take a village. And it was you, the villagers, who made this happen. Plan C, as it were.

Astounding. Heartwarming. Empowering.

The big surprise was who offered little help: Massachusetts General Hospital. My oncologist was prepared to provide documentation per my side effects but aside from also offering to have her reach out to the insurer, MGH came back with this response ‘ We don’t have any other solutions at this time, but let us know how things pan out.’

Not a no but also not the ‘don’t worry, we’ll work this out’ that one would hope for from the folks (second family?) ensconced in my home away from home.

Or, if you discard the warm and fuzzy stuff, the institution that I have faithfully patronized for thirteen years and counting–making me one of their best customers. The cancer center where I served on the Patient Family Advisory Council for four years. I’m on the Wall of Hope, in a permanent display in the museum, have been honored at The One Hundred and, along with Dr. John Iafrate, was a calendar girl. And, of course, I’ve been a source of much positive publicity. Just the sort of patient, who, from both a moral and business perspective, you might want to provide support to.

The take away? Don’t give up, don’t ever give up. Have not one plan but many and don’t be afraid to use them all. If I’d stopped at B, I’d be screwed now. And finally, it’s not necessarily who you know, it’s how many you know. Because we/us/you are a force to be reckoned with.

xo