Category Archives: Uncategorized

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.

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

FAITH IN HUMANITY & COVERAGE RESTORED

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In a word

Yesterday I received a phone call from the appeals manager at WageWorks. They had been inundated with letters/faxes/emails on my behalf. And, she said, it was slowing down my case. Because each time a new communication arrived, it had to be open, read, and filed. I couldn’t help myself and simply burst out laughing. “Yeah, I have a lot of friends.” To my great relief, the manager chuckled as well.

But then I asked her what she meant when she said ‘slowing down my case.’ I had been led to believe that I was now done with WageWorks, and that my second appeal, which I was hard at work on, would be going to UFP Technologies. The manager than explained that it was a two tier process, that my case was not decided by one entity alone. And then she said she would call me as soon as my second appeal had been reviewed.

We were in the weeds here, in a way I hadn’t anticipated. However, for the first time, the banter was friendly. And that made me hopeful.

In the meantime, I had reached out to UFP Technologies simply to confirm the mailing address. The woman I spoke to was also the person who would be making a call on my appeal. She reminded me that I had been late on a payment one other time, back when I’d first gone on Cobra. But she was also incredibly kind and seemingly understanding. She urged me to get the materials for my second appeal in as quickly as possible, so that we could bring this to resolution.

My second appeal was ready to go, barring a letter from Dr. Shaw per my cognitive challenges–she was going to send it to me last evening. I had been working with Gayle Petrick, a case manager from Patient Advocate Foundation, as well as Matthew Cortland, an attorney who believes that healthcare is a human right and who can be found on twitter under the handle MedicaidMatt. Gayle and Matt were (without charge) helping me to prepare my second appeal and Matt was also advising me as to options when and if it was denied.

The folks from LUNGevity and Bonnie Addario were working on my behalf behind the scenes. Chris Draft kept checking in, a representative from the American Lung Association called to see if they could be of assistance, and I was also contacted by the sponsor of the trial, Pfizer. At least one media outlet was interested in doing a story. Countless numbers of you reached out to me both for support and counsel. As I said at one point, I was turning over every stone possible. And if that didn’t work, then I’d just pick those stones up and start throwing them.

Fortunately, that wasn’t necessary. And I have to believe it was because of all of you and your constant stream of messages.

Half an hour after my first phone call from WageWorks (these people don’t call you—that in itself was a wonder), I received a second call. They had spoken to the plan administrator at UFP and my termination had been overturned. Furthermore, if I had any issues in the future, the manager urged me to call her.

I then received email confirmation from the woman at UFP–reinstatement for nonpayment is not something they do but they were making an exception for my, well, exceptional circumstances. And, that if I was to run into any more trouble or difficulty, ‘call or email me so I can help you.’

From here to hell and back. Just like that. Two of the longest, most stressful weeks ever have come to a close. Victorious. A crowd-sourced, group effort with an overwhelmingly positive result. At the end of the day, my coverage has been restored, but so too, I hope, is your faith in humanity. Together we really can overcome.

Thank you.