Yesterday, a friend sent me a message because she was worried that I hadn’t posted the results of this month’s MRI, and that’s when I realized I’d been absent from my blog and social media and I was unwittingly worrying people.
My last MRI was with new, local doctors and so the switch has complicated getting my results. See, when my MRI results are reported to me every four months or so, the current result is always compared to the most recent result. For the past several months, that result has always been “stable”—meaning there’s no discernible change in the size or shape of the brain tumor.
But the new doctors who are interpreting the imaging results from last week don’t have the most recent prior MRI (from March 2019) for comparison. They only have images from from February 2017, when I was first diagnosed.
So because I didn’t have anything official to report, I didn’t say anything. I figured I’d just wait. Well, it’s taking even longer than I anticipated to get the official results, and I realize now that my silence was a little worrying. Sorry about that! I’m not sitting on bad news over here. There just isn’t any news. As soon as I hear, I will report back to you all on my blog and an on Twitter.
As far as symptoms go, there’s no reason for me to believe that the report won’t be “stable” again when I finally get it. But I’ve learned not to take things like that for granted either. So we’ll see what we see.
In the meantime, I have returned to my palliative care doctor a couple of times, and he is helping me work on managing my most burdensome symptom: fatigue. So I have a couple of new prescriptions that I’ve started and he’s helping me adjust the dose. I’m pretty optimistic about getting that sorted soon, but in the meantime I’ve just been focusing on my health and avoiding Twitter. God, it’s a cesspool of Trump and his related shenanigans these days.
Anyway, those of you out there with chronic health issues know how tiring and time consuming it can be to track and monitor your progress on new drugs. Whether it’s cancer or fibromyalgia or arthritis, adding a new treatment into the mix can really complicate the balance you’re trying to strike between each symptom and side effect. That’s what’s taking up so much of my time at present.
As for the long-term disability fight, my attorney is still working on the appeal with Lincoln Financial Group. These things take forever. But, as always, in the meantime I encourage you not to give them your money, and I encourage you tell the people you love not to give them their money.
A friend of mine is working on an article about my battle with Lincoln Financial Group that I anticipate will be published this month or next. I’ll be sure to post a link when that’s live too.
So I’ll be back with an update when I know more. Watch this space!
Things are changing around here, and I’ve been meaning to update you all on my Lincoln Financial Group appeal for a while now. Better late than never, right?
The first thing I have to report is that last week I signed a retainer agreement with a law firm, and I now have legal representation in my fight against the jerks at LFG. It took me a good long while to find an attorney. I’m too tired to explain why lawyer shopping feels like such an insurmountable burden, but just trust me: it is. Having brain cancer doesn’t help, but that’s not even the only reason why it’s so hard.
The important thing is that now there’s someone else out there to deal with the Anns and the Sherris of the world. Those loyal, dutiful insurance company employees who (I assume) must pretend every day that they wouldn’t be scapegoated in a heartbeat by their corporate overlords.
Ahem, sorry. Promised myself I wasn’t going to give in too much to the anger today.
In the meantime, I’m going to try to enjoy the fact that I no longer have to restrain myself from signing off every email to Ann or Sherri (or whoever the hell it is this week) with, “Thank you for your kind attention to this matter. Now get diarrhea, you miserable cow.”
(I probably don’t need to say this if you’ve been reading my blog for a while, but if you’re new here you should know that my Lincoln Financial Group appeal doesn’t exactly bring out the best in me.)
OK. So. I think I’ve mentioned it before, but I’m not actually able to sue LFG yet. I have to complete a second appeal before that can happen. (But I got an email with the subject line “Suess, Emily v. The Lincoln National Life Ins Co” and thought it would make a nice blog title.
Anyway, if they win the appeal for me, my benefits will be reinstated, and the law firm will deal with LFG representatives from here on out. I never have to talk to them again. (Sounds nice, right?)
However, if this appeal is denied too, then I can sue. (That’s the way my long-term disability policy is written.) At that stage these kinds of things typically get settled out of court. I’m no expert on why that is, but having been around the block now a time or two, I’m reasonably confident they settle because 1.) it’s cheaper, and 2.) THEY FUCKING KNOW THEY’RE WRONG.
But this isn’t really about right and wrong for the insurance company, is it? It’s about shareholders and CEOs and making easy money off the backs of the sick, poor, and disabled.
Quick aside: This is your daily reminder not to give your money to Lincoln Financial Group.
Moving on to thing two: I have a new oncologist. She is local to me here in Champaign-Urbana and part of the same health system (Carle Foundation Hospital and Physician Group) that employs my primary physician.
I’m not so much dropping my first oncologist as I am just adding a new one. I will get MRIs and the results here locally, but she will confer with the guy who, at this point, knows my tumor better—you know, if the need arises.
Although the drive to St. Louis wasn’t impossible—and everyone I’ve dealt with at Barnes-Jewish was pretty amazing—it was hard to make that routine trek to Missouri. Plus, finding the money for traveling even just a few hours is a problem when you’re unable to work and the disability benefits you’re owed are revoked by insurance company clowns and the profiteering MDs they find to make false claims about your health, MDs like Samuels and Hartner.
So Dan and I met with my new oncologist, Dr. P, on Monday, and although I was a little nervous about it (I have anxiety issues when it comes to doctors as a result of some terrible experiences) I really liked her. Dan did too. As a result of the consult with her, I’m picking up yet ANOTHER doctor.
Tomorrow morning, at Dr. P’s suggestion, I will be meeting with a palliative care doctor. When Dr. P first said the world “palliative” I was like, Ack! No! But it was because I was mistaken about what it meant. I thought it was terminal care, but it’s actually getting help with managing the symptoms of a serious and complicated illness like cancer.
On the drive home, I wondered out loud to Dan why my other oncologist had never mentioned this to me before. But, you know, maybe he did and I just was so overwhelmed I couldn’t or wouldn’t consider it? Or maybe they assumed I was already getting something like that at home? I honestly don’t know. But maybe the palliative care doctor will have some ideas about helping me with the laundry list of chronic symptoms I’m always dealing with. I’d kind of given up on that sort of thing. Most of the time when I tell a doctor that I’m in chronic pain or my nerves don’t work right or I have migraines, I just get shrugs. Maybe this will be different.
Did you go through a Lincoln Financial Group appeal? How did it go?
Dear Penn Medicine Doctors,
If Lincoln Financial Group was paying, would you say a woman with an inoperable, malignant brain stem tumor was “not disabled” and in “remission” despite her attending physician’s professional opinion to the contrary?
If the price was right, would you pretend you know best when even the patient’s own oncologist defers on the matter of her disability?
If the paycheck was fat enough, would you attest to a lie that stripped a disabled person of the long-term disability insurance benefits she paid for?
At least one of your Penn Medicine colleagues would. Shoot, he’d probably even say you don’t know how sick or disabled your patient is if the gig paid enough. I mean, it’s so easy for him to do when he never has to look anyone—doctor or patient—in the eye. He just fills out a report et voila! Robs another cancer patient of her financial security, pads his own wallet.
I wonder if, when typing up his misleading report about me in May, Dr. Lee Hartner figured I’d be too timid or weak to hold him accountable for his profiteering side hustle.
(He should’ve Googled me first. I’ve been writing open letters, blogging about cancer, and just generally sticking up for myself for years.)
Anyway, because individual bad actors like Hartner make it possible for Lincoln Financial Group to rip off disabled consumers and besmirch the good name of do-no-harmers everywhere, I asked Dean J. Larry Jameson to comment on the issue. The way I see it, this is a matter of public interest. If this sort of behavior is the kind of thing Perelman School of Medicine looks for when hiring faculty, maybe patients and med students ought to know.
Unfortunately, Jameson won’t even acknowledge I exist. I guess he can’t be bothered to comment on how Hartner’s lies reflect on Penn, on the Perelman School of Medicine, and on the profession.
Crazy, right? I mean, if Dean Jameson thinks Hartner’s behavior is above-board and medically ethical, why wouldn’t he just say so? And if he thinks it’s unethical, why wouldn’t he release a statement quickly, before the Hartner Stink™ had a chance to get all over the rest of you?
Sorry for the tangent. Back to the original question, which is: Would you do it too?
P.S. Maybe you can help me out with another question I have: Why is it only insurance fraud if the patient lies?
It’s the 30th again, and that means there’s a freshly released chapter of Who You Gonna Believe over on Patreon. Chapter 4 is titled “Liar, Liar”, and this month we reach the part in the story where Rodney, my first husband, confesses to being a compulsive liar. (Yes, of course, he picked after we were married to come clean about that.) I also spill the beans about the night I confronted him for cheating.
Anyway, thanks to my Patrons for supporting this project! Without it, I’d be a right mess. As it is, I already spend way too much time languishing somewhere between “this brain tumor is killing me too fast” and “this brain tumor isn’t killing me fast enough.” (What can I say? Cancer is depressing. Medical bankruptcy doesn’t really help.)
However, knowing that people out there are reading my words gives me a sense of purpose, and I really need that right now. So thank you.
If you’re not a Patron yet but you want to be, it’s pretty simple:
- Go to patreon.com/emilysuess.
- Make a $1 pledge.
- Read my memoir.
Every time a new chapter of my memoir is released, you’ll be notified. Plus, you’ll see your name in the spotlight with all those other wonderful people when I post next month.
I applied for SNAP food assistance benefits this week. For those of you who don’t know the joys of being disabled and impoverished just on their own, let me tell you how thrilled I am to have had the opportunity to jump through these hoops while working my way up to the second-worst migraine I’ve ever had in my entire life the past ten days.
Actually, let’s skip the part about my migraine. Unless you have them, you won’t understand, and I’ll give myself another trying to explain it.
In order to qualify for nutritional assistance benefits, you have to verify that you have no money. (Which seems weird, doesn’t it? Prove a negative! Demonstrate you’re begging for food assistance because you need to eat and NOT because you enjoy defrauding government agencies! Peasant!)
Oh! I should clarify, the individuals working at the Illinois Department of Human Services who helped me this week. They were lovely people, working to make sure humans get things they need to live. (Well, except for the security guard, but I think every government facility needs an antagonist, don’t you?) The people who treat you like trash are typically “pro-lifers”, libertarians, friends, and family.
Anyway, our case involved submitting 24 pages of supporting documents in addition to the benefit application itself. There were four ways I could submit those documents according to the letter: drop them off at the IDHS office, fax them, mail them, or upload them to the abe.illinois.gov case management thing-a-ma-jig.
Uploading them seemed like the best option, except it wasn’t actually possible. So then I was like, “Well, I’ve got one stamp left.” But have you ever tried to tri-fold 24 pieces of printer paper and stuff them in a business reply envelope? Then I figured, “Well, I don’t have a landline, but I could do one of those free fax services online. But turns out it costs money to send faxes exceeding three pages with those things.
“Dan! You’re taking me to IDHS today!” He was gearing up for a trip to the pharmacy. “Don’t leave without me!”
Can I just say that parking at IDHS in Champaign County is absurdly inadequate? Even with my accessible parking placard, there wasn’t anywhere to put the car. “Can I drop you off?” Dan hesitated. You could tell he didn’t really like the idea.
“Yeah, do it,” I said. “I’m not coming back here later.” I didn’t bring my mobility aid because in that particular building it’s easier to grab Dan’s arm. But without Dan’s arm? We were taking a bit of a risk.
I didn’t fall though, I just felt like I was going to fall for a solid 15 minutes. (You can’t just leave sensitive documents in a box somewhere, you have to stand in line and physically hand them to the guy sitting behind the Plexiglas.)
Anyway, here’s hoping we get approved soon. Dan and I can really eat well on this SNAP stuff. If it’s anything like 2017’s season of medical bankruptcy, we could get $15* a month. TO SPLIT BETWEEN TWO PEOPLE.
It’s a really good thing Dan and I have this social safety net here, since I didn’t bother to buy a long-term disability insurance policy in case something like a brain tumor ever happened to me one day
*Don’t buy toilet paper with SNAP benefits. I’ve never seen it happen, but legend has it conservatives and libertarians will sacrifice a kitten if you try.
As the news of my brain cancer and Lincoln Financial Group horror story garners interest, more people are asking how they can help—even complete strangers. I’m really grateful, but not always sure what to suggest. I figured if I created a list, people could pick what works best.
Donations and Financial Support
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- Contact me if you or someone you know has also been harmed by Lincoln Financial Group, Dr. Brian L. Samuels, Dr. Lee P. Hartner, Professional Disability Associates, or Reliable Review Services.
- If your employer offers Lincoln Financial Group insurance policies and/or financial products, ask them to switch. Tell them you don’t want to be ripped off.
- Send an email to Dean J. Larry Jameson. (Copy & paste, takes 30 seconds.)
- Write a letter to the editor of your local paper.
- Ask a journalist to cover the long-term disability industry.
Share Your Stories
- If you work for (or used to work for) Lincoln Financial Group, Professional Disability Associates, or Reliable Review Services and have first-hand knowledge of business practices, contact me or reach out to ProPublica.org.
- If you have a related story you would like me to share, whether you have brain cancer or another disability or illness, send me the link.
- If you or someone you know has a story that needs to be told but need a place to publish it, contact me.
This week I had a phone conversation with an attorney that left me feeling really depressed, like nothing gets better. Ever.
While we talked about the circumstances of my long-term disability denial from Lincoln Financial Group, the attorney asked if I was permanently disabled. She wanted to know: was I going to get better?
“It’s permanent. It’s inoperable,” I told her, “to just be totally frank, things are only going to get worse for me.” Which, you know, barring some miracle is just the truth.
If you don’t have an inoperable brain tumor, you might not know how uttering something like that out loud can settle in your bones while your marrow and your bed team up like opposite-ended magnets to keep you trapped there.
But back to the phone call.
I had spoken with the same attorney in April, and I remember liking her then. I mean, sure her contingency fees were high, but aren’t they all? This call though, it had an entirely different vibe. I pulled the cell phone from my ear, stared at her name and phone number on the display, and made my most incredulous “bitch, please” face while she talked.
“Well, normally I charge a third,” she explained how much of my benefit she would take if she won my appeal, “but your benefit is so small. That’d only be, like, $300 [a month for the rest of your life]. For your contract I’d have to do…probably 50%.”
I was staring at my notes from my conversation with her in April. I’d scribbled “40%” down in three different places. I mumbled something polite, while trying to stifle my ego, but I was immediately offended that the numbers kept changing. Not only did her rate go up since our last chat, but she’d just explained I’d basically be paying a poor penalty.
Then she said, “I have to make some money, you know.”
And that’s where she lost me. For good.
I paid for the long-term disability policy in question to protect me in the event I became disabled and two doctors—and now potentially a lawyer—are trying to pad their wallets?