You know what I’m pissed off about right this second? I should be planning something fun to do with Dan before chemotherapy starts, and instead I’m fighting insurance to get them to pay for the roughly $10,000 in temozolomide I’m going to need.
This is seriously getting so old. I’ve had so many different kinds of health insurance during this years-long ordeal with the brain tumor: employer sponsored, ACA marketplace, Medicaid, and Medicare. And not one of them has ever covered all they claimed to.
I’ve lost count of how many times an “oh yeah, that’s definitely covered” has turned into “oops, nope, we won’t be paying for that” right at the buzzer.
And let’s not forget that year-long fight with Lincoln Financial Group that required lawyers and multiple appeals to get the company to pay my disability insurance like they promised they would. Being without that supplemental income for 12 months didn’t exactly do great things for my bullshit credit rating.
“Sorry, you can’t buy a new car to get to your cancer treatments because you got cancer, your health insurance carrier refused to pay for a lot of stuff, you have outstanding hospital bills, a laughably small income, and now we’re pretty sure you’re a high-risk for defaulting on a mortgage. Maybe if you were better with money and didn’t buy so many lattes.”
Guys, I totally should have done a better job managing all that money I’m not allowed to have. It’s true.
Anyway, I’d also like to get my house somewhat cleaned and organized before my day-to-day is just me throwing up and handing the vomit bag to Dan. But I’m right smack dab in the middle of Can’tlandia right now. The unsick will think I’m exaggerating and lazy. That I could fold the laundry if I wanted to bad enough. Fact is they just don’t know yet. They don’t know what it’s like to be physically and mentally incapacitated by Overwhelm™. What I characterize as executive dysfunction on dexamethasone.
That’s a whole other thing. Worrying about being put on dex again. Keeping my fingers crossed I don’t need it, because my legs will just buckle if I put on any more weight.
Okay, that’s all for now. Don’t let my pissy sarcasm distract from how grateful I am for the outpouring of support I’ve received since my announcement. Sometimes you gotta vent the Instant Pot. Know what I mean?
The past couple of weeks have been eventful, just not so much in my online life. Mom came to our house here in Urbana to help us with landscaping. (And when I say helped, I pretty much mean she did everything because she is the best mom on the planet.)
There are plans in the works to get the shutters and trim on the house painted, but first: estimates. It really makes me happy to look at the prettied-up yard this year. Because last year during the pandemic, we didn’t have the money or motivation to do much of anything with the yard.
After Mom spent a few days here helping us out, I went back to stay with her for a bit. One of my brothers and I worked on getting more things sorted at her house. My Dad had a pretty ginormous model railroad thing going in the basement, so Ryan worked on that while mom sorted documents and I shredded the stuff that couldn’t be recycled.
It was hard work in that it tugged a lot of nostalgic strings, but it was good to get Mom several steps closer to a more manageable household. One evening she and I assembled a lateral file cabinet together. The instructions were terrible (there were no words, only pictures) but after two hours, we got it done and she made me a root beer float as a reward.
We also talked more about Dan and I moving to be closer to her and my brother and sister-in-law, and we are thinking the best idea might be to make a separate living space by finishing Mom’s basement. My brother the architect is willing to help us with plans. Also, because Mom’s place is only about 30 minutes from St. Louis, it would mean we’d be closer to Siteman Cancer Center if/when I need treatment again.
Speaking of the cancer stuff. I did have a consultation with a neuro-oncologist at Siteman last week, and the news actually brought me a little relief. The doctor said that it’s not clear whether the growth they’re seeing on my recent MRIs is cancer growth (if so, I’m a little ahead of schedule based on what they know about my kind of tumor) or if it’s radiation necrosis (if so, the timeline seems to fit).
At the moment, the only way to be certain is for them to biopsy the area they are seeing and look at the cells under a microscope. Having had one brain surgery already, I’m not really excited about the idea of another one. And because of the location (my medulla) doctors aren’t really eager to start digging around in there either. For now all the doctors involved in my case seem to be recommending another MRI in three months.
I think a huge factor in waiting is that I’m not experiencing new or worsening neurologic symptoms and the growth is small. With a little time it could become more obvious which treatment plan is needed, and in the meantime I can live my life knowing that there are treatments available for either scenario.
Anyway, I’m still a little uncertain when my next Zentangle video will be as I still have a lot of to-do’s that take priority. But I am feeling the itch to draw again and set up my bullet journal for May (I skipped April) so that I can keep things sorted a little better in my mind.
WELL FUUUUUUUUUUCK. It’s a couple of hours later, and I just heard that they want me to do low-dose chemotherapy again. I mean, it makes sense. I don’t disagree with their recommendation. But I was just starting to see some daylight after losing my dad, and now I’m preparing to be broke, fight insurance all over again, and just generally have no energy to even wipe my own ass.
Hello, everyone! In lieu of my typical written post today, I’d like to share a video with you. A couple of weeks ago, Rudy Fischmann of Brain Cancer Diaries and I chatted about what it’s like to live with a brain stem tumor for his vlog series.
We talked a little about my road to diagnosis, the hassles of insurance, and also about the things that keep us going and help us get over the hurdles that brain cancer has put in our way.
Take a few minutes to browse the other episodes on the Brain Cancer Diaries YouTube channel — there’s a ton of great stuff there. Rudy interviews other cancer patients (not just brain cancer patients) and gives you an inside look. If you live with cancer too, I promise you’ll find some comfort in the shared experiences of Rudy and his guests. And if you don’t live with cancer, you’ll gain an appreciation for all the ways the Big C changes a person’s life — for good and bad. Perhaps you’ll even be better equipped to support your friends and family staring down their diagnoses.
Anyway, I am in awe of the fantastic, creative job Rudy does editing his videos, and this one is no exception. The amount of time and energy that must go into the content he creates for the world! Support him and his channel by liking, following, and subscribing to Brain Cancer diaries on YouTube and Instagram. It’ll make you a better person.
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.
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.
My last post about LFG canceling benefits on a brain cancer patient (me) contains a lot of text buried in an admittedly difficult to read PDF format. I hate how inaccessible that is, so I have uploaded audio of me reading that post to my YouTube channel. (Apologies that’s it a little rough around the edges, I’m doing the best I can with what I’ve got.)
In the audio file, I even read the progress notes from my primary doctor and the report from Lincoln Financial’s shady hired gun, Dr. Lee Hartner.
I urge anyone considering purchasing a long term disability policy from Lincoln Financial Group to save themselves the trouble and the heartache. They are dishonest and will deny benefits to anyone—including a patient like me who has an inoperable brain stem tumor. If they don’t cover a patient with brain cancer, then who will they cover? I’m afraid the answer is no one.
If you would prefer reading the original post, click here.
Finally, if you have been denied long term disability benefits by Lincoln Financial Group and would like to share your story on this website, please contact me. This is not an isolated incident. The company, its employees, and the third-party doctors who are paid to submit false claims about patients need to be held accountable for their actions.