This is how Anastasia the Adenoma looked in 2010. Thanks to an anti-healthcare GOP Congress and #45 in the White House hell-bent on depriving Americans of healthcare, I have no idea what Anastasia looks like now.
First of all, I’m not asking y’all for money again. Thanks to many friends on DKos and in Netroots Nation and with Moral Monday and a whole gigantically glorious community of friends, I have what I need to get to doc appointments when necessary and cover all my meds, and I’ve got a daughter who left her journalism job in Washington, D.C., to come home in September to serve as my drill sergeant caretaker. Life is tolerable and my daughter Sibel makes it even better. I love spending my life with her! Partly because she’s a bad-ass activist who’s been pepper sprayed multiples times during Black Lives Matter protests, Moms Demand Action rallied, and a certain inauguration ceremony.
This is a diary about cruel and unnecessary treatment we are being forced to endure if we need healthcare in this country. It’s a call to the phones and the emails and our Congresscritters’ district offices.
I’ve spent much of the past two weeks calling members of the US Senate Committee on Health, Education, Labor and Pensions. Sen. Richard Burr of my own North Carolina sits on this committee. And sits. And sits. He’s an excellent sitter, the best that lobbying money can buy.
So I’m a grandmother, a cat lady, an activist, a person of challenged physical abilities, a retired writer/editor, a very bad harmonica player--and one of thousands of North Carolinians and perhaps millions of people in the United States with brain tumors.
Mine (which I’ve named Anastasia) is noncancerous and slow-growing, but it’s complicated by something called empty sella syndrome. The pituitary sits like a grape in a little pocket at the base of the brain that’s called the sella turcica. The name “empty sella” us kind of a misnomer, because what it actually means is that the skull bit surrounding this pocket is a bit porous and permits cerebral spinal fluid (CSF) to seep into what’s supposed to be empty but instead is filled with CSF that puts pressure on a pituitary adenoma in different ways on different days.
Huzzah! Adventures galore!
Anastasia has been inoperable since diagnosis, because my health post-breast cancer and in the midst of chronic leukemia and a bunch of other organ recitals is fragile and I would have a tough time surviving at least three or four surgeries within a very short period of time to let her go. The first operation would take tissue from one of my abdominal organs, then the neurosurgeon would open the base of the skull and wrap the sella turcica with my own organ tissue to keep CSF from flooding the turcica. After a bit of time for that to heal, Anastasia could be removed with minimum concern that CSF would put pressure on the wound and possibly result in an infection, such as meningitis.
Right now, I’m not healthy enough to undergo all that, and my neurosurgeon estimates an 85% chance of developing meningitis or another life-threatening infection. But the option must remain open, in case something goes wrong and an emergency surgery series is required.
I have one of the world’s top neurosurgeons for this type of condition. The dude has stuff named after him—instrument and procedure and probably cocktail in the postsurgical lounge. He believes medical technology is evolving quickly to treat patients with active pituitary adenomas complicated by empty sella syndrome. It’s just a matter of keeping me going, symptom by symptom, till science catches up. No problem! I’m round as a peach, and round bodies are totally built to bounce.
But he can’t do anything if he can’t see my brain and the tumor. That’s why I need regular MRIs to scan the brain and hone in on what’s going on with the little tumor and the CSF that seems to push it around this way and that every day. I’m supposed to have a rigorous MRI series done every October/November to check tumor growth and how much mischief is caused by the CSF pressure.
But there’s a catch. It used to be that if doctor thought a particular surgery or course of treatment would help a patient, the two of them could discuss options, research them, come to a decision, and--voila--treatment take place. But healthcare in the United States is different now; the Affordable Care Act (ACA, or Obamacare) is being rolled back, and more medical decisions are made not by doctors and patients but by government policy and the whim of insurance companies.
The past two years have further attacked the teamwork of patient and doctor. After Donald Trump was named president and our Congress became overwhelmingly Republican, Obamacare began to be dismantled and the White House and predominantly GOP Congress members stirred the pot of reducing, changing, or even eliminating Medicare, which has a significant impact on private Medicare supplemental insurance, often known a Medicare Plus or Medicare Advantage.
Those of us with serious brain tumors found that, starting in November 2016, Medicare and Medicare Plus/Medicare Advantage private insurers who manage Medicare benefits stopped preauthorizing brain scans/MRIs for fear that changes to Medicare will stiff the private insurers and leave them with the costs of lengthy, complicated MRIs and other procedures. So they simply stopped preauthorizing these MRIs as a group, though physicians can undergo lengthy and often frustrating attempts to appeal the refusals on a case-by-case basis. It’s a very difficult process.
My MRIs are conducted in two series: more than 700 images taken without contrast fluid and another 700 images with contrast fluid. This gives my medical team the best possible look into what’s going on with that truculent empty sella and its pressure on the tumor.
My UnitedHealthcare Medicare Advantage has zero interest in being stuck with that bill if Medicare goes down the drain. Scuttlebutt says this may happen to some degree or another.
Thanks to Congressional threats to Medicare, even we patients at great medical centers such as Duke University Hospital and Clinics and other medical centers all across the U.Sl are left with few options: pay out of pocket for our MRIs; leave the country as medical refugees to get our MRIs in countries such as Italy, France, or Australia where there are Centers of Excellence for this type of tumor and context, where even tourists receive free medical diagnosis, treatment, and post-surgical care; sign up for every public radio pledge drive ever in the annual cycle of public-radio pledgeathons that off trips to countries with universal care; raise ten of thousands of dollar for our care through GoFundMe; or simply give up and stop the constant, draining running of the gerbil wheel to meet our medical needs, pay for housing and transportation, buy food, etc.
As are so many other patients, I’m now dirt poor. My thermostat in the winter hovers between 57 and 62 degrees. I get groceries from a food pantry but often have to buy produce, as food pantries offer a lot of “filling” food such as pasta, bread, rice, and bean--which folk with pituitary-involved diabetes can’t eat much of. Friend chip in with produce boxes or deliveries of fresh veggies, homemade soup, and other goodies. Friends also have helped get my car back when it was repossessed when I had to choose between a hospitalization and making the car payment. (Duh.) They’ve helped me garden, bought new brakes and tires for the car, driven me around when I can’t drive on my own, saved a few of my teeth from rotting out of my mouth, and kept me going with volunteer efforts, political volunteering, and just hanging out playing Cards Against Humanity.
I’m just incredibly blessed with my community of friends and family. But sitting in my neurosurgeon’s waiting room with other patients who’ve traveled here to see him while he’s visiting North Carolina … it just seems so fucking wrong that I should have support and care and people who will never, ever let me stop treatment when there are so many others on their own and no one to rub their backs and hug them and share a box of Kleenex when a day is too hard to bear.
These days, I’m urging senators on any health-related committee to press the Committee for Medicare Services to offer authorization to brain-tumor patients whose physicians urge us to undergo regular MRIs.
I realize this is one issue of thousands. And I realize that I’m incredibly lucky to have survived this long with tremendous help, love, and care from my community of friends and family. But so far, I’ve missed three MRI sets and my neurosurgeon has no way to know that sometime I can’t see out of my right eye and that sometimes I experience such cognitive deficiency that I have to put Post-It Notes on my stove telling me not to turn it on because if I turn around, I’ll forget the stove is on. This brilliant surgeon, who has saved countless live all over the world, lacks the observational tool that determine whether signs of loopiness or frequent fall or having to ask my daughter 12-15 times a day what day it is or whether it’s daytime or nighttime are just signs of old age (at age 59) or are caused by Anatasia and her teammate CSF.
This brightest-of-the-brightest surgeons has been denied the tools he needs to observe and treat his patients on Medical and Medicare Plus/Advantage private insurance. BUT ONLY IN THE UNITED STATES.
Healthcare for All is what most civilized countries do with no detriment to their economies, GDPs, labor pools, or worker productivity. Their roads still work, their kids get good educations, they can get in-home health care after a surgery or severe illness. They can get gas or electricity for their car, buy an entire gallon of milk at a time if they want, their country isn’t crippled by ensuring that their parents get medication to stave off diabetic ulcers or middle-of-the-night falls caused by hypoglycemia or ketoacidosis because they can’t afford insulin or health, low-carb food rather than rice and macaroni.
Exactly what is it that keeps the U.S. from providing the exact high-quality MRIs that Italians get for $50? Who supports such heartlessness yet keeps getting re-elected? Are we as American that callous, that soulless, that oblivious to the fact that healthcare vs. a healthy nation is not a zero-sum game? I don’t want to believe that.
I’ve been contributing to FICA/Medicare for 47 years, yet Sen Richard Burr’s aide who took my call asking for preauthorizations for brain-tumor patients told me, “We are working hard to fix the problems of our broken Medicare system. I suggest you wait until we come to consensus, and then your care will come to you.” When I responded that sometimes I go to bed and wake up in the middle of the night and simply fall to the floor or worry that I won’t wake up at all, he told me, “Well, it’s sad to say, but we all must go sometime. This might be your time. We can’t change the law of the land for everyone who needs something. But I will pass your concerns in to the senator.” Gee. Thank.
My neurosurgeon has started taking some of his patients in most dire need to centers of excellence in Italy, France, Belgium, Australia, etc. There they can get free or astonishingly inexpensive yet state-of-the-art MRIs and other diagnostic procedures.
Instead of revamping Medicare, why doesn’t the GOP just issue us airplane vouchers so some other country can deal with us? They can be rid of us. We can become medical refugees, ne’er-do-well hobo exiles instead of perceived leeches sucking off the greatness of America.
Apologies for the rambling and bitterness. But I really don’t think it’s time for me to die based on someone’s lobbyist friend’s spreadsheet--or die at all just yet. And I’m one of so many. And have friends all over the globe who help me raise funds for the latest emergency. But running a GoFundMe twice a year for a look on what that tumor and cerebral spinal pressure are doing and when a surgical solution is available? Srsly? Even perfectly healthy people may not have the stamina for that.
Please call members of the Senate Committee on Health, Education, Labor and Pensions and ask them to communicate with the Committed in Medicare Services to permit preauthorizations for those of u with physician-recommended MRIs.
We can have America a terrific place to live and still have Americans live long enough to take part in making that happen. To do anything less is heartless, cruel, criminal, and depicable.
Please call.
![Kim Erickson Yaman among those arrested for knocking on the gallery door to gain access to the NC House of Representatives for a "public" vote](http://images.dailykos.com/images/340553/story_image/Kim_arrested.jpg?1482095561 "Kim Erickson Yaman among those arrested for knocking on the gallery door to gain access to the NC House of Representatives for a "public" vote")
