Et Tu, Cancer? Part 1 - The Birds

Recently, I was diagnosed with bladder cancer. But, you know me, not just any ol' cancer, but a tumor that started to grow in an pre-existing diverticulum of my bladder. A cancer that is aggressive and not treatable with chemo or radiation. A cancer that can only be removed by removing the bladder itself. And the prostate. And the pelvic lymph nodes. Now, I should have had surgery many months ago, but that story is not what this article is about. That story is found here in this excellent article.

With these series of articles, I wish to express how I have felt during this time and will feel in the times to come. It won't often be pretty and my prose will not often be below an "intense R rating". Past and present and future tenses might be maligned somewhat, but so what. These articles will also not be in any particular chronological order. I'd like to begin with a story just before and after my oft-delayed surgery; what wound up being my first surgery.


"THE BIRDS"

When the surgery with my new urologist was finally set, May 20th (a month after my birthday), I was also awaiting my biopsy results. Two days before the surgery, the obvious (to some) was confirmed: the tumor was malignant. That didn't surprise me much, but I was more than a little fucking pissed off because when the tumor was first seen (in February) it was about 1cm in size in the diverticulum. Now it was well over 3cm. My urologist/surgeon was concerned he couldn't remove the entire tumor without perforating the bladder. The surgery was scheduled to be day surgery and it was also non-invasive. Think of a long tube-like instrument that goes you know where and then into the bladder.

It was partially successful. The doctor removed as much as he could but not the rest for fear of the perforation, which would have been bad, going from stage 2 to stage 4 cancer with all those cells now floating around my body. Also, the tumor had now grown to 5cm at least. So, I went home. On some pain killers and such. I sat in my room for awhile - in a daze. My mind wasn't quite remembering everything due to whatever it was they had knocked me out with. I recall labeling it "alien probe forget drug". I think after sitting awhile, I had a swig, then a smoke and fell into a strange semi-drugged induced and mostly exhausted sleep. The next morning, only in slight pain, I made some coffee and went outside whereupon I saw this:

During the last two days, when my mind was upon other things, two very industrious birds had built a nest on one of the support beams above the front porch. I became instantly fascinated by this post-op discovery of a new house being built. I knew that my next step with removing the cancer was going to be removal of my bladder, so maybe I was caught up in some sort of nostalgia or melancholia, or both. But, I decided to run with it. So, the next day I spied this:

The Service Requested is Not Medically Necessary...

Written by Justin Lane
(guest author)

The Affordable Care Act was admittedly, a step forward. Millions of Americans who could not access health care before because of costs and pre-existing conditions are finally able to access the medical services they need. That said, it is far from a perfect system – and is a poor substitute for publicly-funded, guaranteed, no fuss, no-nonsense health care services enjoyed by those living in Canada, the United Kingdom, Germany (which instituted universal health care in 1872), France and virtually every other industrialized nation. Periodically, there are reminders that health care services in the United States are still operated by a corrupt, for-profit system – and too many Americans are still falling through the cracks.

Case in point – Rod H.
An aspiring actor residing in Los Angeles, Rod's income disqualified him from obtaining insurance through California's marketplace. Fortunately, California is one of the states that has adopted the Medicare Expansion, so he was able to obtain coverage through Medi-Cal. Unfortunately, when the rubber hit the road and Rod was in serious need of medical attention, the company he wound up with – a “managed care” network known as “Preferred IPA” – demonstrated that in many ways, the bad old days of bureaucracy, denials and “profits over people,” bottom line corporate mentality are still with us.

Given Drugs and Sent Home
Rod had been with Preferred IPA only a short time when he began experiencing pain and started noticing blood in his urine. While there are multiple reasons as to why this occurs, it's generally a symptom of a serious medical condition – and not one to simply be ignored. Rod went to a nearby emergency room at the beginning of August, 2014. Diagnosis: infection. Treatment: send patient home with antibiotics.

The bleeding and pain continued. Rod's next step was to schedule an appointment with his “Preferred Care Provider” (PCP). Getting into see the doctor took over three weeks. The PCP scheduled an entire battery of tests, including blood, stools and urine. All results came back negative for cancer, the primary concern. Again, Rod was sent home with pills.

Since getting those test results, the bloody urine has become a near daily occurrence – and the pain has not eased. Over the next several months, Rod visited the emergency room numerous times. Each time resulted in the same diagnosis and treatment. In Rod's words: “Hey! You have blood in  your urine! Really? And a very, very minor infection. So, here's  some pills and go the f*** home!” In November, Rod returned to his PCP. The physician wondered if he might have kidney stones – a painful, potentially serious, but easily treated condition caused by excess minerals in the urine. Rod underwent two sonograms in order to discover if this was indeed the case – but the procedures revealed nothing.
It was time to consult a specialist.

The Final Diagnosis
Rod was finally able to see a specialist in January, 2015 – over five months since he had begun experiencing symptoms. The urologist discovered that Rod had a bladder tumor. It was not known if the tumor was malignant or not – but it was urgent to have it removed immediately, if not sooner.
Preferred IPA, with its corporate mentality, has its own idea as to what constitutes “urgent.” Rod would spend the next several weeks in attempts to get his surgery scheduled. This proved to be like the proverbial mating of elephants (done with a great deal of heaving and grunting at a high level, taking two years to obtain results).  By mid-February, Rod's PCP, also frustrated by the delays, advised him to “take the bull by the horns” and apply pressure by calling his urologist daily to find out if his needed surgery had been scheduled.

That was on February 24th. In the meantime, Rod was forced to cut back on auditions and turn down paying work for fear that it would aggravate his condition. Finally, however, Rod received notice on March 12th that his surgery had been approved.  Over the next two weeks, he was sent information on the procedure as well as prescriptions for various medications in preparation for the operation.
On March 24th – nearly eight months since the onset of his symptoms – Rod was scheduled for surgery.

Only in the USA
Only hours before undergoing surgery, Rod was informed that the surgery had been canceled – not by the doctor, not by the hospital, but by Preferred IPA, which had approved the surgery in the first place. The initial reason given was that the insurance company wanted the operation performed by a surgeon that was “in their network.” However, in a letter, Rod was also told that, according to the California Code of Regulations, Title 22 CCR, § 51303, the “service requested is not medically necessary.”

To re-iterate: the man has a painful bladder tumor that may indicate a serious, even life-threatening condition – but according to “regulations,” having it removed is “not medically necessary.”
Rod was referred to another “in-network” for “evaluation and treatment to be done at a LA Care MediCal contracted facility.” On a social media site, Rod posted his feelings about the latest delay, which could have been said by any number of Americans over the past generation and more:
“...a significant delay will be had before any actual surgery takes place. Meanwhile, of course, the tumor continues to grow and I continue to bleed and insurance  companies continue to profit.”

Still Waiting...
As of this writing, Preferred IPA has graciously deigned to allow Rod have (yet another!) consultation with an “approved” urologist on April 30th in order to confirm what the previous specialist has already diagnosed (there's some “free market efficiency” for you!) By then, it will be nine months since the onset of his symptoms – and he will still be waiting for surgery to be approved and scheduled. In the meantime, he has called upon his friends and acquaintances to contact Preferred IPA as well as the surgeon and demand that the date of surgery be moved up. Rod also contacted a lawyer from the Independent Medical Review Board. The conversation was brief – primarily, the lawyer wanted to know if he was “satisfied” with Preferred IPA's decision.

Rod gave the answer one would expect. It's a conversation that would not even be necessary if the U.S. was not controlled by amoral, profiteering corporate vampires determined to literally suck the lifeblood out of the American people – the same corporate tyrants that blocked every attempt to institute true, guaranteed, publicly-funded health care of all.

As Rod continues to suffer pain and bleeding every day, and as this potentially dangerous tumor in his bladder continues to grow while he waits for a procedure deemed “medically unnecessary” in the USA that would have been done for him almost immediately in any other democracy on the planet, his story serves as a reminder that under America's hyper-capitalist, bottom-line society, profits continue to trump concern for human life and well-being. The Affordable Care Act may, as talk show host and author Thom Hartmann says, be the proverbial “camel's nose under the tent” – but there are millions of Americans who may not be able to wait for the rest of the camel.

NOTE
Rod has had a biopsy from his new urologist (results pending) and his tumor, of course, has grown larger since the previous procedure. Surgery is scheduled for later in May.

2ND NOTE
Rod has had surgery (results pending) has been officially diagnosed with cancer.

 

Dear Health Care System

Dear Health Care System,

Well, it's been quite a week, hasn't it? It seems you have reached a point with me wherein you haven't a clue what to do with me anymore. You wanted me there at 9am to withdraw some blood and I was there at 8:58am. At 10:36am, after several people were called ahead of me, I just fucking left.

Of course, once a specialist sees me and renders his/her verdict, then you will have something to sink your teeth into. Until that time, when I visit your crowded ER once again I am sure, you will shake your weary head and shrug your weary shoulders. You will wonder aloud how strange it is that a man should be having such a problem, and whether or not I have an infection to go along with the 1/2 pint or so blood loss per event (which alarms me more than you), you'll give me some antibiotics, pat me on the head and send me home.

I know you desperately want some satisfaction and sometimes you seem a bit hostile that I don't have any kidney, bladder, prostate or even liver maladies. You're left holding an empty bag and the best you can do is wave a scolding finger at me because I smoke (even though that has nothing to do with it). Yet, fear not! Perhaps the bubble on my bladder will burst and you can get all atwitter with excitement treating some good old fashioned peritonitis! The cutting, the sucking, the sewing! You will be very pleased with yourself then and have a feeling of accomplishment.

Signed,
Your Health Care Pal