Et Tu, Cancer? Part 6 - Post-Op Ponderings

Sometimes slowly, sometimes rapidly, since I've been back home from the hospital, ponderings have been crossing my mind. At times they seem lucid, other times they seem rather random. This is a random thoughts blog after all.

This human activity, sleep. I find it embracing and elusive. Although not at the same time. Or so it seems.

It was so much easier to eat at the hospital! They would bring me food three times a day. Even if I didn't eat everything, it showed up. I find at home, even though I have a very good appetite, the idea of making a meal can be very unappealing. Maybe I should take a little stroll through the yard.

Drugs, drugs, drugs. Maybe it's the drugs talking. Maybe it's the drugs writing. Maybe it's just the way it is. Maybe I'm going on about the painkillers.

Abra the cat is a very nice fur ball.

I don't have to try too hard to remember that, although they may be few, the people who have stepped up to help me out have really made a huge difference in my new post-op job: concentrating on healing. Who knew how big a deal changing the cat litter box could be for me? Yes, Abra is a very nice fur ball, but still has not figured out how to change her own toilet!

When was the last time I weighed 150 pounds???

Who knew walking 600 feet would be a big accomplishment? I use to walk 1 to 3 miles a day pre-surgery.

The few good roommates have been more good since I've been back. Meanwhile, of course, the many bad roommates continue to be fucking moronic self-centered idiots.

Ditto.

My scar IS pretty gnarly, dude.

ICU was a terrible experience. ICU should stand for: Insensitive Care Unit.

I knew there were some people who just don't "get it" before my surgery, imagine how I think about that afterward. Wise people don't attempt to compare what I have been going through with their hangnails. Unwise people do. Sorry your car broke down, but I'm still confused how that's an issue bigger than how shitty I feel today - you know, that big scar meant organs were removed and moved about and such. Parts of my body are still numb. Much like parts of your brains apparently.

For future reference: morphine is very, very bad for me. It also doesn't kill the pain.

Who is that tapping at my chamber door?

I have a craving for biscuits and gravy! Ohhh, and there it goes!

Be good to one another.



 

Et Tu, Cancer? Part 5 - The Last Thing I Remember The Clock Read 4:50am; The Next, I Wake Up Screaming!

Finally, the day of my major surgery had arrived. On July 15th, I caught a cab to the hospital, as there were no buses running at that hour of the morning. It was a very nice summer morning in the San Fernando Valley. Major surgery. Indeed! I was about to under go a Radical Cystectomy with an Orthotopic Neobladder. Read about the surgery if you want and please note the irony of 'orthotopic' (my production company is called Orthicon Ghost Productions). There were no McDreamys or Clooneys scurrying about the bowels (more irony!) of the hospital where the surgeries are performed. There's gross simplification passed off as fiction and then there is rampant failure as writers, but hey, that's for another bloody blog post. Keeeeee-ripes!

Even for surgery, part of my actor training was still used whether as a defense mechanism or just pure instinct. Fear. Come on - a dash o' fear. My call time/check-in time was 5:30am, I showed up at the hospital at 5:10am! Technically, it was same day surgery: to begin at 7:30am and end at 4:30pm. I had some trepidations, sure. I mean after all, my first surgery was canceled within hours of it's scheduled beginning and look at the freaking mess I was in now! Thank you freaking mess! This time, there was no last minute cancellation, this bad boy was going down. "You're going down bad boy!"

(Blood leaking out of one of the many holes poked into my hands and arms over the course of my hospital stay. See also, "Et Tu, Cancer, Part 3")

I had some ideas of what life would be like after cancer and with a neo-bladder. Reality versus "what may be' is often what the middle ground turns out to be. Or not to be (hey, sorry, couldn't resist). That's why these blogs are not primarily fashioned in a linear narrative. But, there was no doubt I would be spending at least two weeks in the hospital.

Like the previous surgery that wasn't entirely successful, I went through the preparation period, confident that this time this surgery would be entirely successful. Think about that for a moment, please. All the mental gymnastics I went through regarding what could happen during that first surgery, all the ducks that had to be placed in a row before even daring to attempt to sleep a fitful few hours before getting up for the surgery AND then...the call, the call I was lucky to get from the hospital, "did you know your surgery had been canceled?" --- "canceled!?!" --- so, here I was again, for this major surgery, this time, because all shit rolls downhill, right?

Et Tu, Cancer? Part 4 - Holy Sterilization, Batman!

I couldn't have said it any better, old chum.


Getting the news I had bladder cancer after months of blood in my urine was a bit of a shock to say the least! Then there was the first surgery and that didn't go as planned because the doctor couldn't remove all the tumor for fear of bladder perforation. Finally, the more grim news, well, that's what they call it in all those dramatic pronouncements of cancer, "more grim news". Well, I didn't think it was all grim. I know grim. Grim and I are old companions. The doctor told me it was an aggressive cancer that was untreatable with chemo and/or radiation.

"What's the next step then, doctor?", I sheepishly asked. The answer was surgery, and lots of it. That is the only way to remove the cancer and it was a good thing it had not metastasized. The nine hour surgery is the removal of the bladder, the prostate and the lymph nodes along the hips. Then, taking out 2 feet of intestine to create a "new" bladder. I was a good candidate for that last option. OK, no bladder, new bladder. That would seem to take a lot of getting used to, but what the hell? There's a lot of lymph nodes in the body, so what's the big deal? But, the prostate? What did I know about the prostate?

Not much, outside of all those commercials about a growing prostate and not being able to piss and so forth. The only thought I gave it was along the lines of "poor design". I know about many things: history, economics, politics and I certainly believe in myself as an actor and writer. So, I decided to look up what it is exactly that the prostate does when it's not growing to the size of a watermelon and cutting off one's urine flow. I read and hence the title of this article!

What an amazing thing, this prostate. It creates seminal fluid and without it, of course, no more ejaculations. In effect, I'll be sterile. I can still have kids, mind you, the testicles still produce sperm and from there it's a hop, skip and jump into a nearby artificially...well, you know. I had to take some time to absorb (as it were) the news and to really think about how I feel and think of myself as a man. Which head did I think with and which was more important to my self worth, and in the land of post-surgery how would my self-esteem and body image be worked into all that?

Like any man, I do think with both heads, but a majority of time I'm using the one that houses my brain. My brain, my intellect, my ability to write, act, et al, my friends, is what makes up the most of me. Ejaculation can be a big deal (pun intended?) but without a prostate it does not mean orgasms will not happen (given healing time). Man, what a selling point at the bar when picking up some babe! "No cum, baby! No more spitting out! No more gagging!" Well, there goes the other head talking, trying to convince the brain it won't be such a big deal. I think my self-esteem will survive just fine. The 8 inch scar leading downward from my belly button won't lead to a negative body image in the long run. It's something to show off. "Look, I survived this whole ordeal!", and I'm telling you that you can, too. Stay focused. Stay positive.
 

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.