First
of all I want to thank all my friends and visitors to the blog for the
thoughts and prayers during this nightmare of a roller coaster ride. It did
make a difference and helped to buoy my spirits knowing I had many folks
around me putting in a good word with the man upstairs. I believe we had most
angles covered, Catholic, Jewish, Mormon, Baptist and probably a few others too. I thank you all from
the bottom of my heart. It might have just made the difference.
Last Friday the 16th marks a year since dad shed his mortal coil.
I wish that so much could have been different. Or relation was never an easy one.
His passing was brutal in so many ways, beginning with the fact that we
were always behind the curve and were never able to get enough morphine in
him to keep him out of pain. He howled for four days straight before he passed. I can't
shed that agonizing image from my brain.
It
has been a stressful time trying to cover dad's in addition to my
regular chores. Seven high-mile family cars and a 1952 Ford tractor to look
after and maintain. Still cleaning up at mom's after last year's big wind
storm. Taking down some of the more exposed trees, cutting six cords of
firewood for her. House repairs, you get the picture.
All of this was
not made any easier when
last July, while doing some deck repairs at mom's,
and responding to the call of nature,
I felt an extremely sharp pain, on the level of fainting pain, that ultimately led to the discovery of a
large bladder stone requiring surgical removal in August.
Just as the
nurse was waking me up from that ordeal, and working to get my pain
under control, and I become aware of the new pipes coming out of my body, the doc comes in to the recovery room and tells me; "looks like you and I will be having a long term relationship". ohh yippee!!!
Apparently
besides revealing the quarter sized stone in my bladder the pre-op CT
scan showed
other "issues" of greater concern. In the midst of the battle between my pain and my drug
induced stupor I lodged that information somewhere in the back of my
brain but did not make much of it right then.
The bill for that medical misadventure you ask? It totaled just short of thirteen thousand dollars. Five grand for forty five minutes use of the operating room. Four grand for an hour in the recovery room. Twenty five hundred in "pharmaceuticals" and the anesthesia man. Another grand in incidentals and supplies. And the four fingered doc gets only about six hundred and eighty for his skilled labor. Go figure! is that the missing pinky discount rate?
The short of it was that at the
postoperative check up a month later the doc tells me, yea we have an issue here, as he shows me the CT scan image showing two centimeter
tall Mt Fuji where none
should be. The doc says we need to do a biopsy cause it
has all the looks of cancer. GULP.... BIG GULP.. ohhh shit!!! Yea , go
see the lady out front to schedule for the TRUS biopsy procedure. WTF? Yea it conjures up images of a medieval torture rack and you're not far off to think that. I walk out of
the place nearly in tears, feeling I have a hand grenade inside me, the
pin has been pulled and it is about to go off any second.
So
for about six weeks we were running scared. Exhausted and terrified really. I don't have time for this. I am to young for this. What if they have to operate and take it out? The level of stress is like none I felt ever before.
As some visitors here know I earned my pilots license a few years ago.
Over the last thirty years I have
had my share of frights, and have had to cope with a couple close call
emergencies. I learned to not loose my cookies under that sort of duress. I
have learned that I am OK so long as I stay in control and fly the
airplane, and have something I can do to influence the outcome.
Keep flying the plane I tell myself. This one however, just like a year earlier with dad's stage four
prostate
cancer, I am helpless and can do nothing to fix. And that is the most
dreadful feeling of it all. It's not like I can go down to NAPA, buy the
part and do the job in the garage like I am used to.
One
of the benefits of doing physical work for a living is that at the end
of the day I am dead tired and when I lay my head down on the pillow I am out like a light. I normally don't
dream and am a sound sleeper. Now suddenly I start having the same
reoccurring nightmare all in darkest shades of blue. I am in a strange
dark and dirty abandoned house, dead tired and need to sleep. I find a
bed, but as soon as I lay down it comes alive and starts eating me. I
scream in my sleep and Annie wakes me covered in sweat.
Up to a couple years ago I never had any medical issues of any concern....
...
other than those self induced by my reckless invincible youth on assorted wheeled
and motorized vehicles.
Just past the mid century mark now . . .
. . . the picture suddenly does not look so good anymore.
Now, I have butchered a deer or two along the way, and consequently I have some idea of what a
mammalian body arrangement looks like on the inside.Yet, despite being married to a physical therapist who's employer
provides us with the best available medical insurance in the state, I know nothing about this
medical ailment other than it is the same cruel poison that killed dad. So I try to educate myself on the subject. The
internet only provides one horror story after another about the
procedures involved in obtaining biopsy samples of the offending tissue.
No telling what happens if it is actually cancer and the end result after they
cut you open and yank it out. I try hard not to go there despite
it being the glaring likely end result of this dreadful adventure. Can you say Depends adult undergarments? And you can forget about the squirrel ever jumping again.
Yea the TRUS biopsy thing? Think
demented medieval blood letting and torture. Fifteen needles about the
size of a sixteen penny nail where the sun don't shine. We request a second meeting with the doc and then the PCP to answer questions and calm frayed nerves, only to leave with more doubts. Do you put me
out for this thing? I ask the doc . . . Nope, he says, we just inject
Lidocaine, it burns a little, Oh it's nothing, he says, it will feel
like a small rubber band snapping, he said. Yea right!!!. You are doing
what to where? NO NO NO NO.... the F--- you are doing that to me.
Oh
yes, there are other much less invasive, no blood, no needles, no pain,
no risk of antibiotic resistant sepsis, more costly methods involving a
high resolution imaging. Something called a Three Tesla MRI that can look at the area of concern on
a cellular level and map it all and identify individual cancer cells.
Its' available for this ailment as a first course of action in some of the greater metro areas of this country like
Boston just two hundred miles to the south of us. But we live in
the Peoples Republik of Maine (think Kalifornia light), where the total
population of the state is just over a million. The insurance
number crunchers know the exact figures and cost involved in providing their slice of the
local population with diagnostic and treatment services for this and
every other ailment. So the insurance fat cats hash it out with the
hospital fat cats on what diagnostic and treatment protocols will be covered and which won't, so that everyone's books can stay in the black, and
all the paper pushing hacks can keep up their payments on their new luxury SUVs.
Less than six years ago it used to be that we had independent,
stand alone, healthcare providers that could make a reference to any
specialist they and their patient agreed upon. But since the day that Nancy Pelosy told us that we "need to pass it to find out
whats in it", and they shoved this pig-in-a-poke Affordable-Care-Act down out
throats, all
providers are forced to be affiliated with a major hospital.
There are only three major hospitals in the state, and they all now operate under
the umbrella of Maine Medical Partners (MMP).
So medieval blood letting and torture is what we get here as a first
line of attack, and you the patient has to subjugate yourself and accept that you are not the
customer, you are the product being commercialized.
I'll
pay for an MRI out of pocket, I said. . . . Nope. . . it's not her fault, the nice girl
behind the counter don't have a box to enter that in the computer to make
the request. The PCP don't know about the Three Tesla MRI diagnostic program at Brigham
and Women's cause the whole system he is forced to operate under since
the implementation of the ACA discourages it, and it is not available for him to make the referral anyhow. And if you simply walk into B and Ws in Boston and ask to
see a doc about the issue, they ask to see your insurance card and then
tell you to go back to your PCP back home. So much for "if you like your doctor you can keep your doctor".
I
was an emotional wreck for weeks. Walked into my barber for a hair cut
in the middle of this sadistic roller coaster ride, and Joe asks me how I
am doing. I nearly start bawling right there. My nerves are shot.
After much fretting it was clear that if we were are to get to the
bottom of what the hell was going on with me, I have no other choice
than to submit to the medieval torture and blood letting. The day of the
procedure, ominously enough Halloween, I felt I was walking into my
own execution. Fucking dreadful! All of us in the waiting room had the
same dreadful stare all over our faces. I was clearly the youngest there,
not a good sign. After more preparatory humiliation and pain. Strangers fiddling with your privates and inserting tubes where none belong, you are
taken in to a dim lit operating room, and spot the freak tool they are
about to use on you. The thing is about a foot long. Think a dildo with a
handle like a caulking gun on one end connected to a computerized control console.
The doc walks in and I tell him that I sure would love to trade places
with him right about now. He just shakes his head and gives me this "it
sucks to be you" look. The nurse lubes you up and in it goes. Oh
joy!!!! The lidocaine the inject in you? yea it burns... like a fricking blowtorch on your innards. That's when you start squirming from the pain.
"Get ready, here it comes", he says. Craaaack, It sounds like a fricking pop stapler every time the four fingered sadist at
the other end squeezes the trigger.
Rubber bands my ass!!! it was more akin to having an electric cattle
prod shoved inside you and
triggered sending 200 volts through your innards while you hold on to
your willie, scream, cry and whimper like a little girl every time the thing snaps. Fifteen times in a row! "
you are doing great", they reassure you amid your sobs and tears. I can assure you that when
I cut my finger in the chop saw a couple years ago it did not hurt as much as this. But Hey, they even give you a diaper before you leave. Get used to the idea. It a sign of things to come. A week of blood,
discomfort and anguish ensues till we hear back about the results. I am
terrified to pick up the phone every time it rings, and as it was the
week before the mid term elections the spam calling is fast and furious.
This shit is nerve rattling.
When
we finally get the call a week after the biopsy, the doc tells me the lab work found NO cancer in any of the samples he took. Annie and I both
break down in tears right there. The stress has been brutal . . . I don't know what
to say . . . I gather my emotions and ask him, so where do we go from here? The doc says well, he figures the
biopsy is only about eighty percent accurate because in about fifteen to twenty percent of the
cases when he goes back with an MRI he still finds something. And now we learn the
insurance does pay for the high-res MRI but only after you do the
bloodletting and torture as a first line of attack. So while the news
for now is good, and our level of stress is down by a corresponding
measure, we are not 100 % out of the woods just yet. We are on what they call an
"active surveillance" program. In six months time we go back and do and MRI
and hopefully there will be no more needles and bloodletting involved.
It has been a couple weeks since we received the good news. It has taken me that long to decompress from the built up stress enough to gather my thoughts in writing.
12/6/18 - Postscript:
I am just going to park this one here. It might be helpful to anyone who finds himself in the same boat and stumbles upon this page.
A really good article on the different diagnostic options:
http://paact.help/adding-multiparametric-mri-to-prostate-cancer-screening-will-save-lives-and-money/
