Tuesday, November 20, 2018

Milestones, Bladder Stones and a Hail Mary Pass.


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/

22 comments:

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    1. You are a good man Gorges and we both thank you. It was comforting to know you were standing beside me.

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  2. Great news. Now it is just a great story to gross out new friends with.

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    1. Yes, beyond keeping a journal for my own benefit and future reference, in a way I was hoping to provide a different account from most I came across when researching the subject. One that perhaps ends in a bit of hope for others facing the same frightening news. One of the things I was disappointed in was how they trivialized the procedure and made it sound like no big deal. I would much rather they had told me this crap is going to really hurt. But you will get through it. As to the aspect of faith, I need to work on that more. I need to find a better way to cope with this sort of adversity as there are surely more to come in the future.

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    2. I did find that most accounts on the internet are either presented as miracles or absolute horrorshows so I did like your account and also learned about different types of MRI which I did not know about.

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    3. Hi Richard:
      The Three Tesla MRI is the most advanced of the new science being used for cancer detection. It is great in that there are no needles, no blood, no risk of antibiotic sepsis, and best of all much less stress on the patient. It not only consists of the equipment used, but the whole program that surrounds it. All of it represents a multi million dollar investment for the provider. Apparently the equipment is available here in Maine, literally a few hundred yards from my house. I could walk to it in five minutes. Just got a call a half hour ago to schedule for an MRI for April. But I do not know that the whole program of the multiple computerized image overlay, along with the qualified program to interpret it is available here at MMP, or if it is of the same breadth and quality as that available at Brigham and Women's in Boston. Getting the healthcare system to adopt new science is like making a sharp turn with an aircraft carrier. It does not happen easily. Basically if we live long enough we will have issues with that confounded organ. So we will all face the nightmare at some point if we live long enough. On the other hand some great advances in the science and treatment of it all are being made with more coming down the pike as we speak. Specifically the individual targeted ablation of cancer cells in order to preserve the organ as much a possible. The key to it all is early detection. And of course a much stronger faith than I had throughout the ordeal. If there is one thing that came from it all, it is that I definitely need to work on the faith aspect of things. There surely will be more challenges to come in the future. For some it comes in the form of classic religion. I know for me that is not likely to work so much, as I don't have that foundation. I don't reject classic religious belief itself, and do in fact welcome it, but I struggle with simply accepting the whole story in anything other than some sort of allegorical writing, which by it self is good value. But it is clear to me now that faith in its spiritual sense I definitely need to work on if I am to get stronger in coping with this sort of adversity in which I don't have any control or influence.

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    4. that second line was meant to read; "antibiotic resistant sepsis"

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  3. I feel for you man. It's tough being caught in the medical system. We have the worse of the free market and the worse of socialized medicine. At least the prayers seem to be working. It's good to have something spiritual to fall back on in times of need.

    Billing departments don't know what to do with me. Today I just figured out I'm actually worse off than I was back in July when I first starting seeing doctors. Any more "progress" and they'll kill me. However, I've hopes for the current treatment. It's a stepped up version of what worked for me two years ago. Also, this has been a real wake up call as far as diet goes.

    My dad passed a couple years ago from bladder cancer. Meds never got ahead of the pain. I spent the last couple months living with him as he was dying. Dad and I were always close, so I was blessed there. I'm glad I was there for him, but I would not want my own kids to suffer though what I did with dad. I told them to put me into hospice.



    A good friend of mine was diagnosed with a very aggressive form of prostate cancer. He was strapped to bed, flipped upside down and they operated with robots. He had an amazingly good outcome. Avoided all the horrible things that can go wrong. Sometimes they do get this stuff right.

    Hope things continue to look up for you. Who's got time for this crap? There's stuff to do.

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    1. Like I said to Richard above, I need to work on the faith aspect of dealing with adversity. If nothing else perhaps it will give me the serenity to cope with the helpless feeling and see my way clearly through the challenge. And that beyond the bewildering invasiveness and pain is the predominant element in this and most medical interventions. The helpless feeling that comes from learning that there is nothing that you personally can do to influence the outcome of the situation. It is definitely not made any better by the limitations imposed upon us as patients by the hacks in the entire system that decide what you are to have or not for a treatment. So, in your case, if cutting salt out of your diet is one thing that will help then do it. It is most certainly not easy. I am a salt fiend. Sweets? not really. Salt I crave it. But if that is the one string you can pluck then pluck away cause that's the one thing you have the power to influence.

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    2. Good thing I'm a decent cook. A lot of low salt versions of foods are bad enough that I just cook something else instead.

      When stuck in the medical system it helps to be a "bad" patient. Ask too many questions. Take up too much of the doctor's time. Do a lot of research. I find it helps to fine something to do, even if it's prayer or meditation. One of the things I keep telling myself: I'm looking forward to looking back on this.

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    3. I have pretty much resigned myself to the fact that I will be on the "active surveillance" protocol for the condition for the rest of my life. Even if everything turns up clean with the MRI in six months time. I figure I am lucky if that is all that comes from this given the circumstances. I don't want to go the way dad did. It is difficult to go against the flow especially when you don't know all the options and the machine just wants to push you in one direction. You walk a narrow edge between frustration and gratefulness. One more factor to fray your emotions. But sometimes you need to "game" the system to make things go in the direction you need it to go. A friend of mine prompted by my experience got himself checked, they found "issues" and is now going through the same nightmare scenario. Doing what I can to help him through it all.
      On the diet side of things the other salt-less flavoring I discovered recently is Garam Massala. A mild Indian spice with no salt. I use it on cubed chicken thighs. Stir fry, serve on flour tortillas with lettuce or cabbage, poppy seed salad dressing, pickled onions and avocado. Awesome healthy. Need to do a post on it some time.

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  4. husband had it i know you are young but GET RID OF IT do not have the robot surgery with the 4 little holes have regular- cut- you -open surgery and get rid of it now it will never do you any favors better alive than dead and sexy

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    1. Hi Deb. For now we are not quite ready to go there and so long as there is no cancer there is no need to. But when we get to that point we will be exploring all the options. Hopefully we can buy ourselves a few years with the active surveillance and there are new procedures being developed currently. Specifically the 3T MRI imaging paired with targeted individual cell ablation.

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  5. also avoid dairy foods and 'white' foods such as pasta and bread hard to do eat many veggies, raw if possible really try to cut back or cut out dairy and pasta type foods

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    1. Dairy I don't do as I am lactose intolerant. Bread and pasta yes much harder to do. They also say red meat is one to cut out. Much harder to do as well.

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  6. Thanks for your insight.
    I am in my mid 70's and I know for certain that I will not go to any exploratory procedure.
    Thanks for the reminder.

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    1. Hi Don, fortunately you are of an advanced enough age, and I am told that in 90% of the cases prostate cancer is of the slow advancing variety, on the ten to fifteen year scale, so that usually something else gets you before this progresses enough to go to the full blown metastasis stage as it did with dad. He simply neglected to get himself checked for something like twelve years until he started hurting more than normal. His own stubborn fault. He was 83 when diagnosed and had a a PSA of 650. Normal for most of us should be nothing over 4. So some run a bit high and it means nothing. Some also have no rise in PSA and have cancer. By they time they diagnosed dad the cancer had spread though out the body and nothing but palliative treatment could be offered to slow the progress of the disease. That in itself is brutal. Prostate cancer growth is stimulated by testosterone so the usual course of action at that point is to eliminate all of it possible. Put simply chemical castration. And all the drugs for that are exorbitantly expensive on the rate of five to six thousand dollars per month and have a very brief span of effectiveness on the order of less than six months. So then they put you on to the next more aggressive and poisonous one. It is a brutal treatment to undergo. Think menopause to the power of 1000. Debilitating. Quality of life is shit. And the end is down right cruel. The treatment bought dad an extra year and a half. In that sense, as Deb above says, if it comes to yanking it, do so, but is does not come without some serious compromises. That little walnut performs many duties, it is a gland, a muscle, a valve, part of the central nervous system. The hormones it produces regulate your personalty and mood. Way too much going on with it. As much pleasure (ecstasy?) as it can provide it also can provide an equal if not greater measure of pain. Fortunately new developments are coming down the pike. If you are ever diagnosed with a bump or rising PSA insist on the 3-T MRI as an initial protocol for diagnosis. Do not take no for an answer. The human pincushion experience is terrifying.

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  7. Good to hear that so far so good. Prayers for the six month checkup!!

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    1. Hi Matt, thanks for the prayers, I truly appreciate it. Knowing I had folks bucking for me helped to keep me going during the most stressful part of this frightening ride.

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  8. Holy Mackeral - that IS a roller coaster! Hope the ride is over, M!

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    1. Hey Glen, yea it was a wretched roller-coaster. I hope it is over as well. We still have to do the MRI in April thankfully that is nowhere near as invasive. The doc did say that in about 15% of the cases he still finds something at that point as the shiskebob treatment is only at best a glorified 80% accurate Easter egg hunt. So though the stress is greatly reduced the demonic ride might not quite be over yet.

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  9. A really good article on the different diagnostic options available:
    http://paact.help/adding-multiparametric-mri-to-prostate-cancer-screening-will-save-lives-and-money/

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