shockingly terrible awful ovarian news written 5/23

     Everyone who gets cancer thinks they're the only one who experiences what they do in the way that they do. I liken it to pregnancy. Some newly pregnant women are like this too-- acting like they are the first woman to ever be pregnant... The other mothers remember how it feels to be newly pregnant and we let these newbies slide. Similar to getting pregnant most people are surprised on some level to hear about their cancer. How could this alien invade me so surrepticiously? How could I not know? When did it move in?
     I knew. I was waiting. All of my predecessors including my parents,  some gandparents, aunts, uncles, all my siblings  had/have cancer of some sort. I watched carefully. I examined my  Catholic conscience and my physical state every night at bedtime. I did the yearly tests.  I ate well, lived clean and weighed 135 pounds.  I drank moderate glasses of red wine. I worked hard and slept well. No allergies no illnesses no medicines.  I followed the rules. I was part of the Framingham Nurses Study--the healthy unmedicated control. I was part of the Ovarian Cancer Screening program..hah! I should have eaten every fucking steak and chop available. I should have had more sex,  more wine and more onion rings and fried clams.   I should have gotten high more often.  I knew something was wrong in December in Copenhagen. One of my travel mates Rosalind, who is an MD, remembers me complaining of a pulling sensation in my left lower quadrant. I thought we had walked too many miles that day in the cold snowy Danish countryside. It didn't feel bad at all. Not even really a pain, just a 'pull'.  When we came home I made an appointment with my primary for after the new year which was right on time, not overdue.  She drew basic yearly bloodwork which was normal, examined my chest, abdomen, ears, back, neck.  She looked at my ankles. Listened to my heart and lungs. Did an EKG. "Everything looks good".  I made an appointment with a new GYN because my previous one had moved out of state. She came advertised as experienced, a good surgeon and a nice woman. Let me say here when you need a surgeon you DO NOT need a friend. A good bedside manner is a plus but unnecassry in a non primary. You don't need another friend.  You need an expert and big brained experts are mostly quirky--in every field you can name. Rocket science, physics, pharmacology, surgery, genetics, economics, astronomy etc. Really brilliant people are not like the rest of us. They are special. Thank Christ. In a surgeon, you need a  well trained board certified ( and not just board  eligible!--you want him to have passed his boards) technically able, fast handed, confident surgeon.   There are good fast surgeons and bad fast surgeons but there are no slow good surgeons--remember that. In the operating theatre it's important to move along.
   Some needy scared patients/people need a hand holder--that's what your primary is for.  Even tough old me, through this horror, have occasioanlly needed a hand to hold.  Choose hands carefully. Some of the best surgeons I have known have terrible bedside manners.  Complete assholes in fact, but grow up here!!! Who gives a shit about their bedside manner?  If they can operate and recover you the personality is secondary. Surgeons are confident, egomaniacs, they have to be in order to drop that knife onto your skin. If you like your surgeon, even better but that's not necassry if you have a good primary, that's what the primary is for. Like a genral contracter. You need to relate to them. You need to trust all these care givers and not get caught up in 'oh she's so nice'. Yeah but she can't operate her way out of a paper bag and her post-op numbers are not good... I tell people this all the time. If someone in your family needs surgery you pick up the phone call the OR, ask to speak to the charge nurse and ask her this " I'm from out of town my aunt needs an orthopedic surgeon for her hip, can you give me a couple of names as I don't know anyone in your city." I have done this at least 4 times in my role as daughter/nurse and no nurse has ever refused me a few names. Nurses like to help. You get a couple of names from someone who works with the surgeon and has WATCHED them operate.
    It's always a mixed blessing when the doctor thinks you know more than you do because you're a nurse, another doctor or NP.  In my case I am a CRNA so I operate with these surgeons regularly. It is true that surgeons are born, not made. And it's obvious immediately.  I have been practicing anetshesia for 32 years. I can tell now when the surgeon is good or bad pretty quickly and I have to tailor my anesthetic to fit that scenario. We all do this.  There are moments when I know more about something than the doctor and he more than me. I get this, as we all specialize now. BUT WHAT HAPPENED TO THE BASE CORE KNOWLEDGE? How did that get pushed aside?  ( our last med School Dean thought it was more important to "Be Nice" rather  than to be good or how about excellent? His motto was "Be Nice'. I swear to God. They got rid of him. What happened to the differential diagnosis? What happened to examine , listen to the patient, write your H&P, put the puzzle together and go ahead--be brave-- make a diagnosis!! Confirm it with a lab or an xray. They can't do that anymore, They rule out rule out rule out. Wheres the evidence there? They can tell you the 27 things you don't have but they can't pinpoint whats wrong. Costing thousands  of unnecassary  dollars. The algorythm they use from the insurance companies don't allow them to test for things outside the 'critical path' of the non thinking cheat sheet.  It scares me to death and it fact it may kill me to death now. It's certainly bankrupting the system. They waste so much time and money because they aren't trained to think anymore. The quota system precludes a medical school class where everyone can think critically.  Half of these kids need intermittent, some constant, tutoring to get them to graduation. Old joke: "What do you call the guy who graduates at the bottom of his medical school class?---- Dr."    This is a problem that is now societal,  this lack of quality everywhere, and in case you haven't noticed out society is circling the drain here due in no small pat to the failing health care system. One third of the budget goes to Medicare and August 2 is coming all you debt ceiling worrywarts. Another digressive connection. Yet another rant for later. See how the digressions sneak in here.
      So you might think that when I-- this seasoned, cynical experienced anesthetist-- go to my doctors, and they know who I am, and what I do, and for how long,  you would think if I'm telling them; 'Hey something's wrong here.'  they would listen.  It's like big brother has got them and they can't think outside the box, they'r afraid of administration.  Aforementioned they are no longer the smartest ones who applied to medical school that year.  They are a mix of the east coast academic left leaning socialist politically correct affirmative action variety box of chocolates.  Did I miss an appropriate adjective? Please feel free to make suggestions.   You would think if this obnoxious Yankee bitch was standing there insisting that something was wrong and we need some visualization of my pelvis one of them might listen.  But NOOOOO because now we have a generation of doctors under the age of 43 or 44  who can not  think oustide the big brother enterprise box. Are you getting this emphasis? They can only rule out rule out rule out. Evidence based medicine they call it. They had to invent this because they did away with the meritocracy of getting into medical school and the students weren't smart enough anymore.  It used to be simply the smartest, now If you are a non white Jewish/Muslim single mother Lesbian  illegal alien who grew up homeless and majored in womens studies you cover several quotas at once--'let her in'.  The intellectual capacity of medical students has declined. But so has that of college students and half of graduating high school seniors can't really read.  This should scare you. Sorry to offend all my young doctor friends. Keep in mind even Ceasar said 'What is wrong with todays youth?"  Several of you see this every day with your own eyes so spare me the objections. The abolishmnet of the pyramid system for residents has eliminated a way to get rid of the worst intern/resident at the end of each year. Basically they can not fire a bad resident anymore. They just keep moving them along and they finish them and send them out into the world to try to kill people. Working in the operating room for more than 30 years I can tell you I see this every day. No one wants to talk about it, admit it or do anything about it.  It happens outside the OR too. You readers all have a horror story from the hospital. Medicine is an example of a place where quotas should play no role. If you can pass the admissions test/criteria, complete the program and pass your boards, that should be the yardstick. The applicant should be a number, not a name with a sex or a race or religion or a zip code. That is not how it's done and that is a different rant I'll get to later.

    So,  I kept trying to tell my 3 different doctors that something was WRONG! A big red flag was waving and they were all missing it. I had 72 blood tests, all normal. No one drew a CA-125.  So March came and went and my pain got worse. I tried to ignore my inner siren and finally  I asked my  boyfriend to order me a cat scan because no one else would.  I think he expected nothing too. But it was not nothing. I was so angry at first I threatened to shoot my gynecologist. Vapid idiot from Indiana. She felt my small round ovaries and my cute little post menopausal uterus and affirmed my pap smear was squeeky clean and her job was done. The rest of the pelvis is foreign to her and she never felt further. No blood work no ultrasound no fucking nothing. She wanted to give me estrogen. There are several lessons to be learned here through this adventure and I can pick out the high lessons better than most. This will be a recurring theme here and please forgive me if that gets overbearing. Trust your gut. You know what you know. If you know something and you have a gut feeling about that GO WITH IT. It's your body. Drive them crazy, exaggerate the symptoms, get them to DO SOMETHING . The insurance companies want them to do as little as possible. You must know this if you've advanced to reading blogs. You must be well read on some level. One big  lesson in getting good care is go to where the very best are and stick with them. Forget this local boondock shit. Something as simple as an appendectomy can be botched badly. I've seen that too.  Our medical system is failing and you need an experienced advocate the minute you enter the building. If you find good providers and care stay with them. Love them even if they lack  a bedside manner fitting your favorite soap opera.
    I'm only a month post op here today so I will chronicle my surgical adventure in the next blog which will look out of date order because I have to copy it in here from a hand written journal. Maybe I'll figure that out in the meantime. I need a nap now.