NomDebPlume's 2½ Cents

Because I have an opinion about everything…

Archive for the category “Healthcare”

Just a little Cancer

Barshinger Cancer Institute

It’s my quarterly visit to my hematologist/oncologist to review my blood test results.  We’ve been doing this for a couple of years now and I know what we’re looking at and looking for in my tests (printed and in my purse, with notes), so I have the confidence of a patient just going through the motions, the very definition of “chronic illness”.

Though I hate to admit it, this day, I’m more concerned with how my hair looks due to the rain and just how fat the scale is going to say I am this time.  My husband drops me off and goes to park the car.  While I’m waiting out in front, I see a woman who is so, SO skinny.  She’s walking to her car and I only see her from the side, then the back.  Her legs are like spindles and a small child could pass through her “thigh gap” (of which I have none).  Wow, I’m not feeling jealous, for a change.  And the words, “there really is a too skinny” float across my brain with no place to reside because I’ve always considered them an oxymoron when used together, so I just focus on something else.

Like a dog who suddenly sees a…. SQUIRREL!  I’m now thinking, “This place is beautiful”.  So when I’m pretty sure no one is looking, I snap a few pictures with my phone, right before my husband returns.

Walking through the front doors, we are instantly greeted with wide, airy, open spaces, then an information area made with colors that can best be described as ‘happy’, and greenery.  Lots of greenery.  Life.  Straight ahead, the plants line a giant wall all the way up to the skylights and all the way through the sectioned waiting areas.  It’s like this place that should be scary because it says “Cancer” right on the building, yet it also screams PEACE at you, so you feel peaceful.

The only thing that was bothering me, was my hair.  I’ve always had long hair, but at 54, the texture has changed from coarse, frizzy, wavy hair that I straighten, then force into a manageable wave – to flat, straight hair that is not at all interested in holding onto a wave.  And it’s entirely too long for someone my age, almost reaching my bra along my back.  And the grey… yikes!  I decided to stop coloring it and let the grey grow in.  It’s kinda like an ombre, but not —
And then I see it – I see her: a woman without hair.  Oh, gosh… she must have actual cancer and lost her hair from the chemo.  Poor thing.  I immediately decide I am a self-centered, ignorant, vain monster.  And then I see a second woman without hair, but she’s wearing a scarf.  I’m not even going to touch my hair.  I feel horrible and guilty that I even have any at this moment.  But then they call my name and the moment passes.  I move on, hopefully away from women without hair.

Truth be told, there is something else that’s bothering me.  My husband always comes into the exam rooms with me, but my last visit to this doctor – the hematologist/ONCOLOGIST, he asked if he could just stay in the waiting room.  Sure.  Whatever.  NOT whatever – it really bothered me.  Even so, before the nurse comes out, I whisper to him: “You don’t have to come in with me if you don’t want to”.  He doesn’t want to.

Oh, great.  I’m being directed to the ‘weigh station’.  It’s a little cubicle where nearly the whole floor is a scale, so it’s hard not to feel like I’m an elephant or hippo.  Upon further reflection, though (after 2 years), I realize it’s probably to accommodate people in wheelchairs.  Still, it doesn’t make the number I see displayed any easier to look at – even if it IS in kilos.  Hello?  This is the U.S… the only country that doesn’t participate in the metric system and is proud of it!  I know the exchange rate (whatever) is 2.2 pounds per kilo, but at the moment, I’m choosing only to think of the number 99.  And hey, my blood pressure is normal, not high.  (Despite the trauma of being weighed first.)  Focus on the positive!

Sitting in the exam room with the windows near the ceiling, it’s difficult to keep my mind from getting pulled up into the sky where the sun is peaking out through grey clouds every now and then, but I answer all the questions about my myriad of medications and then a new question: “Are you feeling stressed?”  Well, that came out of left field.  I explain to the nurse that I’m a little on the ‘high strung’ side, so I’m always feeling stressed, but now she wants a number “…on a scale from 0 to 10, where 0 is blah, blah, blah”.  I’ve been using that scale for years, but usually to measure pain.  Stress?  Oh, heck.. I don’t know, I think I always hover around a 3, but it’s more like a 5-6 right now.  “And what is your main stressor today?”  [Enough with the questions, lady!]  And then I just blurted it out: my husband.  I felt like I’d just betrayed him somehow.  I mean, I’m in an oncologist’s office and my biggest stressor is my husband?

She leaves me alone with my guilt while I wait for the doctor.  The ‘skinny’ thing, the ‘hair’ thing, and now this.  Yes, I AM a monster.

Dr. R. comes in.  After the initial pleasantries, I whip out my papers with numbers, facts and questions.  He is happy that my White Blood Cells haven’t gone up much and my Red Blood Cells haven’t gone down much in the last 3 months.  I had noticed that the 3 tests that should read zero (but haven’t for 2 years) have gone up and are more abnormal, yet still only have the A for Abnormal as an indicator.  And THIS is why patients have to look things up on the web.

I start asking Dr. R. about my new symptoms and if they are related.  He tells me he doesn’t know.  I ask him several other questions about this ‘condition’ with the long name: Myelodysplastic/Myeloproliferative Neoplasms – Unclassified.  After several “I don’t knows”, he suggests that I go back to Johns Hopkins and see the oncologist there on a more consistent basis because he feels like he’s doing me a disservice because of his inexperience with this rare disease.

Yeah, I’ve got all kinds of red flags going up in my brain.  “Rare disease”?  “Johns Hopkins”?  What IS wrong with me?  Months ago, I had a bone marrow aspiration to find out if I have Leukemia and I don’t.  He said it was like a pre-Leukemia, but if it morphed, it would be to a very treatable kind of Leukemia.  The last two visits with him and the one at Johns Hopkins for a second opinion all gave me the same cold oatmeal generic feeling: It’s SOMETHING, but not something to be worried about.  Now I’m wondering, Are we not worrying because we don’t know what we’re doing?

So I move along to my last question: I read that Myelodysplastic/Myeloproliferative Neoplasms is cancer, do I have cancer?  “Yes”, he says, as matter-of-factly as if he were telling me about the rain outside, “A neoplasm IS cancer, so let’s just start calling it cancer from now on.”

Yes, let’s.

I’m kind of annoyed.  No, not annoyed – more like shocked.  But in a calm voice I ask, Why hasn’t anyone used the word ‘cancer’ until now?  “This is why you should be going to Johns Hopkins”, he tells me.  Yes, I probably should.

“How’d it go?” my husband asks.  Oh, you know… the numbers were still in the safe range, nothing to worry about.  But Dr. R. wants me to start going to Johns Hopkins for at least 2 of my 4 quarterly visits.  He said he’s doing me a disservice, he’s only seen 2 or 3 people over the span of his career who have this and Johns Hopkins has exposure to more patients, so they’ll be more helpful.  “Okay,” he says.  Then I tell him how Dr. R. told me “neoplasm” means “cancer”, thinking this is not news he is going to want to hear, but he says,  “Yeah, I remember him calling it cancer before.”

What??  I don’t remember this at all.  I know I have memory problems, but how could I forget something like this??  I’ve never even looked up anything about cancer on the web, nothing but “Leukemia” has ever been a concern for me.  This is mind-boggling, and a little Twilight zone-ish, but I react with my usual contrived easy-going Oh, really? attitude that makes my husband feel more comfortable with my diseases, especially this one.

Once home, I look up the words “neoplasm” and “cancer” to check if they are related the way Dr. R. says they are.  They are… in the technical sense he mentioned.
Neoplasm means “new and abnormal growth of cells, especially as a characteristic of cancer”.
Cancer is defined as: “Abnormal cells that tend to PROLIFERATE in a part of the body”.

Tomato, Tomahto.
Cancer.
But only a little cancer.

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‘Tweaking’ our Healthcare System

 

I don’t know anything about cars, just like I am not well-versed in the intricacies of healthcare.  But… you drive, you learn.  You get sick, you learn.  You live, you learn.  You pick up little ideas here and there to save money while also keeping your engine, or your body, running optimally. 
 
It certainly wouldn’t make sense to replace my entire car if I just needed new spark plugs and an oil change, so why is the current administration proposing we start from scratch with our healthcare system?  Really, that’s more of a rhetorical question, since I think we got exactly what all the liberals, democrats and Hollywood air-heads voted for: incompetence.  But hey… what about the people who knew all along that this guy was in way over his head?  How about we only force Congress, Mr. Obama and everyone who voted for him to participate in government-run healthcare?

Those would be in my ‘Fantasy Tweaks’ category, but I can think of two realistic changes right off the top of my head.

 
What about this…
– Prohibit pharmaceutical companies from advertising to the general public. 
Think about it: how much sense does it make to advertise something that cannot be purchased without a doctor’s prescription?  Aside from raking in big profits (which are incorporated into the high prices we pay for medication), what are these companies really doing?  Are they suggesting that our doctors are too stupid to recommend the appropriate medication for us without us first approaching them with a tale of some commercial we saw that convinced us that we need it?  So, in effect, we have prescribed it for ourselves and the doctor is now an afterthought… a mere signature provider.  I’m glad I didn’t go to school for 8-10-12 years so my patients can just tell me what they need (after being educated by a 60-second television commercial).
 
And who pays all those nicely dressed sales reps I’m always seeing in my doctor’s office?  You know the ones: they leave all those samples and post-it pads, pens and stuffed toys with their logos smartly displayed?  Perhaps the same people who pay for those pharmaceutical company-sponsored, all-expenses-paid trips to luxury resorts for doctors.  That would be YOU.  And ME.  We all pay for it with every inflated price of every single pill we swallow… or medication we can’t afford.
 
Here’s my next idea:
Stop using the “Price Squared” system for medical equipment and supplies.  People who don’t need these items usually have no idea how much putting the word “medical” in front of a product raises its price.  When I cared for my mother-in-law after her stroke, I was introduced to a world I never knew existed: the world of over-charging for medical equipment and supplies – or in the patient’s case, over-PAYING. 
 
I remember when I wanted to purchase a cushion for my mother-in-law’s wheelchair.  I went to the Medical Supply Store and was charged more than $50.00 for a square piece of foam rubber covered with a cheap, thin cotton pillowcase.  If I could sew, I could have made one of these for about $7.00, but since this was a special cushion, made specifically for a wheelchair and had to be bought at a special store, it cost WAY too much.
 
Why are medications and necessary supplies more costly in the hospital?  Different people have different theories about this, but I think we can all agree that it’s out of control.  And why can’t I just take my own medication when I’m in the hospital?  You know, the stuff that’s already paid for at a rate I can afford AND understand.  I take my meds properly at home, but the hospital doesn’t “trust me” to do it correctly while there, so that charge gets added to my bill in some indecipherable terminology. 
 
See?  “Tweaks”.  I’m sure there are more, but these two could probably keep people busy for a while.  Imagine the savings!  Appreciate the logic!  Or overhaul the entire system, continue to ignore common sense and let our older, disabled and chronically ill citizens die while they wait for adequate care they may never receive in a new, government-run program. 
 
In a nutshell, have you noticed how well the out-of-touch, self-important politicians handle everything else they get their greedy hands on?
Exactly. 

What’s Bugging Me About American Healthcare Today…

Maybe I’m just in a cranky mood because I’m sick today and feel like picking on things, but there may actually be some truth to the claims I am about to make.  As always, it is for you to decide.

Two nights ago, my 5-year-old daughter began to run a fever out of nowhere.  One minute, she’s jumping around on a trampoline at a place called Tumbletown with boundless energy, and by the time she gets home, she’s got the chills and is feverish.  Apparently, the stuffy nose she’d had for several days was not due to allergies, but was actually a warning of something a little more sinister brewing.  So I give her some fever-reducing medicine and dress her warmly for bed, thinking (hoping) she will feel better by morning.  But, no.

A few hours later, I am greeted by an upset little girl who has just vomited all over her bed and herself.  She is feeling much worse and when I read the thermometer, I am alarmed.  Giving her more anti-fever medication only makes the vomiting start again, so I am at a loss as to what to do.  A call to the doctor sends us to the emergency room.

Despite the fact that the emergency room is empty, we are forced to wait.  I fill out a bunch of forms, and we wait some more.  I stand in front of the empty registration desk so someone way in the back might see me, and wait even longer.  Finally, we are taken back and the process begins.  A nurse takes vital signs at the registration desk, along with asking me for all the information I just filled out on the forms.  It’s after 1am and my daughter is crying and uncomfortable. 

When finished with this step, we are taken to a small room in the back and wait some more until another nurse comes in and asks what has brought us to the emergency room (for the third time).  I again explain the details of what my daughter has experienced and how we are there because our family doctor told us to come, and then she leaves.  And we wait some more.  She returns, finally, with a doctor and says, “Can you tell the doctor why you brought your daughter here tonight?”  I could hardly believe it!

The doctor examines my daughter and tells the nurse to give her a medication to combat the nausea.  During the examination, my daughter winces when her ear is touched and I comment that she made no mention of her ear hurting at home.  This is the only thing said by anyone about my daughter’s ear.

Over an hour later, the doctor comes back and says she will be prescribing an antibiotic before we leave.  Her father and I ask her what it will be for, what’s wrong with her?  “For her ear infection, of course.”  We look at each other in disbelief and nearly in unison say to the doctor, “You never told us she had an ear infection,” at which point, a polite disagreement ensues.  Ultimately, the doctor admitted she didn’t actually say it, she thought I already knew because of my comment. 

Puh-leeze… I’m lucky I understood any of her comments!  I’m sure her credentials are fine, or else she would not be allowed to practice in my local hospital with a fine reputation, and she was very pleasant to my daughter, but both her father and I had to struggle to understand her version of English.  We’re talking health issues here, I’d like to be able to understand the instructions she was giving me regarding the two different medications she prescribed and the timing, dosing, etc.  And knowing she had another ear infection was important because of my daughter’s history with ear infections and the possibility that she may have to have her adenoids removed if they continue.  No, she couldn’t have known this, but it seems like Doctor-Common-Sense 101 to make sure to tell the parents the diagnosis.

It took a total of 2½ hours on a quiet night in an emergency room to take care of something relatively minor (I think).  Every time I poked my head out of the room we were in, I could see the staff (including the doctor) congregating around the main desk, casually talking, moving around slowly. 

I know… Moms are biased when it comes to the treatment of their children and this whole story could be written with a slant.  But tell me this: why are prescription drugs so expensive?  Could it be because drug companies constantly advertise products that we cannot purchase without a doctor-written prescription?  Does this make any sense?  Don’t you think this promotes self-diagnosis?  Think about it – you watch the commercial, you decide, “Hey, I think I need that product and will ask my doctor about it like the commercial advises.”  Now, instead of your doctor deciding what is best for you, you have succumbed to marketing tactics just like every other product uses.  You can pick up your prescription right after that burger or new pair of shoes that the preceding commercials convinced you you needed, too.

And while we’re talking “Healthcare”, why isn’t Dental Care considered healthcare?  (Don’t stop me, the crank-o-meter is in high gear now :-)  It has always astounded me why teeth are not considered a part of the body like everything else.  They have their own separate system of care, one that is difficult for some to get – and a lot who actually have coverage don’t have enough.  Do you realize that chewing is the first stage of digestion?  And we chew with our……. TEETH.  If our teeth fail us, the entire digestive system is compromised, which now crosses over into the real healthcare world.  It’s not just cosmetic, it’s not a luxury.  In some cases, an infection in a tooth that is not cared for can spread to the brain, killing a person.  Under what system does that fall?  Mortuary?

Makes me crazy.  But it makes me feel a tad better writing about it. 

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