Monday, July 24, 2017

No Really, Chemo Brain is a Real Thing

My last chemo treatment was May 12, 2015; over 2 years ago.

I have come to the conclusion that chemo brain is not only a real thing but it's a permanent thing.  I think it's also something that can be triggered.

I relate to that photo; although, sometimes I feel like my brain is empty instead of cluttered. Either way, it sucks.

I got into a very minor traffic accident last week.  At the moment of impact (which is an exaggeration, I was slowing from 25mph and the woman who hit me had come from a dead stop) my brain started to spin.  I was acutely aware as I pulled onto the gas station driveway of 47592756291 thoughts in my head all at once fighting to get out, or stay in, or combine with other thoughts.  I cannot imagine what a hot mess I would have been if this had been a serious accident.

At the police station while completing the police report, I was asked if the air bags had deployed.  Dear lord!!  It had never occurred to me that the air bags could have deployed; again the thoughts whirled in my brain. 

I have locked myself out of the house with a set of keys that opened a different door to the house but it took me 10 minutes to realize that!! 


I have to be much more cognizant of getting enough sleep because lack of sleep makes the chemo brain flare.  Sometimes the fact that it is Tuesday makes it flare.  Don't get me wrong, I am grateful to be healthy and in remission but I would give anything to have all the thoughts I used to have in my head, up there where they belong and in order; not twirling around waiting to disappear when I need them most.

If I am not trying to remember something I have forgotten, it's the struggling  to pay attention for long periods of time.  I can empathize with people who suffer from ADD.  I will often tell myself to focus and 30 seconds later am distracted.

So, when I tell you something for the 2nd time or 8th time, don't get impatient, I don't remember everything anymore.  Somedays, I am lucky I remember anything, or I will remember the most random things.

When I don't tell you something...don't be angry.  I forgot you needed to know or I forgot what it was I was supposed to tell you or BOTH.

When I haul my black binder to the latest music recital...I know the words to the song but sometimes my brain tosses the music right before I begin singing.

When I look at you blankly and I should know you...I do know you, it's just the rolodex in my head is jammed.

 I write myself notes, and carry notes to remind myself to read the notes!

Other days, everything is crystal clear and things run smoothly; but I know it's a matter of time before everything scrambles again.

By far, the chemo brain has been the most frustrating part of my journey.

Tuesday, July 11, 2017

situational outrage

As we have gone through the last couple of years I have noticed a startling increase in what I like to refer to as situational outrage.

Who here was pissed at Hillary for the email situation??  I certainly hope you're equally pissed at the ridiculousness that has spewed from the White House daily since January 20th.

Who here hates Obamacare?  Are you mad at the insurance and healthcare industries too?

 If not, you might just be pissed that a black man was elected President twice.

 I get it, maybe you didn't like President Obama; that's fine, certainly your prerogative.  You're not EVER going to convince me that a better president is currently in the White House though, so save your breath/letters on your keyboard.

While you're shouting from the rooftops that CNN is "fake news"...have you ever watched Fox News??  Took me less than a minute and an Ipad to prove their "facts" patently false.  And I was not the smartest person in the room at the time.

When you're preaching that progressives should "settle down" and "deal" with our current president...remember, "the world was going to end" with our last President.

You're outraged when you hear about crimes against humanity perpetrated by illegal immigrants.  Were you equally outraged when children and teachers were gunned down by an affluent white man with mental health issues?  Were you pissed as hell when a white man slaughtered people in a movie theater in Colorado?  Or maybe you were angry when the white supremacist killed several black people in a church in Charleston?

I live outside of Chicago.  For the last couple of years there has been a running gang war that has increased the gun violence in the city exponentially.  Many shootings go unsolved because people don't speak up.  People don't speak up because they fear repercussions from gang members.  And the situation snowballs.  People in the worst neighborhoods are outraged that the police don't do more.  The chief of police is outraged at the people dying in the streets and it goes on and on.  How about if you see something SAY something.  The police cannot protect you if they don't know who they are protecting you from.

Don't even get me started on the issue of guns on the streets.

Really people, you cannot pick and choose what to be outraged about and expect to be credible to the people around you.

Sure, you don't like abortions.  Who does??  Seriously, find me someone who does.

But while conservative "Christians" are voting to defund planned parenthood because abortions are among the services PP offers, keep in mind, that they are also eliminating free or inexpensive care for those who desperately need it and they will need it more if Obamacare gets repealed.

Let's go back to Hillary's emails...she is a 70 year old woman; think about it...find a 70 year old woman (or man for that matter) and ask if she knows what kind of server her emails are arriving on.  Should she have known??  Maybe, but I'll be honest, that's on the government IT team.  Her job was to be Secretary of State not supervise the installation of servers in her home or office.  While you're chewing on that there is a seventy something man in the White House tweeting everything that has or hasn't gone on in his life recently.  A lot of the time it doesn't even make sense!!!  And Twitter is secure, right??  Where is your outrage??

Picture for a moment our last President pulling a stunt like covfefe, or attacks on newspeople from MSNBC.  There would have been riots against him in the streets.  The Fox News studios would have imploded with outrage.

Where is your outrage when the speaker of the house, the senate majority leader and various communications people at the White House step to microphones day after day and spew BULLSHIT??  We as Americans deserve better than the shyster (thank you Grandpa for that word) currently posturing as president.

I'd love to see 45 held to the same standards that some held our last President to.

Ah yes, but 45 is a novice...he's new to this, he's not a politician.  That's right...he's a senile seventy something year old man baby who is currently leader of the free world and until that situation changes, I am going to be outraged.

Saturday, July 8, 2017

Just Smile

So driving to work this morning I saw a runner coming towards me on the street.  Now I know some runners and they never seem to look happy while running.  Most of the ones I know are happy they are runners and proud of their running accomplishments

 but while running, you'd never know it.

I smiled out the window of my car and the lady running...


I think I also noticed an extra spring in her step as she continued on.

I have always been a smiler but when I lost my hair I found I did it more when out in public.  I also wasn't a big selfie person until I lost my hair.  To me, smiling was like an ice breaker for all involved; for others
 because people stare at women when they are bald, for me because I hate being the center of attention.  So, in the early days of chemo and afterwards when I returned to my office I smiled at people as I passed them or as I caught them looking at me.

Many times it triggered a conversation; as my hair grew in the conversations were less about the hows and whys of my baldness.

By the time my hair grew in, smiling at people was a habit.  I was more shy and reserved before getting sick.  Now...honestly, I don't care what people think of me, I know the kind of person I am and I am tired of the negativity that permeates life these days.  So, I smile at people I pass in the hall at work, on the street when out walking, or in the aisles at the store.  Most smile back or say hello.  I am sure some think I am crazy.  I hope that my smile or greeting makes people happy or at least less sad, angry, moody, fill in the blank.  It makes me happy.

There is way too much stuff making people angry these days.

So, if you see me out and're probably going to get smiled at...unless you're driving poorly.  Then you'll probably get introduced to my car horn...


Thursday, June 29, 2017

Deflect and Dodge

Copy and paste this link into your browser and read the op-ed.

Let me know if you're not outraged by the end.

45 was tweeting this morning.  Obviously he is deflecting from his republican backed healthcare bill which is failing (a favorite word of 45's) with his own party.  What he was tweeting could be considered libel.  Were you outraged?  Or were you someone who thinks the press is bullying 45?

That's rich...people are "bullying" the president of the United States.  How does he solve the problem??  By bullying a member of the media...via Twitter.

He's a teenage boy who needs to be sent to his room until 2020.  Oh yeah...that same teenage boy is president of the United States.  SMDH

That's "shaking my damn head" for those not into text speak.

Now I know you may read this and say, she's off on a political rant again.  You're damn right, I am.

Who thought this fool as president was a good idea?  I know, there were those who "survived" 8 years of Barack Obama. OMG you had it so horribly...we came out of the worst recession since the Great Depression of the 1930s; which in case you're not into doing your homework started before President Obama was elected (look it up).

Did you worry nightly that Pres. Obama was going to send the country into nuclear war by saying or tweeting something stupid?  No, you didn't.  You also didn't have the DAILY WTF moment when 45 or one of his flunkies opened their mouths and said something stupid.

For those of you that have blamed Pres. Obama for every negative thing that has happened since circa 2006 (and continue to do so), shut up and get a grip.  Tell 45 the same.  He is the president now so everything that goes wrong (how much time do you have?) is on him.

I know some people who support 45 who keep saying, everyone should just step back and let him do his job.  Does he even know what his job is?  It's not all photo ops with sports teams, campaign rallies and golf Donnie boy.  Put the Blackberry down, hire some staff, and get to work; it's been almost 6 months.

Has it really only been 6 months?

Health insurance is hard.  You bet it is.  It's hard and it's complicated and it's clear that your party doesn't give a damn about the average citizen which is why this crappy bill lingers with fewer and fewer supporters by the day.  Healthcare shouldn't be a luxury; not in the greatest country on the planet.

Let's rebuild the coal industry!! Woohoo coal!!  Seriously?!?!?!  There are about a million reasons why that is a fairly stupid idea.

Let's defund the arts--yeah, no one needs those (SAID NO ONE EVER).

And yet 45's supporters stand beside him like an abused spouse.

What are ya'll going to do when you're without health insurance?  I suppose you could "get a job" like Kellyanne Conway suggested.  When are you going to stop making excuses and take responsibility for your choice?  When are you going to stop coddling your choice?   How many times did you hear Pres. Obama complain about the press?  Call the press fake news?  Single out female members of the press and speak foully of them?   If he really and truly is a teenage boy, he's too young to be president and frankly he's so out of touch with reality, I daresay he's too old to be president.

Don't worry though, I am sure he's working very hard this afternoon...counting the people that attended the inauguration back in January.

Thursday, June 22, 2017

I Have Some Questions...

I have some questions and I might actually want answers to them.  Feel free to comment.  I shouldn't have to post a reminder to keep it clean and respectful but I will anyway because well, let's be honest; being respectful is becoming a lost art.

Why should only the very wealthy be able to afford health insurance?

Why is healthcare so expensive?

Maybe I should have typed those in reverse order.

Before I got sick, I didn't think much about health insurance.  I had it but other than bi-weekly deductions from my paycheck and the occasional co-pay, I didn't use it much.  I really had NO CLUE how lucky I was.

Did you know when you are diagnosed with non Hodgkins Lymphoma on January 16th; you pretty much have met even the largest deductible on January 16th?

Before getting sick, I didn't know what an out of pocket maximum was.  Do you know what it is?

I have made it pretty clear where I stand on the current state of the cost of healthcare and health insurance in the US these days.

I find it interesting and more than a little ironic that there are those in this country that want to blame everything that is wrong with the healthcare and health insurance industries on the 44th president of the United States.  To them I say, "Get a grip."  Both industries were a mess long before 44 was old enough to be president.

Healthcare costs are increasing (sorry for the Captain Obvious statement).  Isn't part of why they are increasing due to increased costs of malpractice insurance?  Maybe you shouldn't be able to sue your doctor for malpractice if you have a hangnail.  I am not suggesting if there is true negligence that people do not sue but clearly the system is being abused.  Don't think for a minute that a doctor is going pay ginormous premiums to cover themselves in case the human part of them makes a mistake and a patient wants to sue them for $451,586,325,669,541 and they aren't going to pass the cost on to the very patient taking them to court (and every other patient visiting their office).

You know I read somewhere a person was blaming Obamacare for the fact that they had to wait an extraordinary amount of time in the waiting room and then the exam room of their doctor's office.  I hate waiting as much as the next person but let me ask a couple of questions...

Were you the only patient there that day?
Are you the only person on earth?
Are you more important than anyone else?

The day I was diagnosed, my first stop of the day was in my general practitioner's office.  I hadn't slept a night through in weeks, I wasn't keeping food down, I had lost roughly 30lbs in a matter or weeks.  My GP had read a CT scan that had masses on it.  She shared that info with me and I went to pieces.  She spent more than an hour with me while I processed what she was telling me.  I am sure I jacked up her patient schedule for the rest of the day.  In the waiting room there are posters that apologize in advance for any delays in service due to unforeseen circumstances.  I am grateful for the time she spent with me when I was an unforeseen circumstance.  I think about it often when I am passing the time in a doctor's waiting room.

Did you know that the cost of a head, abdomen and pelvis CT scan went up $1300 in 6 months?  Did you know I was scanned in the same machine each time?  I am guessing that the machine is paid for.

Each of my chemo treatments cost roughly $25K.  That doesn't include the $6500 Neulasta shot I got the day after each treatment.  Neulasta is a wonder drug.  Kept my immune system from imploding each time we sent poison into my body to kill the cancer.  If you google the cost of Neulasta, it appears that it bills anywhere from $3000 to $9000 per dose.  So, we're paying for development costs, testing costs, advertising costs.  I am sure there are more costs but $3000-$9000 PER SHOT?  Don't even get me started on Epipens.

When is the profit made "enough"?

When did hospitals become profitable businesses?  Who is footing the bill for these profitable businesses?  Look in the mirror.  Do the Teslas and Porsches in the hospital parking lots belong to the doctors or the hospital administrators?  I know where my money is.

Maybe some of the outrage at Obamacare should be re-directed.

Time to look at the health insurance industry.

Insurance is a means of protection from financial loss. It is a form of risk management primarily used to hedge against the risk of a contingent, uncertain loss. --from Wikipedia

We pay for this protection.  Over the last several years (yes, even pre-Obamacare) we would pay more each year for less protection...unless you were lucky and your company (or the American people) paid for your insurance.

Have you ever read an Explanation of Benefits (EOB)?  Some are easier than others to decipher.  You have the cost of service (what the doctor or hospital bills), what is allowed by the insurance company (what the doctor or hospital is allowed by the insurance company to bill or a discounted rate), what the insurance company is going to pay, and the balance owed.  Why don't we price health care services more realistically?  Insurance would cover more and not need to be so expensive.  Yes, I know I am over simplifiying.  But why do we need to over-complicate?  The hospital can bill at $6000 but if they only collect $3000, their "income" is $3000 not $6000.  So the hospital bills $3000 and the insurance company covers 80% because the hospital is in network...out of pocket = $600.  If costs are more realistic, maybe insurance companies go back to covering 90% or 100%. 

Insurance companies want to make money, I get it.  So do doctors, drug companies, and hospitals.  Trust me, I get it.  It goes back to an earlier question...when is the profit made "enough"?

Where does the line get drawn?  Should the CEO of Mylan have 5 homes or should the average citizen be able to afford life saving epinephrine when their child is having an allergic reaction?  Should chemo only be available to those whose combined household income exceeds $200K?  How many people reading this have lost their jobs in their lifetime?  How many have had to figure out how to pay for what insurance doesn't?   

I hear a lot of conservatives talk about what should and shouldn't be covered and who should and shouldn't have to pay more.  I hear it from progressives too.  

What about those suffering from mental illness?  We've established that there is a good part of the population that think everyone should have a right to bear arms.  So you give someone suffering from mental illness access to a gun...but there are those that would deny them access to affordable mental healthcare???  We're NOT living in a third world country.
I am not even going to entertain the topic of immigrants in the US.  That is another blog post entirely.
So...who should get good healthcare?  Only those who work?  Only those who can afford it?  What is a fair price?  What should that price cover?  Should you get to choose a doctor you are comfortable with?  Should you have to mortgage your house to cover the cost of your prescriptions?  Yes, I know some of my questions are absurd but it goes back to...when is the profit made "enough"?
People are so quick to blame Obamacare for all of the world's problems which is misguided and frankly fairly ignorant.  The cost of healthcare and health insurance was an issue before 2008.  Where is the outrage against the forces driving up the cost of healthcare and in turn the cost of health insurance?  

I wish I had answers to all of these questions.  I know I think differently about my health/healthcare/health insurance as I get older.  Getting older is inevitable (unless you die).  What may be perfect health today could be a chronic disease tomorrow.  Maybe it's time to start asking some questions and seriously pursuing answers.

Thursday, June 15, 2017

A Funny Thing Happened on the Way to Beating Cancer

Actually a lot of funny things happened...which was awesome because my oncologist told me that attitude was everything when it comes to battling cancer.

I think it helped that as a rule, I don't take myself too seriously.

My chemo made me lose my hair...ALL of my hair.

  At the beginning of chemo, I would look in the mirror every night while I was washing off my makeup.  First the hair turned really drab and limp.  Then it started falling out in clumps or there would be a cascade when I would sneeze.

One day I am on a conference call with work and in deep thought, I rub my chin.  There, on my chin is a thick coarse hair about an inch long that WASN'T there the night before.  Really?

And of course, when I finished chemo, was cured and my hair started growing back...did it start on my bald head??  Nope.  It was a three way tie, legs, pits and CHIN!

I spent an afternoon in the ER and a night in the hospital getting my diagnosis.  I literally had 10 different doctors come into my triage room and tell me how high my blood pressure was.  Really???  To each and every one of them, I want to say with love..."Sit in a paper gown on a gurney, hooked up to a BP monitor, drinking disgusting chalky liquid that will give you the worst diarrhea  of your life with doctor after doctor telling you that you have cancer and see what comes out of your BP monitor!!!"  I think of them every morning that I take a blood pressure pill.

There was the night in Feb during chemo when I was up watching the Westminster dog show.  I love watching dog shows.  Chris had dozed off...he would sometimes nap while I was awake because I swear he watched me sleep for the first couple of months.  Anyway, at the end of the second night, they announce Best in Show.  I was rooting for the beagle (of course).  She won!!!  I let out a shriek.  Chris lost 2 years off the end of his life.  The thought still makes me giggle.

The divine Miss P.

Cannot add Miss P without including the Best in Show at the Wick household.

Clearly NOT the working dog segment.

One Saturday, while finishing up the prednisone that was part of my chemo regimen, with music blaring, I cleaned my kitchen top to bottom much to my husband's dismay.  The nervous energy that prednisone gives me is off the charts.  I am almost vibrating when taking the large doses of prednisone that was part of my fancy chemo cocktail.

The American Cancer Society offers a make up class...the theory is if you look good, you feel good.  So, every day I got up and even though I was working in my dining room, I showered, got dressed and put makeup on.  Some days, I didn't put in contacts.  My 4 year old niece took great offense one day when I came over sporting my glasses..."Auntie, where are your eyes??" will go down in history as one of the funniest questions I have ever been asked.

My husband is a big guy.  My oncologist is NOT a big guy.  When we gathered to read my mid
chemo scan, we got great news, I was cancer free!!  Chris grabbed Dr. K in a bear hug and swung him around a bit like a rag doll.  I don't think Dr. K thought it was as funny as I did.

I have said it more than once in this blog...laughter is the best medicine.  It heals the soul and sweeps
away your troubles.  This 😂 is one of my favorite emojis.  When I am old and gray I am going to brag about the laugh lines on my face.

I am not going to lie, there isn't much that is fun about a cancer battle but laughter made a not so great situation bearable.


Sunday, June 11, 2017

Stop the Madness

So last week the world fell on its ear because Kathy Griffin in a moment of overt stupidity made a video and posted it on social media.  I am no fan of Kathy Griffin. But I think the world went a little crazy last week.

If her photo pissed you off, the Obama mask with a noose displayed at a Wisconsin football game last fall should have pissed you off as well.

I don't care what your political affiliation is.  Both should make you outraged.

You can be funny without being crude, distasteful, and ignorant.  You can dislike someone without making an ass of yourself.  Saturday Night Live has been poking fun at 45 and his cronies for more than a year.  I am guessing many of 45's followers and perhaps even 45 himself probably don't get half of the jokes but I am also guessing that Barron can watch SNL and sleep at night.

The problem I have with the lynch mob chasing down Kathy Griffin last week is that I do not recall the outrage when Ted Nugent threatened President Obama's life.  He recently got an invite to the White House.  Frankly, Ted Nugent isn't worthy to change toilet paper in a White House bathroom but I am going to consider the source of the invitation.

I was reading the New Yorker the other day and in an article about 45 losing his job, it talked about staffers at the White House having WTF moments.  How many moments have there been since noon Eastern time on Jan 20th?

Regardless of your political beliefs, how have you not said WTF at least once a day since Jan 20th?

My WTF yesterday was Paul Ryan's comment that 45 is "new to this". Really Paul?  Do you have a clue how stupid that sounds?  You and Mitch would have had a field day if Nancy P had said that about POTUS44 in 2008.

The US is becoming the world laughingstock under this administration.  People should be outraged about that.  People should be shouting their outrage from the rooftops.  Kathy Griffin is small potatoes compared to what is at stake here.

Anyone doing something so ignorant and distasteful SHOULD lose their job.  Pretty much anyone reading this would.  45 shouldn't have been elected to his job because of what he has said and done over the years.  The fact that he was speaks volumes to the ignorance that runs rampant in this country.  It amazes me daily.  Now there are those that would say that it was time to get rid of the career politicians...time to "drain the swamp".  The swamp has become a boiling cesspool...worse than it was before.  I agree that fresh blood in DC (and IL) would be fantastic.

We as citizens need to voice our displeasure daily...without the ignorance.