For the Want of a Card

This post will be rambling.  I'll warn you.  My thoughts on it aren't organized and that feeling of have to get it down isn't there.  But maybe I will be able to get it going.

First, the title is fitting.  Back in October I was going through a real rough patch.  Feeling kind of crappy, health insurance worries, and the car needing a transmission.

Well one day I decided that I was going to celebrate Christmas, 2019 as my First Christmas past my Expiration Date.  Now the question you ask is how did I want to celebrate?  Cards.  Cards from everywhere.  So I did this post on Jean's Bucket List on Facebook and explained what I was thinking and hoping for.  It was shared over 38 times, which made me happy.  I got Halloween and Thanksgiving cards, about 40 of them.  I was hoping to get enough to fill the banisters  and the cards would be the decorations.

The cards would come in maybe four or five in a week.  But as of December 13 (I'll explain in a bit why I remember that date) only about 1/4 of it was filled.  So my big sister Carol, being the way she is thought I should have more cards, so she sent a link to my post to WJLA news here in Northern Virginia.   December 13 Caroline Patrickis from WJLA contacted me (by the way if you know her congratulate her!  She's engaged!!)  She came out and we sat and talked for about an hour, maybe a little more.  Later on the 6:30 PM news they ran a segment.

Mind you I wasn't overly concerned about it, I was more focused on the fact my son gave me a ticket to come visit he and Liz in New Orleans - which was only a few days away.

Saturday, was a rough day for me.  Felt out of kilter, and slightly depressed.  I walked down to the mail box and opened it.  What was in it caused me to jump.  Someone left me Gerber Daisies.  I love them, their color is so bright!  There were a few cards too.

Monday when I got the mail there were two big bundles stuffed in the mail box.  Around 380 pieces of it.  I was s
o shocked.  So I got them open, and got to work hanging.  I still felt a little off, so I took a nap, I was dreaming about BBQ.  I wanted BBQ. 

Next thing I know Mission BBQ is knocking at my door with food!!  I know I had a dumb look on my face.  All I could think of was I some how ordered BBQ in my sleep.  The young lady told me, no it was a gift from the Mission BBQ on Garrisonvile Road.  I was able to eat BBQ for dinner that night, lunch and dinner the next two days!!  The post office also showed up, again, this time with two trays of cards.

I was totally floored.  Then I started noticing where they were coming from, all over Virginia and Maryland, and neighboring states.

Tuesday and Wednesday deliveries were repeats of Monday, not a bundle, but two and three trays or totes of mail.  All I could think was I wouldn't be able to get all of this mail open before I left on Thursday morning!  I had to stay on task, get the house together, make sure the babysitter (THANK YOU SO MUCH FAYE!! My babies are my two dogs) get the cards opened and hung.

Wednesday, I was literally counting the minutes left because of everything.  Then around 6:30 PM people started showing up in the front yard.  Around 70 of them!!  All of them were there to sing me Christmas Carols!  Then the Fire Department showed up with a truck and an ambulance, bringing Santa to see me!!  I felt like crying I was so touched, happy, amazed that all these people did this for me, someone they don't know.  Someone who has been hiding the past year plus.  I kept telling myself I can't cry because I cry really ugly.  But I really wanted to.

People were stopping by randomly Monday, Tuesday and Wednesday.  Bringing cards, candy, cookies. I just couldn't fathom people doing this for me.

Then I left to visit my son.  I was getting daily updates on the mail situation, and it was in full swing.  By the time I got home there were 18 trays of cards in the office, and the day I got home they brought me three more.  I stopped counting at 25 trays and tubs, because they were coming and going.  Think of it 25 trays with an average of 300 cards per tray, that is 7500, seven thousand five hundred cards and packages!

To say I was overwhelmed would put it very lightly.  I have gotten cards from Thailand, Taiwan, England, Kenya, Scotland, Ireland, Norway, Finland, Switzerland, Germany, France, Italy, Korea, New Zealand, Australia, Sweden, Ukraine, Cech Republic, Egypt, Spain, Hong Kong,  and even ANTARCTICA!! Plus every state in the United States.

People took the time to share memories with me.  One gentleman wrote about being at Wrigley's Field.  He wrote it so well that you could almost smell the hot dogs.  Another lady took me on her first tandem jump from an airplane.  One person said they didn't have a special place now, but remember how much love and security they always felt at their Grandparents home.  Many people love the beach for the calming effects of the ocean, just as many love the mountains.  One little boy said his favorite place is the soccer field because he loves to play.  A little girl said her favorite place is with her family.

It amazed me in this time how many people said that their special place wasn't anywhere in particular, but it was their family and the memories they are building and sharing.

People thanked me for sharing my story which gave them the chance to slow down and walk memory lane.  Oh, the memories people shared!

One gentleman, who is very well traveled by reading his adventures said his most favorite place of all is his home.  No matter where he has traveled or the wonders he saw, home is the best place of all.

This is one Christmas that will always forever be in my memory.  The world gave me an experience I will never forget.  I am humbled and so very grateful.

The thing I am most grateful for is people that don't know me, shared a part of their lives, their memories with me.  They opened their hearts.

This has given me hope for humanity.

The Interview  well part of it.  It shows the Caroling.  If anyone has links to the interview or the stories on the Freelance post them in comments.  Please.

Trepidation

Trepidation

noun

tremulous fear, alarm, or agitation; perturbation.

nervousness, dismay, consternation, fright, apprehension, disquiet, excitement, jitters, uneasiness, dread, terror, panic, horror, emotion, perturbation, agitation, shock, palpitation.

Yes, that pretty much sums up the emotions I have been feeling of late.  There is a two-fold reason for it too.

Well, the first one is obvious.  The whole no Medicare Gap coverage for people under 65 that are a hair above the poverty level.  And the whole Part D drug coverage thing.  I mean a co-pay of $3250 for my chemo every month is a bit rich for my blood.  That is a bit rich for anyones’ blood.  Thank God that the drug portion is resolved for the moment.  (Yes, I still have that feeling that something was misunderstood and I will end up with a surprise bill.)

Two weeks ago, a Monday and Wednesday were training.  Job training.  I have been putting in applications to everyone within a short drive of my home.  (There are two shopping centers.) Target called, and would not hire me because I could not work two days a week.  I figure that would give me two days for any tests, doctors’ appointments, and down time in between working.

Lowe’s called.  I got a hired for a part time job in Paint.  I cannot work over 15 hours a week or I lose disability and Medicare – hey 80% of doctor’s visits and hospital stays are better than zero.  I need to find a way to save money for the car and other expenses.  Like covering the 20% cost on doctors’ visits.

They do have health insurance for Part time employees, but it is a wellness plan with no hospitalization.  The cost of the plan per year is not worth it, it only covers wellness visits, besides the $40 a month can cover part of the cost of the monthly oncologist visit.  They also offer vision.  I need to get my glasses changed.  Glasses and exams are not cheap either.  So, vision insurance for the win.

Since then I have put in two four-hour shifts.  To say I have been apprehensive is putting it mildly.  I mean I fall short of full-blown panic attacks.

I was honest when I interviewed them.  I have cancer, I am out of shape.  I can lift 25 pounds but do not expect me to be fast.  I can do things but I am slower than a person that has two good legs and two good lungs.  I had originally applied for Lawn and Garden.  But they offered me Paint. 

I would have so failed Lawn and Garden.  I do not know what I was thinking.  Yes, I do.  I wan thinking that the extra money would help.  But being out in the cold and constantly hauling heavy items.  I guess I was thinking more of taking care of plants than the back-breaking work they really do in Lawn and Garden.

Wednesday, was orientation and computer training.  I was a bit uneasy about going.  Not bad, but I was edgy.  I survived.The following Friday was another day of training, but I was so worked up about going I almost did not.  I knew it was finishing the computer training, not being out on the floor.

It did not matter it was computer training.  I kept thinking about when I get out onto the floor.  There will be more exposure to people.  More of a chance to make mistakes.  I can carry a gallon of paint.  The 3.5 gallon is a bit difficult but I can slowly carry it.  I cannot budge the five-gallon buckets.  But I did tell them I was out of shape.  I was on chemo.

My first day on the floor I was in full blown freak out.  But I survived.  And I survived the

second day too.  But I came away with a few concerns about the job and my physical ability at present time.  So, I let them know my concerns, and am waiting for a response.

When they first offered the Paint job, I thought, “Oh, I can handle that I worked in Paint at Home Depot in the early 2000’s.”  At that time, I was running the shelter, hauling 40 lb. bags of wood stove pellets, walking up and down stairs and ladders.  It was before the cancer in 2003.  It was when I had two good lungs.  When I did not have an occlusion on the Vena Cava or tumors in the lymph nodes along the trachea.  One of the things that started me worrying was the “How to Lift Properly” training.  I cannot lift things like that.  I have no left hamstring.  If I squat down, I need one hand to balance to get up.

They need someone who can perform.  I do not want to disappoint people who put faith in me.  I do not want to disappoint myself.  I do not want to disappoint anyone.

But I cannot guarantee it will work out the way I want it to and that causes trepidation.  (Doesn’t that sound like a made-up word?)

I know all I can do is try my hardest to succeed.  I do not want to fail.  Failing sucks eggs in a closet.  I do not like the idea of failing.

This is so out of my comfort zone it is not funny. 

I would rather jump out of another airplane.

Time Keeps on Slipping, Slipping....

For the most part the terminal thing doesn't bother me.  We are all going to die someday.  Just some

of us know it will be sooner rather than later.  To be honest, I'd prefer later.  Much, much later; but it seems later is a very relative term too.  Later to me would be measured in years rather than months.

You guessed it.  Today being terminal bothers me a bit.  There are actually several things that go into it bothering me today - well OK on the days it does bother me; they are not all that often but it happens.

For instance, time does fly.  Even when I am doing nothing.  Before I know it I am making dinner, feeding the dogs and deciding if I want to read or watch an hour or two of TV.  Seriously, I mean a day of nothing.  Vacuum, dishes, sit outside if it is nice.  If I decide to read - well there goes hours.  Another day gone.  Am I a day closer?  I don't know.  To be honest neither does the doctor, but considering that the tumors are growing on the aorta, on the left lung and in the intestine, well that just doesn't give me a warm fuzzy.

I am considered disabled because of the terminal cancer, and the side effects that the chemo causes.  I have really good days, and about a week to ten days of crap after chemo.  I'd love to be working, but I have that conundrum, should I be honest?  Usually things bite me in the rear when I don't do the right thing.

During interviews you do not have to give any health information.  But once you have a job offer, well, that is where things can get sticky.  To be honest, I totally understand it.  I mean do you tell them "Hey by the way now I am hired, I have to do chemo every 3 weeks, am sick for about 10 days after, need time off for doctor appointments, oh yeah CT scans, Echo cardiograms every 3 weeks, and there probably will be an occasional stay in the hospital.  Oh, and they say it is terminal."  Could you see the look on the face?  That would be one to take a picture of.  Not to mention I'd burst out laughing.  But I sort of miss working.  I had a game plan.  Monday through Friday was work.  Saturday and Sunday, field day the house and one project in the house.  Structure.  As crazy as it can make me, I had structure.  I have tried the schedule thing, yeah, I am not the best in the world at it.  But I keep trying.

Although if I do things right I could be constantly on the run - but I'd have to win the lottery for that, oh yeah, I have one ticket I need to check the numbers on.  Keep your fingers crossed.

Yes, I have done some amazing things in the past year and a half - give or take, but I'd rather not be

terminal.  I'd rather not have that in the back of my mind waiting to sneak out and tell me that the clock is ticking, get to living before you die.

I would trade it all, for a "normal" by my definition of life, more time with my family.  More time with Jim, Liz and Jasmine. More time to learn.  Learn what?  I don't know.  There is a whole world of knowledge out there, and I am trying to ingest some of it.

Chemo brain really sucks.  Things get in my brain, but get lost in there.  Remember when we went to France and Italy?  Here is an example of chemo brain.  I had been doing Italian language courses for a year, even before the cancer came back.  Basic beginner, I don't want to look like a total idiot tourist stuff.  What did I remember?  Bango.  BATHROOM.  Seriously.  That is it.  Still can't remember sh**!  Bango, bathroom, sh**.  Get it?  Where is your sense of  humor?

Right now every so often I get the little voice in my head - "Hurry up do this, do something, do that, face this fear, go here, go there, don't worry about finances, eat this, do that, hurry, hurry, hurry, you are wasting time.  You're going to die. Hurry!"

That voice can cause a paralysis.  What to do?  How do I get there?  What will it cost?  Where do I go?  Add that to the normal life things, paying for groceries, utilities and the such my head just gets crazy. Those questions run rampant in my head the days the little voice screams at me the end is near.

It is very easy (I have been very guilty of this) to allow oneself to become isolated and introverted.  It can be exhausting to be around people.  Not because of the chemo, but because sometimes people are exhausting.

For me it is easier to speak to a group of people than individuals.  Hard to believe?  It is true.  Well, as long as I could walk around.  Standing in one place may be a challenge.

When I went to the Intro to Kayaking I had all sorts of reasons why I should just stay home and skip it.  Really, some of them were good, some were from left field.  Why?  I don't know.  Perhaps it was because it was beyond my comfort zone.

Water aerobics is on the horizon.  I actually have a swimsuit I will wear. Tomorrow on the way back

from the mechanic (car is clunking left front, and a hum right rear wheels told you I have first world problems) I'll stop at the pool and see what the schedule is.  Classes at 10:00 would be nice.

I am not depressed.  I know what that feels like, I am just not liking things right now.  No, I am not sorry for  myself.  I will never be sorry for myself.  Cancer has taught me how strong I can be, and how amazing my family and friends are.

Ever see that movie "The Secrete Life of Walter Mitty"?  I am Walter.  I am that person who had gotten comfortable in my life working everyday, paying bills, squirrelling away a little nest egg (those things go fast by the way, so try to double your nest egg, don't learn the hard way you should have doubled it) being forced to face life and do things that I would only dream of and never do.  Only I keep realizing there is so much more I want to do - and time keeps on slipping, slipping.

I just don't want to have it end.

Hearing "You have cancer", and a Burning Question at the End of this.

To be honest I laugh about it now, and to be honest, I laughed about it then too.  Then is the first time I was told I had cancer back in 2003.  Come to think of it, every time they told me it was back, didn't freak out either.  I don't think that is normal.  Could I be off my rocker?  Well, I don't own a rocker so yeah, I could be.  But I don't think so.

I mean really, in reality I already knew.  A lump on the back of my left thigh grew from a golf ball size to about a cantaloupe well, it is kinda obvious.  Then having the manager of the store you are working at notice your leg because the left pant leg was getting tighter on the thigh helped, she actually threatened me!!  She told me if I didn't go see a doctor the next morning (I worked 2nd shift) I shouldn't bother coming in until I saw a doctor and had a note from them!

Well, me being me, and just getting insurance, I got my fat butt to the Urgent Care on York Road.  They told me put one of those wonderful gowns on, and when the doctor came in she asks, in a rather bored, condescending tone - "What is the matter?  How can I help you?" I just stood up and showed her the left thigh, OMG, when I turned around I was looking in a mirror, and her face just dropped. "You need a specialist.  We will find one in your network and make the appointment for you as soon as possible."  Well, if that doesn't all that doesn't give you a clue nothing will.

No, I didn't cry or scream or ask "why me", each time I asked, "OK, what are we going to do, when do we start, don't sugar coat crap, and be honest.  I don't need the kid gloves treatment."

Luckily, all of the doctors I have and had understand where I am coming from.  I have no idea where I get my tenacity or strength as some people call it from.

Don't get me wrong, chemo is awful.  Even the "milder" chemo that people can take orally have side effects.  The antibody chemo I was on gave me 5 or 6 days of exhaustion right off the bat, killed the taste buds, nausea.  Still killed the bone marrow so red blood cell production was down,  white cell too.  Never mind it let the cancer spread.

The current chemo Yolandis (from the sea sponge) is every three weeks, and it takes a week to 10 fays to get back to an "almost" normal.  Side effects that get to me are rapid heart beat, like a pounding in your chest when you do just about anything, and interferes with breathing.  Sucks having sound like I ran a mile just walking up a set of stairs.

Right now I feel great.  My doctor changed my schedule to every 6 weeks rather than every 3.  Mainly just for the summer so I can enjoy as much of it as possible, and stay out of the hospital.  Though those two pints of blood may have just helped my system out a bit too.

Radiation in 2003 sucked a$$.  The burn on the back of my leg was purple, oozed, and burned.  I learned the hard way that Solarcaine does nothing but make the burn worse on radiation burns.  Trust me.

I dreaded having to get radiation in 2011 because it was on the sternum, bra and the such rubbing a radiation burn.  Guess what?  They improved how radiation is given and they can pinpoint it now.  My burn was the size of a dime!!

A challenge has been given me several times, and my response is "I will not go quietly into the night."

Now here is the oddity for me.  Whenever I have cancer, my nails grow.  I mean nails I can put polish on and have people compliment.  I do house work and do not baby my hands, but I have nails!  Every time I had cancer, my nails are awesome till I get tired of them and cut them off and they grown right back.

So why do my nails grow so well when I am given such nasty drugs?  And why when I am healthy, not on chemo are my nails always breaking off or not growing?

I mean really!!

Walking Through the Past - or Stupid Shit I Believed

Dealing with cancer gives you the opportunity to walk down memory lane, perhaps more than any one person would want to.  It can make you remember some of the oddest things, and make you say, "Huh, maybe that has a bit to do with how I am".

Now, I am not going to get into the "feel sorry for me"  or the "abused" story.  Life was not easy for my brothers or sisters, nor myself.  But that is past, and I have come to terms, a sort of peace if you will.  My parents did the best they could considering their lives, I determined to do better and end cycles.  Now I understand where some of my issues came from.  I have  no problems speaking about my past, but it is a different conversation.

BUT you know the stupid shit we were told, that some of us believed, now that is another story!!  So is the stupid shit we did.

I have not a clue what made me think of some of this, maybe part of it is trying to find the family tree.  It is spider webbing out in a couple of directions, but as far as my father's family, it is stagnant.

OK, I freely admit my parents were "older" (Dad 55 and mom 35) and raised with different values, hence, I have had some values I needed to re-learn over the years.  Trust me it has taken years for some.

What am I talking about?  How about that old saying "A woman's place is in the home."  Yeah, I was raised with that one.  Seriously.  I learned to cook really young.  I remember being 5 and scrambling eggs. I still have issues with eggs to this day.  They have to be just about "perfect" (my idea of perfect" before I can eat them.  A little brown on them?  NOPE.  A little bit of the egg white kind of jelly like slime?  ABSOLUTELY NOT!  Brown on an over medium egg?  NO.  Over hard?  Nope.  Over medium if you please, not a speck of brown on the edges, yolk perfect for dunking, and absolutely no snotty white.

I learned to cook, and to clean.  Do laundry.  I learned how to iron clothing, and how to not put too much starch.  I was being raised to be little Suzy Homemaker.  Never could get the hang of gardening though.  But in my defense, when my mom thought learning how to grow vegetables was a good thing, I had no interest.  To be honest, neither did she.  They just opened Neff Pool, a public pool for the neighborhood.  I'd rather be in the water in the summer.  Thank you very much!

So getting back to the "woman's place is in the home" thing.  My parents didn't believe that an education was all that important.  In elementary school, I wasn't allowed to do homework.  That was fine by me, I hated it.  All the teachers were really old, older than I am now, and one of them farted lots.  I remember her being bent over helping one student her butt all near this kid's face and she let one go.  He threw up.

I was a Tom Boy.  I climbed trees, rode my "English Racer" bike at top speed trying to stand on the handle bars (yeah, that didn't work out too well, but it didn't stop me either).  I wanted to play base ball with the boys.  I collected baseball cards.  My dad would show me things in the car engine.  But all that time I was still learning the how to be a good housewife stuff. Hell, my Dad taught me to fight.  I was to defend my younger sister and brother, and if  I was in a fight - I better damn well have won.

In Junior High, Margaret Spellacy, the dress code changed.  (Yes there was a dress code, and girls could not wear pants at all.  Only dresses and skirts)  Girls were allowed to wear JEANS!!  Can you say HEAVEN?  Dress shirts, but jeans!!!!

From that day forward, I wore only jeans.  Until one day in high school, my mom threw out all my jeans.  I needed to start acting like a "lady" and dress that way.  (Don't worry, I ended up with jeans again)

Back on track, no being encouraged for college was not on the table.  Hell, it was a HUGE deal I graduated high school!  I was encouraged to become a "legal" secretary.  Why the hell a legal secretary I have no idea, I wanted nothing to do with law. You do remember that "Tom Boy" thing?  Never really grew out of it.  Parents couldn't beat it out of me either - I mean come on really?  Remember the teaching me to fight?

I was encouraged to do, become a secretary.  At the ripe old age of 17 I was entering the work force as a secretary.  Do your job, get your boss's coffee, don't complain, meet your husband, stop working when you have a baby, and have another baby.  Let's just say I was very conflicted.

I always had a problem with that coffee thing. But here is what I was ALWAYS told:

"SECRETARIES SHOULD LOOK LIKE LADIES.  LOOK LIKE  MODELS.  WEAR MAKEUP ALL THE TIME.  NEVER WEAR PANTS, DRESSES AND SKIRTS." Oh yeah, I didn't swear around my parents.  But...….

Do you know what kind of crap that is?  I actually did that too!  Perfect make up every day.  I did that crap for years.  Hell, I worked at a place where if a female had short hair she wouldn't get promoted.  When I bought work clothes they were always business dressy. Neat, simple lines.  Looked good.

God I can see me as a 17 year old in my first couple of jobs.  Naïve as all get out too, seriously you can be naïve and have common sense, or at least there were time I did.  I got fired from a job because I laughed and joked with the installers.  Never mind it was in front of everyone.  Nothing inappropriate either.  But I have had jobs where I was made uncomfortable because of the double standard of behavior.  My answer?  Quit without notice as soon as you find another job, or just quit.  Then damage the car and not get caught.

If I had encouragement to go to college out of high school, would I have?  Probably.  Did I know what I wanted out of life?  Hell to the no.  What 17 year old does.  Oh, and the only reason I waited till I was 17 to graduate was if I had graduated at 16 I would have needed a work permit and could only work part time.  Besides, who the hell would higher a 16 year old for a job with benefits?

If I could change things would I?  ABSOLUTELY NOT!!  All that has happened to me in the past, the good, the bad, the horrid made me who I am.  All the stuff that made those scars I wear so proudly made me.

It has been a long road to get to who I am today, and I really actually like myself.  In fact I love myself.  You have to be able to love yourself and value yourself before you can truly love and value others.  Oh, and that includes having cancer.  I would not change having it.  It truly has been a double edged sword.

On one hand it has taught me I am stronger than I know.  I have more friends than I realized.  That my children love me, even when I was broken they loved me.  It has also taught me I cannot go through this alone.  I need you all.  I am grateful for you all.

The other hand, it has shown my weakness.  I have a hard time with that.  It has shown me I cannot always be strong for everyone.  I cannot always hold my head up and fight or jump on the white charger and save the world.  Which I have a hard time with.  Such a hard time I hide.  I withdraw.  I am learning not to be such a ninny, but it will take work.



So what stupid shit were you told?  What did you believe?  Would you change it?

Why I Don't Look Up to Celebrities Who have/had Cancer

I really shouldn't watch some TV shows.  Why?  They make me think more.  They make me question.

Well, what does that have to do with the title of this?

Celebrities have money.  Rich and famous people.  I don't wish cancer on anyone, but I would rather hear about the construction worker making ends meet, dealing with cancer, or the mom that over comes cancer and still goes on.  People like me.

People going through things I have and beating it.  That gives me inspiration.  Not some famous actor or actress that gets paid hundreds of thousands of dollars to do a show or movie.  Not some rich Silicone Valley big wig, or even anyone on Congress.

It was either 60 minutes or 48 hours, they did a segment on cancer.  It was a fluke I ended up watching it.  Actually, I have seen a few stories along these lines.

The story was basically about treatments available, insurance, and money.  The all mighty green back.  The bane of the terminally ill.

They did a few interviews.  One was a normal person, like you or I.  Worried about how they are going to pay bills, insurance, co payments.  The hope was dim.

The other family was rich.  Their son has cancer.  Being treated at the best hospital.  The reporter asked how they were dealing with their son's cancer.   Does having money help?  Their answer?  Yes it does.  It opens more avenues of treatment. It allows for better treatment.  It gives more hope.

Huh, even they realize it.  So I'll pass on the celebrities, and admire folks like me.  Folk I can identify with.  Don't get me wrong, celebrities can help with education, some people will only listen to them.  But me, I'm for the "normal" guy.  Let me hear their stories.

Then I got caught up with a show called The Resident.  Yeah, it played right into the if you have money you have a better chance.

I would highly recommend catching up on the show.  It is a show that is more than the normal hospital shows.  It gets into some of the politics of hospitals, like insurance company issues, how much per bed they want to make, shady dealings, you have to watch it.  Many different layers.

This one isn't very well written, but hopefully it gets you thinking too.

What does Terminal Look Like?

I am in a very interesting position.  I have cancer and I am terminal.  Yes, it is.  It is amazing to my how many people have preconceived ideas on what a terminal cancer patient should look like. Or for that matter what a cancer patient looks like.

There are many of us that do not fit those preconceived ideas, we almost look normal.  Whatever normal is. I don’t fit into any of those preconceived ideas.

What do I mean preconceived?  Well here are a few thing I have people tell me.

People who have cancer and are getting chemotherapy are bald. 

No.  Absolutely not.  Chemotherapy drug are harsh.  They kill cells.  Both healthy and cancerous.  But not all people go bald.  In fact, there are some therapies put into use right now that actually help the patient keep their hair.  It is cold therapy.  Not everyone is able to use it, and it may not work for as well for every patient.  But for those who losing their hair would be horrifying, it gives them options.  Some people only have their hair thin out.  One year my eyelashes fell out along with all my hair.  That was hard to deal with.  I like my eyes.  My eyelashes are my vanity.

That was my experience with the antibody chemo therapy - thinning hair.  I hated it.  I’d rather be bald.  I kept my hair buzzed. To me it is better to be bald rather than have balding spots or thinning hair. 

All cancer patients are always sick and vomiting or at least nauseated.

When I went through cancer in 2003 I would have said this is the truth.  But over the years they have made huge leaps in anti-nausea drugs. 

Don’t get me wrong.  We still, well not everyone, but I still get nauseated.  But the anti-nausea drugs work wonders.  There are even what they call “break through” anti-nausea drugs.  Basically, they are a medication you take when your normal medication does not stop the nausea, and you feel like vomiting up dinner from last year.

Cancer patients don’t eat. 

Well, the further on in your chemo, some may not want to eat.  Some don’t eat early on because of sores that can developed in the mouth and throat.   Believe me when we feel like eating, we eat.  Mainly because we know there are those days we don’t feel like it, or will feel like crap.

I have days when every couple of hours I am eating something.   Doesn’t matter to me healthy food or not.  Calories.  That is all I am trying to get into my system. I know there will be days I don’t want to eat, or eat very little.  So, when I can I do.  My body will store it and when I need it I will have it.  Unfortunately, there never is enough stored.  

In fact, once this is published, I am going to have pumpkin pie.

All cancer patients are extremely thin. 

Um.  No.  Depending on the treatment, and the amount of steroids given.  Yes.  Steroids are routinely given to cancer patients.  Helps with some of the side effects.  Unfortunately, because of the different body types and reactions, some people swell up.  For those patients it is heart breaking.  I have no idea why it happens.  It just does.  

Not all patients are deathly thin either.  Some may get to that point later in treatment.  But not all.  Everything depends on the drugs used (if they treat with drugs) and again the body’s reaction.

All cancer patients are tired all the time. 

Well, there is some truth in that.  But not 100% of the time.  Depending on the chemotherapy, and cycle, a patient can feel exhausted one week, tired the next, and almost normal the following.

One of my treatments a few years ago was the MAIDS treatment.  Chemo for a week, then two weeks off during which I received radiation therapy.  First week I felt like crap, second better.  When the time for chemo came around again, I felt pretty normal.  Later maybe cycle 4 or 5 I would be tired.  Exhausted all the time by cycle 6.

Terminal patients look like the dead walking. 

Well, maybe nearing the end, and some prior to but not all.  Just because I don't look half dead doesn't mean a thing.

Cancer patients are sick all the time or should always wear masks and stay away from everyone.

Not all the time.  We are more susceptible to getting sick if the chemotherapy kills off our white cells, or interferes with the production of the red blood cells,

Usually when that happens, we end up in the hospital, but not all the time.  A couple of times my blood counts were way down, but I felt fine, even felt almost "normal". 

When the blood counts are normal for the most part we are normal.

Cancer patients are always depressed.

No.  Not all the time.  Yes, there are times we get depressed.  It is only normal.  It gets tiring having blood taken, running to the doctor, treatments, hospital visits, MRIs, CT Scans and the such.  

I prefer to laugh and go out and enjoy life, but yes, even I get depressed once in awhile.

I am terminal.  For six months I received anti-body chemo therapy. Every other week. My hair got thinned out, so I buzz cut it.  I’d feel good the day after. But then for about three days I’d be tired.  The further along in the cycles, the longer the tiredness lasted.  Lack of appetite usually comes from the way chemo affected the taste buds.  Everything ends up feeling yuk, and tasteless.

We have changed my chemo to Yolendes.  Sea sponge derivative.  I have had one cycle.  I get chemo for 24 hours.  I go home with a working pump, go back the next day and have it removed.  The day after I feel good.  Again, those steroids.  The third day I start feeling, sick.  Like a cold or flu.  Then it gets worse for about three or four days.  Gets better after that.  Exhaustion so bad that getting out of bed is a feat in itself.  Eating?  No thank you.  Drinking?  Sipping water every so often but not enough.

Chemo affects the production of white blood cells.  When I was on the Anti-body I got Neulasta.    I prefer the Neaulasta and its issues to the shots.  Nupegen shots burn like hell.

They skipped my second round of chemo with the sea sponge.  Because the chemo made my white cells crash.  If you do not have a good blood count, they don’t do chemo.  They would be endangering your life if they did.  I assume it is the same way with all chemo.

I spent a few days in the hospital because of pneumonia, and it was after chemo.  The doctors at the ER were spazzing out  because my counts kept dropping.  I kept telling them it was the chemo treatment.  They finally decided that a blood transfusion would be a good idea.  They actually do help.  Bumps up the red count.  

I get told you can’t be terminal.  You look good.  Your skin is in good shape.  You don’t look sick.  I have had three weeks to recover from that treatment, so I look better.  The further into treatment I get the longer the side effects will last, and I will end up fitting that image people have of terminal. Well, maybe.

But I plan on doing things my way.  Treatment is to slow the cancer, or keep it in place.  It won’t cure it.  I am going for the quality of life.  If the chemo lets the cancer spread.  We are onto the next one.  If the time spent recovering becomes longer, or my system starts crashing and I end up in the hospital more, the treatment changes. Or I just stop chemo totally.  Boy, then I will end up fitting that image.

Please, just because a cancer patient doesn’t look like a dead man walking, don’t assume they are lying, or exaggerating.  Just because we laugh, and joke and look strong, don’t assume.  Cancer patients are great actors and actresses.  I know.

Random Emotions

If someone is reading this, I thank you.  I don't know if anyone really reads or pays attention, or even thinks about some of the stuff I write.  Opening people's thought processes and perhaps helping them view things in a minute change of light would be nice but, I don't know no one really says anything.

Don't expect a happy, serious, uplifting, courageous, point of view of knowing I am dying.  No laughter this time.  At the moment I don't have any to share.  Lots of people with cancer will get to this point at one time or another.  Maybe it just took more for me.  OH, and please if you are offended by cussing, well, you may just want to pass this one up.  This will be one that is raw emotion, no filter.

Had the 24 hour chemo Thursday.  Took the pump off Friday, felt pretty good.  Woke up Saturday, feeling ok, kinda rough, but gotta live life.  I went to a Toastmasters, and was there maybe 20 minutes before I had to leave.  Sat in the refreshment area for another 20 minutes till I was sure I was ok to drive home.  Lost three freaking days to nausea and exhaustion.  I don't mean the sleep another 15 minutes.  I mean the type where your body says fuck you you aint' doing shit.

Anyone who has been to my home knows I like it neat and tidy, my oasis.  My idea of doing anything for the past few days was opening a can of soup, draining the broth in a bowl, nuking it,  eating part of it and be happy that I put the bowl and can on the counter rather than dropping it.

What does it mean that I am told I am brave?  Hell, I don't know.  I have no choice in the matter.  I pulled the short stick on life.  SIX fucking times.  Seriously, once wasn't enough, I just had to make sure that it was as bad as I thought.

Brave, yeah right.  Bullshit.  I would say I made this bed, so now I have to lay in it, but I didn't, life made it, but I still have to lay in it.

Graceful?  Courageous? Dealing with dignity?  How is that, someone please explain to me.  Because I laugh?  I have no choice.  Crying isn't an option.  Shit I remember the last time I really cried, and no one  that was around knew what to do or how to react.  Come to think of it, I don't know exactly how to react to someone crying.

So many think I have my shit together.  Or that I have my little ducks in a row.  Those little bastards are flying everywhere and shitting on everything.

I am going to die sooner rather than later.  Wrapping your head around something like that isn't the easiest thing to do.  Although, I have had since 2003 and several trial runs to do it.  Nothing like it is inoperable, and spreading to make trying new chemotherapy sound appealing.  Hell yeah, use me as your ginneau (shit I can't spell that) pig, I'll give it a go. Maybe the cancer won't spread!  You see the line rounding up around the building.  A huge line of one.  ME.  At least where I am.

Dying.  I don't want to die.  I want to find a fucking job and work, pay my bills, and make my children proud of me.  That is what is most important to me.  I want them to be proud of who I became, not the lost idiot who had no back bone I was.  I want them to have more memories of me that are fun and good.  I don't want to go.  Not yet.  I am not ready.  But it is something I have to face every day.  I have always been proud of them.  Even when I had my head up my ass.  I knew I did two things in my life right. 

I want my sisters to learn to communicate better, rather than the knee jerk reaction of lashing out when they think they have been wrongs.  Temper has always been a bad thing in the Caputo family.  Problem is it flares fast, and lasts.  They need to step back and ask, why did you say that?  Or at least think before they speak or type.  The hardest thing in the world to do.  You have no idea how many times I have typed something just to delete it after I calmed down.

All my friends I want to know that I am horrid at  communication.  Always have been unless it is the written word, and then I am bad because I forget to mail stuff.  The only person I ever was 100% jolly on the spot when mailing something was when Jim Sr. was in college.  I knew how many days it took a letter to get to him and back, and I would read each letter, write and run to the nearest mailbox with the soonest pick up.

Honestly, I am not ignoring you.  I think about my friends constantly.  I know actions speak louder than words.  To be honest, I don't have the words to express what friendship means to me.  I have always been that odd ball loner kid.  I quake in my boots in social situations.  I actually am introverted.  I hide it well.  Huh, I was that odd ball loner kid, and I am an odd ball adult.  Lately, it seems that I am living on something that is starting to become an island.  Everyone is moving.  One of the reasons I made myself go to Toastmasters, I am becoming that crazy lady with cancer and two dogs.  Guess I will have to see what Senior Activities there are.

Back to having my shit together and dying.  I don't have my shit together.  I am the most unorganized, lost soul I know.  (Please don't take the lost soul religiously).

I only started pulling my head out of my preverbal ass back in 2008.  I was becoming a person I didn't like.  Rescue can do that to you if you stay too long in it.  I stayed too long I think.

So what happened in 2008?  I got a call.  There was a job opening in BaseTel.  I said ok, well after I asked my ex, turned the shelter over to a great group of people who are running it.  (I literally stepped away, thick headed ownership issues).

Even got divorced in 2010.  Hope he is happy with whoever he is with.  Seriously.  Everyone deserves to be happy in this life.  As long as they are good to each other and good together.

Over the years here, I have paid off bills, helped others anonymously, even had a nest egg.  (Had is the active word here.)  I thought the worst for me was when the contract ended and I lost my job.  Been looking for one ever since.  Phone interviews, even an in person couple, but no job.

Guess I was wrong when I thought the worst happened.  Now I need to figure a way to get a job, pay bills, do chemo that makes me sick, afford insurance (car and health), keep a roof over my head and food on the table.  Not much.  People tell me not to worry about money.  Well, that is hard.  Especially when it pays for the things that keep you alive.  Even if the time is limited.  I think the one thing that all cancer patients worry about is money.  I couldn't imagine being faced with the possibility of being homeless and having cancer.  Even if you have someone you can move in with, cancer wears  on everyone, and you could soon become that anchor around someone's neck.

At the moment I don't feel as raw as I did when I started.  I've calmed down, there are still lots of things I need to address, but right now, I don't want to.  But I can't let that become a habit.  Not doing something.

Do me a favor.  In the comments section pick a number 1-52.  The first six numbers that are different I'll invest a dollar for a lottery ticket.

What will I do if it wins?  Pay bills, support sarcoma research, random acts of kindness to strangers, help family and friends.

Having a sort of rough day

I woke up feeling ok.  Actually slept through the night.  Got up only once!  Seriously for me that is amazing.  I try to drink plenty of fluid to flush out the drugs.

But still I am having a rough day.  I know it is basically hormones gone crazy.  Long lasting drugs have long lasting effects.

I felt ok, then I turned on the TV.  What a shock.  So much negative things going on, so many people needing help.  I say my little prayer for everyone.  It is a simple one, may the world and all it's people know healing, both physical and mental, have a roof, and food.  But most of all develop the willingness to try to understand one another, accept we are not the change and learn to work together despite the differences.  Oh, and for me, I'd like to win $100,000.00 after taxes and giveaway to others.

So why is it a sort of rough day?  Regular life seems over whelming right now.  Actually, I feel better than I did a couple hours ago, I sat outside and listened to the birds and watched Bailey and Sasha run and play.  It helped calm my mind and emotions.

Still a bit overwhelmed.  Just by things that need done, lists that need completed, budgeting, needing a job.  I don't think the fact my left foot/leg still is swelling and aching.  They can't figure out why either. I don't think the limpy gimpy helps the job hunt.

A woman I know of (because I know her children) cancer is back.  They are draining her lung today.  I pray it goes well and somehow it goes away for her.

So many people with cancer.  So many with it coming back.  It is overwhelming.

I am stressing over health insurance too.  Cost.  It is going to go up, I know it is.  Do I stay with the Cobra for one more year or try for Medicare?  Social Security said, "OH, you are disabled!" but the disability payment doesn't start until December.  No back pay either.  You have to be out of work for 5 months.  The whole thing is a pain in the ass, but something is better than nothing.  And unemployment doesn't cover because of the disability.

Oh, and folks, just because someone gets disability, don't assume it is easy street.  If I pay for health insurance the mortgage/rent is short, or visa versa.  Not to mention other things like electric, water, gas, car insurance.  The only reason I say this is because of a comment someone made.  Oh, so you won't have to worry about anything once it kicks in.  No, people still have to worry, and scrimp and save.  So do me a huge favor, the next time you hear someone is on disability, have a bit of compassion for them and say a little prayer that somehow things work out for them.

Ultra sound showed no clots.  X-ray of the knee show a bit of arthritis.  X-ray of the foot and ankle showed a heel spur, which I had no idea was there, and some arthritis, which again I didn't know was there.  The top of the food aches and sometimes it feels like it is burning.  Oh, and the skin on the one side is sensitive.  You know the kind of sensitive that when you touch it is sorta hurts, but you touch it again just to make sure you felt it right?  Yeah, that kind.  You can't help but touch it.

Oh for the record, yes I did eat breakfast, so my off day isn't because of that, no I didn't drink as much water as I normally do yesterday, but I am no dehydrated.

Maybe it is just that damn achy foot.  After a while it can be irritating.

I think I am going to take a nap.  I feel tired.

Speeding Thoughts & Emotions

Wow two in one day.  Amazing isn't it?

I have had an issue with attention deficit for a long time.  I have always dealt with it with lots of caffeine.

It was easy to do as a kid.  My parents made coffee in a coffee urn.  Like a twenty cup one.  They would drink the coffee all day.  Yes, cold.  And guess who was the one that got to go get Mom or Dad's cup of coffee? That lead to me just drinking coffee whenever.

Still love coffee, and have developed a taste for fresh roasted beans, Guatemalan, Peruvian, and Columbian.

Always have had several different thoughts going through my mind at one time, always the one with several projects that seemed like chaos that magically came together in the end.

Yes, there is a point to this.  I have a hypothesis about the new chemo.

Now you are sitting there thinking ok, get on with it what are your thoughts.

My hypothesis is that the Yolandis exacerbates the attention issue, the thought process, and the emotions.  Along with insomnia.

I base it on my morning.  I went to meet a Lawn Contractor to get a quote for Raines Court (no I do not own it, I am trying to help by getting quotes and over seeing work.  I am too old to do this stuff, and physically, not capable to do some of it.)

The Southern Wind Landscaping owner actually called asking if it was ok to be 10 minutes late.  Wow, that is amazing for a contractor.  Apologized when he got there.  In the mean time I was talking to the General Contractor working on the interior.  He speaks English fairly well, but since my mind started racing, and the emotions running like nuts it was not the easiest.

Oh I wasn't nasty or rude.  I knew that the body chemicals are havoc.  But when that happens even the simplest thing turns into a HUGE mountain.

The lawn issues are addressed, and the removal of the wild bushes addressed.  Made me feel better. But then I started making my list for the trip to Lowe's and knowing I need to address items that weren't delivered back on the 18th of September, and I have been going back and forth with them started up the emotional roller coaster again, along with speeding up the thoughts.

Armed with my list, the light that was too big I needed to return and get the smaller version, and information on the order with item numbers of the missing (for the record two toilets and a florescent fixture).

I got to Lowe's at 12:30 left there at 1:30 give or take.  I swear I felt like I was there for three hours, going back and forth from feeling ok to wanting to burst into tears because the toilets weren't delivered.  Never mind trying to keep one thought.

While customer service dealt with their two different systems, once which was down, I rushed here and there grabbing what was needed.  Replacement light, board, outlet covers, floor vents.  Literally I was feeing so stretched out and frazzled, and again wanting to burst into tears.

I kept thinking I cannot wait to get home make ice coffee, sit on the deck and put the gimp leg up.  I grabbed a Gatorade (I crave orange Gatorade when I go through chemo, no idea why.  Never craved anything during my two pregnancies, but I do remember feeling so starved I ate something like 10 hot dogs, give or take).

Got all the stuff to the contractor, he is there working his butt off, amazed that I got two toilets in my car.  He unloaded the car, and I came home.  While I was taking a bag out of the car, I started to calm down.  Which made me start thinking of how this has happened a few time since chemo.  Coincidence?  I don't think so.

All the while I wanted to stop and do a post about the way I was feeling. How things flew through my mind.  The bursting into tears I think was from the frustration of the thoughts flying.  If I could work as fast as they were going, I'd have a spotless  house in an hour and a half.  The one thought I did hold on to was I do not want to just burst into tears.  Not for no reason.  I can't remember the last time I did cry, a real sobbing cry and that is what they would have been.

I can be very grateful, I haven't felt the sadness that comes with those heart racking sobs.

At the moment things are normal in my head.  I am having coffee, and I am going to sit on the deck, listen to a book and look through pictures.  The house still needs cleaned, and my car needs a bath, oil change and the such, but I think the emotional roller coaster I put myself through earns me the afternoon off.

And yes, I am going to talk to Dr. Vaughn when I see  him on Oct. 11th.  Hell, I didn't get mood swings when I went through menopause.

I feel like me.  And that is what counts.