The Most Asked Question - How do you do it?

I'm not sure that today is the best day to be writing this; but the words are rolling around in my head and I can get on the laptop to put them into "print."  The reason I say that is I am not in the best of head spaces at the moment, but maybe that is not so bad.  It means a glimpse into the other side.

I don't know how I do it.  Part of it is guilt.  Does that surprise you?  Yes guilt.  I feel that I would be abandoning the people I love.  Abandoning my son and daughter, my sisters, my friends.  I feel the guilt because I can imagine the sadness that my death would bring them.  I do not want people I love to feel sad because of me.

Here is the other side of the guilt.  I feel guilty for still being around when so many that have been diagnosed after me had passed on.  Survivor's guilt they call it.  It sucks.  I've lost too many people to cancer.  Waiting for it to take me is like waiting for the other shoe to drop.

How do I do it?  I don't know.  I am tired.  I  may have mentioned it before in a post.  But I am tired of cancer.

Once was enough, 2003 was more than enough, but no for some reason I drew the lucky number in the cancer lottery.  2011 was awful.  I lost 2/3 of my right lung that year, and part of my intestines.  Spent three quarters of the year doing chemo, surgery, and being hospitalized.  Even lost a portion of my right pectoral muscle that year.  That was the year the earthquake hit Virginia.  I was in the hospital when it hit.  Then 2013, 2014, twice in 2016.

The first time in 2016 was May.  Tumor in the lung showed up.  Surgery, they got good margins, no chemo.  Then again in November.  I started feeling like I couldn't breath because of bronchitis or walking pneumonia.  Finally went to the ER.  Boy was I wrong.  Surgery was scheduled right before Christmas.  I thought they would just go in remove the tumors, but no, all they could do was drain the lung and debulk the tumors.  They are in my left lung, on the sack of the heart, in the lymph nodes, on the Vena Cava, and aorta.  Surgery really isn't an option anymore.

So yeah, I am tired.  I am tired of the trips to the doctor's office and his smiling face, telling me how great I am doing even though they really can't do anything for the cancer other than try to keep it from spreading, which really has been proven fruitless.  Eight months on a chemo and it spreads.  Since January 2017 I have been on three different chemo drugs.

I am tired of the blood draws, the CT scans, waiting for the reports.  I am tired of them trying to make everything sound so up.  Just be straight with me.  Did it spread?  Yes or no?  What is the next drug?  Just tell me.

Right now they are trying to give me quality of life rather than quantity.

The chemo I am on, Votrient, is the easiest chemo I've been on.  So far my side effects have been nausea, some fatigue, some shortness of breath, and my hair changing from dark brown to varying shades of silver and grey.  Salt and pepper.

I am tired of having to remember to take poison every morning.  800 mg of it.  Yeah, my breakfast is 800 mg of Votrient and water.  I have to wait about 15 minutes before I can have my first cup of coffee.

I am tired of feeling weak.  The Yolandis that I was on caused major breathing issues, so my physical activity was limited.  Kind of hard to want to do something physical when you can't breath.  Now on the Votrient the breathing issues are still there, but improved 100%.  I need to start working out to get into better shape, but I need motivation.

I am tired of feeling like I am a drain on my family and friends.

I am tired of worrying about co payments, taking meds, fighting the bills that were supposed to be covered.  Tired of worrying about gap insurance now I am on Medicare.

Did you know that insurance companies can pick and choose the areas (counties) they want to cover?  They don't have to offer gap insurance to everyone?  If I were 65 I'd have plans available.  Since I am not there is only one plan for people under 65 on disability, and they don't cover my area.  Medicaid is out because they said I am $200 over their cap on qualifying.  So now I have the 20% to cover that Medicare doesn't.  Grateful they cover 80% of the doctor's and hospital, but, yeah, I'm tired of worrying about that.

I am so tired of needles and blood draws, and reading then rereading the reports.

I am tired of feeling like if I show any weakness people will think less of me.  I am tired of feeling like I whine.

My daughter Jasmine, my dog Sasha, me, my dog Bailey

I am tired of the isolation.  I feel alone.  The days are all filled with the same thing.  I try to motivate, but it is really hard some days.  Yes, there are days I just go back to bed.  There are some days that I don't want to get up, but my dogs remind me that they are my responsibility and I have to take care of them because they love me.

Don't get me wrong, I don't wallow in pity.  I am working on socializing more.  I volunteer twice a week at Mary Washington.  One day for three hours we sew cough pillows for patients.  And the other day I volunteer I work in the Gift Shop.  I also go to "Meet up" things, there is a group of single people 50 and over that meet up and I try to go once a month.  I need to make more friends locally to have coffee with and talk to.  Like I said, I am working on it.

I am so tired of feeling like I am in white water rapids being rushed down the river with no hope.

How do I do it?  I don't know.  I journal.  Everyday.  Even if all I do is write down that I feel like crap.  I try to write something down every day to get it out.

I write this blog, yes, I don't write often, and it may not get read much, but with it I am trying to show my inner feelings and frustrations, so it is an outlet.  I actually end up feeling better by the time it is published.

How do I do it?  In my heart I know that my family and friends are there.

An update on the Lowe's job.  I emailed my supervisor about my concerns when it came to the customer service, and my inability to lift the 5 gallon buckets, and my limit to 15 hours a week.  Along with the concern of being scheduled three 8 hour days in a row.  (Down stocking and fronting on a four hour shift exhausted me, and I was honest with them in the interview I am not in shape, and I need to work on stamina).  After not hearing any response for five days, I figured that maybe I should work on getting in better shape before I try working there.  So I resigned.  I really didn't feel comfortable my concerns were not address.

I haven't given up looking for a part time job either.  There is something out there that can help me financially, physically and yes, mentally.

Thanks for reading this, I am in a better head space now.  Time to go have some breakfast and vacuum.

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.

Face Your Fears

I know I know, it is easier said than done, but at least try!

To be honest, just about everything I have done on my "adventures" (including my day to day not so high pressure life - seriously, my stress factor is dust and dog hair and keeping the house looking clean).

It has been mentioned from time to time (OKAY, I harp on occasions) but it is something that needs to be revisited.

Let me explain something first.  To me there are fears and there are phobias.  A phobia to me is something that can literally paralyze you.  Okay, so they can be the same.  Just thinking about some of mine and how they affect me.  But a fear can be not doing something because you don't know how, or are afraid of looking foolish, or meeting new people.

When I decided to jump out of a perfectly good plane, for example.  There was fear.  No doubt about it.  But not so much that it paralyzed me.  So I  jumped.  Guess what?  It was amazing.

I have issues with meeting new people too. I am uncomfortable.  Yes, I have trust issues.  I feel awkward, out of my element.  What is my element?  My home.  My Kindle. The library.  So going and doing new things requires me to actually push myself.   I am a great actress.  Most people say I look like I am comfortable with new folk.  I try.

Trust me, I can talk myself out of doing something very easily, and stay in my "safe" bubble.

That brings me to phobias.  Yes, you can overcome them, and work on it.  Depending on what it is, you may be able to go it alone, or get a little help from your friends.

For example.  Spiders.  I hate, hate, hate, hate them.  Bugs too for the record (some more than others).  When you live on your own, you have to learn to deal with them.  I am not totally fine with spiders, but now I can smash them to smithereens with something.  Or spray the insecticide on them.  I don't like it, and my stomach flops after I am done, even can have the shakes, but I am not as bad as before.  Trust me, there are some that I will not deal with and run, screaming like a little girl to get a way from, and find someone else to kill the spider or bug.  Just looking at pictures of them creeps me out so bad I get nauseated.

Haven conquered the fear, but I have gotten better.

Now onto the big one.  One that I can panic from.  I am terrified of water above my head.  I mean, when I first started this venture, full tilt panic.  But I like the water, it is peaceful when not storming - so go figure.

I started facing the water fear four years ago?  I made a dream trip to Bali.  I always wanted to scuba dive somewhere the water is clear.  I can swim underwater, so of, go figure.  I never said this made any sort of logical sense.  My swimming ability has been drastically reduced since they removed the left hamstring.  I never realized how useful the hamstring was in swimming until I tried.  OH, yeah, I have been afraid of the water since I was around 10.  Nearly drown.  Yes, after that I learned to swim, but it didn't help much.

The instructor was really understanding.  I wouldn't call what we did diving, but I got into the clear ocean, when down a few feet, came up, went down a few more feet, came up, did that probably five or six times before panic starting edging in.  The water being so clear was a help I believe.

I also dislike smaller boats.  I am afraid they will flip, and I'll be in deep water that is murky and can't see in.  Paddle boats aren't too bad, they seem harder to flip over.  Canoes on the other hand. Well....

One of the times I was visiting New Orleans, Jim, Liz, and I went to City Park.  They didn't have any kayaks, but they had canoes.  Jim and I had one, Liz I believe got the last kayak.

I had a death grip on the sides of the canoe.  But gradually I relaxed, and started taking pictures.  Oh, there were a couple times I grabbed back on the boat with that death grip, but I made it.

Today I got into a kayak.  They had an intro to kayaking for seniors, so I signed up for it.  I made myself get up at 06:00 to go.  Took care of the dogs, made coffee, grabbed a sandwich for a snack.  I was set.  Got into the car, my mind started coming up with all the reasons why I SHOULDN'T do this.  All I could think of was the kayak flipping over and me being stuck underwater.  OR just flipping it and being embarrassed.

Gritting my teeth, I  drove to Curtis Lake Park.  There were a total of seven people there for the class, everyone else had been in a kayak before, on vacation or with rentals.  They wanted a better idea of the right way to kayak.

They had us all introduce ourselves and explain why we had taken the class.  It was my turn. "Hi, I am Jean Lee, and I am here to face one of my fears. I have never been in a kayak before."

To say getting in was a bit awkward puts it very politely, but I got in and didn't flip it.

The one volunteer could tell I was a bit apprehensive, and she talked me through a couple of things.  I finally relaxed (still had a death grip on the paddle) but I was able to stop and just be.  Whenever I got antsy, I stopped, breathed and was just there.

Rowing got a bit frustrating for me.  I rowed like a drunken sailor.  After awhile, I was doing it decently, and could feel the difference in the kayak movement, but as soon as I realized I was rowing correctly, I lost the rhythm.

Would I do it again?  Yes.  Would I still be afraid?  Yes.  There is a trip they are doing Tuesday from Crows Nest, and if I didn't have to get my stuff together and packed for Adult Summer Camp, I'd go.  Yes, I pack and unpack just so I can Tetris everything into the smallest space possible.

Come to think of it, I will be doing this again at Adult Summer Camp.  There is even beginner rapids.

What fear have you faced?  It doesn't have to be a big huge effort.  Sometimes, just the act of a person walking out the front door is facing a fear.  For some females, walking out the door with no makeup on is terrifying.

So what little fear have you faced today.

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?

The Adventures of Yondelis, the sea sponge chemo

Actually I finished cycle two.  The first cycle I thought I felt so crappy because of being exhausted.  Nope.  This time it kicked my ass.

I got hooked up on Thursday Oct.5, went home with my buddy the pump, felt ok, Friday felt normal.  Went about my day, got the pump taken off.

Got up Saturday, and felt a bit yucky, but wanted to check out Toastmasters.  You know push the comfort zone thing.  I didn't make it through the whole thing.

About 15 minutes after I got there, I started feeling dizzy, and nausea kicked in hard.  Went and sat in the refreshment room, downed some Zofran, still felt like crap.  As soon as I felt ok enough to drive home, I did.

I spent three day in bed.  If it weren't for the dogs, I would have just stayed in bed.  I would get up let them out, back to bed, get up feed them, back to bed.  And I had to really push myself to do that.  My body was beyond exhausted.  I was sipping water which just nauseated me.

When I did get up, I to let the girls out, I'd open a can of soup, drain the broth into a cup, warm it, sip it, and leave the cup and can on the counter.  Seriously disgusting for me. 

I'd wake up and say I have to get up; my body said like hell.  I'd fall back to sleep, just to be on the hamster wheel.  I finally felt ok enough to get to CVS and get some ginger ale (craving it like crazy), pedalyte, and Gatorade.  I was getting dehydrated. 

Finally able to keep fluids down, I started sipping as much as I could at one time.  Trying to increase it a little every time I took a couple of drinks.

I saw my doctor yesterday, we are going to stay the course with it.  After the third cycle, we'll see if the sarcomas are being kept in check or if they are spreading.  If they are in check, we will reduce the dose a bit to try to ease the side effects.

The joy I have to look forward to Oct. 26 or is it the 27th?

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.

Being Termnal or Having an Expiration Date

Many people are uncomfortable with the fact I am open with the fact I have an expiration date.  That is unfortunate.  They seem to miss the in-between.

What do I mean in-between?  The in-between time from finding out you are going to die with an approximate time frame to the point where you actually check out of this life.

I guess people don't know what to expect.  I think they seem to expect me to be weak, and feeble.   When they see me, they see someone who looks healthy.  Ok, well maybe a bit anorexic (down to 105 pounds) yeah I do have some dark circles under my eyes.

Sometimes I get the feeling they want to ask questions, but don't want to offend or are afraid of the answers.

Personally I wish people would ask questions.  Questions make you think, and if you think you can solve things.

Don't Wait on Your Bucket List

Currently I am sitting in Roma!  I can't believe it.  I made it to a country I always wanted to visit, but never thought possible.  Better yet my son Jim and daughter Jasmine were with me.  So far it has been the trip of a lifetime!

Jim and Jasmine at IAD

We left Dulles on the 28th at 9 PM.  (Yes Jasmine and I got there a "little early"  OK, OK, a lot early, I am paranoid) we landing in Paris around 10:40 the 29th, sat around the Pairs airport for a bit after walking back and forth between Air France areas trying to find where the gate was for the second leg of the trip (booked that little flight separate)  The second being Roma (Rome - The Italians spell it Roma, and pronounce it like it looks, why do we change it?)

We are staying at a Airbnb.  Cute little place, right near a bus line and a tram.  We have been taking the public transit.

Which while riding the Metro here, got me to thinking, WHY do we always put off things we would like to do?  Ok, maybe a trip like this needs to be saved for but in the mean time, why not go exploring at home?  In your city or in your state?  Do something that you wouldn't normally do.  Why wait for the simple little things?

Hallway going into the Sistine Chapel

What am I talking about?  Everywhere has local churches that are beautiful.  Full of stained glass, older churches with unique architecture.  You don't have to be a part of that particular religion to appreciate the craftsmanship that went into designing and building the church, or the beauty of the art of the glass, or statues.  Seriously, if *I* can visit the Vatican, than you can explore your local old churches.

For the record, this hallway to me is more impressive than the Chapel.  Don't get me wrong the Chapel is beautiful, but could you imagine being the only one in this hallway walking down it?  Pictures do not do it justice.

Gianni and Ceasare - amazing chef and sous. 

Then we did something anyone can do ANYWHERE!  We took a cooking class with an Italian Chef.  Gianni and Ceasare - amazing chef and sous.

It was so much fun, and the food turned out amazing.  So simple - we made sauce from TOMATOS, and two types of pasta, egg noodles and Cavatelli.

So do you get where I am going with this?  GET OUT THERE AND DO SOMETHING.  DON'T WAIT FOR SOMEDAY!!  Find little things and do them, they will build an incredible number of memories.

One heck of a first day!!  I don't count Tuesday because we got in so late and were exhausted but we found a great neighborhood restaurant thanks to our host!  We were EXHAUSTED.

Our second day?  We visited Equiazione.  Basically it is a sanctuary for horses.  Every horse there has a story, some sadder than others.  We spent the day with Butteros (Italian Cowboys in essence). We took the train to Castel Gandolfo Train Station, where Matteo picked us up.  We ventured on to a local family run organic farm and picked tomatoes for the sauce Matteo made up for lunch.  We stopped a small cheese maker and got some sheep's milk cheese, first salted, and some fabulous ricotta.   Another stop for coffee and a pastry made with wild strawberries.

The on to Equiazione, to learn about the way they care for horses and the philosophy behind it.  It isn't your standard show up the horse comes out of the stable saddled and you go for a ride.  Nope, they talk to you find out your level explain their way of doing things, homeopathic and organic.  You meet the horses.  It was very educational.

Again, where am I going with this?  DO THE SMALL LITTLE THINGS WHERE YOU LIVE!!  Build that book of memories.  To be honest I would have never thought of going horseback riding at home.  I read the description and thought Jasmine would enjoy the experience, as much as I would, I think she enjoyed it more.

Seriously.  Please do not wait until you are in my position.  I spent too much time worrying about things that really didn't matter.  Learn from my mistakes.  I made so many of them worrying and trying to do things that didn't matter.  I wasted so much of my life, so much of the time I could have been spending building memories with my children.  I am not saying go be irresponsible.  But do something, if funds are tight, go to a park you have never visited and picnic.  Walk through it.  Visit a local beach, visit and volunteer somewhere.  There are so many amazing experiences!  Don't waste precious time!

Take your family and go do simple little things.  Do things by yourself.  

Give yourself time to enjoy life.  Only you can give yourself permission to do that.  You need someone to give you permission, ok, I give it to you.

Just another ranch hand

TOMATOS!

Jasmine really enjoyed herself

Jim took a nap

Hot peppers on the farm

It is funny, cancer for me over the years is just a part of life. I always knew that cancer would be what will end my life. I have been beating the odds since 2003. I am good with my mortality. Came to terms with that years and years ago.

June 29th my doctor and I had a talk. The antibody chemo (first person in the area to get it) seemed to keep the sarcoma on the upper aorta in check, and the one on the lung. But, I grew a new tumor in the colon, and surgery isn't an option.

My reaction was, "well, damn, that means I am still stuck with all that excess skin on my stomach!!"  I saw my surgeon when the tumor came up on the CT scan, and told him if he and the oncologist agree on surgery, he better damn well do something about the excess skin, because that scar that runs down the middle of my body from the sternum to the pelvic bone allows it to sag on two side.  (I have a multi pack that is saggy).

We will continued the Lavutro treatment (antibody)until the week of September 12. Then we go to the Yondelis (trabectedin) chemo. Another new one!! It is made from the sea sponge.

I asked about longevity  (I think I told you all this, but I am not sure). Optimistically 12 to 18 months. We are doing treatments that are less aggressive. I want to enjoy life, and have no desire to be hospitalized every other week for blood count.

Like I said, I am good with it. I won't give up. But accept the strong possibility. The thing I have the hardest time with? Leaving my children. Yes they are adults, but I would prefer them not having to deal with it.

I actually feel guilty because I don't want them grieving or feeling sad because I am gone.  I know many people think I am being a bit silly or a worry wart. But in reality, what one thing that makes life mean the most to me is seeing my children grow as humans.  Seeing them happy. 

The other is random acts of kindness, but you have to do them anonymously.  Like the other day, I treated myself to dinner out.  Local greasy spoon.  Two fresh faced Marines, you can just tell they were fresh out of training, and there was an older couple.  Told the waitress to give me their checks, and tell them someone said pay it forward if and when they can.  Do not tell them who.  I finished my liver and onions (yes, I like it, but lately I crave it) and the looks of astonishment on the faces were priceless.  Or sending items or funds to rescues anonymously.  Or at the grocery store, putting money toward someone's groceries, or walking into the little food band and dropping off bags, then walking out without a word.  I like doing that.  I like seeing the faces (when I can) of people who are astounded that kindness still exists in this world. God knows we humans need to learn to be nicer to one another.

But in the mean time, I need to win the lottery so I can do lots of random acts of helping those less fortunate, camp across the USA, and get some bucket list things done. But I want my children to go with me and build memories.

Stepping Out of Your Comfort Zone

I think I explained before that I am an introvert with extrovert tendencies.  Well, I pretend to have extrovert tendencies.

To be honest, lots of things make me nervous as hell.  Mainly has to do with people, going into new situations, and the such.  I am terrified of looking like an imbecile.   Seriously, don't laugh.

Working out I am self conscious as hell.  No, it isn't a body image thing, and yes I started working out (maybe strengthening my body will help defer the expiration).  I work through my exercises thinking, well not thinking really, I try to block everyone and everything out.  Am I doing this right?  Of course I am.  But no one showed me, well I followed the pictures on the machine.

Oh man, when I go into a setting having to deal with a group of people, yeah, I just want to turn around and leave.  Again, I don't like feeling like an imbecile.  Even if I have a good idea of whatever it is, I get antsy.  It is worse when I am rusty on it.  Shit, then I think why the hell did I sign up for this in the first place.

You are thinking something like this "But she isn't afraid of cancer and dying?"  To answer you, no I am not.  I know my body, the signals, how it reacts.  Death is just a transition.  But dealing with new people on a one to one, or going into a group to deal with them alone?  I am quaking in my boots.

When I went to Bali a few years ago.  My first trip out of the country, alone.  Didn't bother me in the least.  I have no idea why.  Camping with my dogs, no problem.  I function very well independently.  Public stuff, not so much.

Now what brought this up again?  The following video.  I need to be more like that young man.  Talk about stepping out of your comfort zone and facing your fears!!  Bear with me and watch.  Once you do, you will understand.

After you watch the video, shut off the phone, computer, the whatever, and go outside, live life, laugh and maybe face one of your fears.  After chemo, I am going to.

This young man faces his fears  Click the link to see.  He is my new hero.

I love my friends and family.  I really do.  It touches my heart more than I can express how they try to find treatments that will keep me around.  They really want me to live to be an old crotchety lady.

Been doing some thinking, and I am going to call Doc Monday and tell him to see what it will take to get my on the Yolandis.  It is a once a month 24 hour chemo - and it is derived from the sea sponge, natural chemo!

He would like to keep me on Lavutro for another three months, but, I don't know.  The more I think about it, I mean, the tumor in the colon developed while I was on it.  I don't think that bodes well.

The flip side to this is, as long as I can afford it, once I do the chemo, the girls (Sasha and Bailey) and I can hit the road for the rest of the month if I wanted to.  Three to three and a half weeks on the road.  I'd have to get back once a month.  Seriously sounds better than my schedule now.  Even though the chemo schedule I was on a couple of years ago seriously blew chunks.  Both literally and figuratively.

Right now it is Thursday, Thursday, off, Thursday, Thursday, off.  So during a month 3 out of four Thursdays I am getting chemo.  It is akward too.

Once a month is much better.

The Terminal Journey begins

I said it before, in my gut/heart I knew that cancer was going to be my end.  It is just weird when the doctor actually confirms your gut feeling.

Each time I was diagnosed I had that feeling, you know that one, the oh shit gut feeling.  It is either my sixth sense or I have gotten really good at reading the body language and tone of voice of my doctors.  

Well, I finally got to talk with my daughter, and since my son and sisters already were told, I was going to send messages through Facebook to my friends, which can get a bit over whelming.  I could have sent a mass message, but that bugs the crap out of me, because even if you tell people don't respond to it they do and everyone get the response and it just ends up getting people upset.

So I posted on FB.  I think people are making a mountain out of a mole hill. I mean, I have been beating the odds since 2003. In reality it was bound to get me. 

My son told me in reality, other people's reality, I did drop a mountain on them.  He is right.  

The logic behind my thought is I have had a very long while to accept and adjust to my mortality.  In 2003 I was resuscitated, and in reality I was brought back from the dead.  That kind of gives you the realization your life can and will end, eventually.

I feel uncomfortable with people.  Always have.  I am an introvert with extrovert tendencies.  Well there are a few I am comfortable with.  Part of it is I have foot in mouth issues.  I open my mouth and sometimes what comes out is not appropriate (language), or shocking, or morbid, you get the idea.

Add to that I have body issues.  Not really the body per say, but when I look in the mirror, I see how cancer has aged me.  The wrinkles have really compounded over the years.  In 2011 I had some but now, they are deeper.  More prominent.  I know it is vain, but I don't feel that old.

Cancer ages you.  No matter what anyone says.  It ages your body, your face, your viewpoint.  Your attitude.  Maybe that is why I am the way I am.  I used to have patience with games people play.  I don't anymore.  Just tell me the truth and be done with it.  Don't sugar coat it, just say it.

That being said, having terminal cancer and looking for a job blows fucking chunks.  I hate it.  I shouldn't say anything about the cancer because they can find reasons not to hire you that have nothing to do with "cancer".  You are over qualified, under qualified, they promoted from within because the person has experience.  And NEVER tell them you are terminal.

No I haven't done that.  Legally, I don't have to.  My health is none of their business.  I need to live, and it takes money to keep a roof over your head, and pay for food, not to mention that life saving health insurance.

I need to keep health insurance.  Right now I have it through COBRA.  Thanks to my former employer, I can keep it for another 12 months.  I have been looking for a job for a year now.  Sucks.  I know, apply for disability.  I did, but even if they rush it, I have at least 6 months to wait for a decision.  OH, COBRA was cheaper than the health care act.

There are so many emotions running through me right now it is crazy.  At this moment in time I feel crazy.  I am angry, touched, depressed, happy, no not angry PISSED off, there are times I want to just jump down someone's throat, but that wouldn't be right.  Other times I can look at things and just smile and shake my head.  

Right now I just want to scream at some people.  What the fuck is wrong with you?  Stop whining about that damn purse you can't afford.  Stop whining about things not going your way.  Well shit head, welcome to life.  Some days it fucking sucks.  There are so many people out there that don't have a roof over their head, or food on the table - you are whining because things didn't go your way, oh boo hoo.  Put on your big kid pants and suck it up buttercup.  Start looking at the good things in your life and be grateful! Do you have people who care?  Someone that loves you?  Roof over your head?  Food?  Job? Ability to get from point A to point B?  Then be grateful, and change things you are not happy about.  I am going to die, and I can't stop it, I can fight it as long as possible, but I can't stop it.  I am going to die before my time, so fuck that whiney, pussy ass shit and get off you ass and start living.  Stop missing life because you are so concerned about shit you don't have.

Yeah, I am angry.  Very angry.  I want a job, a good paying job with health insurance.  I don't want to become a burden to my children, even though my daughter kept telling me don't go to hospice when the times comes, she'll take care of me.  I don't want to die on my children.  Fuck, I don't want to die, I want to work, stay independent and laugh, and complain once in awhile.  I want to travel, alone and with my children.  I want to be able to travel with my dogs.  There is so much in life I want to do, and I will do as much as I can.  I want my children to look back and have some great memories of their mom.  They may be adults, but they are still my children.

I am angry, very angry.  I am also sad.  I am in no hurry to leave this plane.   There is so much to do, see and experience.  I don't want to leave my children.  I don't want them to experience the pain and loss.  Even though I know it is a part of life, and they have lost their grand parents and know loss.  I don't want to be that pain.  I don't want to hurt my children.

Shit, I honestly don't want to hurt anyone!!

I want to cry.  I never do.  I feel a tear or two in the eyes, and the sense of wanting to cry but then it passes.  Perhaps it is because I understand the reality of it all.  

There is house work to do, and laundry.  The dogs to walk and the car needs a bath.  I don't feel like doing any of it.  Now the depression is starting to roll in.  If you haven't realized it, the emotions have rolled through.

I think I am going to stop for now.  I will try to be a better blogger.  I am going to try to document the Terminal Journey through the blog and artwork.  Mixed media, pictures. 

Go hug someone, and do something you enjoy.  Remember - We are all stories in the end, just make it a good one. ~ The Doctor