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.

Living with an Expiration Date

In reality, we all live with one.  The difference?  I have an idea of when, and what will cause my ending.

Most days, I don't think about it.  Honestly.  It doesn't accomplish anything.  Neither does getting all depressed, crying and railing against it.  Doesn't help.  Don't get me wrong, I want to live, and I have said it before, I will fight.

It can be a bit frustrating in reality.  Seriously, what does terminal look like?  I think many people expect to see me weak, frail, wobbly, can't do things.  For now that isn't the way I am.

I am thin.  Last time I weighed myself I was 104 pounds.  Less than when I graduated high school.  I am not weak, well, I am working on strength.  Yes, I get winded.  Side effect of the chemo, and having only 1 1/3 lungs, along with a tumor sitting on the lung.  Working on the lung capacity too.

My oncologist told me to do things I want to.  To live.  He is all for me working out, as long as I don't over do, and mind what my body tells.  As long as I have good counts, I can do things.  When the blood count crashes, well that is when I go into hiding, or the hospital.

So for as long as I can, I will do as much as I can.  Including work.  Got to keep the roof over the head, utilities paid, and fund those bucket list things. (Right now I am smiling and laughing, I do have one long list.)

Many think I am in denial when they hear me talk, I am not.  I know that as time goes on, I will not be able to do as I do now.  I know my body will betray me, will become weaker (one reason I want to get in much better shape, the logic is that the better the shape I am in, the longer I put off the betrayal - even if it isn't true don't tell me.  This is an illusion I need.)

Yes, I need an illusion.  I think all people do.  The difference is I realize that I know it is one, but there is that slim chance; but I think that may be with all illusions.  I will have to ponder that.

Please don't get me wrong.  I know I need help.  But I need to feel independent now.  As time goes on, I will need more help.  Help with cooking, house work, driving places.  But for now, I need my independence.

Walk with me while I am independent, encourage me.  Travel with me.  But if I need that quiet alone time, realize it has nothing to do with anyone, or this journey I am on.  I am that introvert that needs quiet and alone time to recharge.

Now go seize the day.

An Attempt to Explain Me

I am an introvert with extroverted tendencies.  I know that is a real oxymoron.  But it is the truth.

To be honest, I have always been that way.   I remember being a kid and wanting to be the one to be picked first for teams or special projects like speeches at assemblies.  While I wanted to be picked, inside I was terrified to be picked.  I was the one that would climb trees and hide from people.  The solitude and beauty of being high in a tree always brought me peace.

When I was honest with myself, I really didn't want to be the one picked.  But when I was I would suck it up and pretend.  Acting like I wasn't scared or nervous became second nature to me.  (Please don't jump to conclusions like I am afraid of the cancer and outcome.  That is the one thing I am not frightened of.)

I learned to control that introvert part of myself.  Became an adult, I was in such a hurry to grow up!  What was I thinking?  Job interviews, those horrified me.  Now phone interviews terrify me.  I'd rather see who I was talking to so I can read the body language.

When I started the shelter, I never thought about becoming someone in the public eye.  It wouldn't have happened if I did.  I saw a need and wanted to make a difference.  I remember thinking I could do it all on my own.  Educate people, work a full time job, fund raise, take care of the animals.  I had my shining armor on and rode my white charger, I was going to make a difference, all on my own and not in the spotlight.

I soon found out I was wrong.  I ended up doing public education, doing interviews with the media, needing help with the shelter, actually looking for volunteers, facing my introvert fears, and swallowing pride, I was asking, sometimes begging for help.  My pride was swallowed, my armor dented and dull, my white charger ran off.

So many things started happening that I couldn't control.  Oh, yeah, I do have a bit of an issue with control and ownership issues.

In 2003/2004 I would never have made it mentally, the shelter wouldn't have made it financially (neither would I) if it were not for people who were willing to help.  It was a difficult time going through the chemo, radiation and surgeries.  Learning to walk again was a trip.  Well if you have to go to the bathroom and you are on the first floor - the bathroom on the second, you find a way to get up those stairs. Amazing what having to pee can do.

Fast forward to now.  I am still introverted.  I actually do have to gather myself to walk into the gym.  (Yes I started working out, doctor encouraged too.  I figured the stronger I make my body, the better chances of a longer life, I need a trainer, :D )

There have been so many things going on that I can't control.  Contract not being rebid, so I lost the job I had; and as much as I would complain about it, I liked it.  The cancer coming back.  It tends to bring out the introvert so I can sit in the quiet to think and look for a job.

One of the reasons I like camping is the fact during the week it is quiet, I am removed from everything, all I have to do is enjoy nature, cook, play with the girls.  I am removed from the house and the feeling like I should be doing this that or the other thing.  I am alone.  It is hard to explain.  It is peaceful, and centers me.

Now I am still that prideful woman.  I want to do everything on my own.  I want to show the world I can do it.  It is very hard, just about impossible to ask for help.  But that is what I am doing how.

Help me spread my story.  Help me educate people about what it is like for a regular, working stiff that lost their job deal with being terminal; having an expiration date.  Get people thinking.  Help me educate.  Help me help others with cancer that there is more than just the diagnosis and prognosis.  Help me let care givers know that we with cancer know it is extremely hard on them.  Help me help friends and families know that  we know it is difficult for them, they don't know what to do.  Just don't disappear.  Help me help other cancer patients with my type of pride issues to realize they can ask for help.

I need my family and friends.  I need help.  What type of help?  That depends.  Sometimes I just need to talk and work things out.  Sometimes I just need someone to sit and have a glass or two of wine with me and laugh.  Sometimes I need heavy things moved.  (I do ask) Sometimes I need to escape my reality.  I am not the best communicator (isn't that funny since I spent the last 8 years in communication)   I hate the phone, and to be honest over the past year of job hunting, the computer isn't too popular with me, mainly because the amount of time spent researching, well that is my hypothesis.  I know I can't do this on my own.  But please understand I do need the quiet time to recharge and reflect.

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