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?

I wish I had Breast Cancer instead, said no sane person ever

Well, that was your first mistake.  You thought I was sane.

Why would I say something awful like that?  Let me explain before everyone gets their panties in a bunch and stuck.

Breast cancer is the most common form of cancer in the United States, with approximately 249,000 women diagnosed last year. Sarcomas?  Approximatly12,300.   That actually is all soft tissue cancers.  That is a big difference.  That over 230,000 cases means more research is done and new treatments come out regularly.  There is more fund raising, more financial help (if you dig and look), more options available for treatment.  A better chance for survival.  This morning on Good Morning America they did a bit and the numbers of survival are higher than ever.

Actually this is rather exciting, there is a new treatment for metastatic breast cancer, just approved!https://www.upi.com/Health_News/2017/09/29/FDA-approves-new-treatment-for-metastatic-breast-cancers/7571506697863/

They are coming out with new treatments, trials, and ways of detecting it, which is amazing.  There is funding to help stop it.  To help those with it.

Sarcomas?  Not so much.  Look it is a game of numbers.  Sarcomas are rare, and of the 12,300 there are 50 typed.  Some they can't identify, so they are lumped together as "unidentifiable".  Not much research done, although there are some out there that are swimming against the tide.

"If caught early, sarcomas can be treated effectively with surgery. However, if the disease spreads, or metastasizes, treatment with chemotherapy does relatively little to slow disease progression or improve survival. The median survival time after diagnosis of advanced disease is 12 to 16 months. In 2015, 12,000 people were diagnosed with soft-tissue sarcomas and 5,000 died of the disease, according to the American Cancer Society." Columbia University Medical Center

41% die.  I am going to die.

Last year, Latruvo was fast-tracked through the FDA.  It is the newest treatment.  It was a huge break through in decades.  You want to know what they got excited about?  Not that it can end the cancer, but perhaps extend the life by a year.    Here is the article on it with more information:  https://www.news-medical.net/news/20160721/Adding-new-monoclonal-antibody-to-chemotherapy-improves-survival-in-soft-tissue-sarcoma-patients.aspx

I can't find any references to any break troughs from prior to that.  In reality, if it is live or die, a year is good, as long as the year is good quality.

What is the point?  I have cancer, it is called Sarcoma, so do many others.  The point?  I wish more people would acknowledge the rarer cancers.  More research would be done.  More help available for those with Sarcomas. 

It won't happen in my lifetime, but soon I hope.

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.

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

The story

My sister asked to write my story.  It isn’t an easy straight forward story – there are the major happenings, then the little stories that layer in between that makes the larger event bearable.  I will try; but in trying stories of love and support, will be there between the lines. They too are important.  I am so grateful to those people who have helped and continue to help me.  I apologize for not detailing your stories.  I am limited to 7500 characters.

You have cancer. That is something no one wants to hear one time.  I have been told that six times.  Sarcoma, rare.  Lucky me. The head of the Pathology Department at the Mayo Clinic – asked to keep my biopsy slides to use in his teaching.  Is it weird that made me happy?  (My cells are helping to teach!) 

I hate January.  Seriously, I do.  It seems that every time I was “officially” told I had cancer in January.  Since January 2003 I have been beating the odds.  At the Cleveland Clinic I was told that the cancer could kill me, and if I survived, there was a 1 in 500 chance of it returning.  I laughed and said, “Well, that means my chances of it returning are better than winning the lottery!”.  Let me explain, I have a warped sense of humor, always have.  If it has to do with me it is open game to me.  If you can’t laugh at yourself, who can you laugh at?  I actually have laughed plenty during this entire venture with cancer. 

Since January 2003 I have lost my left hamstring, right latissimus muscle, lower two thirds of the right lung, half my liver, a third of the pancreas, duodenum, gall bladder, part of the right pectoral muscle, a scoop of the right quad, several feet of lower intestine, a couple feet of small intestine, part of my stomach, and had several skin grafts (By the way when they fail you smell like a corpse.)

January 2003 my journey began at the Cleveland Clinic.  Biopsies, the doctor “officially” telling me I had cancer. 

I went through the MAID chemo and radiation.  Very difficult chemo.  Chemo brain is very real.

In 2008, I was offered a job in Virginia, as a contractor working on a Marine Base.  I passed the magic five-year mark, and time for change.  I turned over the shelter I founded to a wonderful group of people, and moved.  (For the record, I really loved my job.  The work was meh, but the people were awesome!  Loved working with Marines. They have warped sense of humors too.

Divorce in 2010, cancer returned in 2011.  Right lung, lower and upper intestine and the right pectoral muscle. I now have a basis for the worst pain you have ever felt in your life.  It is either having your abdomen sliced open from under your rib cage to the pelvic bone, or having your sternum cracked open.  Either way, it rates a 10.

2013 -  Whipple surgery was done. A Whipple is a surgery that entailed removing the following:  part of  my stomach, duodenum, part of the pancreas, part of the liver, the gall bladder, and several feet of intestine. Basically, they rearranged my digestive system. I always have Zofran because eating nauseates me.

2014 -  Right thigh. Attached to the quad. This one was actually one I laugh about.  No chemo this time – the basis for this decision is the fact it nearly killed me last time.  A day surgery, they went in scooped the tumor out of the leg, discharged by noon then I went to lunch with my son at a local Indian restaurant. Surgery was a Tuesday, they told me I had to take one day off work. I took Wednesday off, and I was bored.  I was back at work on Thursday.

March 2016.  The left lung, my GOOD lung. It was small. No chemo if Doc got good margins. Doc got good margins. I had surgery on a Monday. I took Monday, Tuesday off and you back to work full time Wednesday.

I actually thought that the worst of 2016 was done.  It was a bad year.  During the spring the company I worked for told us that they were not going to bid the contract they had with the Marine base I worked on.   I started looking for a job.  The contract ended at the end of July.  Job hunting started in earnest.  I picked up a couple of small part time jobs.  I need a job with good health insurance.  Right now, I am unemployed; but I am keeping the COBRA insurance paid for!  COBRA was cheaper than Obama Care, and better coverage!

November 2016, I started feeling like an elephant was sitting on my chest. December, I was in the ER, hospitalized, they thought they saw fluid in the lung they tried to drain it. It didn’t work. Surgery was scheduled for December 18. They  discovered pockets of fluid on the lung and surrounding the heart hiding tumors. They removed the fluid and debulked the tumors.

January 2017, a Saturday at 8:00 AM. I got a call from the doctor with the results. The cancer was back, and it was in fatty tissue surrounding the heart, actually it is on the upper aorta, and lymph nodes. My oncologist got the insurance company to approve the new anti-body treatment that was rushed through.  I am the first one in the area to get the treatment.  It was rushed through FDA in October of 2016.  February, I started LARTRUVO and doxorubisin.  Weird hair loss, fatigue, nausea, shortness of breath, side effects. 

I finished the original six cycles.  I had a PET scan done, the cancer on the upper aorta and lung seem to be stable.  However, a new tumor developed in the colon, while going through chemo.

Surgery isn’t an option unless it becomes a blockage.  It is too dangerous.  I’ll keep doing the Lartruvo for the next three months, along with CT scans to see how the colon tumor reacts.  If there is no reaction or growth, we will try the Yolandis.  Yolandis is derived from the sea sponge.  I have a feeling that Doc is going to have to convince the insurance company to pay for it.

June 29th was the infamous talk.  Optimistically my life span is expected to be 12 to 18 months.  My doctors (oncologist and surgeon) are encouraging my to do my bucket list.  (Yeah, that cost money and I have to pay for my insurance, and I am still unemployed – not for lack of trying.  Yes, I am still looking for a job.)

I always knew that cancer would be my end.  Just not ready for it.  Going to keep fighting.  But as the doctor and I talked, we both came to the conclusion I will fight, but I do not want to do the really harsh chemotherapies.  The quality of life is an issue for me.  Back and forth to the hospital.  Feeling half dead, not wanting to enjoy the simply joy of sitting on the deck.  I’ll fight, but quality of life really is important.

I want to see friends, make memories with my two children.  Get some bucket list things done – things drive across the USA and camp at the National Parks with my girls (dogs) in a 4 door Jeep Willey (my 2004 Malibu with 160,000 miles wouldn’t handle it.) Visit friends while driving the country. I could keep all my camping equipment in it and just randomly tell my dogs to jump in and lets go to the next National Park. See Stonehenge and touch it.  See places my roots are from.

I want to make a difference to people as I do a bucket list – lots of random acts of kindness anonymously.  (I do those now, but would love to do more) Make sure all the bills are paid, make sure final expenses are covered.  No life insurance.  Nothing to sell.

I don’t know how I’ll do it, but somehow, I’ll find a way, I hope.

As the Chemo Drips

So much for posting an update quickly.  I just posted the update I did two weeks ago and sent the copy to my sister.  Yeah, I'm efficient like that.

First, let me explain something.  The fatigue that is caused by the drops in red cell count is telling.  It effects everything.  Your mood, thought process, your out look.  Not that I have had a negative out look, just getting tired of somethings.

I tend to be a bit more cynical and critical when I am tired.  A bit bitchier too.  What can I say - at least I am honest about it.

Life isn't perfect, hell, even when I am healthy it isn't, but it is my life.  To be honest, I was hoping never to have to go through chemo or surgery ever again.  But alas, that is not to be my fate.

One of the things that bother me is the fact this tumor is inoperable.  So chemo is my only choice.  It is on the heart and part of the left lung.  Well, I can't live without a heart or lung, so yeah, I'd say inoperable.

In the past I had chemo then surgery to get the tumors.  Or just surgery when the tumor was found soon enough.  No chemo when you have great margins.  Oh, and radiation in combo with the other two.  This time, there is only one.  Chemo.  What happens if the Navutro doesn't work?  There are other possible therapies.  But no guarantees on any of them.

One of the things I dislike is the, unknowing.  OK, is this making a difference?  Really, how do you tell except when the whole treatment is done and there are scans and xrays.   I had to have an echo cardiogram done Monday.  The chemo drug they are using with the Navutro causes damage to the heart, (remember in 2003 the Cleveland Clinic used another drug that damages the heart.  They used the maximum allowed for a life time) I was watching and you could see a difference in the texture on the bottom of the heart versus an area a the top.  They also used Doppler to show the blood going through the valves.  Color determined what was going in and what was going out.  I haven't heard anything, so I am going to assume no news is good news.

Admittedly, I do like the chemo schedule.  Once a week.  Two weeks treatment, one week off, two weeks treatment, one week off, you get the picture.  That one week no chemo gives your body a chance to try to recover.  Not long enough for mine.

I am tired.  So if I sound a bit negative, don't get in a panic.  If I get a bit over emotional, don't panic, I am tired.  Another 45 minutes and I am out of here.  I may stop for lunch somewhere.  I am craving sushi.

And before you all start, "You shouldn't eat sushi while going through chemo".  I know that.  So does every other patient that goes through this.  But you know what?  I'm eating it anyway.  I am past the point of giving a fuck about what I eat. 

In reality, I am going to die.  Maybe not this time, maybe not the next time but it will happen.  So, why should I not eat things I enjoy?  What is it going to do to me that cancer hasn't? 

If I were rich money wise, I'd be driving and flying all over the United States visiting friends, coming back for chemo, and setting off again.  I'd go to Tuscany and tour the vineyards, and eat lots of good food, go to Utah, New Mexico and where ever the winds blows.  But I'm not rich, so I can't.  but if they ever tell me I am terminal.  I am going to Tuscany, and a few other places.

I think I'll nap for the last bit of chemo.  I am tired.

Fatigue - Or a Little "Whine" with that?

I know, it is past time for an update.  My sister has been asking me for one so she can post it to the GoFundMe campaign she started to help me.  So, I am going to update my blog and send her a copy of this.  It isn’t that I don’t appreciate all the help and want to let people know what is happening, sometimes it is just hard to share some of the things that go through my mind as things progress.

You see, if I am being truthful, not only am I updating folks on the progress with the chemo, but the other issues, like emotional, and the such.  Sometimes it is really hard to put things into words.  Oh, there are times that I am very eloquent and can express what I am thinking but unfortunately many of those times are when I do not have access to put them down.  Well, at least they sound good in my head.

Right now, I am tired.  Physically and emotionally. Frustrated.  Oh, so frustrated.  I am tired of fighting the system.  I applied for SSI, was turned down because I had a total of $2000.00 sitting in the bank.  I applied for disability.  Got turned down because I am working.  I asked how am I supposed to pay for my insurance if I don’t work? Rent?  Food? Utilities? What I make doesn’t cover.  I am a penny pincher to the max, so I am not living above my means.

To be honest I want to work.  I want a job.  I want benefits.  But I am getting so tired of the hunt.  I won’t give up.  I’m still looking and will continue to do so.

Emotionally, I am tired of fighting. I am tired of fighting the system.  I am tired of fighting cancer.  I just want a normal life, go to work, save a little bit, travel once in a while, and retire.  I don’t want to keep working till I die, and I am so tired of cancer.  I am tired of living with it, I am tired of having so many doctors, I am tired of the chemo killing me.  Did you know that the drug they use in conjunction with the Lartruvo is damaging my heart?  That is on top of what was done in 2003.  I’ll be going in for an echo cardiogram with a Doppler to check my heart.

Even with that, there is no guarantee that the cancer will be gone until the next time.  What happens if it isn’t gone?  A different type of chemo.  If that doesn’t work?  A different type of chemo.  Who knows clinical trials. Remember it is inoperable.  Has something to do with the location, you know, the heart thing.  Even if it is gone, how long until the next time?  I had it removed from my lung April 2016, it was back in November.  Yes, it wasn’t officially diagnosed until January.  But you get the idea, six months.  The time frame between was only six months.

So far, the chemo is going well, I suppose.  I say it that way because I haven’t landed in the hospital with a crashed immune system.  Most of the side effects have been fatigue, headache, nausea, loss of appetite, I am losing the sense of taste, which really sucks.  The hair is slowly falling out, but the regrowth of the leg hair is so minimal it is nice not to have to shave for a change. 

I’ve lost weight.  I check my weight every couple of days, and weigh myself in the morning about the same time.  I am down to 107 pounds.  I do try to eat.  But it just isn’t sticking.  That and the cold I picked up somewhere isn’t helping.  I am being very cautious of that, don’t need pneumonia.  Maybe that is why I have been craving soups.  Hot soup.  Well, that and liver and onions.  Hot soup with the steam helps, and it warms me up.  The liver, probably because the iron is low.

The fatigue is the worst.  Well, after the loss of the sense of taste.  Last Friday, I woke up feeling great, full of energy, and felt good.  Which was surprising since I had chemo the day before.  Felt that way most of the day, even went out to dinner with Jim, and Nate.  Saw Logan.  Good movie, it ended two story lines, in a good way.

Unfortunately, most mornings I do not wake up like that.  I am tired and cold.  I am always cold. I get going and get to work, feeling ok.  Even think about going to the grocery store.  But usually by the time I leave work, I don’t feel like trying to shop.  I just want to go home, make some hot tea and put on warm fuzzy clothes.

I am down to one job now.  I was working seven days a week.  The last blood test showed my immune system starting to lower itself, so after some discussion, I told the winery that I wouldn’t be working there for a while.  It is the one place I was exposed to lots of people, kids (they have a play room there and a fantastic bistro).  Being a hospitality service, people show up to work sick since the only way to make money is through tips.  My other job, I see three people in the day.  So, not as much exposure.  Sad thing is between the two jobs together, I don’t meet the roof over the head, insurance and utilities.  I need to find a new job.

On the up side, I got to cross something off my bucket list.  Seeing New Orleans during Carnival.  I wasn’t there for Mardi Gras, but the party leading up to it can be just as fun.

I had enough miles built up on a credit card for an economy round trip to NOLA.  The ride down was lousy, kid sitting on her parent’s lap, kicking the back of my seat.  Spent a week with my son, going to parades and eating.  At least I had a sense of taste then.  It was fun, and I really enjoyed the Chewbacchus Parade.  Basically, it was a Com a Con parade. 

Ok, I am done whining and I am going back to work. 

Dance Six continues.....

Well today was the second treatment with the new antibody chemo drug - Lartuvo by Eli Lilly.   It was recently approved by the FDA, it was fast tracked.  Guess who is the first one in the area to use it?  Yep. You guessed.

I have to be honest, this is the weirdest chemo schedule I have ever been on.  Once a week.  Every other week is it different too.  Thursday is my chemo day.  Wednesdays are meet with the doctor and blood levels.

So last week, this was the list of drugs I got:
Decadron (corticosteroid hormone), Benadryl (yep through the IV), Aloxi (anti-nausea drug on steroids), Emend (another anti-nausea on steroids), Latruvo (antibody chemo drug), Doxil (nasty chemo drug), and Neulasta OBI (suppose to support immune system).  Five and one half hours. Long day.  Oh, and after the Benadryl you do get sleepy.

The two drugs with the most side effects are the Latruvo, and Doxil.  Head aches, nausea, diarrhea, constipation, muscle aches, chills, immune system crash, fatigue, oh yeah and hair loss.

Side effects I have been having, fatigue, head ache, the hair is going, nausea, the taste of food is going too.  Body aches too.  Basically for about four or five days after I feel like I have a bad case of the flu. I still get up every day and go to work. 

Oh, it just dawned on me, I work SEVEN (7) days a week.  And from working that much (20-30 hours at one job, 10 to 14 hours at the other) and I bring home about $800 to $900 a month net.  Life is interesting right now.

Ok, back to the chemo.  Today's treatment was the Lartruvo.  Did you know they fly in the medications the day before your treatment?  I was supposed to get chemo yesterday, but when I was about ten (10) minutes from the office I got a call, the plane the drugs were on had mechanical problems.  They didn't get here.  So they rescheduled me for today.  The total time I was there -  a little over two hours.  Right now I do feel tired and nauseated.

I'll admit.  This time I am a bit concerned about the cancer.  I mean, it is Stage IV (been there, done that several times) but it is on the heart and inoperable.  All the other times they could operate.  Even a couple they operated, and since they got really good margins, no chemo.

So why am I a bit concerned?  Well, if this chemo doesn't work, there will be another (new treatment just approved too) and if it doesn't work, there is another, and another.  I am concerned about having to continue chemo so long it exhausts me.  How many times will I have the strength to go through it?  When I am too tired, how do I face my family and friends?  Look, I am not giving up, but I have no idea what will happen in the future.

Oh, before I go, any woman going through any type of cancer should check out Cleaningforareason.org - they are a nationwide group that has volunteers that will come in and do a general cleaning to help you out.  If they have someone in your area, they will connect you.  There is a limit to how many cleanings, four (4) I think, don't quote me.  But even that helps.

If you don't need cleaning and want to help, they take donations, and may even be able to use your help. 

Time to feed the girls, and take a nap.  I really feel beat this time.