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

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.