2020 The Year I want to Redo

It has been awhile since I have done a post to publish.  The last one I did is still a draft and will not see the light of day. I tended to talk in circles.

This one circles or no, I'll publish.

I'll be the first to admit that when they were talking about Covid-19 back in January and February I wasn't worried.  Concerned yes, worried no.  I figured it would have been on the  spectrum of the Zeka virus.

Then comes the shit storm of March.  I had a CT scan done where they found three tumors and a potential blockages in the small intestine.

Covid-19 was taking over and things were starting to get locked down.  Or self quarantining if you will.

Then I get a call Apri17.  Get to the ER at Mary Washington.  Thank God that Jim and Liz were on their way here and almost here.

In the meantime the world is locking down borders, running out of PPE supplies. Hobby sewers and professional all turn to making masks for the hospitals.  Hospitals are making employees sign for their homemade mask.

Ok, now I am in the hospital, Doctor says Monday we are doing surgery on you.  Comes back later and says, no, we are doing surgery on you Sunday.  I'll have my "A" team here.  Oh lucky me.

Doc explains they are going in to remove the blockage of the small intestine.  If they can get some of the tumors that would be a bonus.  But, and this is a HUGE but. I may end up with an ileostomy bag.  Temporarily.  Depending on how healthy the small intestine is.

Well, I wake up to find out that they were able to get the blockage, and all three of the tumors.  The tumors were all located near the blockage.  I am left with two things.  A small intestine that is the smallest it can possibly be and live, and an ileostomy bag.

The one thing I kept saying I don't want.  A bag that I have to take care of because I constantly shit it in.  To say I was/am horrified puts it mildly.  I am horrified and embarrassed.

They teach me how to change the bag and empty it.  They can't teach me how to deal with the leaks, the seal letting go, shit running down my leg, the bag letting go during the middle of the night,  No, these are all things I have to learn on my own. I have to learn to deal with and accept.  Besides, it is only temporary.

They wouldn't release me until I was sure of changing out my bag.  Every other day I had a nurse that specialized in bags show me and watch me change the bag.

Ten days later I am home, building back up my strength and building my confidence with the bag.  I was getting my strength back, walking, eating, showering.  Almost a "normal" life.  I even got to drive.

In the meantime, the Covid virus is still in the head lines, people are getting antsy to get out and try to have a life beyond quarentine.  Governors are talking about lessening restrictions in phases.

May 17.  I remember looking at the calendar and thinking only 4 more weeks.  I can deal with this for four more weeks.  Ate well that day, and played Catan with Jim and Liz.  (I lost) but I felt good.  Decided to go to bed about 9, got a sudden pain in the lower left absomen.  I figured it was nothing and that I'd lay down and breath through it.  Boy was I wrong.

The pain kept intensifying with no breaks.  After about thirty minutes, I tapped out to the pain.  I texted Jim saying I had to go to the ER, I couldn't take the pain anymore.

Getting me to the ER involved an ambulance ride, luckily they had a "chair" they could put me in to handle all the stairs.  Off to Mary Washington ER.  Once there I got checked in, and had to wait.  When they finally got me in back they couldn't give me anything for the pain because my blood pressure was so low.  But in the meantime, a CT scan was done.

Air in the small intestine, and ulcers.  So they took a non surgical approach to the ulcer in the intestine.  I had so many IVs going they finally put in a pik line (took two tries).  I had IVs on the pik line, attached to my port, plus and IV in my right arm and hand.

Everything was going in through the left arm.  It swelled up and started leaking through the skin.  My vena cava is reduced in size, so my system is working on rerouting my veins.  Lots of little veins to take over.  Well, that produced a huge swelling of my neck.  In fact I had no neck and couldn't swallow.  Two doses of super steroids helped with the swelling and swallowing issue.

In the meantime they do another CT of the instestine, they discover cycsts.  Off to get them either cut out or at least drained.  They could only drain them.  More antibiotics.  While that is all happening they do an ultra sound of the neck and left arm.  Turn out I have several blood clots.

They put me on blood thinner and draw blood every four hours.  They can't use the left are for blood because of the pik line and swelling, so they used the right arm.  My entire arm turned black and blue.  Never mind the right arm is swelling too.  Just not leaking like the left.  Looking at my right arm today you would swear I was a junkie there are so many needle marks on my arm.

It seemed every time they "fixed" something, there was something else to take its place.

I finally said enough. No more.  No more chemo, no more trying to use poison to make it better.  I was feeling weaker and weaker every time something was done.  No more surgeries, even if that means I have to keep the bag.  I have had enough.

I am doing hospice.  At least at home I can try to get stronger.  And no more blood draws.  Enough is enough.

My family understands why I decided what I did.  In fact I am stronger today than when I came home a week ago.  Still weak, but stronger.

I've been technically fighting cancer since 2003.  Although I did have seven years of no evidence of desease.  I am tired of taking poison everyday.  I am tired of the anxiety over scans and waiting to hear what the doctors have to say.  I am just tired.

I'll take time with my family and friends and what peace there is left in this world for me.

What was going on in the world while this was happening? Riots, protests over a wrongful death.  Demands for justice.

Anyway you slice it, since March of 2020 this year turned to shit for everyone.

Please be kind to your neighbors, family, friends and strangers.  Your small kindness can make someone's day better.

For the Want of a Card

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This has given me hope for humanity.

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

Time Keeps on Slipping, Slipping....

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I just don't want to have it end.

Being Termnal or Having an Expiration Date

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

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

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

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

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

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.

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. 

It has been awhile - Dance five complete, Dance six to start

Well, the last time I posted, it was to explain my arm tattoo.  Since then, spring 2015 they found a tumor in the left lung.  You know my good lung. 

It was decided that they would do surgery (separate the ribs, remove the tumor), if good margins were obtained, no chemo.  They chose to take this route since the last time I had chemo it nearly kill me.  Well they got good margins!  Surgery on Monday, back to work on Wednesday. 

Well since then the contract I had a job under at the Marine Base ended, so I became unemployed.  But I have Cobra, for now.  October, a small spot showed on the CT Scan.  They thought it was a small pocket of fluid, and opted to watch.

November I started having issues breathing.  Like a weight on my chest.  Some days it was worse than others.  Thanksgiving was spent in New Orleans with my kids, and it seemed OK, so I figured that maybe I had just had a chest cold or something.  Once I got home, one day it would be OK, the next it wouldn't.

It kept getting worse, and finally after a rough weekend, I figured on Monday I'd call my Family Doctor, and be told I had walking Pneumonia.  Well, Monday I felt OK, not perfect but a little better.  Tuesday, I felt crappy, so I called.  Talking to the appointment clerk, she transferred me to the nurse, I told her I was having a hard time breathing, a weight on my chest.  Well, she said go to the Fredericksburg Office to their urgent care, me, I figured, I'd just drive to the hospital near me.  Only a few miles away, and I would be able to drive home.  Yeah. 

The ER doctor came in and the "fluid" area was larger.  They wanted to keep me and have radiology put a drain in the lung.  OK. After that he came in and tells me that they are going to transfer me to Mary Washington Hospital because they are better equipped to handle my issue, and possible complication.  (Translation, my doctors wanted me closer, and the hospital is considered a trauma center).

I met one of the Oncology doctors mine works with, he tells me that they will be following, and talking to the Tumor Board about me the next day.  He started talking about Antibody treatment and newer just approved by the FDA treatments.  I just dismissed it.  All my doctors track me. If one knows something, they are in communication.

Well they put the drain in and no fluid really came out.  After a couple days of it, I talked to my Thoracic Surgeon, they want to drain it surgically, me - I am ready to agree to anything as long as I can breath without an elephant on my chest.

Fast forward to after surgery.  Talked to the doctor, he said there really wasn't fluid in the lung but pockets on the lung and attached to the heart.  Me not really thinking anything worse, cool, I can breath.  He got everything he could, and sent it out to several labs for biopsy.  Everything they take out of me goes for biopsy.

January 7th.  The surgeon is back in town, at 8:00 AM, I get a call from him.  Do you have time to talk?  Sure! I say in my normal upbeat voice.  Then he drops the bomb.  The cancer is back.  All the doctors know.

January 13th.  I had a follow up appointment with the surgeon who did the Whipple, and removed the tumor from my leg.  We chatted (yes he already knew)  He asks me what plans do I have?  Well I want to go to New Orleans for Mardi Gras, but that schedule hinges on treatment, and I'd really like to go to Tuscany, see the Rockies, the Grand Canyon.  I want to take a helicopter ride over it and a donkey ride into the canyon if they still do that.  He told me do it.  Don't let the treatment interfere with doing it.  OH OH.  When a doctor says that, it is time to be a bit concerned.

Well, I went to the Oncologist office after that, yeah, it is back, it is attached to the heart. 
Me:  OK, so now what?
Doc:  It is inoperable.
Me:  Oh.  So translate.
Doc:  Stage IV, inoperable.
Me:  OK, so what is next?
DOC:  Antibody treatment, just approved by the FDA, but it is approved with only Adriamycin.  Which you had the entire amount allowed.  Anymore would damage your heart.  But there are alternatives to it; the insurance company will have to approve it.

He wanted to start this week, but everything needs approved by the insurance company.  I have a CT scan scheduled Friday to see what it looks like.  They need to try to "Router Rooter" my port, and if they can't, replace it.  But it all depends on the insurance approval.

Now since I am unemployed, I have Cobra.  But my Cobra runs out in March, so in order to get insurance and covered during the Open Enrollment (pre-existing conditions) So, I have an ACA policy that kicks in in February.  So one insurance company will approve anything in January, and it will all have to be redone in February. 

So I will be shelling out for out of pocket and deductibles on two policies.  But at least I won't have to meet the $5500 on Cobra, and the $7000 on the new insurance.  Very confusing.

But I am a bit frustrated.  I work two part time jobs.  Between the two I bring in about $930 a month.  More than unemployment, and living off my savings while looking for a job. 

ACA said I make too little for a tax credit. 

Yes, I am still looking for a job.

The Story of a Tattoo

Phoenix in process by Robert V. Black Dragon Tattoo, Urban Md

I was chatting on the phone last night with a friend (yes, me on the phone AFTER work! Amazing isn't it?) She asked me a very good question, (this isn't her exact words but hopefully close)  Why would you get cancer tattooed on you?  What about all the prayers and family and friends that helped and supported?  Aren't you throwing it back in God's face by doing that?  All very valid questions, and to be honest, questions the tattoo is supposed to spark.  Not only those questions, but questions about cancer, dealing with it, helping someone who is going through it, what it is like to survive it.

For me, tattoos are very personal, not only the image, but the placement too.  If I wear a polo shirt or a 3/4 sleeve shirt, 98% of it is covered.  Just a bit of color peaks out, which can pull questions out of people.    They represent a multi layered story.  They are part of my life.  Each one has multiple layers of meaning behind it.  The only way to know why I have it is to ask, and be willing to listen and try to understand from my point of view, not yours.

So, why this one?  Why say Fuck Cancer, I beat it IIII times?  Because beating cancer is a multi layered thing to me.  And to me beating it is not the same as defeating it.

On the most obvious level, I beat it physically, with the help of my family, friends, and prayers.  Many, many prayers and candles being lit.  Many prayers by those of all faiths.  Christian, Protestant, Catholic, Jewish, Muslim, Wiccan.  Each and every one greatly appreciated, and have touched me in more ways than the reader can understand.

On a less obvious level, I wanted something to look at to remind me of that.  Every time I look at my tattoo, I remember, and I give thinks for my family and friends.   About now you are asking yourself, "Why would you need something to remind yourself of that experience?"  Because, I am human.  Being human, things can become just a part of the background.  Part of the memory bank that gets visited once in awhile. 

How can you forget that experience you ask?  You don't forget it, not in reality, it is always there, but you can become compliant in the fact it is in the past, and fall into old ways.  I don't want to do that.  I don't want to take life, and the support of friends and family for granted.

Another level, I want to encourage people to ask questions.  It already has. I was at a coffee shop reading my Kindle (love my Kindle, but the battery isn't holding the charge as long).  Yes, I had the sleeve rolled up, just put lotion on it.  A young woman came up and commented on it, then started talking to me about cancer, she was just diagnosed with  Stage I breast cancer and she was scared.   We chatted for awhile, I listened to her, and when she got up to leave, she felt better, and decided that she was going to get involved with a  support group for breast cancer patients/survivors.

Another layer, and this is one that is very personal, and no matter how many prayers and help I have received from my family and friends, I had to deal with on my own.  No one on this earth can help you deal with your own mortality and the fact that cancer is a very intricate part of my life. 

You see, because of the type of cancer I get/have it isn't a matter of if it comes back, it is a matter of when.  I have to accept it, I have to embrace it.  Cancer is a part of me.  Cancer and I will dance through the rest of my life.  Cancer and I will box, go round and round with it. 

I didn't defeat Cancer, but I beat is so far in four rounds.

No one wants to die.  Me included.  There is way too much out there to see and do.  I have accepted my permanent dance with cancer. 

So every time I see that tattoo, I remember that fearing what maybe is stealing what can be.  Stealing my joy, stealing my life.

Look, like I said I am human.  Yes, I need reminders.  Winter especially.  I hate winter.  I tend not to go out in the cold.  I don't like it one bit.  I miss the sun, I miss the heat of the sun.  The leaves on the tree.  It is very easy to start to forget things when it is cold, dark and depressing outside.  It is very easy to just sit with a warm blanket, books, hot chocolate, and let life pass me by.  Not do a thing.  I don't want to fall into that.  Although once in awhile I will admit to it.

My tattoo wasn't something I did on the spur of the moment.  I thought long and hard about what I wanted and what it would say.  Even after I found the right tattoo artist to do the piece.  I thought long and hard.  After talking to my son, and finding that he thought it was a good idea, I talked to the artist and saw the design and knew that, yes, this was the right thing for me.

So no it wasn't vanity, hubris, or ego.  I'm not spitting in fate/s face and being defiant.  But the opposite.  A reminder to humble and to be grateful, for without many, many things that cannot be listed but are represented in the tattoo, I would not have be able to rise from the ashes and continue to be who I have become.

Make sense?

Phoenix by Robert , Black Dragon Tattoo, Uraban, Md