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.

Lost in the Sauce

Lost in the sauce is a good way of putting how I have been feeling lately.  Well, at least since I read the CT Scan report.

Well actually, it started before my reading the report.  It all started with a phone call from the doctor's office.  I get a call "Go to the ER, NOW."  I ask why.  The nurse replies "I don't have that information, the doctor wants you to go to the ER NOW.  Which ER are you going to?"  I said ok, I'm going to Stafford Hospital ER, now.  They actually called the ER and told them I was on my way.  

When I got there, I had maybe  a 5 minute wait before I was in the back in one of those wonderful hospital gowns.  The nurse that walked me back told me the doctor's office called and let them know  I would be there, and I would have to wait to talk to the doctor about the CT Scan.

Turned out that my intestine is folding back on itself.  Insusseption I believe it is called.  Blood is taken, the ER doctor talks to the surgeon that did my Whipple, it comes down to wait and see.  If I get any severe pain, or start running a fever, get to the ER because they will have to do surgery.  OK I can handle that.  So I got to go  home.  But during the conversation with the ER doctor, he mentioned there were new tumors in my intestine.  I thought I heard him say that but was more concernced over the possiblity of having to have emergency surgery and how  I was going to have the dogs taken care of and how I was gonig to get home.  So I let it go.  My mind didn't acknowledge the fact the tumors spread.

Then I finally got the notice that the report for the CT Scan was available. It was one of those good news/bad news type of deals.  The good news is that the chemo I am on (Votrient) helped shrink the tumor in my left lung by 2 mm.  Actually, that would be great news if that were the only news there was.  The bad news, two new tumors in the intestine.  Still in the back of my mind I wanted to have misread there were two new tumors.

To be honest, I wasn't all that concerned, I figured I'd see my oncologist and they would change my chemo to see if it would help.

Let me be honest, I was getting anxious over the whole thing.  I wanted to see the doctor and get the chemo changed.  Somehow I wanted to believe that maybe I read the report wrong.

I mean seriously, how does chemo work on tumors above the waist, but lets tumors grow below the waist?  The chemo is in the blood!  It goes everywhere.

Well, I finally got to see my doctor, I was in a fairly good mood.  All I needed him to do was confirm what my mind wanted to happen, change the chemo.  

This time he said the word surgery.  That stopped me cold. He wants me to talk to my general surgeon and to an oncology surgeon.  What they decided determines what happens next.  Right now I am waiting for the offices to call me to set up appointments.  They were supposed to be set up for next week, but so far I haven't heard from either one.  So I am stuck again in the holding pattern. I saw Dr. VAughn on the third of March.

I am not that crazy about surgery.  I've had two abdominal surgeries in the past.  I was cut open from above my belly button to just above the pelvic bone so they could access the intestines.  They were not easy surgeries.  They took a lot out of me.  

Part of what is bothering me this happened when I just started to work out and try to get into better shape, funny thing being is that one of the reasons in the back of my head was because of possible surgery.  Part is the fact I actually have been taking steps to go back to school for the summer quarter.  That is May.

Recovery from surgery can take a long time for me.  It isn't as simple as people think.  It isn't a snip, snip you are done type of thing.  People mistakenly think that.

Add to that if they decide that surgery just isn't an option for me, Doctor Vaughn is talking about adding another drug to the Votrient to see if it will help.  Which translates into more side effects. How will that affect school?

On top of that Doc looks at me and says "You've been battling this for a long time.  The bag is getting thin."  Translation - they are running out of things to try.  I'm at the bottom of the barrel scraping it. 

I may be running or have run out of options.

I have all this running through my head while waiting for a doctor's office to call with an appointment.  No wonder I am depressed.

Depression

Depression isn't something that only cancer patients suffer from.  Anyone can suffer from it.  It is one emotion that cancer patients share with everyone.  This is my whine about my depression.  Yes, I am working on a whiny post about how crappy I feel.  You may want to bail now.

This may be depressing or even make you angry.  But that is OK, because it gets a reaction from you.

If you know someone who suffers from depression either openly or silently, let them know you are there.  It can make a huge difference.

I am depressed.  Very depressed.  Normally I try to hide it and put on that brave face like nothing is wrong and nothing can stop me.  When I am around people I have a little switch that I can flip that puts the façade of everything is great.

Cancer is physically and emotionally exhausting.  So is life to be honest.

I am at that Stage IV of the four emotional stages of terminal cancer.  Actually it isn't just terminal cancer that depresses me.  Life in general is depressing, but the cancer is the main reason, well one of two  main reasons I feel this way.

I am tired of the hurry up and wait routine of cancer.  I think I have said that before.  Hurry up, set up the appointment for the doctor, now wait for the appointment.  Hurry up and set up the appointment for the scan, now wait for the scan, then wait for the doctor to read it.  Hurry up and wait.  Then you get the results and it is either hurry up and wait nothing has changed or hurry up and figure out what is next because it spread.  Hurry up and wait, don't plan anything because this can screw up the best laid plans.  Or you go and plan or try to plan around the appointments or the unknown.

Hurry up and wait.  Hurry up and wait.  I am tired of hurry up and wait.

I am tired of being on disability.  I am tired of being worried about making sure I can keep Medicare, I am tired of not working.

I want to work.  I need a job.  I need one that pays what I get on disability and has good health insurance.  Yeah, the health insurance is a biggie in the hurry up and wait game.  Yes, I want off of disability and I want to work.  But finding that job that pays, has insurance and is willing to deal with the cancer issue is a rarity.  Yes, discrimination is illegal.  But that doesn't mean it doesn't happen and proving it is next to impossible.

I am tired of feeling alone.  I need people and friends.  Folks to hang out with and talk to.  Someone that comes over just to BS.  The connection of someone being there. I feel like my life is a drift in between the times that there are doctor's appointments, scans and the next job application.  Like I am this little boat in an ocean just drifting with no where to anchor.

This isn't my best writing.  I didn't expect it to be, but it is truth about how I feel, and I am sure there are others out there that feel the same way.

I am so tired of drifting and feeling lost and alone.  I am so tired of feeling depressed.  I am so tired of cancer and all the bullshit that goes with it.  I am so tired of feeling worthless, that I have to depend on everyone if I get sick.  I am so tired of feeling like if something happens I let people down, I am so tired of this whole cancer thing.  I am so tired of feeling like a drain on my family and friends.  LIke I always need them to be here an around me to make me feel better.  I am so tired of being the strong one.  I am so tired or feeling tired.  I am so tired of the lack of taste and having to take meds every day.

I am just so tired.  And I am sure there are others that feel the same way as I do.

I need to go back to school or something.  Free.  Yeah, that is the killer.  Anyone know of a good search for grants for old, dying people who need to get a job?

I am tired of feeling worthless, like a drain on everyone.

Yeah, I'm depressed, but I am trying to be honest about it.

Trepidation

Trepidation

noun

tremulous fear, alarm, or agitation; perturbation.

nervousness, dismay, consternation, fright, apprehension, disquiet, excitement, jitters, uneasiness, dread, terror, panic, horror, emotion, perturbation, agitation, shock, palpitation.

Yes, that pretty much sums up the emotions I have been feeling of late.  There is a two-fold reason for it too.

Well, the first one is obvious.  The whole no Medicare Gap coverage for people under 65 that are a hair above the poverty level.  And the whole Part D drug coverage thing.  I mean a co-pay of $3250 for my chemo every month is a bit rich for my blood.  That is a bit rich for anyones’ blood.  Thank God that the drug portion is resolved for the moment.  (Yes, I still have that feeling that something was misunderstood and I will end up with a surprise bill.)

Two weeks ago, a Monday and Wednesday were training.  Job training.  I have been putting in applications to everyone within a short drive of my home.  (There are two shopping centers.) Target called, and would not hire me because I could not work two days a week.  I figure that would give me two days for any tests, doctors’ appointments, and down time in between working.

Lowe’s called.  I got a hired for a part time job in Paint.  I cannot work over 15 hours a week or I lose disability and Medicare – hey 80% of doctor’s visits and hospital stays are better than zero.  I need to find a way to save money for the car and other expenses.  Like covering the 20% cost on doctors’ visits.

They do have health insurance for Part time employees, but it is a wellness plan with no hospitalization.  The cost of the plan per year is not worth it, it only covers wellness visits, besides the $40 a month can cover part of the cost of the monthly oncologist visit.  They also offer vision.  I need to get my glasses changed.  Glasses and exams are not cheap either.  So, vision insurance for the win.

Since then I have put in two four-hour shifts.  To say I have been apprehensive is putting it mildly.  I mean I fall short of full-blown panic attacks.

I was honest when I interviewed them.  I have cancer, I am out of shape.  I can lift 25 pounds but do not expect me to be fast.  I can do things but I am slower than a person that has two good legs and two good lungs.  I had originally applied for Lawn and Garden.  But they offered me Paint. 

I would have so failed Lawn and Garden.  I do not know what I was thinking.  Yes, I do.  I wan thinking that the extra money would help.  But being out in the cold and constantly hauling heavy items.  I guess I was thinking more of taking care of plants than the back-breaking work they really do in Lawn and Garden.

Wednesday, was orientation and computer training.  I was a bit uneasy about going.  Not bad, but I was edgy.  I survived.The following Friday was another day of training, but I was so worked up about going I almost did not.  I knew it was finishing the computer training, not being out on the floor.

It did not matter it was computer training.  I kept thinking about when I get out onto the floor.  There will be more exposure to people.  More of a chance to make mistakes.  I can carry a gallon of paint.  The 3.5 gallon is a bit difficult but I can slowly carry it.  I cannot budge the five-gallon buckets.  But I did tell them I was out of shape.  I was on chemo.

My first day on the floor I was in full blown freak out.  But I survived.  And I survived the

second day too.  But I came away with a few concerns about the job and my physical ability at present time.  So, I let them know my concerns, and am waiting for a response.

When they first offered the Paint job, I thought, “Oh, I can handle that I worked in Paint at Home Depot in the early 2000’s.”  At that time, I was running the shelter, hauling 40 lb. bags of wood stove pellets, walking up and down stairs and ladders.  It was before the cancer in 2003.  It was when I had two good lungs.  When I did not have an occlusion on the Vena Cava or tumors in the lymph nodes along the trachea.  One of the things that started me worrying was the “How to Lift Properly” training.  I cannot lift things like that.  I have no left hamstring.  If I squat down, I need one hand to balance to get up.

They need someone who can perform.  I do not want to disappoint people who put faith in me.  I do not want to disappoint myself.  I do not want to disappoint anyone.

But I cannot guarantee it will work out the way I want it to and that causes trepidation.  (Doesn’t that sound like a made-up word?)

I know all I can do is try my hardest to succeed.  I do not want to fail.  Failing sucks eggs in a closet.  I do not like the idea of failing.

This is so out of my comfort zone it is not funny. 

I would rather jump out of another airplane.

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.

Face Your Fears

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

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

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

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

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

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

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

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

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

Haven conquered the fear, but I have gotten better.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So what little fear have you faced today.

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.

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 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.