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.

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.