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.

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.

The Holidays and Cancer

I hope this finds everyone healthy, happy, and looking forward to celebrating with family and friends.

This Christmas is my first Christmas past my "expiration" date or hospice date of  December, 2018.

Actually I am calling it my "first" Christmas.  On a Facebook post in the group "Jean's Bucket List", I posted that I wanted cards to celebrate.  It has been shared 145 times the last time I looked.  Not bad for a no body.

To be honest, I was hoping the cards would come in and help boost my spirit.  I won't lie, this is a weird way to celebrate a holiday.  The first one past when I was expected to be dead?

I find myself on an emotional rollercoaster.  And no where on this trip is the holiday spirit showing its merry little head.

Bailey

I'm somewhere in Stage IV, bordering on Stage III in the emotional department. The Four Emotional Stages of Terminal Cancer.

I'm grateful I am still here, but I also feel guilty I am still here.  So many that had cancer are not.  Why am I?  I keep saying I am still here because I need to be a pain in the butt for my son and daughter.  Which, I pray I am not.

People keep asking me what I am going to do for the holidays.  The week before I will be able to spend time with my son, still working on a way to see my daughter, schedules interfere.  On the day itself?  December 25th?  I will be home with my two dogs. There is a maybe of meeting a friend for dinner, she's spending the day with her dog too.

I have a good life. Not every exciting, but I have a roof over my head (thanks to my son), and loveable 

Sasha

dogs (again, thanks to my son :D ).  Just in case you don't know, I have two rescue dogs.  I don't go anywhere if I can't take them or have someone I trust come babysit for them.  Sasha, the 10 year old is a nervous nelly.  She is scared of loud noises.  The training from the base has her hiding in the closet.  Bailey the 9 year old is the one who could care less, so she always is there with her, watching over her.

Huh, right now I feel better, so I am off to vacuum and do some laundry.

A Visit to a FB Post - The Gift of Experience

I posted this on Facebook a year ago, and to be honest, I forgot about it.  That is until today when someone liked it.  I re read it and started wishing I would have rediscovered it at the beginning of the hectic holiday season.  

Everyone is in such a hurry to find the perfect gift, rushing here and there, using up their life energy to find it.  What if that perfect gift was as close as your phone?  You know what I mean, that thing you are probably reading this on.  It really is a multi functioning tool!!

Not only can this be a perfect thing for someone on your list, it is also a gift to yourself.  What a bargain! Two for one!

I was chatting with a friend a while ago.  She was lamenting over getting a gift for a mutual friend.

My suggestion was - give her an experience.

Her response - I can't afford to give an experience!  That stuff is expensive!!  Then I explained.

The gift of an experience is not a big trip.  It could be something as simple as finding a new coffee roaster, going there and having a cup of coffee enjoying the fact you are together chatting.  Or to a bakery that is out of the way known for pie, a card or letter, whatever your imagination can come up with.  Maybe a trip to the zoo.  Or simply sitting on a park bench enjoying the weather having lunch.  Or a phone call just to laugh at things in memory lane.  Yes, phone calls are gifts.  (Even to those of us who have come to hate phones)

A gift of experience doesn't have to be something big, heck, it doesn't even have to be from someone else.  You can give yourself gifts of experiences.  

The gift is connection.  That connection will last longer than things.

Think of it this way.  Things are just things.  They can be useful, or decorative, even wearable.  But they get old and fade, maybe break, go out of fashion or just become a bother because it is one more thing to handle or deal with.  

An experience is forever!!  The memory is always there accessible. The laughter or the simple serenity of the moment the sunshine feeling warm on your face and the breeze gently blowing your hair.

So we all can give each other and ourselves those memorable gifts.

The Four Emotional Stages of Terminal Cancer

Well, some people may say there are more, but I believe there are four major stages.

Stage I - Devastation & Anger

Your world is on fire and there is nothing you can do

No one wants to hear the words you have cancer.  Honestly.  No one.  There is less than no one that wants to hear the words you are terminal.  Although, come to think of it, I am not sure they word it that way today.

I am going to be honest here.  I didn't go through this stage; well, at least the devastation part.  I had actually expected to hear it.  When you are diagnoised for the sixth time and they tell you that all they could do was de-bulk the tumors, you sort of know.  But I will admit, when one doctor slipped and said "I encourage all my terminal patients to go do what they want."  I thought, well damn it is about time someone said something.

During this stage you grieve for your life.  You grieve for those you will leave behind.  You grieve because you don't want to cause anyone pain.  You grieve for the things you want to do but won't be able to.

The devastation slowly turns to anger, and for some it boils red hot.  You're angry about cancer interfering with your life, your plans.  Basically it just came in and F**ked up your world.

After being red hot angry, you start to funnel all that negative anger into the next stage, well hopefully you do.

I actually forgot about the anger part and had to do an edit to add it.  Anger is such a negative feeling and it really doesn't help.  Yes, I went through the anger.  How dare cancer come back again and again to interfere with my life?

When I am feeling angry, I try to funnel the anger into Stage II.

You don your shiny armor and brave face

Stage II - Fight to Win
During this stage you put on your shining armor and proclaim to the world you will fight this monster and you will beat it.

You gather your troops, your family and friends.  They cheer you on.  They even help you do things you have only dreamed of.  They watch you with pride and admiration.

You laugh at the cancer, knowing that you are greater than it.

You are proud to set the example of being brave in the face of death.

In reality this stage can be exhausting.




Stage III - Acceptance

In this stage your armor is beat up a bit, lots of dings, you've been through chemo, maybe even radiation and surgery.

You start to accept and come to terms with your mortality.  You start to encourage people to do things, make memories.  Don't give things as gifts, give experiences and memories.  Memories last forever.

You realize how precious the little things are.  You even work on the bucket list.  Maybe even with a vengeance.  That way you have memories.  You take whoever you can on the journeys so they have the memories too.

You  notice your friends may not be around much, not that they don't want to be but they have lives of their own and you seem to be doing well.

You haven't given up, and you fight, but you start really living life like you should have all along.

Stage IV - Exhaustion - Isolationism

You are tired before you even start

Your armor is pretty damaged here.  You've been through hell and back.  In the beginning of this you start to pull back from people.  You don't want to have them hurting when you die.  Gradually you pull back till there is no one around or very, very few.

You try to protect others by isolating yourself.

Add to that the emotional, mental and physical exhaustion of doctors appointments, scans, blood tests, chemo, radiation, even counseling for some.

In the back of your mind you think, how much longer?  How long to I have to act like everything is fine, that I am ok.  How much longer before the chemo doesn't work, how much longer before I end up in the hospital.

You feel like your whole life has become cancer.  Everything you do or plan revolves around it. It is emotionally and physically exhausting.  It is depressing.

Depression really rears its ugly head here.  It feeds the negative feelings, the negative feelings feed the depression.  It is a vicious cycle.

You convince yourself it is for everyone's best

This is the stage you need help the most, but most people don't realize it happens.  They always believe the brave face, and miss the little things that give it away.

How can you help prevent them from isolating?  Get involved, go for coffee - don't take no for an answer.  Don't let the person be alone all of the time.  24/7 alone in ones head can cause some reall messes.  Pick up the phone.  Trust me at this stage they aren't picking the phone up to call anyone if they can avoid it.

Do something to let them know that they haven't been forgotten.

I know communication goes both ways but when you are in this stage it isn't easy to admit it, and harder yet to ask for help.

Hell, I can't say anything about asking for help.  It is the hardest thing in the world for me to do so I just keep my mouth shut other than when I whine in my journal or blog.

Some people will go back and forth between Stage III - Acceptance and Stage IV - Exhaustion/Isolationism.

I've just spent a long time in Stage IV.  I am working to bring myself out of it.  I am trying to reach

You hide your feelings

out and socialize more.  It isn't easy.  But I am working on it.

I am also working on the asking for help thing.  Not doing so well with that.  I am blessed to have a couple of friends that see my red flags,  and family that does too.

Just remember, there is no time limit to any one of these stages.  A person can experience all four in one day, or different ones on different days.  You can experience them in different orders.

There is no hard fast rule to this, well, maybe there is one.  It is an emotional rollercoaster.

It is a rollercoaster we do not want to ride but have no choice.

It is a rollercoaster we ride and unfortunately we need our family and friends to ride it with us on occasion to make it possible to keep fighting.

Just remember, our caregivers go through this too.  It is really hard on them.  They don't know what to do and if we don't communicate, they feel helpless and lost.  Just as much as we do.

Cancer is hard on us, but it is just as hard on family and friends.  They want to fix us, to make us better and healthy, but they can't.

Being able to communicate is the key.  So if they push to help, don't be angry, be grateful.  Let them help.  Don't be hard headed.  Learn to ask for help.

Always, always be kind to yourself.

The Most Asked Question - How do you do it?

I'm not sure that today is the best day to be writing this; but the words are rolling around in my head and I can get on the laptop to put them into "print."  The reason I say that is I am not in the best of head spaces at the moment, but maybe that is not so bad.  It means a glimpse into the other side.

I don't know how I do it.  Part of it is guilt.  Does that surprise you?  Yes guilt.  I feel that I would be abandoning the people I love.  Abandoning my son and daughter, my sisters, my friends.  I feel the guilt because I can imagine the sadness that my death would bring them.  I do not want people I love to feel sad because of me.

Here is the other side of the guilt.  I feel guilty for still being around when so many that have been diagnosed after me had passed on.  Survivor's guilt they call it.  It sucks.  I've lost too many people to cancer.  Waiting for it to take me is like waiting for the other shoe to drop.

How do I do it?  I don't know.  I am tired.  I  may have mentioned it before in a post.  But I am tired of cancer.

Once was enough, 2003 was more than enough, but no for some reason I drew the lucky number in the cancer lottery.  2011 was awful.  I lost 2/3 of my right lung that year, and part of my intestines.  Spent three quarters of the year doing chemo, surgery, and being hospitalized.  Even lost a portion of my right pectoral muscle that year.  That was the year the earthquake hit Virginia.  I was in the hospital when it hit.  Then 2013, 2014, twice in 2016.

The first time in 2016 was May.  Tumor in the lung showed up.  Surgery, they got good margins, no chemo.  Then again in November.  I started feeling like I couldn't breath because of bronchitis or walking pneumonia.  Finally went to the ER.  Boy was I wrong.  Surgery was scheduled right before Christmas.  I thought they would just go in remove the tumors, but no, all they could do was drain the lung and debulk the tumors.  They are in my left lung, on the sack of the heart, in the lymph nodes, on the Vena Cava, and aorta.  Surgery really isn't an option anymore.

So yeah, I am tired.  I am tired of the trips to the doctor's office and his smiling face, telling me how great I am doing even though they really can't do anything for the cancer other than try to keep it from spreading, which really has been proven fruitless.  Eight months on a chemo and it spreads.  Since January 2017 I have been on three different chemo drugs.

I am tired of the blood draws, the CT scans, waiting for the reports.  I am tired of them trying to make everything sound so up.  Just be straight with me.  Did it spread?  Yes or no?  What is the next drug?  Just tell me.

Right now they are trying to give me quality of life rather than quantity.

The chemo I am on, Votrient, is the easiest chemo I've been on.  So far my side effects have been nausea, some fatigue, some shortness of breath, and my hair changing from dark brown to varying shades of silver and grey.  Salt and pepper.

I am tired of having to remember to take poison every morning.  800 mg of it.  Yeah, my breakfast is 800 mg of Votrient and water.  I have to wait about 15 minutes before I can have my first cup of coffee.

I am tired of feeling weak.  The Yolandis that I was on caused major breathing issues, so my physical activity was limited.  Kind of hard to want to do something physical when you can't breath.  Now on the Votrient the breathing issues are still there, but improved 100%.  I need to start working out to get into better shape, but I need motivation.

I am tired of feeling like I am a drain on my family and friends.

I am tired of worrying about co payments, taking meds, fighting the bills that were supposed to be covered.  Tired of worrying about gap insurance now I am on Medicare.

Did you know that insurance companies can pick and choose the areas (counties) they want to cover?  They don't have to offer gap insurance to everyone?  If I were 65 I'd have plans available.  Since I am not there is only one plan for people under 65 on disability, and they don't cover my area.  Medicaid is out because they said I am $200 over their cap on qualifying.  So now I have the 20% to cover that Medicare doesn't.  Grateful they cover 80% of the doctor's and hospital, but, yeah, I'm tired of worrying about that.

I am so tired of needles and blood draws, and reading then rereading the reports.

I am tired of feeling like if I show any weakness people will think less of me.  I am tired of feeling like I whine.

My daughter Jasmine, my dog Sasha, me, my dog Bailey

I am tired of the isolation.  I feel alone.  The days are all filled with the same thing.  I try to motivate, but it is really hard some days.  Yes, there are days I just go back to bed.  There are some days that I don't want to get up, but my dogs remind me that they are my responsibility and I have to take care of them because they love me.

Don't get me wrong, I don't wallow in pity.  I am working on socializing more.  I volunteer twice a week at Mary Washington.  One day for three hours we sew cough pillows for patients.  And the other day I volunteer I work in the Gift Shop.  I also go to "Meet up" things, there is a group of single people 50 and over that meet up and I try to go once a month.  I need to make more friends locally to have coffee with and talk to.  Like I said, I am working on it.

I am so tired of feeling like I am in white water rapids being rushed down the river with no hope.

How do I do it?  I don't know.  I journal.  Everyday.  Even if all I do is write down that I feel like crap.  I try to write something down every day to get it out.

I write this blog, yes, I don't write often, and it may not get read much, but with it I am trying to show my inner feelings and frustrations, so it is an outlet.  I actually end up feeling better by the time it is published.

How do I do it?  In my heart I know that my family and friends are there.

An update on the Lowe's job.  I emailed my supervisor about my concerns when it came to the customer service, and my inability to lift the 5 gallon buckets, and my limit to 15 hours a week.  Along with the concern of being scheduled three 8 hour days in a row.  (Down stocking and fronting on a four hour shift exhausted me, and I was honest with them in the interview I am not in shape, and I need to work on stamina).  After not hearing any response for five days, I figured that maybe I should work on getting in better shape before I try working there.  So I resigned.  I really didn't feel comfortable my concerns were not address.

I haven't given up looking for a part time job either.  There is something out there that can help me financially, physically and yes, mentally.

Thanks for reading this, I am in a better head space now.  Time to go have some breakfast and vacuum.

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.