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.

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.

Hearing "You have cancer", and a Burning Question at the End of this.

To be honest I laugh about it now, and to be honest, I laughed about it then too.  Then is the first time I was told I had cancer back in 2003.  Come to think of it, every time they told me it was back, didn't freak out either.  I don't think that is normal.  Could I be off my rocker?  Well, I don't own a rocker so yeah, I could be.  But I don't think so.

I mean really, in reality I already knew.  A lump on the back of my left thigh grew from a golf ball size to about a cantaloupe well, it is kinda obvious.  Then having the manager of the store you are working at notice your leg because the left pant leg was getting tighter on the thigh helped, she actually threatened me!!  She told me if I didn't go see a doctor the next morning (I worked 2nd shift) I shouldn't bother coming in until I saw a doctor and had a note from them!

Well, me being me, and just getting insurance, I got my fat butt to the Urgent Care on York Road.  They told me put one of those wonderful gowns on, and when the doctor came in she asks, in a rather bored, condescending tone - "What is the matter?  How can I help you?" I just stood up and showed her the left thigh, OMG, when I turned around I was looking in a mirror, and her face just dropped. "You need a specialist.  We will find one in your network and make the appointment for you as soon as possible."  Well, if that doesn't all that doesn't give you a clue nothing will.

No, I didn't cry or scream or ask "why me", each time I asked, "OK, what are we going to do, when do we start, don't sugar coat crap, and be honest.  I don't need the kid gloves treatment."

Luckily, all of the doctors I have and had understand where I am coming from.  I have no idea where I get my tenacity or strength as some people call it from.

Don't get me wrong, chemo is awful.  Even the "milder" chemo that people can take orally have side effects.  The antibody chemo I was on gave me 5 or 6 days of exhaustion right off the bat, killed the taste buds, nausea.  Still killed the bone marrow so red blood cell production was down,  white cell too.  Never mind it let the cancer spread.

The current chemo Yolandis (from the sea sponge) is every three weeks, and it takes a week to 10 fays to get back to an "almost" normal.  Side effects that get to me are rapid heart beat, like a pounding in your chest when you do just about anything, and interferes with breathing.  Sucks having sound like I ran a mile just walking up a set of stairs.

Right now I feel great.  My doctor changed my schedule to every 6 weeks rather than every 3.  Mainly just for the summer so I can enjoy as much of it as possible, and stay out of the hospital.  Though those two pints of blood may have just helped my system out a bit too.

Radiation in 2003 sucked a$$.  The burn on the back of my leg was purple, oozed, and burned.  I learned the hard way that Solarcaine does nothing but make the burn worse on radiation burns.  Trust me.

I dreaded having to get radiation in 2011 because it was on the sternum, bra and the such rubbing a radiation burn.  Guess what?  They improved how radiation is given and they can pinpoint it now.  My burn was the size of a dime!!

A challenge has been given me several times, and my response is "I will not go quietly into the night."

Now here is the oddity for me.  Whenever I have cancer, my nails grow.  I mean nails I can put polish on and have people compliment.  I do house work and do not baby my hands, but I have nails!  Every time I had cancer, my nails are awesome till I get tired of them and cut them off and they grown right back.

So why do my nails grow so well when I am given such nasty drugs?  And why when I am healthy, not on chemo are my nails always breaking off or not growing?

I mean really!!

What does Terminal Look Like?

I am in a very interesting position.  I have cancer and I am terminal.  Yes, it is.  It is amazing to my how many people have preconceived ideas on what a terminal cancer patient should look like. Or for that matter what a cancer patient looks like.

There are many of us that do not fit those preconceived ideas, we almost look normal.  Whatever normal is. I don’t fit into any of those preconceived ideas.

What do I mean preconceived?  Well here are a few thing I have people tell me.

People who have cancer and are getting chemotherapy are bald. 

No.  Absolutely not.  Chemotherapy drug are harsh.  They kill cells.  Both healthy and cancerous.  But not all people go bald.  In fact, there are some therapies put into use right now that actually help the patient keep their hair.  It is cold therapy.  Not everyone is able to use it, and it may not work for as well for every patient.  But for those who losing their hair would be horrifying, it gives them options.  Some people only have their hair thin out.  One year my eyelashes fell out along with all my hair.  That was hard to deal with.  I like my eyes.  My eyelashes are my vanity.

That was my experience with the antibody chemo therapy - thinning hair.  I hated it.  I’d rather be bald.  I kept my hair buzzed. To me it is better to be bald rather than have balding spots or thinning hair. 

All cancer patients are always sick and vomiting or at least nauseated.

When I went through cancer in 2003 I would have said this is the truth.  But over the years they have made huge leaps in anti-nausea drugs. 

Don’t get me wrong.  We still, well not everyone, but I still get nauseated.  But the anti-nausea drugs work wonders.  There are even what they call “break through” anti-nausea drugs.  Basically, they are a medication you take when your normal medication does not stop the nausea, and you feel like vomiting up dinner from last year.

Cancer patients don’t eat. 

Well, the further on in your chemo, some may not want to eat.  Some don’t eat early on because of sores that can developed in the mouth and throat.   Believe me when we feel like eating, we eat.  Mainly because we know there are those days we don’t feel like it, or will feel like crap.

I have days when every couple of hours I am eating something.   Doesn’t matter to me healthy food or not.  Calories.  That is all I am trying to get into my system. I know there will be days I don’t want to eat, or eat very little.  So, when I can I do.  My body will store it and when I need it I will have it.  Unfortunately, there never is enough stored.  

In fact, once this is published, I am going to have pumpkin pie.

All cancer patients are extremely thin. 

Um.  No.  Depending on the treatment, and the amount of steroids given.  Yes.  Steroids are routinely given to cancer patients.  Helps with some of the side effects.  Unfortunately, because of the different body types and reactions, some people swell up.  For those patients it is heart breaking.  I have no idea why it happens.  It just does.  

Not all patients are deathly thin either.  Some may get to that point later in treatment.  But not all.  Everything depends on the drugs used (if they treat with drugs) and again the body’s reaction.

All cancer patients are tired all the time. 

Well, there is some truth in that.  But not 100% of the time.  Depending on the chemotherapy, and cycle, a patient can feel exhausted one week, tired the next, and almost normal the following.

One of my treatments a few years ago was the MAIDS treatment.  Chemo for a week, then two weeks off during which I received radiation therapy.  First week I felt like crap, second better.  When the time for chemo came around again, I felt pretty normal.  Later maybe cycle 4 or 5 I would be tired.  Exhausted all the time by cycle 6.

Terminal patients look like the dead walking. 

Well, maybe nearing the end, and some prior to but not all.  Just because I don't look half dead doesn't mean a thing.

Cancer patients are sick all the time or should always wear masks and stay away from everyone.

Not all the time.  We are more susceptible to getting sick if the chemotherapy kills off our white cells, or interferes with the production of the red blood cells,

Usually when that happens, we end up in the hospital, but not all the time.  A couple of times my blood counts were way down, but I felt fine, even felt almost "normal". 

When the blood counts are normal for the most part we are normal.

Cancer patients are always depressed.

No.  Not all the time.  Yes, there are times we get depressed.  It is only normal.  It gets tiring having blood taken, running to the doctor, treatments, hospital visits, MRIs, CT Scans and the such.  

I prefer to laugh and go out and enjoy life, but yes, even I get depressed once in awhile.

I am terminal.  For six months I received anti-body chemo therapy. Every other week. My hair got thinned out, so I buzz cut it.  I’d feel good the day after. But then for about three days I’d be tired.  The further along in the cycles, the longer the tiredness lasted.  Lack of appetite usually comes from the way chemo affected the taste buds.  Everything ends up feeling yuk, and tasteless.

We have changed my chemo to Yolendes.  Sea sponge derivative.  I have had one cycle.  I get chemo for 24 hours.  I go home with a working pump, go back the next day and have it removed.  The day after I feel good.  Again, those steroids.  The third day I start feeling, sick.  Like a cold or flu.  Then it gets worse for about three or four days.  Gets better after that.  Exhaustion so bad that getting out of bed is a feat in itself.  Eating?  No thank you.  Drinking?  Sipping water every so often but not enough.

Chemo affects the production of white blood cells.  When I was on the Anti-body I got Neulasta.    I prefer the Neaulasta and its issues to the shots.  Nupegen shots burn like hell.

They skipped my second round of chemo with the sea sponge.  Because the chemo made my white cells crash.  If you do not have a good blood count, they don’t do chemo.  They would be endangering your life if they did.  I assume it is the same way with all chemo.

I spent a few days in the hospital because of pneumonia, and it was after chemo.  The doctors at the ER were spazzing out  because my counts kept dropping.  I kept telling them it was the chemo treatment.  They finally decided that a blood transfusion would be a good idea.  They actually do help.  Bumps up the red count.  

I get told you can’t be terminal.  You look good.  Your skin is in good shape.  You don’t look sick.  I have had three weeks to recover from that treatment, so I look better.  The further into treatment I get the longer the side effects will last, and I will end up fitting that image people have of terminal. Well, maybe.

But I plan on doing things my way.  Treatment is to slow the cancer, or keep it in place.  It won’t cure it.  I am going for the quality of life.  If the chemo lets the cancer spread.  We are onto the next one.  If the time spent recovering becomes longer, or my system starts crashing and I end up in the hospital more, the treatment changes. Or I just stop chemo totally.  Boy, then I will end up fitting that image.

Please, just because a cancer patient doesn’t look like a dead man walking, don’t assume they are lying, or exaggerating.  Just because we laugh, and joke and look strong, don’t assume.  Cancer patients are great actors and actresses.  I know.

The Adventures of Yondelis, the sea sponge chemo

Actually I finished cycle two.  The first cycle I thought I felt so crappy because of being exhausted.  Nope.  This time it kicked my ass.

I got hooked up on Thursday Oct.5, went home with my buddy the pump, felt ok, Friday felt normal.  Went about my day, got the pump taken off.

Got up Saturday, and felt a bit yucky, but wanted to check out Toastmasters.  You know push the comfort zone thing.  I didn't make it through the whole thing.

About 15 minutes after I got there, I started feeling dizzy, and nausea kicked in hard.  Went and sat in the refreshment room, downed some Zofran, still felt like crap.  As soon as I felt ok enough to drive home, I did.

I spent three day in bed.  If it weren't for the dogs, I would have just stayed in bed.  I would get up let them out, back to bed, get up feed them, back to bed.  And I had to really push myself to do that.  My body was beyond exhausted.  I was sipping water which just nauseated me.

When I did get up, I to let the girls out, I'd open a can of soup, drain the broth into a cup, warm it, sip it, and leave the cup and can on the counter.  Seriously disgusting for me. 

I'd wake up and say I have to get up; my body said like hell.  I'd fall back to sleep, just to be on the hamster wheel.  I finally felt ok enough to get to CVS and get some ginger ale (craving it like crazy), pedalyte, and Gatorade.  I was getting dehydrated. 

Finally able to keep fluids down, I started sipping as much as I could at one time.  Trying to increase it a little every time I took a couple of drinks.

I saw my doctor yesterday, we are going to stay the course with it.  After the third cycle, we'll see if the sarcomas are being kept in check or if they are spreading.  If they are in check, we will reduce the dose a bit to try to ease the side effects.

The joy I have to look forward to Oct. 26 or is it the 27th?

Random Emotions

If someone is reading this, I thank you.  I don't know if anyone really reads or pays attention, or even thinks about some of the stuff I write.  Opening people's thought processes and perhaps helping them view things in a minute change of light would be nice but, I don't know no one really says anything.

Don't expect a happy, serious, uplifting, courageous, point of view of knowing I am dying.  No laughter this time.  At the moment I don't have any to share.  Lots of people with cancer will get to this point at one time or another.  Maybe it just took more for me.  OH, and please if you are offended by cussing, well, you may just want to pass this one up.  This will be one that is raw emotion, no filter.

Had the 24 hour chemo Thursday.  Took the pump off Friday, felt pretty good.  Woke up Saturday, feeling ok, kinda rough, but gotta live life.  I went to a Toastmasters, and was there maybe 20 minutes before I had to leave.  Sat in the refreshment area for another 20 minutes till I was sure I was ok to drive home.  Lost three freaking days to nausea and exhaustion.  I don't mean the sleep another 15 minutes.  I mean the type where your body says fuck you you aint' doing shit.

Anyone who has been to my home knows I like it neat and tidy, my oasis.  My idea of doing anything for the past few days was opening a can of soup, draining the broth in a bowl, nuking it,  eating part of it and be happy that I put the bowl and can on the counter rather than dropping it.

What does it mean that I am told I am brave?  Hell, I don't know.  I have no choice in the matter.  I pulled the short stick on life.  SIX fucking times.  Seriously, once wasn't enough, I just had to make sure that it was as bad as I thought.

Brave, yeah right.  Bullshit.  I would say I made this bed, so now I have to lay in it, but I didn't, life made it, but I still have to lay in it.

Graceful?  Courageous? Dealing with dignity?  How is that, someone please explain to me.  Because I laugh?  I have no choice.  Crying isn't an option.  Shit I remember the last time I really cried, and no one  that was around knew what to do or how to react.  Come to think of it, I don't know exactly how to react to someone crying.

So many think I have my shit together.  Or that I have my little ducks in a row.  Those little bastards are flying everywhere and shitting on everything.

I am going to die sooner rather than later.  Wrapping your head around something like that isn't the easiest thing to do.  Although, I have had since 2003 and several trial runs to do it.  Nothing like it is inoperable, and spreading to make trying new chemotherapy sound appealing.  Hell yeah, use me as your ginneau (shit I can't spell that) pig, I'll give it a go. Maybe the cancer won't spread!  You see the line rounding up around the building.  A huge line of one.  ME.  At least where I am.

Dying.  I don't want to die.  I want to find a fucking job and work, pay my bills, and make my children proud of me.  That is what is most important to me.  I want them to be proud of who I became, not the lost idiot who had no back bone I was.  I want them to have more memories of me that are fun and good.  I don't want to go.  Not yet.  I am not ready.  But it is something I have to face every day.  I have always been proud of them.  Even when I had my head up my ass.  I knew I did two things in my life right. 

I want my sisters to learn to communicate better, rather than the knee jerk reaction of lashing out when they think they have been wrongs.  Temper has always been a bad thing in the Caputo family.  Problem is it flares fast, and lasts.  They need to step back and ask, why did you say that?  Or at least think before they speak or type.  The hardest thing in the world to do.  You have no idea how many times I have typed something just to delete it after I calmed down.

All my friends I want to know that I am horrid at  communication.  Always have been unless it is the written word, and then I am bad because I forget to mail stuff.  The only person I ever was 100% jolly on the spot when mailing something was when Jim Sr. was in college.  I knew how many days it took a letter to get to him and back, and I would read each letter, write and run to the nearest mailbox with the soonest pick up.

Honestly, I am not ignoring you.  I think about my friends constantly.  I know actions speak louder than words.  To be honest, I don't have the words to express what friendship means to me.  I have always been that odd ball loner kid.  I quake in my boots in social situations.  I actually am introverted.  I hide it well.  Huh, I was that odd ball loner kid, and I am an odd ball adult.  Lately, it seems that I am living on something that is starting to become an island.  Everyone is moving.  One of the reasons I made myself go to Toastmasters, I am becoming that crazy lady with cancer and two dogs.  Guess I will have to see what Senior Activities there are.

Back to having my shit together and dying.  I don't have my shit together.  I am the most unorganized, lost soul I know.  (Please don't take the lost soul religiously).

I only started pulling my head out of my preverbal ass back in 2008.  I was becoming a person I didn't like.  Rescue can do that to you if you stay too long in it.  I stayed too long I think.

So what happened in 2008?  I got a call.  There was a job opening in BaseTel.  I said ok, well after I asked my ex, turned the shelter over to a great group of people who are running it.  (I literally stepped away, thick headed ownership issues).

Even got divorced in 2010.  Hope he is happy with whoever he is with.  Seriously.  Everyone deserves to be happy in this life.  As long as they are good to each other and good together.

Over the years here, I have paid off bills, helped others anonymously, even had a nest egg.  (Had is the active word here.)  I thought the worst for me was when the contract ended and I lost my job.  Been looking for one ever since.  Phone interviews, even an in person couple, but no job.

Guess I was wrong when I thought the worst happened.  Now I need to figure a way to get a job, pay bills, do chemo that makes me sick, afford insurance (car and health), keep a roof over my head and food on the table.  Not much.  People tell me not to worry about money.  Well, that is hard.  Especially when it pays for the things that keep you alive.  Even if the time is limited.  I think the one thing that all cancer patients worry about is money.  I couldn't imagine being faced with the possibility of being homeless and having cancer.  Even if you have someone you can move in with, cancer wears  on everyone, and you could soon become that anchor around someone's neck.

At the moment I don't feel as raw as I did when I started.  I've calmed down, there are still lots of things I need to address, but right now, I don't want to.  But I can't let that become a habit.  Not doing something.

Do me a favor.  In the comments section pick a number 1-52.  The first six numbers that are different I'll invest a dollar for a lottery ticket.

What will I do if it wins?  Pay bills, support sarcoma research, random acts of kindness to strangers, help family and friends.

Being Termnal or Having an Expiration Date

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

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

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

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

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

It is funny, cancer for me over the years is just a part of life. I always knew that cancer would be what will end my life. I have been beating the odds since 2003. I am good with my mortality. Came to terms with that years and years ago.

June 29th my doctor and I had a talk. The antibody chemo (first person in the area to get it) seemed to keep the sarcoma on the upper aorta in check, and the one on the lung. But, I grew a new tumor in the colon, and surgery isn't an option.

My reaction was, "well, damn, that means I am still stuck with all that excess skin on my stomach!!"  I saw my surgeon when the tumor came up on the CT scan, and told him if he and the oncologist agree on surgery, he better damn well do something about the excess skin, because that scar that runs down the middle of my body from the sternum to the pelvic bone allows it to sag on two side.  (I have a multi pack that is saggy).

We will continued the Lavutro treatment (antibody)until the week of September 12. Then we go to the Yondelis (trabectedin) chemo. Another new one!! It is made from the sea sponge.

I asked about longevity  (I think I told you all this, but I am not sure). Optimistically 12 to 18 months. We are doing treatments that are less aggressive. I want to enjoy life, and have no desire to be hospitalized every other week for blood count.

Like I said, I am good with it. I won't give up. But accept the strong possibility. The thing I have the hardest time with? Leaving my children. Yes they are adults, but I would prefer them not having to deal with it.

I actually feel guilty because I don't want them grieving or feeling sad because I am gone.  I know many people think I am being a bit silly or a worry wart. But in reality, what one thing that makes life mean the most to me is seeing my children grow as humans.  Seeing them happy. 

The other is random acts of kindness, but you have to do them anonymously.  Like the other day, I treated myself to dinner out.  Local greasy spoon.  Two fresh faced Marines, you can just tell they were fresh out of training, and there was an older couple.  Told the waitress to give me their checks, and tell them someone said pay it forward if and when they can.  Do not tell them who.  I finished my liver and onions (yes, I like it, but lately I crave it) and the looks of astonishment on the faces were priceless.  Or sending items or funds to rescues anonymously.  Or at the grocery store, putting money toward someone's groceries, or walking into the little food band and dropping off bags, then walking out without a word.  I like doing that.  I like seeing the faces (when I can) of people who are astounded that kindness still exists in this world. God knows we humans need to learn to be nicer to one another.

But in the mean time, I need to win the lottery so I can do lots of random acts of helping those less fortunate, camp across the USA, and get some bucket list things done. But I want my children to go with me and build memories.

Stepping Out of Your Comfort Zone

I think I explained before that I am an introvert with extrovert tendencies.  Well, I pretend to have extrovert tendencies.

To be honest, lots of things make me nervous as hell.  Mainly has to do with people, going into new situations, and the such.  I am terrified of looking like an imbecile.   Seriously, don't laugh.

Working out I am self conscious as hell.  No, it isn't a body image thing, and yes I started working out (maybe strengthening my body will help defer the expiration).  I work through my exercises thinking, well not thinking really, I try to block everyone and everything out.  Am I doing this right?  Of course I am.  But no one showed me, well I followed the pictures on the machine.

Oh man, when I go into a setting having to deal with a group of people, yeah, I just want to turn around and leave.  Again, I don't like feeling like an imbecile.  Even if I have a good idea of whatever it is, I get antsy.  It is worse when I am rusty on it.  Shit, then I think why the hell did I sign up for this in the first place.

You are thinking something like this "But she isn't afraid of cancer and dying?"  To answer you, no I am not.  I know my body, the signals, how it reacts.  Death is just a transition.  But dealing with new people on a one to one, or going into a group to deal with them alone?  I am quaking in my boots.

When I went to Bali a few years ago.  My first trip out of the country, alone.  Didn't bother me in the least.  I have no idea why.  Camping with my dogs, no problem.  I function very well independently.  Public stuff, not so much.

Now what brought this up again?  The following video.  I need to be more like that young man.  Talk about stepping out of your comfort zone and facing your fears!!  Bear with me and watch.  Once you do, you will understand.

After you watch the video, shut off the phone, computer, the whatever, and go outside, live life, laugh and maybe face one of your fears.  After chemo, I am going to.

This young man faces his fears  Click the link to see.  He is my new hero.

As the Chemo Drips

So much for posting an update quickly.  I just posted the update I did two weeks ago and sent the copy to my sister.  Yeah, I'm efficient like that.

First, let me explain something.  The fatigue that is caused by the drops in red cell count is telling.  It effects everything.  Your mood, thought process, your out look.  Not that I have had a negative out look, just getting tired of somethings.

I tend to be a bit more cynical and critical when I am tired.  A bit bitchier too.  What can I say - at least I am honest about it.

Life isn't perfect, hell, even when I am healthy it isn't, but it is my life.  To be honest, I was hoping never to have to go through chemo or surgery ever again.  But alas, that is not to be my fate.

One of the things that bother me is the fact this tumor is inoperable.  So chemo is my only choice.  It is on the heart and part of the left lung.  Well, I can't live without a heart or lung, so yeah, I'd say inoperable.

In the past I had chemo then surgery to get the tumors.  Or just surgery when the tumor was found soon enough.  No chemo when you have great margins.  Oh, and radiation in combo with the other two.  This time, there is only one.  Chemo.  What happens if the Navutro doesn't work?  There are other possible therapies.  But no guarantees on any of them.

One of the things I dislike is the, unknowing.  OK, is this making a difference?  Really, how do you tell except when the whole treatment is done and there are scans and xrays.   I had to have an echo cardiogram done Monday.  The chemo drug they are using with the Navutro causes damage to the heart, (remember in 2003 the Cleveland Clinic used another drug that damages the heart.  They used the maximum allowed for a life time) I was watching and you could see a difference in the texture on the bottom of the heart versus an area a the top.  They also used Doppler to show the blood going through the valves.  Color determined what was going in and what was going out.  I haven't heard anything, so I am going to assume no news is good news.

Admittedly, I do like the chemo schedule.  Once a week.  Two weeks treatment, one week off, two weeks treatment, one week off, you get the picture.  That one week no chemo gives your body a chance to try to recover.  Not long enough for mine.

I am tired.  So if I sound a bit negative, don't get in a panic.  If I get a bit over emotional, don't panic, I am tired.  Another 45 minutes and I am out of here.  I may stop for lunch somewhere.  I am craving sushi.

And before you all start, "You shouldn't eat sushi while going through chemo".  I know that.  So does every other patient that goes through this.  But you know what?  I'm eating it anyway.  I am past the point of giving a fuck about what I eat. 

In reality, I am going to die.  Maybe not this time, maybe not the next time but it will happen.  So, why should I not eat things I enjoy?  What is it going to do to me that cancer hasn't? 

If I were rich money wise, I'd be driving and flying all over the United States visiting friends, coming back for chemo, and setting off again.  I'd go to Tuscany and tour the vineyards, and eat lots of good food, go to Utah, New Mexico and where ever the winds blows.  But I'm not rich, so I can't.  but if they ever tell me I am terminal.  I am going to Tuscany, and a few other places.

I think I'll nap for the last bit of chemo.  I am tired.

Dance Six continues.....

Well today was the second treatment with the new antibody chemo drug - Lartuvo by Eli Lilly.   It was recently approved by the FDA, it was fast tracked.  Guess who is the first one in the area to use it?  Yep. You guessed.

I have to be honest, this is the weirdest chemo schedule I have ever been on.  Once a week.  Every other week is it different too.  Thursday is my chemo day.  Wednesdays are meet with the doctor and blood levels.

So last week, this was the list of drugs I got:
Decadron (corticosteroid hormone), Benadryl (yep through the IV), Aloxi (anti-nausea drug on steroids), Emend (another anti-nausea on steroids), Latruvo (antibody chemo drug), Doxil (nasty chemo drug), and Neulasta OBI (suppose to support immune system).  Five and one half hours. Long day.  Oh, and after the Benadryl you do get sleepy.

The two drugs with the most side effects are the Latruvo, and Doxil.  Head aches, nausea, diarrhea, constipation, muscle aches, chills, immune system crash, fatigue, oh yeah and hair loss.

Side effects I have been having, fatigue, head ache, the hair is going, nausea, the taste of food is going too.  Body aches too.  Basically for about four or five days after I feel like I have a bad case of the flu. I still get up every day and go to work. 

Oh, it just dawned on me, I work SEVEN (7) days a week.  And from working that much (20-30 hours at one job, 10 to 14 hours at the other) and I bring home about $800 to $900 a month net.  Life is interesting right now.

Ok, back to the chemo.  Today's treatment was the Lartruvo.  Did you know they fly in the medications the day before your treatment?  I was supposed to get chemo yesterday, but when I was about ten (10) minutes from the office I got a call, the plane the drugs were on had mechanical problems.  They didn't get here.  So they rescheduled me for today.  The total time I was there -  a little over two hours.  Right now I do feel tired and nauseated.

I'll admit.  This time I am a bit concerned about the cancer.  I mean, it is Stage IV (been there, done that several times) but it is on the heart and inoperable.  All the other times they could operate.  Even a couple they operated, and since they got really good margins, no chemo.

So why am I a bit concerned?  Well, if this chemo doesn't work, there will be another (new treatment just approved too) and if it doesn't work, there is another, and another.  I am concerned about having to continue chemo so long it exhausts me.  How many times will I have the strength to go through it?  When I am too tired, how do I face my family and friends?  Look, I am not giving up, but I have no idea what will happen in the future.

Oh, before I go, any woman going through any type of cancer should check out Cleaningforareason.org - they are a nationwide group that has volunteers that will come in and do a general cleaning to help you out.  If they have someone in your area, they will connect you.  There is a limit to how many cleanings, four (4) I think, don't quote me.  But even that helps.

If you don't need cleaning and want to help, they take donations, and may even be able to use your help. 

Time to feed the girls, and take a nap.  I really feel beat this time. 

The Story of a Tattoo

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Make sense?

Phoenix by Robert , Black Dragon Tattoo, Uraban, Md