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.

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.

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!!

Why I Don't Look Up to Celebrities Who have/had Cancer

I really shouldn't watch some TV shows.  Why?  They make me think more.  They make me question.

Well, what does that have to do with the title of this?

Celebrities have money.  Rich and famous people.  I don't wish cancer on anyone, but I would rather hear about the construction worker making ends meet, dealing with cancer, or the mom that over comes cancer and still goes on.  People like me.

People going through things I have and beating it.  That gives me inspiration.  Not some famous actor or actress that gets paid hundreds of thousands of dollars to do a show or movie.  Not some rich Silicone Valley big wig, or even anyone on Congress.

It was either 60 minutes or 48 hours, they did a segment on cancer.  It was a fluke I ended up watching it.  Actually, I have seen a few stories along these lines.

The story was basically about treatments available, insurance, and money.  The all mighty green back.  The bane of the terminally ill.

They did a few interviews.  One was a normal person, like you or I.  Worried about how they are going to pay bills, insurance, co payments.  The hope was dim.

The other family was rich.  Their son has cancer.  Being treated at the best hospital.  The reporter asked how they were dealing with their son's cancer.   Does having money help?  Their answer?  Yes it does.  It opens more avenues of treatment. It allows for better treatment.  It gives more hope.

Huh, even they realize it.  So I'll pass on the celebrities, and admire folks like me.  Folk I can identify with.  Don't get me wrong, celebrities can help with education, some people will only listen to them.  But me, I'm for the "normal" guy.  Let me hear their stories.

Then I got caught up with a show called The Resident.  Yeah, it played right into the if you have money you have a better chance.

I would highly recommend catching up on the show.  It is a show that is more than the normal hospital shows.  It gets into some of the politics of hospitals, like insurance company issues, how much per bed they want to make, shady dealings, you have to watch it.  Many different layers.

This one isn't very well written, but hopefully it gets you thinking too.

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.

Having a sort of rough day

I woke up feeling ok.  Actually slept through the night.  Got up only once!  Seriously for me that is amazing.  I try to drink plenty of fluid to flush out the drugs.

But still I am having a rough day.  I know it is basically hormones gone crazy.  Long lasting drugs have long lasting effects.

I felt ok, then I turned on the TV.  What a shock.  So much negative things going on, so many people needing help.  I say my little prayer for everyone.  It is a simple one, may the world and all it's people know healing, both physical and mental, have a roof, and food.  But most of all develop the willingness to try to understand one another, accept we are not the change and learn to work together despite the differences.  Oh, and for me, I'd like to win $100,000.00 after taxes and giveaway to others.

So why is it a sort of rough day?  Regular life seems over whelming right now.  Actually, I feel better than I did a couple hours ago, I sat outside and listened to the birds and watched Bailey and Sasha run and play.  It helped calm my mind and emotions.

Still a bit overwhelmed.  Just by things that need done, lists that need completed, budgeting, needing a job.  I don't think the fact my left foot/leg still is swelling and aching.  They can't figure out why either. I don't think the limpy gimpy helps the job hunt.

A woman I know of (because I know her children) cancer is back.  They are draining her lung today.  I pray it goes well and somehow it goes away for her.

So many people with cancer.  So many with it coming back.  It is overwhelming.

I am stressing over health insurance too.  Cost.  It is going to go up, I know it is.  Do I stay with the Cobra for one more year or try for Medicare?  Social Security said, "OH, you are disabled!" but the disability payment doesn't start until December.  No back pay either.  You have to be out of work for 5 months.  The whole thing is a pain in the ass, but something is better than nothing.  And unemployment doesn't cover because of the disability.

Oh, and folks, just because someone gets disability, don't assume it is easy street.  If I pay for health insurance the mortgage/rent is short, or visa versa.  Not to mention other things like electric, water, gas, car insurance.  The only reason I say this is because of a comment someone made.  Oh, so you won't have to worry about anything once it kicks in.  No, people still have to worry, and scrimp and save.  So do me a huge favor, the next time you hear someone is on disability, have a bit of compassion for them and say a little prayer that somehow things work out for them.

Ultra sound showed no clots.  X-ray of the knee show a bit of arthritis.  X-ray of the foot and ankle showed a heel spur, which I had no idea was there, and some arthritis, which again I didn't know was there.  The top of the food aches and sometimes it feels like it is burning.  Oh, and the skin on the one side is sensitive.  You know the kind of sensitive that when you touch it is sorta hurts, but you touch it again just to make sure you felt it right?  Yeah, that kind.  You can't help but touch it.

Oh for the record, yes I did eat breakfast, so my off day isn't because of that, no I didn't drink as much water as I normally do yesterday, but I am no dehydrated.

Maybe it is just that damn achy foot.  After a while it can be irritating.

I think I am going to take a nap.  I feel tired.

Speeding Thoughts & Emotions

Wow two in one day.  Amazing isn't it?

I have had an issue with attention deficit for a long time.  I have always dealt with it with lots of caffeine.

It was easy to do as a kid.  My parents made coffee in a coffee urn.  Like a twenty cup one.  They would drink the coffee all day.  Yes, cold.  And guess who was the one that got to go get Mom or Dad's cup of coffee? That lead to me just drinking coffee whenever.

Still love coffee, and have developed a taste for fresh roasted beans, Guatemalan, Peruvian, and Columbian.

Always have had several different thoughts going through my mind at one time, always the one with several projects that seemed like chaos that magically came together in the end.

Yes, there is a point to this.  I have a hypothesis about the new chemo.

Now you are sitting there thinking ok, get on with it what are your thoughts.

My hypothesis is that the Yolandis exacerbates the attention issue, the thought process, and the emotions.  Along with insomnia.

I base it on my morning.  I went to meet a Lawn Contractor to get a quote for Raines Court (no I do not own it, I am trying to help by getting quotes and over seeing work.  I am too old to do this stuff, and physically, not capable to do some of it.)

The Southern Wind Landscaping owner actually called asking if it was ok to be 10 minutes late.  Wow, that is amazing for a contractor.  Apologized when he got there.  In the mean time I was talking to the General Contractor working on the interior.  He speaks English fairly well, but since my mind started racing, and the emotions running like nuts it was not the easiest.

Oh I wasn't nasty or rude.  I knew that the body chemicals are havoc.  But when that happens even the simplest thing turns into a HUGE mountain.

The lawn issues are addressed, and the removal of the wild bushes addressed.  Made me feel better. But then I started making my list for the trip to Lowe's and knowing I need to address items that weren't delivered back on the 18th of September, and I have been going back and forth with them started up the emotional roller coaster again, along with speeding up the thoughts.

Armed with my list, the light that was too big I needed to return and get the smaller version, and information on the order with item numbers of the missing (for the record two toilets and a florescent fixture).

I got to Lowe's at 12:30 left there at 1:30 give or take.  I swear I felt like I was there for three hours, going back and forth from feeling ok to wanting to burst into tears because the toilets weren't delivered.  Never mind trying to keep one thought.

While customer service dealt with their two different systems, once which was down, I rushed here and there grabbing what was needed.  Replacement light, board, outlet covers, floor vents.  Literally I was feeing so stretched out and frazzled, and again wanting to burst into tears.

I kept thinking I cannot wait to get home make ice coffee, sit on the deck and put the gimp leg up.  I grabbed a Gatorade (I crave orange Gatorade when I go through chemo, no idea why.  Never craved anything during my two pregnancies, but I do remember feeling so starved I ate something like 10 hot dogs, give or take).

Got all the stuff to the contractor, he is there working his butt off, amazed that I got two toilets in my car.  He unloaded the car, and I came home.  While I was taking a bag out of the car, I started to calm down.  Which made me start thinking of how this has happened a few time since chemo.  Coincidence?  I don't think so.

All the while I wanted to stop and do a post about the way I was feeling. How things flew through my mind.  The bursting into tears I think was from the frustration of the thoughts flying.  If I could work as fast as they were going, I'd have a spotless  house in an hour and a half.  The one thought I did hold on to was I do not want to just burst into tears.  Not for no reason.  I can't remember the last time I did cry, a real sobbing cry and that is what they would have been.

I can be very grateful, I haven't felt the sadness that comes with those heart racking sobs.

At the moment things are normal in my head.  I am having coffee, and I am going to sit on the deck, listen to a book and look through pictures.  The house still needs cleaned, and my car needs a bath, oil change and the such, but I think the emotional roller coaster I put myself through earns me the afternoon off.

And yes, I am going to talk to Dr. Vaughn when I see  him on Oct. 11th.  Hell, I didn't get mood swings when I went through menopause.

I feel like me.  And that is what counts.

Time Awareness

Since 2003 I have been more aware of time.  I mean when you read in your medical records that they had to resuscitate you during an emergency surgery, it makes it more time aware.

But like most people, during the years the of time's passing, faded into the background.  I was still more aware of it, but over the eight years in between bouts of cancer, it didn't stand as far in the foreground.

immediacy

Even with the recurrences in 2011, 2013, shit to be honest, I don't remember the years at the moment.  Only that there have been a total of six bouts (counting this one).  Time kept marching on ticking, and I kept the awareness in the back of my mind like a whisper of a distant memory.

Yes, I took on things I wouldn't have normally, well, I would have but not put them off.  Jumping from a perfectly good plane for example.  Realizing I really do like to camp.  Taking more joy and peace from the simple act of having coffee on the deck, to the smells of fall.  I was more aware, but not time aware.

Even when they discovered the cancer spread to the colon back in May, and I first heard the word terminal, my time awareness wasn't in the foreground.  It crept closer to the front, but stayed in the hub bub of my mess of a thousand browser tabs opened mind.

When I talked to Doctor Vaughn and asked about approximate time frame.  He got this look on his face (he really didn't want to label it) he said 12 to 18 months.  He encouraged me to start racking up the credit cards and living.  Same thing that Doctor King did in May.  I really don't think that is a good sign. (And I don't think they realize that being unemployed with  no income, makes making minimum payments a bit difficult, borrow from Peter to pay Paul.)

Time Awareness came to the forefront, saying I have always been here, you have listened, but not as you should have.

So a "Fuck it" trip was planned.  Roma, Napoli, and Paris with my son Jim, my daughter Jasmine, and Jim's girl Liz.  I really wish Liz could have been with us the entire trip.  It was amazing.

My younger sister Addie, came to Virginia to give me a hand.  Right after getting back from Europe, literally the next day, I started a new chemo treatment.  Wasn't my brightest idea.  And I started having problems with my left leg, the one with no hamstring.  She left on Friday, and Saturday Jasmine came down.

What adventures did my sister and I go on?  Running to Home Depot, Lowe's (I am not doing any home remodeling - that is a story in itself) , eat, and watch the Twilight movies.  Not that I ever wanted to see all of them, I mean, whiny girl, meets whiny guy, who is a vampire and you know the rest.  But the point is I enjoyed it because of the company of my sister.  Watching movies is something we never did when we were younger, and that simple thing made a great memory.

Yesterday while Jasmine was here a friend of hers called, she was telling Rachel about the trip.  The dancing joy in her eyes, and in her voice, the laughter when she told her about the "work of art donation" made me smile.  I loved hearing her point of view of it.  It made me happy to hear her joy and the memories.

Time Awareness, my new best friend kicked in; big time.

Insomnia last.  Really bad.  Everything I want to do ran through my head, things I need to get done, things I need to organize.

You are thinking, what new adventure is she trying to put together on a budget of air, smiles, wishes and dreams.

No, I am thinking of calls I need to make, appointments I need to make, what house work needs done.  How am I going to get the weeds in the back pulled, blowing the leaves off the patio.  Power washing the patio.  Cleaning the house.  Cleaning and detailing my car.  Taking my car for an oil change, tire rotation, inspection. What little projects in this house that need completed. Pictures I need to go through, what ones I want to get on glass, what ones go in a book. Posts I want to do.  Not one thought was for what is my next adventure.  Just everyday things.

Unloading the dishwasher, thinking I need to be doing this, then that.  Being so aware that time is marching on, and things that need done aren't done.

Ok, now you are saying don't worry about everyday things, but here is the thing, a very clean house is important to me.  Making sure a project gets done right is important to me.  Paying bills (although it is borrow from Peter to pay Paul thing) is important to me.  Shit, I'd like to have a job, but so far that isn't working out.  So for me it is what income?  Oh, and start an art project and maybe even find a gallery to have a show.  Art by the terminal or some shit like that.

They aren't huge things, but they mean something to me.

I feel time slipping away.

Everyday things in life have taken on a new meaning to me, and time is marching on.  Time is marching on and I can't stop it.  Cancer is going to kill me, and every day I am becoming more Time Aware.

Tick tock, tick tock, life is slipping away.

Are you Time Aware?

Please feel free to share your thoughts.

Living with an Expiration Date

In reality, we all live with one.  The difference?  I have an idea of when, and what will cause my ending.

Most days, I don't think about it.  Honestly.  It doesn't accomplish anything.  Neither does getting all depressed, crying and railing against it.  Doesn't help.  Don't get me wrong, I want to live, and I have said it before, I will fight.

It can be a bit frustrating in reality.  Seriously, what does terminal look like?  I think many people expect to see me weak, frail, wobbly, can't do things.  For now that isn't the way I am.

I am thin.  Last time I weighed myself I was 104 pounds.  Less than when I graduated high school.  I am not weak, well, I am working on strength.  Yes, I get winded.  Side effect of the chemo, and having only 1 1/3 lungs, along with a tumor sitting on the lung.  Working on the lung capacity too.

My oncologist told me to do things I want to.  To live.  He is all for me working out, as long as I don't over do, and mind what my body tells.  As long as I have good counts, I can do things.  When the blood count crashes, well that is when I go into hiding, or the hospital.

So for as long as I can, I will do as much as I can.  Including work.  Got to keep the roof over the head, utilities paid, and fund those bucket list things. (Right now I am smiling and laughing, I do have one long list.)

Many think I am in denial when they hear me talk, I am not.  I know that as time goes on, I will not be able to do as I do now.  I know my body will betray me, will become weaker (one reason I want to get in much better shape, the logic is that the better the shape I am in, the longer I put off the betrayal - even if it isn't true don't tell me.  This is an illusion I need.)

Yes, I need an illusion.  I think all people do.  The difference is I realize that I know it is one, but there is that slim chance; but I think that may be with all illusions.  I will have to ponder that.

Please don't get me wrong.  I know I need help.  But I need to feel independent now.  As time goes on, I will need more help.  Help with cooking, house work, driving places.  But for now, I need my independence.

Walk with me while I am independent, encourage me.  Travel with me.  But if I need that quiet alone time, realize it has nothing to do with anyone, or this journey I am on.  I am that introvert that needs quiet and alone time to recharge.

Now go seize the day.

An Attempt to Explain Me

I am an introvert with extroverted tendencies.  I know that is a real oxymoron.  But it is the truth.

To be honest, I have always been that way.   I remember being a kid and wanting to be the one to be picked first for teams or special projects like speeches at assemblies.  While I wanted to be picked, inside I was terrified to be picked.  I was the one that would climb trees and hide from people.  The solitude and beauty of being high in a tree always brought me peace.

When I was honest with myself, I really didn't want to be the one picked.  But when I was I would suck it up and pretend.  Acting like I wasn't scared or nervous became second nature to me.  (Please don't jump to conclusions like I am afraid of the cancer and outcome.  That is the one thing I am not frightened of.)

I learned to control that introvert part of myself.  Became an adult, I was in such a hurry to grow up!  What was I thinking?  Job interviews, those horrified me.  Now phone interviews terrify me.  I'd rather see who I was talking to so I can read the body language.

When I started the shelter, I never thought about becoming someone in the public eye.  It wouldn't have happened if I did.  I saw a need and wanted to make a difference.  I remember thinking I could do it all on my own.  Educate people, work a full time job, fund raise, take care of the animals.  I had my shining armor on and rode my white charger, I was going to make a difference, all on my own and not in the spotlight.

I soon found out I was wrong.  I ended up doing public education, doing interviews with the media, needing help with the shelter, actually looking for volunteers, facing my introvert fears, and swallowing pride, I was asking, sometimes begging for help.  My pride was swallowed, my armor dented and dull, my white charger ran off.

So many things started happening that I couldn't control.  Oh, yeah, I do have a bit of an issue with control and ownership issues.

In 2003/2004 I would never have made it mentally, the shelter wouldn't have made it financially (neither would I) if it were not for people who were willing to help.  It was a difficult time going through the chemo, radiation and surgeries.  Learning to walk again was a trip.  Well if you have to go to the bathroom and you are on the first floor - the bathroom on the second, you find a way to get up those stairs. Amazing what having to pee can do.

Fast forward to now.  I am still introverted.  I actually do have to gather myself to walk into the gym.  (Yes I started working out, doctor encouraged too.  I figured the stronger I make my body, the better chances of a longer life, I need a trainer, :D )

There have been so many things going on that I can't control.  Contract not being rebid, so I lost the job I had; and as much as I would complain about it, I liked it.  The cancer coming back.  It tends to bring out the introvert so I can sit in the quiet to think and look for a job.

One of the reasons I like camping is the fact during the week it is quiet, I am removed from everything, all I have to do is enjoy nature, cook, play with the girls.  I am removed from the house and the feeling like I should be doing this that or the other thing.  I am alone.  It is hard to explain.  It is peaceful, and centers me.

Now I am still that prideful woman.  I want to do everything on my own.  I want to show the world I can do it.  It is very hard, just about impossible to ask for help.  But that is what I am doing how.

Help me spread my story.  Help me educate people about what it is like for a regular, working stiff that lost their job deal with being terminal; having an expiration date.  Get people thinking.  Help me educate.  Help me help others with cancer that there is more than just the diagnosis and prognosis.  Help me let care givers know that we with cancer know it is extremely hard on them.  Help me help friends and families know that  we know it is difficult for them, they don't know what to do.  Just don't disappear.  Help me help other cancer patients with my type of pride issues to realize they can ask for help.

I need my family and friends.  I need help.  What type of help?  That depends.  Sometimes I just need to talk and work things out.  Sometimes I just need someone to sit and have a glass or two of wine with me and laugh.  Sometimes I need heavy things moved.  (I do ask) Sometimes I need to escape my reality.  I am not the best communicator (isn't that funny since I spent the last 8 years in communication)   I hate the phone, and to be honest over the past year of job hunting, the computer isn't too popular with me, mainly because the amount of time spent researching, well that is my hypothesis.  I know I can't do this on my own.  But please understand I do need the quiet time to recharge and reflect.

I love my friends and family.  I really do.  It touches my heart more than I can express how they try to find treatments that will keep me around.  They really want me to live to be an old crotchety lady.

Been doing some thinking, and I am going to call Doc Monday and tell him to see what it will take to get my on the Yolandis.  It is a once a month 24 hour chemo - and it is derived from the sea sponge, natural chemo!

He would like to keep me on Lavutro for another three months, but, I don't know.  The more I think about it, I mean, the tumor in the colon developed while I was on it.  I don't think that bodes well.

The flip side to this is, as long as I can afford it, once I do the chemo, the girls (Sasha and Bailey) and I can hit the road for the rest of the month if I wanted to.  Three to three and a half weeks on the road.  I'd have to get back once a month.  Seriously sounds better than my schedule now.  Even though the chemo schedule I was on a couple of years ago seriously blew chunks.  Both literally and figuratively.

Right now it is Thursday, Thursday, off, Thursday, Thursday, off.  So during a month 3 out of four Thursdays I am getting chemo.  It is akward too.

Once a month is much better.

The story

My sister asked to write my story.  It isn’t an easy straight forward story – there are the major happenings, then the little stories that layer in between that makes the larger event bearable.  I will try; but in trying stories of love and support, will be there between the lines. They too are important.  I am so grateful to those people who have helped and continue to help me.  I apologize for not detailing your stories.  I am limited to 7500 characters.

You have cancer. That is something no one wants to hear one time.  I have been told that six times.  Sarcoma, rare.  Lucky me. The head of the Pathology Department at the Mayo Clinic – asked to keep my biopsy slides to use in his teaching.  Is it weird that made me happy?  (My cells are helping to teach!) 

I hate January.  Seriously, I do.  It seems that every time I was “officially” told I had cancer in January.  Since January 2003 I have been beating the odds.  At the Cleveland Clinic I was told that the cancer could kill me, and if I survived, there was a 1 in 500 chance of it returning.  I laughed and said, “Well, that means my chances of it returning are better than winning the lottery!”.  Let me explain, I have a warped sense of humor, always have.  If it has to do with me it is open game to me.  If you can’t laugh at yourself, who can you laugh at?  I actually have laughed plenty during this entire venture with cancer. 

Since January 2003 I have lost my left hamstring, right latissimus muscle, lower two thirds of the right lung, half my liver, a third of the pancreas, duodenum, gall bladder, part of the right pectoral muscle, a scoop of the right quad, several feet of lower intestine, a couple feet of small intestine, part of my stomach, and had several skin grafts (By the way when they fail you smell like a corpse.)

January 2003 my journey began at the Cleveland Clinic.  Biopsies, the doctor “officially” telling me I had cancer. 

I went through the MAID chemo and radiation.  Very difficult chemo.  Chemo brain is very real.

In 2008, I was offered a job in Virginia, as a contractor working on a Marine Base.  I passed the magic five-year mark, and time for change.  I turned over the shelter I founded to a wonderful group of people, and moved.  (For the record, I really loved my job.  The work was meh, but the people were awesome!  Loved working with Marines. They have warped sense of humors too.

Divorce in 2010, cancer returned in 2011.  Right lung, lower and upper intestine and the right pectoral muscle. I now have a basis for the worst pain you have ever felt in your life.  It is either having your abdomen sliced open from under your rib cage to the pelvic bone, or having your sternum cracked open.  Either way, it rates a 10.

2013 -  Whipple surgery was done. A Whipple is a surgery that entailed removing the following:  part of  my stomach, duodenum, part of the pancreas, part of the liver, the gall bladder, and several feet of intestine. Basically, they rearranged my digestive system. I always have Zofran because eating nauseates me.

2014 -  Right thigh. Attached to the quad. This one was actually one I laugh about.  No chemo this time – the basis for this decision is the fact it nearly killed me last time.  A day surgery, they went in scooped the tumor out of the leg, discharged by noon then I went to lunch with my son at a local Indian restaurant. Surgery was a Tuesday, they told me I had to take one day off work. I took Wednesday off, and I was bored.  I was back at work on Thursday.

March 2016.  The left lung, my GOOD lung. It was small. No chemo if Doc got good margins. Doc got good margins. I had surgery on a Monday. I took Monday, Tuesday off and you back to work full time Wednesday.

I actually thought that the worst of 2016 was done.  It was a bad year.  During the spring the company I worked for told us that they were not going to bid the contract they had with the Marine base I worked on.   I started looking for a job.  The contract ended at the end of July.  Job hunting started in earnest.  I picked up a couple of small part time jobs.  I need a job with good health insurance.  Right now, I am unemployed; but I am keeping the COBRA insurance paid for!  COBRA was cheaper than Obama Care, and better coverage!

November 2016, I started feeling like an elephant was sitting on my chest. December, I was in the ER, hospitalized, they thought they saw fluid in the lung they tried to drain it. It didn’t work. Surgery was scheduled for December 18. They  discovered pockets of fluid on the lung and surrounding the heart hiding tumors. They removed the fluid and debulked the tumors.

January 2017, a Saturday at 8:00 AM. I got a call from the doctor with the results. The cancer was back, and it was in fatty tissue surrounding the heart, actually it is on the upper aorta, and lymph nodes. My oncologist got the insurance company to approve the new anti-body treatment that was rushed through.  I am the first one in the area to get the treatment.  It was rushed through FDA in October of 2016.  February, I started LARTRUVO and doxorubisin.  Weird hair loss, fatigue, nausea, shortness of breath, side effects. 

I finished the original six cycles.  I had a PET scan done, the cancer on the upper aorta and lung seem to be stable.  However, a new tumor developed in the colon, while going through chemo.

Surgery isn’t an option unless it becomes a blockage.  It is too dangerous.  I’ll keep doing the Lartruvo for the next three months, along with CT scans to see how the colon tumor reacts.  If there is no reaction or growth, we will try the Yolandis.  Yolandis is derived from the sea sponge.  I have a feeling that Doc is going to have to convince the insurance company to pay for it.

June 29th was the infamous talk.  Optimistically my life span is expected to be 12 to 18 months.  My doctors (oncologist and surgeon) are encouraging my to do my bucket list.  (Yeah, that cost money and I have to pay for my insurance, and I am still unemployed – not for lack of trying.  Yes, I am still looking for a job.)

I always knew that cancer would be my end.  Just not ready for it.  Going to keep fighting.  But as the doctor and I talked, we both came to the conclusion I will fight, but I do not want to do the really harsh chemotherapies.  The quality of life is an issue for me.  Back and forth to the hospital.  Feeling half dead, not wanting to enjoy the simply joy of sitting on the deck.  I’ll fight, but quality of life really is important.

I want to see friends, make memories with my two children.  Get some bucket list things done – things drive across the USA and camp at the National Parks with my girls (dogs) in a 4 door Jeep Willey (my 2004 Malibu with 160,000 miles wouldn’t handle it.) Visit friends while driving the country. I could keep all my camping equipment in it and just randomly tell my dogs to jump in and lets go to the next National Park. See Stonehenge and touch it.  See places my roots are from.

I want to make a difference to people as I do a bucket list – lots of random acts of kindness anonymously.  (I do those now, but would love to do more) Make sure all the bills are paid, make sure final expenses are covered.  No life insurance.  Nothing to sell.

I don’t know how I’ll do it, but somehow, I’ll find a way, I hope.

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.