Adventure since April - Or What I've been Doing with My Life :D

Wow. It has been awhile since I've posted anything. Sorry about that. I am a terrible poster/blogger.

Some of this maybe a recap, but I figured I'd start where things started to get "interesting".

Back in April the CT scan showed my small intestine folding back into itself creating a blockage, along with three tumors.

The doctor calls and tells me to get to the ER at Mary Washington. OK, so I go.

Apparently they already told the ER I was coming in because I was taken right away without the usual paper trail. You guessed it, I was admitted. Surgery was scheduled for Sunday. I believe I was admitted Friday. Now this was April, and the quarantine/isolation was in full swing. No elective surgeries, but I had one scheduled, made me think maybe this is serious. There were no visitors allowed at the hospital too.

They couldn't visit but they still stopped to let me know.

They got the blockage, along with the three tumors, apparently they were close to the blockage. I was left with the minimal length of small intestine you can survive with, and an ileostomy bag. Which for the record I still hate, and want to get reversed.

They kept me for two weeks? Maybe two and a half, made sure I could deal with the bag, and then let me go home.

After being home for a few days I started to feel like my old self, and started cooking, picking up the usual. I was starting to adjust to my "new" normal. Even was driving!

That lasted three weeks to the day of surgery. After losing a game of Catan to Liz, I felt tired. 9 PM seems to be a good time to go to bed anymore. They say you need less time sleeping the older you get. My hinny! I need more!

As I walked down the hall to my room I got a sudden sharp pain in the left side of my lower abdomen. Sharp, stabbing pain. I'm thinking I'll lay down and breathe through the pain. Yeah, right. Half an hour later I let Jim know I had to go to the ER.

Well, I couldn't walk because of the pain, and I would have had to go down two sets of stairs to get to the car. So 911 was called and the Stafford County EMTs showed up. They actually are able to "walk" the gurney down the stairs. They didn't carry me, the legs of the gurney extended and they "adjusted" as we went down the stairs.

I was admitted through the ER. My blood pressure was staying in the 90s so they couldn't give me anything for the pain. Once it hit 100/65 the nurse wasted no time giving me pain meds. You have no idea how grateful I was.

CT scan was done, I developed ulcers in my small intestine. They kept me and had me on all kinds of IVs. One was nutrition, another fluids, two others antibiotics. They had so many IVs in me, not only did they use my port, but had a pic line put in too! Which by the was took the doctor TWO tries to get in.

The ulcers healed, then something else "went bad", and we'd treat that. One episode the issue with the Vena Cava narrowing caused my neck to swell up do bad that I literally had no neck. I couldn't swallow water. I would choke on it. They gave me "super" steroids and the swelling came down, took a bit to get over choking on water. Then something else went. And they would start trying to fix it.

They were dealing with changing out IVs, my poor right arm was being stuck for the millionth time for blood, there was the nurse, assistant, doctors, vampire with a needle, and someone else in the room.

I was feeling weak, ill, crowded. I finally said stop. Enough. Just let me go. I was in bad shape and I knew it. But I was tired of everything, it all got too much for me. I kept saying "I am done, no more treatment, no more chemo, I am done".

Magically everything stopped. Blissful silence! The needle stopped poking my arm. I signed a DNR, they took all the IVs out. It felt like heaven. My poor left arm was so full of fluid that it was swollen and actually leaking through the pores! I was in really bad shape. I could barely walk two steps.

They got the Hospice folks in touch with Jim, and worked out getting a hospital bed, commode, medication, walker, oxygen and whatever else they thought necessary for me to be at home. Jim, Liz and Jasmine rearranged the bedrooms and house for the deliveries.

I got to go home in an ambulance. I've ridden more in them this year than I ever cared to. I was really worried about going home. Let's face it, I couldn't walk, if I took two steps I needed someone to lean on. I was worried that they would tell Jim to come and get me, and then he'd have to figure out how to get me up the stairs. But that was a worry I didn't need to concern myself with.

Once I got home they used the same type of gurney to "walk" me up the stairs and into my bedroom. I was worried that they would need me to get up and move myself to my new bed, but they said I was so tiny that they could lift me on the sheet. And they did.

It felt wonderful to be home. I felt tired. Sick, and emotionally exhausted. Oh, I started all this at 109 pounds. By the time I got back home I was down to 77 pounds.

My blood pressure stayed in the 80s. I was dizzy moving my head. I didn't want to eat or drink, I just wanted to sleep.

Hospice nurses came in, I was put on meds to help stimulate my hunger, one to help my sleep.

Jim, Liz, Jasmine and my sister Addie, took care of me. Made sure I got fed, made it to the commode, changed my bag, I was a mess those first few weeks.

Then slowly I started getting around with the walker, still dizzy, but making it out of the bedroom on occasion. Then it got to be more time out. Even had made a couple of trips as a passenger in the car. Right now I get around pretty good. No walker, I just take it slow. I spend a good part of the day at the kitchen island reading and surfing. Not to mention the naps I take.

I've come a long way, but it has taken close to three months to get where I am right now. It will be three months I've been home at the end of August.

I was talking to my nurse the last time she visited. She is amazed at how well I am doing. She told me when she first met me she didn't think I had two weeks left. I was that bad. Jim, Liz, and Jasmine didn't think I had long either. Shows you what being home can do for you.

Now I am trying to gain weight, adjusting to the lower blood pressure, building up strength. Just trying to get better so maybe I can drive again and maybe even get the ileostomy reversed. But that will take time. It took three months to get where I am, so I know I need to work on my patience.

And now you are up to date!

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.

Walking Through the Past - or Stupid Shit I Believed

Dealing with cancer gives you the opportunity to walk down memory lane, perhaps more than any one person would want to.  It can make you remember some of the oddest things, and make you say, "Huh, maybe that has a bit to do with how I am".

Now, I am not going to get into the "feel sorry for me"  or the "abused" story.  Life was not easy for my brothers or sisters, nor myself.  But that is past, and I have come to terms, a sort of peace if you will.  My parents did the best they could considering their lives, I determined to do better and end cycles.  Now I understand where some of my issues came from.  I have  no problems speaking about my past, but it is a different conversation.

BUT you know the stupid shit we were told, that some of us believed, now that is another story!!  So is the stupid shit we did.

I have not a clue what made me think of some of this, maybe part of it is trying to find the family tree.  It is spider webbing out in a couple of directions, but as far as my father's family, it is stagnant.

OK, I freely admit my parents were "older" (Dad 55 and mom 35) and raised with different values, hence, I have had some values I needed to re-learn over the years.  Trust me it has taken years for some.

What am I talking about?  How about that old saying "A woman's place is in the home."  Yeah, I was raised with that one.  Seriously.  I learned to cook really young.  I remember being 5 and scrambling eggs. I still have issues with eggs to this day.  They have to be just about "perfect" (my idea of perfect" before I can eat them.  A little brown on them?  NOPE.  A little bit of the egg white kind of jelly like slime?  ABSOLUTELY NOT!  Brown on an over medium egg?  NO.  Over hard?  Nope.  Over medium if you please, not a speck of brown on the edges, yolk perfect for dunking, and absolutely no snotty white.

I learned to cook, and to clean.  Do laundry.  I learned how to iron clothing, and how to not put too much starch.  I was being raised to be little Suzy Homemaker.  Never could get the hang of gardening though.  But in my defense, when my mom thought learning how to grow vegetables was a good thing, I had no interest.  To be honest, neither did she.  They just opened Neff Pool, a public pool for the neighborhood.  I'd rather be in the water in the summer.  Thank you very much!

So getting back to the "woman's place is in the home" thing.  My parents didn't believe that an education was all that important.  In elementary school, I wasn't allowed to do homework.  That was fine by me, I hated it.  All the teachers were really old, older than I am now, and one of them farted lots.  I remember her being bent over helping one student her butt all near this kid's face and she let one go.  He threw up.

I was a Tom Boy.  I climbed trees, rode my "English Racer" bike at top speed trying to stand on the handle bars (yeah, that didn't work out too well, but it didn't stop me either).  I wanted to play base ball with the boys.  I collected baseball cards.  My dad would show me things in the car engine.  But all that time I was still learning the how to be a good housewife stuff. Hell, my Dad taught me to fight.  I was to defend my younger sister and brother, and if  I was in a fight - I better damn well have won.

In Junior High, Margaret Spellacy, the dress code changed.  (Yes there was a dress code, and girls could not wear pants at all.  Only dresses and skirts)  Girls were allowed to wear JEANS!!  Can you say HEAVEN?  Dress shirts, but jeans!!!!

From that day forward, I wore only jeans.  Until one day in high school, my mom threw out all my jeans.  I needed to start acting like a "lady" and dress that way.  (Don't worry, I ended up with jeans again)

Back on track, no being encouraged for college was not on the table.  Hell, it was a HUGE deal I graduated high school!  I was encouraged to become a "legal" secretary.  Why the hell a legal secretary I have no idea, I wanted nothing to do with law. You do remember that "Tom Boy" thing?  Never really grew out of it.  Parents couldn't beat it out of me either - I mean come on really?  Remember the teaching me to fight?

I was encouraged to do, become a secretary.  At the ripe old age of 17 I was entering the work force as a secretary.  Do your job, get your boss's coffee, don't complain, meet your husband, stop working when you have a baby, and have another baby.  Let's just say I was very conflicted.

I always had a problem with that coffee thing. But here is what I was ALWAYS told:

"SECRETARIES SHOULD LOOK LIKE LADIES.  LOOK LIKE  MODELS.  WEAR MAKEUP ALL THE TIME.  NEVER WEAR PANTS, DRESSES AND SKIRTS." Oh yeah, I didn't swear around my parents.  But...….

Do you know what kind of crap that is?  I actually did that too!  Perfect make up every day.  I did that crap for years.  Hell, I worked at a place where if a female had short hair she wouldn't get promoted.  When I bought work clothes they were always business dressy. Neat, simple lines.  Looked good.

God I can see me as a 17 year old in my first couple of jobs.  Naïve as all get out too, seriously you can be naïve and have common sense, or at least there were time I did.  I got fired from a job because I laughed and joked with the installers.  Never mind it was in front of everyone.  Nothing inappropriate either.  But I have had jobs where I was made uncomfortable because of the double standard of behavior.  My answer?  Quit without notice as soon as you find another job, or just quit.  Then damage the car and not get caught.

If I had encouragement to go to college out of high school, would I have?  Probably.  Did I know what I wanted out of life?  Hell to the no.  What 17 year old does.  Oh, and the only reason I waited till I was 17 to graduate was if I had graduated at 16 I would have needed a work permit and could only work part time.  Besides, who the hell would higher a 16 year old for a job with benefits?

If I could change things would I?  ABSOLUTELY NOT!!  All that has happened to me in the past, the good, the bad, the horrid made me who I am.  All the stuff that made those scars I wear so proudly made me.

It has been a long road to get to who I am today, and I really actually like myself.  In fact I love myself.  You have to be able to love yourself and value yourself before you can truly love and value others.  Oh, and that includes having cancer.  I would not change having it.  It truly has been a double edged sword.

On one hand it has taught me I am stronger than I know.  I have more friends than I realized.  That my children love me, even when I was broken they loved me.  It has also taught me I cannot go through this alone.  I need you all.  I am grateful for you all.

The other hand, it has shown my weakness.  I have a hard time with that.  It has shown me I cannot always be strong for everyone.  I cannot always hold my head up and fight or jump on the white charger and save the world.  Which I have a hard time with.  Such a hard time I hide.  I withdraw.  I am learning not to be such a ninny, but it will take work.



So what stupid shit were you told?  What did you believe?  Would you change it?

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.

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.

Don't Wait on Your Bucket List

Currently I am sitting in Roma!  I can't believe it.  I made it to a country I always wanted to visit, but never thought possible.  Better yet my son Jim and daughter Jasmine were with me.  So far it has been the trip of a lifetime!

Jim and Jasmine at IAD

We left Dulles on the 28th at 9 PM.  (Yes Jasmine and I got there a "little early"  OK, OK, a lot early, I am paranoid) we landing in Paris around 10:40 the 29th, sat around the Pairs airport for a bit after walking back and forth between Air France areas trying to find where the gate was for the second leg of the trip (booked that little flight separate)  The second being Roma (Rome - The Italians spell it Roma, and pronounce it like it looks, why do we change it?)

We are staying at a Airbnb.  Cute little place, right near a bus line and a tram.  We have been taking the public transit.

Which while riding the Metro here, got me to thinking, WHY do we always put off things we would like to do?  Ok, maybe a trip like this needs to be saved for but in the mean time, why not go exploring at home?  In your city or in your state?  Do something that you wouldn't normally do.  Why wait for the simple little things?

Hallway going into the Sistine Chapel

What am I talking about?  Everywhere has local churches that are beautiful.  Full of stained glass, older churches with unique architecture.  You don't have to be a part of that particular religion to appreciate the craftsmanship that went into designing and building the church, or the beauty of the art of the glass, or statues.  Seriously, if *I* can visit the Vatican, than you can explore your local old churches.

For the record, this hallway to me is more impressive than the Chapel.  Don't get me wrong the Chapel is beautiful, but could you imagine being the only one in this hallway walking down it?  Pictures do not do it justice.

Gianni and Ceasare - amazing chef and sous. 

Then we did something anyone can do ANYWHERE!  We took a cooking class with an Italian Chef.  Gianni and Ceasare - amazing chef and sous.

It was so much fun, and the food turned out amazing.  So simple - we made sauce from TOMATOS, and two types of pasta, egg noodles and Cavatelli.

So do you get where I am going with this?  GET OUT THERE AND DO SOMETHING.  DON'T WAIT FOR SOMEDAY!!  Find little things and do them, they will build an incredible number of memories.

One heck of a first day!!  I don't count Tuesday because we got in so late and were exhausted but we found a great neighborhood restaurant thanks to our host!  We were EXHAUSTED.

Our second day?  We visited Equiazione.  Basically it is a sanctuary for horses.  Every horse there has a story, some sadder than others.  We spent the day with Butteros (Italian Cowboys in essence). We took the train to Castel Gandolfo Train Station, where Matteo picked us up.  We ventured on to a local family run organic farm and picked tomatoes for the sauce Matteo made up for lunch.  We stopped a small cheese maker and got some sheep's milk cheese, first salted, and some fabulous ricotta.   Another stop for coffee and a pastry made with wild strawberries.

The on to Equiazione, to learn about the way they care for horses and the philosophy behind it.  It isn't your standard show up the horse comes out of the stable saddled and you go for a ride.  Nope, they talk to you find out your level explain their way of doing things, homeopathic and organic.  You meet the horses.  It was very educational.

Again, where am I going with this?  DO THE SMALL LITTLE THINGS WHERE YOU LIVE!!  Build that book of memories.  To be honest I would have never thought of going horseback riding at home.  I read the description and thought Jasmine would enjoy the experience, as much as I would, I think she enjoyed it more.

Seriously.  Please do not wait until you are in my position.  I spent too much time worrying about things that really didn't matter.  Learn from my mistakes.  I made so many of them worrying and trying to do things that didn't matter.  I wasted so much of my life, so much of the time I could have been spending building memories with my children.  I am not saying go be irresponsible.  But do something, if funds are tight, go to a park you have never visited and picnic.  Walk through it.  Visit a local beach, visit and volunteer somewhere.  There are so many amazing experiences!  Don't waste precious time!

Take your family and go do simple little things.  Do things by yourself.  

Give yourself time to enjoy life.  Only you can give yourself permission to do that.  You need someone to give you permission, ok, I give it to you.

Just another ranch hand

TOMATOS!

Jasmine really enjoyed herself

Jim took a nap

Hot peppers on the farm

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.

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.

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.