2020 The Year I want to Redo

It has been awhile since I have done a post to publish.  The last one I did is still a draft and will not see the light of day. I tended to talk in circles.

This one circles or no, I'll publish.

I'll be the first to admit that when they were talking about Covid-19 back in January and February I wasn't worried.  Concerned yes, worried no.  I figured it would have been on the  spectrum of the Zeka virus.

Then comes the shit storm of March.  I had a CT scan done where they found three tumors and a potential blockages in the small intestine.

Covid-19 was taking over and things were starting to get locked down.  Or self quarantining if you will.

Then I get a call Apri17.  Get to the ER at Mary Washington.  Thank God that Jim and Liz were on their way here and almost here.

In the meantime the world is locking down borders, running out of PPE supplies. Hobby sewers and professional all turn to making masks for the hospitals.  Hospitals are making employees sign for their homemade mask.

Ok, now I am in the hospital, Doctor says Monday we are doing surgery on you.  Comes back later and says, no, we are doing surgery on you Sunday.  I'll have my "A" team here.  Oh lucky me.

Doc explains they are going in to remove the blockage of the small intestine.  If they can get some of the tumors that would be a bonus.  But, and this is a HUGE but. I may end up with an ileostomy bag.  Temporarily.  Depending on how healthy the small intestine is.

Well, I wake up to find out that they were able to get the blockage, and all three of the tumors.  The tumors were all located near the blockage.  I am left with two things.  A small intestine that is the smallest it can possibly be and live, and an ileostomy bag.

The one thing I kept saying I don't want.  A bag that I have to take care of because I constantly shit it in.  To say I was/am horrified puts it mildly.  I am horrified and embarrassed.

They teach me how to change the bag and empty it.  They can't teach me how to deal with the leaks, the seal letting go, shit running down my leg, the bag letting go during the middle of the night,  No, these are all things I have to learn on my own. I have to learn to deal with and accept.  Besides, it is only temporary.

They wouldn't release me until I was sure of changing out my bag.  Every other day I had a nurse that specialized in bags show me and watch me change the bag.

Ten days later I am home, building back up my strength and building my confidence with the bag.  I was getting my strength back, walking, eating, showering.  Almost a "normal" life.  I even got to drive.

In the meantime, the Covid virus is still in the head lines, people are getting antsy to get out and try to have a life beyond quarentine.  Governors are talking about lessening restrictions in phases.

May 17.  I remember looking at the calendar and thinking only 4 more weeks.  I can deal with this for four more weeks.  Ate well that day, and played Catan with Jim and Liz.  (I lost) but I felt good.  Decided to go to bed about 9, got a sudden pain in the lower left absomen.  I figured it was nothing and that I'd lay down and breath through it.  Boy was I wrong.

The pain kept intensifying with no breaks.  After about thirty minutes, I tapped out to the pain.  I texted Jim saying I had to go to the ER, I couldn't take the pain anymore.

Getting me to the ER involved an ambulance ride, luckily they had a "chair" they could put me in to handle all the stairs.  Off to Mary Washington ER.  Once there I got checked in, and had to wait.  When they finally got me in back they couldn't give me anything for the pain because my blood pressure was so low.  But in the meantime, a CT scan was done.

Air in the small intestine, and ulcers.  So they took a non surgical approach to the ulcer in the intestine.  I had so many IVs going they finally put in a pik line (took two tries).  I had IVs on the pik line, attached to my port, plus and IV in my right arm and hand.

Everything was going in through the left arm.  It swelled up and started leaking through the skin.  My vena cava is reduced in size, so my system is working on rerouting my veins.  Lots of little veins to take over.  Well, that produced a huge swelling of my neck.  In fact I had no neck and couldn't swallow.  Two doses of super steroids helped with the swelling and swallowing issue.

In the meantime they do another CT of the instestine, they discover cycsts.  Off to get them either cut out or at least drained.  They could only drain them.  More antibiotics.  While that is all happening they do an ultra sound of the neck and left arm.  Turn out I have several blood clots.

They put me on blood thinner and draw blood every four hours.  They can't use the left are for blood because of the pik line and swelling, so they used the right arm.  My entire arm turned black and blue.  Never mind the right arm is swelling too.  Just not leaking like the left.  Looking at my right arm today you would swear I was a junkie there are so many needle marks on my arm.

It seemed every time they "fixed" something, there was something else to take its place.

I finally said enough. No more.  No more chemo, no more trying to use poison to make it better.  I was feeling weaker and weaker every time something was done.  No more surgeries, even if that means I have to keep the bag.  I have had enough.

I am doing hospice.  At least at home I can try to get stronger.  And no more blood draws.  Enough is enough.

My family understands why I decided what I did.  In fact I am stronger today than when I came home a week ago.  Still weak, but stronger.

I've been technically fighting cancer since 2003.  Although I did have seven years of no evidence of desease.  I am tired of taking poison everyday.  I am tired of the anxiety over scans and waiting to hear what the doctors have to say.  I am just tired.

I'll take time with my family and friends and what peace there is left in this world for me.

What was going on in the world while this was happening? Riots, protests over a wrongful death.  Demands for justice.

Anyway you slice it, since March of 2020 this year turned to shit for everyone.

Please be kind to your neighbors, family, friends and strangers.  Your small kindness can make someone's day better.

Lost in the Sauce

Lost in the sauce is a good way of putting how I have been feeling lately.  Well, at least since I read the CT Scan report.

Well actually, it started before my reading the report.  It all started with a phone call from the doctor's office.  I get a call "Go to the ER, NOW."  I ask why.  The nurse replies "I don't have that information, the doctor wants you to go to the ER NOW.  Which ER are you going to?"  I said ok, I'm going to Stafford Hospital ER, now.  They actually called the ER and told them I was on my way.  

When I got there, I had maybe  a 5 minute wait before I was in the back in one of those wonderful hospital gowns.  The nurse that walked me back told me the doctor's office called and let them know  I would be there, and I would have to wait to talk to the doctor about the CT Scan.

Turned out that my intestine is folding back on itself.  Insusseption I believe it is called.  Blood is taken, the ER doctor talks to the surgeon that did my Whipple, it comes down to wait and see.  If I get any severe pain, or start running a fever, get to the ER because they will have to do surgery.  OK I can handle that.  So I got to go  home.  But during the conversation with the ER doctor, he mentioned there were new tumors in my intestine.  I thought I heard him say that but was more concernced over the possiblity of having to have emergency surgery and how  I was going to have the dogs taken care of and how I was gonig to get home.  So I let it go.  My mind didn't acknowledge the fact the tumors spread.

Then I finally got the notice that the report for the CT Scan was available. It was one of those good news/bad news type of deals.  The good news is that the chemo I am on (Votrient) helped shrink the tumor in my left lung by 2 mm.  Actually, that would be great news if that were the only news there was.  The bad news, two new tumors in the intestine.  Still in the back of my mind I wanted to have misread there were two new tumors.

To be honest, I wasn't all that concerned, I figured I'd see my oncologist and they would change my chemo to see if it would help.

Let me be honest, I was getting anxious over the whole thing.  I wanted to see the doctor and get the chemo changed.  Somehow I wanted to believe that maybe I read the report wrong.

I mean seriously, how does chemo work on tumors above the waist, but lets tumors grow below the waist?  The chemo is in the blood!  It goes everywhere.

Well, I finally got to see my doctor, I was in a fairly good mood.  All I needed him to do was confirm what my mind wanted to happen, change the chemo.  

This time he said the word surgery.  That stopped me cold. He wants me to talk to my general surgeon and to an oncology surgeon.  What they decided determines what happens next.  Right now I am waiting for the offices to call me to set up appointments.  They were supposed to be set up for next week, but so far I haven't heard from either one.  So I am stuck again in the holding pattern. I saw Dr. VAughn on the third of March.

I am not that crazy about surgery.  I've had two abdominal surgeries in the past.  I was cut open from above my belly button to just above the pelvic bone so they could access the intestines.  They were not easy surgeries.  They took a lot out of me.  

Part of what is bothering me this happened when I just started to work out and try to get into better shape, funny thing being is that one of the reasons in the back of my head was because of possible surgery.  Part is the fact I actually have been taking steps to go back to school for the summer quarter.  That is May.

Recovery from surgery can take a long time for me.  It isn't as simple as people think.  It isn't a snip, snip you are done type of thing.  People mistakenly think that.

Add to that if they decide that surgery just isn't an option for me, Doctor Vaughn is talking about adding another drug to the Votrient to see if it will help.  Which translates into more side effects. How will that affect school?

On top of that Doc looks at me and says "You've been battling this for a long time.  The bag is getting thin."  Translation - they are running out of things to try.  I'm at the bottom of the barrel scraping it. 

I may be running or have run out of options.

I have all this running through my head while waiting for a doctor's office to call with an appointment.  No wonder I am depressed.

Depression

Depression isn't something that only cancer patients suffer from.  Anyone can suffer from it.  It is one emotion that cancer patients share with everyone.  This is my whine about my depression.  Yes, I am working on a whiny post about how crappy I feel.  You may want to bail now.

This may be depressing or even make you angry.  But that is OK, because it gets a reaction from you.

If you know someone who suffers from depression either openly or silently, let them know you are there.  It can make a huge difference.

I am depressed.  Very depressed.  Normally I try to hide it and put on that brave face like nothing is wrong and nothing can stop me.  When I am around people I have a little switch that I can flip that puts the façade of everything is great.

Cancer is physically and emotionally exhausting.  So is life to be honest.

I am at that Stage IV of the four emotional stages of terminal cancer.  Actually it isn't just terminal cancer that depresses me.  Life in general is depressing, but the cancer is the main reason, well one of two  main reasons I feel this way.

I am tired of the hurry up and wait routine of cancer.  I think I have said that before.  Hurry up, set up the appointment for the doctor, now wait for the appointment.  Hurry up and set up the appointment for the scan, now wait for the scan, then wait for the doctor to read it.  Hurry up and wait.  Then you get the results and it is either hurry up and wait nothing has changed or hurry up and figure out what is next because it spread.  Hurry up and wait, don't plan anything because this can screw up the best laid plans.  Or you go and plan or try to plan around the appointments or the unknown.

Hurry up and wait.  Hurry up and wait.  I am tired of hurry up and wait.

I am tired of being on disability.  I am tired of being worried about making sure I can keep Medicare, I am tired of not working.

I want to work.  I need a job.  I need one that pays what I get on disability and has good health insurance.  Yeah, the health insurance is a biggie in the hurry up and wait game.  Yes, I want off of disability and I want to work.  But finding that job that pays, has insurance and is willing to deal with the cancer issue is a rarity.  Yes, discrimination is illegal.  But that doesn't mean it doesn't happen and proving it is next to impossible.

I am tired of feeling alone.  I need people and friends.  Folks to hang out with and talk to.  Someone that comes over just to BS.  The connection of someone being there. I feel like my life is a drift in between the times that there are doctor's appointments, scans and the next job application.  Like I am this little boat in an ocean just drifting with no where to anchor.

This isn't my best writing.  I didn't expect it to be, but it is truth about how I feel, and I am sure there are others out there that feel the same way.

I am so tired of drifting and feeling lost and alone.  I am so tired of feeling depressed.  I am so tired of cancer and all the bullshit that goes with it.  I am so tired of feeling worthless, that I have to depend on everyone if I get sick.  I am so tired of feeling like if something happens I let people down, I am so tired of this whole cancer thing.  I am so tired of feeling like a drain on my family and friends.  LIke I always need them to be here an around me to make me feel better.  I am so tired of being the strong one.  I am so tired or feeling tired.  I am so tired of the lack of taste and having to take meds every day.

I am just so tired.  And I am sure there are others that feel the same way as I do.

I need to go back to school or something.  Free.  Yeah, that is the killer.  Anyone know of a good search for grants for old, dying people who need to get a job?

I am tired of feeling worthless, like a drain on everyone.

Yeah, I'm depressed, but I am trying to be honest about it.

The Holidays and Cancer

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

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

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

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

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

Bailey

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

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

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

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

Sasha

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

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

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.

It has been awhile - Dance five complete, Dance six to start

Well, the last time I posted, it was to explain my arm tattoo.  Since then, spring 2015 they found a tumor in the left lung.  You know my good lung. 

It was decided that they would do surgery (separate the ribs, remove the tumor), if good margins were obtained, no chemo.  They chose to take this route since the last time I had chemo it nearly kill me.  Well they got good margins!  Surgery on Monday, back to work on Wednesday. 

Well since then the contract I had a job under at the Marine Base ended, so I became unemployed.  But I have Cobra, for now.  October, a small spot showed on the CT Scan.  They thought it was a small pocket of fluid, and opted to watch.

November I started having issues breathing.  Like a weight on my chest.  Some days it was worse than others.  Thanksgiving was spent in New Orleans with my kids, and it seemed OK, so I figured that maybe I had just had a chest cold or something.  Once I got home, one day it would be OK, the next it wouldn't.

It kept getting worse, and finally after a rough weekend, I figured on Monday I'd call my Family Doctor, and be told I had walking Pneumonia.  Well, Monday I felt OK, not perfect but a little better.  Tuesday, I felt crappy, so I called.  Talking to the appointment clerk, she transferred me to the nurse, I told her I was having a hard time breathing, a weight on my chest.  Well, she said go to the Fredericksburg Office to their urgent care, me, I figured, I'd just drive to the hospital near me.  Only a few miles away, and I would be able to drive home.  Yeah. 

The ER doctor came in and the "fluid" area was larger.  They wanted to keep me and have radiology put a drain in the lung.  OK. After that he came in and tells me that they are going to transfer me to Mary Washington Hospital because they are better equipped to handle my issue, and possible complication.  (Translation, my doctors wanted me closer, and the hospital is considered a trauma center).

I met one of the Oncology doctors mine works with, he tells me that they will be following, and talking to the Tumor Board about me the next day.  He started talking about Antibody treatment and newer just approved by the FDA treatments.  I just dismissed it.  All my doctors track me. If one knows something, they are in communication.

Well they put the drain in and no fluid really came out.  After a couple days of it, I talked to my Thoracic Surgeon, they want to drain it surgically, me - I am ready to agree to anything as long as I can breath without an elephant on my chest.

Fast forward to after surgery.  Talked to the doctor, he said there really wasn't fluid in the lung but pockets on the lung and attached to the heart.  Me not really thinking anything worse, cool, I can breath.  He got everything he could, and sent it out to several labs for biopsy.  Everything they take out of me goes for biopsy.

January 7th.  The surgeon is back in town, at 8:00 AM, I get a call from him.  Do you have time to talk?  Sure! I say in my normal upbeat voice.  Then he drops the bomb.  The cancer is back.  All the doctors know.

January 13th.  I had a follow up appointment with the surgeon who did the Whipple, and removed the tumor from my leg.  We chatted (yes he already knew)  He asks me what plans do I have?  Well I want to go to New Orleans for Mardi Gras, but that schedule hinges on treatment, and I'd really like to go to Tuscany, see the Rockies, the Grand Canyon.  I want to take a helicopter ride over it and a donkey ride into the canyon if they still do that.  He told me do it.  Don't let the treatment interfere with doing it.  OH OH.  When a doctor says that, it is time to be a bit concerned.

Well, I went to the Oncologist office after that, yeah, it is back, it is attached to the heart. 
Me:  OK, so now what?
Doc:  It is inoperable.
Me:  Oh.  So translate.
Doc:  Stage IV, inoperable.
Me:  OK, so what is next?
DOC:  Antibody treatment, just approved by the FDA, but it is approved with only Adriamycin.  Which you had the entire amount allowed.  Anymore would damage your heart.  But there are alternatives to it; the insurance company will have to approve it.

He wanted to start this week, but everything needs approved by the insurance company.  I have a CT scan scheduled Friday to see what it looks like.  They need to try to "Router Rooter" my port, and if they can't, replace it.  But it all depends on the insurance approval.

Now since I am unemployed, I have Cobra.  But my Cobra runs out in March, so in order to get insurance and covered during the Open Enrollment (pre-existing conditions) So, I have an ACA policy that kicks in in February.  So one insurance company will approve anything in January, and it will all have to be redone in February. 

So I will be shelling out for out of pocket and deductibles on two policies.  But at least I won't have to meet the $5500 on Cobra, and the $7000 on the new insurance.  Very confusing.

But I am a bit frustrated.  I work two part time jobs.  Between the two I bring in about $930 a month.  More than unemployment, and living off my savings while looking for a job. 

ACA said I make too little for a tax credit. 

Yes, I am still looking for a job.

Biopsy, surgery, waiting on the May Clinic to decide what is next

February 18 I had a biopsy done.  The doctor and nurses were really nice.  They were explaining what they were going to do, and I told them don't sweat it, this ain't my first rodeo.  Which made them go huh? Then ask what I meant, I told them.

They used an ultra sound, and what I thought was a tumor that wasn't too large, turned out to be the size of a golf ball.  Did I mention that before?  Remember sometimes I get lost in the ideas that run through my muddled brain.  I didn't even  have to see to know it was larger, when the doc says, no needle aspiration, we are taking tissue samples, it kind of lets you know it is bigger than you thought.

So he numbs me  up, gets the clippers, and takes four cuttings.  The loud snap of the thing is rather funny.  No I didn't feel a thing, and watching the ultra sound screen was interesting.  Got that done, then it is hurry up and wait.

Close to two weeks later I am in the surgeons office, being asked when do you want to get this done.  My answer - tomorrow?  I even got the choice if I wanted to do a hospital stay or do it as an outpatient.  Since the outpatient surgery suite is at the hospital, if anything goes funny I'm right there, but if everything goes well, I can just go home.  Sounds like a plan to me.

He said that the ultra sound images looked good for a total removal with good margins.  So we scheduled surgery for March 18th. 

Oh, yeah it was a retroperitoneal sarcoma, high grade, although today he said that the preliminary findings from the Mayo Clinic made it higher, I think that just translates into it is very aggressive and  is poorly differentiated or undifferentiated.  Basically that translates into it has no real pattern it just grows, no cell organization to speak of.

So now they want to get the entire report back go through it and decide if radiation would be a course to go after.  Trying to keep chemo off the table since I crash and burn so fast.  Doctor Vaughn is going to bring it  up at the tumor board.  Who knows, maybe yes and maybe no.

I can walk without a problem, oh the margins are negative, so that is good.  There is a good portion of my right thigh that are numb.  Literally stick a pin in and I don't feel it numb.  Some of the smaller nerves may heal, but again, that is a who knows.

I did find out one thing, I have been abusing it.  Started yoga, again, figured gentle stretches, would be good, and my body need the exercise like you wouldn't believe.

Wrestling with two pit bulls wasn't a smart idea either, had Sasha flipped over and was holding her and Bailey comes over and lands two paws on the incision.  I feel a tearing, ouch, ouch, the feeling of  hot liquid.  I thought damn I ripped open the incision.  Nope, but I did cause some damage that cause it to bleed under the skin and seep fluid under the skin.  The body will reclaim the fluid, but it will take a while and I will have to not abuse the leg for a bit.  Although he didn't say not to do yoga.

Oh, and Doctor Vaughn told me that I will be seeing him every three months and getting scans every 6.  I'll never be cancer free, only waiting until the next eruption.  Could be a week could be a few years, but it is always going to be there.

And that is the news from this little spot in the world.

Not Even a Year

Ah fuck, it is back and I didn't even get a fucking year off from it.

Water Temple in the mountains Bali

That is what I thought when I first felt the small lump back in December.  Not even a year.  I didn't even get a fucking year.  OK, let me give you a brief back story.

Second week, or the  third week of December I was sitting on the pot taking a leak, (you didn't expect me to be all prim and proper did you?) and my right hand (get your mind out of the gutter) was laying on my right thigh, and I thought I felt "something".  Not too big, maybe the size of a nickel? 

So I kept pushing and pulling the skin, and sure enough, it wasn't going anywhere and rock hard.  Well ain't that a piece of shit.  I'm thinking, yep need to go to the doctor, then I thought, too close to Christmas, don't want to deal with that during the holidays.  I'll call the doc after the holidays, but keep track of the size.

I did keep track of the size, it didn't seem to grow much, and the holidays were over.  I went to call the doc and set something up and looked at the calendar.  Oh, I'm not calling.  Not till I get back.  I'm not putting my trip to Bali in jeopardy.  I won't get a refund!!


More back story, back in August of 2013, I decided I was going to take a trip.  There were some really good deals on Living Social.  First choice was Morocco, but the State Department site said it wasn't the most stable place to go, (I only found that out after my son sent me the link and told me to read it), China was next, but there was a bit of tension between the US and China over that hacking.  So I said Bali, and everyone thought that would be a good choice for my first international trip.  If the price weren't so cheap I would have never gone.

Now I got back from Bali on January 22 (yes it was beautiful, and fun and yes I want to go back even with the long flight) so I called the doctor that Monday.  Went in to see him the first available appointment, which was a week, two weeks? later.  He felt it.

CT scan for the chest and abdomen, because you know how I tend to have those buggers start growing out of no where and they grow everywhere.  That was Monday, went for a biopsy with an ultra sound on Tuesday.

The doctor felt it and at first thought a needle biopsy would work, until he did the ultra sound.  That bugger is bigger than a golf ball.  Going into the leg.  So he took four "core" biopsies.   Basically they numb you up and stick a 10 gauge needle into you and this thing goes through the needle out into the tumor and you hear a sound like a heavy duty commercial staple gun.  That is the tissue sample being clipped off.

So there you have it.  I'm starting the year all over again dealing with this.  Isn't it ironic?  I hate winter and this shit always happens in winter, and it always starts out in January/February. 

No I don't know what was on the CT scan yet, or what the biopsy says, when I do I'll let you know.

The way I see it is I have a few different possibilities, I'll list them, starting off with the worst case scenario and ending with the best.

Worst, there is nothing that can be done, and I just live what life I have left (if this happens I'm putting out a begging jar so I can do another trip of a lifetime before I kick the bucket.  Oh a bucket trip for the bucket lady! :D)

Less worse:  I loose the right leg.  Hell, I can live with that.  Will have to figure out how to get around and drive but I can deal.

Less, less worse:  They remove the tumor, damage the leg making mobility a challenge, I have to do chemo and radiation.  Actually, I don't want to have a gimp leg so this may be worse then the less worse.

Less, less, less worse: Minimal damage to the leg, large scar, chemo and radiation

Less, less, less, less worse:  No damage, huge ass scar, radiation.

Less, less, less, less, less worse:  No damage, huge ass scar.

Never mind all of the small little variances in between each scenario.  So it basically comes down to this, ain't no sense in being worried or concerned.  When the doctor gets the results and talks to the cancer board (by the way I am a topic at just about every board because of the type of cancer, severity, reactions to treatment and surgeries, paving the way for others) we'll figure out a path.  If I don't like the options, I'll go find Doctor Flynn at the American Cancer Institute in Pa.

So, I get to put off some things I wanted to do this year, gotta cover the out of pocket expenses.  Seems like when I pay them off BAM they are back.  (I was actually toying with the idea of going to Alaska in June just to see a bunch of folks, but oh well, you guys have fun for me).

That is the latest update from this end of the world.  How's it going for you?

No Lemon Slices for the Tea, and a moment of your time please

Nope, can't have any fresh fruit, or veggies.  So basically it all has to be nuked, cooked and dead.

I can't stand the coffee here, so I switch to tea with lemon.  Yeah no lemon.  Huh.  But they do have Mandarin Orange Slices on the menu, every time I ask for them I hear, you are not allowed fresh fruits or vegetables, I say they aren't fresh, they are canned.  They check and I get my Mandarin Oranges.

Now, I like them but it isn't so much so I can have the orange slices, it is so I can pour the syrup into the tea, which helps make it a little more tolerable since I can't have my lemon.  Yeah, I eat the oranges too.

Not sure exactly when I will get out of here, the infectious disease doctor thinks I may be able to go home soon, (he didn't define soon) but I'd have to be on antibiotics.  He was thinking oral, but since I have a port, he is of the IV preference.  Yeah, IV antibiotics at home, but he also said something about keeping me till Friday, he would talk to Dr. King and Vaughn.  Friday?? Is he out of his freaking mind?  But I am still waiting to hear from the surgeon and Dr. Vaughn.  And the consensus of the platelet issue. Hurry up and wait.

Now, I'd like to ask a huge favor from everyone.  My kid sister was diagnosed with breast cancer.  The doctor said it was early, which is a good thing.  She is terrified. The final diagnosis of the type won't be back until the biopsy comes back Friday.  He told her she would probably do surgery, radiation, but nothing is solid yet.  She is on her way to another doctor's appointment right now, she'll call me when she gets done.

I can't explain why cancer doesn't frighten me.  I don't know  how to explain it.  I know the word frightens her.

So if you would please, light a candle for her, say a prayer, send her healing thoughts.  She needs the strength.  She is scared.  Right now she is my bratty little sister who used to be a real pain at times, but she is scared and moral support is what she needs.

And if you know of any breast cancer links for help, support, whatever, I will be happy to pass them along.

Reflections on 2011

Well, it is 6 PM on New Year’s Eve, the dogs just finished their dinner, the house is very quiet, Jasmine is at work at the Log Cabin, Jim left to go out with some of his friends, Michelle and Evelyn went to church in their PJs.  OMG PJs!!

Here I sit, and have the urge to write.  But what to write about? I look back over the past year and I do not wish any of it changed.  Yes, it was a challenge; I think more of a challenge to those around me than to myself.

I have to admit, last New Year’s Eve I wasn’t even thinking that I’d be spending 2011 dealing with cancer and surgeries, hell, I was just hoping to get through the year with positive balance in my savings account.  (And yes I did that!  I have thirty-five cents in my savings account, isn’t much, but it is a positive!)

Last year I may have even thought I might have a date on New Year’s Eve, but life had something different in mind for me. 

Life doesn’t give you what you want, but it gives you what you need.  Sometimes I have to disagree with that statement. 

The reason being, a dear friend of mine lost her son in Afghanistan.  What mother needs that grief?  My heart breaks for her; she has faced the loss of her son with honor and dignity.  She has brought honor to his memory.  She is an incredibly awesome woman.

But when it comes to me, it seems that saying works.  The lessons it brings me aren’t always the easiest to take, and sometimes I wish that it would just bring me what I want (think winning lottery ticket and being a philanthropist).  But it is what it is.

In 2003 life brought me cancer, a time in my life when I really thought that the human race was comprised of two kinds of people, those who loved their pets and those who thought they were disposable, and those who would say what they thought you’d like to hear but not mean a word of it.  To be honest my heart was in a very dark place.

Back then it taught me that not everyone was like that, that there were people to genuinely care and wanted to help, and it taught me I was stronger than I ever thought I could be.

2011 I needed lessons again; at least life saw it that way.  But I don’t think I learned anything new, it just reaffirmed things I already knew.

I already knew I worked with the best bunch of people you could wish for, I mean how many people that YOU work with would shave their heads to show support and that they care?  Seriously.  You have no idea how that touched my heart.

My daughter chose to leave her life in California to be here with me, no one will know what that means to me, and I watched her grow as a woman.  She has been blossoming and becoming the woman and artist I always knew she was.

My son is working on his PHD.  And I am so proud of him, but nothing in the world can describe how I felt when he told me he was proud of me.  I don’t think anyone will ever understand how much that meant to me.

All of my friends with their cards and notes of support, letting me know that they were thinking of me, and my sister Carol with her bracelet campaign, and the notes and packages from Addie.

Yeah some of it was a bit rough, even gave the doctors a scare, but I survived it.  Got the scars to prove it.  Five surgeries this year.  Lost 2/3 of my right lung, two feet of intestine with two tumors, part of the right pectoral muscle and main nerve to the arm, but it was all worth it.  I am alive and I have a wonderful family and a great bunch of friends.

So, I may not be out to a fancy party with a date to ring in the New Year, but I am content in knowing that I have family and friends who love and are there for me.

Happy New Year everyone, May the New Year bring you health, happiness, prosperity and all that your heart desires.

Huh, maybe next year I'll have a date. ROTFLMAO!!

Day 2, Cycle 4. Chemo Drugs 101

Well, the Aloxi/Decadron, anti nauesa drugs went in, now the Mesna, helps prevent damage to the bladder is going in, then the Methylene Blue, suppose to help the side effects of the Ifosfamide.

When I first went through Chemo in 2003 I had an interesting chat with my Doctor.  Both he and I agree on this over simplified version of an explaination:  Chemo therapy is feeding the body poisons while trying to protect some other organs, killing the body's cells off slowly, basically killing you slowly to kill the cancer, to bring you back from the low depths the chemo brings you too.

Basically it is true, you slowly begin to feel like crap, your hair falls out, your immunial system is compromised at times,  your blood production is slowed.  By the time chemo ends, at least it is for me, I feel like crap, look like crap and don't want to eat.

I figured that it my help if I list my drugs, and what they treat, with some of the side effects.  What may it help?  It may help those who know someone going the chemo, watching the effects wondering why it is happening.

So here is my list with what they do and side effects.  There are many more drugs and side effects.  These are just what I get.  Need more information?  www.chemocare.com

• Aloxi - anti nausea medication.  Helps prevent the nausea the day of, up to 24 hours after the chemo treatment.  Side efftects:  Allergic reaction.  Headache, constipation, tiredness. 
• Decadron - anti-inflammatory medication, anit nauea.  Relieves inflammation in various parts of the body. It is used specifically to decrease swelling  associated with tumors of the spine and brain, and to treat eye inflammation. Treat or prevent allergic reactions. As treatment of certain kinds of autoimmune diseases, skin conditions, asthma and other lung conditions.  As treatment for a variety of cancers, such as leukemia, lymphoma, and multiple myeloma.  Used to stimulate appetite in cancer patients with severe appetite problems.  Also used to replace steroids in conditions of adrenal insufficiency (low production of needed steroids produced by the adrenal glands). (OK so this wasn't super simple explanation)
• Emend - Anti nausea med, blocks chemicals that cause nausea.  If you already are nauseated, it doesn't work.  Side effects: headache, flushing, allergic reactions, shortness of breath.
• Mesna - Protects the bladder from damages from the effects of chemo therapy drugs.  Side effects:   bad taste in the mouth, diarrhea or soft stools, headache, nausea, vomiting, fatigue.
• Methylene Blue - Treats methemoglobinemia, vasoplegic syndrome, ifosfamide-induced encephalopathy, cyanide poisoning. 
• Ifosfamide - Used to treat:  Recurrent testicular cancer and germ cell tumors, Sarcomas (soft-tissue, osteogenic sarcoma, Ewing's sarcoma), Non-Hodgkin's lymphoma, Hodgkin's disease, Non-small cell and small cell lung cancer, Bladder cancer, Head and neck cancer, Cervix cancer.  Side effects:   Low white blood cell count. (This can put you at increased risk for infection.)  Low Platelet count. (This can put you at increased risk for bleeding.).  Hair loss, Nausea and vomiting, Poor appetite.   These side effects are less common side effects (occurring in about 10-29%) of patients receiving ifosfamide:  Central neurotoxicity (including sleepiness, confusion and occasionally hallucinations).  Yes I fall into the 10-29% category.  Delayed effects:  There is a slight risk of developing a blood cancer such as leukemia.  Yes even chemo therapy drugs can cause cancer down the road.  Ironic isn't it?
• Epirubicin - Breast cancer.  No I do not have breast cancer, or any symptoms of it.  Side effects:  Pain along the site where the medication was given   Nausea or vomiting.  Urine will appear red for 1-2 days (the Methylene Blue does the same thing only blue, and it over powers the pink or red) Low blood counts, both red and white.  Mouth sores.  Hair loss on the scalp or elsewhere on the body (the hair doesn't have a chance with these drugs I am taking),  Nausea and vomiting (see a trend here?).  Fatigue.  Amenorrhea (loss of menstrual cycle).  Darkening of the skin where previous radiation treatment has been given. (radiation recall).  Diarrhea, Infection,  Darkening of the nail beds, Conjunctivitis.  Problems with fertility. A serious but uncommon side effect of epirubicin can be interference with the pumping action of the heart. You can receive only up to a certain amount of epirubicin during your lifetime.

That is the complete list, well not counting the pills, compozene, and Zofran.  Anti nausea, it is really interesting all the anti nausea drugs they use now, and it does help.  As long as you take them at the first sign of queasiness, cause once it gets going, just get out the puke bucket.

A good place to go for drug information is www.chemocare.com .  Where I got most of my information.

The Ifosfamide is next, where troubles begin if there are any.  Last time on day 2 I got a ride to the hospital in an ambulance.

Hope this is better this time.

Two more weeks of Radiation, Port goes back in then Chemo

Yeah I know, been awhile.

Well, I have two, well, actually two and a half weeks of radiation left.  At a higher dose of radiation too. 

The skin in the area of radiation is a bit tender, feels drier, and looks redder and scratchy/dry.  What is the real pain in the butt is the fact that not only do I have the little "tattoo" dots, but they also mark around the  dots with Sharpie, black sharpie, and make an "x" on the center of the spot of radiation as well as draw a circle around it. 

Sounds funny doesn't it?  This wonderful technological treatment, has use of a black Sharpie marker to line up the area for treatment.  That really isn't so bad, but the fact that the damn marker rubs off on your clothes is a pain in the ass.

That stuff doesn't wash out, and I really don't have that many clothes that fit right now!  Beige, white bra's, the strap is turning black.  (Remember the area being radiated is under the right clavicle bone - collar bone).

Oh yeah, and the black circle they draw shows unless I am wearing a high neck shirt, even a modest scope neck makes it look like I drew lines on myself in Sharpie.  Seriously.  And yes, I catch people looking at the black lines.   They get all embarrassed when I say, yes, that is a black marker line.  My technicians like to draw circles and x's.  Of course they don't know I mean the radiation techs. Not the phone techs.

Get to see Doctor Flynn the 27th.  I can tell you already about the whole appointment, we'll discuss the up coming "procedure" - getting a new port put back in on the 4th of November.  How I am doing, which really is fine other than a bit of tenderness.  My ability to find great bargains.  (Found a Ralph Lauren purse at the Good Will for $0.83, yes eighty three cents, and a Prada - for real one - for $3.99).  He'll also tell me I will need to go for a CT scan of the main portion of my body to make sure the cancer is all at bay, and he will be a bit concerned about the tenderness in the abdominal area.  Then I'll go for blood tests, and what ever pre surgery thing I need to.  Get my port on the fourth and start chemo on the 7th.

Doctor Vaughn, oncologist, is going to try to give me less of a dose of the chemo meds this time around considering how I reacted last time.  He'd like to keep me out of the hospital.  If I don't react well, I'll end up having to be hospitalized for chemo treatments.  Four days in and a week out.  Not something I would look forward too, but I did that routine in 2003 and survived, so I can do it again if I have to.

The biggest thing I was worried about was a wedding cake I wanted to do for a gift for Kristen and John Q.  And it got done,  and they liked both the Bridal and Groom's cake.  I was worried about it when they said I had to do chemo again.  If they had started chemo first I wouldn't have been able to do it, but the doctors listened to me and my bitching about I really needed to do this and it meant a lot to me.  So I won.  :D

Any who, here are some pictures of my hobby.

Wedding Cake

Groom's Cake

Cupcakes for the Bride's Sister

Going Away Cake for Sgt. Dean

Baby Shower Cake for Debbie

August 23rd, has come and gone. Chemo and Radiation ahead

Been meaning to getting around to doing this for awhile.  Trouble is, when I felt like expressing my thoughts (yes I have them on occasion) I wasn't near my laptop, and when I could have done it, I really didn't feel like sitting down and making my brain work.  (Yes I have a brain, they did a couple of CT scans to prove it!)  I so wish I could be one of those witty, inspired, dedicated to weekly posts, but I am not.  I suffer from "Shiny Metal Object Syndrome", other wise known as ADHD, oh sorry, got side tracked again.  :D

This surgery was the easiest of all of them.  Tuesday I went in to have the mass removed from under the right clavicle, in between the pectoral muscle, and the port I had for chemo was removed, it wasn't working anyway and they wouldn't be able to use it.  Wednesday my doctor let me go home.  I even asked him if I could go back to work part time on Thursday, but he said no I had to wait till after my follow up appointment, which was the following Monday, so I was back to work on Tuesday.  A bit achy, but otherwise functioning fairly well.

When I went in for my follow up, I got my hug from Dr. Flynn, love him and his staff.  Such wonderful, personable people.

Any way, first thing I asked was, did you get good margins?  Let me explain.  Most tumors are in cased in a very thin membrane, and the surgeon tries to remove a margin of healthy tissue around the tumor to make sure the membrane isn't damaged.  If it is damaged there is a possibility of microscopic cancer cells that are still there and the cancer will come back.  (No that isn't what happened in my case, in 2003 they got good margins by removing my left hamstring, hell the damn tumor was attached to it!)  I just happen to be one of those lucky folks that have it reoccur, and this year I was even luckier to have it decide to pop up in four different spots in my body, which does happen.

He did get good  margins.  BUT and here is the but, the pathology report says that in the 12:00 position of the mass the membrane was damaged.  Now remember we are talking about something that is extremely thin, and for the human eye to see it near impossible I would think.

Dr. Flynn explained to me that when he took out the mass, he removed a small portion of the pectoral muscle, along with a few branches of the nerve that it was attached to.  The nerve just so happens to be the nerve that controls my right arm.  He felt certain he got good margins, he even took a few branches of the nerve to be sure, and yes I can tell they are gone, luckily the motor skill they control does not bother me, and the other muscles are learning to help compensate.

The membrane could have been damaged at the lab, or the margin was there in the first place.  It isn't Dr. Flynn's fault, come on, this man is an amazing surgeon!  He removed part of my intestine and I don't use a bag to crap in!

So to err on the side of caution, I need to under go intensive radiation on the area the mass was in as well as more chemo therapy, which means I will have another port put in.  (When they take it out it will be the third port in my collection!)

The eighth I see the Radiation Oncologist, Dr. Chinalt, and on the 13th I see my Chemo Therapy Oncologist Dr. Vaughn, they'll give me my schedule, and what drugs will be used.  Dr. Flynn will put in another port and I'll start.

That in a nut shell is what is going on.   Think I'll go read a book, hmm, maybe go to Starbucks and sit around.  It is really going to suck having the colder weather here, I've come to enjoy sitting out on the deck or at Starbucks to relax and read.  Oh well, that is a topic for another time. Talk to you all later!!