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!

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.

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.

The Four Emotional Stages of Terminal Cancer

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

Stage I - Devastation & Anger

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

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

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

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

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

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

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

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

You don your shiny armor and brave face

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

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

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

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

In reality this stage can be exhausting.




Stage III - Acceptance

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

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

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

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

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

Stage IV - Exhaustion - Isolationism

You are tired before you even start

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

You try to protect others by isolating yourself.

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

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

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

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

You convince yourself it is for everyone's best

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

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

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

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

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

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

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

You hide your feelings

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

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

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

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

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

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

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

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

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

Always, always be kind to yourself.

Time Keeps on Slipping, Slipping....

For the most part the terminal thing doesn't bother me.  We are all going to die someday.  Just some

of us know it will be sooner rather than later.  To be honest, I'd prefer later.  Much, much later; but it seems later is a very relative term too.  Later to me would be measured in years rather than months.

You guessed it.  Today being terminal bothers me a bit.  There are actually several things that go into it bothering me today - well OK on the days it does bother me; they are not all that often but it happens.

For instance, time does fly.  Even when I am doing nothing.  Before I know it I am making dinner, feeding the dogs and deciding if I want to read or watch an hour or two of TV.  Seriously, I mean a day of nothing.  Vacuum, dishes, sit outside if it is nice.  If I decide to read - well there goes hours.  Another day gone.  Am I a day closer?  I don't know.  To be honest neither does the doctor, but considering that the tumors are growing on the aorta, on the left lung and in the intestine, well that just doesn't give me a warm fuzzy.

I am considered disabled because of the terminal cancer, and the side effects that the chemo causes.  I have really good days, and about a week to ten days of crap after chemo.  I'd love to be working, but I have that conundrum, should I be honest?  Usually things bite me in the rear when I don't do the right thing.

During interviews you do not have to give any health information.  But once you have a job offer, well, that is where things can get sticky.  To be honest, I totally understand it.  I mean do you tell them "Hey by the way now I am hired, I have to do chemo every 3 weeks, am sick for about 10 days after, need time off for doctor appointments, oh yeah CT scans, Echo cardiograms every 3 weeks, and there probably will be an occasional stay in the hospital.  Oh, and they say it is terminal."  Could you see the look on the face?  That would be one to take a picture of.  Not to mention I'd burst out laughing.  But I sort of miss working.  I had a game plan.  Monday through Friday was work.  Saturday and Sunday, field day the house and one project in the house.  Structure.  As crazy as it can make me, I had structure.  I have tried the schedule thing, yeah, I am not the best in the world at it.  But I keep trying.

Although if I do things right I could be constantly on the run - but I'd have to win the lottery for that, oh yeah, I have one ticket I need to check the numbers on.  Keep your fingers crossed.

Yes, I have done some amazing things in the past year and a half - give or take, but I'd rather not be

terminal.  I'd rather not have that in the back of my mind waiting to sneak out and tell me that the clock is ticking, get to living before you die.

I would trade it all, for a "normal" by my definition of life, more time with my family.  More time with Jim, Liz and Jasmine. More time to learn.  Learn what?  I don't know.  There is a whole world of knowledge out there, and I am trying to ingest some of it.

Chemo brain really sucks.  Things get in my brain, but get lost in there.  Remember when we went to France and Italy?  Here is an example of chemo brain.  I had been doing Italian language courses for a year, even before the cancer came back.  Basic beginner, I don't want to look like a total idiot tourist stuff.  What did I remember?  Bango.  BATHROOM.  Seriously.  That is it.  Still can't remember sh**!  Bango, bathroom, sh**.  Get it?  Where is your sense of  humor?

Right now every so often I get the little voice in my head - "Hurry up do this, do something, do that, face this fear, go here, go there, don't worry about finances, eat this, do that, hurry, hurry, hurry, you are wasting time.  You're going to die. Hurry!"

That voice can cause a paralysis.  What to do?  How do I get there?  What will it cost?  Where do I go?  Add that to the normal life things, paying for groceries, utilities and the such my head just gets crazy. Those questions run rampant in my head the days the little voice screams at me the end is near.

It is very easy (I have been very guilty of this) to allow oneself to become isolated and introverted.  It can be exhausting to be around people.  Not because of the chemo, but because sometimes people are exhausting.

For me it is easier to speak to a group of people than individuals.  Hard to believe?  It is true.  Well, as long as I could walk around.  Standing in one place may be a challenge.

When I went to the Intro to Kayaking I had all sorts of reasons why I should just stay home and skip it.  Really, some of them were good, some were from left field.  Why?  I don't know.  Perhaps it was because it was beyond my comfort zone.

Water aerobics is on the horizon.  I actually have a swimsuit I will wear. Tomorrow on the way back

from the mechanic (car is clunking left front, and a hum right rear wheels told you I have first world problems) I'll stop at the pool and see what the schedule is.  Classes at 10:00 would be nice.

I am not depressed.  I know what that feels like, I am just not liking things right now.  No, I am not sorry for  myself.  I will never be sorry for myself.  Cancer has taught me how strong I can be, and how amazing my family and friends are.

Ever see that movie "The Secrete Life of Walter Mitty"?  I am Walter.  I am that person who had gotten comfortable in my life working everyday, paying bills, squirrelling away a little nest egg (those things go fast by the way, so try to double your nest egg, don't learn the hard way you should have doubled it) being forced to face life and do things that I would only dream of and never do.  Only I keep realizing there is so much more I want to do - and time keeps on slipping, slipping.

I just don't want to have it end.

Face Your Fears

I know I know, it is easier said than done, but at least try!

To be honest, just about everything I have done on my "adventures" (including my day to day not so high pressure life - seriously, my stress factor is dust and dog hair and keeping the house looking clean).

It has been mentioned from time to time (OKAY, I harp on occasions) but it is something that needs to be revisited.

Let me explain something first.  To me there are fears and there are phobias.  A phobia to me is something that can literally paralyze you.  Okay, so they can be the same.  Just thinking about some of mine and how they affect me.  But a fear can be not doing something because you don't know how, or are afraid of looking foolish, or meeting new people.

When I decided to jump out of a perfectly good plane, for example.  There was fear.  No doubt about it.  But not so much that it paralyzed me.  So I  jumped.  Guess what?  It was amazing.

I have issues with meeting new people too. I am uncomfortable.  Yes, I have trust issues.  I feel awkward, out of my element.  What is my element?  My home.  My Kindle. The library.  So going and doing new things requires me to actually push myself.   I am a great actress.  Most people say I look like I am comfortable with new folk.  I try.

Trust me, I can talk myself out of doing something very easily, and stay in my "safe" bubble.

That brings me to phobias.  Yes, you can overcome them, and work on it.  Depending on what it is, you may be able to go it alone, or get a little help from your friends.

For example.  Spiders.  I hate, hate, hate, hate them.  Bugs too for the record (some more than others).  When you live on your own, you have to learn to deal with them.  I am not totally fine with spiders, but now I can smash them to smithereens with something.  Or spray the insecticide on them.  I don't like it, and my stomach flops after I am done, even can have the shakes, but I am not as bad as before.  Trust me, there are some that I will not deal with and run, screaming like a little girl to get a way from, and find someone else to kill the spider or bug.  Just looking at pictures of them creeps me out so bad I get nauseated.

Haven conquered the fear, but I have gotten better.

Now onto the big one.  One that I can panic from.  I am terrified of water above my head.  I mean, when I first started this venture, full tilt panic.  But I like the water, it is peaceful when not storming - so go figure.

I started facing the water fear four years ago?  I made a dream trip to Bali.  I always wanted to scuba dive somewhere the water is clear.  I can swim underwater, so of, go figure.  I never said this made any sort of logical sense.  My swimming ability has been drastically reduced since they removed the left hamstring.  I never realized how useful the hamstring was in swimming until I tried.  OH, yeah, I have been afraid of the water since I was around 10.  Nearly drown.  Yes, after that I learned to swim, but it didn't help much.

The instructor was really understanding.  I wouldn't call what we did diving, but I got into the clear ocean, when down a few feet, came up, went down a few more feet, came up, did that probably five or six times before panic starting edging in.  The water being so clear was a help I believe.

I also dislike smaller boats.  I am afraid they will flip, and I'll be in deep water that is murky and can't see in.  Paddle boats aren't too bad, they seem harder to flip over.  Canoes on the other hand. Well....

One of the times I was visiting New Orleans, Jim, Liz, and I went to City Park.  They didn't have any kayaks, but they had canoes.  Jim and I had one, Liz I believe got the last kayak.

I had a death grip on the sides of the canoe.  But gradually I relaxed, and started taking pictures.  Oh, there were a couple times I grabbed back on the boat with that death grip, but I made it.

Today I got into a kayak.  They had an intro to kayaking for seniors, so I signed up for it.  I made myself get up at 06:00 to go.  Took care of the dogs, made coffee, grabbed a sandwich for a snack.  I was set.  Got into the car, my mind started coming up with all the reasons why I SHOULDN'T do this.  All I could think of was the kayak flipping over and me being stuck underwater.  OR just flipping it and being embarrassed.

Gritting my teeth, I  drove to Curtis Lake Park.  There were a total of seven people there for the class, everyone else had been in a kayak before, on vacation or with rentals.  They wanted a better idea of the right way to kayak.

They had us all introduce ourselves and explain why we had taken the class.  It was my turn. "Hi, I am Jean Lee, and I am here to face one of my fears. I have never been in a kayak before."

To say getting in was a bit awkward puts it very politely, but I got in and didn't flip it.

The one volunteer could tell I was a bit apprehensive, and she talked me through a couple of things.  I finally relaxed (still had a death grip on the paddle) but I was able to stop and just be.  Whenever I got antsy, I stopped, breathed and was just there.

Rowing got a bit frustrating for me.  I rowed like a drunken sailor.  After awhile, I was doing it decently, and could feel the difference in the kayak movement, but as soon as I realized I was rowing correctly, I lost the rhythm.

Would I do it again?  Yes.  Would I still be afraid?  Yes.  There is a trip they are doing Tuesday from Crows Nest, and if I didn't have to get my stuff together and packed for Adult Summer Camp, I'd go.  Yes, I pack and unpack just so I can Tetris everything into the smallest space possible.

Come to think of it, I will be doing this again at Adult Summer Camp.  There is even beginner rapids.

What fear have you faced?  It doesn't have to be a big huge effort.  Sometimes, just the act of a person walking out the front door is facing a fear.  For some females, walking out the door with no makeup on is terrifying.

So what little fear have you faced today.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I mean really!!

I wish I had Breast Cancer instead, said no sane person ever

Well, that was your first mistake.  You thought I was sane.

Why would I say something awful like that?  Let me explain before everyone gets their panties in a bunch and stuck.

Breast cancer is the most common form of cancer in the United States, with approximately 249,000 women diagnosed last year. Sarcomas?  Approximatly12,300.   That actually is all soft tissue cancers.  That is a big difference.  That over 230,000 cases means more research is done and new treatments come out regularly.  There is more fund raising, more financial help (if you dig and look), more options available for treatment.  A better chance for survival.  This morning on Good Morning America they did a bit and the numbers of survival are higher than ever.

Actually this is rather exciting, there is a new treatment for metastatic breast cancer, just approved!https://www.upi.com/Health_News/2017/09/29/FDA-approves-new-treatment-for-metastatic-breast-cancers/7571506697863/

They are coming out with new treatments, trials, and ways of detecting it, which is amazing.  There is funding to help stop it.  To help those with it.

Sarcomas?  Not so much.  Look it is a game of numbers.  Sarcomas are rare, and of the 12,300 there are 50 typed.  Some they can't identify, so they are lumped together as "unidentifiable".  Not much research done, although there are some out there that are swimming against the tide.

"If caught early, sarcomas can be treated effectively with surgery. However, if the disease spreads, or metastasizes, treatment with chemotherapy does relatively little to slow disease progression or improve survival. The median survival time after diagnosis of advanced disease is 12 to 16 months. In 2015, 12,000 people were diagnosed with soft-tissue sarcomas and 5,000 died of the disease, according to the American Cancer Society." Columbia University Medical Center

41% die.  I am going to die.

Last year, Latruvo was fast-tracked through the FDA.  It is the newest treatment.  It was a huge break through in decades.  You want to know what they got excited about?  Not that it can end the cancer, but perhaps extend the life by a year.    Here is the article on it with more information:  https://www.news-medical.net/news/20160721/Adding-new-monoclonal-antibody-to-chemotherapy-improves-survival-in-soft-tissue-sarcoma-patients.aspx

I can't find any references to any break troughs from prior to that.  In reality, if it is live or die, a year is good, as long as the year is good quality.

What is the point?  I have cancer, it is called Sarcoma, so do many others.  The point?  I wish more people would acknowledge the rarer cancers.  More research would be done.  More help available for those with Sarcomas. 

It won't happen in my lifetime, but soon I hope.

The Adventures of Yondelis, the sea sponge chemo

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

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

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

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

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

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

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

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

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

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

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

Living with an Expiration Date

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

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

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

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

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

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

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

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

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

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

Now go seize the day.

An Attempt to Explain Me

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

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

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

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

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

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

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

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

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

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

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

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

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

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