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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And now you are up to date!

The Four Emotional Stages of Terminal Cancer

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

Stage I - Devastation & Anger

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

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

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

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

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

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

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

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

You don your shiny armor and brave face

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

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

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

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

In reality this stage can be exhausting.




Stage III - Acceptance

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

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

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

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

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

Stage IV - Exhaustion - Isolationism

You are tired before you even start

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

You try to protect others by isolating yourself.

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

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

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

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

You convince yourself it is for everyone's best

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

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

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

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

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

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

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

You hide your feelings

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

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

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

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

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

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

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

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

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

Always, always be kind to yourself.

The Most Asked Question - How do you do it?

I'm not sure that today is the best day to be writing this; but the words are rolling around in my head and I can get on the laptop to put them into "print."  The reason I say that is I am not in the best of head spaces at the moment, but maybe that is not so bad.  It means a glimpse into the other side.

I don't know how I do it.  Part of it is guilt.  Does that surprise you?  Yes guilt.  I feel that I would be abandoning the people I love.  Abandoning my son and daughter, my sisters, my friends.  I feel the guilt because I can imagine the sadness that my death would bring them.  I do not want people I love to feel sad because of me.

Here is the other side of the guilt.  I feel guilty for still being around when so many that have been diagnosed after me had passed on.  Survivor's guilt they call it.  It sucks.  I've lost too many people to cancer.  Waiting for it to take me is like waiting for the other shoe to drop.

How do I do it?  I don't know.  I am tired.  I  may have mentioned it before in a post.  But I am tired of cancer.

Once was enough, 2003 was more than enough, but no for some reason I drew the lucky number in the cancer lottery.  2011 was awful.  I lost 2/3 of my right lung that year, and part of my intestines.  Spent three quarters of the year doing chemo, surgery, and being hospitalized.  Even lost a portion of my right pectoral muscle that year.  That was the year the earthquake hit Virginia.  I was in the hospital when it hit.  Then 2013, 2014, twice in 2016.

The first time in 2016 was May.  Tumor in the lung showed up.  Surgery, they got good margins, no chemo.  Then again in November.  I started feeling like I couldn't breath because of bronchitis or walking pneumonia.  Finally went to the ER.  Boy was I wrong.  Surgery was scheduled right before Christmas.  I thought they would just go in remove the tumors, but no, all they could do was drain the lung and debulk the tumors.  They are in my left lung, on the sack of the heart, in the lymph nodes, on the Vena Cava, and aorta.  Surgery really isn't an option anymore.

So yeah, I am tired.  I am tired of the trips to the doctor's office and his smiling face, telling me how great I am doing even though they really can't do anything for the cancer other than try to keep it from spreading, which really has been proven fruitless.  Eight months on a chemo and it spreads.  Since January 2017 I have been on three different chemo drugs.

I am tired of the blood draws, the CT scans, waiting for the reports.  I am tired of them trying to make everything sound so up.  Just be straight with me.  Did it spread?  Yes or no?  What is the next drug?  Just tell me.

Right now they are trying to give me quality of life rather than quantity.

The chemo I am on, Votrient, is the easiest chemo I've been on.  So far my side effects have been nausea, some fatigue, some shortness of breath, and my hair changing from dark brown to varying shades of silver and grey.  Salt and pepper.

I am tired of having to remember to take poison every morning.  800 mg of it.  Yeah, my breakfast is 800 mg of Votrient and water.  I have to wait about 15 minutes before I can have my first cup of coffee.

I am tired of feeling weak.  The Yolandis that I was on caused major breathing issues, so my physical activity was limited.  Kind of hard to want to do something physical when you can't breath.  Now on the Votrient the breathing issues are still there, but improved 100%.  I need to start working out to get into better shape, but I need motivation.

I am tired of feeling like I am a drain on my family and friends.

I am tired of worrying about co payments, taking meds, fighting the bills that were supposed to be covered.  Tired of worrying about gap insurance now I am on Medicare.

Did you know that insurance companies can pick and choose the areas (counties) they want to cover?  They don't have to offer gap insurance to everyone?  If I were 65 I'd have plans available.  Since I am not there is only one plan for people under 65 on disability, and they don't cover my area.  Medicaid is out because they said I am $200 over their cap on qualifying.  So now I have the 20% to cover that Medicare doesn't.  Grateful they cover 80% of the doctor's and hospital, but, yeah, I'm tired of worrying about that.

I am so tired of needles and blood draws, and reading then rereading the reports.

I am tired of feeling like if I show any weakness people will think less of me.  I am tired of feeling like I whine.

My daughter Jasmine, my dog Sasha, me, my dog Bailey

I am tired of the isolation.  I feel alone.  The days are all filled with the same thing.  I try to motivate, but it is really hard some days.  Yes, there are days I just go back to bed.  There are some days that I don't want to get up, but my dogs remind me that they are my responsibility and I have to take care of them because they love me.

Don't get me wrong, I don't wallow in pity.  I am working on socializing more.  I volunteer twice a week at Mary Washington.  One day for three hours we sew cough pillows for patients.  And the other day I volunteer I work in the Gift Shop.  I also go to "Meet up" things, there is a group of single people 50 and over that meet up and I try to go once a month.  I need to make more friends locally to have coffee with and talk to.  Like I said, I am working on it.

I am so tired of feeling like I am in white water rapids being rushed down the river with no hope.

How do I do it?  I don't know.  I journal.  Everyday.  Even if all I do is write down that I feel like crap.  I try to write something down every day to get it out.

I write this blog, yes, I don't write often, and it may not get read much, but with it I am trying to show my inner feelings and frustrations, so it is an outlet.  I actually end up feeling better by the time it is published.

How do I do it?  In my heart I know that my family and friends are there.

An update on the Lowe's job.  I emailed my supervisor about my concerns when it came to the customer service, and my inability to lift the 5 gallon buckets, and my limit to 15 hours a week.  Along with the concern of being scheduled three 8 hour days in a row.  (Down stocking and fronting on a four hour shift exhausted me, and I was honest with them in the interview I am not in shape, and I need to work on stamina).  After not hearing any response for five days, I figured that maybe I should work on getting in better shape before I try working there.  So I resigned.  I really didn't feel comfortable my concerns were not address.

I haven't given up looking for a part time job either.  There is something out there that can help me financially, physically and yes, mentally.

Thanks for reading this, I am in a better head space now.  Time to go have some breakfast and vacuum.

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.

Fatigue - Or a Little "Whine" with that?

I know, it is past time for an update.  My sister has been asking me for one so she can post it to the GoFundMe campaign she started to help me.  So, I am going to update my blog and send her a copy of this.  It isn’t that I don’t appreciate all the help and want to let people know what is happening, sometimes it is just hard to share some of the things that go through my mind as things progress.

You see, if I am being truthful, not only am I updating folks on the progress with the chemo, but the other issues, like emotional, and the such.  Sometimes it is really hard to put things into words.  Oh, there are times that I am very eloquent and can express what I am thinking but unfortunately many of those times are when I do not have access to put them down.  Well, at least they sound good in my head.

Right now, I am tired.  Physically and emotionally. Frustrated.  Oh, so frustrated.  I am tired of fighting the system.  I applied for SSI, was turned down because I had a total of $2000.00 sitting in the bank.  I applied for disability.  Got turned down because I am working.  I asked how am I supposed to pay for my insurance if I don’t work? Rent?  Food? Utilities? What I make doesn’t cover.  I am a penny pincher to the max, so I am not living above my means.

To be honest I want to work.  I want a job.  I want benefits.  But I am getting so tired of the hunt.  I won’t give up.  I’m still looking and will continue to do so.

Emotionally, I am tired of fighting. I am tired of fighting the system.  I am tired of fighting cancer.  I just want a normal life, go to work, save a little bit, travel once in a while, and retire.  I don’t want to keep working till I die, and I am so tired of cancer.  I am tired of living with it, I am tired of having so many doctors, I am tired of the chemo killing me.  Did you know that the drug they use in conjunction with the Lartruvo is damaging my heart?  That is on top of what was done in 2003.  I’ll be going in for an echo cardiogram with a Doppler to check my heart.

Even with that, there is no guarantee that the cancer will be gone until the next time.  What happens if it isn’t gone?  A different type of chemo.  If that doesn’t work?  A different type of chemo.  Who knows clinical trials. Remember it is inoperable.  Has something to do with the location, you know, the heart thing.  Even if it is gone, how long until the next time?  I had it removed from my lung April 2016, it was back in November.  Yes, it wasn’t officially diagnosed until January.  But you get the idea, six months.  The time frame between was only six months.

So far, the chemo is going well, I suppose.  I say it that way because I haven’t landed in the hospital with a crashed immune system.  Most of the side effects have been fatigue, headache, nausea, loss of appetite, I am losing the sense of taste, which really sucks.  The hair is slowly falling out, but the regrowth of the leg hair is so minimal it is nice not to have to shave for a change. 

I’ve lost weight.  I check my weight every couple of days, and weigh myself in the morning about the same time.  I am down to 107 pounds.  I do try to eat.  But it just isn’t sticking.  That and the cold I picked up somewhere isn’t helping.  I am being very cautious of that, don’t need pneumonia.  Maybe that is why I have been craving soups.  Hot soup.  Well, that and liver and onions.  Hot soup with the steam helps, and it warms me up.  The liver, probably because the iron is low.

The fatigue is the worst.  Well, after the loss of the sense of taste.  Last Friday, I woke up feeling great, full of energy, and felt good.  Which was surprising since I had chemo the day before.  Felt that way most of the day, even went out to dinner with Jim, and Nate.  Saw Logan.  Good movie, it ended two story lines, in a good way.

Unfortunately, most mornings I do not wake up like that.  I am tired and cold.  I am always cold. I get going and get to work, feeling ok.  Even think about going to the grocery store.  But usually by the time I leave work, I don’t feel like trying to shop.  I just want to go home, make some hot tea and put on warm fuzzy clothes.

I am down to one job now.  I was working seven days a week.  The last blood test showed my immune system starting to lower itself, so after some discussion, I told the winery that I wouldn’t be working there for a while.  It is the one place I was exposed to lots of people, kids (they have a play room there and a fantastic bistro).  Being a hospitality service, people show up to work sick since the only way to make money is through tips.  My other job, I see three people in the day.  So, not as much exposure.  Sad thing is between the two jobs together, I don’t meet the roof over the head, insurance and utilities.  I need to find a new job.

On the up side, I got to cross something off my bucket list.  Seeing New Orleans during Carnival.  I wasn’t there for Mardi Gras, but the party leading up to it can be just as fun.

I had enough miles built up on a credit card for an economy round trip to NOLA.  The ride down was lousy, kid sitting on her parent’s lap, kicking the back of my seat.  Spent a week with my son, going to parades and eating.  At least I had a sense of taste then.  It was fun, and I really enjoyed the Chewbacchus Parade.  Basically, it was a Com a Con parade. 

Ok, I am done whining and I am going back to work. 

Dance Six continues.....

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

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

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

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

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

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

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

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

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

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

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

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

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.

The Story of a Tattoo

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Make sense?

Phoenix by Robert , Black Dragon Tattoo, Uraban, Md

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.