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.

Depression

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Visit to a FB Post - The Gift of Experience

I posted this on Facebook a year ago, and to be honest, I forgot about it.  That is until today when someone liked it.  I re read it and started wishing I would have rediscovered it at the beginning of the hectic holiday season.  

Everyone is in such a hurry to find the perfect gift, rushing here and there, using up their life energy to find it.  What if that perfect gift was as close as your phone?  You know what I mean, that thing you are probably reading this on.  It really is a multi functioning tool!!

Not only can this be a perfect thing for someone on your list, it is also a gift to yourself.  What a bargain! Two for one!

I was chatting with a friend a while ago.  She was lamenting over getting a gift for a mutual friend.

My suggestion was - give her an experience.

Her response - I can't afford to give an experience!  That stuff is expensive!!  Then I explained.

The gift of an experience is not a big trip.  It could be something as simple as finding a new coffee roaster, going there and having a cup of coffee enjoying the fact you are together chatting.  Or to a bakery that is out of the way known for pie, a card or letter, whatever your imagination can come up with.  Maybe a trip to the zoo.  Or simply sitting on a park bench enjoying the weather having lunch.  Or a phone call just to laugh at things in memory lane.  Yes, phone calls are gifts.  (Even to those of us who have come to hate phones)

A gift of experience doesn't have to be something big, heck, it doesn't even have to be from someone else.  You can give yourself gifts of experiences.  

The gift is connection.  That connection will last longer than things.

Think of it this way.  Things are just things.  They can be useful, or decorative, even wearable.  But they get old and fade, maybe break, go out of fashion or just become a bother because it is one more thing to handle or deal with.  

An experience is forever!!  The memory is always there accessible. The laughter or the simple serenity of the moment the sunshine feeling warm on your face and the breeze gently blowing your hair.

So we all can give each other and ourselves those memorable gifts.

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.

Lessons I learned - So You WON'T Have To

I must freely admit, this time I screwed up.  BIG TIME.  I took answers I got at face value, if there were any other pertinent information, the person I was speaking with would tell me.  Or so I assumed.

Part of the problem I am dealing with right now is my own damn fault because I got lazy and did not ask the questions I should have and advocated harder for myself.

It all has to do with Part D of Medicare, the drug part.  You must get a separate insurance policy to cover drugs.  Well, I got a letter that said I qualified for a policy at no cost.  After reading the letter, I am thinking to myself, well, let me make an appointment with the insurance councilor with the Department on Aging and ask a couple questions.  I was going to make sure my drugs were covered.

Four Tablets for breakfast every day.

The appointment day showed up, I go and bring all the papers I got saying the same thing.  I did not have to do anything, I qualified for this drug coverage.  I shared my concern about my drugs being covered.  She looked up the Votrient, Zofran and Compazine.  All were covered.

The relief I felt was palatable.  I felt as if a huge weight was lifted from my shoulders.  I could have danced.  I was so relieved that all the other questions I had intended to ask flew out of my mind.  Hence one of the lessons.

One of my two best friends

I had wrongly assumed if there were a deductible or co pay she would tell me since she was looking at the policy information.  I was wrong.  I should have asked. 

A week ago, Monday, I got a bug in my head and called the insurance company since I finally got the insurance card with policy number and contact information. 

I knew I was in trouble when I got a busy call center.  There was all kinds of background noise, and the line kept cutting out.

She kept trying to give me information I was not asking for.  I finally told her to stop.  I wanted to know if my prescription drugs and chemo drug were covered.  Please answer the questions as I ask them.

Votrient, yes.  Zofran – only the generic, but it must be preauthorized. 

My second best friend.

Anti-nausea medication, the generic form needs preauthorized.  So, I get the phone number the doctor is going to have to call to get it done.  (The chemo drug does not need preauthorized).  Compozine, generic covered, no preauthorization.

Now I ask, are there co pays?  She says, yes, but the co pay kicks in after the deductible was met.  Me: “Deductible?  What deductible?”  Who ever heard of a deductible on a drug plan? 

Her reply “$415.00.  I sigh then ask ok, what are the co pays after the deductible is met.  (I am thinking, ok I can meet that with a couple of the Zofran prescriptions, that stuff is not cheap.)

She starts with the co-pay amounts, since the Zofran is tier 2, $3.00, the Compazine is tier 2 so $3.00.  I am thinking so far so good.  Then she says the Votrient (my chemotherapy drug) is tier 5, so it is 25 (at this point I was thinking $25.00 during her pause.  I could live with that) then she says percent.  I choke.  I repeated back 25%??  That is $3250.00!!!  And only if the pharmacy you work with charges the same amount as the one, I am dealing with now.  The cost for this chemo is $13,000.00 a month.  (Trust me it is cheaper than some of the other chemo I have been on over the years).

So right now, I have applied to the manufacture for grant money to help cover the copay on the chemo.  And I am scrambling to find other means to cover by applying to foundations.  One told me they could not help me because they do not have funds to help people with my kind of cancer.  Another said they were a last-ditch foundation, and once I am turned down from the others, they may be able to help.

Now this is what I want you to learn from my mistakes:

1. You are your own advocate.  Do not assume that just because a person deals with things regularly they will give you all the information you need.
2. Sit down before you talk to whoever, and think about the information you need.  Write those questions down.  Bring them with you.  Get others to suggest questions.
3. If they start going down a side topic, bring them back to the question you asked.  And tell them to answer that question first, then the next question.
4. If you do not understand what they are telling you say that.  Just say, wait I do not understand.  Make them explain it to you.
5. There is no such thing as a dumb question (especially when it comes to health care and insurance)
6. This is so important it needs listed twice:  DO NOT ASSUME THAT YOU WILL GET ALL THE INFORMATION YOU NEED EVEN WHEN DEALING WITH “EXPERTS.”  YOU NEED TO ASK QUESTIONS.

Now that I learned to ask more questions, I hope you have too.

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I mean really!!

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

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

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

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

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

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

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

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

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

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

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

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

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