What does Terminal Look Like?

I am in a very interesting position.  I have cancer and I am terminal.  Yes, it is.  It is amazing to my how many people have preconceived ideas on what a terminal cancer patient should look like. Or for that matter what a cancer patient looks like.

There are many of us that do not fit those preconceived ideas, we almost look normal.  Whatever normal is. I don’t fit into any of those preconceived ideas.

What do I mean preconceived?  Well here are a few thing I have people tell me.

People who have cancer and are getting chemotherapy are bald. 

No.  Absolutely not.  Chemotherapy drug are harsh.  They kill cells.  Both healthy and cancerous.  But not all people go bald.  In fact, there are some therapies put into use right now that actually help the patient keep their hair.  It is cold therapy.  Not everyone is able to use it, and it may not work for as well for every patient.  But for those who losing their hair would be horrifying, it gives them options.  Some people only have their hair thin out.  One year my eyelashes fell out along with all my hair.  That was hard to deal with.  I like my eyes.  My eyelashes are my vanity.

That was my experience with the antibody chemo therapy - thinning hair.  I hated it.  I’d rather be bald.  I kept my hair buzzed. To me it is better to be bald rather than have balding spots or thinning hair. 

All cancer patients are always sick and vomiting or at least nauseated.

When I went through cancer in 2003 I would have said this is the truth.  But over the years they have made huge leaps in anti-nausea drugs. 

Don’t get me wrong.  We still, well not everyone, but I still get nauseated.  But the anti-nausea drugs work wonders.  There are even what they call “break through” anti-nausea drugs.  Basically, they are a medication you take when your normal medication does not stop the nausea, and you feel like vomiting up dinner from last year.

Cancer patients don’t eat. 

Well, the further on in your chemo, some may not want to eat.  Some don’t eat early on because of sores that can developed in the mouth and throat.   Believe me when we feel like eating, we eat.  Mainly because we know there are those days we don’t feel like it, or will feel like crap.

I have days when every couple of hours I am eating something.   Doesn’t matter to me healthy food or not.  Calories.  That is all I am trying to get into my system. I know there will be days I don’t want to eat, or eat very little.  So, when I can I do.  My body will store it and when I need it I will have it.  Unfortunately, there never is enough stored.  

In fact, once this is published, I am going to have pumpkin pie.

All cancer patients are extremely thin. 

Um.  No.  Depending on the treatment, and the amount of steroids given.  Yes.  Steroids are routinely given to cancer patients.  Helps with some of the side effects.  Unfortunately, because of the different body types and reactions, some people swell up.  For those patients it is heart breaking.  I have no idea why it happens.  It just does.  

Not all patients are deathly thin either.  Some may get to that point later in treatment.  But not all.  Everything depends on the drugs used (if they treat with drugs) and again the body’s reaction.

All cancer patients are tired all the time. 

Well, there is some truth in that.  But not 100% of the time.  Depending on the chemotherapy, and cycle, a patient can feel exhausted one week, tired the next, and almost normal the following.

One of my treatments a few years ago was the MAIDS treatment.  Chemo for a week, then two weeks off during which I received radiation therapy.  First week I felt like crap, second better.  When the time for chemo came around again, I felt pretty normal.  Later maybe cycle 4 or 5 I would be tired.  Exhausted all the time by cycle 6.

Terminal patients look like the dead walking. 

Well, maybe nearing the end, and some prior to but not all.  Just because I don't look half dead doesn't mean a thing.

Cancer patients are sick all the time or should always wear masks and stay away from everyone.

Not all the time.  We are more susceptible to getting sick if the chemotherapy kills off our white cells, or interferes with the production of the red blood cells,

Usually when that happens, we end up in the hospital, but not all the time.  A couple of times my blood counts were way down, but I felt fine, even felt almost "normal". 

When the blood counts are normal for the most part we are normal.

Cancer patients are always depressed.

No.  Not all the time.  Yes, there are times we get depressed.  It is only normal.  It gets tiring having blood taken, running to the doctor, treatments, hospital visits, MRIs, CT Scans and the such.  

I prefer to laugh and go out and enjoy life, but yes, even I get depressed once in awhile.

I am terminal.  For six months I received anti-body chemo therapy. Every other week. My hair got thinned out, so I buzz cut it.  I’d feel good the day after. But then for about three days I’d be tired.  The further along in the cycles, the longer the tiredness lasted.  Lack of appetite usually comes from the way chemo affected the taste buds.  Everything ends up feeling yuk, and tasteless.

We have changed my chemo to Yolendes.  Sea sponge derivative.  I have had one cycle.  I get chemo for 24 hours.  I go home with a working pump, go back the next day and have it removed.  The day after I feel good.  Again, those steroids.  The third day I start feeling, sick.  Like a cold or flu.  Then it gets worse for about three or four days.  Gets better after that.  Exhaustion so bad that getting out of bed is a feat in itself.  Eating?  No thank you.  Drinking?  Sipping water every so often but not enough.

Chemo affects the production of white blood cells.  When I was on the Anti-body I got Neulasta.    I prefer the Neaulasta and its issues to the shots.  Nupegen shots burn like hell.

They skipped my second round of chemo with the sea sponge.  Because the chemo made my white cells crash.  If you do not have a good blood count, they don’t do chemo.  They would be endangering your life if they did.  I assume it is the same way with all chemo.

I spent a few days in the hospital because of pneumonia, and it was after chemo.  The doctors at the ER were spazzing out  because my counts kept dropping.  I kept telling them it was the chemo treatment.  They finally decided that a blood transfusion would be a good idea.  They actually do help.  Bumps up the red count.  

I get told you can’t be terminal.  You look good.  Your skin is in good shape.  You don’t look sick.  I have had three weeks to recover from that treatment, so I look better.  The further into treatment I get the longer the side effects will last, and I will end up fitting that image people have of terminal. Well, maybe.

But I plan on doing things my way.  Treatment is to slow the cancer, or keep it in place.  It won’t cure it.  I am going for the quality of life.  If the chemo lets the cancer spread.  We are onto the next one.  If the time spent recovering becomes longer, or my system starts crashing and I end up in the hospital more, the treatment changes. Or I just stop chemo totally.  Boy, then I will end up fitting that image.

Please, just because a cancer patient doesn’t look like a dead man walking, don’t assume they are lying, or exaggerating.  Just because we laugh, and joke and look strong, don’t assume.  Cancer patients are great actors and actresses.  I know.

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

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

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

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

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

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

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

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

41% die.  I am going to die.

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

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

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

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

The Adventures of Yondelis, the sea sponge chemo

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

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

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

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

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

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

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

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

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

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

Random Emotions

If someone is reading this, I thank you.  I don't know if anyone really reads or pays attention, or even thinks about some of the stuff I write.  Opening people's thought processes and perhaps helping them view things in a minute change of light would be nice but, I don't know no one really says anything.

Don't expect a happy, serious, uplifting, courageous, point of view of knowing I am dying.  No laughter this time.  At the moment I don't have any to share.  Lots of people with cancer will get to this point at one time or another.  Maybe it just took more for me.  OH, and please if you are offended by cussing, well, you may just want to pass this one up.  This will be one that is raw emotion, no filter.

Had the 24 hour chemo Thursday.  Took the pump off Friday, felt pretty good.  Woke up Saturday, feeling ok, kinda rough, but gotta live life.  I went to a Toastmasters, and was there maybe 20 minutes before I had to leave.  Sat in the refreshment area for another 20 minutes till I was sure I was ok to drive home.  Lost three freaking days to nausea and exhaustion.  I don't mean the sleep another 15 minutes.  I mean the type where your body says fuck you you aint' doing shit.

Anyone who has been to my home knows I like it neat and tidy, my oasis.  My idea of doing anything for the past few days was opening a can of soup, draining the broth in a bowl, nuking it,  eating part of it and be happy that I put the bowl and can on the counter rather than dropping it.

What does it mean that I am told I am brave?  Hell, I don't know.  I have no choice in the matter.  I pulled the short stick on life.  SIX fucking times.  Seriously, once wasn't enough, I just had to make sure that it was as bad as I thought.

Brave, yeah right.  Bullshit.  I would say I made this bed, so now I have to lay in it, but I didn't, life made it, but I still have to lay in it.

Graceful?  Courageous? Dealing with dignity?  How is that, someone please explain to me.  Because I laugh?  I have no choice.  Crying isn't an option.  Shit I remember the last time I really cried, and no one  that was around knew what to do or how to react.  Come to think of it, I don't know exactly how to react to someone crying.

So many think I have my shit together.  Or that I have my little ducks in a row.  Those little bastards are flying everywhere and shitting on everything.

I am going to die sooner rather than later.  Wrapping your head around something like that isn't the easiest thing to do.  Although, I have had since 2003 and several trial runs to do it.  Nothing like it is inoperable, and spreading to make trying new chemotherapy sound appealing.  Hell yeah, use me as your ginneau (shit I can't spell that) pig, I'll give it a go. Maybe the cancer won't spread!  You see the line rounding up around the building.  A huge line of one.  ME.  At least where I am.

Dying.  I don't want to die.  I want to find a fucking job and work, pay my bills, and make my children proud of me.  That is what is most important to me.  I want them to be proud of who I became, not the lost idiot who had no back bone I was.  I want them to have more memories of me that are fun and good.  I don't want to go.  Not yet.  I am not ready.  But it is something I have to face every day.  I have always been proud of them.  Even when I had my head up my ass.  I knew I did two things in my life right. 

I want my sisters to learn to communicate better, rather than the knee jerk reaction of lashing out when they think they have been wrongs.  Temper has always been a bad thing in the Caputo family.  Problem is it flares fast, and lasts.  They need to step back and ask, why did you say that?  Or at least think before they speak or type.  The hardest thing in the world to do.  You have no idea how many times I have typed something just to delete it after I calmed down.

All my friends I want to know that I am horrid at  communication.  Always have been unless it is the written word, and then I am bad because I forget to mail stuff.  The only person I ever was 100% jolly on the spot when mailing something was when Jim Sr. was in college.  I knew how many days it took a letter to get to him and back, and I would read each letter, write and run to the nearest mailbox with the soonest pick up.

Honestly, I am not ignoring you.  I think about my friends constantly.  I know actions speak louder than words.  To be honest, I don't have the words to express what friendship means to me.  I have always been that odd ball loner kid.  I quake in my boots in social situations.  I actually am introverted.  I hide it well.  Huh, I was that odd ball loner kid, and I am an odd ball adult.  Lately, it seems that I am living on something that is starting to become an island.  Everyone is moving.  One of the reasons I made myself go to Toastmasters, I am becoming that crazy lady with cancer and two dogs.  Guess I will have to see what Senior Activities there are.

Back to having my shit together and dying.  I don't have my shit together.  I am the most unorganized, lost soul I know.  (Please don't take the lost soul religiously).

I only started pulling my head out of my preverbal ass back in 2008.  I was becoming a person I didn't like.  Rescue can do that to you if you stay too long in it.  I stayed too long I think.

So what happened in 2008?  I got a call.  There was a job opening in BaseTel.  I said ok, well after I asked my ex, turned the shelter over to a great group of people who are running it.  (I literally stepped away, thick headed ownership issues).

Even got divorced in 2010.  Hope he is happy with whoever he is with.  Seriously.  Everyone deserves to be happy in this life.  As long as they are good to each other and good together.

Over the years here, I have paid off bills, helped others anonymously, even had a nest egg.  (Had is the active word here.)  I thought the worst for me was when the contract ended and I lost my job.  Been looking for one ever since.  Phone interviews, even an in person couple, but no job.

Guess I was wrong when I thought the worst happened.  Now I need to figure a way to get a job, pay bills, do chemo that makes me sick, afford insurance (car and health), keep a roof over my head and food on the table.  Not much.  People tell me not to worry about money.  Well, that is hard.  Especially when it pays for the things that keep you alive.  Even if the time is limited.  I think the one thing that all cancer patients worry about is money.  I couldn't imagine being faced with the possibility of being homeless and having cancer.  Even if you have someone you can move in with, cancer wears  on everyone, and you could soon become that anchor around someone's neck.

At the moment I don't feel as raw as I did when I started.  I've calmed down, there are still lots of things I need to address, but right now, I don't want to.  But I can't let that become a habit.  Not doing something.

Do me a favor.  In the comments section pick a number 1-52.  The first six numbers that are different I'll invest a dollar for a lottery ticket.

What will I do if it wins?  Pay bills, support sarcoma research, random acts of kindness to strangers, help family and friends.

Being Termnal or Having an Expiration Date

Many people are uncomfortable with the fact I am open with the fact I have an expiration date.  That is unfortunate.  They seem to miss the in-between.

What do I mean in-between?  The in-between time from finding out you are going to die with an approximate time frame to the point where you actually check out of this life.

I guess people don't know what to expect.  I think they seem to expect me to be weak, and feeble.   When they see me, they see someone who looks healthy.  Ok, well maybe a bit anorexic (down to 105 pounds) yeah I do have some dark circles under my eyes.

Sometimes I get the feeling they want to ask questions, but don't want to offend or are afraid of the answers.

Personally I wish people would ask questions.  Questions make you think, and if you think you can solve things.

Having a sort of rough day

I woke up feeling ok.  Actually slept through the night.  Got up only once!  Seriously for me that is amazing.  I try to drink plenty of fluid to flush out the drugs.

But still I am having a rough day.  I know it is basically hormones gone crazy.  Long lasting drugs have long lasting effects.

I felt ok, then I turned on the TV.  What a shock.  So much negative things going on, so many people needing help.  I say my little prayer for everyone.  It is a simple one, may the world and all it's people know healing, both physical and mental, have a roof, and food.  But most of all develop the willingness to try to understand one another, accept we are not the change and learn to work together despite the differences.  Oh, and for me, I'd like to win $100,000.00 after taxes and giveaway to others.

So why is it a sort of rough day?  Regular life seems over whelming right now.  Actually, I feel better than I did a couple hours ago, I sat outside and listened to the birds and watched Bailey and Sasha run and play.  It helped calm my mind and emotions.

Still a bit overwhelmed.  Just by things that need done, lists that need completed, budgeting, needing a job.  I don't think the fact my left foot/leg still is swelling and aching.  They can't figure out why either. I don't think the limpy gimpy helps the job hunt.

A woman I know of (because I know her children) cancer is back.  They are draining her lung today.  I pray it goes well and somehow it goes away for her.

So many people with cancer.  So many with it coming back.  It is overwhelming.

I am stressing over health insurance too.  Cost.  It is going to go up, I know it is.  Do I stay with the Cobra for one more year or try for Medicare?  Social Security said, "OH, you are disabled!" but the disability payment doesn't start until December.  No back pay either.  You have to be out of work for 5 months.  The whole thing is a pain in the ass, but something is better than nothing.  And unemployment doesn't cover because of the disability.

Oh, and folks, just because someone gets disability, don't assume it is easy street.  If I pay for health insurance the mortgage/rent is short, or visa versa.  Not to mention other things like electric, water, gas, car insurance.  The only reason I say this is because of a comment someone made.  Oh, so you won't have to worry about anything once it kicks in.  No, people still have to worry, and scrimp and save.  So do me a huge favor, the next time you hear someone is on disability, have a bit of compassion for them and say a little prayer that somehow things work out for them.

Ultra sound showed no clots.  X-ray of the knee show a bit of arthritis.  X-ray of the foot and ankle showed a heel spur, which I had no idea was there, and some arthritis, which again I didn't know was there.  The top of the food aches and sometimes it feels like it is burning.  Oh, and the skin on the one side is sensitive.  You know the kind of sensitive that when you touch it is sorta hurts, but you touch it again just to make sure you felt it right?  Yeah, that kind.  You can't help but touch it.

Oh for the record, yes I did eat breakfast, so my off day isn't because of that, no I didn't drink as much water as I normally do yesterday, but I am no dehydrated.

Maybe it is just that damn achy foot.  After a while it can be irritating.

I think I am going to take a nap.  I feel tired.

Speeding Thoughts & Emotions

Wow two in one day.  Amazing isn't it?

I have had an issue with attention deficit for a long time.  I have always dealt with it with lots of caffeine.

It was easy to do as a kid.  My parents made coffee in a coffee urn.  Like a twenty cup one.  They would drink the coffee all day.  Yes, cold.  And guess who was the one that got to go get Mom or Dad's cup of coffee? That lead to me just drinking coffee whenever.

Still love coffee, and have developed a taste for fresh roasted beans, Guatemalan, Peruvian, and Columbian.

Always have had several different thoughts going through my mind at one time, always the one with several projects that seemed like chaos that magically came together in the end.

Yes, there is a point to this.  I have a hypothesis about the new chemo.

Now you are sitting there thinking ok, get on with it what are your thoughts.

My hypothesis is that the Yolandis exacerbates the attention issue, the thought process, and the emotions.  Along with insomnia.

I base it on my morning.  I went to meet a Lawn Contractor to get a quote for Raines Court (no I do not own it, I am trying to help by getting quotes and over seeing work.  I am too old to do this stuff, and physically, not capable to do some of it.)

The Southern Wind Landscaping owner actually called asking if it was ok to be 10 minutes late.  Wow, that is amazing for a contractor.  Apologized when he got there.  In the mean time I was talking to the General Contractor working on the interior.  He speaks English fairly well, but since my mind started racing, and the emotions running like nuts it was not the easiest.

Oh I wasn't nasty or rude.  I knew that the body chemicals are havoc.  But when that happens even the simplest thing turns into a HUGE mountain.

The lawn issues are addressed, and the removal of the wild bushes addressed.  Made me feel better. But then I started making my list for the trip to Lowe's and knowing I need to address items that weren't delivered back on the 18th of September, and I have been going back and forth with them started up the emotional roller coaster again, along with speeding up the thoughts.

Armed with my list, the light that was too big I needed to return and get the smaller version, and information on the order with item numbers of the missing (for the record two toilets and a florescent fixture).

I got to Lowe's at 12:30 left there at 1:30 give or take.  I swear I felt like I was there for three hours, going back and forth from feeling ok to wanting to burst into tears because the toilets weren't delivered.  Never mind trying to keep one thought.

While customer service dealt with their two different systems, once which was down, I rushed here and there grabbing what was needed.  Replacement light, board, outlet covers, floor vents.  Literally I was feeing so stretched out and frazzled, and again wanting to burst into tears.

I kept thinking I cannot wait to get home make ice coffee, sit on the deck and put the gimp leg up.  I grabbed a Gatorade (I crave orange Gatorade when I go through chemo, no idea why.  Never craved anything during my two pregnancies, but I do remember feeling so starved I ate something like 10 hot dogs, give or take).

Got all the stuff to the contractor, he is there working his butt off, amazed that I got two toilets in my car.  He unloaded the car, and I came home.  While I was taking a bag out of the car, I started to calm down.  Which made me start thinking of how this has happened a few time since chemo.  Coincidence?  I don't think so.

All the while I wanted to stop and do a post about the way I was feeling. How things flew through my mind.  The bursting into tears I think was from the frustration of the thoughts flying.  If I could work as fast as they were going, I'd have a spotless  house in an hour and a half.  The one thought I did hold on to was I do not want to just burst into tears.  Not for no reason.  I can't remember the last time I did cry, a real sobbing cry and that is what they would have been.

I can be very grateful, I haven't felt the sadness that comes with those heart racking sobs.

At the moment things are normal in my head.  I am having coffee, and I am going to sit on the deck, listen to a book and look through pictures.  The house still needs cleaned, and my car needs a bath, oil change and the such, but I think the emotional roller coaster I put myself through earns me the afternoon off.

And yes, I am going to talk to Dr. Vaughn when I see  him on Oct. 11th.  Hell, I didn't get mood swings when I went through menopause.

I feel like me.  And that is what counts.