The Holidays and Cancer

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

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

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

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

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

Bailey

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

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

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

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

Sasha

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

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

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.

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.

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?

As the Chemo Drips

So much for posting an update quickly.  I just posted the update I did two weeks ago and sent the copy to my sister.  Yeah, I'm efficient like that.

First, let me explain something.  The fatigue that is caused by the drops in red cell count is telling.  It effects everything.  Your mood, thought process, your out look.  Not that I have had a negative out look, just getting tired of somethings.

I tend to be a bit more cynical and critical when I am tired.  A bit bitchier too.  What can I say - at least I am honest about it.

Life isn't perfect, hell, even when I am healthy it isn't, but it is my life.  To be honest, I was hoping never to have to go through chemo or surgery ever again.  But alas, that is not to be my fate.

One of the things that bother me is the fact this tumor is inoperable.  So chemo is my only choice.  It is on the heart and part of the left lung.  Well, I can't live without a heart or lung, so yeah, I'd say inoperable.

In the past I had chemo then surgery to get the tumors.  Or just surgery when the tumor was found soon enough.  No chemo when you have great margins.  Oh, and radiation in combo with the other two.  This time, there is only one.  Chemo.  What happens if the Navutro doesn't work?  There are other possible therapies.  But no guarantees on any of them.

One of the things I dislike is the, unknowing.  OK, is this making a difference?  Really, how do you tell except when the whole treatment is done and there are scans and xrays.   I had to have an echo cardiogram done Monday.  The chemo drug they are using with the Navutro causes damage to the heart, (remember in 2003 the Cleveland Clinic used another drug that damages the heart.  They used the maximum allowed for a life time) I was watching and you could see a difference in the texture on the bottom of the heart versus an area a the top.  They also used Doppler to show the blood going through the valves.  Color determined what was going in and what was going out.  I haven't heard anything, so I am going to assume no news is good news.

Admittedly, I do like the chemo schedule.  Once a week.  Two weeks treatment, one week off, two weeks treatment, one week off, you get the picture.  That one week no chemo gives your body a chance to try to recover.  Not long enough for mine.

I am tired.  So if I sound a bit negative, don't get in a panic.  If I get a bit over emotional, don't panic, I am tired.  Another 45 minutes and I am out of here.  I may stop for lunch somewhere.  I am craving sushi.

And before you all start, "You shouldn't eat sushi while going through chemo".  I know that.  So does every other patient that goes through this.  But you know what?  I'm eating it anyway.  I am past the point of giving a fuck about what I eat. 

In reality, I am going to die.  Maybe not this time, maybe not the next time but it will happen.  So, why should I not eat things I enjoy?  What is it going to do to me that cancer hasn't? 

If I were rich money wise, I'd be driving and flying all over the United States visiting friends, coming back for chemo, and setting off again.  I'd go to Tuscany and tour the vineyards, and eat lots of good food, go to Utah, New Mexico and where ever the winds blows.  But I'm not rich, so I can't.  but if they ever tell me I am terminal.  I am going to Tuscany, and a few other places.

I think I'll nap for the last bit of chemo.  I am tired.

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.