The Terminal Journey begins

I said it before, in my gut/heart I knew that cancer was going to be my end.  It is just weird when the doctor actually confirms your gut feeling.

Each time I was diagnosed I had that feeling, you know that one, the oh shit gut feeling.  It is either my sixth sense or I have gotten really good at reading the body language and tone of voice of my doctors.  

Well, I finally got to talk with my daughter, and since my son and sisters already were told, I was going to send messages through Facebook to my friends, which can get a bit over whelming.  I could have sent a mass message, but that bugs the crap out of me, because even if you tell people don't respond to it they do and everyone get the response and it just ends up getting people upset.

So I posted on FB.  I think people are making a mountain out of a mole hill. I mean, I have been beating the odds since 2003. In reality it was bound to get me. 

My son told me in reality, other people's reality, I did drop a mountain on them.  He is right.  

The logic behind my thought is I have had a very long while to accept and adjust to my mortality.  In 2003 I was resuscitated, and in reality I was brought back from the dead.  That kind of gives you the realization your life can and will end, eventually.

I feel uncomfortable with people.  Always have.  I am an introvert with extrovert tendencies.  Well there are a few I am comfortable with.  Part of it is I have foot in mouth issues.  I open my mouth and sometimes what comes out is not appropriate (language), or shocking, or morbid, you get the idea.

Add to that I have body issues.  Not really the body per say, but when I look in the mirror, I see how cancer has aged me.  The wrinkles have really compounded over the years.  In 2011 I had some but now, they are deeper.  More prominent.  I know it is vain, but I don't feel that old.

Cancer ages you.  No matter what anyone says.  It ages your body, your face, your viewpoint.  Your attitude.  Maybe that is why I am the way I am.  I used to have patience with games people play.  I don't anymore.  Just tell me the truth and be done with it.  Don't sugar coat it, just say it.

That being said, having terminal cancer and looking for a job blows fucking chunks.  I hate it.  I shouldn't say anything about the cancer because they can find reasons not to hire you that have nothing to do with "cancer".  You are over qualified, under qualified, they promoted from within because the person has experience.  And NEVER tell them you are terminal.

No I haven't done that.  Legally, I don't have to.  My health is none of their business.  I need to live, and it takes money to keep a roof over your head, and pay for food, not to mention that life saving health insurance.

I need to keep health insurance.  Right now I have it through COBRA.  Thanks to my former employer, I can keep it for another 12 months.  I have been looking for a job for a year now.  Sucks.  I know, apply for disability.  I did, but even if they rush it, I have at least 6 months to wait for a decision.  OH, COBRA was cheaper than the health care act.

There are so many emotions running through me right now it is crazy.  At this moment in time I feel crazy.  I am angry, touched, depressed, happy, no not angry PISSED off, there are times I want to just jump down someone's throat, but that wouldn't be right.  Other times I can look at things and just smile and shake my head.  

Right now I just want to scream at some people.  What the fuck is wrong with you?  Stop whining about that damn purse you can't afford.  Stop whining about things not going your way.  Well shit head, welcome to life.  Some days it fucking sucks.  There are so many people out there that don't have a roof over their head, or food on the table - you are whining because things didn't go your way, oh boo hoo.  Put on your big kid pants and suck it up buttercup.  Start looking at the good things in your life and be grateful! Do you have people who care?  Someone that loves you?  Roof over your head?  Food?  Job? Ability to get from point A to point B?  Then be grateful, and change things you are not happy about.  I am going to die, and I can't stop it, I can fight it as long as possible, but I can't stop it.  I am going to die before my time, so fuck that whiney, pussy ass shit and get off you ass and start living.  Stop missing life because you are so concerned about shit you don't have.

Yeah, I am angry.  Very angry.  I want a job, a good paying job with health insurance.  I don't want to become a burden to my children, even though my daughter kept telling me don't go to hospice when the times comes, she'll take care of me.  I don't want to die on my children.  Fuck, I don't want to die, I want to work, stay independent and laugh, and complain once in awhile.  I want to travel, alone and with my children.  I want to be able to travel with my dogs.  There is so much in life I want to do, and I will do as much as I can.  I want my children to look back and have some great memories of their mom.  They may be adults, but they are still my children.

I am angry, very angry.  I am also sad.  I am in no hurry to leave this plane.   There is so much to do, see and experience.  I don't want to leave my children.  I don't want them to experience the pain and loss.  Even though I know it is a part of life, and they have lost their grand parents and know loss.  I don't want to be that pain.  I don't want to hurt my children.

Shit, I honestly don't want to hurt anyone!!

I want to cry.  I never do.  I feel a tear or two in the eyes, and the sense of wanting to cry but then it passes.  Perhaps it is because I understand the reality of it all.  

There is house work to do, and laundry.  The dogs to walk and the car needs a bath.  I don't feel like doing any of it.  Now the depression is starting to roll in.  If you haven't realized it, the emotions have rolled through.

I think I am going to stop for now.  I will try to be a better blogger.  I am going to try to document the Terminal Journey through the blog and artwork.  Mixed media, pictures. 

Go hug someone, and do something you enjoy.  Remember - We are all stories in the end, just make it a good one. ~ The Doctor

The story

My sister asked to write my story.  It isn’t an easy straight forward story – there are the major happenings, then the little stories that layer in between that makes the larger event bearable.  I will try; but in trying stories of love and support, will be there between the lines. They too are important.  I am so grateful to those people who have helped and continue to help me.  I apologize for not detailing your stories.  I am limited to 7500 characters.

You have cancer. That is something no one wants to hear one time.  I have been told that six times.  Sarcoma, rare.  Lucky me. The head of the Pathology Department at the Mayo Clinic – asked to keep my biopsy slides to use in his teaching.  Is it weird that made me happy?  (My cells are helping to teach!) 

I hate January.  Seriously, I do.  It seems that every time I was “officially” told I had cancer in January.  Since January 2003 I have been beating the odds.  At the Cleveland Clinic I was told that the cancer could kill me, and if I survived, there was a 1 in 500 chance of it returning.  I laughed and said, “Well, that means my chances of it returning are better than winning the lottery!”.  Let me explain, I have a warped sense of humor, always have.  If it has to do with me it is open game to me.  If you can’t laugh at yourself, who can you laugh at?  I actually have laughed plenty during this entire venture with cancer. 

Since January 2003 I have lost my left hamstring, right latissimus muscle, lower two thirds of the right lung, half my liver, a third of the pancreas, duodenum, gall bladder, part of the right pectoral muscle, a scoop of the right quad, several feet of lower intestine, a couple feet of small intestine, part of my stomach, and had several skin grafts (By the way when they fail you smell like a corpse.)

January 2003 my journey began at the Cleveland Clinic.  Biopsies, the doctor “officially” telling me I had cancer. 

I went through the MAID chemo and radiation.  Very difficult chemo.  Chemo brain is very real.

In 2008, I was offered a job in Virginia, as a contractor working on a Marine Base.  I passed the magic five-year mark, and time for change.  I turned over the shelter I founded to a wonderful group of people, and moved.  (For the record, I really loved my job.  The work was meh, but the people were awesome!  Loved working with Marines. They have warped sense of humors too.

Divorce in 2010, cancer returned in 2011.  Right lung, lower and upper intestine and the right pectoral muscle. I now have a basis for the worst pain you have ever felt in your life.  It is either having your abdomen sliced open from under your rib cage to the pelvic bone, or having your sternum cracked open.  Either way, it rates a 10.

2013 -  Whipple surgery was done. A Whipple is a surgery that entailed removing the following:  part of  my stomach, duodenum, part of the pancreas, part of the liver, the gall bladder, and several feet of intestine. Basically, they rearranged my digestive system. I always have Zofran because eating nauseates me.

2014 -  Right thigh. Attached to the quad. This one was actually one I laugh about.  No chemo this time – the basis for this decision is the fact it nearly killed me last time.  A day surgery, they went in scooped the tumor out of the leg, discharged by noon then I went to lunch with my son at a local Indian restaurant. Surgery was a Tuesday, they told me I had to take one day off work. I took Wednesday off, and I was bored.  I was back at work on Thursday.

March 2016.  The left lung, my GOOD lung. It was small. No chemo if Doc got good margins. Doc got good margins. I had surgery on a Monday. I took Monday, Tuesday off and you back to work full time Wednesday.

I actually thought that the worst of 2016 was done.  It was a bad year.  During the spring the company I worked for told us that they were not going to bid the contract they had with the Marine base I worked on.   I started looking for a job.  The contract ended at the end of July.  Job hunting started in earnest.  I picked up a couple of small part time jobs.  I need a job with good health insurance.  Right now, I am unemployed; but I am keeping the COBRA insurance paid for!  COBRA was cheaper than Obama Care, and better coverage!

November 2016, I started feeling like an elephant was sitting on my chest. December, I was in the ER, hospitalized, they thought they saw fluid in the lung they tried to drain it. It didn’t work. Surgery was scheduled for December 18. They  discovered pockets of fluid on the lung and surrounding the heart hiding tumors. They removed the fluid and debulked the tumors.

January 2017, a Saturday at 8:00 AM. I got a call from the doctor with the results. The cancer was back, and it was in fatty tissue surrounding the heart, actually it is on the upper aorta, and lymph nodes. My oncologist got the insurance company to approve the new anti-body treatment that was rushed through.  I am the first one in the area to get the treatment.  It was rushed through FDA in October of 2016.  February, I started LARTRUVO and doxorubisin.  Weird hair loss, fatigue, nausea, shortness of breath, side effects. 

I finished the original six cycles.  I had a PET scan done, the cancer on the upper aorta and lung seem to be stable.  However, a new tumor developed in the colon, while going through chemo.

Surgery isn’t an option unless it becomes a blockage.  It is too dangerous.  I’ll keep doing the Lartruvo for the next three months, along with CT scans to see how the colon tumor reacts.  If there is no reaction or growth, we will try the Yolandis.  Yolandis is derived from the sea sponge.  I have a feeling that Doc is going to have to convince the insurance company to pay for it.

June 29th was the infamous talk.  Optimistically my life span is expected to be 12 to 18 months.  My doctors (oncologist and surgeon) are encouraging my to do my bucket list.  (Yeah, that cost money and I have to pay for my insurance, and I am still unemployed – not for lack of trying.  Yes, I am still looking for a job.)

I always knew that cancer would be my end.  Just not ready for it.  Going to keep fighting.  But as the doctor and I talked, we both came to the conclusion I will fight, but I do not want to do the really harsh chemotherapies.  The quality of life is an issue for me.  Back and forth to the hospital.  Feeling half dead, not wanting to enjoy the simply joy of sitting on the deck.  I’ll fight, but quality of life really is important.

I want to see friends, make memories with my two children.  Get some bucket list things done – things drive across the USA and camp at the National Parks with my girls (dogs) in a 4 door Jeep Willey (my 2004 Malibu with 160,000 miles wouldn’t handle it.) Visit friends while driving the country. I could keep all my camping equipment in it and just randomly tell my dogs to jump in and lets go to the next National Park. See Stonehenge and touch it.  See places my roots are from.

I want to make a difference to people as I do a bucket list – lots of random acts of kindness anonymously.  (I do those now, but would love to do more) Make sure all the bills are paid, make sure final expenses are covered.  No life insurance.  Nothing to sell.

I don’t know how I’ll do it, but somehow, I’ll find a way, I hope.

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.

Fatigue - Or a Little "Whine" with that?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dance Six continues.....

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

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

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

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

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

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

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

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

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

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

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

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

It has been awhile - Dance five complete, Dance six to start

Well, the last time I posted, it was to explain my arm tattoo.  Since then, spring 2015 they found a tumor in the left lung.  You know my good lung. 

It was decided that they would do surgery (separate the ribs, remove the tumor), if good margins were obtained, no chemo.  They chose to take this route since the last time I had chemo it nearly kill me.  Well they got good margins!  Surgery on Monday, back to work on Wednesday. 

Well since then the contract I had a job under at the Marine Base ended, so I became unemployed.  But I have Cobra, for now.  October, a small spot showed on the CT Scan.  They thought it was a small pocket of fluid, and opted to watch.

November I started having issues breathing.  Like a weight on my chest.  Some days it was worse than others.  Thanksgiving was spent in New Orleans with my kids, and it seemed OK, so I figured that maybe I had just had a chest cold or something.  Once I got home, one day it would be OK, the next it wouldn't.

It kept getting worse, and finally after a rough weekend, I figured on Monday I'd call my Family Doctor, and be told I had walking Pneumonia.  Well, Monday I felt OK, not perfect but a little better.  Tuesday, I felt crappy, so I called.  Talking to the appointment clerk, she transferred me to the nurse, I told her I was having a hard time breathing, a weight on my chest.  Well, she said go to the Fredericksburg Office to their urgent care, me, I figured, I'd just drive to the hospital near me.  Only a few miles away, and I would be able to drive home.  Yeah. 

The ER doctor came in and the "fluid" area was larger.  They wanted to keep me and have radiology put a drain in the lung.  OK. After that he came in and tells me that they are going to transfer me to Mary Washington Hospital because they are better equipped to handle my issue, and possible complication.  (Translation, my doctors wanted me closer, and the hospital is considered a trauma center).

I met one of the Oncology doctors mine works with, he tells me that they will be following, and talking to the Tumor Board about me the next day.  He started talking about Antibody treatment and newer just approved by the FDA treatments.  I just dismissed it.  All my doctors track me. If one knows something, they are in communication.

Well they put the drain in and no fluid really came out.  After a couple days of it, I talked to my Thoracic Surgeon, they want to drain it surgically, me - I am ready to agree to anything as long as I can breath without an elephant on my chest.

Fast forward to after surgery.  Talked to the doctor, he said there really wasn't fluid in the lung but pockets on the lung and attached to the heart.  Me not really thinking anything worse, cool, I can breath.  He got everything he could, and sent it out to several labs for biopsy.  Everything they take out of me goes for biopsy.

January 7th.  The surgeon is back in town, at 8:00 AM, I get a call from him.  Do you have time to talk?  Sure! I say in my normal upbeat voice.  Then he drops the bomb.  The cancer is back.  All the doctors know.

January 13th.  I had a follow up appointment with the surgeon who did the Whipple, and removed the tumor from my leg.  We chatted (yes he already knew)  He asks me what plans do I have?  Well I want to go to New Orleans for Mardi Gras, but that schedule hinges on treatment, and I'd really like to go to Tuscany, see the Rockies, the Grand Canyon.  I want to take a helicopter ride over it and a donkey ride into the canyon if they still do that.  He told me do it.  Don't let the treatment interfere with doing it.  OH OH.  When a doctor says that, it is time to be a bit concerned.

Well, I went to the Oncologist office after that, yeah, it is back, it is attached to the heart. 
Me:  OK, so now what?
Doc:  It is inoperable.
Me:  Oh.  So translate.
Doc:  Stage IV, inoperable.
Me:  OK, so what is next?
DOC:  Antibody treatment, just approved by the FDA, but it is approved with only Adriamycin.  Which you had the entire amount allowed.  Anymore would damage your heart.  But there are alternatives to it; the insurance company will have to approve it.

He wanted to start this week, but everything needs approved by the insurance company.  I have a CT scan scheduled Friday to see what it looks like.  They need to try to "Router Rooter" my port, and if they can't, replace it.  But it all depends on the insurance approval.

Now since I am unemployed, I have Cobra.  But my Cobra runs out in March, so in order to get insurance and covered during the Open Enrollment (pre-existing conditions) So, I have an ACA policy that kicks in in February.  So one insurance company will approve anything in January, and it will all have to be redone in February. 

So I will be shelling out for out of pocket and deductibles on two policies.  But at least I won't have to meet the $5500 on Cobra, and the $7000 on the new insurance.  Very confusing.

But I am a bit frustrated.  I work two part time jobs.  Between the two I bring in about $930 a month.  More than unemployment, and living off my savings while looking for a job. 

ACA said I make too little for a tax credit. 

Yes, I am still looking for a job.

The Story of a Tattoo

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Make sense?

Phoenix by Robert , Black Dragon Tattoo, Uraban, Md