Well, Now, You Listen Here Doctor Man!!

Note:  Readers, I was supposed to have my right lung w/tumor removed on May 13, 2011.  The doc did a brochoscoopy first and said the cancer had spread up into my trachea and he would have had to reconstruct the trachea and then re-implant the left main stem bronchus onto the trachea.  It is probable that I wouldn't have survived the operation...so he closed me up.  This blog is about my follow-up appointment with him.

Today I had an appt. with my surgical oncologist, we were supposed to discuss my treatment options.  This is what he told me:

"Go live what is left of your life."  

What?!!

My lymph nodes in my chest are full of cancer, so the cancer is in my lymphatic system.  We don't know if or where it has spread, we don't know for sure if I have metastic disease or not.  He said there is a good chance that my liver is involved.  He doesn't feel the need to do the test which would tell me what genetic markers are there, he says a PET Scan would be nice...but sometimes Carcinoid Tumors won't even light up on those.  Basically, I feel that he's given up on me.  He stated that the chemo could make me sicker than what I already am.  But, if the chemo could shrink the tumor and give me more years then that is what I want.  I'm not ready to give up just yet.  I get the feeling that my lack of insurance is a factor in what he's telling me....don't know.  I am really disappointed that he is giving up so easily on me.

Well, Mr. Doctor man....I'm not ready to sign up for hospice just yet.  He said he couldn't give me a time frame, and he can't because he's NOT God.  The tumor in my chest is (using his words) very angry and agressive and invasive.  Well, it's been in there for a least 8 years....so really what did he expect?!

So....I fight on.  I will find a doctor that will help me fight, I don't care what I have to do to make that happen!!!!!  My life is worth fighting for.  My gloves are on, I'm in the ring....waiting for the bell and for a doctor to help me win this fight.

Just another chapter in the story of my life.  

The Gloves Are On Baby!!

Well I feel as if I have been trudging my way through a jungle.  A jungle of red tape.  My machete, is my computer.  I have had to request the help of a paitent advocate.  I've always known that fighting cancer would is tough, and I only thought that was on the physical side of it.  Wow.  Was I ever wrong!! 

Not only is it physical, as the cancer is in my body, doing what it does.  But, just trying to get in to see a specialist is proving to be a lot tougher than what it should be.  Doors just don't seem to be opening as easily as I would like for them to.

I understand that doctors want to be paid.  Well, of course they do!!  I don't blame them and I would love to be able to throw money at them.  But...I cannot.  So, I've went down several avenues.  I've applied for this program and that program, been turned down for one, one is still pending....I think I may have to sacrifice my first born for it to go through.  Ok...so I am being a bit dramatic.

I contacted The Huntsman Cancer Institute, to see about seeing a specialist there.  I was informed that I would have to have a PET Scan and a Brain MRI before the doctor would even see me.  The PET Scan alone can cost up to $8,000.  That took my breath away, so I haven't inquired about the Brain MRI cost, as I am breathless enough.  So, as I don't have $8,000 at my disposal, I had to contact a patient advocate today.  They took all of my information and somebody (an advocate maybe?) will contact me within 3 business days.  Ok.  I don't know what they will do, but at this point I hope they are wearing a spandex jumpsuit with a cape and will fly to my rescue.  Am I being too dramatic?  Probably.  Oh well...I am what I am.

On the 26th, I go back to my thoracic surgical oncologist to discuss treatment options.  I've had all of these weird words thrown at me, and they all sound really radioactive and I start thinking that maybe sometime in my near future I will glow in the dark.

I've learned more about Carcinoid Cancer and tumors than I had ever wanted to learn.  I am now officially a "Lungoid".  I've been called worse.  

It shouldn't be this hard!  I tried to get on with that new "pre-existing" coverage and found out that because I had had the lowest of the lowest medicaid coverage within the last 6 months, that I don't qualify.  PCN wouldn't pay for anything.  That's what I had most recently in the past.  It is Utah's lowest form of Medicaid for the uninsured and uninsurable.  So now I don't have PCN anymore...well as of the 31st of May.  So what do I do?  These are some of the things I have thought about doing:

1)  Going to a busy street corner with a cardboard sign that says, "will work for cancer treatments".  Then I would have to explain how out of breath I become because lovely tumor of mine likes to cut my oxygen flow down to low.

2)  Write Oprah Winfrey.  Oh Crap...she's quitting tomorrow.  Too late...missed out.

3)  Offer to sell my tumor to the highest bidder on Ebay....IF that person will help me get treatment to shrink the stupid thing.

See....I'm running out of ideas here.  Oh well.  I'll just keep making phone calls, filling out forms, sending my CT Scans all over the universe....keep cutting through this red tape.  On way or another I'm gonna get this thing out of there!!  OH...and one doctor won't even bill insurance, he demands $1,000.00 up front before he'll even shake your hand.  Well...la dee da!!  Won't be seeing that wacko!! 

If you have health insurance....BE YE THANKFUL!!  And...I will try not to covet your coverage.

*sigh*

Wait A Minute.....That IS a Zebra!!!

This was a blog I wrote on Facebook, they day of my cancer diagnosis. Many things have happened since...still happening.

I have named my Blog "The Zebra Chronicle" because, medicine is a science. When young MD's are trained, there is a mantra that they learn....and I will give you the short version: "When you hear hoof beats behind you, don't expect to see a Zebra, it's probably just a horse." Well, in my case that mantra was proven wrong, mine in fact was a Zebra. It is my great hope that my blog can help somebody. God Bless!

I just got home from my surgeon's office. I feel numb. I am terrified. The surgeon says that it has been there for years, but now the tumor has gotten aggressive. I have cancer. I have Stage IIIb cancer. The tumor (Carcinoid) has wrapped itself around my right airway in my right lung. It has been there for years.

Next Friday, and I just realize that it will be Friday the 13th, I am having surgery. He is going to open me up and remove my right lung. However, if he gets in there and feels that removing my lung will kill me quicker, then he will close me back up and I will have to undergo chemo and radiation. They will also find out then if the cancer has metastasized anywhere else in my body. If it has, then I will undergo chemo and radiation anyways. Our hope is that he can remove the lung and that will be all the cancer there is. It is scary for it's been in there for so long and cancer likes to travel.

Over the years I have had doctors tell me that I had an enlarged hilar lymph node in my right lung. We now know that it was the tumor they were seeing all along. This makes me angry, sort of at myself that I didn't have it investigated further. But, I can't dwell on that.

I have to dwell on living. I will more than likely have to learn how to live with one lung and I know that is doable. Your right lung makes up for 55% of your breathing capacity. My left lung will grow 10 to 15% larger after the surgery. I may be on oxygen for a while and it will take my brain a bit to realize that my right lung is gone.

So, this is what I need from my friends and family. I need your prayers. I need you to tell me jokes. I need to laugh. I need you to hold me up the best that you can. Because....I NEED to live, I want to be here for my kids and my Jadabug. I love being a Gammy....and I want to be a Gammy for a very long time.

My surgery will be at Intermountain Medical Center here in Salt Lake City. My sugeon has never lost a patient from surgery, he has only lost one patient due to advance lung disease after the surgery. That's good to know. I really like him. He gave me his card and told me to call him if I had anymore questions, and that he would call me back. He has already called me twice...so I really like that about him. Please say a prayer for him as well. I thank God for giving him the knowledge to do what he does.

I know that God can heal me completely. I leave this in his hands.

Love & God Bless

Sam