CANCER CAN SUCK IT!

I think it is safe to say that anyone who has ever been diagnosed with cancer is always worried about one thing.  No matter how hard you try not to think about it, somehow it always creeps back into those dark places in your mind.  You know those places, the ones where you stick all of those unpleasant things that you prefer not to think about so much but are still important enough to file away.  This one worry is made even more intense if you have been able to wrestle it into submission with either one of all the combinations of chemo, radiation, natural therapies, supplements, positive attitudes, green smoothies, coffee enemas, acupuncture, acutonics, acupressure, shamanic healing, praying, making sacrifices, or performing rituals.  What is that one lingering fear, the one that never, ever, EVER goes away no matter how clean your last scan was or no matter how good your blood counts look?  For this Cancer Assassin it is the fear of it coming back.

One of my biggest fears came true last Friday.

My mom and my aunt came down to Portland so that they could go with me to my appointment with the oncologist. We to hear the official results of the CT scan that I had done two days prior.  I think all of my friends and family expected the scan to be clean.  They have been clean for me since August 2011, just a short 17 months after my original diagnosis which baffled everyone.  Upon diagnosis my liver was literally COVERED in tumors.  Some were clusters of smaller tumors spattered throughout my entire liver, others were 3-5cm and another one was a whopping 9cm!  Everyone wondered how I was even standing in front of them.  My ALP (alkaline phosphatase) was off the charts, however my CA19-9 was never elevated.  Needless to say 17 months later my scans (PET) showed no living tumors, they were all dead!  This inactivity of cancerous growth lasted until my most recent scan done on Jan 16.  The prior scan done back in July was also clean.  In 6 months I had grown a tumor that looked a lot like a snowman, two tumors touching, both approx 3cm in diameter.  This is the one that they are going to perform Y-90 direct radiation treatment on (radioembolization) in the next couple of weeks.

This Y-90 treatment is the same treatment that I went in to see a doctor about on August of 2011.  The same doctor that I am seeing now actually.  The same doctor that performed the PET that said "complete remission" although no actual doctor ever said those words to me.  I guess that scan reports are not necessarily the gospel.

I call it the "black hole"

Anyway, my recent scan was not clean.  The cancer is growing back and in a brand new spot! At least it is still in my liver and hasn't migrated out to any other organs yet.  They say the next typical place for my type of CC to go is in the lungs....  I knew something was up.  I was just in too much pain and discomfort recently to feel like I was ok.  I kept trying to tell myself that the pain was just the "feeling of healing" but my mind kept wandering to those dark places where I kept my fear.

Now, let me just say that yes, it sucks.  I don't really know how I feel honestly.  I am not afraid really, not so much of the cancer anyway, actually I am more afraid of having to get more chemotherapy.  I know how bad it is for me.  It kills so many good, healthy cells and not enough of the 'confused' ones.  I think that it is almost worse in a way because I know exactly what to expect from chemo.  I will feel sick all the time.  I will walk around taking note of all of the places that I could vomit if I needed to.  I will have to pull my car to the side of the road from time to time to throw up.  There will be angry, itchy, hot rashes on my face making me look like I am going through puberty all over again.  There will be neuropathy in my arms, legs, hands and feet (feels like needles and pins when your not kind of numb feeling).  There will be bone pain that feels like growing pains multiplied by 1000.  I will lose my  memory, concentration, word recognition and ability to make even the smallest of decisions like soup or salad.  Small decisions such as these literally sent me into a panic attack last time, freaky huh?  More chemo induced menopause complete with hot flashes so severe that I just want to peel my skin off.  Sleepless nights jacked up on prednisone, the chemo buzz you get after your last treatment from all of the toxins off gassing, and my favorite, constipation from all of the pharmaceuticals you take to control all of the side effects from the chemo...

In a way I suppose that knowing what to expect is also good.  THIS time I am going to try to prevent some of these nasty side effects because now I know, right?  Right. :)

It is weird.  When I was first diagnosed I found my "comfortable" place with my "terminal illness" diagnosis.  As I have always said "I make my own statistics" and labels don't apply to me (or you!).  After I "killed" so much cancer and had a clean scan I was skeptical.  I was happy, but I was also skeptical.  I know that cancer is sneaky.  It doesn't care that your scan was clean.  It just wants to live and grow and grow some more.  Like I said, "confused" cells.  I don't hate my cancer.  To me those cells are as much a part of my body as my nose.  They somehow, somewhere along the line got misdirected and confused about what they are supposed to do and how to grow sustainably (hmm...sound familiar?).  I wish I could just reach into my liver and cup my hand around my tumor and massage it and give it love and guidance.  I actually do this in my mind every day.

Back to sneaky cells....Having cancer can make one very skeptical of placing too much hope in one thing (like a clean scan).  It is like it almost dulls all the senses in a way, at least for me it did.  I always take my good health news now with a grain of salt.  I am very appreciative of good news and still very happy about it.  BUT I feel like I can never ever let my guard down, I have to remain ever vigilant and in tune with my body.  I felt like I was doing so much before but now I feel like it obviously wasn't enough and I still need to do more...

Once again it all comes back to money.
I only really have two choices right now.  1. I do chemo and radiation and continue with my supplements and the multiple other things I do naturally to keep my body as healthy as I can or 2. I don't get chemo and just continue doing what I have been doing which obviously isn't working 100%

It costs sooo much money to even see a new naturopath and get on a new type of natural therapy such as mistletoe extract or enzyme therapy.  It is nearly $20K for the Gerson clinic in Mexico and then you also have to redesign your entire lifestyle after that and have someone to help you out 24-7 which is impossible really (unless you have a partner or spouse who you live with that is willing).  My only option really is chemo and radiation.  This new tumor is in a bad spot, pushing up on my stomach making things very uncomfortable.  IF it grows then we could be looking at even more trouble with blockages etc.  My oncologist actually told me that people with blockages usually don't fare well....I have been incredibly lucky so far to not have any blockages.  If they saw some small tumors scattered around I wouldn't be feeling so drawn to the toxic treatments.  But like last time I feel that this one is a bad mofo and needs to be taken down before it has a chance to do major damage.

Now if you have been on my blog long enough you know that I really didn't want to do any more chemo.  Not just because of the immediate side effects but because of the long term ones like kidney failure and secondary cancers.  Kidney failure is NOT on my agenda.  I will go out in a pain riddled blaze of glory somewhere beautiful before I will ever be chained to a piece of equipment for the rest of my life.  Im selfish like that I guess.  The trick is to not get enough chemo to damage the kidneys beyond repair but that is a fine line and yet another fear to place back there in that dark place in the mind.

A little message from the Universe to me

Although you might not really think so after reading this post, I am actually in good spirits.  Still smiling and as dorky as always.  I figured that I would most likely be getting "maintenance chemo" from time to time but I was hoping that I could put that behind me and not really have to do it.  But hey, if life always worked out like we planned then it wouldn't really be all that fulfilling or exciting.  One thing is always for certain, there is never a dull moment in the life of The Cancer Assassin :)

Cholangiocarcinoma 101 & Our Screwed Up Medical System

It has been a while since I have posted about the "basics" of cholangiocarcinoma (lets call it CC for short) and I thought that today would be a good day to review just exactly what CC is all about.

Cholangiocarcinoma (or bile duct cancer) is a cancerous (malignant) growth that originates in one of the ducts that carries bile from your liver to your small intestine.  CC is a relatively rare disease that only one out of every 100,000 people will ever get diagnosed with.  It can occur anywhere along the bile ducts and since the bile ducts are located within the liver it often spreads (matastasizes) into the liver and other organs in the body.  CC can be further categorized into three categories, extrahepatic (or perihilar or hilar), intrahepatic, and distal extrahepatic.  The most common form of CC is extrahepatic or Perihilar/hilar and originate in the hilum, or the place where the hepatic ducts have joined and are leaving the liver.  Another form of CC is distal bile duct cancer which actually forms outside the liver closer to the small intestine and is included in the "extrahepatic" category.  The least common form of CC is "intrahepatic" which develops in the smaller duct branches inside the liver.  Only 1 out of every 10 bile duct cancers are intrahepatic making it the most rare form of cholangiocarcinoma.  Imagine my surprise to find out that I have intrahepatic CC!  Not only do I have a rare disease, but I have the rarest of forms of this rare disease as well, lucky me.

The symptoms of CC can vary depending upon where the tumor is located within in the bile ducts.  If the tumor is hilar the patient usually has symptoms of jaundice, itching, abdominal pain, progressive weakness and weight loss.  If the tumor is distal there is often no abdominal pain but there is jaundice and itching (pruritus).  And finally if the tumor is intrahepatic there is often no jaundice present but there is itching (pruritus), slight to severe abdominal pain, unexplained weight loss, progressive weakness, fatigue and loss of appetite.

Before I was diagnosed with intrahepatic cholangiocarcinoma I had all of these symptoms except for the jaundice.  The back of my head itched like crazy! I remember thinking that "I don't have evidence of dandruff so why does my head itch like hell?"  I used apple cider vinegar every day to try to get the itching to stop but it wasn't working.  I had severe abdominal pain and extremely poor bathroom habits.  My right shoulder hurt all the time ( I found out later that this is where the liver often expresses its pain since there are no nerves to express pain in the liver) and I was losing weight (although at the time I thought this was a good thing).  I definitely lost my appetite, although at the time I didn't attribute that to anything other than I felt crappy whenever I ate (gassy, bloated, nauseous, etc.)  I often vomited in the mornings prior to my diagnosis and it was usually bright yellowish green and slimy (I'm guessing this was bile) and tasted horrible.  I had a HUGE hard mass right in the middle of my abdomen at the place where the ribs meet just below the sternum.  It felt like hard lumpy cottage cheese and protruded out from my abdomen.

The real problem with all of this is that I went to the emergency room at Swedish Hospital in Ballard (a neighborhood in Seattle) with these complaints and severe abdominal pain.  They ordered an ultrasound thinking I had gallstones.  After spending nearly an hour looking at my insides they determined that I was just fine and sent me home with orders to see my primary suggesting that I get yet another (i had already had three) endoscopy.  Knowing that another endoscopy was pointless, and that yet another doctors visit with the same set of problems was going to get me nothing except for more prilosec, I chose to ignore making an appointment with my primary.  Fast forward 3 months...I was in my primary's office for another reason and asked her to feel this giant lump in my abdomen, telling her that it hurt like hell and that it made it hard to breathe (like a knife in my stomach if I took a deep breath).  She felt it, or in medical terms, "palpitated" it and told me these exact words, "I see nothing remarkable, just take this prilosec for a month and let me know if it gets worse."  She was positive it was a hernia even though I explained that I had a lower back injury and that there was no way I could have gotten a hernia because I NEVER lift anything heavy.  This was at the 45th Street Clinic in Seattle.  My suggestion...DON'T GO THERE! or to Swedish either for that matter.

This is the problem with Cholangiocarcinoma, it is hard to diagnose.  Many of the symptoms fall into the "digestive disorder" category, especially if you are unfortunate enough to have the "intrahepatic" kind which doesn't usually present with jaundice (an indicator that something is wrong in the liver).  By the time one is diagnosed with CC it has already done extensive damage to the liver and has grown aggressively.

I'M NOT BUYING IT!

Why?  Because if I can look up these symptoms on the internet and find that "giant lump in abdomen", "itching or pruritus", "abdominal pain", "weakness and fatigue" "vomiting smelly slimy yellow stuff" and "weight loss and appetite loss" are all symptoms of cholangiocarcinoma SHOULDN'T A TRAINED MEDICAL PHYSICIAN KNOW THE DIFFERENCE  between a rare incurable cancer and a hernia!!!???

If this disease is rare and incurable then why aren't doctors trying harder to connect the dots with unexplained symptoms such as those above and CC?  Why?

Why is is that the medical professionals cannot even tell the difference between IBS (irritable bowel syndrome, which is what they said I had for more than 10 years) and Cholangiocarcinoma?!  Is it that they don't care?  Is it because insurance companies are willing to pay for endoscopies and colonoscopies but are not willing to fork over $800 for a CT scan with contrast?  Why do doctors just run the same old tests on you with the same results for years on end, wasting money and time and getting nowhere when they could just LISTEN to what you are telling them and think outside of the box for just one second to help their patients find the cause of their symptoms?

Cholangiocarcinoma is a relatively slow growing cancer in comparison to other cancers out there.  I am certain that all those years I complained about digestive disorders and abdominal pain I had CC growing inside of my liver.  Instead of ever ordering a simple liver panel or CT scan I got more pills, I got told that it "was all in my head", and that I must have a hernia.  I got endoscopies and colonoscopies and countless prescriptions to cover up my symptoms, but never a simple blood test to check my liver functions.

What do I take from all of this?  Let me give you some very important advice my friends.  This advice can quite possibly save your life.

BE AN ADVOCATE FOR YOUR OWN HEALTH


No one knows your body better than you do.  If you feel that something is not right, be persistent and question your doctor if they are not helping you find the reason you feel bad.  If they don't help you FIRE THEM and find another doctor who will help you.  The doctors do not always know what is best for you, some of them don't even care.  You pay good money (and a lot of it) for healthcare and you deserve better than a lame excuse for whatever you feel is wrong and the "brush off" of yet another prescription to mask your symptoms.

Those of us diagnosed with Cholangiocarcinoma know just how screwed up this all is.  Many of us have gone through similar experiences with doctors overlooking our symptoms and writing it off as other disorders.  The survival rate of those with CC isn't entirely uplifting...those diagnosed with extrahepatic CC have a 5 year survival rate twice that of those diagnosed with intrahepatic CC, but even then the rate of survival past 5 years is at best 30%.  Of course this is just all based on statistics.  I am of the opinion that I make my own statistics, just as you make your own statistics.  No one can tell us how long we have on this earth.  My point in bringing up survival rates is that CC is more often than not a certain death sentence.  It just seems to me that with the odds of survival being so slim and the increasing diagnosis of CC in young adults being on the rise, the medical community and society in general should be spending a little more time and attention on this killer of a disease for which there is no cure.  That is just my opinion.

Sites referenced:

http://www.cancer.org/acs/groups/cid/documents/webcontent/003084-pdf.pdf

http://www.hopkins-gi.org/GDL_Disease.aspx?CurrentUDV=31&GDL_Disease_ID=A6D10E80-887D-49A7-B3BB-0517D38CE757&GDL_DC_ID=320F4EDD-0021-4952-83D7-8B0C67B47BFF