Saturday, July 28, 2012

PET scan results and other fun stuff

She's radioactive!
On the 12th I had my 4th PET scan.  My oncologist decided to do another PET instead of CT so we could see what has been going on for the past 2 months.  I must say it is a little weird to go from having to see the oncologist weekly, then bi-weekly, then monthly, to bi-monthly...I just can't help but worry about it being that long in between visits, wondering if in that time something might start growing out of control or something.  But instead I choose to focus on the positive, perhaps that is partly what has gotten me this far, who knows?

As usual I always request a copy of the scan on disc that same day (and I sit in the clinic and wait for it) and as soon as I get home I plug it into my computer and scrutinize every little detail hoping not to see those tell tale dark spots in the image as I examine it from every possible angle.  It looked pretty much just like the last scan (THANK GOD!) and I was content to wait until the following week to get my "official" results from my oncologist.

Now if you have ever heard of me describe my oncologist, you will know that he is pretty stoic.  He never really gets excited and never really gets worried, or if he does he never shows it.  However, this time was different.

I sat on the exam table as usual and looked at the scan results with him on the computer.  He said "Things are still looking very good" and then turned to me with a smile on his face (first one I have ever seen) and said "How many people do you know that are in your situation?"  I said "no one" to which he replied, "Exactly! You are an exceptional case!"  You just have no idea how long I have waited to get that excitement from him! It just made my day!

I still have yet to hear those words "you are in remission" and I suspect that is because I still have masses of tumors, although dead, in my liver.  They keep shrinking slowly but surely and I am so thankful for that!

I really picked my oncologists brain that day, making sure to ask him all the questions that I had forgotten to ask before.  I got smart and wrote them on a list this time so chemo brain could't forget.  I told him that I feel like I keep waiting to feel normal again.  Like I can go to work for 8 hours a day, or be able to concentrate on something without losing that concentration or getting so frustrated that I give up.  I'm waiting for the day that I can feel consistent.  One day I am full of energy, and the next I could be on the couch sleeping the entire day.  I may go out to run errands or for a walk and end up so tired and exhausted that I can barely drag myself back to my door.  He admitted to me that unfortunately there is no money to be made in cancer survivorship programs, no drugs that they can sell you, nothing to market so to speak.  He made it very clear that he felt this was an area that definitely needed improvement and where there was a huge lack of resources.  He said the best thing for me to do was to have a great support group (family and friends etc) to help me out.  I have that.  It's YOU! But all the emotional and/or financial support in the world is not going to help me shake those nasty chemo side effects.  It will just take time, good nutrition, exercise, rest and a positive attitude.  Who knows, those side effects may never go away.

Just a girl and her jackhammer
Sometimes I feel that others think that since my scans are clear and I am not getting chemo right now that everything is all back to normal and life goes on like before.  Well, let me say that this is far from reality.  I am still waiting to get my brain back.  It's getting there, slowly but some progress is better than none at all :)

In the meantime, my mom and I went to southern Oregon to dig for fire opals at the Juniper Ridge Opal mine.  It was spectacular!!! We had so much fun and found so many awesome specimens! What a treat! On the way back we found this awesome little hot springs by the hwy (58) and soaked in its 120 degree water for an hour or so.  It was heaven!

I also got interviewed by our local Fox news station yesterday at The Center for Traditional Medicine about why I get my nutritional and high dose vitamin C IV's.  It was exciting! I don't know when it will air yet but I will keep you all posted.  I don't have tv (can't afford it) so I will have to see if I can get a recording of it or go to a neighbors or friends house to watch it.

some of my loot!
I want to give a HUGE shout out to all of those of you out there who have contacted me about you or your loved ones who have cholangiocarcinoma.  I am so honored to be able to share my story and experience and resources with you.  I want to help you out as much as I can by sharing those resources, so please do not hesitate to get in touch with me.  Sometimes I may be a little slow to respond but I promise I will get back to you.
first time ever river kayaking

Thursday, July 26, 2012

Looking for individuals with terminal illness to document their stories

Greetings and health to you all!

I wanted to share this with you all as it seems like a very important opportunity for those diagnosed with a terminal illness to share their experiences, feelings, thoughts, fears, hopes and uncertainties with the world.  Those of us diagnosed with a terminal illness know just how incredibly hard life becomes in an instant.

I was contacted by an international TV production company that is making a documentary film comprised of short 2-3 minute home videos of those who have been diagnosed with a terminal illness.  It sounds very promising to me.  I love the idea of sharing the impact that such a diagnosis has on us with the rest of the world.  I plan to participate.  You can either use your home video camera, computer camera, or a video shot on you phone and submit it.  In other words it doesn't have to be fancy or shot by a pro.  It seems like a great step in the right direction to draw attention to how the diagnosis of a terminal illness affects us, as well as a great educational tool for those who have no idea of what it must be like to be told that you have a short time left on this earth.

Here is the email I got, copied and pasted right into my blog.  Now you have the same information I do.  Please consider sharing this with others who might be interested as well.

International TV production company looking for individuals who have a terminal illness to feature in the presentation tape for a TV documentary.
Unique documentary aims to show the thoughts, feelings, experiences, wishes and aspirations of those who have been diagnosed with a terminal condition - told in their own words...

We asking anyone interested to upload 2 - 3 mins of self-shot casting footage via and send to ( using mobile phone / PhotoBooth or small HD camera footage), telling us their unique story.  
Please email sophie at for further details.

Many thanks,


Wednesday, July 11, 2012

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.


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.


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:

Saturday, July 7, 2012

Sunshine, rocks, trees, waterfalls, and PET scans

Tub full of carnelian agate
It has been a busy summer so far, but busy in a fun way.  My dad came to visit and we went rock hunting and to the Bagby Hot springs, I got to see his new place in Castlerock.  It's right on the Cowlitz river.  Looks like I am going to get to catch some salmon soon.  He also agreed to let me keep bees there too and I am excited about that!  A few days later my mom came for a visit.  It was a ton of fun.  We headed over to Madras, OR for the All Rockhounds Pow Wow, it was fun to stroll through all of the neat-o stuff.  On the way home my mom treated us to a little bit of gambling at a casino in Warm Springs, OR.  We always go cheap, we split $20 ($10 each) and played the penny slot machines for a few hours.  It was actually a nice distraction from the norm.  We came out with 10.33 still in our pocket.  Not too bad for a couple hours of entertainment.  Mom and I also went rock hounding (looking for carnelian agate) and found so much that we could barely carry it out to the car.  I just love finding agates! It is like getting little special gifts from nature.  It is a rush every time you find one, especially if it is large or has some druzy inside.  We also hiked to Ramona Falls and as usual, it was spectacular.  My mom had a great time enjoying the scenery and checking out the vegetation.
It seems that my summers are like this...busy but in a good way.  I love it! I love seeing my friends and  family and showing them where some of my favorite spots are.

Ramona Falls hike
I was talking to my mom about my diet lately, how I've been avoiding wheat, gluten, sugar etc. and how hard it is in any social situation (even if it is only with one other person) to adhere to this diet.  It seems that you can't walk into any restaurant and avoid the "brown food group" you know the one, colorless, lifeless, processed, and re-processed until it really no longer even resembles natural food anymore.  Now my mom knows how important my diet is to me and that it is largely responsible for the assassination of the cancer in my liver, but she also watches me struggle with eating as well.  To those of us with cancer or other life altering diseases we are acutely aware of how we are not the same person anymore in many aspects.  Food, being the building block of life, is critical to good health.  Food is also synonymous with social gatherings as is alcohol.  It is strange to go to an event (lets say a family bbq or friends birthday party) and watch everyone eating and drinking and you (the one with cancer) are getting side glances from people (or maybe I just think I am) wondering why you don't have a plate of food, some of their potato salad/pasta salad, hamburger, processed veggie/soy burger, hot dog, or strawberry shortcake...and why the hell isn't their a beer in your hand??  No one understands this better than my mom.  She has had to put up with hearing me go on and on about how difficult social gatherings revolving around food and drink are for me.  It sucked that we couldn't go get a giant plate full of yummy pasta, with some crusty bread and a glass of wine.  It also sucked that we couldn't go to Pine Street and have one of the best biscuits on earth for breakfast one day.  Now, don't misunderstand...I am not trying to say that eating pasta or a biscuit is going to kill me or anything that extreme, but if I do stray from my diet and have that indulgence I am paying the price not even 30 minutes later...bloating, gas, stomach hurts, feeling like I swallowed a beach ball, etc.  The next morning is no better, the bloating is still there, looks like I am carrying a child, can't get relief because the back door is locked if you know what I mean...
Ramona Falls
So it boils down to this.  I HATE going out.  I feel that if I cook and prepare my own meals at home, not only is it healthier for me as I can cook what I know is good for me and know exactly what goes into it, but it also alleviates the anxiety of trying to figure out what to order on the menu...lets face it, one can only eat so many salads.  I hate the bar, but everyone that wants to go out usually gathers there.  I order my "mocktail" or tea and sometimes get a refill but I am always ready to leave before everyone else because I am bored and quite frankly tired of watching others drink and drink.  Funny thing beer is, you order and drink one and you just want another and another.  Everyone around you doing the same thing.  I lightly mention that I am getting ready to leave and immediately find myself making excuses to go, "I am getting really tired", "its late and I didn't sleep well last night", "I don't feel very good" etc.  A lot of times I imagine that everyone is thinking that I am a prude or party pooper, I'm always the first one to leave.  On my way home from such events I get a little depressed, thinking about how nothing is the same anymore, how I feel like an outsider or an oddball, like I just don't fit into this world anymore. I love my friends, I love seeing my friends and visiting with them.  And I don't want them to treat me with kid gloves because I have cancer or because my diet is different from theirs.  But then I have to face the reality that cancer does make you a different person in every possible way.  I like to think that having cancer made me more aware of my health, my diet, my body, and more appreciative to be alive. Even though all of these good things came from a cancer diagnosis, it is still hard to overlook the social awkwardness of certain situations.
Rhody shadow on stump

So this coming Thursday the 12th I am going in again for my 4th PET scan.  I haven't seen my oncologist for 2 months.  The appointment with him to determine the results of the PET scan is on the 17th...I will keep you all posted.  I am hoping that it is going to be looking even better than the last time.  I will be honest, I have been worrying about it lately.  I've been so tired, sometimes sleeping all day long, going to bed and sleeping all night and waking up just as tired as I was before all the sleep.  My liver aches still, some days more than others, but every time I feel it I can't help but worry "is it coming back?" "what will the scan say?" "will they tell me that I have to get chemo again?"  UGH!

I have been really frugal lately, another reason that I hate going out.  One meal at a restaurant can buy 3-4 days worth of veggies for me.  I rarely drive anywhere anymore.  It saves money (gas) and I need to get my brakes replaced which is something I cannot afford to do right now.  My car has been parked in the lot of my apartment building for almost 2 weeks now.  Another reason I don't go out.  I am waiting for my dad to get settled into his new place and then I will be taking my car up there and working on fixing brakes together in his garage.  I know it can't be that hard and my family (including me) are all handy like that :)
miniature forest 

In the meantime, the sun is shining here in Portland, its in the mid 80's, the birds are singing, the grass is green and the roses are blooming.  Funny, I feel like less of an "oddball" or "outsider" when I am in the woods, no pressure to go to the bar, the trees and I can just sit quietly and enjoy each others company.