Tuesday, August 30, 2011


I am going to write a more lengthy post about this a little later this week but for now I just have to share my news to those of you who may not have heard yet.

After my appointment with Dr Perkins the surgical oncologist on Monday I had another PET scan on Wednesday and an appointment with a radiological oncologist named Dr Jason Bauer who was planning to administer Yttrium-90 direct radiation beads the size of a grain of sand through a catheter, about the size of a human hair, inserted into my groin and threaded through veins and such into my liver.
He came into the exam room, introduced himself and immediately began complementing me on how great and healthy I looked in spite of having extensive and aggressive stage IV cholangiocarcinoma.  He commented that he was close in age to me as well as Dr Perkins (the surgical onc).  He was basically in awe.
Then it happened. He got all serious and told me that he really wished he could help me with his miracle treatment but he just can't.  The reason he can't is because the PET scan (this makes the only one I have had since my first diagnosis last March 24, 2010, yes that's right LAST YEAR) shows that I have


So what does this mean??? it means that I am officially 


One and a half years ago I was given about 6 months to 1 year to live.
One and a half years ago I was given a 20% chance to live 5 years.
One and a half years ago my life changed forever.
My priorities became very clear.
Life became very simple yet unimaginably complicated all in the blink of an eye.

Even though it was Friday when I got this news I am still in shock.  It is still sinking in.
I have my regularly scheduled chemo and appointment with my oncologist tomorrow so perhaps it will seem more official then.
I am still going to get chemo for a while to make sure all those  bastards are completely fried and that there isn't one little cell that is still clinging to life to turn into full blown tumors again.

The reason they haven't found this out yet is because they haven't done a PET scan, they figured they didn't need to...the cancer most likely hasn't spread due to the nature of CC and the CT scans showed that they were always shrinking AND no one and I mean NO ONE just cures themselves of severe cholangiocarcinoma EVER and especially in 1.5 YEARS!!!

Everyone is flabergasted, floored and shocked.  They all want to know "What did you do?".
I told them, you all know what I've been doing.  Eating right (no chemicals, no processed foods, organic always, limiting or eliminating all together dairy, and animal proteins, juicing) taking supplements and vitamins, getting nutritional IV's, getting exercise as much as possible when I feel good, HAVING A POSITIVE ATTITUDE, not meaning I am always happy, meaning I always try to find something good, some positive in every situation no matter how crappy it is and how hopeless it feels and how alone and abandoned and scared you are and no matter how it seems and feels like the ENTIRE UNIVERSE is conspiring to your disadvantage, and no matter how much I sometimes HURT both physically, emotionally, mentally, spiritually, etc I just never EVER gave up, EVER!

I also have an amazing support network, very loving friends and family, kick ass, state of the art, cutting edge doctors on my side.

I made these changes in less than a month.  I didn't have the time or luxury to do it gradually.

More later, I LOVE you all and wish you all the happiness and health in the world.

The Cancer Assassin

Tuesday, August 23, 2011

Conversations with a surgical oncologist

Monday I had an appointment with a surgical oncologist, Dr Serene Perkins at the Good Samaritan in downtown Portland.  Actually Monday was yesterday, it doesn't feel like yesterday.  It feels like about a week ago. It was a little bit of an emotional day to say the least.  Here is what they said.

The very first thing she said is "You are the youngest patient I have ever seen with cholangiocarcinoma."  My reaction, "I haven't heard that one yet." Both of us with a giant smile on our faces.  I liked her already.  Not only was she pretty and reminded me of my girlfriend Karin from Seattle, but she was smiling and that, for me, is just an instant winner.  If you have ever had to deal with a lot of doctors you most likely have already noticed this, or maybe it is just me, who knows, but it is a pretty rare occasion when your doctor is walking around with a giant contagious smile on her face.  Especially one who's next words were something like this, "I'm going to give it to you straight (again, a woman after my own heart here) I cannot operate on your liver to remove the tumors because every lobe is affected and you wouldn't have any liver left over.  BUT, there is someone I want you to talk to who is a radiation oncologist who has this new (just out of study and now available) awesome cutting edge therapy that I think you should start immediately."  Wow!  At first I must admit that I was disappointed.   I wanted her to tell me that she could operate now and that they can remove all of the tumors and my liver will grow back in 6 weeks and everything would be awesome, that basically I would have a brand new liver!  After all, I was at the surgeon's office, where they perform surgeries talking to a surgeon.  Why would I think otherwise?  Actually, I knew otherwise because Shao had mentioned to me that she wanted to talk radiation, but DANG IT I wanted it to be different.  I knew what to expect, the meeting went pretty much exactly as I thought it would but yet I wanted it to be different.  I wanted the fairy tale story book ending, where crazy miracles happen and young ladies with liver cancer magically get healed.  I know that this is actually great news! That there are awesome doctors out there who are specialists in my type of disease who spend their spare time talking about me and my case wondering how they can help me the best.  I'm an anomaly.  People who get cholangiocarcinoma are usually much older, most often they are men, and often have other liver troubles or other diseases that have led to cholangiocarcinoma (CC, it's a long word folks:).  They are not usually 38 year old, active females who has never had anything more serious than a broken arm when I was about 7 and a little bout with salmonella when I lived at Crystal Mountain back in the early to mid 90's (let's just say that little dorm fridges don't work very well at keeping chicken frozen apparently). The doctors are all very pleased with my progress.  It would seem that I have been doing an unexpectedly exceptional job at assassinating those cancer cells.  Dr Perkins said that I have had an amazing response to the chemotherapy and that people don't usually respond as well as I have but that the effectiveness of the chemo is reaching its end and I am already on the lowest dose possible meaning that I cannot (nor do I likely want to) have a higher dose unless I want to risk other complications such as kidney failure, bone marrow damage, permanent neurosis which I have found to be quite unpleasant and painful, and a slew of other highly undesirable physical and mental troubles.  She is also very optimistic about the new treatment and suggested to me that I should begin it as soon as possible...and perhaps we will be able to talk in the future about surgery. That is what we are hoping.

The therapy....so far what I know (which isn't that much yet as I have not been scheduled to see this new doc yet) is this and it sounds scary but very effective so sign me up.  As I see it (I'm always trying to find the positive in even the crappiest of situations) this is an option that wasn't even available to me a year ago, I am making progress! Now it is proven!
The treatment is called Yttrium-90 and it sounds like a good thing to me.  The doctor that I will be meeting with is the only one in the city that does this treatment and he also just happens to be very highly recommended and respected by the surgical oncologist being a pioneer of this promising treatment.  Yes, I said promising...
I am not going to lie or pretend to be all tough or uber-optimistic right now, I am a little bit freaked out.  Catheter?! Where?!!?! Radiation actually inside my body! Crazy! Insane! Even though as crazy and insane and scary as having a catheter inserted through your pelvis into your liver so that you can feed radioactive spheres into your liver to kill cancer cells sounds the thing that scares me the most is that this actually sounds promising to me.  I am becoming hopeful that this will be the thing that delivers the last punch to those rogue cells causing havok on my body and my liver! The scary part is if I get let down...we all know how it feels to be happy and hopeful about an anticipated outcome of a situation, most of us also know how it feels to be let down in such occasions and how devastating this can sometimes be.  I mean, look at how much I got freaked out yesterday at expecting to have surgery (you know the happy ending where they cut it all out and my liver is happy and cancer free) instead of radiation and catheter that is uncertain, invasive and scary.
Actually I worry about being too excited or overly hoping for a certain desired outcome (of course never trusting or being fully present for the process what so ever) pinning everything on it and having it be ineffective, thus rendering me a blubbering, irrational, emotional slob for a few days/hours reminding Jeff how lucky he is to be with me...

Or better yet, I can focus on all of the positive! All of the awesome specialists and doctors and nurses I have looking out for me, talking about my case, trying to figure out what they can do to help.  Instead of feeling like the situation is crappy and lame because I am the "lucky" individual who happens to get a rare form of cancer at a young age....I can see it as at least I am "lucky" enough to be young with a rare disease that catches peoples attention and, much like House, provide them with a strange and interesting puzzle that they are dying to figure out.  I am "lucky" enough to have some awesome doctors on my side, my team, which happens to be comprised of specialists, natural and traditional medicine, awesome nurses and aside from all of the titles and formalities just down right good, no, AWESOME people I have working on my side, fighting for me!  This is how I would rather see it.  My choice is the positive.  I decided long ago that I was not going to waste my time and energy on worrying about all the things I may not get to/can't do.  I would rather spend that energy on doing it and making sure it will happen.

Cancer Can Suck It!

Friday, August 19, 2011

Some News!

My apologies for the lengthy delay in posting, however I have been having so much fun lately! My trip with my mom and my aunt to Cabo catapulted me into summer vacation mode.  I have spent more time lately away from internet and phone service than I have spent within service areas and more time in the Westy than in my own bed at home and that is definitely a good thing!

I have mostly been home for appointments, both chemotherapy and my nutritional IV's.  Some sweet angel (I'm not naming names but THANK YOU SUSAN!) generously put $200 on my account at the Center for Traditional Medicine and that pays for more IV's and some vitamins that I cannot get on Amazon such as Maxiflav.

9000' on Mt Hood Cooper Spur
So I went to my regularly scheduled chemotherapy appointment on Tuesday.  I had a scan just the day before (Monday) and Dr Shao rushed the results so that we would be able to read them during my appointment.  Someone went home without finishing their work that night and we only got to see the images without any official report on size etc.  The images told the story though.  The tumors are still visibly shrinking (not so much anymore though) so that is great news! I had my routine chemo and came home feeling pretty toxic from Monday's CT contrast and from the toxic chemo cocktail on Tueaday.  I am pretty sure I slept most all day yesterday finally getting up to fix some food at about 4 or 5pm.  I was wiped out! Wednesday afternoon in between slumbers I get a call from Dr Shao.  I am expecting it is him telling me the official results of the scan since we didn't get to see it the day prior.  But it wasn't, it was much better!
He has been speaking to a surgical oncologist named Dr. Serene Perkins (check her out, I've provided a link) who has become very familiar with my records and condition.  She happens to be a specialist in bile duct and liver cancer as well as a transplant specialist.......hmmmm......sounds good to me!
Cooper Spur
Awesome poppy field somewhere in northern Utah
Dr Shao explained to me that he thinks I have received most all of the benefit I can from the chemotherapy and thinks that this is the next logical step.  I have an appointment on Monday to speak with her about what she has in mind.  I will keep you all posted!  The thought of surgery scares me, really scares me.  But the thought of having the cancer gone, my liver healed, my health recovered, and a new shot at the most healthy life anyone has ever lived not taking even one second for granted!

YOU all have been my support, my scaffolding upon which I draw my strength. You all help me out when I am penniless and in need of medication so that I can feel somewhat like a "normal" person.  You give me that strength to get up the challenging rock climb and it is your voices and prayers that I hear whenever I am not certain about the future or when I am feeling like death is lurking nearby.  Thank you so much!

In Mazama :)
This is one of my favorite "feet" pictures ever! I love watching the change in the landscape on long road trips.  The geology of our country is pretty awe inspiring and I am so glad I had a chance to see it again! I will be going back for sure!

Awesome secret "locals" swimming hole in Moab.
I crammed myself into the Twirlybird and only since looking at the pictures have figured out that it most likely really worked! I shoulda put some money in it!

The delicate arch in Moab.  Beautiful!

Me and my fire...I love to build a campfire! We cooked sweet potatoes and fresh corn roasted in the husks for dinner this night. Who says road food has to be bad food? You just have to be creative!

Stoic Clark at the beach.

The BEST (and maybe only) thrift store in Moab!
Joe Wilson Arch

On the rail to Cooper Spur

The awesome Mr Stewart and me
Here are some of the pictures from my latest adventures.  Since Cabo I have been on a road trip with my mom to see my good friends the Stewarts in Newport WA, on to Montana, into Idaho, Utah, Nevada, then back home through Oregon.

Jeff and I also spent a week up in Mazama near Winthrop and Twisp, WA.  It was beautiful and we had the campground to ourselves for 3 or 4 out of 5 or 6 days we were there! It was climbing heaven! It was also so peaceful and beautiful! The little swing I found out in the middle of the woods near a trailhead.  I expected to see fairies!

Strong and Healthy!
Next was a trip to Leavenworth, WA for some more climbing.  Once again climbing heaven! One of the only people in the campground most of the time we were there (all of the other campgrounds were almost full, but no one caught on to our little secret!).

There are days that I feel like doing nothing at all, days I don't have the energy to even make food for myself or get up long enough to do just about anything.  Then there are those days that I feel great! On those days I get out and take it all in, the smells, sights and sounds.  I want to hold it close and never, ever forget it.