The Low Down

It is turning into whirlwind city again.  BUT not enough to cause the magnitude of panic that hit me back in March of 2010 though and that is a good, good thing :)

I am a seasoned veteran now.  After nearly 2 years of chemo I am pretty sure I can handle what is coming my way in about a week or so.  I hope...

I should find out today exactly what day we are going to do this procedure.  I had my angiogram mapping procedure done on Tuesday.  They ran a catheter into my femoral artery in my groin and mapped out all of my veins, the tumors, how the tumors were supplied with blood, how many cc's my liver could hold, and just the general anatomy of my liver etc.  Looks like once again I am a bit unique. Apparently most peoples livers are supplied by one of three main arteries (I have totally forgotten the names something like duodenal, mesenteric, something gastric sounding) and I happen to be one of those people who are not like the others.  1 out of every 1000 people have a liver that gets supplied from a different artery (not bad or good, just different) and I am that 1.  I am guessing that if I ever became a candidate for a liver transplant it might be a bit hard to find a donor due to this....just a guess.

During the procedure they placed 5 coils (I was told they look like tiny caterpillars or pipe cleaners) that  block off certain veins supplying blood to the right and left lobes of my liver.  These coils will never come out.  They are made of platinum.  Who knows, I might just set off the detector in the airport now. These were placed in these positions in order to block off one side of my liver while they inject radiation into the other side.  They are planning to hit the left lobe first, then approximately a month later they are going back to hit the right side.  Apparently there are lots and lots of veins that supply the gut and liver and I was told that it is extremely hard to kill the blood supply to the gut.  So I am told that these platinum coils that never come out will never be a problem.  Its like bling in my insides! Kinda cool and a little freaky at the same time.

I have been a little sore from the mapping procedure.  They went in right in the crease of my thigh (imagine bikini line crease) and the spot where they went in is tender plus the leg and up into my gut just a little bit are achy.  I was told by my nurse friends that this is normal.  Needless to say I am not very comfortable being up on my feet for a length of time and I really don't like to walk too far or be in my car for longer than possible.  It makes things achier.  Don't get me wrong, it isn't painful really, just achy in a strange way that just feels different from anything I have ever felt before...but then again, except for a biopsy and port placement I have never had a surgery so this is all new to me.  On the plus side the incision is only about 1/4 inch long and it is barely visible :) Waay better than the port scar.  It is a little unnerving though having someone tell you not to cough too hard or lift anything heavy (over 5 lbs) because you might bleed out...can you say paranoia?!

I promised an updated list of supplements....I finally got them all together and organized.  I am waiting on the PSK (he has one that is supposed to be far superior in absorption on order) and butyrate to come in and those will also be added to this mix.  This is what I've got so far.  I will also include the names of the companies that make them if you are interested.  My ND and I went through all of my supplements and as much as I would like to find cheaper ones out there, he insists that these are the superior products and I should stick to these.  He did say that the Eclectic Institute Milk Thistle can be a substitute for the milk thistle listed here.  So far this is the only substitute that has been acceptable.  I think this may be different for preventative treatment vs therapeutic treatment.  Right now I need the GOOD stuff.

Here is what they look like :) Curamed is missing

Supplement list:

Resveratrol Extra by pure Encapsulations   1tab/3xday
COQ10 by Integrative Therapeutics  1chew/3xday
Ecomer Shark Liver Oil  500mg by Scandinavian Formulas   2tab/3xday
Ultra Potent C, by Metagenics  1 tab daily
Vit D3 & K2 liposomal spray by Protocol  2 sprays/day
Milk Thistle Extract 250mg by Vital Nutrients  1tab/3xday
EGCG Green Tea Extract 275mg by Vital Nutrients  2tab/3xday
Oncotonin by Cardiovascular Research  2 tab evenings
Artemisinin by Allergy Research Group  2 tab/3xday
Liver Support by Vital Nutrients  1 tab/3xday
Detox Formula by Vital Nutrients  1 tab/3xday
Benfotiamine 150mg by Doctor's Best  1tab/3xday
Pure Lean Nutrients by pure Encapsulations  1tab/3xday
Curamed by Terry Naturally, 2tab/3xday
Urea 28 grams daily in pomegranate juice
LDN 1.25mg 1 tab in evening
2 Quarts of green tea daily
PSK (on order)
butyrate (on order)

I will also be starting DCA after I am safely out of my last radiation treatment.

breakfast

I am also on a strict Ketogenic diet now.  NO sugar of any kind (no fruit, honey, etc) and NO carbs (grains, potatoes, etc.) I try to stay under 30g of carbs every day.  I have to say that after all of the other dietary changes I have done in the past three years this one has been the easiest for some reason.  I have really been enjoying my diet lately.  Truthfully the only time I have missed sugar at all is in my morning Earl Grey (I've been using stevia lately).  So far it's been a piece of cake...sugarless, carb-less cake :)

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 :)

CANCER CAN SUCK IT!

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

 NO MORE BIOLOGICALLY ACTIVE OR LIVING CANCER IN MY BODY!!!

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

IN REMISSION!!!

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.

Laura

The Cancer Assassin

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!