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 :)

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!