Please spread the word and share this far and wide!

Thank you so much!

My friend has set up a donation account to help me cover medical expenses in this new phase of my treatment which is high dose Vitamin C IV's.  Any assistance at all is very much appreciated in deepest gratitude.

I am off to go get my PET scan.

Many Healthy Blessings to you ALL!!

Here is the link to the YOU CARING ONLINE FUNDRAISER

An update, a decision, and a plea

What a year its been!

It's been weird, emotional, exciting, crazy, adventurous, painful-really painful, scary, uncertain, ambiguous, frightening, love filled, family and friend filled, uncomfortable and downright draining at times.  I have bonded with my couch and my kitty and my digital converter (hey, almost free TV).  I have seen the inside of my eyelids more times than I care to count but only in the daytime and never in the middle of the night.  I have been radiated and medicated and sedated out of my mind.  I feel like I have aged 10 years in the last 6 months.  I struggle to keep my weight above 110,  struggle with my appetite on a daily basis, and struggle with the energy to prepare meals even one time each day.

During the hardest times my thoughts have wandered into the darkest corners of my mind and I found myself thinking that I have nearly had enough.  Extended periods of pain and weakness from malnutrition made me wonder how I could even still be alive.  I often wondered how I could be in so much pain and not have passed out or passed away yet.  I came dangerously close to calling it quits and it scared my shitless!

On a much lighter note I have been feeling pretty fabulous (for me that means my pain is about a 5 out of 10) for the past three days.  I think it is because I have had more of an appetite and I have been eating more (more energy) for the last few days.  I have also been able to take my vitamins and supplements again three times a day which is a giant accomplishment for me!  I still struggle but at least I have more energy to prepare food which gives me even more energy for other things, like healing and kicking some cancer booty.

I think that a lot of people don't really understand just how hard these past months have been but I think that is partly my fault.  I try not to post too much about how shitty things are because quite frankly I choose not to focus on it myself.  When anyone asks me "how are you doing/feeling?" the first thing out of my mouth will be "I'm doing great!" if I feel pretty good, or "I'm doing good." if I feel crappy.  What I wont say is "I feel like shit and my this or that hurts and I'm hungry but I don't want to eat, and I feel like I'm going to puke on you, I haven't gone #2 in days and I feel like a bomb went off in my liver and someone stuffed rocks in it."
There is too much to be grateful for to spend my time and energy focusing on everything that is bad or wrong.  The way I see it is that I am alive and that is a good thing!  What you focus on expands and I am determined to focus on all that is good.  Just like I am focusing on this new stuff they found outside of my liver as being just some swelling cause hey, I've pretty much been nuked and it is definitely not unreasonable.  Yep, just swelling!

This is a good time to transition into the real reason I am writing this post.

After a much needed visit with my friend this weekend my perspective has been changed on my next step with regards to treatment.

After I found out that my high dose vitamin C IV's would cost $175 each my heart sank.  I thought that there was no way that this could ever happen (I still worry) because I am supposed to get three each week making that $525/week or $2100 each month.  SCARY!!!
I kept looking at this as a whole ball of wax type situation, all or nothing and got scared.  I really don't feel positively about the chemotherapy they want me to get again.  I have a very bad feeling about it actually as do many of my friends and family.  BUT my friend explained to me that I should approach this one step at a time and try to raise as much money as possible and get as many vitamin C IV's as I can with what I got.  In other words I was too focused on my outcome and not giving the process enough time to unfold or to trust in it.  So this is what I am doing... I am going to trust in the process and quit thinking about the future so much.  After all I have been taking it one day at a time anyway and why does this have to be any different?

Obviously this is something that I cannot do alone and once again I am asking for any help at all large or small it does not matter and is ALWAYS ACCEPTED WITH DEEP GRATITUDE.  If anyone would like to help out in covering the cost of my treatment please feel free to contact my doctors office directly.  They are more than happy to accept payment over the phone and the donation will be credited directly to my account there, just exactly where it needs to be.  Plus you will also be able to get a receipt :)

Here is their contact information:
The Center for Traditional Medicine
503-636-2734

Big BIG LOVE!!!

My time is not even close to being over on this earth.  I am just getting saddled up for round two.  I am more experienced at this game now and cancer doesn't even stand a chance this time.  Apparently it still hasn't figured out who it is trying to mess with yet :)

Never a dull moment in the life of The Cancer Assassin!

My mom came down to Portland on Friday for what we both thought would be a pretty uneventful visit with my oncologist to discuss the results of the CT scan I had done last Wednesday.  I knew that the left lobe of my liver looked pretty badly beaten up with battle scars from the last chemo onslaught and I also knew that there were new tumors in there too.  I expected that it would be pretty much the same as the scan I had done not even a month ago and that this was all just procedural so that we could begin the next radiation treatment within the coming weeks.  What I did not expect was bad news, but bad news is what we got.

6 miles in on Eagle Creek

Apparently my cancer has now metastasized into what they think to be some nearby lymph glands.  The trouble right now is my oncologist was really sketchy on saying exactly what this new mass was, although he kept insisting it was most likely a lymph gland.  This new mass is pushing on my IVC (inferior vena cava), my portal vein, my diaphragm, my spleen, my stomach and everything else in that vicinity making for some really uncomfortable times on occasion and on other occasions making for a trip to the medicine cabinet for morphine.

The CT report describes this new mass as a "low-attenuation lesion" which means that it is not solid enough so that light cannot pass through it...in other words the higher the attenuation the more solid the mass is, so I am going to milk that statement as good news.  At least it is not solid enough so that no light passes through...  The report also suggested that the new swollen mass could be a result of the compression of the tumors on my arteries and such...

Basically what it boils down to at this point is this:

I got bad and ambiguous news on a Friday afternoon leaving me to sit with my concerns, thoughts, worries, fears, and questions all weekend long.  No one really knows anything yet and my next step is to contact my radiologist and go over the scan and reports with him.  Radiologists are more accustomed to reading and looking at scan images so it was suggested to me that instead of going over my scan with my oncologist I should be going over it with a radiologist and that is exactly what I am going to do before I make any decisions.  I also have a call in to my Natural Doctor and will be speaking with him as well about my options.  Oncologist is recommending more chemo again.  I am not sold on that idea.  I know from experience that although chemo kills cancer cells it also kills lots and lots of healthy cells too not to mention the horrid side effects that come along with it.  I am talking quality of life here.  I think that this round I may just stick to natural medicine.

Tumors are not the problem here.  The tumors are the symptom of my cancer.  We can use chemotherapy OR we could use natural methods all day long killing tumors but until the real underlying problem that is causing the tumors to grow is fixed and the whole body is healed the tumors will just keep coming back.  It is time to get down to the nitty gritty again and be insanely vigilant and healthy.  It may just be time for something drastic.  I KNOW that it is time for a vacation.

This new mass appeared in the short time of one month! This is scary to me!  How much time do I have to peruse the choices of this new decision I must make?

A friend asked me this weekend "What am I going to do?"  My reply was "I really don't have any choices."  The only thing my insurance will cover is more chemotherapy.  It wont cover any natural therapies like high dose vitamin C therapy which is natural chemotherapy and doesn't have any negative side effects and kills cancer every bit as well as chemo does.  My only choices are a) get chemotherapy or b) do nothing.  I simply cannot afford to pay for natural therapies, they are not cheap. But I don't want to get more chemo and live the rest of my days being so sick from treatment I cannot enjoy my life.

I just wished that I would fall asleep last night and wake up to realize it was only a dream or that maybe it would just vanish as mysteriously and quickly as it appeared.  I wonder that if I stuck my head so far in the sand all this cancer crap would just disappear, you know "out of sight, out of mind".  I don't want to sit and worry about it all so I have been trying not to think about it.  What is the use in getting all worked up over something that I really don't even have all of the information about just yet.  It wont do any good and will just stress me out.

It's crunch time.

What it's like

WOW!

I did not expect to be "gone" for so long.  It has been over two months since my last post and believe me it is not because I haven't wanted to post.  I just simply haven't even been able to.

I have had the craziest experience the past two months as a result of the first (yes, I still have to get another treatment) of my Y-90 direct radiation treatment.  I have to be completely honest and say that so far out of everything this has been the hardest thing I have had to do since diagnosis.  Trust me, chemo was no picnic at all and it sucked just as much, but it was different.  Chemo snuck up on me and slowly created problem/symptom after problem/symptom over time, many of which I still deal with to this day.  It slowly ate away at me and my body, but radiation (at least the type I had) just bitch slapped me hard, caused intensive pain (I'm talking a definite 10 here folks) not even an hour after the procedure ended and continued for nearly two entire months!  As a result I have been so out of it that I actually could not function for about a month and a half.

No one can understand what it is like to have cancer, especially terminal cancer,  or to have to go through treatments (or not),  or to have to make the decision as to what to do in order to live the longest amount of time possible,  or just how much pain one can possibly endure...there are so many circumstances in life that others cannot understand unless they too have gone through it too.

THIS is why I think it is so important to share information and experiences.  To the best of my ability, I am going to try to chronicle the experience I have had since Valentines Day, the day I became radioactive.  Mostly I want to explain to everyone exactly what happened as a result of the Y-90 procedure I had done on February 14.  The reason I feel this is so important is because the reaction I had to the procedure was not a typical reaction.  I was informed (and research also showed) that most patients usually experience flu like symptoms about 3-5 days after the procedure that usually last around a week or so.  Not so bad I though....but then again from past experience from other treatments I knew that my rule of thumb is to take what they (the doctors) tell you and expect it to actually be about 3-4 times worse than what they say it will be like.  That has been my experience so far at least.  So I figured that I would most likely be feeling pretty icky and flu like for about 3 weeks.  Well, lets just say that is NOT what happened by a long shot.  I also have to let you know that sometimes this description could get a little too graphic for some so if you are too sensitive to TMI then you might want to skim some parts.

On Valentines Day my aunt and mom came down from WA to take me in to get Y-90.  We got there at 6:30 and after getting set up with an IV and some blood tests I was in the now familiar operation room with all kinds of crazy gadgets and instruments.  They transferred me from the gurney to the operation table and started getting me all settled in with blankets and oxygen while other people placed a bunch of sticky sensor things to which they would connect wires to monitor or view something.  I always joke around with them asking my usual "so who is in charge of mixing my cocktails today?" You always gotta get in good with your anesthesiologist :)  Many of them remembered me from my angiogram a couple of weeks prior and I am thankful that they are all very friendly and willing to listen to me nervously ramble and tell bad jokes.  They always warn you before they put you out saying something like "count back from 100" or "imagine your favorite place to be".  The next thing I know I am awake, still on the table with 3 or 4 people milling around while a guy is placing pressure (I mean really leaning into it too) on my groin which is the place they accessed my femoral artery.  The procedure is to run a catheter into my femoral artery and up into my liver to deliver radioactive beads directly into the large tumors.

Waking up

I get wheeled back into my room where I slowly shake off the sedation and access my situation.  They delivered blueberries, carrots, water and cottage cheese which I was elated to eat.  It tasted like heaven after nearly 12 hours without any food or water.  My mom and aunt had been killing time while I was in my operation and had now returned bearing gifts, smiles, kisses and hugs.  We leave and for the rest of the day I actually don't feel too terrible.  I think this lasted for about 12 more hours because the next thing I remember is about a two weeks later when I had to go to the hospital and get a CT scan because I was in so much pain and they were trying to figure out why.  I don't remember going to the hospital to get the scan, I don't remember even getting the scan.  Apparently my mom and gramma were there with me but I don't remember that either.  I do remember having lunch that day though but that is about it.

I was in so much pain from my procedure that I was taking 4mg of dilaudid every 3 hours!  This went on for about a month.  Dilaudid is the strongest pain medication they can prescribe in a pill.  The only way they could have given me something stronger is to put me in the hospital and give me an IV.  The dilaudid made me severely nauseous so I took lorazepam and zofran to keep from throwing up as much.  The lorazepam in combination with the dilaudid made me a zombie.  I literally don't remember much of February and about the first two weeks of March.  I know I was somewhat functioning because I have pictures of me visiting with friends and family who came to visit BUT I don't remember much of it at all.  It is like being drunk one night and the next day your friend tells you something that you did the night before and you are horrified that not only you did something embarrassing but that you also completely lost that time and you will never remember it or get it back again.  It is a horrible feeling.

At first the radiation made me feel like I had a really bad sunburn inside my body.  The lining of my stomach, my esophagus, my mouth, and my tongue actually peeled off and shed out through my mouth.  It was disgusting and it caused an enormous amount of nausea.  All of the skin on my tongue actually peeled off.  If I put my finger in my mouth and rubbed my cheeks and gums there would be nothing but a gob of skin on my finger.  My stomach and liver felt like they were on fire.  It felt like two nuclear reactors melting down in my liver.  The pain was so bad that I could not take enough pills to even make it somewhat bearable.  I am no wimp either when it comes to pain.  My liver on a good day is at about a 3 or 4 out of a 1-10 pain scale so for me 3-5 is normal.  One weekend sometime around the middle of March I started to feel a little better so I thought I would stop taking the dilaudid and try to manage my pain with oxycodone instead.  Big mistake!  I spent the twelve hours from 6pm until 6am in the most excruciating pain I had ever had in my entire life.  I did not know what to do. I had taken oxy so I could not take dilaudid as they could cause me to stop breathing (they don't mix).  I was basically screwed until enough time had gone by so that I could take another dilaudid.  I didn't want to call my mom in the middle of the night and get her all worried and I knew that if I went to the emergency room they would not be able to do anything better for me and on top of that I would also be in a cold uncomfortable hospital room.  I put an emergency call into my surgical radiologist who did the procedure.  He called back and was absolutely stumped.  He had no idea why I would still be in so much pain and said that short of admitting me to the hospital and sedating me to the point of barely breathing there was nothing that he could do for me.  He also tried to cheer me up a little by saying that the pain is most likely a good thing as it is killing cancer.  Well that was all fine and great but I felt like it was killing me too.
Luckily by about 6 hours later the pain had become manageable (to about a 6 on the pain scale) and I was scheduled to get an endoscopy the next day to make sure that they weren't overlooking something as simple as an ulcer.  The results came back from the endoscopy and everything was totally normal and no one still had any idea as to why I was in so much pain.

My grandmama and me

All of the pain meds I was taking ended up having some very undesirable side effects.  Anyone who has ever had to take pain killers for an extended period of time knows that they will constipate you like no ones business.  Now imagine taking heavy doses of pain killers for about 45 days.  I literally did not go #2 for 28 days!!!  The pain from the radiation was made infinitely worse by the pressure and discomfort caused from not having a bowel movement in almost a month.  I was literally on the sofa or in the recliner for about 50 days.  I had zero appetite but forced myself to eat if I could.  I lived on yogurt and boxes of organic butternut squash soup for weeks on end.  It hurt to do anything at all, to stand, to sit, to talk, to read and even to type.  Loud noises and multiple things going on at once sent me into a panic attack.  I couldn't drive anywhere. I had to rely on friends and family to take complete care of me.  I was literally helpless often not even having the energy to go to the bathroom or bathe.

It was only by accident that my pain meds got changed.  My insurance did not cover dilaudid and I had been paying for it for weeks.  I received a call from a nurse at my clinic telling me that my insurance would cover another pain med that was time release morphine and if I wanted to switch I could.  At first I was afraid that it wouldn't work as well.  I though that if insurance covered it, it must not be as good.  I decided to try it anyway.  I only needed to take one pill every 12 hours and I also got to take oxycodone for "breakthrough pain".  I gave it a try and boy am I ever glad I did.  It actually worked much better!  After about two weeks of taking this I got to the point about a week ago where I stopped taking them completely! Yay!!  I now am able to get by with taking an occasional oxycodone to manage my pain.  Which means I also get to be more independent and take myself to my appointments or to get groceries without having to rely on others to drive me.  It has been a slow process.  I have thrown up so much that my stomach and entire abdomen is extremely sensitive to touch or motion.  I have been trying to get out and go for a walk every day to get moving again.  I have even gotten on my rebounder one day for a little workout.  I get tired quickly though.  I only have a span of about 3-5 hours before I really need to lay down.

The surgical oncologist is ready to get me back in to do the other side (the left side) of my liver soon.  I am expecting to be back for round two in a week or so.  I think that I might be prepared a little better this time though so that maybe it wont put me down as hard or as long as it did the last time.  The left lobe of my liver is only about a third of the size as the right side due to it containing so much dead cancer from last time with little healthy liver left.  Since it is so small I am hoping it wont hurt as much :)

I have been very absent in the world of social media and very absent in replying to emails from followers.  Please know that I haven't been meaning to ignore any of you at all and that you are all on my mind.  I will try to reply as soon as I can.  It is just that I have not had the energy, mind power or body power to do so.  Many of you have asked me what my advice to those of you out there who have been diagnosed with CC would be.  Let me just say that I am in no way qualified to be able to recommend a doctor to you by any means but with that in mind let me also say that it is extremely important to find a doctor that you feel you can communicate with and who is actually working hard for you.  Don't settle for less, this is your life you are talking about here!  I also recommend that everyone battling cancer should seek out the professional opinion of a NATURAL DOCTOR in addition to a conventional oncologist etc.  And the number one most important piece of advice that I can give to everyone is this.  YOU ARE WHAT YOU EAT! It is that simple.  You simply must eat healthy food in order to provide your body with the tools it needs to heal itself and keep you healthy if you are going through treatments.  This one is not compromisable.  Lots and lots of a variety of vegetables including dark leafy greens.

So to make a long story even longer, this is it.  This is roughly what my world has been like for the last two months.  I really just wanted to share so that people out there like friends and family, those of you who might be thinking about getting Y-90 or those who are just plain old curious.  Information sharing is one of the most important things cancer patients can do for each other.  Knowledge is power!

In the meantime, stay healthy, don't stress to much about the future and try to be thankful for this moment because it really is all you ever have.

Oxxo!!

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 :)

CT Scrutiny Now & Then

I suppose I am impatient.  I like to think that I am so much more patient now than I used to be prior to sitting for 6 hours at a time in chemo.  Cancer kind of turns you into a "patient" person in so many ways (pun intended).

Anyway, back to impatience.  I suppose I must be a glutton for punishment because I always get a copy of my scan and go straight home and plug it into my computer (or Pew Pew as I affectionately call it) and analyze and scrutinize every little spot from every angle I can, zooming in and out the entire time while adjusting the contrast around.  Here is what I saw today.

These first two pictures are the "worst" looking two angles from my first CT scan back in March of 2010.

CT 3/2010

CT 3/2010

These are from today.

CT 1/2013

CT 1/2013

The dark spots are cancer.  I adjusted the contrast so that it would be more apparent.  As you can see in the first pictures the cancer was not in neat little bundles but spread out all over my liver weaving together making larger tumors in places and otherwise scattered around in little clusters here and there making it impossible to surgically resect.

Now I know better than to put the cart before the horse AND I am certainly not trained in the art of reading images but to me the pictures from today look a LOT better.  It certainly makes one want to get excited doesn't it?  Cancer has made me immune to excitement it seems.  I hardly ever get excited anymore about stuff like this.  I suppose that I may be afraid of getting my hopes up for good news but then finding out that something is wrong (because once again, I am not a doctor and I am just guessing at this point).  I bet that most of us cancer "survivors/thrivers" out there feel this way.  

I was just complaining to my girlfriend last night about how much my liver was hurting.  It has been killing me lately.  For not having any nerve endings in the liver it sure can hurt a lot, weird huh?  Then she said to me "hey, pain is just the feeling of healing".  I nearly fell over! I LOVE it!! She is the one who first told me that "Cancer Can Suck It" because she was pissed that I had cancer.  It has been hard not to think the worst lately because of the pain.  Seems like if you are in pain something is wrong to me.  But hey, who knows it may just be The Feeling of Healing.

Does your health depend upon your wealth?

It most certainly does.  Unless you have some phenomenal health insurance that covers supplements, nutritional IV therapy, enzyme therapy, acupuncture, massage, and other related natural, non-toxic, non-pharmaceutical options then your health is dependent upon your finances.

A few months ago I met someone in Portland (he actually lives less than 3 miles from me) who was recently diagnosed with cholangiocarcinoma.  His oncologist was my second opinion oncologist.  He also sees a naturopath (a different one than mine) to keep himself healthy during chemo (he too is getting the same chemo I got) and to kill cancer the natural way with proven natural therapies.  He and I have been comparing notes on our cancer adventures, everything from our differing natural treatments and supplements to our chemo similarities and side effects from it.  It has been nice to have someone to talk to who really truly gets it.  I know that my friends and family definitely understand that this has been a hard process but unless you are actually going through it yourself or have gone through it you just can't understand what it is like.

My friend and I ( I wont use his name here in respect for his privacy) have been comparing our expenses lately.  We each take handfuls of supplements three or more times every day.  We need these because our bodies have been damaged not only from our cancer but from the toxic chemo cocktails that kill good cells, cause kidney damage among a whole host of other organ damage, and can ultimately lead to a high chance of secondary cancers later in life.  Supplements are not cheap people.  My friend calculated his and they cost him $45 every day! That is $1350 every month or a whopping $16,200 every year!  Keep in mind that of course you have to go see the doctor to talk to them about your situation before you even are prescribed the supplements you need.  Those visits are NOT paid for by most insurance companies (certainly not MY insurance) and usually cost anywhere from $100-$300 each visit.  Now throw in at least one nutritional IV per week (need those too, trust me if you don't get one for a few weeks you start slowing down and feeling horrible) at about $150-$200 each and you have yourself in bankruptcy.

The only way I was ever able to see a naturopath after my diagnosis was because I had nearly $40K in my savings account at the time.  In the first year of treatment I spent every cent of this at my natruopath.  Insurance did not cover one penny of any sort of natural treatment or supplement or office visit or blood work.  Not one cent.  My friend finds himself in the same situation with the difference that he also has a wife and two children.  We keep saying the same thing to each other every time we talk.

 "This is not sustainable."  

We both want very much to regain our health and we can both feel that we are making progress toward that goal.  We are both very aware of our bodies and their processes and if something is feeling better or worse.  His doctor (the natural doc) is very pleased with his progress, as is mine is with my progress.  Meanwhile, our oncologists are both doing what they do, which is tap our abdomen, squeeze our legs, ask us how we feel, then send us on our way until the next appointment upon which they will repeat the afore mentioned process.  It is like they are just waiting for us to get worse so they can give us more chemo.  It's not necessarily their fault, this is what they know.  It may be all they know.  Even if they did know more about diet and supplements they cannot recommend that you pursue them as a treatment.  They could lose their license for that.  So they wait for the cancer to come back so they can give chemotherapy which has been proven to be ineffective.  Chemo has never cured cancer, it treats it, beats it back for a while and if the cancer does come back it is usually resistant to the previous chemo making it necessary to seek another form of treatment.

Until I began doing coffee enemas two days ago I had been feeling pretty bad for weeks.  My liver had started hurting badly again, so bad sometimes that it would stop me in my tracks and take my breath away.  Naturally I have been worrying a bit about scan day.  After three coffee enemas I have less pain and I feel much less bloated.  Another natural treatment for stimulating the liver and bile and detoxifying dead tumor material out of the liver but did my oncologist ever tell me this? Of course not.  This has been used as an effective treatment for over 50 years!  But no one can patent it.  Chemotherapy costs $5K-$10K each treatment.  Insurance covers this.  Chemotherapy causes secondary cancers, organ damage and failure, and other problems.  Health insurance will cover this too.  They will cover your oxycodone, vicodin, prednisone, lorazepam, and hundreds of other pharmaceuticals that cause other health problems but they will not cover a $60 bottle of supplements or IV therapy or even a visit to a natural doctor to find out what you can do for yourself to be healthy so that you never have to rely on pharmaceuticals in the first place.  

Since my liver has been hurting more lately it has gotten me thinking about "what if".  What if the scan is bad and the cancer is growing again.  What would I do?  I know that oncologist would want to get me started on chemo again, but I have decided that I don't want to do that anymore.  I barely made it through the last round with my health and sanity still somewhat intact and it has been over a year since my last treatment and I STILL deal with issues from it on a daily basis.  Some have gotten better or gone away but some still persist making things like concentrating or organizing thoughts very difficult.  I certainly don't want to go through that again.  

This is where the dilemma begins.  Insurance only covers chemotherapy and pharmaceuticals.  It covers NOTHING at all related to NATURAL MEDICINE.  So does this mean that if you have cancer you only get to live or be healthy if you are wealthy?  It certainly seems that way to me.  Our current system is set up to keep us reliant upon pharmaceuticals even when they are proven to more often do more damage to our bodies than good.  I have barely used my insurance at all since I stopped going to chemotherapy.  It covers my scans a couple of times a year and the occasional (about once every 4 months) office visits but other than that it does NOTHING for me at all unless I need an emergency room.  The redeeming quality is that it does cover teeth cleaning now.

So where does that leave people like my friend and I?  I hope it never comes to this with my friend but I will tell you where it leaves me.

I go without taking some of my supplements sometimes just to try to make them last longer.  I am supposed to be getting nutritional IV's every week but I go every 3-4 weeks just to make them stretch farther because I can't afford to go every week.  I might eat out twice a month.  With the exception of going skiing once or twice a month, I never go anywhere because leaving my house (unless I go for a walk) always costs money (either gas or whatever it costs where you are going).  It isn't easy but it is doable.  This is one reason why I will never ever say "no" to a gift card (especially to Trader Joes, Fred Meyer, or Whole Foods, you can find my address near the top of the left column :).  Next to natural care, groceries are my largest expense.  I am going to make a consultation appointment with my friends naturopath to see what he suggest I do.  My friend is on a much different plan than I am in this regards.  It is hard for me to get to talk to my natural doc as office visits are expensive.  The natural treatment that my friend is on are much different than mine and I think it would be worth me exploring other options toward health, especially IF the scan is bad news.

In the beginning I worked like a crazed madwoman trying to save my ass...some of the things that used to be crazy are now coming more routine and easy and more like the "norm".  After quitting chemo I felt like I needed a break from so much commotion.  Now I feel like I have been sitting on my laurels for too long.  I guess it was my liver hurting a lot to make me really realize that I need to begin another phase in my healing journey.  It is like it was pushing me into new territory.  I know that in comparison to some it seems like I do a lot to keep myself healthy and it is true.  It is pretty much a full time job that always requires attention.  But like I said, some things you get used to.  I feel like I need to be doing more to help myself, especially since the doctors aren't.  Hey, I'm not their only patient and besides I have no money to grease the gears.  It has been a long, long time since anyone really did a thorough check up on me, ran blood tests, looked for cancer markers of all kinds (not just the unreliable CA19-9 test or an unreliable CT scan) and started finding more angles to approach some cancer assassination, detoxification and ultimately wonderful, blissful health!  

The only problem is that insurance does not cover this.  So that is the story.  It would appear that you only get to be healthy if you have enough money to do so in our society today.  Why are things like milk thistle, green tea extract, and vitamins not covered by insurance?  Why?  Why can't we prevent sickness and illness instead of throwing drugs at them when we become ill?  Doesn't it make more sense to cover a few hundred dollars in supplements and natural therapy than hundreds of thousands in pharmaceuticals?   Why are we treating sickness instead of promoting health?

My friend and I would like to know.  If anyone could figure this out before we are bankrupt and out on the streets it would be nice.