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.

My Cancer Killing Diet & Lifestyle

I have had a lot of emails about what I did for myself (other than chemo and pharmaceuticals) to kill my cancer.  In lieu of repeating myself over and over again I thought I would try my best to go over everything here.  As always, if you have any more questions please do not hesitate to send me an email asking about them.  I may not always be quick to respond but I promise I will get back to you.

THE EARLY STAGES (right after diagnosis):

 My ex bought me a copy of Kris Carr's "Crazy Sexy Cancer" and I devoured it.  I didn't take every single suggestion in the book and run with it, rather I picked through and found the ones that made the most sense for my condition, my body, my own unique person.  The day after I was diagnosed I ate my last favorite meal; a medium rare steak, baked potato, salad, and a glass of red wine and of course for dessert I had some ice cream.  The very next day everything changed.  I didn't ease into my new diet, I actually sped full steam ahead into it, no holds barred, no looking back, no if's and's or but's about it.  It was definitely crunch time for me.  I felt, literally, like it was do or die and I didn't want to die.  Yes, I thought about all the food I couldn't eat and salivated over watching others eat the things I used to eat all the while being bummed out that now I was different and one of those picky eaters who can't just order from the menu and asks questions like "Are those veggies sauteed in butter or olive oil?" and "is there any milk substitutes available?" etc.  

It wasn't even an entire week after my diagnosis when I eliminated the following foods from my diet:

Dairy (with the exception of cottage cheese and flax oil as per the Budwig protocol)

Animal products (with the exception of a little fish once a week or less)

Sugar (cancer feeds on sugar)

Alcohol (um...LIVER cancer)

Processed foods (anything that is in a package is pretty much a processed food)

Caffeine ( I drank hot lemon water in the mornings and then found an awesome product called Shakti Chai that my naturopath turned me onto because I was craving my tea like beverage)

Basically if I couldn't pronounce or recognize an ingredient on anything I purchased that was packaged I did not buy it.  It literally took me hours to shop.  I read every ingredient on every label and 9 times out of 10 ended up putting it back on the shelf.  Even the bulk food, those ingredients are posted on the bins, please take time to read them.  Don't just assume that because it says "organic" or "non-GMO" or "all natural" that is is good for you.

Most of my groceries were from the produce section and I always purchased organic food.  If I couldn't find the thing I was looking for in the organic section I either went without that certain item or found it at a different store.  While I am on the topic of stores let me just say that it is almost impossible to find healthy options that are not full of sugar, chemicals or other nasties in most conventional grocery store chains.  If you have a Whole Foods, Wild Oats, Trader Joe's (although even the Joe isn't that great either but they are getting better), co-op, or other alternative type market I would go there first.  UNLESS you have access to a farmers market that sells organic, pesticide free produce.  It is always best to buy locally grown foods, not only does it stimulate the local economy and support local agriculture but it also means that you are getting seasonal food. Eating local, seasonally grown foods means you are getting the most nutrients from them as they lose their nutrition little by little after harvest. You aren't getting a winter squash in the middle of the summertime or a cucumber in the winter etc.  You get what has been harvested recently, still full of nutrients, grown locally instead of shipped around the world, and supporting your local farmer.  Better yet, join a CSA (community supported agriculture) and get a box of fresh seasonal produce delivered right to your door! Here is a link to find farmers markets in your area...and HERE is a link to find a local CSA.

At first I ate most all grains including rice, wheat, oats, quinoa, etc.  They made good fillers for my tummy even when I had no appetite.  I would usually accompany them with veggies and EVOO (extra virgin olive oil).  I purchased a masticating juicer (good for juicing veggies and wheatgrass) and I made green juices every day. This is the juicer I have (Sampson 6-in-1) but I have also heard great things about Breville and Omega juicers too, and if your budget can afford it the Norwalk juicer is the way to go.

I also made smoothies ( I purchased a Vitamix when I still had a savings account) almost every day adding protein powder, green vital nutrient powder, chia seeds, flax seed oil, all kinds of fruit and a hand full of spinach or kale.  Even when I didn't want to eat or when I didn't even have an appetite those smoothies saved me and kept me from losing tremendous amounts of weight.  Again, when purchasing protein powder to go in your smoothie remember to get the organic non-GMO stuff, many are also vegan or vegetarian to suit your taste and/or needs and preferences. 

LATER DURING CHEMO (when I was losing too much weight):

I began incorporating more animal products into my diet, mostly for the fat.  I ate cheese again, yogurt, kefir, and meat.  I also started eating ice cream (probably not the best idea but, hey, I needed to gain weight badly).  I pretty much ate what ever I wanted at this point as I had gone from 141lbs down to 109lbs and looked very sickly.  I still avoided all processed foods and ate mostly vegetables but at this point I really had no other limits.  In retrospect if I had eaten more foods from the beginning instead of letting my dwindling appetite get the best of me I probably wouldn't have had to try to gain so much weight back.  

THROUGHOUT TREATMENT AND NOW:

I always buy organic food.  Always.  I try to eat alkaline foods (great link here to food chart) and here is another great one (cancer loves and acidic body and processed foods and meat is very acidic) so it makes sense to try to alkalinize the body.

I have not had a drink since that last glass of red wine.  I might have the tiniest sip of beer once in a great while just to taste one I hadn't tasted before but that is it.  Having liver cancer is pretty much the only motivation I need to not drink alcohol ever again.  It has been almost 2.5 years since that last glass of wine.  Not only do I save a bunch of money from not buying alcohol, but I save my compromised liver and my waistline too.  BONUS!  More money for veggies!

I have always taken supplements as suggested by my naturopath at The Center for Traditional Medicine in Lake Oswego, Oregon and highly recommend seeking professional advice from a naturopath or natural medicine doctor before beginning any supplements.  You can find my supplement list during treatment and the supplement list I am on now on my previous post here.  I also got nutritional IV's during the 2 years of chemo treatments.  I would get those on the weeks I wasn't getting chemo.  Those kept my body healthy enough to be able to tolerate nearly 50 rounds of cisplatin/gemzar.

I know that a radical diet change is extremely daunting and scary.  Comfort foods are gone! Where is the replacement for cheese?! What about my morning coffee, evening wine, or midnight ice cream craving?  Well, all that I really have to say about that is how badly do you want to live? Does your desire for food outweigh your motivation to be alive?  Most likely not.  I changed my diet in the blink of an eye.  It wasn't easy, it was damn hard! I did countless hours, days, weeks, and months of research to find what worked the best for me.  I am not you, our bodies are not the same.  Yes they have pretty much the same parts but those parts are all different.  Our metabolism is different, our blood is different, our lives are different.  What worked wonders for me may not be a good fit for you.  My best advice is to experiment and take the time to check in with your body to see if what you are doing is helping or hurting.  Getting in touch with your body is so important.  It is also something that is so hard to do when given a cancer diagnosis, especially a terminal diagnosis of a rare cancer that almost everyone dies from.  You distance yourself from your physical body, you have to just to be able to endure treatments.  My body became something that "they" did "things" to.  It was like I was outside of my body most of the time looking down watching them do things to me.  When I lost more and more weight I distanced myself even more from my physical being.  It was only after I voluntarily stopped chemo that I began bringing myself back into my body again.  I still don't think I am all the way there yet but I am more present now than when I was in a chemo induced haze.  

I want to say a bit about attitude.  I know that just having a positive attitude isn't going to get rid of your cancer or solve all of your problems BUT I also firmly believe that what you focus on expands and that your thoughts and feelings and words can and will manifest into reality.  Don't get me wrong, there were plenty of days, or even weeks where I threw my own private pity party and I didn't invite anyone else.  There were those days that I thought to myself that it would be much easier to just give up than to continue on.  There were even a couple of days that I would have rather just been dead, but those were my low points, really low points.  Other things than just the cancer contributed to this (dysfunctional relationship, crazy alcoholic ex-boyfriend relatives living with us in a house that was too small mooching off of us, cheating, lying, and being told by the person I loved that I had lost too much weight and was no longer attractive, etc.) and feeling like I was all completely alone and that no one really understood how I felt, not even me.  I feel it is important to give in every once in a while and throw your own pity party.  Cry, scream, punch pillows (or other soft things), play loud music, whatever it takes, BUT then move on.  Keeping all of those negative feelings and emotions bottled up inside is not healthy for you or the person who is unlucky enough to be in the path of your rage when you do snap.  So let it out, and let go of it.  Then as Peter Tosh says "Pick yourself up, dust yourself off and start all over again." Having a positive attitude is a good thing.  You must feel good about your choices otherwise you wont stick with them.  Before I made the decision to get chemotherapy I had to make sure I felt good about it first.  Any chemo is scary stuff.  I didn't want to have to get chemo just because they told me to.  I wanted to make sure that I felt good about it and wanted to get chemo so that I could imagine frying those little cancer cells as the poison coursed through my body.  If you are going to chemo with the attitude that it isn't going to help then it probably wont.  Worrying about something is like praying for what you don't want.  Try to focus on all of the things you do still have left instead of worrying about what may happen or what you have lost.  It is not always easy, but I am certain that you can find at least one good thing every single day to be happy about, even if you have a terminal illness.

Right from the very first moment I heard the doctor say "you have cancer" I immediately decided that I was going to kick its ass.  The very next thing out of my mouth after I heard those words was "tell me everything, I need to know as much as possible to be able to do as much as possible to kill it".  I have said this many times and I am going to say it again because it is just that important!  When you life is spiraling out of control and you are given a diagnosis of cancer and all the statistics say you only have a 2% chance of living 5 years it is time to take your control back.  In this place where you feel like your life is so out of control it is so empowering to be able to control something.  I took control of my diet, eliminated every single chemical from my home (laundry soap, bathroom cleaners, shampoo, soap, makeup, hair products, household cleaners, everything!).  I drank filtered water (and if I could have afforded it I would have gotten a filter for my entire home).  I took hot epsom salt and essential oil baths or cellular detox baths almost daily.  I got acupuncture (great link for cheap acupuncture here), acutonics, massages, reiki, other alternative healing methods, did yoga, used gemstones and crystals, exercised, got sunshine and fresh air, I did what ever made me feel good that wasn't bad for my health.

MY ANTI-CANDIDA DIET:

What is in my fridge right now

All of the chemotherapy, antibiotics from rashes from chemotherapy, years and years of birth control pills and other pharmaceuticals left my digestive system in pretty bad shape.  I was tested for candida at my naturopath (a simple blood test) and the results came back showing that I had a HUGE candida overgrowth problem.  My doc said that he has probably seen worse cases but he couldn't remember when.  Candida is always present in the body, it's not necessarily a bad thing, but when it takes over and grows like crazy it prohibits all of the good gut bacteria from doing its job.  Eating things like sugar and wheat or white rice only exacerbate the growth of the candida making your digestion suffer, thusly making your health suffer.  I have been on an anti-candida diet for months now and I am still not over it yet.  If you think that changing your diet to a more plant based diet is hard then you have no idea how hard it is to eat an anti-candida diet.  It is by far the hardest change I have made.  I have eliminated every grain except amaranth, quinoa, millet and buckwheat.  NO BREAD! lame! I love bread!  No oatmeal in the mornings...booo!  Even all of those "gluten free" mixes and products out there contain either sugar, rice flour, spelt (wheat), or all of them.  Yes you can take antibiotics to get rid of candida, but antibiotics must be followed by a thorough course of probiotics and taking antibiotics to rid your body of something that antibiotics most likely caused in the first place is kind of counterproductive to me.  There is no quick fix for candida, only band aids that mask your symptoms.  The only way to control candida overgrowth is through your diet and after all, isn't that what this entire post has pretty much been about anyway?

PET scan results and other fun stuff

She's radioactive!

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

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

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

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

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

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

Just a girl and her jackhammer

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

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

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

some of my loot!

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

first time ever river kayaking