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.