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 :)

As if cancer wasn't hard enough...

Anyone who is diagnosed with cancer has it hard.  There are so many things that used to come so easily, and so many things that were taken for granted that are now things that a cancer patient struggles with on a daily basis.  Before I found out I had cancer I thought the hardest things I would struggle with in my near future would be finishing my 2nd masters degree, finding an awesome job that I loved, paying my bills, and saving money for the future.  At the time I was also 2 years into struggling with my previous place of employment over a serious back injury that left me completely couch ridden for months on end.  I thought that was hard...hiring lawyers, court appearances, letters and meetings with the bureau of industrial insurance, trying to prove that I was injured and continually getting sent to shady washed up physicians whose job it was to prove me wrong.  Even though I could barely stand to brush my teeth or wash the dishes, even though I was in constant, agonizing pain, the independent medical examiners kept saying that I could definitely return to my old job of digging ditches, repairing water mains, and installing and replacing fire hydrants....yeah right.

Everything was starting to move forward...surgery was scheduled for mid April 2010, I was ready to start feeling better, had my intake forms all filled out and was ready to roll, or so I thought.

WHAM!!! Guess what? You've got cancer.  A really bad cancer that people usually do not live long from because once they find this cancer it has already progressed extensively in your body.  I cancelled my surgery per oncologist's orders and prepared for a barrage of tests, biopsies, port placement, PET scans, CT scans, endoscopies, colonoscopies, mammograms, any orifice that could be poked or prodded or scanned was thoroughly checked.  As a result I completely detached from my body, almost like my head and mind were a complete separate entity from the rest of my physical self.  My body was what they did things to.  I began to not even recognize myself in the mirror.  Honestly I did not even want to look at my body because every time I saw my reflection in the mirror I looked thinner and sicker.  I would sit and stare into my eyes (the only part of my body I wanted to see) to try to find something in those brown irises that I missed, some indicator that I was sick and had cancer.  I analyzed every little speck and variance in the colors wondering why they did not tell me sooner or why I had failed to see it before it got out of hand.  Nothing....just myself staring back at me, eyes filled with guilt about how I could have possibly let it get this far.

In the following months, while I was waiting to be approved for state health insurance, I was bombarded by phone calls from clinics, hospitals, and collection agencies wanting to know when they would be getting paid the tens of thousands of dollars I had racked up in various labs, scans and tests.  I even had hospitals (The University of Washington) calling me wanting money for an appointment that I had cancelled two whole weeks before the date of my appointment. They wanted over $200 for services that never even took place!  Talk about scammers!  I told them I would be dead before they ever got money from me.  They have not contacted me again.

Once I completed my graduate studies the time came for student loan repayment.  Again, letters, phone calls, etc.  Luckily most of my loans were through the federal government and are in the process of being forgiven for permanent and total disability.  Unfortunately, I had foolishly taken out a private loan that I had to get my father to cosign for.  Now I am battling AES and Citizens bank trying to figure out how in the world cancer girl here is going to be able to pay off 22K.  It sucks that because of my bad judgement my retired father is going to be held responsible for this debt.  I have no idea how this one is going to work out yet.  I am pretty certain that he is not too happy about it.  Luckily my grace period is extended until July buying me a little more time to try to come up with a plan.

I received chemotherapy treatments for over 20 months.  I calculated that I have gotten chemo at least 40 times.  The toxic cocktail was gemzar and cisplatin, drugs that were shown in studies to have the largest effect on cholangiocarcinoma.  These come with all kinds of physical side effects:

-damage to veins
-damage to kidneys
-neuropathy
-hair loss
-nausea
-fatigue
-chemo brain
-sleeplessness
-aching in bones and joints
-constant itchiness
-vision problems
-mouth/gum problems
-rashes
-thinning of skin
-horrible fatigue
-metal mouth/dry mouth
-low blood counts
-vomiting
-dizziness
-weakness
-shortness of breath
-tinnitus
-burning/numbness/tingling of the hands, arms, legs and feet
-confusion
-hearing problems
-loss of taste
-headache
-bruising
-mental or mood changes

I experienced all of these side effects.  I am actually still struggling with some of them (the highlighted ones) which brings me to my next point.

It is often overlooked and discounted that people have mental issues, mood swings, and unstable emotions when they hear that they have cancer, and exacerbated by the toxic chemo cocktails coursing through their veins literally eating away healthy cells in their bodies and in their brain.

Trying to deal with a cancer diagnosis emotionally is damn hard, toss in some toxic chemicals and it becomes exponentially harder.  I found myself crying at the drop of a hat.  The little bumps in the road became Mt Everest for me, impossible to get past.  I found myself angry at strangers as I watched them drink their healthy livers away in the bars that my boyfriend liked to frequent.  I was angry that I had a next to impossible time finding any restaurants that I wanted to eat at, as they all seemed extremely unhealthy to me (fried food, butter, cheese, milk, sugar) and I wanted to know exactly what I was putting into my mouth.  Food and what went into and onto my body became the only way I had any control over what was going on in my world and I damn sure wanted to have some control.

In September some members of boyfriends family moved in with us.  Two adults a two year old and a 3 month old who just moved from another state and had very little money, boyfriend wanted to help as much as he could of course, family is family.  With the new house guests came a new set of problems and I soon found out that one of our new house guests had a severe drinking problem.  This was the last thing I (with liver cancer) needed to have to deal with.  Boyfriend was in school or studying or unwinding at the bar most of the time and since I was constantly home fatigued from chemotherapy, I was the person who got to deal with most of it (screaming 2 year olds with stompy feet and crying babies).  Needless to say this situation created quite a rift between everyone.  That was about as dysfunctional as it gets.  Anyone who knows me well at all knows that I have a hard time keeping my mouth shut when it involves unfairness and injustice especially when I am forced to be a part of it.  Ultimately house guests ended up moving out and returning to their previous home.  Boyfriend was angry with me for "not handling the situation well" and didn't know if he could be with someone who didn't get along with his family.  To this day I still can't figure out how anyone with any ethics at all could think it was a good idea to move in with a cancer patient undergoing chemotherapy unless they were there to help that person.  The rift grows even larger...

In the year and a half following my diagnosis I did pretty well holding it together in spite of the difficulties.  My boyfriend confided to me (after much asking "what's wrong" on my part) that he did not find me attractive any more because I was so very thin from my treatments.  We began having serious issues communicating with each other.  Perhaps it was from his fear of losing me that caused him to become distant and non-communicative.  Maybe it was my mood swings or maybe it was because in his eyes I was not quite as perfect as he once thought pre-cancer.  Maybe we just grew apart for other reasons.  Money was also becoming a huge issue for us.  I had spent all of my savings on my naturopath and started receiving government disability assistance, not nearly enough to pay the bills.  My only choice was to move out and seek government housing.  I asked him if this is what it was really coming down to as we couldn't agree on a way to make it work and his reply was "If that is what you want to do".  This literally broke my heart.  I felt (and still feel) completely abandoned by him.  Granted I know that he has a mortgage to pay and bills of his own, but aren't two people who are in love supposed to try to find a way to make it work together?  He now has a roommate who gives him the money I cant.  We hardly ever see each other anymore.  We usually correspond via text message.  I don't even remember the last time he told me he loved me or showed affection.  I guess I am silly for wanting to make things work out and for continuing to hold onto the tattered scraps of what was once a truly awesome relationship where we told each other every day how lucky we were to have found the other.  Maybe neither one of us wants to let go, after all we have been through so much together one would think that all of that adversity would have made us stronger and that cancer would have made each day just that much more precious.

So here I sit, 39 days from my two year "cancer-versary" in a shitty government housing (with other "disabled" people who most likely did too much crack or meth) that smells like cigarette smoke, unchanged old man diapers, and greasy food while garbage trucks "beep! beep! beep!" incessantly at all hours of day and night outside my window that I always leave open for the fresh air wondering how in the hell it ever got to this point.

Most days I am able to distract myself from all of the less than desirable things going on in my life.  I am usually pretty good about finding that "silver lining" in even the worst cases.  I am a glass half full kind of person, usually eager to smile and be a dork.  I still am.  I am just extremely frustrated that there is just always some new bag of shit at my doorstep that I need to deal with.  I am convinced that there is a lesson in all of this that I have not learned yet and that is why I keep not being able to find the bottom yet, get my feet back underneath me and climb the hell out of this gigantic hole I seem to have gotten myself into.

It is times like these that I constantly remind myself of my own advice and give myself an attitude adjustment.  After all, people are dying all of the time from cancer...what to I have to complain about?

My advice to myself:

What you focus on expands.









CANCER CAN SUCK IT!