Wednesday, February 15, 2012

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 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
-hair loss
-chemo brain
-aching in bones and joints
-constant itchiness
-vision problems
-mouth/gum problems
-thinning of skin
-horrible fatigue
-metal mouth/dry mouth
-low blood counts
-shortness of breath
-burning/numbness/tingling of the hands, arms, legs and feet
-hearing problems
-loss of taste
-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.



  1. What a moving post I'm so sorry about your boyfriend. It just isn't fair that he grew distant from you at a time you needed him the most. My ex-husband was not a support (we were married when I received my breast cancer diagnosis), and he was just selfish, having me work two jobs so we wouldn't lose our housing, while he did nothing.

    Hang in there and take it one day at a time. And I agree that cancer is hell.

  2. Ugh!
    That is horrible Beth! It is so strange to me that the people who are supposed to care the most about you are the ones who can sometimes be so unreasonable and demanding, especially when you are not only the one who received such a blow but also have to endure the chemo and other treatments as well. It just blows my mind.
    Wishing you all the best of health and happiness always.

  3. I wonder if he knows what love is.I've read of partners who cheerfully change colostomy bags, clean post-op drains.Who love their partners either bloated on steroids, breast-less or not.I wish he was 'better' than he's proven to be.I don't know if he's scared to face reality and somehow wishes you were well and therefore is trying to run away from the illness, or if he's really just insensitive :-(

  4. Thandi,
    Thank you for your comment. I wonder that sometimes too. It has been a really hard road for the two of us for the last couple of years. I think that we both have different ways of communicating what we need and sometimes those things go unsaid and are almost "expected" in some ways. I truly think that he is afraid of losing me and that he may not know the best way to express that so he shuts off in ways...perhaps we both do. Things seem to be getting a little better lately (thankfully!) I really hope we can break out of this funk and rebuild our relationship to where it is even better than before. Time will tell.

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