"Sympathy" pain

Jeff and I at chemo July, 2010

I am still on cloud nine from the news from my recent scan.  Things look good here in cancer land.  I have yet to hear the words "remission" but I really don't care.  I suspect that is due to the fact that I still have cancer in my body, it is dead and shrinking every day, but it is still there.  Remission is kind of a dirty, tricky word anyway.  To be in remission means that you can just as easily be out of remission at any given moment.  Being told that I am in remission would cause me to worry about possibly being out of remission and honestly, I would rather not have that hanging over my head.  I would rather spend that energy in much healthier ways, like getting healthy, recovering from cancer and cancer treatments, regaining my mind power, focus, concentration and memory.  It still gets better on some small level every single day, not noticeably better from day to day, but better in comparison to months ago and for that I am so very thankful.

My two year "Cancerversary" was this recent Saturday.  I knew it was coming but when the day came I actually completely forgot all about it.  I guess I have had other things on my mind.  I should have been celebrating.

The boyfriend and I have been growing apart for quite some time now.  We have been losing our connection, both emotionally and physically.  I have felt it since the day he came with me to hear those words "You Have Cancer".  I can still vividly remember the look on his face before those words were even fully off the lips of the doctor.  At first I thought it was shock.  This is what I told myself for a long time.  What I failed to see, or perhaps did not want to see, is that it was indeed shock, but also some other things like pity, sympathy, and with those words the first unconscious brick was placed in the wall that would later come between us and our love for each other and lead to the demise of our relationship.

Every time I had a procedure or went for chemotherapy, another brick was placed in that wall.  Every time I confided in how much I hurt physically, how uncomfortable I was, every time I vomited or was too weak to fend for myself another brick went into that wall.  He began distancing himself from me.  He felt as if there was nothing he could do for me.  I am sure it was not easy for him to watch someone he loved having to go through such a fight for their life.  There were times he would even say out of frustration "I can't deal with this".  The first time was shortly after my diagnosis while we were in Hawaii.  It was just too much for him to handle and he shut down.  He stopped communicating with me completely.  I tried every tactic from tough love, to heart felt conversations to becoming angry and bitter but nothing could get him to open up about how he really felt.  This went on from the day I was diagnosed until one week ago.  There came a time that I finally gave up on trying to get him to communicate with me.  That was around last November.  We didn't spend the holidays together, we only hung out to ski or have a quick bite of lunch or dinner together then we both went our separate ways, usually with me going home and him going to a bar.  It was at one of those bars where he met someone who could fulfill his need for physical stimulation.  We hadn't had sex in months.  Even though we were still in a relationship he cheated on me.  This happened the day after I found out the awesome news from my last PET scan.  Perhaps he didn't feel quite so guilty about it because I no longer had cancer.  He wouldn't seem like such an ass then as he would if he cheated on his girlfriend while she was fighting for her life.  I don't blame him for seeking sexual connections with someone else, I had become unavailable to him in that way due to the lack of communication resulting in the lack of knowing how he felt about me.  I don't hate him.  Hate is a word I rarely use.  It just isn't in my vocabulary.  Much more can be solved from love than hate.

Then we had a much overdue conversation.  He came clean, and honestly talked to me about how he had been feeling for so long.  I know he still loves me and cares about me.  But there is a huge loss.  The fun we used to have, the connection we shared, the way we were so completely and deeply in love was lost the day I got my diagnosis.  All he could see was "sick Laura" and he felt as if he could do nothing at all for me.  He stayed with me for nearly two years yearning for what we once had pre-cancer.  He wished, as did I, that we could find that love again.  I watched hopelessly as my body ravaged from cancer and chemotherapy became a former vision of itself and became undesirable to the person I loved the most.  All of those times he used to sneak up behind me and hold me while planting little heated kisses on my neck were just gone.  It was if if he was afraid to touch me, afraid he might hurt me or break me or afraid that he might get "the cancer".  For two years he kept his mouth shut and did not communicate his true feelings.  He was afraid of hurting me and my feelings.  He fell out of love but never told me.  He stayed with me partly because he felt sorry for me!  He had the courage to finally disclose this to me recently.  Now let me just say that I am so appreciative to finally have an honest heart to heart conversation with him, but it still doesn't make it easy to hear that the person you loved was not with you out of love for you, instead they stayed with you because they had pity on you!  I had my suspicions that this was the case but none the less, it is still a hard truth to take.  An emotional punch to the gut, some one ripped your heart out of your chest and stomped on it a few times before returning it a bruised and broken mass.  The last two years of my life (in the relationship arena) have been a sham, nothing but deceit, dishonesty, lack of communication, lack of love, and full of someone who I though was acting out of love actually acting out of pity.

It hurts, cuts deep, makes me wonder when all of the loss that cancer brings with it will ever end.  Having cancer is a very lonely place.  I have a huge support group of friends and family out there and they, YOU, all have been my one constant in my life.  For that I thank you all from the very depths of my soul. As for my journey through cancer on a daily basis, I did it all alone.  I had no one to hold my hand when my body screamed from the toxic chemo cocktails injected in my veins.  No one to check on me when I woke up in the middle of the night vomiting my brains out.  No one to hold me and tell me that it would all be ok when I was so afraid of what was ahead.  Instead I put on a smile as best I could, tried to make it work, and hoped to god, the universe, pink unicorns, whoever/whatever that my beloved and I could make it through this and come out better on the other end.

I still love him.  I love the way we were, the luckiness and thankfulness we shared with each other in the beginning. I miss the planning and daydreaming of all the things we wanted to do together.  I miss the sweet, loving kind man I fell in love with.  This is what I will hold on to and will keep close to my heart.  Not the bitterness, lies, cheating, and pity.  We all have ways of dealing with, or not dealing with cancer.  Surviving cancer has been by far the hardest thing I have ever had to do in my life.  I found a way.  I love my life! I love my lifestyle! I love who I have become from all of this! I love ME!  True, it hurts now but I can also see that it will lead to a blossoming of character and spirit and new growth, so fitting for spring.

Hopefully this will be the last of the hurt for a while.  Time to devote to myself and helping others.  Time to heal from all of the trauma and deceit.  Time to forge a new path into a bright new future filled with love, joy, compassion, admiration, and gratitude for every moment of every day.  A time for wholeness, or Sowelu a rune that was tattooed on my body so very long ago that constantly reminds me that we are all a part of a greater whole.


And just for the record,

CANCER CAN SUCK IT!

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!