It's been a while...

I feel like nothing is going on and everything is going on at the same time.  Things have been mostly more of the same, going to IV's on a regular basis and spending a lot of time in doctors offices and clinics.  When I haven't been there I have been spending a lot of time with my family.  I have been so busy for months but it has been a good kind of busy and the past three months have just flown by.  I have been hanging out at dads quite a bit and I even caught my very first salmon!  Another check for the bucket list :)

Cooking breaky

I went on a road trip with my mom and aunt at the end of May.  Our whole trip was rock hounding in southeastern Oregon.  We found lots of agate and sunstones and some apache tears, the weather was nice and I always love camping.  I always sleep better in a tent in my sleeping bag than I do at home in bed or in a strange hotel with crunchy bed sheets and never enough soft covers.  A nice soft sleeping pad and puffy sleeping bag is always the preference in my book and feels like heaven.  One night we even got to sleep in a teepee!  It was awesome and now I totally want a teepee.  I felt like I was back in time sleeping next to the crackling fire in the teepee.  Does it really get much better than that?!  Way better than a hotel.

After my little trip it was back to the grind of chemo and C IV's.  I also had a CT scan in June.  I was really hoping that the results would say "What cancer?" and my plan was to hopefully take a break from chemo for a few months.  Lately, I have really been feeling the effects of the chemotherapy and scheming up a plan to take a break.  Every time I get it lately it feels a little worse each time, like it's starting to eat away my brain again, making me very tired and low energy for about a week afterward.  My blood counts are looking pretty good though (as good as they are going to on chemotherapy anyway) so I really am not complaining too much because things can always be worse.

Firemaker!

Soooo.....back to the scan.  The scan showed that there is a tumor that started growing again and it has actually grown 30% in the last two months, so it is something to be concerned about.  My oncologist  contacted my radiologist and together we determined that the best course of action is going to be to get internal radiation again (Y-90 or yttrium 90 radioembolization).  Remember the last time I got radiation?  It was last year on Valentines day and it unexpectedly wiped me out for months.  This time I am manifesting an easy recovery.  I know what to expect and I am pretty sure that I have my meds sorted out this time.  They are also going to only radiate one tumor on the right side of my liver.  Last time they radiated numerous tumors in the smaller left side of my liver which was right against my stomach and I feel that is what caused a lot of the pain and delayed my recovery.  The right side of my liver is the more "healthy" side and it has actually grown about 30% to compensate for the carnage on the left side of my liver.  I am thinking that because of these things this radiation surgery shouldn't be nearly as bad as the last one, right? Yes, right :)

Me and my mama in a beautiful canyon

This procedure is going to happen at the end of this month.  My mom and I are going on another road trip tomorrow to do some more rock hounding and some touristy sight seeing for a couple of weeks (more camping and late night stars!) and once I return I will be getting an angiogram surgery to map out my veins and blood vessels, and to measure how much of the Y-90 they will need to blast my tumor into the next dimension.  After they determine those measurements and routes through the superhighway of veins and blood vessels to the tumor I will have approximately 7 days before the radiation surgery happens.  By my calculations after I return from this road trip I am going to be busy for a while...However, I am going to heal fast, fast, fast!  Once I am all healed up from my radiation my father and I are planning another rock hounding adventure in Colorado and Utah.  I figured I might as well have something to look forward to in order to heal faster from my surgery and radiation.  The promise of hunting rocks and sleeping under the stars should do the trick :)

I'm hoping all of  you out there are having a wonderful summer and are all happy, healthy, and full of life!

Cancer Can Suck It!!!

"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!

Would you like some WHINE with that?

Wow!

It's been a while since I have posted, over a month.  Things have been extremely busy, hectic, emotional, and tiring lately...so much so that I have not even had the energy to make a new blog post.  Here is a little forewarning that this post could be all over the place (much like my brain) as there are lots of things I want to share.

Sausage making with my uncle.  Its more fun to make than to eat.

I hope you all had a wonderful Thanksgiving.  Mine was spent packing up boxes full of my belongings with my mother.  The next day (black Friday) we spent the day moving all of those boxes into a storage unit.  I am moving out of my current home soon.  I cannot afford to stay there boyfriend can't support the two of us, especially since he is a student and is currently not employed.  So I am currently on the wait list for public housing.  I am at the top of the list actually.  I get "priority" because I have a disability and condition that no one expects I will survive more than 12 months from.  Isn't that lovely?  This public housing will cost me 30% of my paycheck....which is a modest $674/mo meaning that it will cost roughly $201....so I am supposed to somehow live on $447/mo...yeah, right....gas, car pmt, insurance, phone, utilities, FOOD, cat supplies....you see where I am going here.  Obviously this isn't going to work either but I guess I will cross that bridge when I come to it, which will hopefully be sooner than later....

Cancer Can Suck It!

Cancer is a bitch, really it is.  It not only destroys your body and mind, it also wreaks havoc on ALL of your relationships and friendships often destroying them as well.  People get tired of taking care of "cancer girl" all the time and become resentful.  After all, "cancer girl" gets all the attention, even though she did not ask for it and just wishes that things could somewhat resemble "normalcy" once again.  It really fucking sucks to know that you are lame and screwed up in the brain and weak and too skinny and forgetful and nothing tastes good, and there is no energy to stand in the kitchen and cook and you have no money to order food anywhere anyway.   I pretty much have been living on yogurt and granola for the past 4 months or so...I would LOVE to have some subscription to some sort of "pre-made" meal service or some stock of yummy meals in my freezer so that on those days (and there are MANY) that I don't feel like cooking (often cooking food makes me nauseous and I no longer want to even eat it) so I could just pop a pre-made meal into the oven and rest while it cooks itself.   Wouldn't that be awesome!  Perhaps Santa will leave that under my pillow this year (can't afford a tree this year, let alone any presents)....

Life now is obviously not what I would have expected it to be.  I was in grad school working on my second masters degree only a quarter away from graduating for the second time when I got the diagnosis of the big "C".  Things were looking so great for me and my career.  I was supposed to be doing something that I loved and was passionate about but instead I sit in chemotherapy killing cancer (and many other good cells like brain cells, white and red blood cells, bone marrow cells, etc) and wondering how I am going to pay my bills, where I will move to, when I will ever get to move, if boyfriend and I will have another stupid argument about nothing at all because there is a larger underlying issue that we can't seem to get past, and if I will have the energy to take care of myself for another day/week/month.  I constantly worry about not getting enough to eat, enough exercise, if I took my pills today, if I am forgetting something important, if boyfriend still loves me or if he is finally tired of all the cancer bullshit yet.

So I am in limbo...in every way.  Limbo, waiting for housing to open up....Limbo, waiting for CT scans PET scans, getting chemo because no one knows what else to do because NO ONE has ever had such success in battling cholangiocarcinoma and they are stumped so lets just keep on administering chemotherapy because her symptoms aren't "that bad" comparatively speaking.  Limbo, waiting to see if things will get better hoping and PRAYING that the next scan doesn't show growing cancer cells.  Limbo as you wait for your life to start again instead of going from doctors appointment to doctors appointment and life revolving around healthcare.

I also had the WORST vet appointment ever last week at the Fremont Vet Clinic in Portland.  Seriously, DON'T TAKE YOUR ANIMAL THERE unless you want to have them TORTURED by their staff.  They are by far the absolute WORST vet clinic I have ever had the misfortune of visiting.  They did not listen to my requests or advice regarding my cat (who only has a very limited window of time before she becomes very very angry, hissy and extremely stressed and unpleasant.  They completely ignored me and my concerns.  They came at my cat with a bright orange towel (my cat doesn't tolerate towels coming at her) and ignored me when I told them that the towel would only make her behavior worse.  I expressed my disappointment and concerns in a very calm way at first, then as I heard my cat screaming through TWO CLOSED DOORS I lost my patience.   The staff were all lolly gagging around the back room while this was going on and as I waited for half an hour before we even saw the vet in the first place.  They did not even get to trim some matts off of her belly or trim her nails because she was so worked up.  They then proceeded to call me the next day with blood test results, told me she had a hyperactive thyroid and that she needed medication and then the doctor proceeded to HANG UP on me!  No once did anyone ever admit that they could have handled me or my cat with more respect nor did they apologize for being half an hour late with my appointment.  They were too high and mighty to do that.  I made an appointment with a holistic vet in Hawthorne the very same day and I must say that they are excellent and would highly recommend the Hawthorne Vet Clinic to anyone in or near PDX.  There is NO NEED to put up with "holier than thou" vets such as the people at the Fremont Vet Clinic, and your animal does not need to be tortured by these beasts either.  If this is your vet, do you pet a favor and take them right away to the clinic on Hawthorne where you AND your animal will get treated with respect and compassion rather than with poor attitudes and bad practices.

I really hate to whine and complain but the times are ripe with disappointments and let downs lately.  The bright spot is that ski season has started and I have already been skiing twice in the month of November! THAT I am not complaining about...

On another note, here is my Christmas wish list....

Trader Joe's gift cards (for groceries)
Fred Meyer gift cards (for groceries and household supplies)
Costco gift cards (for some groceries and household supplies such as cat litter and pee pads)
New Seasons gift cards (groceries)
A massage (it would feel oh so good!)
A trip to the dentist (Dr Perry Jones in Ballard (seattle WA) for a teeth cleaning
Pre-made meals or a subscription to someone who does this (for those times I have NO energy to make food for myself which is OFTEN)

As you have probably been able to tell from all of my whining in this post, things have NOT been very fun or easy lately.  Luckily the house guests are gone now and there is a tiny bit of peace in our home...however we are left with a bunch of stuff (furniture clothing etc) and LARGE utility bills to pay due to it all, along with all of the broken things that were left in their wake.  Fun. Just what I wanted/needed....more stress, gee, thank you...Housing please come through soon!!!

Just when you think things couldn't possibly get worse and you have finally found the bottom of that pit, they do and the bottom falls out anyway because you weren't really at the bottom yet....I guess....Some days are harder than others and some days are extremely emotional thanks to the drugs and the stress.

But somehow things always find a way to get better, it might take a LONG time sometimes or at least it feels like it takes forever but it does eventually happen.  I think, for me, I need to take things slowly and realize that I only have so much energy and that I need to decide what to spend that energy on...like skiing and cuddling my kitty girl!

Day 58

Called the Mayo Clinic today, talked to them on my way to my chemotherapy appointment and to see my homeboy (my onc.) Turns out that I am not a candidate for a liver transplant (living or deceased) because I have so much cancer in my liver (all over all lobes) and a giant tumor (9cm) on the right side of it, that they wont transplant me for medical reasons that anyone has yet to explain to me. Apparently they said the cancer spread all over my liver and that is why they can't give me a new liver. Now, I know i am slow because of the whole chemo brain thing but does that make any sense to you? Come one guys! Give the girl a liver here cause if ya don't the cancer will spread outside of the liver and then things will get really ugly. Give the liver to someone who needs it, like ME dammit!

Sheesh.....like the old saying goes, guess if you want anything done right you just gotta do it yourself sometimes. I've gotta find my own inner owners manual, bust out the coveralls, roll up my sleeves and and get my thigh high cancer ass kicking boosts on and get medieval on those nasty little bastards!  I fried 'em today.  Yeah, take that!

Didn't qualify for social security because The City of Redmond, where I used to work, doesn't pay in to social security.  They have some other benefit account and you pay into that instead.  When I left there to go back to school for my MaEd I took it all out (about $5000) to live on while I was in grad school.  So now, nothin' honey :)  They said that I might qualify for some other benefit though and I will know about that at the beginning of June.  It depends on the severity or stage of my cancer and since I am what they call a "Stage IV" I will get through the system quicker because the diagnosis is grimmer.

Speaking of grim statistics, if you look up the statistics for cholangiocarcinoma they really don't look very good at all.  Here is how I feel about that.  These statistics are based on 60-70year old something people who already have other health problems like high cholesterol or diabetes or heart trouble or all of them and then some.  These are not statistics based on "Laura York".  I make my own damn statistics.  What you focus on expands.  I learned that from a wise friend long ago.

That's the news for the day.  Oh, Clark and I are having a contest it seems to see who can get the most hair on the floor.  Have a nice night, I'm gonna go zone out in front of the t.v. now and wait for my honey to get home from school.

And yes,

CANCER CAN SUCK IT!