I've been robbed!

There are some things that have been rolling around in my head like loose marbles for quite a while now and I need to get them out.

My life timeline

I knew that when I was diagnosed with stage IV cancer back in 2010 my life would be forever changed from that moment on.  I also knew that things weren't going to be in any small way predictable anymore.  I got diagnosed in my last quarter of my second masters degree at Antioch University in Seattle.  I had plans, big plans for my future.  For once I felt as if I was going to find my calling, my ideal career, my place in this world to make that "positive contribution to society" that I had been yearning for.  Instead it took me about 6 months to complete that last quarter.  Needless to say that at first I was still trying to adjust to my diagnosis and later I would find that I had to battle chemo brain, fatigue, nausea, pain, and doctors appointments to finally complete the rest.  Whew! That was finally done and degree is safely tucked away in my filing cabinet awaiting its new home in a frame on my wall with my other degrees.

drugs, drugs, drugs

That completed I watched as my finances shrank away to nothing.  I spent over $30K in one year on my own healthcare.  The ironic part about it all was that the chemotherapy and the pharmaceuticals were for the most part "free", covered by the state insurance I got lucky enough to receive.  The natural medicine (the IV's and supplements) were the things I paid for.  Just in case you don't know this insurance does NOT cover natural medicine.  They only cover the man made drugs that you take that might kill cancer but also kills all the good cells in your body as well.  I would take a pill to combat the side effects of chemotherapy, then take another pill to combat the side effects of the last pill, then another pill to combat those side effects.  There were many, many days I would take more than 80mg of oxycodone just to make my pain somewhat bearable.  The nurses said "that isn't much, you don't have to worry" but I was worried about the damage the drugs were doing to my healthy parts.  Don't get me wrong! Chemotherapy (or the combo of chemo with the natural) has done very well for me.  I just got to the point that I could not mentally function anymore from it and had to take a break.  Anyway, back to my point.  Bank account drained and now I am living on SSI and EBT and I am a far cry away from that career I worked so hard to place myself in.  Cancer stole that from me.  Perhaps that just means it wasn't supposed to happen that way after all and my calling is somewhere else in this world.  I still have trouble letting that go.

Pearl and my now sold kayak

The next big thing was the decision to get rid of my car.  My dream car.  I had wanted this car for so many years and I knew I would be driving it until it fell apart so I made certain to get it with all the bells and whistles.  I purchased a 2009 Subaru Outback a few years ago.  My intention was to be able to pay it off within a year or less.  Instead I found myself not being able to make my car payment (which was quite high) and making the trip to the dealer to sell it back to them.  Luckily I had paid enough on it to get out of it free and clear.  So with that I found a cheaper used Subaru sedan that only requires a $200/mo payment.  This may sound incredibly stupid and trivial to some of you out there but to me it was a very emotional experience.  I know it is just a car and it still takes me to the same places but to me it was more than that.  The car I lost (her name was Pearl) was the product of all of my hard work and effort.  It was hand picked by me and it was new so I knew I didn't have to worry about it needing to be fixed for a long time.  It was the product of my efforts.  It was something that I had strived for before my diagnosis and achieved, then just as quickly it was something that my condition, my cancer, had taken away from me.  Little by little things got plucked away. Yet another accomplishment that I still have some trouble letting go of.

My nasty apartment complex used to be
a hospital.  Kinda creepy huh?

Next came the living situation.  Since the SSI/EBT was barely paying my bills, I was no longer able to help out with the mortgage, utilities, groceries, etc.  This ultimately led to a lot of heated arguments between me and my boyfriend.  I knew he couldn't afford to do it all by himself.  I asked him if he thought it would be best for me to move into public housing and he thought it would.  Yet another thing taken from me, my home.  I am now living in a tiny 350sq/ft studio in a giant 14 story building with about 450 other people.  One of my neighbors is an alcoholic and another smokes constantly in his apartment (even though no smoking is allowed).  The smell and smoke waft throughout the hallways and before I put weather stripping around my door frame, into my apartment.  Not a very healthy atmosphere.  Oh, I cannot forget the very first time I had a friend over.  I came downstairs to meet her (you cannot get into my building unless you are a tenant) and as we walked into the building we encountered the Portland police arresting a large man who smelled strongly of weed.  Most likely a drug dealer.  As we arrived on my floor in the elevator we heard shouting and screaming coming from somewhere down the other wing of the building.  Thanks cancer.

I lost my mind.  Well I didn't so much lose it as it was stolen by cancer and chemotherapy.  Even though it has been nearly two months since my last chemo treatment I still constantly battle the fog that is a result of the treatments.  I am not so close to a mental breakdown as I was at the beginning of the year, but I still struggle with trying to concentrate on just about anything.  My attention span is just not there yet.  I easily get confused and frustrated at even the slightest things.  I cannot make a decision to save my life, so I just do nothing at all feeling hopeless sometimes often letting important things fall to the wayside because it only frustrates me and drives me to the edge to try to accomplish them bringing on yet another mini-meltdown.  I still constantly forget many things and still have trouble recalling events and finding the right words.  I will be in the middle of a sentence and just stop because I lost my train of thought and for the life of me forgot what I was talking about or going to say.  Then the person I was talking to tries to help by reminding me of what we were talking about but it only frustrates me more because I can't remember.  Thanks cancer.

I really would love to work, but if I do it has to be an awesome job with decent pay and benefits such as medical etc.  I cannot work a 40 hr week right now so part time would be a requirement.  I cannot foresee how well I will feel on any given day (although that is getting a little better) so having a set schedule wouldn't work well as I may need to call in sick or leave early or show up late from time to time.  If I worked part time my medical coverage from the state will get screwed up and my rent at my crappy studio would cost much more AND I would not get SSI or EBT (or I would get much less) so I am now stuck in a no win situation.  And just who would want to hire cancer girl who has so many needs?  For now I am going to volunteer to learn something new and to get my feet back underneath me slowly.  I HATE YOU CANCER!

Jeff & I at White Pass on a backcountry adventure in '09

The relationship with the man I fell in love with 8 months before my diagnosis has suffered greatly from cancer. Can you imagine finally finding the one you want to spend your life with just to find out 8 months later that they have extensive and aggressive stage IV cancer and the statistics all say that people with that certain type of cancer usually live less than a year? Then once you think you have a handle on all of that you have to deal with your loved one vomiting, writhing in pain, forgetting everything you have said or done recently, constantly having the same conversation over and over with them, dealing with the incredible mood swings that come from the combination of chemo and the trauma of being diagnosed in the first place. Suffice it to say that my relationship with my beloved has not been easy at all since D-day (diagnosis day). In the last year we have argued, miscommunicated, and misunderstood each other more often than not. We used to tell each other every day how lucky we felt that we had finally found each other. We would day dream about all of the things we were eager to do and experience together and spend hours talking about road trips and climbing or skiing trips or peaks we wanted to summit together. We don't do that much anymore. We hardly ever talk about anything that is emotional or involved or important. I think we are both just too raw and hurt from this whole ordeal. he needs time to heal as well. That's the thing about cancer. It doesn't only affect the one diagnosed, it affects everyone around them as well, especially those who care for or about them. It changes the person who has it, they will never be the same ever again. My therapist calls it "adjustment disorder" similar to "post traumatic stress disorder" only it has its own name. Much like anyone who goes through an extremely traumatic experience, the newly diagnosed cancer patient is broken, dismantled, and reconstructed. If they are lucky to live long enough they are somehow supposed to find their "new normal" in all of the rubble and chaos called their life that has crumbled to pieces around them like the debris from a tornado crashing down all around and you are having to watch so you don't get hit by a falling truck or boat that should have never, by all laws of nature, been in the sky in the first place. Much like picking up after a tornado the rebuilding process is slow and some things that used to be are no longer while some of them get rebuild even better than before. That's what we don't know, no one does really, which pieces get rebuilt and which ones don't. Only time will tell that.

Jeff and I at one of my early chemo treatments

 A blogger friend recently posted about "keeping the 'thief' away" in her post about a "typical" cancer diagnosis.  Her words resonated with me so much that it spurred me to post about those things that have been bothering me for so long.  After diagnosis you are in virtual, perpetual hell wondering what the scans will say, if your blood labs are sill looking decent, if all those other aches and pains are cancer, or just exactly what your day will hold for you.  I constantly struggle with these things as I am quite certain most other cancer patients/survivors do.  "Am I eating enough veggies?" "Did I remember to take my supplements today?" "Did I remember to order the ones I am out of?" "What will my next scan say?!" "When will I ever feel somewhat 'normal' again?" "Will I ever get my brain back?" "When will I ever be able to make my own living again?" "I wonder how many of my friends I have disappointed or pissed off by my flakiness?" "When will I ever be able to fully return to life again?" "When am I going to stop hurting and losing things?" I cannot expect anyone of my friends and family to understand what I feel physically and emotionally.  I know that they sympathize with me about my turmoils but they really do not understand.  So many times I have kept how horrible I have felt from those I love because I don't want them to worry about me needlessly.  I think cancer patients do that a lot, keep things bottled up inside.  There are support groups out there, but I really don't want to sit and commiserate with others about how shitty we feel, dwelling on our diagnoses and blaming cancer for everything wrong in our lives.  I am tired of cancer being the biggest thing in my life.  I am ready to move on but moving on is the hardest part.  How can one move on when they are so stuck in the place that cancer left them?  Little by little I guess, every day bringing something different, sometimes good, sometimes bad.

My super conspicuous port sticks out
like a sore thumb

I long for a new home, away from druggies, alcoholics, police arrests, people smoking in the apartment next to me, free bread on wednesdays, conflict resolution classes, signs in the laundry room telling you to not spread bed bugs (WTF!) and government housing in an old scary hospital building.  The only other time I have lived in a place so small was when I was able to walk out my front door and be in the mountains.  It isn't the small size of my apartment that I have trouble with.  It is the fact that when I leave my front door I am accosted by cigarette smoke, mental cases, drug dealers, and other undesirable things.   I make the trip from my front door to my car as quickly as possible trying to keep my eyes down and my hat pulled low over my head.  Maybe I'm stuck up, I don't know, but I really don't care to make any friends in my building.  I don't even want to go home to be alone in my tiny place where I am left to only my thoughts.

I need to do some more healing before I will be able to make my plans happen.  That is another thing that is constantly on my mind....when, WHEN is that going to happen?  How can one plan for something when everything is so uncertain and up in the air?  How can you get off of government assistance when you cannot get a job? What exactly is my plan anyway?

These are the things bouncing around in my head like a pinball threatening to make my brain tilt.  Every great once and a while they don't seem quite so bad, but they are constantly nagging at me every second of every day as I constantly contemplate "What am I going to do now?"

Right now I am going for a walk. Then I am going to spend some time snuggling with my kitty girl while I avoid doing some important things that I really need to do but only end up frustrating me and turning my brain into mush.

There.  Ahhhhh.....
I had to get that off my chest.  I can see the silver lining.  Right now I am just waiting for the clouds to part and the fog to lift.



CANCER CAN SUCK IT!

Snow day in Seattle and "The Secret Society of Laura York"

I am cuddling with my kitty in my mom's cozy apartment in Ballard watching the sparkly snow silently fall outside.  I have been awake since about 4:30.  I have never been able to sleep on snow nights.  Even when I lived on Crystal Mountain and had large storms overnight I still was too excited to sleep, thinking of all the fresh tracks and powder stashes that I would get to hit the next morning.  There is also the lovely silence that happens when it snows.  It is like mother nature put some soundproofing all around.  It is so quiet and lovely, especially when I do not have to go drive in it with all of the rest of the world.  I actually love driving in the snow, it is all the other bad drivers out there that I worry about.

I have been feeling much, much better lately.  November 30th was my last chemotherapy treatment.  I do not even have another appointment with my oncologist for a month from now.  It is strange and wonderful to not have any doctors appointments on a weekly basis.  I don't have to adjust the rest of my schedule around doctors offices.  It is nice to say the least.
Every single day I feel a little better and a little better.  I can feel the fog in my head lifting and thinning slightly every day.  I still do not have the memory or concentration that I used to and I easily get flustered and frustrated at my lack of mental concentration/abilities but I do feel like it is getting better.  Just think! If I am feeling better now how great I am going to feel in 3 months!
At my next scan in March I will be getting a PET scan instead of a CT scan.  This is helpful because the PET shows if there are any active cancer cells and the CT only show mass.  This will only be the 3rd PET scan I have had since I was diagnosed back in March 2010.  They don't do these scans often because.....YEP you guessed it! They are expensive and insurance doesn't like to cover them often.  Lame huh?  But I am glad that I am getting one in March and very grateful to be able to.

For those of you out there who have cholangiocarcinoma or for those who have loved ones with it here may be a little bit of news for you.  Keep in mind that everyone is different and what works for one person may not work as well for others AND that there are thousands of alternative treatments out there that your doctor cannot recommend because they have not been "scientifically proven" or because they could even lose their license if they recommend these things.  With those things in mind this is what I am doing right now instead of chemotherapy.  I am trying to give my body a break and let it do its own job of healing itself.  I just could not take any more chemo.

LDN (Low Dose Naltrexone):
It works through my immune system to boost it and induce apoptosis (cell death) in cancer cells.  The only downfall is that if you have any pain and take pain medication this will negate any effects of the meds.  Luckily I have not had much pain lately so this is a good thing.  It is a long term treatment with the only side effects being a chance of sleep disturbances which I have not experienced yet thankfully.  If you are interested here are some links about LDN.  It sounds promising to me.

http://www.lowdosenaltrexone.org/#How_does_LDN_work_

http://www.lowdosenaltrexone.org/ldn_and_cancer.htm

http://www.palmbeachpost.com/health/content/accent/epaper/2008/02/07/a5e_bone_col_0207.html

I think it is also used to treat other chronic illnesses such as rheumatiod arthritis and fibromyalgia.



UREA:
Breaks the water matrix around the cancer cells which cause them to stop growing.  It is especially effective against liver cancer.  I am not drinking my own urine by the way...It is a powder I mix into water/juice and drink on a daily basis.  This will most likely be a very long term to life long treatment.  It is a commitment.  Urea was the very first synthetically derived compound discovered to be effective for certain cancers (breast, skin) and especially effective in liver cancer treatment.  It was dismissed as a viable treatment in the 80's due to a bogus study conducted by "professionals" who did not follow the original protocol used by the person who discovered it (Dr. Danopoulos) in 1954 and published a promising study on his findings twenty years later in 1974.  This treatment does not have any side effects and actually does not even make it past the liver if ingested.  So this is perfect for me!

Here are some links to Urea:

http://curezone.com/diseases/cancer/urea.asp

http://www.cancer.org/Treatment/TreatmentsandSideEffects/ComplementaryandAlternativeMedicine/PharmacologicalandBiologicalTreatment/urotherapy

http://www.health-science-spirit.com/urine.html


FAT SOLUBLE ARTEMISININ:
I am also getting some blood work done to see how my iron levels are looking.  They could be low due to the bone marrow suppression going on from the wonderful effects of chemotherapy for 20 months.  The minute they are looking good we are also going to start an artemisinin therapy.  I used to take artemisinin supplements but this is supposed to be very different.  This is FAT SOLUBLE artemisinin and you either receive it in an IV form or injection form.  Somehow it creates hydrogen peroxide in the cancer cells effectively killing them and only leaving an oxygen molecule behind.  Ok, I got my facts mixed up (damn chemo brain).  Fat soluble artemisinin actually does something different.  Cancer cells have many, many more iron receptors than normal cells do.  The artemisinin binds to these receptors because they are iron rich and it actually oxidizes the iron in the cells KILLING THEM.  For some reason that I do not remember so much at this time (chemo brain) the fat soluble artemisinin can do this a lot more efficiently than just taking an artemisinin supplement in pill form can.  I know a lot of you who are out there managing your cancer with artemisinin supplements.  This might be something to ask your doctor about  (naturopath, not oncologist or western medicine doc, because remember they cannot recommend this treatment because it is not "scientifically proven" and means nothing in their world, some may even tell you NOT to do it because they do not know anything about it) Not bad!  Again, no side effects! YIPPIE!


Here are some links to Fat Soluble Artemisinin:

http://nutritionaloncology.org/Artemisinin.html


http://www.laleva.cc/choice/artemisia4cancer.html

http://www.self-helpcancer.org/cancertreatment2_1.htm

http://www.healthguideinfo.com/other-cancers/p86967/


I have yet to start the Urea and the artemisinin.  I have already started the LDN and so far so good.  Not too much pain at all and mentally it is like I have been stuck in an old coal mine and just dug my way out and can now smell and taste the fresh air of the sweet outdoors. The fog is still lifting and I'm not complaining.



"The Secret Society of Laura York"

I appears that I have my own secret society.  I think that is freaking cool! Who wouldn't?  I only found out about it last week.  On Thursday my friend Angela sent me a message saying that she really needed to see me that night because she needed to take me somewhere to give me something.  Needless to say, my interest was peaked.  We decided to meet at the Trader Joe's which is literally one block from my apartment.  I met her out front at the designated time and she suggested that we go inside.  Once inside she began to inform me that I had my very own "secret society" where a whole bunch of friends and family came together as an invite only group on facebook.  There are around 200 members! This group of people were coordinated by a friend of mine, John, from my high school years at Timberline in Lacey, WA.  He made a suggestion that if 100 of my friends would donate $1 every week then they would be able to coordinate gift cards at Trader Joes for me so that I don't have to worry about groceries! This is awesome!!!!!!  I can get almost everything I need at Trader Joe's and when my budget is literally less than $10/day this helps me out immensely!!!
I just cannot fathom the coordination and effort this took to pull together.  Thank you John and EVERYONE who has contributed to my continued health and support.  I simply cannot express my gratitude sufficiently to describe the great feeling of love, joy and support I feel from all of you.

I would like to extend another HUGE THANK YOU to everyone who has sent me cards, letters, gift cards, etc and so many wonderful words of support and love.  It is an awesome feeling to check the mailbox and get so many thoughtful mail inside.  This has truly re-inspired me and has taken so much stress off of me both financially and mentally.

Stay healthy everyone! You all have my deepest appreciation and love.

And oh yeah,

CANCER CAN SUCK IT!

Asking for help isn't always easy, but it's humbling...

Here is a link to my ChipIn account that goes directly into PayPal....
Many of you have been asking about this and here you go.....

Much, MUCH LOVE!

The Ugly Side of Life

I have been gone lately.  Not physically away from my usual place of residence, but in every other way.  The past couple of months have been really hard on me.  The added pressure and stress of 2 adults and 2 babies living with me was hard.  Actually it was far too much for me to handle, being in the midst of other peoples problems (large ones) and living in the middle of my own trying to be healthy and happy and positive and take good care of myself while I got chemo every other week and mostly felt like poop.  It was as if I had absolutely no control over my life, especially in the one area that it mattered most, in my home sanctuary.

I made the decision to place my name on the waiting list for public, or assisted, or transitional housing…whichever you prefer to call it.  I had to get a doctors letter saying that my condition was so extreme that they (he) did not expect me to live longer than 12 months.  It was a quiet but extreme blow to my psyche (which I did not learn until later would be so damaging to my mental health).  I mean I have this paper that said, “Put this girl at the TOP of the list for housing because we think she will die soon”.  Not exactly what will pump you up into a positive mental attitude.  My decision to move into assisted housing was due to many parts but basically came down to one really large and unavoidable circumstance.  I simply could not afford to help my boyfriend pay for his mortgage any longer and he could not cover it all by himself, especially since he is unemployed (well he is now working part time as a ski instructor but we all know it is not a job you do for the money, it is for the pass and the environment) and working on going back to grad school.  He is getting roommates to share the house and rent with so that he can pay the mortgage.  He already has one and is now looking for another.  So now there are two people and two dogs at my old home that I loved so much…the yard! The sunshine! The garden and compost! The neighborhood feel! Mowing grass and doing yard work! Watching the hummingbirds at the feeder! Oh! It is nothing like where I am now.

Due to the chemotherapy eating away both the cancerous cells and the perfectly good cells in my body (such as brain cells as well as other cells) it has been hard for me to cope lately.  Emotionally I am a complete basket case.  Logically I cannot think clearly or in any way to be able to make rational or logical decisions.  I collapse in a heap, defeated, lost, confused and sobbing when trying to make up my mind about even the smallest of things.  Every time I receive chemo within the next 3 hours I can literally FEEL my body off gassing, no joke! I can feel the cells in my brain and eyes being literally eaten away and I feel as if I am sitting in vapors being emitted by my own body.  This feeling usually goes on for the remainder of the evening until I am able to fall asleep (which also is not easy due to the prednisone they give prior to the chemo to help the anti-nausea medicine do its job more effectively).  I am an emotional train wreck.  Of course it would make sense that my boyfriend and I would have relationship problems.  I can’t even deal with me most of the time, how can I expect someone else to be able to?  So of course we have had problems communicating.  I did not know what to do so my mother came down over Thanksgiving to help me pack my belongings and move them into a storage unit.  I had help from a dear friend.  Then on December 8th my mom came back to Portland and helped me get most of the rest of my stuff into storage.  On the 10^th I temporarily moved into a hotel for a week to take care of some vet and doctors appointments (chemo) that I had scheduled.  This week I also ran around madly to try to get the paperwork together for my public housing to go through.  I drove to Seattle on Dec 17^th to spend the rest of the year with my mom and to wait for my housing to hopefully open up by the New Year.  I arrived in Seattle on Saturday and on Monday I got a call from the housing authority of Portland saying that I had a spot and that I needed to come right away to secure it and sign a lease.  I drove back to Portland the next day to take care of business.  365 sq/ft studio, small but clean on the 4^th floor facing west to get the afternoon sunlight.  On my way home I spent the night with my uncle and aunt who live halfway between Seattle and Portland because I couldn’t make a 7-hour drive in one day.  They are so wonderful my aunt and uncle! Then it was back to Seattle to try to visit one of my good friends.  We have been finding it very hard to get together.  I botched that visit by neglecting to stay in touch to set up a good time and day for us to get together.  I am beyond spacey and flakey.  Anyone who is close to me knows that.  I constantly forget important things.  Lately I have felt so out of control and hopeless that I avoid everyone and everything often blowing off really important things because it to just simply too much for me to handle both physically and emotionally.  Thank you chemotherapy. 

Christmas was spent with my grandmother and my mother’s family in Olympia.  Even though it was enjoyable seeing everyone all I could think about is how fucked up my life is, how I missed Thanksgiving, and now am missing Christmas even though I was physically present.  What holidays?! More like “chemo-daze” to me. Then we drove back home Christmas eve to take care of my diabetic and hyperthyroid cat (who I LOVELOVELOVE!!!) Christmas day my mother and I spent trying to relax and enjoy ourselves.  We mostly used the time to sleep from exhaustion and plan our following day, which involved driving to Tenino and meeting my aunt.  We used my uncle’s truck to move my things out of the storage into my new tiny place.  It took all day long and boyfriend helped too.  We didn’t get it all done (still things in storage, things scattered around my old house, my aunts home, my storage and my new apartment).  My life (my belongings) is/are scattered in 4 different places.  We had diner together and than my mom and aunt left to go back home as it was late and they had to go to work the next day.  I am now all alone in my place.  I cannot walk or move or unpack because of all the boxes everywhere.  I go out of my door and I am reminded about where I live…the hallways smell like smoke and the sick and elderly like greasy food and unhealthy lifestyles.  95% of the people I meet who live here tell me “You better watch out and be careful around here! There are drugs and druggies everywhere and you can get anything you want. Be careful about who you talk to.”  Those are the people who do communicate with me.  The others seem to have a fine time communicating with themselves.  I know that everyone has their own shit to overcome and I am trying my very best to not be judgmental.  I feel so completely out of place here.  I am surrounded by others who are not like me and I am uncomfortable.  I try not to make eye contact with anyone because they will just start talking to me and asking questions like “how old are you?!” “why are you here?” (like it is prison or that I did something bad to end up here) blah, blah, blah…..

I spent the first 5 days here sobbing and contemplating my life and how it came to this.  I watched Louise Hay videos trying to find a glimmer of hope among them.  They only made me feel worse.  I quite literally wanted to throw myself in front of a bus or train.  I hid from everyone and did not leave my apartment.  Locked inside with a mountain of boxes that I could not walk around.  I would decide to be more upbeat and begin to unpack a bit.  That would ultimately leave me confused and overwhelmed wondering where I would put anything, where anything was in the first place (you should try finding things you have packed away when you have chemo brain, impossible!) and if I should even unpack at all or just leave it in the box and put it all back into storage and run as fast as I could up to my mom to live with her in her small apartment in Seattle.  That opened up a new can of worms, changing medical insurance, hoping I could get insurance in WA, how long would it take, did I really want to leave Portland, etc. -too many decisions for a stressed out, emotional basket case like me to make.  I shut down.  I just sat in my apartment in front of open boxes sobbing not knowing what to do.  This has been to date the absolute lowest point in my life.  I never thought I would say that anything was harder than learning I had cancer but THIS WAS.  All I could think was that this, THIS has got to be the absolute bottom.  How could it be worse?  I felt completely alone, abandoned, lost, hopeless, afraid, uncertain, confused, beaten, overwhelmed, and like I had not only let down so many other people but now I am letting down myself and even my cat.  Where was the good?  Why does it have to be always so hard?  Didn’t I put in my time? Didn’t I put enough good karma into the world yet to start getting a little back?  I went to undergrad, then on to get two masters degrees and now I am living in assisted public housing, literally on less than $10/day!!!  Where was the future I wanted? The awesome career that I spent 8 years of my life striving towards?  WHY ME? WHY WHY WHY!!!!!??? What did I do wrong?  How can I even do anything right when I cannot even think?

The last week has literally been the lowest point of my life.

My mom came back down on Saturday with the intention of bringing me home with her.  She was very worried.  I was emotionally battered and lost.  I had a cold from the stress/move/chemo/detox/my new place/whatever.  I had nightmares every single night about being abandoned and lost and alone.  I stopped showering or changing clothes or caring about eating or anything.  I stopped functioning.  Complete shut down, mentally and physically.  Today is Tuesday, she left yesterday morning.  She helped me make my place feel a lot more homey and comfy and positive.  We did a lot of talking.  When she left she told me that her intention upon arrival was to take me home with her, but that she felt ok leaving me here because she felt that I was going to be ok.  I know it was hard for her to go.  It was hard for me to watch her go as the worry started creeping in at the edges again.

I never thought I would be in this place at this time at this point in my life.

I have made a momentous decision.  I have decided to take a break, maybe forever, from chemotherapy.  I feel it has done good, don’t get me wrong.  But I also feel that it has done equally as much harm.  I am completely imbalanced in every way.  Chemo has been doing a bang up job of killing my cancer cells but it has also done a bang up job of killing a whole lot of good cells as well.  I have not had a menstrual cycle since I started chemo, I have not been able to think clearly not even once since I started chemo, I have been nauseous, tired, ill, have had no appetite, and have had no energy for the most part since I started chemo.  I feel that it is time for me to take the completely natural approach to riding my body of this dead tumor material.  The PET scan I had back in August said “Complete Remission of Disease” but my oncologist says “you still have cancer that isn’t getting picked up on the PET scan most likely and we will continue therapy with you until the day you die!”  That day will most likely come sooner than later if I continue getting chemotherapy.  Really! The day I die! For the rest of my living days I will get chemo according to my oncologist.  This is NOT ok with me. 

The last appointment I had to get chemo was not a happy day.  I was very emotional and distraught.  I asked my oncologist for a break from chemo.  I have my next appointment on the 12^th (next Thursday).  I am going to ask for a longer break, 3 months, until we do another scan to see if they are still shrinking or growing back (they will be shrinking!)

I am convinced that the chemo is no longer doing my body good.  I feel it is time for me to gain control over by own body again and walk my talk for real now…Green juices, vegetables, NO CHEMICALS OF ANY KIND and lots of kindness to my self in every way.  Acupuncture and some natural therapies (there are lots to chose from out there to fight cancer) are my new regime.  Detuning is of the utmost importance.  Exercise! Skiing! Climbing! Hiking! Yoga! Rebounding! Finding the joy in life again.

So no more chemo…

To all of my friends and family out there that I have been so flaky with during the past 20 months of chemo induced madness let me say that I am sincerely sorry.  I know that you all care and that you all have my best interest in mind and that you truly want to see me because you miss me and care. 

I have not ever wanted to be this flaky person.  I have never wanted to go through any of this in any small way.  But this is my reality at the moment and I am working on making it better.

Please know that just because my scans show that there is a decrease in the size of my tumors etc. that this DOES NOT MEAN that I am feeling good by any stretch of the imagination.  I STILL FEEL THE SAME AS I DID 20 MONTHS AGO if not worse.  I still have been getting chemotherapy every other week for the last 20 months! Frying every good and bad cell in my body and in my mind.  I am sorry if I am not the Laura you used to recognize.  I don’t even know if that same person is still here or not…I don’t remember anymore.

I know it will take literally months to detox my body from just the chemo alone.  Hopefully the Laura you all know and love will be back in some new and different way soon.

I am literally living on less than $10/day.  Anything at all anyone could do would help me out beyond belief.  Gift cards that you got for Christmas and don’t think you will use?  Gift cards to Trader Joes, Whole Foods, Fred Meyer, Target, Costco, whatever I can use any of these no matter if there is only $1 on it.  You can also send me a private message if you wish, those would go a long way right now for giving me the mental and emotional support I need as well, even a card is wonderful if you prefer the old fashioned way.  Tell your friends, tell them to tell their friends.  You don’t need my permission to share my story with others.  If you know me well at all, you will also know that I am pretty much an open book.  I wear my heart and emotions on my sleeve and I have been withdrawn lately.  I know something is up and I have avoided telling my story for so long now it hurts.  I need to get this out of me and into the universe knowing that I am supported and loved in every way and every minute of every day walk in gratitude and joy being present in this moment and grateful and fortunate for it all…Ahem….

I still have some t-shirts “Cancer Can Suck It!” if anyone is interested just let me know.  I also have “Cancer Can Suck It” “I’m A Cancer Assassin” buttons/pins for sale.  And as soon as I can afford gas to go back to the coast I will have more supplies for making mobiles. 

My new address is:

4400 NE Broadway #406

Portland OR 97213

I would love to hear from you.  Right now it is time to make some green juice and go for a walk.  That is at least a good step in the right direction.

Peace, love, light, health, joy, gratitude and many blessings to all in this wonderful New Year of 2012.  Every day is a blessing.

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!

Sick and tired of being sick and tired

An old Halloween picture.  I was about 24 years old here.

I've been having that guilt lately.  The "I wanna really write a new blog post and I really have a lot to say, but I really don't have the energy or the motivation." guilt.  I know many of my other blogger buddies out there know this guilt too.  I wont lie, its been rough lately.  I haven't felt very energetic.  I've been tired a lot and doing a lot of sleeping.  I've been mostly upstairs kind of keeping my distance from everyone (we have some house guests/family staying with us for a few months, 2 adults and 1 toddler and 1 infant) trying to not get sick from the extra germs in the house and making room for 4 more people.  Sometimes I feel like Rapunzel locked away high in a tower waiting for her prince to save her, but mostly I just feel tired and not very much like being social.
I've been neglecting/avoiding my vitamins and supplements.  It seems like every time I take them now I just end up getting sick, wasting money by just flushing them down the toilet.  I have an appointment with my naturopath and the new natural oncologist that just recently started working at the Center for Traditional Medicine.  I am once again very lucky, not only to have another awesome doctor on my side who just happens to be a natural oncologist but he also happens to know my "normal" oncologist (he was actually trained by Dr Shao) and they are all on the same page and all know exactly what is going on with me in every aspect which is nothing short of a gigantic blessing in every way.  We are going to discuss my progress in the assassination of my tumors, and how I perhaps now need to focus more on detoxing all of the dead tumor and getting it out of my liver and out of my body instead of concentrating so hard on killing it like I have been for the past 1 year and 8 months.
Everyone keeps congratulating me on my "success" of beating my cancer.  I have very mixed feelings about this.  First of all I want to say most sincerely and from the very bottom of my heart "Thank You".  I have to add though, that I do not feel like celebrating yet.  My oncologist is not convinced.  He says that my cancer (cholangiocarcinoma) is so slow growing that it might not show up on a PET scan and even the guy who said "looks like you've killed it all" was of the opinion that I need to still get chemo for a while just to make certain that all of those bastards are all indeed dead.  So chemo it is, at the very least until the end of this year and then even after that I still may get chemo until the end of spring.  I mean, hell, I've already been through nearly 2 years of chemo, I may as well make certain that I killed them all, what's another few months....So even though I got good news a couple of months ago, I still don't feel it yet.  I still feel tired all the time, I have exercised and gotten out of the house much more infrequently since the arrival of the house guests.  I've been visiting my mom a lot up in Seattle, mostly using that time to sleep and relax or take care of business and trying to shift bills around and change contracts on things to free up a few more dollars for groceries, cat food, etc.  At least once or usually twice (sometimes even 3 times each week) I have doctors appointments or some other type of appointment so I do get out of the house for those, but there are even those times that I feel so crappy I call them and reschedule those appointments.  Honestly I was a little surprised that I got chemo last week as I was feeling much more drained and tired than usual, but the doc said my numbers looked pretty good so we proceeded.   I did get a shot of Aranesp to help me build my red blood cells as they were once again in the toilet.  I guess that stuff is so controlled that even chemo patients can only get it if their red blood cell count falls waaaay below healthy levels.  That particular shot combined with the usual steroids I get before chemo is enough to keep me wide awake until the wee hours of the morning.  I didn't even lay down in my bed or attempt to try to sleep until 4:30 in the morning that day/night.
I wake up completely drenched in sweat at least 4-5 times each and every night.  It literally is dripping and running down my body, my pillow is soaked, my tank is soaked and my legs are even wet.  I literally feel like I stood out in the rain, that's how wet I am.  Then I begin to itch from the sweat.  I constantly itch anyway, it is a wonderful side effect of cholangiocarcinoma, but the sweat itch is THE worst!  I have a huge rash on my face from all the drugs I take, exacerbated by stress and sweat and toxins that my body is trying to flush out.  Once the sweat is drying I then begin to freeze and shake, so once again I grab the blankets and in less than 30 minutes I wake up drenched in sweat again.  This process repeats itself throughout the night until I finally just get up.  Sometimes I go out for a walk and wander the neighborhood at 3 or 4 in the morning hoping that it will cool me down and make me tired so that I will be able to go home, sneak quietly upstairs trying not to wake anyone up,  and crawl back into bed and snuggle with my kitty until I blissfully fall asleep only to wake up around 7am to try to start the day, only to repeat the entire process all over again.
Lately the chemo has been making me extra tired.  I fear that I am backsliding healthwise and I don't like it.  Supposedly everything is supposed to start getting better once you receive news of "remission" but I keep waiting to feel like it.  Don't get me wrong though, I am SO HAPPY to hear that I am indeed kicking cancer ass! I am so incredibly thankful to have my doctors and nurses by my side.  I am blessed that they are so smart and caring and on the cutting edge of health care.  I feel honored that they actually care about me and like me not just because I am their patient but because I am me.  I am also incredibly blessed to have such a wonderful support network out there and so many wonderful friends and family to support me on this arduous journey.  You all are my inspiration and are what keep me going when it is crappy and I begin to lose hope of an end being in sight.
Basically I guess that from time to time I need to have my own little pity party.  I have really been needing to get this off my chest.  I wont feel like I celebrating until it is all over, the cancer is gone, I have my memory back and my body back and my life back.  I always feel so horrible for posting such negative things.  I know that you all don't always want to hear happy, positive stories.  I know you really want to hear about how I truly feel from time to time.  Right now I am feeling pretty sick and tired of being sick and tired.

Guest Blogger, Trevor Bradshaw talks about mesothelioma.

Great little exhibit at the OMSI about nanotechnology.

Since we are getting tormented by pink everywhere we look and since most of already know that October is officially "Breast Cancer Awareness" month, I would like to take this opportunity to talk about cancer in general by raising awareness about yet another type of cancer that is equally as deadly as breast cancer but one that doesn't get all the attention (no boobies here)....This is mesothelioma.  I have a very concerned guest blogger this morning who has some great information to share with us.

Many thanks to Trevor Bradshaw for his enlightening and heart felt article about another cancer...mesothelioma.  Please enjoy and much peace, love, light, joy, happiness and health to all.

Mesothelioma and other Preventable Cancers

We are always bombarded with information about how important early awareness is to a healthy cancer recovery, and it’s true you have a much, much higher chance of survival the sooner a tumor is discovered and cancer is diagnosed.  However, there’s an even earlier awareness we ought to pay attention to- the environmental causes of several deadly cancers that could be eradicated completely with the right precautions like mesothelioma. 

What is mesothelioma? Mesothelioma is a rare but deadly cancer of the lining of the internal organs that’s only known cause is exposure to asbestos.  Asbestos, which was once marketed as a wonder material for its cheapness, versatility, and flame-resistance, is made up of small, microscopic fibers.  When these fibers, which oftentimes flake off, are inhaled they agitate the inner lining of the body, called the mesothelium, and even a single microscopic fiber can cause cancer.   

             While you may suspect that because mesothelioma kills nearly 100,000 people worldwide each year the production of asbestos would have stopped but several developing countries including India still use asbestos as common construction material. In fact earlier in this year, even as doctors conducting mesothelioma clinical trials were spending millions to search for a more effective treatment for this deadly cancer, Canada reopened the world’s largest asbestos mine, the Jeffery Mine.  It’s outrageous that if we want to prevent cancer that even though asbestos has been a known deadly carcinogen for years it is still being produced. 

And it’s not only mesothelioma either.  Cervical cancer has long been linked to HPV, a sexually transmitted disease that can be prevented with a vaccine, yet is still one of the most prevalent cancers in the United States. Strong campaigns against cigarettes and tanning beds have proven that people are willing to acknowledge the risks associated with cancer-causing behaviors. It’s time we turn our focus from simply aiming at providing information about the importance of screenings and the early detection of cancer, and start thinking about how we can further work to prevent cancer from occurring in the first place.  

October is also liver cancer "awareness" month, who knew?

I recently came upon a website that I found very interesting for those of you out there in the collective cancer family (you know who you are).

It has got some really good resources there for those of us in need and, hey, lets face it we all have a need or two don't we? It is called 1 Up On Cancer and you really should give it a look.

It is chalked full of all the goodness we all so need such as resources on Freebies & Discounts for cancer patients to Tips on Nutrition and cooking for cancer prevention to some NON -CANCER humor to help put a little smile on your face when you most need it....like RIGHT NOW!

This is also a great site that I recently discovered called Is My Cancer Different? and why, YES it is, because we are all different and respond to the same thing in very different ways.  This site has videos that give some good but basic information (and that is good sometimes for us with chemo brain) about how your cancer (no matter what kind it is) is definitely different because you, my dear, are different.  It is also worth a look.

It is something I just couldn't keep to myself.

On the same note there are some really great bloggers out there that I also just discovered and I wanted to share the rest of these in the spirit of October being breast cancer awareness month.  Actually it is also LIVER cancer awareness month (did you know that?) and yours truly has liver cancer....Well actually it is specifically BILE DUCT cancer but because no one knows how to test for or discover it when it is actually in your bile duct it gets written off as being IBS for 15 years before they discover it and by that time it has metastasized to your liver and NOW it gets classified as "liver cancer" because there is no "bile cancer day or month" but anyway, I digress..... back to the great blogs as of late.

I highly recommend checking these out they are right on the money (no pun intended) and call it how they see it when it comes to breast cancer "awareness" and who is really racing to find a cure.  These ladies have all been affected with breast cancer, even metastatic breast cancer and `find no comfort in raising more awareness and ask instead that you give to organizations that really do contribute those dollars to finding an actual CURE for breast cancer.  Heck while we are at it lets also find one for cholangiocarcinoma, and in the meantime I will be trying my hardest to do the same.

Please give these wonderful sites a fraction of your time and consideration.  You will also be able to find them along with other wonderful blogs on my sidebar at the right. If I left anyone out I am sorry, there (thankfully and in a way sadly) are just too many of you great bloggers out there! If I do not have your link on my sidebar please contact me and let me know, I will gladly add it.

Blessings to you all and good health.


Alright Tit, by Lisa Lynch  "The Post I Never Wanted to Write"

The Cancer Culture Chronicles

Pink Ribbon Blues, by Gale Sulik

Boo-Bee Trap

Being Sarah

Uneasy Pink

The Accidental Amazon

Komen Watch

Nancy's Point

Dispatch from Second Base

The Feisty Blue Gecko

I Hate Breast Cancer

Breast Cancer? But Doctor.... I Hate Pink!

Not Just About Cancer

More good things I've stumbled upon recently that I cannot keep to myself because I know they will help someone!

Imerman Angels one on one cancer support

Manage Cancer- Cancer Care Resources