Supplements...Why they are good for me and maybe you too.

I have been a getting neglectful about taking my supplements lately.  Over the summer last year I was really nauseous from just about everything and I began taking less supplements since I didn't want to sacrifice them to the porcelain god (nothing stayed down and let's face it, they cost a lot of money).  This kind of ended up turning into a habit that led me to the point of forgetting (a lot) to take my supplements, well, that and they are expensive because I take a lot.  I have been doing that with another medicine I take on a daily basis as well, my LDN, but I was reminded recently by one of my angels that I shouldn't be doing that.  It's weird how the universe works, just when I was reminded about slacking on the supplements my nurse calls and reminds me how important taking my LDN and UREA every day are.  Of course she called under the pretense of wanting to update my current medical chart and to verify what I was taking.  She is sneaky, lovey like that.  She calls me Sugarbuttons.  I love her!

I am reminding myself of how important it is to take my supplements by posting about them here on my blog.  I get a lot of questions about the supplements I take and I thought that as long as I am reminding myself of how important it is to take them I would share that information with you all too.  After all, that is partly why this blog is here so you don't have to do all that research or at least so that it can give you a good starting point for finding more good stuff.

I have decided that the best way to remind myself about the importance of these supplements is to research the beneficial properties (and those specifically related to cancer) of each and every one.  If it is one that has multiple ingredients such as Liver Support, then I will explore each ingredient.  I have been learning a lot! Don't get me wrong, my naturopath has told me why these are important but a) I forgot, b) there are a lot, and c) why not learn more? Instead of just blindly taking my supplements I will know just exactly how good they are for me each time I swallow one and I can be mindful about sending them on their way to do their job in my body.

my supplement basket

I take a lot and instead of bombarding you (and me) with all of them at once I will break them down into smaller groups.  On the list today are Green Tea Extract, Quercetin, Curamed, Vit D3, and Shark Liver Oil.  You can find almost every one of these on Amazon but I will provide the link to the exact brand I take if I can.


Green Tea Extract
Green tea extract has all kinds of good stuff in it called flavonoids.  Flavonoids have antiviral, anti-inflammatory, anti-allergic, anti-tumor, and antioxidant properties.  They protect cells against cellular damage such as cancer, aging, atherosclerosis, inflammation, and neurodegenerative diseases.  You can find flavonoids in apple skins, blueberries, broccoli, cabbage, capers, onions, strawberries, red grapes, red wine and tea.  Quercetin (found in fruits, veggies and onions) is one of the most potent flavonoids and is great for many things (I will cover this later).   I take 1 cap/2x day.


Quercetin

As I mentioned above quercetin is one of the most potent flavonoids.  Studies show that quercetin is great defense against allergies, asthma, heart disease, high cholesterol, RA, bladder pain or bladder infections, prostate inflammation, and cancer.  I take 1 cap/3x day.

CuraMed

This contains both micronized curcumin (for better absorption) and turmeric essential oil and phospholipids which make up the construction of cell membranes.  Curcumin is great for your intestines and digestion, has anti-inflammatory properties, boosts cellular gluatathione levels, prevents liver damage, detoxifies the liver, and helps keep the liver healthy during chemotherapy and cancer treatments, and it can help prevent and treat cancer.  I take 2 caps/3x day.

Vitamin D3

I had no idea that vitamin D was so great for you.  Vitamin D promotes intestinal calcium and phosphorus absorption, supports cardiovascular function, colon health, and general cellular support and is well known to kill cancer by causing apoptosis (cell death).  I take 1 cap/day.

Shark Liver Oil

I think that this one surprised me the most.  I think I just assumed that since it was liver oil it must be good for my liver and never questioned why but wow this one is great!  Shark liver oil boosts the immune system, fights infections, heals wounds, treats cancer, and lessens the effects of conventional cancer treatments making it great for anyone going through chemotherapy or trying to get over chemotherapy side effects.  Shark liver oil contains alkylglycerols which kill indirectly kill cancer cells by activating the immune system.  Alkylglycerols are found in mother's milk as well as certain class of fish called elasmobranch which are distinctive for their gill structure.  The alkylglycerols stimulate the bone marrow cells to make white blood cells, red blood cells, and platelets making it great once again for those of us who have low blood counts and leucopoenia.  I take 2 tabs/3x day...right now I am out so this is on my supplement wish list.  

I am so glad that I decided to take a closer look at my supplements and get myself reacquainted with them again.  It is less of a burden to take so many pills knowing that they are so good for you! It certainly makes them easier to swallow.  To see my entire supplement list during and after chemo please check my recent post Questions Answered.  And as always please seek professional advice preferably from a naturopath or other natural doctor before taking supplements willy nilly please.

Giving Thanks. What a difference a year can make!

I have been doing some reflecting these past weeks.  Thinking about what was going on this time last year and how much things have changed since then.  There is a lot to be thankful for.

At this time last year I was living with my ex.  His sister and her family (her husband, a 2 year old, and a 2 month old) had been staying with us indefinitely.  They weren't helping out with the household finances in any way.  If anything they were using way to much water (washing the coffee pot out for 20  minutes at a time), generating too much garbage (one entire kitchen sized bag every day), sneaking alcohol into the house (someone was an alcoholic), and in general causing a lot of problems for my boyfriend and I.  I remember all of the fights and anger, all the tiptoeing around everyone.  I chose to take the upstairs room as my escape from all the noise and drama unfolding downstairs.  My ex was hardly ever home as he was in school at the time and when he was not in class or studying he was at the bar escaping the situation.  Lets just say that things in our home were not happy in the slightest way.  I am not one to keep my opinions to myself for very long, especially when the situation is not improving and even more so if it is going on in my home.  I voiced my opinion on many occasions, nicely at first then as time went on I became more vocal and more pissed off at the situation.  I felt it was horribly disrespectful to have an entire family living with us, a family with two small children and an alcoholic.  A family where no one was seriously trying to get a job or help out with anything at all.  I made enemies not only out of my boyfriends family, but by this time my boyfriend hated me too.  He couldn't understand how I could be so cold toward his sister and her family.  I was pissed that I had liver cancer and somehow it was ok to just sit and watch an alcoholic destroy their family and my relationship.  No one else seemed to care.  Boyfriend just went off to the bar, and I was the one who was being the bitch.  Who cared if I was in chemotherapy at the time?  Who cared that I only weighed about 108 pounds and came home from chemo feeling like a train just ran over me?  Who cared that my brain felt like it was melting out of my ears and that I was an emotional wreck?  Who cared that I actually felt like I could die at any given moment?  Certainly not my boyfriend or his family.

Shortly before Thanksgiving last year boyfriends sister and family finally left us.  It wasn't their decision, it all came down because the alcoholism could no longer be swept under the rug.  Everyone's nerves were finally tested to their limits.  I was overjoyed that I could finally get some peace and quiet and that I didn't have to hide myself or my food from anyone.  I was elated that I could finally feel at home in my home and that I wasn't exiled to the attic anymore.  I was excited that boyfriend and I could get to work on mending those connections that were severed due to family drama.  I left for Seattle so that bf's family could pack in peace and so that bf could spend a little more "quality" time with them without me around.  It took a week for them to be gone.  I waited anxiously to return to a quiet home, I was so looking forward to having bf all to myself.  I wasn't really prepared for what happened upon my arrival.

I came walking through the door to find bf in his usual spot parked on the sofa watching sports (any sport would do) and playing solitaire on his computer.  This didn't surprise me at all as this was the norm in our house.  I expected that he would be excited to see me and excited that we had our home back, drama free.  He would barely even look at me.  I knew something was wrong so I approached him and asked point blank what it was.  This is when he told me that he blamed me for everything that went wrong with his sister and their family.  He told me that I was the one who was unreasonable and that I handled the entire situation badly.  He didn't know if he could be with someone who treated his family in the way I did.  Apparently I was supposed to be ok with being exiled to the attic where I couldn't even stand up.  Apparently I was supposed to be alright with not even feeling comfortable in my own home, not being able to cook meals without a 2 year old "helping" me, ok with the mounting pile of water and utility bills.  I was apparently supposed to be ok with having an alcoholic living under my roof (quite ironic really considering I have liver cancer).  Apparently I was supposed to just let it slide and accept that I had to live with all of this while fighting for my life, and while approaching 2 years of chemotherapy.  He was mad at me, very mad.  My illusion of things returning to normal around the house was shattered.   I had been thinking about moving out of the house for a while (ever since sister showed up) and this new situation only hastened that process.  I called my mom for advice.  She knew everything that had been happening.  We made plans.  She came down to Portland, forgoing our family tradition of Thanksgiving at my gramma's house in Olympia.  We spent Thanksgiving packing and moving most of my belongings into a storage unit in Portland.  I had no where to live but I knew I needed to get out of the house and out of the current situation.  How can someone heal when there is nothing but negativity, animosity, anger, resentment, and bad energy surrounding them at all times?  My mom came to Portland nearly every week to help me deal with my situation.  By December 10th I was out of bf's home.  I had no where to go at the time and felt so alone that I did not even ask any of my friends if I could stay with them.  I didn't want to subject them to my drama, nor did I expect anyone to have to put up with my aging kitty who doesn't like to use her litter box anymore in her old age.  What did I do?  My mom bought me the Christmas present of a week in a nearby hotel.  I couldn't leave for Seattle right away as I had a lot of doctors appointments for both my cat and myself coming up, so I had to stay in town.  I spent 7 nights at a cheap motel, but at least I was alone and not having to deal with drama.  My things were scattered between a storage unit, my aunts house in WA, and at bf's house.  I had my cat and a couple of duffel bags of clothes.  It was at this time I decided to stop my chemo treatments.  I literally felt like they were killing me.  Every time I got chemo I could literally feel my brain cells popping in my head.  My eyes hurt from the toxic fumes off gassing from my body.  I could smell the chemo, I could taste it, I could feel it eating away at my body.  I was a complete an utter mess from the inside out.  I was so deflated and felt so abandoned and alone.  When all of the appointments were over I packed up the car with duffles, kitty, and kitty supplies and made the drive to Seattle not knowing what was going to happen next.  I notified bf (we were still trying to make things work at this point) that we would not be spending Christmas together and spent the next couple of weeks sleeping on my mom's sofa in her apartment in Seattle.  During that time I was notified that an apartment in government housing came up for me.  The day after Christmas my mom and aunt helped me pack up and gather some of my things from storage and we moved me into a tiny (325sq/ft) studio in the most disgusting building I had ever seen.  The day was a giant blur.  Drive 3 hours from Seattle with a diabetic, aging cat.  We crammed some of my belongings into the tiny space.  I said goodbye to my mom and aunt as they both had to work the next day.  Then I was left alone in my new space.  I got asked if I wanted to buy drugs by one of the tenants and was informed that I could find any drug I wanted at this new home of mine.  I was appalled!  I felt so alone and abandoned.  I quite seriously contemplated throwing myself in front of a bus.  Everything felt like it was it was being ripped apart at the seems and I did not see how in the world I was going to make it.  I really tried to find the bright spot but everything was so dark.  In the prior weeks I kept saying that I needed to get out of my situation at my home and that I just need somewhere, anywhere to live other than that house filled with bad energy.  I got exactly what I asked for.  A place to live, any place.  I guess I needed to be more specific :)

It has been a year now since all of this drama was so ever present and unavoidable in my life.  A lot has happened in the past 365 days.  I had hit the bottom, rock bottom, yet I still felt like the bottom kept falling out from under me.  I decided to try to make my world better.  I started focusing on exactly what I wanted and made notes to the universe telling it exactly what I needed to begin healing in every way.  I focused all of my energy on eating healthy, making juices, and finding a new apartment that was not so scary or dirty.  In two and a half months I found this new place, the place I am in now.  It is so much healthier and better than the last place.  I don't get solicited for drugs, my neighbors are very nice and I have actually made friends in the building.  I have more than one room to occupy and 225 more square feet to do it in.  I even have a little patio.  My cat is feeling much better too.  Shortly before I moved out of bf's house the vet told me that she was having thyroid issues (more medication, more $ out of my pocket).  She was not feeling good at that time at all.  I think it was mostly due to the stress of the living situation.  She has always picked up on my stress.  She runs and hides at the sound of an F-bomb.  She knows when I am not happy.  Even though she has thyroid issues on top of being diabetic, my cat is so much happier now as am I.

It has nearly been an entire year since my last chemo treatment.  In some ways it feels like it was just last week and in some ways it feels like a lifetime ago.  My liver still hurts, not as bad or as often as it did while I was getting chemo so for that I am thankful.  I still have chemo brain and neuropathy, but again, not as bad as it was a year ago.  I have gained weight (and now it is time to stop) and muscle mass, and hair back and that is a good thing.  There is one other thing too.

For the very first time in my entire life I am completely happy to be alone and not in a relationship with a man.  Now I have said this before, halfheartedly, trying to pump myself up after getting out of a bad relationship with someone, trying to tell myself that I did not want to be in a relationship and that I was taking time for myself.  I am sure we have all been there at some point.  Trying to spend our time on ourselves rather than on a failing relationship.  But this is actually the first time in my 41 years of life that I truly mean it.  I am so glad that I don't need to tiptoe around someone.  I am so glad that I don't have to feel like I am constantly doing something wrong or wonder why someone is mad at me.  I don't have to sit and pretend that I enjoy watching sports just to spend some time with someone even though they are just ignoring me anyway and playing solitaire on the computer.  I am so glad that my evenings out to dinner don't require that I go to a bar and eat horrible bar food while sitting there watching my significant other get wasted.  I am so glad that I have a clean, healthy, drug free, bed bug free, quiet, cigarette smokeless, drama free roof over my head.  I am so thankful to all of my friends and family who helped me get to this point as it has not been an easy path.  I am incredibly thankful that my cancer has not grown as of the last scan I had and hopeful that January's scan will show the same results.  I am thankful that I am comfortable enough with myself and that I love myself enough to take care of me, that I was strong enough to be able to remove myself from a relationship that at first I thought was the best ever, but only ended up being one of the worst ever.  I am thankful that even though my last relationship was riddled with problems and dotted with disappointments that I can still find the lesson in it and not carry the negativity around with me letting it cloud my expectations or desires of the next one in my life.  I am so incredibly thankful that I find enough value in myself to love myself, be good to myself, treat my body and my soul right and not to blame myself for what is not "right" in my life but to  focus on all that is right with the world.  I am thankful to be able to share my experience with others and to be able to help in any small way I can.  I am thankful to be alive and still functioning even after such a grim prognosis no so long ago.  I am so happy to have my father living closer to me and that my relationships with my mom and dad are so much better, with more feelings, forgiveness, understanding and love than they have ever been before (thanks cancer).  I am also very thankful that the same can be said about my friendships too.  I love all of my friends so much.  I am thankful that my first reaction is love and not anger and that I am holding no resentment inside towards anyone anymore.

There is so much to be thankful for, so much, including all of you out there reading this.  As this year comes to a close and the new one begins let us all find it in our hearts to love ourselves and feel good about who we are.  Once we find it within to love ourselves we are able to love others without limit.  We will begin treating each other with more respect and grace, we will not have room in our hearts for hatred for it will be filled with joy and gratitude instead.  Our world will reflect our attitudes and we will attract more love into our lives and who could argue with that.

It is amazing the difference one year can make.

I'm not complaining. Ok, maybe a little bit.

Oh where to start...

Fall Colors on the Angel's Rest Trail

I have been keeping some things to myself lately, mostly because I wasn't really sure how I felt about them, and partly because I really don't want to complain.  I mean really, what do I have to complain about?  I am alive.  I am much healthier than I was no so long ago.  I don't have to get chemotherapy every other week.  I can think much clearer than at the beginning of the year.  I don't have the gigantic emotional tsunamis washing over me every time I turn around.  I am in a much better living situation in a clean, subsidized apartment with nice neighbors.  I finally have gotten rid of all of the drama in my life from a very unhealthy relationship and that feels really good.  I have been realistic in my expectations of how long it will take to get over chemotherapy side effects by not expecting to automatically rebound back into full blown life yet by setting achievable goals and realistic expectations of myself and knowing my physical, mental and emotional boundaries.  It has been feeling great to volunteer and give back to the world without having to commit to 8 hours a day, 40 hours a week, something I know would simply not be feasible at this point.  I have been spending a lot of time with my family and my friends which feels wonderful.  I have also been spending time on me, detoxing with baths, juice, dry brushing, rebounding, eating well, avoiding chemicals, processed foods and other toxins, hiking, climbing, and other forms of exercise, trying to get my RBC, WBC, platelets, neutrophils and other blood counts back into the normal range.  It all sounds pretty good huh?  So what's bothering me?  I think I may have some of it figured out.  I also think I need to make an appointment with a professional therapist or survivor group just to get this verbally out into the universe and to get some non-biased feedback from someone who does not know me.

I was perusing some sites today, trying to pinpoint exactly what has been bugging me.  It is actually not one single thing I discovered, but a multitude of things stemming from one cause.
Drumroll please......CANCER

A fitting metaphor

I have been feeling somewhat depressed for a while now.  Ok, before you get the impression that I am ready to toss myself in front of a bus let me explain.  When I was diagnosed I was in shock at first, not wanting to even tell anyone because I didn't want to be handled with kid gloves.  A very short while later I decided that I was going to rally and tell the world, bring it to everyones attention that this young, active, healthy individual was just diagnosed with an extensive terminal illness.  I wanted to share my research on how to be even healthier with everyone so that they might not have to ever get the "you've got cancer" speech from their doctor.  I rallied hard.  I went through nearly 2 years of chemotherapy, all the while getting nutritional IV's to counter as many of the nasty side effects of chemo that I could.  I changed my diet, my lifestyle, took control of my health, saw a doctor on a weekly (sometimes more) schedule and did everything that I could to be proactive with regards to my health and wellbeing.  I had a huge network of friends and family to give me encouragement and support.  Nearly a year ago I decided against my oncologists advisement to stop my chemo treatments.  They were just becoming too much for me to handle and I felt like I was really coming apart physically, mentally, emotionally and in every way.  I literally felt like they were killing me and everyone else noticed too.  Since quitting chemo I have been slowly pulling all the little pieces back into place, leaving the ones out that no longer serve me and substituting better ones.  I have gone from seeing my oncologist every month, to every other month, to once in 4 months, and now I am at the point of getting another scan in January to check out what is going on inside of me.  This feels very unusual.  I was tossed into a tornado of doctors, scans, IV's, port placement surgery, biopsies, mammograms, blood draws, medical bills, nurses, oncologists, financial counselors, medicaid, naturopaths, and somehow I was still keeping up in grad school, putting dinner on the table every night, doing all of the grocery shopping, cleaning the house, driving myself to my chemotherapy/naturopath appointments, keeping track of all of my records, and all the rest of life.  Now I go see my oncologist...I'm in there for about 5 minutes trying to tell him all kinds of stuff (why does my liver hurt more now? why do I itch like crazy when my skin isn't dry? why don't I  have my female cycle anymore?  why do I have absolutely no sex drive what so ever? why am I so tired all of the time? why am I so sensitive to noise or smells? when do we do more liver enzyme tests?).  As you can see I most likely drive him crazy.  He doesn't have these answers, no one really does.  I feel like the whirlwind of treatment and hustling to beat down the tumors is over and that I am left with debris everywhere to pick up and piece back together again.

I have been asked by some "Hey, you aren't getting treatment anymore so that means you can re-enter the work force again, right?"
How about if I were to ask this, "Hey, the tornado is gone and your house is leveled to the ground so you are going to move back in though, right?"

It isn't that easy.  I wish it were.  But if everything were just that easy then it wouldn't be worth fighting for would it?

It is pretty awakening to find out just how close death can be.  Once you are told that you could die soon you realize just how much of an emotional burden this is to carry around with you.  Believe me I think about it every single day and appreciate just how fragile life is.  It is traumatic! Adjusting to that at first was all about fighting for my life.  I have put many days into this fight and am now emerging from the wreckage with most of myself still intact sorting through it all, piecing things back together little by little, slowly but surely getting there bit by bit.  The emotional roller coaster doesn't have as many loops, twists and turns as it once did but it is still a ride.

Fatigue has been a common companion for years now.  The fatigue brought on by chemo was debilitating but I powered through a lot of it by refusing to let it limit my life to my bed or sofa.  I still went skiing, hiking, climbing and did the things I loved.  My attitude was that if I might die it will be in the woods doing something I love and not in a bed hooked up to an IV.  This is also what kept things real for me.  Being outside has always been my favorite form of meditation, soul searching and head clearing.  Now fatigue still haunts me but in a different way.  Not so much in the way that I am physically slammed and glued to my bed or sofa although that happens about once a week still too.  More so in the way that comes and goes unexpectedly.  There are sometimes days on end where I am feeling pretty good overall and one day I hit the wall and am slumbering all day long with not even enough energy to cook a meal (can you say smoothie).  Some days I feel good, the next day bad.  There are days when I feel good for half the day and crappy for the other half.  It is really a mixed bag. You never know what is going to happen.  I have been learning to just cope with it and not to feel bad if I didn't get to whatever it was I had planned to do that day.

The simple pleasures in life

To look at me one would most likely never know that I even have had cancer (it's still there but last I heard it was still dead so I am sticking with HAD).  This makes for some very unusual and sometimes awkward situations.  The other day I was volunteering at an event and all of the sudden I had excruciating pain in my liver that took my breath away and stopped me in my tracks.  I just stood there clutching my side not knowing what to do or what it meant.  Luckily it passed and I didn't have to make an excuse to leave the event.  Just because I look "normal" doesn't mean that I feel normal or that everything is normal.  Just because I am not getting toxic chemotherapy does not mean that I am now cured or that I am feeling awesome or that everything just can happily go back to the way things were pre-cancer.  If anything I am more on my own than I have ever been.  I am not taking pharmaceuticals so that means I don't go see a doctor who wants to monitor anything anymore, meaning that I have to be receptive and responsive to my own body and what it is telling me about my state of health.  It means I have to be extra vigilant about my diet, exposure to toxins, exercise, sleep and over all health.  It means I need to listen to my body when it tells me it is at its limits instead of sucking it up and pushing through anyway.  It means that I have to be on top of my natural care and keep getting nutritional IV's (I can't get high dose vitamin C IV's anymore which are known to kill cancer, as they are just too expensive), taking my supplements, and doing everything I can in order to avoid ever having to be faced with making a decision about chemotherapy again.  To hear me talk you would not think that I am struggling with money, or pain, or health, or neuropathy.  I don't usually talk about those things unless I am prodded some.  When someone asks me how I am doing/feeling I will say that "I feel great" or that "I am doing really good" and that is not a lie.  I am.  I feel much better than I did 1 or 2 years ago, and I am alive and still in good spirits, able to love and laugh and see the beauty in every single day.  So overall, what do I really have to complain about?  Let's see: fatigue, lack of mental clarity/focus, chronic pain, neuropathy, financial stress (still living on $7/day), worry about the future/cancer recurrence/secondary cancers, lack of concentration, paying for treatments not covered by insurance, people thinking things are great and back to normal now that chemotherapy is over, how to move on to a new normal when you don't even know what normal is or if you even want "normal" anymore anyway...what if "normal" is what contributed to getting cancer in the first place?

I am giving myself a present.  I am giving myself time to fight my cancer and time to heal from it.  I am so happy to be able to give thanks for all of the things in my life that are so good and right and healthy and loving instead of only seeing what is wrong or what I am missing because of my situation.  I am choosing to focus on everything good and put my attention and energy there so that I get good in return.  The very day I was diagnosed I remember sitting in my back yard watching the trees and birds and thinking to myself "I may never see this again" and then instantly thinking to myself "NO! I will never see this again because this is one moment in my life and it has no equal."  This is when I changed my thought process from what I might not get to have/do to focusing on everything that I do have and can do.  This is another reason why it was so hard for me to write this post today.  It is why I have been kind of quiet on my blog for a while.  I really feel like I have no right to complain about anything, even though life is still quite the struggle.  I am not one to complain, especially since my perspective has been changed so drastically.  Today I had to get it out.  It felt like the thing to do.

In the meantime I am continuing to volunteer at various places, getting my feet wet again so to speak so I am prepared for a full time job when I have the opportunity and ability.  I am looking forward to ski season and getting to use my awesome birthday/early Christmas present from my mom and dad of a midweek pass to my favorite local mountain.  I get out and hike as much as I can when I can (even in the rain) when I feel good, fresh air is medicine for my soul.  I don't leave my house much except to occasionally meet a friend for tea or to see family as every time I leave my house it costs money (either money for gas to get there or money for wherever you go) and living on $7 a day will quickly teach you how to become self entertaining and resourceful and that staying home is often the best entertainment.  I continue to make mobiles to help pay for medical expenses at my naturopath and for a little extra gas money so if you want one please let me know.  They make great Christmas presents (hint, hint) :)

Here is a great article about cancer survivorship and issues cancer survivors face.  Many of these really hit a chord in me.  It felt good to find a sort of validation for the many feelings I have been having both emotionally and physically.  You may find some enlightenment in it as well.

I have also been thinking a lot about self love lately.  Doesn't it make sense that if we loved ourselves more, we would make better choices about our health/food/life etc, be nicer and more loving toward other people and animals and to our environment, ultimately leading to a shift in consciousness that could radiate out and become a revolution?

Bassackwards! Something has to change!

I woke up in a foul mood this morning.

I feel like my body has been trying to fight off some sort of crud (other than the "normal" detoxing dead tumor material from my liver crud) lately.  On Sunday and Monday I slept for 31 out of 48 hours...mostly on the sofa.  I can't sleep on my bed it seems.  Years ago when I was in crippling pain from two bulging discs in my lower back I purchased one of those memory foam mattresses.  At the time it was great for my back.  Ever since I got chemo it has been my nemesis.  It is waaay to hot.  I can never get comfortable, can't seem to sleep for more than an hour or two at best without flopping around like a fish out of water.  So I get up and head back to the sofa to try to get some precious sleep.  Sleep is our bodies chance to recover and heal.  My liver has been hurting a lot lately.  I am assuming it is because I just can't sleep.  If I'm not sleeping then my body never has a chance to repair the damage done by the cancer and the chemotherapy.  Maybe that is why my liver hurts a little more and more each day and I know for certain that is why I woke up in a foul mood today.  It is irritating to not be able to do the most basic of functions like sleep.  When I was getting chemo I couldn't sleep because I had horrible hot flashes.  I would go to bed freezing (mostly because my boyfriend at the time was too cheap to turn the heat in the drafty, moist house up past 62 degrees) wake up slimy and covered in sweat and feeling like I wanted to crawl out of my skin only to start freezing all over again.  Pulling wet sheets over a wet, sweaty body is not fun.  This would go on in a cyclic manner throughout the night about every two hours or so.  It was certainly no fun.

I take LDN (low dose naltrexone) prescribed by my naturopath as a preventative cancer measure.  LDN has been proven in studies to help boost the immune system and kill cancer throughout the body. It has no real horrible side effects like chemotherapy but it does come with the possible side effect of sleeplessness and vivid freaky dreams or nightmares.  Both of those side effects are what I experience every time I lay down to sleep.  Toss the combination of the uber hot mattress into the mix and you end up with one very unhappy camper.

My prayer quilt

Last night was no different.  I was looking forward to sleeping, especially since I have been seemingly so good at it the past few days.  But the sandman did not pay me a visit last night.  I fell asleep in front of the tv last night on the sofa.  Woke up at 2am and promptly went to bed (after popping my LDN of course).  About half an hour later I was tossing and turning.  I pushed my pillow off to the side and slept without one.  I turned over and over trying to find the spot where I would be comfortable enough to fall asleep.  At 3:30 I decided to get up and try the sofa...after laying there for about half an hour I finally found sleep.  Horrray! Then an hour later I woke up to my cat puking then walking over me trying to tell me that it was time for breakfast (only a few hours early).  I got irritated and decided to head back to the bedroom.  Nice try! As I picked up my favorite quilt (made by one of my grad school friends just for me when I was first diagnosed) I felt a wet spot on my hand.  Yay! My cat decided to poop on me while I was sleeping.  So here I am at 4am cleaning poop off of my hand and off of my favorite quilt all the while being irritated that I can't sleep and perturbed that my cat decided to have a bowel movement on me while I was getting what little sleep I could find.  Not a good start to the day.

My liver has been hurting more and more lately. It pretty much always hurts some but lately it has been very noticeable.  My last visit to the oncologist was back in July.  It was pretty ordinary.  Lay back on the paper covered exam table, he feels my liver for about 5 seconds then says "You're doing great, come back in 4 months".  This is a typical visit.  So my next appointment is the day before my birthday (October 16th, my b-day is the 17th).  At first I though it was unusual to go one month in between appointments, especially after seeing him every other week.  Then it became two months as my scans started looking better and better.  Now it is 4 months.  It makes me worry.  I worry because my liver hurts (is it the cancer coming back, or is it just that there was so much cancer in my liver that it is still detoxing and that is why it hurts?).  I worry because I don't want to get chemotherapy again, it was horrible!  A facebook friend (who also has CC and got the same chemo treatments as I did) asked me the other day what I would do if the cancer came back.  Would I get chemo again or would I seek the natural route.  I immediately said that I would seek natural treatment as I recalled all of the side effects of the toxic cocktails that would course through my veins.  This morning as I woke up to my liver hurting and as I tried to feel my liver the way my oncologist does during exams checking for any hard places or painful lumps I thought a horrifying thought.  What if my cancer IS back?  Yes, I would want to seek natural treatment but in all honesty I simply wouldn't be able to do that financially.  Our lovely insurance system will cover all kinds of toxic poisons like chemo and other pharmaceuticals but it wont even cover a portion of any sort of natural therapy like high dose vitamin C therapy which is clinically and scientifically proven to kill cancers of all kinds.  So where would that leave me?  I certainly don't have the money to pay for vitamin C therapy at $160-$180 per treatment once or twice a week.  Chemotherapy costs thousands of dollars each treatment but insurance covers that...so as you can see this puts me in a bind.  Don't you think it is lame and bassackwards that insurance will cover toxic poison at thousands of dollars for every visit but wont cover a natural therapy that is a fraction of the price and has less side effects and is proven to kill cancer whereas chemotherapy is NOT a cure whatsoever and quite likely only leads to further complications and other secondary cancers?  Where is the logic here?  This logic is only designated to line the pockets of the already rich pharmaceutical companies which also have their ties deep in our political system, food system and water supply.  They want us to be sick so that they can "treat" us.  They don't want to cure us.  Doctors are not in the business of curing cancer they are in the business of treating cancer, treating symptoms, giving us pills and radiation and chemotherapy because every time they use a product from big pharma they get a little richer and a pat on the back for prescribing the latest toxic treatment.  Pretty messed up if you ask me.  Now don't get me wrong, I don't think that the doctors out there are intentionally trying to kill us.  It is not their fault that they were told and educated that the way of pharmaceuticals was the only proven way to treat cancer.  My oncologist poo-pooed all of my natural therapies.  His argument was always the same, "It hasn't been scientifically proven in clinical studies" he would always say, but luckily for me he also told me to "do whatever makes you feel good as long as it doesn't interfere with what I'm doing".  What he didn't know was that the things I was doing was discouraged in the conventional medical world and thought to interfere with chemotherapy.  I did it anyway (like take mega doses of antioxidants before and during chemo) and 17 months after a grim terminal diagnosis I had somehow killed the cancer that covered my entire liver.  How's that for scientific proof?  Can you tell I'm in a bad mood this morning?

Just about anything beats chemotherapy!

I don't like to think about "what if".  I don't want to worry about my cancer coming back or why my liver hurts...I don't want to give it too much of my energy or thoughts because I don't want to manifest it into being.  It is hard not to worry though when I feel like there is a softball under my ribs.  It's hard not to worry about what I would do if the cancer did come back.  My choices would be very limited.  Limited because our medical system is so screwed up that I would not be able to afford proven natural treatments with no side effects and more success rates than the toxic cocktails of big pharma that debilitate you and turn you into a 90lb, hairless, moody, chemo-brained, zombie that looses her stomach every couple of hours.

Something has to change.  In the meantime I'm thinking about moving my oncologist appointment up a few weeks.  But then again what would that accomplish?  Most likely not much. I think it is time for a hot bath, a warm cup of lemon water and some positive visualization.  I think it is time to focus on good things and heed my own advice...What you focus on expands.

Pobody's Nerfect!

As I sit drinking my morning cup of green juice made with cucumbers, spinach, celery, carrots, ginger, half an apple, parsley, and a lemon (with most of the peel removed) I am reminded about how much I forget or neglect some things in my life.

Today's post is dedicated to all of us who procrastinate, forget, or are sometimes just too lazy to do certain things.  I am certainly guilty of all of these things.  Procrastination, lets see...I think I am pretty darn good at that.  Sometimes I am on it, but other times I put things off until the very last minute.  Forgetfulness, well lets just say that chemo took care of the short term memory and that there are still moments, entire days actually, lost from my memory as a result of chemotherapy.  And laziness, ah yes, my old pal.  I have never been a lazy person.  Even while on chemotherapy I still got off my butt and got outside and played in the wilderness, rock climbing, hiking, skiing or just sitting somewhere beautiful.  Sometimes, often actually, I get dead tired (again I am attributing this to the chemo and my body healing itself and detoxing the dead tumor matter from my liver) and I sit and do absolutely nothing at all, unless it is to sleep and nap on the sofa all day long.  I forget to take my supplements (or is that laziness, OR is it because I want to stretch them as far as possible because they are expensive) and I often go far too long before I eat anything (the appetite is still in need of improvement), and I know that is not good for a healing body.

Sweet potato chips that went wrong.
Now they are treats for my friends pup :)

What I am trying to get at here is that nobody is perfect.  Why would anyone want to be? What fun would there be in life if we did not learn lessons from our past?  Even though I know that I should be doing certain things, I sometimes don't do them.  Why? I don't even begin to know the answer to that one.  But the most important take away message from this is that even though the going gets rough sometimes and you momentarily forget, procrastinate or get lazy you get back on that horse and ride it right into the setting sun.  Everyone of us (no matter how "perfect" they may seem to others) has our moments of stumbling and stagnation.  It is important though to remember that we need to be honest with ourselves and recognize when our "less-perfect" side is taking over our world and our health.  At this point we can either give into it and let it control our lives or we can recognize it and accept that we can't always be perfect and try again.  Don't let it get you down if you ate an entire box of donut holes last night.  Learn from it and listen to your body.  Really get in tune with how that made you feel.  Maybe it made you feel happy and satisfied at the time but the next morning were you suffering (bloated, gassy and irregular) or did you notice that you slept badly during the night or had weird dreams or even nightmares?  This is your body telling you that you gave it something that it did not need or want.  There is always time to change your habits.  There are always improvements to be made.  Just don't dwell too long on all of the things you want to improve upon so much that it gets you down and contributes to more negative behavior.  We all stumble a bit and that is the way we learn.  We cannot have light without the dark.

Hey! Pobody's Nerfect!

My Cancer Killing Diet & Lifestyle

I have had a lot of emails about what I did for myself (other than chemo and pharmaceuticals) to kill my cancer.  In lieu of repeating myself over and over again I thought I would try my best to go over everything here.  As always, if you have any more questions please do not hesitate to send me an email asking about them.  I may not always be quick to respond but I promise I will get back to you.

THE EARLY STAGES (right after diagnosis):

 My ex bought me a copy of Kris Carr's "Crazy Sexy Cancer" and I devoured it.  I didn't take every single suggestion in the book and run with it, rather I picked through and found the ones that made the most sense for my condition, my body, my own unique person.  The day after I was diagnosed I ate my last favorite meal; a medium rare steak, baked potato, salad, and a glass of red wine and of course for dessert I had some ice cream.  The very next day everything changed.  I didn't ease into my new diet, I actually sped full steam ahead into it, no holds barred, no looking back, no if's and's or but's about it.  It was definitely crunch time for me.  I felt, literally, like it was do or die and I didn't want to die.  Yes, I thought about all the food I couldn't eat and salivated over watching others eat the things I used to eat all the while being bummed out that now I was different and one of those picky eaters who can't just order from the menu and asks questions like "Are those veggies sauteed in butter or olive oil?" and "is there any milk substitutes available?" etc.  

It wasn't even an entire week after my diagnosis when I eliminated the following foods from my diet:

Dairy (with the exception of cottage cheese and flax oil as per the Budwig protocol)

Animal products (with the exception of a little fish once a week or less)

Sugar (cancer feeds on sugar)

Alcohol (um...LIVER cancer)

Processed foods (anything that is in a package is pretty much a processed food)

Caffeine ( I drank hot lemon water in the mornings and then found an awesome product called Shakti Chai that my naturopath turned me onto because I was craving my tea like beverage)

Basically if I couldn't pronounce or recognize an ingredient on anything I purchased that was packaged I did not buy it.  It literally took me hours to shop.  I read every ingredient on every label and 9 times out of 10 ended up putting it back on the shelf.  Even the bulk food, those ingredients are posted on the bins, please take time to read them.  Don't just assume that because it says "organic" or "non-GMO" or "all natural" that is is good for you.

Most of my groceries were from the produce section and I always purchased organic food.  If I couldn't find the thing I was looking for in the organic section I either went without that certain item or found it at a different store.  While I am on the topic of stores let me just say that it is almost impossible to find healthy options that are not full of sugar, chemicals or other nasties in most conventional grocery store chains.  If you have a Whole Foods, Wild Oats, Trader Joe's (although even the Joe isn't that great either but they are getting better), co-op, or other alternative type market I would go there first.  UNLESS you have access to a farmers market that sells organic, pesticide free produce.  It is always best to buy locally grown foods, not only does it stimulate the local economy and support local agriculture but it also means that you are getting seasonal food. Eating local, seasonally grown foods means you are getting the most nutrients from them as they lose their nutrition little by little after harvest. You aren't getting a winter squash in the middle of the summertime or a cucumber in the winter etc.  You get what has been harvested recently, still full of nutrients, grown locally instead of shipped around the world, and supporting your local farmer.  Better yet, join a CSA (community supported agriculture) and get a box of fresh seasonal produce delivered right to your door! Here is a link to find farmers markets in your area...and HERE is a link to find a local CSA.

At first I ate most all grains including rice, wheat, oats, quinoa, etc.  They made good fillers for my tummy even when I had no appetite.  I would usually accompany them with veggies and EVOO (extra virgin olive oil).  I purchased a masticating juicer (good for juicing veggies and wheatgrass) and I made green juices every day. This is the juicer I have (Sampson 6-in-1) but I have also heard great things about Breville and Omega juicers too, and if your budget can afford it the Norwalk juicer is the way to go.

I also made smoothies ( I purchased a Vitamix when I still had a savings account) almost every day adding protein powder, green vital nutrient powder, chia seeds, flax seed oil, all kinds of fruit and a hand full of spinach or kale.  Even when I didn't want to eat or when I didn't even have an appetite those smoothies saved me and kept me from losing tremendous amounts of weight.  Again, when purchasing protein powder to go in your smoothie remember to get the organic non-GMO stuff, many are also vegan or vegetarian to suit your taste and/or needs and preferences. 

LATER DURING CHEMO (when I was losing too much weight):

I began incorporating more animal products into my diet, mostly for the fat.  I ate cheese again, yogurt, kefir, and meat.  I also started eating ice cream (probably not the best idea but, hey, I needed to gain weight badly).  I pretty much ate what ever I wanted at this point as I had gone from 141lbs down to 109lbs and looked very sickly.  I still avoided all processed foods and ate mostly vegetables but at this point I really had no other limits.  In retrospect if I had eaten more foods from the beginning instead of letting my dwindling appetite get the best of me I probably wouldn't have had to try to gain so much weight back.  

THROUGHOUT TREATMENT AND NOW:

I always buy organic food.  Always.  I try to eat alkaline foods (great link here to food chart) and here is another great one (cancer loves and acidic body and processed foods and meat is very acidic) so it makes sense to try to alkalinize the body.

I have not had a drink since that last glass of red wine.  I might have the tiniest sip of beer once in a great while just to taste one I hadn't tasted before but that is it.  Having liver cancer is pretty much the only motivation I need to not drink alcohol ever again.  It has been almost 2.5 years since that last glass of wine.  Not only do I save a bunch of money from not buying alcohol, but I save my compromised liver and my waistline too.  BONUS!  More money for veggies!

I have always taken supplements as suggested by my naturopath at The Center for Traditional Medicine in Lake Oswego, Oregon and highly recommend seeking professional advice from a naturopath or natural medicine doctor before beginning any supplements.  You can find my supplement list during treatment and the supplement list I am on now on my previous post here.  I also got nutritional IV's during the 2 years of chemo treatments.  I would get those on the weeks I wasn't getting chemo.  Those kept my body healthy enough to be able to tolerate nearly 50 rounds of cisplatin/gemzar.

I know that a radical diet change is extremely daunting and scary.  Comfort foods are gone! Where is the replacement for cheese?! What about my morning coffee, evening wine, or midnight ice cream craving?  Well, all that I really have to say about that is how badly do you want to live? Does your desire for food outweigh your motivation to be alive?  Most likely not.  I changed my diet in the blink of an eye.  It wasn't easy, it was damn hard! I did countless hours, days, weeks, and months of research to find what worked the best for me.  I am not you, our bodies are not the same.  Yes they have pretty much the same parts but those parts are all different.  Our metabolism is different, our blood is different, our lives are different.  What worked wonders for me may not be a good fit for you.  My best advice is to experiment and take the time to check in with your body to see if what you are doing is helping or hurting.  Getting in touch with your body is so important.  It is also something that is so hard to do when given a cancer diagnosis, especially a terminal diagnosis of a rare cancer that almost everyone dies from.  You distance yourself from your physical body, you have to just to be able to endure treatments.  My body became something that "they" did "things" to.  It was like I was outside of my body most of the time looking down watching them do things to me.  When I lost more and more weight I distanced myself even more from my physical being.  It was only after I voluntarily stopped chemo that I began bringing myself back into my body again.  I still don't think I am all the way there yet but I am more present now than when I was in a chemo induced haze.  

I want to say a bit about attitude.  I know that just having a positive attitude isn't going to get rid of your cancer or solve all of your problems BUT I also firmly believe that what you focus on expands and that your thoughts and feelings and words can and will manifest into reality.  Don't get me wrong, there were plenty of days, or even weeks where I threw my own private pity party and I didn't invite anyone else.  There were those days that I thought to myself that it would be much easier to just give up than to continue on.  There were even a couple of days that I would have rather just been dead, but those were my low points, really low points.  Other things than just the cancer contributed to this (dysfunctional relationship, crazy alcoholic ex-boyfriend relatives living with us in a house that was too small mooching off of us, cheating, lying, and being told by the person I loved that I had lost too much weight and was no longer attractive, etc.) and feeling like I was all completely alone and that no one really understood how I felt, not even me.  I feel it is important to give in every once in a while and throw your own pity party.  Cry, scream, punch pillows (or other soft things), play loud music, whatever it takes, BUT then move on.  Keeping all of those negative feelings and emotions bottled up inside is not healthy for you or the person who is unlucky enough to be in the path of your rage when you do snap.  So let it out, and let go of it.  Then as Peter Tosh says "Pick yourself up, dust yourself off and start all over again." Having a positive attitude is a good thing.  You must feel good about your choices otherwise you wont stick with them.  Before I made the decision to get chemotherapy I had to make sure I felt good about it first.  Any chemo is scary stuff.  I didn't want to have to get chemo just because they told me to.  I wanted to make sure that I felt good about it and wanted to get chemo so that I could imagine frying those little cancer cells as the poison coursed through my body.  If you are going to chemo with the attitude that it isn't going to help then it probably wont.  Worrying about something is like praying for what you don't want.  Try to focus on all of the things you do still have left instead of worrying about what may happen or what you have lost.  It is not always easy, but I am certain that you can find at least one good thing every single day to be happy about, even if you have a terminal illness.

Right from the very first moment I heard the doctor say "you have cancer" I immediately decided that I was going to kick its ass.  The very next thing out of my mouth after I heard those words was "tell me everything, I need to know as much as possible to be able to do as much as possible to kill it".  I have said this many times and I am going to say it again because it is just that important!  When you life is spiraling out of control and you are given a diagnosis of cancer and all the statistics say you only have a 2% chance of living 5 years it is time to take your control back.  In this place where you feel like your life is so out of control it is so empowering to be able to control something.  I took control of my diet, eliminated every single chemical from my home (laundry soap, bathroom cleaners, shampoo, soap, makeup, hair products, household cleaners, everything!).  I drank filtered water (and if I could have afforded it I would have gotten a filter for my entire home).  I took hot epsom salt and essential oil baths or cellular detox baths almost daily.  I got acupuncture (great link for cheap acupuncture here), acutonics, massages, reiki, other alternative healing methods, did yoga, used gemstones and crystals, exercised, got sunshine and fresh air, I did what ever made me feel good that wasn't bad for my health.

MY ANTI-CANDIDA DIET:

What is in my fridge right now

All of the chemotherapy, antibiotics from rashes from chemotherapy, years and years of birth control pills and other pharmaceuticals left my digestive system in pretty bad shape.  I was tested for candida at my naturopath (a simple blood test) and the results came back showing that I had a HUGE candida overgrowth problem.  My doc said that he has probably seen worse cases but he couldn't remember when.  Candida is always present in the body, it's not necessarily a bad thing, but when it takes over and grows like crazy it prohibits all of the good gut bacteria from doing its job.  Eating things like sugar and wheat or white rice only exacerbate the growth of the candida making your digestion suffer, thusly making your health suffer.  I have been on an anti-candida diet for months now and I am still not over it yet.  If you think that changing your diet to a more plant based diet is hard then you have no idea how hard it is to eat an anti-candida diet.  It is by far the hardest change I have made.  I have eliminated every grain except amaranth, quinoa, millet and buckwheat.  NO BREAD! lame! I love bread!  No oatmeal in the mornings...booo!  Even all of those "gluten free" mixes and products out there contain either sugar, rice flour, spelt (wheat), or all of them.  Yes you can take antibiotics to get rid of candida, but antibiotics must be followed by a thorough course of probiotics and taking antibiotics to rid your body of something that antibiotics most likely caused in the first place is kind of counterproductive to me.  There is no quick fix for candida, only band aids that mask your symptoms.  The only way to control candida overgrowth is through your diet and after all, isn't that what this entire post has pretty much been about anyway?

PET scan results and other fun stuff

She's radioactive!

On the 12th I had my 4th PET scan.  My oncologist decided to do another PET instead of CT so we could see what has been going on for the past 2 months.  I must say it is a little weird to go from having to see the oncologist weekly, then bi-weekly, then monthly, to bi-monthly...I just can't help but worry about it being that long in between visits, wondering if in that time something might start growing out of control or something.  But instead I choose to focus on the positive, perhaps that is partly what has gotten me this far, who knows?

As usual I always request a copy of the scan on disc that same day (and I sit in the clinic and wait for it) and as soon as I get home I plug it into my computer and scrutinize every little detail hoping not to see those tell tale dark spots in the image as I examine it from every possible angle.  It looked pretty much just like the last scan (THANK GOD!) and I was content to wait until the following week to get my "official" results from my oncologist.

Now if you have ever heard of me describe my oncologist, you will know that he is pretty stoic.  He never really gets excited and never really gets worried, or if he does he never shows it.  However, this time was different.

I sat on the exam table as usual and looked at the scan results with him on the computer.  He said "Things are still looking very good" and then turned to me with a smile on his face (first one I have ever seen) and said "How many people do you know that are in your situation?"  I said "no one" to which he replied, "Exactly! You are an exceptional case!"  You just have no idea how long I have waited to get that excitement from him! It just made my day!

I still have yet to hear those words "you are in remission" and I suspect that is because I still have masses of tumors, although dead, in my liver.  They keep shrinking slowly but surely and I am so thankful for that!

I really picked my oncologists brain that day, making sure to ask him all the questions that I had forgotten to ask before.  I got smart and wrote them on a list this time so chemo brain could't forget.  I told him that I feel like I keep waiting to feel normal again.  Like I can go to work for 8 hours a day, or be able to concentrate on something without losing that concentration or getting so frustrated that I give up.  I'm waiting for the day that I can feel consistent.  One day I am full of energy, and the next I could be on the couch sleeping the entire day.  I may go out to run errands or for a walk and end up so tired and exhausted that I can barely drag myself back to my door.  He admitted to me that unfortunately there is no money to be made in cancer survivorship programs, no drugs that they can sell you, nothing to market so to speak.  He made it very clear that he felt this was an area that definitely needed improvement and where there was a huge lack of resources.  He said the best thing for me to do was to have a great support group (family and friends etc) to help me out.  I have that.  It's YOU! But all the emotional and/or financial support in the world is not going to help me shake those nasty chemo side effects.  It will just take time, good nutrition, exercise, rest and a positive attitude.  Who knows, those side effects may never go away.

Just a girl and her jackhammer

Sometimes I feel that others think that since my scans are clear and I am not getting chemo right now that everything is all back to normal and life goes on like before.  Well, let me say that this is far from reality.  I am still waiting to get my brain back.  It's getting there, slowly but some progress is better than none at all :)

In the meantime, my mom and I went to southern Oregon to dig for fire opals at the Juniper Ridge Opal mine.  It was spectacular!!! We had so much fun and found so many awesome specimens! What a treat! On the way back we found this awesome little hot springs by the hwy (58) and soaked in its 120 degree water for an hour or so.  It was heaven!

I also got interviewed by our local Fox news station yesterday at The Center for Traditional Medicine about why I get my nutritional and high dose vitamin C IV's.  It was exciting! I don't know when it will air yet but I will keep you all posted.  I don't have tv (can't afford it) so I will have to see if I can get a recording of it or go to a neighbors or friends house to watch it.

some of my loot!

I want to give a HUGE shout out to all of those of you out there who have contacted me about you or your loved ones who have cholangiocarcinoma.  I am so honored to be able to share my story and experience and resources with you.  I want to help you out as much as I can by sharing those resources, so please do not hesitate to get in touch with me.  Sometimes I may be a little slow to respond but I promise I will get back to you.

first time ever river kayaking

Looking for individuals with terminal illness to document their stories

Greetings and health to you all!

I wanted to share this with you all as it seems like a very important opportunity for those diagnosed with a terminal illness to share their experiences, feelings, thoughts, fears, hopes and uncertainties with the world.  Those of us diagnosed with a terminal illness know just how incredibly hard life becomes in an instant.

I was contacted by an international TV production company that is making a documentary film comprised of short 2-3 minute home videos of those who have been diagnosed with a terminal illness.  It sounds very promising to me.  I love the idea of sharing the impact that such a diagnosis has on us with the rest of the world.  I plan to participate.  You can either use your home video camera, computer camera, or a video shot on you phone and submit it.  In other words it doesn't have to be fancy or shot by a pro.  It seems like a great step in the right direction to draw attention to how the diagnosis of a terminal illness affects us, as well as a great educational tool for those who have no idea of what it must be like to be told that you have a short time left on this earth.

Here is the email I got, copied and pasted right into my blog.  Now you have the same information I do.  Please consider sharing this with others who might be interested as well.

International TV production company looking for individuals who have a terminal illness to feature in the presentation tape for a TV documentary.
Unique documentary aims to show the thoughts, feelings, experiences, wishes and aspirations of those who have been diagnosed with a terminal condition - told in their own words...

We asking anyone interested to upload 2 - 3 mins of self-shot casting footage via WeTransfer.com and send to terminalcasting@gmail.com ( using mobile phone / PhotoBooth or small HD camera footage), telling us their unique story.  

Please email sophie at terminalcasting@gmail.com for further details.

Many thanks,

Sophie.

Cholangiocarcinoma 101 & Our Screwed Up Medical System

It has been a while since I have posted about the "basics" of cholangiocarcinoma (lets call it CC for short) and I thought that today would be a good day to review just exactly what CC is all about.

Cholangiocarcinoma (or bile duct cancer) is a cancerous (malignant) growth that originates in one of the ducts that carries bile from your liver to your small intestine.  CC is a relatively rare disease that only one out of every 100,000 people will ever get diagnosed with.  It can occur anywhere along the bile ducts and since the bile ducts are located within the liver it often spreads (matastasizes) into the liver and other organs in the body.  CC can be further categorized into three categories, extrahepatic (or perihilar or hilar), intrahepatic, and distal extrahepatic.  The most common form of CC is extrahepatic or Perihilar/hilar and originate in the hilum, or the place where the hepatic ducts have joined and are leaving the liver.  Another form of CC is distal bile duct cancer which actually forms outside the liver closer to the small intestine and is included in the "extrahepatic" category.  The least common form of CC is "intrahepatic" which develops in the smaller duct branches inside the liver.  Only 1 out of every 10 bile duct cancers are intrahepatic making it the most rare form of cholangiocarcinoma.  Imagine my surprise to find out that I have intrahepatic CC!  Not only do I have a rare disease, but I have the rarest of forms of this rare disease as well, lucky me.

The symptoms of CC can vary depending upon where the tumor is located within in the bile ducts.  If the tumor is hilar the patient usually has symptoms of jaundice, itching, abdominal pain, progressive weakness and weight loss.  If the tumor is distal there is often no abdominal pain but there is jaundice and itching (pruritus).  And finally if the tumor is intrahepatic there is often no jaundice present but there is itching (pruritus), slight to severe abdominal pain, unexplained weight loss, progressive weakness, fatigue and loss of appetite.

Before I was diagnosed with intrahepatic cholangiocarcinoma I had all of these symptoms except for the jaundice.  The back of my head itched like crazy! I remember thinking that "I don't have evidence of dandruff so why does my head itch like hell?"  I used apple cider vinegar every day to try to get the itching to stop but it wasn't working.  I had severe abdominal pain and extremely poor bathroom habits.  My right shoulder hurt all the time ( I found out later that this is where the liver often expresses its pain since there are no nerves to express pain in the liver) and I was losing weight (although at the time I thought this was a good thing).  I definitely lost my appetite, although at the time I didn't attribute that to anything other than I felt crappy whenever I ate (gassy, bloated, nauseous, etc.)  I often vomited in the mornings prior to my diagnosis and it was usually bright yellowish green and slimy (I'm guessing this was bile) and tasted horrible.  I had a HUGE hard mass right in the middle of my abdomen at the place where the ribs meet just below the sternum.  It felt like hard lumpy cottage cheese and protruded out from my abdomen.

The real problem with all of this is that I went to the emergency room at Swedish Hospital in Ballard (a neighborhood in Seattle) with these complaints and severe abdominal pain.  They ordered an ultrasound thinking I had gallstones.  After spending nearly an hour looking at my insides they determined that I was just fine and sent me home with orders to see my primary suggesting that I get yet another (i had already had three) endoscopy.  Knowing that another endoscopy was pointless, and that yet another doctors visit with the same set of problems was going to get me nothing except for more prilosec, I chose to ignore making an appointment with my primary.  Fast forward 3 months...I was in my primary's office for another reason and asked her to feel this giant lump in my abdomen, telling her that it hurt like hell and that it made it hard to breathe (like a knife in my stomach if I took a deep breath).  She felt it, or in medical terms, "palpitated" it and told me these exact words, "I see nothing remarkable, just take this prilosec for a month and let me know if it gets worse."  She was positive it was a hernia even though I explained that I had a lower back injury and that there was no way I could have gotten a hernia because I NEVER lift anything heavy.  This was at the 45th Street Clinic in Seattle.  My suggestion...DON'T GO THERE! or to Swedish either for that matter.

This is the problem with Cholangiocarcinoma, it is hard to diagnose.  Many of the symptoms fall into the "digestive disorder" category, especially if you are unfortunate enough to have the "intrahepatic" kind which doesn't usually present with jaundice (an indicator that something is wrong in the liver).  By the time one is diagnosed with CC it has already done extensive damage to the liver and has grown aggressively.

I'M NOT BUYING IT!

Why?  Because if I can look up these symptoms on the internet and find that "giant lump in abdomen", "itching or pruritus", "abdominal pain", "weakness and fatigue" "vomiting smelly slimy yellow stuff" and "weight loss and appetite loss" are all symptoms of cholangiocarcinoma SHOULDN'T A TRAINED MEDICAL PHYSICIAN KNOW THE DIFFERENCE  between a rare incurable cancer and a hernia!!!???

If this disease is rare and incurable then why aren't doctors trying harder to connect the dots with unexplained symptoms such as those above and CC?  Why?

Why is is that the medical professionals cannot even tell the difference between IBS (irritable bowel syndrome, which is what they said I had for more than 10 years) and Cholangiocarcinoma?!  Is it that they don't care?  Is it because insurance companies are willing to pay for endoscopies and colonoscopies but are not willing to fork over $800 for a CT scan with contrast?  Why do doctors just run the same old tests on you with the same results for years on end, wasting money and time and getting nowhere when they could just LISTEN to what you are telling them and think outside of the box for just one second to help their patients find the cause of their symptoms?

Cholangiocarcinoma is a relatively slow growing cancer in comparison to other cancers out there.  I am certain that all those years I complained about digestive disorders and abdominal pain I had CC growing inside of my liver.  Instead of ever ordering a simple liver panel or CT scan I got more pills, I got told that it "was all in my head", and that I must have a hernia.  I got endoscopies and colonoscopies and countless prescriptions to cover up my symptoms, but never a simple blood test to check my liver functions.

What do I take from all of this?  Let me give you some very important advice my friends.  This advice can quite possibly save your life.

BE AN ADVOCATE FOR YOUR OWN HEALTH


No one knows your body better than you do.  If you feel that something is not right, be persistent and question your doctor if they are not helping you find the reason you feel bad.  If they don't help you FIRE THEM and find another doctor who will help you.  The doctors do not always know what is best for you, some of them don't even care.  You pay good money (and a lot of it) for healthcare and you deserve better than a lame excuse for whatever you feel is wrong and the "brush off" of yet another prescription to mask your symptoms.

Those of us diagnosed with Cholangiocarcinoma know just how screwed up this all is.  Many of us have gone through similar experiences with doctors overlooking our symptoms and writing it off as other disorders.  The survival rate of those with CC isn't entirely uplifting...those diagnosed with extrahepatic CC have a 5 year survival rate twice that of those diagnosed with intrahepatic CC, but even then the rate of survival past 5 years is at best 30%.  Of course this is just all based on statistics.  I am of the opinion that I make my own statistics, just as you make your own statistics.  No one can tell us how long we have on this earth.  My point in bringing up survival rates is that CC is more often than not a certain death sentence.  It just seems to me that with the odds of survival being so slim and the increasing diagnosis of CC in young adults being on the rise, the medical community and society in general should be spending a little more time and attention on this killer of a disease for which there is no cure.  That is just my opinion.

Sites referenced:

http://www.cancer.org/acs/groups/cid/documents/webcontent/003084-pdf.pdf

http://www.hopkins-gi.org/GDL_Disease.aspx?CurrentUDV=31&GDL_Disease_ID=A6D10E80-887D-49A7-B3BB-0517D38CE757&GDL_DC_ID=320F4EDD-0021-4952-83D7-8B0C67B47BFF

Sunshine, rocks, trees, waterfalls, and PET scans

Tub full of carnelian agate

It has been a busy summer so far, but busy in a fun way.  My dad came to visit and we went rock hunting and to the Bagby Hot springs, I got to see his new place in Castlerock.  It's right on the Cowlitz river.  Looks like I am going to get to catch some salmon soon.  He also agreed to let me keep bees there too and I am excited about that!  A few days later my mom came for a visit.  It was a ton of fun.  We headed over to Madras, OR for the All Rockhounds Pow Wow, it was fun to stroll through all of the neat-o stuff.  On the way home my mom treated us to a little bit of gambling at a casino in Warm Springs, OR.  We always go cheap, we split $20 ($10 each) and played the penny slot machines for a few hours.  It was actually a nice distraction from the norm.  We came out with 10.33 still in our pocket.  Not too bad for a couple hours of entertainment.  Mom and I also went rock hounding (looking for carnelian agate) and found so much that we could barely carry it out to the car.  I just love finding agates! It is like getting little special gifts from nature.  It is a rush every time you find one, especially if it is large or has some druzy inside.  We also hiked to Ramona Falls and as usual, it was spectacular.  My mom had a great time enjoying the scenery and checking out the vegetation.
It seems that my summers are like this...busy but in a good way.  I love it! I love seeing my friends and  family and showing them where some of my favorite spots are.

Ramona Falls hike

I was talking to my mom about my diet lately, how I've been avoiding wheat, gluten, sugar etc. and how hard it is in any social situation (even if it is only with one other person) to adhere to this diet.  It seems that you can't walk into any restaurant and avoid the "brown food group" you know the one, colorless, lifeless, processed, and re-processed until it really no longer even resembles natural food anymore.  Now my mom knows how important my diet is to me and that it is largely responsible for the assassination of the cancer in my liver, but she also watches me struggle with eating as well.  To those of us with cancer or other life altering diseases we are acutely aware of how we are not the same person anymore in many aspects.  Food, being the building block of life, is critical to good health.  Food is also synonymous with social gatherings as is alcohol.  It is strange to go to an event (lets say a family bbq or friends birthday party) and watch everyone eating and drinking and you (the one with cancer) are getting side glances from people (or maybe I just think I am) wondering why you don't have a plate of food, some of their potato salad/pasta salad, hamburger, processed veggie/soy burger, hot dog, or strawberry shortcake...and why the hell isn't their a beer in your hand??  No one understands this better than my mom.  She has had to put up with hearing me go on and on about how difficult social gatherings revolving around food and drink are for me.  It sucked that we couldn't go get a giant plate full of yummy pasta, with some crusty bread and a glass of wine.  It also sucked that we couldn't go to Pine Street and have one of the best biscuits on earth for breakfast one day.  Now, don't misunderstand...I am not trying to say that eating pasta or a biscuit is going to kill me or anything that extreme, but if I do stray from my diet and have that indulgence I am paying the price not even 30 minutes later...bloating, gas, stomach hurts, feeling like I swallowed a beach ball, etc.  The next morning is no better, the bloating is still there, looks like I am carrying a child, can't get relief because the back door is locked if you know what I mean...

Ramona Falls

So it boils down to this.  I HATE going out.  I feel that if I cook and prepare my own meals at home, not only is it healthier for me as I can cook what I know is good for me and know exactly what goes into it, but it also alleviates the anxiety of trying to figure out what to order on the menu...lets face it, one can only eat so many salads.  I hate the bar, but everyone that wants to go out usually gathers there.  I order my "mocktail" or tea and sometimes get a refill but I am always ready to leave before everyone else because I am bored and quite frankly tired of watching others drink and drink.  Funny thing beer is, you order and drink one and you just want another and another.  Everyone around you doing the same thing.  I lightly mention that I am getting ready to leave and immediately find myself making excuses to go, "I am getting really tired", "its late and I didn't sleep well last night", "I don't feel very good" etc.  A lot of times I imagine that everyone is thinking that I am a prude or party pooper, I'm always the first one to leave.  On my way home from such events I get a little depressed, thinking about how nothing is the same anymore, how I feel like an outsider or an oddball, like I just don't fit into this world anymore. I love my friends, I love seeing my friends and visiting with them.  And I don't want them to treat me with kid gloves because I have cancer or because my diet is different from theirs.  But then I have to face the reality that cancer does make you a different person in every possible way.  I like to think that having cancer made me more aware of my health, my diet, my body, and more appreciative to be alive. Even though all of these good things came from a cancer diagnosis, it is still hard to overlook the social awkwardness of certain situations.

Rhody shadow on stump

ANOTHER PET SCAN COMING UP!
So this coming Thursday the 12th I am going in again for my 4th PET scan.  I haven't seen my oncologist for 2 months.  The appointment with him to determine the results of the PET scan is on the 17th...I will keep you all posted.  I am hoping that it is going to be looking even better than the last time.  I will be honest, I have been worrying about it lately.  I've been so tired, sometimes sleeping all day long, going to bed and sleeping all night and waking up just as tired as I was before all the sleep.  My liver aches still, some days more than others, but every time I feel it I can't help but worry "is it coming back?" "what will the scan say?" "will they tell me that I have to get chemo again?"  UGH!

I have been really frugal lately, another reason that I hate going out.  One meal at a restaurant can buy 3-4 days worth of veggies for me.  I rarely drive anywhere anymore.  It saves money (gas) and I need to get my brakes replaced which is something I cannot afford to do right now.  My car has been parked in the lot of my apartment building for almost 2 weeks now.  Another reason I don't go out.  I am waiting for my dad to get settled into his new place and then I will be taking my car up there and working on fixing brakes together in his garage.  I know it can't be that hard and my family (including me) are all handy like that :)

miniature forest 

In the meantime, the sun is shining here in Portland, its in the mid 80's, the birds are singing, the grass is green and the roses are blooming.  Funny, I feel like less of an "oddball" or "outsider" when I am in the woods, no pressure to go to the bar, the trees and I can just sit quietly and enjoy each others company.