Wednesday, April 25, 2012

Questions answered

Since the news of my recent PET scan back in March I have been receiving a lot of emails from people all over the world who have received the news that they, or their loved ones, have cholangiocarcinoma or another form of cancer.  I have also received some emails from those who have loved ones that have recently ended their struggle with cholangiocarcinoma and have gone on to find a different kind of peace. Those emails are a humbling reminder that my story could have ended so differently.  One of my loved ones could have been saying the same about me right now to another person with CC.  How hard I fought.  How I changed my diet, my lifestyle, sought natural therapies, received chemotherapy for two years, remained active, had a positive attitude and tried like hell to survive.

This reminds me of something important that I feel incredibly adamant about expressing to you right now.  Even though we are all made up of the same parts we are all not the same.  What worked well for me might not work for another.  I believe that diet is extremely important to health and that you literally are what you eat.  I also feel that it is important to eat as many vegetables as you can and limit the animal protein.  I do not think that being a vegetarian or meat eater is good or bad.  I do think that there are times in everyones lives that eating meat is good and times when veggies are the only way to go, but only you know that.  And if you don't then I highly recommend doing a little research and soul searching and paying attention to your body and it's needs.  Only you know what is best for you.  The same goes for supplements and vitamins.  It is best to try to get these needs met from the food you eat (again the importance of diet), but it is not always possible to do this.  Here is where the need for adding supplements to your diet is found.  I would never recommend that you try to do this all by yourself.  I would highly recommend that you consult a doctor of natural medicine for this and perhaps even a nutritionist.  I have done countless hours of research since "D-day" in March of '10.  I have visited alternative healers, drank ox bile powder, got massages, acutonics, acupuncture, shiatsu, taken many, many herbs and supplements, exercised as much as possible, practice visualization and manifestation, sing songs to my liver every day, and think about every single thing I put into my mouth.  I am obsessed with healing.  I also believe attitude has a lot to do with healing.  I am fascinated by how what we put into our mouths is directly translated into our bodies and minds.  We literally become what we eat.  We are a product of our environment in every way.

A lot of you out there want to know what I did to kill my cholangiocarcinoma.  How I "beat" it.  Let me say that I am not certain that I will ever feel like I "beat" it.  It is with me every day.  I still feel the dead tumors in my liver, sometimes they hurt and it makes me freak out.  They constantly remind me about my choices and adjust my attitude on life.  I sure did a number on it though.  I did the impossible and I am very sensitive to the need to stay healthy so that it never comes back.  It wasn't the CC but the chemo that really did the long term damage.  I worry more about those side effects a lot and still struggle with many of them.  I often forget that I went through two years of chemo and wonder why I am so tired all of the time.  I try to set realistic goals so that my days are positive and I am not beating myself up over what I didn't get done or what self imposed expectations didn't get met.  In short it is still a work in progress.  I haven't joined the land of the "normal" yet but I am still working towards it.  It doesn't seem so far away now at least.

Now, to answer some questions.  I hope that I have addressed everyone's questions.  I began to feel that many of the questions were the same so I thought I could reach more people this way rather than private email and still have a little energy left for myself.  I will start at the beginning.

Back in May of '09 I began having a sharp knife type pain in the center of my abdomen directly in the middle of my ribs right at the bottom of my ribcage.  It hurt to breathe.  I felt some "hardness" in that area as well and it was very tender.  A couple of weeks later the pain returned and was so bad that I went to the emergency room.  I woke up crying in the middle of the night it hurt so bad.  While at the ER I was given an ultrasound to see if I had gallstones.  I was relieved.  The relief quickly faded when they spent about an hour trying to find some reason I was in so much pain.  They saw nothing at all.  They sent me home telling me to get in touch with my primary doctor to get an endoscopy.  I had already had 3 prior encoscopies and knew that it would tell them nothing.  The pain subsided a bit in the next months but often came and went.  I began to feel a definite hardness in my body in the area where it constantly hurt.  I asked my primary about it in August of '09 and even had her feel it.  She knew my history of digestive disorder (prior IBS diagnosis in '98) and for some reason this pain seemed insignificant to her.  She felt the (by now) giant hard lump in my abdomen and said "It seems unremarkable to me, it could be a hernia.  Take some prilosec for the next month and let me know if it feels worse."  So I did what anyone who has herd this a million times do, dismiss it and move on.  And move on I did.  I moved to Portland in December '09 and in March I hurt so bad one day that my boyfriend at the time said "I don't care if you have no insurance you need to go to the doctor."   I went to see a doctor at a same day clinic, she ordered a CT with contrast scan and the next day had full blown stage IV, incurable, inoperable cancer.  No one had ever done a CT with contrast scan before.



MY DIET


Three days after my diagnosis I had my "last meal".  I knew I had to change my diet, that was obvious to me.  I allowed myself to have one of my favorite meals before my dramatic diet alteration.  That night I ordered a steak, salad, and glass of wine.  It was devine!  The next day everything would change.

After devouring Kris Carr's book Crazy Sexy Cancer I had a basic game plan for my diet.  I eliminated nearly everything.  I stopped eating meat, diary and animal products (occasional piece of fish).  I eliminated sugar. I eliminated caffeine.  I eliminated alcohol.  I eliminated all processed food and chemicals.  I read every ingredient on every label and if I didn't have a good idea of what it was I would not even put it in my cart.  I shopped almost exclusively in the produce department.  I ate organic food as much as possible.  I ate a lot of kale, made a lot of wheat grass juice and other green juices.  I had a hard time eating in restaurants unless they were vegetarian (even then I had to make modifications), or raw.  Juicing can be expensive so try to purchase what is on sale.  It was not easy and I wont pretend like it was.  I literally spent hours in the grocery store reading labels and looking for the elusive healthy food down the aisles.  For me it was not a question of convenience, it was a matter of life and death.  My body needed nourishment and a flood of healthy food just to have a chance.  I was going to give it to it.


MY SUPPLEMENTS


I knew that I needed to take supplements.  My body had been pushed too far and it needed help.  My first attempt at finding a good naturopath had failed miserably.  I didn't let this discourage me though and sought out another.  Dr. Peterson had been recommended to me by an alternative healer who felt that he could work miracles.  I contacted him the next day and my first appointment was scheduled.  Dr. Peterson worked with me on finding the right supplements for me to take while getting chemotherapy.  He thought carefully about each and every supplement he would have me take.  Some were to help my liver detox and function better.  Some were to negate the side effects of chemotherapy and keep me healthy during my toxic treatments.  Some were to replenish my nutrients, or to fight cancer but they were all tailored to me personally for specific reasons.  Some were to help me sleep or for hot flashes brought on by "chemopause".  Some were no brainers like curcumin, turmeric, milk thistle, green tea, shark liver oil, vitamin C, etc. and some were pretty specific to my lab results and CBC's.

Here is the list of what I was on during my chemotherapy treatment.  You can also find it on my Amazon wish list

Maxiflav, Scientific Botanicals Inc.
Curamed, Terry Naturally
Shark Liver Oil, Scandinavian Formulas
Liver Support, Vital Nutrients
Pure Lean Nutrients with Metafolin, Pure Encapsulations
Oncotonin, Cardiovascular Research
Detox Formula, Vital Nutrients
Vitamin D-3 5,000IU, Pure Encapsulations
Ultra Potent-C 1,000, Metagenics
Ultra Clear Plus, Metagenics
Mycelized Vitamin A, Metagenics
Selenuim, Scientific Botanicals
Artemisinin, Allregy Research Group
Seriphos, Interplexus Inc.
Cortisol Manager, Integrative therapies
HRT Plus, Longevity Plus

This is what I am taking now.  You can also find this on my Amazon wish list.

Ultra Potent C 1,000 IU, Metagenics
Quercetin, Vital Nutrients
Milk Thistle, Vital Nutrients
CuraMed, Terry Naturally
Oncotonin, Cardiovascular Research
Vitamin D-3, Pure Encapsulations
Green Tea Extract, Vital Nutrients
Detox Formula, Vital Nutrients
Liver Support, Vital Nutrients

I am also on Urea (Carbamide) therapy (25g/day in 1 qt. organic pomegranate juice and filtered water) and
Low Dose Naltrexone both for preventing and killing cancer.

Again, I would highly recommend that you consult a doctor of natural medicine before you begin any supplement regime.  This will not only ensure your safety but ensure that you are getting supplements tailored to your individual needs.


MY LIFESTYLE

I used to like to go to the bar for a beer or two.  I stopped drinking after my "last meal".  I never thought I would ever stop drinking or even have to stop drinking.  I chose to because I just didn't see the point.  Why would anyone who had liver cancer think that drinking would be a good idea?  I certainly did not think it seemed smart.  It has been over two years and I still have not had more than a sip or two of beer.  It just doesn't appeal to me anymore much like fast food or microwaved food does not appeal to me.  I realize the value and importance of exercise but I also realize that my body needs time to heal.  When I was feeling good (like right after chemo and the steroids they gave me hadn't worn off yet) I would do as much as I could or wanted, often overdoing it a bit but it all being worth it in the end.  Conversely I would sometimes lounge, relax and sleep for days not even having the energy to prepare a meal.  I just tried to go with the flow and listen to what my body wanted to tell me.  It needed me to take care of it and give it what it needed.
I strived to have a clean environment.  I got rid of chemicals in the entire house.  I tossed cleaners, shampoo, soap, face cream, dish soap, bleach, air fresheners, laundry detergent, deodorant and whatever else I could find that had chemicals in it.  I used the Cosmetics Safety Database to see how toxic my products were and to find ones that were less hazardous to my health.  I made my own cleaning solutions and quit buying chemicals at the store.  I purchased an air purifier and a couple of himalayan salt lamps to purify and ionize my air.  I refill a 5 gallon jug with filtered water ever week.  I do not use a microwave or non stick cookware.  I always bring healthy snacks with me almost everywhere I go just in case I get hungry or I am out longer than expected that way I have something healthy to eat.  I take many hot detoxifying baths with epsom salts, cellular detox salts, mustard baths, always adding essential oils to the mix.  I dry brush every day.  Your skin is your largest organ and dry brushing helps you rid your body of toxins through dead skin as well as increases circulation.  I have and use a rebounder whenever I am not able to do much hiking or skiing.  Rebounding helps drain the lymphs contributing to the detox process.  I took the time to relax when I needed it and tried to see the beauty in each and every day.  I told myself every day that I was "happy, healthy, and full of life" and really believed that I was going to kick some cancer ass.  I was determined to prove the statistics wrong.  I have always believed that what you focus on expands and feel that my thoughts and actions have direct impact on my life.  I'm not saying I was always positive, there were many times I felt hopeless.  It is important to give in to grief and fear a little sometimes in order to feel true happiness and hopefulness.  I cried both tears of fear and joy, sometimes at the same time.  Giving in on occasion is ok, but staying in that dark place isn't.  Nothing can grow but more darkness where there is no light.


MY SYMPTOMS/LABS ETC.

I never showed any signs of cholangiocarcinoma.  I was never jaundiced, had bile restrictions, or any of the other classic tell-tale signs of liver disease.  It just hurt in the center of my abdomen.  I do remember being very itchy, especially on my head.  I also remember having "floaters" in my vision and even mentioning it to my optometrist at one point.  I had classic signs of IBS, some nausea and fatigue.  I felt like I was a healthy person, I got lots of exercise, thought I ate well, drank moderately, used natural products etc.  I realize now that I was not as healthy as I thought, but still healthier than a lot of others.  My diagnosis literally blew me away and blew all the doctors away.  How could a otherwise healthy 38 year old female have such a rare and extensive cancer?
Upon diagnosis my alkaline phosphate levels were in the 380's, today they are 114.
My CA-19-9 values were 27 at diagnosis and today they are 24.

I am still anemic, have low red and white blood cell counts and a variety of other abnormalities mostly due to recovering from two years of chemotherapy.  The CBC's are getting better and I am slowly creeping closer to the "normal" range at every lab.  I keep waiting for the one where all of my blood counts are back to normal.  My next appointment with my oncologist is in May, 2 months from my last visit (I used to go every other week) which seems like a long time but it has been nice to not have to worry about having so many doctors appointments.  I still go in every week to every other week for a nutritional IV from my naturopath.  I have an appointment tomorrow actually.  I think he is going to put me on another therapy, fat soluble artemisinin that is administered in my IV.  We are taking no chances on allowing cancer to gain a foothold again and that is perfectly ok by me.

Some books that I would recommend to anyone who is currently researching natural ways to care for yourself or a loved one with cancer are the following.  I have found them all to be full of valuable information.

Crazy Sexy Cancer Tips, Kris Carr
Crazy Sexy Cancer Survivor, Kris Carr
Crazy Sexy Diet, Kris Carr
What to Eat if You Have Cancer, Keane & Chace
Beating Cancer with Nutrition, Quillin
You Can Heal Your Life, Louise Hay
Cancer, 50 Essential Things To Do, Anderson
Macrobiotic diet books, Kushi
The Cancer Fighting Kitchen, Katz
The Body Ecology Diet, Donna Gates
The Simply Raw Living Foods Detox Manual, Natasha Kyssa
Creative Visualizations, Gawain
Love is in the Earth, Melody

Please refer to the sidebar on the left to find many other resources online and other great blogs that are wonderful resources all on their own!

If I have not addressed everyones questions please let me know and I would be happy to answer them.  I wish you all the very best of health.  I still spend a lot of time researching food and natural medicine and therapies and invite you to follow me on facebook at The Cancer Assassin or on twitter @climbhikeski


I had a wonderful time with my father on our road trip from Tennessee.  It is nice knowing that my dad is not far away now and I can see him a lot more often.  We took our time driving across the country and saw the sights along the way.  It was my first ever road trip with my father and we both enjoyed it very much.  I am still trying to settle into my new place and unpack.  Chemo brain doesn't help especially since many things have been packed for months now and I don't remember where I packed them...Every day is an adventure :)



7 comments:

  1. glad to see you back in the blogosphere
    Cancer Warrior
    www.perksofcancer.com

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  2. Congrats on your success. We just recently found out that my husband's stage IV CC is "gone" also. He is staying on chemo though...We've got 2 little kids and don't want to give it a chance to return! Pursuing a second round of surgical opinions now. What a bumpy roller coaster this is!

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  3. Cancer Warrior,
    Thank you! It is nice to be back :)
    I will be getting in touch with you soon re: guest post.
    Healthy blessings to you!

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  4. Oh Liz!!!!
    That is such awesome news!!!! Hurray!!!
    Yes, chemo for a while longer (especially if he is able to tolerate it) is a great plan, just to make sure those suckers are fried! I am so incredibly happy to hear that your husband is doing so well!! This news just made my day!
    Here's to health and long life! And sending you and your family many blessings of health and joy!
    Laura

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  5. Thanks for the inspiring and informative post!

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  6. So love reading your blog. My dad was just told he has liver cancer, being the daddy girl that I am, this has turned my world upside down and uncovered ultimately my worst nightmare!I seem to recall reading in one of your readings, when first sick you took a supplement called Glucan -I thought you went on to talk about Glucan stating that it needs to be taken it verse orally to have benefits.is this something you wrote about? Did you take Glucan? I am sorry if I messed up,I have read so many articles and looked up so many sites. I need to find out about this, it is suppose to be really a good supplement, but my dad wouldn't be able to get it Iv daily...so I'm hoping I read wrong.
    I wish you breast health and nothing more than tons of sunny days and lots of long hikes... Take care. Brandy (luvmyernie@gmail.com)

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    Replies
    1. I am correct van error in the above comment I just wrote. I wrote... I thought you mentioned the Glucan was to be taken by IV VERSE BY MOUTH .
      Sorry about my errors

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