Wednesday, February 29, 2012

Cholangiocarcinoma awareness month comes to an end.

The month of February is Cholangiocarcinoma Awareness Month and fittingly it is ending with today also being Rare Disease Awareness Day.  Being a rare disease cholangiocarcinoma has a 5 year survival rate of only 30% and only 20% of cholangiocarcinoma is found at an early stage.  If it has spread from the bile duct (cholangiocarcinoma originates in the bile duct) then the 5 year survival rate decreases dramatically if the cancer has spread outside of the bile duct and into the liver, other organs, or other parts of the body (as mine has).

Here is everything you ever wanted to know (or not know) about cholangiocarcinoma, and if you haven't found them yet I recommend checking out the site Cholangiocarcinoma.org, but please remember that some of the information found here can be depressing at best, so it is advisable to take this page with a grain of salt and remember that YOU make your own statistics.

On March 12 I return to the clinic for my 3rd PET scan since diagnosis day.  This is what the first scan looked like a short time after I was diagnosed.

You can see the giant black mass in my abdomen actually protruding out.  There were so many active tumors that the contrast did not even reveal my heart or kidneys (places where cells are very active).  You can even see how the gigantic tumor mass in my liver is pushing my stomach out, this was because at that time you could literally feel the mass and my tummy looked like there was definitely something wrong.

My liver function values were through the roof at about 280.  Everyone looked at me and said that they did not know how my liver was actually still functioning (normal values are in the low 100's).  I was a walking anomaly.  I even had one doctor tell me "You know you better get straight with god because you don't have long to live".  I fired him.



This was the PET scan I had done last August.  My second one since diagnosis.  You can easily see the difference in the two.  Now the tumors are (according to the report) no longer active and there is plenty of contrast left so that my heart, bladder, and other glands are clearly visible.  This was the report that actually said "complete remission from disease".
The gigantic black mass in my liver area is pretty much non-existant in this picture isn't it? I am also a lot skinnier, but chemo will do that to you.

This is the scan that the doctors couldn't believe (and still don't).  I got asked my one very interested oncologist "How did you do it? No one has ever just gotten rid of severe and extensive cholangiocarcinoma in only 17 months before!"

Like I have said before, you make your own statistics! If I had listened to the grim prognosis of the doctors then I might have just given up, I might not have fought as hard.  I might have just accepted that I could be dead in months.  I, instead, used this as motivation.  I fed on it.  I knew that I just had to find every single way I could attack this cancer on my own through my diet and lifestyle.  I literally did everything I could afford or find.  I got acutonics, massages, acupuncture, nutritional IV's, read all kinds of books about how to eat, think, meditate, and stay grounded.  I took endless supplements to support my body while going through nearly 2 years and over 40 chemotherapy treatments.  In short I wanted to control everything I possibly could especially since everything seemed so out of control.  I felt that somehow I had gotten myself into this pickle and I was the one who had the best chance of getting myself out of it. It was my goal to prove them all wrong.

For many years I have had an interest in plants and natural medicine.  I used to say that "for every disease out there in the world, there is a plant that can cure it".  Those words I spoke so long ago rung in my ears after my diagnosis.  I knew that it was time for me to walk my talk.  The first words out of my mouth after the doctor told me I had cancer were "tell me everything, I need to know every angle to fight this from".  Little did I know just how profound this was.  Knowledge is power! With knowledge we can make better decisions not only about our treatments (which is vitally important to our health) but also about our own responsibility to our bodies, especially when/if they are compromised.  Better yet, our knowledge can literally help prevent us from becoming sick in the first place.  I also completely understand we can't always do something about "bad genes" or exposures to chemicals in our air and water...but we can reduce the risks of bad health by taking steps to create a healthy environment.  Here are a few things I have learned in the last few years and I want to share them with you.



Read ingredient labels on your food!


One thing I have found is that I purchase less food that I have to "read".  I mostly eat organic produce (no ingredient labels there).  You know exactly what it is, what it is made of...no need for an ingredient list.  When I do purchase food that has "ingredients" I read the entire list making sure that I know what those ingredients are.  If I don't know what it is I don't purchase it, that simple.  I may come home and look it up to see what it is and then determine if I want to purchase it on my next trip to the market.  I used to be fooled by the labels declaring "all natural ingredients" or "made with natural ingredients" but upon closer inspection of the actual ingredients I found that there were some "natural" ingredients but that there were also lots of unnatural ones as well.  This is how they fool you.  It is just easier (and it is also a rule of thumb) to do your shopping around the perimeter of grocery stores.  The aisles are where all of the processed foods are and I tend to avoid those.  Other things to watch out for are labels that say "made with organic ingredients".  Yes they may have some organic ingredients in there but most of the time there are only a few organic ingredients with a bunch of non-organic ones.  Most all processed and packaged foods contain derivatives of corn and/or soy.  Most corn and soy are all GMO and we all know how bad those are.  Also nearly every food we eat has corn and/or soy in it.  These ingredients are not meant to be consumed at every meal.  They actually add to our poor health.  I challenge you to read your labels and see if you can go for just 3 days without eating any corn or soy products.  Remember to investigate the ingredients that you don't know.  Hint: Xanthan gum is a corn derivative.



Fight for a healthy environment!


Our national parks are little pockets of wilderness the way it used to be.  They are places of solitude, imagination, awe, inspiration, excitement, and a much simpler time.  They are your public lands.  They can only remain healthy with your support.  Please consider purchasing an annual park pass for your favorite park or an annual pass for all parks.  They are some of the best ever places to go to feel connected with nature, release stress, breathe in fresh air (even though that is being compromised by coal plants, mining and other activities) and just take a load off.  If we neglect our parks (yes we all pay for these) they will be lost forever, and that makes me very sad.
Arches National Park, Utah
Vote to end various forms of pollution, from shutting down coal fired power plants to banning plastic bags, to stopping fluoridation of public water supplies.  I know that you are only one person, but so is everyone else.  If all of us took steps to clean up our environment just think of the impact we could have!  Change is always initiated by the power of one!
As for you home, purchase some plants to clean you air.  Here are the top ten houseplants that can help keep your indoor air clean.  An air purifier is a must! Mine runs in my home 24-7 and it's benefits are very noticeable.  The air is much cleaner and it actually smells nice too!  I have one with a washable filter so that I don't have to toss old ones and purchase new ones.  I also use Himalayan Salt lamps around my home.  Not only are they pretty to look at, they also emit negative ions that help purify the air by removing dust, allergens, smoke, bacteria and a lot more! I keep one right beside my bed, and one in the living room.  The only time I ever turn them off is when I go to bed.  They work wonders!




Read the labels on your health care products!


I have said this so many times already but it is so important that I feel that it cannot be said enough.  Our skin is the largest organ of our body.  It soaks up everything we put on it, from lotions, to shampoos, to nail polish.  It only takes 28 seconds for our skin to absorb what we put on it.  After that it travels to our liver to be processed.  Is this making sense now?  The word "fragrance" alone has so many chemicals in it your head would spin.  I can't begin to count how many products I though were good (because I of course got fooled by the packaging touting "orgainc" ingredients) but once I read the labels I found many ingredients that I couldn't pronounce or I found them all to be decent except for that one word at the bottom of the list, "fragrance".  This is another place where you have to be diligent about your label reading and if in doubt, either toss it out or do not purchase it.  There is a great site called The Cosmetics Database by the Environmental Working Group, where you can go and look up a product or ingredient to see exactly how toxic it is and why as well as a rating on the safety of said product.  If you are looking for some really awesome place to get started on finding toxic free beauty products I recommend trying Ava Non-Toxic products.  She gets rave reviews about her stuff all the time!
I used to love painting my nails!  I had a very extensive collection of nail polish (my girlfriends will attest to this).  I loved getting mani's and pedi's.  I don't do that anymore though.  I do my own mani's and pedi's at home sans polish.  I know, I know, you are probably saying "there are less toxic polishes out there, they even sell them in the natural cosmetics aisle".  Here is my beef...Paint is paint.  There is no way that that can possibly be natural.  When we put paint on our nails guess what? It soaks into our blood.  And how do we get that paint off? With more chemicals, right?  Flip that bottle of polish over and read the label.  Are those ingredients natural?  I was walking by a nail salon the other day and felt that old feeling in me longing for my half an hour of pampering and cuticle trimming, sitting in that massaging chair while someone waits on me literally hand and foot.  Then I saw a young girl, no more than 10, emerge from fumes of the open door to the nail salon.  The little girl had her toes and fingers painted bright red.  She was very obviously pleased with her new nails.  I actually felt sick to my stomach right then and there.  I wondered that if this mother knew just how toxic that stuff was that she paid money to have put on her child, let alone sit in toxic fumes for at least half an hour.  I wondered if the day would ever come where she stopped to think about how something as seemingly innocent and harmless as nail polish could actually be contributing to hormone imbalance and potentially deadly chronic conditions in her or her child.  Please don't paint your nails.  Please?
Same thing goes for perms, most all hair dye, brazilian blowouts or any other hair straightening.  Not only does your skin soak all these chemicals in in 28 seconds, but just think about the fact that you are actually putting them on your head!


I realize that we cannot control everything in our worlds, but we can control more than most people think we can.  Remember, knowledge is power! It is time to take your power back, become an informed consumer and remember that you are a powerful,  powerful decision maker in your own health and wellbeing.  Wield that power responsibly and be educated about your choices!  This will not only create a better future for you, but for many generations to come.


9 comments:

  1. Good luck on your next PET! I have your package, I've just been crazy sick. I'm doing better, so I just need someone to help me go to the Post Office, as I have several things to mail now.

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  2. Oh Shanna!
    I hope you are feeling much better. You just take good care of yourself and stay healthy my friend.
    Much love and many blessings of health and happiness coming your way.

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  3. Those PET scans are haunting, but I'm glad you were doing better with the second one. Kudos to you for firing that jerk of a doctor! He had no business telling you about how long you will live.

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  4. Beth,
    Seriously huh! Can you believe that doctors actually do and say that stuff to their patients?!
    I am a little nervous about the scan, especially since I haven't had chemo now since the end of November. I am focusing on a clean bill of health!

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  5. So my sister was just diagnosed in August 2015. Her tumor markers were up last week when she had a blood test. She has just completed , I believe 2 rounds of chemo which consists of 1 treatment a week for two weeks and then a complete week off. She is now in her week off of round 2. Just wondering how you are doing and if you experienced some of the same setbacks. Also could you elaborate a bit on any and all alternative treatments you have used? Are you experiencing any pain?

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  6. Thanks for sharing this blog. chemo is really frighting treatment.Now just need to have healthy diet as it is time cover. cancer care center

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  7. Cured of TNBC!
    I want to take this time out as a cancer survivor to encourage women out there still suffering from this with my story on how i got a cure. The sad news about it is that i was diagnosed on my 36th birthday in 2008 and with stage 3 TNBC which after i made research was a very aggressive form of cancer at that point i decided and told myself i was going to die and that the end has finally come. All my life i never thought of having breast cancer because i was very active and i worked out at the gym several times every week and my diet was okay. In my search for a cure after 6 years of diagnosis and even after chemo which i did twice spending thousands of dollars but to no avail, until a church member told me all about Dr Aleta a herbal doctor that specializes in treating TNBC, who could help me with a permanent cure, i doubted this at first but i later gave it a try following her methods and instructions. It took 3 months and after it all i felt normal but still went for diagnosis and i was clean today i am proud to say i am a cancer survivor no nodes and i am totally free the new diagnosis confirmed it. Do not die in silence or ignorance because of breast cancer just simply reach her on aletedwin@gmail.com and also for any related cancer illness don't be shy just speak to her today.

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  8. Cured of TNBC!
    I want to take this time out as a cancer survivor to encourage women out there still suffering from this with my story on how i got a cure. The sad news about it is that i was diagnosed on my 36th birthday in 2008 and with stage 3 TNBC which after i made research was a very aggressive form of cancer at that point i decided and told myself i was going to die and that the end has finally come. All my life i never thought of having breast cancer because i was very active and i worked out at the gym several times every week and my diet was okay. In my search for a cure after 6 years of diagnosis and even after chemo which i did twice spending thousands of dollars but to no avail, until a church member told me all about Dr Aleta a herbal doctor that specializes in treating TNBC, who could help me with a permanent cure, i doubted this at first but i later gave it a try following her methods and instructions. It took 3 months and after it all i felt normal but still went for diagnosis and i was clean today i am proud to say i am a cancer survivor no nodes and i am totally free the new diagnosis confirmed it. Do not die in silence or ignorance because of breast cancer just simply reach her on aletedwin@gmail.com and also for any related cancer illness don't be shy just speak to her today.

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  9. I am so glad today and happy that i am alive to see another new day and not just that but also to share the goodnews of how i survived a deadly stage 4 cholangiocarsinoma (bile duct cancer). I was told by my oncologist that i had just 6 months left to live and i was so scared to lose my wife. I was lucky to contact Dr Mrs Aleta who i told all about it and she is the nicest person i have spoken to. She recommended a herbal medicine for her which she took that cured her in less than a month. Well for more info about the medicine and cancer treatment simply reach her on aletedwin@gmail.com she can help you too. Contact her for any form of cancer too.

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