Never A Dull Moment

So I recently have been taking a little time off and really relaxing.  It has been really nice to unplug and get some time away from phones, email, social media, doctors, appointments, good news, bad news, no news, decisions, scans, daily life, etc... I got to spend some quality time relaxing with my best friend (my mom) and it was simply divine and oh so very needed by both of us after the crazy 6 months that have been 2013.
Now it is back to the grind, the assassination, the kicking of some cancer booty, time to roll up the sleeves and put my game face back on.

From the last CT scan back May,  it appeared that I had some cancer going rogue and building condos outside of Livertown, collectively they appeared to be about the size of an almond (we thought there were only two of them at this point).  Then my radiologist recommended that I get a PET scan to make sure of exactly what we were looking at and that way I could make a more informed decision about my choice of therapy.

So I recently got results back from the PET scan and the first sentence says "Significant progression of disease since July 2012..."  Not good.  My oncologist shows me the pictures and there are now a bunch (too many to count) of places outside of my liver mostly in nearby lymphs (one in a lung and one in my pelvis) where there showed PET avid activity (it took up the sugar rich contrast like cancer does) so this now leaves me feeling once again a bit more anxious about my path forward.

I have spoken at length with my oncologist and natural doctor and we have come up with a kick ass cancer assassinating plan!

Vitamin C Love

I am already taking such things as DCA and many other natural cancer fighting treatments and supplements and I will continue to get high dose vitamin C IV therapy.  I am going to sandwich my chemo treatments right in between two vitamin C IV's.  So still vitamin C three times a week  and chemo at least once a week (maybe more frequent to start I dunno yet).
I start round two of chemotherapy tomorrow at 9:30am.  The chemo will be the same as last time.  Mega dose to start with then as my body weakens the dose weakens.  They like to hit it hard at first.  My gramma is coming down to go with me, ya know, cause grandmothers are awesome like that!  The vitamin C is supposed to make the cancer more susceptible to chemotherapy and it is said to make the side effects up to 50% less severe! HELLS YES!! This is what I am going to manifest! Less side effects  NO side effects! Plus they will no doubt pump me full of steroids and other anti nausea drugs as well as cytotoxins and they seem to make it much more tolerable.  Sometimes drugs aren't so bad after all :)

Not exactly what I was envisioning, especially after such a tumultuous start to the year anyway, but hey...never a dull moment in the life of The Cancer Assassin!
Bring it on! I've done it once I can do it again, hell, I'm a pro and I am already ahead of the game now.
My goal right now is just to appreciate each and every single day, drink it all in and share the love!

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

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.

I'm an anomaly...great! Someone told me that ALL miracles are anomalies!

Well, the appointment with my oncologist Dr Shao was a little disappointing and bubble bursting...
He is not convinced that all of the cancer in my liver is dead.  His comment was that CC is super slow growing so it is not surprising that it did not show up on the PET scan.  I am all in agreement that I would much rather be safe than sorry so I am continuing to get my normally scheduled chemotherapy treatments every other week (although I do have a 3 week break right now, woot!) and in 3 more months we are going to do another scan to see whats going on.
In the meantime, I will be speaking with all 3 oncologists to see why each one has a differing opinion...That will be interesting.

So I guess that that piece of paper from the official PET scan report that said "IN REMISSION" was just a teaser after all....It is NOT official yet....But in my mind I KNOW that I am kicking some cancer ass.  Just because they have never seen anyone react so positively before and just because NO ONE has ever cured themselves from stage IV INCURABLE, INOPERABLE cholangiocarcinoma, my job has suddenly gotten a lot harder.  Not only now do I have to kick cancer ass, but I also have to convince the medical world that it can be done.

I've got a message for them and for stupid cancer.

I AM JUST THE WOMAN FOR THE JOB!

...so some (most) believe it can't be done, that is my motivation to prove them wrong

My mom knows this well enough...

If you want me to do something, DON'T keep asking me to do it
LIKEWISE
If someone tells me 1 million and one reasons why I can't/shouldn't/it wont work/you'll never make it/etc then you are damn straight that I will make it my personal mission to prove them wrong.  This is no exception.

Like I have said before,

Cancer Can Suck It!

...and by the way, it has been quite the emotional roller coaster hasn't it?

CANCER CAN SUCK IT!

I am going to write a more lengthy post about this a little later this week but for now I just have to share my news to those of you who may not have heard yet.

After my appointment with Dr Perkins the surgical oncologist on Monday I had another PET scan on Wednesday and an appointment with a radiological oncologist named Dr Jason Bauer who was planning to administer Yttrium-90 direct radiation beads the size of a grain of sand through a catheter, about the size of a human hair, inserted into my groin and threaded through veins and such into my liver.
He came into the exam room, introduced himself and immediately began complementing me on how great and healthy I looked in spite of having extensive and aggressive stage IV cholangiocarcinoma.  He commented that he was close in age to me as well as Dr Perkins (the surgical onc).  He was basically in awe.
Then it happened. He got all serious and told me that he really wished he could help me with his miracle treatment but he just can't.  The reason he can't is because the PET scan (this makes the only one I have had since my first diagnosis last March 24, 2010, yes that's right LAST YEAR) shows that I have

 NO MORE BIOLOGICALLY ACTIVE OR LIVING CANCER IN MY BODY!!!

So what does this mean??? it means that I am officially 

IN REMISSION!!!

One and a half years ago I was given about 6 months to 1 year to live.

One and a half years ago I was given a 20% chance to live 5 years.

One and a half years ago my life changed forever.

My priorities became very clear.

Life became very simple yet unimaginably complicated all in the blink of an eye.

Even though it was Friday when I got this news I am still in shock.  It is still sinking in.

I have my regularly scheduled chemo and appointment with my oncologist tomorrow so perhaps it will seem more official then.

I am still going to get chemo for a while to make sure all those  bastards are completely fried and that there isn't one little cell that is still clinging to life to turn into full blown tumors again.

The reason they haven't found this out yet is because they haven't done a PET scan, they figured they didn't need to...the cancer most likely hasn't spread due to the nature of CC and the CT scans showed that they were always shrinking AND no one and I mean NO ONE just cures themselves of severe cholangiocarcinoma EVER and especially in 1.5 YEARS!!!

Everyone is flabergasted, floored and shocked.  They all want to know "What did you do?".

I told them, you all know what I've been doing.  Eating right (no chemicals, no processed foods, organic always, limiting or eliminating all together dairy, and animal proteins, juicing) taking supplements and vitamins, getting nutritional IV's, getting exercise as much as possible when I feel good, HAVING A POSITIVE ATTITUDE, not meaning I am always happy, meaning I always try to find something good, some positive in every situation no matter how crappy it is and how hopeless it feels and how alone and abandoned and scared you are and no matter how it seems and feels like the ENTIRE UNIVERSE is conspiring to your disadvantage, and no matter how much I sometimes HURT both physically, emotionally, mentally, spiritually, etc I just never EVER gave up, EVER!

I also have an amazing support network, very loving friends and family, kick ass, state of the art, cutting edge doctors on my side.

I made these changes in less than a month.  I didn't have the time or luxury to do it gradually.

More later, I LOVE you all and wish you all the happiness and health in the world.

Laura

The Cancer Assassin