Wednesday, October 2, 2013

Bittersweet News

If you are reading this, I hope it finds you happy, healthy and full of life!

Is anyone else out there having the most challenging year ever?  I remember reading my horoscope at the beginning of the year and they all said how awesome this year was going to be for me and how it was going to be the year I had been waiting forever for.  Hmmm...maybe I'm missing something.  Not that it is a bad year.  Anytime you are alive and functioning it is a good, good day.  I guess that it has just been unusually challenging for me pretty much ever since that fateful scan I got way back in January that said "knock knock, cancer's back to play".  I have learned many lessons this year and am still on my learning journey.  I have always thought that when the time comes that you have no lessons left to learn and no more contributions to give, you move on to whatever is next.  Looks like I might be around for a while cause I still have many lessons to learn :)

So I had a CT scan last week.  Got the results on Friday.  It wasn't bad news but it wasn't spectacular news either.  It was good and I am definitely fine with good.  It appears that the margins on some of the tumors (there are too many to count once again all kind of running together here and there) are getting fuzzier and not as distinct.  This is a good thing, it means that the cancer (tumors) is dying or at least not as active as it was 3 months ago.  None of them had shrunk enough to really mention in the scan reports and the cluster in my nodes near my hepatic artery and the rest of the super highway of arteries that I have in there (I am one out of 10,000 born with my liver being supplied with blood by different arteries than most other people) are still there being inflamed and causing pressure and general discomfort.  My oncologist said he was happy with the results of the scan as did my ND.  I am happy about it too.  I didn't really expect that everything would be drastically different in a mere 3 months.  Also, it is important to remember that a CT scan only shows masses and not metabolic activity of the cancer.  So it is a good scan to get a general idea of what is going on and to measure the growth or shrinkage of tumors, but not such a great scan to see if the tumors are actually living or not.  The PET is better for that purpose  I still have a lot of dead tumor material in my liver and it still shows up on the CT but not the PET.

Even though I am very happy about the news that I am no worse off than I was three months ago, that the tumors aren't any bigger, and that some of the margins are fuzzier, I still can't help but feeling a little disappointed.  It's really hitting home lately (pretty much ever since I almost died from radiation) that I am now living in what the statistics say are the 2% chance to live 5 years.  BUT you and I also know that I make my own statistics and I don't fit neatly into those boxes.  It still weighs heavy...

All this Vitamin C is really kicking some booty though.  Compared to this point in my last chemo back in 2010 there is a stark difference in my appearance and my overall health.  I still have hair that isn't falling out.  I don't have huge rashes on my face that burn and itch.  My chemo brain is not nearly as bad as it was last time.  I don't get sick/drive the porcelain bus three or four times a day, unless I miss too many vitamin C IV's then its all bets off.  I will let you decide.  Here are two pictures of me.  One from 2010 after 3 months of chemo, and a recent one.  Big difference huh?!  It is because of your support and generosity that I am able to get these vitamin C IV's.  Thank You!!!!!
2013
2010














A friend of mine nominated me to be on the Ellen show!  She is looking for an "inspiring person in need" and my friend thought of me :) Pretty awesome!!  If you would like to nominate me as well please feel free to do so,  of course that is if I inspire you :)  Here is the link to the nominate an inspiring person in need page.  You can find my mailing address and my email address at the top right of my blog and my age is 41 (for a couple more weeks).   I would love to have the opportunity to reach so many people and give them hope, especially those who are living with cholangiocarcinoma.

I spoke to my ND about my scan and how to proceed with the Vitamin C IV's and as great as those C's have been for me I am not going to be able to get many more.  There is enough left in my account for about a month of IV's.  I am supposed to get three every week.  I have dropped it down to two a week. Doc P wasn't too happy about that.  He says three a week are the protocol and that is what he suggests. I'm just not going to spend my energy worrying about that if I can help it.  I am going to get them until the $ runs out then figure it out then.  I know that every time I get one of those IV's it is prolonging my life.  It really irritates me that insurance wont cover something so obviously good but that is another thing that I'm not going to spend any energy on thinking about.

It's weird.  I have always loved food and eating good food.  Lately I just cant seem to gain weight though.  I waiver between 110-115lbs.  It probably has something to do with the chemo/steroids and lack of appetite AND the fact that most days I'm out of the house before breakfast.  On good days I can make and take lunch and breakfast with me to my IV's or chemo.  If I feel crappy the night before and have no energy then I usually live off ensure and whatever snacks I can toss into my lunch bag before I have to head out of the door.  Time and energy=no hunger.  I am sure that most of you can relate to that one.  Sometimes I sit and think about how awesome it would be to have a "normal" life.  You know, the one where you go to work every day and make plans for the weekend to go do something fun like hiking or skiing or camping.  One would think that I have all kinds of free time...Yeah, I wish.  I would love to have the energy to go for a hike.  I used to hike all the time all by myself.  I never wanted to  have to find someone to go with me just to be able to get outside.  I can't even count the miles I have hiked solo or how many times I have camped solo or skied solo.  My muscles are pretty much non existent these days.  Stamina is gone (except when I get the steroids) and walking up a flight of stairs makes me want to find a chair.  It is a little depressing especially since I am used to being so active.  I didn't even go climbing this year.  What a crime!  I get told a lot that if I do more I will have more energy to do more etc.  I first have to have the energy to do something before I can do more.  I try though.  Yoga is nice but I still tire quickly.  My energy levels are just about enough to get some light housework done a few times each week then it's snuggle with the kitty time.  I am beginning to feel that old familiar overwhelmed feeling creeping back again but it is more manageable this time since I am also not struggling with horrible relationship problems like last time and that is definitely something that I am thankful for.  There are still some days that I feel like going postal and freaking out on someone or multiple someones.  Luckily the only people who have had the unfortunate experience of seeing angry Laura are Comcast and they totally deserved it :)


Who loves the cooler weather?!
I love summer, spring, winter and fall :)  I get excited every time the seasons change.  Fall is probably my favorite though.  I love all the colors, the crisp air, and halloween.  The transition of seasons, schlepping off of old things, habits, patterns, and staleness is gratifying and cleansing.  It is fun to wear comfy warm clothes, read books, snuggle with the kitty, and drink tea as you listen to it rain outside.  I've been rearranging the closet; summer stuff in back, and winter stuff in front.  I've been stowing the sandals (sniff, sniff), bringing out the boots (yay!), and cleaning and making way for the new year, death and rebirth.


Here is link to click upon if you wish to donate to my clinic for my high dose Vitamin C IV treatment.
The Center for Traditional Medicine

You may also contact them at 503-636-2734 to donate directly into my account there via credit/debit.

Here is my Amazon Wish List  where I have listed my supplements and vitamins.


I hope that you all know I am forever grateful, humbled, inspired, and able to live longer due to your generosity and unwaviering support.  I think about how lucky I am to have such wonderful friends and family every single day.  YOU are the reason I am still here posting on this blog, and of course a good attitude never hurts either.

Chemo day is tomorrow and my lunch is already packed :)

Many healthy blessings to you all!


CANCER CAN SUCK IT!!!