Monday, November 25, 2013

It's about time

I've been kinda quiet lately...

I honestly haven't had much to talk about.  My schedule is pretty much the same every day and things really don't change much for the most part unless it is my day off.  I usually go to get a vitamin C IV three days a week on Monday, Wednesday and Friday, although I am taking a break as I only have enough money in my account to get 5 more IV's (who wants to give a mobile for a Christmas present?).  I leave my house at about 8:15 and arrive back home around 2-3 in the afternoon.  Sometimes I stop for a few groceries or to run an errand but that's only if I feel good enough.  Once in a while the vitamin C IV's sneak up on me and make me feel a little like I am trying to get a cold.  I think it is all the toxins being flushed out.  The next day I usually feel better though.  I've been pretty low energy and very fatigued.  Most of the time when I get home I am so tired that I end up laying on the sofa for the rest of the day.  I am not in nearly as much pain and discomfort as I was from the last time I had to have chemo back in 2010-11.  I still have my hair (yay!) and I have less side effects over all.  I still have them though but I am not even close to complaining about it because I know how much worse it could be.  I have noticed that lately the chemo has been making me feel a bit jittery and moody.  Sometimes I feel like my patience is just gone and I mumble under my breath that I hope I don't run into any of my chatty neighbors before I can get into my apartment and lock the door.
Me and my kitty girl assuming the position on the sofa


Then there are the days I get chemo.  My oncologist has changed my schedule so now I get chemo every other week.  I always try to go on Thursdays because there are volunteers who give Reiki and massage there on that day.  It makes chemo go by much faster and it is soo relaxing.  I think I have read every magazine in there at least twice now.  The chemo is so cold (I think they keep the fluid bags refrigerated) and I usually have my prayer quilt and one or two heated blankets on me as well as a heating pad.  You've gotta get up to go pee all the time (hey 2000ml will do it) which requires unwrapping yourself from the cocoon of blankets, unplugging the gigantic double pump that you are literally attached to at your port, untangling all your IV lines so you don't trip over one and yank the port out of your chest (one of my nightmares), then you can make your way to relieve yourself.  It's like beer.  Once you break the seal you have to go all the time.  That's a good thing though because the chemo is very hard on the kidneys so it is essential to keep them flushed out.  I haven't gotten really horribly sick from chemo yet this go around and for that I am very thankful.
Chemo!

My rent went up, my food benefits went down, and insurance informed me that they will no longer cover one of my compounded medications that I take to boost my immune system (Low Dose Naltrexone) so now insurance officially covers absolutely nothing of my traditional/natural care.   I've been skipping some vitamins and some IV's because I can't afford to do them as often as my doctors and nurses would like me to.  It is starkly obvious how much good these natural treatments are doing, well, at least to me and those who see me on a regular basis.  Everyone always tells me how good I look and it is nice to get those compliments.  Sometimes I wonder if people think that I must feel good too.  I feel that someone sees me and says "you are looking really good! How are you doing?" to which my reply is "Aww, thanks! I'm doing good." in a cheerful voice because no one wants to sit and listen to my complaints.  I'm sure they have their own issues as well that they are not happy about.  The truth is that I very often do not feel very good but I'm not going to say that unless I realllly don't feel good, but by then it is pretty obvious.  Sometimes I don't feel good emotionally, like my head might explode at any moment from sensory overload or from bad news or when I just need time alone and neighbors just want to tell me stories from childhood that I have already heard more times than I can count.  About a month ago I found myself being very impatient and snapped on a few of my friends.  I think that it is a result of the chemo frying some brain cells and underlying deep down stress that comes along with the whole "terminal" thing which I subconsciously think about all of the time in some small way or another.

I would love to get outside more and go hiking or just exploring around the mountains or valleys.  I used to be insanely independent and would not think twice about going for a hike alone if no one else was available to go with.  I always enjoyed being alone in the woods.  I never once felt scared or in danger.  These days I sit on my sofa and think about how I wish I could go out for a solo day.  Most of my friends work during the week and have plans on the weekend so going alone is often my only option.  I don't feel quite so confident about going alone ever since the beginning of this year.
One of my few hikes this year
I am fearful that something might happen and no one would be there to get assistance for me.  It is a very defeating feeling knowing that you can't do those things that you love because of stupid cancer.  I got a midweek pass for Christmas from my mom and dad last season.  I went 5 whole times.  Lame...I only got to go up one time in 2013 and that was a few days before I went in for radiation.  I knew that would be the last exercise I would get for a while but what I didn't know was that it would be pretty much some of the only exercise I would get all year!  I didn't even bother to ask for a pass this year.  Another aspect of cancer.  Making long term, or sometimes even short term plans is hard to do.  You just don't know what's going to happen, will I even still be here (of course I will!) and how will I be feeling.  Will I be able to take time off of my treatments or will I be in the place where treatments are necessary multiple times a week.  If I do get to go skiing/boarding this year it will be a miracle.

I've been kinda quiet.  I suppose that I just felt that I really didn't have anything great to say and since I didn't have anything wonderful to say I just didn't say anything.  It's been slightly depressing laying around and hiding from people because I am just not in the mood to be sociable.  It is often depressing to browse facebook lately too.  So many people arguing, posting hateful things, belittling beliefs/people/situations/you name it, makes it feel less than inviting to be on.  I try to scroll through the things like that to find the nuggets.  Nuggets are those things that make you smile, question a belief, educate you, or just make you feel good.  You know what your nuggets are and chances are high that you look for those too.
Goofing off before my IVC

I'm scheduled to go back in for a PET scan the week before Christmas.  The PET is the scan that shows what is living and what is not.  It is a full body scan as well so this way we can find out if there is something going on in some other place in my body (fingers crossed for a clean scan).  We will have the results from that one before the 25th.  I hope Santa can find me this year under all of the blankets on the sofa :)

I have been getting more emails from people out there in the world who have loved ones suffering from Cholangiocarcinoma.  Some have had surgeries, some have not.  Some have just recently got diagnosed and are looking for information on the internet but have been discovering that there really is not much out there for this particular type of cancer.  That's sad.  Some want me to give them medical advice and I have to say that I am in no way qualified to advise you in that regard.  I can however share my story, my experiences and how I am doing now.  For those out there trying to figure out where to go and what to do to help their loved ones let me give you some of the best advice I can.

Eat lots and lots of vegetables especially dark leafy greens.  You can make soups, smoothies, juice, eat them raw, experiment with salads, and different grilling or broiling options.  Veggies are so easy to incorporate into our diets and require little effort and for the most part are relatively inexpensive especially if you buy what is in season which will also give you the most nutritional value.  Drastically reduce or better yet completely eliminate sugar from your diet of all kinds.  Especially the processed white kind.  If you must have something sweet then use honey, stevia, monk fruit, sucanat, coconut sugar or any other sugar that causes a lower spike in sugar levels.  You can find more about diet in a previous post here, My Cancer Killing Diet and Lifestyle and here at Questions Answered

Find a Natural Doctor or somewhere that practices Traditional Medicine.  Somewhere where you can get either nutritional IV's to keep your nutrient levels up while you heal from cancer.  Or somewhere you can get high dose vitamin C IV's (make sure they are reputable and run the necessary tests to see if you will be able to tolerate the intravenous C in high doses as some people with a certain vitamin deficiency can have very bad side effects from high  IVC such as death).
Some of my supplements
Also have a conversation with your new ND to see if any supplements (various vitamins and minerals, mushrooms, herbs, oils, etc. will help you.  Make certain that you get the advise of a professional ND and please don't try to start a supplement regimen all on your own.  What may work miracles for one person can cause more problems for others or might not even work at all.  Keep in mind we are all different and require individual treatment.  I might share a diagnosis of Cholangiocarcinooma with someone but that by no means indicates that we share the same symptoms or the same side effects from treatments like chemo or radiation.  We might even need different vitamins and supplements just as we share others in common.  Once again, seek out a Natural Doctor ASAP!  This doesn't mean that you need to ditch your oncologist, surgeon, or radiologist but you may want to and that is ok too.  You just may find that you like the integrated approach to your
healthcare or you may decide to go the entirely chemical free, radiation free route.  Either choice is fine, remember these are YOUR choices.  Don't let a doctor (any doctor) push you in one direction or another and if you choose not to tell your oncologist about you natural treatment that again is your choice.  Some oncologists refuse to give you chemo due to vitamins, antioxidants and other supplements.  That oncologist would not be my doctor for long if they told me that.

Next get rid of every single chemical in your home.  It is a big job to do it all at once but if you have CC you might not have the luxury of doing it in phases.  We all know that you actually are what you eat and that what you put into your body determines your health, both physically and emotionally.  However, what you put onto your body or what you inhale (into) also has dramatic and often undesirable effect on you.  Exposure is one of the major causes of cancer and if you continue to expose yourself to chemical filled household cleaners, laundry soap, toothpaste, hairspray, makeup, lotions, paint, furniture spray, window cleaner, cologne and perfumes of all kinds you will be damaging your body and harming your DNA cell replication process setting up the perfect conditions for creating mutant cancer cells that don't know when to stop growing.

Most importantly BE YOUR OWN HEALTH ADVOCATE!  I can't stress this enough.  Don't just assume that what your doctors tell you is the gospel.  No matter how great or horrible what they said to you sounds go do your research.  It is vital that you are informed about what you are doing for treatment.  If you want to know why high dose vitamin C is so important don't just take the doctors world for it or my word for it, look it up and research it for yourself.  This allows you to be educated about your own healthcare or the healthcare of your loved one this way the next time you are at the oncologists office and they tell you that what you want to do will contradict the chemo you will now be  armed with information that is accurate (because you devoted time to researching it or had someone else do it for you) and will be able to have a more educated and versed conversation based in scientific fact. This is so important!  Remember that you know your body better than anyone else, even those doctors and with that comes the responsibility of listening to your body to determine how you feel especially after you eat certain foods or take certain meds etc.


I can only share my experience with you.  I can tell you the things that helped me and the things that are helping me right now.  For me the Vitamin C IV's are magic! Insurance doesn't cover them and they are not cheap.  But when it comes down to living or dying I find any way I can to get those IV's.  I still get chemotherapy but the vitamin C IV's are actually complimenting the chemo by making it more effective by weakening the cancer cells through oxidation.  So not only does the C make me feel good and alleviate most of the worst chemo side effects but it actually makes my chemo work better!!  Now why wouldn't insurance want to cover that so you could actually get better or at least well enough to stop chemo and all of the other pharmaceuticals to manage chemo side effects.  Oh wait! That's right! If they cover it then we wont need as many drugs and then someones big deep greedy pockets don't get lined.

Speaking of Vitamin C IV's I have only 5 left.  I am hoping for good news on my upcoming scan.  I'm just focusing on them not seeing any cancer at all, maybe you can help me manifest a clean scan if you help me focus on it :)

Cancer Can Suck It!
If anyone would like to help with these vitamin C IV's you can.  They cost $175/ea and I am supposed to get them 3x/week but I will settle for whatever I can get right now.  If you would like to make a donation you can do so directly at my doctors office at The Center for Traditional Medicine in Lake Oswego, OR 503-636-2734 (closed tuesdays) and just let them know you would like to put some money in my account.  Even $1 is deeply appreciated.  Likewise you can also donate via PayPal at thegrassygreen@gmail.com or laura.york71@gmail.com.
AND if you just want to send support or encouragement or a love letter in the mail my address is
5800 NE Center Commons Way #104, Portland OR 97213
I love getting snail mail (unless it is from comcast) and I would absolutely LOVE to hear from you!

Please let me know if I can create a driftwood mobile for you or for a holiday gift as the proceeds from these go toward funding my IVC treatments.

I will keep you all posted before Christmas as to what the results of the scans are.  If you have a minute to send me some good JUJU and sparkly love and well wishes and prayers I will take all I can get.  Heres to a good good good scan.

I hope you all have an absolutely splendid and bountiful Thanksgiving filled with love and health.
I will be making the cranberry sauce this year and spending the holiday with my family at my gramma's house.  I am thankful that I am able to be a part of this life and that I have been blessed with so many incredible friends and family.  You are the best a girl could ever ask for!  Happy Holidays!!







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!!!

Wednesday, September 11, 2013

Catching up

Hello!

The past month has been an interesting one.  I got to spend some time with family and friends then there was the weekly grind of the combination of Vitamin C IV's and chemo 4 times a week for an average of 4 hours each.  I'm getting more used to it now though.  I'm just hoping that the skin over the place on my port that gets stabbed will hold up long enough to make it through all of this without tearing or deteriorating and thus needing some kind of surgery to graft skin or something....not thinking about it...
Vitamin C love!

Regardless of all the stabbing the Vitamin C is incredibly worth it!!  I ended up having to miss both my C IV's and my chemo last week due to a family health emergency.  My mom was sick with a sinus infection the prior week and ended up getting some antibiotics which didn't help and the sinus infection ended up turning into pneumonia.  She finally felt so bad that she asked if I could come up to Seattle and help take care of her.  We ended up at the ER at Swedish to which she was admitted overnight and at the doctors office twice.  It was the sickest I have ever seen her and she had me really worried.  After all she has done for me it was my turn to get to do something for her.  She has been running and working herself ragged (especially since the beginning of the year) to take care of me and it finally is catching up and taking a toll on her health. She gives so much and it made me feel so good to be able to do something to help her even if it was just for a week.  Thankfully she is doing much better now and as of yesterday even went back to work (half days right now) because it is hard work recovering from pneumonia...luckily I have never had to find out.

Anyway about the Vitamin C being worth it (got sidetracked).  Since I missed last week's IV's I started noticing that the side effects of the chemo started getting a bit worse; more nausea, some neuropathy, more ringing in ears, blurrier vision, less appetite, etc.  Interesting isn't it?  I can tell the difference for sure, the C is amazing stuff!  It's just a crying shame that insurance wont cover something so incredibly beneficial, but I'm not about to get started on that stuff.

OH! finally got the results of that Spectracell blood analysis back.  It shocked both my nauturopath and me to see that I am only slightly deficient in 3 things....B2, oleic acid, and D3  my immune response is above average and my ability to detox is in the normal range.  Even though I have cancer and even though I am getting chemotherapy my results were still this good! I just knew that vitamin C IV's were the way to go!  This test was representative of the past 6 months not just  snapshot in time.  Pretty cool test and even more impressive results.  They are all easy fixes too, gonna take a B2 supplement (folic acid) and drink a shot of olive oil every day (7800mg of oleic acid!), and increase my D3 &K2 spray to twice daily and Shazam! Not too bad huh?!

My CT scan is scheduled for Sept 25th with results on the 27th.  My oncologist still thinks that I am doing very well and for him to say that is pretty awesome in my book.  In about two weeks we will see just how much of a kick ass job this Vitamin C is doing and I can't wait to find out.  This is my plan to proceed:  If the scan looks good but there is still room for improvement I am going to try to get the C's for at least 2-3 more months depending on what my ND says.  If it looks the same (or worse) then I will figure it out then and try to go see a healing guru in another country :) yep.

The garden at dads is growing so fast and so abundantly that I have been too busy to get up there enough to harvest much of it.  I really wanted to get much more from the garden this summer but I also did not anticipate being in treatment 4 times a week either.  At least dad has a big freezer to store some veggies in for the winter.

Looks like another busy couple of weeks lined up but that is what keeps life interesting.  I am starting to get over the shaky stuff a bit more and with all of this extended summer weather (90's in Portland this next week!) I am going to try to make some time to get out for some late summer hiking up in the mountains.  That is one thing I didn't get enough of this year.  I can't believe I have only been camping one time! Dang!

Your generosity is FAR OUT!
I wanted to give a shout out to everyone out there who has been donating to my therapy and well being.  I literally could not be doing this well without your help.  You all have no idea just how much this helps and means to my health and I am in great gratitude every minute of every day and every time someone tells me that I am looking great I think of all of you and how it is because of your generosity (and some positive mental attitude) that they are saying these words to me.  Please don't ever think for one minute that I take any of it for granted and I am forever thankful.

Thank you!

If you would like to contribute, you may donate directly into my account at my clinic by contacting them at:
The Center for Traditional Medicine
503.636.2734

Or by PayPal at:
laura.york71@gmail.com

Or visit my Amazon wish list which includes supplements and vitamins etc. at:
http://amzn.com/w/3A2XN4O4FP6U1



Monday, August 5, 2013

Tremors, Gardens, Camping & Vitamin C

Things have been going pretty darn good lately thanks to all of you!!!

High C IV
The high dose vitamin C has been so extremely helpful! I have not had quite as severe side effects as I had during my last chemo back in 2010-11.  I have been no where near as forgetful (I still have my moments), have only gotten sick one time and have had much less nausea, have only had about four or five really bad days, my hair has been growing about an inch every month, and my skin is very healthy looking.  The friends and family who have seen me at this point in chemo back in 2010 and who have seen me recently can definitely tell a major difference.  Let's just say that I have no complaints at all, even though there are a few issues going on...

My hands have been so super shaky lately.  At first I though it was the thyroid pill my ND has me on so we adjusted it a few times and now I'm down to one pill cut in half twice daily.  We also took a break on the DCA and liquid tributyrate to make sure I am not deficient in my B vits (plus doc says its good to have a break from these from time to time, I am guessing to kind of "reset" your body).  So far this has not helped either but it may take a few days to see.  Next he is wanting me to get a nutritive push, similar to the nutritional IV's I used to get but concentrated (no saline) and "pushed" by hand with a huge syringe into my IV line (slowly of course).  I got one today and I smell like the vitamin store now, however I do feel much better, but still shaky hands.  He thinks I may be just needing more nutrients and since I get so much liquid pumped into my body 4 times a week that it is diluting what nutrients I do have.  It will take a few days to figure it all out but we are determined to get to the bottom of it.  It is kinda cramping my iPhoto skills.  Shaky hands make for blurry photos...boo!  The other thing it is doing is making it a pain in the ass to type and more of a pain in the ass to text.  Geez!  I'm a big texter (it's actually my main form of communication) and it has been super frustrating for me.  I do a lot with my phone too like check my email, entertain myself when I'm in an IV for 3-4 hours, etc and this shaky bit has been irritating to say the least.
My Hooties who keep my liver loved at night

I got to go camping the other day with some friends.  It. Was. Heaven!  I used to be that girl who went camping every single weekend and more often if I could manage it.  I was hiking, climbing, skiing, camping, or just doing recon for another trip or scoping out new places to go.  I haven't been camping since last July when my mom and I went opal digging at Juniper Ridge in Southern Oregon (awesome by the way!) so this was a treat for me!  I couldn't wait to retrieve my camping gear from my storage closet down the hall!  Before I got diagnosed, back when I had a job and money, I had enough foresight and determination to replace my aging and well loved tent, sleeping pad and backpack.  Oh man, it was like Christmas!  I had only used my new gear once or twice after I purchased it (cause my ex and I always used the Westy when we camped) and when I went to set it up I just kept gawking at it and at how cool it was.  My chemo brain had completely forgotten what it even looked like, and I was absolutely befuddled and astounded at all of the adjustments on my killer backpack.  Once everything was all set up I realized my tent matched my sleeping bag...hey, just cause you're camping "roughing it" doesn't mean you can't be fashionable too :)  I floated around on a lake near Mt Hood all day (with lots of sunscreen), had wonderful conversation with friends new and old, ate a ton of delicious food, sat by a campfire, and slept under the stars like a baby and didn't even wake up one single time all night long.  It was a good, good time.  I hope I feel well enough to get back out at least one more time before this nice weather is gone.
The view from inside my tent

My dad and I planted a HUGE garden together this year.  The only downfall is that I usually feel too tired/shaky/crappy to make the hour drive north to his house.  And I am in appointments 4 days every week so it also makes it difficult to come see me too...unless one wants to hang out in an IV for a few hours or so.  But the point is that we are getting tons of veggies out of it and it couldn't be more awesome!  I just wish I could spend more time actually in the garden.  I love weeding and tending to the plants and eating them right out of the garden, yum!

I've been sleeping a lot lately and I mean a LOT.  It has been feeling incredibly good too.   I have been fatigued but not in a completely incapacitated way like back when I had radiation.  I can at least be in the kitchen for a while now and do my own laundry, clean, take care of basics etc.  The fatigue I have is pretty consistent and severe but I can make it to my appointments by 9am (that's great for me) and if I set my mind to it, whatever it is, I can usually make it happen.  Sometimes it takes a while but it will eventually happen.  I have a huge mobile making project that is warranting my attention these days. I finally got things organized enough to feel like I have some room to be creative.  In other words I re-arranged my furniture again...see if I set my mind to it I can get it done :)  My kitty girl still thinks I'm crazy but it keeps it interesting for her and her indoor lifestyle.  I have lots of great ideas brewing for crafts too.  I am assuming that I will have more enthusiasm for those things once the days start getting shorter and less deliciously sunny and warm.


Just waiting to be turned into something cool
My next CT scan is scheduled for sometime in the middle of September.  At that point it will have been three months since I got the scan that showed cancer in lymphs, lung, pelvis as well as in my liver...this is where we will see just how much cancer booty we have assassinated.  My guess it that it will be spotless  or nearly so :)  Yep, this is what I am going to manifest!  Will you help me by sending my your good thoughts and sparkly ju-ju and let's manifest some spotless scans!  Woot! Woot!




Seriously though, the vitamin C IV's have proven to be astoundingly helpful with chemo side effects and doc says that it also makes the cancer more susceptible to the chemotherapy making it more effective.  Not only that I can literally see, smell, and feel the difference in my body as compared to last chemo in 2010.  It is amazing stuff and I just can't understand why our lame insurance wont cover such a simple thing that can do so much good!  The IV's are $175 each and I get three every week so in comparison to chemo it is cheap but when insurance does not cover it the expense turns into $2100/mo.  The only reason I am as healthy as I am right now is because of YOU!  Thank you so much for the vitamin C IV's!!  The donations you have made is what makes it possible for me to get these lifesavers and I want you all to know that I am forever in deepest gratitude for your generous and gracious gifts!  I feel the love every single day and am so thankful and lucky to be as healthy as I am and to have such wonderful friends and family like you all to give me strength and shine that light.  You all rock!!
at the CTM

My friend Tiffany has organized this fundraiser to help with vitamin C IV's.  Anything is most appreciated, even if it is only $1!  Every single little bit helps and is one more drop of golden goodness in my IV to keep me healthy and kick some cancer booty!
Here is the link :)

Or if you like you can contact my clinic directly at The Center for Traditional Medicine  503-636-2734 and they can add money to my account there with a debit/credit card or personal check.  The people there are quite lovely, if you call on a Mon/Wed/Fri then make sure to tell them to say "hello" to me since I will be in the IV suite :)

I hope you are all enjoying this beautiful summer and are all safe, happy, healthy and full of life!

Oh yeah,

CANCER CAN SUCK IT!


Monday, July 22, 2013

Life is good!

Hello out there!
I hope you all have been enjoying your summer and getting lots and lots of fresh air and fresh fruit and veggies.  Summers in the PNW are just about the best you can get really.  So many things to do and everyone is smiling.  I haven't really been able to get out to do too much but the things that I have done were all super fun.  I am hoping to get up in the mountains for a hike soon while this weather is still so beautiful and maybe even take a lil' dip in an alpine lake somewhere and watch the wind in the trees.

I have been getting accessed in my port four times each week (that's a lot) and it is getting a little sore there.  A little Arnica oil before bed and first thing in the morning (not to mention a LOT of Arnica gel on the weekends) has really been helping it to not be quite as sore and tender and I am thankful for that.  Sometimes just a simple hug can cause a lot of discomfort and as a result I have learned to hug accordingly. I have been doing chemotherapy again, I have two weeks on and one week off.  I am getting the same chemo (gemzar and cisplatin) and in the same dose as where I left off back in November of 2011.  So far it hasn't been too bad.  I definitely have no complaints.  I believe the Vitamin C IV's have been helping tremendously!  I have only driven the porcelain bus once and my hair actually has grown an inch in the last month (DANG!).  However, my blood counts are waaay low.  I pretty much don't even have platelets anymore and at last check a week ago my WBC and RBC (along with some other things) are nearly non-existant BUT I didn't have to get chemo this last week and I have been eating well so I am hoping that on next check this coming Thursday things will be looking better.  I have felt tremendously tired lately though.  Not that I feel bad or anything mostly just like I want to lay down and take a nap, and I usually do :)  There have only been one or two really bad days and only one or two nights that I have not been able to sleep one wink.  I have not had an abundance of energy either, just enough to get done what needs to get done and sometimes not quite even that much, but with the help of my friends, family and neighbors I have been getting by just fine.

I went to my dad's house to harvest garden bounty yesterday and wow!  I came home with two huge paper bags stuffed full of lacinato kale, a giant bag full of carrots and yellow squash, a huge bunch of basil, cucumbers, an onion, and green beans.  In another week or two we will be up to our eyeballs in all kinds of tomatoes, more beans, onions, leeks, peppers and squash.  It wont be a problem at all making dinner this week with all these awesome homegrown veggies!



Things have been pretty mellow.  I got to see a bestie that I haven't seen in a couple of years and we had a beautiful time and got to catch up too.  The sun has been shining, the birds have been singing, the flowers have been blooming and the stars twinkling in the night.  Life has been good and I have absolutely no complaints at all.



Monday, July 1, 2013

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!



Wednesday, June 5, 2013

Please spread the word and share this far and wide!

Thank you so much!

My friend has set up a donation account to help me cover medical expenses in this new phase of my treatment which is high dose Vitamin C IV's.  Any assistance at all is very much appreciated in deepest gratitude.

I am off to go get my PET scan.

Many Healthy Blessings to you ALL!!

Here is the link to the YOU CARING ONLINE FUNDRAISER


Monday, June 3, 2013

An update, a decision, and a plea

What a year its been!

It's been weird, emotional, exciting, crazy, adventurous, painful-really painful, scary, uncertain, ambiguous, frightening, love filled, family and friend filled, uncomfortable and downright draining at times.  I have bonded with my couch and my kitty and my digital converter (hey, almost free TV).  I have seen the inside of my eyelids more times than I care to count but only in the daytime and never in the middle of the night.  I have been radiated and medicated and sedated out of my mind.  I feel like I have aged 10 years in the last 6 months.  I struggle to keep my weight above 110,  struggle with my appetite on a daily basis, and struggle with the energy to prepare meals even one time each day.

During the hardest times my thoughts have wandered into the darkest corners of my mind and I found myself thinking that I have nearly had enough.  Extended periods of pain and weakness from malnutrition made me wonder how I could even still be alive.  I often wondered how I could be in so much pain and not have passed out or passed away yet.  I came dangerously close to calling it quits and it scared my shitless!

On a much lighter note I have been feeling pretty fabulous (for me that means my pain is about a 5 out of 10) for the past three days.  I think it is because I have had more of an appetite and I have been eating more (more energy) for the last few days.  I have also been able to take my vitamins and supplements again three times a day which is a giant accomplishment for me!  I still struggle but at least I have more energy to prepare food which gives me even more energy for other things, like healing and kicking some cancer booty.

I think that a lot of people don't really understand just how hard these past months have been but I think that is partly my fault.  I try not to post too much about how shitty things are because quite frankly I choose not to focus on it myself.  When anyone asks me "how are you doing/feeling?" the first thing out of my mouth will be "I'm doing great!" if I feel pretty good, or "I'm doing good." if I feel crappy.  What I wont say is "I feel like shit and my this or that hurts and I'm hungry but I don't want to eat, and I feel like I'm going to puke on you, I haven't gone #2 in days and I feel like a bomb went off in my liver and someone stuffed rocks in it."
There is too much to be grateful for to spend my time and energy focusing on everything that is bad or wrong.  The way I see it is that I am alive and that is a good thing!  What you focus on expands and I am determined to focus on all that is good.  Just like I am focusing on this new stuff they found outside of my liver as being just some swelling cause hey, I've pretty much been nuked and it is definitely not unreasonable.  Yep, just swelling!

This is a good time to transition into the real reason I am writing this post.

After a much needed visit with my friend this weekend my perspective has been changed on my next step with regards to treatment.

After I found out that my high dose vitamin C IV's would cost $175 each my heart sank.  I thought that there was no way that this could ever happen (I still worry) because I am supposed to get three each week making that $525/week or $2100 each month.  SCARY!!!
I kept looking at this as a whole ball of wax type situation, all or nothing and got scared.  I really don't feel positively about the chemotherapy they want me to get again.  I have a very bad feeling about it actually as do many of my friends and family.  BUT my friend explained to me that I should approach this one step at a time and try to raise as much money as possible and get as many vitamin C IV's as I can with what I got.  In other words I was too focused on my outcome and not giving the process enough time to unfold or to trust in it.  So this is what I am doing... I am going to trust in the process and quit thinking about the future so much.  After all I have been taking it one day at a time anyway and why does this have to be any different?

Obviously this is something that I cannot do alone and once again I am asking for any help at all large or small it does not matter and is ALWAYS ACCEPTED WITH DEEP GRATITUDE.  If anyone would like to help out in covering the cost of my treatment please feel free to contact my doctors office directly.  They are more than happy to accept payment over the phone and the donation will be credited directly to my account there, just exactly where it needs to be.  Plus you will also be able to get a receipt :)

Here is their contact information:
The Center for Traditional Medicine
503-636-2734

Big BIG LOVE!!!

My time is not even close to being over on this earth.  I am just getting saddled up for round two.  I am more experienced at this game now and cancer doesn't even stand a chance this time.  Apparently it still hasn't figured out who it is trying to mess with yet :)

Monday, May 20, 2013

Never a dull moment in the life of The Cancer Assassin!

My mom came down to Portland on Friday for what we both thought would be a pretty uneventful visit with my oncologist to discuss the results of the CT scan I had done last Wednesday.  I knew that the left lobe of my liver looked pretty badly beaten up with battle scars from the last chemo onslaught and I also knew that there were new tumors in there too.  I expected that it would be pretty much the same as the scan I had done not even a month ago and that this was all just procedural so that we could begin the next radiation treatment within the coming weeks.  What I did not expect was bad news, but bad news is what we got.
6 miles in on Eagle Creek

Apparently my cancer has now metastasized into what they think to be some nearby lymph glands.  The trouble right now is my oncologist was really sketchy on saying exactly what this new mass was, although he kept insisting it was most likely a lymph gland.  This new mass is pushing on my IVC (inferior vena cava), my portal vein, my diaphragm, my spleen, my stomach and everything else in that vicinity making for some really uncomfortable times on occasion and on other occasions making for a trip to the medicine cabinet for morphine.

The CT report describes this new mass as a "low-attenuation lesion" which means that it is not solid enough so that light cannot pass through it...in other words the higher the attenuation the more solid the mass is, so I am going to milk that statement as good news.  At least it is not solid enough so that no light passes through...  The report also suggested that the new swollen mass could be a result of the compression of the tumors on my arteries and such...

Basically what it boils down to at this point is this:

I got bad and ambiguous news on a Friday afternoon leaving me to sit with my concerns, thoughts, worries, fears, and questions all weekend long.  No one really knows anything yet and my next step is to contact my radiologist and go over the scan and reports with him.  Radiologists are more accustomed to reading and looking at scan images so it was suggested to me that instead of going over my scan with my oncologist I should be going over it with a radiologist and that is exactly what I am going to do before I make any decisions.  I also have a call in to my Natural Doctor and will be speaking with him as well about my options.  Oncologist is recommending more chemo again.  I am not sold on that idea.  I know from experience that although chemo kills cancer cells it also kills lots and lots of healthy cells too not to mention the horrid side effects that come along with it.  I am talking quality of life here.  I think that this round I may just stick to natural medicine.

Tumors are not the problem here.  The tumors are the symptom of my cancer.  We can use chemotherapy OR we could use natural methods all day long killing tumors but until the real underlying problem that is causing the tumors to grow is fixed and the whole body is healed the tumors will just keep coming back.  It is time to get down to the nitty gritty again and be insanely vigilant and healthy.  It may just be time for something drastic.  I KNOW that it is time for a vacation.

This new mass appeared in the short time of one month! This is scary to me!  How much time do I have to peruse the choices of this new decision I must make?

A friend asked me this weekend "What am I going to do?"  My reply was "I really don't have any choices."  The only thing my insurance will cover is more chemotherapy.  It wont cover any natural therapies like high dose vitamin C therapy which is natural chemotherapy and doesn't have any negative side effects and kills cancer every bit as well as chemo does.  My only choices are a) get chemotherapy or b) do nothing.  I simply cannot afford to pay for natural therapies, they are not cheap. But I don't want to get more chemo and live the rest of my days being so sick from treatment I cannot enjoy my life.

I just wished that I would fall asleep last night and wake up to realize it was only a dream or that maybe it would just vanish as mysteriously and quickly as it appeared.  I wonder that if I stuck my head so far in the sand all this cancer crap would just disappear, you know "out of sight, out of mind".  I don't want to sit and worry about it all so I have been trying not to think about it.  What is the use in getting all worked up over something that I really don't even have all of the information about just yet.  It wont do any good and will just stress me out.

It's crunch time.

Monday, April 8, 2013

What it's like

WOW!

I did not expect to be "gone" for so long.  It has been over two months since my last post and believe me it is not because I haven't wanted to post.  I just simply haven't even been able to.

I have had the craziest experience the past two months as a result of the first (yes, I still have to get another treatment) of my Y-90 direct radiation treatment.  I have to be completely honest and say that so far out of everything this has been the hardest thing I have had to do since diagnosis.  Trust me, chemo was no picnic at all and it sucked just as much, but it was different.  Chemo snuck up on me and slowly created problem/symptom after problem/symptom over time, many of which I still deal with to this day.  It slowly ate away at me and my body, but radiation (at least the type I had) just bitch slapped me hard, caused intensive pain (I'm talking a definite 10 here folks) not even an hour after the procedure ended and continued for nearly two entire months!  As a result I have been so out of it that I actually could not function for about a month and a half.

No one can understand what it is like to have cancer, especially terminal cancer,  or to have to go through treatments (or not),  or to have to make the decision as to what to do in order to live the longest amount of time possible,  or just how much pain one can possibly endure...there are so many circumstances in life that others cannot understand unless they too have gone through it too.

THIS is why I think it is so important to share information and experiences.  To the best of my ability, I am going to try to chronicle the experience I have had since Valentines Day, the day I became radioactive.  Mostly I want to explain to everyone exactly what happened as a result of the Y-90 procedure I had done on February 14.  The reason I feel this is so important is because the reaction I had to the procedure was not a typical reaction.  I was informed (and research also showed) that most patients usually experience flu like symptoms about 3-5 days after the procedure that usually last around a week or so.  Not so bad I though....but then again from past experience from other treatments I knew that my rule of thumb is to take what they (the doctors) tell you and expect it to actually be about 3-4 times worse than what they say it will be like.  That has been my experience so far at least.  So I figured that I would most likely be feeling pretty icky and flu like for about 3 weeks.  Well, lets just say that is NOT what happened by a long shot.  I also have to let you know that sometimes this description could get a little too graphic for some so if you are too sensitive to TMI then you might want to skim some parts.

On Valentines Day my aunt and mom came down from WA to take me in to get Y-90.  We got there at 6:30 and after getting set up with an IV and some blood tests I was in the now familiar operation room with all kinds of crazy gadgets and instruments.  They transferred me from the gurney to the operation table and started getting me all settled in with blankets and oxygen while other people placed a bunch of sticky sensor things to which they would connect wires to monitor or view something.  I always joke around with them asking my usual "so who is in charge of mixing my cocktails today?" You always gotta get in good with your anesthesiologist :)  Many of them remembered me from my angiogram a couple of weeks prior and I am thankful that they are all very friendly and willing to listen to me nervously ramble and tell bad jokes.  They always warn you before they put you out saying something like "count back from 100" or "imagine your favorite place to be".  The next thing I know I am awake, still on the table with 3 or 4 people milling around while a guy is placing pressure (I mean really leaning into it too) on my groin which is the place they accessed my femoral artery.  The procedure is to run a catheter into my femoral artery and up into my liver to deliver radioactive beads directly into the large tumors.
Waking up
I get wheeled back into my room where I slowly shake off the sedation and access my situation.  They delivered blueberries, carrots, water and cottage cheese which I was elated to eat.  It tasted like heaven after nearly 12 hours without any food or water.  My mom and aunt had been killing time while I was in my operation and had now returned bearing gifts, smiles, kisses and hugs.  We leave and for the rest of the day I actually don't feel too terrible.  I think this lasted for about 12 more hours because the next thing I remember is about a two weeks later when I had to go to the hospital and get a CT scan because I was in so much pain and they were trying to figure out why.  I don't remember going to the hospital to get the scan, I don't remember even getting the scan.  Apparently my mom and gramma were there with me but I don't remember that either.  I do remember having lunch that day though but that is about it.

I was in so much pain from my procedure that I was taking 4mg of dilaudid every 3 hours!  This went on for about a month.  Dilaudid is the strongest pain medication they can prescribe in a pill.  The only way they could have given me something stronger is to put me in the hospital and give me an IV.  The dilaudid made me severely nauseous so I took lorazepam and zofran to keep from throwing up as much.  The lorazepam in combination with the dilaudid made me a zombie.  I literally don't remember much of February and about the first two weeks of March.  I know I was somewhat functioning because I have pictures of me visiting with friends and family who came to visit BUT I don't remember much of it at all.  It is like being drunk one night and the next day your friend tells you something that you did the night before and you are horrified that not only you did something embarrassing but that you also completely lost that time and you will never remember it or get it back again.  It is a horrible feeling.

At first the radiation made me feel like I had a really bad sunburn inside my body.  The lining of my stomach, my esophagus, my mouth, and my tongue actually peeled off and shed out through my mouth.  It was disgusting and it caused an enormous amount of nausea.  All of the skin on my tongue actually peeled off.  If I put my finger in my mouth and rubbed my cheeks and gums there would be nothing but a gob of skin on my finger.  My stomach and liver felt like they were on fire.  It felt like two nuclear reactors melting down in my liver.  The pain was so bad that I could not take enough pills to even make it somewhat bearable.  I am no wimp either when it comes to pain.  My liver on a good day is at about a 3 or 4 out of a 1-10 pain scale so for me 3-5 is normal.  One weekend sometime around the middle of March I started to feel a little better so I thought I would stop taking the dilaudid and try to manage my pain with oxycodone instead.  Big mistake!  I spent the twelve hours from 6pm until 6am in the most excruciating pain I had ever had in my entire life.  I did not know what to do. I had taken oxy so I could not take dilaudid as they could cause me to stop breathing (they don't mix).  I was basically screwed until enough time had gone by so that I could take another dilaudid.  I didn't want to call my mom in the middle of the night and get her all worried and I knew that if I went to the emergency room they would not be able to do anything better for me and on top of that I would also be in a cold uncomfortable hospital room.  I put an emergency call into my surgical radiologist who did the procedure.  He called back and was absolutely stumped.  He had no idea why I would still be in so much pain and said that short of admitting me to the hospital and sedating me to the point of barely breathing there was nothing that he could do for me.  He also tried to cheer me up a little by saying that the pain is most likely a good thing as it is killing cancer.  Well that was all fine and great but I felt like it was killing me too.
Luckily by about 6 hours later the pain had become manageable (to about a 6 on the pain scale) and I was scheduled to get an endoscopy the next day to make sure that they weren't overlooking something as simple as an ulcer.  The results came back from the endoscopy and everything was totally normal and no one still had any idea as to why I was in so much pain.
My grandmama and me
All of the pain meds I was taking ended up having some very undesirable side effects.  Anyone who has ever had to take pain killers for an extended period of time knows that they will constipate you like no ones business.  Now imagine taking heavy doses of pain killers for about 45 days.  I literally did not go #2 for 28 days!!!  The pain from the radiation was made infinitely worse by the pressure and discomfort caused from not having a bowel movement in almost a month.  I was literally on the sofa or in the recliner for about 50 days.  I had zero appetite but forced myself to eat if I could.  I lived on yogurt and boxes of organic butternut squash soup for weeks on end.  It hurt to do anything at all, to stand, to sit, to talk, to read and even to type.  Loud noises and multiple things going on at once sent me into a panic attack.  I couldn't drive anywhere. I had to rely on friends and family to take complete care of me.  I was literally helpless often not even having the energy to go to the bathroom or bathe.

It was only by accident that my pain meds got changed.  My insurance did not cover dilaudid and I had been paying for it for weeks.  I received a call from a nurse at my clinic telling me that my insurance would cover another pain med that was time release morphine and if I wanted to switch I could.  At first I was afraid that it wouldn't work as well.  I though that if insurance covered it, it must not be as good.  I decided to try it anyway.  I only needed to take one pill every 12 hours and I also got to take oxycodone for "breakthrough pain".  I gave it a try and boy am I ever glad I did.  It actually worked much better!  After about two weeks of taking this I got to the point about a week ago where I stopped taking them completely! Yay!!  I now am able to get by with taking an occasional oxycodone to manage my pain.  Which means I also get to be more independent and take myself to my appointments or to get groceries without having to rely on others to drive me.  It has been a slow process.  I have thrown up so much that my stomach and entire abdomen is extremely sensitive to touch or motion.  I have been trying to get out and go for a walk every day to get moving again.  I have even gotten on my rebounder one day for a little workout.  I get tired quickly though.  I only have a span of about 3-5 hours before I really need to lay down.

The surgical oncologist is ready to get me back in to do the other side (the left side) of my liver soon.  I am expecting to be back for round two in a week or so.  I think that I might be prepared a little better this time though so that maybe it wont put me down as hard or as long as it did the last time.  The left lobe of my liver is only about a third of the size as the right side due to it containing so much dead cancer from last time with little healthy liver left.  Since it is so small I am hoping it wont hurt as much :)

I have been very absent in the world of social media and very absent in replying to emails from followers.  Please know that I haven't been meaning to ignore any of you at all and that you are all on my mind.  I will try to reply as soon as I can.  It is just that I have not had the energy, mind power or body power to do so.  Many of you have asked me what my advice to those of you out there who have been diagnosed with CC would be.  Let me just say that I am in no way qualified to be able to recommend a doctor to you by any means but with that in mind let me also say that it is extremely important to find a doctor that you feel you can communicate with and who is actually working hard for you.  Don't settle for less, this is your life you are talking about here!  I also recommend that everyone battling cancer should seek out the professional opinion of a NATURAL DOCTOR in addition to a conventional oncologist etc.  And the number one most important piece of advice that I can give to everyone is this.  YOU ARE WHAT YOU EAT! It is that simple.  You simply must eat healthy food in order to provide your body with the tools it needs to heal itself and keep you healthy if you are going through treatments.  This one is not compromisable.  Lots and lots of a variety of vegetables including dark leafy greens.

So to make a long story even longer, this is it.  This is roughly what my world has been like for the last two months.  I really just wanted to share so that people out there like friends and family, those of you who might be thinking about getting Y-90 or those who are just plain old curious.  Information sharing is one of the most important things cancer patients can do for each other.  Knowledge is power!

In the meantime, stay healthy, don't stress to much about the future and try to be thankful for this moment because it really is all you ever have.

Oxxo!!

Friday, February 1, 2013

The Low Down

It is turning into whirlwind city again.  BUT not enough to cause the magnitude of panic that hit me back in March of 2010 though and that is a good, good thing :)

I am a seasoned veteran now.  After nearly 2 years of chemo I am pretty sure I can handle what is coming my way in about a week or so.  I hope...

I should find out today exactly what day we are going to do this procedure.  I had my angiogram mapping procedure done on Tuesday.  They ran a catheter into my femoral artery in my groin and mapped out all of my veins, the tumors, how the tumors were supplied with blood, how many cc's my liver could hold, and just the general anatomy of my liver etc.  Looks like once again I am a bit unique. Apparently most peoples livers are supplied by one of three main arteries (I have totally forgotten the names something like duodenal, mesenteric, something gastric sounding) and I happen to be one of those people who are not like the others.  1 out of every 1000 people have a liver that gets supplied from a different artery (not bad or good, just different) and I am that 1.  I am guessing that if I ever became a candidate for a liver transplant it might be a bit hard to find a donor due to this....just a guess.

During the procedure they placed 5 coils (I was told they look like tiny caterpillars or pipe cleaners) that  block off certain veins supplying blood to the right and left lobes of my liver.  These coils will never come out.  They are made of platinum.  Who knows, I might just set off the detector in the airport now. These were placed in these positions in order to block off one side of my liver while they inject radiation into the other side.  They are planning to hit the left lobe first, then approximately a month later they are going back to hit the right side.  Apparently there are lots and lots of veins that supply the gut and liver and I was told that it is extremely hard to kill the blood supply to the gut.  So I am told that these platinum coils that never come out will never be a problem.  Its like bling in my insides! Kinda cool and a little freaky at the same time.

I have been a little sore from the mapping procedure.  They went in right in the crease of my thigh (imagine bikini line crease) and the spot where they went in is tender plus the leg and up into my gut just a little bit are achy.  I was told by my nurse friends that this is normal.  Needless to say I am not very comfortable being up on my feet for a length of time and I really don't like to walk too far or be in my car for longer than possible.  It makes things achier.  Don't get me wrong, it isn't painful really, just achy in a strange way that just feels different from anything I have ever felt before...but then again, except for a biopsy and port placement I have never had a surgery so this is all new to me.  On the plus side the incision is only about 1/4 inch long and it is barely visible :) Waay better than the port scar.  It is a little unnerving though having someone tell you not to cough too hard or lift anything heavy (over 5 lbs) because you might bleed out...can you say paranoia?!

I promised an updated list of supplements....I finally got them all together and organized.  I am waiting on the PSK (he has one that is supposed to be far superior in absorption on order) and butyrate to come in and those will also be added to this mix.  This is what I've got so far.  I will also include the names of the companies that make them if you are interested.  My ND and I went through all of my supplements and as much as I would like to find cheaper ones out there, he insists that these are the superior products and I should stick to these.  He did say that the Eclectic Institute Milk Thistle can be a substitute for the milk thistle listed here.  So far this is the only substitute that has been acceptable.  I think this may be different for preventative treatment vs therapeutic treatment.  Right now I need the GOOD stuff.
Here is what they look like :) Curamed is missing


Supplement list:

Resveratrol Extra by pure Encapsulations   1tab/3xday
COQ10 by Integrative Therapeutics  1chew/3xday
Ecomer Shark Liver Oil  500mg by Scandinavian Formulas   2tab/3xday
Ultra Potent C, by Metagenics  1 tab daily
Vit D3 & K2 liposomal spray by Protocol  2 sprays/day
Milk Thistle Extract 250mg by Vital Nutrients  1tab/3xday
EGCG Green Tea Extract 275mg by Vital Nutrients  2tab/3xday
Oncotonin by Cardiovascular Research  2 tab evenings
Artemisinin by Allergy Research Group  2 tab/3xday
Liver Support by Vital Nutrients  1 tab/3xday
Detox Formula by Vital Nutrients  1 tab/3xday
Benfotiamine 150mg by Doctor's Best  1tab/3xday
Pure Lean Nutrients by pure Encapsulations  1tab/3xday
Curamed by Terry Naturally, 2tab/3xday
Urea 28 grams daily in pomegranate juice
LDN 1.25mg 1 tab in evening
2 Quarts of green tea daily
PSK (on order)
butyrate (on order)

I will also be starting DCA after I am safely out of my last radiation treatment.
breakfast

I am also on a strict Ketogenic diet now.  NO sugar of any kind (no fruit, honey, etc) and NO carbs (grains, potatoes, etc.) I try to stay under 30g of carbs every day.  I have to say that after all of the other dietary changes I have done in the past three years this one has been the easiest for some reason.  I have really been enjoying my diet lately.  Truthfully the only time I have missed sugar at all is in my morning Earl Grey (I've been using stevia lately).  So far it's been a piece of cake...sugarless, carb-less cake :)

Thursday, January 24, 2013

CANCER CAN SUCK IT!

I think it is safe to say that anyone who has ever been diagnosed with cancer is always worried about one thing.  No matter how hard you try not to think about it, somehow it always creeps back into those dark places in your mind.  You know those places, the ones where you stick all of those unpleasant things that you prefer not to think about so much but are still important enough to file away.  This one worry is made even more intense if you have been able to wrestle it into submission with either one of all the combinations of chemo, radiation, natural therapies, supplements, positive attitudes, green smoothies, coffee enemas, acupuncture, acutonics, acupressure, shamanic healing, praying, making sacrifices, or performing rituals.  What is that one lingering fear, the one that never, ever, EVER goes away no matter how clean your last scan was or no matter how good your blood counts look?  For this Cancer Assassin it is the fear of it coming back.

One of my biggest fears came true last Friday.

My mom and my aunt came down to Portland so that they could go with me to my appointment with the oncologist. We to hear the official results of the CT scan that I had done two days prior.  I think all of my friends and family expected the scan to be clean.  They have been clean for me since August 2011, just a short 17 months after my original diagnosis which baffled everyone.  Upon diagnosis my liver was literally COVERED in tumors.  Some were clusters of smaller tumors spattered throughout my entire liver, others were 3-5cm and another one was a whopping 9cm!  Everyone wondered how I was even standing in front of them.  My ALP (alkaline phosphatase) was off the charts, however my CA19-9 was never elevated.  Needless to say 17 months later my scans (PET) showed no living tumors, they were all dead!  This inactivity of cancerous growth lasted until my most recent scan done on Jan 16.  The prior scan done back in July was also clean.  In 6 months I had grown a tumor that looked a lot like a snowman, two tumors touching, both approx 3cm in diameter.  This is the one that they are going to perform Y-90 direct radiation treatment on (radioembolization) in the next couple of weeks.

This Y-90 treatment is the same treatment that I went in to see a doctor about on August of 2011.  The same doctor that I am seeing now actually.  The same doctor that performed the PET that said "complete remission" although no actual doctor ever said those words to me.  I guess that scan reports are not necessarily the gospel.

I call it the "black hole"
Anyway, my recent scan was not clean.  The cancer is growing back and in a brand new spot! At least it is still in my liver and hasn't migrated out to any other organs yet.  They say the next typical place for my type of CC to go is in the lungs....  I knew something was up.  I was just in too much pain and discomfort recently to feel like I was ok.  I kept trying to tell myself that the pain was just the "feeling of healing" but my mind kept wandering to those dark places where I kept my fear.

Now, let me just say that yes, it sucks.  I don't really know how I feel honestly.  I am not afraid really, not so much of the cancer anyway, actually I am more afraid of having to get more chemotherapy.  I know how bad it is for me.  It kills so many good, healthy cells and not enough of the 'confused' ones.  I think that it is almost worse in a way because I know exactly what to expect from chemo.  I will feel sick all the time.  I will walk around taking note of all of the places that I could vomit if I needed to.  I will have to pull my car to the side of the road from time to time to throw up.  There will be angry, itchy, hot rashes on my face making me look like I am going through puberty all over again.  There will be neuropathy in my arms, legs, hands and feet (feels like needles and pins when your not kind of numb feeling).  There will be bone pain that feels like growing pains multiplied by 1000.  I will lose my  memory, concentration, word recognition and ability to make even the smallest of decisions like soup or salad.  Small decisions such as these literally sent me into a panic attack last time, freaky huh?  More chemo induced menopause complete with hot flashes so severe that I just want to peel my skin off.  Sleepless nights jacked up on prednisone, the chemo buzz you get after your last treatment from all of the toxins off gassing, and my favorite, constipation from all of the pharmaceuticals you take to control all of the side effects from the chemo...

In a way I suppose that knowing what to expect is also good.  THIS time I am going to try to prevent some of these nasty side effects because now I know, right?  Right. :)

It is weird.  When I was first diagnosed I found my "comfortable" place with my "terminal illness" diagnosis.  As I have always said "I make my own statistics" and labels don't apply to me (or you!).  After I "killed" so much cancer and had a clean scan I was skeptical.  I was happy, but I was also skeptical.  I know that cancer is sneaky.  It doesn't care that your scan was clean.  It just wants to live and grow and grow some more.  Like I said, "confused" cells.  I don't hate my cancer.  To me those cells are as much a part of my body as my nose.  They somehow, somewhere along the line got misdirected and confused about what they are supposed to do and how to grow sustainably (hmm...sound familiar?).  I wish I could just reach into my liver and cup my hand around my tumor and massage it and give it love and guidance.  I actually do this in my mind every day.

Back to sneaky cells....Having cancer can make one very skeptical of placing too much hope in one thing (like a clean scan).  It is like it almost dulls all the senses in a way, at least for me it did.  I always take my good health news now with a grain of salt.  I am very appreciative of good news and still very happy about it.  BUT I feel like I can never ever let my guard down, I have to remain ever vigilant and in tune with my body.  I felt like I was doing so much before but now I feel like it obviously wasn't enough and I still need to do more...

Once again it all comes back to money.
I only really have two choices right now.  1. I do chemo and radiation and continue with my supplements and the multiple other things I do naturally to keep my body as healthy as I can or 2. I don't get chemo and just continue doing what I have been doing which obviously isn't working 100%

It costs sooo much money to even see a new naturopath and get on a new type of natural therapy such as mistletoe extract or enzyme therapy.  It is nearly $20K for the Gerson clinic in Mexico and then you also have to redesign your entire lifestyle after that and have someone to help you out 24-7 which is impossible really (unless you have a partner or spouse who you live with that is willing).  My only option really is chemo and radiation.  This new tumor is in a bad spot, pushing up on my stomach making things very uncomfortable.  IF it grows then we could be looking at even more trouble with blockages etc.  My oncologist actually told me that people with blockages usually don't fare well....I have been incredibly lucky so far to not have any blockages.  If they saw some small tumors scattered around I wouldn't be feeling so drawn to the toxic treatments.  But like last time I feel that this one is a bad mofo and needs to be taken down before it has a chance to do major damage.

Now if you have been on my blog long enough you know that I really didn't want to do any more chemo.  Not just because of the immediate side effects but because of the long term ones like kidney failure and secondary cancers.  Kidney failure is NOT on my agenda.  I will go out in a pain riddled blaze of glory somewhere beautiful before I will ever be chained to a piece of equipment for the rest of my life.  Im selfish like that I guess.  The trick is to not get enough chemo to damage the kidneys beyond repair but that is a fine line and yet another fear to place back there in that dark place in the mind.

A little message from the Universe to me
Although you might not really think so after reading this post, I am actually in good spirits.  Still smiling and as dorky as always.  I figured that I would most likely be getting "maintenance chemo" from time to time but I was hoping that I could put that behind me and not really have to do it.  But hey, if life always worked out like we planned then it wouldn't really be all that fulfilling or exciting.  One thing is always for certain, there is never a dull moment in the life of The Cancer Assassin :)