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.

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 or
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!!