Thursday, November 20, 2014

In the spirit...of giving?

Yes I am!  I'm excited to go to grammas for Thanksgiving and I'm excited to get to see my mom and spend a few days in Seattle hanging out with her.  It's been far too long since I've seen her and she works way to hard often working weekends.  I know she does it mostly to be able to help me out and I worry about her working so much.  I don't want her to run herself down and get sick or something.  Regardless, I am just going to be glad to spend some time with her.

X-mas '13 with Mags Who Wags

Oh man!  I have been feeling so crappy lately.  Super run down, weak and shaky.  With the exception of the last four days, I haven't slept for more than two hours at a time in about three months.  No energy to cook or clean or even get out of my apartment.  Wanna hear my theory as to why?  I really think it is because I am now almost 11/2 years into chemotherapy again.  I remember what that was like last time I was there.  I had a huge painful rash all over my face that hurt so badly I couldn't even put my face on my pillow.  I weighed about 103lbs and was way to skinny.  My hair was so thin you could see my scalp and I often wore a hat or a wig to keep warm and not look so crazy.  I had neuropathy all over my body in many different forms and my chemobrain was fried extra crispy...couldn't even concentrate long enough to follow a 1/2 hour sit com and just forget the notion that I would ever have been able to remember anything at all.

As I sit here typing this I am now three treatments shy of being at the place I was last time.  The bad news is that all of the chemotherapy has completely fried my poor gallbladder and it hurts a lot now.  The good news is that I don't have a huge rash all over my face (my skin is actually better than it has been in many years, mostly I think because I use castor oil and olive oil with lavender e.o. as face wash every day).  I still have a full head of hair and I just wear a hat to stay warm or look cute now :)  I weigh 121lbs at weigh in last week during chemo.  Most of my pants don't fit, so actually I am trying to re-haul my diet once again to eliminate more carbs and sugar from it.  I have to fess up and admit that I have fallen off my bandwagon in regards to eating well.  I have been feeling so crappy for so many months now that I have not spent the time cooking like I usually do.  Not as much time preparing fresh foods meant many meals that could be heated up in the oven or on the stovetop.  Usually those meals have a lot of empty carbs and those eventually make you just feel worse, not to mention make your pants not fit.  My chemobrain is not as bad as it was before but it is definitely still there.  Concentration is an issue for me as I am once again finding myself not being able to do one thing for too long without starting something else or forgetting what I was doing.  It's hard for me to remember dates/plans.  I constantly have to keep asking "when is such and such again?" or I just forget that I got an invite all together.  I have two calendars that I write everything on and usually about 8-10 post-it notes in the brightest colors I could find with notes to self written in bold fat sharpie.  They are stuck on my mirror in the bathroom right in the middle so I can't miss it.  I have them stuck to my front door to remind me to do something before I walk out.  I have them in my car to remind me what errands I have to run after I get my IV or chemo.! What would I do without you?
X-mas '14 downtown Portland with my mama

Even though I feel crappy more often than not and my energy is very low and I have some chemobrain going on I am so thankful I am not in the place I was last time at this point in my treatment.  Now you wanna hear my theory on why I think the side effects from the chemo aren't as bad this time as last time?  VITAMIN C IV's!!!  Seriously those things are absolute life savers.  They enhance the cancer killing effects of the two chemotherapy drugs I get (it's been proven in studies even).  It acts like a natural form of chemotherapy by oxidizing cancer cells (vitamin C only does this when in IV form, taken by mouth it is an anti-oxidant which is good for boosting the immune system).  It has NO negative side effects, or at least I have never experienced any.  My nurse says that it can sometimes cause bloating and gas but it has never happened to me.  It makes me really thirsty though and I often drink 80-100oz of water on those days.  It does wonders for the skin, hair, and nails.  And considering that at the beginning of the year I had more cancer in my body than I do now, I think that on top of all of the positives of the C I can safely say that it truly seems to be helping to assassinate those tumors.

But...I have a problem.  I only have enough credit in my account at The Center for Traditional Medicine where I get my vitamin C IV's to get three more IV's.  I have been trying to spread them out as thinly as possible but as often as I can so that I can still get some benefits from them but making them last a bit longer as well.  I am supposed to get three a week, but honestly that is just too hard for me.  I am ok with two a week but on chemo weeks I think I could only handle one.  I am not trying to be to optimistic but I would really like to get one a week.  I know that is not optimal according to my doc but he does agree that some is better than none ( he wants me to get three).  The IV's cost $145 each, see my conundrum.  I can't even afford enough groceries to last me for a month with my income.  My mom helps me out, my dad helps me out, and friends help out, but they can only do so much themselves.  My plan was to take a break from chemo for a few months to give my battered body, brain, nerves and aching gallbladder that has been fried from chemo a much needed breather.  Maybe I will heal a bit, get back on track, get some of my energy and mojo back.  Maybe I will even have enough energy to go for a small hike, who knows!  I was hoping that during the time I am not getting chemo I can replenish my body with all kinds of good stuff.  I am hoping to be able to continue my vitamin C IV's at once a week but I can't do that without a little help...ok a lot of help but if a lot of people help then it just makes it a little cause a little goes a long long ways.

So here(are) is my plea(s):

Please, PLEASE enjoy your holidays!  Spend time with as many friends and family as possible and no matter your differences remember how thankful you are to have them all in your lives.

Be safe out there and stay warm and be kind.

If I am not back on here before Christmas please have a wonderful, joyful time filled with love and memories.  I have a lot of projects to get done before then because I am crafting all of my gifts.  Have to get crafty and creative when there is a money shortage :) but it makes for very unique gifts.

AND if you can spare $1 or $5 or any gift cards for grocery stores (Fred Meyer, Trader Joes, Whole Foods, Safeway) or gas gift cards I would really appreciate any help at all.  I'm serious, don't feel bad about giving $1 because every bit goes a long long way and you have no idea how much I appreciate it. Here is the link with contact info for my naturopath where I receive my C IV's. They are happy to accept a check or take a debit/credit card over the phone.  And...THANK YOU!!!!
The Center for Traditional Medicine 
If you would rather donate via paypal you can do so at thegrassygreen(at)gmail or contact me and I can get you any information you desire (addresses etc)

The last tree my little kitty girl helped me decorate.

Cholangiocarcinoma, diet, and supplement information for those out there who have questions.

I want to include a couple of links for those out there who have been asking questions about diet, supplements and just in general what to do if you or your loved one has cholangiocarcinoma.  The links are to my diet and my supplement list but please take this with you as you read them.  Everyone is different and what may work very well for one person may not work at all or not as well for another.  I cannot diagnose or prescribe a treatment plan for anyone as I am not a doctor.  All I can do is share the things that worked for me.  I think that with food it is pretty safe to say to avoid sugars and all processed foods while making the bulk of your meals vegetables and maybe some meats if you can handle meat.  Now again, if you need to gain weight veggies alone aren't going to work and you might need those carbs.  Do you see how me offering advice becomes a slippery slope.  So with that in mind please accept my account of the things I did that have helped me.  I wish I had the energy and time to talk to every single one of you personally but a lot of the time I barely have enough energy for me right now.  Please be healthy out there and never ever give up hope.  Doctors can not tell us how much time we have left on this earth.  My motto is to live every day as if it was my last and to try to be as good to my body as I possibly can be given my energy and finances.  I always try to find the good in everything rather than the bad and I find that it really helps me feel better not just emotionally but physically as well.  Surrounding yourself or your loved ones who are sick with nothing but love and light and peace instead of worry might go a long way to boost their spirits and give them the motivation they need to fight the cancer.
If you want to speak to my naturopath to get more detailed information and scientific explanations as to your specific case you can reach him at The Center for Traditional Medicine in Lake Oswego, OR.  His name is Dr. Noel Peterson.  He has even helped out of state people before by record faxing and phone conversations.  I know he is a very busy doctor though so try to be patient if he can't get to you right away.  He is a wealth of detailed scientific information.

Here is the link to my diet information for those interested:
My Cancer Killing Diet and Lifestyle

And here is the link to my supplement information:
Questions Answered

Another link on supplements:
Supplements...why they are good for me and maybe you too.

I do take a few more supplements than that now but those are specifically for certain conditions I have as a result of all of the chemotherapy.  I am not sure that those should be recommended unless by a doctor.

Once again I want to let you all know that YOU have been the best support system that I could have ever dreamed of!  It has been because of every single beautiful one of you and your shining spirit that I have been able to kick this much cancer booty!  I look at every day as a blessing and find something beautiful in every one of them, even the bad ones.  There is so much beauty out there and it doesn't take a lot of looking to find it.  Soak it in and share it with the world.  A little more love can't hurt a thing.

Friday, November 7, 2014

I'm still alive!

Yes indeed!

I have had quite the break from blog posting.  I must guiltily admit it felt kind of good to be away from most social media for the majority of the summer with some occasional posts on the book of faces to keep everyone there up to date.  I also feel the need to offer an apology to those out there who have been looking to the blog for updates.  I can't say that it has all been fun and games but fun and games were definitely part of the summer equation.  It feels like most of my year I have been sort of in a state of hiding or being low profile.  I guess that there comes a time when one feels like no one really wants to hear me complain about this or that with regards to what seems to be hurting or bothering me at the time, so I kind of clammed up and focused instead on spending a lot of time with my family throughout the entire summer when I was not in chemo, a C IV, or the hospital for one thing or another.  I feel like ever since last Christmas when my kitty passed it has been one thing after another but not always in crappy ways, actually mostly in good ways.  Two days after my kitty passed I got a new port because my old one was wearing out.  Then I had to get another one because the last one wouldn't heal, then there was all kinds of weird pain and a hospital stay then it was radiation and more mystery pain requiring me to resort to morphine to get it down to a bearable level. gets much better!

In between all of this I got to spend loads of time with my mom, dad, aunts, uncles, and my gramma.  At the end of May my mom, aunt, and I went on a rock/gem hunting mini road trip and got to stay in an awesome teepee in the desert in Oregon.  In july mom and I went on another road trip to hunt rocks and gemstones.  We hit 9 states, hot springs, campgrounds galore, a bunch of thunderstorms with crazy lightning and loads of rocks and fun and beautiful scenery.   Most recently my dad and I went on yet another rock/gem hunting road trip and literally filled up the back of the truck with rocks, gems, and geodes that we had found at our various destinations.  It has been so awesome to get to spend so much time with my family.  I love hearing all those stories that I have never heard before.

I can't wait till the holidays are here.  I'm a sap for Thanksgiving and Christmas.  I love the commercials, the shows, the music, the sparkles and all that stuff.  For some reason it just makes me happy.  I'm hoping that with December
24th being the anniversary of my kitty girls passing my Christmas wont be sad.  I'm planning to pay tribute to her this year somehow and celebrate how much joy and love she brought to my life instead of feeling sad although I know that there will be some sadness as well.

How am I feeling lately?  I can't say that I feel good, but I can't say that I feel bad either.  For some reason I just can't sleep.  Get horrible night sweats that wake me up to soaked blankets.  I usually get up and stand in front of the heater while drying off with a towel because by that time I am freezing from being soaking wet.  I've been sleeping on the sofa for about the past two and a half weeks.  I think I have by now associated my bed with negative emotions about sleeping.  Every time I try to sleep in bed it just doesn't work lately.  So it's always a mystery.  Will it be the sofa or the bed tonight?  I guess I will decide that later when it's bedtime.
Chemo has been going well and as far as I know there is no end in sight anytime soon.  I will most likely take a break for a while at the beginning of the year or so.  Its been going on a year and a half since I started chemo last and I don't want to destroy my kidneys or gallbladder (or whatever else I don't even know yet) any more than I have to.  At every two weeks that is about 40 treatments of chemo I have had since July '13! Yeah, might be break time soon.

Vitamin C IV's are also going very well.  I have been getting only one C IV a week lately for two big reasons.  Reason 1 is that I am running out of funding for them.  I have enough left to get 7 IV's and that means 7 weeks which brings me to about the end of the year.  Reason 2 is that I feel like I have been so poked, glued, stitched and prodded this year that I can mentally or physically hardly handle getting stabbed by more needles and being in appointments for so long.  I feel good about once a week and until things change or more tumors show up or money runs out I think that is going to be my plan of attack for now.

I had a HIDA scan recently.  They had to do the scan twice because they couldn't find my gallbladder.  It determined that my gallbladder is definitely not normal.  My oncologist says that it is most likely from all of the chemotherapy I have had.  He said that if he referred me to a surgeon that they would definitely want to remove it.  BUT we are not sure that it is the cause of my mystery pain so he and I are both of the opinion that surgery isn't the most appealing option at this time.  The number of good days I have compared to bad days is still great enough to not even consider it right now.

Food has been my biggest nemesis lately.  I just don't want to eat anything.  Nothing at all sounds good to me.  I go to the store for groceries and just end up disappointed because I walk around looking for inspiration or motivation but leave bummed and with the same old stuff I always get which isn't very appealing when nothing sounds good.  If I could eat anything I wanted at all, I'm talking like a giant buffet with anything at all right in front of you and I could have anything I wanted I would still most likely say that nothing sounds good.  Part of it is from fear.  Weird huh?  I get hungry and want food then I realize that the things I have in my house are all blah and not entirely the most healthy thing I could eat so I don't want to eat anything at all.  I often don't feel good enough to spend much time cooking (which sucks because I used to love to cook) so I try to get food that is easy to prepare but what I have been struggling with lately is easy to prepare vs. appealing and appetizing.  I have been considering spending my grocery money on one of those meal delivery services for two meals a week just for something new and inspiration to maybe want to cook again.  Steamed veggies are kind of getting a bit old.

I don't know about where you live but here in Portland it went from summer to fall in a matter of 24 hours.  One day it was sunny and 70 degrees and the next day it was daylight savings losing an hour to 60 degrees rainy and dark by 5pm.  Dark by 5pm is a real issue for me.  It is gonna take me another week or two just to get used to this whole thing.  I usually get up and go down with the sun as far as sleeping but when it gets dark so early I struggle with my daily rhythm for a while.  I will get used to it by Thanksgiving hopefully.  Once I get used to it I actually get pretty productive.  Winter time is my project time when I like to get crafty and create things.  I'm hoping to start making some jewelry from the stones I have picked up along my summer travels.

My goals this year are to get some homemade Christmas presents done by the holiday and to rekindle that fire I used to have for cooking yummy food at home.  I want to make it so that food to me doesn't end up going the way that my bed has gone with negative emotions associated with it.

I will also try to post more on my blog even if it is just a paragraph or two.  I often feel like I need to spend lots of time and effort but fail to realize that I don't necessarily need to write a novel, just keep people informed about things, right? :)  Hopefully I will find my energy and get some of my lost mojo back.  In the meantime you all take precious care and stay healthy and keep smiling.  I will do the same and keep on kicking some cancer booty!

Much love to you all!