Thursday, May 31, 2012

Resource sharing is awesome!!

Hello everyone!
I have been meaning to do this for so long now.  I have some really great resources to share with you all.  Let me just get to it, ok? Here goes.

Find a Cure Liver Panel

FACP is looking for STAGE IV liver cancer patients OR for their caregivers.  They specialize in patient related resources for serious and rare liver disease.  It is a 45 minute phone conversation (with either the patient or caregiver) and $100 goes to a non-profit of your choice if you participate.  This is valuable stuff people as it helps research these rare cancers of the liver, such as cholangiocarcinoma.  So little is known about CC and every little tiny minute bit helps learn more about how to prevent and find a cure for these cancers.  If you know someone who qualifies (must be stage IV and in treatment) please pass this along to them.

Sorry everyone...It looks as if this study is now over.  I will let you all know if I hear about another one as soon as possible..

Someone With

Here we have a great resource for those out there with breast cancer.  This site has lotions, potions, lymphedema sleeves, scarves, books, you name it! And all at reasonable prices as well!  I have used the Queasy Pops and they are literally a life saver!!! Seriously! I got so tired of always eating ondansetron (literally about every 4-6 hours) and these little candies really helped with the nausea.  They have suckers and little hard candies (those were my favorite) and they come in different flavors too (raspberry was my fav) and for about $5 they really do a great job of keeping you from driving the porcelain bus if you know what I mean.  I also have two of the books on this site, "The Cancer Fighting Kitchen" and "Eating Well Through Cancer".  Cancer Fighting Kitchen is my favorite here and I use it a LOT.  Actually one of my all time favorite recipes is in there (quinoa stuffed acorn squash with collards).  You have just got to check this site out! It is so great to have so many resources in one place like this.

Crystals and their healing properties

I just love rocks, crystals, gemstones, minerals, and fossils.  I have used them for years and more so during my "cancer adventure".  I truly believe in the healing properties of gemstones and carry them with me, wear them (earrings, necklaces, bracelets, rings) and even sleep with them under my pillow to help different things going on with my body and emotions...cause they are related, right?  Here are two great sites I stumbled upon recently that gives pretty good information about different gems.  You might want to check it out, even if you are not a "believer" it is still super fun to read through.

Healing Crystals


Anyone out there with "chemobrain"?  Well, this is for you! This has helped my chemo brain so much and it is super fun!  They are easy (just working with different patterns to make a larger picture) and only takes 15-20 minutes and it really gives your brain some much needed something...anyway, it helps get those organizational things firing again up there in that grey matter.  Here is a site with tons of patterns to get you started.  Or you can purchase Zentangle books too.  They are awesome!

My third Zentangle

I have had two high dose Vitamin C treatments now. Each time I also have gotten a Vitamin B shot.  I started off with 15grams of C the first time and yesterday I increased to 25grams.  Over time I will be up to somewhere around 100grams.  It will take a while.  I am going every other week for this therapy (trying to stretch that dollar as far as possible and still get the benefits).  I have been battling fatigue for weeks and weeks now.  I actually slept until 11am today! Yikes!!! I must have needed it though, I try to listen to my body but sometimes its gets a little excessive, I mean really, 11am indeed!  

I am LOVING my new apartment!!! Let me say that again because it feels so good...

It is clean, doesn't smell icky, very quiet, the other tenants are super nice, the laundry room doesn't have bed bug signs in it, people don't stop me and ask for drugs or if I want to buy drugs, no one calls me vulgar names or tries to get into a fight with me, and no one smokes in the building! SCORE! I still am trying to get my place dialed out a bit, seems I am a collector of chotchkies and baubles and sentimental things...not hoarder-ville or anything like that but too much for my space.  So organizing and goodwill runs and ebay it is for me. That feels good actually, a purging of sorts in more than one way.  It is good for the soul.

I am trying to get the book organized and started in some way...I've never written a book before and it is pretty daunting.  I remember when I had to write my masters thesis, and that seemed easier than a book.  I've been telling myself that it is really nothing more than a long paper and I am actually pretty good at writing papers.  It is just the initial getting started phase that is the hardest for me, once I get it together and get it going it is less scary and I get super jazzed and will most likely have a hard time stopping sometimes. 

I have been trying to find creative ways to make an extra buck or two just to make ends meet.  I've been making mobiles, let me know if you would like one.

Wednesday, May 9, 2012

Getting on with it

On the edge of Mesa Arch looking down
My friend sent me this great article the other day and I have to say that it was very timely.  It was titled "No one told me that getting on with life after cancer would be so hard" by Mary Jennifer Markham, MD who writes of a patient experience.  The patient, a woman who had undergone chemotherapy for lymphoma for an entire year, had a clean bill of health at this exam but was having other problems that were just as hard to deal with.  How to get on with life after cancer.

Any of us who is lucky enough to have a life after cancer has had those concerns.  You know the ones I am talking about; "will it come back?" "what is that pain?", "why am I so tired all of the time?", "will my lab results look good?", "will my scan be good?", and so on.  We were all (if we were lucky) coached in what to expect from treatments (hair loss, nausea, loss of appetite, neuropathy, feeling as if you've been hit by a Mack truck) but we were never coached for how to get on with life if you survive. What do you do? Do you rest for a while and try to recover from chemo and if so how long? What if you decide to go back to work and the cancer comes back and you have to quit and reapply for all of the benefits and assistance all over again, something that has taken months and months to get in the first place.  What if you work full time and find that it is too much for you right now and have to quit or cut your hours back so much you can't afford to live.  What do you tell people about why you have been out of the workforce for over 2 years?  What is that pain in my side/leg/head/arm/throat anyway? Is it the cancer coming back?  Did I take my supplements/meds today? Did I eat enough vegetables?  Yeah, you know what I'm talking about.  Fun isn't it?

someone else making fun of "the system"
Those are the types of things that have been rolling around in my head lately.  Once you are on "the system" (SSI, section 8, health care, etc.) it is seemingly impossible to get off.  It's set up all wrong.  They like to tout it as being "easy" to return to work and even have classes to help you learn new skills so you can join the "workforce" again, usually making minimum wage in the labor industry but, hey.  If you make any money they deduct half of it from your monthly pay so it sounds good so far, right?  But it's not, because then you get hit by having to pay more for rent and healthcare and you get less food benefits so all of the sudden that extra money you made is gone and not only is it gone, but you end up paying more for earning it.  Messed up huh? I think so.  By my calculations one would have to make enough money in the month to be able to pay for everything (rent, phone, car, insurance, food, gas, internet, household supplies, medical expenses, etc.) just to be able to come out ahead and get off "the system"and have a job with benefits so that healthcare would not be an issue because, well, you never know.  This is where I am right now.  It feels a lot like nowhere really, somewhere between the lines of parallel universes trying to figure out which one of those I belong to now.  When you are told that you have cancer and you might not have too long to live you change.  You are emotionally, mentally, physically and in every other way challenged to reconstruct your life with your new knowledge.  Priorities change, health and well being become paramount and things like work, or school, or career, move toward the bottom of the list waiting to be dealt with when or if you get the chance.  It is hard to re-prioritize your life especially when it has already been through enough re-prioritizing for while.  I told myself that I would not be too hasty in seeking employment.  I want to give myself enough time to make sure that everything is going to be ok, that I can handle working full time physically and mentally, that I will make enough money to be able to get off "the system" and still have benefits, that my next couple of scans all still say good things, that I have the mental ability to concentrate on something for a given amount of time, and that I am not just too fatigued to stay awake, alert and present for more than 3-4 hours at once.  But when?  I feel like I need to start making some plans.  Set a goal.  Start the process of starting over again.  Here is my idea, I would love to know what you think.

I was browsing some of my favorite blogs the other day and came across my friend Sonnet's awesome blog For the Love of Food.  Sonnet writes about food and good, nutritious, healthy, vegetarian food at that.  She has so many delicious recipes and is very knowledgeable about nutrition, food and health.  I noticed that she is a holistic health coach, something that I have really been looking into lately, and sent her an email asking about it.  Turns out that she is attending the same institute I am have been looking into and she has nothing but good things to say about it.  Sonnet and I both attended Antioch University in Seattle and as a result have high expectations of the schools we choose to attend and how they structure the learning process.  It was such a relief to hear positive things about the school.  I am very excited to begin the process of obtaining my certification to be a holistic health coach.  From my experiences over the past two years, all of the research, and all of the questions I get regarding my health and cancer diagnosis, and cancer assassination, I feel that it is my calling in life to help others become healthier.  This certification will allow me to do that even better by taking the knowledge and first hand experience I already have and integrating it with more knowledge of how to do so while also expanding on the knowledge I already have, plus I will be credible and certified having a platform from which to operate and share such knowledge professionally.  The program is great! They even help with setting up your own practice and give you all kinds of tools and resources to do so.  It is a 12 month program but in 6 months I can become certified meaning that by the first of next year I can be independent and off "the system" while helping others and doing what I love to do!  I even got a scholarship to attend, but the bummer is that it costs $5,000 and my scholarship is only for $500 plus I get another $500 off if I pay in full bringing it down to only $4,000.  Yeah right!  I live on $7 a day!  So in the meantime I am making mobiles to sell.  Let me know if you want one.  Saving to buy supplies to make some jewelry from my tumbled agates that I found on my rock hunting trips so I can sell that too and scheming about how in the world I am going to make some money and get off "the system".
some of my tumbled agates waiting
to become jewelry

Big news! My naturopath at The Center for Traditional Medicine in Lake Oswego (Dr. Peterson) wants  me to start a new treatment.  High dose vitamin C intravenously.  Vitamin C is well knows as an antioxidant when taken orally but when given in high doses intravenously it actually becomes an oxidant creating hydrogen peroxide and killing cancer cells.  It also is supposed to be great for relieving side effects of chemotherapy such as fatigue (did I mention that I've been sleeping about 12 hours every day), chemobrain, rebuilding and renewing cells, with the added bonus of the feeling of abundant energy and wellbeing.  Sign me up!! Sounds great huh? I bet is is great! The not so great part about it is that it costs a lot more than the nutritional IV's with glutathione that I have been getting for the past two years.  Another one of those things that has to change because I am in that place right now.  Cancer dead, no more chemo, no more pharmaceuticals, and needing to change and get on with the next steps of treatment after cancer.  The first three months of the treatment is going to cost $800 as I need to get IV's once and sometimes twice a week.  Those IV's are also administered over a period of 3-5 hours so it also means I will be in the clinic a lot again for a little while until I get built up to the level I need, after that it is a weekly thing.  I am super psyched to start this treatment so that I can begin to feel normal again, have enough energy to stay awake all day (until at least 8 or 9 at night) and enough mental clarity to concentrate on something more than a sit-com.  I am not going to even schedule my first treatment there until I know that I can afford to pay for at least the first 3 months though. if anyone out there feels like they can spare a few dollars feel free to contact The Center for Traditional Medicine (503-636-2734) and put some financial loving into my account there.  I know times are hard and the economy sucks but I will say that every little cent helps the cause.  I hate having to ask for help, it sucks.  I want to help not always have to be helped.  I know that day will come one day though and I will be able to give back to so many what has been given to me, good health and a wonderful and abundant life.

I am also going to put the call out again for any unused gift cards that anyone has hanging around.  Those were so incredibly helpful before and I definitely made good use of them.  There are other ways to donate to help cover medical expenses such as the ChipIn on this page or directly into on PayPal.  Every little bit makes such a difference and I am so very grateful for the generosity of you all.

So that is pretty much the long and short of it all.  Where to go to get on with it and as Dr. Markham said "no one ever told me that getting on with life after cancer would be so hard".  But I am thrilled to be alive and have this problem.  The alternative just wasn't going to work for me.

Cancer Can Suck It!