Hey look! A new blog post!

Today I have a little energy.

That hasn't been the norm lately.  For months now I've been feeling like a clock that has been gradually winding down, going slower and slower as the days go by.  I have been exceptional at holding down my sofa though.  Let me tell you it is going nowhere!  My 5 year cancerversary was last month, and of the past 5 years that I have been diagnosed with cancer only one of those years has been without chemo.  Let me tell you four years of chemo can really wear on a person.

I am always cold during my IV's

I thought I was going crazy for about a month.  I was shaky, unstable, feeling really strange and weird and just not right.  I knew something was wrong but I just couldn't put my finger on it.  One day I almost went to the ER but knew that they would just blame it on the chemo.  So I called my nurses and picked their brains.  Both my naturopath nurse and my oncology nurse felt pretty sure my I had hyperthyroidism and the symptoms seemed to fit.  My blood labs came back and my oncology nurse said I was just on the low range of normal and blamed the chemo for my symptoms saying that was the only thing it could be.  My naturopath nurse and doctor felt that even though I was in the "normal" range it was too low on the normal side and gave me a script to help.  Within two days I felt back to my version of normal again and a week later I crashed for a week sleeping 13+ hours a day just to counter all the hypertension I was feeling the month before.   It has been a strange year so far...

Lately I have been so tired, unmotivated, completely fatigued, and utterly lethargic not even wanting to expend the energy to cook or clean.  Often I lay in a puddle on the sofa until I have to get up and drag myself into my appointments for IV's or chemotherapy or various other doctors appointments.  It is so completely different than what I am used to being able to do.  I remember I used to be so independent, often going hiking and camping alone, dreaming and anticipating and scheming about my next adventure.  Even when I had two herniated discs in my back I still muscled through the pain and did as much as I could.  Most of the time now I don't even have the energy, drive, or motivation to leave my house unless I have to.  This has been messing with my mind too.  It is an emotional drag to feel so crappy every day.  I've been really good lately at making myself feel guilty for all of the things that I haven't done, or that I need to do, or that I want to do.  Lots of guilt and a little bit of depression as a result.

The suspension bridge at Falls Creek Falls

The good news is that I got a little energy to get out last week and go for a small hike with a good friend.  We went to Falls Creek Falls on the Washington side of the Columbia River Gorge.  It was exactly what I needed!  It felt so good to get out and get some exercise and fresh air.  We saw a hummingbird dive bombing a woodpecker and heard a lot of other pretty bird songs.  The falls and suspensions bridges were amazing and we even had a little time to ourselves at the main falls before others showed up.  It was calming and serene.  I had to stop quite a bit on the trail on the way up to the falls but on the way back I was bouncing!  The only bad part of the day is that I got sick in the car on the way home...luckily my friend had a plastic bag in her car.  This prompted an unexpected detour to a Burger King garbage can then everything was fine and we were on our way home.  It was a small price to pay for such a beautiful day.

The last tier (of 3) at Falls Creek Falls

The bad news is that I have had so much chemotherapy in the last five years that my body is not going to be able to handle it for much longer before it starts having major difficulties and I don't want that to happen.  My awesome nurses at my oncology center referred me to a doctor who finds clinical trials for your specific cancer.  I have a call in to her and am anxiously awaiting her response.  The difficulty is that it costs $300 which I don't have but that is a small price to pay for having someone do the legwork of finding a trial for you as well as getting you into it.  She looks all over the entire country to find one that will fit for your needs, so who knows, I might have to travel.  I am hoping to find one here in the PNW but at this point I will go where ever I need to go.  My options are running thin at this point.  My next scan is coming up near the end of the month (it actually hasn't been scheduled yet but will be soon) and once I get the results from that I will decide how much longer to get chemotherapy.  My hope is that the tumor that sprang up anew in January will have either gone away completely or shrank.  If it has grown at all I am going to panic a bit, or a lot.

Every other Tuesday

If you have emailed me, please forgive me for not getting back to you as of yet.  I hope that you understand that it has been very difficult for me to do the smallest of tasks.  Two of the most asked questions I receive via email is regarding my diet and my supplements.  Below I have provided a link to each one (these can also be found in my blog under past postings).  I am very sorry to lump everyones questions into this one impersonal post, however I must conserve my energy as there is very little to go around lately.

Link to supplements

Link to diet


One thing I am very much looking forward to is the little vacation/road trip I have planned with my mom.  We are traveling down to the desert and doing a little sight seeing and light hiking and maybe a little rock hounding.  I absolutely LOVE road trips.  Although, if I had any vacation I wanted, it would be in La Paz, Mexico.  Now THAT place is nothing but peace, relaxation, and a loss of all of your worries.  I have only been there once but I very much hope to go back there again one day, until then the desert is calling my name.
I am also excited about gardening.  Somehow even if I have no energy and the sun is shining and I am able to be out in the garden at my dads house sitting there in the dirt digging holes and planting vegetables I am happy and content.

Those are the two things I am looking forward to and the many scary things I am dreading...Fingers crossed for a positive scan and an awesome clinical trial and in the meantime I will be holding down my sofa :)

Many healthy blessings to you all!

Pobody's Nerfect!

As I sit drinking my morning cup of green juice made with cucumbers, spinach, celery, carrots, ginger, half an apple, parsley, and a lemon (with most of the peel removed) I am reminded about how much I forget or neglect some things in my life.

Today's post is dedicated to all of us who procrastinate, forget, or are sometimes just too lazy to do certain things.  I am certainly guilty of all of these things.  Procrastination, lets see...I think I am pretty darn good at that.  Sometimes I am on it, but other times I put things off until the very last minute.  Forgetfulness, well lets just say that chemo took care of the short term memory and that there are still moments, entire days actually, lost from my memory as a result of chemotherapy.  And laziness, ah yes, my old pal.  I have never been a lazy person.  Even while on chemotherapy I still got off my butt and got outside and played in the wilderness, rock climbing, hiking, skiing or just sitting somewhere beautiful.  Sometimes, often actually, I get dead tired (again I am attributing this to the chemo and my body healing itself and detoxing the dead tumor matter from my liver) and I sit and do absolutely nothing at all, unless it is to sleep and nap on the sofa all day long.  I forget to take my supplements (or is that laziness, OR is it because I want to stretch them as far as possible because they are expensive) and I often go far too long before I eat anything (the appetite is still in need of improvement), and I know that is not good for a healing body.

Sweet potato chips that went wrong.
Now they are treats for my friends pup :)

What I am trying to get at here is that nobody is perfect.  Why would anyone want to be? What fun would there be in life if we did not learn lessons from our past?  Even though I know that I should be doing certain things, I sometimes don't do them.  Why? I don't even begin to know the answer to that one.  But the most important take away message from this is that even though the going gets rough sometimes and you momentarily forget, procrastinate or get lazy you get back on that horse and ride it right into the setting sun.  Everyone of us (no matter how "perfect" they may seem to others) has our moments of stumbling and stagnation.  It is important though to remember that we need to be honest with ourselves and recognize when our "less-perfect" side is taking over our world and our health.  At this point we can either give into it and let it control our lives or we can recognize it and accept that we can't always be perfect and try again.  Don't let it get you down if you ate an entire box of donut holes last night.  Learn from it and listen to your body.  Really get in tune with how that made you feel.  Maybe it made you feel happy and satisfied at the time but the next morning were you suffering (bloated, gassy and irregular) or did you notice that you slept badly during the night or had weird dreams or even nightmares?  This is your body telling you that you gave it something that it did not need or want.  There is always time to change your habits.  There are always improvements to be made.  Just don't dwell too long on all of the things you want to improve upon so much that it gets you down and contributes to more negative behavior.  We all stumble a bit and that is the way we learn.  We cannot have light without the dark.

Hey! Pobody's Nerfect!

Sunshine, rocks, trees, waterfalls, and PET scans

Tub full of carnelian agate

It has been a busy summer so far, but busy in a fun way.  My dad came to visit and we went rock hunting and to the Bagby Hot springs, I got to see his new place in Castlerock.  It's right on the Cowlitz river.  Looks like I am going to get to catch some salmon soon.  He also agreed to let me keep bees there too and I am excited about that!  A few days later my mom came for a visit.  It was a ton of fun.  We headed over to Madras, OR for the All Rockhounds Pow Wow, it was fun to stroll through all of the neat-o stuff.  On the way home my mom treated us to a little bit of gambling at a casino in Warm Springs, OR.  We always go cheap, we split $20 ($10 each) and played the penny slot machines for a few hours.  It was actually a nice distraction from the norm.  We came out with 10.33 still in our pocket.  Not too bad for a couple hours of entertainment.  Mom and I also went rock hounding (looking for carnelian agate) and found so much that we could barely carry it out to the car.  I just love finding agates! It is like getting little special gifts from nature.  It is a rush every time you find one, especially if it is large or has some druzy inside.  We also hiked to Ramona Falls and as usual, it was spectacular.  My mom had a great time enjoying the scenery and checking out the vegetation.
It seems that my summers are like this...busy but in a good way.  I love it! I love seeing my friends and  family and showing them where some of my favorite spots are.

Ramona Falls hike

I was talking to my mom about my diet lately, how I've been avoiding wheat, gluten, sugar etc. and how hard it is in any social situation (even if it is only with one other person) to adhere to this diet.  It seems that you can't walk into any restaurant and avoid the "brown food group" you know the one, colorless, lifeless, processed, and re-processed until it really no longer even resembles natural food anymore.  Now my mom knows how important my diet is to me and that it is largely responsible for the assassination of the cancer in my liver, but she also watches me struggle with eating as well.  To those of us with cancer or other life altering diseases we are acutely aware of how we are not the same person anymore in many aspects.  Food, being the building block of life, is critical to good health.  Food is also synonymous with social gatherings as is alcohol.  It is strange to go to an event (lets say a family bbq or friends birthday party) and watch everyone eating and drinking and you (the one with cancer) are getting side glances from people (or maybe I just think I am) wondering why you don't have a plate of food, some of their potato salad/pasta salad, hamburger, processed veggie/soy burger, hot dog, or strawberry shortcake...and why the hell isn't their a beer in your hand??  No one understands this better than my mom.  She has had to put up with hearing me go on and on about how difficult social gatherings revolving around food and drink are for me.  It sucked that we couldn't go get a giant plate full of yummy pasta, with some crusty bread and a glass of wine.  It also sucked that we couldn't go to Pine Street and have one of the best biscuits on earth for breakfast one day.  Now, don't misunderstand...I am not trying to say that eating pasta or a biscuit is going to kill me or anything that extreme, but if I do stray from my diet and have that indulgence I am paying the price not even 30 minutes later...bloating, gas, stomach hurts, feeling like I swallowed a beach ball, etc.  The next morning is no better, the bloating is still there, looks like I am carrying a child, can't get relief because the back door is locked if you know what I mean...

Ramona Falls

So it boils down to this.  I HATE going out.  I feel that if I cook and prepare my own meals at home, not only is it healthier for me as I can cook what I know is good for me and know exactly what goes into it, but it also alleviates the anxiety of trying to figure out what to order on the menu...lets face it, one can only eat so many salads.  I hate the bar, but everyone that wants to go out usually gathers there.  I order my "mocktail" or tea and sometimes get a refill but I am always ready to leave before everyone else because I am bored and quite frankly tired of watching others drink and drink.  Funny thing beer is, you order and drink one and you just want another and another.  Everyone around you doing the same thing.  I lightly mention that I am getting ready to leave and immediately find myself making excuses to go, "I am getting really tired", "its late and I didn't sleep well last night", "I don't feel very good" etc.  A lot of times I imagine that everyone is thinking that I am a prude or party pooper, I'm always the first one to leave.  On my way home from such events I get a little depressed, thinking about how nothing is the same anymore, how I feel like an outsider or an oddball, like I just don't fit into this world anymore. I love my friends, I love seeing my friends and visiting with them.  And I don't want them to treat me with kid gloves because I have cancer or because my diet is different from theirs.  But then I have to face the reality that cancer does make you a different person in every possible way.  I like to think that having cancer made me more aware of my health, my diet, my body, and more appreciative to be alive. Even though all of these good things came from a cancer diagnosis, it is still hard to overlook the social awkwardness of certain situations.

Rhody shadow on stump

ANOTHER PET SCAN COMING UP!
So this coming Thursday the 12th I am going in again for my 4th PET scan.  I haven't seen my oncologist for 2 months.  The appointment with him to determine the results of the PET scan is on the 17th...I will keep you all posted.  I am hoping that it is going to be looking even better than the last time.  I will be honest, I have been worrying about it lately.  I've been so tired, sometimes sleeping all day long, going to bed and sleeping all night and waking up just as tired as I was before all the sleep.  My liver aches still, some days more than others, but every time I feel it I can't help but worry "is it coming back?" "what will the scan say?" "will they tell me that I have to get chemo again?"  UGH!

I have been really frugal lately, another reason that I hate going out.  One meal at a restaurant can buy 3-4 days worth of veggies for me.  I rarely drive anywhere anymore.  It saves money (gas) and I need to get my brakes replaced which is something I cannot afford to do right now.  My car has been parked in the lot of my apartment building for almost 2 weeks now.  Another reason I don't go out.  I am waiting for my dad to get settled into his new place and then I will be taking my car up there and working on fixing brakes together in his garage.  I know it can't be that hard and my family (including me) are all handy like that :)

miniature forest 

In the meantime, the sun is shining here in Portland, its in the mid 80's, the birds are singing, the grass is green and the roses are blooming.  Funny, I feel like less of an "oddball" or "outsider" when I am in the woods, no pressure to go to the bar, the trees and I can just sit quietly and enjoy each others company.