Monday, April 6, 2015

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!

Wednesday, February 25, 2015

Catching up and still kicking some cancer booty.


I hope that everyone has been doing well, staying healthy and happy and having a wonderful new year!

It's about time that I gave everyone a big update on what's been going on since the holidays.  I had a wonderful Christmas with my parents.  I got to spend some quality time with my mom and dad although the time I spent with my dad was mostly spent on the couch in pain.  Luckily by the time my mom got into town the pain was mostly gone and I got to enjoy myself more.

Which brings me to what has been happening health/cancer wise in my world.  I had my CT scan on January 23rd.  Had a bit of bad news.  It looks like I have a new tumor growing in my liver again over on the right side this time.  The other tumor that got radiated is still not growing and is looking more like it is still dying and the tumors in my lymph nodes are still just hanging out being peaceful.  My oncologist said that if new tumor does not shrink or respond to the current chemo that I might have to go onto a new chemo combo called Folfox.  I am really hoping not to have to be presented with this choice.  Folfox is a combo of 4 chemo drugs that gets administered in two stages, one day in chemo at the clinic then they leave you hooked up through your port for 36 more hours while you take it home and sleep/function with it attached to you as well as a pump that you have to carry around.  It slowly drips in over the 36 hours.  Next another trip to the oncologist is required so that they can disconnect you, ultimately and effectively removing 4 days of your life in appointments or being hooked up to a chemo pump.  Like I said, I am focusing on manifesting good results and a shrinking tumor so that this does not become my new reality.  I will know for sure when it is time for my next scan and that is sometime near the end of March, so about a month from now...Send positive thoughts please! Oxxo!

Next on the list of health woes is that the 3 years of chemotherapy I have received has really done a huge number on my poor gallbladder.  It has shrunk so much that the technicians cannot even find it in a number of scans.  It has really taken a beating from the extended chemotherapy treatments (plus it may not have ever worked properly for a long time anyway leading to my cancer perhaps).  As a result of all the abuse it tends to hurt profusely after my chemo and vitamin C treatments.  The first time it hurt  the excruciating pain lasted for about 4 days.  The second time it happened the excruciating pain lasted for about 7 days, and the most recent time the pain only lasted for about 3 days.  The pain is so severe it feels like I am being stabbed with a knife in my right side.  I cannot breathe in very deep and as a result am always out of breath and energy.  It hurts to move, to lie on my right side, to eat, to poop, to sit, to do just about anything but lay down and try to find relief with a heating pad.  Once the pain gets bad enough I resort to oxycodone and morphine to find much needed relief, which only leads to more issues I will save you from.

I have been asked why I don't simply get my gallbladder removed.  Unfortunately it isn't that easy or I would trust me.  Turns out my cancer originated in my bile duct which is connected directly to your gallbladder so in order to remove my gallbladder they would have to cut through cancerous tissue and risk spreading the cancer all over at that point.  This is simply not even an option in my book.  So to find some sort of a solution I consulted my naturopath to see what he had to offer.  He gave me some dandelion tincture to drink in hot water 3 times a day and also some homeopathic remedy (mandrake) to take 6 times a day and so far I have to say that I have noticed a large difference.  I still ache constantly but I have not had the side stabbing excruciating pain like before.  Once in a while there will be a little stab here and there but I really can't complain too much about that.  I have been a little afraid to get a vitamin C IV for the past couple of weeks because those seem to cause gallbladder pain as well.  Instead I have been getting some nutritive IV's to try to soothe my little GB.  This Friday I am back on the vitamin C's though and I am trying not to focus on being afraid of if it is gonna make me hurt.  Thinking positive thoughts!

So to make a long story shorter I have been mostly feeling fatigued, in a LOT of pain, and completely unmotivated but the good part about all of it is that even these times have been punctuated by some really awesome quality time with friends and family.  I really have enjoyed my time with my mom too as I haven't really been able to spend as much time with her since last July.  She has been really busy working and it isn't easy for us to make the three hour trip to visit for a weekend.  We are really looking forward to trying to plan some kind of get away this spring/summer for a week or longer.  I am wondering if any of my friends out there have a condo/or rental somewhere awesome where one can unwind, relax, and recharge, preferably somewhere warm :)  If so please let me know and we can discuss price and details.

Much love to you all and many, many healthy blessings!