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.

BUT...it 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!

5 comments:

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  2. At some point I would like to speak with you.I was diagnosed with intrahepatic CC a year and a half ago. I feel like I am sinking with no way out.
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