Sick and tired of being sick and tired

An old Halloween picture.  I was about 24 years old here.

I've been having that guilt lately.  The "I wanna really write a new blog post and I really have a lot to say, but I really don't have the energy or the motivation." guilt.  I know many of my other blogger buddies out there know this guilt too.  I wont lie, its been rough lately.  I haven't felt very energetic.  I've been tired a lot and doing a lot of sleeping.  I've been mostly upstairs kind of keeping my distance from everyone (we have some house guests/family staying with us for a few months, 2 adults and 1 toddler and 1 infant) trying to not get sick from the extra germs in the house and making room for 4 more people.  Sometimes I feel like Rapunzel locked away high in a tower waiting for her prince to save her, but mostly I just feel tired and not very much like being social.
I've been neglecting/avoiding my vitamins and supplements.  It seems like every time I take them now I just end up getting sick, wasting money by just flushing them down the toilet.  I have an appointment with my naturopath and the new natural oncologist that just recently started working at the Center for Traditional Medicine.  I am once again very lucky, not only to have another awesome doctor on my side who just happens to be a natural oncologist but he also happens to know my "normal" oncologist (he was actually trained by Dr Shao) and they are all on the same page and all know exactly what is going on with me in every aspect which is nothing short of a gigantic blessing in every way.  We are going to discuss my progress in the assassination of my tumors, and how I perhaps now need to focus more on detoxing all of the dead tumor and getting it out of my liver and out of my body instead of concentrating so hard on killing it like I have been for the past 1 year and 8 months.
Everyone keeps congratulating me on my "success" of beating my cancer.  I have very mixed feelings about this.  First of all I want to say most sincerely and from the very bottom of my heart "Thank You".  I have to add though, that I do not feel like celebrating yet.  My oncologist is not convinced.  He says that my cancer (cholangiocarcinoma) is so slow growing that it might not show up on a PET scan and even the guy who said "looks like you've killed it all" was of the opinion that I need to still get chemo for a while just to make certain that all of those bastards are all indeed dead.  So chemo it is, at the very least until the end of this year and then even after that I still may get chemo until the end of spring.  I mean, hell, I've already been through nearly 2 years of chemo, I may as well make certain that I killed them all, what's another few months....So even though I got good news a couple of months ago, I still don't feel it yet.  I still feel tired all the time, I have exercised and gotten out of the house much more infrequently since the arrival of the house guests.  I've been visiting my mom a lot up in Seattle, mostly using that time to sleep and relax or take care of business and trying to shift bills around and change contracts on things to free up a few more dollars for groceries, cat food, etc.  At least once or usually twice (sometimes even 3 times each week) I have doctors appointments or some other type of appointment so I do get out of the house for those, but there are even those times that I feel so crappy I call them and reschedule those appointments.  Honestly I was a little surprised that I got chemo last week as I was feeling much more drained and tired than usual, but the doc said my numbers looked pretty good so we proceeded.   I did get a shot of Aranesp to help me build my red blood cells as they were once again in the toilet.  I guess that stuff is so controlled that even chemo patients can only get it if their red blood cell count falls waaaay below healthy levels.  That particular shot combined with the usual steroids I get before chemo is enough to keep me wide awake until the wee hours of the morning.  I didn't even lay down in my bed or attempt to try to sleep until 4:30 in the morning that day/night.
I wake up completely drenched in sweat at least 4-5 times each and every night.  It literally is dripping and running down my body, my pillow is soaked, my tank is soaked and my legs are even wet.  I literally feel like I stood out in the rain, that's how wet I am.  Then I begin to itch from the sweat.  I constantly itch anyway, it is a wonderful side effect of cholangiocarcinoma, but the sweat itch is THE worst!  I have a huge rash on my face from all the drugs I take, exacerbated by stress and sweat and toxins that my body is trying to flush out.  Once the sweat is drying I then begin to freeze and shake, so once again I grab the blankets and in less than 30 minutes I wake up drenched in sweat again.  This process repeats itself throughout the night until I finally just get up.  Sometimes I go out for a walk and wander the neighborhood at 3 or 4 in the morning hoping that it will cool me down and make me tired so that I will be able to go home, sneak quietly upstairs trying not to wake anyone up,  and crawl back into bed and snuggle with my kitty until I blissfully fall asleep only to wake up around 7am to try to start the day, only to repeat the entire process all over again.
Lately the chemo has been making me extra tired.  I fear that I am backsliding healthwise and I don't like it.  Supposedly everything is supposed to start getting better once you receive news of "remission" but I keep waiting to feel like it.  Don't get me wrong though, I am SO HAPPY to hear that I am indeed kicking cancer ass! I am so incredibly thankful to have my doctors and nurses by my side.  I am blessed that they are so smart and caring and on the cutting edge of health care.  I feel honored that they actually care about me and like me not just because I am their patient but because I am me.  I am also incredibly blessed to have such a wonderful support network out there and so many wonderful friends and family to support me on this arduous journey.  You all are my inspiration and are what keep me going when it is crappy and I begin to lose hope of an end being in sight.
Basically I guess that from time to time I need to have my own little pity party.  I have really been needing to get this off my chest.  I wont feel like I celebrating until it is all over, the cancer is gone, I have my memory back and my body back and my life back.  I always feel so horrible for posting such negative things.  I know that you all don't always want to hear happy, positive stories.  I know you really want to hear about how I truly feel from time to time.  Right now I am feeling pretty sick and tired of being sick and tired.

Doing too much with too little.

A fellow cancer assassin and I had a short conversation on facebook this morning about feeling tired and lethargic from treatment and wanting to do too much.  This is something that is always on my mind and I thought it would make for an excellent blog post, so here goes.

I have always been proud of my ability to get things done.  I am a multi-tasker at heart, an organizer, a cleaner (love a clean home) and just a "doer" in general, often trying to fit in a hike or climb in with all the rest of my daily "chores".  Basically I think that when I was diagnosed last March and knew that the statistics for my survival of even one year didn't look too good, something inside of me shifted.  I had this deep down feeling that I just had to do it all, see it all, experience it all, not missing or letting slip by one single second of my life.  I wanted to take it all in and hold onto it, there were still so many things I wanted to do in my life, so many things I wanted to see, smell and hear.  I went on a binge trying to fit everything in, not wanting to miss a second of it.  Keep in mind this was on top of everything else going on: research about food/cosmetics/household products, or about therapies and treatments that could help me kill the cancer that had all of the sudden become the most prominent thing in my life.

One day I came into the Center for Traditional Medicine for my regularly scheduled nutritional IV, my friend Susan (another fellow cancer assassin) was there and as usual we started talking about all the things we were doing etc.   She realized that I was completely exhausted (something that I am not good at telling myself) and suggested that I slow down a bit.  At first I was like "No way! I've gotta see it all before it's too late!" It was at this point that Susan gave me a little bit of advice that has completely changed the way I look at my time, energy levels, and priorities. I want to share it with you all, even if you don't have cancer, because it is so worthy of sharing.  It goes a little like this:

Susan explained that I should look at my day and energy levels much like a tank of gas.  I know that I have a certain amount of energy each day that oscillates wildly when I get chemo or an IV (less energy then).  From this I can sort of plan the things that I want to do that day.  Prioritize the most important things or the things that you really want to do (don't forget that even having FUN expends your precious energy too) and do those first.  If you have any energy left over after that then you can decide exactly what you want to devote that energy to.  Simple huh?

For me, I know how much energy I will have to do things each day.  Usually for me preparing food and the regular duties take quite a bit of energy, especially after chemo.  I know that I want to get to the climbing gym or out on the crag so I save some energy for that (perhaps blow off vacuuming or dusting that day for some fun instead).  Basically I think that this bit of advice helps me to know that I do indeed have a limit.  As much as I don't want to admit it, and as much as I want to do it all, I just know that if I do I will be paying for it the next day as I lay on the sofa until 2 or 3 in the afternoon completely exhausted, OR my liver is hurting and most likely it came from overdoing it the day before and not taking some of my energy and time to take care of myself first.  I know just how important it is to have the energy to fight this stupid cancer and if I use it all up cleaning the house or doing other things I wont have any left to fight.  That is just not acceptable in my world.  I truly feel that my cancer was partly caused by too much stress (or at least amplified by it).  Chinese medicine says that the liver is where we hold resentment, anger and stress, no wonder mine ended up compromised!  So these days I try to live as stress free as possible, for my own sanity and for my health.  I realize that I have a certain amount of energy every day and I try to plan accordingly.  Sometimes I still overdo it, but at least I can now realize when that happens and try to prevent it from recurring.  I still get frustrated, VERY frustrated that I cannot do all the things I want to do and that my brain has turned to mush from chemotherapy.  I cannot concentrate on anything most of the time (even 1/2 hour sit-coms on tv) and I constantly lose my train of thought and for the life of me I can never ever seem to find the word I am looking for.  Those things frustrate me more than I even know.  But out of all of this crap, this is the golden nugget that I have come away with.

I deserve to be healthy.
I deserve to live a stress free life as much as possible.

I try to look at these frustrations and find something good in there like this:
I now have the time for myself, time to rest as much as I want, time to take care of me.  So what if I can't remember things sometimes, that just keeps it from getting old and hey, I save a ton of money on movies because I don't remember watching them so they are all like new releases to me :)

It is easy to get lost in all the overwhelming things that cancer brings into your life and to feel so very deflated, defeated, lost and alone.  I am not going to say that this doesn't happen to me, because it does.  I throw myself a huge pity party from time to time and I am not ashamed to say it.  It feels good to get it out and rant and cry and scream at the unfairness of it all and THAT is important.  Getting it out prevents me from "holding it inside" and creating more avenues for cancer to thrive inside me.  I am not saying that anyone, including myself, needs to go around with a smile and nothing but positive things to say, that is not only absurd and ridiculous but it will eventually backfire and leave you feeling even worse later.  I am only suggesting to slow down, enjoy what you enjoy, no one can do it all at once.  All those things you didn't get to will still be there tomorrow, and who knows, perhaps the extra time will make doing what ever it is that much easier later.

I hope everyone is having a wonderful Monday!