Monday, October 24, 2011

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.

12 comments:

  1. I hear you. I've been pretty much the same way this past month and washing sheets constantly is gross and ridiculous. What are you doing to detox? Coffee enemas? If you do have lots of stuff wanting to come out, this will help it along. They really aren't bad. I had some initial hiccups, but once you get started, it's pretty simple. I know that's changed things for a lot of people. I just started, so I can't say for sure yet, but I know it can be a big aid. Take care and chin up! :)

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  2. Thanks Shanna!
    I haven't done those yet, originally it was suggested that might not be the best as my liver might not be able to handle it since it is so compromised already, however it is now something I think that we should consider again. I've also been spending more time considering the Gerson therapy too. I think a lot of it stems from stress as well. There has been an excessive amount of stress in my life lately and I am making steps to change that. I've got my chin up as high as my body will let me :)
    Sending you tons of love and health.

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  3. You are going through a rough time, indeed. I'm glad you feel comfortable enough to vent about the negative things. Hearing all positivity is not exactly reality.

    I'm so glad your docs and medical staff are so wonderful. That is excellent. I hope you feel better soon and keep writing about your experiences.

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  4. I hear you CA. Sometimes you just have to tell it like it is.....good or bad. I'm sorry you're having such a hard time of it right now. Hang in there lovely.

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  5. Your feelings are so valid. You must feel a bit let down. You get this wonderful news, YOU DID IT!, but oh wait. You still have to go through the shit. You aren't finished yet. Still more chemo, more fatigue, more itching, more night sweats. It's not over yet and you can't quite celebrate. Yes, it's great news that you are getting there and this terrible ordeal is actually working. Yes. Wonderful news. But it's a bit like telling a person in a life boat that they'll make landfall soon, even when all they can see is the endless ocean. I'm glad you got this off your chest. Just because you are the awesome cancer assassin Laura York, doesn't mean you have to be positive all the time. Be authentic. Be yourself. Do what you have to do. And if you don't mind me saying so, why do you have house guests right now?

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  6. Well of course you are sick and tired of being sick and tired! My gosh, you have been going through so much. I'm sorry it's been extra tough lately. Maybe things will improve a bit soon. I sure hope so. My best.

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  7. Thanks for sharing your true self with us Laura. You have been so brave . . .please don't ever feel the need to take care of us too. You have way too much on your plate taking care of yourself. We can handle the yucky stuff. I will pray for strength and healing for you. . .love and BIG HUGS!

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  8. Thank you everyone for understanding just how hard it is sometimes. I wont lie, it's been really rough lately, but I am pretty tough myself and luckily I love lemonade which is a good, good thing because it looks like I will be making a lot of it with all of these lemons I've gotten lately. :)
    Again, YOU all are MY inspiration. YOU are all so wonderful and I want to thank you from the very bottom of my heart for your support and love.

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  9. Laura,

    You are a real inspiration! You're on the right path and doing the right things.

    Have a totally awesome day! :)

    Ron, from My.CrazySexyLife.com

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  10. Hi Laura, whine away when you gotta get it out! I just came across a new article I thought you might like: When Cancer Disappears: The Curious Phenomenon of "Unexpected Remission"
    by Kelly A. Turner, PhD (http://www.noetic.org/noetic/issue-seventeen-december/unexpected-remission/)

    Also, maybe it's naive of me to bring this up to you at this time (for about 100 reasons), but just in case it's helpful, I was impressed and inspired by the book Outsmart Your Cancer by Tanya Harter Pierce. If you look at the Amazon reviews, you'll see I'm not the only one.

    Liz,
    NaturalCatCareBlog.com

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  11. Thanks Liz!
    I will check these things out. They sound like good reads that I might be able to get some insight from.
    I appreciate the link/info.
    All the best!
    Laura

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  12. Oh, I just found a PDF of Outsmart Your Cancer online (not sure why!) --this is handy if you want to take a peek at it before investing any cash. http://www.willow-run-media.com/Health/eBook.pdf

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