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.

Monday, October 10, 2011

Guest Blogger, Trevor Bradshaw talks about mesothelioma.

Great little exhibit at the OMSI about nanotechnology.
Since we are getting tormented by pink everywhere we look and since most of already know that October is officially "Breast Cancer Awareness" month, I would like to take this opportunity to talk about cancer in general by raising awareness about yet another type of cancer that is equally as deadly as breast cancer but one that doesn't get all the attention (no boobies here)....This is mesothelioma.  I have a very concerned guest blogger this morning who has some great information to share with us.

Many thanks to Trevor Bradshaw for his enlightening and heart felt article about another cancer...mesothelioma.  Please enjoy and much peace, love, light, joy, happiness and health to all.

Mesothelioma and other Preventable Cancers
We are always bombarded with information about how important early awareness is to a healthy cancer recovery, and it’s true you have a much, much higher chance of survival the sooner a tumor is discovered and cancer is diagnosed.  However, there’s an even earlier awareness we ought to pay attention to- the environmental causes of several deadly cancers that could be eradicated completely with the right precautions like mesothelioma. 
What is mesothelioma? Mesothelioma is a rare but deadly cancer of the lining of the internal organs that’s only known cause is exposure to asbestos.  Asbestos, which was once marketed as a wonder material for its cheapness, versatility, and flame-resistance, is made up of small, microscopic fibers.  When these fibers, which oftentimes flake off, are inhaled they agitate the inner lining of the body, called the mesothelium, and even a single microscopic fiber can cause cancer.   
             While you may suspect that because mesothelioma kills nearly 100,000 people worldwide each year the production of asbestos would have stopped but several developing countries including India still use asbestos as common construction material. In fact earlier in this year, even as doctors conducting mesothelioma clinical trials were spending millions to search for a more effective treatment for this deadly cancer, Canada reopened the world’s largest asbestos mine, the Jeffery Mine.  It’s outrageous that if we want to prevent cancer that even though asbestos has been a known deadly carcinogen for years it is still being produced. 
And it’s not only mesothelioma either.  Cervical cancer has long been linked to HPV, a sexually transmitted disease that can be prevented with a vaccine, yet is still one of the most prevalent cancers in the United States. Strong campaigns against cigarettes and tanning beds have proven that people are willing to acknowledge the risks associated with cancer-causing behaviors. It’s time we turn our focus from simply aiming at providing information about the importance of screenings and the early detection of cancer, and start thinking about how we can further work to prevent cancer from occurring in the first place.  

Tuesday, October 4, 2011

October is also liver cancer "awareness" month, who knew?

I recently came upon a website that I found very interesting for those of you out there in the collective cancer family (you know who you are).

It has got some really good resources there for those of us in need and, hey, lets face it we all have a need or two don't we? It is called 1 Up On Cancer and you really should give it a look.

It is chalked full of all the goodness we all so need such as resources on Freebies & Discounts for cancer patients to Tips on Nutrition and cooking for cancer prevention to some NON -CANCER humor to help put a little smile on your face when you most need RIGHT NOW!

This is also a great site that I recently discovered called Is My Cancer Different? and why, YES it is, because we are all different and respond to the same thing in very different ways.  This site has videos that give some good but basic information (and that is good sometimes for us with chemo brain) about how your cancer (no matter what kind it is) is definitely different because you, my dear, are different.  It is also worth a look.

It is something I just couldn't keep to myself.

On the same note there are some really great bloggers out there that I also just discovered and I wanted to share the rest of these in the spirit of October being breast cancer awareness month.  Actually it is also LIVER cancer awareness month (did you know that?) and yours truly has liver cancer....Well actually it is specifically BILE DUCT cancer but because no one knows how to test for or discover it when it is actually in your bile duct it gets written off as being IBS for 15 years before they discover it and by that time it has metastasized to your liver and NOW it gets classified as "liver cancer" because there is no "bile cancer day or month" but anyway, I digress..... back to the great blogs as of late.

I highly recommend checking these out they are right on the money (no pun intended) and call it how they see it when it comes to breast cancer "awareness" and who is really racing to find a cure.  These ladies have all been affected with breast cancer, even metastatic breast cancer and `find no comfort in raising more awareness and ask instead that you give to organizations that really do contribute those dollars to finding an actual CURE for breast cancer.  Heck while we are at it lets also find one for cholangiocarcinoma, and in the meantime I will be trying my hardest to do the same.

Please give these wonderful sites a fraction of your time and consideration.  You will also be able to find them along with other wonderful blogs on my sidebar at the right. If I left anyone out I am sorry, there (thankfully and in a way sadly) are just too many of you great bloggers out there! If I do not have your link on my sidebar please contact me and let me know, I will gladly add it.

Blessings to you all and good health.

Alright Tit, by Lisa Lynch  "The Post I Never Wanted to Write"

The Cancer Culture Chronicles

Pink Ribbon Blues, by Gale Sulik

Boo-Bee Trap

Being Sarah

Uneasy Pink

The Accidental Amazon

Komen Watch

Nancy's Point

Dispatch from Second Base

The Feisty Blue Gecko

I Hate Breast Cancer

Breast Cancer? But Doctor.... I Hate Pink!

Not Just About Cancer

More good things I've stumbled upon recently that I cannot keep to myself because I know they will help someone!

Imerman Angels one on one cancer support

Manage Cancer- Cancer Care Resources