Would you like some WHINE with that?

Wow!

It's been a while since I have posted, over a month.  Things have been extremely busy, hectic, emotional, and tiring lately...so much so that I have not even had the energy to make a new blog post.  Here is a little forewarning that this post could be all over the place (much like my brain) as there are lots of things I want to share.

Sausage making with my uncle.  Its more fun to make than to eat.

I hope you all had a wonderful Thanksgiving.  Mine was spent packing up boxes full of my belongings with my mother.  The next day (black Friday) we spent the day moving all of those boxes into a storage unit.  I am moving out of my current home soon.  I cannot afford to stay there boyfriend can't support the two of us, especially since he is a student and is currently not employed.  So I am currently on the wait list for public housing.  I am at the top of the list actually.  I get "priority" because I have a disability and condition that no one expects I will survive more than 12 months from.  Isn't that lovely?  This public housing will cost me 30% of my paycheck....which is a modest $674/mo meaning that it will cost roughly $201....so I am supposed to somehow live on $447/mo...yeah, right....gas, car pmt, insurance, phone, utilities, FOOD, cat supplies....you see where I am going here.  Obviously this isn't going to work either but I guess I will cross that bridge when I come to it, which will hopefully be sooner than later....

Cancer Can Suck It!

Cancer is a bitch, really it is.  It not only destroys your body and mind, it also wreaks havoc on ALL of your relationships and friendships often destroying them as well.  People get tired of taking care of "cancer girl" all the time and become resentful.  After all, "cancer girl" gets all the attention, even though she did not ask for it and just wishes that things could somewhat resemble "normalcy" once again.  It really fucking sucks to know that you are lame and screwed up in the brain and weak and too skinny and forgetful and nothing tastes good, and there is no energy to stand in the kitchen and cook and you have no money to order food anywhere anyway.   I pretty much have been living on yogurt and granola for the past 4 months or so...I would LOVE to have some subscription to some sort of "pre-made" meal service or some stock of yummy meals in my freezer so that on those days (and there are MANY) that I don't feel like cooking (often cooking food makes me nauseous and I no longer want to even eat it) so I could just pop a pre-made meal into the oven and rest while it cooks itself.   Wouldn't that be awesome!  Perhaps Santa will leave that under my pillow this year (can't afford a tree this year, let alone any presents)....

Life now is obviously not what I would have expected it to be.  I was in grad school working on my second masters degree only a quarter away from graduating for the second time when I got the diagnosis of the big "C".  Things were looking so great for me and my career.  I was supposed to be doing something that I loved and was passionate about but instead I sit in chemotherapy killing cancer (and many other good cells like brain cells, white and red blood cells, bone marrow cells, etc) and wondering how I am going to pay my bills, where I will move to, when I will ever get to move, if boyfriend and I will have another stupid argument about nothing at all because there is a larger underlying issue that we can't seem to get past, and if I will have the energy to take care of myself for another day/week/month.  I constantly worry about not getting enough to eat, enough exercise, if I took my pills today, if I am forgetting something important, if boyfriend still loves me or if he is finally tired of all the cancer bullshit yet.

So I am in limbo...in every way.  Limbo, waiting for housing to open up....Limbo, waiting for CT scans PET scans, getting chemo because no one knows what else to do because NO ONE has ever had such success in battling cholangiocarcinoma and they are stumped so lets just keep on administering chemotherapy because her symptoms aren't "that bad" comparatively speaking.  Limbo, waiting to see if things will get better hoping and PRAYING that the next scan doesn't show growing cancer cells.  Limbo as you wait for your life to start again instead of going from doctors appointment to doctors appointment and life revolving around healthcare.

I also had the WORST vet appointment ever last week at the Fremont Vet Clinic in Portland.  Seriously, DON'T TAKE YOUR ANIMAL THERE unless you want to have them TORTURED by their staff.  They are by far the absolute WORST vet clinic I have ever had the misfortune of visiting.  They did not listen to my requests or advice regarding my cat (who only has a very limited window of time before she becomes very very angry, hissy and extremely stressed and unpleasant.  They completely ignored me and my concerns.  They came at my cat with a bright orange towel (my cat doesn't tolerate towels coming at her) and ignored me when I told them that the towel would only make her behavior worse.  I expressed my disappointment and concerns in a very calm way at first, then as I heard my cat screaming through TWO CLOSED DOORS I lost my patience.   The staff were all lolly gagging around the back room while this was going on and as I waited for half an hour before we even saw the vet in the first place.  They did not even get to trim some matts off of her belly or trim her nails because she was so worked up.  They then proceeded to call me the next day with blood test results, told me she had a hyperactive thyroid and that she needed medication and then the doctor proceeded to HANG UP on me!  No once did anyone ever admit that they could have handled me or my cat with more respect nor did they apologize for being half an hour late with my appointment.  They were too high and mighty to do that.  I made an appointment with a holistic vet in Hawthorne the very same day and I must say that they are excellent and would highly recommend the Hawthorne Vet Clinic to anyone in or near PDX.  There is NO NEED to put up with "holier than thou" vets such as the people at the Fremont Vet Clinic, and your animal does not need to be tortured by these beasts either.  If this is your vet, do you pet a favor and take them right away to the clinic on Hawthorne where you AND your animal will get treated with respect and compassion rather than with poor attitudes and bad practices.

I really hate to whine and complain but the times are ripe with disappointments and let downs lately.  The bright spot is that ski season has started and I have already been skiing twice in the month of November! THAT I am not complaining about...

On another note, here is my Christmas wish list....

Trader Joe's gift cards (for groceries)
Fred Meyer gift cards (for groceries and household supplies)
Costco gift cards (for some groceries and household supplies such as cat litter and pee pads)
New Seasons gift cards (groceries)
A massage (it would feel oh so good!)
A trip to the dentist (Dr Perry Jones in Ballard (seattle WA) for a teeth cleaning
Pre-made meals or a subscription to someone who does this (for those times I have NO energy to make food for myself which is OFTEN)

As you have probably been able to tell from all of my whining in this post, things have NOT been very fun or easy lately.  Luckily the house guests are gone now and there is a tiny bit of peace in our home...however we are left with a bunch of stuff (furniture clothing etc) and LARGE utility bills to pay due to it all, along with all of the broken things that were left in their wake.  Fun. Just what I wanted/needed....more stress, gee, thank you...Housing please come through soon!!!

Just when you think things couldn't possibly get worse and you have finally found the bottom of that pit, they do and the bottom falls out anyway because you weren't really at the bottom yet....I guess....Some days are harder than others and some days are extremely emotional thanks to the drugs and the stress.

But somehow things always find a way to get better, it might take a LONG time sometimes or at least it feels like it takes forever but it does eventually happen.  I think, for me, I need to take things slowly and realize that I only have so much energy and that I need to decide what to spend that energy on...like skiing and cuddling my kitty girl!

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.

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.  

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 it....like 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

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!

Another great article about mesothelioma from Allison Kahan

So I must be on a roll today, getting to all those things that I have been neglecting.

I used to work for a municipal water department where we often dealt with asbestos concrete water pipes (yes your water most likely travels through an asbestos pipe, makes you feel all warm and fuzzy inside doesn't it) so I always had concerns about asbestos.  We had to suit up in these white suits to handle the pipe and always keep it wet so the little particles didn't become airborne and float into our lungs.

This is a great resource and article written by Allison Kahan from Asbestos.com regarding mesothelioma, cancer, nutrition and other therapies that help than just the "chemo" "radiation" route.  These are important to us not only for our direct health benefits, but also important for our mental and spiritual health too which plays a huge role in our recovery and fight against cancer.

I hope you enjoy.  Here is the link to Asbestos.com for you to peruse.

Here is Allison's article, I hope you enjoy it and find it informative.

When Laura asked us to contribute a blog for her website I was more than excited!  Laura’s story is extremely inspiring!  I’d like to start this blog entry by congratulating her on such an impressive and miraculous victory against cancer!  Laura, you are a fighter! But, most of all, you are a survivor!

Cancer comes in many forms, stages, and sizes but some things are the same throughout - the experiences endured are scary and life changing.  Some say it’s situations like this in life that really open our eyes and make us appreciate everything even more than before.   In her “About Me” section that states, Laura asks “Why is it that only when we are faced with death that we truly begin to live?”

Laura was able to beat her battle against cancer by going back to the basics.  She turned her life around by eating organic, non-processed foods; taking supplements; exercising; and focusing on being as healthy as possible.  Alternative therapies are beneficial in coping with all kinds of cancer, not just liver/bile duct cancer like Laura.  Mesothelioma, another rare kind of cancer, has also been known to use alternative therapies to help with the pain and general health associated with this cancer.

Different forms of alterative therapy include:

·       Acupuncture

·       Aromatherapy

·       Chiropractic care

·       Massage

·       Meditation

·       Yoga

·       Supplements

·       Pet Therapy

·       Tens Therapy

Many times, acupuncture and massage are used for mesothelioma patients as “complimentary medicine.”  This kind of medicine is used more to treat the entire person as a whole and not just one problem.  It’s a routine of different therapies that hopefully in combination with one another will help heal the condition at hand.  This is very much like what Laura did to help her body fight against cancer.  Lifestyle changes are becoming even more imperative than just taking medicine and hoping you will get better.  Many doctors are now encouraging their patients to try this type of healing in hopes that it will help in conjunction with the medicines they provide.

Nutrition is not only important for the average person but even more beneficial for cancer patients.  In some cases, nutrition can help improve a patient’s prognosis.  This is not always easy in light of the nausea associated with chemotherapy treatments and/or surgeries.  High protein, nutrient-dense diets are best for mesothelioma patients; they should avoid highly processed foods with sugar and preservatives.  Additionally, taking supplements are also a great addition to the altered food choices.  A few of the most important supplements include vitamins, minerals, herbs and amino acids.  Ginseng, flaxseed, garlic, grape seed extract and St. Johns Wort are a few of the most popular forms of supplements used.

Our website offers an extensive listing of information regarding alternative and complimentary care for cancer patients.  We are constantly updating our Twitter and Facebook with stories and news articles related to asbestos/mesothelioma.

Exercise and Cancer: A great article written by David Haas

I must say I have had this article for a few months now, meaning to post it but just either forgetting to or having so much going on in my life that I didn't.  Today is the day!

A blogger friend sent this to me and it is so very true and actually a great resource for those who are struggling with cancer.  I want to also say that I know first hand that it is hard to always get exercise, especially when you are not feeling good from treatments etc.  But it is so very important.  There will always be those days when you cannot peel yourself off of the bed/sofa but that is OK.  On those days where you do feel good enough to get up try to get even a little exercise.  Go for a walk, do a little yard work or house work.  Even the smallest of things can get your body moving and feeling good or at least a little better.

And for those of you out there who haven't been diagnosed, exercise is just as important! It helps prevent cancers or at least keeps you healthy so that your body is able to fight it off. Keeping ourselves as healthy as possible (cancer or no cancer) is oh so important to our overall health.

I hope you enjoy this article as much as I did.  Kudos to you David and thank you for sharing this important piece of information with us all!  I have also posted a link to David's blog for you to enjoy.

The Power of Fitness

According to research presented by the National Association of Physical Activity and Health, an active lifestyle may prevent cancer deaths in men. Similar studies suggest the same is true for women with certain types of cancer. In fact, the American Cancer Society contends that exercise, even in small amounts, may be beneficial. As helpful as a fitness routine may be, it is not meant to be a substitute for regular cancer treatments.

Exercise may help with some of the possible side effects of some types of cancer such as lung cancer, liver cancer, breast cancer, and even a rare and usually terminal cancer such as mesothelioma. Even just walking around may prevent blood clots in the legs. Exercise may also reduce fatigue in cancer patients. Patients who exercised on a regular basis before their diagnosis should continue to do so after their diagnosis with consent from their doctor. Many doctors believe that exercise can help improve one’s life expectancy.  For example, Mesothelioma life expectancy is typically 1-2 years after initial diagnosis, but some patients live five years or more from the time they were first diagnosed. A European study found a link between reducing consumption of red meat and a reduced risk of colon cancer. The study suggests a diet rich in vegetables, fruits and whole grains to reduce the risk of prostate cancer.

Some studies suggest a link between physical exercise and a lower risk of rectal and colon cancer. Exercise has also been shown to display a reduced risk of ovarian cancer in certain studies. It's hard to confirm a definite link between fitness and cancer because so many factors are involved, but several studies have found several health benefits of staying in shape or starting an exercise routine. Additional studies have found a correlation between exercise and a reduced risk of breast cancer, prostate cancer and lung cancer.

Adopting a fitness routine may also be beneficial following cancer treatment. There is significant evidence to suggest exercise may help prevent various types of cancer, but studies show a steady fitness routine may also help recovering cancer patients’ deal with the side effects of treatment. Cancer patients who have recovered may also benefit from regular exercise. Recent studies suggest a connection between regular exercise and a reduced chance of recurrence. General benefits of exercise include improved mood, increased self-confidence, reduced fatigue, lower risk of cardiovascular disease and reduced risk of diabetes. Patients should talk to their doctor before starting a regular exercise program.

By: David Haas

Today is a good, good day!

Last night, for the first time without actually having to, I set my alarm clock for 7am.  Usually I just hit the snooze button a time (or ten) before I actually get up.  Luckily I was using an alarm clock that I was not used to and couldn't find the snooze button, so up at 7am I was.  I made my usual cup of Earl Grey and decided to wake up a little by pulling some weeds in our very neglected front yard.  That actually did the trick and what a way to wake up, smelling all those broken green weeds.  I love the smell of plants, especially tomato plants!

Anyway, today I have an appointment at the Center for Traditional Medicine and it happens to coincide with my friend Susan's appointment and I am so excited to see her!  We have kind of a "girl" day planned. After our appointments at the CTM I will be accompanying her to some more doctors appointments. That is what happens when you have cancer, always some doctors appointment, always.  As a matter of fact your doctors appointments and chemo and IV's etc are what you revolve your entire life around.  Someone says "Hey! What are you doing tomorrow/next Tuesday/next week/etc. and you can't really say if you are going to feel good enough to do anything, that is IF you don't actually have an appointment that day.  It is strange as you watch yourself deteriorating.  Your memory going south, you can no longer multi-task or even single-task because you forget that you were even doing anything at all.  You are all of the sudden that "flaky" friend that gets on everyones nerves because you either forgot (chemo brain) that you had a date with someone or you didn't anticipate feeling like crap so you have to cancel.  Even your partner/caregiver gets annoyed because you are not the same person you used to be...

At least if you had dementia you wouldn't know you were so flaky and that your brain is turning to mush and your emotions are all over the chart most likely in big part from the all of the drugs coursing through your body, but you also wouldn't be able to notice that you are slowly going crazy.  But actually knowing and seeing yourself become this person (moody/flaky/etc) is a hard thing to handle, especially if you used to be proud of how well you could handle complex situations and your organizational skills.  Gone...Now I am a moody, flaky person who somehow always is able to see some positive in even the nastiest of situations, cling to it for dear life, and make even the most trying of days in to really good ones.  You have got to, otherwise you would just fall down into a deep dark bottomless hole, and climbing out of that would be even harder.  I think I will chose to step around it.  Maybe one day this hole will be filled in, covered up, boarded up, and "KEEP OUT!" signs placed all around.  Or perhaps one day this ugly hole will fill up with flowers and those yummy smelling plants I love so much.  Yeah, that is what will happen!

As a good friend of mine says, "Today is a good, good day!"
Love you Bills!

I'm an anomaly...great! Someone told me that ALL miracles are anomalies!

Well, the appointment with my oncologist Dr Shao was a little disappointing and bubble bursting...
He is not convinced that all of the cancer in my liver is dead.  His comment was that CC is super slow growing so it is not surprising that it did not show up on the PET scan.  I am all in agreement that I would much rather be safe than sorry so I am continuing to get my normally scheduled chemotherapy treatments every other week (although I do have a 3 week break right now, woot!) and in 3 more months we are going to do another scan to see whats going on.
In the meantime, I will be speaking with all 3 oncologists to see why each one has a differing opinion...That will be interesting.

So I guess that that piece of paper from the official PET scan report that said "IN REMISSION" was just a teaser after all....It is NOT official yet....But in my mind I KNOW that I am kicking some cancer ass.  Just because they have never seen anyone react so positively before and just because NO ONE has ever cured themselves from stage IV INCURABLE, INOPERABLE cholangiocarcinoma, my job has suddenly gotten a lot harder.  Not only now do I have to kick cancer ass, but I also have to convince the medical world that it can be done.

I've got a message for them and for stupid cancer.

I AM JUST THE WOMAN FOR THE JOB!

...so some (most) believe it can't be done, that is my motivation to prove them wrong

My mom knows this well enough...

If you want me to do something, DON'T keep asking me to do it
LIKEWISE
If someone tells me 1 million and one reasons why I can't/shouldn't/it wont work/you'll never make it/etc then you are damn straight that I will make it my personal mission to prove them wrong.  This is no exception.

Like I have said before,

Cancer Can Suck It!

...and by the way, it has been quite the emotional roller coaster hasn't it?

CANCER CAN SUCK IT!

I am going to write a more lengthy post about this a little later this week but for now I just have to share my news to those of you who may not have heard yet.

After my appointment with Dr Perkins the surgical oncologist on Monday I had another PET scan on Wednesday and an appointment with a radiological oncologist named Dr Jason Bauer who was planning to administer Yttrium-90 direct radiation beads the size of a grain of sand through a catheter, about the size of a human hair, inserted into my groin and threaded through veins and such into my liver.
He came into the exam room, introduced himself and immediately began complementing me on how great and healthy I looked in spite of having extensive and aggressive stage IV cholangiocarcinoma.  He commented that he was close in age to me as well as Dr Perkins (the surgical onc).  He was basically in awe.
Then it happened. He got all serious and told me that he really wished he could help me with his miracle treatment but he just can't.  The reason he can't is because the PET scan (this makes the only one I have had since my first diagnosis last March 24, 2010, yes that's right LAST YEAR) shows that I have

 NO MORE BIOLOGICALLY ACTIVE OR LIVING CANCER IN MY BODY!!!

So what does this mean??? it means that I am officially 

IN REMISSION!!!

One and a half years ago I was given about 6 months to 1 year to live.

One and a half years ago I was given a 20% chance to live 5 years.

One and a half years ago my life changed forever.

My priorities became very clear.

Life became very simple yet unimaginably complicated all in the blink of an eye.

Even though it was Friday when I got this news I am still in shock.  It is still sinking in.

I have my regularly scheduled chemo and appointment with my oncologist tomorrow so perhaps it will seem more official then.

I am still going to get chemo for a while to make sure all those  bastards are completely fried and that there isn't one little cell that is still clinging to life to turn into full blown tumors again.

The reason they haven't found this out yet is because they haven't done a PET scan, they figured they didn't need to...the cancer most likely hasn't spread due to the nature of CC and the CT scans showed that they were always shrinking AND no one and I mean NO ONE just cures themselves of severe cholangiocarcinoma EVER and especially in 1.5 YEARS!!!

Everyone is flabergasted, floored and shocked.  They all want to know "What did you do?".

I told them, you all know what I've been doing.  Eating right (no chemicals, no processed foods, organic always, limiting or eliminating all together dairy, and animal proteins, juicing) taking supplements and vitamins, getting nutritional IV's, getting exercise as much as possible when I feel good, HAVING A POSITIVE ATTITUDE, not meaning I am always happy, meaning I always try to find something good, some positive in every situation no matter how crappy it is and how hopeless it feels and how alone and abandoned and scared you are and no matter how it seems and feels like the ENTIRE UNIVERSE is conspiring to your disadvantage, and no matter how much I sometimes HURT both physically, emotionally, mentally, spiritually, etc I just never EVER gave up, EVER!

I also have an amazing support network, very loving friends and family, kick ass, state of the art, cutting edge doctors on my side.

I made these changes in less than a month.  I didn't have the time or luxury to do it gradually.

More later, I LOVE you all and wish you all the happiness and health in the world.

Laura

The Cancer Assassin

Conversations with a surgical oncologist

Monday I had an appointment with a surgical oncologist, Dr Serene Perkins at the Good Samaritan in downtown Portland.  Actually Monday was yesterday, it doesn't feel like yesterday.  It feels like about a week ago. It was a little bit of an emotional day to say the least.  Here is what they said.

The very first thing she said is "You are the youngest patient I have ever seen with cholangiocarcinoma."  My reaction, "I haven't heard that one yet." Both of us with a giant smile on our faces.  I liked her already.  Not only was she pretty and reminded me of my girlfriend Karin from Seattle, but she was smiling and that, for me, is just an instant winner.  If you have ever had to deal with a lot of doctors you most likely have already noticed this, or maybe it is just me, who knows, but it is a pretty rare occasion when your doctor is walking around with a giant contagious smile on her face.  Especially one who's next words were something like this, "I'm going to give it to you straight (again, a woman after my own heart here) I cannot operate on your liver to remove the tumors because every lobe is affected and you wouldn't have any liver left over.  BUT, there is someone I want you to talk to who is a radiation oncologist who has this new (just out of study and now available) awesome cutting edge therapy that I think you should start immediately."  Wow!  At first I must admit that I was disappointed.   I wanted her to tell me that she could operate now and that they can remove all of the tumors and my liver will grow back in 6 weeks and everything would be awesome, that basically I would have a brand new liver!  After all, I was at the surgeon's office, where they perform surgeries talking to a surgeon.  Why would I think otherwise?  Actually, I knew otherwise because Shao had mentioned to me that she wanted to talk radiation, but DANG IT I wanted it to be different.  I knew what to expect, the meeting went pretty much exactly as I thought it would but yet I wanted it to be different.  I wanted the fairy tale story book ending, where crazy miracles happen and young ladies with liver cancer magically get healed.  I know that this is actually great news! That there are awesome doctors out there who are specialists in my type of disease who spend their spare time talking about me and my case wondering how they can help me the best.  I'm an anomaly.  People who get cholangiocarcinoma are usually much older, most often they are men, and often have other liver troubles or other diseases that have led to cholangiocarcinoma (CC, it's a long word folks:).  They are not usually 38 year old, active females who has never had anything more serious than a broken arm when I was about 7 and a little bout with salmonella when I lived at Crystal Mountain back in the early to mid 90's (let's just say that little dorm fridges don't work very well at keeping chicken frozen apparently). The doctors are all very pleased with my progress.  It would seem that I have been doing an unexpectedly exceptional job at assassinating those cancer cells.  Dr Perkins said that I have had an amazing response to the chemotherapy and that people don't usually respond as well as I have but that the effectiveness of the chemo is reaching its end and I am already on the lowest dose possible meaning that I cannot (nor do I likely want to) have a higher dose unless I want to risk other complications such as kidney failure, bone marrow damage, permanent neurosis which I have found to be quite unpleasant and painful, and a slew of other highly undesirable physical and mental troubles.  She is also very optimistic about the new treatment and suggested to me that I should begin it as soon as possible...and perhaps we will be able to talk in the future about surgery. That is what we are hoping.

The therapy....so far what I know (which isn't that much yet as I have not been scheduled to see this new doc yet) is this and it sounds scary but very effective so sign me up.  As I see it (I'm always trying to find the positive in even the crappiest of situations) this is an option that wasn't even available to me a year ago, I am making progress! Now it is proven!
The treatment is called Yttrium-90 and it sounds like a good thing to me.  The doctor that I will be meeting with is the only one in the city that does this treatment and he also just happens to be very highly recommended and respected by the surgical oncologist being a pioneer of this promising treatment.  Yes, I said promising...
I am not going to lie or pretend to be all tough or uber-optimistic right now, I am a little bit freaked out.  Catheter?! Where?!!?! Radiation actually inside my body! Crazy! Insane! Even though as crazy and insane and scary as having a catheter inserted through your pelvis into your liver so that you can feed radioactive spheres into your liver to kill cancer cells sounds the thing that scares me the most is that this actually sounds promising to me.  I am becoming hopeful that this will be the thing that delivers the last punch to those rogue cells causing havok on my body and my liver! The scary part is if I get let down...we all know how it feels to be happy and hopeful about an anticipated outcome of a situation, most of us also know how it feels to be let down in such occasions and how devastating this can sometimes be.  I mean, look at how much I got freaked out yesterday at expecting to have surgery (you know the happy ending where they cut it all out and my liver is happy and cancer free) instead of radiation and catheter that is uncertain, invasive and scary.
Actually I worry about being too excited or overly hoping for a certain desired outcome (of course never trusting or being fully present for the process what so ever) pinning everything on it and having it be ineffective, thus rendering me a blubbering, irrational, emotional slob for a few days/hours reminding Jeff how lucky he is to be with me...

Or better yet, I can focus on all of the positive! All of the awesome specialists and doctors and nurses I have looking out for me, talking about my case, trying to figure out what they can do to help.  Instead of feeling like the situation is crappy and lame because I am the "lucky" individual who happens to get a rare form of cancer at a young age....I can see it as at least I am "lucky" enough to be young with a rare disease that catches peoples attention and, much like House, provide them with a strange and interesting puzzle that they are dying to figure out.  I am "lucky" enough to have some awesome doctors on my side, my team, which happens to be comprised of specialists, natural and traditional medicine, awesome nurses and aside from all of the titles and formalities just down right good, no, AWESOME people I have working on my side, fighting for me!  This is how I would rather see it.  My choice is the positive.  I decided long ago that I was not going to waste my time and energy on worrying about all the things I may not get to/can't do.  I would rather spend that energy on doing it and making sure it will happen.

Cancer Can Suck It!

Some News!

My apologies for the lengthy delay in posting, however I have been having so much fun lately! My trip with my mom and my aunt to Cabo catapulted me into summer vacation mode.  I have spent more time lately away from internet and phone service than I have spent within service areas and more time in the Westy than in my own bed at home and that is definitely a good thing!

I have mostly been home for appointments, both chemotherapy and my nutritional IV's.  Some sweet angel (I'm not naming names but THANK YOU SUSAN!) generously put $200 on my account at the Center for Traditional Medicine and that pays for more IV's and some vitamins that I cannot get on Amazon such as Maxiflav.

9000' on Mt Hood Cooper Spur

So I went to my regularly scheduled chemotherapy appointment on Tuesday.  I had a scan just the day before (Monday) and Dr Shao rushed the results so that we would be able to read them during my appointment.  Someone went home without finishing their work that night and we only got to see the images without any official report on size etc.  The images told the story though.  The tumors are still visibly shrinking (not so much anymore though) so that is great news! I had my routine chemo and came home feeling pretty toxic from Monday's CT contrast and from the toxic chemo cocktail on Tueaday.  I am pretty sure I slept most all day yesterday finally getting up to fix some food at about 4 or 5pm.  I was wiped out! Wednesday afternoon in between slumbers I get a call from Dr Shao.  I am expecting it is him telling me the official results of the scan since we didn't get to see it the day prior.  But it wasn't, it was much better!
He has been speaking to a surgical oncologist named Dr. Serene Perkins (check her out, I've provided a link) who has become very familiar with my records and condition.  She happens to be a specialist in bile duct and liver cancer as well as a transplant specialist.......hmmmm......sounds good to me!

Cooper Spur

Awesome poppy field somewhere in northern Utah

Dr Shao explained to me that he thinks I have received most all of the benefit I can from the chemotherapy and thinks that this is the next logical step.  I have an appointment on Monday to speak with her about what she has in mind.  I will keep you all posted!  The thought of surgery scares me, really scares me.  But the thought of having the cancer gone, my liver healed, my health recovered, and a new shot at the most healthy life anyone has ever lived not taking even one second for granted!

YOU all have been my support, my scaffolding upon which I draw my strength. You all help me out when I am penniless and in need of medication so that I can feel somewhat like a "normal" person.  You give me that strength to get up the challenging rock climb and it is your voices and prayers that I hear whenever I am not certain about the future or when I am feeling like death is lurking nearby.  Thank you so much!

In Mazama :)

This is one of my favorite "feet" pictures ever! I love watching the change in the landscape on long road trips.  The geology of our country is pretty awe inspiring and I am so glad I had a chance to see it again! I will be going back for sure!

Awesome secret "locals" swimming hole in Moab.

I crammed myself into the Twirlybird and only since looking at the pictures have figured out that it most likely really worked! I shoulda put some money in it!

The delicate arch in Moab.  Beautiful!





Me and my fire...I love to build a campfire! We cooked sweet potatoes and fresh corn roasted in the husks for dinner this night. Who says road food has to be bad food? You just have to be creative!

Stoic Clark at the beach.

The BEST (and maybe only) thrift store in Moab!

Joe Wilson Arch

On the rail to Cooper Spur

The awesome Mr Stewart and me

Here are some of the pictures from my latest adventures.  Since Cabo I have been on a road trip with my mom to see my good friends the Stewarts in Newport WA, on to Montana, into Idaho, Utah, Nevada, then back home through Oregon.

Jeff and I also spent a week up in Mazama near Winthrop and Twisp, WA.  It was beautiful and we had the campground to ourselves for 3 or 4 out of 5 or 6 days we were there! It was climbing heaven! It was also so peaceful and beautiful! The little swing I found out in the middle of the woods near a trailhead.  I expected to see fairies!

Strong and Healthy!

Next was a trip to Leavenworth, WA for some more climbing.  Once again climbing heaven! One of the only people in the campground most of the time we were there (all of the other campgrounds were almost full, but no one caught on to our little secret!).

There are days that I feel like doing nothing at all, days I don't have the energy to even make food for myself or get up long enough to do just about anything.  Then there are those days that I feel great! On those days I get out and take it all in, the smells, sights and sounds.  I want to hold it close and never, ever forget it.

We've got a little catching up to do...

Mom and I at SeaTac bright and early excited for Cabo in a few hours :)

Wow! It feels like forever since I have posted.  I will try to give the condensed version then I will elaborate some on the exciting stuff, sound good? So, grab yourself a nice cup of tea or juice or a smoothie, kick your feet up, sit back, relax and enjoy the story :) I hope you like it :)

The trip up to Seattle to meet my mom was nice.  I got to stop in Tacoma and visit my friend Tiffany, we went out for a nice lil hike through the Point Defiance park, very similar to Forest Park here in PDX or Discovery Park in Seattle.  We took her dogs Carbon and Halle and had a very nice time.  Her husband got off work a little early and we were all able to hang out a bit before bed time, THEN he made us blueberry pancakes for breakfast the next morning, YUM! Thanks Jay! The next time you are here I will make some for you ;)

My whole body is in the shade from
my giant sunhat! It's awesome!

Then it was up to Seattle via wonderful Tiff & Jay to my mama's house in Ballard we made last minute errand runs to REI and Whole Foods for various items.  We wanted to bring food with us so we wouldn't have to eat out every night (it worked brilliantly!) pack good (not full of chemicals) sunscreen in the checked baggage so we wouldn't have to use the icky stuff (we were betting that any we found there would be full of chemicals and they were) and exchange some stuff at REI that wasn't working out for some stuff that worked out wonderfully, suck as my awesome white sunhat that has a tie string inside it so it is infinitely adjustable, it is 50 SPF, it is white so it stays cool and reflects the sun, and it is BIG and wide so it actually covers my shoulders too pretty well and that is great cause my shoulders get fried usually.  But I also am a strict sunscreen user and re-applier, so as much as I love the sun I also am safe about it...I figure I've got enough problems to deal with and don't need to add melanoma to the list.

At SeaTac getting ready to find our gate :)

My favorite person I met in Cabo, Fausto

Then it was SeaTac bright and early (5:30am) to catch our connecting flight in LA, and it was first class :) My uncle had so many air miles racked up from his previous job and they were going to expire so he let us use them for transportation for me, my aunt and my mom to and from Cabo San Lucas.  My aunt has a friend who owns a time share at Pueblo Bonito in the Sunset Beach Resort/Spa on the Pacific side of the peninsula, so it was very reasonable and split 3 ways equals next to nothing as far as $!!!  It was absolutely beautiful! I felt like I was on fantasy island or something, it was so pretty! Sunset Beach is really classy and I was very pleased

In the carrito with our favorite driver Fausto.

to be a guest there and hope to be able to do it again in the future. I have never been waited on hand and foot as I was at their resort.  The service was truly wonderful and the staff was so nice.  I met someone named Fausto and he was a carrito driver.  The roads in the resort were windy and steep running up and down the hillside connecting all the buildings, shops, restaurants, pools, cigar bars, lobby, spa, chapel, jewelry store, salon, deli, etc together.  He came to pick us up on the first day of our stay there.  We told him we had just arrived and had not seen around the complex yet and he gave us a wonderful little quick tour! He showed us the peacocks, the flamingoes, the sky pool up at the very top of the mountain that has a 360 degree view, all the other pools and restaurants and shops and pointed out the owners home on a nearby hilltop complete with putting green and heli-pad.  For the entire time we were there whenever he would see me he would say or call out "Hello Laura! How are you today?" ALWAYS remembering my name!  He was so friendly! Fausto, if you are reading this, thank you so much for making our stay in Cabo even more special and friendly because of you and your kindness.  Sending well wishes of health, peace, love and light to you and your family. Keep smiling and making peoples days, you are great at it!

Here are some pictures of the resort and its windy roads that are just big enough for the carrito to fit on with maybe a ped or two on the side.  And a nice picture of the sky pool....ahhhhh

Carrito

The windy roads of Sunset Beach 

The Sky Pool

I will get you started with this installment for now, it is 2am and even though I am not tired I am going outside for a quick walk around the block so that I may be able to come back and get some sleep.  Amazing what fresh air can do for you.  More soon! And if you are one of the two people still waiting on your mobile (you know who you are) it is coming very very soon...i apologize a million times for my tardiness in getting those completed and out to you.  I have not forgotten though :)