First holiday in swimwear - ughhh/ yeah / ughhh

Love being away from home. Not complaining about my life at home, but being in the same place day in and day out where the proverbial poo hit the proverbial fan, and where I've been trying to clean up said fan, gets a little tiring and somewhat depressing from time to time (rarely but it does happen to the best of us).

I was super stoked to get away and go on vacation, but (again I'm using the word 'but' - I don't like it when people are giving me that phraseology) but this environment of beach and sun and bathing suits is doing a number on my brain. Again, don't get me wrong, I'm super happy to be here and be on holidays, but I can't get away from the reality of what the drugs have done to me in the last year and some. I can't hide in my baggy clothes, and I've been quite stubborn about buying a bunch of new 'phat' (i.e. cool for big girl) clothes, so I'm feeling a little (lot) sausagee, so I caved in and bought a size 12 one piece bathing suit with a little skirty thing to hide all the nastiness. A lot of reflective surfaces here too. Yay (a very sarcastic yay). My new chemo hair is quite lovely too - I'm shocked Holywood hasn't picked up the look yet.

Speaking of hair, I had a great haircut by a dude here in Penticton about six years ago, so I tried to find him. Went to his old place, but it's been sold, and they knew of him, but not his name or where he works. They thought maybe in Summerland. So I called every hairdresser in Summerland to find him and alas, I did. However he is booked until Saturday and can't fit me in. We're leaving Friday. He said he'd call me if he had a cancellation but I'm loosing hope with each passing day. His name is James and his place is called James on Kelly.... if you're ever in the area. I think I might be out of luck though. Probably for the best as I was kinda looking for a miracle, and those are hard to come by these days.

I was just telling Brian that this might sound vain, but all my whining and complaining comes from a different place than vanity. I've been me, the me I know inside and have known for the first 43 years of my life, and this new version (one I don't particularly like to see) is quite shocking to see and be reminded of...it lives on the outside and is the one everyone outside my body sees, and I honestly am surprised every time I see a reflection of myself and see a complete stranger looking back. I'm sure other people feel this way when life throws them a curve and their 'shell' changes, but I think because it happened so quickly might be why it's freaking me out like it is. Everytime I meet someone I want to tell them that the person they are talking to is not the person I think they are talking to, but it's pointless and absurd and my own private little battle.

Oh how things can change

So before all of this started I considered myself one of the healthier people on the planet - statistically speaking. Now I'm uninsurable. Aint that great? We are booking a holiday to the States in September - one last hurrah before going back to work. I haven't really had a significant getaway from this experience, and I am so looking forward to not being  here where it's all happening and being somewhere with palm trees. So now I have to fill out all of these forms to get insurance, and once they're filled out I get told in a not very nice way that not only will they not insure me for any hospital stay related to my current condition (which I would have gladly paid more for, and am certain wont happen anyways because it takes a while for the shit to kick in) but they wont insure me for baggage or trip cancellation or interruption or in case I get hit by a car or have a completely unrelated accident. Uggghhhh! That was one of those little things that set me off. It really bummed me out because for a couple of days there it seemed like it would put a kaibosh on the whole family vacation plan. It also gave me a little face slap about where I now stand in society. That sucks!

And when I feel that way I always go back to being mad about being betrayed by our government health care system for pushing us all to get that stupid H1N1 shot. The people who are supposed to keep us safe and healthy transformed me from being a very healthy, strong, fit woman and mom to a burden on our healthcare system, uninsurable, round, pudgy, balding Wegener's patient.

There is a group trying to get Canada on board with the other G8 countires for compensating people harmed by vaccines. The premise is that there will always be people who will get adverse reactions from vaccines but we all do it for the greater good of the all so they should be compensated. Russia and Canada are the only ones who are still in the dark ages. Here's the working paper: http://www.munkschool.utoronto.ca/assets/files/Publications/keelan_workingpaper_feb2011.pdf

Also some other research to support my theory on the cause of my disease...

The adjuvant? Squalene.
According to Meryl Nass, M.D., an authority on the anthrax vaccine,

“A novel feature of the two H1N1 vaccines being developed by companies Novartis and GlaxoSmithKline is the addition of squalene-containing adjuvants to boost immunogenicity and dramatically reduce the amount of viral antigen needed. This translates to much faster production of desired vaccine quantities.”[v]

Novartis’s proprietary squalene adjuvant for their H1N1 vaccine is MF59. Glaxo’s is ASO3. MF59 has yet to be approved by the FDA for use in any U.S. vaccine, despite its history of use in other countries.

Per Dr. Nass, there are only three vaccines in existence using an approved squalene adjuvant. None of the three are approved for use in the U.S.
What Squalene Does to Rats

Oil-based vaccination adjuvants like squalene have been proved to generate concentrated, unremitting immune responses over long periods of time.[vi]

A 2000 study published in the American Journal of Pathology demonstrated a single injection of the adjuvant squalene into rats triggered “chronic, immune-mediated joint-specific inflammation,” also known as rheumatoid arthritis.[vii]

The researchers concluded the study raised questions about the role of adjuvants in chronic inflammatory diseases.

What Squalene Does to Humans

Your immune system recognizes squalene as an oil molecule native to your body. It is found throughout your nervous system and brain. In fact, you can consume squalene in olive oil and not only will your immune system recognize it, you will also reap the benefits of its antioxidant properties.

The difference between “good” and “bad” squalene is the route by which it enters your body. Injection is an abnormal route of entry which incites your immune system to attack all the squalene in your body, not just the vaccine adjuvant.

Your immune system will attempt to destroy the molecule wherever it finds it, including in places where it occurs naturally, and where it is vital to the health of your nervous system.[viii]

Gulf War veterans with Gulf War Syndrome (GWS) received anthrax vaccines which contained squalene.[ix] MF59 (the Novartis squalene adjuvant) was an unapproved ingredient in experimental anthrax vaccines and has since been linked to the devastating autoimmune diseases suffered by countless Gulf War vets.[x]

The Department of Defense made every attempt to deny that squalene was indeed an added contaminant in the anthrax vaccine administered to Persian Gulf war military personnel – deployed and non-deployed – as well as participants in the more recent Anthrax Vaccine Immunization Program (AVIP).

However, the FDA discovered the presence of squalene in certain lots of AVIP product. A test was developed to detect anti-squalene antibodies in GWS patients, and a clear link was established between the contaminated product and all the GWS sufferers who had been injected with the vaccine containing squalene.

A study conducted at Tulane Medical School and published in the February 2000 issue of Experimental Molecular Pathology included these stunning statistics:

“ … the substantial majority (95%) of overtly ill deployed GWS patients had antibodies to squalene. All (100%) GWS patients immunized for service in Desert Shield/Desert Storm who did not deploy, but had the same signs and symptoms as those who did deploy, had antibodies to squalene.

In contrast, none (0%) of the deployed Persian Gulf veterans not showing signs and symptoms of GWS have antibodies to squalene. Neither patients with idiopathic autoimmune disease nor healthy controls had detectable serum antibodies to squalene. The majority of symptomatic GWS patients had serum antibodies to squalene.”[xi]

According to Dr. Viera Scheibner, Ph.D., a former principle research scientist for the government of Australia:

“… this adjuvant [squalene] contributed to the cascade of reactions called “Gulf War Syndrome,” documented in the soldiers involved in the Gulf War.

The symptoms they developed included arthritis, fibromyalgia, lymphadenopathy, rashes, photosensitive rashes, malar rashes, chronic fatigue, chronic headaches, abnormal body hair loss, non-healing skin lesions, aphthous ulcers, dizziness, weakness, memory loss, seizures, mood changes, neuropsychiatric problems, anti-thyroid effects, anaemia, elevated ESR (erythrocyte sedimentation rate), systemic lupus erythematosus, multiple sclerosis, ALS (amyotrophic lateral sclerosis), Raynaud’s phenomenon, Sjorgren’s syndrome, chronic diarrhoea, night sweats and low-grade fevers.”[xii]

Hiya

Just spent a week in the city getting to see my super doc, Dr. Yacyshyn, and planning the next phase of attack. So unless I'm one of the unlucky ones who doesn't posses the enzyme to metabolize imuran, that will be my new companion for a long time to come. I'm interested in trying out a drug free remission, but we'll take that in baby steps as we do everything else with this goofy disease. Dr. Y isn't into it (the drug free thing) but I'll try and convince her again once things are stabilized and all looks good. Are you reading this Dr. Y?

Also went and saw my ENT and got tubes put in again so my hearing is not perfect but man has it increased exponentially. I have to say that he (my ENT) has totally redeemed himself after the initial experience. He is kind, and gives me the time to explain myself, and is almost a different person (I know he must have been frustrated seeing me every few days after he put in the tubes the first time when things kept deteriorating and nobody had an answer - but it was a yuckier time for me when nobody took me seriously and I was in the worst shape in my life). He is very good now though, we've had a couple of good discussions in the last few visits. I also have to say that Tyra, his assistant is the best medical assistant I have seen in my newly very active doctor visiting life. She is not only nice and kind but also very compassionate and professional and totally on the ball. If everyone in the medical field was like her, people would have a completely different view of going to see the doctor.

Brian's got a week off and the forecast is for rain rain rain... but he managed to sneak off today and get a good ride in - it's broken cloud right now so he's going for a long one before he goes to the GranFondo in Penticton next month. While there I get to see the hairdresser that makes miracles happen out of bad hair, and now I have the worst hair ever - in the history of time, so hopefully he can pull off a miracle. Hopefully he's still working.

Last but not least, the survey results might actually get used for something useful instead of just settling my own curiosity. Dr. C Pagnoux and Dr. E Yacyshyn are putting the results together and will try and get them published in a medical/rheumatology journal. COOL! wait... SUPER COOL!!!

Just thinking about old friends and new ones

Just found out that there are more people than my immediate family reading this blog lately, so I wanted to send out props to all my old friends and all my new friends. Anna, Mike, hope you're doing well, haven't heard from you in a while, Cole and Georgia, hiya, welcome to the vortex - ha ha. Geoff, thanks for the email, I'll respond when I get back on my actual computer - I'm glad things are going well, and I'll be thinking about you when you're getting infused full of the good stuff. I loved the power point - awesome way of looking at life, and all the snowy pictures got me all excited. I loooove the snow. Brian's ruined me for life with the snow thing - ha ha. I love sun too, but now in my new 'beached whale' body, I'm more into the winter games.

I hope you're all doing well and things are moving in the right direction for all of you. Someone just told me something today that kinda stuck. "If things are bad remember that they can always get worse." So no matter how bad things are dance in your head, tap your toes, and smile knowing that you're alive and have an opportunity to beat this thing and get back some semblance of normalcy - I will anyway.

In the jaws of life



Inside the largest dinosaur in Canada
(it's always good to be safe and wear a helmet :))

 Hi friends and family. Sorry for the time away. I went with Hana and mom and dad to Dinosaur land for a few days away from the everyday stuff. It was rainy the ENTIRE time we were there, but it still was fun. Saw the Tyrell Museum of Paleontology and Hana totally dug all the dino stuff everywhere in the town. We even found a dino bone - I think it's a femoral head of a smaller creature (it looks just a bit bigger than a human femoral head - this is Physical Anthropology Marta speaking). We got to go up in the biggest dinosaur in Canada and look out of it's mouth at the surrounding geology. Pretty cool place.

I also had a cold that I've been dealing with since the beginning of the month, but just before we took off to Drumheller it went into my chest and aside from a little anxiety on my part it seems to have gone by without any collateral damage. I did go to the doc however and got some antibiotics to ensure it doesn't turn into a lung infection.... can't handle one of those right now. The funny thing is that the antibiotic I got has an interaction warning for people on prednisone - the combo can make your tendons and ligaments rupture. Sweeet! So I've been taking it real easy to ensure no ruptures. I did have my eardrum rupture while we were away though, and that was kinda cool. Not really. But the good thing is my doc looked at the ear that ruptured and said it looks better behind my eardrum now than it has in months and months. I can barely hear out of that ear, but she figures it's because the eardrum is healing and is a little stiff so not functioning the way it's supposed to. This too shall pass. I'm excited that summer is coming - or so the calendar says - Brian said it was snowing today all the way down to the lower chalet. Crazy weather. I'm spending some time in my garden and went for my first bike ride since the flare - that felt good... real good... just to be out there and using my own strength to propel fast enough to feel a little wind in my face. Oh the little things that you forget to appreciate when things are going well. I will strive to continue to do that every day - appreciate the little things.

Live long and prosper my friends.

A crazy week of appreciation

It's a year ago today that I was getting my lungs cut open by Dr. Bedard and his team who came in on their day off to figure out what's going down in my body. It's a year ago today I got my diagnosis. What a journey of growth (on many levels - ha ha) it has been this past year. Brian and I went out the other night (on the 6th - a year to the day of getting into emerg and being told I have a very nasty cancer in my lungs) to celebrate another year of life and getting to spend it with the people you love.

What have I learned in the last year?

Family is the MOST important thing in the world. The people you love and chose to spend the rest of your life with in front of all your friends. The people that have come to this world out of that love. The people who bore you out of their love. The people who you grew up with and fought with as a kid and discovered the world with as a sibling. The people who have accepted you into their lives because of the love you have for their son/brother. I love my family more than any words could ever express. Thank you so much for being my rock - all of you.

Friends are invaluable. People who you work with every day that take time out of their busy lives to show you love, support and give you courage. People you play with, and drink with and eat with and wouldn't think they would have the time to think about you, and they end up surprising you and filling your heart with joy and love.

Don't judge. You never know what the person you're choked with for taking their time crossing the road is going through at this moment. You don't know why that big person riding one of those little automated chairs is that big and in that chair. You don't know that the girl with the snarly face at the checkout is that way because the doctors have put her on some crazy meds. You just don't know. We all have our own crosses to bear and our own demons to fight. I have learned this last year to give people a break and be gentle with them (except when I'm having a pred rage moment - then I can't help myself, I try, but not always successful). What's on the outside is not always congruent with what's on the inside.

Take every moment of feeling good and being happy and cherish it because you never know what tomorrow holds. Treat it as the miracle it truly is. Live every moment like the next might be taken away (cuz it can be) with dignity, grace, loyalty, love and joy (I am not saying I've got this one nailed, but I try).

Don't stress out about tomorrow because I really have no clue what tomorrow holds. It's as much as a mystery as what lies on the other side of the universe, so I have stopped worrying about what can happen and if it will. There are billions of things that can happen tomorrow or next year, but I know what's happening NOW, so I will react accordingly.

Question authority. Not always but don't just take authority's word because they're in a position of authority. Those positions are held by people like you and me who have good days and bad days, who skipped some classes in school and don't know everything about everything. Inform yourself as much as you can and be an active participant in the big decisions that guide your life in a certain direction. Authority, for the most part, appreciate that.

There, I've  pontificated enough. Now to going out and enjoying my beautiful family. Happy Mother's day mommas. A big fat hug and kiss to my momma, thanks for being there for me during the super crazy times a year ago, there are some memories that are fuzzy, but one thing that is crystal clear is looking up between being in and out and always seeing your face looking down on me - full of love and compassion. I love you mommy.

Time's fun when you're having flies

Well it's almost a year from the real crazy times. It was a year ago today that I was in the Emergency Department of Hinton Hospital. Tomorrow would have been the drive to Edmonton to see the ENT for the last time before diagnosis, and three days from now was the night that I was told I have terminal-ish cancer of the lungs. Then things started to get better. These days were the real shitty ones.

Now - today - I feel good... real good (well ). Had the RTX just under a month ago, and what a difference. I just bought a treadmill and it came in last week. I've been walking on it to try and get some of the conditioning that I've lost over the last year. I look like a fertility doll - which I have never found pretty.

I've cut my hair short - up to the new growth - and all of my new hair is curly.... hmmmm, all of that money I spent as a teenager on perms, just popping some little pills for 10 months coulda accomplished the same effect. Ha!

The ski season is over, and it's time for new beginnings. Time to get the old Marta back on track. Time to publish a book. Time to plan a big event for next spring's Rare Disease Day (stay tuned).... also there might be some history making news from our Weggie Survey, who knows what tomorrow brings, I do know that today is a beautiful day with my beautiful people.