Tuesday, November 2, 2010

Somedays are better than others!

Once told you know...you know! So what to do next? 
Welll... try to become The Seventh Samurai !
 With that kind of  strong determination,  to keep getting up in the morning/midday LOL! and enjoying life regardless of the odds!
I go in Nov12th  for my next update on my latest x-ray. ...so we  shall see what shows...

Cheers

Tuesday, September 28, 2010

No Bucket List

Just thinking...about a  pilot  ( some time back) I met  in the jet way one day .... that did not know me well....but still  laughed in my face  ( before even introducing himself) in front of not only myself...  but also in front of our out bound crew.. the pilot actualy said... " so... did your boyfriend kick you out and send you back...and if he did would you ever admit it that you made a misake to move to New Zealand?" all the time laughing in my face ...all this in the jet way in front of our crew..... So what to do... how to answer... how to answer...I did the only thing I could do... I reach  into my pocket ...prayed for a dollar billl....some coins, change something to equal $1, ahhhha! got it! I said " Well here is a dollar , and placed it in his hand.... and said  now why don't you go buy yourself some of your own business and leave my alone... and I actually give him a dollar bill" ..because I felt he was just a little to bit nosey in my business and was trying to find something wrong with the way I was enjoying my life at that given moment...while I was actually having the time of my life..... My finally word... Is  to enjoy and live the life you have always dreamed...if you do it right , there is no bucket list at the end....don't you agree?

Friday, September 24, 2010

To Yanni Mai ...my dear friend..song"Flowers for a Ghost [The Tudors/Elizabeth]"

To you Yaani-Mai my dear old roomie after all these years...you are still here beside me, and with me at my side in the darkest time of my life...you dropped everything... and you and Gene dropped things and came from Dallas by plane, car and ferry to Vancouver Island BC Canada just because you are you...and Gene asked you..." after all this time what do you  two have in common?...that question can not be answered because only we understand...and only we really get it LOL!!! how I love you my best friend....because you get me....and have always understood me like I understand you and your many wonderful and crazy layers, and how I love your soul. You my dearest friend understands the many crazy layers of my being...you also took me to my first foreign movie "Babette's Feast"...you understood my love of other cultures and food... and as roomies between the two of us...we could not even boil water in the 70's LOL!...to you dear friend... and thank you Gene...
BELOW
This song and this period in time ....was my favorite in research, history and art ...my passion...it encompasses so much for me.

Chasing Windmills

...it's been a pretty tough week. So far I have only returned a few phone calls. I have such great support from my SWA family. Thank you , thank you thank you all.
Thank you Yaani-Mai and Gene for the coming to see me all the way from Dallas. Your visit was the best medicine. Just sorry you guys  missed the bear in our compost only two hours after you left!
Thank you LouAnn Alexander you are my hero.
Thank you Pam Walters for your warmth, support and kindness.
Thank you Cynthia Nielson for always being there and believing in me.
Thank you Linda Lipschultz for being my beautiful support system for all these years.
Thank you Mary Schwarze for being my army and all your words of wisdom.
Thank you Janet Reed, Patty Seward for your dear and forever  friendship.
Thank you AnnMarie Moto for your thoughts and beautiful smile.
Thank you Fields Williams for all the warm memories.
Thank you Patrice Watson for being there since the 9th grade and you're still here.
Yes, Beth Silver...that was my piano LOL!...what a funny memory.
Thank you Jenell Noland...for the beautiful letter you sent me on September 13th... I have printed it  below.

"I know you really don't know me, but I just wanted to let you know how you changed my attitude about being a flight attendant.The first time I saw you, you made me believe that there was still glamour in my job.
I patterned my professionalism based on you. You still carried glamour with you to work, despite the company effort to slum it down. You are a beautiful woman, and I only hope that one day, I can possibly hold myself with as much beauty and grace as you.I wish you well always"


Thank you James and Connie for your love your weekly letters and cards filled with love.
And thank you Mom and Fred Jr. and Tracee my family for your almost daily calls filled with love, hope, blessings and everything in-between....and you still keep giving.

THE UPDATE

And now for the update...not good news. The clinical trial with the new chemo drug Iressa 'getfitanib' did not work. It was to target only the tumor and shrink it...it was not to cure , but to shrink thus hopefully given me perhaps 3.2 additional months....2 months into the pills and  it is not shrinking...I was told on Friday to stop taking the drug/Chemo as it is not working...and I am only dealing with the ugly side effects...instead...the tumor  has grown considerable since  my surgery in June,,,,and it is still growing.... a new growth  about the size of a quail egg that you can feel on my right side popped up... which we thought and had hoped it was a mass of scar tissue from the surgery...well...it's cancer too. Regarding the cancer nodules on the lining of my lungs which the surgeon did not remove because there where too many, and the doctor said if he attempted to remove any of them , they would just re-seed themselves...well three of them have increased in size and are now over 1centimeter in size. It's all in-operable....so there's the update....ooooh wellll.
Regarding any chemo...chemo is not really advised as chemo is would only be palliative...meaning  taking away quality of life vs quantity of  life perhaps only adding a month longer...but painful...no way ok!  The fluid in my lungs is increasing so it is getting a little harder to breath...I will  go in next month for x-rays to check the amount of fluid and  see if  they need to drain me again....right under the right bobbie. I have already had one drainage so at least I know the procedure.
 If the headaches get worse then it's another CT scan for  brain metastasis...really looking forward to that. Sven and I have an appointment with  radiologist next month...but because of my Lupus , radiation should only be used as the finally option for the brain. But talking is a good thing right?

...so if I'm off the radar for a while ...or it seems I'm not returning calls, messages... I swear I am still alive and kicking....yeah... I'm a good kicker!....I know you're there...sometimes it's just a little hard to talk....but I do read your mail and I feel the love and warmth of my family and friends....I'm just going to take some time with my hubby....listen to the music....and suck in a lot of good air....the air is realllly good here.
Here's to updating next month...and if you would like for me know that you were here on my blog... just sign up as a "follower" and I know you checked in...and you will get any updates that I am ableto post here... I will post here before I post on facebook.
See you in October

Wednesday, September 1, 2010

To Be Loved

( The Mourning Clock by ParkeHarrison)
This last week has been filled with many ups and down with dear friends calling and emailing their prayers and good wishes to stay strong...and I thank you all dearly for your support. But sometimes the nights are hard, like the other night as Sven held me as a quietly wept. Not saying a word just his strong arms hold me...  the next moring there was a letter he had typed in the early morning hours laying on my keyboard.
It was such a beautiful letter that touched my heart...I know what is to be loved by such an incredible man. I wanted to share it here.

The Letter

If I had words that truly can say how much I love you I would be happy.
If I could find a way to tell you just how much this all hurts, my tears would flow like rivers.
But as I am I am bound by me being me that has formed over my live time it is hard to change but I try.
If I only could do something to change this verdict you where handed I would give half of what it would take of my live to prolong yours so we could be together till the end
I still can not see a path alone and I think of all the things you do to make our lives better and lovable
But what I feel most cheated off is the fact that I will never really get to know you and never will discover all the knowledge you have.
Never to see all the things that you carried together, why and how.
It will always be a brush, a touch, a faint kiss that encompassed out lives together and I very much dislike that thought being cheated of sailing into the sunset together.
Sharing the dream we both had.
Love
Sven

Wednesday, August 4, 2010

follow the light in your heart....

painting by  Andrew Wyeth
It is during our darkest moments that we must focus to see the light
Aristotle Onassis

Sunday, July 25, 2010

An Existentialist Pickle

"Whenever I get myself into an existentialist pickle, I ask myself, what would Kafka do? Got it! Turn into a cockroach!"
Joe McFadden
(Kafka Kandinsky but Immanuel Kant 60 x 48 oil)

...A few appointments later with a few more tears, one step back then 1/2 step still in the air and here we are. I was without words to update my blog, so many emotions, no real ups, numbness ( is that a word?), should I stay or should I go and be a guinea pig vs quality of life?

...well... I decided to be a guinea pig and have quality of life. We got the news from the Oncologist that I was approved for the new ( 2003) oral drug (it's a type of Chemo but you take one pill a day) called Iressa. They took a sample of my tumor to test for a genetic maker mutation called EGFR. It appears that Iressa only seems to work for lung cancer patients with this mutation. It is suppose to shrink the tumor thus slow down the cancer. It will not cure, nor will the cancer go into remission, but it has been show to help give 7.6 months with a 32% of 1 year, and with less side affects than traditional Chemo, and better quality of life.
I am on day 4, and just a two side effects...ahhh life is good again. Humor lives on! Cheers


Wednesday, June 16, 2010

Time

Tomorrow (Thursday) is the big day. We have 4 doctor appointments. The Onocologist, Radiation Tech. Eye doctor, and  then on to my GP to put it all together. All to give us the complete picture with this aggressive creature.

What Elephant?


Thank you everyone for all the blessings, prayers and support. My neighbors are awesome...although there is always the elephant in the room for them...I am aware that it is there for them, but for me their warmth and comfort says it all. I have to tell them it's ok...what elephant? and we all laugh:)

Houston we have a problem

Illustration by Ana Juan vist her at http://www.anajuan.net/

One June 7th 2010, I went in for a VAT ( Video-Assisted Thoracoscopic ) surgery. ( I placed a video from youtube at the bottom that explains this type of surgery...it's about 1:30minutes) With VAT an assisted camera is inserted , then 4 cuts are made to remove the tumor. Well , what the camera found once inside was more than they bargained for. As it turned out much more cancer with nobes had spread over the entire lining of my lungs. Making this the secondary site. So they aborted the surgery and left the tumor in and closed me back up, with a drainage bag. The findings being not stage 1, but Stage IV non-operable lung cancer with a Malignant Pleural Effusion. Sadly there is no stage V, the average life expectancy for lung cancer with a malignant pleural effusion (which is what I have) is less than 6 months. The median survival time (the time at which 50% of people have died and 50% are still living) is 4 months. Hubbie and I are not going down with out a fight, we know that time is of the essence. So we are looking into Cancer Clinics , the one that looks promising now is OHI it has it's office in San Diego, but the hospital is in Mexico. "The Oasis of Hope Hospital in Tijuana, Mexico is across the border not far from San Diego airport. It is the only clinic allowed to use the Issels Treatment and it uses the Laetrile treatment. Sven and I have already talked to a consultant to see the next step. So we are not giving up hope. Regarding Chemotherapy and radiation. Chemo would only palliate as I have non-small cell lung cancer so chemo will not help, .and because of my Lupus radiation is not an option.
Although Sven and I are going to go to the mattress!
WHAT IS VAT SURGERY - My surgery was it Royal Jubilee Hospital in Victoria BC


(illustration by Ana Juan)

Tuesday, June 15, 2010

Thank you to all my friends I feel the love


Thank you...I know I am loved.... warm brownies and big hugs all around...group hug ...yummy



Tuesday, June 1, 2010

Dracula & Merlena Dietrich


All went well yesterday. I had the Bronchoscopy (an instrument down the mouth and passed down into the air passages of the lungs looking for tumor growth and and taking a sample tissue) and then followed by a Mediastinoscopy where a 1 1/2 incision is made at the bottom of the neck, sends an instrument down behind the breastbone and between the lungs and takes samples of tissue and the lump nodes) . This is done for Cancer staging. Staging of Cancer is staged at 1-4. So we will know by Wednesday the stage. For now we are hoping for the best and are still having a lower right lobe lobectomy next Monday.(A lobectomy is the removal of one lobe of the lung.) ( Did you know you have 3 lobes in the right lobe and only 2 lobes in left...the heart takes up the space in the left so only two lobes there...who knew!) Sven took me home around 4pm. Felt like I have been bitten by a very frustrated Dracula. Then someone tried to save me with a with a bullet to the chest...only, FIRST! Drukuuula could not find a good vein in my neck. Hehehe, my veins are soo small and they roll....who knew they also rolled in my neck! Take that! Drac!

So Druc went for my throat!. The pain from the chest that feels like a bullet hit ( although I have never been hit by a bullet). But no worries alahs it was not a silver bullet so I will be fine.
Sven has been awesome, my rock. Much better today hurts to talk, I sound a little like Marlena Dietrich ( I said a little ).

Marelene Dietrich singing "Where have all the flowers gone"

Please stop the mini player to hear the song.
Beautiful in any language

Thursday, May 20, 2010

Monday, May 17, 2010

Roller Coaster



I just went for a visit to  "Oh Hello Friend...you are loved" blog...I do not know why I chose her blog to visit first...but I know that was the place I was suppose be. I am sadden to hear the news about her Mom affectionately called"Anna Banana" ( because she wears a little bit of yellow every day). And I too along with many of our blog family send out warmth and hope that it has not spread.
Three years ago my husband and I moved to Vancouver Island to be closer to his parents on Cortes Island. Sven (my hubby) already had his Canadian Citizenship, but I still needed to go through the immigration process. Part of the process is to have a medical checkup involving x-rays. About 2 weeks later I received a call to go to the TB clinic. First, I was healthy as a horse...while as healthy as a horse with Lupus ( that was under control).. and I had turned into a 5'5 cherub not having exercised off those honeymoon pounds  even though we had been married for two years. The second for both of us, happily bliss for finding each other getting ready to flip over to our 50's.
Needless to say, I did not have any symptom's nor did I remotely look like someone with TB. I was a little nervous, but knew I could not have TB. The doctor after 3 months of  test and x-rays cleared me... but said that he would like to keep an eye on the  small spot they located on my right lung ( I thought it was most likely from a serious car accident  I had in my 20's ...fast forwarded 1 year later, Sven noticed that I was coughing at night in my sleep, this turned into a dry constant irritating  dry cough that I thought I should talk  to the doctor...more x-rays followed...followed by a bronchoscopy  followed by a biopsy.
Two weeks ago the results came in, and it turned out to be lung cancer. I have never ,ever been a smoker, nor allowed it in any of my homes. Cannot even be around people who smoke. Come to find out only 10% of  lung cancer patients are from non-smokers.
I have always been healthy, and except for my Lupus (SLE) which I have always been able to control  by taking the fewest meds and a healthy lifestyle, who would have thunk!
The past 3 weeks have been a roller coaster. Last week I met with the Oncologist, and then my surgeon that will do the surgery. Presently it looks like my procedure will be the VATS minimal access right lower lobectomy... but that may change depending on what the mediastinoscopy shows, which I am scheduled for next week. The mediastnoscopy is a procedure in which a lighted instrument is inserted through the front of the neck down through the mid-part of the chest and tissue samples are taken from the lymph nodes near the bronchial tubes. They will test these for cancer and this will determine if the cancer has spread to other parts of the the body. At also stages the cancer , which will be from 1-4.
I go in for my Pulmonary function test tomorrow,  this checks for the breathing ability of the the lungs.... followed on Wednesday with my pre-op exam.
Meanwhile I am reading all that I can on lung cancer, diet, and exercise. Sometimes it is hard to stay focused on any one thing and I feel at the end of the day I have not accomplished much of anything. Oh well...I feel as anything that keeps me busy is a good thing.
My hubbie his mom, dad and sister, not to mention our neighbors have been awesome with their support.
Meanwhile I am finding some great recipes, that already seem to be helping. I will list it on my next post.
I am working on a mostly raw diet now. I the morning I start with a Beet juice detox and energy drink. NO! I still can not STAND the taste, and I drink it as fast as I can. But ,I know it is so good for me, and hubbie even chugs it down with me in the morning. He hates it too, but like me we know we will get use to it, although we have been taking it for a week and still have not fallen in love it. But it is a beautiful color. LOL!

BEETS, CARROTS, PARSNIPS & GINGER DE-TOX AND ENGERY DRINK
You will need a juicer
3-4 beets
1 thumbs lenngth of ginger
3 parnsips
4 carrots

Cut up all , then juice
...drink one glass every morning
Cheers!
Desiree

Wednesday, April 28, 2010

Life is a beautiful package


Oh well...got some bad health news ...but it only makes me want to live life to the fullest. I am now in the process  to revamp my skin care line. And thanks to " A Gift Wrapped Life " ( thank you, thank you) for your beautiful blog, your insights, gift wrapping and all you are.... you have inspired me and giving me a purpose ...I am now in the process to give each of my creations a unique package. My products will be the same, but I want each creation to have a one of kind package. Ohhhh Life is beautiful. Here's to the next many, many years to come!


Sonnet LXXXI

And now you're mine. Rest with your dream in my dream.
Love and pain and work should all sleep, now.
The night turns on its invisible wheels,
and you are pure beside me as a sleeping amber.
No one else, Love, will sleep in my dreams. You will go,
we will go together, over the waters of time.
No one else will travel through the shadows with me,
only you, evergreen, ever sun, ever moon.
Your hands have already opened their delicate fists
and let their soft drifting signs drop away; your eyes closed like two gray
wings, and I move
after, following the folding water you carry, that carries
me away. The night, the world, the wind spin out their destiny.
Without you, I am your dream, only that, and that is all.
Pablo Neruda

Monday, April 26, 2010

It is now Forbidden
by Pablo Neruda

It is now forbidden
to cry without learning;
to wake up one day
and no longer have dreams;
to become afraid
of your own memories…

It is now forbidden
to not smile
in the face of adversity;
to stop fighting
for those who you love;
to abandon it all
because of your fears;
or to give up in making
your own dreams come true.

It is now forbidden
to pretend we don’t need
understanding each other;
to place less value
in the lives of others;
to ignore each of us
has a unique path to joy...
It is now forbidden
to give up on happiness,
to abandon optimism,
to quit improving ourselves;
to believe the world
will be a better place without you.
 Pablo Neruda 1956

Thursday, April 22, 2010


Saddest poem by Pablo Neruda

I can write the saddest poem of all tonight.
Write, for instance: "The night is full of stars
and the stars, blue, shiver in the distance."
The night wind whirls in the sky and sings.
I can write the saddest poem of all tonight.
I loved her, and sometimes she loved me too.
On nights like this, I held her in my arms.
I kissed her so many times under the infinite sky.
She loved me, sometimes I loved her.
How could I not have loved her large, still eyes?
I can write the saddest poem of all tonight.
To think I don't have her. To feel that I've lost her.
To hear the immense night, more immense without her.
And the poem falls to the soul as dew to grass.
What does it matter that my love couldn't keep her.
The night is full of stars and she is not with me.
That's all. Far away, someone sings. Far away.
My soul is lost without her.
As if to bring her near, my eyes search for her.
My heart searches for her and she is not with me.
The same night that whitens the same trees.
We, we who were, we are the same no longer.
I no longer love her, true, but how much I loved her.
My voice searched the wind to touch her ear.
Someone else's. She will be someone else's. As she once
belonged to my kisses.
Her voice, her light body. Her infinite eyes.
I no longer love her, true, but perhaps I love her.
Love is so short and oblivion so long.
Because on nights like this I held her in my arms,
my soul is lost without her.
Although this may be the last pain she causes me,
and this may be the last poem I write for her.
Pablo Neruda
I don't love you as if you were the salt-rose, topaz
or arrow of carnations that propagate fire:
I love you as certain dark things are loved,
secretly, between the shadow and the soul.
I love you as the plant that doesn't bloom and carries
hidden within itself the light of those flowers,
and thanks to your love, darkly in my body
lives the dense fragrance that rises from the earth.
I love you without knowing how, or when, or from where,
I love you simply, without problems or pride:
I love you in this way because I don't know any other way of loving
but this, in which there is no I or you,
so intimate that your hand upon my chest is my hand,
so intimate that when I fall asleep it is your eyes that close.
Pablo Neruda
Sonnet XVII (100 Love Sonnets, 1960)


All the world's a stage

"Life is a great big canvas, and you should throw all the paint on it you can." Danny Kaye
“Excellence is not a singular act, but a habit. You are what you repeatedly do.” William James 
The only people for me are the mad ones, the ones who are mad to live, mad to talk, mad to be saved, desirous of everything at the same time, the ones who never yawn or say a commonplace thing, but burn, burn, burn, like fabulous yellow roman candles exploding like spiders across the stars and in the middle you see the blue centerlight pop and everybody goes "Awww!” Jack Kerouac

Saturday, June 13, 2009

Seven years in the making...



I have ventured into the next chapter in my life with my new bath and body skin care line. My concept is to create beautiful, elegant and nourishing-rich crémes, cleansing bars, bath oils and other skin care treatments with delightful and unexpected fragrances to help encourage a sense of tranquility and harmony for both the mind and body with pampered luxury
Thank you for all the support. My on-line shop is now up and running.Please visit my Bath & Body Boutique "Desiree Grosse Bath & Body Canada at
Desiree Grosse Bath & Body