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Between the Doctor Appts. !

  • Lead the colors
    Follow my life between all my appointments, good days, bad days and the days between. Meet my family, grand kids, friends, and supporters. You are going to get to know what makes me click on and off...

    Which one of these wonderful volunteers am I? Can you pick me out?

March 08, 2009

Painting without Color...

The title speaks for it self; my blogs have been near invisible if not missing in action. 

No the notes or words were not lost from the duties of a busy life schedule, or demand of family or even social calls. 

No one may mark these last months in any other color of light except the shades of amber seen in the night skies while sitting wrapped in a quilt of colors not seen, on a weather worn white washed porch, rocking slowly and thoughtless not noticing the breeze of the night air or the call of the evening fowl, knowing the morning is to bring another day of the same, just waiting in time without color... 

These last months have been my personal days of battling my disease in the seclusion of my own soul, mind spirit and living and breathing from where only the real battle worn Cancer patients find themselves.  Numb to the outside world, waking in the shadow of other peoples lives, hearing the sounds of a world rapidly changing around me, which surrounds my waking and sleeping minutes; however so far away I actually never can reach out to touch or at times produce the energy to penetrate the dense thick wall my disease has silently built over time around the core of my life.  

It was not always this way, nor every day however these last months the curtains have only been open a fourth of the way, casting only shapes to the reality of my world as it was.

I rather have the drapes closed so I can fight in the dark, I seem to have a clearer picture with my faith of God leading my fight with his supporting medical team of humans. I always laugh as my team of doctors always state:  Medicine is an art not a science. So I ask? WHERE IS THE COLOR?

Numerous changes created my life canvas to be restructured, re-primed, and now re-framed ready to cast another portrait of where my cancer life journey may take me. I have packed my paint brushes, and cleaned my old ink wells...how I hope faith carries my brushes to the lush green's of the land of Ireland, or the blues cast in the sky seen standing on a mountain top; or the marvel of silver and gold glistening from the glow of the sun as it hits the sand washed from an ocean foam, however I would also welcome the colors of browns, tans and wheat shades which come when life is at it's driest as if it was painted like an untouched desert.

The cancer in one's life, even with the miracle of modern medicine may contribute to many of the color changes, which may lead a patient physical and mental spirit to slow to a crawl and roll more oval than round.

But always including a brush with the color of faith when repainting your portrait of life while living with cancer may be surprisingly beautiful.

Clear the chemicals, clear the mind.  Clear the mind, lift the spirit.  Lift the spirit find your heart, find your heart you may find your faith.  

Searching thru the disease of cancer.

December 06, 2008

EARLY CHRISTMAS GIFT

TODAY I RECEIVED A PERSONAL GIFT! 

WHILE  reading through the daily messages which 144 faithful members of the Yahoo Medullary Thyroid Cancer group post, I found a real surprise.  My gift was not under a tree, or handed to me at a office party by the annual Santa dress alike, or even the UPS driver who works into the wee-morning hours delivering his last on-line package. This gift did not even have my name on it. 

But there it was among the very sad news of the latest passing of a 8 year Medullary Cancer warrior wife's post of her husband's death. It is just normal news if you are a member of a terminal cancer support group but one never gets used to these post, in fact thoughts of your own mortality rate flashes before your eyes and you start counting your own CEA levels.  But today those personal thoughts were delayed as I began to open my gift: 

For me and for every other MEN2 Medullary Cancer patient who have, has or will be diagnosed in the near future with this rare killing cancer this gift is a reason for tears, a note for celebration, thoughts which come filled with hopeful expectations taking over some of the most hopeless case studies ever written in the documents of this disease. 

Today the American Cancer Society placed a light to one single candle among all those which have been lit for those lost, fighting or may have been caregivers of this disease for their spouse or parent. This light now shines bright among all the luminaries that have been bought and placed on every Relay track in every state for years regarding the fight against cancer. As a volunteer always raising awareness, advocating and educating while working to raise the much needed funds to fight cancer, this gift has given me new HOPE for the work completed and which still requires to be done.

Todays message is a story of life ending and maybe life being saved on todays message board.  ACS has granted $80,000 to be awarded for the study of my own personal cancer disease. Is this not a miracle?  In my eyes yes it is, I sit now and remember my very first Relay as the chairman, working so hard to raise over 80K toward the fight against Cancer and now ACS has given that exact amount back in another packaged gift so we may find a cure and answers so others may not have to written off on a message board.

I'm HONORED and HUMBLED to be an ACS volunteer and now know that my gift of time, energy and funds DOES save others!

My surprised gift has been opened and now I await to be part of the amazing journey to which others may now have more answers and less need to worry about how long life is available to live....but to go out and REALLY LIVE LIFE.

October 15, 2008

Medicine or Mortgage

As a cancer warrior, one who requires 32 pills a day multiply 2 times a day (yes that is 64 total) I worry daily about the rising cost of prescriptions or the upcoming moral issue of prescribing them or not to a patient!

Jeanne Sather of Seattle, who is fighting metastasis breast cancer, orders her cancer drug, Tykerb, though the mail. Every time the small package arrives with her three-month supply of pills, she says, "I look at that little box, and it's just hard to believe that I'm holding $10,000 worth of medicine. (AARP, Oct 2008).

This issue of health care hits home even closer for myself. My cousin Maureen, now retired after working as a top educator for over 26 years within the California Public School System was in the middle of planning out her retirement, browsing through the beautiful full color tour magazines, marking her five-star dream vacations with her special yellow paper clips, writing her notes, arranging her savings to meet the payment deadlines for each of these marvelous and very deserved adventures would take place. This was her second chance on life, the new Maureen disrobing from the Catholic uniform and replacing the black patent leather pumps with her favorite walking shoes. She had often day dreamed while correcting endless piles of student work papers of all her future trips abroad, life was good.

However, as the ocean tide changes so does the tides of life. Maureen was diagnosed suddenly with a disease that now has taken her future plans and placed them on the stove turned down to low so it does not even muster a head of steam while her emerging disease has to be placed on the front burner and demands to be placed on high for a sure red-hot boil.

Now not only saddled with the worries of staying a live, but to master a balanced health, social, physical and mental format to obtain some assembly of a healthy quality of life, Maureen now is fighting to locate the funds required for a prescription (Herceptin) that is going to cost her $1000 per pill x 2 per day. A total of $60,000 per month from her small Social Security Insurance and meek retirement check together. Yesterday they were covering her house hold needs with a few extra dollars for a few vacations.

Where does someone come up with tens-of-thousands for medicine to fight diseases when they can barely place food on the table or pay their mortgage each month? As an

American Cancer Society

volunteer working with hundreds of cancer patients I often hear “I’ve been borrowing against my home to make ends meet, and that can’t go on forever. I’m so afraid these drugs are going to make me homeless.”

The question and debate is now arising in the medical clinics, hospital hallways, gym locker rooms, and the surgery scrub room between doctors, nurses and administrators. No where close to the ears of the patients which it effects the most. The new “specialty” drugs have become the fight, fright and fuss of the medical world. About 25% of all money in this country goes to these drugs - $73 billion this year, a figure expected to increase to $99 billion by 2010. In two years, half of all drugs approved by the F.D.A. will be specialty drugs, says Stephen W. Schondelmeyer, professor of pharmaceutical economics at the University of Minnesota and director of the university’s PRIME Institute. (AARP, Oct 2008).

The largest factor in producing any drug is what the market will bear. The industry approach is simple they price the drug as high as possible and see if the world is willing to go along with it. It does not take a brain surgeon to understand that one. We see it with our economy every day…check out your gas tank!

The drug industry position is that the prices reflect the high cost of research and development. One biotech company official told the Los Angeles Times that it’s the cost of R&D “as well as the price determined by the market.” (AARP,Oct 2008)

Not only are these specialty drugs expensive they are very hard to come by. Not only by the patient but the medical field. It can be a battle and a real issue of access not only because of the insurance bottle-neck policy, but the manufacture processing schedule. Leaving the patient who can actually dream of utilizing these drugs with even a bigger battle locating them.

The medical field is now up against numerous factors surrounding these drugs; high cost, access, and managing patients who in their own right may have been cured or at least had the option of a true managed health care program providing them some resemblance of a quality of life.

I think of my own life fighting and living with cancer. I have no option of a pill, or radiation/chemo to cure my disease. So I had not the choice of a multi-billion dollar drug that just may have changed my cancer outcome. Not that I could have ever afforded such a problem. I often find myself expressing to other patients that God saved me at least the pain, suffering and timeless worrying of facing the medical world, financial crises, mental anguish and physical drain surrounding these specialty drugs.

Think about it if Rheumatoid Arthritis is part of these high-priced drugs (which they are), the prices of the new oncology drugs are shaking the entire health care system. If you are fortunate enough to be able to afford these drugs even with government aid, there most likely will come a time when your insurance is to hit its lifetime capacity. It becomes a nightmare of paperwork and red tap. These specialty drugs cause problems for those that can afford them. The problems are massive…for lower, middle and upper income patients.

This is where your diagnoses be it Cancer, MS, Arthritis or Heart disease can allow you to turn the tide on medical and health issues that plague our country. Take those raw emotions, unleashed anger, feverish frustration, mental and physical anguish that may plague you since the day you were diagnosed and change the system for you and all other patients. Your disease must become the voice of an advocacy program of tomorrow.

Believe me, working with the

American Cancer Society

I found my voice, diligent work and determination can change policy, procedures and make patient choices work for us “the patient”. Do not sit and think of the What if’s or May not’s, as tomorrow is right around the corner.

We must continue to be the advocate of those that cannot use their voices, physical power or mental capabilities for their own fight. Look at you own fight, use that energy your disease is giving you through your anger, frustration, loneliness, or desperation to a group that is working for the entire patient population. Check out

ACS Cancer Action Network

.

October 08, 2008

Making a Change

Tuesday Oct 7th: Did you take time out from your busy schedule and watch the debate between our two candidates who are running for the most important seat one could ever hold in their life time? This one person to which we the American people elect takes total control of our country and becomes our voice in a short few weeks?

I never thought living only a short 47 years that I would be so concerned about so many issues. Looking back in my life I hated learning about government if I remember right I think I carried maybe a high C in that class.  Slept most of the 45 minutes of class time away. But today I must find time to read up, blog it, and sit quietly taking notes on the issues and the words of the men who are speaking about my future, my kids and grand-kids future. It scares me that our planet is dying by the second, the precious gift of life is being snuffed out from Gods creatures big and small, and our society is being wiped out by economic miss handling from a small % of greedy mislead humans. On the other side we have countries killing their fellow neighbors, wiping out total civilizations and we read more about the pro-athlete who may or may not get paid the billions he thinks he is worth and he may or may not play for this team or that team. Our world is being rocked off its axes by disease that are un-named and most of us sit like small parasites on a huge living breathing bleeding body which is slowly decaying while waiting for something or someone to do something to save us from our own past choices.

My question today is:  Are YOU doing something positive to help change the negative in your world? If so tell me what it maybe? Big or small, today or yesterday, or tomorrow it is going to take ALL OF US TO CHANGE. Take one issue YOUR HEART BEATS FOR and dive in to it, work toward making it better for all. WE ALL can make a difference if we work together.

September 17, 2008

The Piano Player

Inspiration for today:  My inspiration today comes from a 7 yr. friend to whom I have never met face to face, hugged or touched his hand in thanks. We met on line by way of my dearest friend and here we are today, sharing.

Cobra Gift: Thank you for sharing the The Piano Player today. The story provided me this thought:

Mary Thought: Often times when I'm troubled, scared or hurt I tend to bottle up, tie it all inside. But if I reach out, share with another the load is magically lifted by the strength of another. Try to share today...she what you may find lifted or who you may lift. Let us know your story.

September 16, 2008

Cross or Gangs?

NEWS TODAY as reported by FOXDFW.com. A Texas teen claims she is forbidden from wearing a rosary around her neck in school because the Catholic prayer beads are a gang symbol. MyFOXDFW.com reported.

OK, enough is enough. As one of the majority people in a semi-normal society, driven with morals, ethics, and some kind of simple religious ideology I assume there is a basic idea of what the "cross" symbolizes? What I think we should ask ourselves are we going to be held prisoners to gangs because they are now wearing crosses, Catholic beads, etc? If the gang want to wear fruit-of-the loom underwear so be it. It is the majority of society that run scared, been out of tune, and lack the big balls to stand up and STOP THE MADNESS. There is never going to be a day in my life that I'm going to ever believe the "Cross" is gang related. So keep your crosses around your neck, and keep praying in fact double up on the prayers.   

September 13, 2008

Why blog it ...

Why blog?  While writing in my blog I have really no clue where it is going but I would like it to track my mind as I try to place structure to my life as it is ending for my kids to read when I have depart this earth. Oh yeah, and my doctor told me over and over again to write a book...boring. I would rather have open comments then a half baked uninteresting novel.

My kids maybe shocked, my friends may judge me, my husband may forgive me, and (I have already asked for forgiveness from whom it really matters) and you may stumble upon it and think what a waste.  But let me share my waste is someones else's Mother...Friend...Wife...Sister...Lover  So read on, or exit out.

September 12, 2008

Sick of the system...

OK let me get this clear. I'm sick of HMO's, doctors, Godzilla nurses, and no graduating brainless receptionist at the front desks. I'm sick of wearing my frown upside down for the sake of making you feel good about what you pretend to do. You are what: making me wait in the cold drafty so called waiting room for hours now, reading the same ole brown dried covered magazines with my name label on them that I brought in 6 visits ago, milking my insurance for each visit and each test ordered be them completed or not, taking my co-pay and adding another prescription to my ever growing garden of little brown labeled bottles all marked for 90 days, and lets not forget lets add one more referral that always is exciting. If I treated you as badly as you treat me would you pay me, come back or believe in me? Any comments...

Online Patient Navigator Program

Great News: The American Cancer Society is happy to announce its new Online Patient Navigator program. Now through Friday, Oct 3, the Great West Division is testing its Online Patient Navigator pilot program. At the conclusion of the test-run the program may become a permanent program.

Trained Patient Navigators guide patients, families and caregivers through their cancer experience by providing answers and resources on their computer screens, linking those coping with a cancer diagnosis to needed programs and services.

To chat in real time with an Online Patient Navigator between 5:30 am and 5:30 pm PST, log on to Online Patient Navigator. The service is FREE.