More New Updates for Brain Tumor Awareness Month

Exciting things continue to occur as Go Gray for May reaches its middle. New research and breakthroughs are being posted and it is reaching out to the most violent and aggressive forms of tumor, in ways that are minimally invasive. I am so excited for those who suffer from these even more aggressive forms of tumor and cancer.

Newly released information shares a way to treat glioblastoma and it is working. Increased clinical trials are the next step. Medscape: Glioblastoma and Virus Vaccines

Support groups also offer hope as this is the biggest indicator of long term quality of life for survivors.

Brain Trust Support

Brain Cancer Support

God bless you! You've got this.

Why May?

Why May for Brain Tumor Awareness? May is flowers and Mothers Day. It is about spring and beauty.

Here are a few things you may not know:

3:1 - yes, this is another example of how being of the feminine gender creates increased chances of certain types of brain tumor. Some are looking at parallels of occurrences of breast cancer and ovarian cancer in addition to meningioma. Many of us hope that there is no connection. Most of all, we pray for a cure. We pray that no family loses another person to brain tumor, of any kind.

Progress: Research and Advances in Care

There is a lot going on in the field of research and study. Some of my friends from around the world are becoming involved in studies and researches being conducted. Books are being released about the options of treatment. The blood-brain barrier, which prevented many existing treatments from being used with brain tumor, is being explored. Natural and artificial treatment methods and forms of tumor control are being evaluated as options. Some have even found ways to use a bodies own DNA to create tumor killing cells.

All the articles and information is, at times, both exciting and overwhelming. With many unknown causes and much still to be learned, it may take all types of treatment to offer a cure for the conditions many live with daily.


Blood-Brain Progress
     Canadian Research

"Doctors at Sunnybrook Health Sciences Centre in Toronto, Ontario, Canada, have noninvasively penetrated the blood-brain barrier to deliver a chemotherapeutic agent directly into a patient’s malignant brain tumor."


Tumor Identification in Surgery
     Glioblastoma Research

"Through OCT mapping, surgeons can differentiate cancerous tissue (red) from healthy tissue (green). "




Harnessing the DNA
     Immuno-therapy
 
' With immune therapies, it turns out you're just engendering the immune system," James Graham Brown Cancer Center's Dr. Jason Chesney said. "You're training it to get activated against the cancer and a lot of the immune therapies we use, we don't have to continue. We can give them for three or four months, and then stop and watch the patient." '


Sound Wave Technology
     Ultrasound and Tumors

"High intensity focused ultrasound or HIFU is a type of cancer treatment. Doctors give the treatment using a machine that gives off high frequency sound waves. These waves deliver a strong beam to a specific part of a cancer. Some cells die when this high intensity ultrasound beam is focused directly onto them."

     The Tumor- John Grisham



Alternative Choices
     Frankincense Oil

"In 2013, the University of Leicester conveniently published just before Christmas that has rekindled this theory. According to their press release, the Omani government-funded research has (for the first time) uncovered that frankincense has the ability to target cancer cells in late-stage ovarian cancer patients. And this all appeared to be due to AKBA (acetyl-11-keto-beta-boswellic acid)."

     Medical marijuana- Cannaboils

'Medical marijuana is gaining acceptance, but could it even help kids? Dr. William Courtney has seen it happen, and on Friday, told HuffPost Live host Alyona Minkovski about it. Saying he was "quite a skeptic 5 or 6 years ago", Dr. Courtney continued that "my youngest patient is 8 months old, and had a very massive centrally located inoperable brain tumor." The child's father pushed for non-traditional treatment utilizing cannabis.
"They were putting cannabinoid oil on the baby's pacifier twice a day, increasing the dose... And within two months there was a dramatic reduction, enough that the pediatric oncologist allowed them to go ahead with not pursuing traditional therapy."'

For Fun
     Brain Freeze
     Chocolate and the Brain
     Brain Tumor T-shirts from a survivor

So much reading, but so many different areas and forms of care and being created that offer hope and the possibility for life. Being given a life sentence is devastating. it changes you in many ways. Even if you are blessed to have what is considered a benign tumor, it still changes you and affects your very life. Some wait, with no possibility of healing or prevention, and watch as they worsen and lose who they are. Loss of executive functioning skills, memory, emotional management, even personality changes are common. Seizure is a constant risk. Hope offers a chance for more. To move beyond the limits of the mind and let the body do what it does best, heal itself.

God bless and keep you. We live in exciting times.

"If You Would Just..."

I know it isn't only me hearing well-meaning but tacky bullshit advice. Working in the mental health field you hear all the time "If they would try harder", "If you would just look on the bright side", "I had the same thing happen and it wasn't that bad." Anyone who imagines that this only happens with an invisible illness, let me break it to you, it doesn't.

It rarely happens, thank goodness, because I have pretty incredible friends but I have found that anytime you are dealing with a health issue, everyone's got an opinion. Most people keep their opinions to themselves, but there is always one that is so excited by the seminar, webinar, YouTube video, or article that they just saw that it is now their place to tell you how to be healed. Or to preach on the benefits of how quickly you would get better "If you would just..."

For all my Meningioma mommas and poppas out there let me say, "Go suck an egg." If all it took was a supplement, exercise, yoga, or meditation we would be healed. If the oil, probiotic, or organic food made my tumor disappear it would be gone. I still have a little souvenir making my life harder than it has to be.

Aside from having to defend my lifestyle, which is stupid, let me clear up a few things.

1. Not all tumors are cancerous.
2. Meningiomas have three basic causes; radiation, heredity, and prior injury. Possible links between the hormone progesterone are also being looked at for increasing growth.
3. Meningioma is only one type of tumor, there are many others.
4. Benign can still kill you. My tumor was benign and my doctors would not even give me a choice of care. I was admitted immediately and told it was surgery or I was going to die, I even had a general timeline of how long this would take. (They weren't talking months.)

Believing you know how someone else should live and heal is among the worst assumptions you can make. Let's review how to respond appropriately when dealing with someone disclosing health concerns.

• Them: "I have...I'm dealing with...I suffer from..."
• You: "That must be hard. Can I bring you dinner?" -or- "Thank you for sharing and trusting me. I would like to help. Can I watch your kids one day or drive you to an appointment?" -or- "Wow. I'm sorry."

See? You don't have to go any further. Empathy is looking at something from the other persons viewpoint. Telling is a big deal. The people I know don't need special treatment, they just don't need to deal with your emotional fallout on top of what they are already coping with. They need to be heard and acknowledged. That is it. Use a later time to inform yourself about their condition or talk about questions.

IF, and I strongly stress if you believe, after careful consideration, that the information is helpful and will benefit them, pass on the resource. Do not be surprised if they already have seen it and are not exactly thrilled about getting it again. You can also create a file of information to save for when or if they ever ask.

So, in conclusion:

"If you would just...show concern for who we are and express your love and support, that would be great."

Rudolph- That Amazing Reindeer

On a December night in Chicago several years ago, a little girl climbed onto her father's lap and asked a question. It was a simple question, asked in a child's curiosity, yet it had a heartrending effect on Robert May.

"Daddy," four year old Barbara asked, "Why isn't my Mommy just like everybody else's mommy?"

Bob May stole a glance across his shabby two-room apartment. On a couch lay his young wife, Evelyn, racked with cancer. For two years she had been bedridden; for two years all Bob's income and smaller savings had gone to pay for treatments and medicines. The terrible ordeal had shattered two adult lives. Now Bob suddenly realized the happiness of his daughter was also in jeopardy. As he ran his fingers through Barbara's hair, he prayed for some satisfactory answer to her question.

Bob May knew only too well what it meant to be "different". As a child he had been weak and delicate. With the innocent cruelty of children, his playmates had continually goaded the stunted, skinny lad to tears. Later at Dartmouth, from which he graduated in 1926, Bob May was so small he was always mistaken as someone's little brother. Nor was his adult life much happier. Unlike many of his classmates who floated into plush jobs, Bob became a lowly copy writer for Montgomery Ward, the big Chicago mail order house. Now at thirty-three, Bob was deeper in debt, depressed and sad.

Although Bob didn't know at the time, the answer he gave the tousled haired child on his lap was to bring him fame and fortune. It was also to bring joy to countless thousands of children like his own Barbara. On that December night in the shabby Chicago apartment, Bob cradles his little girl's head against his shoulder and begins to tell a story...

"Once upon a time there was a reindeer named Rudolph, the only reindeer in the world with a big red nose. Naturally people called him Rudolph the Red Nosed Reindeer." As Bob went on to tell about Rudolph, he tried desperately to communicate to Barbara the knowledge that, even though some creatures of God are strange and different, they often enjoy the miraculous power to make others happy.

Rudolph, Bob explained, was terribly embarrassed by his unique nose. Other reindeer laughed at him; his mother and father and sister were mortified too. Even Rudolph wallowed in self-pity.

"Why was I born with such a terrible nose?"

"Well," continued Bob, "One Christmas Eve, Santa Claus got his team of husky reindeer, Dasher, Dancer, Prancer and Vixen ready for their yearly trip around the world. The entire reindeer community assembled to cheer these great heroes on their way. But terrible fog engulfed the earth that evening, and Santa knew the mist was so thick he wouldn't be able to find any chimney.

Suddenly Rudolph appeared, his red nose glowing brighter than ever, Santa sensed at once here was the answer to his perplexing problem. He led Rudolph to the front of the sleigh, fastened the harness and climbed in. They were off! Rudolph guided Santa safely to every chimney that night. Rain, fog, snow and sleet; noting bothered Rudolph, for his nose penetrated the fog like a beacon.

And so it was that Rudolph became the most famous and beloved reindeer. The huge red nose he once hid in shame was now the envy of every buck and doe in the reindeer world. Santa Claus told everyone that Rudolph had saved the day and from that Christmas, Rudolph has been living serenely happy. "

Little Barbara laughed with glee when her father finished. Every  night she begged him to repeat he tale until finally Bob could rattle it off in his sleep. Then at Christmas time he decided to make the story into a poem like "The Night before Christmas" and prepare it in bookish form illustrated with crude pictures, for Barbara's personal gift.

Night after night, Bob worked on the verses after Barbara had gone to bed for he was determined his daughter should have a worthwhile gift, even though he could not afford to buy one. Then as Bob was about to put the finishing touches on Rudolph, tragedy struck. Evelyn May died.  Bob, his hopes crushed, turned to Barbara as his chief comfort. Yet, despite his grief, he sat at his desk in the quiet now lonely apartment, and worked on "Rudolph" with tears in his eyes.

Shortly after Barbara had cried with joy over his handmade gift on Christmas morning, Bob was asked to an employee's holiday party at Montgomery Ward. He didn't want to go but his office associates insisted. When Bob finally agreed, he took with him the poem and read it to the crowd. At first the noisy throng listened in laughter and gaiety. Then they became silent, and at the end, broke into spontaneous applause. That was in 1938.

By Christmas 1947, some 6,000,000 copies of the booklet had been given away or sold making Rudolph one of the most widely distributed books in the world. The demand for Rudolph sponsored products, increased so much in variety and number that educators and historians predicted Rudolph would come to occupy a permanent niche in the Christmas legend.

The above account was given to me years ago. History sometimes tells different tales of the origin of a story. Below you can see and read with Barbara the original manuscript and read other thoughts on the origin of Rudolph. For personal reasons. I still love the above story. I am a different kind of mommy without the ability to run and roughhouse with my young boys. There is still joy and maybe like Rudolph, I will also find purpose in this new life.

 Robert May and Rudolph