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.

Go Grey in May

May is Brain Tumor Awareness month.  Go Grey in May. The world is getting closer to a cure and every day warriors battle on. Some live with their tumors having regular scans and praying for no change. Others have violent and invasive surgeries praying that the deficits from surgery will be less than those caused by the tumor. Many live with multiple tumors. Updated research shows that 50% of meningioma tumors will regrow by 10-20 years post surgery. Constant evaluations. Regular reviews. Specialist visits. All this is part of the life of a brain tumor patient. Every day in May I will explore another aspect of this journey.

Lucky

I feel stuck in a story of hope and loss, grief and healing. Right now things are never just one way. There are bad days but they are balanced out with incredible moments. Snippets that, thanks to the removal of my tumor, I can remember and reflect on. So much I don't control. I begin each week, each day with a plan or an idea of what I would like to do. By lunchtime that plan has usually changed. I know I'm not social. I know that being home is comfortable. I have great friends that draw me out, but it is so easy to slip into patterns of complacency. I think that scares me the most. The moment I stop pushing, I fear that I am lost.

No one knows yet what TBI and brain tumor patients are capable of. Some seem to suffer no ill effects at first but traumas can show up years later after the triggering event. Uninformed doctors and other professionals then continue to build on myths with outdated and ill-informed opinions.

I found myself quite agitated today confronting an opinion, expressed in the news media. Let's just say that the opinion/information expressed was minimizing and demeaning for those like me who struggle daily with recovery. Remove it, recover, no ill effects. This was the basic idea expressed. It's not a big deal. The tumor doesn't cause symptoms. It's benign, you're lucky.

I know I'm lucky, not because the tumor is considered benign, but because I lived.

I lived.

This is my story for the past 11 months.

Someone familiar with the nature of the meningioma tissue but not my tumor would say that there was no harm done. My tumor was not integrated with other tissues. It did not grow out of my neurons, but out of the protective covering of my brain. The tissue was fibrous, thick, and heavy. It was protective, but it still almost killed me.

It surrounded my left cranial nerves, it was crushing my midbrain, it had compressed my cerebellum, displacing the structure and the pressure had caused my frontal lobe to swell dangerously. My tumor had developed a network of vessels and structures to support it. Each vessel had to be cauterized before more tissue could be removed. Carved out one piece at a time because of the integration of my nerves. The supportive structure for my cerebrospinal fluid, CV4, had ben completely compressed. Headaches, my noticeable symptom for the past few years, were likely caused by the pressure buildup of "not enough room".

Something had to give. It was me. I almost lost me.

I am lucky.

I am lucky to have had the surgeon I did. Lucky that the ER doctor didn't assume that since I was a woman I was just overreacting. Lucky that I had family and friends that rallied to support my family in this trial. I am lucky, not because it was benign, but because I still live. Then again, I do believe that luck had little to do with it. God is good. Life is worth living fully. Every moment has beauty if we take the time to see it. Slow down, look around you. The moments are there.

God bless.

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.

Answers; Some Good and Some Not So Good, but Livable

We heard from the neurosurgeons office. Relief!

I do still have a brain tumor. The tumor is a residual tumor that has been hiding and is stable. It was missed at my 1 month follow-up scan by the nurse practitioner. My neurosurgeon has been tracking it. (Communication people!) He is satisfied that it is stable, not growing, and no surgery is indicated at this time. We do not need a biopsy. Because it is a left over portion, we don't need to fear cancerous regrowth because it is not new growth.

The tissue used to close my craniectomy is something called DuraGen. It is more dense and can incorporate itself into the surrounding tissue, unlike DuraSeal. There is no reconstructive surgery needed. It is not as strong as my skull bone would have been, but it is sufficient for most daily activities. Again, clear and appropriate communication would have helped to decrease huge amounts of anxiety.

Referral to a neuropsychologist will follow with attention being given to my apparent lack of progress in some areas, as well as a provider more able to answer functional questions and concerns.

In summary: No surgery at this time or the forseeable future. Communication would have helped to clear up a lot of our concerns. Needless to say, I will not be seeing the supporting nurse practitioner from my first visits again. All of my case information has been transferred to S, and she will now conference directly with my neurosurgeon. If you wondered, the doctor has been made very aware of the concerns created from lack of communication and professionalism of his last provider. Now, off to write a very appreciative "Thank you" for the answers we received as well as the referral for support.

DuraGen

The DuraGen XS(TM) dural graft is the latest generation in Integra's line of duraplasty materials based on Integra's market leading absorbable collagen matrix technology. Integra launched DuraGen(R) Dural Graft Matrix, the first onlay collagen graft for dural repair, in 1999. This was followed by the launch of DuraGen Plus(R) Dural Regeneration Matrix in 2003. Subsequently, Suturable DuraGen(TM) Dural Regeneration Matrix was brought to market in 2005. Following the 1999 introduction of DuraGen(R), the Integra family of duraplasty materials rapidly became the standard of care for sutureless closure of dural defects in the U.S.A.
"The introduction of DuraGen XS(TM) Dural Regeneration Matrix demonstrates Integra's sustained commitment to providing the neurosurgical community with innovative technology and materials for the management of dural defects. DuraGen XS(TM) has a higher collagen content while maintaining the same porous structure found in our DuraGen Plus(R) materials. The resulting graft is stronger and more robust," said Mark Spilker, Ph.D., Integra's Vice President of Research and Development.
Based on available procedural data, Integra estimates that DuraGen XS(TM) and other DuraGen(R) dural grafts have the potential to be used in over 225,000 neurosurgical procedures annually in the U.S.
The dura mater is a tough, fibrous membrane that surrounds and protects the tissues of the brain and spinal cord. Head and spinal injuries often result in laceration of the dura mater and neurosurgical procedures require the opening or removal of the dura mater to gain access to the delicate tissues contained within. In both cases, effective dural closure is imperative to prevent cerebrospinal fluid leaks and facilitate wound healing. Dural defects may be repaired with dural graft substitutes. The onlay graft technique, possible with Integra DuraGen(R) dural grafts, allows neurosurgeons to conclude operations more efficiently than when using materials that require sutures.