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Top things to not say to a brain tumor patient...

So over the past few months I have experienced some pretty dismissing comments. I'm actually amazed that people would say these things ...

Monday, December 26, 2016

Room at the Inn or The Night Baby Jesus Came to Stay

The doorbell rang just as we sat down to read. Luke 2, the story of the birth of Jesus was the plan. Wondering who it could be we opened the door, only to stare, stumped at the baby in the manger.

Baby Jesus was on our doorstep. No letter, no note, no idea of why he had come or who had put him there.


"So , what do we do with him?"
"Well, we start by bringing him inside."

There it is, the statement that caught my attention, "we start by bringing him inside". Isn't that the way it all begins? Simply by letting Christ into our hearts, into our lives.

Christmas Eve night and all the next day I pondered the meaning of the question of whether I let Christ into my life. Do I make room at my inn?

We searched for who he might belong to. My sons were certain that someone had given baby Jesus to us, I cautioned them that we had to be sure to try to find his owners. The quality and care with which he was wrapped had me concerned that he belonged in someone's beautiful nativity display. The manger was handmade, animal skins lined the bed, and the babe was wrapped in swaddling clothes. Herbs and hay padded the manger, making a soft and safe place for the baby to lay. Care and love was shown in every part of the bed. I think that Joseph and Mary would have shown such care, still I feared that someone was missing a vital piece to their holiday this year.

Christmas night I received a message- Baby Jesus had come to stay for the next year. A reminder to make room at our inn. After focusing on the beauty of the gift of that life and offering a year of random acts of service, we will have the opportunity to pass him on. We will choose a family and gift baby Jesus to them, a note will explain all, what a fun way to remember what is important.

I pray that my sons will always remember the year that baby Jesus came to stay. God bless and keep you.


Friday, December 23, 2016

Is Medical Marijuana a Viable Alternative for Pain Management?


 
Pain is a constant in my life. I live every moment breathing and working through this layer of distraction so that I can engage and function as normally as possible. I have worked with my doctors to exhaust any and all tools for pain management but the options available fall short. In my research on pain management tools to use in addition to a regimen of meditation and mindfulness, yoga, physical therapy, occupational therapy, nutritional decisions and physical activity I continually come across the idea of medical cannabis as a pain management tool. This is an emotionally charged subject and has been the cause for recent social upheaval and political discussion. Misinformation is rife and everyone seems to have an opinion. Voices cry on every side of whether the use of prescription cannabis is necessary. Some insist that medical need is an excuse for habitual users to avoid legal prosecution. Others argue that medical cannabis is the only option for competent pain relief without violent side-effects. Both sides are impassioned and express the belief that they are solely right. So, where is the resolution? Is there middle ground on the issue of medical cannabis?

I started my search to first find reputable resources that offer an unbiased and real look at the issue; science journals and medical texts often offer the most current information. I found many articles published by the National Institute of Health in their effort to share information as part of their report on activities and research.  In their article, “Marijuana and Cannabinoids”, the NIH explores the connection and statistics given in 2015 regarding what is known.  Currently, there are three classes of cannabinoids undergoing research as to the implications on management of pain for various conditions and disorders. In the year 2015 a total of $111 million dollars was spent to research funding regarding the use and properties of medical cannabis. A total of 49 projects currently underway are examining the therapeutic benefit of cannabinoids, with a total of $21 million dollars in funding provided in 2015. (“Marijuana and Cannabinoids”) Given these statistics and the vast amount of funds currently dedicated to solving these concerns I am left to conclude that there is enough encouraging evidence to support the use of cannabinoids as pain management tools.  So, why is there confusion? It appears to me that the research is being done, studies relating to neurobehavior and development are encouraging, and yet there remains a steady stream of vitriol against the idea of legalizing medical marijuana.

I found in a grant connected to this article that further studies are being conducted and about grant options available by the National Institute of Health that support the supposition that cannabis offers therapeutic benefit for chronic pain. According to the NIH, “Pain is a substantive health issue, where it is estimated that 100 million Americans suffer from chronic pain. Opioids have been increasingly used to treat chronic pain, and there has been an increase in the number of opiod prescriptions, which has caused a noncommitant rise in prescription opioid abuse. While opioids may be effective in treating chronic pain in some cases, other treatment options are desperately needed.” (“Developing the Therapeutic Potential”) I fall into this category and can offer real experiences of multiple opiates being used to mitigate pain and induce a sedative effect, allowing my body to recover and heal. Following the acute phase of my trauma I then had to find an alternative way to cope with the pain, more than a year later, multiple appointments, and alternative pain management options continue to leave me coping with daily pain. The problem of living with chronic pain has far reaching effects, leaving no part of a person’s life untouched. Additionally, side effects such as addiction and dependence occur with prescription medications at an increasing rate for patients. In recognition of the need for help and support of patients, multiple agencies have joined together to pursue options and share findings; agencies such as the National Institute on Drug Abuse, the National Cancer Institute, the National institute of Neurological Disorders and Stroke and many others (“Developing the Therapeutic Potential”). Specifically, research is being reviewed for study in areas of inflammation and pain. Review is set to evaluate therapeutic applications of cannabidoils in the specific areas of chemotherapy induced peripheral neuropathy, pain perception and general analgesia (“Developing the Therapeutic Potential”).  What the grant opportunities demonstrate is that multiple support agencies recognize the need for non-synthetic options that integrate well with the central and peripheral nervous system. Current pharmacological options are not meeting the need and are creating additional problems for patients and society in general. Patients need and deserve answers and options that do not create side effects such as addiction and dependence.

The Drug Enforcement Agency, or DEA, recently made some remarks concerning the legal status of medical marijuana. In a report they refused to alter the federal legal status of marijuana.  Studies cited by the DEA, as recently as August 2016, maintain that marijuana is a Schedule 1 drug. (Leger) Schedule 1 drugs are drugs that offer no verifiable medical properties and are thus considered to be used for recreational purposes only. In the same release of information the DEA indicates it has found that marijuana cannot truly be considered a “gateway drug” (Leger).  A gateway drug is one that leads to further experimentation and use of additional substances by the user. Going by what the DEA claims I am left to conclude that they have no evidentiary support to change the legal status of medical cannabidoils and until substantive research findings are produced to dispute that claim, there will be no change in the federal status of marijuana. Currently any use of cannabis is illegal, despite individual states making its use pharmacologically approved. Federal law trumps individual state mandate. The DEA makes allowances here and does not pursue prosecution of medical users, despite having the law on their side to do so. This ambivalent stance is confusing and leaves patients at a loss for where to go and what to do. After reviewing the statements made by the DEA I am left feeling like I have whiplash. On one side they refuse to recognize potential therapeutic benefit, on the other they refuse to pursue enforcing the laws that are in place to regulate the use of illicit drugs.  There has been no indication of a timeline or what may cause them to reconsider either the Schedule 1 classification or pursuit of prosecution for users. What has been created here is an unenforced law, one that weakens the status and value of the DEA in their unwillingness to make a decision about this issue.  I wondered what reasoning may be contributing to the position of the DEA; I turned to the FDA, the Food and Drug Administration.

In April of 2016 Bertha Madras, an expert in the field of medical pharmacology and biology, helped to clarify the position of medical cannabis and the FDA, or Food and Drug Administration.   Madras clearly explains that according to the definition and requirements of pharmacological drugs, cannabis simply does not fit the profile for medicine (Madras).  The FDA holds to five primary requirements for a drug. Those requirements include:

1.      Drug chemistry that is known, consistent, and replicable.

2.      Adequate safety studies have been conducted and reviewed.

3.      Sufficient number of controlled studies documenting measurable value.

4.      It must gain acceptance by qualified experts.

5.      Evidence and documentation must be widely available.  

Looking at the requirements for the FDA it then becomes easy to see why cannabidoils have not yet gained recognition from a legal standing as medicine (Madras). Like any flowering plant, cannabis plants and buds all produce differently in relation to potency, chemistry, and even vary by plant type. The NIH is currently working to address the need for testing and safety studies even while it works to distill and refine various cannabidoils such as THC and CBD. Acting to refine the oils acts to make effort to profile consistent chemistry and determine value to the oils themselves. After this process is refined and completed then concerns such as dosage and potency can be addressed and medical trials can begin. Increasing use of studies and grants will either prove or disprove that medical cannabis is an option for patients. 
Continued testing and refinement of the process is needed to help patients and provide safe medical supervision.  I found that in June 24, 2015, Dr. Nora Volkow testified before the Senate regarding International Narcotics Control. In her report she reviewed the limits and challenges of conducting medical research, potential outcomes and promising studies, and also reviewed what is currently being done to address the needs of patients. At that time, studies on specific neurological conditions offer glimmers of hope but have yet to offer substantive proof that marijuana has therapeutic properties (“Testimony of Nora D. Volkow”). Dr. Volkow went on to further explain that while some preliminary studies have been done into various cannabidoils, specific oils seem to be the key in treating chronic pain. The emerging research supports two emerging oils that relate the most to therapeutic benefit, CBD oil and THC. THC is the cannabidoil that contributes to the hallucinogenic effects, the “high” of marijuana use.  The CBD oil is being used currently as a plant extract base by some patients for regulation of seizures and other neurological trauma. Because it has no hallucinogenic effects, CBD oil is not illegal, nor is its use regulated. Studies into the effectiveness of CBD oil with chronic pain, however, are not promising. There has been no indication, to date, that CBD oil without THC offers any analgesic therapeutic benefit. There have been preliminary studies that demonstrate that THC and CBD oil, when used together, offer an analgesic effect for central and peripheral neuropathic pain (“Testimony of Nora D. Valkov”).  Peripheral neuropathy is a potential side effect of neurotrauma and surgery. Therefore a patient can survive and recover from a violent or traumatic injury such as concussion or brain tumor only to have the nervous system flare up. No known trigger, no known cure. The sensory nerves of the body simply fire as if they have been activated by some unknown trauma. I looked into providers. Who is using cannabidoils with patients?

With an excellent reputation for patient care and breakthrough treatment, The Mayo Clinic has forwarded studies into the use of medical marijuana and patient care. In a web article the Mayo Clinic outlines some of what they are doing for patients to fight the battle of peripheral neuropathy and other chronic pain conditions experienced by patients (“Medical Marijuana”).  Cannabidoils are seeing accepted use with patients experiencing such complications as seizure disorders, Amytropic Lateral  Sclerosis (ALS), and even chronic pain. According to the Mayo Clinic “Medical marijuana is marijuana used to treat disease or relieve symptoms. Marijuana is made from the dried leaved and buds of the cannabis sativa plant. It can be smoked, inhaled, or ingested in food or tea. Medical marijuana is also available as a pill or oil.” (“Medical Marijuana”).  Providers are reaching past recognized legal structure to provide patient care. A medical provider, seen as an authority in patient care and treatment, is using an unrecognized form of treatment for patients even while the regulating authorities refuse to make changes in classification and legal standing. 

Further supporting the idea that providers are moving beyond legal boundaries is the research being done in behalf of the National Cancer Institute. Working with complementary and adjunctive medicine, studies are being conducted into the use of cannabis and its impact on the side effects of cancer related treatment. Use of THC and CBD are showing a positive impact for patients experiencing such complications as loss of appetite, pain, and depression while undergoing chemotherapy (“Cannabis and Cannabinoids”). Along with alternative therapies such as massage and acupuncture, treatment of side effects with cannabis is currently being used to help patients in recovery. Initial findings support the idea that, working through the central nervous system and immune system, cannabidoil is able to have a therapeutic effect upon the body. Since these systems are both largely affected in cancer treatment, the benefits demonstrated to patients indicate that cannabis is effective in treatment (“Cannabis and Cannabinoids”).

What can I conclude based upon all the documentation and research being performed? What am I able to determine since recognized medical authorities are using medical cannabis in treatment and recovery, despite the legal status being one of a controlled Schedule 1 drug? Can medical marijuana be an option for patients who suffer from chronic pain? Maybe. The answer is, maybe. That is all that research and information can tell us at this time. Indications are enough to continue to fund research and development of dosage amounts and efficacy studies. Regulating agencies continue to be hesitant to change legal status due to lack of safety studies and sufficient data. Patients and providers are required to go outside recognized medical models because the options, opiates and NSAIDS, simply do not meet the needs of patients. In thinking about my own experiences and the possible implications, I am willing to consider the options and will simply give it more time. Medical providers and researchers are doing their best to find answers, patients are doing their best to live and function, and regulating agencies are making efforts to be good stewards in protecting the public. Patience and empathy are required as everyone works to do their best in finding answers. 

Resources:

“Developing the Therapeutic Potential of the Endocannabidoil System for Pain Treatment. PA-15-188.” NIH, Office of Extramural Research.  www.grants.nih.gov/grants/guide/pa-files/PA-15-188.html . Web. November 2016.

Leger, Donna Leinwand. “Marijuana to remain illegal under federal law, DEA says.” USA Today. August 11, 2016. www.usatoday.com/story/news/2016/08/11

Madras, Bertha. “5 Reasons Marijuana is not Medicine.” The Washington Post. April 29, 2016. www.washingtonpost.com/news/in-theory/wp/2016/04/29/5-reasons-marijuana-is-not-medicine. Web. November 2016.

 “Marijuana and Cannabinoids.” NIH, National Institute of Health.  www.drugabuse.gov/drugs-abuse/marijuana/nih-research-marijuana-cannabinoids. Web. November 2016.

 “Medical Marijuana.” Mayo Clinic. Healthy Lifestyle Consumer health. http://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/medical-marijuana/art-20137855. November 2016.

 “Testimony of Nora D. Volkow on Cannabidoil Barriers to Research and Potential Medical Benefits Before Senate Caucus on International Narcotics Control.” NIH, National Institute of Health.  http://www.hhs.gov/about/agencies/asl/testimony/2015-06/cannabidiol-barriers-to-research-and-potential-medical-benefits/index.html. Web. November 2016.

“Cannabis and Cannabinoids- Health Professionals Version.” NIH: National Cancer Institute. http://www.cancer.ca/en/cancer-information/diagnosis-and-treatment/complementary-therapies/medical-marijuana-and-cannabinoids/ Web. November 2016.

Wednesday, December 14, 2016

What have I been up to? This...


“WARRIOR”

I have to go. There is no other choice. No way to say no. No denial of what is to come; all that is in doubt is how soon. I have a commander that is one of the best. He is respected and trusted. My team is supportive and always has my back. The commander will guide the mission. I don’t know how long the mission will last but hopes are that it will not be long.

I hope for a short mission. I want to get back, back to my life, my real life; the one with kids and laughter, not grim silence and waiting. I want to get there fast. If I could run out the door and make this mission disappear, I would. Instead, I wait.

Waiting is a tension all its own. Muscles tight, holding in everything I want to say but am afraid to voice. I work to stay upbeat, talk about anything but what is coming. I make plans; plans for next month, next year, anything to avoid thinking of now. My heart is full, brimming over and waiting for the first crack in my armor to appear. I fear what will come pouring out when my armor gives way. No one can hold this pressure. The human heart was made to bear only so much.

In and out, I focus only on breathing.

I hear echoes up and down the hallway outside but no one enters. Rustles outside betray the presence of others, they know what is coming, the mission I am facing. The clothes I wear are not my own. They are scratchy and smell of nothing. That same nothing permeates the room. A room full but filled with emptiness. I wait; it’s all I can do.

I am isolated, alone, sitting here in myself with only memories as companions. I prepare, as much as anyone can for what is to come. The word comes, tomorrow.

Tomorrow, I go to war. What am I leaving behind? What message do I leave for my family, my sons? They make you update your will, just in case, they say. What happens if I don’t make it home? God, I don’t know how to do this. Rest, they want me to rest. I can’t imagine sleeping now. Clothes not my own, bed not my own, I don’t even smell like myself. I have absorbed the nothing of the room. I know that I am as prepared as I can be, but I am not prepared at all.

I wait. A last goodbye and I wait. All is ready. I head out.

Smell. That is the first thing I notice, the smell. Blood, antiseptic cleaner, All I smell is sterility. The odor burns my nose. I want to turn away but am unable to move. Sounds blur into the hum of buzzing bees. A background vibration that is unfamiliar and unrecognizable as sound. The vibration exists at the edges of my consciousness. My eyes, I cannot open them. Lashes flutter in futile effort. A hand grasps mine. Firm and gentle, the touch is familiar.

In and out, I focus only on breathing.

Colors flash behind my eyes as the buzz of bees continues. I find myself surfacing only to swim in a pool of flame. God, the fire burns. Lights flash as red, grey, and white; flares that are overwhelming and deepen my fatigue. I swim in the burning flames and they lick at my nerves. My neck screams, “Make it stop!”All I know is an agony of fire. Burning acid that eats away at my awareness.

Words I can see but cannot say. I open my mouth and no sound comes out. The hand squeezes mine. It grips my wrist, rubbing in circles, soothing and bringing me closer, out of the pain. A buzz. Something tickles my mind through the pain; a brush of butterfly wings. Something I know, but what?

Voice. It’s a voice I hear. A voice I know. What is it? More voices, some I know, some are new. He is here. I grip the hand in my weakened grasp. He is here, that means I made it. Oh God, I made it. He is here, I am not alone.

The hum comes again. Three, three voices. I hear three voices. Words. I hear words. Through the pool of fire, they come.

“I think she’s waking up, Dad.”

A buzz. Nurse? Nurse, that’s the word. I’m in a hospital. O.K. A nurse makes sense.

Fire, God, make it stop. Coming back is swimming through a pool of fire. Flames lick and flash, lashing deeply into my neck. I try to move but my body is bruised and beaten, lying here on the bed. No control, no power, no strength. God, it burns.

“Neck. Hurts.”

“Yes, it will hurt. The surgeon had to cut through some muscles to get to the tumor. Rest.”

“No. Neck. Hurts.” My voice rasps out words as whispers. So much effort to do so little.

“I know.” Pacifying and dismissive the words come. Unheard as the pain flares higher.

I gather strength, strength I do not know I have. “My sterno-ceido-mastoid muscle is on fucking fire. Adjust the goddamn pillow.”

“Oh.” Finally, understanding.

Relief rolls in like a cooling wave of clouds; a fog that blurs the edges of the fire and brings peace. Enfolded, supported, released from the acute pain of burning. At my lips a cup is pressed so gently given as if a first kiss. Water; cool, soothing, sweet slides inside my parched mouth. I soak it in past dry lips. Desert throat; raw, worn, and tasteless. Arid. Barren. Without life. God, I am so tired.

“How do you feel?”

What? Why do you want me to answer questions? Why? No, I just want to sleep. No more fire. No more burning. Awake is pain. So much pain, pressure, fatigue soaked inside every cell. “O.K.”

“Your dad is here. You did great.” Voice steeped in safety and warm with love.

“Hi. What’s going on?” I croak out through my raw throat. I still can’t see.  My eyes are too heavy to open them. Lashes flit and flutter impotently. Nothing aside from a blur of red and white can be seen. I smell blood, lots of blood, my blood. Iodine, chemicals, rubbing alcohol, and bleach; the odors are assaultive. I want to turn away, hide, but I cannot move. Trussed and tucked onto a table, immobile and contained.

“Water.” I take a bigger sip and immediately my body rebels. I throw up and cannot stop. Stomach acid reawakens the fire in my throat. Calls for the nurse are answered immediately in ICU. Pricks of needles, medicine brings relief, but the damage is done. It triggers a coughing fit. Uncontrollable and violent, it has been a day of violence. Each spasm tears through my skull like thunder. The air is forced and ripped from my lungs, already bruised and tortured from surgery. Hands soothe and pat. More medicine is given through IV lines. The attack retreats.

“Surgery was longer than they thought. You were in for five and a half hours. They think they got it all, but it was more than they thought. Dad got here just as you came out. He drove without stopping to get here in time. What do you want me to tell everyone?”

What to tell everyone? I absorbed it, this moment. I made it. I was out. I was in the after. We fought and won. Thank God, we won. I hurt everywhere, but I have a chance, a chance for a life. I made it. I can do this. I did do this. The battle is won but the fight remains; the fight for life, a future, for more than now. Thoughts are fragmented and elusive. This I grasp, every day, every moment is a battle to be fought, a battle to not give up, to not give in to the pain, loss, and sorrow. I breathe, in and out, unable to grasp the bigness of hope.

What to tell everyone? Tell them God is good. Tell them second chances are real. Tell them that pain and grief and sorrow are not the end. Tell them that they can learn to see without sight, that they can learn to hear around deafness. Tell them that I can learn to think beyond my damaged and broken brain. Tell that that hope lives and shines its glory, draping the pain in an iridescence unsurpassed by any temporal beauty. Tell them that hope is everything and that potential is infinite.

We are all warriors in this life. A fight we are ill prepared to handle alone, but then we are not meant to. We are not meant to be alone. We are meant to create connections, relationships, reach outside of ourselves. We are meant to learn that pain is not everything, that it does not win if we don’t let it. There are good days and bad days. There is still pain, more than I ever believed possible. There is still danger and there are daily challenges. What a thrilling adventure life is. I am blessed to be able to live it. What to tell everyone?

“Tell them I am OK, and thank you.”