An open letter to all Senators and State representatives

Dear Senator;

I see today that protections for pre-existing conditions do not yet exist. This saddens me, I am dealing with a brain tumor that rests next to my brain stem, I am also dealing with a dear friend who has had a brain tumor spread.

I want to tell you about him, he is a man of faith and family. He has lived a clean life, is raising three beautiful children with his wife and makes every effort to live ethically and morally well. He doesn't believe in sitting back and waiting for life to happen. He has worked for years in community programs and attended law school while coping with this medical challenge. Yesterday he was taken in for surgery to attempt to remove a tumor that was impacting his speech.

I look at what his family is going through and I know it is not the only story like this. Like me, he does not expect a handout or to take from others. What we do need is a fair chance, to not be taken advantage of, to be treated as individuals worth being protected. We have value and that value is one that teaches compassion and ethical treatment of all individuals. We pay into health care programs and work to our best abilities to make contributions to the community and our families. Through no fault of our own, we have faced a brain tumor diagnosis, no lifestyle choice led to our condition. We don't ask for a handout, all we ask is a chance.

Please, don't make surviving and thriving through a medical crisis a liability. Don't take away protections that would allow insurance companies to prey upon the weak again. Many say it will not happen, sadly this is not true, it already has happened, many times before the ACA. Social media sites are flooded with requests for financial aid and support to help pay for medical costs or claims denied by insurance carriers.

Those of us who fight tumors and cancer are every day warriors. As voices of different experience we offer tremendous value to the world around us. We know what it is to face losing everything. We know the value of the simple and the meek. We know and understand the impact of pain and what it can teach us. We also know the joy of hope and rising through crisis. I think the world needs more hope and not less. We need more triumph in the face of adversity and more grace under pressure. Please protect us from those who would prey upon our times of weakness. Let me continue to be a warrior and fight for my family and the families and lives of those like me. We deserve a fair shot at life, but only you can help us to protect it. We need your help.

May God bless you.

Anti-Tumor use of Cannabis Oil

Still looking and collecting data regarding the use of medical marijuana. Trying to find reputable information is incredibly difficult. I did find that historically it wasn't until the 1970's when cannabis was added as a schedule 1 drug that it was considered illegal. Until that time, while not common, it was easier to find access to medical marijuana. This makes me angry. No studies were widely done and as such there is no benefit to drug companies now to perform the research as it cuts off the supply of patients for other forms of treatment. I have never been so angry about a serious lack of care for patients in the medical community. I am furious that there is not more being done.

Suffering from a noncancerous tumor that was trying to take my life I wonder why there is not more being done. I am a Christian. I have never smoked, done drugs of any kind, or even drunk alcohol. I'm a lower middle class mother living in the suburbs of a larger city. And a tumor almost killed me. The way that the drug companies and modern medical field work, I will not have access to a simple plant oil that could, without the risks of invasive brain surgery, save my life.

Essentially, I feel very much as if I have been sentenced to a painful death because someone else can benefit financially from my pain. I am angry. A recent scan has shown a second cyst forming. I am scared. I don't know what will happen. In six months it has started and grown to be 1 cm in diameter already. I have changed my stress levels, adjusted my eating, I exercise daily. This is a game of Russian roulette and drug companies and working to ensure that my gun has five bullets instead of one.


National Cancer Institute statements on Cannabis and Tumor Reduction

Bills, Statements and Explaination of Benefits

So much paperwork. I constantly amazes me at the amount of documentation required for my case. The case notes, updates and reviews are enormous. My personal medical file has gone from reasonable to unbelievable. I have a briefcase that holds my files, MRI's, and medical payment information.

With brain surgery you can pretty much expect to either be on a payment plan or on financial assistance. Keeping track of payment dates and ongoing care is pretty fatiguing. Sometimes I pay a bill and then check to see later if I double paid. For one event there is the basic bill, then an explanation of benefits from insurance, then a letter or receipt for paid bill. Not only that but I also get the fun job of maintaining copies of current treatment plans. Why, you may ask? Well, I see five different professionals who work on my case. This does not include various radiologists and test results that I may be sent for.

Can we just take a reality check. I have brain surgery in May of 2015. I have brain damage and am still plagued with deafness, cognitive overwhelm and sensitivity to light and sound. Trying to organize this information, let alone try to understand all that is going, on wears me out. That is a job in and of itself.

I admit I sometimes just do what they tell me to because I can't keep it straight. In this I feel out of control and very vulnerable. It is not a comfortable feeling. It takes me days to work through the anxiety associated with trying to understand. So, I put it away until next month. When I will get to do it all over again.

Oh, and the best part- my follow-ups are next month. More appointments

 

and payments on the way.

Taken Seriously

"No, it shouldn't be causing that. You are not really feeling that."

I can't begin to tell you how often I hear cries from others suffering brain trauma that report after seeing their doctor that they were ignored, talked over, or told that they were imagining things. The feeling of invalidation, abandonment, and outright confusion is awful. It is ok to be angry when you don't feel heard. Say it in a professional and supportive way. I have a few things that help me to be heard and address concerns when I see my doctor.

1. Write it down. Make and keep a list of questions in a dedicated spot that you will take with you for appointments. Be sure to leave space for answers. This provides clear guidance of what is going on and specific concerns you have as well as the answers from your doctor.
2. Request records. I am always requesting records of the previous notes at my appointments. This allows me to keep my own copies and often doctors do not have things organized from other providers unless they have a concern. I have provided copies to my rehab team as needed and this has helped to ensure clear and professional communication between all members of the team. In a few circumstances I caught how my notes had not been recorded properly, this could have created problems. With my copies it was able to be resolved correctly.
3. Have an advocate. This is a huge emotional experience. My mind does not recall everything well when it comes to appointments and reporting symptoms. Another person, one close to you can stay focused and ensure that needs are addressed. They also provide an additional sounding board if concerns arise.
4. Keep a calendar. Log things such as activity level, foods, and symptoms as needed. If you report severe headaches but are not being taken seriously, log them. No one can argue with a calendar showing that you are having severe headaches three to four times per week. (This was one tip I tracked before that helped them find my tumor to begin with.) Tracking my food intake helped me to identify that sugar and processed foods were increasing my pain levels and bad days, by decreasing those and changing my eating I was able to help reduce my own symptoms.
5. Be approachable. Develop relationships with supportive providers. All doctors have nurses and assistants that they trust and work with. Building positive relationships with these people will help you to be heard and taken seriously. When the team becomes invested in you as a person, your case will receive the attention it needs. They are in this field because they want to help, appeal to that. I believe firmly that my neurologist saved my life. I have no problem telling him that. By working with his team, I am also able to get the emotional care I need.

You can be heard. You can stand up for yourself in a kind way. You can provide records of dates and times that your symptoms are problematic. It is possible to do many of these things on your own, if necessary. I still bring someone along sometimes when I need another perspective. I accept that my brain is damaged. My memory is terrible. So, I need help. Look at what you need. You can do this. It is possible.

Medical Marijuana

I was asked by one of my team a few weeks ago to look into the applications of medical marijuana, specifically the hemp seed (which has no THC) on tumor reduction and brain function. I have spoken to two other members of my team; both have encouraged a discussion with my neurologist. That's three of five.

This threw me for a complete loop as I tried to wrap my head around it before even trying to do any research, this is very slow for me.  You want me to ask my neurologist about what?

After weeks of digging through online files and trying to find my way past all the pothead culture, I have found a few articles that may help. In addition there is some exciting research into synthesized medications that may be able to address inoperable meningioma. (I will post more as I learn more.) Here are the (very) few articles I was able to find that have anything intelligent and reputable to say.

This article is on cancer but many of the same principles of treatment apply to brain tumor treatment. http://abcnews.go.com/Health/toddler-cancer-takes-cannabis-oil/story?id=15981324

Huffpost followed up on a documented story of recovery. http://www.huffingtonpost.com/2012/12/01/cannabis-for-infants-brai_n_2224898.html

This is the article written prior to the Huffpost article on the same story. http://jeffreydachmd.com/2014/04/cannabis-oil-brain-tumor-remission-jeffrey-dach-md/

As you can see there is not much to find that is not from sites that promote pot culture; what there is to find is both intriguing and challenging. If there is a natural solution that makes use of the bodies own T-cells to combat inoperable tumors, why are we waiting to begin trials? For many with inoperable tumors there is nothing to lose, but everyday they lose a little more of themselves until the brain can no longer function. The medical field would be so excited if a synthetically produced drug was able to achieve similar results. This is both hard and frustrating to navigate as a brain tumor survivor.

One day at a time, I tell myself. There is hope. That is the future and I am here to live in the present. I can do this. God bless.