Being indifferent about racism and hate does not exempt you from its reality.

Like many, I am still reeling from this election outcome. There has been so much that has gone down over the past week that has been saddening and disturbing. On the one hand, Hillary Clinton is on track to become the candidate who has received the second most votes in a presidential election (compared to Barack Obama) and still lost. She has now received over 1 million more votes than President-Elect Donald Trump.  On the other, hundreds of reports of racist acts and attacks against immigrants and People of Color have been flooding news headlines and we now know that Stephen Bannon (known for his Anti-Semitism, racist and misogynistic remarks) has gained a top position in the white house next to Donald Trump.

Last night I listened to Hillary’s speech that she made at the Children’s Defense Fund (her first public appearance since her concession speech last week). I listened as she spoke about having days where she just wanted to curl up into a ball and never leave her house again. I listened as she spoke of a dream involving her mother and how proud she would be that she had come as far as she had. I listened as she emphasized an important message for her supporters and those who fight for democracy and the wellbeing of others. Her message was empathetic and powerful. Never give up.

As I started my day this morning, I began contemplating the importance of the next 4 years, and what I needed to do to help push the movement forward.  I laughed at the fact that someone close to me registered me to have subscriptions to the Trump Campaign; the NRA; Fox News; and the Weld Republican Party in Colorado. This individual very likely saw a post I placed on my Facebook page about donating to Planned Parenthood in Mike Pence’s name. Well played my friend, or more than likely, family member. I, at least, was willing to publicly announce my support while you chose to hide behind your keyboard. You see, my family raised me to be proud and speak up for what is right, not hide behind a computer screen because you don’t want me to know who you are. Alas, I digress. I thought long and hard about the challenges we will face over the next four years and the issue of Racism and anti-Semitism immediately came to mind.

You see, whether you are willing to admit it or not, we are all racists in some sense of the word, especially when we fall into the Caucasian category. Now before you get angry and curse your at your computer, hear me out. I am not sitting here saying you are specifically a racist individual in the traditional sense. I am not saying that you support segregation, or lynching, or slavery, or Jim Crow, the KKK, or any of the “traditional” racist sentiment. In fact, up until this recent election, I was more optimistic that those sects of society had essentially died off. I feel differently about that now and you should too. I will be the first to admit that I am racist because I have been indifferent.

Let’s break this down a little further.  When you think of racism, you typically think of the most blatantly obvious forms, so let me clarify that further. I am not a member of the KKK, or any white supremacy groups. I do not actively participate in activities condoned by these groups and I do not speak derogatory terms about people of color in an attempt to establish my superiority over them. I do not believe in segregation and I certainly would never allow for anyone to implement Jim Crow laws in this country once again.  Racism is very much alive in this country, and I think that if you continue to deny that existence, you are in for a huge awakening over the next four years (but that requires you to pay attention).

The indifference of Racism is something Caucasian individuals struggle with. You and I, we don’t have to worry about being targeted by police because of the color of our skin. We don’t have to worry about access to education and we know we will be able to find work when we graduate from school, because we have the privilege to attend school in the first place (many of us with the financial benefit to ensure an excellent education, myself included). We are privileged to make decisions in this country that we know will not have any impact on us. Most of us do not live in poor neighborhoods and typically do not interact with those who do.

Try an experiment. Look around where you spend most of your time with your family; is there diversity in your neighborhood? How many black families reside there? How many Latinos? Asians? What about the grocery store? Are you in a well off area of town? How many times have you walked in to Wal-Mart and made judgments on people because you are likely better off than them (we are all guilty here, people of Wal-mart, myself included).  When you walk down the street, if you see a police car, do you get scared? Do you worry for your safety? What about if you see an older beat up car with expensive rims, what do you think to yourself or say to others around you? If you say you wouldn’t say anything you need to pay attention. Even I must admit that when I see someone driving in a vehicle of that description I think, “that guy is possibly a thug or a drug dealer”.  When you see a homeless person on the corner, do you think to yourself “get a job you lazy bum”?

Indifference is that I know when I get pulled over; I do not have to worry about getting shot. Indifference is that I know that when I walk down the street, I am not viewed as suspicious. Indifference is that I know when I am shopping in the mall, store employees will not eye me every second to see if I’m going to steal something. 

Indifference is that I know that I can drive a luxury car around town and people will think I drive it because I earned it. 

Indifference is like putting blinders on racism and I’m here to tell you, LETS ALL TAKE THEM OFF. 

Stop being indifferent and start being more involved. Speak up and do not remain silent. If you finish reading this and feel that I am specifically targeting you and that I am a hypocrite. Go back and re-read for your sake. I am calling myself out too. I, like all of you, am just as guilty of these things. I am just choosing to acknowledge the elephant in the room. I want to be better; I want things to be better. If that means I have to be the first to come out and admit my faults, so be it.

I don’t typically post bible passages, because most often they get thrown at me in a way to tell me to be more Christian, but I can’t help but think about the book of Matthew Chapter 25:31-40.

We should all do some self-reflection today.

MD Anderson

You want to talk about the epitome of a horrible day?

Imagine you are sitting in the waiting room at MD Anderson in Houston, Texas (where you are looking to get a second opinion on your diagnosis of a recurrence of a past Brain Tumor) and subsequently watching the election results blare across the television with the headline "In his first 100 days: Repealing the Affordable Care Act". For many, understanding the emotion in that type of situation is impossible because, lets face it....You think, "I'm healthy, this won't affect me". You need to hear me out please.

Some of my friends and many people around the country voted for Trump based on this campaign promise because they were frankly, fed up with the rising premiums on their insurance and they didn't feel that Obamacare was working well for them. I get that. Insurance is out of control, and something needs to be done about it. You have a right to be fed up, but you should also take into consideration something else. 20 million people have gained insurance since the initiation of the ACA and it has done away with Insurance companies putting caps on the insured because their care costs too much. It prevents insurance companies from discriminating against people because of pre-existing conditions which, was my saving grace. You see, I will require lifetime follow up care for my medical condition that has left me battling intractable epilepsy and in need of frequent MRIs to catch disease progression. Brain cancer for most, is not a one and done like some cancers. The outlook is often grim and many fellow survivors have battled recurrences 2, 3, 4 sometimes even 5 times during their lifetime.

So, back to sitting in that waiting room watching that television... As the words "Repeal Obamacare" scroll across the screen, you feel the nausea rising and the uncontrollable urge to panic. You see, repealing Obamacare means that millions of individuals out there like you, are at risk of being dropped by their current insurance companies because you are too expensive to insure.

Some have said, just get a new insurance company. It doesn't necessarily work that way (and that's a conversation for another day).

Repealing Obamacare opens me up to a level of insurance discrimination that we haven't seen since the ACA was enacted back in 2010. So naturally, my level of anger and frustration was at an all time high. What's worse? Many of the people I talked to who voted for Trump based on that fact alone, didn't even consider the outcome on people they know and love. I know many of you have or have had a family member who was ill with Cancer, or some other form of debilitating illness that required extensive medical care and follow up. How would you feel knowing that you just opened the path for those people to no longer be able to afford their medical care. Would you be happy? Would you be sad? Would you be angry that you might have to watch your cancer stricken family member suffer endlessly because they can no longer afford treatment? What would you do about it?

Some have told me, Pray. Prayer is important and something easy to do, but if you can tell me you would be willing to place all your chips on the slim chance of a miracle, you would be kidding yourself. I once encountered a man who had broken his leg so severely that the fracture had been displaced causing an obvious deformity. Instead of going to the emergency room where his leg could have been reset and casted and he would have made a full recovery, he chose to pray because he believed Jesus would heal him without intervention. Years later, his leg is permanently disfigured and he is unable to walk and relies on a motorized scooter to navigate his community. I believe in prayer, I pray regularly. I pray for god to give me strength so that I am able to persevere on the hardest days I face. I pray for peace and understanding for myself and for those around me. I do not pray for god to cure me. Instead, I pray for God to guide me to find new ways to address my condition and guide me in educating myself in all possible means of recovery and healing.  So when I am facing not only the possibility of having Cancer for a second time and then on top of that, the possibility of losing my insurance? I'm not going to be to keen on suggestions made by others. As a cancer survivor, people say things that are insulting and rude (even when they don't intend for it to be). You get treated differently because of it, and it has resulted in me losing quite a few friendships over the past two years. These are things that I have come to terms with.

Facing a second round of this diagnosis means that I am not denying my emotions or hiding them because frankly, I NEED to grieve, and I NEED to be angry. I NEED to scream this is not fair at the top of my lungs, and I certainly need to feel down.

As I sit here writing this I am convinced that I am winding down the bargaining stage of grief. I am hoping that this man with no political experience who is neither Republican nor Democrat will somehow see the light and have an incredible change of heart. I am hoping that this man is just as big of a Con as I saw him to be on the campaign trail (after all, he ran a brilliant campaign catering to a group of individuals who feel forgotten). I am hoping for empty campaign promises.

The second opinion is inconclusive on tumor recurrence. I am going to be returning to MD Anderson to undergo an MR with spect and profusion to determine if it tumor or tissue necrosis. I am hoping for the latter. If it is tumor, it is likely low-grade and I might be a candidate for something called Laser Interstitial Thermal Therapy (LITT). It is a minimally invasive surgical procedure that involves inserting a catheter into the area involved and slowly heating up the tumor tissue to create cellular apoptosis or programmed cell death. Jeramy and I will still be moving to Denver, Colorado on the 5th of December and I still plan to continue with additional treatment options at that time. I have spoken with quite a few people who have been able to get their seizure activity under control and get off some of their meds using cannabis oil, which has allowed them better quality of life and the ability to work without fear.

We're moving! (again)

I have begun a new journey once again this week.

As some of you are aware, I did not have a good follow up with my oncologist last month regarding my most recent MRI. There were some noticeable changes in my MRI that could not be distinguished between post-treatment effects and/or tumor growth. These changes prompted my oncologist to recommend I look into joining a trial for recurrent anaplastic astrocytoma in people who have previously undergone surgery, temodar, and radiation treatment. The study, is funded by Orbus Therapeutics (A biopharmaceutical company). The STELLAR study, involves the use of an experimental drug called Eflornithine, which is given in conjunction with lomustine to inhibit the growth of certain enzymes within the cancer cells. Now, the fact that he jumped right into this conversation set off a few red flags for me, but I was willing to hear him out. Jeramy and I began with an onslaught of questions almost immediately. The first being, does this involve chemotherapy? The doctor immediately responded, no, and began to explain what specifically Eflornithine was. I asked him to explain everything I could think of, particularly....what is the quality of life of the patient's on this trial? What kind of success rate are we looking at with this treatment IF I receive the experimental drug? Can this cure me (and not in your 5 year survival rate BS term, but in the actual cure that will allow me to live until I'm 80 or 90). 

With each question, I became more and more suspicious of this doctor's motivations. I started asking myself, if the growth is too small for me to be a surgical candidate, why are we already jumping into these majorly aggressive treatment techniques? This isn't adding up for me. I began to ask more questions regarding the study, to which, ultimately, the Oncologist did not have any more information about. The information I gained from him regarding the study, is that they weren't looking to reverse tumor growth, just stop it with the experimental drug. Furthermore, the treatment lasts for 1 year and there is only a 50% chance you will receive the experimental drug. Every one in the study, will, however, receive Chemotherapy. The other thing about the study included that the treatment wasn't a cure and that it basically involved me likely having to be on this treatment to control tumor growth for the rest of my life. Also, it did not change survival outcomes in the short term and not enough information was available regarding long term outcomes (which is ultimately what the study aims to analyze). Here is the link to the drug company website if you are interested in reading more about the STELLAR study. http://www.orbustherapeutics.com

When we left the Oncologists office, naturally I was in complete panic mode. My Oncologist knew that I was not interested in participating in chemotherapy if it can be avoided, and I absolutely refuse to do radiation again. Despite these wishes, he chose to push the chemo route anyway. It made me livid. So much so, that I decided to look into the Oncologist a little more. Turns out, he's big into getting his name on research related to Brain Tumors and treatment. Now, don't get me wrong. He's a damn good Doctor. He's had extensive training and has been named one of the top doctors in America according to his site bio. His focus has been on researching treatments for brain tumors specifically, so the guy knows his stuff, no doubt. 

Keep in mind that this is the second time I am facing this type of news and that I have already been through treatments that cost upwards of 50-60,000 US. My experience over the past two years has been that conventional medicine has brought me virtually no quality of life, but has actually taken it away. It is not the "gold standard" they hype it to be and I'll be damned if I jump into it again without much thought and consideration for alternatives. Now, I know some of you who have extensive medical backgrounds, and you probably think I'm crazy. My only comment to you, is that I hope you never get Brain Cancer; or any other cancer for that matter...but if you do find yourself with a Brain Tumor, ONLY then can you comment on my choices and decisions. Until that time I ask politely that you keep your mouth shut, because YOU are not the one making these decisions and facing these realities. If that offends you, I encourage you to stop reading my blog because everything I do from here on out, will likely go against everything you believe to be correct. 

So, faced with this decision, I have chosen to inquire a second opinion from MD Anderson in Houston and then Jeramy and I will be relocating to the Denver, Colorado area in December to seek out alternative treatment options for this possible recurrence. I say possible, because the MRI report mentions that they can't tell if it is tumor or post-treatment changes and so I want MD Anderson to weigh in. I have spoken with a fellow brain tumor survivor who states that the same thing happened to him and it turned out to be nothing, but did bump his MRI schedule back up to every 3 months. He is currently 2-3 weeks into a 90 day treatment for Brain tumors using a type of Rick Simpson Oil, which is made from the marijuana plant. The treatment involves working up to ingesting 1 gram of a 1:1 ratio of CBD/THC a day over a 90 day time frame, for a total of 60 grams of the mixture. I have read countless testimonials on this. They are mostly using it to treat Glioblastomas, but have seen success in all types of gliomas at this time. They have even discovered that using this in conjunction with chemotherapy helps the chemotherapy better target cancer cells and helps to protect healthy cells. The best thing about it? Less side effects from chemo. 

If you would like to know more, I encourage you to research into this yourself and I would be happy to point you in the right direction. 

As it stands, I will likely put out another blog post after my visit to MD Anderson on 11/10/2016 with any additional or updated information.