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.