Transparency

Last night, Danny went with his college buddies to bottle their personally crafted beer at a local brewery. Left to my own devices, I whitened my teeth, mudded my face, and ate a pound of strawberries. I don't need to say much about the latter choice, other than it was excessive and thirty minutes later, I immensely regretted my over consumption.

I'm anxious for the MRI tomorrow morning. I realize that what is done is done, that whatever we see is what we see, but I can't help but be nervous. I wish I could just let it all roll off my back, and live my life, then show up at the hospital and finally worry. There's no point in stressing about the results, and yet, it's impossible to avoid it.

In my semi-stressed state, I've been reading a couple of books written by doctors. One was the book titled, The Anatomy of Hope, and then the most recent is Routine Miracles. Both are giving me a better perspective of a doctor's position in patient care. It has prompted me to reorganize my appointment. Let me expand.

I've decided that I need to discuss my alternative treatment with my oncologist. Not in the glossed over fashion that we've attempted in the past, which has caused us to be brushed off. I need to get more in depth and I believe that since we've always met with my oncologist as a group, my parents, Danny, and I, our large presence limits intimacy. So, tomorrow, Danny and I will meet privately with my oncologist and explain everything that we've been doing, starting from the beginning.

We will explain that we've been doing a researched based protocol. I'm going to tell him that the research has been conducted in the Bioengineering Department right here at the University of Washington. I will tell him that we're in contact with the researchers, and that we have a friend who has already eradicated her tumor with a combination of said treatment. This friend had the same exact type of brain tumor as mine, a stage 2 infiltrated/diffuse astrocytoma, even down to the lack of co-deletion of p19-1q (he will recognize the importance of that statement).

I'm going to tell my oncologist that this protocol is not invasive, it's cheap, and relatively speaking, it is without side effects. I'm going to tell the doctor that I need an oncologist that's willing to follow my situation, and understand that I am a unique case. I want someone who is on board, and excited about the progress and fortitude with which I'm going to fight this. I'm going to feel out this oncologist and see if he truly wants to see me cured with any type of treatment, or if he is more interested in western medicine's standard of care. My case is definitely out of the box, and I'm going to tell him that I'm looking for a teammate. By having this honest and open dialog, I think I will find out whether or not I will keep him on my team. It's all about how he responds to this discussion.

I'm excited and nervous to have this talk. I think it's about time I gave transparency to my doctors, but I also understand that it could go horribly wrong. It's a risk that I'm willing to take, though, it has to happen so that I can get the best care. They need to know what they're dealing with, and I need to give them the opportunity to truly help.

After Danny and I discuss my situation with my oncologist, we're going to call in my parents so that we can all review the MRI results. I feel like the first half of the meeting needs to be intimate, and private, so that the oncologist isn't overwhelmed by all of our faces, expressions, questions, etc. I want to look in my doctor's eyes and have his full attention. I am going to lay it all out on the table, and analyze his reactions. This could be an epic success or a tragic failure. Either way, in life, I'm reminded, you can't be afraid of the answers because it's the only way to move forward.

Prevailing

We have a beautiful courtyard just outside our front door. Danny and I have shared games of scrabble, cocktails in the dark with our neighbors, and on Saturday afternoon, in such a happy place, I stretched out with my new book, The Anatomy of Hope: How People Prevail in the Face of Illness. It's a perfect find, just as I'm nearing my Thursday morning MRI. Here are a few of my favorite quotes from the book:

      "It was my right to choose what I did. Even if I didn't prevail - and I didn't expect to - it was my only chance. I deeply wanted to live, so I had to fight. Then I could tell myself that I had tried, that I had done everything possible. There would be no regrets." 
      His was a libertarian mind-set, one that placed the individual squarely as the ultimate arbiter of his fate. It represented a certain form of hope - the hope to be strong enough not to yield, to have the determination and the fortitude to fight.

Another favorite....

      When we feel pain from our physical debility, that pain amplifies our sense of hopelessness; the less hopeful we feel, the fewer endorphins and enkephalins and the more CCK (important regulation factor in response to anticipatory stress) we release. The more pain we experience due to these neurochemicals, the less able we are to feel hope. 
      To break that cycle is key. It can be broken by the first spark of hope: Hope sets off a chain reaction. Hope tempers pain, and as we sense less pain, that feeling of hope expands, which further reduces pain.

One more, which happens to be my personal favorite. I wish my oncologist and his team would read this...

      We will likely discover genes that contribute to the very complex feeling we know as hope, but the circuits in the brain that stem from this feeling are not static. Rather, events in our lives modify them, and I would posit that the words spoken and the gestures made by physicians and surgeons and nurses and social workers and psychologist and psychiatrists, and family and friends, influence the synaptic connections. No one should underestimate the complexity of factors that coalesce in this biological process.

In order to succeed in healing myself, I have created an ever changing bag of tricks. Sometimes it's a walk along the lake, or a jog with a friend. Other times it's trying a new healthy dinner recipe, or a vegetable smoothie, or perhaps a micronutrient dense juice. Inspiring books, or personal stories, have also been a wonderful catalyst, changing my whole mindset and energizing me to continue the fight. It's important to find the things that inspire you; it's imperative even, to not only survive, but to thrive.