NIH - Bethesda, MD - DC

We arrived Monday nite late - given the 3 hour time difference, it wass really late. Checked into this funky little hotel near NIH with a shuttle that runs to and from. The hotel? Very nice architecture, nicely furnished, good bed and shower. Both drains drain. Good sheets. And then we get to the cost cutting measures: thin towels, motel six soap, no hot water at night. A bit shaky elevator; view of the building next door. Of course, it costs about 1/3 as much as the nicer places. Some good, some bad, inexpensive, we'll take it.

I'd guess within a mile there are 15 different ethnic restaurants. Two miles away we found my favorite salad bar ever. Organic, vegan, or chicken/tuna. Did you know falafel is a great source of protein?

We had Tuesday to get the lay of the land and went to the Viet nam Memorial Wall, and the Lincoln monument. I cannot describe the welling up of a feeling of what? Patriotism. A proud sense of our own history as well as the sacrifices made. Whatever political stance or sense of right and wrong, these monuments stand for something gut level important. As a nation we have not always done the right thing, but our soldiers have died for our ability to try and get it right. I was amazed at how standing in the presence of so much history overwhelmed me.

NIH. National Institute of health. This is a government run center for medical research. Already we have me people with numerous types of cancer cells destructively wandering around in our bodies. The chins are up I think because we all know we are doing something good, perhaps for ourselves, but for sure for the next guy. The people who work at NIH: nurses, doctors, research statisticians, cafeteria, drivers, security, on and on, all seem full of a positive attitude of doing something good. We see medical personnel, some of the best in their field, unfettered by insurance companies, and allowed to put patient care first. How much money they make set aside because they get to do what they trained to do. I am inspired.

Apparently they find my case quite interesting. It all boils down to a tiny little type of cancerous cell - slight possibility it is not papillary, but if not then a new twist on what has been IDed before. They took a couple small samples of my kidney tumor today, to be analyzed by a super pathologist like House, but differfent specialty, and with people skills.In ten days or so I will have that info and a team of kidney cancer research doctors will have recommendation about where my case fits in their research and drug trials picture. Hopefully another thread in a blanket f solutions.
Bill

Getting ready to go . . . Facebook in the way

I have a sponsee writing on diversion, hocus pocus change the focus. It is one method of steering others and myself away from what is too close, too vulnerable, too human. It is a way to keep away even those who I would prefer to draw in close. Sure, sometimes diversion skills are an asset for protecting and filtering who gets near. But when, as for me today, it functions to avoid or deny and hide what is going on inside myself, then it is a liability.

Facebook has grabbed my all too willing focus. Started my page a couple days ago, gave it an hour yesterday, and I don't know nor want to admit how long today. Found a couple old friends I miss and another I do not. One ex-wife. Curiosity, and I wish her well. That one was tough on us both, but great practice for the Wonder I have the past few years with Jacki. Maybe facebook is a way to communicate with acquaintances, but do I want to invest my box of energy each day in chatter on my "wall"? So far the Facebook thing is on shaky ground for me. The account is closeable but it sucks me in. And it functioned today to divert me away from slow rolling wave of turmoil about our trip to NIH in a few days.

Google Earth can show me what the facility looks like from a couple different views. I can see our nearby hotel and the coffee bar across the street. I found a horizontal view of "The Wall". And I can scope out the Metro public transit for getting around DC. The logistics of our travel are daunting - it is not my strong point. but I can do it. It is all new and I have questions unanswerable: How does getting around in DC fit with being chemo mushy each afternoon? I really want to visit our Capitol, and I REALLY want to go to the Wall. All of this will work out fine. Trying to nail it all from Arizona, serves mostly as another diversion away from the reason we are going.

I am not officially in the drug trial yet. I thought I was in already but hmmmm, I was wrong. The researchers want to biopsy my kidney tumor, just the stick a needle into my kidney method. No major invasive thing like last year cutting out some lung tissue. For a year and a half I have believed I have terminal mPRCC, papillary renal cell carcinoma metastasized into my lungs. Now, for the research of a new drug, they must directly biopsy my kidney tumor to make scientifically certain my version of kidney cancer is papillary. Remember, papillary is what makes it a bit rare and unstoppable.

This "gotta make sure biopsy' has me more than a little anxious. Scared, angry, nervous, consumed. What if they diagnosed wrong 18 months ago? What if it is papillary but I still don't get in the drug trial? What if, what if, what if, coulda woulda shouda. Where is my trust God, clean house and do the next right thing? I want to know right now! I hate being in the dark.

I can say all the right things and get all intellectual about it, but the truth is that I have been hiding on Facebook. I don't want to feel this stuff. A good addict would go get an eight-ball or two, but nooooooooo. I am a Recovering addict sitting here trying to get at the truth which I am so good at stuffing. I want the peace and serenity that comes from facing it, leaning into it and knowing that my God is as close as the breath at my cheek. Crying is still okay - can you see the drop?
Bill

I G T N M T

I am not in charge of scheduling. I do not have control of my own calendar. Swim up river, or go with the flow - a daily choice. Maybe some of you have noticed, I am more than a wee bit hard headed. And, as you can see, I am willing these days to own that I am readily impatient and want what I want when I want it. Let's get on the plane to Bethesda right now!!!

For the past few years, I have done an in depth, very personal (though quite scientific I assure you) study of the word 'cordial'.
CORDIAL:
1. (1) affable, amiable, cordial, genial
(diffusing warmth and friendliness; "an affable smile"; "an amiable gathering"; "cordial relations"; "a cordial greeting"; "a genial host")
2. cordial
(politely warm and friendly; "a cordial handshake")
Most who know me recognize the first definition as a blueprint of me in a crowd. It is easy for me to circulate, smile, hug and chat before bouncing to the next party.

However, the 2nd and subtly different definition is more difficult for me. This version of cordial I utilize for the phone calls with tech support, billing people or the merchandise return counter at Best Buy. Speaking well of my growth in recovery (or at least in age), this 'cordial' replaces verbal assaults on some worker bee doing as their boss and bosses" boss told them to do. Even tougher were the collections people I fended off in bygone days. Of course back then I was not concerned with being cordial.

So, all that leads me to I G T N M T. In God's Time not My Time. Finally getting scheduled to go to Bethesda, MD, home of the National Institute of Health, National Cancer Institute chapter, has been a cordiality trial. It is a government entity after all. I sailed through with relative ease dealing with the Chief Nurses who basically handle the implementation of the drug trial. But then, at the end of the scheduling process, we learned that I was not in their system. My name nor my records. And she warned, "We can't push the admin office." Her voice of past experience I am sure. Cordial Bill, cordial.

At last, the green light was given, the date was set and, she said "I will send this to our travel agent to arrange the flight". All right! Being cordial will be effortless with a travel agent, they are all friendly and helpful right? And she was, right up to where I said Jacki is coming also and we want on the same flight. I could hear and feel the weather change. A challenge, out of the routine, not part of her plan. She really expected flying on separate jets would be fine. Now the anti-cordial clouds arose on my end. My brain raced with retorts and cuts and of course the penultimate "let me talk to your supervisor!" which comes only before slamming the phone down in a show of POWER!!!

Happily instead all stayed calm in Mudville that day. Casey did not strike out - I was cordial. Having landed on that word 'cordial' only a couple years ago, the practice since has paid off. Jacki and I are on the same flight, staying a few days past the agent's preconceived notion, flying out of Phoenix on June 21st and returning June 27th. See the Capitol, visit "The Wall", get a meeting list for my collection and maybe eat DC sushi. Oh yeah, and begin the on site process of being in the drug trial. Thank God.
Bill