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

Sort this out . . .

Okay, so those who read this blog know that a clinical trial testing my current drug along with a second chemo drug is finally approved and ready to start bringing testees in to begin. Did I spell that right? Or is it testes? Well, it is true that we who volunteer might be nuts. Anyway, 10 days ago I learned the trial is officially open.

Next they asked for my most recent ct scan report (from late March), and next day they wanted the disc itself. Wait a few days . . . now they wanted my latest bloodwork. Wait a few days . . . I called today and the head research nurse quickly called me back. 1st she said I do not have papillary kidney cancer. i reminded her that three pathologists including theirs have agreed it is papillary. Then she found the correct patient folder and agreed. Then she said that first they want me to come to Bethesda for a Kidney biopsy.

Kidney biopsy? 15 months ago I had that awful lung biopsy to test the nodules that metastasized from my kidney tumor. They cut three chunks out of my lungs because the kidney "is a bleeder". So now the NIH wants to what, verify that what morphed to the lungs is the same as what it morphed from? I don't f'in know.

So, I asked about scheduling and learned that after the long weekend she will figure that out with the biopsy specialist. Supposedly I will know by end of the week. After talking with her (I was gracious) I did not get into an accepting patience mode. i spun for a while. 2nd guessing, what iffing and catastrophizing. In my head I know it will be alright, I can trust God, and I need not worry.

The hard part now, is getting that comfort 13 inches from my head to my heart. Peace, kindness, gratitude, patient, open minded, honoring, serene surrender. It is almost meditative just typing those words.

Our annual recovery convention is this weekend - @ 1200 addicts gathering for fun, food, speakers, workshops, dancing, comedy show and . . . no drugs. 1200 people arm in arm, saying the Serenity Prayer - the room resonates. Saturday night after the dinner, we do a clean time countdown. We start at probably 35 years clean, and a couple might stand up. Then 33, 32, 31, and so on, with higher numbers of addicts standing up as the years get fewer. We will probably have approaching 100 members this year standing for over 20 years clean. By the time we get to my 16 years, I am one of many and the clapping and yelling gets louder. Then as the years and then months go down the chanting starts, "Keep coming back". When we get to just days clean, 30, 29, 28, so on, the room is roaring with Spirit filled memories each of us has of being newly clean. The miracle of each of us multiplied by over a thousand hope to die drug addicts who no longer have to live that way.

I heard a guy share at a meeting last week about being six years clean now, but still feeling the overwhelming love/fear/excitement/joy/bewilderment of being the one addict in that whole convention hall, at that dinner, who had just ONE day clean. He cried telling us about it now, saying he never before felt as cared for and loved as he did that night six years ago. The heady atmosphere of gratitude, the pulsating Power in that room, far greater than the disease we call addiction. It shoots warmth to the depths of my soul and comes back out as shivers of awe up my spine. I know you can feel it too, right now. I go back every year wanting more. Still and addict, wanting more of living clean. What cancer?
Bill

Trial is open

Wow! Finally the drug trial at the NIH in Bethesda, MD is open. Jacki and I have been waiting with bated breath for what seems six months but has been only 3. The wait has been a bit tortuous, because this trial at least gives a sense of doing SOMETHING.

I can live my life one day at a time, trust God, hope and believe and get into gratitude for the life I already enjoy. AND, the bottom line about this cancer is it is terminal without some new treatment. No matter how spiritual I can be most of the time, along with all the positive stuff is the sense of watching myself wither.

I just found out minutes ago the trial is open which I think means they can start bringing patients on board. They asked by e-mail for my most recent scan and report, and I emailed the report about 10 minutes afyter their message. Johnny on the spot, early bird gets the worm, good boy scout - I am ready. Let's get the show on the road. Do I sound excited?
Bill

Elephant in my blog living room

I see 106 posts on my blog since its beginning a year or so ago. Always, a huge piece of my picture I have left out. Why? Fear. It is unspoken but with a hand full of those in my herd. I fear being judged. i fear the stigma. I fear feeling less than. My excuse is often that I do not want newcomers around my twelve step program to see a pill as a quick fix for this elephant. Get into the 12 steps first. The real reason for not telling is the maybe only self imposed stigma.

I have chronic depression. With the steps and later the outside help we call therapy, the truth unfolded. I can see cycles of depression all the way back to adolescence. My annual Social security reports about income and how much SS we can receive if we retire - well, they show a history of major ups a downs in income. From 175K to zero. One year 25K and two years later 80K.

When first i was diagnosed with depression, I had been largely unable to leave the house for near a year. It felt like slogging through mud - everyday. Not suicidal, but mental and physical lethargy. Everyday. Income was zero that year. I seldom answered the phone nor the door. I lived alone and stayed alone - isolation. Looking back It is difficult to believe how deeply the heaviness glommed onto my entire being.

I saw my GP in about 2002, described what I felt and he suggested Paxil, an antidepressant. I had known for years that something was wrong, but denial is not a river in Egypt. I did not want to have depression and I had even ridiculed those who had it. I once made fun of a guy who talked about his suffering, and a couple months later he was dead. Okay, I did not cause his death, but perhaps I threw another rock into the bag that weighed him down. I now feel empathy and sorrow thinking of him.

The Paxil made a difference immediately. I got my life back. 9 months or a year later, I figured I did need it anymore and tapered down to zero. For a few months I was okay but then . . . the mud gradually got thicker and the glom enveloped me again within just 4 or 5 months. Nothing in particular triggered the spiral. It just settled around me.

I told my doc and he referred me to a professional in appropriate therapy. We tried Paxil then most all the other medicines. Wean on, not work, wean off then try something different. For a couple years those on and off cycles continued until, finally, we found the right one for me. Did you know that the usual antidepressants work for only about 50 or 60% of patients?

The stigma is here - I know you feel it too. Why the stigma? Treating any other part of the human body for whatever ailment is what we do. That is okay and even required. But for this and only this part of the body, this organ we call brain, the stigma applies. My cancer has no stigma but my depression even I judge.

Now I have both, well actually 3 diseases: cancer, depression, and addiction. They may well exacerbate each other. Much evidence suggests that drug use is a form of self medication for depression. I do not understand the interrelationships, but I know I is one of all the above.

Now. the Tarceva daily poison we call chemo, and my depression medicine seem to interact in counter active ways. What if the Tarceva can work better with less or none of the other pills. Only one way to find out. Wish me luck . . . no, pray for me. Thanks.
Bill

Run the gamut to gratitude

Everyday I run the gamut through sad and mad, scared and worried, regret, grief and sometimes moments of despair. Almost always however, those tough emotions wind up leading to gratitude. Gratitude for the wondrous life I have experienced since getting clean and into recovery over 16 years ago. Gratitude for the strong foundation of morals and values I was given growing up, lost during active addiction, but still there at getting clean. Gratitude for grace, unearned gifts, appreciated only as my recovery spurred spiritual awakenings and growth. I have learned to notice the miraculous world where within I live.

The gifts I value most are the relationships with people near and distant from my little space. Last night at a meeting I heard the speaker talk of her herd. Like elephants the herd gathers around the injured, sick, wounded, old and young. We lean on each other, knowing now that our very existence is meant to be a part of rather than apart from. The herd I am part of has gathered around so many others before and now for over a year, they just will not leave me alone. I mean that endearingly; I am never really alone because I am in the presence of the God I understand. The people of my herd come close reminding me of that unending unbroken presence. Some of the "elephants" I thought I did not know have gathered round - overwhelming comfort and love.

What beauty stands next to me in the herd. My wondrous wife Jacki. She carries this load as much or more than I yet she stands tall and walks through. Sometimes she seems to drag me along. Often she inspires me to wash through the emotional wringer that comes magnified by cancer with so many little life bumps. I believe that if the tables were turned I would stand next to her but that's not the shoe on my foot. I get to see more of the depth of her goodness, not just with me, but with all in her path. I get to see more of the little girl openly experiencing her gamut of emotions. In-to-me-you-see. I love her beyond what seemed my capacity to love.

My daughter Kate. This love, of a different bent, comes so close to the power with Jacki. Kate is in my bones and flows through my veins. She is here for me and walks through what I am so sad she must. Closer we are than when she was 5 or 6. I stole time from her in the last few years before recovery. Then we began to grow together again. But then she stole the time inadvertently turning the table. Yet, miraculously she returned from the neverland nightmare of every parent. Since then our bond has healed and now our adversity adds glue.

Family, friends, sponsor and sponsees, others near and far, including you the reader - I live within a herd.

Cancer still extracts its due everyday. Most scary, though sometimes amusing, are the altered skills of social interaction. Sometimes it hurts the other person. More readily escaping my lips are irretrievable word barbs. My sarcasm is heightened, at times shredding the flesh of interaction with others. My indirect communications are tuned into subtle controls that later leave others with the taste of insult. Oh what the hell, just say it like it is Bill - my words hurt others more often than before.
In recovery I have learned to make amends, set things right. But some days it is tough to keep up.

At times, my more awkward attempts and communicating include grasping for words that used to be readily available. I get tongue tied. I forget more than an allowance for age. Sometimes this is funny, always it is humbling, and sometimes it just plain scares me. I can be sad about missing wit.

No bicycling, no driving after noon. less energy, breathing more difficult, the nasty daily effects of taking my little white pill of poison. It does work to slow cancer's growth so it is my friend, right? I do not want to trade with those on IV chemo a couple times a week, debilitating for days. The wait for the drug trial in Bethesda with the National Institute of health - it seems tortuous and it seems like 6 months, but really has only been six weeks.

Whatever the tough parts, I think the pain is shared amongst my herd, not piled on just me or any one else. I came to recovery with the smell of an unspoken elephant in the living room. Now, I am grateful for the magnificent herd all around. Thank you!
Bill