Saturday, March 13, 2010

2 deaths in 10 days

Two deaths, one suicide by gun and the other by drug overdose (suicide?)have happened close around my space in life in the past 10 days. The first was the son of a sponsee. The second was a guy, about 30, father of a baby and married to a recently clean again member of our 12 step program. I sponsored him 5 or 6 yrs ago. Both of these events hit me hard, the 2nd like a brick wall falling.

He died in the morning and last night his wife was there, at the Friday night meeting, overwhelmed with incomprehensible grief, but surrounded by many of us who love her. Feeling like a protective father (grand father?), welling up inside me were anger, sadness, fear and gratitude - near simultaneously. Anger at the disease of addiction and the addict who refused to be pulled away from its grip. Sad because another one of us was killed by this disease that claims it isn't even a disease. Scared because it could happen to me or those closest to me. And lastly, gratitude that it was not me.

This morning I allowed myself to acknowledge that I am also pissed at those two guys who frivolously discarded that which is so precious to me. How could the MF's throw away what cancer is stealing away from me and so many others? How could they devastate so many people in their lives? I am angry, and I don't even want to find empathy, compassion nor forgiveness. Not yet! Maybe someday.

In present day United States of America, yearly suicides outnumber homicides.

Maybe I have not told you yet that my trip to Bethesda for in depth evaluation and study, has been pushed back into late April or early May. I want it RIGHT NOW!

Did I mention that I am angry about 2 deaths in 10 days?
Bill

Saturday, March 6, 2010

How are you doing?

The question and its variants are still difficult to answer. 1st of all, thank you for asking. When you ask, I must ask myself a couple questions.

1.Do you really want to know and if so, how much info do you want.
2.Do I want to tell you and if so how much? I am aware of minutiae but it seems self indulgent to go there and so I don't.

I said above, 1st of all thank you for asking. However sometimes I am so wrapped up in my stuff that I don't even notice or remember to ask about you, little or small stuff. I think about it later and regret not asking about you and yours. Sometimes it seems almost inappropriate when you ask me about my routine regimen of cancer chemo.

Today I attended the marriage of one of my dearest friends, a man I respect, admire and love. I wanted to talk about the event, the man, the woman and the joy of watching and participating. They actively love each other and being there was an experience to treasure and an experience out of my self ... And then I'd be asked the question.

A few days ago, my friend's son committed suicide. In some small way I have been helpful. I have not asked, "How are you doing." "Talk to me" seems to help. I am so sorry you are having to go through this, was helpful once or twice. I'd like to know how you have gotten through today, is a pretty good support statement. Being there for someone so close, at least in my thoughts, prayers and heart to me means actively reaching out and listening for their pain, suffering, stunned hours. Closing my eyes on the phone helps me listen better.

The suicide and the marriage - in a way side by side in my collection of moments. Both huge for them and for me taking me out of my own head . . . away from cancer. My cancer pales. And then someone asks . . . the question. Perhaps Sometimes I may be doing you a favor by forgetting to ask "How are you doing?", allowing you to, for a few more moments be something other self centered. Instead thinking about someone else' pain or joy or big moment in their life. I think then there is room for compassion.

And, I am glad you asked.
Bill

Thursday, March 4, 2010

Big deals

I am less sure than ever what defines a big deal. On a one to hundred scale, what in life is in the upper 25?

16 years in 12 step recovery has always told me being clean is numero uno because if I am clean then I have a chance to deal with everything else. One of my favorite t-shirts said "Don't sweat the small stuff" and the back said, "It's all small stuff." Maybe the thing about being clean is big, and the saying it's all small stuff, are helpful to put things into perspective. However, it seems to me that experiences and events that comprise a big deal are sprinkled and or dumped or result numerous times in each of our lives.

My daughter's birth was huge and subsequent growth stages have been big. My marriage to Jacki certainly dwarfs those previous. My day to day life with her is cumulatively big. My first kiss in 8th grade; starting 5 in Jr High basketball, and getting cut from the team 2 years later. All big deals to me.

My Dad's death 17 years ago was devastatingly large even though numbed by drugs. My Mom's near death bouts with lymphoma have been hugely tortuous. My sister's death for me was a deeply felt loss of an integral part of my being - she was special! Me getting clean indeed was and is a BIG deal. My cancer has so far had the most success at stealing my quality of life. Those are big to me.

Big to all of you has varying examples and events, some painful and some happy. Losing a home for your family is at least "BIG". You have just as many adjectives to communicate "big" as I do - big, large, huge, dwarfs, devastating, tortuous, peak, high point, low point - our language falls short of accuracy. Even our compassion can fall short as mine has done this very day. My friend's youngest son committed suicide yesterday. Gun to his head in his room.

That is a big deal.

I have a tendency to minimize or maximize or even dismiss your pain or happiness. "My case is worse or better than your case". I can judge and assess the worth and impact of your happiness or sadness, your joy or pain. How quickly I can dismiss or forget your hurt even as I defend or even wallow in my own right to be noticed, remembered and sympathized. My happiness is huge and you should agree even as I ignore yours. In recovery we call that self centered. At any given moment, chances are I am thinking about me and I am thinking my stuff is a bigger deal than yours.

In my better moments, I remember that I am "Bill Banana, One of the Bunch". We are all connected, what touches me touches you. At my best I notice life - yours and mine, the pain and joy, the hurt and comfort, the effort and accomplishment. Pain is pain and joy is joy and I do not to place a score by yours nor mine. Seems to me that when I notice and acknowledge and feel your life, seeing the similarities not the differences, feeling in me what life is to you, then I am acting love. Acting Love. Acting, not just saying. It is what I say I want. I need your example and help from my God to act that way and I seek more.

With love I see my friend, who lost her son today, and my big deals pale. I see you, I notice your life, and give you my love and my prayers.
Bill

Monday, March 1, 2010

Long time, no write . . .

It has been just about a year since a specific dianosis was reached - metastasized papillary renal cell carcinoma, PRCC. I am not sure it is the pill form chemo drug Tarceva, or what, but the largest growth of any of my tumors is about one centimeter. I still feel nothing from the kidney tumor, but my breathing is impacted some by the nodules in my lungs. I started the medicine last March, but the centimeter of growth is measured frome the first CT scan January 2009.

The year marks a turning point for how I think about and feel about having this unusual and "incurable" form of cancer. What does my doctor really know? What does he not know? Early on, in some degree of shock, Jacki and I both took him at his word to be a a ntion wide expert in PRCC. Maybe he is. I know that he did not follow up on one drug trial I pointed him toward a year ago. In his practice, his patient times were adjusted from 20 min to 15 min. I know he did not follow up on a promised graph of tumor change over the months.

We have concluded that he may well be an "expert" in his field, but he still knows very little about inhibiting papillary cell growth. Nobody knows much about it. I want to know what they know AND what they do not know!!! I have finally defined my necessary role as Project Manager of my own treatment.

So, you helped me find a listserve of fellow PRCC patients. Through them I learned of a number of oncologists around the country who are or have worked with PRCC. Of those, much of the small amout of research on PRCC is done at the National Institute of Health. Their department of Cancer studies is deep into papillary study and trial interventions.

I must point out to our conservative party of NO! citizens that this place is an example of socialized healthcare. They are mostly government funded. No sanctified capitalistic pharmaceutical company has nor will invest much in research about PRCC nor most other unusual forms of cancer. No money in it.

I have cultivated an informed relationship with the head nurse of the department and I now have the cell number of one of the doctors. They want me to go to them in Bethesda, Maryland for a complete physical workup, perhaps to the genetic level. Then they will layout the drug trial pros and cons (additional side effects?) to Jacki and me to help us decide to be or not to be part of the trial. This stage 2drug trial uses my current drug, Tarceva, combined with another drug that kind of hits my cancer from a different angle. Sort of a double whammy approach that lets me be a bit more hopeful.

The doc I have spoken with said the combination looks very promising. In April I go to Bethesda for a few days of evaluation. They pay airfare and hotel but we pay Jacki's air. I am excited. If Jacki and I decide to do the trial it will require more trips to Bethesda.

That uplifting hopeful development the balance out with feeling angry a few times over the next few days. During a brisk long frustrated walk one night I had an overwhelming urge to throw my cell phone though a couple plate glass windows and then run like a scared rabbit. Then I realized my phone would be evidence inside the plate glass window -- uh ohh. I am typically better at stuffing anger than appropriately expressing this very human response to pain. Of course, stuffing anger squeezes out rage of coagulates inside into depression So vehemently talking about it and just thinking of throwing my phone or slashing my doctor's tires is progress for me and a bit more honest than "oh, I'm a little disappointed."

The anger was about yet another quality of life loss. We had to cancel a first time to Hawaii long planned trip. No biking, no skiing, no job, less freedom, spongy brain, cloudy thinking, memory loss. Cadillac problems all, but cancer is a thief and I am pissed off enough to fight.

Last night I became aware that in talking with others and particularly Jacki, I was focusing on some side benefits of going to Bethesda. For example I love the possibility of walking the monument filled Capitol Mall in nearby DC. I get choked up about getting to visit The Wall. Long ago I had an overwhelming experience visiting Philadelphia and the Liberty Bell and Independence Hall. I want it again, perhaps 10 fold in DC.

What I was not talking about is the underbelly of doing the trial. What if it does not work? How bad are the side effects? How much will I be away from friends and family? Even if I still die from PRCC, will I at least have helped the next guy? However, regardless of those fears, at least I will feel like I am doing something! Something please!!

Thanks for listening!
Bill