Monday, August 31, 2009

Dis ease and fear

Let me put it mildly: I feel dis ease about the CT scan this Wednesday. To put it strongly: I am scared sh**less. On Tuesday next I go over the results with my oncologist,
MICHAEL S. GORDON, M.D.

My hope is lung nodule shrinkage and/or kidney tumor shrinkage. What the heck, I hope it's all gone!

My fear is just the opposite, growth and increase. Most likely is no change at all from 3 months ago, which would be good news. The best my chemo drug, Tarceva, has done on my type of cancer cells is to slow or maybe stop the growth. With your help all along, my plan has been to set a record for the effectiveness of this drug.

I do feel great HOPE and with no exceptions, feeling hope is okay to feel. Fear? Now fear does not seem as okay to feel or talk about. Personally I get stuck on, "What really, do I have to fear?" I can only answer that question intellectually and those vague answers have no effect at all on my truth that I feel afraid. I can readily cry over that fear. Mix it with sadness and I can cut loose with a real choking up time.

Others, yes, some of you, have told me I must just have faith and believe in a miraculous cure for my cancer. What, you think fear is a lack of faith? Well, my own head tells me that sometimes, so I really do not need anymore of invalidating my unpleasant emotion. Fear is not a lack of faith. FEAR is an acronym with three explanations:

1. FEAR, f*** everything and run
2. FEAR, false evidence appearing real
3. FEAR, Face Everything and Recover

The opposite of fear is not faith, but rather courage, the courage to feel fear and walk through it anyway. By myself I am not particularly courageous. I get some of it from you, thank you very much. Even more, I get it when I ask, from my God. Courage is a spiritual principle in whatever religion or philosophy I know about. It is given by grace. For me receiving courage is most likely when I ask it to be given. I feel the fear, and I have an endless source of courage. So do you!
Bill

Sunday, August 30, 2009

"Don't need no Stinking medical care"

My father died at age 61 of a major heart attack. Just dropped dead, suddenly. After a long period of medical intervention for clogged arteries and such, he decided to go no more. No more doctors.

In the back of my head, for years, lurked that subliminal sense of inevitably becoming like my Dad. I had a sense that I too would die at around 61 of heart problems as did he and so many of my relatives. My Dad ate poorly, smoked 2+ packs a day, and exercised minimally. He was set up to have a heart attack, and then he refused to pursue the remedies available. A good family friend, at the same age and same health problem, had the procedures done, and lives to this day.

In my early 50's I stuck my head in the sand and would not seek preventive cardio evaluation. At a good friend's insistent urging I went to a specialist and had all the testing. Result was the doc telling me to "come back in a few years." I had taken no action because I did not want to hear possible bad news - I acted like my Dad did and shied from doctors.

Now, with cancer: I found out by accident and am still pursuing every medical action and suggestion. But I'll tell ya, I am really tired of seeing doctors. I am certain I have been to the doctor more this year than in my previous 56 years. I have had an ingrown toe nail for 3 months - home remedies have not kept it in abeyance. After sufficient suffering I finally saw the doc about my toe. "Don't want no more stinking doctor visits".

Two days from now I get my second CT scan in the 4 months of daily taking the little white chemo pill. Part of me does not want to go because I fear bad news going over the results with my doc a few days later. Like my Dad, I do not want to go. I do not want doctors messing with me. But I am going to do it anyway. More than wanting to skip the fear and discomfort, I want to live.

Out of fear, low self esteem, discomfort and did I mention fear, my Dad only ran the 99 yard dash for life. He died somehow not knowing or feeling the love from the hundreds who felt and expressed their loss when he left. I owe the difference between my Dad and I to my blood family, all you others who love me and to the life saving 12 step program of recovery so central to my life. My fear is far surpassed by the love and faith you and I exchange. I will suit up and show up with the doctors. My Dad never made it to where you have helped me travel. Let's keep going. Thank you!
Bill

Sunday, August 23, 2009

Headed to the woods

We are going away for a few days to a cabin in the woods near Christopher Creek, AZ at about 5900 feet elevation. 50s at night, low 80s daytime. I appreciate these little getaways with Jacki more than I can say. See you soon!
Bill

Thursday, August 20, 2009

pledge no more soap boxes

Okay so yesterday I got carried away with a somewhat controversial blog. I do stand by my two fundamental questions - I wrote my Senators asking these questions re health care reform: Will we all have the same plan you do? If not, why not?

I am writing my 4th step. A deeper version than those previous, this one approaches my inventory looking at my shortcomings and how they effect my life and those around me. For example when I act on impatience it puts down another person and pushes them away from me. Or, with impatience I can act impulsively and make poor decisions that detract from my well being and those close to me.

Cancer magnifies my tendency to act on my shortcomings. A good friend who really wants to know might ask me "how you feeling?" I can say great or fine when really I am feeling tired and down in the chops. I have then lied to someone I care about - again, distancing them from me. Sometimes the truthful answer might be"I don't know." Because I am often in some fear, anxiety or grieving, some little inconsequential thing might trigger a knee jerk reaction. Totally inappropriate and hurtful, I regret my reaction immediately. Let's call that shortcoming "snappish".

I am overly concerned with looking good. Not so much my physical appearance - well no, that is not true. I am very concerned with what you think about how I look. I am getting "moobs" (man boobs) and I pick clothing that hides them. I am older, I have cancer, I exercise less due to the tiredness side effect. You might think me weak or less a man. And I judge myself that way. For that matter, I judge you and most everyone that way. There is my judgmental shortcoming. Once again it pushes you away and pushes me down.

One shortcoming leaking out sideways tends to open the gates for a quick little rush of these critters I am calling shortcomings. All of these characteristics I try to hide and not let you know what is already obvious - I do act short, dishonest, judgmental, etc, etc.

In recovery, I have learned most if not all of these imperfections come from a place of fear. That I am less than, not enough. Fear that I will lose what I think I have or not get what I think I need. Conversely the solutions to those problems are variations of love: patience, acceptance, tolerance, kindness and compassion, etc, etc. Love is the opposite of fear and at any given moment I am either in fear or in love.

My tendency to write and focus so much on my imperfections is a shortcoming my sponsor pegged as "Talking bad to myself". I have been hard on myself for . . . well, as long as I can remember. It does not work very well. In order to focus on my negatives, I must practice arrogance - that I know better than God who created me perfectly and shows me how to align my will with his.

The God of my understanding will give me courage, patience, honesty, willingness and kindness to solve the tendency I have to act on my shortcomings. All I have to do is ask, and practice what he gives me in all my affairs. I have faith that is true.
Bill

Tuesday, August 18, 2009

Covered?

My Mother is in the hospital for yesterday's knee surgery and will go into a rehab center for follow up, safety and comfort. No way she could go home now with only her older husband. All of this healthcare is paid for by his retirement insurance and Medicare. Throw in some supplemental coverage for medication and miscellaneous, and she has the money end of health care covered. From my own experience, I know the lack of financial worries takes a big load off the healing process.

However, for me there is a cloud over health care finances down the road. IF I can keep my COBRA coverage until it must end a year from now, then there still is a six month gap in financial coverage before I am allowed to receive Medicare. We all pay for Medicare, a bit out of our pay each check over the years. However, if one becomes disabled and no longer able to work, then we cannot receive medicare coverage until two years after being officially declared disabled. COBRA for 18 months and our government overseen Medicare begins 6 months later. Who made up that rule?

Uh oh, I sure hope no health care expenses come up then from my terminal (so says the doctor) cancer or from my lower priority leukocytic lymphoma. The pills I take which might slow or less likely stop my cancer cost $100 per day or $3000 per month. My BC/BS thanks to our government overseen COBRA, is paying for all of my medical needs now until January when I must meet the $2000 deductible again.

Projecting down the road, I can expect financially crippling expenses for the 1st 6 months of 2011 before Medicare kicks in. I do not mean to whine, and I would much rather find a job, work and earn insurance coverage. I could work for 2 or 3 hours per day if it does not have to be the same 2 or 3, and not every day and if it does not require focused attention. Chemo brain does not help with that last part.

Not working is one of the toughest parts of this whole cancer ordeal. This is not how a real man lives. Where is the bacon??? But I do have lots of support and encouragement from friends, family and best of all my wife and daughter. My sponsees and some minor recovery commitments give me some sense of being useful.

Back to money. What the f*** do people whose COBRA expired do? What do people in the UNITED STATES OF AMERICA do when their resources become depleted due to the medical expense of keeping one of their children alive and able to function. How would they cover $3000 or even much more per month in medicine? Oh what the heck, sell the home, the car, the furniture. After all, healthcare is not an entitlement.

We have fire departments paid for by all of us. We have police departments paid for by all of us. We have water and sewer infrastructure paid for by all of us. Our roads are paid for by all of us. Hmmmmm, schools, stop lights . . .

According to Webster's, socialism is "collective or governmental ownership and administration of the means of production and distribution of goods." Not fire protection, police, roads, sewers nor fresh water at our faucets, schools nor stoplights are "means of production and distribution of goods." Neither is healthcare. I personally am embarassed by the lacking availability of good medical attention for 40,000,000 Americans.

To our law makers quibbling in Congress: Will we all receive the same healthcare benefits as you do? If not, why not?

I am very fortunate, and I am very aware of those equally deserving but without my resources. Thanks for listening.
Bill

Sunday, August 16, 2009

Wait and see, yeah but . . .

Wait and see. Much of this cancer journey so far has been Wait and see. A lot of waiting and not much seeing. It seems like forever since I had any measurement of how the little white pill is working - 3 months which has crawled along. I have a very full life, time flies, but the cancer part seems to crawl. The "yeah but" part? I frequently have a small cough - feels like a very small piece of food is stuck on the edge of my wind pipe. I am pretty sure it is caused by accasional serious indigestion and burping up acid, kind of burning my throat. But in the backgound is the question, "Is this the cough of the cancer growing?"

Have I gone to a doctor to get it checked out? No. Why not? 1. Fear of bad news.
2. Tired of seeing doctors. 3. "It will pass". I have an ingrown toenail which since its beginning 3 months ago gets better then worse again. Have not been to a doc for that either. Okay, I will go. For both. Soon.

It is cooler here especially at night and early morning than it has been for about 6 weeks. I could ride my bike again - no more "It's too hot" excuse. It is now 1:25am Sunday morning. I do hereby commit to get up and ride by 9am. I'll tell you about it.
Bill

Tuesday, August 11, 2009

Wow!!!

Wow, it is amazing how much a human being such as me can enjoy a weekend getaway. Jacki and I rode with two dear friends for 9 hours to another friend's property/home at 9600 feet elevation outside Telluride. Each year the nearby recovery community holds a "campvention' there - about 120 recovering drug addicts with from 35 yrs to one day clean. God's handiwork is so readily apparent in that setting - tall aspens so thick it is tough to see through. Deer, turkey, a bear and a grouse - all seen on the dirt road to the event. Consider the miracle of those 120 who, if life was fair, would be dead. Instead we were loving to each other and appreciating the setting. "On Higher Ground", a wonderfully appropriate name for the annual event.

The last day, Sunday, at 8am all 4 of us participated in a guided meditation walk to a stunning panoramic outlook - so much holding on tight with our fellows and tears shed when it ended. Seldom have I felt the presence of what I call God more deeply than those moments. A peak experience!

It is personally reassuring knowing and feeling a great sense of that same Creator also watching over me and guiding my journey through cancer. The doctors have said it is a slowly terminal version of cancer cell. To me, in my many good moments, I know it provides the hurdle that God, partly in the form of your love and prayers, is guiding me over.

I have recently watched several movies that I had already viewed more than once: Dances With Wolves; Pay it Forward; Gladiator; Saving Private Ryan and Platoon. My tears flowed much more than any previous viewing. It is the human relationships that touch me so deeply. The closeness, joy, separation and loss and new beginnings. At the end of Saving Private Ryan, years after the war, he asks at the grave of one of those who saved him, "Have I been a good Man?" My war was active addiction. I have survived it as of today for 5695 days. And most of that time I have been a very good man and I plan to make good use of my days to come. Thank you my Creator, and my fellow children for this journey. Let's enjoy it to the fullest!
Bill

Tuesday, August 4, 2009

Pen sheds light


Amazing how much just writing stuff down helps change the way I feel. 2 pretty good days since the last rather melancholy post. Sometimes I can just ignore feeling . . . ummmmmm . . . . what can I call it that conveys it to you? I don't know, but sometimes I can ignore it for a day or so and just go about a day anyway. Do it anyway.

So, more out and about, more little tasks accomplished, a little exercise, answer the phone more and make more calls. Out of my shell. Drawing a blank, so see you soon!
Bill

Sunday, August 2, 2009

Explain to myself

Hello kind readers. I am unable to explain to myself my lack of blogging for nearly a month. It has been a way for me to keep you informed and a way to get out what I feel about going through the cancer experience. My hunch is that most of you are not surprised at my difficulty doing the latter. Being able to recognize and express my emotions has been a quest of mine for near 30 years. I started from scratch and kicked into a higher gear when I stopped using drugs and began recovery. Recovery, a process of becoming the kind of man my dog (if I had a dog) thinks I am. Keeping it simple, I learned to look for 5 basic emotions: mad, sad, glad, scared and excited. 5 basic emotions of mine, no different than yours or King Tut's 4000 years ago.

Mad, sad and scared are the most difficult for me and are indeed what I feel most often about having cancer. I just do not get to live as I lived before. No work, no income, anger at being near debilitated 2 to 5 hours each day by the "medicine". For several reasons I have to take it around 1pm each day and then have to plan my activity around those few hours. The harassing multiple minor physical and mental symptoms are often overwhelming. Some days I just get so down about it all that activity just does not happen. Slogging through mud sums up those days and parts of other days. I feel scared mad and sad that this may be how my life will go for the duration. And then I feel guilty that I am not reaching out enough, eating right, exercising enough . . . praying enough.

I do not want you to know that is how my mind works, that I get so sad and mad and scared - or even sabotage myself. The "shoulds" and "ought tos" attack me. I can do intellectual accepting about this disease and discomfort. I can be compassionate about how this effects those close to me. I can feel profound gratitude for the great years I already have had and those still to come. I am relieved my symptoms are not as bad as that of many other people. But 'neath everything else is the mad sad and scared.

Anyway, I also feel love, giving and receiving, which is not even mentioned in those 5 basics.

My relationships with others have suffered in the past month as I have retreated some and isolated some. I am coming out of it slowly.

I am aware of some anxiety about how the little white pill is working. The 1st catscan to measure its effect was two months ago and I go a 3rd month before next catscan. My mind goes to the worst that could be happening, and then relaxes back into trust and faith. I KNOW deep down inside that all this will work out right, but still, lurking, is the fear and sadness and anger. I live with me.
Bill