write for me

It has been so long that perhaps I have no readers left. Gets me back to "write for me". I still have cancer. It seems surreal that I still feel no symptoms of the disease. Plenty symptoms of the daily chemo pill. So much of my body hair has broken off, not fallen out, rather broken off leaving stubble like a 4 day growth of beard. Cuddling with Jacki requires cloth to skin because of the stubble. I really miss the skin to skin.

I had a terrible haircut 3 months ago - I'm talking worse than a blind monkey with a dull knife haircut. My hair grows so slowly now that only last week had it grown enough to be repaired. My fingernails have become slow growing too - no problem there, but they have also become thin, splitting, soft and brittle. Peeling almost. I can't pop a pop top without a utensil. Weird! I have to use strengthening fiber nail liquid.

I am having trouble figuring out how to make that stuff not shine. You know, like fingernail polish. I am thinking of just doing them black. Maybe I will try that for Halloween. Add some black lipstick, eyeliner, black leather and I can go Goth for trick or treating. I like the mini Snickers, just in case I knock on your door.

One of my medical people says hair, nails and other fast growing types of cells slow way down with chemo. Brain cells normally grow rapidly and their slow growth now might mean I am losing them quicker than I get new brain cells. Might explain chemo brain, huh? The good news is that cancer cells tend to grow fast too, and apparently, so far, they are slowed way down. Purt near stopped. Purt near?

If the whuppin' in "Whuppin' Cancer" can be a word, then so can the purt in "purt near stopped." If you didn't grow up in Kansas, then you might not know things like that. Just fillin' you in.
Bill

No new growth

Yesterday Jacki and I met with my Doc to go over the results of last week's CT scan. It gave us two sets of information:
1. From initial scan in January to first scan with this doctor in April, there was definite measurable growth.
2. Since beginning the Tarceva chemo pill there has been no measurable growth. This is what the Tarceva is supposed to do. No other drug is known to stop the growth. Even Tarceva sometimes only slows the growth, so I am quite happy with results of this CT scan

The Tarceva does extract a price. I am tired several hours each day. I have to get horizontal a couple hours most days. Decreased equilibrium occurs for a couple hours most days to the point that driving is not safe and I am very cautious with the stairs at home. Even when I feel good mornings and evenings, something in the picture takes away from my energy and mental acuity - i am slower.

My life is so different now than before diagnosis. I was aware of no symptoms before. The emotional price on me and those close in my life has been the greatest difficulty so far. Knowing I have a rare and near untreatable cancer kicks us in the teeth. The physical and mental price of the chemo is a great loss and requires more grieving than I could ever want. This sucks!

I am aware that today's blog has so far expressed no hope nor optimistic expressions of positive affirmation. This is how I feel at this moment and I need to get it out and on the table. I cry as I write. I have not prayed much today and I have not sought solace in meditation and communing with God. I am pissed off, resentful, sad and fearful. Again, at this moment.

Writing this has already helped. I can see joy and happiness, comfort and peace ahead. I do believe a cure will occur during the extended time the Tarceva works. Other drugs are being tested as we speak. I can feel hope and believe that God is here with me. Thank you for believing with me.
Bill

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

"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

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

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

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